What do we tell the children? Autism in a Jewish Family

All too often we as individuals and as community leaders battle with expectations of perfection that can create unreasonable pressure for our children and families. While we understand that the perfect Jewish family is a myth, there is often silence when it comes to speaking about the challenges we face. This week, we have the pleasure of reposting a piece by Deborah Greene wife of Rabbi Fred Greene (HUC-JIR  NY 2001) While in general it is our practice to post the words of our alumni directly, we felt that Deborah’s piece spoke to a family reality that she and Fred share together.

Fred Greene

What follows is a tremendously inspiring story of strong thoughtful parenting. It is a wonderful model for talking with kids about hard issues of all sorts. It is hard to overestimate the power for our communities of seeing that they are not alone in their struggles. This piece was orginally posted on Deborah’s blog Puzzled.

Deborah Greene

To Tell or Not To Tell

“We, the one’s who are challenged, need to be heard. To be seen not as a disability, but as a person who has, and will continue to bloom. To be seen not only as a handicap, but as a well intact human being.” (Robert M. Hensel)

The summer we told Yael about her autism. Her sister Leora by her side.

As parents, we are faced with many difficult conversations. Amongst them, there is the “don’t do drugs” talk, the “don’t drink & drive” talk and of course there is the good old-fashioned, highly anticipated “birds & bees” conversation. Most of us spend a good amount of time thinking about how to get these conversations just right. We look for the best books, ask friends how they handled these conversations with their own children & seek out guidance from trusted sources. If you are the parent of a child with autism, you also need to tackle the “telling my child that they have a lifelong developmental disability” conversation. I can promise you that this particular conversation is one of the most intimidating, nerve-wracking & anxiety inducing conversations of all.

You see, this particular conversation will help to shape how your child will see himself or herself for years to come. You want to impart the knowledge of who they are and why they are different without making them feel that their disability defines them. You want to help them understand their struggles, without making them feel limited in their capabilities. You want them to see themselves as “differently-abled” and not “disabled.” In addition, you want to help to ensure that they themselves won’t use their autism as an excuse, a “get out of jail free card” so to speak.

Then there are the other components of this conversation. When do I tell my child? How will I know when the time is right for them to handle this information? How much or how little do I share? Do I share this information with their friends & classmates? The list goes on & on.

Fred I began to think about having this conversation with Yael towards the end of her 2nd grade year. We knew that upon entering third grade, the social gap would widen significantly. We were already seeing her friends surpass her both socially & emotionally. What were seen as “little quirks” by her peers before, were now being seen as “strange” or “weird.” We also felt that it was becoming important to try & help her understand why she always had a teacher aid, went to social skills groups & needed occupational & other therapies. I guess you can say that we felt as if we wanted to help create a picture out of the many different puzzle pieces that made up her daily life.

So, I talked with her therapists, began looking for good books and hit the web in search of a “how to guide” to having this conversation with Yael. We waited until the 2nd grade school year was over. Then, we waited for the perfect opportunity, believing we would know it when we saw it. Alas, the picture perfect moment never seemed to present itself. There always seemed to be something about it that we felt wasn’t “quite right.” Truth be told I think we knew that we were going to change our daughter’s perception of herself, and her sister’s perceptions as well, for the rest of her life. No matter how the conversation went, she would now know herself not simply as a person, but a person with autism and that scared the heck out of us. Read the rest of this entry »