My son Daniel is a 31-year-old young man with autism.
Like many families with an autistic member, our lives have – ahem – been interesting, distinctive, contained a certain element of surprise and provided a trail of unanticipated sweetness.
I’ll take just one category of our life experiences as an example: our stream of decades-long dealings with various local police over the years. Our first and early encounter was in downtown Wanchai, Hong Kong (where Daniel was born and where there was scant English at the time when he bolted out of the third floor of his preschool, down into the busy streets filled with Cantonese-only speakers, English fluency a non-issue). And then there was the encounter with the park rangers on horseback in New Mexico (US) where Daniel somehow managed to disappear, poof, into the wilds while holding both his parents’ hands. There have also been encounters with the police in various Connecticut cities and towns when he went to the dentist not quietly, or decided to pick up his bike and take off miles and miles through back roads to the nearest candy store and where, when he was finally apprehended by the local barrack officers and escorted to the back seat of the police car, he casually leaned over towards the front of the vehicle and matter-of-factly (a familiar exercise by now) inquired with his limited repertoire of language as to whether either of the officers sitting there had a “wet wipe” to clean off his sticky sugar-coated fingers. There were also various times he was removed from the baked goods section of Stop n’ Shop, coated from head to foot in confectioner’s sugar following his amazingly thorough and swift consumption of much of the bakery’s inventory.
I could go on and on describing these experiences, unusual for most but not so for many other families living with autism. But the main point here is — today and going forward.
Through all that I describe and more, there have been several constants that Daniel has always reveled in and been able to follow appropriately (with assistance). And now, as Daniel and his family ages we are trying to incorporate these “life supports” into his life, as our own strength and mortality become increasingly frail and vulnerable.
The reality for our children and their families is that the clock is ticking – time and age are non-negotiable, inevitable. Daniel’s family cannot continue to wear the many hats that it has during his childhood, adolescence and now young adulthood. We would like Daniel to have friends, relationships and connections with an extended circle of people and within the community. Where to start?
Over the years, despite his challenges and limited language and general skills, Daniel has always enjoyed and literally soared when he observed religious/Jewish rituals with others. The non-judgmental social environment combined with a predictable format has always been and remains until today an enormously powerful and precious experience.
We recently, with the assistance of local Clergy, religious educators and synagogue leaders, set up a “Shabbat Friend” program where Daniel is accompanied by a community member to the service and “Oneg” reception following. So far, so good — it is fast becoming a highlight of his week. The annual schedule includes holidays as well as regular Friday evening Shabbats and usually some music — the icing on the cake. (And as earlier described, Daniel is definitely a cake person!).
I realize that this is likely not the first collaboration of this type, and I hope to see our program expand from this inaugural phase. I hope too that other congregations of all religions continue to open their doors, hearts and minds so that they can be welcome our children with differences who especially need this kind of sweet experience, communal exposure and value it so.
To contact Marian Dar, email firstname.lastname@example.org.