Tuesday, June 22, 2010

To Tell or Not to Tell

When I was a teenager and a college student (and still occasionally) my Dad would often cut out articles from the newspaper for me to read. I recall this warmly now…though I am quite certain that in my youth, like any self-respecting adolescent, I found it quite annoying. I think my Dad wanted to share important ideas with me … perhaps he thought that I would take them more seriously if they came from an expert who published them in a newspaper. Yesterday I read a blog posting that was too important to not share with you. I apologize, though only half-heartedly, for the length of this posting.

What follows is an inspiring story of thoughtful parenting around real challenges. It is a noteworthy model for talking with kids about hard issues of all sorts. This piece was originally posted on Deborah’s blog Puzzled. and reposted with the author’s permission on Tzeh Ulumad-HUC’s Continue Alumni Education Blog. My hope is that I am doing my part to share this very important story as widely as possible in our Jewish education community. 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.

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

Deborah Greene

“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.

Finally, one night as we all sat around the dinner table, Yael began to share something that she had done in occupational therapy that day. I decided that it was time to close my eyes and just “jump” into the autism conversation. I asked her if she knew why she needed OT or why she went to her social skills group or other therapies. She knew some of the reasons she went: “I need help making my muscles stronger & working on balance.” “I need extra help learning about how to make friends.” I told her that the reason she needed help with these & many other things is because she has something called autism. There~the word was out there. I took a deep breath, braced myself for the rest of the conversation and, together with Fred, we went forward at the dinner table. We provided a safe space, where no question was discouraged & where Yael and her sisters could talk openly & honestly. We did our best to ensure that at no point in the conversation would we treat autism as a scary or bad thing, something that was “wrong” or “broken” with Yael, nor was it something to be embarrassed about.

It’s hard to share the entire conversation, as it went on for quite some time and was full of lots & lots of Q & A. We read a wonderful book called, “My Best Friend Will” by Jamie Lowell & Tara Tuchel. In this true story Jamie, then a 5th grader, writes about her best friend Will, who has autism. The beauty of the book, besides its inspirational story of acceptance & friendship, is that Jamie helped her readers to see and understand those parts of Will that came from his autism & those parts that made him just like every other kid. She helped break down ideas about autism & perseveration, sensory issues, communication & emotions into kid-friendly, non-threatening topics that helped us in our conversation. Yael could relate to Will’s trouble with loud noises (“Oh, so that’s why I have to cover my ears when I flush the toilet!”), his perseveration (“That’s why sometimes an idea gets stuck in your head & you have so much trouble letting it go.”) his trouble reading social cues & more. Jamie also shared all of the things about Will that make him just like everybody else. Will loves to swim & play, he has a family that loves him, he has pets, he goes to school etc….

With the book read, the questions asked & answered (honestly & to the best of our ability) we ended our conversation, sent the kids to get ready for bed and with a still lingering sense of anxiety, asked one another, “How do you think that went?” “Do you think she understood it?” “Did we answer her questions & her sisters questions well enough?” In other words, the angst of going into this conversation was now replaced with the angst of coming out of the conversation.

Fast forward to the next morning. Yael came into the kitchen, walked over to me and said, “Mom, I think we had a really good conversation about autism last night & you know what? I like having autism because autism is a part of me & I like myself just the way I am. I like being different, it makes me special.” With tears in my eyes & a lump in my throat, I allowed myself to exhale for the first time in weeks.

I know this perception of herself & her autism may not last, or at the very least it may be challenged by the hardships that continually lie ahead for her. There will surely be times when she will wish to fit in with the crowd & won’t so readily celebrate being different. And though I pray she won’t, she may even come to view her autism as a curse, and not the gift she saw that morning. Our job as parents will be to continue to help her see her autism as simply a piece of what makes her Yael. We may not be able to protect her from how others will see it, but we believe that the more informed she is, the better she will be able to counter & stand up against labels and insults. Still, all that being said…that morning, in that moment, I felt that Yael’s dad & I had done good. We had gotten that first conversation right, and for that I was profoundly grateful.

1 comment:

  1. Joy - Both Ira and I are intimately connected to this amazing family. Thanks for posting this!