Friday, December 11, 2009

Peace on earth, just not at our house

I'm not feeling very merry this holiday season. It seems like I'm going through the motions, doing what I always do, not really enjoying it or loathing it, just sleepwalking. I find my mind is consumed with doubt and worry at the moment, and I don't quite know how to let the joy of the season push the other stuff out of the way. Everywhere I'm seeing the word "PEACE"- on cards, in ads, in holiday displays, and that's something I'm not feeling, but really long to.

I'm worried about our family. I'm worried about Sam struggling, which is nothing new for us, but now something else has crept in- my attitude has gone from bad to worse, and Tom is really stressing out. Bad days at school, inappropriate language at home, huge disproportionate blowups over seemingly insignificant things have left us feeling beaten up and defeated. Like nothing we try and no strategy we use seems to have any effect. It's like I see Sam slipping away right in front of me, and I don't know how to stop it. I feel weary from constantly "tweaking" things. For maybe the first time in 8 years, I'm wondering "Why me?" What did I do to deserve this kind of life?

Everywhere there are images of perfect families enjoying the holidays. They are in the cards I receive, in TV commercials. My friends' kids are singing in concerts, playing in ball games, writing out lists to Santa. My kid cannot even regulate himself enough to be in the same room with another child without blowing up. We've had two disasterous playdates this week. My heart is breaking because I see Sam shoving people away with two hands. I'm VERY thankful for the support of my loyal friends who hang in there with me, even when the going gets rough. I'm wondering how much more of it I can take. I fear that Sam's life will be religated to living with Tom and I forever, hanging out in his room because he has no friends, no job, no prospects.

What I want to know is, when does all this RDI, ABA, any other therapy kick in? We see flashes of it, but when the chips are down and learned skills should be put to good use, they go out the window, and we are back to square one. I feel as hopeless as I did during Sam's kindergarten year, only now it's worse, cause I feel like so little progress has been made from all this hard work. I know that there will always be setbacks, that life is really one step forward, two steps back. I usually am able to accept the situation for what it is. I'm usually able to see the silver lining in everything, and usually able to see the positive affects that Asperger's Syndrome has had on our lives. I'm looking for the strength to get to that place again, and wishing for a little peace this holiday season!

Tuesday, December 1, 2009

The Game Club

It's already December, and things at school are still pretty difficult. I'm trying not to let it drag me down, and instead I'm brainstorming new solutions. It's been pretty apparent to me for awhile now that one big issue we have is our limited exposure to NT peers. Sam is, after all, in what is definitely a self-contained classroom environment, his extra-curricular activities are limited to those that are fully supported, he doesn't invite kids over after school, nor does he know anyone enough locally to do that. So, we exist in the special needs bubble. It has long bothered me that there is no integrated solution- sort of like an inclusion classroom for after-school activities. So, we are going to create our own.

Enter the new "Game Club". I've convinced 2 of my most-trusted friends with neuro typical kids to be my co-founders. The concept is simple- meet in a small group (3 kids, 2 moms) once a week to simply play some kind of game. It can be a card game, a board game, an action game- anything just as long as it has rules and the participants each have some kind of protocol to follow. Sam and I have been practicing at home playing UNO. It has gone from being an abject disaster 6 weeks ago (Sam not being able to sit long enough to play a hand, having a meltdown when he loses a hand, playing by his own version of the rules) to being a big success about 90% of the time. Sam now plays by the rules, he sits and manages his own cards without me seeing them, and he can handle defeat fairly gracefully.

The purpose of the game club is quite simple- let Sam hone his social skills with neuro typical kids he knows, in a comfortable, sheltered environment. The comfort level for both Sam and I with these friends is very high- no judgement, no explaining, no fallout. We stay and play as long as it's a success. When things go south, it's time to wrap it up for the week. Slow and steady wins the race here. It will probably take months of visiting alternating friends' houses, but this is something I should have done long ago!

Once again, I am indebted to my wonderful friends. They continue to go above and beyond the call of duty to help us out. I don't know how I got so lucky- I wish I could say that I would be as understanding and accomodating if the tables were turned. They have saved my ass so many times that I've lost count. This is something that I am truly thankful for.

I hope to report back in a month or so about the progress of the game club. I fully expect it to take awhile to get into the swing of it. "Repeat, repeat, repeat" are words to live by when it comes to teaching Sam new skills. I guess one of my mistakes in this is not really comprehending that teaching Sam effective interaction with peers falls under the same skill category as getting dressed or learning to use the microwave. Taking the emotion out of it and replacing it with simple, bare bones instruction seems to make it much more manageable. Instead of me wondering why he is mean to kids to gain their attention, I should be thinking of it in terms of a user's manual. Master skill A before moving on to skill B.

Well, we'll give it a try.