I first met Golda and her husband in Camp HASC, a summer camp for children and adults with special needs. We were counselors, working 24/7 for several weeks, taking full responsibility for the care of our campers. We fed them, bathed them, entertained them and supported them. Looking back on that time, it felt like as counselors, we would be immune to the struggles of our campers and their families. We looked forward to “perfect” lives, that would fall in the boxes that our expectations set aside for us. While I experienced frustration at my own life detours, Golda provided me some fresh perspective on her own.
Golda’s eldest son Tzachi, has autism. He was born “perfectly” healthy, and as the months passed, he was engaged and sociable. By the time that he had turned one something was different. He stopped making eye contact. He stopped babbling. Though his doctor assured Golda that he was on track, she had a gut feeling that something was wrong. After getting his hearing tested, and working with speech therapists to try to re engage him with language, it was suggested that perhaps he needed a psych evaluation. At the time, Golda was in dental school, so her husband brought their son to the evaluation.
“I was still at school treating patients when I got a call from him. ‘We just finished and you need to sit down for this,’ he said. Then he told me, ‘Tzachi has autism.’ I asked him, ‘What does that mean?’ and he replied, ‘I don’t know. The psychologist had just said, ‘Your son has autism’ and then walked out of the room.’ That was the beginning of a very different life than we had anticipated.”
From that moment on they began a journey navigating the complicated social ramifications, service requirements and emotional pain that came with this new diagnosis. Initially, Golda felt like she was in mourning. “I felt like a failure. I had something, something that was tangible. That future and potential was there, and then it was gone. I had that kid. He was my kid who was going to go to yeshiva day school, and be on the baseball team, play with other kids, go to college and one day I woke up and that kid was gone. Then I would wake up every morning and someone else took his place. Someone who was much more difficult to raise.”
Like so many who initially wrestle with the burden of any kind of loss, Golda struggled to understand why this happened to her son and to her. “My husband and I met at Camp HASC, we helped children with special needs. In the back of your mind you think it’s not going to happen to you. But it did. It did happen to me, and when it did the first thing I did was blame myself. I told myself that I didn’t eat well enough when I was pregnant, or maybe I used my cell phone too much- I came up with a whole list (of what I can say now) are stupid reasons. I sifted through everything I ever did and tried to figure out what I did wrong. In the end of the day, as hard as it was to get there, I finally came to accept my new reality. Tzachi has autism, because Hashem wanted him to have autism. You can check off all the boxes and do everything right, but if Hashem chooses you, it’s your job to step up to the plate. I need to do the best job I can for the task that Hashem has given me. The idea that you’re going to wake up and everything is going to be fixed, does not exist.”
As Golda and her husband began to process what this diagnosis meant for their son and his future, they felt that they wanted to protect him the best way they knew how. “As much as we accepted the diagnosis, we tried to protect him. Hoping that maybe he would grow out of it. Maybe he would ‘lose the diagnosis’ as some kids do when they grow older. When someone has a sticker, a label, it’s very hard to shake it.” So in order to give Tzachi the privacy to grow and develop with the support of early intervention and many special therapies, the family chose to keep the diagnosis a secret within the family. “We explained his behavior as ‘being tired, cranky, long day, he’s shy, etc.’ For a long time, we took the criticism of others when Tzachi would have an autistic meltdown. People would tell us that we were bad parents because our kid was having, what appeared to them as, bad behavior. People would say we couldn’t control him or that he was spoiled or that we were young and dumb or just simply bad parents.”
The first time that Golda shared his diagnosis was to her cousin, in a moment of desperation. “I was hysterically crying and I told her that I felt like I needed to drop out of school. She told me, ‘I’m going to give you some tough love. Raising a child with special needs is very expensive. You can’t afford to drop out of dental school.’ As much as I wanted to be home for Tzachi, I knew I needed to stay in school, because in the long run, I knew I needed to be able to provide for him.” Golda explained to me that having a special needs child comes with a long term financial commitment, in order to ensure that they can be well cared for in the future. She said, “You hope for the best, and plan for the worst.” She knew that “just being home with him” during those early years would not be enough to secure a safe and bright future for him. She sacrificed the need that she had as a mother, to not leave his side in order to facilitate every moment in his life, in order to help facilitate his future.
The moments missed in those early years were very painful for Golda. “I graduated Dental school on a Friday. A lot of my friends hosted big parties, to celebrate their accomplishments and many years of hard work and sacrifice. I never wanted a party like that. That Friday night, Tzachi climbed on top of me, and lay there like a baby would; but instead of his head by my shoulder and feet by my hip, his feet now reached my knees. Holding him, I started to cry. It was so painful that I had missed so much of his infanthood. Even though I knew what I had done was best for Tzachi in the long run, it was so hard as a parent to get through that. In the moment I felt like I wasn’t being there for him, because there were so many things that I had missed. But I knew in my heart that I was there for him in the ways that he needed me the most.”
“Graduation, the parties- none of that felt like an accomplishment to me. My biggest accomplishment, is being Tzachi’s mom.”
With time, Golda and her husband came to the realization that in order to allow people to accept and embrace Tzachi the way they did, they needed to share Tzachi’s diagnosis. “We realized that maybe it was our responsibility to show people that disabilities come in all shapes and sizes, and even though some people appear “typical,” that doesn’t mean that they don’t have a disability. People need to know that Tzachi is very special and this is our life- every tantrum, every meltdown, and it’s not OK to judge people because you can’t always get the full measure of a situation on the surface.”
Aware that Tzachi processes the world in a different way than “typical” people, Golda has had to make social adjustments to compensate for her son’s needs. “His brain is wired differently, it’s hard for us to comprehend how he sees the world. That’s why we have to try to look through his eyes- we need to accommodate our lives for the way he experiences his environments. If I want to go to a bris- I can’t bring Tzachi, because I know he is going to get sensory overload from the tons of noise and tons of people. He will experience it all at once in a way that he can’t process it.” Always needing to be present for him, limits the abilities of who they can socialize with as a family and even where they can live. They go where life is best for Tzachi, often at the sacrifice of positive socialization for the rest of the family.
The one thing that the couple does focus on is their relationship. “Special needs parents have a significantly higher rate of divorce than other couples. There is just so much stress. Sometimes I find myself yelling, and while I’m yelling at my husband I tell him, ‘I’m not yelling at you, I just had a hard day so I’m yelling near you!’ He knows exactly how I feel, because he’s going through the same thing too.” She told me that they try to go out together on a date at least once a week, “We get coverage for the kids, and we do anything. Sometimes we’ll go out to dinner and walk back the 30 blocks just to have time to be together and talk. Sometimes it might be for just a quick cup of coffee and a few spins around the block. My marriage is a priority for me, and we invest time and money into each other, to keep our relationship strong.”
Golda spent so much time talking about how she had devoted her life to her family, I had to ask her, what was her sense of self like in the midst of all her other priorities? “Tzachi has taught me that over time that people can change. I have gained patience, understanding, acceptance, and empathy. He taught me things I would not have learned on my own. Day in and day out he gives me the opportunity to provide chesed for him, to be better, to teach others, to be calm and patient. When I think about who I am in the context of my life, I am the same Golda. But I am a more accepting, loving and giving person. I understand what it’s like to be isolated. I know what it’s like to be alone. I open up my home on shabbos and try and be as inclusive as I can, because I know what it’s like not to be included in the community because I have a special needs child. Tzachi has really formed me into the best version of myself.”