Question for parents of older HFA or Asperger's kids

[emeraldmom]

My DS12 has Asperger's Syndrome, he is also intellectually gifted. It's a strange world I love in. He was on concerta for about 6 years. We took him off of it at the end of the school year because he isn't gaining weight. He hasn't been for a long time, and his doctor and I knew this was coming. So we took him off. He gained about 7 or 8 pounds in the first month! WOOHOO! He was very underweight, but it looks like we're well on the way to catching up. The problem is that the concerta WORKED really well for him. He's now on celexa, he has klonopin (used rarely), and we've added tenex. We've upped the tenex dose twice, and I don't think we can up it any more. He also has ADHD, anxiety, and OCD issues.

I am seeing behaviors that I haven't seen for a LONG time. He internalizes really well, so usually I can tell when he's overstimulated, but it's not always obvious to others. Not anymore. He's starting to stim ALOT more. Last night we were at a restaurant. He starts rocking back and forth, and periodically saying BOOM, fairly loudly. I asked if he was aware he was doing this, he wasn't. I finally handed him a peanut, I told him to fiddle with it, but he could not crack it. That kept him busy for a little while. To add to the problem, I am a single Mom, I have two boys, 12 and 9. DS9 is probably also on the spectrum, but it's mild, so I haven't had anything diagnosed with him. We live with my parents, who don't always "get" it. So, that adds another element to it.

Are there any non-stimulant meds that anybody else has found work well? His doctor said we could try focalin, but it's a stimulant, and the weight is really an issue.

My other question is, what things can I do that are age appropriate, but will keep him busy, so he doesn't stim as much. We are leaving for Disney World in about two and a half weeks. I'm also looking for things that he could do at school. This hasn't really been a big issue since he was much younger, so I'm racking my brain. He does have worry stones to keep in his pocket that he can play with. He has a bracelet that he can twist and play with. Last year his teachers were okay with hard candy, I'll see if this year's teachers will be. He goes to a gifted magnet school, so I get lille to no accomodations for him. There have been numerous meetings. He pulls A's and B's, so they don't understand what the issue is. Even though I tell them it's an issue when he comes home in tears most days. He internalizes it all, so they don't see it. With the med change, this year they may see a whole lot of it. Anyway, I'd appreciate any ideas. It's so hard because we straddle two worlds, the autistic world, and the gifted world. I guess I'm trying to find ways for him to be able to fit in, and for his quirks to be less obvious we he goes back to school. He loves his school, it's the first time he's ever had friends. He was bullied all through elementary school. He'll be going in to 7th grade next year, and it would break his heart if his friends noticed his quirks.

 

[bookwormde]

If he is OCD and high anxiety is means that he is not being supported properly by the clinical and educational communities. This is very common for our kids who end up on ADHD medicines since they often do not get the social skills programs that they need and they almost never get the curricular modifications and accommodation and skill training they need to make proper use of the gifts that come with a different EF system.
It is good that you are recognizing the problem now since many of our kids run into real catastrofic problems when they get into their teens or young adult and the medicine creates ODD complications or they just stop taking it altogether and they never had the support to learn the skills they needed when they were younger.
Our kids should almost never be on medications for extended periods of time since most are contraindicated due to the masking effect and coincident co morbid conditions (anxiety, OCD, ODD etc.).
You need to get him the support that he needs to function and flourish without the medicines. This is a lot of work but the long term benefits are amazing and the alternative is really scary.
Abilify if a possible one, and it has a side effect of weight gain, but as with all these medicines they have serious side effects so short durations are a must. Social skills programmatic support is a requirement of this drug for ASD kids so you can get it from the clinical side as well as his school's social skills program that he is in.
Bookwormde

 

[emeraldmom]

Thank you Bookwormde for your thoughts. Unfortunatly, he doesn't really get any help. This is the problem with being twice exceptional. Because he is so smart, hje doesn't really get much in the way of help or accomodations. It's a battle I have been fighting since he started school, and will continue fighting.

As much as we all want what is best for our children, I am not in a financial position to pay for the things that might benefit him. It took me 6 years, but I finally got them to do a formal speech eval last year. The conclusion, he has speech issues, but they aren't severe enough to warrant therapy from the school. We've tried a number of different therapists (psychologists, LCSW, etc) that were covered by insurance, but they didn't work out long term. Most of them have told me that he is already doing exceptionally well, and doesn't really need long term therapy. The last time we all decided together that pulling him out of school for a half day on a weekly basis would cause more problems than it solves.

He gets very little help from the school, and has always gotten very little. I have battled with them for years. I don't have the finances to do anything drastic like a lawyer. What it boils down to is that the school measures need by grades. Because his grades are excellent, he doesn't need anything. A different school isn't an option. If he wasn't in the magnet school, the school he would be in would be far worse.

It's a difficult situation. I do the best we can, as do we all for our kids. I am a registered nurse (unemployed), which helps as far as managing his meds and discussing that part of it with his doctors. He's sees a wonderful developmental pediatrician. Unfortunatly he's going to be leaving soon, so we'll have to wait and see what the new doc is like.

This med change has been hard. I don't want to over medicate, but he does NOT function well without meds, we've tried. The tenex helps. I am open to med suggestions. What I really need are ideas of things he can do to keep himself, his hands, his mouth, etc occupied that do no appear overly odd to other people. I'm going to try to get the teachers to let him do hard candies again. It helps keep his mouth busy so he doesn't vocalize in an inappropriate way (as much). When we are at WDW I have more options. There, he won't see these people again, so I don't have to worry as much about how it looks to others. As a middle schooler, he is sensitive to what others think. He has just started having friends this past year. I want to help him learn ways that he can deal that won't be looked at strangely by his peers.

 

[ratlenhum]

We do biomedical interventions. The one time we tried a prescription med it was Abilify. My son was on it for 12 weeks from starting at 1/2mg, working up to 2mg, then weaning off. My son gained SO much weight and it continued for about 2months after coming off the med. He was always lean and mean, and now a year later, he's still just under the "obese" mark on the weight chart. He gained 20 lbs in that time.

We use a supplement called ZEN by Allergy Research products. For my son, and others I know it works wonders.

Any kid I know that has been on meds, usually had worse behaviors or hyperactivity when either the drug stopped working or when they had to come off it for some reason.

There are so many other natural supplements that work for our kids without the serious harmful side effects from years of drugs.

 

[bookwormde]

The problem is that the School is violating IDEA and your child is paying the price. By allowing continuous medication, they are not being required to accommodate and meet the functional need of your child as required. Yes it is a fight that takes major work to get his need met (without or limited medication) but your description is the same as many of the parents I work with in my state give of their child at that age and in later teen or young adult they are in major crisis, and unfortunately by that time there is little I can offer in the way of help. He can function with limited or no meds, the school has just never created the environment to help him develop the skills to allow him to. I know I am direct but you are at the last chance point of getting his needs met.
You do not need a lawyer, but you do need to understand your child's rights under IDEA. One of those rights if the fact that the school must accommodate your child and meet his needs if you choose not to medicate. Medications do have short term benefits (especially for schools and if they have to meet your child's core needs and amount of effort they have to do to accomplish this) but the long term prognosis is not good since you end up with a person who while academically qualified , but lack the functional skills to survive independently, let alone flourish in our society and when medications no longer suffice or they stop taking them on their own (which is almost always occurs), it is very sad.
Again sorry for being so direct, but when you get as many calls from parents of "older kids" who are crying and desperate, and by that age there is little to offer, it is hard not to be
bookwormde

 

[emeraldmom]

You know, I was asking for ideas to things he can do help him be able to control his stimming a bit. It was simpler in some ways when he was younger, being older adds a new dimension with his peers. He can't just carry around a stuffed animal. I thought maybe somebody else has dealt with this, and has some wisdom. He doesn't like to feel out of control. It also bothers him when he starts to do things without realizing he is doing them. He likes to suck on hard candy because it (usually) keeps him from making inappropriate noises. He likes to fiddle with things in his hands because it gives him an outlet to move around, without his whole body moving around. These are small things we have found that help him.

I have chosen to use medications. It is was not a choice I undertook lightly. Medications are a tool, like any other. I don't expect them to magically solve things, but to be a tool. Yes, medications can have side effects. By the medications have side effects arguement, should I also take him off his asthma meds? They can have side effects too. For people who choose to use supplements, they can too, and are not tested as well, so I would be cautious. I am careful with what meds he is on. We re-evaluate them regularly. The doc he has now is great, hopefully his replacement will be also. We don't simply sedate him, I have gotten rid of more than one doctor for trying to do that. We try to get him to a place where he can be more in control of himself. Where he can be in control of the anxiety, and act normal enough that you can see the real him. It's all about balance. He and I work on coping strategies all the time. We don't expect the meds to just fix it all. We are constantly talking about new situations, how to deal with them, what is appropriate, etc.

His school situation is not perfect, I know that. I argue with them VERY regularly. I can't afford to go at them with lawyers or professional advocates. They tell me they measure FAPE by grades. As long as he is an honor roll student, they consider themselves to be providing a FAPE. I have to argue and beg for every tiny scrap of assitance we get. I've had veiled threats of them kicking him out of the magnet school and sending him back to the regular school. At least at the magnet school we are meeting the needs of the gifted side of him. At the regular we wouldn't be meeting the needs of either side. Half is better than none. He's also doing better socially with these kids. Every year I hope the new teachers will be more understanding, I'm usually disappointed, but I keep hoping. I work with him extensively at home. He's an awesome kid. The therapists we've been to have said they can't do anything more for him than I'm already doing. So, maybe I'm doing *something* right. For the most part, he does really well. He has some issues, but he probably always will. The stimming is something we haven't had an issue with in a while, so I was just looking for suggestions. I really wasn't expecting to be basically told he'll be messed up for life. I respectfully disagree. Nothing in this world is perfect, and we all just do the best we can, with the tools we have available to us.

 

[bookwormde]

Not judging, I have plenty to look back on and wonder what was I thinking, we all do the best with the resources and knowlege we have, just trying to arm you with knowlege.

Sorry for being gloomy, but I think it is important to know the potential. Many of our kids make it though without the catostrophic consequences so hopefully you child will be part of the successful group. I know I am more than a little jaded from being the last resort when things some apart for many parent is my state.

I can understand your frustration with a school system that thinks acedemic measures are the quialifying criteria for an IEP, this is why the Feds mandated a fuctional statement in all IEPs last year, to make it clear to the school that they had equal responsibity for functional issues like social skills and EF.

Lots of free support out there so try contacting your state's Parnet Information Center for leads.


bookwormde