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 I also need to add that the Functional Behavioral Assessment  was outdated.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