Sunday, February 27, 2011

Reasons to be cheerful...

There's been a bunch of stuff going on around here that has made me sad. So today, I thought I'd focus on the positive.

Positive Things About Living With Autism by Valerie (42 and a half years old)

1. Grocery shopping is relatively simple.
There are no real mysteries for me when I shop. I know what I need to buy to keep the boy fed. I know what I need to try to push the boundaries a bit. I know what to stand in front of and go, 'What child eats chickpeas anyway???' (that would be the chickpeas). I read the Sunday papers and I see the recipes for 'Kids Lunchbox Lovelies' featuring avocado, tuna, coriander and lentil wraps and I think... thanks for that.

Let's be clear here. Autism eating, for the uninitiated, is a curious mix of the sensory, the familiar, the thank-god-it's-nutritious and the very well advertised. As far as I can work it out, it's about what Billy believes will not kill him. It's not a matter of us sitting around as parents and thinking, 'Phew, all he wants is McDonald's Nuggets, that makes things easy!' Not by a long shot. Our cupboards, like most autism family cupboards, are full of 'ba-bow' foods. Things we tried on the basis that they were nutritious, other kids ate them and they were related by colour/texture/smell to something our child actually eats. Our compost is like a Whole Foods catalogue.

All is not lost, though. Because one of the brilliant things about autism is just when you have given up, your child will shock the life out of you by picking up that coriander and spatchcock sushi roll and eat it. Looking at you all the time like they were born with a sprig of coriander in their tiny little hand. Also, maturity brings the helpful concept of bribery and corruption. In our house, we are now able to say, 'Eat two pieces of pear, and you can play The Simpson's Game. No pear. No Simpsons.' Thankfully his receptive language wins over his gag reflex. And sometimes, you can sneak more fruit in using advanced mathematics (hang on... if I take one piece of pear away from two pieces of pear, how many are left? One. Well, you agreed to eat two, so here's two. Bang! Eat these two, then The Simpsons. Confused? Me too. But he ate more than two pieces of pear.)

A message of hope? You may have child like my wonderful Aspie nephew who is a sensory eater. His calming food of choice? Crunchy raw vegies. Seriously.

2. Entertainment is not a complex prospect
Let me qualify this by saying, it's not that I believe autistic children are not capable of involving themselves with complex forms of entertainment. Far from it. The positive here is that your child is likely to know exactly what he/she wants to do. Autism makes it slightly easier for the parents, because whatever the love, it's likely to be a deep and specific love.

For us, the first love was Thomas. The Tank Engine, not the saint or Edison. It didn't take long to work out that no amount of colourful building toys or Wiggles DVDs were going to distract him from his little blue engine... or the green one, the red ones or any of the others. So, we bit the bullet and used the engines for good. Thomas zoomed in front of the OT's scooter board, annoyingly demanding a bunch of crossing the line action as he went. Percy was covered in shaving cream more times than a little engine should be, in an attempt to break down sensory barriers. Poor Gordon and Henry spent a lot of time hidden in the sandpit/rice box/ball pit, needing repeated rescue missions.

It doesn't have to be branded, licensed toy hell either. Many friends of mine have children who love rocks, string or science experiments. Again, from an NT point of view, it's easy to think we should be teaching our kids to love a diversity of activities. And to that, we autism parents say, 'Would you like to be the one who teaches my child that? It would be awesome if you could take that one on for me.' And while you do, I might write a PhD, build a house, split the atom or have a Sleeping Beauty style sleep. Because that's how long it will take.

Embrace the beast, I say. You may be slightly bored, but your child will move forward faster.

3. You are among friends
Autism does not discriminate. It hits all sorts of families. Whether you meet those families in real life or online (or both), it will not take long for you to understand that their support and understanding can change your life. Reach out. Someone will grab your hand. I promise.

That whole 'a problem shared is a problem solved' thing is not as old fashioned and granny-fied as it sounds. I never thought I would spend my time typing my thoughts about poo or ways to put t-shirts on. But I do, and when I do, I learn more about how to do it myself. In a community of solution seekers, we are all better off. Among friends who have faced similar challenges, we can empathise and understand in a way that the rest of the world cannot. It's not so much about having degrees (though sometimes they help), it's about the wisdom and compassion that comes from having your heart ripped open and left open.

If anything, since autism came into our lives, I find myself looking at people who have not faced something as confronting as disability in their children with a form of pity. It's a profound experience that lifts you (if you allow it to) out of the mundane and into a constant state of transformation. It's an active kind of life, for sure. And though I would not wake up screaming for it in the night, I welcome it for the positives it brings.

There we go. Happy things. Now, if you will excuse me, I must return to the dark side. I'm trying to work out what Thomas the Tank Engine can teach me about legal campaigns and legislative reform.


Dana Meijler said...

OK, you have officially made me cry! What a beautiful post and all so true. I am linking it to FB.

Thanks for posting and all the best on the dark side xx, come up for air when you are ready. We'll be here!

Mich9 said...

Love the post, Valerie. So simple. :)

carriemumof2withasd said...

Much love Val :) I love to read your blog it gives me a little pick me up almost every time :)

ps MY kids eat chickpeas :D

Jo said...

What a beautiful post! xx