Reading between Minchah and Neilah on Yom Kippur, 5769, 10.09.08
Excerpts from an article in the Los Angeles Jewish Journal by Julie Gruenbaum Fax.
“You hear so much from autism organizations about what a horrible disease this is and how the parents have been robbed of their children, yada, yada, yada, and I suppose on a certain level that is true,” said Jacob, typing the words on a special keyboard that allows him to fully express his ideas. “But I refuse to live the rest of my life believing I am a defective human being. I have gifts and talents and challenges just like everyone else, and I have the same desire for connection and a need to be treated with dignity and respect.”
Jacob, 16 years old, is severely autistic and it takes great effort for him to regulate his movement and his behavior. He has very little spontaneous, relevant speech. At the same time, as you can tell from his quote above, he is intelligent, optimistic, spiritual, witty and more emotionally attuned than most people.
Jacob ‘speaks’ through a method called ‘facilitated communication,’ which means his mother, Elana, or another facilitator, holds a hard plastic card the size of a take-out menu with the standard typewriter keyboard printed on it. Elana supports Jacob's wrist and helps keep him focused and calm. She reads aloud as his finger skims over the board.
At this time of year, Jacob’s reality helps us reflect on whether the outer self is always a reflection of the inner one. His reality challenges us: Do we judge people by what we see? Do negative myths become self-fulfilling prophecies, or do we summon all our resources to shatter those myths, as Jacob and his family do every day? Are we defined by our limitations, or do we forgive our own shortcomings and like Jacob transcend our own obstacles?
Again listening to Jacob: “People with autism sometimes have a hard time organizing where their body is and being able to integrate various types of input, but when I am in God's presence, that is the one time I feel totally integrated with my ears and eyes and heart and touch and body, all in the same place. For me, praying or studying the Torah portion or other Jewish texts is not primarily intellectual, it is something that I do to feel like my body and mind and emotions are all connected.”
Jacob wants to be a writer when he's an adult, and he also wants to teach Torah, which he studies with his father, Rabbi Bradley Artson.
Jacob describes his early life: “I was diagnosed at age 3, but I knew long before that that something was wrong with me, which was gradually depriving me of my ability to engage, and it terrified me because I had no idea what was happening. I remember being able to play with my wonderful Shira [his twin sister] for hours without getting totally overloaded with sensory stimuli, and also I was starting to talk. But I got stuck, and Shira took off.”
“I think that being autistic means that it is hard for me to control my body and my emotions, because I have such strong feelings, and I can't shut it down,” Jacob explained. After years of work, he can sink a basketball and get himself dressed. He has almost, but not quite, mastered writing his own name with a pencil. Typing has taught his brain and body to work together and improved his timing.
Jacob's life changed dramatically when he was 7. Until then he couldn't communicate well either through words or body language. The Artsons heard about a speech therapist in Whittier who taught non-verbal kids to type. Although they thought Jacob couldn't read, they decided to give it a try.
While the speech therapist supported his arm, Jacob correctly pointed to words and letters on a card. He identified the word ‘book.’ Asked what he watches, he pointed to the word ‘video.’ When the therapist asked him a question and he couldn't find the word he was looking for, he typed, ‘H-e-l-p m-e.’ That was the first moment that his parents knew he could read, write and think. It was a miracle for all of them.
“Facilitated communication has saved my life, because now that I can communicate
I can participate in the world as an equal,” Jacob said.
Opening the Gates
Excerpts from a speech by Jacob Artson at a Los Angeles conference, “Opening the Gates: Building Inclusive Congregations and Communities for Jews with Special Needs
Hi. My name is Jacob Artson and I am a person just like you.
I am part of a wonderful Jewish family, I go to our local public high school, where I am in mostly regular classes, I play sports, I love to travel, and I enjoy hanging out with my friends and girlfriend.
The only difference between you and me is that I have lots of labels attached to me, like nonverbal, severely autistic and developmentally disabled.
It is true that I have some challenges, but there are lots of myths and misconceptions about autism out there. Many purported experts claim that individuals with autism are not interested in socializing. This is totally ridiculous. I love people, but my movement disorder constantly interferes with my efforts to interact. I cannot start and stop and switch my thinking or emotions or actions at the right time. This can make being in a big group very lonely and that is the worst thing about autism.
Another myth is that the majority of kids with autism are mentally retarded. In fact, our bodies are totally disorganized but our cognitive skills are intact and our minds are hungry for knowledge.
Every person alive is encumbered by challenges and blessed with gifts. I used to think that my ratio of challenges to gifts was higher than most, but now I realize that my challenges are just more obvious. I have learned that there are actually many positive aspects of autism. For example, I get a VIP pass at Disneyland and I get to kiss all the beautiful counselors at camp and pretend I don't know any better. On a serious note, not being able to speak means that you spend lots of time listening.
In fact, much of what I know I've learned from listening to conversations that other people didn't think I could hear, or listening through the wall to what the teacher in the next classroom was saying. People often ask me how I became such a good writer. The answer is that my inability to speak gives me lots of time to contemplate and imagine and also forces me to hear everyone's perspective and think about it because I cannot interrupt or monopolize the conversation like people who have oral speech.
I have found great support in God, Torah, and the Jewish community. The greatest single day of my life was my bar mitzvah because everyone there accepted and celebrated me for exactly who I am. At the end of the service, everyone came up on the bima for Adon Olam. I will carry in my mind and heart forever the picture of everyone there smiling at me.
So here is a final thought I would like to leave you with:
The best peers and aides I have had didn't have any special background. It doesn't actually take any training to be a leader who models inclusion. It just takes an attitude that all people are made in God's image and it is our job to find the part of God hidden in each person.
I used to get very upset and offended at the idea of being someone's mitzvah project or community service project. But now I see that I also have a role to play in helping create the messianic future. It is easy in our affluent society to become too dazzled by the material opportunities and the privileges that we have been born with. But I have had to struggle from the day I was born to do many things that other people take for granted. Because of that, I have experienced God's love in a way most children have not. So maybe we are each other's mitzvah project because I can help them see the glories of the world that they have never noticed, and they can teach me how to look like other kids. All in all, who is getting a greater benefit? In the end, together we bring God's glory to all of humanity.
For full articles and photos of Jacob and his family go to
http://www.jewishjournal.com/high_holy_days/article/opening_the_gates_20081001/