This is a speech my wife Kathy gave at a benefit for The Help Group on December 6th, 2010. Not only is her speech a poignant account of our personal experience raising a child with special needs, but it also served as an inspiration for writer Bridget Carpenter in creating the scene where Kristina and Adam explain autism to their son.
One in every 88 children is born on the autism spectrum. For the thousands of families with stories just like Kristina and Adam's and mine and Kathy's, please consider making a donation to this year's Walk Now For Autism Speaks.
I want to accept this award on behalf of all the mothers and fathers raising children with special needs, on behalf of all brothers and sisters growing up with siblings with special needs and on behalf of all people with special needs who are working harder to get along in the world.
I wanted to tell a little about our experience raising a child with autism.
We told Sawyer he had high-functioning autism, also known as Asperger's, when he was in fourth grade. 'Til then we only had talked to our family and closest friends or the teachers and therapists who were helping Sawyer about Sawyer's diagnosis.
It was something we wrestled with for years before we did it. We didn't know what the right time was. We didn't know what exactly to say. We worried that the weight of the label would crush his self-esteem, or that it would hopelessly stigmatize him to other people. We didn't talk to other people about it because it seemed only right that Sawyer should know before other people knew about his diagnosis.
Then one day a kid on the opposing baseball team told Sawyer when he was standing on third base that Sawyer was retarded. When Sawyer came out of the dugout he looked crestfallen and he asked me, "Am I retarded?" I assured him that he wasn't. He was a crackerjack chess player, a lover of history and reading and strong in math. I said, "There are some things that are harder for you - staying calm or knowing how to connect to a friend or being flexible. Those are the things that are hard for you." But I didn't go farther than that.
A few days later, Sawyer was having a tantrum. I felt lucky that Jason was home to help Sawyer and I stayed with Phoebe, his younger sister, in her room with her on my lap. I said to her, "This is hard. I want you to know you can always talk to us about Sawyer's tantrums. Daddy and I talk to each other and we have a support group with other parents; you should know you can always talk to us."
Phoebe was six. She said, "I know I could talk to you and Daddy about it, but I can't talk to friends about it."
These events flipped the switch in me. The pain of isolation and the cost of hiding was too great. 'Til that point I didn't really know I was hiding.
That night I talked to Sawyer first.
"You know how you went to speech therapy to learn words and to occupational therapy to learn to play different things and to get more comfortable in your body. You know how in your preschool they worked on teaching kids to play with each other. You did all that because you have something called high-functioning autism or Asperger's syndrome."
Sawyer was sitting on his bed, looking down, but I knew I had his attention. "There are special gifts that people with Asperger's have too. You know how you have an amazing memory. And you know how you are so passionate about sports and you can tell everything about the history of baseball. Those are because of the autism," I said.
"There are things that are hard for you too. Social skills are harder for kids with Asperger's. You have had to learn to remember to look in people's eyes when you are talking to them, or to smile when you meet someone, or to stay calm when you have a different idea. These things come without thinking about it to other people, like breathing. You have had to learn them."
"And you, Sawyer, are a rock star; you have come so far."
I reminded him that he, who had started speaking at four-and-a-half, after years of speech therapy, who struggled with tantrums and phobias and connecting to other kids, had learned to attend mainstream classes, could play baseball and chess, read the paper, have conversations about politics, was learning to stay calm when having a big feeling and had a best friend. "But you are always working a little harder than other kids to remember those social things. You worked harder to learn words and to play with other kids. That's because of the autism."
Sawyer gave me the rare gift of looking straight at me with his big green eyes. "Does Phoebe have it? Does anyone else in our family have it?"
"No, we don't." I felt the weight of him learning that he was the only one in our family to have autism. I answered, "But we know a lot of kids who do." I named a bunch of kids from Sawyer's school, kids that he really liked.
I could see the tears welling up in his eyes. "Will I always have it?"
"Yes. You will always have an amazing memory and a deep passion for the things you are interested in and the social skills will always be something you will have to learn about and remind yourself about. You are amazing and a superstar and we love and respect you so much," I said.
It was then that he kicked me out of his room. He was crying.
Before I left, I said, "You know Sawyer, you are going to have a lot of questions, and Daddy and I are here to answer anything at all. For always. Whenever you have a question." I gave him the book "Freaks, Geeks and Asperger's Syndrome," an autobiography written by Luke Jackson, a 13 year old with Asperger's.
As hard as it had been to do, I knew it was the right thing. Sawyer knew he was different, and even though it was hard news, he could now know more about his particular strengths and his challenges.
I told Phoebe that night too. She asked us, "Will I get it? Who else has it? What is it? Why did Sawyer get it?" I felt a weight lift and I was ready to talk and answer what was a floodgate of questions.
A few days later, Sawyer came out of his room holding the book "Freaks, Geeks and Asperger's Syndrome" in his hand. "You know," he said, "we (meaning people with Asperger's syndrome) don't like to try a lot of different foods. I just wanted to let you know."
"Okay," I said. "I get that."
Days later, Phoebe was practicing a basketball shot on our driveway and was having some success. The garage door was sliding open and there was Sawyer, with a basketball in his hand ready for some alone time shooting baskets. After he has a day out in the world, he needs his time to unwind and be alone.
Phoebe was so thrilled that Sawyer was there and could witness her newfound success. "Sawyer look at this." She bent her knees ready to launch the ball and just at that moment, Sawyer pushed the button and the garage door started to slide closed. I could see Phoebe felt hurt and deflated.
I said to her, "You know, Phoebe, that is the autism. He was just about to get his alone time, and it's harder for him to remember to say, 'I need alone time right now. I'll watch you later.'"
It felt so liberating to now have a language to talk about our life.
In a sense, the show Parenthood is coming out to the world about autism.
In its fetching way, it is bringing people into the home of the Bravermans to help them understand a phenomenon that is increasingly prevalent in our culture. People know what is hard for a child who is blind or has cancer or cystic fibrosis. With autism, it is not as obvious. The inflexibility, the tantrums, the sensory overload, the missed social cues all could look like a kid who is just difficult and parents who don't have control. Also, autism looks different on every kid. Some kids may seem serious and solitary and other kids may just be desperate to keep the conversation on sports statistics through the 20th century.
These days it's easier for me say those words, "My child has autism or Asperger's." I am less worried that people will make assumptions. Now I feel like the character of Max Braverman gives me hope that people will see the boy first, with all his beauty and have more compassion for his challenges.
Thank you to the amazing Parenthood family who have so generously given their time and extraordinary talent to make a real difference to the cause of kids with autism. Thank you to all of the helping people, the teachers, aids, therapists, who have supported and guided our family through the years. They are simply some of the finest people we have ever had the privilege to know. Thank you to our dear friends who have walked with us on a road less travelled. We love you.
Thank you to Jason for including in his beautiful portrayal of all kinds of parenting what it is to be a family raising a child with special needs. He has brought understanding, light, and dignity to us all.
December 6th, 2010