THIS is a face of Autism
NOTE: Since writing this post, my project as turned into a non profit, with a gallery show this coming February, a book with the Camphill Special Schools in Phoenixville, PA, and hopefully I will be able to develop and program for high school age kids on the spectrum that will provide them with cameras so we can see what THEY SEE!
But here is how it all got started with this one post from about 3 years ago.
This is my oldest son. Most of my friends know that my son has PDD/NOS. This is a milder form of Autism. I have to say that this has been the worst and best thing that has ever happened to me and my husband. We knew something was "up" the second we left the hospital in May of 2004. Everyone told me I was crazy but I was pretty sure I wasn't. I fought his inability to be social, his obsessions (that still plaque him everyday), his fascination with doors, elevators, etc, his flapping hands, his tantrums, the crying until vomiting, his obsession with trains, routine, the inability to speak well, tell a story and everything else you could imagine. The list goes on and on. My husband and I knew we were fighting something when he was little, we just didn't know what it was. All we knew was that if this child wanted to come along for the ride of his life, he had to do it our way. The one thing he did have was the longing for affection, he ability to give and receive love, eye contact, and vocal dialog. The list is endless, but I believe there are a few things that have saved him.
First, was myself and my husband, not listening to anyone else but our own instincts, because if we would have listened to some family and most doctors, our son would be up the creek right now.
Second, we never thought our kid was "fine", "perfect", just "headstrong and stubborn". I am not the parent that believes my kid is so perfect his farts would cure cancer. We listened to that little voice inside us and never gave a flying f_ck about what other people thought.
Third, we compared him to other kids. Everyone says don't do that, but if you think something is not "quite right", START COMPARING. NOW!
Fourth, playgroups. Mainstreamed playgroups. I just hung out with friends and their babies. I had to be around other mothers no matter what. Partially because I am just a social creature and second because I had such incredible postpartum depression on top of having an "off kid", I needed a posse to keep me sane. My mommy group in Los Angeles, saved my life in the beginning. I thank God for them everyday. Even though I now live in Boston, they still stay in touch with on a regular basis. They never judged me or my son through the whole thing.
Fifth was leaving my career as a TV producer to stay home and raise my son. Most people don't know this but I was on my third interview at Ellen when I got pregnant. Something told me I needed to leave the biz, and I'm thankful that I did. It was a real identity adjustment for me and hard in the beginning. We don't have as much as most, but I don't give a crap. My family has been really helpful in every way shape and form. I think, for us anyway, we spend less money with me being home than if I worked. But if I did work during his infancy, I would have missed whatever was going on. And that could have made his outcome totally different. And it wouldn't have been good!
Sixth, my mother, who told me something very important. After we had our son's speech evaluated I knew there was more to the picture. I had a feeling he was Autistic in some capacity. I said, "Mom, what if he has Aspergers or Autism?" She simply stated, "It doesn't matter". She never said he did or he didn't (my mom's been working with kids in the spectrum for 30 years and she knew we had to figure it all out on our own), she just reminded me that it didn't matter. She told us he was making incredible progress from birth because we were fighting something no matter what it was. She was right.
Seventh, my camera. When my son first understood his name, I remember it like it was yesterday. He was in his exersaucer, happily bobbing around. I said, "Michael" (I have changed his name for privacy reasons) and he turned his head and smiled. Good, I thought, he knows that's his name. I quickly ran and got my little digital camera (I was shooting film for the most part back then, but had a dinky little point and shoot). I said his name again, when he reacted, I snapped a photo of him smiling, praised him and showed him the photo. He instantly brighten up again and signed "more" to me. And so my camera has helped him in more ways than you can imagine. Now when I take his photo, he will pose. He also wants to learn every aspect of how it works along with every other computer gadget that is out there, but that's an autism thing...
Here is something that I DO know. There is no cure for Autism....BUT.....They CAN GET BETTER! My son is proof. He still has quirky stuff. Stuff that drives me bonkers, but he is social. He attends regular school (of course I'm always up the ass of the school district since their job is to say 'NO' before we even walk in the room...but that is an entirely different post all together). He has friends, play dates and goes to full day camp. He loves sports, kicks ass in baseball and basketball with no signs of stopping. While he does suffer greatly from anxiety and has trouble with transitions and continues to be fascinated by trains, technology and clearly has an auditory processing disorder, most people don't believe he is on the spectrum. I will let them think that because they don't see the bad crap that occurs at home for the most part. We treat his autism like a behavior that needs to be controlled and adjusted. He stims at home when he is with us, but tries to hide it at school, which is sometimes very difficult for him. What I'm trying to say is, it could still be a lot worse. But because we didn't ignore the problem in it's early stages, refused to listen to the nay-sayers, and continue to fight for what his legal rights are at school, we are breaking new ground every day. Remember pretending an issue doesn't exist doesn't make it go away, it makes it worse. Much worse.
From this experience, I have decided to embark on a new project. It's working title is "BROAD SPECTRUM". I'm in search of people, young and old, to pose for me in portraits. I also want to hear the stories of the families and how they had, have and are still dealing with, coping with, treating and living with spectrum disorder. In return for the free sitting, I want the stories in writing. Of course the families will receive full high res images and a large print of their child, friend, etc. The big dream? A book. Of course I would donate a portion of the proceeds to Autism Speaks. Now I just need the courage, money and time to make it happen.
Now I just gotta find the subjects, besides my beloved son.