Sunday, December 06, 2009

1 Year.

It has been one year since Max was officially diagnosed with Autism. A year of progress. A year of pain. A year of hope. A year of grieving.

Max has experienced tremendous growth over the past 12 months. When he started therapy he could not transition from the waiting room to the therapy room without having a complete meltdown. The reports from each session would include "50 minutes of behaviour" (meaning he was unable to complete tasks because he was screaming or throwing a tantrum). It's rare to see those types of notes in his reports these days. More often than not I get reports that he had a good, if not great session. In January he had no words. Now he greets people unprompted, tells us what he wants, and has mastered "no" with gusto. His therapists take such joy in reporting his progress, celebrating his wins with us.

The progress comes slowly. Most days it feels like two steps forward, one step back. We take tremendous pride in the wins and try not to feel devastated when Max's behaviour slides. It's a grind every day and it takes its toll on me, and on Scott. We try to have a sense of humour. It's dark and rude and sarcastic, and you probably wouldn't understand it if you overheard us. But it helps and it keeps us sane. We are burdened and blessed, tested and enlightened. I would never ask to be on this journey or wish it on anyone, but I will say I have met the most amazing people because of Autism, and my life is richer for it.

Here's to next year little boy. I look forward to our wins.

Tuesday, December 01, 2009

Sink or Swim.

Every day, I get to make a choice. Do I sink or do I swim? Most days, it would be easy to say "I can't do this, this is too hard, I'm done". But really, that isn't a choice and who am I kidding? Every day I get up, push my heavy heart aside and look in the mirror at the tired and worn down version of myself that I never envisioned when I told Scott "I want a baby". I look in the mirror and triple-dog-dare myself to muster up the strength to battle through another day. To give Max what he needs, make sure Cameron gets the attention she deserves (and demands!) and that I leave enough left over for Scott (or at least try). I go to work and I do my best to do a good job. Most days I feel like I fall short on all fronts. I look at Max as he gets bigger and harder to manage and I worry. He is freakishly strong. We are now at a point where we can't physically force him to do anything he doesn't want to do. I'm only 5'4 - he'll tower over me in the not so distant future. What am I supposed to do then?

I've had to make some difficult decisions around Max over the past few weeks. I decided to remove him from his daycare (the one I worked so hard with to transition him to the preschool room). After spending a lot of money attempting to train their staff and get him into a consistent routine, it was all for naught. Their staff turnover made it impossible for Max to pair with his teachers and their programming just wasn't able to support a child with special needs. I feel like I failed. I wanted so badly for him to be in an environment where he would get exposed to "normal" kids. But after he got sent home with feces on his shirt and was allowed to eat mashed potatoes with his hands (he knows how to eat with a spoon and they didn't even give him one), I knew that this daycare was doing more harm than good and I needed to find something else for him.

That something else is to be determined. For now we are increasing his therapy hours, leaning on our respite worker, and calling in Super Bumpa and No Nonsense Nana. As I got ready to leave for work this morning, I looked out the backdoor at him, running around the backyard happily, his respite worker Kailee playing with him, and I felt so so sad. I want him to get to play with other kids. I want him to want to play with other kids. He isn't there yet. So I swim on. Of course I do.