It was the Chazon Ish’s custom that whenever a person with special needs walked into his office, his study, his home or his shul, he would stand up.
When asked about this custom, he would explain that God puts these special people in the world to give each of us an opportunity to do chesed – acts of kindness – and that such people are therefore direct messengers of God who deserve our respect.
How do you act when you encounter individuals with special needs? Do you stop to see if they need help? Do you stop to talk to their parents, who may be having a hard time? Do you tolerate their loud noises or inappropriate behaviors?
Or do you give them strange looks, talk about them, and wonder what their parents did wrong to deserve this? Do you feel uncomfortable in their presence, maybe even resenting it when they are in the same room or on the same plane or even, God forbid, at the same simcha as you?
I’m in the first category. I talk to them. I tolerate their inappropriate behaviors. I dress and even clean up after a thirteen-year-old autistic boy. But I assure you it is not because I have great midos or because there is anything special about me. You see, the boy I am talking about is my beautiful (or handsome, as he prefers to be called) son, Ari.
On August 18, Ari, my only son, became bar mitzvah and was called up to the Torah for his first aliyah. Ari is one of thousands of Jewish children who reach this milestone every year. But given the challenges of autism, we knew this event would require extensive planning and strategic preparations in order to pull it off in a way that would provide our son the Jewish experience we wanted for him.
Autism is a complex neurobiological disorder that usually lasts throughout a person’s lifetime. It’s a condition that affects one in every 150 people. Autism limits a person’s ability to communicate and relate to others and is associated with rigid routines and repetitive behaviors (such as obsessively arranging objects).
Symptoms can range from mild to severe. Ari is quite limited as a result of his autism. I never would have thought my son would not attend a Jewish school, but Ari needed a specialized program and it took many experts to help him make progress over the years.
As most readers know, a bar mitzvah is an occasion for great celebration in shul and many even have the custom of showering the bar mitzvah boy with candy. Friends and family come from far and near to take part in the simcha.
As we began planning for Ari’s great day, we realized his condition would pose a number of potential complications. One of the behavioral characteristics of autism is that a person can easily become overstimulated. Under certain conditions, even a seemingly insignificant event can cause an autistic child to become stimulated to the point that it takes great effort to calm him down.
The preparations for Ari’s bar mitzvah began in earnest eighteen months ago. Unless you’ve been exposed to a child with severe autism, you’ll have a difficult time understanding that it took many hundreds of hours just to teach Ari the brachas he would say upon being called to the Torah. Three close friends invested their time and energy and gave it all they had to prepare him for his special day.
Recognizing the potential for overstimulation with too many people in attendance, we thought it would be best for him to be called to the Torah on a weekday, with limited fanfare and attention. There were fewer than fifteen men gathered in shul for this special event and everything moved along as planned – until the time came for Ari to be called up for his first bracha on the Torah.
Ari was totally fascinated by the Torah scroll on the bima in front of him, recognizing it represented thousands of years of our heritage. He stood there completely overwhelmed while the small group waited patiently for him to say the bracha.
But the sight of the Torah and all it symbolized, even to someone with his limitations, proved to be too much stimulation for Ari. He went blank. All those countless hours of preparation became a memory too distant for him to grasp. Ari forgot every letter of the bracha and I had to say each one for him to repeat after me.