Sometimes God does give you more than you can handle

Yes, I'm still here

2012-01-31T23:14:00.000-06:00

I'm still here. We had Christmas and it was nice. I actually did look into buying something like coal, but all I could find were 1) fun bouncy balls shaped like coal lumps and 2) in a nice red silk bag w/ the message "Have you been Naughty?" About two weeks before Christmas I found I was missing my eldest son too much and I sent him a message using that popular social connection place. (He isn't a friend, but that is the easiest and often fastest way to reach him.) He was happy for the invite, and he apologized for the nasty message he'd sent me in October. He came over around 4 on the 24th and stayed 'til maybe 1 in the afternoon on the 25th. The little boys were SO HAPPY to see him. He said he'd come back, but of course he hasn't. Unfortunately his sister missed seeing him because she was here a little earlier in the week (so she could travel to her foster mom's family for the actual day.)

Life overall is just as stressful as always, if not worse. All 4 of us are now in individual therapy and it has been recommended we also do family therapy. We've no idea where to find the time. (Not to mention even more hemorrhaging of money for health / mental health reasons.)

Mr. L now has a formal diagnosis of ADHD-Inattentive. His teachers simply do not see the Aspergers side of him, but at least the diagnosis will get him in the 504 program at school (504 = non-discrimination due to handicaps = modifications like taking a test in a quiet place rather than in the classroom). We met with the principal this past Friday and she said "yes" to the 504. She wasn't sure about an IEP, but I think she mostly doesn't know the law on this one. She was going to look into it (she did know ADHD falls under "other health impaired") and she was going to talk to the school diagnostician who had evaluated Mr L last year. ... We started Mr L on Ritalin after the holiday break and he's had a clear improvement at school, reflected by what his teachers say and his grades. Oddly, he only gets a morning dose -- it is not time-released -- yet his afternoon teacher is reporting good things too.

Mr P has regressed, or stays regressed, or whatever you want to call it. We keep trying to tweak his NR program ... He does occasionally tell us he wants to be good but his brain won't let him ... I'm not clear how that explains his dictating exactly what he wants (say, for lunch), then when you give it to him he throws a tantrum because that isn't what he wanted and then continues the tantrum when you say you aren't going to make a 2nd lunch for him.

Mostly though my energies have been going toward myself. My insides. The real ones. I started having abdominal pain and a tremendous amount of belching in the 2nd week of October. I saw my GP and then a GI nurse pracitioner within a week and both said "constipation" and sent me on my way. (NO! I told them.) The nurse practitioner prescribed Nexium, which helped the after-burp pains I was having. The pain isn't every day; it is so random. I can get a random day or day-and-a-half of good, then bingo I'm back to being too uncomfortable to consider leaving the house for a few days at a time, and other times I'm not too bloated but still need to burp OFTEN. (I feel like Homer Simpson, you know how his lips wiggle when he burps?) After a trip to the ER a 2nd nurse practitioner said "colonoscopy". Since I hadn't seen the doc I called to complain and even cancel, but the doc called me in the evening and spoke w/ me for over 1/2 hour. The colonoscopy (and looking from the top-down, too), was today. He didn't find anything remarkable. And I woke up from the procedure in huge pain (very unusual). He's got 2 other minor (non-sedating) tests he'd like run ... After the ER visit I was prescribed a pill (Bentyl) that helps but appears to interact with my Lamictal so that after I'd been on it a few days I started getting pre-seizure type symptoms. I'm using that pill now though as I know it will help control the pain and allow me to eat. I've lost weight since the ER visit a few weeks ago -- not much (I'd been steadily gaining through Christmas and now I'm back to my Thanksgiving weight. Although I swell up so much I feel like I need even bigger pants.)

So I'm glad it isn't cancer, at least not inside my digestive tract. I've wracked my brain trying to figure out what changed in early October and have come up with a lot of things, but none appear to be the culprit. (I experiment.)

I'm also not writing much because it was the Tegretol that made me need to write. The Lamictal encourages me to use song to express myself. And that was one of the many things that changed in early October. I eliminated the tiny dose of Tegretol I'd been taking. (I'd already been at full strength of Lamictal.) I should try going back on Tegretol. But you know that even with great insurance, each of those drugs costs us more than $350 a month? Lamictal does rarely have as a side-effect the abdominal pains I've been having.

On the good? side, I've been less depressed than usual and I don't remember a mid-winter of less depression than this one, so I like the Lamictal for that. (The good anti-SAD light also helps, I'm sure.)

In other words, my life continues to be, well, my life.

Do you suppose I could actually put coal into a stocking?

2011-12-07T21:06:00.000-06:00

I quit.

This job is too hard. I never did anything bad enough to deserve this. I tried, struggled, sacrificed, cried, and fought for too many years in order to get my eldest to the point one might call "non-contributing members of society."

And now I've got two younger ones who require an extraordinary amount of struggle, tears, sacrifice, and fighting. The older they get, the more obvious it is that their problems are pretty extreme. We are tired beyond tired, stressed beyond stressed, worried sick and feeling very hopeless. Well, I feel hopeless. I'm not sure about my husband.

How about a quick review of my kids?
Mr M - the eldest. He lives around here somewhere. His facebook posts show that he owes people money and is facing "hard times". Last I spoke with him (many months ago) he was facing more legal charges for an assault that sounded a whole lot like it involved drugs, he had just quit his great job and he was moving "across the tracks".

Ms A - She'd been doing relatively well. Until yesterday when she was caught trying to shoplift while being a volunteer with her vocational education program. And then she denied doing it.

Mr L - He has an F in reading right now. On top of that he has major reading projects due Friday (it is now Wed 8 pm): he has a book to finish reading, a speech to give (hasn't arranged a time w/ the teacher) and TWO papers to write. He is complaining there is too much to do all at once. His father and I have worked nearly non-stop for the past 8 weeks to help him get everything done. He can.not.focus on anything except the game scenarios in his own head. His eval came back as ADHD - Inattentive but it says he's not on the spectrum. My foot. He is just "checked out" too much at school for the teachers to have a clue who he really is. At least ADHD will get him school modifications. We have an Rx for Ritalin but our local grocery store doesn't have any. It may help him at school but he will be just as distracted (if not more so) at home. If he were any more distracted he would be forgetting to pull up his pants after using the restroom.

Mr P - He is in a major regression. His teacher is seeing it too -- it isn't just at home this time. Distraction, destructive impulses, impulsive overall, disobedient, defiant, intentionally hurtful.

The two boys are oil-and-water, or better yet, sodium and water (can burst into flames given the right circumstances.)

Tonight, Mr L was crying loudly because Mr P pushed his deck of cards around and he was afraid some of them might be lost under other things on the counter. Mr P found a prop I was going to use to help hold up part of the Christmas tree, and he picked it up and broke it, just because. A little later he kicked his brother because I'd said he (Mr P) couldn't do advent tonight because of breaking the prop. (The prop is replaceable, but that isn't the point.)

Christmas is my favorite holiday, but I am in no mood for it this year. I know it is *supposed* to be for the kids, but it is special to me because Christmas was the only time I remember being close to my mother. We felt like family at Christmas time. The house we're in now ... it feels like a torture cell or a padded room. I tried to cancel Christmas but the family wouldn't let me. So now I am going through the motions, sort of.

I just keep wondering what I did to deserve FOUR f'd up kids. Imagine what the boys would be like if I hadn't done everything I could to care for and protect them while I was pregnant. And yes, I know it is bad to think of them like that. I KNOW it is bad to think like that. But every day that is like today (at least 5 of 7) makes it harder for me to see the joy. I see failure in them and they are failing because I have failed. I don't get points for trying if I don't succeed. If Mr L can't figure out how to navigate life on his own, even if he does better than he would have without my help, I will have failed. If Mr P electrocutes himself or is arrested for lewdness (hands down pants), I will have failed. Despite my knowing it is wrong and even harmful, I show the boys my disappointment in them far, far too often. ... I can't find enough energy to fight for people who aren't fighting with me. ... I've no stamina left to censor my reaction when, say, I see that Mr L lost 4 points on an assignment because he didn't write his last name or the teacher's name on the paper (in the class he is currently failing, so yes he needed those 4 points.)

Santa, if you are listening, can you please bring us some peace? My boys need something that will quiet the incessant chatter in their heads so that they can participate in life. (Any magic you can work on the older two would also be greatly appreciated!)

Here is to hoping your pre-holiday prep days have been better than mine.

Is this what normal parents do?

2011-11-10T20:35:00.000-06:00

The latest thing Mr L's evaluator wanted from me was a list of all modifications I do for Mr L around the house and associated with school. I ended up writing down a whole lot of things because I realized I don't know what is a modification and what is the kind of thing most parents do for a 10-year-old boy! My understanding of children is rather skewed as I've got 4 who are "not typical."

Here is the list I sent her:

Therapies / Activities / Modifications do we do with Mr L on a regular basis
Nov. 2011

Around the House:
Fine Motor
• Permit a certain amount of eating with his hands (otherwise he wouldn’t be able to eat much!)
• Pour things for him (if spilling would be really not good).
• Avoid clothing with snaps or buttons.
• Offer to open bags, etc. if scissors aren’t handy.
• Open the minivan door for him (or I wait for him to succeed.)

Sensory
• I’ve removed excess toys.
• I help him find things, like pencils, shoes, erasers (I’ve tried to establish places, but either he ignores that or he chooses his own –in-the-way – places.)
• Don’t tickle him.
• Never draw / mark on his body.
• Never buy him shirts with collars.
• If he rejects a piece of clothing, I don’t try to make him wear it anyway (even if it was an expensive coat.) He won’t wear it.
• Notice when he needs new shoes because he won’t say so.
• If at all possible, let him bounce if he is in a bouncing mood.
• Don’t try to wean him off the night-light. (At least I switched him to a yellow bulb a few years ago.)
• I put up with a messy room (drawers open, etc.).

Other
• I try to never change an activity w/o warning. e.g. he can’t watch TV w/ dad tonight, when we get home he can’t start homework because he’s going to get a haircut (I don’t know when it started, but I give info on “things will be different” before he gets out of the car. If I haven’t done so I feel a sense of urgency as I pull into the driveway!)
• I try to respect his “order of events”, once we realize there is one and that interfering with it causes problems. This isn’t often but it was quite an issue with his homework this year as he insists he has to do homework first (after snack and before his NR therapy.) Attempting to change this schedule is just not worth it. (He does science and math homework first, but that is partly because they are his favorite subjects and partly because math is the last class of the day and is often still in his head.)
• I give him one instruction at a time. (“Bring me your laundry” … [wait ‘til it is done] … “Please clear your stuff off the dining room table” …)
• I tell him what to do if he hasn’t done it before or may not remember (e.g. he needs to sign-in at office when he is late – he is never late.) He doesn’t learn from visual observation. He has started to learn behaviors from books; not always a good thing …
• I spell out rules (“It is rude to read at the table when others are eating w/ you.”) I make allowances in discipline if he’s never been actually told not to do something (even if he was there when his brother was told not to, as he can believe the instructions were just for his brother.)
• If he is bothered by a noise, his little brother, etc., Mr L won’t say something or move until it is too much, so I try to keep an ear open for if he is too distracted and if so, I suggest he move.
• I try to always say “why” before “what” when I am preparing him to do an action he might not like. “Mr P will need to do his therapy in here soon, so please be prepared to turn off the TV.”
• I removed most media distractions (TV, movies, video games, computer) so he is less tempted to abandon homework in order to play.
• I try to be aware of when he is in a rough-housing situation w/ his brother so I can warn him of the need to protect himself.
• I tell the maid to not touch the things on his floor except when I give her the OK. I don’t move things around on his desk or shelves or floor if they look at all like they are part of a scenario.
• I pick up his dirty clothes from the floor w/ minimal complaints (except for socks. I’ve been trying to increase his awareness of his socks scattered throughout the house for about a year now.)
• He has only one must-do chore (laundry basket to laundry room on Sundays) (This is party a motor issue and partly a height issue. He doesn’t take out the trash because he can’t ever figure out how to get the trash can open while holding onto a trash bag; he can’t reach the shelves above the counter so he can’t put away dishes or set the table; he hasn’t a clue where to put most of the food I buy so he doesn’t help put groceries away; he never sees his own stuff cluttering the house so he would have to be told piece by piece what needed to be picked up and where to put it.)
• If he was supposed to do something for 5 minutes and it has been a while and he is still doing it, I tell him that it has been over 5 minutes and he can stop.
• If he asks a question, I stop expecting to finish answering when he goes off on a tangent. (I haven’t succeeded in this one. I keep trying … I know to wait until he has exhausted the new subject, and I think he’s learned to pretend to listen.)
• I know that erasers that you put on the ends of pencils are for having faces drawn on them and not to be used to erase anything. (He isn’t really that strict; I’m allowed to have my own supply.)
• I never ask him if I can throw or give something away (a broken toy, for example) as he will say “no”. I never let him see or know that I have gotten rid of something.
• My husband tries to always be available to Mr L if Mr L is upset in any way. Mr L won’t talk to me about things that upset him. This can really cut into My husband’s work time. (He does much of his work at home.)
• My husband also makes time to (patiently) listen when Mr L has yet another story / scenario he needs to talk about. (Otherwise he’ll have a harder time concentrating on other things as he has a story inside him that needs to get out.)
• He can’t participate in group swim lessons (distractibility + lack of visual learning.) Se we need to set aside time each summer for one-on-one instruction.

School Work:
Note: These are largely limited by my own (lack of) imagination. Every modification I’ve thought of so far has been approved by his teachers.

• I follow up with him if I think he’ll need help. (He is very unlikely to ask for help.)
• I created a proper-environment workplace, but I let him do work elsewhere if he wants to and if it is at all possible.
• I re-focus him if I hear him playing when he should be doing homework. Sometimes many times.
• I communicate w/ teachers at least weekly, especially when I think he has mis-understood an assignment (so far I’ve been right 90% of the time.)
• I investigate books (when there is a choice) for him to read, check w/ his teacher to be sure they meet her requirements, get his approval and either acquire them myself or give him instructions on how to get it.
• For long-term projects, I create time-lines for what to do when and how long it will take. (He has asked does he have to be there while I do it?)
• I nag constantly about continued progress on long-term assignments (and tell him I hate nagging him … but when I don’t nag, he does not make progress!)
• I review as many written assignments as I can get my hands on. (I focus mostly on spelling and capitalization.)
• I return his schoolwork to his desk if he has left it in an unusual place.
• I remind him to pack up his backpack (although he is getting better at this.)
• On Thursday or Friday I remind him to give me the packet of papers-to-parents that goes home on Wednesdays. (I almost never get that packet on Wednesdays.)
• Last year we made him learn how to type, so he types nearly all written assignments that he does at home.
• I turn on the light if he is trying to read in the dark.
• We read entire books to him. We let him “read” by listening to a book-on-tape. If he is having problems “getting into” a book, we read the start of the book to help him get past character-development or other non-action parts.
• If there are fine-motor tasks on a physical project, I help with those. (e.g. taping things down or together.)
• Per his request, we try to not ask him to do anything else until his homework is finished.

Neurological Reorganization:
• Combined 30 minutes of hands-and-knees “creeping” and belly crawling.
• Vestibular – 15 seconds, (move head rapidly through space and then stop), 8?Times a day. Min 5 minutes between each one.
• Sensory – light touch, 15 seconds, 10 times / day. Min. 5 minutes between each one. Focusing on 1 or 2 body areas (legs, arms, head, etc.) brush / rub something (non-painful) on him. Cloth, rubber, sensory brush, plastic, metal, smooth, knobby, knit, etc.)
• Patterns (lie on tummy on a mat, parents help him move his arms and legs in a particular way, 60 or 30 repetitions.)
• “knead” hand putty (Theraputty) 5 minutes every evening.

What I don’t accommodate for
• Whining and groaning as a way to ask for help.
• Forgetting to turn off his room or nightlight. (He complies quite quickly when I tell him it is on.)

How much longer?!?!

2011-11-06T23:08:00.000-06:00

We just had another NR re-evaluation.

You know how sometimes when something is wrong and you go to the doctor but whatever it is just will NOT happen and you hope the doctor will believe you?

My kids are not like that.

The car ride up and back was OK, except my body hates sitting that long (and I do all the driving.) The hotel was OK, except it smelled faintly of smoke and the curtains didn't block all the light. But the nearly 3 hour re-eval? O.M.G. If the boys keep acting like that during their re-evals, they will be 80 when they graduate from NR. At one point I just leaned down and thumped my head on the table (once; and I kept it down.) The evaluator said (tongue in cheek) "I just can't understand why you feel so stressed." I didn't realize until then that I'd done something one doesn't usually resort to around non-family.

So it is clear to my husband and me that we are doing NR for at least 6 more months. If, that is, we can actually handle it without a) being committed to an institution b) breaking up or c) killing a child. (Or all 3.)

Mr L has been our biggest worry, and continues to be so. He went from the morning evaluation followed by a long drive to an overnight birthday party. The party did not go well. He was upset all day. ALL DAY. That does not help us feel hopeful.

Is dancing a variation of seizure activity?

2011-10-30T23:36:00.000-05:00

Yea, that last post was a bit depressing.

The band I am in had a performance last night, at dancing. So I was there, but hardly danced at all (3? 4? dances -- there wasn't much time after all the band-duties were dispensed with.) It isn't that I don't like to dance, but that the drive seems to be gone. I do blame some of this on the Lamictal. The Tegretol made me need to write, I couldn't seem to express my emotions in any other way. As I weaned off that and started the Lamictal, I started singing (to myself) a LOT more -- random songs for emotional expression and relief. I used to do that before the Tegretol, but I'd stopped. I also find that with the Lamictal, I am a more observant musician. I am also more experienced now so I can't say the Lamictal was solely responsible. ... But in the past, even 6 months ago, when I tried to learn a piece by ear it was nearly impossible. I'd slow the .mp3 down , try to sing the tune, but I nearly always couldn't do it without the help of my husband's ear. I just couldn't figure out the distance -- and sometimes the direction! -- between each note. But starting a few months ago I suddenly could do it. In 1/2 hour I had a piece figured out (and put onto paper because my memory is crappy). Then I did it for another one. I am hearing more inside the pieces I listen to. ...

Why am I going on about this? Well, my husband and I did a lot of talking and we decided to go ahead and go dancing over Thanksgiving. Because there is music. I will play music, and I enjoy that. If we can get babysitting, maybe I'll stay up late enough at night to give my "dance!" brain circuitry a chance to sneak past whatever is hindering it. My children and my husband love being there and they would really miss it.

So now I find myself with less time to prepare and more appointments in the way between now and then. (Including another trip to Dallas for NR re-evaluations.)

It is rather fascinating about the Lamictal and the Tegretol. I can understand why an anti-seizure medication would reduce the drive to flail one's body parts around! And it makes some sense that since each drug works differently then each probably slows different parts of the brain in different amounts, and how my emotions are released depends on which pathways are difficult to navigate vs the easier way out.

Believe it or not (after that last post) I am not generally all that sad about not loving dancing anymore. But the SONG brought out my depression. The band plays that song, and we'd worked on it last during rehearsal that night. The next day I was quite down in the morning, but I managed to convince myself to put on some energetic music (Irish), and within 1/2 hour my mood had improved tremendously and the day ended up being quite productive. I never found anything that effective before Lamictal!

I just have to figure out how to lose weight. I wonder if trying to re-instate the "dance!" pathways (via lots of good music?) would a) lessen the anti-seizure (anit-flail-body-around!) effect of the Lamictal and/or b) lessen the anti-depressive effect of the Lamictal? I suspect maybe a but not b? Hmmm ...

Speaking of seizures, I've gone through 2 end-of-cycles with completely no Tegretol (and no gluten, curses upon that woman!) and have done well. I felt shakier than usual (for a few mornings right at the end) but I realized pretty quickly what that meant and I was sure to take all my vitamins and supplements and especially the liquid B. The liquid B is not mega-doses -- only 100% RDA or less of each B, but no small-intestine digesting necessary and it makes such a huge difference for me. Every month of no seizures is another month of not worrying about scheduling the hospitalization for video EEG monitoring. I sure am happy about that!

Changing without wanting to, losing a love

2011-10-25T23:28:00.000-05:00

This is a hard post to write.
And it isn't about my kids.
Not really.

I have not danced for 3 months
Not much before then
For a while

There was a party
a few weeks ago.
It was ok.
A little

So I tried again
and it was ...
sad.

I do not love it anymore.
I could not remember how.
The moves that once came without thought,
lodged in my brain for more than a decade
would not come out.
My brain no longer channels
that of a dancer.

Perhaps
it is the drugs
I need to take
to not be sad

Perhaps
it is
no longer an escape
from reality

I feel like I have lost a lover
A major passion,
gone.

For 15 years I have escaped
each Thanksgiving
into pure dancing joy.

We are not going this year.

I haven't the heart to do so much work
and, in the end
not escape...

This song does a great job of summing up how I feel.

http://www.youtube.com/watch?v=93jx8ywGJLY&feature=related

Ederlezi (a festival to celebrate the arival of spring)
All my friends are dancing the oro...
All the Roma, mommy,
All the Roma, dad, dad...

All the Roma, dad, slaughter lambs,
But me, poor, I am sitting apart,
A Romany day, our day, Our day, Ederlezi

Evaluating for Aspergers

2011-10-23T22:22:00.000-05:00

Life is ... full.

Today I finally finished the last of 4 major forms we had to fill out as our contribution to Mr L's outside (of school) evaluation for ADHD and Aspergers. Because it is an outside eval, we are allowed to make comments about our answers and the evaluator says she welcomes them. The school evaluator did not even imply that comments might be useful. So for the three formal assessment forms I have added comments. They won't fit on the forms, so I've typed them up. They average one page of comments for each page of each form. I think that is 10 pages.

I have found the whole process very draining. I don't like enumerating my son's foibles, differences, disabilities, reasons why he will have problems in the real world. Making the comments has helped me to understand which answer is the best one (yes or no? 1 2 3 or 4?) but they have also reminded me of all the work I have done to get him to this point. All the ways I've modified his environment, my constant work at social skills training, organizational training, fine motor support, linguistical training ... my constant efforts to prevent meltdowns and major miscommunications by trying to anticipate events and actions, by being careful about how I word my answers to him ... and I see how very far he has to go before he can be independent. (He still can't tie shoelaces!)

On top of all of that, this process reinforces my irritation at my husband's Aspergers. How I long to have inferences made, to not have to be constantly picking my words so that the precise meaning is obvious (and often failing.) To not have to explain so gosh-darn much about what, to me, are routine "daily" activities that if either one of them had "normal" visual processing would not need to be spelled out in words. I get tired of explaining jokes and idioms and trying to find a metaphor that won't further confuse someone with literal thinking.

I don't need to be reminded of all that I worry about and am tired of in regards to people I love and will be living with for many more years. The evaluation process sucks*, and it is far from over.

*"Sucks" as in "it is sucking my energy out of me". Like a vacuum cleaner sucks the dirt out of a carpet. ... [This is an example of the start of a daily definition conversation -- Mr L always takes a few more minutes of conversation before he "fully" absorbs a word. I remember this one happening in the car on the way home maybe two years ago...]

To finish on a brighter note, today I completed a minor home-decorating project that I've not found time or energy to do for about 2 years (but have thought about wanting to do many, many times ). It took less than 20 minutes.

It was gluten poisoning

2011-10-03T22:47:00.000-05:00

This past December I was "turned on to" a local bakery which sold amazingly good gluten-free bread. For the past 9 months Mr P and I ate that bread at least 5 days a week.

Two and a half weeks ago I found out that the bread was not actually gluten-free, according to independent testing. It is hard to say how much gluten is really in the bread as it went higher than the test can test for. It was at least 1% gluten. I suspect it wasn't much more, as I did not have obvious signs of gluten poisoning, nor did Mr. P. But there is no doubt both Mr P and I suffered from that gluten.

We know that gluten causes Mr P to have far less control of his bowels. Obvious gluten poisoning results in at least one bowel accident a day. Any of you who have been reading this blog know that Mr P's toileting problems have been a huge concern. He was having bowel accidents 2-3 times a week. ... The gluten factor doesn't mean that the spina bifida occulta does not play a part. On the contrary, I believe that the gluten in his system caused just enough inflammation to push the sensory nerves closer to the malformation in his spine. The gluten factor *does* explain why he seemed to be doing better "a while ago" but then got worse.

It takes about two weeks for gluten to clear the system. On the 12th day after no longer eating that bread, Mr P was playing, got up, went to the restroom and did his business. Then the happy, happy voice: "I felt that! Hey mommy! Mommy! I felt that I needed to poo!"

I hate the woman who did this to us. I don't like hating.

And what about me? Have I had any health issues since last December? Hmmm. Let's put that another way. What health issues have I *not* had! I've undergone a cardio work-up, two sleep studies, a 24-hour EEG, an MRI ... I can't blame the melanoma or breast papilloma on the bread as they were both around before December (I just didn't know it.)

Day 13 after being free of that bread was one of the best days I have had in a LONG time. Since then I've been more energetic, drinking less caffeine, doing more physical work around the house ... I'm not all the way back; I lost too much and it will take a long time to regain strength and endurance. Over the past few months I've gained a lot of weight. In the past 16 days I lost about 4 pounds -- my insides are finally working the way they should. (It is really stunning how being slow inside makes one slow on the outside.)

For the past 9 months, this woman's lies hurt me, Mr P, my husband and Mr L.

I eagerly scan Google to see if there is news of a criminal case against her. Because Mr P and I are not Celiac, I strongly doubt that we can initiate a criminal claim or a lawsuit. I've wondered if my insurance company should be notified, given how many expensive test they have had to pay for. I'm doing my best to push for some sort of complaint be filed against her.

The good news is that Mr P is generally doing better at recognizing his body's signals, and I have a real reason to allow myself to feel hope for my own future.

Look, wouldn't it be easier if I just hit myself with the hammer instead of waiting for my kids to do it?

2011-09-29T19:10:00.000-05:00

This afternoon has been one designed to turn people into alcoholics. I spent all day trying to gather data to fill out a 6-page questionnaire in preparation for a pre-evaluation consultation for Mr L. The doc had emailed me the forms less than 48 hours before the appointment and hadn't warned me I'd need to do major forms BEFORE the eval had started. She wasn't too happy that I hadn't managed to finish filling it out, although I *did* have all the data I needed. Then 1.5 hours talking to her, straight to picking up the boys...

Here is just one snippet of the events of the past few hours.

Mr L will NOT ask for help, at least not from me. Tonight he needed to get the definition of a math-oriented word for his math homework. His dad is holed away with an urgent full-brain work problem and can’t be disturbed. I had to ask my son why he needed his dad … could I help … he tells me, and I tell him he should use a dictionary, he knows where they are. Something like ½ hour later he was walking past and I asked had he found what he needed? No, the encyclopedia set we have didn’t have the correct letter. I said I’d bought him a good dictionary, it was probably in his room. ½ hour later I ask again and he gave me the same complaint he did the first time – and he hadn’t looked in his room. So we went to his room, I got the dictionary and handed it to him. Then he spent 15 minutes at his desk crying and sighing loudly, trying to attract my attention without using words.

He finally came to the room I was in, flopped down and said something like “it isn’t working.”

As we went to his desk, I said he’d lost a lot of time (due also to other problems I'll not go into) and he wouldn’t have time for playing. He said it wasn’t his fault, and boy did his tears flow when I said that yes, it was his fault, he’d had control, he could have asked for help sooner …

Shortly after he was done crying he did the dictionary look-up without my help. He said he’d figured it out.

I am VERY thankful that my kids are not violent -- I know many moms have days even tougher than this one (only a snippet of which has just been described.)

To top off my lovely evening, Mr L, who was upset, crying, grumpy, uncommunicative, etc. since he came home from school, is now hopping about and singing. Why? His dad is done working for tonight.

If he lies, does that mean he doesn't have aspergers?

2011-09-07T18:59:00.000-05:00

Mr L

My biggest worry these days is, more often than not, Mr L. He is 10 and has started 5th grade. His dad is finally seeing that Mr L does indeed lie. Last week Mr L signed my initials to two documents. Why? I was around. If I wasn't immediately available, his dad could have initialed the darn things. ... He was supposed to turn in a small project on Friday. Dad found out about it yesterday (Tuesday) because Mr L had been trying the trick of holding-thermometer-up-to-lightbulb-to-prove-you-are-sick. Dad cannot tell fever by touch, but he knew it was a lie when the thermometer he was handed said 105. ... Turns out Mr L had lost the prep work he'd done in class so he couldn't complete the assignment, but over the 3-day weekend he didn't mention it once to anyone. Today the papers were found, by him, in a desk drawer of a desk he never uses, underneath paper that had been there for months. Dad is ready to believe that. I am not. There are more reasons, but I'm not going to try to type them up.

I asked him why he didn't tell anyone he needed help finding the papers. He blamed it on stress. What stress? I asked. We need to help problem-solve to lower the stress ... He floundered a little and settled on the stress of the lunch time pull-out social skills group he has to attend -- that started today.

I do think stress is involved. I see evidence of him going into "freeze" mode (which seems to be his default.) I'm willing to believe he was in "freeze" mode even over the weekend, as if he did ever think about the project, he "froze" and never could gather the brainpower needed to ask for help. I can understand his being reluctant to tell me; I have a tendency to be emotive. But his dad, not so much. Mr L sees his dad as safe. ... I foresee an outside (of school) evaluation on Mr L this year, possibly this fall, so that we can demand a review of Mr L's current status of no legal basis for modifications... Joy.

School + NR + heat + doctors = zombie parents

2011-09-02T20:54:00.000-05:00

Do I need to say more?

Mr L had an MRI today to check for forms of spina bifida, based on his occasionally not feeling his legs when he is sleepy & feeling like he is going to fall over. The doc had ordered a CT scan but the radiologist thought an MRI would be better & he called the doc and then they called insurance and then they had an MRI appointment be a no-show, so "zip" after being there for 2.5 hours we went home, MRI completed. Mr L hated it.

Mr P slapped a kid at school today. Yesterday he spit in his dad's face. We think it is either the "truncal" NR patterns he is doing now (patterns done during the birth process, which is when he experienced the fear of imminent death) and/or the immense pressure he is putting on himself to be perfect in school. (His handwriting is AMAZING. But pulling it out of him is so stressful on me.)

My husband is thinking that his brain is so fried he'll spend a few days at the office working (single task, no interruptions) over this 3 day weekend. So I'm going to bed at 9 pm on a Friday.

Normal MRI, not so normal EEG

2011-08-24T23:07:00.000-05:00

I am SO glad to have been told my brain MRI is normal. I'm the sort that worries that maybe these odd headaches and possible seizures are signs of a tumor.

And I'm not exactly upset that my EEG was not normal. (After all, I am a not-so-normal type of person [grin].) It shows general / overall slowness which is probably the result of the antiseizure meds I take. (I TOLD you so!) And it shows, in the doc's words something "almost close to seizure marker." Which means he can't say yes or no to my having seizures. (Right side, temporal lobe.) I've suspected that location for over two years, ever since I stumbled on an article comparing migraines to temporal lobe seizures.

He can run further tests. Or I can stay on the meds I am on and never know if I can come off them. (It limits my PDoc's ability to mess with my meds in order to try to get / keep my mood somewhat stable.) I want off the meds, or at least a reasonable counter to the sucking non-motivation I have for doing anything that smacks of what I am *supposed* to be doing. (I'm a teenager again. Really. Except I understand why my slacking off is wrong.) So, perhaps I should get the next test.

But

You knew there was a "but," didn't you?

But ... that requires a 3-4 day hospital stay with me hooked up to electrodes and a video camera pointing at me. 1) I have kids. 2) My husband is far to stressed as it is. 3) We've nobody to come help my husband out. 4) I am gluten-free. What the [bleep] am I going to eat for 3-4 days? 5) I'll be bored out of my skull, although I can bring a laptop and do genealogy. 6) I don't have a laptop. 7) There is no 7. 8) My kids are being very loving to me right now and not at a stage of attachment that would make it good for me to up and leave to go someplace scary like a hospital. 9) They will take me off all my meds and wake me up during the night so that I will have a seizure. I *know* I will have a seizure. I don't like them. 10) What if it is a really bad seizure? What if it is the kind where I lose consciousness? What if it is a Grand Mal?

I got through an hour and 15 minutes in the MRI machine with the help of Xanax. I won't get a tranquilizer to help me through the fear of the seizures.

Can I do some genealogy now?

So now I have an answer that means forever-worry : (

2011-08-13T16:19:00.000-05:00

My well-honed clinical detachment for things spina bifida has worn off. (7 hours of driving and a 3 hour meeting w/ kids present can do that.)

And now I am sad.

We can keep fighting, keep doing therapies to help improve the strength of the sensations coming from his pelvic region. The fact of the therapies hasn't changed, but the length of time has grown considerably, and the outcome is far from certain. And I have battle-smarts, and scars. I know the sorts of things that can go wrong, and the risks of the non-optional surgeries that might become necessary.

I weep for my little boy, who will have a lifetime of difficulty, a constant need to remain vigilant to his body's signals and the fear of missing them. I did my best, I really did. The incomplete spinal closure was not caused by stress, or any known external factors. Folic acid can prevent something like 75% of the cases of spina bifida, and I started taking it well over a year before he was conceived -- at 10 times the dose recommended for "normal" women, and for the week before-and-after the 21 day mark (when the spine closes) I took it twice a day so that I would have enough in my system to give him whenever his body said "I need more!" But maybe I have a genetic mutation that cannot be overcome with folic acid. (I didn't start my folic acid w/ Ms A until just a week or so before she was conceived -- not enough time to build up my levels.) ... Yes, I've read that there is no apparent correlation with simple SBO and full spina bifida. But Mr P's isn't simple.

And I know I have to move past the "why", past the self-blame.

And how different is the fear of his needing a risky surgery because of a malformation than the fear of his cracking his skull because of his impulsivity and lack of fear? Right now, it *is* different. I have completely no control over the first but I can still work to try to lessen the risk of the second.

Until now, I've always felt that we could reduce Mr P's "special needs" to the point where they were just part of his personality, character traits that with time he could work on modifying on his own if he so desired.

Now I have a boy with a physical disability that currently isn't recognized as significant by his doctors. And I am so, so, so tired of fighting people who live with their eyes closed.

Mr P has Spina Bifida Occulta

2011-08-10T22:15:00.000-05:00

We took Mr P to (finally!) see a urology nurse practitioner (2 months of waiting and we don't even get to see the doctor!) She mentioned in passing that the results of Mr P's earlier spinal CT showed “incomplete fusion of the posterior elements of L5, S1 and S2.” I wondered aloud if this could be affecting his ability to sense when he needed to eliminate and she assured me no. Based on her examination, questions and an ultrasound of his bladder and kidneys, all of his parts look normal and healthy -- there is no neurological impact on the bladder muscle. His problem is, largely, sensory and we are to keep doing what we've been doing, only more frequently. He needs to try to pee every 2 hours and we need to add more fiber to his diet and we need to keep a log of when he poos and when he has accidents. Oh, joy. But she believes that an over-full bladder reduces his ability to sense that it is full at all, and in order to teach his brain to recognize the sensation, the bladder has to be at a "hearable" level. That makes sense. Before we left I asked again about the incomplete fusion. I was honestly stunned at how she waved off my concerns and I was reminded of how nearly all people with arachnoid cysts are told that these are harmless and cause no symptoms (because that is what the textbooks say) and yet there are many people with these cysts who are completely disabled by them.

We went to the urologist on Monday. It is now Wednesday evening and I finally remembered to Google that phrase "incomplete fusion..." Well, guess what. Here is what one textbook says:

"A common normal variant of the lumbar spine is incomplete fusion of the posterior aspect of L5 or S1 (so-called spina bifida occulta), ...It is of no clinical significance and should be disregarded. "

Um, "no clinical significance" is NOT what I was reading about for years as the mother of a child with spina bifida. I was a member of some very active lists and spina bifida occulta (SBO) was frequently spoken of as relatives of those with full spina bifida do have a higher-than-normal occurence of SBO. For some people, SBO very much affects their elimination abilities. Mr P is lucky in that the motor functioning, the nerves that control the muscles to his bowel and bladder (and the other very important organ down there) are all functioning. But it is my belief that the nerves that send the sensation signals, while functioning, are weak. 20 years ago I was told that a weak signal could not be strengthened, but I do not know if that is still true. Mr P is also lucky in that although he displays symptoms of his SBO, the CT scan indicates no sign of his spinal cord being tethered (which would be quite bad and necessitate spinal surgery.)

From another website:

For the majority of people with spina bifida occulta it is a minor fault involving one vertebra in the lower back. The unfortunate use of this term for such a minor fault can lead to distress for the person concerned. However, it should be considered as insignificant, both for that person and his or her children.

For a small number of people with spina bifida occulta the fault is more extensive. Either the split in the spine is bigger, or may involve two or more vertebrae ... This type of spina bifida occulta is significant.

There may be associated difficulties which may include the following: foot deformity, weakness and reduced sensation of the legs, change in hand function, bladder infections and incontinence and bowel problems

And from http://www.neurosurgery.ufl.edu/patients/spina-bifida.shtml

Spina bifida occulta ("hidden")

This is a mild form of spina bifida. There is no opening on the back, but the outer part of some of the vertebrae are not completely closed. The split in the vertebrae is so small that the spinal cord does not protrude. The skin at the site of the lesion may be normal, or it may have some hairs growing from it; there may be a dimple in the skin, or a birthmark. People with this form may have incontinence, slight ambulatory problems, and slight loss of sensation.

I am .... stunned ... pissed at the doctors and the textbooks. We use one of the best children's urology departments in Texas. Yet despite familial history of spina bifida a finding of SBO wasn't considered worth mentioning to us and despite housing a large spina bifida clinic and many pediatric specialists in the area, the impact SBO can have on elimination isn't understood.

After doing more research, I'll call the pediatrician and I'll find a neurologist who will do an MRI on Mr P's back (I've already found a medical paper arguing that an MRI is indicated for kids w/ Mr P's symptoms and X-ray findings.) Not like I *want* to put him through the experience of getting an MRI. (Have I mentioned that I get one on my brain next week? I hate them and will get sedation.)

And now I really want to have Mr L's spine looked at closely. He continues to have intermittent problems w/ loosing control of his legs when he is very sleepy. Maybe it isn't a from-the-brain loss of proprioceptive reception, but a from-the-spine loss of proproceptive signals.

I kinda want to say "Hey, look, God. I know I said I liked medicine and I know I have a greater ability than many to understand it, but really, if I wanted to know this much I would have gone to medical school. I don't need any further education, thank you anyway."

Ain't life fun?

Rested, but w/ a lesson I didn't expect

2011-08-08T00:06:00.000-05:00

We got back very early this morning. It should have been last night. Rain rain everywhere, except where I live. I didn't see the form giving me the option of bringing any back with me.

In most ways, our vacation was very good. Mr P did well (we didn't forget to remind him about using the restroom, either.) Mr L had other kids (his cousins) to play with so his mood was not dramatically influenced by Mr P, and that meant an emotionally stable week for him. Yay! My husband made the decision to completely stop NR for the week, which made it be a real vacation for all of us. Most of us swam in the ocean and in pools every day. We discovered that both boys love and are brave in a water park, so we'll risk taking them to one again.

The problem lay, of course, with family relationships. My brother's wife reads this blog regularly (hello!) so they know about what we've been dealing with and the strategies we've been trying in order to bring Mr P's behavior under control. I had no grief from them about, well, anything, really. Vacationing with anyone is always a learning process, and we are learning more each year.

And that, of course, means the problems lay with my other family. My sister (who was quite firm in saying she doesn't read this blog, although with my luck she'll decide to try it out today!) I think I've only had one post about her, here. She was given the responsibility of raising me while my parents did whatever it was they were doing (mom being often mentally unstable and dad, well, who knows what his reasoning really was.) My sister did the job the best she could but, very understandably, she harbors resentment and anger about it. The lesson I didn't expect to learn was how much that anger is directed at me. Again, understandable, but not at all comfortable for me! I think it is very, very unlikely she will ever move the anger to where it belongs (our parents).

Not all visits with her have been as bad as this one, but I was absolutely worried about how she would choose to tell me where I was going wrong with my child-rearing. (Yes, one of THOSE people who have no children of their own so therefore feel entitled to tell parents what they are doing wrong.) I was so worried about it, my body tried to come to my defence. The day she arrived, one of my ears closed up (causing me discomfort and a general feeling of disorientation) and it wasn't until the second-to-last day when I got an "emergency" acupuncture treatment that I realized that the biggest contributing factor was psychological -- I did not want to hear her criticisms.

This isn't, to my knowledge, a run-of-the-mill sibling rivalry. The ramifications, on me, are huge. On my birthday I woke up feeling bad. My back was in pain. I was feeling pre-seizure. I needed rest, quiet, peaceful music (and a bit more anti-seizure medicine). Then I was pretty sure I'd be good to go join everyone ocean-side. Everyone else had left but my sister was still in the rental condo. I explained how I was feeling to her, who then asked what I thought was a very kind, caring question. "What do you need to be happy?" But after I tried to answer, got weepy, and told her again it was a bad time, I needed to not get upset, she took my answer and used it to tear me apart. Before she laid into me, she said "I don't want to say this, but it is my duty as your sister to tell you ..." My problems with my husband were all my fault, I should have known better before I married him because even she could see that it was going to turn out this way. My kids acted the way they did because I wasn't parenting them right. I was bad for not apologizing, in front of her and setting an example to my children, to my brother and his wife for something I had done. I complain and pick too much... Some of what she said was valid, but none of it was appropriate for the day and how I was feeling. I don't remember everything she said. After she was done and she went down to the beach, I went into my room and started writing in my journal. Here is the start of my entry for my birthday day:

"I am a horrible, hopeless, worthless human. I will never be happy, never feel life is worth living, never be able to fix the life that I have. I am mean, angry, resentful, incapable of empathy. I am hard-hearted and selfish. I spend all my energy trying to save me ... I want, more than anything, permission to die. "

In other words, my day was shot. I did my best to pull out of it. I took more Valium than what was needed to stave off a seizure (but not so much as to put me to sleep) and I zombied through the afternoon. I was doing pretty well by the time my sister had firmly told me we would be leaving for dinner, but an hour and a half later, when she was finally ready to go, I was frustrated and steamed. To top it off, she declared to the table that since it was my night to cook, I would be paying for the meal. (My brother's family knew I hadn't agreed to that and they reimbursed me.)

I feel like I shouldn't be such a wuss. I need to stand up to her, let her anger hit me full-force and yet remain standing. I should tell her what her words do to me. I need to call her on her snide remarks (when she makes them in front of other people.) I don't do those things, because I don't like being on the receiving end of her bullying. (Hmmm .... "bully". I think that is a good descriptor for her. I didn't realize that before.) But confronting her seems pointless. She isn't going to change her opinions or her behaviors (at least toward me.) I end up doing what I am doing now, complaining to others.

I guess what I need to do is start looking more in-depth at how her "parenting" of me affected my self-perception. Along with the false views imposed on me by my parents, I need to shed the crap she's wrapped me in since I was tiny... I have such a small number of people who are family; I don't want to pull away (farther) from any of them!

And I am left trying to figure out how to handle future visits. Normally, at least as I've read in self-help books, the answer would be to stay away from her as much as possible. But doing so would come at too high a price. I don't want to stay away from my brother and his family, and I can't ask them to exclude her -- she treats them far better than she does me and she is close to their children. Even more important is that I need to be visiting my father. He is (as he always predicted), losing his memory at an alarming rate. She lives a few hours away from him; I live 1000 miles away. I'll try to figure out how to visit when my brother goes there and my sister is out of town on business. ... Which will probably make her angry ...

But I will never spend another birthday in her presence.

Stupid Lamictal

2011-07-26T15:05:00.000-05:00

I have gained 10 pounds since I started taking Lamictal. Ugh! I did NOT need that. I don't think it is making me sleepier or hungrier; I think it is making me less active and even less motivated than I was on the Tegretol. My mood is, on the average, up. But I've had some pretty down days too. I'm just so not sure it is worth it. I want off all these meds.

But I also saw the neurologist today. He didn't tell me to go away, that it was all in my head. Instead he ordered a 24-hour EEG and an MRI to be completed by the time he sees me in 3 weeks. Like I had the time. We leave on Friday for the family vacation and I still need to get the breaks checked on the minivan for when we go to Dallas just a few days after we return from the beach, laundry and packing and buying a birthday gift for Ms A (too late to mail-order) and Mr P's urology apt and and and. Well, I figure that if stress is a contributor to my seizures, they are more likely to catch activity on the EEG in the next few days!

I did have a good vacation on my own. And the house was in good shape when I came back (thanks to the maid coming the day I returned). The children didn't look starved, my husband didn't try to strangle me. I was on-the-go far more than usual but handled it much better than I expected. Probably something about not dealing with kids who cry at the drop of a hat and smelly underwear and having to make phone calls.

I wonder if I'll have more energy on the family vacation? I hope so. It cost too much money for me to sleep through it all!

Mr P and hope (not GB's mom's Hope, Corey's hope!)

2011-07-22T00:26:00.000-05:00

Corey has a post about giving up hope. As it did many of her readers, it struck me pretty hard.

On one level, I worry that I am one of the Pollyannas she speaks of. She lists the things she hasn't and won't try, and if I'm not doing them, they are on my list of "maybe we'll try ..." But she has done so many things that we have not and cannot do. Perhaps in the end we are "even", but it is hard not to wonder if we would have been more successful taking a different path ...

But the post really hit home for me because I've been struggling so much with giving up hope. I've had to let go of hoping that I could really help my eldest. Actually, I've had to work on accepting that he may well die of something I think I might have been able to prevent if I'd been smarter, or had better support (or less resistance) or ... And Ms A, well, my fall from hope was so huge that I am in some ways still caught in the air, wondering where I will land. But for both of them I know that there is nothing I can do to improve their overall ability to live in this world. They are who they are and my time has passed.

Mr. L isn't that bad off. I very much want him to be able to be successful, and sometimes I am afraid if I don't work hard to help him, he will end up depressed and barely employed, but my closer fear for him is being bullied in middle school, and while that is scarring, it isn't on the same level as what my other kids face.

My real fear is with Mr P. He holds so much promise, so much potential -- so much hope. But the thing that ails him isn't in books on doctor's shelves. The fact that I say "his behavior is a result of trauma" is already pretty far off the beaten path, the work we are doing to try to heal him is even farther out-of-mainstream. There IS NO MAINSTREAM as far as healing a kid like him. We are flying blind, desperate to save this beautiful and intelligent child and not only do we not have pilot licenses, we've no clue how to fly. We don't know how long it will take. We don't know where to turn if NR and diet aren't enough of an answer. He is too young for me to give up hope. But we are old. My husband is over 50, I'm only a few years away from there. I have so little fight left in me. I've lost two wars already.

I know we will keep fighting. I don't know what will be left of us after the war is "over."

To poo is one thing. To not change ... beyond my ability to understand

2011-07-12T16:18:00.000-05:00

Mr P is now 6.
He has a thing about going to summer camp. He poos. In his pants. Often.
At least at the last camp, he changed himself using the spare clothes we make sure he has every day. Except one time when he couldn't because he didn't tell us he needed a new change of clothes.

Today is so far past that.
Today he poo'd in his pants, wearing boxers and loose gym shorts no less.
AND HE DID NOT CHANGE.
When I got to camp to pick him up, his brother got to me first to warn me. As I got near, I saw that the other kids were holding their noses or putting their shirts over their noses.
At first I thought he'd changed but hadn't sealed up the ziplock baggie.
He says he didn't have time, but the stuff was dried on him.

Tell me, why should I not shame a child who has voluntarily done something so very shameful? His behavior today, his selfish stupidity, probably cost him quite a few friends for the remainder of the two-week camp that is in the 2nd day, not to mention potential play-dates after camp ends. One of the tings he wants most is friends. It shames and embarrasses his brother (who goes to the same camp.)

Tell me, why should he not wear a pull-up if he is going to embarrass himself by not changing his poo? At least that way there wouldn't be fecal matter somewhere in the building (because I can't imagine there was nothing came out of the loose boxers.)

I'm getting very sick of new-fangled child rearing techniques. I disagree that I should withhold my anger about his inability to control his body when we've given him tools (like, use a timer, sit on the pot and try to go poo) and he refuses to use the tools. If he is truly incontinent, then he needs those tools to be successful. If it is emotional, well how could I not think that it is about me? I am his birth mother and if he is angry at not getting the love he thinks he should get, that anger is directed at me.

I am tired of trying. I am tired of being trapped by first Ms A's body and now Mr P's. I am tired of being constantly reminded that I will never be allowed to have the life I once tasted. I am really, really, really, really tired of body excretions that should be going into a toilet instead going into pants, onto sofas, onto chairs, onto floors ...

I don't want to leave on vacation feeling so bitter towards Mr P.

No jury trial. Yay.

2011-07-07T20:27:00.000-05:00

Although quite a bit of me would love to have a judge and jury tell my son's accuser that she is one of the stupidest people on the planet and fine *her* for the needless inconvenience and cost (not to mention my son's month+ in jail.) I really don't want to spend the next three week-days in a courthouse that will take well over an hour to get to at rush hour. So I decided to pay the money for the plea-bargain, which the stupid lady accepted. I pay $500 (my son can't afford it). She was originally asking for $9000, which the prosecutor laughed at. (She wanted my son to pay for her credit card and toll fee non-payment and interest charges -- although all she had to do was fill out one very small form and mail it in and she would have not been liable.) The $500 is the rest of the price of the truck (that my son paid, but it never made it into her hands because the house was robbed.) Of course, he doesn't get the truck back. But assuming my son makes it here tonight and we make it to the county courthouse tomorrow morning, I will get $2500 bond money back. ... He'll ask for more legal money though. He's already got new "unwarranted" charges against him, battery. He's trying to tell me that the lawyer is basically on retainer for him and he can talk to the lawyer about this new charge. Right. I'm not the idiot who called the police to report the fight and then ran away so that he wasn't there when the police came -- but the other guy was there and was able to give a statement. (My son was said idiot.) Another he-said-she-said where they can't tell the entire truth. (My son owed this guy money. The guy got drunk and supposedly went into the house my son was in, uninvited, and started beating up on him. I'd bet money that the reason my son was in debt had to do with illegal purchases.) ... I'll buy him a lawyer and bail him out when there are preposterous felony charges against him. Not, however, for this. And this current charge is in our city, so he won't be able to guilt me into driving him anywhere.

No more NR helper

2011-06-27T17:01:00.000-05:00

Our student NR helper went home over this past week, and right before he left Mr P was having a Very Bad Day (the kid won't drink at camp, 9 am - 3 pm without any liquid in 100++ temps!) and had fallen asleep, so instead of trying to do NR with both boys, he asked if he could take Mr L out somewhere. When they returned, Mr P had woken up and he was mad because he knew they had done a "trick day" and he had missed out. He said that out loud.

It turns out that most of the time on weekends when they go someplace to do NR, they have not been doing NR. The boys do their patterns before they leave, and usually at least some of the belly crawl, so that is good at least, but the sensory and hands-and-knees do not get done. Now we know why the boys had not progressed as far as anticipated at their latest re-evaluation. The helper had been doing the work until sometime mid-March / early April. I had noticed that he seemed to rush through the sensory too quickly, and on his days off my husband had been commenting that the children, esp. Mr P, shouldn't be too weak to do what they've done every day for months. But they were.

Clearly, he needed to be fired.

Now we get to deal with the repercussions of a severed relationship, re-teaching the kids that you do not lie to your parents (my 6-year-old has been taught to lie to us regularly!), and make decisions about where to go from here with NR. Most likely we will keep trying with Mr L. We've seen some physical improvement and we know he has more improvement he can gain in that department. Mr P, ever since our nice week together he has been living up to his initial. It is just such a struggle every day to get him to do his creeping and crawling. And no thanks to our former-helper, he learned that if he puts up enough of a fight, not only does he get out of doing it, but he gets to go play video games while pretending to be at a book store or a mall or the Student Union doing his hands-and-knees work.

I don't want to hire someone else. I have a pretty bad track record.

Typical for me, I turn around and blame this on myself. I saw warning signs and said nothing (I am too weak, too afraid). If I were a healthier mother, I could have done more of the NR myself and the helper's not doing his job would not have been as significant. I can turn just about anything into a reason to beat myself up.

Between a rock ...

2011-06-14T16:31:00.001-05:00

[content removed ... privacy issues ... ]
....... On a much better subject, I just booked tickets for me to fly away for a week to a place in the north to visit with a cousin I met through all the genealogy. I'm going by myself.

A very lazy week

2011-06-08T20:45:00.000-05:00

It has been 2 weeks since my last post? I think I am moving in starfish time again. For a while I was very sleepy but we figured out that some of that extra sleepiness was because I was taking the Tegretol in the morning and had split my Lamictal dose so that some was in the evening. I switched to all Lamical in the morning and Tegretol at night and that has helped.

But now my body, brain and heart are on strike. Life around me is as close to being on vacation as possible, and I just will not do anything. Don't want to, don't care. My husband and Mr L are off visiting his parents. That leaves me and Mr P and Ms A (her foster parents are on vacation this week.) This means the most important things for me to do are telling two children when to use the restroom and being willing to fix small snacks for Mr. P and getting everyone to appointments. Which is far more than enough. (So far both children have been successful at avoiding accidents. I know this will end soon because Mr P has been doing it for his therapist and he sees her tomorrow morning, so the blog curse won't have a chance to bite me as any accidents won't be the fault of my writing down such good news on my blog. So there.)

I've been really bad, too. I've let Mr P play Wii nearly non-stop. He has been nice and loving and comes out to do stuff with me and his sister and I've had maybe an average of 3 minutes of crying each day since Saturday. I figure he needs a vacation too. (I don't know how to fight the blog curse on this one. Maybe if y'all yell at me for being a horrible parent then it won't feel the need to change Mr P's behavior.)

Lastly, my research was correct. I do not need surgery. I just have to be monitored with ultrasound at 3 and 6 months and again in a year. Yay! Yay!

Time to go make my children use the restroom.

Benign, but I need surgery?!

2011-05-25T20:12:00.000-05:00

Monday I had my arm carved out and sewn back up. 9 stitches. Shouldn't pick up anything w/ my right arm. Good that my ban on picking up things w/ my left arm (because of the biopsy) lifted on Sunday.

I have to see my dermatologist every 3 months, and I'm told there will be much less forgiveness as far as anything that looks suspicious; it will be cut out. I am pretty sure that means I'm going to have things cut out of me on a pretty regular basis. (I have probably 100 moles.) I dislike the whole process. Even with the lidocaine, my brain still registers the insult. The epinephrine that goes w/ the lidocaine doesn't help at all.

On April 25 I had a seizure. We thought it was because I'd been tapering off the Tegretol. So I've kept my Tegretol dose the same all month. Today, May 25, I had a seizure. Not coincidence. Turns out rising estrogen (which happens at the start of a woman's cycle) can cause seizures. Oh, what fun. It started w/ a migraine, and Advil is key to helping migraines. But I can't take Advil because it is also a blood thinner and I've got this 2" gash in my arm.

And while I was still feeling way too yucky from the migraine & seizure, I finally got the call from my gynecologist. The biopsy shows that it was indeed a benign interductal papalloma. But they need to operate in order to get the rest of it out. WTF?!!?? I've got a referral to go to a breast surgeon. I do NOT understand. I'll probably be told that if it had been left alone they would not need to operate but since I let western medicine mess with it and it is 1/2 gone, they need to use more western medicine to get the rest of it out. There has to be one [insert swear word of choice] of a strong argument for me to agree to surgery. The last surgery I had ruined my life (causing the narcolepsy) and I won't go back into surgery unless it is something that will save my life (or will restore me to my old quality of life / health.)

I need to sleep for days and days to get over all this stress.

But on Friday I have to drive my eldest to a different city for a court date. 3+ hours trapped alone with him in the car, while he tells me how wrong it is that I take any medications at all and what I'm doing wrong as a parent. And I have a band performance on Sunday. The performance I can handle. It is the being outside for it and having to keep my kids under control before-hand that is worrisome.

So yes, sleep. But first I think I'll watch an episode or two of my favorite comedy show.

A bad NR day.

2011-05-20T18:09:00.002-05:00

I had my breast biopsy this afternoon. I came home w/ an ice pack strapped to my chest and my body-knowledge telling me that sleep was the first step to healing well. My husband had brought the kids home from school and was having difficulty getting Mr P to finish his after-school supplements (amino acids that have the goal of helping him stay calm).

Just after I went to lie down, the student who helps us with NR arrived. I slept, deeply, but not for long. I woke to tons of crying by Mr P. It continued, and continued, and apparently he wasn't getting the help he wanted from his father because he started crying for me. And what was his problem? He didn't want to do his NR. He calmed down quickly once I was in the room and he told us he didn't want the student to help him, only daddy. So daddy tried. After a lot of effort on my husband's part, Mr P had cooperated for 4 minutes.

Because Mr P had been ill on Mon and Tue and because he is still fragile with regression and because my husband is extremely stressed and because I'm not only stressed but need to scrape together enough immunity to heal wounds (and not get an immune reaction to the lamictal) I decided that we needed to call it quits for Mr P for the day. NR heals, but stress destroys.

Shortly after that the student came to me saying that Mr L was refusing to do his NR work. I told Mr L that since he hadn't been doing NR every day for 9 months and since he hadn't been unable to control himself and cry for 10 minutes at a doctor's office the day before, he had to do the work.

Two minutes later, there was more crying. I asked "who is crying and why?" I had to ask this a few times, then finally Mr P says that it is Mr L who is crying, and he starts to explain why, only Mr L is furious that Mr P is saying anything and he escalates his laments. I never did hear what Mr P had to say, but I do know that Mr L was also quite upset that Mr P had some of the details wrong.

Then I took this video. It was supposed to be just of Mr L, but as soon as the camera was on, Mr P started wailing too. The video is about the sound, not the pictures. Because I don't have video editing software and I use names in the video, I'll need to remove it after a few days.

I know that most of you don't need this proof. Too many of you know *exactly* what this is like. But I just haven't got a clue how to continue to live with this constant after-school and weekend stress. (We can't blame NR for the tantrums. They both were like this before.)

Trouble comes in 3s

2011-05-18T13:04:00.000-05:00

This isn't my week. Of course, one could say I asked for it by scheduling my dermatologist and gynecologist 2 days apart.

The mole my dermatologist removed is melanoma, but "in situ" (has had no chance to spread.) I need to make an apt for someone to gouge my arm even deeper.

The polyp, however, was nothing more than a simple polyp.

What about #3? I'd been sent for a mammogram. I have a papalloma. It needs to be biopsied.

The fact that I now am a person who has had(?) cancer hit hard, but I'm ashamed to say so. I can't shake the feeling that there is more to be found. I know I am supposed to take this as a "wake up" call. I need to exercise or I really will get something fatal. Yet all that does is depress me. It doesn't motivate me. They say long-term stress can damage the brain. I wonder if my motivation centers have been damaged.

I HATE changing meds

2011-05-13T16:46:00.000-05:00

Just.Not.Good.

I'm switching drugs; from Tegretol to Lamictal. When I got too far down on the Tegretol, I had a seizure. Oh, joy. Last time I tried Lamictal I stopped when I was still at a tiny dose because I had a lot of tingling around my mouth, and skin sensitivity. I'm farther into the ramp-up now than I was then but I just switched from generic to name-brand (talk about expensive!) and after last night's dose and again today after a mid-morning dose I feel like someone has rubbed sandpaper on my arms, my hands are tingly, and my scalp is getting these odd twinges. But if Lamictal doesn't work, there is nothing left except perhaps drugs that cause weight gain. ... I am already obese.

I finally got around to seeing 2 doctors I am supposed to see every year. It had been closer to 2. Two days ago the dermatologist didn't like the look of a mole (the first time for me) and she got rid of it. I could tell my body didn't like having the numbing stuff injected and that generally my immune system is so low and my stress level is so high that such a "minor" insult was definitely noticed.

Today I went to my gynecologist, who found a polyp where it didn't belong and before I could say "can it wait?" she had whacked it off and was putting silver nitrate on it.

So I have two growths sent into labs to see if they are cancerous. Like that doesn't add to my stress levels.

Did I mention that the Lamictal is making it harder for me to get to sleep? I had been so happy to be off of Ambien. The insomnia and the Lamictal are adding to my already extraordinary levels of daytime sleepiness. I get an hour or so after I've taken stimulants in which I can be up and moving around and doing things. Then my body starts BEGGING me to lie down.

Well, that is my internal world today.

Externally, Mr P is in major regression and meltdowns. It is the NR. Things are now at the point where we have so much regressed behavior AND the NR stress so that it seems more stressful than it was before we began. I need the stress to stop. I NEED the stress to STOP.

I have to hostess a swimming party tomorrow and I haven't been able to pull myself together long enough to make it to the grocery store. I'm praying I can find cupcakes. With my two recent areas where there are no longer growths, I shouldn't be getting in the water, and Lamictal means I should not be in the sun at all.

Yes, I guess that was back to me, wasn't it?

It is very, very hard to not think about yourself when your skin, head, hands and feet are sending your brain messages that it does not normally get.

I have no "out". My husband is under tremendous work pressure this weekend.

The moral of this post? I HATE changing meds. HATE it.

My Amazingly Relaxing Weekend (Not)

2011-05-09T11:59:00.000-05:00

We went to Dallas this weekend for an NR re-evaluation for Mr P and Mr L.

I need a vacation now. thank you. please.

My almost 10-year-old regressed to about 4 in the restaurant at dinner time. Bouncing around and *yelling* at the strangers in the mirror. My 5-year-old had a near-meltdown when I wouldn't permit balance-beam walking on the back of the sofa in the hotel lobby. To top off his behavior, he poo'd his pants during the evaluation. After all that, it took over an hour to get from downtown Dallas to where traffic was smooth on the highway out of town. And no, it wasn't from being lost. Over 30 minutes were spent on a clover-leaf, at 5 pm on a Sunday.

Yes, there were things to be thankful for. The car ride wasn't bad as Mr P watched a video while Mr L listened to a book-on-MP3 (he can't watch or he gets ill.) There were no toileting accidents in the minivan. The waitress at Denny's remembered us and got the allergens list for us.

But the boy's extreme behavior while in public still has me shaky. I think what gets me most is that I never saw any effort on their part to be in control. No temporary respite while a child sat on his hands or looked at a picture.

They were nervous; this was their way of releasing the nervousness. Both of them, BOTH of them had near-total brain shut-down.

When Ms A was born, I spent almost no time on "Why Me?" It was what it was and I did my best to handle it and to get her the care she needed and to do what I could to ensure she had a good future despite her disabilities.

I don't seem capable of that now. I see that kids #3 and #4 are so highly special-needs that we cannot take them out in public together and my thoughts are immediately "What did I do to deserve this? What could I have done that was so thoroughly bad?" along with "No wonder I am such a mess" and "I will never find the time to get better."

Nothing is helped by the fact that we have a birthday to celebrate today and after Mr P goes to get a CT scan to look closely for spina bifida occulta, we head out to a restaurant for a birthday dinner.

OK. Time to get to the grocery store to fill my anti-seizure med Rx before I run out and make everything really horrible for everyone.

On turning 10

2011-05-06T10:51:00.000-05:00

I'm planning my son's 10th birthday party. Well, I've been trying to plan it, supposed to plan it, for weeks. It is next weekend. I just today finally forced myself to write the email invitations. My insides were churning and my feet were tingly. Something, clearly, is up. And it isn't just about the location or my worries about whether his friends will show up.

So where was I when I turned 10?

Ha.

When I was 8, I was living with both parents and my brother and my sister. We 3 kids were shipped off to an overnight camp for 8 weeks. (It was a great camp, I loved it there. I wasn't the sort to get homesick!) I had my 9th birthday at that camp. That was OK.

When we got home, my parents had moved to a different house, but my mom was only going to be in that house for a few weeks. Then she was leaving, and she was taking my sister with her. And after that few weeks my mother and sister did, indeed, move away. 1000 miles away. I didn't see my mother for a year. I think my sister came back for a holiday. Living with my father and brother was OK. I was sad and lonely but school was nice and the neighborhood was nice and dad fed us. There was a pond and a small stream across the street and down the hill. It was only a few block's walk to school. I had a bathroom to myself. Middle-middle class almost suburbia.

Then at some point during the year, dad told my brother and me that mom wanted us to go live with her. I was highly ambivalent. I told people "I don't like my mom but I am afraid of my dad." Then I was always asked why I was afraid of my dad and when I answered "I don't know." the subject dropped. Anyway, although my father told me all I had to do was ask to stay, I chose not to argue with my pre-ordained fate and that summer I was shipped off to live with my mother.

Before I left, I refused to pack. I didn't really know how. Also, I am sure, because I was afraid of what happened next. Because my brother was younger (he was 7, I was 9), he didn't have to try to pack. Dad packed his stuff. We arrived probably no more than a few weeks before my birthday. Everything was so different. My brother found a friend right away. I did not. The neighborhood was inner-city in a small city. Poverty and petty crime made wandering around the neighborhood feel unsafe..

I slept in a nearly empty room until my stuff arrived. My father had got a large box, possibly one for a refrigerator, and dumped everything from my old room in there. Opening that box and seeing everything jumbled up, my puzzle pieces out of the boxes, it hurt. It stung, badly. And, of course, it was completely up to me to get everything a place, to sort through it and put it all away.

I think, perhaps, the arrival of that box was considered a birthday present. I know I had been so eagerly looking forward to it. The timing would have been right. (I'm sure my sister tried to make me a cake. Baking was not her strong point.)

In 4th grade I was a child and I had friends. In 5th grade I was an enemy to all the girls in my class because the boys were looking at me. I was beaten up every day after school for the first 2 weeks (by the girls in my class), until I learned not to tell. (I told the school, not my mother.)

So yes, the life transition heralded by turning 10 was, for me, highly, very, completely negative.

I have no idea why mom wanted me to go live with her. Unless, perhaps, it was another ploy to get back at my father. (Which, again, worked, as he'd bought a big house in a young neighborhood with good schools and then a year later found himself with no children. He retaliated by refusing to pay child support.)

Conceived as an act of revenge

2011-04-30T16:37:00.000-05:00

My mother worked with the same therapist for 12 years. At first it was face-to-face, but after mom moved they continued weekly sessions over the phone. When mom died, her therapist flew across the US to come to the funeral.

With this journey I have apparently started, I felt it almost necessary to talk with mom's therapist, to see if I could get some clarity. In the past, I have become stuck on "but what really happened?" But I also knew that such a conversation would be very hard on me, so I wrote down a bunch of questions and had my therapist make the call.

And now I am dealing with bits and phrases extracted from what my therapist read to me from her notes. It has been hard to figure out what hit me so deeply, as on the surface I really didn't hear anything new.

One piece was new, at least in my consciousness. It was that "[my sister] was the golden girl, [my brother] was the golden boy." I'd understood that about my brother for quite a while. And my last post was me working on processing the recognition that my sister was also prized by my parents.

Although I've said I wasn't going to work on this "processing" on weekends so that I can give time and attention to the boys, I've been unable to shake feelings of worthlessness so I thought I may as well do some "stir things up" reading. I'd be absent either way, but with the reading perhaps I'd make some progress.

Today I read 5 pages of "The Emotionally Absent Mother". And on the 5th page I got a really big clue to what I heard that has me disturbed me so. From p. 13 "'I'm glad that you're here.' is an important first message for a child to hear. This message is communicated through behaviors that tell the child she is valued and wanted. Many believe that this fundamental sense of being wanted begins in utero."

At some point in my life my mother told me she got pregnant with me to get out of a job. She'd also said that once there was one child, my father insisted there be three, as that was how many his parents had. (The first child was the result of birth control failure.) But the story my mother told her therapist was that my father had wanted her to get a job, so she got pregnant with me to "get him back." It puts quite a different spin on the "get out of a job" story, doesn't it?

One of the thoughts that has been bubbling around inside me is that I was conceived with revengeful thoughts in mind. I was created as a tool of hatred.

I'll never know the full story, but I do know that both my parents were working toward their Masters degrees. I think my father finished first. I think my mother ran into significant problems with her thesis. I have notes from my father that say he entered a PhD program "knowing full well he wouldn't finish it." Fast-forward 1-2 years and they both have their Masters and I've been born. It really would have been just like my dad to tell my mother that since she wasn't likely to succeed, she should stop trying and get a job. It would have been the logical thing to do. One thing mom never was, was logical. And whatever the real story, my mother was furious at my father for his insisting she get a job.

Mom's therapist relayed another story. Around 1990, my mom wanted to get out of a job, but she didn't know how; she felt she couldn't confront her boss. So one of her alters broke one of the body's legs.

In other words, it is very possible that one alter decided that being pregnant was the right way to stay in school and not get a job (this was, after all, over 40 years ago and young pregnant ladies were not highly employable.) But what about the host? What did she think? She was angry, AND she was pregnant.

My mother hated the real world; she loved academia and learning. And even though she had one child, I am rather certain she had no idea how trapped she would be after having a 2nd one. She got pregnant with me thinking it would help her get what she wanted -- a life spent holed up with books and instead she was working before I was 17 months old.

So was I wanted? Hardly. My existence forced both of my parents into the working world. My father would try again for a PhD, but not succeed. My mother never had the chance to try. In the end, though, her ploy did have the desired effect. My father thought I was a genetic misfit, disobedient, overly willful, and I just generally did not belong in the family. According to him, I made his life pretty miserable.

---

If the hatred that was instilled in me from the moment of my conception fulfilled its intended purpose, then it is free to leave me? [My logical brain doesn't want to receive benefit from my father's suffering. There are some very heavy paradoxical conundrums here.]

---

I will never give up the belief that at least some of my mother's alters liked me, at least when I was little and cute.

Why this memory today? I've no idea.

2011-04-28T18:32:00.000-05:00

My parents used my older sister as a surrogate parent for me and my brother. Not good, but most people may think it wasn't that bad, either. My mother had precedent for it; she was largely raised by her oldest sister.

There were 3 kids in my family. My younger brother was 18 months younger than me. My older sister was two months shy of being 5 years old than me.

When I was 2, 3 and 4 years old we lived in a northern state in a city that got cold but didn't get all that much snow. (I returned there for 5th - 12 grades.) We lived in 3 different places over those 3 years. My memory is from the last of those places, so I must have been 4.

That means my sister was 9.

It was winter, and we'd had an unusually nice snow, enough was on the ground so that the kids could go sledding. There was a great hill for such purposes on the grounds of the small apartment complex we lived in. I think we'd tried sledding before, but our one "sled" was a metal "flying saucer" which did not work well, and my sister, who was in charge of watching my brother and I when we were outside, had declared it unsuitable. She must have got a new sled for Christmas because now there was a 2nd sled. It was red and possibly plastic. I wouldn't know. My sister did not let me try it.

I watched for quite a while as she and my brother used the new sled. I watched all the kids go down that hill. There was a lot of laughter. The kids were having a lot of fun. My sister told me to use the flying saucer. I did try, but it didn't slide. It wasn't fun. So I stood at the bottom of the hill and watched, and waited until my siblings were done so we could go home.

I've remembered this for a very long time. Nothing new about that part. But today I lay down and thought about it. If I was such a rebellious, hard-to-control, overly-willful child, why didn't I complain to my parents? And I heard my 9-year-old sister's voice. "She's lying."

As I type this, I remember my trying to protest. It probably ended with my trying to not cry, and being called a crybaby.

I have no other sledding memories. I do remember sitting inside, angry, knowing that others were out there having fun.

Maybe my sister was right. Maybe I was too big to go down with her and too small to go down by myself. Maybe I had gone down once with her which caused her to decide it couldn't work. Maybe.

What I struggle with is how can I be angry at the way I was treated by a 9-year-old? She caused me a lot of emotional harm, in this memory and in many others. But she was just doing as she'd been taught. My parents didn't like me. They condoned my being excluded and picked on.

But the hurt I felt that day is still with me.

My current stage in self healing

2011-04-23T10:29:00.000-05:00

Funny how significant things can happen in such minor ways.

First, I had a consultation with a different psychiatrist. I was very surprised to learn that she would not take me as a client because I was too complex. In her report (which was sent to my therapist but not to me), she talked about my difficulties with eating as being indicative of deep issues surrounding caregivng and nurturing. Nothing about that should be surprising, but it was. I'd always just joked that my dislike of cooking was because I was "maternally deficient."

Then a week or so later (at the start of April) I went browsing in the library, sort of looking for a book on gratitude that my therapist had mentioned (but not a full recommendation). I didn't bother to look up where the book might be, as the library is small and I thought I knew what section it would be in. I didn't find it, but I saw a book with a title something like starving for love, and I picked it up. It was, of course, about eating disorders. But the cover mentioned something I've never heard of before -- ED-NOS. Eating Disorder Not Otherwise Specified. I don't need to read the DSM-IV to know that I could easily carry that diagnosis.

The next book I picked up was “The Body Never Lies: The Lingering Effects of Cruel Parenting” by Alice Miller. Not only does the title address two very significant issues in my life, but as I flipped through I saw that the last section was a fictional diary about a girl with an eating disorder. So I brought the book home.

I started reading it, and it was like every sentence was tearing into me. I started a journal and wrote down so many passages, and my thoughts. Alice Miller has written many books, and I quickly saw that I owned another one, The Drama of the Gifted Child”, which is also about child abuse (although you can’t tell it by the title!). This book is one I got from my mother's house, from her estate.

Both books trigger me very quickly. I quickly learned that I can’t function for hours after reading just a few pages, so despite this feeling, this need I seem to have to go through this process, I’ve decided to not do any reading or journaling on the weekends. I try to do it in the mornings, but there are no more than 2 each week that hold the room for such work.

The lesson that was immediately apparent from these books is that, in the end, it is about figuring out how to not keep treating my boys the way I do (my behavior being largely unconscious reactions to how they trigger my past.) This struggle is where my last post came from.

And because I never do things ½ way (all or nothing is more like it), I went online to try to find books that specifically designed for me – a mother who knows she is perpetuating the cycle. I ended up buying:

“Thou Shalt Not Be Aware: Society's Betrayal of the Child"; Alice Miller; [This is a bigger book than her other 2. I haven't even skimmed it yet.]

"The Narcissistic Family: Diagnosis and Treatment"; Stephanie Donaldson-Pressman; [This looks promising. I certainly see a lot of my family-of-origin as well as myself. I'd never thought that one could be narcissistic and not much care about how you looked, but it is really all about one's thoughts being turned inward all the time, making you unavailable to others.]

"Dialectical Behavior Therapy Skills Workbook: Practical DBT Exercises for Learning Mindfulness, Interpersonal Effectiveness, Emotion Regulation, & Distress Tolerance (New Harbinger Self-Help Workbook)"; Matthew McKay; [I like this, so far. I need it. I find I usually don't use workbooks well, I find the exercises too silly or too hard. But so far this one has made me really think and I've been filling in the blanks ...]

“The Emotionally Absent Mother: A Guide to Self-Healing and Getting the Love You Missed"; Jasmin Lee Cori MS LPC [This is a book full of non-stop triggers for me and therefore very important for me to work through, very slowly. I skimmed the sections on healing first so that I could have some faith that I could be healed.]

I also found on-line a good book that talks about the process of exploring one’s own abuse. It starts with how to stay safe and has exercises to help you figure out how to remain calm and centered (or, how to re-center).

What has surprised me is that although it feels like I have done very little work, just a few hours of reading and letting my mind feel and absorb what it hears (often through journaling), I seem to be better able to stay present with the boys. Then again, Mr P has been slowly coming out of his 6-week regression.

And now I've got enough mental energy to face making calls on behalf of Mr L, who also needs to be in therapy, and getting social skills training.

It is a long, hard, slow journey. I'm glad we seem to be moving in the right direction, finally. If only we weren't also racing against time.

Daily Triggers

2011-04-17T14:49:00.000-05:00

I stopped writing for a while for 2 reasons:
1. I've cut back severely on my Tegretol. I started writing when I started the Tegretol. Clearly, something about what it does to my brain turns on my writing circuits.
2. The CPAP is working, and with the additional energy I've been doing things too-long put off, like cleaning the kid's toy room and dealing with the taxes.
3. Life around here is so hard I can't deal with thinking about it. If it isn't IN MY FACE, I try hard to pretend it doesn't exist.

That anonymous poster was right, as were previous ones. I should never have had children.

My family is in major crises, and I am the cause of it. My kids need help, but since I am the root cause of much of their problems (e.g. depression, attachment problems, behavior issues), no help is going to succeed without my in-the-moment, participatory (and continuing) involvement. But when they get home from school, I check out. I disassociate nearly every day. I can't help to fix them until I am better. But even with the best supports and continued motivation on my part, getting over all the trauma of my past so that the trauma of my present doesn't trigger me to the point of uselessness is going to take a LONG time. Years. My kids don't have years.

And I don't have "the best supports". I have no family, no close friends. Nobody to take the kids from me when I can't cope without yelling, except my husband, who is so far past his breaking point right now it is scary. In 15+ years I've never seen him this stressed. (The semester has been particularly hard.) He needs me to do the thinking, the planning. He will, for most things, work to execute the plans. But I can't think, my brain is too busy running away.

I've bought lots of books, many hold promise. But what I need, REALLY REALLY NEED, is a good old-fashioned sanitorium. A place I can go to regain my sanity. A few weeks or a few months, someone else feeds me and makes sure I get exercise and I can work on my issues without having to be sure I'm OK to drive to pick up the boys at 3:00 and then hopefully stay present so I can feed them their snacks. (Not like I succeed at that too often.) [But I cannot go away without more help for my husband and the boys. He cannot do it all alone -- or so he certainly wants me to believe, but my therapist keeps telling me he is perfectly capable. Yes, he is capable of doing each piece in isolation, but not when you put them all together.]

You want to know a dirty secret? I feel alive during the day when my husband and kids are gone. The world is full of possibilities and potential. I clean, I plan, I do, I read, I nap, I learn, I work. My life ends every day at 3 pm. Mr P triggers me non-stop; I see his oldest brother in him all the time. Since our last NR re-evaluation in Feb, he regressed back to the beginning and we've only seen the improved Mr P a few days since then. The help he needs is attachment work with ME and his DAD, but neither of us understand what attachment is (having not felt it ourselves), know how to communicate, how to feel our emotions appropriately. (Maybe, MAYBE, over the summer we can get into therapy.) I FEAR loving Mr P. And Mr L has shut me out of his world. The only person who matters to him is his father. Mr L is back to wailing and tears if, for example, his brother goes to get daddy's newspaper. (But do they ever have the motivation to do something good for me?) I am the hated necessity. I am ignored and not listened to, yet my husband turns to me constantly, asking me what he should do when a boy does this or that. It is like asking the butcher how to keep your animals alive.

We are a family in crisis. I feel like I am standing on the deck of a ship that because of me is in treacherous waters and because of me wasn't steered around the rocks properly and now it is going down and I only have a little cup to try to bail with.

Amazingly, nearly every day I wake up thinking today will be a good day. And every day I am overwhelmed and my defense mechanisms take over and by the end of the day I am a disassociated zombie. There is no pill to keep me HERE, aware, open, accepting, willing to try. I can't blame my kids for thinking that I am the opposite; that is all they see or remember. Maybe it wouldn't hurt so bad if I didn't want to be doing things differently.

Just a typical day

2011-03-27T13:37:00.000-05:00

I've been thinking I need to get back to blogging. For starters, I need to update y'all on my health. (I've had a CPAP for a week, it is definitely helping, but my poor muscles are so not used to working so I still get tired fast, only it is different.)

And then a few minutes ago my 9-year-old burst into uncontrollable, horrible tears, nearly gagging, because he cannot remember how to put together the Lego structure he himself had built and he himself had taken apart. I bought him a camera just so this wouldn't happen, but he doesn't use it. (His dad is in trying to help him calm down, but it sounds like there is still a way to go.)

I'm working, very hard, on keeping positive and feeling the hope that the CPAP has given me.

One part of the puzzle is solved!

2011-03-01T19:04:00.000-06:00

It turns out at least part of my physical problems is obstructive sleep apnea. I go to be “fitted” with a CPAP machine on Friday. I’m hopeful it will at least reverse the severe decline I’ve experienced since just before Christmas. My sleep test 10 years ago said "no apnea" and I was having major problems with sleepiness then, so I don't expect to suddenly be "normal", but this at least gives me hope that I can be something other than a messy, sleepy, bitchy blob.

Yay!

Why I started this Blog

2011-02-26T13:14:00.000-06:00

Back in the summer of 2009 I was desperate to figure out how to stay alive while at the same time keeping my daughter alive. Her demands far exceeded my ability to cope. I knew I wasn't alone, but I had no idea how to connect to anyone in a way that I could admit how extraordinarily difficult life with her was. The spina bifida support lists I'd been on were full of young parents who could not hear that life might stay overwhelming. To say so was not supportive to them, but to not say so meant that I could get no support. I dropped off those lists years ago.

I found myself at a book store with time to kill and browsed in the "Special Needs Parenting" section. I thought perhaps I could find some wisdom, some advice, on how to handle the enormity of the life I was living. Instead all I found was book after book about how "I Fixed My Child, You Can TOO!" or perhaps books filled with strategies I'd already tried and resources I'd already discovered couldn't help us. The biggest problem, I realized, was that my daughter did not fit into any of the categories. Her disabilities are so much bigger than "Spina Bifida" combined with "Learning Disabilities" and "Sensory Integration Problems" and "ADHD".

I went home and did one of the things I do best. I Googled. I researched. I came across references to how people with Traumatic Brain Injury act and I thought "Yes, that sounds like my daughter." The more I read, the more I became convinced that her most confusing behaviors originated from traumatic brain injury (TBI), probably as a result of the major, major brain surgery she'd had when she was 3 weeks old. There is a local support group for TBI and I contacted the coordinator. She put me in touch with the doctor who runs one of the inpatient rehab clinics around here and he talked with me for free for nearly an hour. The thing that amazed me was that both of these people "got it". They got HER. For the first time, ever, I was talking to people who UNDERSTOOD. I cannot adequately explain how much it wore me down -- still wears me down -- when I have to fight the biased, uneducated, blind opinions of the professionals who work with her.

The support group meets once a month and I ended up going for the first time in September. It was one of the most significant things I've ever done. I was not the only new person, and each person talked almost at random to tell their stories. I was worried that there might not be time for me, but also that across from me was a woman who was clearly not a first-timer as others had gone to her, but who was also clearly in distress and I think she was waiting until the new people had their turn. I heard stories that completely affirmed my daughter's "diagnosis". Every major problem behavior that I saw but professionals either ignored, pooh-poohed or blamed on me -- these were problems for all the families. Except that their professionals usually understood. Stories of lives turned upside down and hopes dashed. A story of horrible red-tape and funding issues for an adult child injured outside of the state but with no support in that other state; the child could not be moved here for lack of funding once she got here. A family who was clueless as to the next step to take as their husband/father was about to be released from the hospital and the doctors thought he was OK but the family knew better. Nightmare after nightmare and in some way I shared experience for each one of them. My turn came and I was as brief as possible. I'd received a great deal of support already, and I handed the floor to the woman in distress.

Her story is why I started this blog and why I gave it the name I did.

I am recounting this mostly from memory, and I may have some of the story wrong. A few years before, her husband had contracted viral encephalitis. It hit him hard, and he lost all bodily abilities. At least some of "him" was still there, and she still loved him and cared for him. She tried to keep him at home, but that was overwhelming for her, so she searched for a nursing home to put him into. It was clear that she had been an active member of the group at this time, because she didn't need to tell much of that story. It had been a hard time to find a place, and when she got him into what I believe she'd determined was the best, it was horrible. She couldn't bear the (lack of) care he was getting. There was enough of him left that he was suffering from it. She brought him home again. I am certain there wasn't enough funding for round-the-clock nursing. There never is, especially since the state believes she should put in so many hours of free labor. And how hard it is to have strangers in your house all the time. Some of those strangers want to do a good job. Many don't much care. The job of a home-health caregiver pays diddly squat; I suspect a home-health nurse doesn't get much more. There are too many clients and too few nurses. She'd lost her husband and friend and instead had an overtime job caring for a body that would never get better. Except he was still, at least a little, in there. And one day, the home health nurse didn't show up. For the 3rd day in a row. And she did what she knew was the best answer. She injected him with an overdose and overdosed herself.

Except she lived.

And I knew. I KNEW what had driven her there. And I knew that I was not alone. The life of caring for a severely disabled person can be so depleting that all life, all hope, is taken from the caregiver. The answer isn't as easy as "get funding and hire more help" (which is not in any way an easy thing to do.) The answer isn't "get therapy" (although that is necessary.) For some the answer lies in their faith in God, that despite the lack of a life here on earth they will be rewarded in the afterlife. For some the answer lies in realizing that this level of care is their "calling". But then there are the rest of us. Those of us who already battled with depression and even suicidal thoughts or who already battled with addictions. Those of us with just a bit too much money to qualify for any real help but nowhere near enough to pay for it all by ourselves. Those of us with no family nearby, or who are abandoned by family out of fear.

Since this seems like a good time and place, I'll add a link to a fact sheet on Caregiving and Depression put out by the Family Caregiving Alliance: http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=393 Note that nowhere in that document is the word "child". This doesn't even begin to address the added fears, pressures, life-time worries of a parent of a severely disabled child. At least their advice doesn't include "If you just prayed hard enough your child would be well, so clearly it is your fault your child is still unwell." or "You should be enjoying the life God made for you! After all, if He designed it, it must be good!" (Did you ever stop to think that sometimes God intentionally designs things that don't work out?)

Do I believe that prayer is helpful? Yes. I have experienced amazing manifestations of answered prayers. Do I believe that prayer can fix my daughter's brain or body? Never.

Look at what my friend from the support group would have had to pray for. Either a total miracle (and I'm sure she did pray for that, but in the meanwhile she had to live through each day, each hour!) or she would have had to pray to stop caring about her husband so she could dump him in a nursing home and be done with it. And she may have prayed that. But what kind of God would grant a prayer like that? Not usually the one we believe in.

God granted me a respite, a solution I had not envisioned. But it is not permanent. The needs of my daughter are always in the back of my mind, eating at me. I feel helpless; changing her long-term outcome ... I think we all just close our eyes and talk about how to get her though this next year because it is too hard to admit what her life will really be like. It is too hard for me to admit how I will ALWAYS be responsible for her health and well-being, and she will ALWAYS fight to be fat, lazy and sick. Until she wins, and she dies.

Do I believe that Sometimes God Gives Us More Than We Can Handle? YES.

Do I *blame* God for that? NO.

The difference is that if you tell someone that God doesn't give them more than they can handle, it is the same as telling them that it is their fault for not being able to handle what they've got. Having a child who has spina bifida or is struck by a car and gets Traumatic Brain Injury is not the fault of the parent. Living in a society that thinks that CEOs deserve millions but people who nurture lives deserve less than minimum wage is not the fault of the parents. Living in a state that refuses to pay for any caregiving during school hours (because, after all, sick kids never go to doctors during the day and nobody ever has to spend working hours on the phone with insurance companies) is not the fault of the parents. And God only has a strong hand in the first of those. (The others are often done by people who believe they are acting on behalf of God, but they are wrong.)

In the end, sometimes the best support is knowing you are not alone. Having someone who understands because they've been there. I've needed this blog; there isn't anyplace else I could say some of the things I have said and not be condemned for them by all who hear. I've always expected that I would be condemned by some. It doesn't solve my problems, but knowing that someone is listening (and not for the purpose of turning me in) helps me a great deal.

Hearts and cookies, but not heart-shaped cookies.

2011-02-14T20:35:00.000-06:00

I managed to do it. Make cookies and icing, that is. Also chop up dried strawberries and blueberries to use as sprinkles. Had them in the classroom on time, even! My little boy handles this all so very well. When it was time to dump out their bags of valentines and all that candy came out, he was excited and I had to gently tell him that he couldn't have that, but we have more cookies and icing at home. He showed a little disappointment, but then went looking to see what else he had that wasn't candy. He became very enamoured with a small Japanese bear-eraser-puzzle and managed to forget about most of the candy.

My heart test results came back. My GP says they were normal. He says I can go to a cardiologist, and/or I can get a sleep study. For-sure I'll do a sleep study. Probably not with his office, though, as the results are handled by ENTs and I just saw a new (for me) ENT today about my tinnitus. I'm going to try to go to the neurologist I used 10 years ago who diagnosed me with narcolepsy. If he can see me soon.

My inability to be awake, even on meds, and my quick exhaustion when I "exercise" is getting quite scary. The act of loading and unloading my groceries is getting noticeably harder. We went to dancing the other night and I simply.could.not. My muscles claimed they were sore after two quite easy dances, done 10 minutes apart. Tonight I pumped myself up on a Red Bull and managed to cook dinner. At one point I looked down at my hands and the blood vessels on the inside of my wrists were so very puffed out ... I'm thinking I need to take pictures.

I've started praying for a healer.

A Prayer for Valentines

2011-02-12T13:18:00.000-06:00

I'm living in a cloud.
In a pillow.
It is on both sides of my head, pressing in.
It is inside me, pressing down.
It is in my head, filling the empty spaces, and expanding.

My doctor says I am healthy.
I just feel bad because I am out of shape,
or maybe it is all in my head.
Two weeks ago my heart was tested.
Still no results.

Yesterday I managed to go to the chiropractor,
the bank, the warehouse store, pick up a child from school,
and get gas.
I could not manage to cook dinner.

Today there is nothing but cloud inside my head.
I take so much stimulant my hands shake,
but I cannot think through the clouds.
Every day my most-frequent thought is
"I want to sleep" or
"I need to lie down"

The house, my children, my life
are deteriorating from neglect.
Today I must make cookie dough
so my kindergartener, who has never been to a Valentine's day party
can participate on Monday.

He Deserves this. He has Earned it.
He Needs to participate with his peers.
He missed a week of school from the flu
He "uses his words" more and more often
He wears undies to school every day
He will get a box full of candy he cannot eat (attached
to valentines)
He happily just went and made a special card for his teacher
and didn't ask for help

Lord, give me the brain
and the hands
and coordinated fingers
to do this.
Please.

Trying to schedule the flu

2011-02-06T20:24:00.000-06:00

I participated in a great (band) performance on Saturday. But I knew before I'd started that I had caught whatever virus that had knocked out Mr L Mon-Wed and Mr P Th-Sat. It delayed hitting me until Saturday night. That was good. Now I have to hope the fever is gone by Wednesday, as we head to Dallas for Mr P's NR review -- and a new evaluation for Mr L.

Note that I had at least one kid at home every day last week. Friday was a snow day. I'm not sure Mr P will be well enough for school tomorrow. Please, can I snivel and shiver at home by myself? When can *I* sit in front of the TV all day?

Maybe heart, maybe not.

2011-01-26T10:18:00.000-06:00

The doctor ordered an EKG, blood work and a chest X-ray. The EKG had 3 slightly unusual bits, one of which he was sure was from the stimulants I take and it was "otherwise normal". He went over it with me as though I understood all the terms he was using (that's what I get for knowing so much on so many medical subjects), but I had no idea what he was saying. The chest X-ray shows a normal sized heart (I tried telling him that if you are going to compare heart size w/ lung size, shouldn't you take into account that I have great lung capacity? Like water off a duck.) I don't know what blood tests he ordered, but I'm sure it includes thyroid stuff. He's referred me for an echo cardiogram, I'll get a call in a few days to set up an appointment. He also thinks that sleep apnea is a real issue and wants me to get another sleep study done. I agree, although I'm not excited about having to be sleepy enough to go down for the night at 10 pm and not having any meds for however long they need it to be. The no meds part might be hell, and it will prevent me from participating in much life at all for those days.

I was also reminded (from the x-ray) that I have "redundant" large intestines -- I think he said about 2 feet -- of extra intestines that he could see and it goes up high and can push on my diaphragm and that will sometimes be a cause of pain in my chest area. I knew that, but had forgotten. I forget so much. It sucks.

Overall, I got the impression I got is that he doesn't really think it is my heart but he was going to be safe and run the tests. He also appeared to think he should be the one who will handle my case unless I get back some odd / bad results. My thought is that if I have anything non-standard going on, it might not be caught with standard tests.

Meanwhile I really have to focus on getting enough sleep but do my best to reduce or eliminate any ambien or valium at bedtime.

Funny, apnea wasn't the original cause of my being sleepy all the time (I showed no signs of it when I had a sleep study done 10 years ago), but I can't help but hope that if I have apnea and get a CPAP then I'll suddenly be awake and capable of doing a lot better at the necessities -- and fun parts -- of life.

I have updates on Mr P; here is to hoping I can get that posted soon!

Time to admit my body needs a doctor

2011-01-24T21:52:00.000-06:00

Why has it been so long since I blogged? See previous post!

Also, I am still not back up to speed. Physicallly I am doing quite badly. I thought it was because I've been very lazy and I've lost muscle tone and fitness, and I've been worried that it is going to be Really Hard to get back to dancing shape.

But today I went to my pdoc and I mentioned that I am short of breath after doing relatively simple things (like, I *finally* got the last section of the artificial tree taken down this morning. Tying 3 pieces of cord around it had me weak and out of breath.) You know what he says? "That isn't good. It sounds like you could have congestive heart failure." So I made an appointment to see my GP tomorrow and spent much of today worrying but trying not to worry too much because I swear I have more chest pain now.

See, that is one problem with being so frequently depressed and under great stress. I get *used* to having my "heart" hurt. Depression *often* brings with it a pain I associate with my heart. About 10 years ago I had a minor, in-office procedure to remove an infected cyst on my back ("cyst" = never-ending zit). It was badly infected and the doc had to go into the muscle (deeper than he expected to go.) The scar I have is very close to the back side of my heart, and when I am sad that scar often aches. My husband knows to put his hand over the scar as a way of helping me -- it may sound silly or "far out", but it feels like my Chi is leaking from there.

I don't have most of the risk factors for heart disease. There is no family history, my blood pressure is great and my simple cholesterol tests only once had a number on the wrong side of normal -- and I pulled it where it needed to go in just a few months. But don't get me wrong, I *have* complained about my heart to a few doctors. I remember taking a stress test once, maybe 10-15 years ago. They laughed at me because I was in great shape, my heart wasn't stressed at all. My current doc only ran basic HDL / LDL testing even though I was worried. I knew I needed more tests -- like C reactive protein. But do I stand up for myself to someone who thinks I am a hypochondriac? No. Besides, it isn't like I wanted to prove I had heart problems.

But I am pretty sure this time I do, and to the extent that my myopic GP will see and perhaps refer me on to someone else. Give me the strength to say "Yes, I have been experiencing chest pain" even if it hasn't been from the center or front.

But I am very, very scared. If my numbers are good, there aren't many meds they can give me. The biggest thing I should do is exercise, but the last two times I went to dancing I took it pretty easy but my feet and hands swelled up (I didn't know why, then.) and I knew my "easy" was still to much for my body. ... And if it isn't heart disease, why can I barely find the energy to get to the grocery store on a day I am not depressed, haven't done any housework, and have been taking my usual medications?

Yes, it is time to get myself to a doctor. Here's to hoping the doc orders the right tests.

Moving in Starfish Time

2011-01-13T22:44:00.000-06:00

See that starfish? That is me. See all those fish racing past? That is everybody else. Not just the boys, either. It is the school and the doctors and the state agencies. Now if only I could slow them down to my speed.

So how am I doing?

2011-01-08T22:17:00.000-06:00

A friend emailed to check in on me and I realize I should update everyone else too.

I’m doing surprisingly well. Whether it is that we are past the solstice, or the return to routine, or my doubling my daily dose of vitamin D, I don’t know. Also, Mr P made the decision to try again to wear underwear to school and he is generally more agreeable (probably also due to the return of his student helper.) His therapist focused on the issue this week and he agreed to answer the call of nature (while at home) based on a timer going off. The only timer I have goes up to 99 minutes so that is how long he goes between bathroom visits. This morning he was ignoring my requests that he take care of business, but I reminded him of his agreement with his therapist and then he was compliant!

I’m still spending *far* too much time doing genealogy, but that is in part because I’ve now got all these second cousins talking amongst themselves and handing over cool bits of information and transcripts of letters written by my great grandmother (who was born in an Eskimo village because her father was a missionary). It is also because life is much better when I am not paying attention to it. When I do pay attention, I have to think about my medical problems (I need to make appointments with an ENT because I've got tinnitus that comes and goes, I need to get a glaucoma check ...) and Ms A's medical and financial problems (she needs a dentist. I need to call Medicaid to see if there are any dentists. I don't think there are. So does that mean I'm going to have to pay for all her dentist appointments for forever as well as her PT and mental health appointments?) and when I try to catch up on the housework (I took down our outside Christmas lights today) I am reminded of how much I am needed for so many tasks, and I just don't want to be NEEDED. I want to be optional. A nice surprise. Or, at least, I want my hands to be two among many that work together to keep the house running. I'd really rather just not be needed. Oh, and I also have to pay attention to our finances, and that I have tons of data entry to do before I can start on taxes.

I am not currently depressed, but I can easily see why I get depressed. I can easily see the negatives and it is hard to see the positives. Or, I can see positives, but they are minute compared to the negatives.

And the mother of them all is that I will ALWAYS be needed by Ms A, who will always need caregiving and supervision and money.

Mr L's diagnostic testing

2011-01-08T21:34:00.000-06:00

A few months ago I promised you that I would post the results of Mr L's testing. (I also promised the results of Mr P's testing, but I have not yet received those in writing.) It turns out that extrating data from Mr L's report will be tricky; hopefully this will make sense. (At least I have an electronic copy of it!)

Emotional/Behavioral:

BASC-II

Teacher Rating:
Mr L's Teacher Rating Scales Report indicates Clinically Significant ratings in the following areas: NONE

Mr L’s Teacher Rating Scales Report indicates At-Risk ratings in: Depression, Withdrawal, Study Skills

BASC-II PRS DSM-IV-TR Diagnostic Considerations: (It is not within the scope of this report to make psychological diagnoses. The indicators on the BASC-II are generated by the scoring program based on psychological norms and should not be considered specific diagnoses.)

Autistic Disorder and Asperger’s Disorder
Dysthymic Disorder
Major Depressive Disorder

Mother’s [and Father's, conjointly] Rating:
Mr L’s mother’s Rating Scales Report indicates Clinically Significant ratings in the following areas: Social Skills, Functional Communication, Emotional Self-Control, Developmental Social Disorders

Mr L's mother’s Rating Scales Report indicates At-Risk ratings in the following areas:

Externalizing Problems Composite
Hyperactivity
Depression
Behavior Symptoms Index Composite
Adaptive Skills Composite
Adaptability
Activities of Daily Living
Executive Functioning
Negative Emotionality
Resiliency

BASC-II PRS DSM-IV-TR Diagnostic Considerations:

Attention Deficit/Hyperactive Disorder
Autistic Disorder and Asperger’s Disorder
Dysthymic Disorder
Major Depressive Disorder

Gee, do you think the teacher and I do not see eye-to-eye?

Gilliam Asperger’s Disorder Scale (GADS)

Asperger’s Disorder Quotient: 70(Parent) 52(Teacher)

Any Asperger’s Disorder Quotient on the GADS that is >=80 indicates high probability of Asperger’s Disorder. The parent’s rating of only 70, was a low borderline probability of Asperger’s Disorder according to the GADS norms for Mr L. The teacher’s rating of 52 was in the low/ not probable rating for Asperger’s Disorder according to the GADS norms for Mr L.

I really didn't think the school would find that he has Asperger's. I felt the GADS was a poor tool for the job. It requires observations over a 6-hour period. Parents are not testers. We can't sit behind a two-way mirror and mark off little check-boxes!

Vineland-II Adaptive Behavior Scales Parent/Caregiver Rating Form (Problem Behaviors)

A comparison of Mr L’s socialization subdomain v-scores indicates that the differences between subdomains were not significant or unusual in the frequencies at which they occur in the general-population norm sample. His Interpersonal Relationship skills (parent rating) represent a weakness compared to his other Socialization skills.

Mr L’s maladaptive behavior (parent rating) was also assessed and is found to be at the elevated level compared to the national Vineland-II norm group. His tendency toward internalization of emotional distress is at the elevated level while his tendency toward externalization of distress is at the average level.

Cognitive Ability/Processes

Woodcock-Johnson III Normative Update Tests of Cognitive Abilities (WJIIINUCog)

GIA - 132
VERBAL ABILITY - 128
THINKING ABILITY - 139
COGNITIVE EFFICIENCY - 97

Mr L's overall intellectual ability, as measured by the WJ III GIA (Std), is in the very superior range of standard scores.

Mr L's verbal ability (acquired knowledge and language comprehension) is in the superior range of standard scores when compared to others at his age level. His thinking ability (intentional cognitive processing) is in the very superior range. His cognitive efficiency (automatic cognitive processing) is in the average range. When scores for a selected set of his cognitive abilities were compared, Mr L demonstrated a significant strength in thinking ability. He demonstrated a significant weakness in cognitive efficiency or processing speed.

Processing speed is the ability to fluently perform cognitive and fine motor tasks automatically, especially when under pressure to maintain attention and concentration. Of course, this cognitive process is affected greatly by attention span, which has been noted as a challenge for Mr L. This can affect Mr L’s timely completion of written work in class and as homework. It can also negatively affect test performance in limited time situations.

He is so much like his dad on this one. My husband is a deep thinker, but not a quick one, and if you put pressure on him he just stops thinking. I am almost the opposite. My thoughts often zoom at light-speed but when the thinking gets hard, the thoughts go somewhere else.

Adaptive Behavior:

Adaptive behavior is the degree to which a student is socially and personally independent.

Mr L’s mother rated Mr L as moderately low on his Adaptive Behavior Composite score. It appears that Mr L’s adaptive behavior is not commensurate with his overall cognitive ability according to the parent rating. Motor skills was the only area rated as adequate. Communication, Daily Living Skills, and Socialization were all rated as moderately low.

Communication on the Vineland II is also rated by the parent greatly at variance from the norm referenced testing reported by this examiner and the norm referenced instruments administered by the SLP on the Speech/Language Evaluation. On both of those norm referenced evaluations, Mr L ranged from well above average to superior in all aspects of communication, language, speech, and written language.

I get the feeling that they only care about communication going out of the kid as being intelligible. It is, yes, but often so above-and-beyond what was necessary (or wanted).

Academic/Developmental/Functional Performance

Woodcock-Johnson III Normative Update Tests of Achievement

When compared to others at his age level, Mr L's standard scores are very superior in brief reading and brief writing. His standard scores are superior (compared to age peers) in broad reading, basic reading skills, and brief mathematics.

The test used is not a good one. In order for them to determine that Mr L is "very superior" in brief writing, he was required to write a number of single sentences. Spelling, capitalization and punctuation were not graded. He is in 4th grade. Multiple paragraphs are required at this level, but were not tested for at all. If they had been tested (including legibility, spelling, etc.), he would have shown as below normal.

To help determine if any ability/achievement discrepancies exist, comparisons were made between his cognitive and achievement scores. Based on a mix of cognitive tasks associated with performance in each area, Mr L is performing at or above predicted levels in reading, mathematics, and written language.

Reading Competencies and Weaknesses connected to Cognitive Processes:
Mr L meets and exceeds all grade level expectations in areas of reading, especially comprehension and word identification. .... In reading comprehension, Mr L read passages silently and comprehended factual and inferential material at the norm expectations above high school level.

Writing Competencies and Weaknesses connected to Cognitive Processes:
Mr L’s highest academic achievement area was on Writing Samples. His response to prompts was a gramatically and syntactically correct sentence that met all the specified expectations. His only frequent error was a failure to capitalize the first word in a sentence. Mr L wrote correctly by dictation words up to ten letters. Mr L struggled with his handwriting but most words were legible. Mr L also wrote as much as ¼ inch above the line at times. It appears that Mr L could profit from being allowed to write compositions on the computer as his struggles with handwriting may indeed be hampering his written expression. Likewise, his slow processing speed may limit the volume of written work he can produce in a given time.

At least the evaluator did recognize that Mr L does have a mechanical problem with getting thoughts onto paper.

Mathematics Competencies and Weaknesses as connected to Cognitive Processes: Mr L was well above grade norm expectations in mathematics calculation.

Assistive Technology

Mr L may need adaptations or accommodations other than that available to other students in general or special education. ... Based on a review of direct observation, teacher observation, and handwriting samples, Assistive Technology services/devices should be considered or the proper assistive devices evaluation conducted. Also, an occupational therapy evaluation should also be considered if one has not been conducted concerning handwriting.

Yay on this! I still don't know if we'll get an OT eval, but it is great to have this need on paper.

Summary/Conclusions

Disability Determination: Based on the information contained in this evaluation, Mr L does not meet eligibility criteria for autism (Asperger’s Disorder).

Recommendations

Ability Level Challenge:

Mr L’s cognitive ability and academic achievement in a number of areas is so far above average that special concern should be exercised to challenge Mr L in these areas of superior functioning. Some, but not all, of Mr L’s negative behavior might be the expression of frustration from boredom with academic tasks that are much below his level.

Written expression:

The examiner gave us about a page and a half of ideas on how to help Mr L with writing, including using a word processor or having others take dictation. He got a computer for Christmas and has been spending 10 minutes a day on a learn-to-type program.

----------

We got his report card a few days ago. He got Cs and low Bs.
We tried to get him recognized as gifted when he was in first grade. The school counsellor went through the motions, but I know she didn't believe us.
Mr L's IQ is only 7 points higher than my eldest's. Ms A? She has been anywhere from 69 to 85.
I am certain that Mr P's IQ is even higher than Mr L's, but I don't know that his testing showed that. I need the report!

It is the P thing

2011-01-02T17:37:00.000-06:00

My house is as upside-down as it ever was. Every time I try to take a nap (which isn't nearly as often as it used to be) the boys end up crying, one runs screaming to his room. Daddy is home. I've "let" my husband do all the NR work for Mr P. He'd reached his limit two days ago, but our student came back into town and worked today. YAY! I have a big performance in early February but can't bring myself to pull out my clarinet. I think it is because the boys are home and I know they will interrupt me mid-phrase. And I have to learn a tune by ear, which is going to be very demanding. My muscles are atrophying as I do as little as possible, although I still have to do laundry, the hand-wash dishes, take down Christmas lights ... But I think the thing that pushed me over the edge, that eats at me, is that Mr P said he doesn't use the restroom at school anymore. He holds it in. Not just #2.

I can't pretend that I don't care that my child smells of pee. I can't play with a child who reeks of urine. Mr P (oh, what an appropriate initial!) will NOT change his pull-up without threat of great punishment (like, you cannot play on the Wii until you have a clean pull-up on.) He NEVER uses the restroom, except when he has started to poo and his dad sits him on the pot to finish. So every interaction I have with him turns into a battle. "I'd love to do this with you. Go change your pull-up first." HA. Or what is even worse for me, when it is time to do his NR patterns, which require 2 adults, and he resists and postpones for 10-20 minutes, I cannot stop the proceedings just because the smell bothers me.

He is 5 1/2 years old. He has proven that he has the ability to do what needs to be done.

It has always been like this. When he was tiny, he would NOT take a bottle, so I had to give up all thoughts of going out, ever. I even had to quit a band (that then dissolved), which hurt *tremendously*. Later, when I was trying to get back into shape, every time I took him to the gym daycare -- EVERY TIME -- he went poo in his diaper, and I had to be called out of the class. I waited a few months and tried again. Same story. I stopped going.

I would have kept him in the Montessori preschool, but they would not move him up to the next class (where, intellectually, he belonged) until he was potty trained. So I pulled him out and paid through the nose for a part-time nanny. She tried everything to get him potty trained. He was fine for her when they were out shopping, but never good at home with us. I wanted to send him to exploratory summer camps, things that would catch his interest and help him turn into his own person (rather than the tool of his older brother). But, of course, that was out.

He has been at home for just over two weeks. Not once. Not ONCE has he gone pee in the toilet. If I take off the pull-up, he doesn't care. He'll just make puddles.

I know I am not supposed to take this personally. Remember, though, that I have a 19-year-old who often does just about the same thing. (She has a paralyzed bladder and must catheterize on a regular basis. But sometimes she'd rather pretend and make smelly messes in her bed and wheelchair. And she doesn't live with me anymore, largely for this reason.)

The thing is? They cannot get the "proof" they want. I cannot show them that I love them even if they are stinky in my face. I cannot stop myself from rejecting them until clean. It is a lot like trying to force me to eat Brussels sprouts. You may be able to make me eat one, but everyone around me can easily tell that I am repulsed by it. Why on earth does Mr P feel it necessary for me to prove that I love him even under the worst circumstances? I move farther away from him each day. He demands control of this house, and I have nowhere to escape other than my own brain (and genealogical research). So I am depressed and feel hopeless (and I have discovered a great many distant relatives.) I often think that I am too broken to create anything approaching a happy home, and I wonder if my being absent would really be that much worse than my being here, depressed and unavailable.

Every few months this overwhelming knowledge of being trapped takes over until I figure out how to beat it back, deny, pretend I can fix it. Then something happens, like being told my child is, on purpose, not using the restroom when the kindergarten class is sent in a line to the toilets (and, as a result, he lets loose in his pants, often on the way home, and then puts up a screaming fight when told to go change.)

Yeah. So much of my mood lately has been driven by the P thing.

2010-12-31T15:33:00.000-06:00

Every day, I try to not be too sad.
Which means, most days, I am striving to be without emotion.
I realize that while I have many reasons to not die,
I have nothing that makes me want to live.
But it makes me cry to type that,
so I need to try to go back to zombie mode.

Someday, hopefully very soon, this awful depression will lift.

I think it all went OK anyway

2010-12-25T22:01:00.000-06:00

Christmas went well. I had all 4 kids here. We all did great.
Things started to get better for me on the night of the solstice, but I know that it wasn't because I anticipated more sun the next day. No, I think it was because things had been so bad I took Abilify 2 nights in a row, and that reversed the pendulum. It went too far the other way, and I was up until 2:00 for 3 nights working on my dad's geneaology Christmas present and setting up my son's computer and wrapping presents.
And now I am completely exhausted and I'm going to bed early.

Is this Christmas harder than usual, or does it just seem that way?

2010-12-19T23:22:00.000-06:00

The hardest thing about being bipolar is that I can't take antidepressants.
I hate this time of year.
I don't want to be an evil witch horrible mommy.
I so wish that my children could have a really good Christmas.
I put all the pieces in place.
But when I am the me nobody wants me to be,
everything just sucks.
I so need to get past this.
If only it was as easy to do as it is to say.

The Power of Smell

2010-12-15T18:55:00.000-06:00

Every day is a struggle. My mood seems to depend entirely on the sun. When I was in high school I had a friend who started holding regular solstice celebrations. These continued throughout the time I would go back "home" during college. I never made it to a summer solstice celebration, but was at quite a few winter ones.

I'm thinking I'll be celebrating the winter solstice this year, even without my old high school friends. I need to believe that I am almost as low as I'm going to have to get before things start getting better.

I need someplace to hide, to process feelings and cry, but my house is full. So I will do it here.

I am starving, but the food my friend delivered gave me major gut pains just from the look and smell. And NO, I am not pregnant. This particular dish has done this to me before. I have to figure out how to tell her to please not make that for us, when I cannot specify what it is about the dish that so turns me off. I'm glad my family has been fed, but now I have to summon the courage to go into the kitchen ... but now everything I think of eating creates pain!

It is really stunning. I had been having quite a good time decorating the tree. I had some energy, I was in a relatively good mood. Then WHAM, just from a smell I cannot identify. As I write this I think to wonder if there is a food in that odd Japanese tofu soup that my father thought I had to like, and eat, *or* *else*. Because my insides are not telling the food is poison. They are telling me to be afraid.

I have an idea. I'll light a pumpkin-pie candle. If I can clear the smell out of my head, perhaps I'll relax enough to be able to think about eating.

Will Santa still come if there are no lights on the tree?

2010-12-10T23:27:00.000-06:00

This is my 22nd Christmas done for kids.
Man, I'm getting tired of it.
I'd really like one done by someone else for a change.
I usually only relax enough to get into the Christmas spirit around Dec 29th.

I'm already pretty certain I'll be up until 3 am on the 24th, wrapping presents. AGAIN.

Someday I'll remember to tell y'all what the results of Mr L's in-school evaluations are. The ARD is Tuesday. And the ~~evil witch~~ Kindergarten teacher has decided that this next week is Mr P's turn to be the Star of the Week. So I have to make a poster-board full of pictures for him to take to school on Monday. (OK, yes, she let me know this back in September. Like I've had the time to do it before now. ... Oh ... yea ... maybe if I'd done a bit less genealogy ... But around here, nothing gets done if there isn't a solid deadline looming in the near future.

Like Christmas! AAaaaaaaaaahhhhhhhhhhh.......

We had a real family dinner tonight!

2010-12-06T23:24:00.000-06:00

Life isn't all bad, although my husband had a very difficult time handling the after-school hours today. Both kids needed his help, but neither would accept it.

Even so -- and I didn't realize it until it was over -- we had a real, just-like-on-TV, family dinner! With talking! We exchanged many ideas about Mr L's science fair project. Mr P contributed to the conversation! He ATE the food we put on his plate! He asked NICELY for butter, and he didn't lick it off the cornbread and then scream for more! He was willing to try the chicken sauce (made mostly of butter and honey). Mr L said a few times how much he liked the meal. And when he was done, he went immediately to get his science fair journal so he could dictate (to me) what he'd decided to do.

Wow. Just Wow.

I also came to the conclusion tonight that Mr P may become a forensic scientist. Because for the first time ever he ate nearly all the meat off his chicken leg, and he was fascinated with the bone, and he spent about 20 minutes washing that bone, and yes folks, he took it to bed with him. (I made him put it into a plastic baggie in case the cat got into his room, and it is on his bedside table, not actually in the bed with him.) He also loves to examine his finger and toenail clippings. At least he is currently fine with throwing them away afterwards!

Some not helpful advice

2010-12-05T13:03:00.000-06:00

I went grocery shopping yesterday, and it was a very depressing experience.
So, silly me, I went to my NR support group for help in finding lists of dye-free foods. (I have a nice book that lists many, many gluten-free casien-free foods. I thought maybe there was something similar for dyes & preservatives.)
The group has not been very supportive.
- Tell your kids to just eat what you serve or make them go hungry.
- Candy shouldn't be important at Christmas. [Or ever. Sugar is SO bad.]
- My kid has survivied on just meat, nuts/seeds, fruits and veggies.
- Toss out his list of sensitivities and feed him even less -- GAPS or Paleo or SCD
- I don't like cooking either, but I am always full of love when I make my kid's special meals.

I suppose some of these are parents who went through what I am going through so long ago they've forgotten how hard it was. Others perhaps have always loved a challenge in the kitchen. Almost all of them have kids who have undergone trauma, so I don't understand how I am supposed to radicially change my child's diet without causing further feelings of hurt, lonliness, low-self esteem, etc.

What I really wanted was, from those who had BTDT, was, "Yes, what you are doing is damn hard, and depressing, and frustrating." and perhaps some advice about how to wean from our usual foods to the new ones -- and how to figure out what the new ones will be! How can I handle Mr L during all of this? Does he feel even more deprived in his life because of Mr P, or does he eat foods (in front of Mr P) that Mr P can't eat?

It is too much

2010-12-02T20:42:00.000-06:00

I have had a very hard life.
I have lived through a lot of heartache.
Many difficult challenges.
And my body steadily deteriorates.
For many years I have been stealing from my future
so I can be here now.

These past few days it has felt like the future has arrived.

I allowed myself the physical stress of camp.
Indulged in remembering,
and in living
for me.

Maybe my body could have put up with that.
But the enormous stress of eliminating half of Mr P's diet
is STRESS
and I had no reserves.

My brain is SHOT
Forgetfulness haunts me nearly every hour.
I get dizzy often.
I cannot eat; my stomach hurts after just a few bites.
I have chest pains.
My throat is tight.
I walk in public as a zombie;
It seems that if you were to look into my eyes
you would see
death.

.
.
.

I wanted to write a post that said "help". But I do not know how to be helped. Ms A's informal foster parents are out of money and nearly out of patience. I am now paying them out of the inheritance from my mother. It isn't enough. Mr L, according to the school, is not Aspergers but is likely ADHD. An ARD in about 2 weeks will tell me what they will not do for me. And I'll have to start over. Mr L's former best friend is being even meaner to him, to the point of changing the answers on his classwork when Mr L is in the restroom. The supplements Mr P is supposed to take are on order; it will be a week. Meanwhile I've found Blue dye #1 in the pickle relish I use for tuna salad. I have no idea what to get Mr P for Christmas. The piles around my computer may have never been higher. I realized just a few hours ago that buried in one of them are checks I was mailed to help with Christmas. Even when I had to transfer money out of savings, I had completely forgotten they existed. Do I put Mr L on ritalin? I know it will help him, but he is so very tiny. Maybe he has food sensitivities too. Maybe I should get him tested. Maybe my stomach hurts all the time because I have food sensitivities now that I did not have 1.5 years ago when I was tested. Or maybe I have an ulcer. If I am depressed, I should be using my light visor every morning. But I cannot use it Tue, Wed or Thr mornings because of having to take Ms A from PT to her school (Tu, Th) and because I need to run around picking up things in advance of the maid (Wed).

I'll have a cup of licorice tea (to help my adrenals) and sit somewhere so I cannot see the piles of work nearly everywhere in this house and I will read until I fall asleep again. Between errands and sleeping I haven't had a chance to shower, so maybe I should do that first. If I can find enough energy to put into my arms.

4th Grade Science Fair -- NOT fair!

2010-11-30T17:08:00.000-06:00

Two weeks ago, Mr L was supposed to bring home a packet about the science fair. Since he is in 4th grade, he is required to participate. I read the entire "what needs to be done" packet today.

This thing strikes such fear in me I can't even type!

25% of his grade will be on the notebook/journal he is supposed to be keeping. He doesn't know if we buy a notebook or if he is supplied with one. The grade includes his capitalization, spelling, punctuation and neatness. It must be hand-written. HELLO?! This child still eats with his hands because he cannot control a fork and spoon well enough to effectively get the food off the plate!

Do you see now why I am afraid?

We do not have modifications for him under 504 or IEP, yet. We're working on it. At the rate things are going, we may have something in place by February. The project is due mid January.

I just keep thinking "I never once in my life did a science fair project, but I had a great education at a top-level university and I did really well in the working world."

My son IS NOT READY for this level of work. Which means that his dad and I will need to nag nag nag nag nag nag nag nag nag nag nag nag DAILY. Right. Like that isn't going to increase the already toxic levels of stress around here.

Did I mention that the same son had his best friend break up with him to the point of hurting him physically on the playground yesterday? This is the son who has Asperger's syndrome and does not have any other friends.

All of my mommy instincts say he -- we -- need to blow off this project. He wants to be a scientist when he grows up. How is it going to help his career goals if he gets a D on his first science project?

This.just.sucks.

How to starve a child

2010-11-24T20:33:00.000-06:00

Yes, I know I said "don't look for me ...". But that didn't mean I wouldn't be here.

Today I got the results of Mr P's allergy/food sensitivity testing. (See the bottom of this post for the details.) If I do this the "right" way, he would be living off meat and a few veggies for the next few months. But everyone who reads this blog knows that there is no possible way for me to do that. So we'll take out as much of the worst foods as we can and add even more supplements -- probiotics and enzyemes and the like, to try to heal is obviously very, very hurt insides.

Even eliminating the top, most-worst will be very, very hard. Every gluten-free snack bar that he is willing to eat has either chocolate or apple in it. Apple is used a lot in "healthy" snack food.

I've already told him he can't eat blue candy. I haven't told him that actually, he may not be able to eat any candy. Or chocolate anything. My husband just discovered there is blue #1 in white marshmallows.

If we are lucky, and do a great job with the supplements and keeping him away from foods, then maybe in 6 months he can start eating them again.

Severe Intolerance: APPLE, BEEF, COCOA, WHEAT, ACID ORANGE #8, BLUE#1 BRILLIANT BLUE, BLUE#2 INDIGO CARMINE, POTASSIUM NITRATE, RED#1 CRYSTAL PONCEAU, RED#3 ERYTHROSINE B, SODIUM METABISULFITE, SORBIC ACID

Moderate Intolerance: BARLEY, BROCCOLI, GRAPE, GREEN PEA, RICE, SWEET POTATO, WHITE POTATO, GREEN#3 FAST GREEN, YELLOW#5 TARTRAZINE

Mild Intolerance: BAKER'S YEAST, BLACK PEPPER, CABBAGE, CANE SUGAR, CANTALOUPE, CARROT, CINNAMON, CORN, EGG WHITE, EGG YOLK, FRUCTOSE, LEMON, PEANUT, PEAR, SOYBEAN, STRAWBERRY, STRING BEAN, VANILLA, ASPARTAME, POLYSORBATE 80, RED#40 ALLURA RED, SODIUM SULFITE, YELLOW#6 SUNSET YELLOW

No Problems: CAULIFLOWER, ICEBERG LETTUCE, MUSTARD, ONION, SQUASH (Yellow), TOMATO, BANANA, ORANGE, CHICKEN, LAMB, PORK, TURKEY, COW'S MILK, SHRIMP, TUNA, COTTONSEED, GARLIC, BENZOIC ACID, BRILLIANT BLACK, MSG, POTASSIUM NITRITE, SACCHARINE. [Note that there are no starches here. But they didn't test for everything -- we have no clue about tapioca, for example.]

Another year, another camp

2010-11-23T11:34:00.000-06:00

Just so many things happening. Isn't that always the way? It sure seems like it to me. Mr L is reading the Percy Jackson series and I've read the first 1.5 books. I like them, but I've noticed that they make me uneasy because it feels like my own life -- as soon as I've felled one monster, whomp! there is another one.

The other day something happened and I was thinking I had far too much to blog about. Now I don't really remember what it was! Which, by itself, is something concerning enough to blog about: except when my stimulants are at their peak, my memory is shot. It so sucks because I used to be so much better than this. On the good side, I can allow myself to get side-tracked into pointless projects and completely forget that I was supposed to plan dinner or run the dishwasher ... Honestly, it isn't so much that I allow myself to do the pointless projects (usually genealogical in nature) as they are something I can do that don't tax my brain. I can, if I wish, be slow and methodical. Or fast and methodical. Or I can let my brain wander off into whatever it is curious about. In short, it is my own little isolated world, just large enough for me to handle.

In the big, scary, outside world I have only today and tomorrow to pack us up for our Thr - Sun excursion to a place that provides no linens, towels, soap, etc. It may be as low as freezing. It may rain. It may get up into the low 80's. It turns out that there is child care on Thursday and Sunday, so it won't be as bad as I feared, but I've been unable to find someone to share a cabin with who retires early (and so can be asleep near the boys).

Camp used to be an amazing, other-world, real vacation stuffed into 4 days. My husband and I bonded so much at camp, for a few years anyway. Then we had kids. Pregnancy gave me migraines and prevented me from staying up late. Small children need diaper changes (although there are plenty of welcoming arms for non-hungry, non-smelly tiny ones.) The number of items we needed to bring skyrocketed. For too many years I have gone back with the hope that somehow camp will be like it used to be. My husband and I both *love* to dance. We are, in fact, both admitted addicts. For the first 6 or so years that I went to camp, I stayed up to watch the sun rise on Sunday morning. With my husband, and a handful of other people. That sort of exhaustion does something surprisingly good to your brain. My husband and I both miss that, very much.

But after so many years of camps that I couldn't enjoy well, I no longer hold hope that the bonding, the joy, can be reproduced. We go because it is one of two things we do together as a family each year. (The other being a short summer vacation to visit relatives.) I go because the boys want to go. I go because I don't know what we'd do if we didn't go -- and because I'd have to feed them all myself if we didn't go. We go because the people there are the closest thing we have to family within 1000 miles, yet few of them ever sit with us at meal times (the boys are not fun to be around when they are eating -- not to mention how often we parents have to pop up and down to deal with their needs.) As each year passes, camp reminds me more than anything else does of the physical deterioration of my body.

But we go. And I will dance, probably a lot, probably past what my hips & knees want. (I now prop myself up with knee braces and forgo the wonderful sound of hard heels for the cushioning of dance sneakers.) I will feel some sense of community as I hold hands in a circle of 100+ people, all of us making the same movement at the same time. My voice will join with many others singing old familiar beautiful dance tunes. I will watch my boys play with friends they see only a few times a year, forging their own kind of bonds. We go because camp is Camp. My 15 years is but a drop in the bucket; some have gone for 25 years or more. The children of then are now the ones who run the place. There are a lot of reasons "yes", and I am now so happy I have written this post. It always helps to remember the reasons "yes" and not just the reasons "no".

Don't look for me 'til after the weekend.

Will he ever find the number?

2010-11-16T22:58:00.000-06:00

Thank you for your thoughts and prayers.

The judge believes in miracles and doesn't feel comfortable making a ruling so wouldn't hear testimony about whether Ms A was going to remain disabled. I've got to take it back to court when she is 21. (She is 19). I could see that she wasn't going to rule, and well, OK. I'll try again. My ex first tried to say he needed a lawyer and hadn't had time to get one in the 6-month interval since the last hearing. And claimed he'd never seen any documentation, etc. After what happened in the next step, I am *so* happy I didn't try to present any evidence on the matter! When all was over, I asked the lawyer for the A.G.'s office who was working with us to witness that I was handing my ex the stack of evidence I had brought and to please write it down so that if he tried to claim I had never given him anything, it would be known to be a lie. At that point the lawyer was so pissed at my ex he did as I asked.

Next, after an extensive battle with my ex, I was able to get the $222 he is currently paying in child support changed to $111 for child support and $111 for medical support. This should really help her (financial) bottom line as less will be removed from her SSI. He interrupted everything I said. He interrupted the lawyer. He interrupted the judge and had the lawyer, pissed, saying "You do NOT get to interrupt the judge!" He made objections about EVERYTHING, including whether I had the ability to determine what mental health treatment my daughter should get. Finally the judge allowed him to talk "out of turn" (rather than keep telling him that it wasn't his turn) and after forcing him back onto topic many times, finally asked "WHY don't you want this? It seems to me that this move is best for your daughter." "Well, because I don't know what it might mean for me." She finally made a ruling despite his not agreeing to it. Then I proposed reducing the amount my ex is paying towards his arrearages -- this also helps her bottom line as until she is 22 the arrearages are counted as her income. We reduced it by about 1/2 (he is not keeping up with the interest now, so his bill will grow). Without even acknowledging that he had been given something nice, he decided he needed to ask me, and plea to the judge, that I needed to forgive him "a little, maybe 5 thousand" of the arrearages. The judge told him she couldn't let him pressure me in front of her. Then he tried to have them say he didn't owe the money that he had been supposed to pay for our eldest son, because now that son is over 18.

I think we were in front of the bench for about 45 minutes. Clearly, I cannot possibly relate all the many ways that pathetic worm tried to slam me or try to make us feel sorry for him(!) or agrue, in essense, that the law should not apply to him because he doesn't understand it.

As we were waiting for the lawyer to create the new order for us to sign, he came over to where my husband and I were sitting and tried to talk to me about seeing Ms A. I repeated what I've said every other time he's asked, which is that I was leaving that for her therapist to help her with, and the therapist is doing a great job -- she talked to him on the phone, didn't she? Then my hurt boiled up and I said a few nasty things and had to clear out of there. After I'd cooled off and came back, he came back over again. He wanted the phone number of her therapist. I said I would give it to him when we saw the lawyer to sign the paperwork.

I took the one page letter from the therapist, on his letterhead, with the date, and I put it in the middle of the pile of evidence I'd brought. In between the reports from MHMR and Social Security and the Medicaid Waiver program and her private psychological and neuropyschological exams. And I handed it all to him. He was not pleased. "Why don't you try looking at the papers?" I said. "That will help you find it." I'd worried I'd maybe gone a little overboard, but as the lawyer got up to leave and my ex says again "Where is the number?" the lawyer said "It is in there."

I still haven't solved the problem of how to shelter the arrearage money if his house is foreclosed upon. Well, I have. I'll need to spend $1750 to set up a trust fund. But I don't want to do that until I know his house is a goner. My lawyer says she can get the trust fund paperwork done in about a week, and the A.G.'s office says that all I'd need to do on their end is set up a direct deposit into the trust fund. (Which implies having an account for the fund.) I think I need at least a two-week lead time. On the good side, I've found out that if we don't get the trust set up (in time) and the house sells and the $ all goes into my daughter's name, that she will not lose her Medicaid-waiver services -- which includes funding for caregiving, and she would not lose her ability to get into a good group home when she reaches the top of the waiting list, as that program is also a Medicaid-waiver one.

Ain't life fun?

The curtain to my soul slammed shut today

2010-11-15T21:52:00.000-06:00

Today my eldest asked for something over $300 for rent. I don't have to co-sign anything. And he moved out, complaining that I don't have any furniture to give him.

As he was telling me this, I looked at him. And I felt dead. Last year I allowed myself to love him, deeply. We talked of personal things. We hugged a few times a day. This year we've hugged maybe once a week.

Tomorrow morning I go to child support court to attempt to prove that a) my daughter needs more money than what she gets from SSI and food stamps and b) she will remain disabled for the rest of her life. I also have to remain calm despite severe hatred for and PTSD from the jerk who is her father. It is hard to snub all emotions and still talk coherently to a judge. Last time he got the last word, too. I'm scared.

I also need to decide whether to disclose that I am giving Ms A's caregivers money. I do it because they get paid $11.60 / hour, which is sh*t, and because her dad doesn't contribute anything, and because they were expecting 80 hours a week and are getting 60 ... but is any money I give them wages? The government pays their wages, not me, and the work they do is for Ms A. So it should fall under the rules of gifting. But I sign all their time sheets and do their annual reviews. Ms A is the recipient but I am the employer. So then it is wages? I just spent an hour or so on the internet and found nothing close to an answer. I bet if others do it, it hasn't been brought to the attention of anyone "important." But can I use their need for extra money as a reason Ms A needs more money from her father? Probably not. On the good side, I think that I can have some of the money he is supposed to pay be switched to medical support, which won't? count against her SSI. She has been paying an average of $350 per month for medical bills AFTER private insurance and Medicaid have paid.

And while I was looking for an answer to the above question, I read about how impossible it is to find Medicare doctors. My daughter has such a shitty life ahead of her.

Mr P has regressed even more. He spent the entire evening trying to avoid interacting with us. I tried a little to delve into what might be bothering him, but my heart was not in it. I did a lot of starting to count to 3. In order to deal with his behavior, I turned into a total b*tch. I am going to cancel chiropracty. He sees his therapist with us (mom and dad) at the end of the week. He sees her alone at the start of December. The parenting coach / attachment therapist that we were going to see (was recommended to us) has no openings. Gotta start over on that one.

Mr L pretended he was sick on Friday and stayed home from school. Mommy knew better. It had to do with social problems and his best friend drifting away. He had a three day weekend and mom reminded him a number of times about a book report he had to write. His teacher gave him an extra day to do the report, but I can't see why - unless he let her think he was actually ill. He was so angry that he had no time to play after school today.

Today, I just don't want to be a parent. I know enough to feel bad for my boys. But I am not doing a good job at living in this chaos. None of us are. I think the only one who has "won" recently is the one who just moved out.

I'm not bipolar. My life is.

2010-11-11T18:33:00.000-06:00

It is amazing how fast a day can go to h*ll.

I was being nicely productive in the early afternoon and thought that today would be a good day to take the boys to get their hair cut. It has been many months and they *needed* it. Since I knew there would be a wait, I printed up the schedule and menus for the dance camp we go to over Thanksgiving so that I could plan what classes I would take, when I could nap, what extra gluten-free food to bring, etc.

We were at the haircut place for an hour and a half.
Mr P pee'd on the floor (it somehow missed his pull-up) about 1/2 hour into being there and didn't tell anyone. (Nor did he attempt to stop pee'ing and ask to use the restroom.) I discovered it after his hair was cut. So he'd sat in the guy's special booster seat. I was moritified but remained calm. We had a change of clothes in his backpack and we changed him while Mr L was sitting on that booster seat. Mr P had been wearing jeans, so they absorbed most of the outflow and hopefully their carpet won't smell too bad.
Then when it was time to go, Mr P had a meltdown because I wouldn't let him have a lollipop. Why? I told him because he had not told anyone about his accident.

Before I disovered Mr P's surprise, I had discovered that this year's camp was planned in the most child un-friendly way it has ever been. For the past few years there has been child care for the Thursday teaching and Thursday night party. Not this year. Nor is there child care during the review sessions on Sunday.
The child care starts 15-20 minutes into the teaching sessions and despite the fact that the schedule has not gone to print, I was informed that it is "too late" to change it. "The parents will not let the teaching be disturbed". (In other words, the parents cannot participate in the first part of the teaching. This sometimes means that the entire session has to be missed, depending the teacher's style and the complexity of the dance being taught.)
There are 6 hours between lunch and dinner. That means we will all be grumpy and I have to bring gluten-free snacks for Mr P and myself, in addition to all the gluten-free food I need in order to supplement the main meals.
The child care and teaching sessions are spaced in such a way that there is a maximum of one hour of down time at a time for me sans kids, so therefore there is no way for me to nap. If I can't nap, I can't be up to enjoy the parties, which are the best part of the entire thing. The second best is some of the teaching. The only way to do my two most-favorite things is to abandon being in the band. It is so small this year, I'll feel very guilty. But that will gain me 1.5 hours of nap time before dinner.
The last day to cancel was yesterday.
This will be my 15th year at camp. There is a good possibility that I will get a "lifetime service" sort of award.
I don't want to go.
There isn't enough fun to make up for the stress.
It cost us over $600.

Today's push toward insanity

2010-11-09T00:13:00.000-06:00

Today I needed to call the Attorney General's office about the child support hearing next week. So at 9:00 the phone repairman shows up. He takes our phone and holds it hostage for about 45 minutes and doesn't fix anything. (I didn't remember that I had a cell phone. I had lots of other things I needed to do anyway).

At 9:40 Mr L's friend is supposed to show up for a play date. There was no school today -- it was a teacher workday. But the friend's sister was home sick so mom was keeping friend home too. Both my boys had been over there yesterday for a birthday party. Well, the cancellation makes Mr L wail and cry for a little while.

At 10:10 I wrap up the work I'd been absorbed in (involving insurance forms) and run to finish getting dressed so we can make it to Mr P's 10:30 chiropractor visit. I tell the boys they need to be ready, too. At 10:15 I ask "Are both boys ready?" And Mr L answers "Yes." At 10:20 I learn that Mr L had been answering for only himself and Mr P was still in his PJs and very wet pull-up. Duh. It isn't like it happens any other way on other days of the week. At least the chiropractor is very close and seems to have a pretty loose schedule.

After a good talk with the chiropractor about Mr P's regression and what neural reorganization is all about, we head out to our secret second destination. On the way, I get suggestions about small nice things Mr P would like that are not Lego. We settle on trying out a burger place that sells gluten-free buns and fries (and burgers).

The secret destination is for a blood draw for Mr P. The blood draw is to test for food allergies, reactions to food dyes and more. I've been trying to get this done for months. The lab we are supposed to use closes at 5 pm on weekdays and is not open on weekends. It turns out the lab we are supposed to use is also a walk-in urgent care center (sickness alert!) and has crackers on all the tables (gluten alert!). It also has a cable-channel suspense movie playing. I had to divert the boys and cover eyes (theirs) when the shooting started. Then the lab tells me they don't do kids under the age of 12. But this is the only place in my (large) city that has a contract with the company doing the food allergy testing!

They talk amongst themselves and decide they will do the work. Mr P, however, had very different plans. It was very stupid of me to try to do this after seeing the chiropractor. But I think he also has trauma memories from his stay in the hospital when he was two. Or maybe the NR really has him understand his body better. Whatever. The child who often has no idea he has done something to cause a bruise or a welt SCREAMED, he fought, he would NOT be diverted from his intense need to make it stop happening. After one nearly fruitless attempt, I talked with him (again) about why we needed to do this. Just yesterday at that birthday party he had a bowel accident and had to go home. We need to find out what makes it so that he doesn't know when he needs to poo. He agreed with the goal, but not with the method.

During the next attempt he did briefly calm down when I told him that if he stopped screaming then it would be over and they could take it out. (The screaming and tension prevents the blood from flowing). But when the removal didn't happen immediately, he screamed again. They did get about 1/2 the blood they needed to get, and I called the testing place and they said "Send it in, we will run as many tests as we can. Then if you can get more blood, we will test the rest."

I tried to do what I think I've learned. I told him he was safe. I told him I knew it hurt, but it would be OK. I told him I love him. None of that seemed to help any. What almost broke me was when I added that daddy loves him and he screamed even louder. Later, when one of the techs was walking Mr P around while we wrapped up, the tech who had been doing the blood draw asked how long his dad and I had been separated. How can I explain that he sees his father every day, yet still does not "have" him? This is what Mr P's evaluator has told us. Mr P is very lonely and what he wants above all else is his father. I knew when I married my husband that I was never going to have the top spot in his heart or head. I knew that, at best, I would be #3. (Work and dancing took the top two spots.) It is bad enough that I doomed myself to a life of loneliness, but I never imagined that his children would feel the way I do. I believed that having children would allow him to understand what love really was. And I was right. He understands love in a way he never could have before ... We have a referral to a parenting coach / attachment therapist. My husband wants to go. He doesn't want to have his son hurt like this.

So, where were we? 1:00 and we were starving. We drove to the hamburger place, which only had outdoor seating, but since this is Texas, it was a great day to be outdoors. They have a very nice playscape. They also have an old trolly-car type thing that invites kids to play in it, but it is a danger / work zone and there is no sign that the parents can see from where you sit to eat! They didn't seem to appreciate my suggestions on how necessary it was to let the parents know not to let their kids play there. (The small sign high on the door on the far side of the thing is enough?!) The kids meal came with a little self-inking stamp thing. Mr P stamped my minivan, my kitchen cabinets, his face ... Not washable!! Neither soap nor water nor wipe will remove it. Oh.Joy.

After getting home around 2:30 I managed to call the Attorney General's office. About 8 times. The line was busy each time.

More about Social Security and Child Support Arrearages

2010-11-05T12:03:00.000-05:00

As if I didn't have enough stress and too many things to do already.

As I mentioned a few days ago, the money my ex is finally paying for child support ($222 / month) is counted against Ms A's SSI money. It sucks, but I understand the logic -- at least for current child support payments. But until she turns 22 (she is 19 now), any money he pays toward the $25,000 he owes us is also counted against her SSI. (Currently about $120 / month). That is just wrong. I don't know how much that matters -- he lost his job (again) and hasn't paid anything for a month.

But to make matters far worse, we'd asked the Attorney General's office to put a lien on his house. My ex took out something like 3 home refinancing mortgages and he is constantly at risk of losing that home. About a year ago he nearly had it foreclosed on by the city for non-payment of property taxes.

Well, if the home is foreclosed (and sells) the $25,000 will be credited to Ms A. She will lose SSI and probably Medicaid. Without SSI she may not be able to move into a group home when her name hits the top of the waiting list. This is bad stuff. But the only way I've been able to discover to "shelter" that money is to put it into a trust fund for her -- and all the money must be spent on her (but not on necessities like food and shelter). The problem is, we've already spent that money on her. (And a whole lot more!) We covered her father's obligations to her for many years, all but one of which was before Medicaid and Social Security came into the picture.

The final kicker in this hornet's nest is that we've got a child support hearing scheduled for Nov. 16th -- 6.5 working days away.

I've been making lots of phone calls (especially to lawyers). Everyone wants to help, but so far nobody knows how. (I've had 4 calls by a clerk at a lawyer's office; they are trying so hard to figure out who could help me!) It may be that my only hope would be to sue the government after the fact. At least I know my first call for that would be Advocacy Inc. ... It just makes no legal sense that the government thinks it can lay claim to that money! She had been a child. She had not been receiving any federal or state funding.

Well, so that is where I get to focus my energies. I still have school evaluations to fill out for Mr L and therapies to set up for Mr P (and us). Not to mention getting ready to travel over Thanksgiving -- I discovered that Mr L has about 3 long-sleeve shirts that still fit. (Oops). And at least 30 other things on that pesky to-do list.

[And yes, I know I am using the complete terms here. I'm not likely to be the only one with this issue, and I sure couldn't find anything useful about this subject when I did an Internet search. ]

Mr P - cause of regression found?

2010-11-02T23:10:00.000-05:00

Back at the end of September I took Mr P to the chiropractor and he regressed. We were back to hands-down-pants and not using the toilet and tantrums and defiance ... We got some assurance that most likely the regression would last only a few weeks, but a week later we had his neurological reorganization re-evaluation and his assigned program changed. Usually a change in the NR program will bring about a regression, probably for a few weeks.

But a few days ago I said "enough", it has been 5 weeks since the initial regression. I posted on the NR support list and I had a number of parents tell me that the new patterns Mr P was doing could be the culprit. In some kids, these patterns bring up too much ick and disregulate the child. (They are, indeed, fetal patterns, and I should have thought about that earlier.) So I decided to reduce the number of patterns he does each night from 30 to 10, just to see if that helped any.

We’d done the 30 on Saturday and it was a day as usual. On Sunday morning our student helper came over early as it was a big day and Mr P did only 10 of each of the patterns. Immediately we saw a change in him to a very snuggly, “I love you”, holding hands, etc. He was very easy to handle at the Halloween carnival and did a great job eating dinner and going out trick-or-treating. Yesterday (Monday) evening we went to do patterns and did 10 of what is called the “startle” just fine, then went to do the “frog” one. After the 3rd frog, I could see a clear change in Mr P. He had a large negative reaction, but because we’d been always starting from a place of mostly-disregulated we hadn’t been able to see it before. He went from being rather calm to ... well ... he disassociated. He didn’t seem to be able to hear us, he was looking at his hands and not at any things in the room. He started to get very sleepy. My husband went to get his night-time supplement and water and Mr P wouldn’t rouse to take it. I had been holding him and letting him know that I knew that something made him feel funny inside and we wouldn’t do any more of the frog patterns that night. I tried to hold his eyes open to force eye contact. But when he wouldn’t rouse I told him I knew he could wake up, he had to try. Then it hit me to add just a bit more. “I know it is hard. I know it is hard but I know you can do it. Look at me and try.” And he roused. He took his supplements and without too much difficulty finsihed his other two (not fetal) patterns.

Clearly, those patterns are touching a place of trauma!

Today I took him to the chiropractor again. He's been going once a week on Mondays and Monday ends up being the most disregulated day of the week. I didn't tell him until I picked him up from school, and he immediately showed signs of stress. I calmed him and asked would he go if I asked the chiropractor to not do his neck? Mr P seems to get an instant negative reaction from the neck work. Mr P said "OK", and we went. The chiropractor worked on Mr P's neck in a different way, keeping him on his belly. Watching this, it suddenly hit me. I bet Mr P *is* traumatized by the neck work because it triggers body memories of having the cord around his neck at birth.

On the one hand, I feel bad that I haven't been protecting him from overwhelming stress. But on the other, I feel really great that I've been able to see some of what has been going on and I have hope that we'll get back the Mr P from mid-September who had made so many gains from NR.

We’ll keep those fetal patterns at a minimum and work through this slowly. He'll be getting play therapy soon, and that should help him process some of the ick that has been working its way out.

Is he a bride?

2010-11-01T23:13:00.000-05:00

The ninja and the ... Victorian bride ghost ?!

Does the view from behind help?

During the day, without the tulle in front of his face, he looked more Arabic. People really had no clue what he was supposed to be.

But hey! I managed to send him to bounce on the inflatable things with NO SAFETY PINS still attached to his costume. And I only spent about $5 (for the hat and the tulle).

Message to drive-by Halloweeners: Get out of my neighborhood!

2010-10-31T20:23:00.000-05:00

It started out so lovely! Friendly faces, friends, safety on the roads. But I guess we stayed out too late (little legs don't walk that fast) and by 7:45 the DRIVE UP Halloweeners took over. They come in caravans of 6 SUVs at a time, with swarms of 15+ children. One was in front of us and they cleaned out every house from there to home. They left their engines idling as they inched after their kids. (Oh joy, we got to breathe their fumes!) Others drove by too fast trying to get to the next neighborhood. (It made me feel so safe.) They made the evening end on a VERY unpleasant note for me. And would it be too non-PC for me to mention that none of the parents spoke English? I wouldn't mind if the kids were from bad neighborhoods, but these SUVs and over sized trucks were far too nice. And the cost of the gas they wasted would have paid for a good bit of candy. But mostly what I don't understand is: why can't they park and walk down the block like everyone else does? If they claim it isn't safe, don't they understand that THEY are the ones who make the streets unsafe?

It has gotten worse. I know it has. So next year we start trick-or-treating even earlier. (So VERY hard to do when the school has a carnival that day and we don't get home 'til nearly 4:00 from that. Sigh.)

Mr P was either a ghost or a bride. But he was cute.

Invisible, unfairly treated and lonely

2010-10-31T00:04:00.000-05:00

Tonight I performed with the band at dancing. I think it sucked. For not the first time I spend hours and hours practicing only to not be adequately mic'd and nobody can hear half of what I play. And a clarinet pad decided it wasn't going to keep cooperating. Probably that one bit alone caused me to feel like the whole evening was no good. ... But really, I have no way of knowing. There isn't anybody listening to me who can tell me "you sounded great on that tune" or "you were pretty tentative on that" or anything else. Mostly I ended up feeling invisible. But perhaps I was acting invisible. I don't know.

Yesterday I had to spend a few hours down at the s*cial s*curity office, telling them that I had neglected to realize that child support (even though paid to me) is actually income for my daughter. I owe over $1000 and her payments will be lowered. Even though her dad no longer has a job. For now. This is going to be a huge pain. What really sent me over the edge yesterday is that my ex owes us $25k in back support. Even though he owes that money to US, because we supported her, and we did so before she was ever eligible for s*cial s*curity, her SSI checks will be reduced for every dollar of that debt he pays. How is that, in any way, fair? It isn't. It sucks. It is another way that we have to keep paying for his being a complete asshole. ... At least I wasn't arrested for perjury.

And I've managed to upset two people because my writing has been taken too personally. My efforts to talk to others, to connect, have not been working recently.

I am, without a doubt, lonely. Deeply alone. And I have no idea how to be anything else.

10 out of 10! (Salmon with Maple Syrup ...)

2010-10-27T18:57:00.000-05:00

I just have to share. Monday night I made a dinner that Mr L said was so good it ranked 10 out of 10. (Everyone else liked it too.) What was it? Salmon w/ Maple Syrup & Toasted Almonds, Sweet potato mash and lightly sauteed spinach. So I have to share the recipe. I cut it out of some magazine some time in the past 12 years.

Salmon w/ Maple Syrup & Toasted Almonds
(6 servings)

- 6 (6 oz) salmon fillets
- cooking spray
- 1/4 cup packed brown sugar
- 1/4 cup maple syrup
- 3 Tbsp low-sodium soy sauce
- 1 Tbsp Dijon mustard
- 1/4 tsp black pepper
- 4 tsp sliced almonds, toasted

1. Preheat oven to 425
2. Coat 13 x 9 inch baking dish w/ cooking spray.
3. Place salmon fillets in coated dish.
4. Combine sugar, syrup, soy sauce, mustard & black pepper.
5. Pour mixture over fillets.
6. Cover with foil. Bake at 425 for 10 minutes.
7. Remove foil, sprinkle the fillets with almonds.
8. Bake an additional 10 minutes or until the fish flakes easily when tested with a fork.
9. Serve with sugar mixture.

So easy! (I already had some toasted almonds).

I made the sweet potato mash from fresh potatos (cut into cubes, add some water, microwave 'til soft, drain, add brown sugar and a little pumpkin pie spice). Then something I rarely do, I added a sprinking of mini-marshmallows and quickly did a light broil. I did that because Mr P has recently decided he doesn't like sweet potatoes, but he does. I wanted to make him try them again. He sure gobbled those down!

The spinach: I heated some olive oil in a big pan, added a big container of organic spinach leaves and when they were still barely looking like leaves I added some fresh lemon juice. That didn't turn out the way I would have liked, but when some of the salmon's sugar mixture got into the spinach Wow! it tasted good.

Two performances in 7 days. Do I have any brain left? Anyone want to look?

2010-10-24T23:30:00.000-05:00

I survived today. More importantly, perhaps, I survivied yesterday with no severe humiliations. That buncha people who came over, well, we practiced music I'd never played before for 4 hours. Then after a few hour break we performed about 1/2 of it that night for dancing. I discovered that performance anxiety trumps most other anxieties and for about 7 hours yesterday I did not think to worry about feeling unsafe. It was great relief. Until we were over and once again the paralysis struck me.

Next weekend is even harder. The regular band plays two long sets for dancing (their Halloween party) and the next day the boy's school does a carnival that we have to take them to. (12-3, plus cleanup), then trick-or-treating. I kinda sorta have a ghost outfit idea for Mr P. Don't get me wrong, I can really enjoy speaking with people in the short bits and spurts such events entail. But I need some serious down-time after such an events and instead ... there is Halloween!

And then, no excuses left, it is time to get serious abut getting ready to go to that dance camp.

But I'll end now; I'm too sleepy. Yay!

Where there is not trust, there is fear.

2010-10-22T18:45:00.000-05:00

Every time the alarm went off this morning (about 6 times) my first thought was "I don't want him here."

I remembered today that if we let him stay for over some certain length of time (1 month?) then he has a right to be here and we can't kick him out, even if he is stealing from us.

Lights are left on, phones aren't on chargers. And I really was already past the edge and holding on by my pinkie fingernail, so yes, those little things really do matter.

But what sent me plummeting is that I DO NOT TRUST HIM. Realizing I left him alone in the house for 2 hours made me feel ill. I bring my purse with me to bed, but because I take a sleeping pill I'm contemplating putting it in the bed with me. I had to hide my Vyvanse. But I know he knows most of the places to look -- which is one of the reasons I was worried about having left him alone. It is a good thing my husband already has my Valium hidden. But you can't hide things too far away when you have to take them every day.

I made it to the warehouse store today but when I was nearly done I remembered that I had not thought about what to cook for dinner tomorrow. Mostly I'm not thinking. A lot of sitting and staring. I have a lot of people at my house tomorrow for 4+ hours. It is a good thing that most of them have known me for 10+ years, because this place isn't getting any more ready than it is now. (Please, let me find the ability to wash off the grapes and set out the drinks...)

It just happened so fast. I was too stressed (and sick -- I've got cold sores and can barely eat) to ask the right questions during the 5 minute call. Then he was here, with suitcases full of clothes and his computer ...

"Sleep", my body and brain say. "Sleep".

Hhhhheeeeee'sssss BACK!

2010-10-21T10:31:00.000-05:00

My Eldest, that is.
His dad really kicked him out this time. Called the police and "lied?" to them that eldest had assaulted him. Supposedly, the police believed our son.
He called ... gave me a few hours' notice ... his stuff -- all of it, including computer -- is in his sister's room.

AAAAaaaaaaahhhhhh!!

He wants to join the military, but can't until this court case is cleared up. A court date has not been set.

He has a job, in the town his father lives in. He can't get there without transportation (it is a 1/2 hour drive).

To find a job in this city, he'll need me to drive him around.

And he will bug me for the $ for a vehicle.

Or the $ for a place to live.

But one of my biggest worries? There will be NO QUIET TIME. I won't be allowed to nap, think, space out, work ... This "child" has either severe ADHD or Bipolar II (or both?). And his little brothers love him. How am I going to get them to do their NR programs?

Of course, he says he's going to try to stay with a friend (who, if I got it right, is living in a hotel right now with his parents while their house is being worked on?!?)

AAAAAAAaaaaaaaaahhhhhhh!!!

===

On the good news front, I'm hiring my band leader to cook for us twice a week. She will cook in her home. She is very excited, as are we. Negotiations have gone well and are pretty much finalized. She cooks amazing Asian food (she is Japanese) and makes me love veggies I usually won't touch (cauliflower, beets, Brussels sprouts ...)

But ... my eldest ... he eats too. A lot. He can cook some, and is happy with canned soup, but I do the shopping.

Yesterday, BEFORE this happened, I was getting muscle spasms in my leg and back, feeling paralyzed by the car lights racing at me ...

.
.
.

I ... Just ... Can't.

I Can't keep him.

I Can't toss him to nothingness when I know he has major attachment problems and he keeps trying and he needs *somebody* in this world and he is my son and I love him and he hasn't done anything horrible to make me need to kick him out.

.
.
.

Does anyone in Texas have a home for a usually nice, well-mannered 22 year old? He'll sweep the leaves off your roof ...

My own personal Rage

2010-10-15T22:15:00.000-05:00

About 6 days ago I started doing a very scaled-back, but "complete" version of Neurological Reorganization. Where the boys are assigned 15-25 minutes of hands-and-knees creeping, I assigned myself 5 minutes. I also do 2 minutes of belly crawling. This is as much as my body (arms especially) can take right now. I've been doing vestibular exercises, and patterns too. I'd wanted to do this when Mr P started, and I tried, but I wasn't serious enough. Also, I had not been doing the vestibular stuff, which is pretty important to the process.

As far as exercise goes, it is great. It works the muscles that I have the fewest of, and stretches places that are particularly tight, and gets my heart rate up -- but not for long, so I seem to recover OK. I was even motivated to finally load my MP3 player and ended up listening to music while I cooked -- and bopping around for the entire time, adding even more movement into my day. All good.

But NR can stir up some deeply buried stuff. "The big bag of ick" as it is referred to on the support list. And that is most likely to happen when the client has been assigned fetal patterns. Because Mr P had been doing fetal patterns and I was copying his program, I have been doing them.

And I think that explains what happened today.

I had a full-out, complete, major RAGE. (At myself. By myself.)

Today was "supposed" to be a good day. I was hoping to be very productive, or at least productive. Or, since I am trying to take care of myself, if my body said it needed rest, I would have been able to give it what it needed, without guilt. Instead, I spent nearly 3 hours doing something that was neither productive or restful. It wasn't even very fun. I knew better, I knew I needed to try harder to stop but every time the voice that says "You don't want to do this -- you will feel bad for doing this instead of other things", every time that voice broke through I dismissed it. Until finally I really saw what time it was and I knew how much day I had lost.

I started with hyper panic. I was yelling at myself, too. I couldn't believe how stupid I had been. I needed to be able to pretend that I had been working. That meant cleaning the kitchen: empty and reload the dishwasher, wipe down the stove, do the hand-wash dishes, but first take out the recycling, oh there is the mail. And I opened a piece of mail from Social Security, to find that when I had called them 2 days ago to ask about a form I am supposed to do every year, and the lady said I apparently didn't need to do it, and no, there was nothing in the mail to me ... well that triggered an investigation and I needed to show up at their offices on Tuesday morning, which would mean cancelling two appointments. That made me angry.

Angry + panic + hyper + guilt = whamo. My yelling at myself became far more abusive. "You stupid fucking bitch!" I wanted to throw things -- my water glass in particular -- and the effort of not doing that culminated in my slapping my face (with my hands) many times, both sides, hard. I knew I was out of control and this was NOT GOOD. I quickly went and got an Abilify and took it. I wanted to bash my head against hard things. I had such intense energy that when I tried to sit my arms started flapping. I stood and just screamed at the top of my lungs a few times. I did find something not super-hard to hit my head with. That helped, perhaps because it was very worrisome. I don't know. But it changed my energy back to panic-have-to-get-things-done-so-nobody-will-suspect-what-has-happened. I spoke to myself non-stop "you can do this, you'll be OK ..." Everything I said I found I had to repeat at least twice. I kept reminding myself that I was hungry and needed to eat something and by the time the kitchen was clean, kitty litter changed, and my lunch fixed, I started being able to breathe. Good deep, refreshing breaths.

Shortly after that was when I realized I'd just had a rage like I read about on so many mother's blogs. I could see that what I'd done wasn't ideal, no. It was definitely not in my best interests and I wish I had better control over my own actions. But it wasn't worth going from figuratively beating myself up to literally doing it.

I ate and even had the time to call social security, wander through their voice maze and get hung up on by them, call them back, and talk to a human and be told to leave a message for somebody else. And then it was time to pick up the boys.

It is scary that this happened. What is more scary though is that such illogical vicious anger, such intense self-loathing lives inside of me. Where did it come from? Did somebody treat my mother like that when I was inside her? (Her father.) Did one of her personalities treat me like that? Did it treat her like that? Will I ever find a safe time and place to processes the ick? I haven't been able to come close to that level of emotion in a therapist's office (and I've been in therapy probably half my life.) Do I stop NR out of fear, or do I keep going? Do I just scale back and hope the ick comes out more slowly? Isn't it already coming out slowly, every time I yell at a family member for no good reason, or feel like killing myself, or refuse to believe that the future will be better?

Why does it have to happen like this? I was feeling so positive about the work I was doing. I was being serious about how at-risk my physical and mental health are - I was *doing* something rather than lamenting that I can't ever motivate myself. But the roots of today's rage are not just from my far-past and today's actions. Hearing Mr P's evaluation results this week has me very off-balance (I'll write more about that soon, I hope.) That would have primed me for negative action. Nothing happens in isolation.

I'm going to sleep really soundly tonight.

Ththp blbblbl brrbrb ttthhttpt

2010-10-14T00:04:00.000-05:00

The pace is non-stop.

Mr P's eval is wrapping up and we spoke with his psychological evaluator. Attachment, as expected, is a biggie. He isn't RAD, but we do have an insecurely attached, lonely little boy who is badly immature when it comes to understanding and handling his emotions. She suggests that we start by having someone teach us how to recognize his attachment-seeking behavior. We talk with her more tomorrow.

He regressed about 3 weeks ago and has not pulled out of it.

The sibling rivalry tears apart anything we try to do as a family or with one kid while the other is at home. They are both always at home. (Almost. Mr L has tae-kwon-do twice a week.)

Mr P's evaluator stressed that we do have time to change the course of events -- he is young enough and we have time before his hormones make it all too complicated. But Mr L is 9 and I don't need an evaluation to tell me that he is also sad and lonely and poorly attached -- although not as badly. He isn't much attached to me, anyway.

It is all about dad. Dad who is here but not here, who works from home 7 days a week, who is working except when a kid's need is great enough to warrant his not working. Um, yea, I can see why that isn't working for us. Now to convince him. But oops! He is an Aspie and he is living the way he always has and he doesn't want to change and he doesn't understand how he is supposed to change.

Maybe there is therapy for that.

We might be able to find the time on the 5th Tuesday at 4 am.

And I am very aware that I am often very depressed about not being able to "be me", which requires a certain amount of physical and mental health. And I fight learned helplessness because I cannot compose a plan for health that has a chance of succeeding in this madhouse.

Not enough time to go to doctors, taekwondo, play, do homework, eat, and do NR. We, bad parents that we are, have a hard time telling them not to play.

Now is the time for sleep, not writing. I'll try to write words with meaning and substance next time.

Tiny updates

2010-10-08T23:33:00.000-05:00

I don't post in a week and I gain 2 followers? Cool, I suppose.

Anyway.

We now have 2 boys doing neural reorganization. We didn't mean to do it this way. We wanted to start Mr L in February. But I goofed up and mentioned our plans at the start of Mr P's re-evaluation. So now we have a plan for Mr L. A "lite" one, because she cannot assign him all that she would after a full evaluation. But it isn't really "lite", time-wise. Just as much floor time, lots of sensory, and two standard patterns -- done twice!

I need to tell you about how Mr P has improved, but I am too tired. He has also regressed. But I think it is a 3-steps-forward, 1-step back kind of thing. He'll improve again. I just have to keep buying the overnight pull-ups for him to wear to school.

My eldest didn't take the conviction in exchange for time served. We're going to trial. Unless the lawyer cuts a better deal before then. Whenever "then" is.

Speaking of court, I get to go back to child support court next month. My ex lost his job, but I think he'll be safe from jail because he did work for a few months. What I worry about is gathering all the evidence the judge may want to prove my daughter is really going to stay disabled / incapacitated. And that she has legitimate uses for money above and beyond her SSI monthly check.

Mr P's ears cleared up so he doesn't need surgery "right now". But he does need it in the middle distance future. I want to wait until he can self-regulate well enough to handle being re-traumatized. He was very traumatized by his initial surgery when he was 2 years old.

I don't have a cook yet. I had two great possibilities, but they both withdrew their applications.

I have so much to do that I find myself not doing anything at all. When the boys are at school, I am either at an appointment for myself, grocery shopping, or ... just ... sitting ... (and feeling either guilty or deserving). Today, rather than make phone calls or deal with finances or any of the other important things I should do, I got out a scrub brush and a hose and cleaned off our deck. Hey, it was nice weather today. My to-do list is so long that Outlook only has room to display the "high priority" items.

But I'm going to "do" Halloween, even though I hate the holiday. (Read stories from people with DID and you will hate Halloween too.) Mr L wants to be a ninja. Mr P wants to be a ghost. (He has been watching The Peanut's "The Great Pumpkin" )

Mr L was invited to be at his best friend's house for Thanksgiving. My core saw that as a severe threat of abandonment and I spent a day in bed. Since when does a 9-year-old get to choose whether to spend a holiday like that with family? He doesn't get to choose. His even thinking about it made me feel terrible!

Ms A is in another bathroom strike. This is her 2nd (I think) since moving into her foster home. I try not to think about how impossible it will be for her to ever be safe in a group home.

I take pills every night before trying to go to sleep. I usually stagger to bed around 1:00. And even with pills, I wake up in fear, crying.

To my blog friends, I am sorry I have been ignoring you. I've been working pretty hard at ignoring pretty much all of life. But I keep trying to be a "good mom". At this point in my fat, old life, that is the only thing that truly matters.

Tidbits

2010-09-28T23:02:00.000-05:00

Life goes on.
In the recent past:

My husband took a 4-hour pre-test, and passed, so now he can take the test to get the belt that is one under a black belt (brown with a stripe) in a few weeks. (He is over 50 years old...)
I posted a want ad for a part-time cook. I've already got 4 applicants; none are perfect but none are horrible either.
Mr P does not have a burst ear drum. He has granulomas around his useless ear tubes. If they don't clear up with ear drops, he needs to have surgery.

In the near future:

I perform with the band, a one-hour set tomorrow night. I'll get home around 11.
The next morning, I drive my eldest to court so I don't loose the $2500 bond I took out on him. Court is at 8:30 in a town on the far side of the city I live in.
Next week we return to Dallas for Mr P's neural reorganization re-evaluation.

I'm pretty sure that nobody would have approved me to be a parent.

2010-09-25T14:17:00.000-05:00

Today should have been at least a reasonably good day. But Mr P woke up on the wrong side of the bed and he cried for so many non-reasons that I got a migraine. I almost re-gathered courage and strength to take the boys out to get shoes, when Mr P got in a fight with Mr L. (Mr L, however, wanted nothing to do with it, but did not say anything, defend himself in any way, and was slow to remove himself from the battle zone.)

Me? I disassociated. I've gone and hidden inside myself and I feel bad and guilty because I know the boys need me to be their mom. I need to figure out how to get out.

Mr P's evaluator tells us he has dysthymia (minor depression). He is very lonely. I'm pretty sure Mr L feels similarly. They both worship their dad. They never come to me when excited or hurt. I do not wonder why. I want to fix that. But the stress of the non-fight and its aftermath have left me with a strong, strong urge to go to sleep.

I have never found any advice on how to stop, or cut short, this sort of disassociation. Going to sleep is all that ever worked for me. Clearly, it does not work for my family.

(What does it feel like? There is a cloud or cotton barrier between me and the world. I can see, but my sense of peripheral vision feels more limited. I can think, a little, but I can stop thinking too. Clearly, I can type. But I am detached -- from emotions, from living. I can sense that to come out of this risks great emotional pain, and I can feel fear at the thought. Being like this doesn't dampen the negative emotions all that well. The sounds of anger from the other room sent me into "be invisible" mode ... )

Message to the universe: are you listening?

2010-09-23T19:56:00.000-05:00

I so need to decide to hire another cook. But my kitchen & pantry have not recovered from the last one. Also, I just really don't like having other people in the house. At heart, I am one of those "I don't like people" people. I like having control and authority in my kitchen again. But wow! this is hard. I have to shop at a minimum of two grocery stores a week, and I think my 4-week total would be 12 trips to varied grocery stores. That is, with commute, about 18 hours a month just for the shopping part. Not only is there no single brick-and-mortar store that sells all the different gluten and diary-free foods that we need, there is no single website that carries them all, so I can't pretend to save time by shopping online. (The one time I tried it took two weeks to get the food I ordered. Right. No.)

I've been searching online to find someone who cooks gluten-free and delivers, but no luck so far.

Tonight I made a wonderful chili (Beef Chili with Butternut Squash and Chard). I found the squash pre-cut at the warehouse store yesterday and had been eyeing this recipe. I've never cooked with chard before. But it took 2 hours even with buying as much as I could pre-prepped. I started at 5:00. Oops.

I figure if I keep letting the universe know that I have a need, there is more chance it will get filled. Unfortunately, I also know that I have to be ready to have that need filled and I know that being very specific about what I need is also extremely helpful.

Sigh.

Niacinamide

2010-09-20T18:32:00.000-05:00

A few weeks ago when I was feeling really bad, I made a post to Dr. Bob's Psychobabble. (link on left). One thing that someone advised is to consider taking niacinamide, which is a non-flushing form of niacin (vitamin B3). He said that it could be effective in counteracting the side effects of amphetamines. I asked my Neurogistics practitioner and she didn't think it was my best option (she recommended increasing my magnesium instead) but said I could try adding B3.

It took a while to find the niacinamide; I finally found it yesterday. I took one pill today, in the mid afternoon. My brain is such an interesting place. I got a sort of a migraine, with the "pain" on the upper left. It became hard to breathe, like it is when I have no amphetamine inside me. I felt more seizure-like than I have in a long time. My brain is not functioning, or, actually, it is, but entirely different regions seem to be "on-line". The left half feels "on", the right half "off". I think that is the opposite of what I noticed when I went on Tegretol.

I went online to look up side effects. Turns out niacinimide interacts with Tegretol -- making the Tegretol leave the system more slowly. Hmm. If anything I would have said it flushed the Tegretol out of my body. I feel like I've got too much seretonin. And I have more muscle tension! (Guess I won't be taking these again). The half-life is 4-6 hours, so I'll be normal by bedtime. Good!

Small viruses

2010-09-18T23:53:00.000-05:00

I haven't been writing because, well, I haven't been doing much of anything. I've been battling a number of small viruses that Mr P has kindly brought home. (At least I think he is the source). My adrenals haven't been up to it. Acupuncture last week helped me feel better for about 2 days. Last night I slept for over 10 hours. On the good side, I haven't been depressed.

Mr P has also been battling the side-effects of small viruses. About 5 or 6 days ago he said something about his ear hurting, but he didn't complain much and didn't mention it again. Then two nights ago he said again his ear hurt. This time he was more adamant about it and we gave him Tylenol. The next morning he said it still hurt, so I kept him home and took him to the doctor. Doc looks in the ear, says "yup, it is bad". He turns to the other ear and says "Oh, my. This one is much worse. There is a rather large hole in the ear drum." Mr P just doesn't have enough sensation to complain when his eardrum is about to -- and has -- popped. That is scary. So he gets to visit with his ENT on Tuesday.

Tuesday is a big day for us and boys. First thing in the morning we meet with the school diagnostician to talk about getting Mr L tested for ADHD and Aspergers. At lunch time we talk with the doctor who has been evaluating Mr P about her findings so far.

I need to get better. I need the energy so I can participate in my family.

We have lift-off!

2010-09-12T22:10:00.000-05:00

It has been so exciting watching Mr P these past few weeks. He loves kindergarten. And his brain? Well, it is now

READY TO LEARN.

YAY!

A month ago, he was mostly guessing about what sounds were in a word. Now he can't seem to stop noticing all the sounds in the words he hears. A month ago, he wasn't "into" doing anything with pencil or marker. Yesterday he wrote the entire alphabet on his daddy's blackboard, with only a few clues about how to make the letters. Because he couldn't remember the entire alphabet for the time it took to write it, every time after he wrote a letter, he would sing the alphabet song until he got to the next letter. And he always knew where to stop! I spent about 3 minutes with him telling him how to correctly make a "P", and now he does it correctly! He went over to the keyboard and played each key while saying the proper letter ("C", "D", etc.)

When Mr L is around, the two of them play with Legos. When Mr L is not around, Mr P is often playing school teacher or circling things that start with ...

He has only had one somewhat bad day (he was reprimanded twice), and even though he chooses to wear a pull-up to school every day, he has not had another accident (which would be from filling the thing up rather than using the restroom).

Things aren't perfect, but they sure are nice. We'll never be able to prove that he wouldn't have done this well without any interventions, but I continue to be glad we're doing them. (We've just completed day 73 of Neural Reorganization and he's been on Neurogistics supplements for nearly a month). Speaking of the supplements, we know they help at least a little because he gets a lunch time / just after school dose. On the weekends, at some point after lunch time he will reach a point of disagreeableness when we look at each other and say "Oh! He needs his supplements!"

Labor Day

2010-09-06T17:47:00.000-05:00

Well, Essie has encouraged us to write our Labor stories. I've got 4.

I had written up three of them when Blogger exploded and lost all but the first and a bit of the 2nd. I don't have the heart to write it again. What is the [swearing! swearing!] point of having a "saving" every 10 seconds if when it blows up you lose 30 minutes of work?

Kid #1: I was so afriad I wouldn't know when I was in real labor that I went to the hospital way too soon. I had been not eating anything because I truely HATE getting sick. The hospital gave me the "medicalized" birth that 24-year-old me thought I should be having. They induced me. I decided on an epidural pretty quickly, but the doc had an emergency to deal with so it took a few hours before I got any pain relief. Then I nearly feel asleep during transition. I was doing a great job pushing, but was giving up because I thought there wasn't any progress. The darn baby was crowning and nobody told me! My eldest was removed (face-up) with low forceps. It was a very medicalized birth and I didn't feel good about any of it (except the baby at the end).

Kid #2: She dropped 3 weeks before she was due, which had us all in a panic. But apparently she didn't drop all the way and labor didn't start until the right time. Because my MIL was living with us, I did not tell my husband before he went to bed that I knew I had started labor. (She would have been so panicky!) It went slowly (just like the first one) and I had a scheduled OB apt the next day. Husband and I went in at 10 am, doc said, "Yup, today, but baby hasn't dropped far enough. Go walk. If you aren't in full labor by 3, call me and go to the hospital and I'll induce." I walked. It worked. At about 1:30 I told hubby to call the doc. He didn't. At 2:00 I pulled myself downstairs and asked him when he was going to call? He said "3:00". I said CALL NOW. I heard him say "about every 10 minutes" and I yelled "try 4!" We went to the doc's first. I was at 6 cm. By the time we were checked into the hospital, I was at 8 cm. "Sorry, hunny," the nurse said, "there isn't any time to give you pain meds." My daughter was born shortly after 4 pm.

And here is where Blogger completely messed me up. I don't want to go through those emotions again today. The short story is that I didn't get to hold her until the next day. I was alone in the maternity ward without a baby, I didn't know or understand what was wrong with her ...

10 years later ...
The next two were entirely natural, at a birthing center, with a midwife.
My 3rd was crazy-making painful, I went catatonic, he was born in the tub where I had been laboring because I could not move. He was, of course, face-up.

His birth was *so* painful that I panicked every time I thought about giving birth to kid #4.

So for kid #4 I hired a doula.
- False labor I didn't realize was false (!) on Friday lasting over 10 hours. (I didn't know a 4th time mom could be fooled like that).
- Final labor started 1 am Tuesday. I putzed big time for 26 hours, slowing to even 30 minutes between contractions, never more than 8 minutes.
- At 3:00 am I suddenly switched from 8-15 minutes to 2 minutes apart. Woke the doula, who was sleeping on my couch, and husband and we were at the birthing center by 3:30.
- Exam showed me at 3 cm -- and before her fingers were out I jumped to 5 cm.
- Doula was amazing! I was stunned at how much I wanted and appreciated the physical touch. She kept me on the birthing ball during entire 1st stage. Water broke at 8 cm. (Just after 6 am?)
- Moved to bed, started pushing at 6:25. Two pushes to crown. (Kneeling facing headboard). Told to move to side lying -- mind was willing, body was totally stumped as to how?! I ended up being pushed over by doula with husband to catch me.
- Mr P was born at 6:32 (Yes, less than 10 minutes in stage 2). Midwife worked very hard to prevent me from tearing; she succeeded!
- I had breathing room between my transition contractions.
- He was born “face up” and had the cord wrapped around his neck twice!

Now I need to go labor in the kitchen.

Five days seems to be the most I get at a time.

2010-09-04T20:55:00.000-05:00

Yesterday's worry about Mr L sent me into a state of disassociation that was pretty bad. I felt removed, separate, zoned ... I went to bed around 9:30 and with no medication slept 'til about 8.

I woke up in physical pain; my muscles seemed to be all locked into place. I stretched for hours, used a heating pad, tried to do gentle warm-up movements, got my husband to rub my back and neck. I had Vyvanse (dextroamphetamine) inside me - an 8-hour-pill, but really felt I needed valium to relieve the muscle tension. That just seems wrong, taking two drugs like that. So I posted a question about it on Dr Bob's Psychobabble (link on the left side of this blog). I got answered pretty quickly, and some good responses too. Before the first response, though, I realized I hadn't taken any advil and maybe inflammation was making things worse. The advil did help enough to keep me going.

So I want to share some of the advice I got:

using amphetamines and sedatives (barbiturates, low-dose antipsychotics, or tranquilizers) either in combo-pills like "Dexamyl" (dexedrine plus amytal, a barbiturate) or as separate prescriptions to be taken around the same time/day, used to be a pretty common practice. I'm just giving you a little history lesson so you can see that it's not necessarily a bad thing. I know it seems far from ideal, but I think its important to do what you need to do to keep going and functioning. My concern was that some of your problems might be stimulant-related--do you think that's the case? Have you considered a dosage reduction, or maybe a switch? Its kind of a long-shot, but they do still prescribe Desoxyn (methamphetamine) for narcolepsy. Its more potent that d-amphetamine, so you can get away with lower doses, which often means fewer side effects. The downside is that its expensive and rarely prescribed, and I think its dosed 3x daily, which kind of sucks.

Have you tried any supplements? I'm not a supplement guru or anything, but I have read on a number of orthomolecular psychiatry websites that niacinamide (the non-flushing form of B3) can help with anxiety and tension (acts kind of like a benzo, and makes benzos work better at lower doses) and may help relieve problems associated with amphetamine use. I personally take 6 grams daily, in 3 doses, to help with my bipolar disorder....its done wonders for my anxiety and my skin (oddly enough, high dose niacinamide can help rosacea. They also put it in wrinkle creams).

Anyway, I hope everything works out OK for you. Whatever you do, don't beat yourself up over taking meds you need to function; the last thing you need when you have to take meds is guilt over having to take meds.

Good luck.

I answered those questions, and responded to someone else who said the answer was to eliminate stress in my life. Then I got this one:

I would guess your muscle tension is caused by chronic stress due to your difficult life circumstances. Myabe you need a break from your family now and again, so you can get a message, sit in a whirlpool, exercise. Is that possible, to get a caretaker or have your husband give you some time off?

Sigh. I love that people care, and they try to help. But I'm needing to reverse about 20 years of chronic stress. It is just that days like today make me feel so hopeless in this battle. The stress *is* killing me. And the meds I take in order to live today *are* robbing me of quality-of-life already and it will only get worse.

So I decided to not go to a "wine and cookies" birthday party and instead stay home and take that valium, only now I'm afraid to climb into bed for a "good night's sleep". Maybe I'll try sleeping in my recliner.

I've always heard 4th grade is where the s*it hits the fan. We're so not ready.

2010-09-03T17:19:00.000-05:00

Yesterday was "Curriculum night" (I think of it as "back to school night").

Mr P has the same kindergarten teacher Mr L did, but we went to hear her presentation anyway. Mr P has been doing well; we've seen progress in his writing in the 2 weeks he's been at school. I still feel like I'm holding my breath, but he is enjoying being in Kindergarten and she isn't giving us dirty looks.

I didn't have any expectations about Mr L's class. I sat down, and then it seemed like everything she said had me more afraid for him, for his ability to succeed this year. ... We have a pre-ARD meeting scheduled with the school for Tuesday morning, and I sure am glad!
- He told us that they are doing something other than "AR" reading this year, but he couldn't explain what. [No. AR as usual. He is surely already behind on his points.]
- He started doing his 30-minutes-a-day reading on The Hobbit. (Wow). But then after 2 days he says he decided he wouldn't be able to get the book finished in time (for what?) and he switched to reading -- get this -- The Dumb Bunnies. And either his teacher has no clue or he lied to her about the level of the books. He's already read them many times.
- On Monday he brought home a spelling list and a list of about 10 possible things he could do (to turn in) that would count as studying. He told me that the teacher said that for the first week they only had to do a little bit, and refused to do any of them. On Tuesday he forgot the list of things, but he did remember one thing and did it. On Wednesday he forgot the list of things. On no day did he actually try to study his spelling words.
- On Wednesday evening I looked at his homework log and it said "Report due Tuesday". What report? He had no details, except that they got to choose a scientist, and he chose a mathematician. Who? Sir somebody, and he invented calculus. (That would be Sir Isaac Newton.) I found the instructions for the report in his desk at school. Many things to find out, needs to be typed into the computer! On our way out of the school today I asked if he had the instructions for the report. No, of course not. We went to his classroom and he couldn't find them. I knew exactly where they were. They hadn't moved.
- The teacher showed us parents how their science notebooks were supposed to work. She pulled out a sample, and there was a sheet glued in and writing on the other page. I looked at Mr L's. Absolutely empty. I asked him today why he hadn't done his science notebook work. He said because most great scientists are not understanded in their time. (He wants to be a scientist). After I told my 4th grader that the past tense of "understand" is "understood" I told him that was not a good answer, try again. So he said he hadn't had the time to finish. He had only just found the glue when the time was up. The glue was in his desk. "Don't you have your stuff organized?" I asked. "Mom! It is only the start of the year! I haven't had time yet!"

Oh.Good.Lord. I believe this is the worst first 2 weeks of school for any of my kids, and I have 2 that have gone all the way through 12th grade. (Granted, I don't remember the details of all of my eldest's starts-of-school.)

Has he stopped trying already? Can / will the school put enough supports and services in place to allow him to be successful? Am I going to put all the money I "save" on not having a nanny into private school? Can one make a living designing Lego artillery?

I know! I should cook the Lego men!

2010-09-01T23:37:00.000-05:00

We've made it to day 60 of Mr P's NR program. Dinner is less stressful (but not stress free). I think he sometimes wears undies to school. I've noticed fewer accidents. I hired a college student (a male, a sophomore) who is GREAT. I'm running out of Legos and need to buy more. I bought a table to put them all on so maybe they'll stop rolling under the stand-alone freezer.

I am pooped. My husband is over-stressed. Some of it is the heat. Some is from getting up earlier and a vastly changed morning routine. Some is from having homework to check. A lot is from doing the NR program. A whole lot is because I have to do all the shopping, cooking and kitchen cleanup. (I don't mind the extra laundry).

I just don't get it. Creating a dinner that doesn't come out of a box seems to take *at least* an hour, no matter how "simple" the recipe. (I've found most simple "meals" do not have all the necessary parts of a meal -- like veggies, or sometimes carbs.) But gluten-free out of a box (ha!) costs at least $15 and still needs something more to make it complete. But I suspect some of my problems stem from the fact that there are a lot of foods I won't eat. Those are probably the ones that can actually be made in less than 1/2 hour. (And, as all moms know, the kids hate whatever it is you cooked.) On the good side, I am proving that I can do it, and I am cooking things I've never tried to cook before.

Still, I need to find the time to write a job ad so I can start the painful process of trying to interview people who learned how to cook by watching the Food Network or who say their speciality is cheese dogs.

But first, I need to sleep.

I cooked what?

2010-08-30T21:18:00.000-05:00

I made dinner tonight.

Yesterday, I sat down and (although it took at *least* an hour), I planned out what we would be eating every day this week. I planned dinner around when people are at TaeKwonDo and when Mr P's "play buddy" is here to help him do his NR work and when I'm booked from 3-5 so I can't actually cook anything.

Tonight, for the first time ever, I made stuffed peppers (with a Moroccan sort of flavored ground meat). This is one of the only ways I know to make peppers palatable. And they were yummy. Also for the first time ever, I made quinoa (cooked in a veggie broth & w/ parmesan cheese on top. Yum!) Of course, we ate about an hour later than usual.

And I don't think I've mentioned that the band leader cooks dinner for all the band members on Tuesday nights. A while ago she made the first cauliflower I have *ever* enjoyed eating. Last week she made brussel sprouts and beets. Two of my very least favorite foods. But they were yummy! (The woman is amazingly talented at so many things.)

I know this news will make at least one of my regular readers happy.

My kid is at school all day and I still don't have time to sit down.

2010-08-30T12:06:00.000-05:00

I've got tons to do.
Really.
And I'm working hard at not lying down in a dark room and crying.
Even though I gave myself permission to do that, after I took my morning medications and supplements.
The pills work at least a little.
I need to open the curtains. Let the light in, even if heat comes with it.

All the standard reasons to be sad.
And a new one.
My last baby is gone. He isn't at the store with the nanny, or taking a nap. He is at school, and he will be there tomorrow, and the next day ...
Throughout his entire infancy and toddlerhood I said I didn't know how I was going to make it when he got bigger.
I tried to plan for this day. I wanted to be back at work. Grown-ups to talk to, meetings to be at, work that challenged my brain and kept me up and excited.
But my body and brain couldn't stay stable long enough for me to stay on track with training.
I need more time to prepare.

I need to rest, recuperate. Give my adrenals a chance. But 3:00 will hit and then there is no rest until Wednesday morning. (Tomorrow is jam-packed full). The next bit of down time will be Friday morning. But during "my" time I need to shop and start dinner prep and handle finances and phone calls to Medicaid and get Mr P's desk ready for his first homework time ... which is more stressful? Doing the work and not getting a chance to let my body rest, or knowing that important things are not getting done?

Scumbags Unite (edited)

2010-08-27T08:21:00.001-05:00

On top of everything else, property that was stolen from M because it was in his truck is about to be destroyed because he can't get from one podunk county to another, he has no phone, he won't answer emails (or can't get online), and he says he doesn't care. I could forge a letter and drive down there myself -- close to a 2.5 hour round trip. I'm thinking maybe I should ask M's lawyer for what options I have, but, really, once the very, very ickly lady decided to turn the property over to the sheriff, he now has the right to at least demand a release signature from M. I'm so tired of being tied up with scumbags.

Mrs. Struggling-To-Stand,

I am not sure if you got my email dated 08-24-10, advising that M's property needs to be removed. I know that we talked about what I need to release it. I have informed you, and I have informed M.

When I got back to the office after being gone 2 weeks, I was informed that it was still here.

If you will bring something in writing, with an original signature from M authorizing you to get his property, we will be happy to give it to you.

If not, M's property will be disposed of in 30 days. Please respond to this email so I at least know someone got it. I have no contact information for M other than his address in [small town]. It would be a shame if his property got disposed of due to inaction on his part. However, it can't stay here indefinitely.

Detective R
[Bubba] County Sheriff's Office
Auto Theft Task Force

When is someone gonna call CPS on the school districts?

2010-08-24T16:21:00.000-05:00

It is 107 out there. (Actually, weather.com says it feels like 108).
And I have to walk past a line of idling cars, motors on, to go pick up my kids from school. Almost no shade.
Then all 3 of us have to walk back.

Remember when kids got out of school for the summer so they could help with the crops? Neither do I.
But look, if you're gonna have them out for "summer vacation", why does school start up again during the HOTTEST part of the summer? And then let the kids out during the HOTTEST part of the day?

And me, coordinated mom that I am, ran out of popsicles yesterday.

While I'm at it, lets all give a roudy "Welcome to Texas!" to GB's Mom. (What a silly time of year to visit!)

The first day of school

2010-08-23T21:55:00.000-05:00

Mr P went to his first day of kindergarten today. He came home wearing the same pants that he was wearing when he started. That's good. The first thing he told me was that he took a nap at rest time. That is also good. My husband pointed out that Mr P is the only one to have gone through the day in a reasonable mood.

Friday was the nanny's last day. I keep calling her nanny, but she was more cook than nanny. I found so many dirty dishes put away today. More than usual. Also rancid grease under the cook top. That didn't help.

I had to get up at 6:30. That really didn't help.

I thought often of the money we'll save and that my house -- especially my kitchen -- is under my control again. That did help.

My husband (with a little help from me) managed to do ALL of Mr P's NR program today. Wow. I think I've hired someone to help with the NR program on Tue, Wed & Fri. I'll find out if / when he shows up tomorrow evening.

I've been working on remembering to give Mr P his Neurogistics supplements (he gets them 3 times a day). Today I remembered all 3 times. But I forgot 2 of my 3 times. Oops.

My body was finally screaming at me loudly enough for me to go to a chiropractor. This one took x-rays. I liked that. He also takes insurance. I like that too. And he is really close to where I live, which is necessary as I've seen him every day so far. Like I needed the extra stress. But you know what they say about pain. It is the body's way of saying that something isn't right ...

Tomorrow I get to start picking Ms A up from her physical therapy and taking her to "school". 9 am every Tuesday and Thursday. Oh. Boy.

Because I have to set my alarm for an hour before I get up in order to take my stimulant, my husband will be sleeping in another room on weeknights. I'm going to miss him.

Maybe I'll be awake enough in a day or two to write more than one-sentence paragraphs.

I'm still stressed

2010-08-18T22:11:00.000-05:00

I cannot figure out an easy way to paste a table into here. You'd think that something that starts out as an HTML table can be "cut" as HTML and plunked into here. Nope. Can't get it to work when I go through MS Word first, either. So I'm not going to show you the results of my most recent Neurogistics testing. I'll just cut-and-paste what the practitioner says.

"your adrenal hormone panel indicates that you are still under a great deal of stress"

And here I've been checking "moderate" whenever a questionaire asks me what my stress level is.

Although tonight, I do feel very stressed. The nanny has a new job, her last day here is Friday. The first day of school is Monday. Mr P has become Mr Poop again. It took 30 minutes to get 10 minutes of belly crawling out of him today, and that was actually quite a quick session. He needs a new-and-different motivation every session! I've had no reasonable applicants for the job I posted to be his "play buddy" (aka Therapy Helper, but that would scare off all the students.) And my 8-hour vyvanse "dip" in the middle of the day has turned into a canyon.

[Well, I did figure it out, sorta. This still wasn't easy enough for my tastes.]

Neurotransmitter/ Amino Acid	Current Results 08/18/2010	Optimal Range	Plays a Role In:	Excitatory/ Inhibitory
Serotonin*	152.11	175-225	Sleep cycle, depression, anxiety, carbohydrate cravings, PMS	Inhibitory
Dopamine*	22.54	125-175	Focus, attention, memory, motivation/ drive, mood, addictive disorders	Inhibitory/ Excitatory
Norepinephrine*	16.9	30-55	Energy, drive, stimulation, “fight or flight” response, insomnia, anxiety	Excitatory
Epinephrine*	1.18	8-12	“Fight or flight” response, metabolism, energy, depression, cognitive function	Excitatory
Norepi/Epi Ratio	14.29	3-6	Ratios < 3 = restlessness, over-training Ratios > 6 = stress, tiredness, lack of focus, energy & motivation “burn out”	Excitatory
GABA*	805.63	550-750	Reduces excess stimulation	Inhibitory
Histamine*	35.21	20-45	Responds to allergy & inflammation, low levels cause lethargy	Excitatory
Glutamate*	7.44	5-15	Agitation, sleeplessness, depression when low	Excitatory
Creatinine*	71	10-250	Determines whether sample is viable for testing (hydration/dehydration)	N/A

Adrenal Hormone Panel

Hormone Tested:	Test Result 08/18/2010	Reference Range:	(Approximate) Collection Time Period:
Cortisol I	6.5	5.0-22.0	6-8 a.m.
Cortisol II	5.7	1.8-9.2	12 p.m.
Cortisol III	3.3	1.0-6.1	4 p.m.
Cortisol IV	5.3	0.5-2.75	8 p.m.
Cortisol V	4.9	2.0-7.9	12 a.m.
Cortisol VI	3.4	0.92-6.1	4 a.m.
DHEA-S I	1.2	2.8- 12.7	8 a.m.
DHEA-S II	1.5	2.7- 9.0	8 p.m.
DHEA-S III	1.7	1.8- 8.1	12 a.m.

Practitioner's Notes:

... your adrenal hormone panel indicates that you are still under a great deal of stress. We can discuss these results tomorrow during our phone consultation.

Lawyer apt for the eldest, and fallout.

2010-08-16T17:07:00.000-05:00

After I got my eldest out of jail, he went back to the town his father lives in. I got a call from him on Saturday, he needed to get into the city to see his lawyer on Monday, and he needed to go to the Dr. because he'd been sick for a while and thought he needed some drugs. So I drove out there yesterday (Sunday) and got him. He went to the doc; he has a bad sinus infection. He hadn't done anything about getting his stuff because he doesn't have a car. He'd cancelled an earlier lawyer apt because he'd been sick.

I took him to the lawyer today. Turns out the charge was dropped from a felony to a misdemeanor, which seems good, but it is harder to prove innocence. (But wait, I thought, I paid a retainer fee based on a felony charge!) Rather than going to trial, they might just ask for a sum of money. (Excuse me? If anything, we are the ones who are owed money at this point!)

On the way home, my child pointed out that in a way, this lady stole from him, as he'd paid $ for the truck and now he has no truck. (As had I paid -- more than he had -- on maintenance on that truck).

And then he did the expected. He asked for a "loan" so he could buy a cheap vehicle. Because once he can get around, he'll be able to have his job in the small town and not live at his dad's and drive into the city a lot. "It is only $5 in gas to drive in to the city." He says. Also "insurance is cheap, it is $80 a month." Uh-huh. "Mom," he says, "when was the last time I asked you to loan me $1500?"

I pointed out that he needed to at least wait until I got the $2500 back from the bail.

Then he said "Well, I wouldn't need that much, maybe just $500 for a down payment and I can pay a few hundred a month." The rest of the story is that he could put a few hundred a month towards a car only if he was not living with his dad because ... HIS DAD HAS BEEN CHARGING HIM $200 A MONTH TO LIVE THERE. And he has been paying it. When he doesn't pay it, his dad files eviction papers and has called the police to get him removed from the house.

Now, I'm all for a parent not being abused by a child, and that may well mean a parent charges a child rent. But this is a house that couldn't get that much in rent if the man tried to rent the entire thing out -- furnished. Not to mention how much money his dad owes him from the many years he didn't pay child support.

And I note that my son has been paying money to his dad, but has not paid me back a single cent of thousands of dollars he owes me either from "loans" or outright theft or necessary legal fees.

I have a *great* deal of anger towards his father.

I feel terrible. My son has not done enough to "prove" he is a good investment. (For those who don't know his history, let me put that another way. My son has not had enough opportunity since his last failure to show that he will put money toward "good" things like car payments and rent rather than excess food, gambling, and the like for me to feel that anything I do to help him will, in fact, be helpful.) About the only thing he has done that helps his case is that he had a truck for a year and did not get it totalled.

It is a witch's brew
Full of spite and fear
The stuff inside the cauldron
is anything but clear

What does "memory" mean?

2010-08-11T23:29:00.000-05:00

I haven't updated about Mr P's NR program recently. We're still doing it. (Actually, his dad has taken the lion's share of the work recently.) I've seen some back-sliding, but some of that is due to the constant presence of his older brother. They play with eachother *too* well. They can't ever seem to stop playing, and that not only gets in the way of the NR program, it gets in the way of dinner, bedtime, grocery shopping, etc.

Today Mr P (when he wasn't at daycare) was in his full "What is?" stage. As in "Please put on your shoes." "What are shoes?" He knows it annoys me. But he's found a particularly tricky game because he'll start with something less obvious. "Don't splash the water." "What does splash mean?" His dad got that one this morning. And dad easily answered "to make the water jump up". Maybe this type of questioning irritates me so much because I don't have instant (correct) answers like that. My train of thought is derailed as I try to find an answer ...

Also, I'm a grouch, and my being disregulated doesn't help Mr P any. I don't know if my grouchiness is because I'm ready for the boys to be gone from the house, the start of days getting shorter, my fear of my increased workload when the nanny leaves, the heat, or that it will be my youngest, my *last* child who starts kindergarten -- and his childhood wasn't at all how I'd envisioned it. I'm having a hard time caring enough about any of the things I have to do to allow me to do them. Even practicing music.

I've noticed I need more stimulant to keep me going, so maybe some of it is a stronger withdrawal when it wears off. These past few weeks I've really been aware that I am playing this delicate game of taking enough to allow me to function -- hopefully contually -- but not so much as to cause extreme muscle tension. I get the feeling I can't actually win at this game. I asked my pdoc for a prescription to try Provigil again, and he gave it to me. But I haven't remembered to get it filled. It has been 4 weeks. I'm worried about my short-term memory.

Just gotta keep doing one day at a time.

Rambings and Rhetorical Questions

2010-08-09T20:33:00.000-05:00

It is too hot to run errands. My metabolism slows down when it is hot, so fewer trips to the grocery store should be possible. Unfortunately, my husband continues to vigorously pursue his black belt and eats something like 3500 calories a day. So I have to go to the local grocery store. And the warehouse store. And the specialty gluten-free store. Yesterday. And the library, bank and post office. It is too hot. Texas should have siestas.

My birthday cake gave me migraines. No, actually, the frosting gave me migraines. Does that mean I get another calorie-free cake?

My kids gave me Wii Fit + for my birthday. Skateboarding is hard. I think I could become addicted. But after intense concentration and work and I am huffing and puffing it tells me I used 15 calories and am an amateur. I guess I need to ask my eldest for advice on how to turn and how to go in a straight line.

If Mr L and I played most of a game of Monopoly and it took us two tries over 6 days and finally the board got put away, did I win because it was my turn?

Mr L does not have the body-knowledge of how to do a flutter kick. I've tried to teach him, so many ways, so many times. As I walked in from swimming tonight, I thought about how I've said it is more like walking then like crawling, and I wondered, "How does he walk?" I answered myself: "Oh, that's right! He doesn't walk well at all. I've been complaining about that since he was 2."

Should Ms A's Biodad be allowed to see her against her will?

2010-08-04T21:51:00.000-05:00

My ex, Ms A's biodad, called her foster mom today. I'd love to find out what the pros out in blog land think we should do.

Foster mom's email to me:

He just called. Normally I dont answer if I dont recognize the number but I am expecting a call from a repair man.

He asked for our address so he could send a birthday card. I suggested he could send it to your house and we would get it there. He didnt like that. He asked to talk to Ms A, and I told him she was at summer camp for the week. He asked if he could see her and I said I would have to talk to you about coordinating that. I was so caught off guard, I didnt know what to say. Ms A doesnt want to see him. I have asked her. I was afraid to give our address for fear that he would just show up here and upset Ms A. He ended up hanging up on me, he was angry. I was as nice as I could be, but it didnt matter. I hope he wouldnt do anything stupid.

My response to her:

It is pretty much impossible to not make biodad angry (other than doing exactly what he wants and telling him he is a god). He is an extreme alcoholic.

I think that Ms A's fear of her father is based on one or two occasions. Just like with [overnight camp], the negative experience far outweighs the positives.

He was seeing her regularly (every other weekend) until he went to jail (~Jan 2008?). In the months leading up to that, he had started to show his anger to Ms A - something he had never done before. Ms A had started to be reluctant to go out to her dad's house. And she certainly saw how upset I was when I realized that the knife fight he had been in could have just as easily happened when she was there.

Until that time, though, biodad was Ms A's biggest supporter. He bought her the tiara [she wore at her birthday party this past week] (and, come to think of it, she has to have softened toward him a little or she wouldn't have worn it). He adored her, even if he could never believe how disabled she is.

After he got out of jail, I broke our child support contract by not letting him see her for unsupervised visits. I insisted that they be supervised, and he was unable (or unwilling) to arrange with a court-approved supervisory agency. He finally proposed that a friend of his, Ron, be the supervisor, and I did speak with Ron after I met him (at the Attorney-general's office, for a child support mediation). It still seemed rather tricky, as I realized that he would need to be brought there by the 3rd party, and I would need to have a 3rd party bring Ms A as I am unwilling / unable to meet with biodad. (Even thinking about him unbalances me. He gives me PTSD.) At the time, none of Ms A's caregivers had the maturity I thought would be necessary for such a meeting.

Biodad continues to bring up this lack of visitation at child support hearings, etc., and he is continually told that he needs to get a lawyer as the payment part of child support is not tied to the visitation part. I believe he has been told how to obtain a lawyer.

I do still think it would be good to try to have her meet him at a public place, as it cannot be good for her to feel so negatively toward a parent. Since he cannot drive, he would by necessity be accompanied by someone, probably Ron. Ron seems to have a pretty cool head, and he admitted to me that he really does not like how biodad has not been responsible toward Ms A. (Ron, however, also enables biodad's drinking.) I've thought a park would be a good neutral spot. Food would not be (as there may be the feeling that the interaction must continue until all the food has been eaten.)

I'd like to think that biodad's seeing Ms A again would help him realize that she is an ongoing responsibility and that she will not grow out of her disabilities, but I know that is not true.

Biodad has also suggested that [big brother] M could be the "neutral 3rd party". I think it would be good for Ms A to see M! But M has no driver's license either, and M can't remove his dad from the situation without it degrading into anger. That would need to be a different visit / occasion.

Ms A's old therapist always thought and told me I was wrong to not work to get Ms A and biodad together, although she did speak to him a few times and did realize that he is particularly difficult to get along with. She always felt I should try harder to separate my feelings from her needs. I'm sure she was right, but even thinking about being in the same area as he is has me shaking.

In the end, I know it is up to you two. Think about it, talk about it with others. Maybe I'll post this on my blog and see what other adoptive / foster parents have to say on the matter. (That sounds like a very good idea).

So here is the post.

I'm looking old

2010-08-04T16:42:00.000-05:00

Last week I went to pick up Mr P from daycare. He didn't notice me, and a little classmate of his said "Mr P! Your grandmother is here!"

Nobody has ever said out loud that I look more like Mr P's grandmother than his mother. And it isn't like a 4-year-old girl is going to know that a comment like that would sting. But it did.

Today I was in a waiting room with Mr P. While we were waiting, I had him do some jumping jacks (vestibular exercise!) After he was called in to the doc, a woman in the waiting room wanted to know how old I had been when I had him (42), and commented that he looked like he'd turned out fine (the assumption being that having been born to such an old mother, he was at higher risk for problems.)

I don't want to think that I look old. Partly I do because I am wearing my hair all the way up. It is too hot to wear down. And I have bride-of-Frankenstein gray on each side of my head. (Stress-induced, I'm sure.) I could color it, but I don't like trying to find the time for two-hour appointments in my schedule. Usually people are surprised to find out that I am as old as I am because they think I look so much younger (all that dancing?). I prefer it that way.

Happenings on August 3rd

2010-08-03T23:14:00.000-05:00

Mr P had gluten at school (kindergarten camp) yesterday. The nanny said she has never seen him behave so badly (they were shopping for my birthday present). AND he p'd on the shelf at T-get. I learned
1) Even seasoned teachers don't always understand what "do not feed" means.
2) Even though the school district has a policy of no birthday cake / parties for students, that policy is not in place for summer camp.
3) Mr P really needs to remain gluten-free.

We have Mr P's Neurogistics test results back. I talk to the consultant tomorrow. His dopamine is way high (462, standard range is 125-175) and his GABA and serotonin are high. That sure explains why Ritalin did *not* help the few times I tried giving him some. His histamine is also very high, so we'll be doing food allergy testing next. (Note: I do NOT want to eliminate more major foods from his diet! It will be hard enough finding a cook who can handle our food restrictions as they are!)

Mr P is in the middle of a psych evaluation, and I am trying to fill out the "Structured Developmental History, Behavior Assessment System for Children, Second Edition." Now, I'm sure many of you can guess that I tend to document a lot. And I recorded everything I thought was significant when Mr L and Mr P were babies. But I did NOT record when he understood his first words, or when he could walk up or down stairs (we have a single-story house). And all these questionnaires ask about bedwetting. The kid is dry at night. It is the daytime we have problems with. Hello? After reading so many blogs, I *know* my kid is not unique in this behavior. I get one line to describe any eating problems he has had, as with sleeping problems. I don't want to fill out this form. Can't the evaluator read the 40 pages I have written up and have that be enough? Sigh. But we are paying big money for this eval, so I need to do it.

In other news, Ms A turned 19 and I turned 39 . The family's birthdays are over with 'til next May. Ms A is at overnight camp this week! She did not want to go, but apparently her foster parents convinced her to get out of bed and get in the car. I spend the day Friday driving to pick her up (and driving back home). And I caught Mr L with a book in his hands today. It was open!

The start of school looms ever closer

2010-08-01T22:34:00.000-05:00

We just finished day 26 of NR. Our Saturday night babysitter, who was not here last week, voluntered that things went much better than usual "no tantrums!" before we even asked her if she noticed anything different. When the maid was here, Mr P started to do his usual "cover ears and run" when she turned on the vacuum cleaner, but then he stopped, carefully uncovered his ears, covered them again, uncovered, and then said "Hey! That doesn't hurt as much as it used to!" I caught him thinking about going down his pants today -- but that had me realize that I haven't been noticing much (any?) hands-down-the-pants recently.

Mr P goes to a "kindergarten camp" this week. I asked him did he want to wear pull-ups or underwear? "Underwear!"

I tried to scale-back to one Lego man every day-and-a-half, but that didn't go over well, partly because I couldn't explain the sticker system I'd chosen. Speaking of Lego, I've spent the past few days either thinking about the pieces or handling them. We are re-assembling some of the bigger models and attempting to organize them for a move from Mr L's room to the shared toy room. Mr L will keep his models and custom creations in his room on a display shelf. (We will still have to keep his room locked). We also have to try to separate the people-pieces, as Mr L really cares about the exact face-look or shirt paint or hand color. Mr P is just fascinated with people parts and endlessly re-arranges them. One very nice side-effect of doing bellly crawling is that we find tiny Lego hands more easily now.

The other task I did today was to find all the 3-dimensional creations from Mr L's first 4 years of school and photograph them. Next I have to print the photos. But then (heh heh) I get to start having the not-quite-so-nice ones slowly disappear. (Just as long as Mr L doesn't see the photos and want to find the originals ... )

The start of school is around the corner, and I'm trying to be prepared. This year, THIS YEAR! I am going to have dealt with all of last year's stuff BEFORE the first day of school! (Right, dream on. But I am far closer to this goal than usual.)

And I haven't mentioned yet that I am "letting the nanny go" at the start of the school year. That means a whole lot more cooking, laundry, picking up toys, shopping, etc. for me. I keep trying to think of how much money we won't be spending every month.

I've been invited to join

2010-07-28T23:07:00.000-05:00

Remember a while back I was on trial with a band? Bet you thought I had forgotten to tell you what happened. No. It took this long for the leader to tell me. (Not as odd as it sounds. They had a performance in June I could not make it to, so I would have been pointless at the rehearsals, and they didn't meet the first 3 weeks of July. Also she did forgot to tell me. She apologized.) I'm in!

I'm happy and excited, and I don't know where I'll get the time before school starts. I need to find the time because we have a 2-hour gig on Aug 20th with the main theme being Cajun. I've never played anything Cajun, and, really, penny whistles and clarinets just are not used in Cajun music. I've got a whole slew of new tunes to learn, but we are also performing many of the ones I already know. I'm not as worried this time around. We're performing at a store, so probably the only people who will know me are my band-mates. I suspect that sometimes the audience will be smaller than we are (there are 7 of us). I think my biggest worry should be leaving the store without buying lots of junk, as it is big and fun to shop in and a significant drive.

More progress; day 20

2010-07-26T16:29:00.000-05:00

More progress we have noted:

Mr P is putting together small Lego models. 1st time I gave him the pieces for step 1, then for step 2, etc. I had to coach him on orienting the pieces to match the picture only about 3 times. Before, he 1) would have demanded all the pieces at once, 2) refused my help, 3) cried a lot.

He just came to me for help in reconstructing a Lego thingy. Let me say that again, he CAME to me for HELP. No crying, tantrums, yelling from the other room. And then he LISTENED to what I said and I know he will know how to do it correctly next time. WOW. (Actually, he would come to us for help before. He would rip the arms off of whatever toy and then bring the armless thing, plus disembodied arms, to us to put back together. That sounds more gruesome than it was. But it was annoying.)

He does forward rolls now. He does them so well we use them as a vestibular activity. He stands on his head to watch TV. Despite his very high activity level, he had never done that before.

Daddy and I had to feed him every bite, but he ate about 3 oz of salmon last night. I think without our help he would have not eaten it at all. I can't wait 'til he grows some! (I have hand-me-downs just waiting for him, so, no, I shouldn't have to go running out to the stores to buy him clothes that fit.)

This bribe thing is going to get very expensive. But my just-turned-5-years-old, highly impulsive little person is bugging me to get off the sofa in the morning to start his program, and he works (off and on) all day to get his reward about an hour before bedtime. Tell me that this learning about delayed gratification isn't worth it. Go ahead. I dare you -- tell me. (It is impossible to get a Lego man for less than $2. It is easy to spend over $10 on one figure! I'm hoping his desire for Lego men will wane and I can switch him to something cheaper, or his ability to accept delayed gratification will increase to the point that he can spend a few days earning one thing.)

I do have problems with Mr L being home again. He distracts me so that I have even less time (with noise, at times he is not trying to get or hold my attention), he distracts Mr P so work doesn't get done, he resents having to turn off the Wii so Mr P can get his work done. And yes, I do have to factor in "time to be with Mr L" I have to work on that one. And the arguments! Mr P has not stopped coveting his brother's Lego, and if the door to Mr L's room is not locked, Mr P is in there.

There were a lot of things I liked about last week. The lack of sibling rivalry was a big one, but I did not realize it at the time.

Struggling to Stand

2010-07-24T19:14:00.000-05:00

I have not been able to wake up today. I'm learning, on days like today, to ask myself what I had for a snack before I went to bed. Last night I did not have my usual 2-3 slices of cheese with (gluten free) pretzels. Instead, I had a few (gluten free) chocolate wafer cookies and a piece of toast with butter. Not good. No protein. At least days like today are feeling less random, and that helps to keep me from feeling like my health / life is out of my control.

I know to be glad that I got a lot done yesterday (mostly at the computer, so I wasn't simply fatigued). I know to be glad that I have been doing well with Mr P's NR program, so that if I couldn't complete it today, it would be OK.

My body gets so tired that my bones hurt, and I need to cry.

I spent much of the morning having a hard time being vertical.

Finally I thought that maybe I could force myself to be awake by exercising. I loaded up Wii Cheer (and started a new game as Mr P had erased my champion). I won 4 cheers in a row. I got very sweaty, but after turning it off I still could create no motivation in myself, or in Mr P, who had a great deal of his NR work to do.

Wonderfully, it was Mr P himself who finally created the motivation. Against most rules of parenting, I have been motivating him this past week with a promise of a Lego man at the end of the day if he has done all his work. He wants his man. He did a lot of work this afternoon, and I am certain that by bedtime he will have another clone to add to his army. (I wonder how much space 365 Lego men will take? And can I find them outside of models -- at less than $5 each?)

I have stood up today long enough to do his program and to get dinner into the oven.

Sometimes when I see my screen name on other people's blogs, I think "That name, Struggling To Stand, is a bit melodramatic, isn't it?" Then I get a day like today and I remember why I gave that name to myself. My struggles are physical as well as emotional. But I made it through the week. I did great. My husband and son are home now (they got here in the late afternoon). And tonight I will have protein before I go to bed.

NR - Day 16

2010-07-22T23:52:00.000-05:00

I wonder how much of Mr P's changed behaviors are because I am spending so much time with him (since his 24/7 playmates of dad and brother are not here) and how much are due to NR. I hope much of it is NR, as I cannot keep up this do-nothing-but-be-with-Mr P-all-day for much longer. But it has been fun, and rewarding.

When we got home after an appointment, Mr P took off his shoes and left them in the middle of the kitchen. He sat down to play. I noticed them and said "I understand that you want to take off your shoes, but look at where they are; people will trip on them. Can you please move them?" And he got up and moved them!

He was being a prickly-pear for his nanny and went to hide behind a curtain. After a little bit he said he needed something to suck on, could he have a lollipop? To me, this is big. He was noticing his need to suck his thumb and looking for alternatives! We settled on bubble gum (one of the few types of gum with no aspartame); he chewed it for quite a while then it went into the trash can. I guess I need to buy more gum!

He wanted to play Wii before bed. I said "OK, but we need to do your last pattern first." He did the pattern, although he complained near the end that it was tiring. (It is! I did 20 of them yesterday and he is supposed to do 60! We stopped at 48). Then I couldn't get the timer to work but I told him he got 1/2 hour. Just as I was thinking I had to stop what I was doing to get him off, he came to me! (There isn't a clock nearby and he can't tell time anyway -- that must have been a coincidence?)

He went into his nanny's closet (stash of toys) and he took out a toy to play with. One toy. No messy closet and stuff strewn all over the playroom floor. The toy didn't get put away later, but shoot! This is such progress!

I've just got to figure out how to keep the house running while I spend so much time coaching him through all his work.

So hard to shake bad dreams

2010-07-22T11:43:00.000-05:00

It has been a gray morning.

I went to sleep at 9 pm yesterday and woke at 4 am to a dream of claustrophobia. After another two hours of a fitful dream / wake state, I realized I might be having very low blood sugar and I got up and ate, then slept again. My dreams were only marginally better. In one dream, my conscious mind realized that I can never move away from Texas as long as Ms A is alive.

The week has been hard, I've had to be up and available for Mr P all the time. I've been shirking my duties this morning, instead fighting our FSA company in an attempt to get them to reimburse me for the very expensive TAAT supplements from neurogistics.

I feel bad for telling my friend, GB's mom, what I think. I worry I've put her into a blue mood.

And I feel terrible for Lisa, who is facing a total nightmare. Is? She has been standing tall and capable battling a full-out hurricane for months now, and after coming to the gut-wrenching conclusion that she absolutely must have help, and no rational person can deny her need, she is faced with a system built on heartless irrationality. What she is experiencing isn't in the realm of "unfair", but is deeply, deeply wrong.

I've eaten well this morning, taken my suppliments, but clearly I need something more to pull me up.

The Swimming Maniac - Explained

2010-07-20T21:55:00.000-05:00

Another good day of getting all of Mr P's NR program completed meant we could go swimming tonight. Same dare-devil, driven behavior as before. I measured him before we went and I showed him that if he stood in 3' the water would come to just under his eyes, so if he held his breath he could stand up and see over the water. I was right. He also discovered he could stand on tip-toes and breathe. And he discovered bobbing.

But he kept sneezing. It is gross, as he sneezes 'til clear snot comes out (and I try to wipe it off on the side of the pool). One really cool recent side-effect of NR is that he is now much more willing to try to answer questions, so I asked "Why do you sneeze so much?" and he said
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"To get the water out of my nose."
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And it hits me
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"You mean it doesn't hurt when water goes up your nose?"
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"No."

So I guess that is the secret to having a kid so willing to try to swim.

I did teach him about blowing out through his nose when he submerges so maybe he won't get so much water up it now ...

Sometimes God *does* give you more than you can handle