Sunday, December 19, 2010

So here we go

I've been dreaming of offering free portrait photography to folks who have been touched with ASD. If you don't know what that is, then you are living under a rock. Autism Spectrum Disorder is EVERYWHERE! And now that I have son who has been diagnosed with it, I see it more and more. In the supermarket, at restaurants, playgrounds, schools, you name it. Here's the way I look at it. If I go to a party and tell someone that my kid is battling some kind of rare childhood cancer or autoimmune disorder, I can almost bet you that the chances of someone else knowing a person affected by that same disease or disorder are slim to none. But I can almost guarantee that if you tell someone at a party that you have a child with ASD, they will almost for sure either have a family member or know someone who has been touched by this disorder. I use this example because that’s how I started to realize that ASD is at epidemic proportions. Every time I told someone that my son had ASD (his formal diagnosis is PDD/NOS), that person had a relative, a friend or knew of someone touched by this.

I’m a part time photographer and pretty much a stay at home parent to my two sons Robert and Jacoby. My son Robert, (the one with PDD/NOS) is going to be 7, he has been mainstreamed his entire life. Jacoby, is going to be 3 this February and so far, he is ASD free. And believe me, when we were deciding when to have another kid, I was really hesitant. Robert was doing great but was still a challenge. What if number 2 was worse? My husband and I weren’t sure what we would do, but one thing we did know was how to stop our son’s ASD in its tracks with super early detection. If we could stop it one time, we could stop it again. We are gambling folks, and so far the gamble as paid off. Jake is fine and he really pushes Robert out of his comfort zone and continues to help him make big strides in fighting against his autism.

But I digress. Instead of giving an entire history of our life, I’ll just blog from time to time about our life with our boys, Robert, of course, being the focus. But this blog is more about my desire to help other families coping with spectrum disorder.

I photograph children and now I have started to shoot weddings as well. But what I have always wanted to do; besides high-end editorial fashion work (yes a dream of mine, but at this point in time still just a dream) is shoot a project. An art project of some sort. So a few years back, when I first moved to Boston, I met a really great family with a son named Max. Max was beautiful, smart and unusual in a really fantastic way. Eventually his mother told me that Max had Aspergers Syndrome. Right then and there, I knew that my son was like Max. (And Robert was only 2.5 at the time) Anyway, I was able to photograph Max…really well! He let me in. And so I started to think, hmmmmm. I can do this; I can shoot people with autism.

Fast-forward 6 months later, and I was spending time with my best friend (I will keep this family's name confidential to protect their privacy.) They have a son with autism too, and this child at the time was pretty non-verbal. (What are the chances that my best friend AND I would both have kids with autism? Jesus!) Anyhoo, I knew this boy’s “thing” was music. All kids with ASD have a “thing” that they are really into and they do it exceptionally well. Anyway, I really wanted to capture this boy, so I followed him into his basement and put on some music, LOUD. This boy started to dance up a storm. I put my camera down and proceeded to dance like mad with him. We were literally climbing the walls together. All of a sudden, this child looked right at me. He connected with me! He lifted his hand while laughing and pointed right at me. I did the same thing back to him. Then I picked up my camera, click and we were done. And I knew I had to do this more.

So I started to offer free portraits to families affected by autism. In exchange, I want their stories. This blog will be the start of, well…I have no idea. But it’s a chance for these families to tell it like it is. Not the stupid homogenized Parent’s magazine shit, where you hear “well we were blessed anyway”. But the good the bad and the ugly of autism. If you have a story to tell, contact me and we’ll talk, shoot and get your story out there.

If you want to know even more about this project and how it started, check out this blog entry on my photo blog.