• I have been fighting back tears all week since Liam’s latest IEP meeting. For those of you not familiar with the term, it stands for individualized education plan, and it’s for kids with disabilities or learning disabilities. It’s a meeting at school where the entire team of educational specialists, teachers, principal and parents discuss and formalize what supports will be in place over the next school year.
Liam loves school, and he is always excited to go and see everyone there. He loves to do his worksheets, reading, math, speech therapy, all of it. He always has an aide with him. He’s in a regular classroom most of the day, with pullouts for individualized help in some areas. But he really wants to be in the regular classroom doing what all the other kids do. He probably doesn’t even realize he’s got modified assignments. The aides assist him with his classwork and make sure he doesn’t disappear, the thing I am always most worried about.
I have never found IEP meetings to be stressful before. It’s always been pretty upbeat, with everyone gushing about how much they love Liam and how sweet he is. He has made wonderful progress each year since kindergarten. Considering he still only spoke maybe one or two words at a time back then, and today he speaks in full sentences and communicates quite well, I would say there has been pretty remarkable progress in the last 2 1/2 years. But it’s still hard to see your child’s data saying he is in the bottom 1% academically. We have been doing this for a while now, so we are somewhat used to that pit in your stomach feeling when you see stats like that. But the good news is he has mastered most of the goals that were set for him, and everyone is excited about his progress.
But this year there was an element to it that hit me hard. (Tom was working, so he wasn’t able to attend the meeting.) Liam is in 2nd grade going into 3rd, which means TCAP’s, or the state standardized testing, will start next year. We have to make a decision as a team what path Liam is going to take. I had assumed I didn’t want him to take the tests. I know he won’t be able to perform well, and why should we put him through something stressful just to see him fail? But what was explained to me at the meeting is that would mean he would begin an educational path that would mean he won’t be receiving a real high school diploma upon graduation. I was taken aback. I don’t know why I didn’t realize this. I usually research and am well prepared for things like this. I put so much energy into finding all the right therapies for Liam when he was younger, and was feeling good about how things were going in elementary school. But hearing that I have to make a decision now that will effect his long term future took me by surprise, and it was a hurtful thing to think about.
I have always known there was a good chance Liam would need assistance throughout his life, and chances were good he may not be able to live independently or have a high paying job. But we certainly don’t want to underestimate him. Sometimes children with autism make amazing progress and grow up to lead very productive lives. Of course we want to have the highest of expectations and challenge him to do as well as he possibly can.
But as I imagined him not receiving a real diploma I instantly imagined all the challenges that would present in his life. So I went to Google university to see what I could decipher about what this would mean. It’s bleak and depressing.
It means he won’t qualify to go to college, even 2 year community college. He won’t be able to vote? I’m not sure if this is true, but that’s what I read somewhere. He probably won’t be able to drive, especially since he has epilepsy. He can’t join the military. That’s fine by me. But I am devastated all over again. I just want him to have a chance, and we may have to make a decision right now when he’s only 7 years old that will follow him throughout his life.
Apparently no child left behind, which tried to keep standards high for kids with disabilities, isn’t so flexible toward the needs of kids with autism. Often they are very smart, but need direction and help with testing. They will be able to make certain accommodations for the test, like extra time and help with filling in the tiny bubbles, something Liam would not be able to do right now. But there’s nothing they can do if Liam doesn’t want to follow directions, or if he finds a certain answer funny and wants to mark that one because it makes him laugh. He has to have the stamina to get through hours of testing. Even with breaks, this will be very hard for him. He may be able to perform poorly on the test and still get promoted to the next grade level. Who knows, I guess it’s possible he could surprise us again by this time next year and progress beyond our expectations. But if that test were next week, I would know he couldn’t sit through it or really comprehend what was expected of him.
So does this mean if he doesn’t take the tests his fate is sealed? He is destined for unemployment? What kind of job can you get these days without a high school diploma? How in the world are we going to come up with enough money to make sure he’s taken care of for life? What will happen to Liam when we are gone? Is Lilah going to have to be his caretaker?
The thoughts racing through my head once again have me worried and afraid. The only solace is there are so many other families living the same reality. Surely things are going to have to change. Surely educational programs are going to evolve to work for kids with autism. Someone will figure out how they can become meaningfully employed, right?
I don’t know. It hasn’t happened yet. Right now, the political discourse in this country doesn’t seem to have much sympathy for those with disadvantages. It’s heartbreaking. Yes, I’m feeling sorry for myself and my family right now. Hopefully next week I’ll be back to warrior mom mode. The best I can do is turn that negative energy into something positive, and get to work. World help us make Rock Your Speech a success, both for Liam and for other families living with autism.
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