Susan Senator

Dear Autism Mommy Swami,

Charlie is twelve and going into “sixth” grade next year. I say that with quotes because he is on a second/third grade level. When we found out in fourth grade that he was able to read and spell like a wiz, but was functionally illiterate, not knowing what any of those words meant, I took him out of school and put him and the other kids into K-12.com. Charlie had never been in a special education class, he had supports and an aide (who was doing his work for him) but the school had no such thing as an “autism class.”

After enrolling my three kids in K-12.com, we set up a program where Charlie would be in second grade and I started language with him from the basics. Charlie was becoming more and more conversational and was listening to stories that I would read. He was able to tell me what the stories were about. He was getting so much from the work that we were doing. We had gotten as far as prefixes when we moved and my 2nd grade daughter launched a campaign to get back into school because she missed kids.

Back they went. They went back because I was exhausted. They went back because I had hopes that here in Pittsburgh, when they offered an autism class, they would reach kids on a level that I couldn’t. Because they are the Experts.

They had an autism program for Charlie, and they promised to keep working on the meaning of every single vocab word with Charlie. For the first time in his life, he was placed in an entirely autistic classroom. Here is what we have found:

1. He’s back to not knowing the meaning of words and now he’s losing pronouns and the ability to use superlatives (better, best). He will not read anymore.He can not follow a story and give the salient points of even a short story.
2. They are NOT working on words with him.
3. He’s been working on the same times tables since we started him in December. He knows them well, but they are not moving on at all.
4. He’s hitting himself and grasping others and squeezing. Not at school, but at home. There is a child in the class who acts out in this manner.
5. He’s developing or mimicking autistic behaviors like mad.
6. He is complaining of headaches or stomach aches to try to get out of school in the morning. He vomits at night sometimes when he thinks that will get him out of school.
7. He says that he being “taken to the principal’s office” daily, the teacher reports that he has never been to see the principal, but this is the threat that they use to get the kids to settle down. He does not know who the principal is or what would happen there, he’s terrified.

I stopped cyberschooling him because with his sister going to school, he stopped working with me and it was a constant fight. I am considering re-enrolling him and just perking up the day a lot more with fun things, possibly changing up the school for one that has better special ed support, although K-12 rocked at special ed. I guess I am just looking for some support. It is hard to homeschool, harder than I ever thought, but after only 6 months at this school, I see reverse progress, especially socially.

In this district they will not integrate him into the classroom because he is so far below grade level. And because he’s very tall. His height is prohibiting him from interacting with his true social peers. He is a third grader at heart. What would you do?

Jan

Dear Jan,

Thank you for writing. I think that you’re seeing a poor fit for Charley in the public schools, where they won’t place him with the third graders simply because of chronological age and size. It really pisses off The Swami when others don’t see our guys as the unique people they are. Some may call it “splinter skills,” which I suppose means something like this: a few promising shards break off from the otherwise amorphous static lump. But that’s like seeing not the forest, not even the tree, but only the bark! Clearly Charley’s got it going on; I have known of him for at least six years and I have watched his progress, his blogging, his art. One thing I feel I must ask: Is Charley a third grader at heart as you put it, or is it more that he can benefit best from many aspects of the third grade class and curriculum? In other ways he benefits on his own or with his sibling — and with you. I ask you this because I want to encourage you to keep seeing Charley from a kaleidoscope rather than a microscope, in his full potential.

His school is sadly myopic and guilty of square-peg mashing. This is what Autism Swami sees again and again, institutions and others viewing our guys as static. Why can’t Charley be switched around during the day, benefiting from third grade material when he needs to, and other grades and children for other times? Why herd him into a classroom where he regresses?

You are seeing that your own program at home made a world of difference. You know how hard that is for you to do, though. I’m now thinking of a powerful autism mom I know who came up with her own hybrid program for her guy, partly at home, partly at school. She had her own teachers at home — granted that is likely exorbitant for you, me, and other mortals, but this mom had those kind of superpowers and the purse to match — and other parts of the day her guy benefited from his peers at school.

You have to think about what is right for Charley and for you, because if you’re exhausted you won’t be happy. And if he’s tossed into an inappropriate grade and classroom, he won’t flourish.  Is a combo what you want?

I wonder if you can do this in a few stages, with the goal of a hybrid of home and school. With the ultimate goal being a mixture of both your program and the best of the public school programs (maybe some mainstreaming, and a little one-on-one skill-building in the autism classroom?) First of all, stick to your guns, trust your gut, etc. You know what is right for Charley. You probably even have documented proof. Perhaps take him out and go back to your home program with the knowledge that this is a diagnostic period, not forever. That will help you feel less tired out. During this time, keep records of all of Charley’s success. Perhaps at one point you could get an educational consultant to witness his work.

Second of all, figure out what are your connecting points with the school. What have they done well, what have they done right? Where do you agree with them? This would be your starting point in negotiating with them. The idea would be that you show them that Charley is doing so well in this Charley-specific program, but that he could also benefit from the school expertise and peer groups. Get them on your side if you can by keeping the conversation focused on what Charley has accomplished at home, how wonderful that is. Keep them on your side by showing them the positive experiences he has had on the third grade level. Staying true to your goal, keep it friendly and positive at all times. Learn from Autism Swami’s mistakes when Nat was 10 and she snarled and bit everyone in the room and vanished with him in a puff of black smoke.

As hard as it can be, Autism Swami has learned that it doesn’t have to be all-or-nothing, if we need the help of others. If you can do it alone, do it alone. But if you think there’s a way to benefit from the school part of the day, maybe there’s a way to get that. You’re in the driver’s seat. You’ve done this successfully before, so you know you can do it — although you’ll be very tired. You can be the author of Charley’s education and magnanimously welcome the school people in — or not.  Know your power, feel your power, keep hold of what you know about Charley, and that will keep you on the right track. You’ve taken him so far already, but don’t be afraid to ask for help from the school. Don’t be afraid, period. And you, Jan, know what I mean…

Love,

Swami