Monday, March 26, 2012

max update: even with autism, the kid's got game.

Max has had an incredible week. And yes, I know he looks terribly unhappy in this photo, but it has more to do with me attempting to take his picture than anything else. This is his first day of spring hat that he made at senior kindergarten, and he wore it all morning with a big grin on his face. The moment I put my phone away the smile returned. Thanks kid.

Where to begin? Max had his first gymnastics class this past week. His therapist, Wendy, accompanied him. He blew me away with how well he did. While there was a lot going on around him, he managed to to stay focussed on what is group was doing and to also follow his coach's instructions. Wendy definitely got a workout helping him stay on task, but by the end, she was able to step back a bit as he started to fall into the routine. For the rest of the week, anytime we mentioned gymnastics Max got a huge grin on his face. I can't wait to see how he does next week!
Max and I also ate out at a restaurant for the first time. My favourite Mexican place, California Burrito, was a hit with him because he got a big bowl of chips to munch on while I ate my lunch. He did terrific and I can't wait to take him back again. Funny thing was, it was an impromptu visit. I had ordered my lunch to go, and Max decided he wanted to stay and eat his chips. So we did - and we'll continue to do so!

We're also working on teaching Max to ask questions. Instead of stating "Mommy, I want chips" I now prompt him to say "Mommy, can I have chips please?". I started this on Friday and by Saturday he had it down pat. His comprehensive language skills also continue to blow my mind (with him immediately following instructions like "Sit up straight" and "Sit on your bum").

The last thing I have to report on is Max's playground pick-up skills. Apparently, he likes to sit at the top of the big slide and wait for another child to slide down with him. But, he will only slide down with the girls - the boys are on their own. I'm told he favours a certain white-blonde haired little girl who is in his class. Kid has game and he's not even six yet.

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?

Thursday, March 08, 2012

step aboard the autism dragon boat ride.

Lately, when I'm asked "How are things going", I'm really not sure where to start. Me? Well, I'm still fighting the good fight, whatever that means and for whatever it's worth. Max? He is experiencing incredible progress in a lot of areas, but also regressing back into some behaviours that are both physically and emotionally exhausting to deal with. The typical two steps forward, one step back of autism. I was telling one of Max's  therapists that it felt like we were living on one of those big theme park dragon boat rides that swings from one side to the other, so high that it looks like the occupants might fall out when it reaches the summit but they are thrown back into their seats as the boat swings back down. The only thing I can figure is that with all of the new skills settling into Max's brain, it's causing him to need to balance things out by bringing back some of his tried and true (and irritating) coping mechanisms. So, let's start with the progress.

The good stuff is awesome. Max is surprising us almost daily. This past weekend, he found that train puzzle, which we haven't played with since November. He brought it upstairs from the basement and put it on the kitchen table. I told him the puzzle was too big to do on the table and he should do it in the hallway. He remember that the last time he did the puzzle, he did it upstairs, so that's where he went. I came up to check on him a few minutes later and he had completed it entirely on his own. Then he took it apart and put it back in the box. Also, he loves wearing hats now. We haven't been able to keep a hat on his head since the day he was born.
He and Cameron are continuing to develop a strong (and typical) sibling relationship. Last weekend they were playing tag, chasing each other through the house and giggling up a storm. If one is colouring the other wants to join in, and best of all, when I don't understand what Max wants, Cameron usually does. Last week when she was taking a bath, she asked for her "special soap from Grandma" (a heart shape soap). I had no idea that Max even knew what she was referring to, let alone what it looked like. He picked it up off the counter and tossed it in the bath for her.

Other progress? When asked what colour something is, Max is now responding with more than one colour (the dominant colour and secondary colour). He is being more specific when he wants something (like telling me "My turn, DVD all done" when he wanted me to turn a movie off so he could watch Elmo). He is also greeting more and more people unprompted and making killer eye contact. Also, he lost his first baby tooth (right on schedule!). We don't hit a lot of milestones on time, so we'll take 'em where we can get 'em.

These wins are what I cling to on nights where he screams every time Cameron coughs, slams the fridge door after every time someone opens it, whines non-stop and shouts out his favourite stim, "Mommy! What Max? Mommy! What Max?". Toileting is still hit and miss, and lately, he has been staying up until all hours of the night. So, how are things going? Depends which side of the boat you're on. I think the positive developments win out, but I wouldn't mind a break from the extreme swings. I'm more of a ferris wheel kind of girl.