The New Normal

Everyone is welcome in The New Normal, a Jewish blog about disability. We're a source of information, inspiration and a challenge to received wisdom.

The Newest New Normal Of Rockets And Violence

Editor's Note: Yesterday we featured another voice from Israel, "Sleepless in Jerusalem." We appreciate Miriam and Beth bringing us their perspectives during this very hard time.

This summer, noises make me jumpy. “What if I miss a siren,” I wonder to myself, thinking of a friend who lives in a neighborhood where she depends on friends to SMS her when the siren blares. The loudspeakers just don’t work right.

What if I’m not near Akiva, our youngest who has special needs, when the siren blows? Happily, he’s coped, even one Saturday afternoon when the siren blew during B’nai Akiva, the local youth movement not known for its organization and planning.

Beth Steinberg

Sleepless In Jerusalem

Editor's Note: Miriam's reflection originally appeared on the Shutaf blog. We want to share the experiences living through the sirens for people with disabilities and will feature another voice from Jerusalem next week.

Parents of children, teens and adults with disabilities see the world through a very different prism – a unique prism of worry. We worry about different and more things than the rest of you do. The things that are obvious, attainable and easy for typical children can be huge obstacles for a child or young adult with special needs. Other 18-year-olds are moving on to a new stage in life – completing a gap year, going into the army or national service. At our house, we’re trying to get Vinnie to serve herself lunch.

This latest surreal situation in Israel is scary, especially for Israelis in the south. I can’t imagine. While Jerusalem has been relatively quiet, Vinnie was outdoors during one siren and the loud noise freaked her out. She’s been uptight since then, has had trouble falling asleep and bad dreams.

Miriam Avraham

New Camp Program Provides Supports For Boys Who Are Deaf

It was everywhere. Madrid, Paris, New York, Moscow - everyone was watching. I’m talking about the FIFA World Cup, of course. According to statistics, a full 1/9 of the planet watches the proceedings of this tournament. We’re talking here about hundreds of millions of people. From distant corners of the globe, people watch the same ball bouncing on the screen and cheer for their favorite teams.

Well, there's another global event coming up, though not on the scale of the World Cup. Next month, boys are flying in from Israel, from Russia, from Germany and from all over the United States to New York City. What for, you ask? To participate in a Jewish camp. For many of them, it will be their very first time living and experiencing Judaism among their peers.

I am proud to be behind the planning of this unique program for Jewish deaf boys between 8-16 years old.

Inspired By Tim Howard, Recalling An Inclusive Community

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.

Shelley Cohen

Ruderman Family Foundation Names Inclusion Award Winners

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.

Debra Cohen, JFS President, and Becky Cisneros at the opening of “Houstonians with Positive Exposure.” Courtesy of Meredith Sega

The “Ordinary Man” From The Tribe Of Dan: Inspired By Torah Portion Pinchas

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.

Rabbi Michael Levy

Parshat Pinchas: Inspiring Our Work in Suicide Prevention

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.

Efrem Epstein

Post Bar Mitzvah, Communal Role Grows For Boy With Disability

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. 

Avi puts on tefillin with his father. Courtesy of Michelle Steinhart

Fragile X Awareness: A Parent Speaks Out

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.

One Year Later: It's All About Lucy

Just over a year ago I wrote on this blog about my daughter, Lucy, who was leaving our local Jewish community day school after first grade. I have been planning this “one year later” blog post for quite some time – and yet, when I go to put pen to paper, I don’t know where to begin.

So I’ll start with this: Lucy is doing great. She adjusted quickly and easily to public school. She is happy and confident and more than a few adults who know her have commented that “she is a different kid”. 

Meredith Polsky
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