Crystal Garrett: Restraints, Seclusion and Children with Autism
An Interview with Crystal Garrett: Restraints, Seclusion and Children with Autism
Michael F. Shaughnessy –
1) I have recently read about your son Zachary and wanted to follow up. Let’s get some specifics down first. How old was your son when he went to school and what grade (kindergarten, first, second ) was he in when he first began to have difficulties?
My son started kindergarten at the age of five at a public charter school. Unfortunately, the charter school was ill-equipped to deal with Zachary’s needs. At the time, my husband and I had not received a formal diagnosis as to what exactly Zachary’s needs were. It took approximately two years to have him properly diagnosed with Autism, ADHD and Generalized Anxiety Disorder. Zachary first showed signs that something was “off” prior to the beginning of his kindergarten year. However, each trip to his pediatrician would end with the doctor stating, “He’s a boy. He’ll grow out of it.”
It wasn’t until he started kindergarten that things became serious. At the public charter school he first attended, he was held in ISS on multiple occasions. My husband and I were actually told it would be our responsibility to have him properly tested and diagnosed. It became increasingly difficult for Zach to attend school because he was held in ISS (in isolation) so much so that he would have meltdowns frequently. After each meltdown, the school would call and ask us to pick him up early.
Due to these problems, we transferred Zachary to a local public school. At the same time, we received a preliminary diagnosis of Aspergers from the pediatrician. This helped explain his sensory difficulties along with his extreme rigidity when it came to routines. The anxiety came into play as well and Zachary could not focus or even handle being in large groups.
To deal with meltdowns that would occur due to overstimulation, the school staff would once again place him in a room known as the “Choice Room.” The room consisted of a desk, a teacher’s assistant, and worksheets along with little Zachary all alone. It was in this room that my child would have his lunch and be afforded time for recess (all in the confines of a small space.)
2) How was his behavior at home from birth until the time that he went to school?
Zachary seemed to thrive up until the age of two. That is when we noticed he was not as verbal as his older sibling and those his age. He would frequently become upset to changes in routine, and seemed as if he never wanted to leave the house. Of course, this has gotten worse as he has aged but those are the first signs we noticed something was wrong. Another giveaway for my husband and I is that Zachary couldn’t recognize expressions on others’ faces. He couldn’t necessarily tell if we were happy or upset. There were many times where I wondered if he had any clue as to what was occurring in the world around him. But he wouldn’t show these signs all the time. There were many glimmers of hope and many times where he would laugh and was simply a joy to be around. Unfortunately, after school began and he was isolated and restrained on numerous occasions, his laughter became less frequent. It finally got to the point where we were actually advised by his psychiatrist to homeschool him.
3) When was he finally diagnosed with autism?
The word “autism” had been flying around since Zachary started school, when his pediatrician mentioned that he had many of the symptoms of those with Aspergers, such as fleeting eye contact, awkward bodily movements, adherence to strict routines, etc.
So, he was five when it became a possibility. Please note that this was after many visits to the pediatrician asking for guidance and help. Then, when the public school he attended this fall at the age of six had him involuntarily committed for “tantrums at school” (that is actually from the hospital records), the attending physician at the hospital immediately said he was autistic and should not be in a hospital but at home and enrolled in a special education class. Unfortunately, even with the diagnosis from the hospital and a second opinion from a psychologist at our own expense, the public school system never classified him as having autism on an IEP; therefore, he was not offered the same services as others with the disorder.
4) Was he ever put on medication, and what are your views on medication?
Yes, unfortunately, we have had to try medication due to extreme anxiety and insomnia. He has tried several medications and we are still in the process of finding the right one to help him with sleep. I am very conservative when it comes to medicating my child. Luckily, Zachary’s doctor is as well. However, I believe it is up to each individual parent and child as to whether to medicate. I’m not sure there is a medication for “autism” per se. I believe we are treating the ADHD and anxiety, along with insomnia. I have a lot of compassion for parents going through the medication trials. It’s difficult for adults but even more so for a child, who cannot verbalize how they feel. I do, however, have a major problem with our current education system in America that seems to believe medication can “cure” everything. I have actually had teachers tell me my child needed to be medicated. It is absolutely up to the individual parents and physicians as to what is best for each individual child. My child never fit into the mold, so he never had a chance in the current public school system. If he wasn’t medicated, then if his disability manifested in the classroom, he would be restrained and then taken to isolation.
5) I assume or presume that you attended an I.E.P. at some point to hopefully address his needs?
Yes, we held several IEP meetings to address his needs. To be honest, the public school system I dealt with, much like the ones I covered in my career as an education reporter, did not address his needs. My husband and I were told that we had no choice in whether my child would be isolated, nor were we given a choice as to whether he was restrained. In several instances, when his disability manifested, a Sheriff’s deputy serving as the School Resource Officer was called to “deal” with my 45-pound 6-year-old child. I absolutely disagreed with this method and made it clear to the administrators. I was told it was not my choice as to whether the resource officer would be called. The school had that right.
And, as far as restraint goes, I was once again told it wasn’t my choice and I had no say. After my son came home and told me on various occasions about his stints in ISS or isolation and how he wasn’t even afforded the chance to play outside with his peers during recess, I made the move to contact an educational attorney to help fight for my son’s rights. Unfortunately, we still have yet to agree on whether he should be treated in the same manner and at his doctor’s advice, I am homeschooling my child, where he is free of restraint and seclusion.
6) I would say that there is general agreement that the vast majority of teachers are only minimally trained to work with children with special needs. But schools have a teacher shortage, and the number of students with special needs seems to be increasing. What can the average parent or citizen do?
The most important thing any parent can do is advocate for their child. Are there teacher shortages? Absolutely. Are teachers trained on how to effectively teach students with disabilities? Unfortunately, that answer is a resounding no. What we as parents of special needs children must do is voice our opinions. Our children cannot speak for themselves. They rely on us to be their voice. I have found in both my career as a journalist covering these same issues and now, as a parent myself, that too many people complain about the way things are but seem to go along with the status quo. This is absolutely not acceptable.
As a society, we need to care because these same children who are not receiving the education they deserve and are required by law to receive, will one day become adults. Public school systems argue consistently about not having the funding they need. No one can argue that education deserves to be funded. However, it is mandated by the federal government that our children receive FAPE. I have had other parents tell me a school system has denied services based on funding. And, I have to repeatedly tell these parents that is absolutely not an excuse. The federal government outlines this in IDEA and FAPE. Parents must know their rights and they cannot sit quietly while their children suffer. It can be overwhelming. It can be intimidating and you sometimes have to deal with the label of being “that parent,” the one who doesn’t sit quietly while their child’s civil rights are being violated. But, no matter how difficult it is, it is absolutely necessary.
7) ” Restraint” ( note I put it in quotes) is often needed to protect the child from hurting other children, him or herself, and possibly even the teacher. Should that child be segregated rather than receiving ” restraints”? Or should the school system pay for institutionalization? Or should the child be put on medication?
It is a misnomer to say that restraint is often needed to protect the child from hurting other children or himself. This is why when developing an IEP or 504 plan, there are items put in place to deescalate the situation from even occurring. In my own experience with my child at home, I look for triggers or things that may cause him to have a meltdown or a situation to occur that would necessitate a restraint. If you can pinpoint these triggers by having qualified, trained staff in place, you can eliminate the use of unnecessary restraints. In fact, if school systems would invest in proper training, they would spend less in litigation involving the use of unnecessary restraints. As for institutionalization, I’m not exactly sure what you mean. Should there be special schools for children on the severe end of the spectrum, absolutely. Some children thrive in those environments. Should the child be placed on medication? That is a decision between the child’s physician and parents. I don’t believe any teacher or principal in the school system is equipped to diagnose a child’s medical condition. The bottom line is the federal government outlines the laws to be followed: children should be educated in the least-restrictive environment possible. People can of course argue over what is least restrictive and in fact do. But study after study has shown that restraints and seclusion lead to the same behaviors administrators are trying to fight against to begin with.
8) Obviously one to one instruction by a trained, competent, individual would be ideal. But is this realistic? Can every child with autism receive one to one instruction?
Not every child needs one-on-one instruction. Every child with autism is different, meaning their needs vary. Could some children benefit from one-on-one behavior support? Absolutely. Is it doable? Absolutely. In my career, I covered school districts and would frequently view their budgets. Nearly every year, money was sent back to the federal government because it was not being used for children with disabilities. Now, if there is money not being utilized, the argument that it is unrealistic to provide the services needed is void. And, again, I have to go back to what the laws outline – every child, regardless of ability, has the right to receive a Free and Appropriate Public Education. The purpose of the IEP and 504 plans is to address the needs of the individual student. While around one in 56 children may be diagnosed with autism, that doesn’t mean each and every one needs one-on-one attention. It does, however, mean that we as a society have to meet their needs. It’s not an option. It’s a requirement. And it’s absolutely heartbreaking to have to fight for your child to receive any services, much less one-on-one.
9) Even I know about specific methodologies for working with children with autism, such as the TEACCH program out of North Carolina – ( https://en.wikipedia.org/wiki/Treatment_and_Education_of_Autistic_and_Related_Communication_Handicapped_Children Are you familiar with this program ?
I am familiar with the program and have heard many positive aspects of it. The problem with programs such as these in rural areas is that parents must be placed on a waiting list for months just to see if their children qualify for the program. In the area I live, which is extremely remote, the closest TEACCH program is around 30 miles away. Now, we do travel weekly for psychology and psychiatrist appointments as well as trauma-based therapy. I understand the program is extremely effective for some children, however, in my fight to obtain resources for my child, it has never been presented as an option.
10) When did you decide to home school him?
After my son was involuntarily committed to a psychiatric hospital for children two and a half hours from my home, the thought surfaced. Then, I allowed him to go back to the public school for a few months. After disagreeing on the IEP and learning that my child had been isolated on a daily basis (almost akin to being in a prison setting) along with the fact he was restrained many times, I spoke with his psychiatrist who advised me to get him out of the situation immediately. Neither of us felt that the school was equipped to help Zachary. So, I began to homeschool him in January of this year. This was three months after his hospitalization and he had actually regressed before leaving the school.
11) How is he currently doing?
Zach is thriving at home. Now, homeschooling is not the ideal situation because I would prefer that he have the same happy school experiences his brother and sister are able to have. However, we are working daily to achieve his academic goals. It has been a difficult change for the entire family, as I gave up working full-time to care for him and teach him. However, when my child told me how miserable he was in the school setting and looked up at me with his blue eyes and said, “Mommy, I can’t be good,” I knew that something had to change. It is my hope to move to an area where the schools are better equipped to help Zachary. But for the time being, his laughter has started to return. He knows he is loved and he believes in his ability to be a good person.
12) What have I neglected to ask?
I honestly can’t think of anything but will be more than happy to clarify any questions you may have on anything I have written. I hope my questions explain better our predicament but more importantly, I hope that other parents and teachers will see a better way of helping children with disabilities. Unfortunately, you cannot teach compassion. However, you can hope that others empathize and see that there are better ways of doing things.