A Christmas Story
December 25, 2007 by Kristina Chew, PhD
Filed under Health
Holiday greetings several times over to all.
A note about what follows: This post, which references a New York Times article on the JRC, is not exactly, the most “Christmas-y” of posts—but it is ultimately more about light than darkness.
Midway through a Christmas Eve party, Charlie—-who had had his fill of nah mai fan (sticky rice), a bit of prime rib, and a can of ginger ale (shared with Jim)—-sat on a chair by the front door and started crying and keening. My parents sat with him, I saw with him, Jim pulled on his coat and took Charlie on a walk. Holidays mean a break from routine and numerous indulgences—no school, visits with relatives, traveling far from home, lots too eat, lots and lots of different faces to see and voices to hear—and I think it all got to Charlie at that moment. The walk in fresh air seemed to help and Charlie concluded the evening by singing “We Wish You a Merry Christmas” into a tape recorder: A relative who just graduated from college is in the Peace Corps in Ghana, and her mother asked us all to record a Christmas message.
Another guest had mentioned to me that she knew a family, twenty-five-something years ago, who had an autistic child, and that the child was institutionalized. I looked over at Charlie, humming some other tune under his breath and trying to sneak a cookie adorned in frosting and sprinkles, and thought that the one gift I’m too grateful for is that Charlie, with all his needs and challenges, is with us. He lives with us, goes places with us, he is one of us.
Three years ago, Charlie’s self-injurious behaviors—-head-banging—were so frequent that Jim and I were not sure what would happen to him. There was talk of helmets. I went to see schools where one child, clad in a dull t-shirt and gray sweats, was wearing a helmet, and various other kinds of “protective gear,” and was basically being contained in a small area by three staff members. The woman from the office who was giving me a tour brushed back tears as we left the room. At this point, windows had been broken (included the one on the front door) in our house, dents made in the walls that had become holes after Charlie picked at them (Jim and I dragged furniture in front of them after the taped-up cardboard was pulled off—yet another moment when I knew interior decorating in our house was for the birds). I always traveled with an extra change of clothes for Charlie in my bag.
I didn’t know what was going to happen, to Charlie; to us.
In piecemeal and in ragtag fashion, with a lot of ABA with therapists who sat with Charlie when he cried and said to me “he’s been through so much,” with teachers who sat with him and taught him to tell them “I need a break!” and, when Charlie was having trouble, told me about how they must not be doing something right—that they needed to change their teaching methods—Charlie learned not to hit his head.
There is still a bump there in the center of his forehead. A doctor told me that, due to how many times he had hit it, the bump is there permanently. Just the other night Charlie and I were looking at photos from last summer and one flashed by with him smiling, and a scab on his forehead. Over the past year, there have been fewer and fewer instances of head-banging; the potential for this behavior will remain, I suspect, but we feel emboldened, grateful, and stronger knowing that there are ways to teach Charlie.
I must emphasize the word “grateful.” I know it is Christmas and I feel odd to be writing about this particular not so very joyful topic. It is the truth and the reality that, for families with autistic children, difficult things can happen every day: “Vacation” is a relative thing in life raising an autistic child, and sometimes the holidays—when expectations are high for good times and relaxing—-are the very times when something tough can occur. Today’s New York Times has an article entitled Parents Defend School’s Use of Shock Therapy about the Massachusetts Judge Rotenberg Center (JRC). The JRC uses electric shock transmitted by a device called the Graduated Electronic Decelerator (see a picture here) in aversion therapy for students who have self-injurious and other “challenging” behaviors. The New York Times article quotes one parent, Susan Handon of Jamaica, Queens, whose 20-year-old daughter, Crystal, has been at the JRC for four years. When Crystal was first at the JRC, she received some 200 shocks a month; last month she received four.
…. for state officials, many behavior experts and even some former Rotenberg parents, the shock therapy at the school represents a dangerous, outdated approach to severe behavioral problems, reminiscent of the electric shock helmets used on some autistic patients into the 1980s and now discredited.
They say Rotenberg does not use shock punishments only for dangerous self-mutilation, but rather for a wide variety of actions, including shouting profanities and spitting, which are known to be effectively treated with less extreme punishments. And critics of the school say that unlike the more widely known electroconvulsive therapy, which has been used successfully in cases of severe depression and is being used experimentally on severely autistic people, applying shock as a punishment is not widely supported by the scientific community.
“People don’t use it anymore because they don’t need to. It is not the standard of care. There are alternative procedures that do not involve aversives like electronic shock,” said William Pelham, a behavioral specialist and director of the Center for Children and Families at the State University of New York at Buffalo. “And I am not talking about drugs as an alternative. I am talking about other behavioral treatments.”
Still, the parents say the shocks are making a difference in their children’s lives as nothing else has. In 2006, after New York issued an immediate ban on electric shock for behavior modification, Ms. Handon was among the parents of more than 40 children who sued and won a court injunction to keep treatments going.
Handon notes that, once her daughter is too old for special education, she hopes to “keep her at home for good”: “‘“She loves that place………If she knows she is returning from vacation on a Monday, on Saturday she will pack her bags and start begging to go.’” We have been fortunate that Charlie has learned other ways to communicate his frustration and needs and more in other ways besides head-banging; I hope that the JRC is also teaching Handon’s daughter Crystal other ways to deal with her own needs to communicate when she leaves the center. But I agree with William Pelham: There are “other behavioral treatments”—there are ways to teach—a child and they do not involve the use of shock treatment. The New York Times quotes the JRC’s lawyer, Michael P. Flammia, who speaks in the “rhetoric of the last resort”:
“People want to believe positive interventions work even in the most extreme cases……If they did, that is all we would use. Many of these kids come in on massive dosages of antipsychotic drugs, so doped up that they are almost comatose. We get them off drugs and give their parents something very important: hope.”
Maybe my son’s head-banging was not the “most extreme” of cases. But I can you assure that, the night Jim and I looked at the jagged glass left on the window Charlie had kicked out and Jim knocked out the bits with a hammer, and I donned gloves and dropped them into the garbage, I was not so sure what alternatives were left. Hope came, not from someone proffering electroshock treatment, but from Charlie himself, from Charlie struggling not to swing his head and to “calm down” when he got upset and to ask “I want to go for a walk!” when another child started to cry in a high-pitched tone. Yes, Mr. Flammia, there is hope. I would prefer that my school district, and my family, spend $228,000 (a year’s tuition at the JRC), to teach autistic children.
I know this is not, on the surface, the most “Christmas-y” of posts, full of Yuletide cheer and references to Old Saint Nick. But reading the New York Times article about the JRC, I’m reminded that I have the best gift one could have, a beautiful boy who shines a light that shows me where I need to go.
Derrick Jeffries, who has Asperger Syndrome, and University of Delaware professor Nancy Weiss have started an online petition to call on the American Psychological Association to condemn the JRC’s shock therapy and other “aversive” treatments. More than 250 individuals have signed the petition (you can read the petition and sign it by going here).
Merry Christmas to you and your family Kristina.
Yeah, the good times .. and the not so good times.
“interior decorating in our house was for the birds.”
Oh.. how I can so much identify with that statement Kristina.
Mark’s room is an austere wreck.
Curtains shredded. Walls and carpet covered with drawings.
Shrugs shoulders.
Worse things could happen!
I can honestly say that I am not bothered by these things.
Mark is happy, and he is making progress.
These are the things that really count!
Felice navidad to all!
“I know this is not, on the surface, the most “Christmas-y” of posts”
which is a relief; not all of us out here get the most christmasey of holidays; a little reality mixed in with the rest of it…it’s nice. thank you for the post, dr. chew.
“I know this is not, on the surface, the most “Christmas-y” of posts”
Which is a relief. Not all of us get the most Christmasey of holidays. A post that has a little reality mixed in with the rest of it…extremely nice.
Dr. Chew makes us dance the happy dance.
While the shocks may relieve subjectively bad behavior for a time, what are we actually teaching the kids except to fear those who have power over their lives? I wonder once they escape the powers that be, how their lives are affected? I can’t begin to imagine it helps in the long term, like all matters of convenience rather than thought.
We have to get around the meme that the children “deserve” this treatment, because that’s what it is…a trick of the mind to justify torture.
It’s a perfect story for Christmas time. How much better to make room in the heart for the “least of these”. (When did we shock you, Lord? Whenever you shocked the least of these…)
Thanks, Kristina, and happy holidays to you and yours.
Just because its christmas C dosnt stop headbanging!!
A good post as it convays a very important message, there are other ways, humane ways.
What more can a parent give her child than the tools to cope with life himself. It may take time, but it is worth it.
Positive reinforcement ABA has also helped my son Conor but there are families for whom the problems are so severe, so dangerous and so life threatening that even positive reinforcement has not always worked. Early diagnosis, and ABA from an early age, provided by properly trained ABA service providers is not available to all. And I do not know as my son, now almost 12 changes through the teen years and adult hood, what future challenges will arise. I will not judge those caring parents who have taken their children to the JREC and helped save their children from self mutilation.
Some of the comments received at my blog site on previous comments were from parents, including Susan Handon and Ilana Slaff, a medical doctor, who gave testimony to the benefits that the JREC aversive interventions brought to their children. I do not dismiss such evidence from fellow parents.
Merry Xmas to all!
Kristina. Merry Christmas and happy holidays in return.
As far as the post, Christmas or no, it is a realistic reminder that there are others who may be having a kind of different day; that it may, or may not, be the holiday usually envisioned, and that consideration of these things and the welfare of all may be more in the vein of the intent of the season, rather than the unabridged consumerism that advertisements suggest.
Regards to you, Charlie and family for an excellent day.
That says it all and then some—hoping you and your family had a wonderful day.
A letter by Martha Ziegler of Somerville, MA, in the Boston Globe:
M:
You mean this happy dance??
http://youtube.com/watch?v=dxYNUu_2egM
Forgive me, I’m kind of an opportunist…
I was raised by the use of aversives, they do work, but they do leave a lasting impression upon a person.
While spanking and yelling and other types of hitting ones child may produce a more normal acting child, those things promote Fear of the discipline giver.
I cannot say that their techniques are not effective, but I can say that using Fear to instantiate good behavior leaves psychological marks and bruises.
Totally!
Kristina, This is a fantastic piece of writing. I hope you are having a great holiday season, and please keep posting. You are one of the best out there.
I work for the CT Council on Developmental Disabilities as well as a parent of a 10 year old boy with autism.My son used to attend a “private” (segregate)school in Hartford where I “used” to work…he was restrained six times for non-emergency situations.When I work there, I to had to restrain children…regardless if I believed if it was benefiting the child or not.Half of the children that were restrained at the River Street Autism Program in Hartford that is run by CREC,didn’t need to be restrained they just needed a break or a better ABA therapist who had patience.
I testified last year at a hearing sponsored by P&A with other families that were willing to tell their stories…it can be seen on CTN from 12/13/06.I also helped pass a new law in CT on the Use of Restraints and Seclusions in Schools that went into effect 10/1/07.Its not the best piece of legislation,but its a start.
I also toured JRC back in the summer and spent 4 1/2 hours there acting like a parent who wanted to place her child with autism…It was the hardest thing I ever did in my life.To walk around the school and observe the individuals there (6-45yearsold)Some people were just left there to die….I mean to watch how the clients would walk in fear, and how anxious they got when someone near them received “the application”.I mean prisoners who have committed haneas crimes have MORE rights then these individuals.I think its hard enough on our kids who have a disability like autism, then on top of it be non-verbal and then someone sticks you in a place like JRC and you sit there and think to myself….wasn’t I punished enough…now electric shock.
I would like to know how many parents who have placed their child/young adult there have asked to feel “the application” because I did.And when I asked if most parents feel the “application”before they place their child, the answer was NO!!!! How sickening.
Just recently there was an article in the Boston Globe and a few other places on the Prank Call, that had staff administer 77 shocks in the course of 3 hours to a student that was sleeping and ended up in the hospital with third degree burns, and another student received aabout 45 the same night in 3 hours because of a prank call,So JRC may have the best technology around,but accidents like this are NOT fair to these individuals.
Look at the Mother Jones magazine article on School of Shock….or Mouth Magazine, or the September 25th Long Island Business News (I was quoted in there as well).
My point being….I have been there, I have seen how these indivisuals are treated and it has been going on for over 35 years….its time to STOP THE ABUSE!!!
I recently emailed a letter around from Derrick Jeffries asking to sign on to a Letter to APA to stop funding for JRC.
Anyone interested in more info and/or contacting me…feel free.
Thanks,Connors Mom
Thank you for writing about all of these—-I hope Connor is in a good school now. I remember reading about the hearing in CT—I’ve my own interest in the issue of restraints as I wrote in my post. The incident of the prank phone call seemed, to me, to point to severe administrative and supervisory lapses at the JRC—– I’ve signed Derrick Jeffries’ letter and encourage many more to do so. More links to online articles about the JRC are here (also in the comments). Thank you.
Very best wishes