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 I also need to add that the Functional Behavioral Assessment  was outdated.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

One Day Away

When things get tough my mind travels to unpleasant thoughts and scary experiences.  I am under the impression that Post Traumatic Stress Disorder works that way.  This last round about with the school and trying to help my son has left me feeling scared and alone.  I am one blessed person with all of the posts, emails and phone calls I have received from family, friends and colleagues to let me know that I have support.  The actual experience and the knowledge that it is me only that has to work double time to get him into a better placement is what makes me feel alone.

Having this feeling of loneliness is when I start to blog.  Words keep me company as I see the letters spewing onto the computer screen.  I am starting to make associations of my present stress with a more negative experience from my past. The thoughts that are haunting me is when I was one day away from losing my daughter to foster care.

Long story short, at the age of forty I received a diagnosis of having a Bipolar Disorder.  Up to that point my diagnosis was Clinical Depression and my life was a mess.  Wanting to flee my life after college I landed in Seattle, WA. (I am from western NY)  When I was pregnant with my daughter, I decided that I would go off  my psychiatric meds (which were the wrong meds) to protect my unborn child.  I starting slipping a few months after she was born and spiraled down to the point of being semi-catatonic.  I was literally frozen in fear and was unable to care for my beautiful baby girl.  The powers that be that led to foster care decided I was no longer a fit parent. When she was six months old I received a phone call that the next day they were picking her up to take her away.  The words that haunt me are, "You can always get her back."  The day of the phone call I called my Mom and she flew out to Seattle the next day.  The Child Protective Agency never knocked on my door.

I need to fast forward six years.  I sat in a court of law for six months fighting for custody of my son.  My abusive partner decided that he was going to use the defense that I was mentally ill.  I sat in disbelief that my mental health could be used against me.  The unbelievable part to me was that at that time I was mentally healthy.  I knew what I needed to do and say and he didn't win.  That is another story for a different time.

I was thirty six when my son was born so the Bipolar diagnosis hadn't happened yet and my life was still a mess.  I registered for classes at a local psychiatric rehabilitation center and I started to learn how to answer my nagging question, "Who am I?"  It was there that I met so many Moms that lost custody of their children to abusive partners because of their own mental health diagnosis.  I started researching for my book and one day I sat at my computer and read that seventy to eighty percent of parents with a psychiatric disability lose custody of their children.  I sat there with the knowledge that if I had lost Mina that day I would have never gotten her back.

I could post countless photos of my daughter growing up to show what I would of missed but I won't.  I also have my memories to hold on tight to my heart.  I guess what I am trying to say is that once I gained the knowledge that I was so close to losing my baby girl, everyday that she was in my care was a gift.  I cried at every single one of her concerts, plays, sports and all the other activities that she enjoyed.  I am not sure if I cried for myself or for all of those that didn't get to experience the joy of raising a child because of an unfair system.

My Mina is now in college and she is having a great time.  She is an artist and already some of her sketches are in the college archives.  She texts or calls me almost everyday, not because she misses me, but because she wants to talk with me.  We share a special bond and for that I am thankful.  She has been with me through my mental health challenges, Domestic Violence, Breast Cancer, Autism and finally my acceptance of who I am.  I have been single for the past five years and I hope I have taught her that she doesn't need to be in a relationship to be happy.  I believe that I have finally taught her that a person needs to be happy with oneself before a healthy relationship can begin.

My friends refer to Mina as an old soul.  She is wise beyond her years.  I asked her once if she could wave a magic wand and be an only child would she change her life.  Her response was, "No Mom, I would not know what I know."  My Mina is a great example of what our siblings with Autism can become.

My Mina is a shining star.

This is a photo that Sam took of the two of us.

I need to share one more. :)

I love you honey.  Momma Bear is proud of you.

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.

Darn It All To Heck Anyway

You would think that I would know how to back out of a driveway but no, I only look behind me on the right and I clean of my passenger side mirror with a tree.  I got out of the car and cried.  My thoughts quickly went to the fact that again, I have to call my parents asking for help because I don't have a dime to my name.

It isn't the car that upset me.  Things happen and I pull up all the sayings like, "This too shall pass." or "Nobody was hurt." and my favorite, "I am not dying from cancer."  I will take a crushed mirror over whatever ever worse thing that could of happened.  

So let me back up a week.  OK, I need to back up two weeks.  I have mentioned this before that Sam's school is all in upheaval about who will be on his team.  I am thinking the worst and trying to get all the paperwork into the lawyer just in case the worst is Sam's reality.  In addition to that, I made a bad business decision and I walked away $300 in the hole.  Anyway, I am trying to get over myself and it isn't working.

After all of this transpired I was looking forward to talking to a future care planning agency about setting up a Special Needs Trust for Sam so I can finally set up his page to sell prints and have fundraisers for Sam's SLR Camera.  I walked away from the meeting realizing that I would have no control over monies that I put into the trust.  I sit here feeling guilty for wanting to eat well and look nice while networking for Sam.  If something wonderful happened and Sam became wildly successful I would love to set up foundations to help families get what they need for their child for their special need.  It is complicated because I am on SSI and Sam is on SSD.  Sam and I are completely in the hands of the government.  

So for today, I am sitting here trying to figure out if I should be as honest as I am about my life and my hurts. I got this message from my friend Stephanie, " when I see you post things I'm reminded that I'm never alone and yeah, well. thanks so much for everything you do. We appreciate you too :)"  I can"t express in words how much this means to me.

I had the priviledge to listen to an interview with Michael Ricucci from Terra Rising Records.  Michael and his business partner Michelle Akaras are currently in production of a film Music Rising about the power of Music Therapy.  They also do fundraising to help with funding for music in education.  These are two selfless people that I love to follow.

I would like to share what I wrote to Michael.

Michael, I think my favorite part of the interview is the interviewer's question, "What advice do you have to the brand new artist that is hoping to connect."

I listened to what you were saying and I asked myself if I know who I am, what I am saying, and what is my mission with Sam.

In a nutshell this is what I come up with every time I ask myself these questions.  I am a single Mom living in poverty.  I am on SSI and Sam is on SSD.  I want to connect with others as they see me climb out of poverty knowing that they can bring their dreams to reality.  I want people to learn what Sam's Autism really is and that is just isn't me taking Sam out to take wonderful photos and all this magic happens.  In addition to that I want people to get an idea of what living with a Bipolar diagnosis is and how it is manageable.  I want Sam to have a life where he isn't living off of $721 a month on SSD or SSI.  Temple Grandin says, "Living on Social Security if not a job choice."  I also have my dream of being a writer/speaker about our travels and experiences.

I am hopeful that others will be inspired by my story.

My biggest dream is that if my daughter needs help financially because she has mountains of bills from college  that I can help her.  As it stands now, I have a lot of work to do.

To all of my readers, I so appreciate all of you. To all of my photographer friends, thank you for inspiring me.

Sincerely,

Debra Pierce Bellare

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.