Sunday, November 30, 2008

Where Have I Been?

Okay. Thank you James for checking on me. I can tell you what's been going on and it may take awhile.
First off, I used to think I had all the answers or at least was someone who had "been there" and might be able to use my experience to help others. At some point over the summer I decided this was pretty conceited of me. Everything I thought I had gotten to work for me fell apart and I realized I was still as ignorant about "the system" as I ever was. I felt as if I had been cocky and thought that I was through the worst of it. But the worst of it was waiting around the corner, ready to pounce on me.
I wanted this blog to be a place where I could be upbeat, and tell others that life sometimes seems horrible for us parents to Aspie children but that in the long run, these children are so amazing and such blessings and once you learn to navigate the system. And I do still think that my son is wonderful and I feel so lucky every day to have him and I love him now more than ever.
But life doesn't get better. It doesn't get easier. You think you know the rules but you never learn them; there are hidden traps everywhere.
So what was so horrible that I changed my whole thinking on this? Nothing, really. A bone-crushing depression that I suffocated through all summer long. The abandonment of my parent advocate who decided I didn't need her anymore. The decision of my son's day treatment program that they really didn't know how to deal with Asperger's children (they're mainly for children with behavioral issues due to trauma) and the early graduation that left Hubby and I struggling and freaking out over how to make our hours work so someone could be home at 3:30. A new job that I hate with a boss who has no children and is inflexible and seems almost resentful about my child who makes me come home after working 8 hours, while the other childless people work OT all the time without blinking. The raising of our Tefra payments to double what we were paying before. The panic of looking for a daycare in a city where we have exhausted all but one (we found the last one) daycare willing to take my son. It has to be in the city limits or the school won't bus him there.
The time spent begging the only school for ASD children between the ages of 6 and 10 to consider moving my child up on their list because they take NT children too and I gave them my son story. They didn't care.
The realization that there are no services for my son now that he's turned 6, until he reaches the age of 10. What do all of us parents do when our children reach the Magic Age Where All Services Disappear?
What else?
My son is at a home daycare and has been there for two weeks. This past Wednesday was the first day he spent there all day because school was closed. The daycare mom was annoyed with him for "making all the little kids wild." WHo knows what will happen? I don't know if he'll stay.

We interviewed PCAs before we found the daycare. I didn't want to do it because we might be able to use our PCA hours next summer. We interviewed one man that reminded Monster of the DCP who used to smack him in the head. He had nightmares for a week.

He graduated from his day treatment program two weeks ago. He has been wild and out of control at school since then, to the point where his teacher suggested we consider medication. First of all, that's illegal. But it annoyed me mostly because she needs to see that

a) Monster just left a program that he liked and kids that he considered friends
b) Monster is now spending all day at school and this is an adjustment
c) M is starting a new daycare
d) M got his orthotics adjusted and we were told the arches had been raised, and he would be in pain
e) the time change usually takes M at least a month to fully adjust to

I know there's more, but the point is, this is a stupid time to start suggesting that we medicate my son for being difficult when he is going through so much, and any one change is hard for him.

So to summarize, I stopped blogging because I don't have the answers and I don't feel so upbeat and I don't know how easy it is to raise an ASD child, even a high-functioning one, because it's not easy. It sucks, to be honest. Not because of my child, although Hubby still has trouble accepting that Monster is the way he is and being pissed off at him doesn't change him or his behavior. No, it's because society still doesn't know and seems to have no desire to learn how to help these children. They are popping up everywhere; I meet more and more people whose children have been diagnosed with Asperger's and high-functioning autism. But our school district has the gall to claim they don't have enough children to start a high-functioning ASD program.

I realize that I want to be someone who can help parents like me. I hate my job anyhow and if the economy wasn't in the toilet I would dump my job and try to find something more fulfilling. We have a huge Somali community here and their children are reaching epidemic proportions for the low-functioning autism, and I wish I could help them. Here they are, in a country that doesn't speak their language, doesn't understand their customs, and now their children are being diagnosed with autism in unbelievable numbers, and I wish I could help them.

I can't help anyone. I can barely handle my own life with my own one child. How can I help others?

Anyhow - enough of my pity party. I will try to blog again. I jsut sort of lost the fire, the anger that drove me to want to fix things and change a little slice of the world. I wish I could get it back, but mostly I'm just tired now.