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                                                                                                                                                                       (New York)

 

My eighteen year-old severely autistic son, is a full-time residential student at the Judge Rotenberg Educational Center in Canton, Massachusetts, and has been such since March 2005. From October of 1997 through March of 2005, he was a full-time residential student at the New England Center for Children in Southborough, Massachusetts. In early 2005 the faculty of the New England Center for Children informed me that my son’s self-abusive and aggressive behaviors had become so severe that faculty and staff at the school were no longer able to treat him through the use of traditional “positive reinforcement” therapy, and they stated that the use of aversive therapy might be the only thing that could help my son. Since the New England Center for Children did not use aversive therapy, they suggested transferring him to the Judge Rotenberg Educational Center. Of course, since I am a New York State resident, this new placement had to be approved by my local school district and, ultimately, the New York State Department of Education. So, the Special Education Department representative at the Schenectady City School District first looked for in-State facilities that might be appropriate for J and that would take him. No in-State facilities would take him. Then out-of-State facilities were investigated. The only facility that was appropriate and that would take him was the Judge Rotenberg Education Center.

In March of 2005 my son started at the Judge Rotenberg Educational Center, with only the traditional “positive reinforcement” therapy being used for many months. His self-abusive and aggressive behaviors continued to escalate. In the fall of 2005, with my written consent and authorization as his sole legal custodial parent the Judge Rotenberg Educational Center filed a Petition with the local courts seeking approval to use aversive therapy, specifically temporary skin shock therapy, on my son. Upon filing the petition, he was given his own lawyer in Massachusetts in order to independently protect his rights, and the process went forward. After several months, the court approved the use of aversive therapy on him. So, in early 2006, the use of aversive therapy was started on him. As I visited my son quite frequently, I can say with all honesty that within a couple of weeks of using aversive therapy, he was like a new person. Gone were the bruises, cuts and swelled skin on his body from where he used to pound himself and bite himself; gone was the tensing up of his face that almost always signaled he was about to try to hurt himself; and gone was the constant wearing of a protective helmet for his head — he didn’t need it as much anymore. Although certainly not a person who could engage in a normal conversation like you or I, my son is now able to verbally communicate his needs while remaining calm. He is able to go outside in the sun and enjoy being around other people, and other people enjoy being around him. He even smiles now, which is just great for a mom to see. The faculty tells me that pretty soon he will no longer require the helmet at all. So, while he will always need to be under constant supervision his entire life, it seems that his life may now be happier for him.

 

Lastly, let me just say that aversive therapy is not some horrific electroshock therapy that goes into a person’s brain. That is a very common misconception. Until staff at the Judge Rotenberg Educational Center showed me the temporary skin shock device and how it worked, I had that misconception. One of the best things about the device is that no matter how long a staff member pushes on the button that triggers the temporary skin shock, the temporary skin shock only lasts a few seconds, as the length of time of the skin shock is controlled by a computer within the device. That really gives me peace of mind. There are digital monitors all over the school and at the residences, so any misuse of the device by a staff member can be caught, although I have never seen a staff member, in my opinion, misuse the device or mistreat any student. And believe me, if I thought for one second that my son was being abused or mistreated in any way, I would first call the police and Child Protective Services, and then I would personally go to the school and retrieve my son.  But, to date, all is well and the Judge Rotenberg Center has thus far, treated by son very well, and the school itself has a very pleasant atmosphere, as do the residences.

 

Respectfully,

 

Mother of a JRC Student


 

(Delaware)

We are the parents of a 23 year old young man who suffers from autism. He is the youngest of four children.  Our son seemed normal until he was about two and a half, at which time he began to regress.  He stopped talking, started acting strangely, and seemed to withdraw into himself.  After many weeks of trying to convince doctors that this was not normal behavior for a 2 year old, we received a diagnosis of autism.  He began school at the age of 3 in a so called "rewards only" program that specialized in autism. 

By the age of 6 he had begun to develop some aggressive and destructive behaviors and by the age of 9 he was a handful!  He would bite, pinch, hit, and kick others and he was very strong even at that age.  In one week, he destroyed our TV, VCR, microwave, and threw the vacuum down the stairs.  Around this time he was labeled "rare and complex" by our school district. He could also be a wonderful and loving child when not displaying these behaviors.  We as a family just loved him so much and just kept thinking things would turn around and the bad behaviors would go away.  They didn't!  Thus began a series of medications, you name it; they tried it on him (blood pressure meds, anti-depressants, anti-psychotics, anti-seizure, etc.).  We might add that the effects of most of these medications have not been studied on young children.  Our son now suffers from permanent tremors in his hands.  In addition to medications, the behaviors were dealt with by restraining him (including mechanical restraints as he got older) and putting him in time-out.

At around age 15, he was sent to Bancroft Neurobehavioral in New Jersey.  This place was a nightmare!  Amongst many other things, there was no plan to deal with the behaviors and we felt things were actually being made worse.  In addition, we had to call a day ahead of time to let them know we were coming and often once there had to wait for a long time at the outside perimeter to be let in.  At JRC, we often show up at unannounced, day or night, at the center or at the residence.  We had him pulled out of Bancroft after only 3 months.

A consultant, from Devereaux, was hired to develop a program especially for him.  It was supposed to reward him for the positive things he did and keep building on that.  It didn't work!  Over the years many of the so-called experts in this type of behavior were called for consultations.  The next few years passed by with pretty much the same patterns of behavior.  He would sometimes go through a good period for a few days.  We were always hopeful that this was a sign that he was changing, but he wasn't.  He was growing increasingly bigger (6'2'' and ~200lbs), stronger, and lightning quick, so his aggressions were increasingly more difficult to deal with.  It could take several people to tackle him to the ground and restrain him.  Many times staff and our son were injured. 

About 3 years ago, things went from bad to terrible.  He began to try to bite anyone that got near to him.  Biting has always been his worst and most difficult behavior to deal with.  The doctor began to increase his meds and to add new ones.  We hear people refer to their children as "zombies" on the meds; that wasn't the case with our son.  He just kept coming; they didn't slow him down at all.  At one point he was on 2 to 3 times the recommended dose of 2 powerful meds with a couple other meds thrown in.  They weren't slowing him down, but they were slowly killing him.  His liver enzymes were dangerously high, his cholesterol and triglycerides were high, and his white blood count and platelets were dangerously low.  He vomited, almost continuously, throughout the day.  Finally, a GI doctor said he had to come off of these particular meds.  We might add that once on these kinds of medications, it is no easy task to come off.  You don’t just stop taking them.  You must be slowly weaned off and there are many side effects from coming off.  Then began many trials of others medications and their side effects.  It became a vicious circle.

He ended up in a private psychiatric facility for about 10 days.  This was a place the doctor said he would be safe (as opposed to the state mental hospital).  He was kept in a dimly-lit room, not much bigger than a walk-in closet, on a filthy blood, urine, and vomit soaked mattress.  There was someone posted at the door to make sure he didn't try to come out.  He was covered in bruises and cuts.  Keep in mind this is a non-verbal individual in an adult body but with the cognitive abilities of a preschooler.  We can only imagine what un-supervised and un-monitored staff does when no one is around to see.  After leaving this facility, he spent most of the next several months pacing, crying, and vomiting.

There were nationwide searches being done for a placement for him and experts were being consulted.  One after another of these "reward only" places refused to take him after reviewing his behavior and seeing how many staff he had injured.  He was considered a liability.  We were devastated each time we were told another place had refused to take him.  We were losing our beautiful son and were helpless to do anything about it.  It felt like we were all being slowly buried alive.  We tried bringing him home, hoping that maybe we could calm him, but he would attack us.  We had to resort to using pepper spray and calling 911.

After about a year and half of this, we had two possible placements for him, the Judge Rotenberg Center and a place in Kansas.  After visiting both places, we decided that the place in Kansas, although well-intentioned, could not deal with his behavior.  Despite everything, it was no easy decision to place him at JRC because we had always heard such negative things about "aversive-therapy".    

Our son went to JRC a little over a year and half ago and he has come so far.  Soon after going to JRC, the aggressive behaviors stopped.  The aversive therapy, along with a lot of rewards, and a very healthy diet has turned his behavior around.  He is no longer on any medication and is quite healthy and happy!  Sometimes when we take him back after a visit, he skips through the halls, smiling, and hugging staff members along the way.  He has been able to come and stay at the hotel with us for visits.  We take him shopping, out to eat, and for walks, which he really enjoys.  This past Christmas we were able to bring him home for the holidays.  We can't even begin to tell you what a joy that was!  In short, our son has his life back and we have our son back.  We can never get enough hugs or hear enough of his laughter.

We have witnessed many families praising what JRC has done for their child.  We are very thankful for this program and what it has been able to do for our son. We can only imagine where our son would be (or if he would even be alive) if he had not gone to JRC.

 

 

Sincerely,

Parents of a JRC Student


(New York)

To Whom It May Concern:

I am writing you this email on behalf of my son who currently attends the Judge Rotenberg Center in Canton MA.  The fact that the New York State Department of Education has recommended to the New York Board of Regents that JRC be removed from the list of approved schools and that the State Senate wants to ban use of aversive techniques is most troubling to me.

He has been on 30 different combinations of psychotropic medications since the age of 9 years old.   He has carried a psychiatric diagnosis of ADHD, Bipolar Disorder, Personality Disorder, and Intermittent Explosive Disorder over the last 10 years.  He has been hospitalized on several occasions due to unmanageable, dangerous, and suicidal behavior.  He was in individual counseling, group counseling, and family counseling since the age of 8 years.  As far as his education he was left back twice before he even entered Special Education and did not respond to the Special Education programs that he was placed in after that (Inclusion Program, Collaborative Team Teaming, Charter School, and 12:1:1 program).  He was not able to be maintained or programmed in these settings.  He was not in school from 6/05 to 1/06 (approximately 7 months) because the New York City Board of Education and the New York State Department of Education could not find an appropriate program for him.  During those 7 months he wandered the streets, got in trouble with the police, and was hospitalized once again.     

He was eventually admitted to JRC the beginning of 1/06. 

He has made a significant turn around in his life since entering JRC.  First, he is totally off psychotropic medications; this is the first time that he is medication free since he was 9 years old.   Second, he has moved through four different residences since entering JRC; when he entered he was in a crisis residence and he is now in a small apartment with three of his peers.  Third, he has mastered many educational lessons which are individualized on his own personal computer; this is the first time he is attending to his education and working hard.  Fourth, his overall attitude has changed; he is actually interested in his future and the things that he will be able to accomplish.  Fifth, his coping strategies have improved significantly since he entered JRC.  He is expressing his needs and emotions in an appropriate manner for the first time in over 10 years.    

He has responded remarkably to the intensive behavioral interventions that are utilized at JRC.  Staff are incredibly well trained and focused on meeting every need that a student has.   

JRC has helped save his life.  Removing this program from the approved list and having him leave the program and return to NY would be detrimental and harmful to my son and his future.  No other program in New York City or New York State would be able to provide the extremely effective and therapeutic environment that JRC does.  There is high probability that if he had to leave JRC he would be hospitalized and back on psychotropic medication.  He has not responded to hospitalizations, psychotropic medications, and classical therapy in his past which is a strong indicator that he would not respond to it in his future.  This would set my son up for a tragic future which would be so unfortunate since now he finally feels like he has a bright one.

Father of a JRC Student

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