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.
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.
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”.
Some 70 talented innovators in their 20s and 30s from around the world ran a very different kind of marathon in Israel, as they competed to invent prototypes of tools for people with disabilities using cutting-edge digital and 3D-printing technology.
As a doctor who regularly diagnosed children who have autism, Ross was heartbroken to hear stories of social isolation from the families whose children she was treating. Because many children with autism become overstimulated in loud, crowded or new environments, parents often opt to keep the family home rather than experience fun family outings, like going to a ball game. But Dr. Ross knew that isolation didn't serve her patients with autism well in the long run.
Haley McCormick-Thompson, a young adult with a developmental disability, spends part of her day transporting senior residents of United Hebrew from their rooms to their various activities throughout the day. One of the more lighthearted activities is the sing-along, where she stands at the front of a crowded room leading a group of senior residents, helping them follow along with song sheets.
“I really care about the residents,” Haley said. “I like helping them if they’re sad and I like staying late and helping. I am always willing to do extra.”
Haley is modest. Staff say she is a rock star with the residents.