I am writing today from Rhode Island, and if I am a bit more sentimental than usual, it's because I have been working on a movie and am far away from my family for three months. On Thanksgiving I was able to go home for a few short days. I decided on the plane that no matter what, I would not fight. That if the mail was still unopened for six weeks, another few days would make no difference, if the garden was wilted, the homework behind, my car battery dead, it made no difference. I would just cuddle and hold everybody's hand all weekend. That's what I did, and it was bliss.
I had missed them so much, that when Thanksgiving was over, even though I was tired, I didn't want to go upstairs. I just dozed on the couch and let their voices wash over me. And because Dov has no voice, but I wanted to be connected, I lay my head in his lap, and he patiently put up with it.
In theory, my connection to him is the same as when he was an infant, all those extra hopes and dreams you put into your first child. The incredible excitement, the joy with which I shared him with my parents, the love I felt towards a beneficent god who created the continuity of life. And the funny thing is that though nothing about this boy has turned out the way we planned, when I look at Dov - 14, almost totally non-verbal, slim and sweet, some would say frail, I can still recall all those first feelings and a rush of love courses through me like a waterfall. But in actuality, it is so hard to spend a lot of time with him. Neither of us seem to have the attention span for it. Simple things like throwing a ball or knowing what to get him for Chanukah become almost impossible. And sometimes the best I can do is to put my head on his shoulder and let him know that he will always be so very cherished.
Dov has had a mixed year. He continues to like school and takes solace in his family. He went on a field trip to San Francisco and slept through most of an opera (because some things are definitely passed down from father to son) but as he gets older, I don't think he gets any more used to being autistic.
This Passover we were at my parents' house, and a lovely young woman was seated next to Dov. I have known her since she was a baby and now she is all grown up, a young physician, about to be married. She was telling the story of her marriage proposal, it involved Paris, surprise and at the end, some poetry. We all appreciated the story. But Portia looked over and noticed that Dov was very quietly crying. She took him aside and asked him what's wrong. Typing slowly he said “I am sad,” and then, “girls want voices.” She whispered to him,” Don't give up. We haven't yet.”
You may have heard that we have decided at CAN that we can best serve the people we love with autism by joining forces with Autism Speaks. Our hope is that this new organization will be more powerful and more effective and even more insistent.
This decision was a topic of conversation this past Thanksgiving weekend and Dov, who listens to everything uttered at the kitchen table, was worried. Portia asked him why, and he typed out on a letter board, the only way he can communicate, “CAN is hope.”
And I agree. Cure Autism Now is hope, and has been for Dov, for us and for thousands of other families. And I think that Dov is afraid that as he gets older and has spent so many years being so very autistic that people will forget about him or lose hope for him or stop fighting to get him his voice.
So I write this as much to Dov as to all of you who have walked with us, cried with us, fought with us, lost and won and come back again so many times with us. We will not lose hope. It's something we just don't do.
As we join Autism Speaks we pledge to stay true to everything Cure Autism Now is and to bring that into the new organization. We are asking you to come with us, get even more committed, show your passion with even more power and dedication. As we grow we will get faster not slower, our hearts will grow bigger not harder, we will listen to you more. Whether our kids are 14, 40 or 4, whether they can't say a word or can't stop talking about train schedules, we will be ever hopeful. Whether we are called Cure Autism Now or Autism Speaks, our commitment to a better life for those with autism does not change. We will never give up on them.
As we move into a different chapter in the fight against autism, we still need your commitment. We need your physical, financial and your emotional strength as we continue to fund the mission that CAN started with. We will never stop working towards our goal of preventing, treating, and curing autism for individuals and families today.
If we have accomplished some things in the past 10 years it is nothing compared to what we hope to accomplish next year, because as I tell Dov, we are not perfect, only perfectible. We keep hope alive, we work like crazy and as always, we give thanks for blessings already on their way.
Jonathan Shestack and Portia Iversen
Co-founders, Cure Autism Now