Thursday, April 19, 2012

Chewing gum and imaginary friends...

It's been a while between posts, mainly because we have been ramping up to (and recovering from) an MRI for Billy. It's over, it's all good (screaming babies, long waits and a bit of spectacular vomit notwithstanding) and we've got a few more procedures to go before we have a neuro follow up to find out the results.

In the other times, we've been high and we've been low, as befits the rollercoaster life.

Very briefly, the first low involved Billy being rejected for an anxiety course. We paid people $155 to be told they could not meet his needs. I'm a bit miffed for a number of reasons, but really they're all superficial. The $$$ sting the most, though the fact that the course he was being assessed for was an autism specific adaptation of a Cool Kids CBT Program sucks too. But, whatever... we'll handle it.

The highs have involved kiddie nirvana - school holidays. Sleeping in, catching up with friends and making stuff. Billy has become very, very big on making stuff - playdough creatures, lego, puppets. He's got all of us finagled into the production line, and it all has a special theme.

TV commercials.

Seriously, we could hire this kid out to market research companies. There is no product-related rhyme or reason to his commercial loves. They range from cars to mobile phones to chewing gum to cleaning chemicals. He recognises some logos from kilometres away, and has a semiotic decoding skills I could have used in first year university.

Right now, we are deep in the Extra Chewing Gum 2012 Food Creatures campaign. Really deep.

We have drawn food creatures, made food creatures out of every perceivable medium, acted out the food creatures adventures, scripted new campaigns and shot out own commercials (with Billy directing and providing voice over. Because Billy has a photographic auditory memory and YouTube is YouTube, we have also mastered the art of re-enacting the advertisements in Finnish, Spanish and French.

I am enjoying this one slightly more than the Optus Animal ads, the Save Louie the Fly campaign or the McDonalds burger choices obsession.

We could put a lid on his TV commercial love, for sure, and there will come a time when we work gently towards that. But, for now, on holidays, it is all joy. His joy. Secretly we're not having a bad time, making stuff with plasticine and playing Director of Photography (when we are allowed).

He is happy, we are happy and even though it's not what the other eight year olds are doing, we don't really care. Given the fact that we work in TV, we're figuring he will gather some useful skills as well as have a hell of a good time. He is who he is, and we love who he is. This is our version of standing on the soccer field sidelines, yelling at the ref.

Which leads me back down to another low. Are you feeling the rollercoaster action today?

I have been a part of an internet group for most of the time I have been in autism world. They are a stunningly strong willed, diverse, vital group of smart women. They were the inspiration for and the corporate knowledge of The Autism Experience, and I would be lost without them. This week, a discussion about neurodiversity drove a long term member from the group.

My views were a large part of her decision to leave the group, and I am far from proud of that. I hate conflict with a passion, but not as much as I hate the divisions ripping autism world apart. It's feeling more and more every day like as autism parents we have two choices - you are with us or agin us. The 'us' changes, depending on your views on things like vaccines, the environment, therapy and neurodiversity.

This feels like smart political maneuvering, but poor practical behaviour.

I don't know whether my child was 'born with it'. I don't even know what 'it' is. I'm looking and looking and reading every damn thing I can, and as soon as I think 'yeah, that's it' some other study comes out and I'm in factual purgatory again. I don't know what my son will be capable of when he is an adult. I don't know from one day to the next whether he will be well or not. I have one doctor saying, 'it's the hand that God dealt him' and another saying 'let's try this trial of unconventional medicine'. I've got a kid who can spell 'discombobulated' but can't work out that 15 is less than 150.

I'm not able to sign up to one of the factions, when I've got zip-zero surety of what's going on, what's causing it, what could help it and whether I'm chasing rainbows or not. It is not helpful being told I have to drink the Kool-Aid, or risk being alienated by the Mean Girls.

In the day to day challenges of dealing with our kids, and the gripping social need for the autism community to advocate publicly, I think we have genuinely lost the line between reality and political rhetoric. As a community, we have factionalised. We have organised. We have sloganised (clearly, I do not work in advertising).

This is brilliant for the passionate folk who are at the forefront, lobbying government, sharing their knowledge, selling their books. But for the majority of parents who are dealing with their tweens unfortunate pooping issues, their kids' suicide attempts and their schools' lack of commitment to disability law, the slogans don't always match up.

I don't know much, but I do know this.

Autism does not make me less of a parent to my child.

I will not be told that my view as a parent is null and void because I am not autistic. I know him, deeply, and autism does not invalidate that knowledge. Many people with autism may bristle at the word 'disability' and its connotations of 'less than  able'. I embrace the word disability, for one reason only. It brings with it, an acknowledgement of my son's needs in broader society. It says, out loud, that he has special needs, that he is unique, that he cannot experience the world equitably without people shifting their focus and changing their behaviour.

He is not to be infantilised, not to be pitied, but does need to be respected and actively accommodated. Respect is not lip service. Acceptance is not just a word. Awareness is not just about t-shirts and coloured lights.

My son needs people to be quieter. He needs them to speak slower. He needs visual reinforcement to understand what is being said. He needs to be given space - actual physical space, and time. He needs people to listen to him carefully, and to learn to decode his behaviour effectively.

None of these things can happen without explicit discussion of what we know of him, and the conditions he lives with. No amount of 'different, not less' (as much as I love the meaning of that phrase) is going to help him if he is lost on the street. It's not going to stop a bully from tripping him up for being a freak. It's not going to help him sort the coins in his pocket into the right amount for a bottle of water at the shop.

For that, right now at eight years old, he needs us. And we will stand beside him as long as it is necessary. If I can work out a way to unnaturally lengthen my life, I will, and it's not because I am a control freak. It's because I am a mother.

I love the impact autistic people have in society. I have learned a huge amount from blogs and books and conference presentations, delivered by autistic people, in autistic voices. I wish nothing more than that my son's voice could contribute to that impact. Right now, though, he is sick and his voice is not heard. If his treatment so far at the hands of at least one educational institution is anything to go by, we are a long way from his voice being heard.

The idea that my support and love is somehow degrading my son's chances to contribute to the world, because I am not autistic, is insane to me. As an NT mother, I do not hate my autistic child even a little bit. I do hate the struggles that autism and its co-morbid health conditions (or 'unlucky strikes' as some doctors like to call them) brings to his existence. It is not all cool inventions and excellent moody photographs of trains, as much as we all wish it was. The world has changed, autism has changed. The evidence of that lies in the bewilderment with with we are viewed by the medical fraternity.

Acknowledging the difficulties of raising a child with autism may be inadvertently offensive to people who have the capacity to be offended by such things, and for any offense, I apologise wholeheartedly. But for those parents who share the journey with us, and for those legions to come behind us, those acknowledgements are (unfortunately) deeply necessary.

I'm not suggesting we advocate the driving of cars into walls, not by a long shot. I am suggesting we are rational in our explanations of what may, or may not be on the cards. Promising that early intervention will smooth every single ASD toddler into a pre-schooler full of quirky genius, is setting a growing generation of parents up for the worst kind of fall. In fact, it's likely to leave them with such a sense of failure and loss, that the hateful sentiments expressed in Autism Speaks 'I Am Autism' and 'Autism Every Day' could gain (not lose) traction.

As autism parents, we play the same role as any parents play in our children's lives. Autism influences that role, massively, but it does not negate it. In our lives, Billy is himself, our son, autistic, tall, funny, a lover of trains, animals and TV commercials.

We are supposedly on the 'easy' end of the spectrum. We know many, many families who are not. The idea we are degrading our children by advocating with and for them, is nonsense. When it becomes evident that a bridge has been built between Billy and the world (by him, by us, by shiny green pixies from the planet zorg), we will happily and proudly watch him walk away.

Until then (if or when he meets the height requirement for this rollercoaster ride), it's plasticine and YouTube and the occasional internet drama. For everyone.


Anna V said...

Oh good grief if I am reading this right. Jesus wept.

Someone actually said that NT parents are not good advocates? I'm NT and married to someone who is autistic. Guess who he chooses to do the advocacy and the interpretation of the NT world for himself and boys? Sure as shit ain't him.

Also our MRI vomiting experience was in peak hour traffic after he was loaded with anti nausea meds, ate something, we waited until everyone was sure it was all cool.


Madmother said...

I'm with Anna (as usual, lol).

I have actually stopped following a lady on FB, because whilst I love a lot of what she says I was sick of being told I had no idea, nor could I ever understand my son. Like hell, I understand him as every mother understands their child. We are not clones, every single one is an individual, every single child has a separate mind, experiences, thoughts, life to a parent. Not just NT versus ASD. That is just bull.

And whilst I agree with a lot of what you right, and disagree with some, it is the way you open discusion, listen, debate that keeps me here.

Anonymous said...

Um...I am sure this will be deleted before anyone reads it, but I feel like I must speak up on my own behalf.

I did not leave the group because of Valerie's views on neurodiversity, and no one involved in the discussion made any such claim that NT moms cannot advocate for their kids. Heck, I am NT, so I certainly did not claim that I cannot advocate for my own kids.

What Valerie has conveniently left off of her post is the fact that I left the group because she referred to neurodiversity as "nonsense." I am not making it up. She said "nonsense." When I objected to her use of a pejorative term to describe my belief system, she persisted in calling it nonsense.

That is why I left. Not because of someone's opinion about my beliefs. But because of Valerie's blatant disrespect and insistence in using phrases like "the highest of the high functioning" and "barely impaired" as if to imply that people who fit into those categories are somehow less important in the autism community or less deserving of a voice than an NT parent. My "barely impaired" children suffer every day at the hands of the ignorant masses who insist that they conform to "typical" ways of being, despite the fact that there is nothing wrong with them except they are wired to be "different." They, and others like them, deserve just as much voice as anyone else.

So, carry on, Valerie. Tell the story the way you want to tell it. But at night when you sit and think about your day, I want you to remember that your increasing anger, bitterness and venom was misdirected. I was never your enemy. I was someone who respected you and valued your friendship. You disrespected me. Sleep on that.

Anonymous said...

Val refers to it as 'insane' (to HER) in this blog post. Doesn't seem like she is hiding how she feels about the political movement of neurodiversity. As a member of the group, I am surprised. You said you had been thinking about leaving for a while. That it wasn't the right fit anymore. Now it was all one person's use of the word "nonsense"? You had a fight with Val and left the whole group? I'm sorry you feel she disrespected you with her choice of words. I feel you disrespected our community by leaving over it.