Posted: Wed, 07/16/2014 - 20:53 | The New Normal

Editor's Note: The name of the student written about below has been changed to protect his privacy.

Congratulations to Germany on winning the World Cup! For those full-hearted soccer fans, I hope you enjoyed the World Cup with all the attention and talk it garnered.

As for me, I started to lose interest when I could no longer watch the amazing Tim Howard, Team USA’s goalie, after the United States team lost. But I have to admit it was more than soccer itself that kept me glued to the televised USA matches. It was the amazing story of Tim Howard and how he played with such incredible prowess and timing while having Tourette syndrome, a neurological disorder characterized by involuntary tics and vocalizations and often the compulsive utterance of obscenities.

Posted: Mon, 07/14/2014 - 11:03 | The New Normal

The Ruderman Family Foundation announced today the five winners of the third annual Ruderman Prize in Inclusion. The Prize honors organizations worldwide who operate innovative programs and provide services that foster the full inclusion of people with disabilities in their local Jewish community.

Posted: Thu, 07/10/2014 - 14:43 | The New Normal

Part One

Time:  About 2245 on the Jewish calendar (3500 years ago.)
Place:  Hebron, Israel

Poor Dan!

Eleven of Jacob’s twelve sons had two or more children.  Benjamin had ten!

The twelfth son, Dan, had one son, Chushim, who was deaf.  Like many parents today, Dan might have worried, “What will be the future of my disabled child?”
 
The phrase “special needs child” hadn’t been invented yet.  On his own, Chushim, trying to be ordinary, would communicate “What’s going on?” when he didn’t understand a situation.

Posted: Wed, 07/09/2014 - 16:56 | The New Normal

Much ado was made last November, when the rare overlapping of Thanksgiving and Channukah captured the fascination of the Jewish (and much of the secular) world.    Some of us soaked up every ounce of the hype, while others found it overwhelming but when it was over a certain remorse was felt over the fact that it would be 57 years before the two holidays would overlap again (and thousands of years before the two days would overlap in their entirety).

Far less heralded or noticed than Thanksgivukkah has been the quirk in the Jewish calendar that will make this Sabbath (July 12) a "last time for a generation" occurrence.   In most years, Parshat Pinchas falls during the three weeks leading up to the 9th of Av which means that the assigned Haftarah is superseded for a special seasonal reading.

Posted: Fri, 07/04/2014 - 07:54 | The New Normal

So, Jewish life after Bar Mitzvah… It is hard to believe that there is life after Bar Mitzvah!  Since our son Avi was diagnosed with autism as a toddler, we have been very goal-driven.  What did he need to achieve his goals?  How can we maximize his potential?  What will his role be in the Jewish community, if any?  Until quite recently, this was very much a blur.  Some days the answers seemed clear; other days, we had no idea.  

As I wrote in a blog a few months back, Avi’s Bar Mitzvah was more than we could have ever imagined. 

Posted: Wed, 07/02/2014 - 06:59 | The New Normal

In our world of parenting a child with special needs, all you have to do is say “Holland” and everyone knows you are dealing with challenging days and lost dreams. As Emily Perl Kingsley expressed in her famous poem, having a child with special needs is like planning a trip to Italy only to land in Holland. There is a new language, new places to visit and new people to meet. Everything is different, but that does not mean it’s bad.

It has taken me a long time to be able to write that — and truly mean it. And while it is still painful to realize we are in "Holland," having a 3-year-old son with Fragile X Syndrome has inspired me to be a better mother and to become an advocate for his needs and the needs of other children and adults with this genetic disorder.