Thursday, September 30, 2010

how many adults does it take to screw in a light bulb with autism?

Eleven. That’s how many.

I sat in a room this morning with ten other adults and talked about my son for 90 minutes. It was really hard. His teachers and EAs are frustrated with him. I get it. When he isn’t happy, nobody is happy. When he tests you, it makes you want to pull your hair out. Add to that they have a bunch of school board rules about not being able to hug and tickle and even restrain him and wow, you have a recipe for disaster. Also, they don’t love Max yet, and he doesn’t love them yet either. Oh yeah, while you’re at it, throw 16 other kids in the mix and their parents too.

What blew my mind as we sat there – all eleven of us (me, his JK teacher, his ECE teacher, 2 EAs, the school principal, the head of the Halton District Autism Team, the Autism Team SLP, the SERT (Special Education Resource Teacher), his Resource Consultant from the Municipality and his Senior IBI Therapist, was that this little guy is truly brilliant. It takes eleven adults to figure out how to manage a single 4 year old boy. Score one for Max. I’d be impressed if I weren’t so busy putting on my happy/collaborative game face when on the inside I’m having an anxiety attack.

So how do we get Max’s behaviour under control so that everyone can be happy? We go back to the ABC’s of behaviour therapy and remember that there is a function to every behaviour.

What is Max getting out of:
  • Wandering around the room aimlessly?
  • Climbing?
  • Refusing to go to the bathroom?
  • Screaming when he doesn’t want to do something?
  • Throwing?
  • Biting?

As the person who knows Max best, I’d say that:
  1. We have rocked his universe by pulling him out of daycare where he was comfortable and knew the score and put him in a brand new environment where everything is new and unfamiliar.
  2. This environment is much bigger, has a lot more children, and 4 new teachers. He literally does not know what do with himself. From a sensory perspective, the room is too big, and he is having trouble figuring out how he fits into it. So he wanders.
  3. He doesn’t know the adults in the room and what their boundaries are. So he tests by doing things that he knows will get a reaction. Every time you tell him “no” or “don’t do xyz” or try to block him he makes a mental note that he should do that again! The reaction is key. If you only react when he is doing something you don’t like, that is what he remembers. It’s so hard to give proactive positive reinforcement instead of reactionary negative reinforcement. But he doesn’t understand the difference between someone being super happy and excited vs. someone being frustrated and super pissed off. They are both big reactions = thumbs up in Max’s books.
  4. He is refusing to go to the bathroom because it is the one thing he feels like he can control in his little world. Also, he has never peed on this particular toilet. It’s different. I get that.
  5. Screaming/throwing/biting – are all a surefire way to tell you that he is not happy.
In a funny way, Max is really the only one successfully communicating in this situation.

In the end, we agreed that we need some tools to motivate Max. We need to provide him with visuals so that he knows what is coming up next. We need to create a space for him where he can go to feel safe and secure. We need to address his sensory issues with the room because if he is feeling out of sorts, it doesn’t matter what we do, it won’t work.

For my part, I am putting together a bin of toys Max likes that he can keep at school to use as motivators. As we speak, my father-in-law is going to Ikea to get him the chair he loved at his last daycare to sit in where he can rock safely. Tomorrow I will bring all of this and his weighted blanket, and headphones and a discman with music he likes. I’m also going to start sending a flipcam with him every day so that they can record behaviours for me to see so I can give them suggestions on how to manage them. I’m bending over backwards to play ball because I need to them to know that my son is worth it. He is amazing. He is probably way smarter than any of the other kids in his class. And while he may not know how to behave right now, with our help, he will figure it out and then he will be the best behaved child in the class, bar none. But we’re not there yet. They don’t love him yet. So my heart breaks a bit every day when I drop him off, praying that today will be the day that things click for him. And then maybe he will start to grow on them.

I just need them to hang in there with me and Max while we get him settled. He is SO worth it.


  1. Thanks Heather :-)

    I was debating going back to bed, but I decided that today really couldn't get much harder. And then I thought now I've gone and jinxed it, because today can totally get harder, so maybe I really should go hide in bed. But there's always tomorrow...

  2. Anonymous2:09 p.m.

    He is SO worth it Kat, hang in there Hon...this is an 'ugly" battle.
    Your right with "Love" he will make it...they (panel of so called educational expertise) just better smarten up...frig, a little hug goes a long way for our kids it's too bad some whack job over the years had to ruin this for everyone else.

    I'm feeling your pain and living your heartache,



  3. Thanks Tag. I think everyone there wants to help Max, but it seems like this is unchartered territory for them? We all just need to pull together to make it a successful experience for Max (but it will take some time and patience as you are well aware).

  4. Caroline4:16 p.m.

    Oh, man, it's a brutal awakening for Max, isn't it? Just when he gets a handle on the things that are expected of him, there's a Whole New Set! And None of the things that help him self-soothe and get into his happy zone! Probably a pretty brutal awakening for the teachers, too, since they apparently don't have much experience with this kind of issue. Hang in there, keep encouraging him AND the teachers, and if you need to, go to bed with alcohol every single night! Cuz this is WORK, baby! But, you know, he can do this, with help, and he needs to learn how, and one way or another, you and the rest of the helpers will find a way. Rem ember the word "ACCOMMODATE" It is a very important word to keep using, because it reminds everyone that this is not Max being bad, it is Max learning a new place, and you want them to remember that. XOXO <3 Hang in there, it'll get better

  5. Oh yes, key words include...

    team max!

  6. The world needs more moms like you.

  7. Awh Sara, thanks. We should meet for a beverage at Blissdom!

  8. Max and my Ben are having identical reactions to the JK experience! Raffi tunes on an MP3 player has helped Ben a lot. He is in a class of 22. The size and the noise has been overwhelming for him.

    Hang in there! You are doing everything right and you are a wonderful Mom!

  9. Anonymous10:33 p.m.

    and what Max's mom (my baby) needs is all our love and support, plus multiple hugs....glad to see the love flowing in here! You are the best, sweetie!