Gabriel Poirier - We Cannot Forget

I wrote about the death of Gabriel Poirier the other day, but this article was emailed to me, and I wanted to post it here. I wanted to write more about Gabriel, for one because many (like myself) had not heard about his death until this week (he died in April). Also, and most importantly, because I don't want any of us to forget him--a nine year old boy, innocent, simply attending school. We have to remember Gabriel, and his parents. Please visit this article by Graeme Hamilton at the National Post.

MONTREAL - After nine-year-old Gabriel Poirier was discovered lifeless in his classroom last April 17, his parents were told their autistic son had stopped breathing after hiding under a heavy therapeutic blanket.

Now a coroner has revealed that Gabriel's teachers had tightly wrapped him in the buckwheat-stuffed blanket, leaving only the tips of his ears sticking out, as punishment when he became disruptive. They left him unsupervised in a corner for 20 minutes, returning when a timer sounded.

Gabriel was unconscious and blue in the face. He was rushed to hospital, where he died the following night surrounded by his family.

It's pointed out in the article that weighted blankets can have therapeutic benefits. Our eldest happens to use one, it helps her sleep issues. Our youngest has used weighted lap pads, backpacks, and utensils. She also enjoys being "squished" by two pillows, bean bag chairs, etc. It is very calming. But, as Gabriel's father points out, what this school did to his son was not therapy, it was abuse.

"He was only 53 pounds, he was so small," Gilles Poirier, the boy's father said at a news conference yesterday. "How can they wrap him up like that in a 40-pound blanket? How can this treatment be tolerated?"

Not only was he wrapped four times by such heavy weight, but his entire face was covered, and obviously, he was trapped. Even more disheartening were the lies the school told the media and to Gabriel's parents. More from the family's lawyer, Jean-Pierre Menard:

Mr. Menard said the parents were surprised to learn Gabriel had been placed in the blanket as a punishment. The school board had initially said it was a natural death and that Gabriel had gone under the blanket on his own.

"The principal said they found Gabriel under the blanket and he wasn't breathing. The parents thought that something had happened while he was sleeping and that was how he died," Mr. Menard said. He said the school board later told the media that Gabriel had hidden under the blanket.

How a school could lie about Gabriel's death is beyond me. I hope they will be held accountable, and that real change is made regarding restraints. The article ends with this:

Mr. Poirier said he cannot understand why his child was placed in a restraint. "He was a very gentle boy," he said. "Sometimes he was loud, but he was never aggressive or violent. I just don't understand how this happened," he said, tears streaming down his face.

We can't sit idly by while such tragedies occur. My heart goes out to the Poirier family. I have not seen a picture of Gabriel, but there is a picture of his parents here--I feel images are so crucial to making an impact. We have to vow to never forget Gabriel.

Jennifer Lopez Sings for Autistic Students (Video Clip)

I found this news clip about Jennifer Lopez's performance at P.S. 37 in Staten Island. I wanted to share, it was a joy to see the kids dancing, and being so happy.

Another Senseless Tragedy...

People who prefer to find blame in vaccines, often look at us who embrace neurodiversity as being unrealistic. We even are accused of not having our children's best interests in mind. First and foremost, after years of studies continue to find no link between vaccines and autism, why is there still a debate? Why is anyone wasting their breath on this? All the money and media mention--for what?

Those who hold onto the hope of a cure for autism and support pouring millions into such research, also look at us in this same light. Let's be brutally honest here: there will never be a true "cure," not in the traditional sense of the word. What will come in the next several years, most likely, is a prenatal screening for well-documented "autism genes" or other markers for autism. Then, just like we've seen with Down Syndrome, pregnant women will be counseled to abort their fetus based on the positive autism test. A secondary "cure" would most likely be a combination of medications and supplements. There will never be a "magic pill" or procedure to "rid" someone of autism.

So, with all of that in mind, these same people continue to attack those on the ND side of things. We are called every name in the book. There is plenty of confusion as to what Neurodiversity means (as well as what Autism awareness should be), and what so many of us are fighting for. For me, and for most of the parents I know, we are fighting for better services for our children. We want programs created and funded now for teen and adult autistics. We demand better teacher training, employer seminars, first-responders' awareness on autism. We see a dire need for better options for autistics and their families: living arrangements, vocational and education programs, and so on. We also desire our children to be accepted by society, and at the very least tolerated in our communities. We want the world to embrace our child, and see all the gifts we see (for all our children, all over the spectrum).

Our concerns stem not only out of the love we have for our children, but from our fears that arise hearing about stories of abuse. Talk about intervention and treatments (that are respectful to autistics), yes. But how can any of us spend another minute blaming vaccines and promising cures, when our children are being abused, neglected, and killed?

Gabriel Poirier was nine years old when he was suffocated to death at his school. The details of his death are horrifying, and we yet to have all of the facts (like, why the teacher thought this was a viable option?). From The Gazette:

On April 17, Gabriel began to disturb his class with loud sounds. After being told repeatedly to calm down by a teacher, he was rolled in a weighted blanket. With his arms by his side, he was left on his stomach for over 20 minutes with only his toes exposed.

When the teacher went to check on him, he was "listless and blue in the face," the Coroner's report said. The teacher called 911 but the boy was already in a deep coma and passed away the next day in the Sainte-Justine hospital.

"He was a very gentle boy. Sometimes he was loud, but he was never aggressive or violent," Gilles Poirier, the boy's father, said today.

The parents' lawyer, Jean-Pierre Ménard, said vulnerable children like Gabriel need better protection.

"We're asking Minister Courchesne to implement a legal framework to regulate how these children are handled," Ménard said.

To think of how terrified Gabriel must have been as he gasped for breath, and the pain his parents are feeling--we cannot look the other way. My heart goes out to his family and friends. We must all learn from Gabriel's story, and not let his death be in vain. This is yet another wake-up call: our attitudes toward autism and autistics needs to change. What is it going to take to for all of us, autism parents and society, to come together and ensure such a tragedy never happens again?

In the words of Gabriel's father:

"Things, or action should be taken to prevent this, to never happen again."

For more information on how you can get involved, please visit these sites:

End Abuse of Children in Residential Programs: ACT TODAY!

APRAIS - The Alliance to Prevent Restraint, Aversive Interventions, and Seclusion

CAICA - Coalition Against Institutionalized Child Abuse

Jennifer Lopez Sings For Autistic Students

This is a pretty cool story:

NEW YORK — Students at a Staten Island, New York, elementary school for autistic children sure like the way Jennifer Lopez moves.

Teacher Kathy Amati and a paraprofessional showed the video for Lopez's "Let's Get Loud" to the students at P.S. 37. The children liked it so much, they wanted to watch it every day.

They learned the lyrics and the dance moves from the video.

With their teacher's encouragement, they wrote to Lopez, hoping for pictures or an autograph. Instead, she asked to come to their graduation.

On Tuesday, the singer-actress performed "Let's Get Loud" for a group of eight 10- and 11-year-olds at their graduation ceremony.

I applaud Jennifer Lopez for giving those children such a wonderful graduation gift! I also salute the teacher & para who brought music--singing and dancing--to these kids. Sounds to me that these are the types of teachers we need teaching our autistic children (perhaps something other educators could learn from). Also, it's nice to read a positive story on both school staff and autistic students.

I was so pleased to find out my daughter's school has weekly music therapy. That is probably one of her most favorite things from school. And, nothing fills me with more joy than seeing my little one sing and dance...

Inclusion

Following the Alex Barton story, the topic of inclusion was one many were discussing. Friends and family have talked to me about it. I think, first and foremost, inclusion has a place and should be available to every child. I'm a big believer that not only do disabled students gain from an inclusive setting, but that the typically developing peers gain a enormous amount (tolerance, understanding, to name two) as well. I also feel that inclusion is not always the answer, not all the time. Some children do better in a small classroom setting. Some need more supports and services only available in a special education class. The bottom line is this: inclusion should be available to every student. "All qualified persons with disabilities within the jurisdiction of a school district are entitled to a free appropriate public education." For some that will mean a (separate) special education setting, for others mainstreamed with typically developing peers, and still for others, a mix of both. Whatever the individual outcome or placement, the goal should always be in finding the most appropriate setting for each child.

My daughter is in a special education program at this point. Our district, and truly our state, is not one that has wonderful services for autism (or anything else under the special education umbrella). I don't even know if I could call the services "bare bones," as that seems like giving them too much credit. We have talked seriously about moving, especially when our child gets older, to have more services (specifically ones catered to her needs). I would say only about 60% of her needs are being addressed and met in her program. We supplement with private therapies and accommodations (provided by us).

There is discussion of mainstreaming her in a year, that is the goal for this upcoming IEP. Part of me is excited to have my child in that setting--in the event she is supported and it is a positive experience. Our school primarily opts for pulling children out for services, and is not quick to offer a para to a child. For parents like us, we are left having to decide whether we risk our child having a negative experience (too many students, lack of routine and understanding, not enough supports, etc.) in a regular classroom or if we are holding her back by keeping her in a special ed class. We should have more options available, but sadly, there are not. So, we begin to focus our thoughts on inclusion and making it work.

I have found some websites that look to be helpful (I've only spent a bit of time on each):

PBS Parents - Inclusive Communities "Learn about improving the overall quality of life for children with or without disabilities by promoting inclusion and respect for differences."

Paula Kluth's Inclusive Classroom Site
"Toward more inclusive classrooms and communities"

Inclusion Connection
It is the mission of the Inclusion Connection to advocate for persons with disabilities, supporting them in realizing self-determined lives, educating families and promoting inclusive communities.

Celebrating All of Us

Operation Respect "The inclusion of children with special gifts and needs in a compassionate environment that allows peer recognition of the unique character of each child or adult produces what can only be viewed as an island of humanity, caring, respect, and peace." - Peter Yarrow, founder of Operation Respect

Positively Autism has some information on inclusion, including this study:

Positive outcomes have also been reported for children with autism who participate in inclusive programs. According to a review of research conducted by Levy, Kim, and Olive (2006), the presence of typically-developing children in educational programs for children with autism was reported to have positive effects on social skills and behavior for the children with autism. In a report on an inclusive preschool program by Jan S. Weiner (2002), it was reported that one-hundred percent (nine out of nine) of the preschool children who completed the inclusion program (three of whom have autism) went on to attend a general education Kindergarten classroom, versus a separate special education classroom. This is a very small number of participants, so we do need to keep in mind that these results may not be typical for the larger population, but I think that the results are encouraging. Additionally, three out of the four preschools that participated in the project elected to continue their inclusion programs, even after the research funding ended.

Lisa Jo Rudy points out that inclusion just may not work for everyone. That's something many of us can relate to. I think each student should be looked at as an individual. Simply carrying an autism diagnosis should not pigeon-hole that child into special ed. Likewise, just because another autistic child was successful being mainstreamed, that does not mean it will work for every other student.

It's interesting, I've known parents on both end of the battle: those who are wanting more special education services for their autistic child and those who are pushing for inclusion. I think schools need to start with a clean slate each time a new child enters their district. The administrators and those who play a role in the student's placement should be free of prejudices and the stories of past children. History can play a nice role as far as recommendations, though. For example, "this" worked for another student and we wonder if it is a good option for this child. Aside from that small use of past experiences, it's important for schools and parents to come together, and devise a child's unique plan for educating each autistic student (hence, the name individualized education plan!).

Society's Sad State

I was reading Odd One Out in the days immediately following Alex Barton's reprehensible ousting from his first grade class (a la Survivor). I was so deeply affected by the post on this inexcusable act. Primarily on the comments that Lastcrazyhorn had compiled and was writing on. I was outraged and then very saddened by the bias and ignorance I was seeing. Suggestions like this child just needed some discipline, or that his behaviors were due to poor parenting, or commending this teacher for bringing order back into the classroom, honestly make me wonder what country we live in and exactly what year it is.

The case of Alex Barton has done two things. For one, it has brought Autism, inclusion and mainstreaming, and special education into the public eye (at least temporarily). All the major news stations covered the story in some form or fashion. Furthermore, the story has brought bloggers together all across the world. I've seen bloggers who have no connection to autism writing on it; others whom I have many disagreements with are just as passionate about this child's rights. It's been amazing to see us, once again, all come together to make change. We do have to remember that this is far from over--both for Alex and for the rest of our children. So, we need to keep writing those in the government and making our voices heard.

The other thing this case in particular has done is clearly brought forward how a great many in society truly feel about autistic individuals: put them away. The vast majority of us parents speak about how relieved we are to be living in a day where we do raise our children. Gone are the days that we are forced to (or strongly advised by our physicians and others we trusted) institutionalize our children (well, in most cases: please read about Nate Tseglin). However, it seems that a number of people would prefer we do just that. They don't want our kids interfering with their child's education. They speak of our kids as if they have some rancid, contagious disease. One that if our kids area allowed in their child's classroom, will seep through and infect the whole school. They claim it's unfair for their child to be in a room with our child. Unfair? Why? Because our child may help your child learn about tolerance and acceptance? Because they may learn to not judge a book by its cover, once they get to know our child? I'm sorry those lessons are so appalling to these parents.

I hate to break it to you who think my child will so horribly disrupt your child's education that she should be dumped somewhere else: my kid isn't the only one having issues in class. Have any of you spent time in a public school classroom? In Vanillaville, USA, you are going to see a SPECTRUM of children in any given room. You will have kids of varying intelligence and skill sets, children who have learning disabilities, health issues, and those that are gifted. You are going to have kids who are poor, kids who are rich, and all those in between. There are going to be adopted kids, foster kids, kids whose parents are divorced, and so on. You may want to point the finger at my child and say she is the one affecting your child's education--but really, can you prove that none of those other children do?

My oldest child is in fact labeled "gifted and talented" based on an evaluation (IQ score, plus various tests of knowledge and ability). She is in a classroom with children of varying abilities, and all those differences I mention above. Do I sit and whine that any of those kids is disrupting my kid's education? No. She is in public school, that's all part of it. She does have a few children in her classroom that receive special ed services. I've witnessed a meltdown by one of her peers, another child who is literally unable to sit still, and another who has significant trouble with reading. Shall I begin a protest to take these students out of my child's class? I would never. School should be a place where children learn to be good citizens. That is still a part of today's lesson plans, right? I want my daughter to acknowledge and accept children who are different from her. I don't want my daughter to judge a peer based on their skin color, family situation, physical appearance, or so-called "behaviors" ala Autism.

If you feel that my autistic child, or any other autistic, disabled, or different kid is so horribly affecting your child's education, guess what? You have a choice. Go to private school. I'm sure there are some better-suited schools out there--you know, ones where only blue-eyed, blonde-haired, strong, "neurotypical" children are accepted (I wonder if there are any schools who support a program like T4, that may be more your liking). People will say I'm crossing a line, that these views of society in 2008 are nothing like Hitler. I beg to differ. I think many would agree that if and when a prenatal genetic screening for autism is available, abortion will become common place, as in the case of Down Syndrome. We have professors speaking--and smiling--at universities, about eugenics.

This is the state of our society today. In this country, it is touted that we are the land of the free, and that each citizen has the same civil and human rights. This is not the case when it comes to disabled persons. What have we learned from history? Why are so many unwilling to give our children and autistic adults a shot? Why is there such intolerance and ignorance? It is my hope that through Alex Barton's horrible experience (and, sadly, many others) that a dialogue can begin. I want real change, for my child, for the many other individuals I've come to know on this journey. I can only hope that society is ready to listen.

What Is Going On In Virginia???

Thanks to Ian Shapira of the Washington Post for giving this national attention. The Virginia Board of Education is trying to change their special education laws, giving even less power to the parents. I know many of us have struggled at I.E.P. meetings, not always seeing eye to eye with the school district. For some, it's an even bigger battle--one where the school refuses a physician's diagnosis, denies services, or worse still, employs use of restraints, and the list goes on. It's become common practice for families to hire advocates, and all too often parents end up in court to fight for their child's right to an education. From the Washington Post article:

A proposed revision of Virginia's special education rules is triggering widespread protests among parents of disabled students, who say it would strip them of power in negotiating their children's education.

Currently, school systems must obtain parental consent before eliminating such services as speech or occupational health therapy. But the state Department of Education is proposing that schools be allowed to suspend them without such consent. If a parent objects, the service would be maintained until the matter is settled through dispute resolution.

So now Virginia wants to make it even more difficult for us parents to have a say in the matter (of our own child's education!). These new "rules" would mean that the school can take away services without parental consent. As you take away the rights of parents, this opens a can of worms. If you don't need to have a meeting or discussion with the parents to discontinue speech therapy--who's to say the school will claim they don't need the parents' consent to use restraints? Honestly, who thought this change was a good idea? The last thing the state or school districts need are more say when it comes to our children's IEPs.

The parents in this town are protesting this new proposal. I don't blame them at all, and I certainly support them. Hopefully their voices will be heard (yours can be heard here). If you live in the area, the article lists information on public hearings:

The department, which has received 3,000 comments on the proposal, has scheduled public hearings across the state, including one from 6:30 to 9:30 p.m. May 15 at Freedom High School in Loudoun County and another from 6:30 to 9:30 p.m. June 2 at Oakton High School in Fairfax County.

The good news, for the parents in Virginia, is that their governor has answered their calls, and has many concerns with this plan:

I have reviewed the proposed regulation on a preliminary basis. ... I would like to express some concerns that I have – concerns that parents across the Commonwealth have shared with me. Virginia has long been a leader in the area of parental consent and involvement in the special education process. I have concerns about proposals in this regulation that reduce parental involvement in key decisions made about their children. These include, but are not limited to:
1. Elimination of parental consent prior to partial or complete termination of or changes to special education and related services.
2. Elimination of parental consent before providing special education services for transfer students.
3. Removal of parents from the Functional Behavioral Assessment team.
4. Addition of an option for the Local Education Agency to refuse a parent’s request for an Individualized Education Plan meeting if the LEA considers the request unreasonable.
5. Reduction in the number of regular progress reports given to parents on their child’s Individualized Education plan.
I do not currently see any circumstance under which I would approve a final regulation reducing parental involvement in these ways. I urge the Board of Education to take this and other public comments into account regarding these provisions and to act accordingly prior to submitting a final regulation for my approval.

Hopefully, the governor keeps his word, and this will be a proposal that goes nowhere. It's likely that in the end, the only harm will be wasted time, paperwork, and money. We can't forget the unnecessary raising of stress levels for the parents involved. All this, thanks to the Virginia Dept. of Education's ridiculous attempt at being more efficient. Right.