A Grandparent’s Story
By Stephen M. Flatow
Growing up we are taught that if one is good, two is even better. A double portion of dessert, two-for-one ticket prices, two scoops of ice cream---you get the message. But what happens when that double portion is an extra chromosome? The answer is simple but very complicated at the same time: it’s called Down’s Syndrome.
I think back to when my grandson Netanel was born with that extra chromosome. I was furious. Less than ten years earlier our entire family had been thrown into turmoil when our daughter Alisa was murdered by terrorists at the age of twenty. After hearing Netanel’s diagnosis, I slammed my hand on the kitchen counter and I screamed, “Enough! This is not right, I’m done! Why should my children have to cope with this? Where is God’s mercy and compassion?!”
That night was Yom Kippur. I had a full dinner and stayed home from synagogue. God, I thought, should be asking my children for forgiveness, and if He wanted to find me that night, well, He could do so at my home. And for the first time in sixty years, I did not attend Yom Kippur services.
But twenty-five hours later I was at peace with myself and the Almighty, and I began to appreciate that life is more than a game of Monopoly and God does not give out “get out of jail free” cards. Meanwhile, Netanel was struggling to eat and breathe, as a heart defect interfered with his oxygen absorption. That was soon fixed by the hands of a surgeon with God-given skills. The road my daughter and her family were traveling on with Netanel was filled with potholes and curves.
As Netanel started school, it was obvious that the public school system was not going to be successful with him. Distressingly, the other students in his class were taking up too much of his teacher’s time with behavioral issues that Netanel would mimic when he returned home. He certainly was not getting the individualized attention that he needed. We all breathed a sigh of relief when Netanel enrolled in SINAI at Rosenbaum Yeshiva of Northern Jersey, and we quickly banished the word “retarded” from our vocabulary. SINAI helped us to recognize that Netanel certainly was not stupid---he just had Down’s Syndrome. Within several weeks of his starting at SINAI, even I could see the difference in him. From week to week, from month to month, and now from year to year, it’s easy to see he’s learning, growing---thriving in a warm and caring environment.
The fact of the matter is that SINAI helped us all to see the potential and beauty of a child with disabilities, or as I like to say, “different abilities.” Over time we learned to lean in to Netanel’s differences, to appreciate that they are part of what makes him the amazing kid he is. I know that living with Netanel is no cake walk for his parents. He can be a button-pusher, and when he is in a mood, I want to head for the hills—well, in fact I do head for the hills—but I love spending time with him, and I can’t believe how far he has come, how we all underestimated what he could achieve. Today he is an enthusiastic--and quite popular--high school student at SINAI at TABC, and I couldn’t be prouder of him.
I remember how, almost forty years ago, the community came together to open SINAI at Hebrew Youth Academy (now known as Joseph Kushner Hebrew Academy), creating a place for the children who had nowhere else to turn. At that time, I had no idea that one of my family would one day be a student. All I can say today is Thank God there is a SINAI---and that my beautiful, intelligent, and very special grandson can benefit from it.
Stephen M. Flatow is a vice president of the Religious Zionists of America, an attorney in New Jersey and the father of Alisa Flatow, who was murdered in an Iranian-sponsored Palestinian terrorist attack in 1995. His grandson Netanel is his pride and joy.