Scott

Scott was born in March of 1969.  A full decade before the disabled were really seen as people.  The child that made my parents, parents.  Perfect to look at, a beautiful boy with his dad's eyes. As a first child my parents had no reasons to believe that Scott was anything less then perfect.

There's five weeks out of the year that Scott and I are the same age.  During that five weeks my mom likes to mess with people and cheerfully announce she has two *insert whatever age I just turned* year olds just so she can get told "I didn't know you had twins!" and she can say "I don't."

Mom's told me how she went in with her newborn and asked about birth control and was told she didn't need birth control, she was pregnant.  In complete shock, my mom told her doctor, she already had a baby, newborn Scott being proof.

I was unplanned and unexpected but that doesn't mean God didn't have a reason for sending me immediately to my family.  You see, I was precocious.  I walked at ten months, I was speaking sentences at 18 months, I potty trained myself, having learned just from watching my mother struggle teaching Scott.  As I developed, my parents were able to see that something wasn't right with Scott.

A pre-schooler in the early '70's with undiagnosed delays was pretty much living the nightmare.  At that time doctors blamed mothers.  It was my mother's fault her son didn't speak and didn't interact with others.  One time mom was told that it was my fault.  I was hindering my brother and we should be kept apart so Scott would have a chance to develop on his own and not be intimidated by his baby sister.  

Now we know, it's nobody's fault and it doesn't seem possible that a mother seeking help could blamed for something completely out of her control but happen it did.  My parents had the sense to not let some doctor's ignorance hinder their search for answers.  By the time Scott was six, they finally had a diagnosis.

Autism.

I didn't realize this until I was an adult but there were other issues at this time my parents dealt with, like a seizure disorder.  Before my memories, Scott had seizures.  Scott also has severe OCD.

When I was five, I remember riding the bus to Kindergarten.  What I didn't know was that my mom was fighting to get my brother in school.  Mid seventies teachers still tested kids to make sure they were ready.  You had task to complete in a certain time or your parents were told sorry, no school for you.   So here was my mom, with a child desperately needing help, more help then any one person could give and they didn't want him at school.

Anyone with special kids needs to know that it was people like my mom, that attacked school policies and paved the way for every child to have the right to be educated.

I've been trying to recall what I remember from those early years.  I have snippets of pictures in my head.  Making mud pies on the steps of our trailer with Scott.  Running and yelling in the yard.  Being so close in age, as Scott's younger sister, he was my friend and I had no idea that it should have been different.  He should have been different.

My dad told me a story once, classic autism at work.  When Scott was two, the Christmas tree was set up.  Sparkly lights and pretty tinsel all shiny and bright.  Scott pointed to the tree and said to my dad in a very loud voice "Christmas tree" and then never spoke again.

Kids that don't speak act out in frustration.  For Scott that morphed into severe pinching and biting.  When he pinched he would grab hold of a solid inch of flesh and squeeze while twisting with great tenacity.  Biting was the same, griping with teeth and biting down with pressure like a nutcracker cracking nuts.  I grew up with bruises on my arms and legs, we all did.

Fifth and sixth grade I went to the same school as Scott.

It was mortifying.

You know the click you hear right before the PA system goes on.  I dreaded that click.  You see, that click would happen, a moment of silence would envelop the classroom as everyone would pause, waiting to hear what would be said.  Then this awful shrieking would fill the building, coming from the PA, echoing down the halls of the entire school.  This urgent voice would loudly (you know, so it could heard over the awful shrieking) say "Mr. Charest, please come to the office, Mr. Charest, please come to the office."

I dreaded that voice.

I never said, oh that's my brother out of control but the kids knew.  I remember once walking to school, there were kids in front of me and behind me.  There was as sweet little bouncy girl that started skipping by me, I said hi and she said hi back.  Her brother and his friends hurried forward with the brother speaking to his sister while glaring me.  He said "Don't talk to her, her brother is retarded, she's probably retarded too."

Devastating. 

For middle school my mom had me walk my brother to and from school.  It was isolating. No one wanted to walk with me.  What was really tough was the adults that didn't understand.  There was a separate door for the special education kids, if that door was locked, I had to go in the building.  Students weren't allowed in the building before the bell rang but I just couldn't try to keep track of Scott in the yard with all the other kids.  They wouldn't understand him.

They would tease me.

So I would go in the front door, tell the secretaries I was taking Scott to his room and they would smile and wave.  They understood.  I dreaded meeting any teachers in the hall because they were always hostile, demanding to know why I was in the school before the bell.

It wasn't all tough.  There was humor and laughter.  The absurdity of the situation.  Crazy Scott stories that are worth retelling a thousand times.  I'll save those for the next post.

As for this one, it wasn't easy growing up with Scott.