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