Parent Stories

2008

NY is truly archaic. Here in California we ended the quiet room fiasco in the early Eighties after a few clients were accidentally killed while wrestling them into the quiet rooms. Before that I used them for two years as a staff in residential. They replaced quiet rooms with temporary physical holds to calm the client down and use of "clears" where when a client became disruptive the area was cleared of other clients and staff would monitor the upset client from a safe distance until he/shecalmed down. The "clears" worked the best. The quiet rooms are not only dangerous and escalate the clients more, but staff has a tendency to overuse them and get too rough. Female staff where I worked were oddly the ones who demanded more control over the clients and then the male staff being chivalrous would oblige thereby escalating the whole thing further. As a staff who had to do this sort of thing, it was truly a nightmare.Demand they stop using the quiet rooms! They are over twenty years behind what we do here in California and they get almost three times the federal money we get here!

What a drag to have to worry about how your kids are being treated at school, above and beyond the organic worries that go with being a special needs parent. On to the legislators!

Lisa
Pittsford, New York

2007
My name is Tia I have a special needs son that is 7 years old. On 10-10-07 my Son came home from school with bruises and marks on his arms, shoulders and back. Trevor has a language impairment and it is difficult for him to express what happened in the past. On this occasion he told me that the aides squeezed his arms and took him outside behind the classroom and pushed him into the wall. He said she was mad at him and that he was scared. I took pictures and the next morning took Trevor to the pediatrician who also took pictures and documented what happened. I contacted the school and asked for an incident report. I also provided them with a copy of the pictures. A school investigation was conducted. Both aides were removed from the classroom pending the outcome of their investigation. I also filed a police report and gave the detective a copy of the pictures. He interviewed Trevor and took additional pictures. Yesterday the HR department informed me that there investigation was completed and they found no evidence that their staff did anything inappropriate. The aides will be returned to class on Thursday. The police have indicated that the incident does to seem to rise to the level of abuse or assault.

I am in shock over this. How is it OK for him to come home with bruises inflicted by adults that are supposed to be trained to work with special needs children. I do not know what to do or how to approach Trevor being in the same class with the adults who hurt him. He does not want to go to school, is not sleeping or eating well and is very emotional. I am sad, angry and frustrated. I need help and advice on what I can and should do next.

Thank you,

Tia

2007
I live in mountain city, Tennessee and I also have a 7 year old down syndrome/autism child whom the school has been restraining in a chair for time out. I saw one incident last school year of this and questioned these methods. By a staff members own admittance, it is happening again this year. This very much needs to be stopped. My daughter cannot talk and therefore, cannot tell me anything about it. You wind up sending your child to school and never knowing what is happening to them. I feel this is cruel and inhuman treatment. Special needs children are humans and should not be treated like animals.
Kim
Mountain City, TN

2007
I was so happy to find this site, I nearly cried. Thank you so much for doing this. So few people have any idea as to how badly this is needed. My son was nearly ruined psychologically by the school district last year. He always loved school, then suddenly, he told me he didn't want to go to school anymore -- he wanted to stay home with me. I was stunned...he LOVED school. What happened? Then I thought about it...I wasn't hearing about anyone from school like I did the year before -- not students or teachers -- and he just refused to talk about school. He has Asperger's and ADHD, so he is not very good with describing abstract thoughts...well, he can't. And the school knows that. Therefore, my son couldn't tell me what was wrong, and despite my constant asking, they kept telling me everything was fine. It was NOT fine. Last October, the school sent me a letter describing a unilateral "change in his plan." I didn't agree to it. I wrote a letter informing them they had no right to make a unilateral change in anything, and I demanded a meeting. It was at this meeting that they said he was, "violent" and "out of control." Understand, my son is very meek. I have seen him have plenty of chances to act out violently, and he NEVER has...he sits there and takes it. I told them this didn't sound like my son at all. They brought in a "behavior specialist" to observe him without our knowledge or consent -- she had PAGES of notes on him, but we were never allowed to see them...they suddenly "disappeared." We tried for 8 months to see them -- we were finally told that if we've asked more than once to see data and haven't received anything then the data, "probably didn't exist." But I KNOW it existed...I saw this person paging through it during a meeting! Where did it go?!?!? At the end of that October meeting, I saw it. The principal showed me the time-out room they used for my son -- they called it "the calm room." It was all cinder-block...no windows. It was the size of a storage closet...and that's what it looked like to me. They attempted to dress it up by putting in mats, cuddly looking blankets and stuffed animals and a therapy ball. There was a "protocol sheet" hanging on the wall -- specific to my son. Someone usually stood in front of it when I tried to read it, and it also mysteriously "vanished." But, from what I could deduce, they were allowing my son to go into complete meltdown mode before removing him from the regular ed. classroom. They were to do this by saying, "It's time to go to the calm room now." He wasn't given a choice! If you're put in a closet -- not by choice -- how is that NOT punishment? They kept asserting it was NOT used in a punitive manner. I was stunned...I couldn't even speak. When all of this had been done to him, he had no FBA. They wanted their "behavior specialist," whom they refused to provide proof of what her role was in all of this, to do the FBA. I protested and said I would not allow it unless a neutral third party did it. They protested. I said that if putting my son in a time-out room and threatening to take away his comfort objects was the best plan that "specialist" could come up with, clearly we needed a second opinion. Reluctantly, they agreed. But, the FBA couldn't be done for another 12 days. So, if I objected to the use of the room, the more qualified specialist they were bringing in to do the FBA would never see it. I was in hell sending him back there during those 12 days. The consultant who did the FBA completely understood and even admitted that my son likely perceived the calm room as punishment. She also felt it was such, as he was not being given a choice to go there. I implored her to have them stop this, as I felt it was to my son's emotional/mental detriment. I said this because he was having constant nightmares, trouble eating and sleeping, excessive clinging to me and my husband, needing constant reassurance that we loved him and would keep him safe, strange overreactions to seemingly normal things like towels and blankets, and other symptoms we brought to the attention of his child psych. His doc changed some of his med dosages to see if that would help. It didn't. As a result of the FBA, he was taken out of the general ed classroom and put into the resource room almost full-time. But, the principal made sure she told me what an inconvenience that was, and how she could not continue to give up her Intervention Specialist to my son. We put in writing that we did not want the time-out room used with him anymore EVER -- they did NOT have our permission, nor would they EVER get it. We felt the FBA was incomplete in the sense that it only gave "suggestions" on what to do -- there was no solid BIP. And, it didn't describe what "interventions" were already tried without success. We felt that was important to have on record. The FBA consultant wouldn't do it. She suggested that we write a statement to be attached to the FBA if there was anything we wanted to clarify. The school refused to add that statement to the FBA. That meeting desintegrated into the principal verbally attacking me -- and then crying, because in her "30 years of being in education, she has never had a parent try to dictate her job to her." She did "all the right things and consulted all the experts" -- she didn't know what else we wanted from her. I told her, after taking a breath and counting to 10 that there was one set of experts she neglected to "consult"...the child's PARENTS. She had no response. It was during this meeting that she let it slip that my son was restrained in a "hot dog roll." I had to ask what that was...I could imagine, but I wanted to hear it. They rolled him up in blankets, like a hot dog...thus, the name. I couldn't imagine my son liking that AT ALL because he never liked to even be swaddled as a baby. I said this and they claimed they did it in fun and he liked it. I don't think so...that's when we started noticing the odd reactions to blankets and towels. But, since it wasn't in writing, only said verbally -- the school would deny or ignore it when I brought it up. I sent a letter detailing the meeting and the points on which we could not come to an agreement. Two months later, I got a response. Basically, it said that although our objection to the "calm room" was noted, because they did not feel it was being used in a punitive manner, they would continue to use it whenever they felt it necessary despite our witten insistence not to do that. IMMEDIATELY, I fired off a no-consent letter that I found on TASH's website. I cc'd the Sped Director and the Superintendent, and every one of my son's teachers and therapists. That got their attention, and the principal was forced to "retract" her insistence on using the room. I finally found an advocate to help me fight for my son's rights. They really don't like her at the school, because she's good! We got a letter from my son's psychiatrist stating that the aversive interventions he suffered had caused him to develop Post Traumatic Stress Disorder, and an alternate placement was strongly recommended. They were outraged and tried to ignore the letter. The advocate and I wouldn't let them. My son had to be put on some major meds to help ease his PTSD symptoms because talk therapy was not useful because he couldn't describe what happened due to his communication deficits. The school tried to wear us down by "meeting" us to death. Meanwhile, I contacted my US Representative. I will say, his office did try to help me, but stunningly, there wasn't much they could do except put pressure on the state Dept. of Ed. to fix this. There is NOTHING in Ohio Revised Code that specifically addresses the use of aversives in school settings. In hospitals, jails, group homes -- yes. But not schools. I had no recourse. An attorney from another state who was helping another family told me that what was done to my son was prohibited in the section of the Code on child abuse, but I really didn't have proof. The school was denying they had restrained him, and only had "data" on the use of the calm room for about a week and a half long period -- from the time I objected until the time of the FBA. But, during this time, he was in there for upwards of 70 minutes in just a week's time. Please tell me what IEP objectives he could have been meeting restrained in blankets in a time-out closet?!?!!? Judging from his first quarter grades -- nothing. So we kept fighting, kept meeting, and they kept avoiding the questions we asked. They kept refusing to give us the data we requested, even though we had a right to it. So, our advocate wrote a strong letter, asking once again for all the data they wouldn't give us, and gave them a deadline. They responded by sending us a letter requesting a meeting to which they would be bringing legal counsel. We couldn't afford legal counsel. We had the US Rep's office -- although no one offered to come to the meetings on our behalf -- and our advocate got some help from the ODE. But, the ODE really didn't have the authority to enforce or demand anything. We had 2 facilitated IEP meetings. We were not allowed to address our concerns about the calm room, because they said that happened in his past and was not on his current IEP (it NEVER was on his IEP, but they did it anyway!). They kept denying the restraint because it was not documented in writing or on film. Their lawyer even verbally abused and physically manhandled our advocate before the last meeting! We had two choices...get a lawyer and take this to a long, protracted court battle during which our son would have to "stay put" at this hellhole because of IDEA 2004's provision on that; or we could use the State of Ohio's Autism Scholarship Program. That involves applying for the scholarship money ($20,000 that the ODE allocates to districts for each child they have identified as having a primary disability of Autism), picking providers that are approved from a very slim list, and usually having to pitch in extra money (generally a couple thousand dollars) of your own. This is the option we chose. We could have spent money we don't have on litigation, and maybe have won (due to a solid binder of documentation) that would have dragged out for years, or we could spend the money on getting that appropriate education for our child. No, it's certainly not free, however. It's nice to have rights under IDEA, but only the very wealthy can afford to enforce those rights in the court sytem.Our son is finally recovering from his PTSD, but he is not there yet. The psych cannot predict if he will ever be plagued by "Flashbacks" from what he suffered at any point in the future. And, his self-esteem took a serious blow. He is a very good, very sweet, 7-year-old boy. I hope we can get him back to where he was before this. I really wish the public could know what they are paying for with our school district. I doubt they know that they are paying for what amounts to institutionalized abuse. But, I fear retaliation. We still have to deal with them for our sons' (we have two on the Spectrum) IEPs and MFEs. I also hope and pray that Congress will be made aware of this when No Child Left Behind is reauthorized. I've made my US Rep aware of it, but I think they all need to know what's going on. Thank you for telling our stories. Thank you for standing up for these children. Someone has to. The system is so broken and corrupted. Thanks for reading this and doing what you're doing.
Sincerely,
Lily
Ohio

2007 & 2006
My 7 daughter has Autism and has been restrained many times in public school for the past year. All this did was make her more aggressive but they would not listen to me. We finely had to take her out of school to keep her safe from these people that were suppose to be helping her. I turned to so many organizations to help me I've lost track of the count. Not one of them helped us and we don't know where to turn for help.
Kellie
Lee County, Florida

2006
I am the mother of an eight year old daughter with autism and epilepsy who was physically restrained by two women in a secluded room that was being used for a "time out room." My daughter was fortunate that at least that room had windows; however, even though I was in the building meeting with school district staff for an IEP meeting when the restraint occurred, I still do not know why my child was held so tightly by her upper arms that she had fingerprint imprints on them, nor why she was forced into a chair which was pushed so far into a desk that she literally couldn't do anything but cry for "mommy," nor can I indentify the second woman who was involved (one was her "regular" classroom aide) because our district refuses to provide an incident report on this matter, including ignoring a FERPA request. I only know what happened because my mother-in-law was with me for the meeting that day and saw what happened to her. I have no idea how many times this may have happened to my child, only that she told a school social worker that "all they do is drag me by my arms all day. They drag me by my arms to the cafeteria, they drag me by my arms down the halls, they drag me by my arms to the principal's office, and then they call Mommy and Daddy to take me home." My daughter's neurologist believes it is not safe to return her to this district, as they will not agree to accept the free training my state offers, nor agree to change practices which are dangerous for my daughter, given her history of life-threatening seizures. Fortunately, in PA there are regulations regarding restraints and seclusion use. Unfortunately, most of the time those regulations are not enforced.Seclusions and restraints are occurring more frequently and are occurring all over this country, not just in Florida. I sincerely applaud and thank you for exposing just one such district for using these barbaric practices on "our" kids. It is media attention such as yours that will hopefully bring about an end to child abuse in public schools.
Jen
Pennsylvania

2005 & 2006
My son was restrained 65 times that I know of in a 12 month period. We pulled him out of school because we thought he was having a breakdown. A year later is when we found out about all the restraints. The school never told us. When I filed a complaint with the FLDOE they found no fault with the school district for anything they did. The school even went as far as lying to the DOE by telling them that "School staff had demonstrated PCM restraints on the parent providing her with full knowledge of the intervention." I couldn't believe I was reading this. Filing a complaint with the DOE is a broken process and a big waste of time for parents.
Phyllis
Palm Beach County, Florida

2007
My son has suffered 4 restrainings in a month & a half period. The last one was so severe they caused a cervical strain, busted lip, bleeding under the skin on his arms torso, face, neck/shoulder area and almost suffocated him.The force was so excessive that they imprinted his polo shirt into his body. I have filed 3 police reports and made 3 reports to DCF. My son was 7 and weighed 52lbs when the restrainings started. If my son wasn't visibly injured I may never have known the school had no intention on contacting me on a few of the restrainings. The county I live in is working off of a 12 year old behavior policy that involves barbaric adversives on disabled children. I did a public records search on the Behavior analyst that injured my son on 4/07 and it turns out he has at least 3 DUI charges in his background one as recent as 7/07. How ironic a Behavior Analyst who can't control his own behavior??????????? There are no regulations on these matters and it is hard to hold anyone accountable. It almost seems as though no one cares.
Anna
Port St Lucie, Florida

2006
I saw that you requested families who have difficulties with restraint and safety issues regarding their child in ESE.I have a 13 year old son with Down syndrome who is staffed into a TMH class with one teacher and one assistant.The program was totally inappropriate for him (or for TMH students in general) and he became a behavior problem in the fall. In addition, there were safety issues for him (elopement) and for the students and teachers (he threw classroom items).Now the school wants me to sign a release to allow CPI (Crisis Prevention Intervention), which, I understand is in essence physical restraint. I have many concerns about this, and how it will be used.
I am in Brevard County, Florida.

2006
Ian is in 2nd grade. We are in Lee County. He is in a school for SED students. Per his IEP he is to have a safe place to go to calm down. They use a normal timeout room for this even though his therapist said this was not appropriate. If Ian becomes aggressive because of failure to intervene he is placed in a quiet room. It is the size of a closet with only a window for light. Ian is scared to death of the dark and being alone. At previous schools the staff was not trained in restraint and they restrained him causing bruises.
Lee County, Florida

2006
We are very much AGAINST the physical restraint and seclusion practices used with our son Mark and any other disabled child. We recently got a back dated FBA with goals and information that we disapproved. Mark's IEP was changed so that the behavior specialists could continue to physically restrain him and remove him from class based on the "safety of other students and his teachers and staff." We told them that Mark was being improperly handled and that they "had created their own monster" by not understanding the manifestations of Autism and a child who has Sensory Integration Dysfunction, a Sensory Auditory Disorder, and organic brain damage. This also fell on deaf ears.
Pasco County Florida

2007
My son came home from school, laid on the floor, crossed his arms and asked me to grab his ankles on the floor. He told me - "tell them to stop doing this to me at school". Thank goodness Benjamin can descriptively talk enough to say when his school work is too hard, he wants to "breath outside". When he tries to leave the room, the teachers lock the door and "yell" at him and Ben tries to push his way out. That escalates into more fear and Ben shoves or strikes at them. Ben is then dragged to the ground and put into a "physical restraint" position - for at least 2 days in a row now. He says that the visiting Area ESE Specialist, from his old school told the teachers (in front of him) to restrain him. Ben also tells me he has trouble breathing (which I told Mary Ann just this week, he has recently been complaining of) in overstressed school situations, and in these situations. Unfortunately, I have had to research in a short time "physical restraints" - and nothing about what HCSD is doing is right. Ben has had escalated autism related issues all year, and no one should be surprised that he needs intensive, specialized direct behavioral supports - not physical restraints as a therapeutic intervention. Not only have I never given the school permission for physical restraint and was not notified (thank God Ben can talk - or I may have never been told at all), but the issue nationwide has caused fatalities. This is yet another attempt for the school to avoid appropriate Behavioral Therapy services at any costs. This is a OCR violation - and should stop immediately.
Suzette
Mom to 10 year old student with High Functioning Autism