Talking Sense - Volume 45, No 2, Summer 1999
On the first night of Passover, the youngest son or daughter asks: why is this night different from all other nights? The reply, taking many hours, is given by all who participate. The answer to Eleanore Rothenberg’s question about her son has never been found.
Within Jewish tradition, sons are highly valued. Therefore, if the firstborn is a boy there is a special feeling of joy and celebration. Another tradition emphasizes perfection, both physical and intellectual. So when our first child, Joshua, was born, my family was overjoyed at our good fortune, a perfect son. Soon, however, there was cause for concern.
By the time he was three or four months old, for example, we noticed that Joshua wasn’t rolling over as were other children his age. Indeed, during his first year all the landmarks were delayed. He didn’t sit, stand, walk or talk when other babies did.
Initially we didn’t know what to think since Joshua was our first child and we had nothing to compare his progress with. Moreover our doctors didn’t seem too concerned. Nevertheless, feeling pressured by family and friends, as well as our own insecurities, my husband and I started to seek out specialist help. That started a round of visits to hospitals and professionals and an endless number of tests, evaluations and assessments by paediatricians, psychologists and educators. I remember with particular pain the EEG’s that required fine pins to be placed under Josh’s scalp to get most accurate readings of his brain waves. He screamed in pain and fear. I cried.
By the time he was two, Josh had a brother, Andrew, and just before he turned four another brother, Benjamin, was born. But instead of experiencing the joys of new life in our home, we were feeling what the author Simon Olshansky describes as ‘ chronic sorrow’ - the terrible sadness when your child is developmentally disabled.
Josh finally began to develop speech, but people found it difficult to understand him. He also learned to walk, though with an awkward gait. Eventually he learned to feed himself and was toilet trained, all much later than ‘normal’. One thing that kept up our hopes was his bright-eyed interest in books we read to him. It told us that a little boy in there was trying to understand his world. He especially loved Christopher Robin and the Pooh stories; maybe he identified with Pooh, the bear of little brain, who was really very wise.
In those days there were no special education programmes, so my husband and I joined an organisation called ‘The New York Association for Brain Injured Children’. We were a group of parents who met in each others’ living rooms and worked on developing programmes, including legislation the State needed to pass so that children with special needs could receive special education services.
The legislation hammered out in the group ultimately became law. Some mothers organised an after school playgroup and hired an activities counsellor. We all contributed to a Resources Directory listing service providers ( doctors, dentists, lawyers, educators, schools, speech therapists, social workers etc ) with knowledge of and sensitivity to children with special needs .
No time to think
Most of the time I was so involved with the care of Josh and his two brothers that I didn’t have time to think. During those years Josh was both curious and hyperactive. His brother Andrew said in an essay when he applied to college: ‘ I never wanted toys, record players or the like because my brother broke everything.’
Everyone in our house was sleep deprived and anxious that something terrible might happen. Our son was on Ritalin, which helped control his hyperactivity. But when the medicine wore off, usually in the middle of the night, Josh would feel hungry, come downstairs and try to scramble some eggs. What he did instead was scramble the floor or singe his eyebrows.
Every now and then I would ask G-d : ‘ Why me? Why did I get this special boy? Why is my son different from all other sons? ‘ However that didn’t last very long. There was too much to do.
An important ritual
When he was 12 Josh started preparing for his Bar Mitzvah, the ritual ceremony when a boy approaching 13 begins to take responsibility for his actions and moral life. To mark the occasion, he reads a portion of the Torah in front of his elders, teachers ( rabbis), parents, family members and friends. Having successfully completed this reading he is welcomed into the community as an adult. Josh, like most children, was instructed by a rabbi, and also practised with his father.
By the time of his Bar Mitzvah he knew his lessons by heart. The rabbis thought this a miracle and arranged for Josh to read from the Torah before a large congregation at the Temple on the first day of the month, traditionally a special time. Unfortunately this was a disaster for Josh. He panicked and ran out of the sanctuary. It broke my heart since he had worked so hard and really knew his prayers well . He just couldn’t perform the ritual in front of so large a group.
Many events followed. Josh started to develop a curvature of the back which required him to wear a back brace for 23 hours each day. When he was 14 we enrolled him in a special school which meant he had to leave home in order to live at the boarding school. This was a hard decision, but experts said Josh would benefit if all the therapies he needed were in one place.
Josh learned much at the school and stayed there until his 18th birthday. I realised it was important for him to go to another setting where he could continue to learn and grow. We found a group home situation in a country setting which had a number of small cottages on a neat campus. There was a working farm and hothouse called the ‘ Enchanted Florist’ where flowers were grown and sold to visitors. Josh became involved in a therapeutic equestrian programme which he took to like a duck to water. He remained at this facility for some time.
A great achievement
One day Josh said that he wanted to try to read his portion of the Torah again as a mother’s day present for me and to mark his next ( 27th) birthday. I said I would help him. We went to see a rabbi who was eager to help and set up a schedule. An organisation for the Jewish Blind made a record player and tapes available so Josh could practise between visits to the rabbi.
Josh again learned his lessons well, this time through sheer determination. It was agreed that a Saturday afternoon , when only a smaller group of worshippers would be present, would be the best time for the Bar Mitzvah. I invited just a few close family and friends.
Josh placed the prayer shawl on his shoulders, the skull cap on his head and, with a little guidance, but not any real assistance, from the rabbi, read his portion in Hebrew. When he finished the young head rabbi reached for Josh to congratulate him for his achievement, whereupon Josh leaned his head on the rabbi’s chest and began to weep. So did most of the men in the congregation. It was a great moment for Josh, but also for me because I helped him get there. Mostly he did it because he wanted to. It was in him just waiting to come out.
Adult life
Josh now lives in a house in upstate New York with about six other young adults. They all work every day at a sheltered workshop or local stores. Josh is learning data entry on a computer, volunteers at a nursing home, participates in Special Olympics and has a lady love. He is a happy man.
Eleanore Rothenberg PhD., C.S.W., is President and founder of The Sibling Centre for Sisters & Brothers of the Disabled, Inc., a non-profit organisation offering support group and other services to siblings of disabled people.
