Saturday, March 20, 2010

In case my theories turn out to be rubbish...

Dear Billy,

I'm writing this on a Sunday afternoon. You are six, and a ball of charm and enthusiasm. Summer is turning into autumn, and we're seriously hoping taking your tonsils out last year will save you from another winter of stinking respiratory infections.

I'm writing this because... as much as I believe we have made pretty good decisions about your life, it could all go tits up. I'd like you to understand where we were coming from.

If you are reading this when you are a teenager, you're probably fully up with the news flash that your mother is not like lots of other mothers. I'm not good at toeing the line. I don't take kindly to ignorant authority. I am a little odd. Not funky, trendy odd either. I always wished what is inside would translate into an easy, eclectic fashion sense, but no... I always look a bit like I borrowed my clothes from a stranger.

But... I digress.

I want to talk autism, and the choices we made for you.

I'll start by saying that I've not been trying to be deliberately perverse. I've been following my instincts. It took me a long time to accept that you were autistic, because I've never (EVER) felt any kind of 'disconnect' from you. Since you were born, and before you were born, you have seemed incredibly logical to me. It's a heartfelt logic too - one that is really hard to explain to other people. You have to know you well, to know you well... if you get my meaning.

It's just that everything you read about autism is all about the whole, 'I just couldn't reach him' and 'he didn't take any notice of what we said' and 'he'd go stiff as a board when we tried to hug him'... style of thing.

You, on the other hand, have always been like our little passenger, our buddy, our wing commander. You cuddle like a koala, and always find solace and comfort with us. You give as much as you get.

You are charming, and funny and smart. You have such a calmness about you, that when the inevitable ASD anxiety takes you over, it's quite a shock. It often seems to me, it's the rest of the world that has the problem, not you.

You are, truly, the human being I would like to be.

Even though you have this label - autism, you have something far more powerful and apparent. You have your soul. You have your spirit. You have... you. No label comes before that.

I know that autism makes things hard for you sometimes. I know the world is too loud, and kids are unpredictable and sometimes it's damned near impossible to pull out an appropriate response to the questions being fired at you.

We've tried to do what works for you, to make those challenges more manageable. That's meant Speech Therapy, Occupational Therapy (Sensory Integration), video modeling and the choice to send you to a small, compassionate, democratic school. It's also meant avoiding anything that seemed too... brutal. No ABA, no RDI, no social skills groups... I'm not slamming those things at all, they seem to do great things for people, but... they just didn't seem right for you.

I've just never seen the logic in forcing a person to change their behaviour - not in relationships, not in a work sense, and absolutely not in you.

It's not a hard and fast rule, though. Sometimes it works better to just teach you 'the way' to do something. Once you've got one way, you can use that as a safety zone and innovate from there. You are awesome at observing what other kids do, and modeling your own behaviour off them.

As I've said, I've always been a bit left of centre. Maybe I've put a little too much effort into staying 'different', defining myself as not like the others... But you have taught me a much more valuable and realistic lesson. You, and Temple Grandin...

Different, not less. It is perfectly legitimate to do things differently. You have a perfect right to do things the way they occur to you, also, you can choose to not do things. Just because the other kids are doing that thing, is not a written-in-blood reason why you must do it to.

I know you didn't choose the autism part of your being. But along with being autistic (and maybe because of it), you are clever and insightful and creative. You have focus and passion and drive.

These are gifts that have the potential to take you a long way.

You may, or may not, head in the same direction as your peers. You may, or may not, achieve the things they do. But one thing is for sure...

You will achieve things that are meaningful to you - things that make you satisfied, and passionate, things that move you.

That, in my humble opinion, is success beyond all measure.

There is nothing I look forward to more, than the opportunity to watch you thrive. I hope we continue to make decisions that help that happen.

If we don't, I ask only one thing. Remember that you are worth it... you are what made our lives, our dramas, our decisions worth it.

Before you, I was just a lot of theories, a lot of hope... and some really bad fashion choices.

I love you, buddy.

Mummy (or Mum, if you are a teenager already)


Katie said...

Val, that is amazing... I love it.

Mich9 said...

What an awesome gift to give to Billy when he's older! Your rhetoric is honest, Val. You're a great Mum! :)

Mama Deb said...

Valerie, I am so sorry that this is the first time to read your wonderful, honest blog. I need to step out of my own self-absorbed autism world a little more often!
Thanks for always being a great support. Hope I can be the same for you!

Dearna said...

Wow,Valerie you really are amazing.Billy is a very lucky little boy.

Anonymous said...

Dear Billy,
I met your mum when my daughter (Ella, now 29 years old) was your age. Yes, long time ago...Valerie was Ella's favorite companion / babysitter over number of years. Ella loved her because she was special - inventive, very smart, crazy, lots of fun...Later on Valerie kind of disappeared for a while - and reappeared recently, through you.
I met you when you were about 2 - 3 years old. I hope to see you both again when you are in Brisbane.
Love to you and those close to you Ludmila