Bassie’s Story: Growing With Love

Bassie-1

This profile was brought to The Layers Project through a partnership with New Jersey Yachad.

I met Yosef 6 years ago, when I was working at New Jersey Yachad as a social work intern, working towards my MSW. We would have dinner together every Monday night, as part of a social skills program that I helped run for adults with developmental disabilities. Though Yosef was the youngest member of our program, he was always a delight to spend time with and I greatly enjoyed getting to know him over that year. Now, whenever I see him, he greets me like an old friend and the feeling is certainly mutual. When I sat down with the (incredible) New Jersey Yachad team, to discuss who they would recommend participating in The Layers Project, they suggested Yosef’s mother, Bassie (Beth) and I was thrilled to get the opportunity to learn about the woman who raised this wonderful young man.

I asked Bassie to start her story from the beginning. “We named our son Yosef Dov after the Rav, Rav Yosef Dov Soloveitchik, zt’l, who was both my father’s and my husband’s Rebbe and teacher. When we gave him that name, we knew it was a big name to give to a very small baby, but we did so with big thoughts and high expectations about who he could become. Our hopes were that he would do great things. He was named for a brilliant man who taught and significantly influenced several generations of people.” At first, Yosef seemed like a typical baby. He was sweet and beautiful, but he was not a good sleeper and would bang his head against the wall. It was a very difficult time for the family, as Bassie’s mother in law, a relatively young woman, was ill with lung cancer. The other children were a big help with their baby brother, and there “When he reached age two, we noticed that his language had not developed very much and at one point, my oldest daughter said to me, ‘It feels like Yosef has been a baby for a long time.’ I knew what she meant. There was not much change between 1 and 2 years of age in terms of development.” At that they began speech therapy to try to assist in his growth.

As Yosef grew, his behavior became more challenging for the family. “He was tantruming constantly, and any transitions in his schedule would cause another tantrum. He would constantly try to escape the house. He was like a mini Houdini; we would all be locked in the house and he would be outside. He would find a window to climb out of, and passers-by would sometimes knock on the door and say “Your son is on the roof.” The whole family felt the stress of managing Yosef’s behavior, and his siblings concern for his safety and happiness, and their parents’ stress, led them to do whatever they could to be helpful and supportive to Yosef. When Bassie found research that showed that a gluten and casein free diet might be helpful, they convened a family meeting to discuss whether all the children would be willing to sacrifice having those foods in the house. “We asked our other children if they would be OK no longer having pizza bagels, pasta, snacks, and many other things they were used to, and they said they would do anything to make life easier and better for Yosef. After some time, we began to see significant changes in his behavior.”

When I asked what Yosef’s autism has meant to his siblings, Bassie relayed this story. Several years ago, the entire family went to the Yachad Family Shabbaton, a weekend where the families of Yachad members go all together to spend shabbos at a wonderful retreat. Dr. Pelcovitz was running a siblings workshop (for siblings of special needs individuals). They were talking about the benefits of having a sibling with special needs. One of Bassie’s sons remarked, “If there was a pill for Yosef to take, that would make his autism go away, I would want him to take it.” His perspective was to hope to make Yosef’s life less challenging. In this discussion, two of her other children disagreed, suggesting that, “They would not want him to take it. Because then Yosef wouldn’t be himself, he wouldn’t be their brother.” They all truly love him for who he is, and want to support and love their brother.

Once Bassie was able to move on from her grief over the fact that Yosef would not be following a typical track, she felt like she was finally able to embrace all the unique and beautiful things that his autism gives him. “He loves others very deeply, and he has none of the barriers that typical people have. He’ll tell me, ‘I love you so much’ at any time, any day. He will randomly come up to me and just give me a kiss. Any person who comes into our house gets the warmest hello and when he sees people he knows on the street or in Shul he makes it clear that he is truly glad to see them. That is one of his gifts. People always tell me that they love spending time with Yosef. I ask them, ‘He is not exactly a great conversationalist, what do you love about him?’ And they say, ‘We just love being around him. He has such a happy energy.’ He is good-natured and never says anything negative about anybody or anything. There is nothing fake about him; he couldn’t even be fake if he wanted to.”

Yosef also has an incredible memory. “Any event that has happened in our family, we can ask him who was involved, where it happened, and when. He will tell you the year, the date, the time and location on anything that has happened to him or the family almost since his birth. He is the keeper of the family calendar.”

I asked Bassie what the future looked like for herself and for Yosef.  “Someone gave me very good advice when Yosef was young. ‘Don’t look forward, just look back and see how far you have come.’ I lived with that philosophy for a long time. I didn’t look towards where we were going; I was focusing on the progress we had made. It worked, but it’s not working anymore. What his future will be is very scary for me to think about. I don’t know what it will be like. He is the youngest child, and everyone else is now out of the house. My husband and I are not so young anymore. What will be in ten to fifteen years from now? Will we still be able to take care of him? We have to create a future for him that is not so dependent on us. It’s hard for us to know what that is going to look like. This is a big unknown. It is a scary time.” Yosef is a very independent person. Functionally competent- he can cook and take public transportation on his own. He would love to move out and live in an apartment, but living arrangements with some supervision that would be appropriate for Yosef are hard to come by. They are hoping that one day soon they can find a good match.

A big piece that plays into Yosef’s current life and future is his experience with New Jersey Yachad. Yosef started his tenure with Yachad when he was 8 or 9 years old and when he went away for the summer to the Yachad program at Camp Nesher. It was a great experience for him and much need respite for the family. He participating in events and shabbatonim as he grew older, and greatly enjoyed and benefitted from the Yachad experience.

“At this point in his experience with Yachad, the number one thing has been his friends and peer groups, the other Yachad members. As the participants like Yosef get older, their peers can’t really be other high school or college students. Don’t get me wrong, they love the company of students their own age – Yosef definitely does – but their friends for life are going to be each other.”

When Yosef was younger, he enjoyed many of the friendships that he made with community members his age who came to visit and spend time with Yosef. They would come over Shabbos afternoon and hang out in school. “As Yosef got older, his “typical” friends graduated from high school, went off to Israel and college, and moved on to the next stage of their lives. Some of them he never saw again. I am not being critical of these youngsters, as they certainly were well-meaning, and I do appreciate the time they spent with him, but this is just the reality of the position that Yosef is in. His long-term friendships are therefore going to be with people like himself. In Yachad, Yosef has friends who are just like him in this way. They can be with each other and maybe they won’t have amazing conversations, but they enjoy each other’s company. Yachad’s vocational program, and the Mendel Balk Yachad Community Center – these are the places where he makes his friends. Among his peers at Yachad, they do not “hang” together because they are “doing chessed” for each other, these are mutual friendships. All people enjoy having friends who are similar to themselves. The more we can do to facilitate experiences for Yosef with other young adults with disabilities, the fuller his life will be.”

Distracted by the passing of the family’s beloved grandmother and heartbroken over their loss, it took time to for Bassie and her husband to realize maybe Yosef needed some extra help. “Once she died, I started to notice that maybe there was something wrong with him beyond a speech deficit, and when I started to scream that there was really something wrong, we took him to a specialist who gave him the diagnosis of the 90’s called ‘PDD,’ or ‘Pervasive Development Disorder.’ My husband and I both heard it wrong, and thought it was ‘Pervasive Development Delay.’ We thus assumed that if we could give him so much therapy, time, attention and love, whatever this was we would be able to overcome it.” Bassie gave me a metaphor of a train. They thought he had missed the current train, but that eventually, he would make the next train to get to the “typical” station. At that time they thought that Yosef would be able one day to catch up developmentally with his age cohort.

Bassie described the moment that she realized that Yosef would not be typical. “When he was about 5, I would see “typical”5-year-olds, and then I would see Yosef, and I recognized the ocean of difference between their development. I realized then that this was not something that was going to go away. We were not going to be able to “therapize” or even “love” this condition out of him. My husband and I understood that Yosef has autism; this is who he is. It was a terrible time for me personally. I was still crying, but I threw myself into researching everything I could in order to try and find ways to make life better for him.”

Yosef also has the capacity to be attuned to deep spiritual messages. “He is also unusually spiritual. We picked up on that very early on in his life. The concept of Shabbos is an abstract concept, and yet being restricted on Shabbos about what he could and could not do was never a problem for him, and that was shocking to us. So was his willingness to put on his Tefillin daily – he has never missed a day – despite having certain sensory issues.

Yosef has conversations with God – like I am talking to you right now. He goes to Tashlich on Rosh HaShanah, and tells me, ‘I am going to throw away all my bad things that I have in my chest.’ I ask him, ‘Yosef, what bad things could you possibly have in your chest?’ He answers mainly by identifying some of his unusual behaviors. ‘I am going to throw away my jumping up and down, and that I talk to myself; I am going to tell Hashem I am sorry.’ To me, it is heartbreaking that he feels in any way negative about who he is and how Hashem made him. I tell him that Hashem loves him just the way he is; he smiles and says, ‘I know, Mom.’ But he goes to Tashlich anyhow. It breaks my heart every year. Those moments are the only times that he expresses in his way that he feels different than everyone else.

On Rosh Chodesh, every month, he works very hard on himself and in addition to wearing a special white shirt, he has something that he calls his ‘Rosh Chodesh behavior.’ For reasons which we are unsure about ourselves, he has on his own come to the conclusion that Rosh Chodesh is a special day – a day on which he wants to do something special for Hashem – and that he should, therefore, modify his behavior as best he can on this day. And so, once a month, he does not talk or sing aloud to himself, and he does not pace back and forth in public. It must require an immense amount of self-control (especially when it’s a two day Rosh Chodesh), and that is channeled from what he thinks God wants from him based on his own intimate relationship with Him. It makes me feel sad to watch him work so hard, and yet my family and I are in awe of his unique spiritual connection and devotion.”

Yosef also participates in New Jersey Yachad’s Vocational program. Yachad facilitates job placement, job coaching and counseling, to help participants learn how to function and succeed in the workplace. I have a special place in my heart for the  “Voc program” (as they call it) because I myself worked as a job coach on site with a Yachad member during my tenure as a social work intern at NJ Yachad. Through Yachad, Yosef this past year was placed at Amazon, where with the mentorship of an on-site coach, he is learning the skills required to function in a workplace. Bassie is looking forward to Yosef continuing to learn new life skills as he continues to grow within the program.

At the end of our conversation, I asked Bassie how she felt parenting Yosef has informed her as a person. “I’d like to think that I am more accepting of people than I was before. I have broadened my base of people that I’ve connected to and met. Difference is no longer a barrier to relationships. I don’t take things for granted. If I see a three-year-old in Dunkin Donuts talking to his mother, I think to myself, ‘Wow. That is amazing that a three-year-old can have a conversation with his mother.’ My own grandchildren- I watch their development. There isn’t a piece of it that I don’t marvel over. I take much less for granted.”

Bassie shared with me that the research that she did to help Yosef influenced her decision to shift her career. For many years Bassie was a nurse working with cancer patients, a very demanding and rewarding job. But through her research on how people’s diets can affect their health (that she began when looking to help Yosef), Bassie moved to open her own health and wellness practice, and became a certified Health Coach, fitness trainer and yoga instructor. Since creating her company, Wellness Motivations, she has helped people from all walks of life lose weight, become more active, decrease dependency on medication and lead healthier, more wholesome lives. Beth offers her clients on-going personal guidance and devoted support as she helps them in their quest to, as she says, “Eat Well, Move Well, Sleep Well and Be Well!” I truly enjoyed visiting her office and studio in Teaneck, and I think I might sneak in for a yoga class or two…

Bassie’s final message to me was all about love. “People have a lot of identities. Especially women. When they are younger they are someone’s daughter, sister, good friend. Then I was someone’s spouse, mom, nurse and now health coach, but I would say, that a big part of my identity, is that I am the mom of a child that has unique needs. He takes up so much of my heart, thought process and emotions. I am always thinking about Yosef, he is with me all the time. Myself, my husband, my children, his aunts, uncles, cousins we love him and support him, and he loves us back.”

Shira Lankin Sheps graduated from Hunter College School of Social Work with an MSW in clinical social work. After working in the clinical field, marketing and photojournalism, she decided to start The Layers Project to help break down stigma and promote healing within our Jewish community. She feels strongly about presenting women, who are so often shown as shallow characters or fully removed from Jewish media spaces, as three-dimensional individuals whose lives are full and rich with resilience. Shira is the founder, Publisher and CEO of The Layers Project Magazine.