I have been reading food labels since my husband became a vegan eight years ago. When my oldest son was diagnosed with milk/soy protein intolerance as a baby, my reading took on a new vigilance, examining each word on every baby food product. I knew every ingredient indicating the presence of foods they couldn’t eat. But the one label I wasn’t prepared to read was the one given to our middle child – Autism Spectrum Disorder.
We had known for a while that something was a little different about him but we couldn’t put our finger on what it was. Finally at age 3 ½ our developmental pediatrician told us what we had guessed – that our son was on the autism spectrum. The CDC estimates that 1 in 110 children have ASD, and even though he didn’t have the classic signs we weren’t surprised by the diagnosis. It was actually a relief. We had tried to get him help, but without the autism “label”, the right services weren’t available. Now many accommodations were accessible at home and at school that weren’t before.
Following his diagnosis, I shared this relief with family, friends and the autism community through an essay on the Autism Speaks website (http://blog.autismspeaks.org/2010/01/22/in-their-own-words-welcome-to-the-community/). Using my son’s name and story I illustrated how amazed I was to be so welcomed into a family of people struggling with our same issues. I didn’t think how my need to share was potentially “labeling” my son for life on the internet. I didn’t stop to explain to family and friends what autism spectrum disorder meant for our son.
I agonized over what I had done – “outing” my son as autistic without his consent or concern for his privacy. But in the end it was the best decision I’ve ever made. I realized that regardless of the stigma associated with autism, this is who my son is and will always be. Without that label, he could have spent years struggling with the most basic life and educational skills. As parents our job is to help our son understand what his diagnosis means, and how it makes him special in so many ways. And as my son’s mother, it’s my responsibility to help others get past their lack of knowledge, read his label, and see him for the remarkable little boy that he is.
One hour. That’s how long it took for me, Howie , and Lewis to walk a loop around our neighborhood today. It’s a walk that would normally take us 15 minutes, with both kids in the stroller and me in “exercise mode”. However, today Howie wanted to walk himself, and not ride in the stroller. I had grand plans of pushing them around the neighborhood quickly, getting the workout I desperately needed in enough time to get back for the bus while Lewis slept in the stroller. But it was a beautiful day, and we left the house with time to spare, so I let him walk.
We started out slowly and then moved to a crawl. Howie stopped to pick up every purple leaf, and literally smell every dying flower along the way. He stomped on an acorn, and then plopped himself on the sidewalk to examine what was inside it. He peered through the neighbor’s bushes to see what was behind them, and touched the ReMax balloon on a “for sale” sign at the bottom of the street. I found myself checking my watch every five minutes, constantly saying “Hurry up, we don’t want to be late to get Gerry at the bus.” But there was no hurrying him. He meandered up and down the street, asking questions about what the street signs said and stopping to listen to the birds “singing to each other”.
As I was about to tell him for the 40th time to hurry up,. I stopped myself and just watched as he chased after “the biggest leaf I have EVER seen, Mommy!”. What was I hurrying him up to do? We had plenty of time and Lewis was quietly sleeping in the stroller like I planned. What was the rush? My husband and I had just spent that morning meeting with a child development psychologist, talking about working together to help Howie with his behavior issues. The psychologist wanted to hold off on any testing until Howie was four, because he felt that he was getting help already in school and that four was a good age to do the kind of testing that he felt he needed. I wanted the testing done now, so I could find out what was wrong and get the help he and I needed at home as soon as possible. I was looking for some sort of magic – someone to tell me you need to do this, this and this and everything will be ok. What the psychologist told me was that there was no immediate solution. There was a lot of hard work that we needed to put in every day to be able to see the results we wanted, and that it was work that would be ongoing for a long time.
As we continued on our way, I realized that this walk was an example of what we needed to do as a family to help him and us all. I needed to put aside the constant need to keep moving – whether it was on a walk around the neighborhood, or always running errands to keep him out of trouble in the house – and just put in the effort and time to sit with him and find out what makes him tick. For that hour that we walked, things were perfect. He listened. He held onto the stroller when we crossed the street without having to be told. He laughed and sang and left Lewis alone so he could sleep.
We finished our loop of the neighborhood and stopped back at the bus stop. He turned to me and said “Mommy! Can we do that again?” I promised him we could. If he was willing to put in the time, so was I.