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Posts Tagged ‘Asperger’s Syndrome/Autism’

Building an Inclusive Jewish Community

May 14, 2014 1 comment

Both as a rabbi and as a parent, it is important to me that Judaism be inclusive of people with special needs. Today, more and more, young people who have Autism, Aspergers, Down’s Syndrome, and other similar challenges are being encouraged to participate to their full potential in Jewish life!

Purely by coincidence, I’ve had the privilege twice in the last 2 months to speak on this topic – first at the annual convention of the Central Conference of American Rabbis, and then as part of a local Toronto panel organized by DANI. Both times, the topic was on the traditional Jewish law surrounding inclusion and on how to build the most inclusive Jewish community possible today.

For those who may be interested, here are the videos from those two events:

Thanks for watching!

 

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All Four Children: Standing Up for Autism

April 30, 2010 4 comments

Ever since my oldest son Rami was born six years ago, we have always known that he was a little different. When he was 3 months old, his self-imposed routine was so precise that we could predict – down to the minute – when he would nurse. When he was a toddler, we used to joke that, “Rami doesn’t have fun. He explores and studies, but no fun.” At age 2, he had a tantrum so severe that he broke a kitchen chair. And as a 3-year-old, he was the last kid in his class at school with separation anxiety (and that was the same when he was 4, and 5, and yesterday.) But he also makes up songs – songs that are really good and display incredible musical talent. He communicates at a level high above his age, he does math problems in his head, and he can chant the whole V’ahavta (and not just because he’s a rabbi’s kid!).

Rami is a little bit different. He is different because he has Asperger’s Syndrome, which is a form of high functioning Autism. And I have spent the last six years discovering that different can be beautiful.

This past week, as we all sat around our seder tables, we talked about four different types of children. Our tradition distinguishes between the Four Sons based on the types of questions that they are able to ask and the types of observations that they can make about their surroundings. And the seder teaches us to teach them differently based on those questions.

If you think about it, that’s really good educational theory. We are learning more and more that everyone learns differently; we all have different strengths and abilities. The Four Children teach us not to be afraid of those cognitive and learning differences, but instead to embrace them, to try to understand them, and to make use of them in the ways we teach our children and relate to others.

That is an especially important message today, because today is World Autism Awareness Day. Millions of people all over the world have Autism Spectrum Disorders; and 1 out of roughly every 110 children is now being diagnosed with it. (That means that statistically, there must be at least 20-25 people in our congregation.) As a society, we still have a long way to go to recognize the particular needs that people with Autism have, and the immense contributions that they can make.

Jacob Artson, a severely Autistic teenager whose father is a prominent Conservative rabbi, writes these words:

…at the age of 6… [m]y behavior was so awful I hated myself…. But there was one doctor who… smiled at me in a way that reflected her belief that I was a worthy person with the ability and desire to engage, and she waited the very long time it took for me to smile back. [1]

It is easy to misunderstand what is different. It is easy to pity those whose communication is impaired, or fear those whose behaviors are erratic or disruptive. It is much more difficult to try to understand the behaviors, to see the unique individual behind them.

In the Torah reading for this week, we see Moses begging for intimate knowledge of God’s nature. Confused and frustrated by the Golden Calf incident and by God’s harsh reaction, he cries out, “Let me behold your presence!” What he really means is, “Let me understand who you are!” And in response, God allows Moses a glimpse of God’s divine back – the best that a mortal can do – and through that glimpse Moses begins to gain understanding of God’s nature.

When we seek to understand someone, we can begin to create a relationship with them, to transcend disability and difference and find the Image of God that is buried within.

As Jacob Artson adds in another article, “The only difference between you and me is that I have lots of labels attached to me, like nonverbal, severely autistic, and developmentally disabled. [2]

17 year old Jacob – who cannot talk – is obviously insightful and wise beyond his years, and he is right that labels are unhelpful and sometimes counterproductive. They can overshadow some very positive qualities of people affected by Autism Spectrum Disorder.

Individuals with Autism are often extremely intelligent. They are full of passion and have meticulous attention to detail. They tend to be inherently spiritual, skilled, in the words of William Stillman, at “recognizing and deeply appreciating the beauty in everyone and everything about them.”[3] In fact, it might be argued that no less than Moses himself exhibits some of the qualities of High Functioning Autism: his deeply felt emotions (especially his anger), his propensity for structure and law, his highly developed sense of justice.

In Moses, we see these qualities as positive leadership traits. In fact, when we see people as individuals rather then syndromes, then we can learn to appreciate or even celebrate what we once found strange or disturbing.

Rabbi Joanne Heiligman relates the story of a Jewish person who was repeatedly embarrassed when his Autistic son would jump up and down as the Torah was brought out of the Ark. Finally someone came up to him and said, “Every week your son jumps and dances when the Torah comes out. We should all be so joyous at that moment.”

There is an old saying that “the Jews are just like everybody else, only more so.” This statement may really be true of people who have Autism, whose emotional responses are not naturally tempered by social constraints. They allow themselves to fully experience what it feels like to love, or fear, or enjoy, pr be in awe. Their sometimes strange behaviors are the result of these deeply human, deeply religious emotions.

One our congregants, a mother of a child with special needs, recently wrote to me. She spoke of her son’s difficulties attending religious school, and services, and camp. She spoke of the angst of watching him try – and so often fail – to make friends. She spoke of the joy of seeing his passion when he races to hug his sister. She said, it has been “A long journey, but it has been my most spiritual [journey], too.” I would say the same of my own son, who astonishes me, and humbles me, and frustrates me, and teaches me something new every day.

We have a great deal still to learn about Autism and the people if affects; but in the meantime, there is a great deal we can learn from them. Like the four children, all we have to do is ask our questions and listen to the answers.

On this World Autism Awareness Day, may we open ourselves up to think in new ways about people who have developmental challenges.

On this Passover, may we celebrate what is unique about all Four Children, and the children who don’t quite fit any of the molds.

And on this Shabbat, may we recognize the image of God in every person.

Amen


[1] Artson, Jacob. “Opening the Gates of Torah.” http://www.uscj.org/Opening_the_Gates_of7523.html
[2]
Artson, Jacob, “Encumbered and Blessed.”  http://www.uscj.org/Encumbered_and_Bless8286.html
[3]
Stillman, William. Demystifying the Autistic Experience.

Redefining Success

March 14, 2010 8 comments

My six-year-old son had a birthday party today… for the first time since he was 3.

Oh, we’ve celebrated his last 2 birthdays with him. We’ve taken him out dinner, gotten him presents. But he hasn’t been in a place where he could handle having a lot of friends come over. In fact, he wasn’t even really in a place where he had friends.

Rami has Asperger’s Syndrome, which is a form of high-functioning Autism. He is very high functioning – he makes eye contact, has high level conversations, and spends the majority of his day in a mainstream kindergarten classroom. If you met Rami, he would stike you as a very bright, very articulate six-year-old who talks a lot. But Rami also has difficulty with emotional self-regulation, sensory overload, unexpected changes, and making social connections. He has been known lock up in refusal mode when he doesn’t get his way, or when he is surprised by something (even something he likes). And even when he is not in tantrum mode, Rami is not quiet. His sensory issues make him want to fill silence with noise. He has trouble reading social situations (including things like when he is supposed to be calm). He moves around, fidgets and plays with things, asks a thousand questions, and disrupts things that he doesn’t particularly like. (And for all that we try to prevent it, our younger boys’ behavior often looks like Rami’s, since he is their big brother.)

Rami’s difficulties are such that we have not really been able to take him, or our other boys, to Shabbat services for about the last 3 years. (My being on the bima doesn’t help an already tough situation.) This has been incredibly painful for Shoshi and me, because Kabbalat Shabbat is so special to us. We met over leading services for our NFTY group; we have been camp songleaders together, and led services for youth groups and college groups; we have been a part of and/or founders of several small, creative, independent minyanim. We love Shabbat davenning, and not being able to share it with our family hurts in a very real way.

So last month was a good month. Over the course of the year, Rami has worked very hard on his flexibility, on dealing with situations that are beyond his control, on using his words when he is uncomfortable or confused. And last month, for the first time, he and his brother came to Shabbat services. They started in babysitting, and Shoshi brought each of them – individually – for about 10 minutes of the services. They sat and participated, and then went back to babysitting. We were almost in tears.

This certainly wasn’t my picture of what our family’s religious life would look like. I always assumed my kids would sit in the front row, singing their hearts out and breaking congregants’ hearts. But they had other plans. The amazing thing is that from where I’m sitting now, this looks an awful lot like success.  I’m not necessarily satisfied to stay right here, but I’m happy that we made it this far.

There is a parallel between that Shabbat service success and today’s birthday party success. For the first time, Rami invited over 5 friends. (He has 5 friends!) They played in the back yard, drew pictures together, ate cake and ice cream, and had a good time. It was a far cry from his brothers’ loud, high-energy parties, but for a kid who doesn’t even really ever have playdates, this was success.

Proverbs 22:6 reads, “Teach a child in the manner that is appropriate to him, and when he is old, he will not depart from it.” Jewish tradition understands that people learn in different ways, and have different abilities and needs. (In fact, this passage is one of the origins of the Pesach tradition of the Four Children, which encourages us to answer different children’s questions in different ways.) Sometimes we have to rethink the way we teach our kids so that they can be successful on their own terms. And sometimes we have to redefine what we mean by success.
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