Wednesday, March 28, 2012

Unsolicited advice...

Billy and I spent today doing a favour for his psychologist. We sat in front of a team of people being trained (by Billy's psych) and went through the ADI-R, the parent component of the ADOS - the most popular diagnostic tool used here.

We've done it before, both of us (Billy generally does the ADOS, though his version of the ADI-R would be instructive), and each time it's interesting.

For me, it brings me right back to Billy's first diagnosis... and it reminds me how green we were, how vulnerable we were, how driven by a potent combination of love and concern we were.

So, with April, Autism Awareness Month, looming, I thought it was time for me to give myself some advice. In the spirit of the counseling I've been going through, I will speak directly to my self five years ago, and if the things I say have relevance to anyone else, then so be it.

1. Do not listen to anyone who says 'wait and see'
Those people are trying to save themselves or someone else time and money. They do not have your childs' best interests at heart even if they think they do. I'm not saying they are evil, just that they are not you.
The longer you wait, the more you will see.
The less time you wait, the more time you will have taking the autism bull by the horns and wrestling it. And no, a lack of desire to wrestle bull is not an asset in this game. You will be doing it for a long time, the earlier you start, the more familiar you will become with the horns and the smelly hair.

2. Do not normalise what you know is not 'normal'.
Insane competence with technology when you are two and not talking is a great thing.
It 's not, however, a sign that your child is not autistic. It is a giant, flapping, squawking, perseverating red flag. Spending trips to the park squinting sideways at fence palings, isn't eccentric. Choosing one toy to the absolute passionate exclusion of all others, is not being a good customer. Do I need to keep going, slightly younger, you?

3. Do not reject therapies or interventions based on your reaction to the person offering them.
You are creeped out by random taxi drivers or shop attendants. You have been creeped out by some fruit.
Get over yourself and listen politely to everyone. It's the right thing to do, and you should know by now that slightly creepy people still may have something to offer. You may miss out on some important information if you give in to your natural tendency to assume odd people are cyborgs. Idiot.

4. Do not listen to everyone.
Seems like I am contradicting myself, doesn't it? I promise I'm not. Stick with me, even if you think I'm being a creepy cyborg.
Autism world is factional. More than the Australian Labor Party. Believe this. Being an autism parent is like being hassled by telemarketers some days. You get told this WILL work, that IS nonsense, these people ARE criminals, this therapy IS dog training, those supplements ARE useless, that organisation IS corrupt. That's a LOT OF CRAP. Believe what your gut says to believe. It's what got you this far.
There is no absolute truth, there are a lot of informed opinions. Take it all in, and keep breathing. Acknowledge that people's passionate advocacy comes from their lived experience and vested interests. These are wonderful things, but they are not gospel. Or maybe they are gospel (as I understand it) - ie. stories designed to convey a message. That's the best I can offer you. Reject nothing, accept nothing. Join the community, don't be intimidated by the dogma.

4.5 Do not reject technology because people in conservative clothing say autism is caused by watching too much YouTube or TV.
That is insane and ridiculous and you are stupid for even listening.
In fact, you will learn technology is your lifelong, unconditional friend and, generally speaking, people in conservative clothing are not. Be nice to them, but sing a happy song in your head while they are talking.

5. Do believe in the power of love.
Billy's favourite version of this song comes from a YouTube Jurassic Park mash up, so I have heard it a lot. That may be why I'm saying it, but I think there's more to it.
Love is what will carry you over shark infested swamps and through endless therapy session. Love is what will get you through watching your child struggle, and feeling like your child is hurting you (he isn't, FWIW, at least not consciously). Love is what will keep your head above water, and your underpants the right way round (I warn you some days, you will not remember which way is up). And you are going to need the power of love for you to accept what's coming next.

6. Do acknowledge it might not go away.
You do not want to accept this one, but believe me, accepting it will save you. Not accepting it will eat you alive.
You may be one of the few families who grow past the diagnosis. You may be one of the families who benefit hugely from biomed and therapy. You may be blessed by the giant flying donkey of truth who magically sucks the autism away. All these things are possible. What is probably, statistically (at least for now, and here's hoping it will change significantly really soon) probable, is that the autism will still be there (maybe looking slightly different) in the future. Have faith in therapy and interventions, but do not be fooled into thinking you (or god forbid, your child) is a failure if the autism doesn't magically disappear. A quick face-palm from six years in the future, he's awesome, and he's still autistic. I do not want to stop you from doing the very best you can, and you will come to believe that 'recovery' is possible, just not probable. Shoot for the stars and know that the stratosphere isn't a bad place either.

7. Do purchase some boxing gloves (or your fighting equipment of choice)
The world will not bow to you or your child. It is not in the interests of many people to prioritise the well being of your child. This will surprise you, a lot. So... do not be blindsided by it. Come out swinging. Well, maybe not swinging, but being massively articulate and well-read. Keep yourself credible, do not let your standards slip, keep your friends close, and your enemies much much much closer. Do not let people off the hook. Document everything. Don't ever accept statements like 'that's just the way it is' or 'that's not the way we do it'. Know that having a child with a disability automatically makes you an advocate. That's just the way it is. Oh... hang on...

8. Do back yourself.
You will not always be right, so you may as well get your motivation straight. You are here, right now, for your child. You will be attached to him for a long time, longer than you anticipated. Don't try to hide him or his disability. Do try to understand him and his disability as much as you can. You will like yourself a lot more in the future if you do. To be honest, you are going to need to get used to the acceptance, because there's a better than good chance that he will stick out more, not less as time goes on. You will need all your reserves to resist the desire to slap down giggling kids and gaping general public.

9. And lastly...
Autism is as varied as the flowers in a really awesome flower shop. Stand proud among the colours, but do not use the difference in petal shape, height or perfume as a reason to deny the awesomeness of your child.

He is what and who he is, and being like or unlike his ASD peers, is as irrelevant as his likeness to his NT peers. Don't rely on nonsense arguments about how he's not like other ASD kids, as proof that he will be 'OK'. He is OK. He is also autistic. Prepare yourself for a mosaic of chronic medical conditions (or not), obvious socially inconvenient habits (or not), massive changes to the way you live your life (or not).

Know that you will do the best you possibly can every day. It might not be perfect or what you planned, or what you want to do... but suck it up. Good days follow bad days, and vice versa. Do not cut yourself a break, but do cut yourself some slack. It's going to be a bumpy ride.

Your son is the same miracle he was when all you knew of him was a double line on a white plastic stick. He will be the best teacher you ever had. He will inspire, surprise and thrill you.

He will also make you watch more Spongebob than you ever, ever want to. Unfortunately, that will suck like nothing else. That's the bad news.


Christine said...

What can I say other than you too every word out my my mouth. Beautifully, honestly written. A perfect guide for newbies.
Well done, friend!

Wendy said...

You said it sister!

JANTaR said...

Articulate, credible, profoundly inspiring - that is you, Valerie. You are our teacher. So if Billy is your teacher, he's my teacher too. Thanks, Billy. xx

Patty O. said...

Yes to all of the above, especially getting your boxing gloves! You'll need 'em!

Great post!