All in the Family
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From the time I was in high school, I planned to go into the medical field, maybe even become a doctor.
At the end of my second year of college, however, I was struggling with a difficult chemistry course, and I started asking myself, Ayala, why are you doing this?
My grandmother had always told me that I was a natural teacher, so I decided to forget about medicine and go into teaching. Having worked at Camp HASC during the summers and volunteered many hours for Yachad, the special-needs population was very dear to my heart, and I thought that special ed would be much more interesting than regular education. And so it was that I earned a master’s degree in special ed and began working as a teacher of children with disabilities.
I was very close with my grandmother, and I always enjoyed sitting at her kitchen table and catching up with her over a glass of juice and a plate of freshly cut melon. She would tell me how she and my grandfather, who died when I was three, had grown up in traditional families, and had begun their marriage in line with their upbringing: traditional, but not very observant. After their first son was born, they decided that they wanted to send him to yeshivah, but they didn’t want their home to be in conflict with what he would be learning in yeshivah, so in the 1950s — well before the baal teshuvah movement — my grandparents took the highly unpopular step of becoming frum.
Around that time, their second son, Norman, was born. Norman suffered from mental retardation, due to either oxygen deprivation at birth or genetic factors. (At the time, the field of medicine was not advanced enough to conclusively determine the cause of his condition.) Back then, kids who were born with disabilities were immediately institutionalized; doctors didn’t know what to do with them, and parents had no resources to draw upon. There was little available for Norman by way of educational programming or therapy.
But my grandparents refused to institutionalize Norman. He was their child, even if there was no one who could help them care for him. Norman started off in yeshivah, but that arrangement did not work, so my grandparents sent him to a public school that had a special class.
Although Norman never learned to read, write, or tell time, he was able to carry on basic conversation, and he maintained the same overall daily structure as other kids his age, which allowed him to feel relatively normal.
When Norman graduated from school, my grandfather wanted him to get a steady job. He had heard that the post office was hiring, and he thought Norman would make a great custodian. (Norman was always very neat, and good at following instructions.) The only problem was that at the time, the post office required all employees to pass a written exam — and, unlike today, there were no allowances made for persons with disabilities. Confident that Norman could do the job, my grandfather went to the testing site with him, and they both sat down to take the test. Norman’s paper remained blank, but my grandfather wrote Norman’s name on his own test and handed it in. That was the launch of Norman’s career at the post office.
The next challenge was how to get Norman to work each day. My grandparents lived in Brooklyn, while the post office where Norman worked was located in lower Manhattan, near the World Trade Center. For months, my grandfather accompanied Norman to work every day on the subway and then returned in the evening to pick him up. Eventually, when my grandfather felt that Norman was familiar enough with the route, he allowed him to go himself. Even so, for the next few weeks, he followed Norman surreptitiously on the subway to make sure that he found his way there and back.
My grandfather’s investment paid off, because Norman went on to work as a custodian at the post office for 32 years. His supervisors used to tell my grandmother that he was the best worker they had. He always showed up to work on time, always did his job, and never missed a day. He worked at the post office until September 11, 2001, when the Twin Towers adjacent to his post office collapsed. He somehow managed to escape Ground Zero and hitch a ride home from a colleague. To this day we aren’t exactly sure what happened, but he got home safely.
After that, the post office offered to transfer him to another location, but my grandmother didn’t want him to have to learn a new route. (By this time, my grandfather had passed away.) Norman ended up retiring and spending the next ten years helping my grandmother.
When I was a child, it didn’t really register with me that Norman was different. He was just part of our visits to my grandmother. Whenever we’d come — at least before September 11 — he’d talk about his job and how he was ready to retire. He had plenty of personality, and loved going to shul and hanging out with his “friends.” Even though he couldn’t read, he always knew how to follow along in the siddur and when to turn the pages.
When I got involved with Yachad, as a teenager, I tried to convince Norman to come with me to their events. I thought it would be good for him to meet people like himself, and my grandmother agreed. But Norman refused to come along; he didn’t think he belonged there. Because he had such a normal life — he held down a regular job, went to shul, schmoozed with his buddies — he never saw himself as different.
My grandmother was fascinated with my chosen field of special ed. “When Norman was growing up, we didn’t have any of these programs,” she would say wistfully. “No special schools, no camps, no recreational activities or clubs. Who knows how much more high functioning he could have been had we had access to these resources back then? Maybe he could even have learned to read.”
My grandmother lived until the ripe old age of 95. Thanks to Norman’s help and companionship, she was able to remain in her home, living with independence and dignity, until a year before her death. At that point, she realized that her days were numbered, and she decided to move into an assisted living facility with Norman, so that he’d have a place to call home after she passed on. He was the youngest person in the facility, but he found his niche there and made friends with the staff and residents.
Bubby died seven years ago, after I was married and had a little boy, whom she was able to get to know. My next child, a girl, was named for her. Four years after Bubby passed away, my third child, Joshua, was born. When he was still an infant, I noticed that he didn’t smile socially; he smiled only when we tickled him. He would also tighten up his whole body at times. When I mentioned this to my pediatrician and to colleagues at work, they told me that every child develops at his own pace.
At around Joshua’s first birthday, I noticed that he was not responding to his name, or pointing, or babbling. We took him for testing, and the results showed that he had hearing loss due to fluid in his ears, so we had tubes inserted. That did make a difference, but it wasn’t enough of a difference. When he was 18 months old, we took him to a neurologist and a developmental pediatrician. The diagnosis: autism.
By that point, we already knew what the diagnosis would be. We just needed confirmation.
Even so, I could have fought the diagnosis. I could have continued to believe that his lack of responsiveness was due to the hearing loss, and that it would take more time for him to become accustomed to hearing and understanding language. I could have told myself, as others told me, “Oh, he’s so young, all kids develop at different rates, and it’s too soon to make such a diagnosis.”
I could also have been angry, sad, bitter, and spiteful. And while I did experience those feelings at times, overall, my husband and I chose the path of acceptance and moved right into doing everything we could for Joshua. We set up therapies, looked into the best school programs, researched the insurance options, read all the literature on autism out there, found support groups and friends with autistic children, and got Joshua whatever equipment and toys could help him.
In hindsight, it was clear to me why I had switched tracks in college and opted for special ed. My professional training and experience made it much easier for me to handle Joshua. By the time he was born, I was closely familiar with the system, and I knew about the importance of early intervention, so I was quick to get him into treatment. I also knew how detrimental it is when parents are in denial about their children’s condition — which often happens — and thank G-d I was able to accept the diagnosis and tackle it head-on.
Not only was my professional knowledge helpful in handling Joshua, handling Joshua turned me into a better, more compassionate professional. At times, I need to have difficult conversations with parents and tell them what’s wrong with their child and what they have to do to help. In delivering these painful messages, I can empathize with what it feels like to hear these things about your child. I’ve been there.
But perhaps the best preparation I received for dealing with Joshua was my relationship with Bubby a”h. Bubby was the most positive person I ever met. She never complained about anything. No matter what situation she was in, she saw it as good. In fact, she often wondered aloud why G-d was so good to her, and what she had done to deserve the blessings in her life.
Unlike my grandmother, I am blessed to have a network of support in raising my special-needs child. Yet I often wish I could sit at her table and talk to her about Joshua. She could have encouraged me, shared stories with me, and given me insights, one mother to another. I often wonder what advice she would have given me.
The irony is that from the time I earned my degree in special ed, Bubby always looked to me as the expert in the field. What she never realized — and what I didn’t realize until Joshua was diagnosed — is that she was the true expert on parenting a child with special needs. Despite not having special schools, support groups, or trained professionals to work with, she and my grandfather figured it out. They took a boy with mental retardation and raised him to be an independently functioning adult who held down a job for decades, became financially stable, and lives a happy, fulfilling life. I wish I could tell her that it’s not the schools and the programs, but the drive of a parent that turns a child with special needs into a functioning, happy person. I also wish I could tell Bubby how much I look up to her as a role model.
Even though I can’t talk to her anymore, she and my grandfather continue to inspire me with their legacy. From them, I know that you do the right thing even if it’s not popular. I know how important it is to be positive and see the good in things. I know that you do whatever it takes to get your child what he needs, and that a parent is the best advocate for the child. You don’t need a special ed program or professional to tell you what your child needs — you’re the parent, and you know what’s right for your child.
Perhaps the most important message I absorbed from my grandparents is how much you can do for a person with special needs by giving him a normal life. It’s how you treat people that makes them feel different.
While I no longer have my grandparents to guide me, I do have another invaluable resource: my own mother. She may not have a special ed degree, nor does she have experience parenting a child with special needs, but having grown up with Norman, she possesses unique insight. I often forget how much Norman shaped her life, and how personal this challenge is for her.
When I turn to her for support, it’s so much more than a mother simply guiding her daughter. She is speaking to me not only as someone who truly wants what’s best for me, but as someone who grew up with a brother with special needs and watched her parents raise him.
My own children can attend sibling support groups and read plenty of books about children with special needs. But I am most comforted knowing that their own Savta is someone who can understand what they are going through and give them the support they need in a way that only someone who has been there can.
We don’t understand Hashem’s mysterious ways. But we do know that He sends the cure before the illness and gives us the tools we need to cope before He gives us the challenge. I know that everything I need in order to raise Joshua was infused into my blood by my grandmother and mother. Both of them shaped me into the person I am today and enabled me to be the best mom I can be — not only to my special child, but to all my precious children. My hope is that I can pass on to my children the strength, wisdom, and optimism they need to overcome any challenge that comes their way.
(Originally featured in Mishpacha, Issue 626)
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