Wednesday, February 2, 2011

A Bit Rusty, Very Proud

Oh my gosh. Oh my, oh my. It appears that it has been about one year, 5 months, and 5 days since I last wrote here at One Dad's Opinion. Pardon me a moment while I stretch and yawn...

Ahhh, much better. And now, back to it.

You may wonder why I have chosen this moment to return to One Dad's Opinion. The reason is simple - I want to share a story with the one group who is most likely to appreciate its value. A group who I admire and feel a part of to this very day, despite the fact that I have been a dusty old member of the archives for well over a year now. Heck, some of y'all might not even know me at this point, might not know that I was part of a great team that represented the Autism Hub on several different occasions at the highly respected University of San Diego Autism Insititute.

I relented from my blogging for a long time. Partly it was because the constant controversy and attack/defense made me feel a bit mean. Partly because my real life demanded more attention than I could provide in any given 24-hour period. And mostly, mostly because my favorite topic of conversation at the time - my son J - had matured to an age that I no longer felt like I could write about him without his consent. Big, ethical issue that I decided must go in favor of least possible harm and most possible respect. So I quit. And here I am back again. And now you will see why.

Following is an excerpt from the blog of a very dear friend of mine and my family's. Someone I know and respect very much:


some words to chew on

Today I wore this to work out...

Except half way to gym, which is 30 minutes away, I decided that the lil' guy in the back was hacking to much to bring him to the kids' club.

No work out for mama: Bummer.

Sick kiddo: Bigger Bummer.

Solution: Do Zumba on the wii at my friend's house after I tutored her third grade son.

Simple enough, right?

Well, clearly not so much.

Her son has autism.

Just like my Luke.

And no they are not like Rainman (written with a smile).

Autism is a spectrum of behaviors that range from very mild to very severe.

My friend's son saw my shirt and asked me one of the most difficult questions I have ever had to answer in my life.

"Why would they want to take down autism?"

For him and all the others with autism, finding a "cure" doesn't make sense. They are quite content being who the are. They don't need to be changed.

They need acceptance.

So I explained to him that autism makes his brain see things differently from others in the world and that it makes him extra special.

I also explained that each one of us has traits that are different from others. We each have talents and we each have weaknesses.

Autism or not.

I spent the 1st few years of Luke's diagnosis desperately trying to cure him. Shame on me.

Having Asperger's (mild form of autism) gives him incredible talents. Why would I want to cure that?

Instead I want to spend my energy fighting to make the world know that different is okay.

As my friend's son so simply asked, "Isn't autism part of my personality?" He couldn't understand why I'd wear a shirt that wanted to take down who he is. This is a 9 year old.Amazing.

Instead of taking down autism, I want to take down discrimination. I want my friend's son, our Luke, and all the other spectrum kiddos to know that they are loved and accepted forwho they are.

We don't want to change Luke and we certainly don't want to take down his autism. After all, we don't want to take down Luke. We don't want to take down his amazing talents and perspective. He was put together and perfectly made. We don't doubt that for a minute.

The power of words is mind blowing. And the insight and question from an introspective 9 year old, made me think harder than I have had to for a long time.

I hope you think about it too.

Much love,

Perhaps I lack the flair of a Hollywood screenwriter in creating tenuous drama, but can you guess who the 9-year old boy is in her story? Yes, it's J, my son. I am so freakin' proud of that kid I could burst. It's not like I have sat down with J and expounded on the social model of disability ... the kid has never even heard the word Neurodiversity. Can't you see? J's comments simply make me proud of his intent to carve out his own indivuduality. That's it. I'm damn proud of him and I'm absolutely thrilled that this amazing kid counts me as a member of his team.

I'm not so sure that this Dad has the gumption to return to blogging. But I'll tell you this - while J's assertions (and my friend's resulting change in worldview) are most definitely not a result of any tangible outcome that has been created by the years and volumes and transcendent quality of those of us who have participated in the combined output of the Autism Hub, they sure as hell stand as evidence that our message rings sound and true.


Niksmom said...

So good to "hear" your voice again! And what a great story! Glad you stopped by to share it; it brought a big smile to my face.

Bev said...

Steve! It's great to see a new post here! I am happy to hear that J is becoming a strong self-advocate. I'm hoping to hear that another puzzle piece t-shirt has been demoted to dustrag. Squawk!

Anonymous said...

read you for the first time today! so i haven't missed you, but glad nonetheless that u are back with that post. neurodiversity starts at home!

Club 166 said...

**Blogger dumped my comment from yesterday when they crashed, so "reconstituting" it now**

Hi, Steve!

Isn't it great to see our kids advocate for themselves? Makes one just burst with pride. Buddy Boy had a self advocacy event of his own back in January, when his principal invited him to speak to a group of teachers regarding what it was like to be autistic. He explained to them all the "neat" things about being autistic, as well as some of the challenges he faced. Not to self-promote (too much), but I wrote about it here.