FoggyRock General Forum

We are really struggling to find services and appropriate ones at that, now that my son is 22 years old. He declined when he was 19 years old, after several emotional traumas (his half-sister acted out her own drama about her parents divorce upon Chris, literally UPON Chris, keeping him up most of the night and badgering him to give up on their dad (his only support there, his beloved dad), while Chris and Lila were in Texas visiting their dad for the summer, back in 2004. In addition to that, my father (C's grandfather) was declining quickly with Alzheimer's. C was very close to his grandpa. He started receiving SSI and didn't accept that he really had a disability. I started getting very sick with what has now been diagnosed as celiac sprue. It was all just too much for him. I think the ground beneath his feet had just shifted too much.

The school failed to call in an autism consultant and instead demanded that Chris be hospitalized. The next 3-4 psychiatrists all "assumed" that his age of 19 meant his "voices" were evidence of a schizophrenic break and started him on various combinations of anti-psychotic medicines. None of these have made any difference in "the voices." Consistently, I have been advocating that the "voices" are really his own issues (it doesn't make sense to him that the govt. would just send him a check, with no strings attached -- he has thought he would be expected to go to Iraq (I keep telling him that I'd never let him go to Iraq) or have to pay it back sometime. He really wants to get a job so that he can get off SSI (and therefore not be disabled?). He has some faulty logic going on, but it's pretty understandable logic streams, at that. He's always been a pretty logical guy, really a whiz at logic games such as chess, stratego, risk.

The good things right now. The current psychiatrist is older and has been listening to my assertions for the behaviors as being "autism behaviors." Finally. I believe at C's next appointment, he will start decreasing the anti-psychotics and start looking at anxiety medication instead. Chris does music therapy weekly and the music therapist is doing very well with him. Chris enjoys it and actively engages. I try to incorporate music at home as much as possible, too, even sometimes creating rap-type-songs for various communication around the house.

He doesn't talk as much as he used to. He used to be quite verbal, humorous, laughing, and fun-loving. Now he is very worried, anxious, and laughs only with a worried kind of paranoia at something going on in his own head.

After "losing" my dad to alzheimer's, this has been heart-breaking for me. It's like I have "lost" my son. I keep trying to find him, and there's off and on little breaththroughs, something like a little breeze bearing lilac scent for a moment.

The school has been nearly completely ignorant about autism behaviors and how to help him. Where they have programs in place for early childhood and elementary students, they have nothing appropriate for transition-age students. Here in Michigan, special education students can continue with public education until they turn 26. That's great, except that so far, the school programming has been junk for Chris.

I'd love to hear some ideas for how we might better help Chris. It's hard to find a therapist to work with him, as he's not a sit and talk kind of guy. It's hard to get people who are used to working with young kids being able to age-up their approach. The school program is starting a SCERTS program, but I have my doubts that they will be able to make it age-appropriate.

I'm really missing my son!! He's such a great guy and honestly, through these past difficult 3-1/2 years, he's been pretty doggone patient with all of us.

thanks,
Nessa