When one plans any large sit down event, one of the hardest and least favorite preparatory activities is “doing” the actual seating. Where a person sits and with whom can often determine whether he or she will have a joyous, meaningful experience or not. The person (or persons) assigned to arrange and organize the seating thus usually takes the job very seriously, but even with the best intentions, one can make a mistake and unintentionally cause someone to be unhappy or uncomfortable.
One of the most challenging and often unappreciated jobs in a shul is assigning the seats for the High Holidays. This past year in our shul, an error was made and a woman with her daughters who had purchased and reserved seats came in and discovered that there were no seats for them. With good reason, they were very upset and emotional. To make sure that this family did not feel unwelcome in our shul, I gave them my table and seats in the front, grabbed a chair from the first floor and brought it upstairs to the main sanctuary where I sat in the back of the shul.
When my daughter and granddaughter later came to shul, they each grabbed another chair and sat next to me by the door. Because of this seating mix-up, I had a chance to see our shul from a different angle. I usually have a front row seat when davening; this was the first time I had the vantage of seeing what was going on in the back of the shul. I noticed the young women trying to navigate davening with mindfulness while watching their children. I loved seeing the excitement of the little kids coming into the shul for shofar blowing and then leaving. While I was davening with my granddaughter, the woman sitting next to her kept looking over at her machzor. She told me that she didn’t speak or read Hebrew, so it was very hard for her to keep track of what prayer we were saying or singing. I thought about the fact that other people may be coming to shuls in our community who may need help following the davening and about what we can do to make them feel more comfortable.
In the end, I felt fortunate to have had this experience. It made me think about other events in our lives and how when we change our view, we might change our perspective.
I often think about how my husband and I have needed to change our perspective about parenting as we have gotten older and our children have grown into adults. When we were young parents, we saw our parental roles, not unlike most other people, as requiring us to be nurturing and loving with the task of educating and physically caring for all aspects of our children’s lives. With so many responsibilities came many physical, emotional and financial demands. I think that when we were young parents, all we could manage was to take one day at a time. We could not imagine a time when we would not feel exhausted and dream about getting a night of uninterrupted sleep.
My children are adults now and I have a different perspective on being a parent. My children are often educating me, they rarely wake me up at night, and I am no longer in charge of their daily needs. They are thinking, caring, funny, independent adults. My view and role as a parent, again like that of most people, changed naturally as our small children became teenagers, then moved out of our home and became grownups, and some began having children of their own.
My youngest son, Yosef, recently celebrated his 28th birthday. Our experience parenting Yosef has not been the same as our experience parenting our other children. The natural growth of both child and parent did not take place in this case the same way it did with the others. When Yosef was a baby, toddler and young child, he was different from my other children. He never slept through the night, he had multiple tantrums every day, and he was constantly escaping from our home. Eventually, when he was still very young, Yosef was diagnosed with pervasive developmental disorder (which, though we did not realize it at the time, was a nice way of saying autism.) Being a parent of a developmentally delayed child is extremely challenging, but the role of the parent is in some ways quite similar to that with other children, as you oversee all of the child’s physical, emotional, educational and financial needs. But this job, while not completely different, is much more intense, constant and demanding, and to succeed, you need to change and adjust from your preconceived parental expectations (and desires) to the realistic abilities and uniqueness of your special needs child.
Now that Yosef is an adult person with a disability, he needs to see himself as an adult; I, the parent, need to see him that way too. It is very confusing for him to be getting older and still be treated as a child. Yet he frequently does experience being treated as a child by many well-intentioned people and even professionals. Though he can’t articulate it clearly, what he wants, and what I want, is for others to see him as the adult that he is. He is not a child or a young teenager in an adult body; he, and many of his peers, are adults with a disability. It is different.
In our community, we have given the role of socializing with disabled people to our neuro-typical teenagers, and many of them are indeed fabulous at being inclusive of children and teens with disabilities. At this point, however, Yosef and his particular peer group have grown up, and the company of a dedicated 16-year-old is usually not what many of them may need anymore. Like others his age, Yosef needs to inhabit an adult world. He needs to be supported so he can work in either a paying job or in a volunteer capacity; he needs to socialize appropriately with people his own age; he needs to find his place in our religious community; and hopefully, live independently in a supportive apartment or group home.
When I am in my usual seat in my shul, I can see Yosef sitting near the window in the men’s section. I can keep an eye on him; I know if he goes out, when he comes back, and if he gets an aliyah or gelilah. From the view at my seat in the back of the shul, I could not see him at all. My view had changed. But that didn’t mean that I was not thinking about Yosef; I still knew he was okay.
I ask the members of our community to change their view and see the adults in our community with disabilities as adults. Think about a job in your business or company that a person with a disability may be able to do—here are some very capable workers. If there is an event in town—a tish, a concert, or a melave malka—please make sure to include the adults in our community with disabilities. We can each change our view and in this case, change the lives of some special adults in our community for the better.
Beth S. (Bassie) Taubes, RN, certified health, wellness, fitness, tai chi and yoga coach/teacher, is the owner of Wellness Motivations LLC in Teaneck. For over 30 years, she was a highly successful health care professional. In her current capacity, she motivates clients of all backgrounds, ages and health conditions to engage in improved self-care through nutritional counseling, personal fitness training, yoga practice, tai chi, and stress reduction techniques. She is also the rebbetzin of Congregation Zichron Mordechai in Teaneck. She can be reached at [email protected] or www.wellnessmotivationsbt.com.
