Wednesday, March 25, 2009

Disability Awareness (Are We There Yet?): Part 2.

In Part One of this post, I discussed the issues we face as parents of a child with Autism. The constant worry of how he is treated, ensuring that we surround him with people that love and support him, and how we know that ultimately, we can only control his environment for so long.

This is Part 2:

This morning I met with what I like to call "Team Max", or at least the daycare component of "Team Max". There is also the Blue Balloon component of "Team Max", but I'll save that for another day. Today I sat on a little plastic blue chair, at the head of a table that barely reached my knees. The five other adults at the table included Max's daycare teacher Jennifer, Occupational Therapist Kathy, Resource Consultant Joyce, Speech Pathologist Michelle, and Behaviour Consultant Esther. Team Max indeed.

We were meeting to review Max's progress since the last time this team met, 6 months earlier, and to discuss our strategy for moving him from the Toddler room to the Intermediate room where he can be with his peers. I expressed that my main concern is that he will get lost in this room, and that these older children will not be as kind to him as the toddlers are. Maybe they won't want to play with him because he rarely seeks other children out. His crying when he gets stressed might scare them, his need to sit alone in the corner and bang his head on the wall will likely be misunderstood. There will be 23 kids for him to navigate. The noise of 23 other kids to filter out. 23 other kids in the cloak room when they get ready to go outside. 23 other kids eating lunch with nobody necessarily focusing on Max to make sure he is eating. 23 kids and all of their parents. 23 + 46 = 69 new people in Max's world. My heart is speeding up at the very thought of it.

Each person at the table comes with a different area of expertise. His current teacher will continue to visit him, brief his new teachers on all things Max, and make sure that he is doing okay with the change. His Occupational Therapist is scoping the room out to make sure it is safe, that he won't get himself into trouble, and is proactively looking to find solutions to problems that haven't arisen yet. His Speech Pathologist is sharing tips with all of us on how we can promote more language with Max, how we can help him make his needs understood. His Behaviour Consultant helps us all to remember that there is always a source to behaviour, be it good or "bad", and to look for the source when Max is acting out so we can better understand the cause of his frustration. His Resource Consultant helps us put the puzzle together, and has even applied to Halton Support Services for someone to come into the daycare for a month or so when Max finally does move to help him transition and to make sure he has the support he needs to settle in. And me, I'm just his mom - the one with the PhD in Max and the heart that worries so much.

The main thing I want to do for Max before he moves into this room is to write a social story for him to help him understand how his world is changing and to prepare him for it. The other key component is preparing the children and their parents for Max's arrival so they can understand him better, and make an effort to include him in their play. I am going to write a letter to each parent, letting them know about Max, his diagnosis, and what a wonderful little boy he is. I am also going to highlight some of his challenging behaviours for them, so they will know what is going on if he is having a meltdown, banging his head, or just sitting in the corner tossing toys over his shoulder. I will include a story about Max as well, and encourage each parent to read the story with their child so that they can understand why Max is how he is.

What does one say to a group of three and four year olds about Autism? I am thinking the story will go something like:

This is your new friend Max. He is three years old.
Max doesn't have a lot of words yet to talk with, but understands most of what you say.
Max likes puzzles, cars and trucks, books, bead toys, and balls. He also likes to run, listen to music and sitting for circle time.
Sometimes if it gets too loud, Max gets sad. He will be okay, he just needs to be sad for a little while.
Sometimes if Max gets worried, he bangs his head. He will be okay, he just needs to work his wiggles out, and he isn't hurting himself.
Max seems like he is shy, but he would like to play with you. If you invite him to play, he may not always come, but we hope you will still ask him. The more you ask him to play, the more he will want to play with you.
Some days Max has a hard time sleeping at nap time, and he cries. He does not mean to wake you up, he is just having a hard time.
Max is funny, and a very nice boy. When you see him, you can say "Hi Max!" and he will probably wave hello to you.

That's just off the top of my head. I'm sure there is more that I will want to say to Max's new classmates. Suggestions are always appreciated!

CVS Caremark - All Kids Can


  1. good question. We have not "outed" our son to himself, his siblings, his peers, classmates, etc. We intend to introduce it within the next year or so as autism was something he had and he worked really hard and so did everyone else, and now sometimes once in a while he'll feel a certain way and it will be because some of the autism is sneaking back in but that we'll deal with it as it comes up.
    don't know if there is a right way....but that is how we're doing it and there have been no issues....and he's nine now.
    Kids are pretty accepting...they get less forgiving once out of primary school level.

  2. Definitely something to think about. We still have some time to consider how to best handle it. My friend Kat's daughter Lillie is in the Intermediate room, so I'll likely ask her how she handled it when Lillie moved up.

  3. My 13 years experience of having an autistic son (Aspergers)have been a terrifying, exhausting, thrilling experience. I would NOT give it back. My son has made me a better human being, woman, mother, friend and definitely, teacher (I teach grades 7 and 8). May I say that I am honoured to have such an amazing friend as you, Kat. You have only 3 years experience and you have already taught me so much.

    I hipe this is helpful: When I explained his recent autism diagnosis to my Sam, he was 8. He had already expressed the question, "Mom, maybe I should just die. Wouldn't that be easier on everyone?" But now I told him that he just had a wiring problem in his brain, kind of like when some people's legs don't work, or their eyes don't work. It was something we could work AROUND. He wasn't BAD. Honestly - this knowledge saved his life.

    I too had struggled with "outing" him to his peers. But the thing is - they already know. I once had a classmate of his tell me he was "crazy" (grade 1). I went home in tears, but you know what? They know. And better still, they really want to help. My advice is fill 'em in. They'll feel good having the right tools. They'll know what to do. It will get better as they get more skilled. Max will sense them trying and appreciate it.

    Hey! Bravo! to the kids with autism, the families of kids with autism, and all the autism professionals who work so hard because they care so damn much. Sam is my hero. Max is my hero. And you too - Kat. You ROCK.

  4. Many adults who get diagnosed FIANLLY get a tremendous sense of relief....they can finally make sense of themselves in the world and know that there is a reason they are how they are.

    I think it really needs to be taken on a case by case basis and where child is on the spectrum. There is definately a time for the outing and it is different for every child. Like they say, if you know a child with autism, you know ONE child with autism.

  5. Anonymous9:35 p.m.

    I think that story for the other children is fantastic. Thanks for sharing it Katrina!

  6. This brought tears to my eyes. Love your writing style, and would have to have you write for Autism Sucks.

    I created the blog as a forum for parents who are dealing with autism in their children. Sometimes, you want to say things that just don't fit on your blog...that's where we come in.

    Also, the social story for the kids is wonderful!! Truly.