Healthy Kids    

A dads story: raising an autistic child



What was it like 32 years ago, when you had a child who was diagnosed as autistic? Mark Storch shares the story of his daughter, Jennie, who had all the normal early childhood benchmarks: she walked on time; she babbled, but she was a wild child in constant motion.

 

At two Jennie went to a regular nursery school. The parents saw other children play, but Jennie would repeat words over and over again. And, according to Mark, she loved looking under doors all the time.

 

Then one day the nursery school teacher said that something was different with Jennie, and they recommended having her tested. That was the begining of a life-long search for answers.

 

Their search started with a visit to Columbia Presbyterian Hospital in New York. “They gave her Ritalin because of her hyperactivity,” said Mark. But Mark was discouraged because Jennie was progressively losing any speech she had.

 

The Storches enrolled Jeannie in the Children’s Annex in Ulster County when it first started its therapeutic nursery. The parents still had no diagnosis, but they took her off Ritalin. “It made her a zombie and nothing was happening,” says Mark

 

Mark has nothing but praise for the Children’s Annex. “They did a lot of research. They went to conferences and incorporated everything they leaned into their school program,” says Mark. 

 

At age four Jennie went to Valhalla for a three-day battery of tests. That was the first time that Jennie was diagnosed as autistic.

 

Although he was a school teacher Mark was discouraged because he didn’t know anything about autism. According to Mark, at that time the internet wasn’t the great research tool it is today. One of his first stops was the SUNY New Paltz library. He found many strange ideas in the few books available, like autism is caused by refrigerator moms... autistic kids were not getting enough parenting and that is why they withdraw.

 

Since Jennie wasn’t talking, they tried sign language. It was successful. Jennie could sign almost 100 words and could sign simple words like “want.”  Things were moving forward at the Annex, but at 14 Jennie aged out of the program.

 

“In 1991 there were no programs for autistic children in Ulster,” says Mark. The Storches approached the Devereux School in Red Hook, which was being built at that time. According to Mark the school was not prepared to deal with an autistic child, but they agreed to work with Jennie. Since the school was exclusively a residential program Jennie moved in. “While Jennie was at the school, the school was also learning about autism. They were starting from scratch,” says Mark.

 

While at the school Jennie’s signing skills were lost, but she thrived socially. She went to dances and lived in the dorm.

 

“I tell parents that they are going to have to decide if their child can live in the world or will need support for the rest of their lives,” says Mark. “Jennie needs help with everything, while other autistic kids may be able to obtain advanced degrees but have social issues to deal with.”

 

Mark suggests that if a child needs constant support, then the parents must start thinking about a residential program. “This is inevitability,” says Mark. “Think not only of today but think of the future.”

 

“Today we watch our daughter participate in therapeutic horseback riding, and she still loves to dance,” says Mark. Jennie lives in an ARC group home with other adults.