new to group

[Guest guest]

Hello everyone,

I have just found this group and this is my first post. I have a 14 year old son with autism, moderate to severe. He was diagnosed at age 3. He has a lot of sensory issues and biomedical symptoms that often accompany ASD...he seems healthiest and happiest on a GFCF diet. He attends public school and receives speech, PT, & OT. He has regular consults with a BCBA and his current program at school is based on Verbal Behavior. We started out with a home-based ABA program (discrete trial) and the program has evolved over time, with the school system taking over responsibility for supervision (which has been a blessing, financially). At first I was very gung-ho about behavioral intervention (those of you with kids the age of mine probably also read "Let Me Hear Your Voice"), but as time has gone on I've seen that one of his most important needs is his sensory integration dysfunction.

That's the background to try to get to where we are today... I'm hoping to connect with some parents in similar circumstances to mine... I'm at a point where I could really use some emotional support. I didn't really have a lot of trouble accepting his diagnosis 11 years ago... I was able to throw myself into early interventions (ABA, diet, auditory integration) and saw him make major improvements (for which I'm tremendously thankful). But now... he's growing up, he's still primarily nonverbal, not bowel-trained, not at all independent, and suddenly I'm overwhelmed with anxiety and grief. As I type this I'm afraid that what I'm writing sounds like this is all about me... I don't mean to sound that way. It's about him... I want him to be safe, secure, happy, and loved for his entire life, and I know I won't always be around to take care of him.

My son (I'll just call him T) has no siblings or close family. His dad (I'll call him F) and I divorced about 2 years ago. I noticed some posts here about family history of ASD & other disorders...I've read that depression also commonly appears in ASD family history. F suffers from depression and borderline personality disorder, and during our marriage wasn't compliant with his medication & therapy... I endured 21 years of physical & emotional abuse, because I didn't think I could get away. But then he started becoming aggressive toward T, and that was intolerable. T & I moved out. F didn't take it well. The past 3 years have been full of restraining orders, court appearances, threats, stalking, etc. But finally he seems to be following through on professional help for himself, and he's stepping up to the plate and becoming a good father... although we still have no contact. T has a Medicaid waiver slot

that provides a personal attendant who handles the transportation and is able to supervise at least part of the visitation (supervision is not court-ordered, because F hasn't posed any threat to T during our separation & divorce. The one good thing about my leaving seems to be that he's determined to make a good relationship with T.)

I may be straying from the topic, but it's all background that I feel is important in understanding where T is now. He's seen a lot of abusive behavior directed at me in his lifetime. So that may have played a role in him becoming aggressive also in the past year. He started this head-butting behavior (with me, his dad, his aide at school) and hitting himself, and punching walls. He made several holes in the drywall in our home. The triggers aren't always clear. Sometimes we suspected he might have felt bad, had a headache (the head-butting seemed to coincide with wanting deep pressure on his head)... sometimes it was out of the blue. He woke up out of a sound sleep & punched 3 holes in the wall beside his bed. His BCBA suggested that it might be complex partial seizures, but our family doctor didn't think T would cooperate for an EEG so he placed him on a low dose of Topamax... mostly to stabilize mood. He (Dr.) doesn't think T is

having seizures (but how can he really know?). The Topamax seems to help... during the first week T smiled & laughed, and I realized how long it had been since I'd seen him do that. He used to be sunny, happy-go-lucky, singing... now he's mostly quiet, solemn, sometimes seems anxious or angry. Sometimes he still cries, this heart-wrenching sobbing, and hits himself (has blacked his eyes)... and can't tell me what's wrong. So it's the agonizing guesswork: is it pain? hormones? Did something happen at school? Is he grieving because his parents are apart? Did he inherit a depression/personality disorder (present in my family history too, not just his dad's)? I mentioned that Topamax helps, but I have a deep fear about it... there's a rare side effect that leads to a glaucoma-like condition and blindness. Although it's rare, all the literature warns to get immediate medical attention if you experience blurred vision. Well, T's

visual perception is probably his most severe deficit. He can't tell me if he has vision changes, and I won't notice, because things are never "normal" with his vision. He resists writing, using computers, has difficulty with things like walking on stairs. He has an appointment with a develpmental optometrist coming up the end of this month. I'm praying this might be one key to helping him find a channel for communication. He can verbalize concrete needs (what he wants to eat, for example) but doesn't communicate things like pain, sickness, or emotion.

Okay... if anyone is still reading, first of all THANK YOU for listening! And I would appreciate any suggestions or just comments of support. I feel very isolated. We have a local support group, but none of the other parents I've encountered seem to have the same issues going on... of course, we all know that our ASD kids are totally unique, that's a given... but for example, I haven't encountered anyone whose child needs the GFCF diet like T (he has terrible GI issues with gluten & casein). And, it's difficult for me to even attend the support group meetings (I suspect I'm not alone in that) because T can't really go with me. Most of the time child care is offered, but it's young people volunteering who really don't have experience, and T and I both are too apprehensive about that. Plus food is always an issue, there are crackers & cheese everywhere, which are a big no no for him.

Thank you again! I look forward to finding some friends here and I sincerely hope along the way I'll be able to be helpful to someone else... In my opinion that's about the only comfort to your child having a disability... when you can actually provide support to someone else struggling with the same issues. (Well, that plus how you learn to appreciate every tiny little victory.)