Thursday, February 28, 2013

Domino




Most of our children go through obsessions. When I was in school I remember how much I loved "M.U.S.C.L.E." men (remember those little pink guys that came in a trash can if you bought the 10 pack). I used to take those little guys with me on the bus and make them wrestle with my buddies on our homemade wrestling rings.

We grow out of them, or, in some instances, they are taken away from us. Jack used to be obsessed with the Incredible Hulk (you can read a fascinating blog about that here). But it went too far and we had to take it away from him.

His newest obsession is Dominoes. He caught a few YouTube videos of elaborate domino rallies and has been hooked ever since. So our house has been recently inundated with domino rallies. He's learned a few "tricks" (collapsing towers, direction spinners, etc) and the layouts are pretty freakin' sweet.

Let's talk about the therapeutic value of dominoes:

They are a preferred activity

If Jack wants domino time, he must complete all his required tasks.

They are delicate

The OTs love this one. Setting up dominoes requires both care and patience. Virtues we work on every day. This is a kid with a pretty moderate SPD... I never thought I would hear him telling ME to be quiet and sit still so as to not topple the dominoes.

They have funny dots on them

And little does Jack know that those funny little dots and those funny little questions daddy asks about them are keeping your math skills at grade level. Yes!

Your peers are not as good at dominoes as you are

This makes Jack an expert. I've seen it with my own eyes. A classmate that has never connected to you comes over daily and starts conversations. "What are you doing"? and, most importantly, you have the confidence to answer.

Dominoes do not have misunderstood feelings

The Hulk dealt with anger and rage. You deal with anger and rage. I deal with anger and rage. Your teacher deals with anger and rage. Even the President deals with anger and rage. There is a beauty in the simplicity of your only duty being standing up, or falling down.

Which brings me to the metaphor of this post.

Dominoes have no social expectations. Their sole duty is to lean on another domino. Domino rallies can be complicated, interpretive, complex, and beautiful.

And you are all those things.

Dominoes act on one scientific principle - momentum - and when they fall, they are simply picked up for something newer and better.


This afternoon, Jack will be presenting a lesson to his classroom about his dominoes (if he completes all of his tasks). Jack... in front of a classroom of his peers answering questions. I sincerely thank his teacher for this opportunity. It's refreshing and inspiring seeing teachers allowing valuable class time to inspire one. To allow for my boy to be the one that others want to learn from. To empower inclusion to him.


Friday, February 15, 2013

I'll Be Missing You


We've been working a lot on spelling these past few months. There are several yellow legal tablets strewn about the house that we have been pulling from to dictate our weekly "ch", "ng", "th" words. While grabbing a few blank pages from one of these notebooks, I came across this.


I will miss you.

The other pages in the notebook that had writing on them contained notes from a sci-fi writing for film and television class I took at UCLA in 2003. There are some of Jack's doodles. There are a few notes from when I took the LSAT in 2006, and our password for HBOgo. So here it is, a snapshot frozen in time. That's my handwriting. Who or what could I have possibly feared missing so much that it must have been documented.

I spent an afternoon marveling this. I imagined that sometime between 2003 and 2006 I had passed a note to a classmate, or a friend, or my wife. I thought about saying good-bye, and the finality that comes with it. I thought about missed opportunities for chance encounters and the emptiness that follows. I even thought about golf shots that hooked left and violated the beauty of perfection.

What could I have possibly missed so much?

Jack was diagnosed in 2009. My life changed. Marriage and parenthood proved that long before any diagnosis. I had to learn to put others first. I'm a pretty selfish guy, so this was a big learning curve. I've learned what it means to love a spouse. I've learned what unconditional love is to and from a child.

I have been doing little since Jack's diagnosis that doesn't put Jack first. I try my hardest to spread my love and attention to my wife and daughter and friends and family, but Jack still gets most of it. It puts myself pretty low on the list.

I'm not ashamed of this. I'm not some victim that "needs to take time for yourself". I take my breaks when I need them. It's a transcendence that makes you a better human being. A better member of community. A better parent. A better spouse. A better advocate.

In 2003, I wrote a note to myself.

I will miss you. 

I am a different man now. I am a better man.

If I could say one thing to the man that feared missing himself, knowing where I am today, knowing my fulfillment, knowing my transcendence, knowing my joy, it would be this...

I will miss you, too. 

Wednesday, February 13, 2013

Pinball Wizard





When Jack was in Kindergarten (last year) he had an aide (here is her wonderful story) that let him take pictures on her iphone as a reward. Jack has always been excited by taking pictures. What she had realized is that through the hundreds of pictures he took, 50 of them were amazing. She put together a slide show DVD and it played at open house. It was called "my life in Kindergarten" and had his name and everything for all the parents to see.

It was indeed beautiful. It was beautiful to hear parents (filmakers, actors, directors and artists) stop and say "man, that kid is good". Few of them knew he was the autistic boy in the class. It was amazing to hear Jack tell you about the pictures... dare I even say take pride in his work.

Here's what I want to present to you, my readers. I spent the morning downloading the pictures Jack took at Disneyland. There were about 50 pics and these are my favorites.




Jack sees the world differently... we know that. There are no pictures of faces. Jack sees the world differently.

Sometimes it takes a camera for me to see the beauty in this world that he does.



And a quick picture of the photographer... sitting on the back of a bench (taken by his mama).


Please, please, please keep art in schools. Let these kids know that they can be successful, even fulfilled, with more than math and ABCs.

Tuesday, February 12, 2013

Disneyland



We took the whole family to Disneyland for my daughter's 3rd birthday last Saturday. As is the case with most 3 year-olds, Jade is obsessed with all things Disney. We like to think it's because she was born at Providence St. Joseph's hospital in Burbank with a view of, you guessed it, the Disney Studios, but whatever. It's a talking mouse. Ever since she learned there was a place that Mickey and Minnie and Pluto and Princesses actually hang out, we've heard of nothing else.

So Jade has made it clear for the last 6 or so months what she intends to do for her 3rd birthday... we were welcome to join her, but she was going to meet Minnie, dammit.

So, what do we do with Jack. All children deserve to go to Disneyland in their lifetimes, right? He's been super aggressive and non-compliant recently, so we knew it would be a nightmare. We thought of splitting them up, but neither my wife nor I wanted to miss Jade meeting Minnie, so we bit the bullet... We took our kids to Disneyland.

Disneyland has a very cool policy I'd heard/read about for guests (not just children) with special needs. It's called a "guest assistance card" and it allows you and your party (up to 8, I think, maybe just 6) to avoid most of the lines and get on rides near the front. Most of the blogs and anecdotes I've read about this situation include tales of horrid policy abuse as well. Tales of park guests yelling at special needs families... "He doesn't look that disabled to me" "What, is your money better than mine?" "He can walk, he can stand in line" etc. Nonetheless, and armed with clever answers to those taunts, we registered for our guest assistance card.
It was hit and miss. Some rides allow you to get in the fast pass line, some the handicapped accessible entrance, and some... nothing.

So, since my wife does not like rollercoasters, and my little sensory seeker loves them. We split up in the park with the kids... and Jack did perfect! We waited in line for about an hour for the Matterhorn (an E ticket ride for you old-schoolers). He even introduced himself to the 7 year-old girl in front of us in that line. He was a bit "stimmy" between rides and at lunch, but in lines (regardless of the length) he was perfect. My wife took him on Pirates, twice. And I got to take my baby girl to meet Minnie (which you have to wait in line for about an hour to do now... she used to walk the streets back in the day). I got to watch the princess parade with my little princess, moments I am glad I did not miss.

So all of the planning and worrying of the stigma of the guest assistance card were thrown out the window. It was easy as pie.

But I want to talk about registering for said card (and I urge ANY of you to do it). We came prepared. We brought his diagnosis paperwork with us, just in case it was denied. You go to the "guest services" building on Main Street and, you guessed it, wait in line. You get to stand in a line with other disabled families. Silently judging them and yourself. Wondering who is and who isn't "faking" it. And you get to deal with your own personal guilt for asking yourself those questions.

We get to the front of the line and my wife says we need a pass for our autistic son. "We don't give out passes based on diagnosis alone, what are your concerns"?

Now, I'm sure Disney is not going to open themselves up to the liability of denying disability access. I'm positive that the girl behind the desk did not have the power to deny anyone a pass, but I thought to myself... "What an interesting question"? My wife instantly rattled off our concerns; elopement, aggression, over-stimulation, etc. and we were issued the pass.

If a family was "faking" it to get a pass, they would not be able to answer that question right away. I laughed to myself as I thought of some mom or dad fumbling with an answer... "ummm... he's autistic?".

What a great screener question. Well played, Disney, well played.

Disney was an adventure. It was crowded. It was expensive. There was a lot of re-direction and "time away" at times.

And every one of you parents should absolutely do it in your lifetime.

Otherwise I would have missed this.

And regretted it for the rest of my life.

Monday, February 4, 2013

New Way to Dance





The blog as literature... Hells yeah it is (formerly memoir writing).

You bet your ass.

Blog writing has taken off in the past several years, but is it a valid literary form? Of course it is. What used to be called memoirs is now called blogging.

So, today we're going to have a little fun (and not mention a thing about autism). Here are the four most common abuses of the English language in this new form of literature we collectively call the blog.

1. The ellipsis.

   The ellipsis mark (...) is used to indicate omission. It can be used at the beginning, middle, or end of a sentence or, more commonly, quotation. "The ellipsis can be used at the beginning, middle, or end of a..." is a correct use.  It is not used to mean a dramatic pause, or a "trailing off" of a thought. "I need a drink... beer!" is incorrect.

2. Parenthesis.

   Internal Parenthesis are used to fill in information (emotion) that qualifies an inference or clarification. It is not to be used as a distraction (or an entirely different thought). Like the way I did that? (Did you)?

3. Line Breaks.

    Line Breaks are used to indicate the end of a paragraph, and the beginning of a new paragraph. They are not to be used to highlight the importance of a sentence.

No, they are not.

Never.

4. Run on Sentences are to be avoided. They are not to be used to indicate that something is really busy or hectic or chaotic and by writing one long sentence it makes the reader feel said chaos in what the author is describing because it's hard to follow and chaotic to read.

The entire reason I wrote this blog was to praise the blog as an art form. Four solid rules of writing and grammar, that have become acceptable because of their colloquial use in the blog form.


Long live the blog (it's awesome)...

Really, it is.