April 2006:
To whom it may concern:
My only son, Aldo, is autistic and in addition suffers from severe mental retardation. He is my whole world and the object of all my love. These feelings could not be stronger, reaching as they do an intensity that hardly anyone could imagine.
Since his most tender years Aldo's aggressiveness has been evident. I still shudder to recall the time when, being only nine months old, he bit the arm of his grandmother so violently that her arm bore a mark for a long time. Aldo's irritability and sudden swing moods, going from one extreme to the other grew, day by day, so much so that he injured himself and other persons, also frequently breaking many objects of all kinds, such as toilet bowls, televisions, glasses, etc.
We, his parents, as well as other close relatives, have been tremendously afflicted by Aldo's behavior, which even prevented us from sleeping in peace, as he suffered prolonged periods of insomnia, accompanied by irritability, in which his only entertainment was to paint walls with his own excrement.
Following a stay of 42 days at the Elmhurst Hospital, where he was taken in a condition that made him impossible to control, he was transferred to a residential school in upstate New York, where he remained for six years. This institution, considered to be one of the best in the State, was unable to cope with him. Even though Aldo continued to be under medical treatment, reinforced by psycho-pedagogic methods, with a person taking care of him, on a one-to-one basis, twenty-four hours a day, nothing proved effective.
As a rule any new medicine he was given worked at the most for one week, following which not only did Aldo fail to improve in any way, but his weight went up to over 200 pounds, even though he was only 15 and just over five feet tall. His behavior became worse, so much that I always noticed that some members of the staff, out of fear of being attacked by Aldo, avoided attending him.
When he was at the upstate New York school, Aldo was often out of control, endangering his life and creating serious danger for members of the staff, who several times had to call 911, resulting, on quite a few occasions, in his internment at Saint Francis Hospital in Poughkeepsie. In one such incident he was taken to the hospital handcuffed.
The visits we paid him at Saint Francis Hospital were extremely painful for us, having in fact stamped on my memory and that of his father indelible marks of extreme sadness and frustration. Never will we forget the times we saw our son lying in bed, drugged from the strong doses of various medicines he had received, half asleep and unable to sit; and, the effects of the drugs having worn off, he became so aggressive that the hospital activated an alarm summoning members of the staff to Aldo's room to control him. Our emotions became so painful that we went outside to weep.
Finally the school at upstate New York officially informed us that they could not cope with Aldo, so that we had to look for another institution that could care for him. When we were beginning to completely despair (and I started to think that my name, Esperanza, which means hope, had become a cruel irony), we found out about Judge Rotenberg Center, which is for me a veritable miracle school. Thanks to the method used there, and which my husband has, without experiencing any kind of harmful effect, tested on his own person, Aldo is improving day by day. He is taking no medicine and his weight is normal for his age; nor does he injure himself or others. We actually enjoy the time we spend with him.
As I already said, Aldo is my only son and all the world to me. Nobody can protect and care for him better than me.
Esperanza Escorcia
Glendale, NY
May 2006:
To Whom It May Concern:
Our son, David Forbes is a student at the Judge Rotenberg Center in Canton, MA.
Below is a brief description of the problems David has faced and some of the solutions that have been attempted.
David was born in 1985. By 23 months of age it was obvious that he was developmentally behind his chronological age. He was enrolled in the early intervention program of our local school district in New York State. David has remained in special education programs up to and including the present time and is classified multiply handicapped. David is and always has been a sweet, caring and considerate young man. He has been diagnosed as having; Attention Deficit/Hyper Activity Disorder, Pervasive Developmental Disorder, Oppositional Defiant Disorder, Intermittent Explosive Disorder and moderate Mental Retardation. David is highly impulsive and seeks to be the center of everyone’s attention. Due to these factors what might be a negative consequence for most people is a positive experience for David. David seeks out physical restraint, police involvement and even incarceration. He will find and take advantage of any and every opportunity to accomplish these goals. These behaviors seem to give him a high similar to that of certain drugs, a high David seems to have found exhilarating. Although he has never been overtly violent, he has and will react with force when someone tries to prevent him from placing himself in harms way. Throughout his life he has been prescribed a wide variety of medications and has been hospitalized many times. He has been a students in Local School District, BOCES and several Private School Programs within New York state, all of which used Positive Reinforcement Behavior Programs. In spite of this, his self endangering behaviors became more and more frequent and more intense. While a residential student and on medication in a highly structured behavioral program in upstate New York with a one to one aide, David engaged in a behavior which placed him in grave danger and resulted in his arrest. At that time he could have been sent to an institution for the criminally insane until he was cured. This would have, in all probability, a life sentence, since there is no cure for mental retardation, which plays a part in his ability to control his behavior.
We were able to get him admitted to a local mental hospital on Long Island, a facility that specialize din Mentally ret*d/Behavior Disorder patients. Their solution was to keep him drugged to the point that he was oblivious to his surroundings. In spite of this he managed to injure staff and was often strapped to his bed. He was not receiving any education and was regressing in his cognitive functions. He had no quality of life. He was restricted to an 8 by 12 room with a bed and no other furniture or anything else in it and an aide posted at the door 24/7, to keep him in the room. We explored alternative placements in facilities from Delaware to New Hampshire.
He was accepted to the Judge Rotenberg Center in Canton, MA in February of 2004. Upon his discharge from the hospital, David was on a dose of 900 mg of Thorazine. When we had the prescription filled at the local pharmacy near the hospital, the pharmacist found it incredible that such a high dosage was being administered.
We had initial trepidations about the use of aversive techniques in the Judge Rotenberg Center behavior modification program. My wife and I both insisted on experiencing the GED prior to giving our consent to its use. Despite our concerns, after seeing the results they have achieved in a relatively short time, we are converts and believers.
Today David is on no psychotropic or sedative medication. He has made strides academically and socially. GED applications have been rare and just knowing that he has the device on is usually enough to remind David to abstain from dangerous behaviors. He still has impulses to call the police and report that he has committed horrendous acts, which have not actually taken place. An incident such as this occurred when David was sent home without the device around this time last year for Easter vacation, Previous and subsequent visits while wearing the device were uneventful and no applications were necessary. David has been on many field trips with JRC staff including sporting events and activities such as horseback riding and bowling, activities that previously had become too dangerous to chance.
David greatly enjoys his new found freedom. He is polite, well mannered and knows and accepts the reasonable limits placed in his behavior. In conclusion we must say that we too believe in the humane treatment of the disabled. It is the definition of humane that we are forced to question. If it is considered more humane to dope someone up and confine them, than to administer an occasional physically discomforting negative consequence, we must disagree with that definition. The quality of David’s life as well as his academic skill has improved so much since he has been at JRC there is no doubt in our minds that we made the correct decision by placing him there and that indeed, they may well have saved his life. My only regret is that we did not find JRC much sooner and that no such facility is available in New York State. We would much prefer to be closer to our son. Thank you for your consideration.
Sincerely,
Roger P. Forbes M.A.L.S.
David’s Father and Adjunct Lecturer of Human Development and Learning
Dowling College
Oakdale, NY
Barbara Forbes
David’s Mother
Coram, NY
April 2006:
To Whom It May Concern:
My name is Thomas George and I am writing you regarding my daughter, Ighosotu George, who is a student at the Judge Rotenberg Center in Canton, Massachusetts. Prior to her placement at JRC, Ighosotu was out of control. She had engaged in a number of self-destructive behaviors. My daughter attempted suicide by ingesting a bottle of Tylenol, running into oncoming traffic, and even attempted to jump out of a twenty-three story building. She was on several medications and was psychiatrically hospitalized due to her behavior. Ighosotu had a number of side effects from the medication she was prescribed and was unable to function in school. She was often rude/disrespectful to people in addition to being uncooperative with her teachers and school staff.
My daughter was admitted to the Judge Rotenberg Center on September 9, 2003 and I have seen a complete change in her. Ighosotu’s lack of inappropriate behaviors has allowed her to concentrate on her education. She works hard on her academics and is able to work independently in the classroom with no redirection from teachers or staff. She completes all of her assigned academics and more. She works out of all textbooks and sees the Spanish, Math, Science, and History tutors. Ighosotu has passed three Regent exams and will need to pass two more along with finishing her seat time to obtain her Regents diploma in June 2007. She is an extremely gifted artist and loves to draw. She has been able to maintain her appropriate behavior while at JRC which has allowed her to have an in-school job working in the kitchen. She is currently working as a receptionist in the afternoons and on the weekends in the JRC school building. Through her excellent behavior at JRC she is also independent at her residence and in the school building.
Thanks to the Judge Rotenberg Center, my daughter is doing amazing. She has made so much progress; behaviorally, educationally, and socially. I continue to see improvements and communicate with school staff on a regular basis. Ighosotu does not require the use of medication and I no longer have worry about the dangerous side effects associated with these medications.
Sincerely,
Thomas George
Brooklyn, NY
April 2006:
To Whom It May Concern:
My son Matthew Green is a 14 years old, 5’ 4 inches tall, 188 lbs. with Down Syndrome, Oppositional Defiant Behavior Disorder. He was raped in August 2003 while attending the Fresh Air Fund Summer Camp.
My life has been pure hell since then! Matthew started hurting himself by sticking pencils in his belly button and other objects in different orifices of his body. He was very aggressive at home. He was hit by my mother and me and many times destroyed property. He was out of control. I had to have him admitted to Bellevue Hospital a couple of times. He was unmanageable. Matthew would come home from school and watch TV, play his play station game, eat until he regretted. He refused to take a shower or a bath. Recently, refused to go to school. I could not take care of him. He had to be put on different medications to include psychotropic medication. It didn’t work! His sleeping pattern was disrupted; he gained an enormous amount of weight.
All the New York State Facilities, about 6 that I know of, reviewed my son’s packet, turned him down because he was too aggressive. Matthew arrived at JRC on March 1, 2006. He has improved immensely.
Sincerely,
Maria Green
Brooklyn, NY
April 2006:
To Whom It May Concern:
In 2001, after exhausting all possibilities known to me, and on the advice of an Arden Hill psychiatrist, I took my daughter, who I will refer as MB, to Orange County Family Court for help with her dangerous behaviors.
During these proceedings, instead of the help I sought, my child was subjected to physical, emotional, and sexual abuse at St. Dominic's house in Rockland County, NY.
Reports came to me that MB ran away regularly with other students, smoked grass, and had sex with strangers. At the facility, boys and St. Dominic male staff exposed MB to sexual encounters, girls beat and choked her; MB was hit in the face with a bat. Moreover, MB was expelled for jumping in and out of traffic, using a banana as a penis, and fighting.
I petitioned the court to allow MB to enroll in Family Foundation School in NYS; however, MB was placed with a woman with six children in Middletown. MB ran away from that placement, was not registered in school, and held company with a strange man with a cell phone. MB was then sent to McQuade. It was not until MB appeared in court with bruises around her neck that provisions for her to be sent to the facility I had been advocating for several months, Family Foundation School.
While my attorney challenged the Middletown District to cover the cost of Family Foundation School (a placement which had a high success rate, but was not on NYS approved list), MB was busy devising ways to be expelled, which she eventually was. Shortly thereafter, my attorney urged that I give her a chance to prove herself while attending Hawthorne School, another NYS placement. In less than a month, Hawthorne officials were requesting her immediate removal.
Upon hearing of the successful methods used at Judge Rotenberg Educational Center (JRC), and in a desperate attempt to keep MB safe, I agreed to her enrollment at JRC. I learned that JRC strictly enforces MB to comply with rules and regulations and promotes skills that would prepare her for life. Sometimes unorthodox methods have to be used to obtain a desired result, after all reasonable efforts fail. JRC is highly effective in this regard. JRC is also providing MB a quality education and her educational compliance recently produced "A" grades. It appears MB is stabilized at JRC, she is learning life skills in order to mature into a productive member of society and is also learning to control negative behaviors through JRC's enticing reward systems. JRC has been successful in all these modalities. I don't expect a child to enjoy JRC's enforcement if the child is defiant. Enforcement can be exhausting to an institution unless it is fully prepared for the challenge. Therefore, I can only see a regression to manipulation and nonconformity to societal rules, and lousy grades spelling ultimate doom, if MB is removed from JRC's current, supportive environment.
Finally, I think you have a lot of nerve interfering with a quality school with processes to actually produce positive results. When a family member seeks help, exercise the highest regard by treating the family with the dignity and respect they deserve, and diligently seek to provide the help they need. This is what I work to pay my taxes for and elect you officials to do.
Carrie M. Gingrich
Circleville, NY
May 2006:
To Whom it May Concern,
We are writing this letter out of fear that aversive treatments may be banned and our daughter desperately needs this treatment.
My daughter, Elisabeth, will soon reach her 22nd birthday. She was diagnosed in utero with biventricular heart tumors, and shortly after birth, she received a diagnosis of Tuberous Sclerosis Complex. This genetic disease is largely known for its symptoms, all of which Elisabeth displays, and among which are mental retardation, developmental delay and loss, as well as autistic like behaviors. She was diagnosed with Explosive Temper Disorder when she was 11 although she demonstrated violent behaviors from a very early age. By age 12, we realized we could not “handle” Elisabeth alone. Her violence was rising, in demonstrations aimed at herself as well as at us. She was then, and is now, large and very strong. She is echolalic and perseverative, and all attempts at promoting verbal skills were frustrated partly due to organic prenatal brain damage and partly due to educational failures. We were living in Florida at the time, and when we contacted social services, the first advice we were given was “to abandon our child at MacDonald’s.” This from a social worker. Over the course of the next several years, we were to receive this advice from several more “official” sources citing this as the best way to force the county and the state to recognize Elisabeth’s needs. We battled the school board for many years just to receive the kind of interventions Elisabeth required, and during that time, Elisabeth continued to hurt herself and others. Finally, in order to qualify financially for state assistance, which was the only way the school board was going to provide their share of full-time residential treatment, we were told we would have to: abandon Elisabeth, divorce, or divest of all financial assets including our home. We agreed to the third condition and over the course of six years, Elisabeth was enrolled in several “community based” programs. While enrolled in one or more of these programs, Elisabeth was sexually assaulted (the evidence was burned before we were notified), arrested for running naked down the street when her care assistants refused to get her dressed, and forced to sleep in a room full of broken glass when a different set of care givers refused to clean the room. From an early age, Elisabeth’s behaviors were treated with a variety of drugs: tegretol, valium, thorazine, benadryl, clonadine, clonopin and the list goes on. Nothing was effective. Her worst at-home attack came when she was receiving 1400mg of thorazine daily. This was during a visit from an investigator who was checking out a complaint from the school board, suggesting that we were exaggerating our daughter’s behaviors. He didn’t stay long and we managed to record most of the behavior. We endured the ineffectiveness of these “community based” programs until we had had enough. We were told to investigate the North East; we were told programs existed here that were better and more conscientious. So we did.
I am an Episcopal priest. My own professional and academic background includes a BA in English, a MDiv, a partial MA in Education (I was state certified and taught in the public school system for 9 years, beginning in Special Ed, and a DMin in Family and Recovery Counseling. While most of my academic background included behavioral approaches in counseling, I was also trained in Bowen’s Family Systems Theory. In other words, I used everything I knew and every skill I possessed to help my daughter. I was no more successful than all the others.
When we knew we were moving to Massachusetts, we investigated all of the programs available to Elisabeth, but only JRC was willing to take her. I say willing. They were eager. They knew they could help my daughter. We wanted so much to believe them. The first day she arrived she acted out violently and aggressively. We agreed to the GED treatment because we believed this was her only hope. Our daughter is mentally ret*d but she is not stupid. We knew she would want to avoid the GED, if applied correctly and consistently, and that Elisabeth would modify her behaviors when the program also included consistent positive reinforcement. Elisabeth, and JRC, have exceeded anything we could have dared wish or hope. Elisabeth is drug free. She is self-possessed. She is goofy and playful. She eats and interacts positively with her peers. She is mindful of the GED when we pick her up but we have never had to use it. Elisabeth has never looked as good as she does now, and while she is limited still in what she can learn, she is aware and highly receptive. JRC has given Elisabeth her life and a quality of life we wanted her to have.
Elisabeth will turn 22 next month. Our prayer is that she will be allowed to remain as an adult at JRC. We know from experience no other program would be effective.
Please call us if you have any questions we can answer.
Sincerely,
The Rev. Dr. Lance Giuffrida
May 2006:
To whom it may concern,
We are the parents of a disabled child who is enrolled at the Judge Rotenberg Center (JRC). We are writing in support of the school and how much good this program does for some very difficult children and adults. JRC became the only option for our son, now 25, who could no longer be treated at his prior placement, nor accepted by any other program, due largely to his behavior issues.
Our son, Andrew, is a complex individual. He requires special food and attention at mealtimes. He has seizures daily. He functions at a 3 year old level, and in addition, he is very aggressive towards others when even the smallest demands are made.
While living home, Andrew, at a young age, was placed in early intervention and day programs, and we were trained in and used behavior modification therapy. At age 9, these proved insufficient, and Andrew was put in residential care at Crotched Mountain in New Hampshire. This school provided him with both a residential group home and schooling. Initially, he did well, but at the age of 16, and after 7 years in a school that used traditional restraint techniques, behavior modification, and drug therapy, his behaviors became extremely dangerous - from attacking staff, hair pulling, biting, and tipping over furniture, etc. We could not have him home for visits as we feared for the safety of ourselves and his younger brother. He could no longer participate in school activities or field trips, such as Special Olympics, and he was sending school staff, trained in physical restraint, to the hospital on a regular basis. His life was a mere existence – alternating from “zoning out” or being aggressive towards people - depending on the level of drugs in his system. The staff who had once loved our funny, congenial son was now afraid of him.
As his behavior spiraled out of control, the doctors began adding psychotropic drugs to calm him down - he would be strapped to a papoose board for hours when he became aggressive. He remained at the group home in a drug-induced stupor, but even this did not stop his dangerous behaviors. The years of physical restraint techniques, and behavior approaches used by Crotched Mountain were now ineffective, and his behavior became so uncontrollable that the only option the school had was to expel him - the school told us we would have to agree to either have him dropped off at a local jail “for his own protection”, or to have him put in a psychiatric hospital.
We opted for the psychiatric hospital as the more humane option, but meanwhile we had to find a new placement for him. Working with the Newton school district, the Massachusetts Department of Education, and the Massachusetts Department of Mental Retardation, we spent months calling and/or visiting dozens of residential schools in search of a new placement for Andrew, all to no avail. He was being turned down by one after another due to his behavior and complex issues. It was at the psychiatric hospital that someone mentioned JRC as an option. We were told they had a proven treatment program and that it may be a good option for Andrew. As it turned out they were the only program that would take him in.
Andrew has been at JRC for 5 years. The difference is like night and day. He no longer injures people, he is alert and happy, and is no longer restrained for hours at a time. Now, when necessary, his aggressive behaviors are treated in a quick and controlled manner by a mild skin shock, and he is redirected to the task at hand. He is well cared for and we are so glad to have our old son back and functioning as a real person.
It is important to understand that the students at JRC are a small percentage of those students needing special education that are very difficult to manage. Traditional therapies have not helped them, many programs have expelled them, and their families cannot keep them at home. Most people have not heard of, nor can they imagine the violent behaviors and/or the self-abusive behaviors these students demonstrate.
It has been shown many times that aversive therapy in addition 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! We have seen this to work with Andrew, as well as other students at JRC. This is the ultimate goal for families and educators.
Aversive therapy, carefully monitored and controlled, must continue to be an option for struggling families. It is the least restrictive and most effective therapy for this small group of very difficult individuals, such as our son Andrew.
Thank you for your attention in this matter.
Sincerely,
Louisa and Robert Goldberg
West Newton, MA
16 Mar 2008, 11:38 am
