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March 1, 2011

Join me on an unplanned journey – Part I

http://www.jewishjournal.com/blog/item/join_me_on_an_unplanned_journey_part_i_20110301/

When I was in a public elementary school in the late 1960’s, one of my friends had a younger sister with Down’s Syndrome. She attended the same school but was in separate, self-contained classroom that we had no contact with except at lunchtime and recess. No one explained to us why she was so “weird”, as we said at the time. Most of my friends avoided having any contact with her whatsoever, and a few nasty kids would call her “retard”. I have to confess that I also found her strange, and was completely embarrassed to be seen talking to her, even for just a few minutes at lunchtime.

Flash forward to 1994, when our second child, a boy is born at Cedars-Sinai. The pregnancy is full-term; the delivery on Thanksgiving Day is long but not exceptional. Daniel Reuben Wolf weighs in at 7 lbs, 12 0z and is 19 inches long. His bris is held on schedule at our home, surrounded by friends, family, and many Jewish nursery school classmates of his big sister, Rachel. We adjust to having two children and getting by on a few hours of sleep and a lot of caffeine.

And then at two months, Danny gets a bad cold which moves quickly, very scary, into a high fever, a bad cough, trouble breathing…RSV pneumonia. He ends up staying five long nights in the Pediatric ICU at UCLA Hospital, hooked up to electronic leads, a pulse oxygen monitor on his tiny forefinger. I spend the day of Shabbat with Danny while my husband and daughter are saying the mishaberach (healing) prayer for him at shul. The chief resident of the floor is a young male doctor wearing a kippah who reassures me, saying that lots of babies have RSV and make a full recovery.

We take Danny home and notice that he’s not moving around much but during his well baby visits to the pediatricians, they tell us, “every baby develops at his or her own pace.”  Then, at six months, both he and his big sister come down the chicken pox, and nothing is ever the same. At ten months, he’s not crawling, only saying vowels and not able to hold a bottle. My mother babysits him for a few hours, and tells me, “Honey, something just isn’t right”. Boom. Suddenly, we find ourselves smack in the land of special needs.

A montage of those early years – a blur of appointments and assessments with doctors and therapists, checking out every book on developmental disabilities at the Beverly Hills Library, whispered worries at night after the kids are tucked in. One prominent neurologist says Danny just needs a little occupational and physical therapy and that by age 2, he will have caught up. Various diagnoses are discussed, discarded.  He is ultimately given a diagnosis of cerebral palsy/developmental delay, which the specialists find much too vague, but nothing else sticks.

Age 2 comes and goes without much progress. The word gets out among our friends in the Jewish community. People try to be comforting, to focus on the “catching up” aspect. A few friends who have been down this road give us pointers and a copy of “Welcome to Holland” by Emily Perl Kingsely, a poem which compares having a child with disabilities to planning a long-anticipated trip to Italy but inexplicitly ending up in Holland. The piece, which moved me to tears the first time I read it, ends with advice to accept your new reality because “if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things ...about Holland.” Okay, I say to myself, we will focus on the “tulips” of special needs and not worry about missing out on the gondolas in Venice. (Aside: by the fifth time I receive “Welcome to Holland” I am ready to throw up).

We redouble our efforts with more therapies, join list serves of parents, and spend hours working with Danny to teach him the most basic of movements, and sounds. As the months and years pass, it becomes clear to everyone that Danny is stuck in Holland. By this time, most of our friends have enrolled their second or third child in Jewish day schools. It dawns on me that during my entire graduate school education as a Jewish communal service professional, we never once discussed special needs or developmental disabilities.

Another second journey seeking out Jewish special needs programs and services has begun….

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