Tuesday, March 20, 2012

mothering a child with autism: the loneliest job in the world.

This past week there was an article in the Huffington Post about special needs parenting that truly hit home. Reading it, I thought to myself "Wow, I'm not the only one who feels all these things". Lately my days are more down than up, I'm a ball of stress. My stomach hurts, my skin is breaking out and the only sleep I get is the well medicated kind. Add to that, I seem to be spending most of my days on the phone, trying to explain to yet another bureaucrat that I understood their need to maintain numbers and limits and respect geographical boundaries, but they need to come to terms with the fact that kids with special needs don't fit into this jello mould they like to pour everyone into. And that's okay - the rules are there so that exceptions can be made to support the children who need special consideration. To which I'm politely told "no, we will not be making room for Max" (at the school he has attended for the past two years).

I feel myself starting to become unhinged. Because, as Max's main advocate and support, if I can't fix these relatively small problems for him, what good am I? And on top of that, if I don't do it, who is going to fight this hard for him? Clearly I can't trust others to prioritize his needs or even, quite frankly, do the right thing. There is so little I can control on this autism journey. When the few things I should be able to navigate go sideways I feel like I'm failing him. I want so badly for him to have every opportunity available to him to prosper and grow. When people say "no" to Max, I feel like I haven't done a good enough job telling them about Max. I haven't helped them fall in love with him. Ultimately it's their loss, right?


  1. The hardest part about being both Mom and advocate is never feeling like we have done enough. Trust me when I say you have and will continue to do so. You are amazing!

  2. Let me guess, it's not your home school, so the principal doesn't need to take Max? :(

  3. lmao. you try being a child with autism with a mom, and try to explain to her what is going on at 3 years old and realizing that your mom is not paying attention, and isn't listening. It is lonely. And 47 years later I remember all of it. I told them explicitly what was going on and they didn't listen. Listen and listen and listen. I'd be happy to suggest techniques. jnolan@ryerson.ca

  4. Autistic Wisdom - yep.

    Jason - spending time with Max isn't what is lonely, not at all. What is lonely is being surrounded by people who don't understand how valuable and incredible Max is, and why they should want to be a part of his success story.

  5. Anonymous7:26 p.m.

    You are not failing him, it is the system! You are doing everything in
    your power for him yet getting doors slammed in your face! You have no control over that, just know that you have done the best that you possibly can! I am sure the Max knows that! Autism is not important to anyone unless it has happened to their family! That is what I have realized! Julia J

  6. I know ErinoakKids can help with school issues. Dr. Tsatmari at McMaster Hospital is also great for help. I know that he has called school and had meetings with school & family to persuade school. Joe at ErinoakKids also attend meetings with school. As a matter of fact, he is going to meet with me to decide what to put on IPRC.

    We are lucky that our school is very supportive. The teacher and EA actually schedule other children to play with my son. My neighbor has been advocating. There are monthly meetups. You can check this out:

  7. Girl. I know how you feel. Everytime my heads out of water for a few breaths I try not to look too far ahead, because its all doom and gloom. You kinda just hang on to the awesome things your kid does, tiny ones, here and there, and stay afloat. In the end all the +ve energy comes from your own child and watching him kick the crap out of his disability.

  8. Anonymous9:27 a.m.

    It is their loss. Max is beautiful and awesome. As are you. xoxox.