Brief Update
16 hours ago
Thursday, April 26, 2012
Incompetent Staff; Don'tcha love em?
April 27, 2012
Dr. J. B., DDS
Dental Practice
My City
PERSONAL AND CONFIDENTIAL
(cc’d to Employee Benefits and Dental Insurance Company)
Dr B:
My daughter, Ms A, (I am her birth mother and guardian), was in your office on the afternoon of Wednesday April 26 to have her wisdom teeth extracted. Because I have learned that the professionals are not always aware of the improper behavior of the staff, I am writing with some major complaints about your office staff (two of them, a male and a female).
Over a month ago I had confirmation from Medicaid that they would pay for Ms A’s procedure. Tuesday, the day before the procedure, I received a panicked email from Anna’s foster mother, saying that your office had contacted her and told her Medicaid would not pay and I needed to call Medicaid. I dropped all other plans for the afternoon because phone calls of this sort can take a great deal of time and I knew my daughter was in pain and needed to get this extraction done as soon as possible. After a first fruitless ½ hour of phone calls, my husband had to cancel a work meeting so he could pick up our children from school so that I could continue making and receiving calls. I spent over 1 ½ hours on the phone with Medicaid, Dental Insurance and your office staff. There had been two issues to be addressed. First, whether or not Medicaid would cover the costs if there was also a private plan and secondly, verifying our coverage with Dental Insurance. When it was “over” around 3:00, I thought all was fine as by 5:30 neither Foster Mom nor I had heard anything else from your staff.
Imagine Foster Mom’s surprise when she and my daughter arrived at your office around 12:30 Wednesday to find out that your staff had not yet verified Dental benefits because your (male) staff member insisted they must have my husband’s social security number in order to verify coverage under Dental Insurance. Tuesday your female staff member insisted she had verified benefits on many employees where my husband works and they always used the social security number. Since his place of business stopped using the social security number as the ID number a number of years ago, and because common advice is to not give your social security number to anyone you don’t need to (as that increases the risk of identity theft), I refused to give her a private number she had no need to know. I confirmed with Dental Insurance TWICE Tuesday that the member’s social security number is not necessary. Since the letter-number combination on my card (which I offered to fax to your office but she said “no”) is indeed quite difficult to enter into Dental Insurance’s system, I called Dental Insurance and asked for (and received) an alternate digit-only ID number. I tried it myself on Dental Insurance’s phone system to verify that it worked and then I called your office with it. Your (female) staff member objected AGAIN, although I thought she had finally given in and I gave her the alternate ID number.
My Complaints:
FIRST, your office staff did not follow through to confirm benefits Tuesday in the time between 3 and 5, nor Wednesday morning before noon. Or, if they did, they did not feel it worth a phone call to Foster Mom or me to inform us. Instead they waited until Ms A was on-site. (What if neither I nor my husband were available at the last second? Would they really have followed through on their pig-headedness and sent Ms A home, forcing another re-schedule for a child in pain?) And what difference did it REALLY make whether Dental Insurance approved if Medicaid had agreed to pay?
SECOND, your staff extracted my husband’s social security number from him under false pretenses and in a circumstance manufactured to give him no choice. He knew Ms A was in pain and that Ms A and her foster mother were already onsite. He knew how much time I’d already spent and how hard it had been for me to try to convince your staff of the truth. I checked his credit report a few weeks ago. You can guarantee that if something fishy shows up in his credit report over the next few months, I will tell the police to look at your staff as primary suspects. I have not released his social security number to any doctor or other non-financial professional in years and I carefully shred all documents that list the number. IT IS NOT NEEDED.
THIRD, your staff doesn’t know that BCBS is a medical insurance program so they thought Ms A had three dental insurance programs and therefore Medicaid wouldn’t cover the co-pays and deductibles. This was the source of the first HOUR of calls I had to make Tuesday. If your staff was so used to getting people from my husband’s place of employment then she should be used to all of us having separate medical and dental plans. That was an hour of my time COMPLETELY WASTED inside frustrating voice and menu systems. (Although each of the 3 individuals I eventually reached were all quite nice I had to repeat all identity-verifying information to each of them as well as for the call menu systems. Note that no government or insurance agency I contacted ever asked for a social security number.)
FOURTH, although you are an approved provider under Dental Insurance, Foster Mom was informed that if Medicaid wouldn’t pay, then the procedure wouldn’t be performed. This should have been my decision as I am the person who is responsible for meeting the costs after Dental Insurance pays.
FIFTH, our time is worth money too. Handling your staff-generated “crises” meant delaying two time-critical tasks until Wednesday and my husband missed an important staff meeting at which he was to have given a report. Ms A and her foster parents were kept in limbo -- certainly increasing the anxiety factor for all of them -- way beyond anything actually necessary.
Today, Thursday, I received a call from Maria. It appears they forgot to get our mailing address. To say your staff is incompetent is, I believe, putting it mildly.
Thank you for your services to Ms A. I have heard nothing but good things about you from Ms A’s foster parents. Thank you also for listening to my complaints. No parent should be forced by your staff to do what I had to do.
[signed]
p.s. I was also not happy when I called Monday to talk about anesthesia in regards to Ms A’s medications and shunts. I was told there was no way to talk about anesthesia with (you? an anesthesiologist?) until the morning of the procedure and email was also not possible. Your staff also told me we would probably need a medical release from her other doctor(s), but getting such a statement from various surgeons between 8 – 12 on the same day would likely have been impossible – again risking that my daughter would show up only to be turned away.
Sunday, April 15, 2012
Dept of Disability not compliant with ADA on mandated system for the disabled!
Yes, you read that title right, and that is why I am posting. I am too angry not to!
The Back Story:
The Texas Department of Aging and Disability Services (DADS) has contracted with Sandata to implement an Employee Verification System (EVV). It is extraordinarily likely that the contractor who would be picked (Sandata) was pre-determined before the Request For Proposal went out, almost certainly through Dianne and Thomas Delisi, lobbyists for Sandata (see http://www.ethics.state.tx.us/tedd/conlob2010c.htm). Dianne's daughte-in-law / Tom's wife, Deirdre, is in Governor Perry's inner circle (see http://www.texastribune.org/library/data/perrys-circle/). The contract was awarded Dec 8, 2010, less than 40 days after the request-for-proposal went out.
It was decided that an EVV was needed as a response to the TX Gov's mandate that DADS cut its budget by 10%. Who decided an EVV was needed? DADS Commissioner, Chris Traylor (http://www.dads.state.tx.us/news_info/executives/traylor.html), tells us he was the one who pushed this, but I suspect he's covering something / someone. Commissioner Traylor says that without paying [mega-bucks] for a contract to hunt out fraud [by some of the poorest workers in TX who work out of LOVE and who get no more than $11 / hour] -- without this [witch-hunt,] he would have had to cut an entire program. Well, no, he did NOT use those exact words. I filled in all the stuff inside the brackets. And this isn't a direct quote anyway.
What is EVV?
In short, it requires every caregiver who works for clients inside a select group of TX Gov't funded programs to clock in and out of every shift by making a toll-free call from a landline telephone. Government funded programs that have higher pay-rates were not included, although it seems logical that there would be more fraud when there was more money involved. It is demeaning, treats the caregivers and employers like myself as potential criminals, hurts the caregiver-client relationship and is insulting to all the people who've worked under the existing regulations to ensure that the clients who receive the care need it, continue to need it, can justify the number of hours needed, etc. It requires more work from the agencies who screen and send out caregivers and it requires more work from people like me who hire their own caregivers. Of course DADS gives you a different impression if you go to their website. (http://www.dads.state.tx.us/evv/WhitePaper.pdf and http://www.dads.state.tx.us/evv/faqs.html.)
I'll take a moment to talk about this landline crap. Fewer and fewer homes HAVE land lines. My daughter's caregivers do not have one. Why would they need it? If there is no land line for an employee to call from, then a device called a Fixed Verificiation Device (FVV) which has the ability to know if it has been moved from the home, must be used to generate a number that the employee must write down and later call in, using a land line. I strongly believe the land line bit is so that there can be good money made by the long-distance provider who has the contract for the toll-free calls that will be made. I can't see any other real reason.
Although the phone (and device) that must be used must be in the client's home, some of the programs that MUST use this system were formed with the goal of helping the clients get out into the community. Many clients are not at home when a caregiver's shift starts (my daughter is often at school), some almost never have a caregiver start or end at the client's home. So the system has a way for the employer (people like me) to enter "exceptions" via computer. So the EVV system doesn't eliminate the need for pieces of paper to keep track of what would have gone on a single time sheet, it just makes errors more likely to occur. I must attend a training that will last at least an hour, but I am not reimbursed for my time (but you can bet the Sandata people are being paid for giving the training.)
I get a headache just thinking about it.
But get this
They are not ADA compliant!
Although the contract that DADS signed with Sandata specifies that Sandata must comply with all federal and state laws, the computer program requires that a vision-impaired person have their own text-to-speech program and the phone system is voice only (can't have any deaf employees, can we?). More than a few parents have set their mentally disabled children up as the official employer (and the parent is the designated representative). This allows the child / client to sign the time sheets and can give such a client a great feeling of accomplishment and responsibility. Yet there is no way many / most of these mentally disabled employers can use the computer system! The designated representative can. More burden can be put on the caregiving agencies to create a timesheet for these types of employers to sign ... DADS says that it will work with each case of inaccessibility to solve their problem.
It has been in place in Midland, Odessa, San Angelo and surrounding areas since March 1, 2011. My understanding is that most users there have disliked it and there were many problems. Note that the larger Midland–Odessa, Texas Combined Statistical Area, had an estimated population of 274,002 as of July 1, 2010. It seems that this trial run produced a 4% savings -- surely there was some fraud prevented, but it is quite hard to believe all that 4% was from fraud. And was that 4% the payroll that was saved vs what? How does that compare with the cost of the Sandata contract? (The exact amount of which is apparently not for public knowledge.)
On February 1, 2012 Abilene (pop 117,063), Wichita Falls (pop 104,553) and the surrounding areas, and Longview (pop 80,455), Tyler (pop 96,900) and the surrounding areas became the next guinea pigs.
EVV "goes live" in DALLAS, FT WORTH, AUSTIN, WACO and surrounding areas, MANDATORY, in mid-July. I won't insult your intelligence by looking up the population of the greater Dallas and Austin areas.
Why the rush? Why does it have to be pushed into action so fast when it is still being tested, kinks being worked out? Because Sandata makes 12 cents per phone call, that's why.
Is there a word for government-by-lobby combined with cronyism? "Business-as-usual"? "Screw the poor"? Caregivers do not have lobbyists.
Get mad. Get VERY mad. I have even more reasons to be angry than I can possibly say here ...
The Back Story:
The Texas Department of Aging and Disability Services (DADS) has contracted with Sandata to implement an Employee Verification System (EVV). It is extraordinarily likely that the contractor who would be picked (Sandata) was pre-determined before the Request For Proposal went out, almost certainly through Dianne and Thomas Delisi, lobbyists for Sandata (see http://www.ethics.state.tx.us/tedd/conlob2010c.htm). Dianne's daughte-in-law / Tom's wife, Deirdre, is in Governor Perry's inner circle (see http://www.texastribune.org/library/data/perrys-circle/). The contract was awarded Dec 8, 2010, less than 40 days after the request-for-proposal went out.
It was decided that an EVV was needed as a response to the TX Gov's mandate that DADS cut its budget by 10%. Who decided an EVV was needed? DADS Commissioner, Chris Traylor (http://www.dads.state.tx.us/news_info/executives/traylor.html), tells us he was the one who pushed this, but I suspect he's covering something / someone. Commissioner Traylor says that without paying [mega-bucks] for a contract to hunt out fraud [by some of the poorest workers in TX who work out of LOVE and who get no more than $11 / hour] -- without this [witch-hunt,] he would have had to cut an entire program. Well, no, he did NOT use those exact words. I filled in all the stuff inside the brackets. And this isn't a direct quote anyway.
What is EVV?
In short, it requires every caregiver who works for clients inside a select group of TX Gov't funded programs to clock in and out of every shift by making a toll-free call from a landline telephone. Government funded programs that have higher pay-rates were not included, although it seems logical that there would be more fraud when there was more money involved. It is demeaning, treats the caregivers and employers like myself as potential criminals, hurts the caregiver-client relationship and is insulting to all the people who've worked under the existing regulations to ensure that the clients who receive the care need it, continue to need it, can justify the number of hours needed, etc. It requires more work from the agencies who screen and send out caregivers and it requires more work from people like me who hire their own caregivers. Of course DADS gives you a different impression if you go to their website. (http://www.dads.state.tx.us/evv/WhitePaper.pdf and http://www.dads.state.tx.us/evv/faqs.html.)
I'll take a moment to talk about this landline crap. Fewer and fewer homes HAVE land lines. My daughter's caregivers do not have one. Why would they need it? If there is no land line for an employee to call from, then a device called a Fixed Verificiation Device (FVV) which has the ability to know if it has been moved from the home, must be used to generate a number that the employee must write down and later call in, using a land line. I strongly believe the land line bit is so that there can be good money made by the long-distance provider who has the contract for the toll-free calls that will be made. I can't see any other real reason.
Although the phone (and device) that must be used must be in the client's home, some of the programs that MUST use this system were formed with the goal of helping the clients get out into the community. Many clients are not at home when a caregiver's shift starts (my daughter is often at school), some almost never have a caregiver start or end at the client's home. So the system has a way for the employer (people like me) to enter "exceptions" via computer. So the EVV system doesn't eliminate the need for pieces of paper to keep track of what would have gone on a single time sheet, it just makes errors more likely to occur. I must attend a training that will last at least an hour, but I am not reimbursed for my time (but you can bet the Sandata people are being paid for giving the training.)
I get a headache just thinking about it.
But get this
They are not ADA compliant!
Although the contract that DADS signed with Sandata specifies that Sandata must comply with all federal and state laws, the computer program requires that a vision-impaired person have their own text-to-speech program and the phone system is voice only (can't have any deaf employees, can we?). More than a few parents have set their mentally disabled children up as the official employer (and the parent is the designated representative). This allows the child / client to sign the time sheets and can give such a client a great feeling of accomplishment and responsibility. Yet there is no way many / most of these mentally disabled employers can use the computer system! The designated representative can. More burden can be put on the caregiving agencies to create a timesheet for these types of employers to sign ... DADS says that it will work with each case of inaccessibility to solve their problem.
It has been in place in Midland, Odessa, San Angelo and surrounding areas since March 1, 2011. My understanding is that most users there have disliked it and there were many problems. Note that the larger Midland–Odessa, Texas Combined Statistical Area, had an estimated population of 274,002 as of July 1, 2010. It seems that this trial run produced a 4% savings -- surely there was some fraud prevented, but it is quite hard to believe all that 4% was from fraud. And was that 4% the payroll that was saved vs what? How does that compare with the cost of the Sandata contract? (The exact amount of which is apparently not for public knowledge.)
On February 1, 2012 Abilene (pop 117,063), Wichita Falls (pop 104,553) and the surrounding areas, and Longview (pop 80,455), Tyler (pop 96,900) and the surrounding areas became the next guinea pigs.
EVV "goes live" in DALLAS, FT WORTH, AUSTIN, WACO and surrounding areas, MANDATORY, in mid-July. I won't insult your intelligence by looking up the population of the greater Dallas and Austin areas.
Why the rush? Why does it have to be pushed into action so fast when it is still being tested, kinks being worked out? Because Sandata makes 12 cents per phone call, that's why.
Is there a word for government-by-lobby combined with cronyism? "Business-as-usual"? "Screw the poor"? Caregivers do not have lobbyists.
Get mad. Get VERY mad. I have even more reasons to be angry than I can possibly say here ...
Tuesday, January 31, 2012
Yes, I'm still here
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.
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.
Wednesday, December 7, 2011
Do you suppose I could actually put coal into a stocking?
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.
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.
Thursday, November 10, 2011
Is this what normal parents do?
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.)
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.)
Sunday, November 6, 2011
How much longer?!?!
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.
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.
Sunday, October 30, 2011
Is dancing a variation of seizure activity?
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!
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!
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