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Just when I think maybe I've cried enough, I see the Keshet choir and I guess I haven't: I realize there's more yet to do.
I work in Hollywood and tonight the Oscars are being presented. But I spent the morning at Keshet meeting practically everybody who was here on stage and I'm so much happier to be here. It's such an honor.
I'd like to talk to you a little bit tonight not as a producer or an expert in anything but, as a dad - as a Jewish dad of a little boy with autism. And I'd like to talk to you a bit about two very important things, which are Tikvah and Avodah - hope and work. Either one without the other is okay, but together, hope and work are so much more meaningful and give more meaning to the other.
But, first you know there's a Midrash, a Biblical commentary.
I learned a long time ago about Adam. It's his first day in the Garden of Eden and he's busy tasting and naming things and having a very lovely time until the sun goes down - which is something he's never seen before.
And suddenly, its night and he's stumbling in the dark and he's groping and he's very scared. And he cries out to God and asks for help, asks for a miracle, asks for divine intervention - because he's afraid of the dark.
Many of us in this room, I think, just when we thought maybe we had attained paradise, have found ourselves scared and in the dark. Almost eleven years ago, I had an eagerly awaited son. We all know we await them eagerly.
And then something happened…
I remember holding him in my arms. His eyes were wide open and I looked into his eyes and there was a pure soul, there was a spirit and I could look right into it. And I had so many plans and dreams for him.
And I remember even then thinking that many years before my father had held me in his arms the same way and his father before that. And I said a prayer for the continuity of life and made my plans and we took this little boy home, Dov Binyamin, and loved him.
And then something happened, when he was about 18 months, he stopped answering to his name.
And then he stopped running to greet us at the door. And he would just be caught looking at the motes of dust in the sunlight through the window. And it really seemed as though, before our eyes, he had disappeared. It was as if someone had come into our house in the middle of the night, kidnapped our son, taken his mind and his personality and left his body behind.
And that's the thing about autism…it's like you have you child and yet you don't. And we didn't know what was wrong. We went to this place, we went to that place and finally I remember we went to a doctor, he said well this is autism.
We said, "What is that? What do we do?" And the doctor said, "Oh, there's really nothing you can do. Just hold onto each other and cry and then get on with your lives. I don't like to give false hope."
Those were dark days. I think many parents in the room tonight have had a similar experience. We would just look at the videotape over and over trying to find out when was the moment when the smile we knew disappeared. For six months, I just would go into my office, close the door, and put my head on the desk. I can't believe I wasn't fired!
And I remember once going out to dinner on Valentine's Day with my wife and thinking are we ever going to have a normal conversation that isn't about Dov and autism again? And realizing five minutes into dinner that we were never going to have a normal conversation again..
You can't hurry science…
We looked everywhere. We looked to science. We went to Stanford. We went to UCLA. We went everywhere.
We wondered, "What was science doing?" Well it's hard to believe for a disease that effects over 500,000 kids under 18, but at that time, there were maybe 12 scientists in the entire country working on autism.
You have to know why this is because it's important, and it's important for everything Keshet does. The reason is, our hearts go out to sick children. They're sad, they're vulnerable, they need us.
But the fact is, adults fund diseases that adults get. They fund breast cancer, lung cancer, prostate cancer, and Alzheimer's. But children don't vote, they don't lobby, they don't raise money, and many of our children don't have any voice at all.
And their parents are very, very busy taking care of them, in effect, becoming doctors, therapists, chauffeurs, and experts in this and that. And without the help of the entire community of people like you here, the pot never gets bigger, and the work never gets done.
This seemed unacceptable to us then. We were parents. We weren't experts. But we thought we can do something about it. So we gathered a group of people together, and we thought we'll start an organization, and we'll be aggressive, we'll be practical, and we'll try and hurry science. And people even with best intentions came to us and said, well that's good but you know you can't hurry science.
Well, I make movies for a living, one of my friends builds houses for a living, another had a small manufacturing company. We all knew that you actually can put extra guys on the job, add more shifts, work longer hours, spend more money and you can hurry along pretty much anything. So that's what we decided to do.
That's Not The Way It's Done…
So, we started to raise money. I remember I wrote letters to my friends, I said finally, there's something you can do. The first time I got a check for $1,000 I think, I wept. I couldn't believe it and we took the money and we paid a little extra. And we started to recruit more scientists, the best senior ones, the best younger ones.
And we decided to be practical, even if it meant going against the grain. So scientists said to us, "You know there's a genetic component in autism, and you'll get a lot further if you have DNA samples. If you have the DNA from families with more than one kid with autism - and there are many of them - you should collect it. We said, "Ah no, that sounds like a lot of work."
But, we went to Duke University and we needed a couple of hundred samples. Well, Duke had forty families. And we went to Iowa and they had twenty and we said, "Why don't you guys combine your families?" and they said, "Oh no, we don't to that, that's just not how it's done". We went to Stanford, and we said, "Stanford you've got a lot of families, but Columbia you have a fantastic lab with lots of machines, why don't you work together?" "It's not the way it's done", they said. We went to UCLA, and said, 'We will recruit families for your study if only you will make the DNA available to everyone, to every scientist who wants to get involved in autism research."
And the scientist at UCLA explained how science works. She said, "Now we'll take them when we can and after we've done our work, we'll hand them to the rest of the country. And it seemed like we would actually have to actually start a gene bank. So, we went, we went to the NIH, we said we're going to do this. And we sat in a little group of scientists, six scientists who did autism and we said we're going to start a gene bank.
And they said, and we're going to make it available to everyone. And they said, that's terrible. That's a terrible idea. We said well why? And they said, well you're going to use mothers to recruit, that's a good idea and you're going to get all the DNA. And you're going to give it to the first guy who has the biggest lab and they're going to find the genes for autism.
There's six of you but there's 500,000 of him
Yeah, that's a great idea that's exactly what we want to do. Well, I didn't get what was wrong with the idea. And he said, well then we're going to have to leave the field because we won't be able to get enough good graduate students, we won't be able to patent, we won't be able to publish. And I remember I was scared, I didn't know if this was this a bluff. I was just a Dad with like this idea that everybody should share and get along.
I had a picture of my son in my wallet and I took it out and I handed it to every scientist in that little circle and made them look at it. And I remember I said, "You know there's six of you but there's 500,000 of him. So, go in good health - someone else will get the Nobel Prize." That's the way we started our gene bank.
It's a good story because the result is that every one of those people stayed in the field and they're all working together. Our gene bank got 400 families in five years and it cost $6 million to do.
And now, if any researcher in the world wants to get into autism research and research autism genetics, they don't need to have $6 million. They only need a postage stamp. They send a request and we give them the information.
And it's just an example of a practical approach, what you can do if you try and solve problems the way you would solve them in your house, in your business.
As we worked at home, it became consuming. The table was covered with papers. I know one day I cleared the table off and decided to have dinner. And my daughter, I don't think she'd ever seen the table like that before. She came in and asked, "Is it Passover?" This was our life.
If you don't know somebody with autism now, you will…
We had to adjust some of our hopes but we always had hopes. It wasn't necessarily a high school graduation, or a softball league, and it wasn't like every day is a bad day. Some days are good days. A dry bed in the morning, a hug or a kiss given freely. A trip to the supermarket that doesn't end in disaster. These were triumphs every day, as important as any of the other triumphs we would have with our other children.
And Cure Autism Now is growing and has grown. When there were 12 scientists, now there are 300 scientists working in autism. When the federal government wasn't spending enough money, our families went to the library. They read the Ryan White Act, they read the Alzheimer's Act, they wrote a bill. It took them three years, they got it passed. The Pediatric Health Act of 2000 and put millions more into autism research.
When we hear the latest in Cerebral Palsy or stroke retraining, we recruit these scientists and get them to work in autism. And it's a different world. There is a robust feel where there was nothing. But, my son Dov is still autistic. And in fact, there are more children with autism than ever before. If you don't know somebody with autism, you will, because one in 250 children now are affected with autism.
And if you have the patience, you can be with him…
And its with sadness and joy both that we have watched his little brother and his little sister overtake him and go from being his little siblings to his helpers. And Dov does not talk, so if he wakes up in the middle of the night and he's crying, I don't know if he has a stomachache, a toothache or he just had a bad dream. He is handsome and he is cheerful, but I often think that Dov is in prison. And if you want to be with him, you have to get in prison too.
And I address this mostly to, it's true for the mothers, but it's even more true for the fathers, because the qualities that make us good in our work are being fast and loud and aggressive. And they are exactly not the qualities that help us get to know our children with disabilities. If you want to be with Dov, you have to get in prison too, you have to get very, very small and very slow and very soft. And if you have the patience to be there, you can be with him.
And you can, again, see in his eyes the same thing I saw in his eyes he was born. His nefesh, (soul) and intelligence - and he's in there. And it's hard for me to be in prison with him and I don't think it's easy for him to be in prison either.
You became a parent to every child that was…
Yesterday, I came here and I was in the airport and this thing happened to me. It's probably happened to all of us.
We're rushing in a train station or an airport, you're rushing to the plane and suddenly you hear a child cry. Someone else's child, they fell down, they're lost, you hear it and immediately you stop right there, your heart stops, and there's this instinct. You scan the crowd. Where is the child? Where is the mother? Suddenly, the mother comes rushing, picks up the child, the moment passes and you can go on.
But what happened in that moment, that natural moment, was your instinct kicked in, you became a parent to every child that was. If there had been no one else here, you would have picked this child up and you would have kept him safe until someone else could come and take care of him. And that is what everyone here does at Keshet and it is what's so magnificent.
What's your favorite commandment?
My daughter, who I wish went to a school as good as Solomon Schechter/Keshet, but still goes to a good Jewish school in LA. One day she asks, "What's your favorite commandment?" And I think this is too easy - she's setting me up. "It has to be honor your father and your mother". But it is my favorite because I have a different spin on it.
How do we really honor our parents the best? We honor them by being good parents. We honor them by being parents not just for our own children, but for every child. And if you remember the hope with which you looked into the eyes of you child when he was born, and that your parents looked into your eyes. And the commitment of work that you made to make that child have a good life and learn and be safe.
And if you remember the hope and work that your parents had for you, and you take that out into the world, then you have truly honored your mother and your father.
And this is also what Keshet is all about. Because in Keshet, what you're doing is, its not just helping the smartest children, the most musical, the ones who run fastest or draw the best, but you're helping the children who need hope the most. And it doesn't matter if there are many disabilities represented here, it doesn't matter if our children are 3 or if they're 30, if they can't say a word like my son. Or if they can't stop talking about the train station, and the train schedule, we want more for them.
And they deserve more and at Keshet, the whole community is involved with being parents for all of the community's children. And it's a wonderful thing because there's a saying that says, the prisoner can not free himself, but he can be freed. And this is what you're helping to do.
An Expert in Hope
In the beginning of my remarks, I told you the story about Adam who was so afraid in the dark. But Adam asked for a miracle and G-d said, in the dark, put your hands on the ground, look around you and you will find two rocks, two flints. Strike them together and make for yourself a light and a fire. And this is what Adam did.
And what does that story mean? It means, G-d has given us all of the tools to make miracles - he made us. And it is incumbent on us with the combination of hope and work Tikvah and Avodah, it is on us to make the miracles. And I believe that we absolutely can and we will.
Everything we've done at CAN - and we've grown from two people at the kitchen table to 40,000 people - no one was an expert. Everyone was just a person who had a desire, who had a belief that they could make a difference. And they have. I know I'm not an expert. But on the day that autism is cured, then maybe I can say, "All right now, I'm an expert."
But if it is that I ever get to say I'm an expert, it won't be because I'm an expert in science or politics or fund raising. It will be because over the years I have become an expert in hope.
It's just a question of how close that future is…
We are all engaged, at Cure Autism Now, at Keshet we are all engaged in taking the gifts that were given to us and making miracles happen. I can't tell you how honored I am to be here and to have met everyone I have met. And we live in an age of miracles and wonders. And when we talk about these things, they are not fantasy, they are the future and it's just a question of how close that future is.
And I still have the vision even though I have not heard my son use his natural voice to speak since he was two years old, I know that one day I will walk into his room in the morning. And I will say, "Good morning Dov, I love you". And I will hear him say in his voice, "I love you too".
This is as real to me as this podium, as this room, as the 1,500 spirits who are here tonight. And because I am now an expert in hope, I can say there's no such thing as false hope, there's only hope.
Thank you very much.
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