Hope is like peace. It is not a gift from God. It is a gift only we can give one another.
When a child is first diagnosed with some type of developmental disability as an infant or very young child, the whole family finds itself in smack in what I call “Special Needs Land”. Most parents view it initially as a short-term visit. “If we just step up all the therapies and add extra drills at home, he/she will be able to overcome this diagnosis,” is often the thinking. And in a minority of cases, the family is able to exit from Special Needs Land. But for the majority of families, that child is more likely to have that condition for the rest of his/her life.
Dealing with the daily grind in Special Needs Land takes its toll, and by the time the children are teens or young adults, parents are often burned out. Enter the first ever Yachad West Coast Shabbaton which took place this weekend at the Sheraton Agoura Hills, and which carved out a new road for families to travel on together for renewed energy and hope.
Yachad is the National Jewish Council for Disabilities, based in New York City, which promotes inclusion for children and adults with disabilities in the broader Jewish community, starting at age 8 through adulthood, and provides social, counseling, employment and many other programs, sponsored through the Orthodox Union.
The Family Shabbaton was a combination of a camp-like Shabbat with tons of lively singing and cheers, educational workshops with local and national experts for the parents, a fun/social program for the children/young adults with a disability, a sibling program for the older siblings and a day camp for the younger sibs. And of course, it being a Jewish event, there was a yummy, carb-centric meal almost every hour (kosher catering by Brenda).
Best of all, from my perspective, were the two volunteer co-counselors who were assigned to our son, Danny, to be with him during all the Yachad social/fun programs, at meals, and even to stay with him overnight in a hotel room, separate from us—whoo hoo! These two college-aged men flown in from New York City were stellar: caring, fun, and ready and willing to give him a lot of attention that allowed my husband and I some time off from our parental obligations. Both of the counselors had extensive experience with children and teens with special needs, and showed Danny a very good time.
The workshops for parents covered a wide range of topics, from medications to personal grooming, fostering social interactions and reducing stress in your home. During these parental workshops, a few themes kept emerging: parents need more accurate information and support from their congregations, whether it was Orthodox, Conservative, or Reform, siblings of the child with special needs also need extra support and understanding, and above all, there is huge need for more Jewish adult programs in vocational training/employment, residential, and relationships, including friendships, love and marriage. I was very impressed that Dr. Jeffrey Lichtman, the International Director of Yachad, had such a deep understanding of Special Needs Land, and the realities that our young adults will face as they strive to be part of the general community in terms of using public transportation, getting jobs, being as independent as possible, while also being part of the Jewish community.
Although I am certainly no fan of separating the men and women during religious services, the overall approach of the Shabbaton was very inclusive and open to the full spectrum of Jewish living experiences.
The parasha (Torah portion) of the weekend happened to be Shelach, the story of Moses sending in the spies into the land of Israel to seek out information about the characteristics of the land, both natural and human. Of the 12 spies sent, one from each tribe, only Joshua and Caleb were able to keep their hopes high, confident that by everyone working together, the Children of Israel would be able to slay the giants who inhabited the land. The other 10 spies lacked self-confidence and said that compared that to the “giants” they saw, "We appeared like grasshoppers in our eyes, and that's how we were in their eyes."
During the Yachad Family Shabbaton, we saw our children with special needs make new friends, have fun and be warmly welcomed as full members of the Jewish community. Yes, there were temper tantrums, breakdowns and spilled coffee, but, well, that’s just part of the terrain in Special Needs Land. Walking alongside other families on a road that none of us had planned to take is precisely what we need to keep our anxiety levels low and our hopes high. Kol HaKavod to Yachad for bringing their considerable resources to Los Angeles, and I hope to see many more families next year at the 2nd Family Shabbaton.
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