Left Brain Right Brain

I’ve been thinking of this post for a long time. Pretty much since the first day the Autism Speaks “I am Autism” video came out.

I would have loved to make a response to the video, as in “I am Socks” or “I am Autism Speaks“.

I’m just not that creative. But I am able to lean on other people’s creativity, which I’ll do here in this blog post. First I’ll restate: First I’ll restate what I have said before: I didn’t like the way “I am autism” put the focus on pretty much everyone except the autistics. I didn’t like how it framed autism in terms of how it costs those of us non autistics. I didn’t like how the heroes of the story weren’t the autistics themselves.

I think a commenter to this blog, Emily reflected much of my views when she commented,

I’m no warrior. I’m doing the job I signed on to do when I decided to bear children. I took on that responsibility—whatever it entailed—when I, an adult, made that decision. There’s nothing warrior like or heroic in that. Heroes face fear and move forward in spite of danger. I can’t lay claim to that.

But these kids who fight every day to learn or bear the inputs around them or self regulate, who live minute by minute in ways that the neurotypical could only vaguely understand if they were packed into a echo chamber full of revving jet planes, these kids and autistic adults are the real fighters. I think of the severely affected children I know, how I’ve known them to work up the courage to do something terrifying to them, something that to a neurotypical would be barely noticeable. I’ve watched these kids hesitate, wait, stim, think, and then rush headlong with extraordinary bravery into it. That’s a hero.

Many people don’t like the way I am framing this. They say that people like me downplay the difficulties of being the parent of an autistic child. I point them to a recent post where Kev noted:

We all struggle. Its damned hard, we all lack services, all autism parents all over the world

Yes we all struggle. Is this supposed to be news to those outside the autism communities?

Guess what, I was a burden to my parents. I cost them money. I cost them heartache. All this even though I am not autistic. I was just their kid.

And, yet, somehow, they never once spoke of me in terms of how much I cost them.

Why should I treat my kid differently?

I am constantly reminded of the old movie Boys Town, and the real life Boys Town that exists to this day. If you remember the movie, you probably know where I am going with this. I admit, the image is a bit sappy by today’s standards, but I keep flashing on the statue and the slogan that Father Flanagan used for Boys Town: “He ain’t heavy, he’s my brother“.

Does anyone really believe the little kid isn’t heavy?

If that doesn’t make the point, let me put it another way. How many disability groups are there where the parents focus attention on themselves and the how much of a burden their children are?

One of the arguments often made is that Autism gets lower private funding that pediatric aids, juvenile diabetes…many other conditions. If those communities can pull in more money than the autism communities, we certainly don’t need to spend our children’s dignity in a quest for funding.

I always try to write as though my child will someday read and understand what I have written. Whether it will come to pass or not is irrelevant. Why should I write differently if I think my kid won’t understand what I say?

If this should come to pass and my kid reads what I have written, I realize that I will have to explain to my kid why at times I have been childish or lost my temper. But my main goal is that I hope to keep to a minimum the number of times I have to apologize for disrespecting my kid.

With all due respect to fellow autism parents Alfonso Cuarón and Billy Mann, I don’t consider “I am autism” to be respectful.

Once again, I will rely on someone else’s words, words from another songwriter. After I listened to “I am autism” I had to listen to this song. I listened over and over again. The song? “For Good” from the musical Wicked by Stephen Schwartz.

Here are the lyrics:

(Glinda) I’ve heard it said
That people come into our lives for a reason
Bringing something we must learn
And we are led
To those who help us most to grow
If we let them
And we help them in return
Well, I don’t know if I believe that’s true
But I know I’m who I am today
Because I knew you

Like a comet pulled from orbit
As it passes a sun
Like a stream that meets a boulder
Halfway through the wood
Who can say if I’ve been changed for the better?
But because I knew you
I have been changed for good

(Elphaba) It well may be
That we will never meet again
In this lifetime
So let me say before we part
So much of me
Is made of what I learned from you
You’ll be with me
Like a handprint on my heart
And now whatever way our stories end
I know you have re-written mine
By being my friend…

Like a ship blown from its mooring
By a wind off the sea
Like a seed dropped by a skybird
In a distant wood
Who can say if I’ve been changed for the better?
But because I knew you

(Glinda) Because I knew you

(Both) I have been changed for good

I have not said that my life is the same as if I never had a family. My life is also different than if my child had somehow been someone else, someone not disabled.

Like any parent, I have been changed by having a family. But when I go, my message to my child is simple: your impact on me is measured in the handprint you left on my heart. You changed me, for good.

If you haven’t heard the song, here it is as sung by Lea Salonga and Jennifer Paz

If you have watched a lot of Wiggles videos (and I have watched A LOT), you may have noticed that the Wiggles are special needs friendly. They don’t make a big deal out of it which is cool. They just include some special needs kids in videos.

For anyone who is wondering, The Wiggles are an Australian rock group that sings children’s songs. They have TV shows and videos. They also tour.

This is how we met the Wiggles. When they came through our fair city, we attended a “meet and greet” session with them. Ninety minutes before the concert they spent some time with a small group of families.

We were “on the list” so we arrived early. A representative from the Wiggles checked the list and let the few families in and escorted us to where the “meet and greet” would happen.

As we waited an extremely buff “Wiggly dancer” talked to us. Very friendly. Would you expect anything less from the Wiggles?

They sat us down in one of two sets of chairs waiting, and then The Wiggles came in. Sam, Murray, Jeff and Anthony. They were very cool. They obviously had to get ready and there were a number of families in the “meet and greet” but they didn’t make anyone feel rushed. They talked to us and best of all they were very cool to the little nonverbal guy flapping wildly with excitement. There was time for pictures.

It makes for a very long day. You show up early for the meet and greet and that is an hour and a half before the show, then there is the show. Our little guy got overloaded before the show was over but all was fine once we got of the main auditorium.

Jeff, Murray, Sam, Anthony (and you too Greg!), and all the Wiggly dancers past and present: thank you!