Thursday, March 1, 2012

Perhaps I am a hat?

This week, I have begun talking to a counsellor.

While we are in a pretty good place, despite Billy's new health concerns, I am carrying around a bunch of unproductive feelings - wishing specific people's heads would spontaneously catch fire, wondering why doctors happily default to God's poker playing skills during medical consultations, hoping we will have one day without Spongebob in some form... that kind of thing...

Knowing that they will likely remain unrequited, I am keen to send those feelings to some faraway place and so, I have let the talk-fest begin.

In preparation for this counsellor, who seems like a smart person (and who shares the experience of having a child with autism), I have been thinking about the way autism has changed me, the way I behave and how I see the world.

1. Autism has made me weep like a baby.
Every time I see a film about autism, like this beautiful one from the BBC, a stunning achievement by an autistic person or a story about yet another near or actual tragedy, my eyes, chest and brain dissolve. I don't want to cry as much as I do. In fact, I use the tears as a kind of barometer - fewer tears = fewer hopes for spontaneous combustion incidents, generally. I definitely didn't cry this much pre-diagnosis.

If I had a tip for new players, it would be to try to manage the tears, in some non-damaging manner. People who I would not expect to be shocked by parental, child related tears (doctors, teachers, windscreen cleaners at intersections) are indeed shocked. OK, the dude at the intersection is better than the others. I should give credit where credit is due.

2. Autism has made me fight like a lion.
It is not hard to make me angry these days. There are trigger words, in fact. 'Evidence' is one of them. I used to love evidence. It appeared in episodes of Law & Order, and Agatha Christie books. It meant fact, reliability and that a solution was imminent.

Now 'evidence' is used as a weapon, more often than not. It is used to shut down discussion (there's no 'evidence' of that ever happening). It is used to deny standpoints (But where is the 'evidence'?). It is used as a universal truth, despite the fact that we all know 'evidence' (particularly the health related kind) is the product of intense, expensive, funded research. It is designed to validate a pre-determined point of examination. Funding for that validation rarely comes from uninvolved parties who are throwing cash around for the 'greater good' (as though that can be universally determined).

With an autism diagnosis, must come an acceptance that your family may well find themselves hanging out on the edges of the mainstream. Out here, 'evidence', in any kind of form is hard to come by and even harder to accept, because it rarely describes your experience.

When someone says 'evidence' to me now, no matter what words surround it, that old video of baby harp seals being clubbed starts playing in my head. I can barely think for the building growly rage.

'Evidence' is great stuff, but it's not universal, exclusive truth.

3. Autism has made me read like a person imprisoned for life with no TV and a great desire to avoid being frightened by the experience of being in prison.
I've always loved to read. The first book I ever recall purchasing was Milly, Molly, Mandy, bought at 6 years old at Heathrow Airport. We were en route, from Ireland to our new life in Australia, and I couldn't have dreamed of a more exciting escape from the food smells and fears of air travel in the 70s. Almost 40 years on, most of my purchases are on Kindle because we just can't keep carrying around so many boxes of so many paper books.

Oddly, the utopia that Joyce Lankester Brisley described in those books, is still what I'm seeking in all the words. Some quiet place where we can all be ourselves and eat mustard and watercress sandwiches. GFCF, of course.

There is never not a book on the go. There are always more to read. I read what piques my interest. I read what enrages my soul. I read 'evidence' and argument and counter argument. It's emotionally and physically exhausting, but it never ceases to amaze and inspire me. I am scared at the amount of times I find just what I needed to find in one of the three or four books I have on the go at once. Even more scary, sometimes it's in a trashy novel about living in Hollywood that I find solace. Rarely 'evidence', but often escape.

4. Autism has made me accept that 'right' is a matter of intention and context.
This is a tricky one. At the pointy end of our existence, I have to accept that the way I see the world is different in a quantum sense, to the way Billy (for example) sees the world. I have to accept that we all get our idea of right and wrong from our lived experience and the perceptions that grow from that experience. Ergo, I have to accept that what I believe is right, is not necessarily going to be what Billy (or anyone else) believes.

So, when there is a point of conflict, in relation to Billy, I am often left flummoxed as to how to help people understand whether anyone is 'right'. In the wake of the massive conflict that took place regarding Billy's education, over the last eighteen months, we are left languishing in 'right'-ness.

We were right, the opposing party was wrong. The law was very clear in that regard. But there is no reward for being right, and there is no consequence for being wrong. Those who did wrong, can continue on as before. Even though it was 'wrong'... or is it wrong, once Billy is taken out of the equation?

You see why I need a counsellor.

5. Autism has made me need a counsellor.
And a round of stiff drinks. All for me.


7 comments:

Madmother said...

I hear ya!

I wrote something similar, yet not nearly as articulate here:
http://theinnerechoes.blogspot.com.au/2009/11/life-with-autism.html

And what is even sadder, I now have been banned from alcohol until my liver issues are identified! Grrr.

Floortime Lite Mama said...

adore this post
this one really strikes a chord with me
"'Evidence' is great stuff, but it's not universal, exclusive truth."
Its amazing how many people will tell me that I should not do floortime because there is no evidence and ABA is the only "evidence"
or that there is no evidence on the vaccines
how about considering the point that vaccines may harm certain children
Val did you know blogger has made commenting really hard if you have to word verify
For instance the word I need to verify is "utsertalk atineyi" and its written in shaky black ink
Since I love getting comments - I am still trying hard to leave them
For this reason I am asking bloggers to enable comment moderation or get of verification all together -
Anyway jusy thought I would let you know
you rock as always

Judye Nazareth said...

Well said, Val.

Autism this week made me send my husband to the liquor store on a Tuesday night for some wine.....

Deenie said...

Hey ... If you wanna cry at a movie, watch "Like Stars On Earth". It's not about autism but it's a really good movie about a kid with a learning disability and it affects him socially as well. It takes someone very special to see past his "issue" and appreciate him for the wonderful and talented kid that he is. It hits very close to home. It does have sub titles, but so what? You get to read. :-)

Dana Meijler said...

Fabulous post, thank you.

bilmoko deals said...

Woohoo rollercoaster. Nice post. I love it. Thanks

Þorgerður said...

heads on fire, stiff drinks and counseling away unproductive feelings.

Found you when blog browsing and very glad i did.