Thursday, August 7, 2008

What happened to my little guy?!

Another Very Very Bad Day. It seems that Jaymes gets a little bit worse each day, and no one will acknowledge it except me. That is very frustrating, because I know it's not all in my head. Jaymes barely talks in real words anymore. It's always "I'm sorry" over and over, but without any actual meaning behind it. And "OWWWW!"

I feel like he's regressing faster than anyone could have imagined, and that no one is taking it seriously. Even the docs at Duke aren't understanding. It can't wait until October. We need something NOW.

Every day it's screaming, whining, trashing the house. All day long, unless something new and unique is happening (an unusual person at the house, a trip to grandma's, a new occupational therapist) he screams and fights and acts like the child from hell.

We went to the library this morning, where Jaymes was good for a few minutes. Then he went to the kid's play corner there. There were 2 little girls, 7 months and the other a 2 year old, playing there. Jaymes went to the puzzle shelf, behind the kids, and took his favorite foam puzzle. This was fine, but then he had to run back to the shelf and knock all the puzzles down, throw the pieces, and nearly hit the 7 month old in the head with the back of the puzzle. Both mothers shot me the death glare, and I tried, quietly, to get Jaymes to follow me. Of course he wouldn't. I grabbed his arm, and he threw himself on the floor, screaming. Jason carried him out of the building, yelling bloody murder.

Then we had therapy. He was ok for the occupational therapist, then in the waiting room had a fit and starting head banging on the floor. Went in with the speech therapist, I could hear him screaming loudly from the waiting room (I don't go in with him for that one). I think the speech therapist gets it. She said she'd make a call to one of the autism specialists around here. I hope she actually does.

During the wait between speech and PT, Jaymes went crazy. Screaming as loud as he could, slamming his head into the wall and floor, flailing and thrashing all over on the floor. When Ipicked him up, he hit and kicked and threw himself back down. He did more of the same during the PT session, and I get the feeling that therapist wasn't too thrilled with him either.

What I wish would happen... If somebody (preferably someone useful like a doctor or therapist) would just see that Jaymes is becoming more and more uncontrollable, angrier, unhappier, violent, and REGRESSING. He's not talking anymore. He's babbling like a BABY. He screams out "I'm sorry" randomly, with no apparently meaning. He cries out "owww!" all the time, like I'm hurting him.

Everything we're doing now? IT'S NOT WORKING. Why won't anyone pull their heads out of their asses long enough to see that? Why does no one understand that we need something NOW? Not six months from now, not a month from now. N-O-W.

Jason can't stand him. Jaymes cries all day long. Sierra cries when he cries. I can't take a shower, or go into a room and close the door unless Jaymes is in with me. I go out to clean the pasture, and Jaymes is hysterical and almost blue faced by the time I get back. Jason has to lock him in the house to keep him from running out to me. I can't have a moment of peace and quiet.

And you know, we did get approved for respite. But it's not going to do him any good. Nor will having my mom watch him. Everyone else teaches him things that make life harder for us, or let him get away with stuff, or baby and spoil him and then it's just another thing I have to deal with.

I feel like I'm losing my mind. I can't sleep, I can't eat, and my memory is worse than ever. I can't remember if I've just watered the plants 5 minutes ago, or if I went to the bathroom to wash my hands. I can turn the hose on, and 2 seconds later, I don't remember if I did it or not.I've always joked that Jaymes would put me over the edge, but at this point, it may be more than a joke.

You're not supposed to dislike your kid. You're just not.

2 comments:

Puh-leeze said...

Hugs.

squid said...

I am sorry this is happening to you both right now. A lot of time children with autism show more behaviors as they age and become able to demonstrate them.

This is jumbly because of personal overwhelm, so bear with me. And I apologize for not having the history that I should about your son and approach; you may have covered all this already -- do you do any behavioral therapy, do you have any icon-based schedules, have you had him evaluated for sensory issues?

It may be that for now the library is not a good idea, which sucks if it is part of your routine. Too many people, too busy, too overwhelming. Might trigger his behavior that you describe.

My son does best when he knows what is going to happen next, what his day is going to look like. An icon-based schedule has been critical critical critical to help him with this. Or even just telling him the next two things we're going to be doing. If you implement this and also show respite people and friends to use it, it can make babysitting five hundred times easier.

Behavioral therapy is something you can do all day long. You don't have to have a drills and data-based ABA program to do it; you just have to understand the reinforcement and fading system. The best example of this is something most parents do: sticker or reward systems for toilet training. Most nine-year-olds no longer require a reward each time they use the potty properly. This approach can be used for all desirable and undesirable behaviors. Pick your battles, decide on two or three things you want to work on with Jaymes right now, and give it a shot. I am a fan of Catherine Maurice's Behavioral Intervention for Young Children With Autism tome; it is for family as well as professional use.

Try to find local friends who have children with autism. Many areas have local email boards for parents of kids with special needs. Make these people part of your daily life. They understand, they will help when everyone else "Just Doesn't Know What to DO!"

Finally, I recommend Susan Senator's Making Peace With Autism. And reading her blog.

Hope this helps.