Thursday, July 1, 2010

all in a day's work

Today we traveled an hour and a half for a professional to tell us Brian has autism, again. That mandatory re-evaluation you need to have to make sure he keeps on receiving his services.

It was an eventful day.

First it was the first time I sat in on an IQ test. The only other one he had was done at school and I was unable to get out of work to attend it. I was furious when I received a letter in the mail that said my child was "mentally retarded". I was mad that no meeting had been set up to explain this to me, I was upset that he was being labeled with this when I just knew in my heart that there was no way they captured his full potential. I've come to terms with the fact that no IQ test can fairly measure a non-verbal autistic child, in my opinion.

Today I was happy that the psychologist would let me ask the questions as well as long as I said them in the "standardized" way. It helped as he would sometimes respond to me when he previously wouldn't respond to her. I saw Brian answer some things I didn't think he could and completely ignore things I was positive he knew. I watched him deteriorate and at the end purposely stare at the ceiling, the floor, the window- anywhere that wasn't the table with the testing tools set up.

The psychologist is going to recommend that her program's consultation team go to our school. They go to the schools of their clients and help educate and set up a program specifically to the child. Our school district and Brian are both in desperate need of this service and it gives me a little hope that next year will be better than our last.

One part of the testing today was for me to fill out a standardized test, well I actually filled out three, but let's just talk about this one. Of course I can't remember the name of the test- that would call for an actual working memory. But it wasn't about Brian so much, it was about me, as a parent, and how I was "coping" with Brian. I didn't care for the wording. For example, "Is raising your child more difficult than you imagined before he was born?". Well I certainly didn't imagine I was going to have a child with autism, so yes, but I really (most of the time) don't find it difficult. I know that might sound weird, but this is just us now, and I have accepted it and I enjoy our family very much. Other questions asked if I sometimes resented my child, if I found it hard to make a connection with my child, I believe it even referred to my child as a "problem" at one point.

I know that parents have a hard time with children that have behaviors and our mental health can be fragile and it needs to be taken care of so we can in turn care for our children. I know that when Brian gets older that I may just have a harder time handling behaviors and feel inadequate if I can't keep him safe from himself. But at this point in time I didn't enjoy answering questions that just seemed so negative in their connotations.

At the end of the day Brian played in the playroom with our case manager while I sat in and talked one-on-one with the psychologist and I let loose about what we've gone through and where we are now. I weirdly cried a little when talking about Brian as a baby, I say weirdly because I haven't done that in a long time. The comment that stuck with me today was, "You have a lifetime of this. He's only just six." Wow, I've heard that a lot, I have started to accept it, but still every time I hear it my heart pauses for a second and I try to imagine it and I can't.

What a lot of rambling I've done tonight, this is just a clear representation of my brain and it how it works.


Lynn said...

My daughter is 6 as well...that quote was as hard for me to read as it was for you to hear. Of course I know that I am in for a lifetime of it, so why is it so hard to hear? Probably because I still hold out hope for her progress.

That questionnaire is offensive as hell...I've never seen anything like that. I would be paranoid that they were trying to entrap me and I'd have DCFS at my door. Crazy!

Christina said...

This whole post makes me pissed off...with the test questions and even the fact that you have to do it. UGH! (((HUGS)))