Saturday, August 24, 2013

My Heart Hurts

When something happens to one of our Autism kids we talk about it.  We all talk about and it doesn't matter where on this globe called Earth we live.  Autism is a global issue, it is also a Rochester, NY issue and it is where I currently live.

Thanks to Social Media all of this despairing information is available to all of us to share.  The latest news was an injury sustained by a child while in a Group Home at our own Hillside Family of Agencies.  I say the name out loud because the news is already out and the Group Home wasn't named but Hillside was so I am not ashamed to vocally say what agency it was.  I am not ashamed because the school district wants to send my son to a school run by Hillside.

What happened to this child happens to children every day in our country.  I won't go in a play by play but basically he was put in a choke hold and sustained substantial bruising.  What makes this so very difficult for me is that I worked for Hillside.  I worked on their Peaceful Community Initiative to lower the number of restraints in their vast land of services.  I was also trained at Hillside which included training to place children in restraints and seclusion rooms.  I feel sick on how slow the restraints are made with non disregulated people.  They try to have the person come at you full force but face it, there are no real life scenarios happening.  People would look at me with fear in their eyes saying, "I don't want to do this."  They practiced the restraints anyway.  They needed a job, they needed the money.  I sat thinking on how much improvement is needed in the training.  That was the reason why I was there.  My job was to tell Hillside what I thought of the training.  My words didn't mean anything.  I was probably too controversial.  I have to live by my standards and I have to keep it real.  That training sucked.

It is called Hillside Family of Agencies.  Family of Agencies?   Family to who?  Think about it....Family...of...Agencies.  It is a group of people who work for Hillside and it is their family of workers that they are talking about.  I don't know if I need to apologize but this is how I feel about it.  I have been involved with schools for the past 7 years that don't want anything to do with me or my family.  It is what they believe, what they think Sam needs and it is their policies that they abide by.  It is their rules that they stand up for.

Am I angry?  I am so angry I can hardly function.  My mind is stuck on how to help Sam.  It angers me that my advocate from the leading advocacy agency told me that the placement wasn't appropriate.  It was this same advocate that said in the school meeting "Hillside, I have never visited Hillside.  I would love to visit Hillside."   What?  Are you kidding me?  She told me no to Hillside.  She said to me, "That is not an appropriate placement.  You ask them what the definition of insanity is and then you wait for their reply.  You get the power back in your corner."  I can't find the words to express how that feels.  I felt duped.  I am powerless.  Or am I?  That is one thing that I haven't figured out yet.

What is the definition of insanity.  We all know what it is.  It is doing the same thing over and over again without different results.  My son needs a multi-sensory approach to education.  It says so in his IEP.  It was the school district that sat me down and said that they can't force any placement to do what my son needs. Why not?  IT IS IN HIS IEP!  It is also written that they can restrain him and put him in a seclusion room for 20 minutes.  I know that they won't follow the need for a multi sensory approach but they will follow the IEP to restrain him.  Restraining him is a far more easy approach than providing the appropriate approach to his educational needs.  Nobody can tell me otherwise.  I have had too much experience with school personnel that think they are above me.  No, I am in charge.  I make the decisions for Sam.

This is the end all of end alls, I work for my son.  I don't work for Hillside.  People say that you have to be accommodating and disgustingly nice in these meetings.  I don't have to be nice when I write.  I don't have to say that I have to conform to fit their standards.  I don't have to and I won't.  This is my son that I am fighting for.  I am controversial and I keep it real.  I want my son safe.  I don't want to place him in an institution that is known for not involving the parents.  It is a known fact.  It said so in the article.  This particular institution would not comment on the apparent abuse of this child.  I am not surprised.

I have to face facts, I am running on fear.  I am also doing this alone.  I am scared out of my mind.  They don't have a placement for Sam.  Hillside is for families that don't have any alternatives.  It is with a heavy heart that they place kids in their care and non of them do it lightly.   We have a place for Sam.  He is wait listed.  We will wait.



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.  You can find more of Sam's work at https://www.facebook.com/SnapshotsBySamMaloney


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