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George’s New Hat

14 May

When my Mom came from South Africa for my wedding, she came bearing gifts for the boys. Among other things, each of them got a new hat. James wears his because it’s cool, and because none of his friends at school has an “Africa hat”. George wears his because he’s weird about hats. For George, a hat is not just a hat. It’s an essential part of his routine, one that he feels completely lost without.

George’s previous hat was provided by my Mom as well. She mailed it over to me about a year ago, and since then it’s been practically glued to his head (except for the times when I sneak it into the washing machine while he is sleeping). The new hat is identical to the old hat. It’s got the same “South Africa” lettering on it, and it has the same animal pictures in the same pattern. The only difference is that while the old hat was cream-coloured, the new hat is blue.

For George, switching hats is a big deal. Imagine what it would be like if someone decided to remove your head and replace it with a new one. It may seem like an extreme example, but that is, for George, what switching hats is like. He got so comfortable with the old one, and so used to it, that getting rid of it was an unbearable prospect, one that resulted in meltdowns and anxiety attacks (mostly on George’s part, but a little bit on mine too).

There were house guests galore for a couple of weeks leading up to the wedding, and that in itself was a lot for my routine-dependent child with autism. Gerard suggested that maybe this was not the time to switch hats on George, and I had to agree. So we left it for a while. By last weekend, things had quietened down considerably. The wedding was a week in the past, and the only guest remaining was my Mom.

During a rough-and-tumble moment of play, George’s hat fell off. On a whim, I grabbed it and shoved it into the washing machine (it was starting to smell a little gamey). I took out the new hat and put it on George’s head. Predictably, he went ballistic. Screaming, kicking, tossing the hat away from him, crying with utter distress.

Fortunately, the old hat was not an option. At that moment, it was wet and sudsy and being tossed around in the washing machine.  So there was no choice but to persevere with the new hat.

As George tossed himself screaming around the floor, I maneuvered him onto his back and sat on his legs, leaving his arms free. The hat was on the floor behind him, but within his reach. I looked into his eyes and started throwing out sums at him.

What’s four times five?

What’s three plus four?

What’s twenty minus six?

And so on. Each time I tossed out a question, George answered it. He seems to have a genuine love for numbers, and this technique is proving to be a surefire way of distracting him when he’s upset.

Sure enough, he gradually calmed down. When he started reciting times tables, I knew we were close. And then, slowly but surely, while he was still reciting his times tables, he reached behind him and casually put the new hat on his head.

It was a minor battle, but it was a battle nonetheless. And we won it, me and my boy.

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The T-Word: A Scary Word For Autism Parents

13 Apr

This morning heralded the beginning of a new phase in my life as a special needs parent. We met for the first time with George’s transition planning team to sign the paperwork that kicks off the process of transitioning him to full-time school.

Any parent of a child with autism will tell you the same thing: that the word “transition” is one of the scariest words in the English language.

“Transition” means that the routines that pretty much hold the world together for a child with autism are about to be turned upside down and inside out.

“Transition” means that there are likely to be meltdowns, that for a period of time my child’s anxiety will be mirrored in his eyes in a way that will make me want to weep, and that the entire family will be without sleep as George makes the adjustment to his new reality.

Despite the fact that this is a process that makes me fraught with anxiety, it is a positive thing. When he started IBI therapy two and a half years ago, George did not have a lot of skills. He had virtually no vocabulary, no self-help skills, he couldn’t follow directions, he couldn’t interact, his emotional regulation skills were nowhere, and he had all kinds of fears that made his life very difficult. There was always a spark in him, though; a light in his eyes that made people sit up and take notice.

After two years of full-time therapy, the progress in this child was off the charts. It would be a stretch to describe him as fully verbal, but he was making requests using full sentences, he was starting to interact in a limited way, he was no longer afraid of the dark, he was starting to verbally express emotion, he was able to follow instructions with multiple steps, and in a giant cognitive leap, he had started to display his quirky sense of humour (deliberately being funny for the purpose of making other people laugh is huge. HUGE!)

And so, six months ago, the decision was made to cut his therapy in half and graduate him to the next program up. Instead of traditional IBI therapy, which is intensive one-on-one programming, he is now in a School Stream program, which is conducted in groups of five. It is a simulated classroom environment, designed to help children with autism learn the kinds of skills needed in school. There is  teacher who leads school-type activities, and each child has his or her individual support person to help with prompting and reinforcing.  The children in this program attend School Stream for half of the day, and actual school for the other half.

It has proven to be a very effective program for George. It has helped improve his social communication and interaction skills – areas that remain difficult for him, that traditional IBI therapy is not designed to address.

And now, effective from September of this year, George is being deemed fit for full-time school. This is a testament to the progress he has made, both in IBI and in School Stream. His teacher at school, who has had him half-days for the last six months, is excited to take him on full-time, and he will be with her for at least two years. At our last meeting with her, she had glowing things to say about George. He still struggles intensely with social communication, and he is not nearly verbal enough to hold his own in a conversation, but academically he is flying. He has developed the skills to function, and function reasonably well, in a classroom setting, even if it is a modified classroom designed for children like George.

That George is ready for this transition is a positive thing indeed. It is something that makes me so proud of him. He has had to work so incredibly hard to get to this point.

But still.

The process of transition is not going to be easy, which is why the planning starts six months before the transition takes place, and does not end until six months after the transition has happened. This morning’s meeting with the transition planning team was the first of what will be many. From what we’ve been able to tell, there will be good supports in place for George and for us over the next year, in order to ensure as smooth a transition as possible.

I cannot help being anxious about it, though. George’s departure from the therapy centre will mean the removal of a layer of support that we have had for the last three years, and although George might be ready for it, I don’t know if I am.

I might just have a harder time with this transition than George will…

(Photo credit: http://www.flickr.com/photos/misskprimary/1038145678)