Parenting is no easy task, and, as we all know, the experience is filled with many ups and downs and highs and lows. Parenting a child with autism and special needs—as my wife and I do—is no different,
although I like to argue that the highs and lows can perhaps be a bit more extreme and challenging at times. This past Shabbat was certainly no exception.
Our family attended the Yachad Northeast Family Shabbaton in Stamford, Connecticut, this past weekend, as we are the parents of a teenage son with special needs, Zev, who is on the autism spectrum and currently attends Yachad’s Teaneck-based Mendel Balk Adult Community Center program on weekday evenings. Zev loves going on anything and everything associated with Yachad.
Speaking about lows and highs, our Yachad weekend away almost didn’t happen, as we found ourselves in the Hackensack University Medical Center emergency room for most of Friday afternoon due to the fact that a new medication Zev had started taking two weeks ago had caused him to experience terrible side effects. We stopped the medicine as soon as we figured out that Zev was having a toxic reaction to it, but it took awhile for the effects to dissipate, and we remained cautious and concerned.
It’s very difficult to see your normally happy son in this state, and perhaps even worse when he is not able to communicate properly how he is feeling. For most of Friday we thought there was no way we would make it from Teaneck to Stamford in time for the shabbaton and we didn’t even bother packing properly.
After getting the all-clear from the ER doctors we got home from the hospital at around 4 p.m., and my wife and I looked at each other and then did the next-most logical thing: we checked Waze to see how long our drive to Stamford would take. Blessedly, Waze reported that we would make it to Stamford with at least 30-45 minutes to spare. So we ran around the house doing a quick and incomplete packing job and jumped into the car and just made it. (Without Waze guiding us, I am 100 percent sure we would not have gone...nor made it before Shabbat.)
As we arrived for Kabbalat Shabbat and Maariv, Zev perked up and started smiling and was clearly so happy to be there (we haven’t seen him this happy for some time now, as the past few weeks and months have been quite challenging—for him and us), so this was certainly a welcome sign and feeling going into Shabbat.
The goals of the Yachad Family Shabbaton are for families with special needs like ours to learn and hear new ideas from a jam-packed program of leading speakers in the educational, parenting, psychological and legal arenas, to get to know and share our experiences with similar families, and to also have a good time while our children—those with special needs and their siblings—are cared for. We did all three.
My wife and I attended support sessions with other parents going through, or who have already gone through, similar challenges to those we are facing, and it was comforting to hear first-hand—although I know no one’s situation is ever exactly the same—that other families have successfully gone through almost the same behavioral challenges we face. In another session, we learned about new medicines and potential new treatments for Zev. In yet another we learned about the legal guardianship process in New Jersey, as we recently realized we will need to formally let the state of New Jersey know we will still be in charge of our son’s life after he turns 18.
The weekend was certainly educational and social, but I always like to try to find a bit of inspiration and I believe I found some of that as well. It started on Friday night when I heard longtime international Yachad director Jeff Lichtman cite the tale of the young man who brought a drink to his rebbe, and upon drinking it the rebbe smiled and warmly thanked the student for the wonderful-tasting drink. However, when the rebbe’s assistant tasted it, he spat it out in disgust and asked: “Why did you say it was sweet when it’s bitter?” “Ah,” said the rebbe, “you only tasted the water. I tasted the gift.”
Jeff related this story nicely to the experiences of Yachad’s families with special needs and our need to do our best to recognize the gifts our children bring to us, despite the often bitter and negative feelings and “tastes” we encounter along the way. It’s something I like to keep in mind always.
I also drew inspiration from hearing Rabbi Dr. Tzvi Hersh Weinreb, executive vice president emeritus of the OU, who recalled the powerful impression that Yachad’s members have made upon him over the years. He remembered that he had to miss one Yachad Shabbaton due to the sudden passing of his mother a decade ago, and when he came to the next Shabbaton a year later, no fewer than six Yachad members remembered that his mother passed away the year before and each asked him with great feeling and concern how he—a grandfather of many and even a great-grandfather at that point—was feeling.
An old friend of mine from Teaneck who was also at the Shabbaton related to me that his neurotypical (aka mainstream) teen son told him that the most powerful moment of the shabbaton for him was when everyone was sitting together on Friday night in the big hotel ballroom—families from across the religious spectrum and dealing with so many different types of physical and developmental challenges—enjoying and celebrating Shabbat together. My friend responded to his son, “You know, I think that’s the way Hashem wants it to be also.” I could only agree.
Looking forward to future Yachad Family Shabbatonim!
By Moshe Kinderlehrer, co-publisher of The Jewish Link of NJ