The Yachad Family Shabbaton which we just returned from was not at all eye-opening for us. We do not have to be reminded of the challenges and loneliness which often accompanies and exacerbates the lives of families with special needs children. We’ve been there and done that. We did not spend time wallowing in self-pity because who had the time. As we listened to what families had to say at the many sessions we attended, we became acutely aware of a common thread which many people felt. There was a deep resentment among some of the attendees in how they were ignored when it came to discussing their children with special needs. People would ask how is Shloimie doing at school; what’s new with Sara’s drama club? But rarely did anyone inquire as to the progress of a special needs child.
We realized that this phenomenon did not only apply in this situation.
It is not easy to give attention to every scenario in life. Nevertheless, we must force ourselves to do so. We remember when the mother of a good friend of Nina’s was admitted to the palliative care unit of a hospital. Palliative care is an amazing unit that caters to the comfort and needs of people who are terminally sick—giving them medication to relieve their pain while making their last days as best as they can be. With much trepidation and worry Nina visited. She came back with a great feeling of peace; the person that she had visited made Nina feel welcome. This woman had chosen to be in this unit knowing that there were no other treatments available to her. Surrounded in her room with pictures of her children and grandchildren, she spoke of the wonderful life that she had with her husband and was a warm and cordial hostess in this bizarre setting. We are sure that many did not visit because they were afraid.
How many of us hear of a person who is not well and pretend that we are not aware of the illness because it is too difficult to speak about. It is a misconception that most people do not want to talk about things. Give them the chance to make that decision; do not assume it in advance. Maybe this thought is a carry-over from the days of some of our parents who thought by not mentioning words they would stay away from us. People had the Big C or the curse; cancer is an illness and by not mentioning it we cannot assume that it will not affect someone that we know and love. The same rules apply to mental illness. We need to be more open with each other.
At the Shabbaton we listened to families discussing the loneliness which they felt. Stories were told of neighbors who never inquired or asked about one particular child. Other children were welcome in their homes, but the special needs child, who probably relished company more than any other, was excluded.
The community that we live in is exceptional. We have experienced the goodness of so many when we brought our daughter Naama to visit. However, it seems that every once in a while people need to be nudged slightly to remind them that this situation can apply to many different types of challenges. When in doubt, pick up the telephone—rarely will you be sorry.
By Rabbi Mordechai
and Nina Glick