Sunday, April 1, 2012

It's unattractive, but I'm going there...

I can't remember who it was, but some very clever autism blogger once said, 'When certain people say, "I don't know how you do it", in reference to parenting a child with a disability, you know what they are saying inside their head is, "Man, I'm glad that's not me."'

It's almost impossible to say the 'right' thing to me in relation to autism. I'm not sure I've ever heard anything (especially anything from folk who do not have a child with a disability) and thought, 'Wow, I agree with that.'

I am a boiling pot of 'no', in relation this disorder. Especially in April, and especially when new diagnosis rates for the USA are released, and there's been a huge increase. Again.

I'm like a hungry toddler.

No, I don't agree it's absolutely caused by this or that or the next thing.
No, I don't think it's just quirky, a little accelerated.
No, I don't think it's the price we pay for our sins (don't get me started on that one...)
No, No, No.
Stamping my feet.

Here are the yeses. Let me make these clear. They are easy.

Yes, I love my son.
Yes, I think the world should be full of diversity.
Yes, I think people who are autistic should be here, supported, celebrated, well treated.
Yes, I have met some outstanding people on this journey.
Yes, my life is enriched by it, them, the experience.
Yes, I'm making lemonade, omelettes and all sorts of circumstantial foodstuffs that are magical and wonderful.

And here comes the but. Actually a few buts. (I so want to write 'butts').

But... I'm being honest here. I'm not blaming. I'm not trying to offend anyone. I'm just giving voice to feelings I mostly don't share (probably for good reason). You can think what you want. I do not believe my feelings negate the reality or validity of anyone else's.

But... I'm saying this today because I'm disquieted by the feeling that I'm expected to celebrate something that (as a friend said today) makes my kid struggle with everyday experiences. And we are on the lucky end... the challenges that many other ASD kids live with, would fell all the dudes in the Trojan Horse, all at once.

But... I am not grateful that having autism in our lives has meant my parenting journey doesn't often resemble the one I thought I'd be taking, or the one I see others on. In fact, I am borderline angry. Give me enough wine, and life induced stress, and I am downright morose.

But... We don't seem to do much acknowledging that the silver lining isn't always visible. In autism world, we say these things quietly to each other, and I can't imagine a better time than autism awareness day to say them out loud.

Here goes.

 - I feel tricked. I look at pictures of Billy as a tiny baby, bright faced and full of wonder. I look at my face next to his, basking in the potential of the life we were about to share. Flash forward to now, and I remember logging each new worry like an entry in a Visitors Book. Only these visitors didn't sign out.

 - I feel betrayed by all the people who told me not to worry. I want to get in a time machine and go back and give them t-shirts to wear. The shirts would say, I was right. You were wrong. Don't say what you said to me to anyone else. Instead please say, I hear you. Google autism. And have a bottle of red handy.

 - I feel so tired thinking about doctors and nurses and teachers whose knowledge base is miniscule compared to mine,  and whose directions I am duty-bound to follow. I'm so tired that I could bottle my sweat, sell it and solve the world's insomnia issues forever.

 - I feel sad that a fair percentage of the joy of motherhood is accompanied by klingons of fear and judgement and frantic, compensatory thinking.

 - I feel disappointed that the trivialities of parenthood - birthday parties and sports and sleepovers and BFFs have been lifted out of easy reach. Also, I feel a bit miffed that popular cultural representations of parenting, family, childhood, education rarely reflect our experiences and so are less attractive. Those of you who know me IRL, will understand how this bites. Popular culture was my BFF.

 - I feel devastated that the option of grandchildren is pretty much gone, as is the rational thought of another child (should I choose to focus on the now, and not the impossible-to-predict future... another favourite piece of advice from others)

Most of all, I feel powerless in the face of autism in 2012.

We live in a world where people, for reasons I do not understand, tell me to minimise my concerns. On all levels. Every day. Maybe they think they are protecting my mental health (let me be clear - they are not). Maybe they are right and I am wrong (if that were true, my mental health would be even less at risk). Maybe they think it's all too hard (lord knows, I do).

It does not feel good that more and more kids every day are being diagnosed with autism.
It does not feel good to be told to be quiet and acquiesce in the face of a diagnosis.
It does not feel good to not know what to do to keep your child healthy, calm or functioning.

The lack of credible guidance doesn't make me do a happy dance, either.

I had a baby. We had a baby. One baby only. We made the same choice that the other 87 families made, and we got the 88th position bonus. That's the only difference in our parenting journey, at the business end.

It's OK, to me, that people are glad they are not in the same position we are. I am here, and so it is. I do not lament that it's me and not someone else. Nor do I think I am 'special' and so chosen for this task by some godly recruitment company.

The reality, in my mind, is that we are all in the same position. It is impossible, in my mind, to be living on the planet together and not share responsibility for the state of said planet and its inhabitants. We are all responsible, and therefore, involved.

It's just that on days like today, I do not feel like celebrating.


Anonymous said...

I belive you to be a very strong person and thank you for coming forward and saying what most people are affraid of saying. My cousin is in the same shoe's as many people who are in your posion and as i go home and worry about her and her three children ( two of wich suffer with autism). It does not make you a bad pesron to wish you can take it all back and make your child like every mothers dream. It just makes you a mum who would love the best for your child. i seethe way people treat my cousent and her kids simply becuase they don't understand. so again i thank you for speaking out about thyis and making what is a everyday experience for you a reality.

Madmother said...

It is bloody hard, but sadly our worry is for our youngest, not our oldest on the spectrum.

Which is what I blogged about for World Autism Awareness Day.

I must admit, I did not consider it a celebration, more of an eye-opener for those who do not get it.

Di said...

Oh Valerie, your first post to make me cry; and believe me I don't cry easy any more. My heart breaks for all those youngsters with autism, who are not coping in the world they occupy. My heart breaks for all the parents who see their children suffer. My heart breaks for all of us who do our damn-est (sp?)to create awareness, not because in our heart of hearts we want to BUT BECAUSE we need to make the world a more accepting place for our children, who will one day be adults.

jazzygal said...

I get a sense that writing this piece has been cathartic for you and i really hope that's true. You have a lot of important and very valid view points to share and why shouldn't you? Very good piece and very good points.

I too would like to say the same thing to people who told me not to worry! I am SO glad I didn't follow their advice.

xx Jazzy