When It Is Time To Bow Out

Groups are difficult for Sam.  This is one of our most recent experiences in a group activity...

"You can't tell me what to do!"   I am sitting a few feet away and my ears tune in.

"Don't look at me!"  Still sitting, my full attention is on Sam while he is shouting at some boys.  I sit with the woman who is taking my money for camping and she says nothing.

"Stop looking at me!"  Now everyone's ears are tuned in.

"It isn't funny!"  I look and nobody is laughing

"I can't stand this!"  I get up to intervene.

The first thing I did was sit in Sam's line of sight to block out the stimuli.  The most wonderful woman in the world is sitting next to me and she said to me, "Wow, why didn't I think of that."

The kids go to the front of the very big room and all Sam wanted to do was to go home.  We couldn't leave until the ending ceremony.  The leader of the group, who recently took over leadership, came up to me and said, "I am worried about camp because it is 16 campers to 5 adults."  Instantly I knew that he was implying, "We don't know what to do with Sam."

The stimulus was too much and other people's knowledge of Sam's disability was too little.  I sat there and knew that I had to pull Sam out of this group.

Just like the principal makes the school, the teacher makes the class and the leader makes the group.  It is nobody fault that the leader of the group, that recently resigned, was more aware of disabilities.  This is the thing,  the leadership went  from superb to good.  Again, nobody's fault.  In a matter of a few weeks Sam was voicing that he didn't want to attend.  He knew he wasn't accepted.  He told me that people didn't like him.

Memories crash in.  Because of my mental heath, I wasn't accepted when I was young and I certainly didn't fit in.  I remember as a little girl, a group of kids decided that in order to join the group you had to jump out of the tree.  Maybe that truly was the initiation or they knew I would be too afraid to jump out of the tree.  I had to go home.

Where do my memories and Sam's experience make any sense?   How do I know what really is reality?  All of these experiences, his and mine, are thrown into a whirlpool where thoughts, memories, experiences are all jumbled together in a chaotic mess.

My job is to protect Sam.  My job is also to allow him to experience life.  Sam was slamming his feet and covering his ears with this look on his face that clearly communicated to me that he was in physical pain.  Sensory integration is real and it hurts.  Anyone can read any autobiography from any person with Autism and they will tell their story of their sensory integration disorder.  I reiterate, it is a reality for our loved ones with Autism.

I sit with Sam and I continue to experience the crashing of thoughts and feel the pain of hurtful memories.  "You need to beat that child!"  and "If that was my child he would know who was boss!"  I can't shake the most hurtful memory, "You need to leave the store, you can't stay here."  Yes, my child was running frantically up and down the isles.  Yes, my child didn't have any shoes on.  All I wanted was for someone to help me grab my groceries so I could scoop up my child.   All I got was stares.  This all happened in one of leading grocery chains in the country.  While stroking Sam's arm to comfort him, I wonder if this is what people are thinking.

The end result was that I did pull my child from the group.  I also got a refund for the camp.  I will probably tell Sam that this group doesn't meet during the summer and it is a school year activity.  There is another group that Sam participates in that ends for the summer.  I am not entirely sure but he might not ask at all.  Sam is a "what are we doing right here and right now" kind of kid.  Sam lives in the moment.

I think of the positive.  I met the most wonderful woman that was a co-leader of the group.  I am thankful that I met her.  She adored Sam and Sam adored her.  Sam felt accepted.

So I leave with this thought.  Was it my responsibility to stay in this group to try to educate them about Autism?  I personally don't think so.  Was it my responsibility to keep Sam in the group to teach him about living while feeling extremely uncomfortable?  Maybe some would argue that I am not doing him any favors.  I really don't know the answers to these questions.  Sam is wired differently because of his Autism.  I am am doing my best to teach him that he is "different not less".

Definition of Mental

1. a: of, relating to, or being intellectual as contrasted with overt physical activity.

2. a: of, relating to, or affected by a psychiatric disorder <mental patient>.

b: mentally disordered, mad, crazy.

I choose being an intellectual as my definition of being mental.

*The photo that I use for my background was taken by Sam.

The Meeting

My hands are trembling.  I look down and see that familiar wiggling of paper that is being held by my uncooperative extremities while willing my body to stop.  I feel that familiar buzzing in my head and I know they can see me shake.  "You can do this! You can do this!" is drumming in my head.  Finally I am defeated.  I can't do this! I am trapped!  I am an animal with no way out except to attack.  I AM OUT OF HERE!

If someone was to ask me to write a quick synopsis of this mornings meeting, the above is what I would have to say.  The meeting didn't go well, not even a little bit.

When Sam was little, he and I were bullied by a group of Moms at our low income place that resembled my perception of hell.  They used to dump dirty diapers under my window and call management. They also would teach their young kids to beat on Sam.  I made a meeting to try to have the establishment help me and they organized their attack ahead of time planning on how they would band together to make me the villain.  This is the flashback I was having while I was staring at a piece of paper that the school got together in advance to plan what they would say so Sam and myself had no voice.

Concerns of 12:1:1 team

1.  Student safety and safety of others.
2.  Disruptive and dangerous behaviors which include; yelling, screaming, crying, ...... I don't need to continue on this one.
3. Aggression toward peers and staff
4.  Self-injurious behaviors
5.  Bolting
6.  Blocking entrances/exits
7.  Unpredictable behavior triggered by apparent mood swings
8.  Intensity and duration of outbursts
9.  Sleeping
10. Student complaint of tremendous sadness
11. Inability to take any adult direction
12. Inability to complete any kind of academic work.

Student Needs

1.  Full time mental health
2.  1:1 paraprofessional assistance
3.  Autism hours
4.  Time out/calm room
5.  Asssistive Technology

The rest of the paper said what they tried and it listed around 30 items.  There was no possible way they could have tried all of these things in such a short amount of time.

This is the paper I was holding while my body was starting to go into fight or flight.

How does someone respond to this?  He needs the Time Out Room AKA Seclusion Room?  They forgot to list he needs to be restrained because Sam would never just walk calmly to a time out room when he feels he is backed into a corner.

This is what Sam tells me about restraints and the use of seclusion rooms.  "Mom, I am bad  because they tell me I am bad."  What they say is, I am supposing, "Sam if you made better choices these bad things would not happen."  My son has Autism and his brain is wired differently.  My son is also 95% successful in the community.  Anybody that follows us knows that Sam is not a violent person nor is anyone afraid of him. He doesn't swear and he doesn't break anything in the home. The last thing he added about his new school is that he confided in me that the social worker would scream at him saying, "HOW DO YOU LIKE IT WHEN SOMEONE IS SCREAMING AT YOU!"

The reality is this.  There is no place for Sam.

So I sat in the meeting and they made their attack.  I attacked back saying that it is the educational system that has abused Sam to the point where school is a trigger and he continually went into fight or flight.  I tried to make my argument that they had an outdated Fuctional Behavioral Analysis and all the Behavioral Intervention Plan says is to give him three warnings and if he doesn't comply he is restrained and put into time  out.

We had three formal allegations of abuse last year against a school where multiple people have contacted me telling me about their child's bruises.  It is sickening.

The ending point of the meeting is when the social worker said that Sam was traumatized in my home before he entered the school system.  Again, it is the Mom's fault.  I was stupidly honest about a few things in my life with emphasis that my life has been on the right track for 8 years which is when the restraints and seclusions started.

Sitting in that meeting I completely understood how Sam felt.  I got up, grabbed my stuff and said as quickly as possible before I fell into a lump of volcanic tears, "We are tabling this meeting, I am calling my lawyer and I will get my team together.

It was one of the worst days of my life.  I sat there alone with nobody to guide me or assist me.  It will be different at the next meeting.  I am a fighter and I am getting my ducks in a row.  This is not my fault.  Sam is diagnosed with Autism and he has been traumatized.  End of story.

My letter to the CSE Chair

From Lives in the Balance

Now, this comic really isn't funny at all.  Kids with behavioral challenges are often on the receiving end of physical, chemical, and mechanical restraints and locked-door seclusion.  And, regrettably, there are still people who think these procedures are "therapeutic" (even though several children and adolescents die each year as a result of such procedures).  In fact, such procedures are usually just acts of desperation that are employed because a child's lagging skills and unsolved problems haven't yet been identified, adults are still viewing the child's challenges through obsolete lenses, and intervention is still primarily emergent (rather than proactive) and punitive (rather than collaborative).

For me and Sam, an environment where Restraints and the use of Seclusion Rooms is not the answer.  It is now my job to find the support I need for Sam to get the proper evaluations to find the lagging skills and unsolved problems.

To be totally honest, I feel that you twist my words to use them against us. Sam is 95% successful in the community and 99% successful in the home. It is not his mental health that is failing him it is the educational system.

The Social Worker from the new school called me and he said that the Behavioral Intervention Plan was not of any use to them. In his words, he said, "We need to know what drives Sam's bus." He said that the only thing written in the BIP was to restrain Sam and put him in Time Out (Seclusion Room). He also said that the only alternative was to escort Sam and his exact words were, "I am sorry but an escort is dragging the kid, kicking and screaming to Time Out (Seclusion Room). 

Sam's trauma stems from 6 years of abuse. We had three formal investigations from Sam reporting to me the abuse that he endured by those "Security People" at his old school. I am not putting Sam in a Day Treatment which is the Most Restrictive Environment just because our school district won't help us evaluate Sam to get to what drives "his bus." I also need to add that the Functional Behavioral Assessment  was outdated.

I am building my team and I will hand in the pediatrician's letter stating that Sam is "medically unable to attend school." The pediatrician will help us until the evaluations are completed so we know what drives Sam.

Sam is a creative kid who finds safety in his creativity. The tutor called me and asked me what "supplies" he had. I told her that if she came with a notebook and worksheets she would not have success.  She came with a notebook and around 50 worksheets. She may say that she was successful but I was there.  Sam was frustrated because again, nobody is listening to Sam and what he communicates as to what his needs are.  Sure enough, she is bringing colored pencils. Sam needs hands on with a manipulative driven curriculum that addresses his need to be creative.  Scribbling on a piece of paper doesn't cut it.

Please let me know when the CSE is and Sam will not be joining us. The first order of business is to change his classification to Autism.   I have documentation from our Autism Clinic that says that this is what they recommend his classification to be.   I will bring this documentation to the meeting.

I will hand in the letter asking for (per my advocate) any evaluations, including educational evaluations, that have been completed on Sam.   I am also asking for all notes, from the past two years, of the CSE meetings.   I have been told that the comments from the IEP are not the notes from the CSE.   I will tell the school to put in writing all the things that are not available to us and I will show the advocate and she will help me get what she needs to help us.

One last thing, I know you have one of the hardest jobs in the world and I couldn't do what you do for a living.   I also have one of the hardest jobs in the world that I can't walk away from.   I have the deepest respect for you and your reputation stands on its own. You work for our district  and our district and its educational system is who I am angry at.  Not you.   I will fight until he is 21.   My son deserves an education that addresses his needs as an individual.   

Sam is not a child to lump into one category under Mental Health. Our kids with Autism, yes that is his primary diagnosis, have a very high co morbidity rate. The reason why I will fight to change the classification is because 1. Autism is his primary diagnosis and 2. I never want to hear that he has "Autism like" tendencies again. He doesn't have "Autism like" tendencies. Sam is diagnosed with Autism and he deserves the services that are included under that classification.

I have attached the picture of Sam in my arms because this photo was taken one week before the Mental Hygiene Arrest.  This is a picture of Sam despondent because he didn't want to go to school where they hurt him.  It is this picture that motivates me to find a better solution, which includes data from evaluations and best practices, for Sam.

Debra

Definition of Mental

1. a: of, relating to, or being intellectual as contrasted with overt physical activity.
2. a: of, relating to, or affected by a psychiatric disorder <mental patient>.
b: mentally disordered, mad, crazy.

I choose being an intellectual as my definition of being mental.

*The photo that I use for my background was taken by Sam.

w, this comic really isn't very funny at all. Kids with behavioral challenges are often on the receiving end of physical, chemical, and mechanical restraints and locked-door seclusion. And, regrettably, there are still people who think these procedures are "therapeutic" (even though several children and adolescents die each year as a result of such procedures). In fact, such procedures are usually just acts of desperation that are employed because a child's lagging skills and unsolved problems haven't yet been identified, adults are still viewing the child's challenges through obsolete lenses, and intervention is still primarily emergent (rather than proactive) and punitive (rather than collaborative).

This is not the answer. It is now my job to find the support I need for Sam to get the proper evaluations to find the lagging skills and unsolved problems.

To be totally honest, I feel that you twist my words to use them against us. Sam is 95% successful in the community and 99% successful in the home. It is not his mental health that is failing him it is the educational system.

Jay called me and he said that the BIP was not of any use to them. In Jay's words, he said, "We need to know what drives Sam's bus." He said that the only thing written in the BIP was to restrain Sam and put him in Time Out (Seclusion Room). He also said that the only alternative was to escort Sam and his exact words were, "I am sorry but an escort is dragging the kid, kicking and screaming to Time Out (Seclusion Room). Sam's trauma stems from 6 years of abuse. We had three formal investigations from Sam reporting to me the abuse that he endured by those "Security People" at Bird/Morgan. I am not putting Sam in a Day Treatment which is the Most Restrictive Environment just because Greece won't help us evaluate Sam to get to what drives "his bus." I also need to add that the FBA was outdated.

I am building my team and I will hand in the pediatrician's letter stating that Sam is "medically unable to attend school." The pediatrician will help us until the evaluations are completed so we know what drives Sam.

Sam is a creative kid who finds safety in his creativity. The tutor called me and asked me what "supplies" he had. I told her that if she came with a notebook and worksheets she would not have success. She came with a notebook and around 50 worksheets. She may say that she was successful but I was there. Sam was frustrated because again, nobody is listening to Sam's needs. Sure enough, she is bringing colored pencils. Sam needs hands on with a manipulatives driven curriculum that addresses his need to be creative. Scribling on a piece of paper doesn't cut it.

Please let me know when the CSE is and Sam will not be joining us. The first order of business is to change his classification to Autism. I have documentation from Kirsch that says that this is what they recommend his classification to be. I will bring this documentation to the meeting.

I will hand in the letter asking for (per my advocate) any evaluations, including educational evaluations, that have been completed on Sam. I am also asking for all notes, from the past two years, of the CSE meetings. I have been told that the comments from the IEP are not the notes from the CSE. I will tell Sylvia to put in writing all the things that are not available to us and I will show the advocate and she will help me get what she needs to help us.

One last thing, I know you have one of the hardest jobs in the world and I couldn't do what you do for a living. I also have one of the hardest jobs in the world that I can't walk away from. I have the deepest respect for you and your reputation stands on its own. You work for Greece and Greece and its educational system is who I am angry at. Not you. I will fight until he is 21. My son deserves an education that addresses his needs as an individual. He is not a child to lump into one category under Mental Health. Our kids with Autism, yes that is his primary diagnosis, have a very high comorbidity rate. The reason why I will fight to change the classificiation is because 1. Autism is his primary diagnosis and 2. I never want to hear that he has "Autism like" tendancies again. He doesn't have "Autism like" tendancies. Sam is diagnosed with Autism and he deserves the services that are included under that classification.

Debra

Would I Change the Diagnosis?

I haven't written in awhile because my self concept of my writing skills have been lacking.  Today has been that kind of day when thoughts are swirling in my head like heavy knocks on the door screaming, "Please let me in!" and the only way to make them stop is to write them down.

I looked through my old posts and I could have sworn I wrote a post, "Would I Change the Diagnosis?".  I have memories of writing it or maybe I dropped it for fear that readers wouldn't agree with my choice of words.

So, would I change the diagnosis of Autism?  Yes, I would.  I am hoping that readers do not jump to the conclusion that I don't love my son for who he is.  This is the thing that I think of....I don't hate Autism, I hate what comes with it.

I am not going to go into a long winded reason why I would change the diagnosis.  It is simple. I want him to have what my daughter had.  This long list includes, friends, sleepovers, sports, dances, calls on the phone.  The list goes on and on.  The greatest reason of all is that I wouldn't have to see the pain on Sam's face after he has been rejected or even worse having seen the pain after being restrained by the people who were supposed to protect him.  My son's life has been filled with the kind of trauma that is not right, just or fair.

I have had the thoughts, "Was it my fault?  Did my medication that I took cause this?"   People have asked me for advise and this is what I believe, "Once you receive the Autism diagnosis, don't look back.  Don't wonder what caused it or if it was your fault.  Move forward."

I once asked my daughter if she could wave a magic wand to change her life to being an only child, would she do it?  This was her wisdom filled response, "No, I wouldn't know what I know."  I believe that even though I would change the diagnosis, if you asked Sam as an adult if he would he change it, he would say, "No, I wouldn't be the person I am today."  We are all on this journey for one reason or another.  For this reason, I now embrace life which includes my son, his different abilities and yes, Autism.

I find comfort in the list of people who have or have been believed to have Autism.  World renowned thinkers, leaders and  inventors including Emily Dickinson, Albert Einstein and even Thomas Jefferson are responsible for shaping the world that it is today.

Am I thankful for Autism?  Yes, mostly because I am thankful for my son.  I believe that Sam is among one of the greats who will make an impact on the world.  I believe he already has.

I leave you with this.

Definition of Mental

1. a: of, relating to, or being intellectual as contrasted with overt physical activity.
2. a: of, relating to, or affected by a psychiatric disorder <mental patient>.
b: mentally disordered, mad, crazy.

I choose being an intellectual as my definition of being mental.

*The photo that I use for my background was taken by Sam.

My Letter to the Congresswoman

Congresswoman Louise,

Thank you so much for the opportunity you have given Sam to be your "Official" Campaign Photographer. One of the lessons that you have taught him is that with hard work and dedication you can be successful. I would like to take a few minutes of your time to make you aware of what is happening to your personal photographer at the Morgan Campus #1 BOCES. There is a windowless closet on the second floor at the school between the bathroom and the classroom. It has a dirty floor where kids become upset to the point where they urinate. The door has a 4x4 window with a gray film and the last time I saw the door, the window was cracked. Sam has been restrained on multiple occasions at this school. Last year Sam reported to me that while he was trying to get out of the closet the security guard opened up the door and pushed him to the ground. This year he said that the security guard crossed his arms around him, lifted him off the ground, took him to the closet, opened up the door, turned and dropped him to the ground. I have tried to investigate but Sam isn't talking. In his words, "It wouldn't help." My child feels helpless in a school that is supposed to be there to help him.  

Unfortunately, the same practice happened to Sam in first grade at the Longridge School in Greece. Their Time Out Closet with the tiny window, the last time Sam was six years old, was just passed the office. I personally witnessed three men on top of Sam face down while waiting for the police to make a Mental Hygiene Arrest. Sam spent sixteen days in a psychiatric institution and he still remembers that time as when "He was bad".

Sam is a depressed boy and this is the reason why I work so hard on his photography. I have to work twice as hard every time the school tears him down. His depression is at an all time high this year and it is because he is angry and he says "bad things always happen to me."

I have included the link to the ABC News investigation dated November 30, 2012 that describes harmful practices on our children. If there is one thing you can do for me, it would be to watch this video. Often times these practices are used on our children with Autism. The last death that I am aware of happened to 16 year old Corey Foster from New York City last April. I grieve with his Mom, Sheila Foster, who will no longer be able to hug her child. I fear for my son on a daily basis. I want to feel safe that my child will return home to me.

http://democrats.edworkforce.house.gov/blog/abc-news-investigation-students-hurt -dying-after-being-restrained

It is written in the ABC Report: A recent investigation by the U.S. Government Accountability Office found hundreds of allegations that children have been abused, and some even died, as a result of misuses of restraint and seclusion in public and private schools, often at the hands of untrained staff. Unlike in hospitals and other medical and community-based facilities that receive federal health funding, there are currently no federal laws addressing restraint and seclusion in schools. This is the link to the Committee on Education and the Workforce.

http://democrats.edworkforce.house.gov/issue/seclusion-restraint

I applaud the efforts by Democratic lawmakers in Congress to pass legislation that would prohibit such dangerous interventions. In 2011, Rep. George Miller, the senior Democrat on the committee, re-introduced The Keeping All Students Safe Act (H.R. 1381). The Bill needs to be reintroduced so that legislation can be created for national standards for the safety of children in schools. There needs to be a process of collecting data in a centralized registry where research happens for better practices based on the statistics. As it stand now, us parents fear for our children's safety each day that we send our kids to school. This is a well kept secret that needs to be spoken about.

I am personally on facebook pages of parents trying to make changes. Parents also contact me to see what can be done. I have seen too many photos of bruised children and have heard too many stories of children not coming home to their parents. The deaths of our children go unnoticed.

I would like to leave you with a story of a Mom in Ohio. Her name is Helena Stephenson. She is a survivor of restraints and seclusions. This is the link to her story.

http://www.disabilityrightsohio.org/news/restraint-seclusion-testimony-osbe-marc h-2012

If you can help in anyway, I would be grateful.

The picture I have included was taken by Carol Klino, the Photojournalism student that you met on Friday. It was taken last week.

Thank you,

Debra Pierce Bellare, Sam's Mom

 

 



 

I sent an additional email.

Congresswoman Louise,

This is a video of Paula Cummings, an advocate at St. Joseph Villa.

This is her presentation on the issue of restraints and the need for better regulations to keep our kids safe.  It is a wonderful explanation of what is needed.

http://www.youtube.com/watch?v=ZT682h4RNlo

It would be my honor if Paula and I could visit your office to talk about these issues.

Sincerely,

Debra Pierce Bellare

Should my child learn how to Self Advocate?

It is so confusing to say, "Please look at my child's strengths." when I am looking for evaluations to find his deficits.  There is a quote by Laura Tisoncik "The difference between high-functioning and low-functioning is that high-functioning means your deficits are ignored, and low-functioning means your assets are ignored."  I personally don't believe in the distinction between high-functioning vs low-functioning on the Autism Spectrum because I find it insulting to those who are nonverbal or have that awful R-Word diagnosis.  I would find it appalling if someone said that my son was low-functioning.  Oh wait a minute, Sam is thought of as low-functioning in the educational setting.  It is the same educational setting where both his deficits and his assets are ignored.

What has got me so hyped up is that one of the members of Sam's team, that is supposed to be on our side, voiced their concern that I was causing Sam to dislike school.  What they were saying was that when I talk in front of Sam about the restraints, taking away sensory items, ect., that I was causing more distress that Sam can't handle.  Sam is aware that these are happening because it is happening to him.  So this leaves me with the question of whether or not I should teach Sam how to advocate for what he needs to be successful.  It also leaves me with the reality that those who have fought the system for their own children or are on the spectrum themselves make better advocates.

I don't hide my frustration with the school from my growing boy.  I do my best to explain to him that I have to work within the system to make change.  The actual words are, "Sam, I am making phone calls everyday and at meetings I am doing everything I can to help you get what you need."  Sam usually climbs into my arms and cries.  Crying is good, right?

Through all of my writings, advocacy and outreach I have found amazing people on the spectrum with amazing strengths.  I found a wonderful young woman who sent me to the facebook page Stand Against Restraints, Seclusion, and Bullying by Teachers  https://www.facebook.com/endabuseinschool?fref=ts.  At that page I found another wonderful young woman who I talked with on the phone.  I often message a fellow blogger at  http://www.tinygracenotes.com. These people are self advocating  for themselves and advocating for others through written work, attending rallies and being successful at reaching out to us who need help.  These self advocating individuals are gifts given to me by my son's diagnosis of Autism.  I want to extend that gift to my son.

I know I am going to make mistakes and I hope I cause more good than harm.  I love my child like nobody else can.  I am going to be there for whatever Sam needs at any given time and Sam knows I am working hard for him.  Sam will be thirteen in May.  Isn't thirteen a time in life where one should start to stand up for oneself?  Or should I ask if age 15 would be the year that he should stand up for himself because they say he is developmentally two years behind?  I recently found the Autistic Self Advocacy Network's mantra "Nothing about us without us" with the quote by Tony Coelho, "Self advocacy begins with the understanding that rights are never granted from above.  They are grasped from below by those with courage and determination to seize that to which they are entitled."  I wonder how these folks got to the point of advocating for themselves.  The only thing I know is that I see a boy who is growing up and needs to know that his voice is an important voice that should be listened to.

I know Sam's team member didn't mean to cause me distress as I sat there taking deep breaths to keep the tears from falling.  Maybe I am being unfair by saying that they lost a seat at Sam's educational table.  Life isn't fair. The words hurt.


Definition of Mental

1. a: of, relating to, or being intellectual as contrasted with overt physical activity.
2. a: of, relating to, or affected by a psychiatric disorder <mental patient>.
b: mentally disordered, mad, crazy.

I choose being an intellectual as my definition of being mental.

*The photo that I use for my background was taken by Sam.

*Find more of Sam's photos at https://www.facebook.com/SnapshotsBySamMaloney & http://www.youtube.com/watch?v=TXhzf2Hxhqk