More thoughts on the subject

I suppose this entry was not only inevitable, but long overdue.

There are many beautiful facets of autism if one seeks to find it. However just as often there is much tragedy that accompanies the lives of those it touches. The tragedy can come in many forms; from the frustration of being unable to communicate to feeling uncomfortable in their own bodies, auties often deal with floods of feelings--both physical and emotional--that most of us cannot even begin to comprehend.

On September 11th of this year, my Tyler went into crisis for the second time this year. The short version of an otherwise very long story is simple: autism and puberty do not mix well. Tyler's version of the autistic experience would be classified by the so-called experts as severe. He cannot speak, he has sensory processing difficulties, tactile defensiveness, is often shy, and always easily overwhelmed. Many people do not realize that autism is considered a mental health diagnosis. It is not mental retardation. With that said, when a person like my son goes into 'crisis', it is dealt with within the mental health system.

Despite living just outside of Philadelphia, which has some of the finest health care facilities and options available in the country, our mental health services are, for lack of a better word, broken. And the children's services are even more sadly in disrepair. There are very few options, and often the hospitals you wind up being forced to place your child in are places you wouldn't put your worst enemy in.

This time, we got 'lucky'. Tyler was able to get placement in a very prestigious place that does great work, and even better research. They publish nationally recognized and applauded studies. Great, right?

No.

My son, who spent his twelfth birthday hospitalized, is four hundred miles away. In Pittsburgh. Not exactly easy to visit, especially for those of us working class people who do not have bottomless bank accounts and jobs that you can simply take leave of for indefinite periods of time--though I must say the agency I am blessed to work with has been more accommodating than most would ever dream of being.

It is hard to not be embittered by the process. Our family is hurting. We are apart for the first time, and to say the circumstances aren't ideal is kind of like saying there's a few stars in the universe. It just can't be comprehended. That is, unless you've walked in our proverbial shoes.

The parents of children who go through this system are a strange brotherhood. We may come from all sorts of backgrounds, with vastly different sets of ideals and morals and ethnicity, but when we pass in the corridors during our too-brief visits it is rare that more than a wan smile and a nod of acknowledgment are needed. In those passing moments, we understand each other.

Over two months have passed since our family was torn apart by a the cruel fallout of a quirk of nature, and the hurt rarely leaves. There are occasionally moments when I feel like I almost remember the comfort and happiness of "Life Before". Life before the tragedy of puberty and autism colliding, that is. People often remark how strong we are to deal with what we have been, as stoically as we have, and for so long.

Am I strong? Or am I resigned? Maybe someone else would say I'm just being realistic. What choice have I got? The choices are pretty cut and dried to me: I can fight and advocate for my son and do whatever's needed no matter how damn bad it hurts, or I can shrug and walk away and let somebody else deal with it. To me that's a self-deciding situation. It's not the nature of myself or those I love to take the second option. So really, is that strength?

Maybe. And maybe it doesn't really matter.

Although it has been hard to write this, there is a moment of beauty I should close with. A few weeks before Tyler's crisis, we took a trip to Seaside Heights, along the New Jersey shoreline. Nice little place for those of you who've never been there or heard of it. A lady named Jamie went with us. She's a beautiful young woman who was working as what's called a TSS (therapeutic support staff) for twenty five hours or so a week with Tyler. On paper she was part of The Team, but really she became an extension of our family. Jamie, bless her heart, told me that she'd ride the carousel with Tyler. I can't even look at them in motion without getting queasy, no less get on one.

Carousels. I haven't met an autistic kid yet who doesn't love them. They make music, they're pretty, and they go around and around. Does life get much better?

At any rate, off Tyler and Jamie and Bill went to ride the carousel. I approached the operator and asked her how much I owed her for the three to ride. She cocked her head and gave me a wink, and asked if my son was autistic. Being a little taken off guard by her candor, I said yes in fact, he is. This lady proceeded to set the carousel in motion and talked to me while a super long ride was taken by those on it, and told me how very much she's enjoyed working with kids like Tyler her whole life. In fact she was one of the original members of her local chapter of Autism Speaks. When I asked again how much I owed her, she told me that my money was no good there, and that money could never give her the same satisfaction as seeing my son enjoying his ride (and stimming away all the while!). The whole thing was almost surreal.

That day this past August was perfect. The weather was beautiful, we were in good company, and Tyler was having what had become one of his dwindling good days leading up to the crisis in September.

As the holidays approach, and all the rest of the world is bustling about, we are faced with the first set of holidays with our family torn asunder.

I'm trying to keep that day at the beach in the forefront of my mind.

Because, after all, there is beauty in autism.