Alp Life

The trials of raising a sweet boy with special needs.

Friday, May 26, 2006

It is hard to get a picture of Alp smiling, because he insists on saying "cheeeeeeese", so this is what you usually get. He's adorable anyway.

Since Alp is in a new school and is finally having some success, the ESE director recently recommended he stay there for next year, even though normally he would be going on to middle school. I think this is a great idea because I was worried about what a new location and new teacher might bring. Having him in a good place is such piece of mind.

For those of you that haven't already met or at least read about my stepson, Alp,...he is one month shy of twelve years old and has Autism and Tourette's Syndrome*. He lives with me, my husband and my eleven year old twin girls.

By far, the most disturbing of Alp's maladies are the self-injurious tics associated with Tourette's Syndrome. The latest tics are of concern because they are painful. He taps. Hard. Perhaps tap is too gentle of a term to describe what he does. He hits. He doesn't mean to hurt. The problem is, the hand flicks violently and lets the fingers ram into one's arm.

Worse than this is what he does to himself. For months he has been whacking the sides of his head, directly on the ears. This is also a very hard "pop". He has gotten sores on his ears and I worry about the internal stress he's put on them.

He has another tic that is difficult on his teeth and jaws. He lets his head hang back a bit, then leans forward quickly to let his head fall foward so he can hear his top teeth click onto the bottom ones. This one has been around for quite some time.

Another bad one is the right arm slam. He lifts the arm in "wing" position and smacks it into his side. He has long, thick calluses on his inner arm from it rubbing against his shirts.

How I wish we could find something to help him with tics. He is on so many meds, vitamins and supplements**, etc. He has had behavior therapy, which doesn't help because tics are not voluntary. We have also had him on a Gluten-free/Cassein-free diet (the jury is still out on this one) for the past three months. I can't help but feel there must be some relief out there, somewhere.

Two nights ago, I discovered a new tic and its repercussions. Hopefully it won't turn into a full-fledged behavior that lasts months. I noticed that instead of hitting his ears, (possibly because of the sores on them) he began hitting his chest in a Tarzan-type motion, but with open hands. Later that evening, I took him to the pool and noticed he was not only badly bruised there, but also had a huge swollen lump. It was obvious the lump was an allergic reaction. It not only had a rash, but was puffy and warm. The only justification I can give for the allergy in that area is perhaps the material from his shirt being pushed against his skin irritated him. He is very sensitive to different detergents, and he had just returned from a couple days at his mother's house. Maybe she used some different soaps. Anyway, I gave him Benedryl when we got home and the swelling was down by the morning. I later found out that while he was at his mother's, she doubled the MethylAid supplement dosage, even though the doctor told us to decrease it a week prior when his arms broke out in allergic rashes. This could have caused part of the problem. (Unfortunately, she refuses to believe these are related, despite the fact that the doctor said there could be. Relations with her are presently very strained.)We have kept Alp on the lower dose and he seems to be better. I don't notice him pounding his chest very often, and the head slapping seems to be on its way out. (Thank God) The side slap is in full force, however, and he seems to be avoiding the usual area and hitting himself further back. To do this, he lifts his leg on that side and twists as if trying to hit his butt. He looks like a crazy cheerleader. I wonder if he's doing this because the side is sore. How I wish we could help him.Besides all these tics, Alp has been very good lately and quite calm. He did have an outburst in the car yesterday when I couldn't find the right song on the CD, but those moments are fewer these days. He doesn't complain at all about school and he gets up and gets ready for school nicely. Oh, there is one new area of concern. In the evening, he retreats to the restroom and will stay there until I insist he comes out. We think he is in a phase of "self discovery", which would be appropriate at this age. We are thankful he understands he needs to be in the restroom (actually this was a part of behavior therapy that worked), but it is getting a bit obsessive. Once he does come out, in a few minutes he disappears again. When it is time to go to sleep, the same thing happens.Since I'm devoting this entire post to Alp and his current tics and behaviors, the only other one he is really displaying right now is his usual vocal stuff. He needs to be speaking at all times, and right now, if he isn't reciting or singing something ("Celebrate good times...woo-hoo"), he loudly is doing his "AAAAh,-Ahhhh-Ah" sound. For us, this is barely noticeable. When we are out in public, however, it usually brings some quizzical stares, until they see him do some hand flapping or one of his self-slapping tics. Adults usually understand, but children tend to stare in awe. And the funny part is when babies or toddlers see him. I have seen them laugh as if he is performing a show just for their entertainment, or cuter yet, they mimic him!Life with Alp could probably be a blog all on its own, but that would require too much extra organization. I'll just periodically give updates about him here. Sometimes just writing about it helps me cope.

*Tourette syndrome is defined by multiple motor and vocal tics lasting for more than one year. Many people have only motor tics or only vocal tics. The first symptoms usually are involuntary movements (tics) of the face, arms, limbs or trunk. These tics are frequent, repetitive and rapid. The most common first symptom is a facial tic (eye blink, nose twitch, grimace), and is replaced or added to by other tics of the neck, trunk, and limbs.These involuntary (outside the patient's control) tics may also be complicated, involving the entire body, such as kicking and stamping. Many persons report what are described as premonitory urges -- the urge to perform a motor activity. Other symptoms such as touching, repetitive thoughts and movements and compulsions can occur. -Tourette's Syndrome Association, Inc.
**Alp's current medications and supplements:4mg Risperdal, 600 mg Trileptal, .5mg Clonidine EnZym-Complete/DPP-IV II, MethylAid, Taurine (1000mg), 5-HTP 100mg, Multi vitamin, Zinc Picolinate


At 5:00 PM, Blogger simon said...

well written, affectionate, and interesting blog.

if you ever get the chance, come visit me



my blog is (not nearly as menacing as it sounds :-) )


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