The Times, The Blogs Are Changing…

Filed Under (Activism, Adam, Family) by Estee on 02-08-2009

What’s a life anyway? A series of decisions, forks in the road, relationships, children.  I consider that sometimes, people are afraid to make decisions and many let others make decisions for them. I do not want to live that life.  Life is that proverbial struggle, that uphill climb, like my recent bicycle ride. I wouldn’t give up then, and I don’t give up now.

Kristina Chew’s recent post, Ave Atque Vale,  reflected what I’ve been writing for nine months now but less forthrightly. She too recognizes that as Charlie grows, the need to blog and write has shifted focus to disability rights instead of vaccines, therapies and the like. I think it’s really interesting to see how many of our lives are parallel, and this is viewable by following bloggers who began writing in and around the same time (most of them are on The Autism Hub).

I look back at my early writing even two years before I began blogging — some two hundred pages of our experiences with different therapies and therapists, supervisors, media and the emotional wrangling that went with it all. I remember being somewhat rebellious to what the experts had to say and was stubborn enough to want to follow our own path. I remember the parents with older autistic kids — there were two camps really — those who said that I was too early on in the autism process mill that “Adam is a cute little pischer now, but wait until he grows up,” to parents of even older autistic adults who quietly observed me and acknowledged the stage I as at, knowing full well that autism is something that will be forever a part of our children and our lives. I think I saw in there eyes some strain as well as some peace — the strain of being burned by autism politics, the strain of raising a child in a world that did everything to fit them like square pegs into a round hole. But also behind the strain was an aura of peace, of time leveling it all, of what we call acceptance for things that just are and will be. This is a part of acceptance that interests me — how people make different decisions and how time weathers us all.

I do not know what lies ahead now for Adam and I. I was a woman who was married and felt some refuge. Now I stand with Adam on my own, no less resolute but having to step back and take some quiet time for his sake and mine.  I made the decision to put Adam at the top of my list of priorities. For better or for worse, here I am.  I am proud of our lives. I am proud of how I’ve lived mine so far. I have no regrets. I cannot change the kind of person I am. I cannot change the decisions I made. We can’t make our husbands, wives or partners want to join us on the ride. Some of us move out into the world and try to make a change. I imagine this isn’t easy on all partnerships. Maybe I’d rather be that woman who makes decisions instead of letting life make them for her. Maybe women like me do not always fit into the world as it stands. Maybe the sense of “not belonging” is deep within me and has given me that will to fight for Adam’s inclusion in this world.

You see, no matter what side of the fence we are on, no matter what happens, this life we all live is so interesting. It is not interesting if we sit on the side-lines and take no stand at all, have no convictions or beliefs. I am baffled when humans get pounded on the head and then cower away (by the way, I took a recent post down on Autism and Laughter study not to cower but because what I wrote was not thorough nor thoughtful and will be the first in line to admit it). I am perplexed when people criticize us and we decide we are too tired to go on. Sure, life beats us down and we need to gather ourselves and that takes time.IMG00831-20090731-1608

But this autism mom, woman, writer, little girl, friend, dreamer, someone’s ex, daughter, cousin — and all the other things that make up who I am — will never, ever, ever give up. I don’t think it’s in my DNA and maybe, I wonder, this is why I have been blessed with Adam. Adam, who has taught me so many things and keeps making me a better, more thoughtful person. Adam will know that life not defined by taking the safe and easy road, but by having the courage to make decisions. My life is changing and therefore, so is Adam’s. His life will change and therefore, so will mine.  I am in the fog of the dust not yet settled, but am keeping a close eye on the pulse. For some of you, my blog may now be a bit boring because of my life change, for others, it may offer some place where we can share some common ground. For this is why we write. This is why we share our stories. When major things happen in our lives, even if we are beaten down, it is how we rise to the occasion  that matters.

In the words of Bob Dylan:

The Times They Are A-Changin’

Come gather ’round people
Wherever you roam
And admit that the waters
Around you have grown
And accept it that soon
You’ll be drenched to the bone.
If your time to you
Is worth savin’
Then you better start swimmin’
Or you’ll sink like a stone
For the times they are a-changin’.

Come writers and critics
Who prophesize with your pen
And keep your eyes wide
The chance won’t come again
And don’t speak too soon
For the wheel’s still in spin
And there’s no tellin’ who
That it’s namin’.
For the loser now
Will be later to win
For the times they are a-changin’.

Come senators, congressmen
Please heed the call
Don’t stand in the doorway
Don’t block up the hall
For he that gets hurt
Will be he who has stalled
There’s a battle outside
And it is ragin’.
It’ll soon shake your windows
And rattle your walls
For the times they are a-changin’.

Come mothers and fathers
Throughout the land
And don’t criticize
What you can’t understand
Your sons and your daughters
Are beyond your command
Your old road is
Rapidly agin’.
Please get out of the new one
If you can’t lend your hand
For the times they are a-changin’.

The line it is drawn
The curse it is cast
The slow one now
Will later be fast
As the present now
Will later be past
The order is
Rapidly fadin’.
And the first one now
Will later be last
For the times they are a-changin’.

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.