Michelle K. Wolf is a special needs parent activist and non-profit professional who has worked in the governmental and non-profit sectors for the past 26 years. She blogs weekly at www.jewishjournal.com/jews_and_special_needs . You can follow her on Twitter @SpecialNeedsIma
After our Danny was diagnosed at 13 months with cerebral palsy and development delays, it felt like an emotional body-blow to read the words aloud from the Haggadah at Passover, “And for the fourth child, who knows not how to ask, thou shall begin for him, as it is said…”
Would Danny ever understand the meaning of the Exodus from Egypt? Was it cruel to withhold his beloved toast during the 8 days of Passover if he didn’t understand what was going on? And even more importantly, would he ever be able to ask us any questions?
When Danny was young, we used a picture system to help him express his needs and ideas; and so at mealtime, he would, for example, point to the picture of the juice or the Oreo cookie. As Passover approached, we would pull out a photo of matzah and try hard to convince Danny that this would be a tasty alternative to those Oreo cookies.
Although he wasn’t able to attend Jewish nursery school, he did go to a special needs once a week Sunday morning program at a local synagogue that wasn’t ours, and they always held a lively and tuneful-filled model seder, complete with a creative new story told by the Rabbi and hand-clapping music supplied by their friendly Cantor. In addition, we have a number of Israeli children’s videos at home, and one of those videos includes all the key songs from the seder. If Danny finds a movie he likes, he will watch it over and over, and over again, and gradually absorb every syllable, every nuance.
At the actual seder, he would sit for a while with the nursery school Haggadah that his big sister had made, and play with the various plastic toys and items that came with the “Ten Plagues” bag, and wait to hear his favorite songs. When he got bored, he would leave the table and play with toys.
Over the years, we began to invite other families raising children with special needs over to our home on the second night, and the evenings were half-seder, half-support group with the siblings having an extra good time together. The kids with special needs wandered in and out of the dining room, and everyone contributed based on their own abilities, such as the kids who are non-verbal autistics using their letter boards to make comments.
Two years ago, we celebrated Passover in Israel in a rented apartment in Jerusalem. We decided to follow the local custom of holding just one night of seder. I had schlepped along a Passover cookbook, a “Mr Matzo” craft project from years gone by, the nursery school Haggadah, and the plastic toy plagues. We ended our seder a little earlier than many of our neighbors, and could hear their songs and prayers wafting in through the windows, mostly in Hebrew, but in other languages too. The next night, Danny went over to the pile of Passover paraphernalia and said one word with a questioning tone: “Again?”
For children like Michelle’s son, the holidays can be a particularly stressful time, with new routines, food items, and customs. Taking the time to include these children (and adults) in our seders and other holiday rituals is an important part of Judaism, but also of opening the tent of the Jewish community to all who wish to enter it, even if that means taking a little extra time to include those who cannot ask.