WHEN recent news stories detailed how two students were inappropriately given skin shocks at the Judge Rotenberg Education Center in Canton, my husband and I cringed in anticipation of the well-meaning question, "Do you think your son is OK at that place?"
We've heard it all before and our answer is still the same: Our son Andrew is not just OK at the Judge Rotenberg Center; he's never been better or safer than during his six years there.
Against the backdrop of headlines and news accounts that conjure up the mistaken images of "One Flew Over the Cuckoo's Nest" and electroconvulsive therapy, this is difficult to explain to people who cannot understand how even a mild skin shock therapy is more humane than what many of these kids are subjected to in psychiatric hospitals and other specialized schools.
So we tell them Andrew's story, which is also the story of hundreds of families who've found their way to the center after painful journeys bouncing from psychiatric wards to specialized schools and even protective custody (jail) with their children, who may be severely disabled, self-abusive, or physically aggressive. Their obvious suffering, and the suffering of their parents, is unimaginable.
Andrew's situation is complex. He requires special food and attention at mealtimes, has seizures daily, functions at a 3-year-old level, and had shown aggression toward others when even the smallest demands were made. As a toddler, Andrew was placed in early intervention and day programs, and we were trained in and used behavior modification.
By age 9, it was clear Andrew could not live safely at home, so we took the painful step toward placing him in a highly regarded residential school. Initially, Andrew did well with traditional treatment techniques; including behavior modification, restraint (as needed), and eventually drug therapy. But in time his behaviors became extremely dangerous - attacking staff, pulling hair, biting, tipping over furniture.
Almost once a week his violent outbursts resulted in a school staff member going to the emergency room.
His life became a mere existence as levels of powerful drugs were increased to control him. The staff who had once loved our funny, congenial son was now afraid of him and one day expelled him.
In the panic of this chaos we found the Judge Rotenberg Center.
The politicians and healthcare professionals now attacking skin shock therapy as "cruel" are misleading the public into thinking that there are better options for these children.
But when these "better options" don't work, where is the outrage about the years of noneffective treatment given those children who are so self-abusive that they have actually detached their own retinas from pounding their fists into their eyes, or those whose heads are misshapen from banging them repeatedly against walls and floors?
Where is the public outrage over how many children and young adults in Massachusetts spend their days in prolonged restraint or are so disabled from excessive psychotropic drugs they can barely stay awake?
We opted for the program at Judge Rotenberg Center because restraints and drugs did not work for Andrew and, frankly, we had run out of options. Andrew no longer injures people, is awake, alert, and happy. No longer is Andrew restrained for hours at a time, and he takes no psychotropic drugs. His infrequent aggressive behaviors are treated in a quick and controlled manner by a localized skin shock, and he is redirected to the task at hand. We have our old son back and he is functioning as a real person.
It has been demonstrated that skin shock therapy, added to a positive reward program, breaks the cycle of aggressive and self-abusive behavior. The students then begin to participate in academics, receive vocational training, live in community group homes, and are able to be part of their family again.
Unless and until a more effective therapy becomes available, skin shock therapy has proven to be the most effective alternative to physical and chemical restraints that have left so many of these children imprisoned in their own world. It is the least restrictive and most effective therapy for this small group of very difficult individuals, such as our son, and must continue to be an option.
Louisa and Robert Goldberg live in Greater Boston.
