Thankfully, I've only encountered the ignorance on this journey one time, and it was yesterday. A woman was in my office, and she is someone I encounter in my job quite frequently. She said she heard we were adopting a child, and I confirmed the rumor. She said, "Well be careful. You never know what kind of medical problems those kids can have." I tried to bite my tongue. I just couldn't do it. I told her that we actually already know she has "medical problems," as she's got Ds. She got this shocked look on her face and said, "WHAT?! DOWN syndrome? I mean, is there even a cure for that?" What. The. Hell. I just shook my head and smiled. She followed that flash of brilliance with, "KIM. Those people don't even have a normal life expectancy." I wanted to ask her if she even knew what a "normal" life expectancy is. (PS, it's 78.1 years in the US for a normal life expectancy, and about 60 for a person with Ds.) I seriously wanted to smack this woman. And she questioned, I mean grilled me, about why we would want to adopt "one of THOSE people". Seriously? I had ugly, ugly thoughts about her.
This is one of the reasons we want to adopt one of "THOSE" people.
His name is Clayton, and he's my uncle.
My great-uncle, to be more specific.
His brother is my grandfather.
Clayton was born at home with his umbilical cord wrapped tightly around his neck. In the 30s, that didn't typically end up well. So, my great grandmother's first child (of 5) was born mentally disabled. We all know what that was called then - retarded.
Clayton grew up in the same small town I lived in as a child.
He likes to say that he went to every grade through sixth. Twice.
He did not go to an institution. He lived at home with his family.
Clayton was a member of the community. I have heard stories of boys in the neighborhood getting into fights to protect him at school if someone made fun of him.
Everyone in town knows Clayton.
He has recently moved to a retirement assisted living facility.
He has lived relatively independently, in his own home but with help, for his entire adult life.
He's 81 years old.
He loves to drink black coffee all day long.
He loves gummy fruits that he gets every year at Christmas.
He loves NASCAR and the Patriots.
Clayton never had any sort of therapies, like occupational therapy or speech therapy.
He has had jobs. He's never been a doctor or a lawyer. Have you?
He's worked jobs that made him feel important and independent.
He has felt like he was contributing to something good, and that made him feel important.
Isn't that how we all want to feel?
He felt valued.
He is valued.
He's travelled to Alaska and Florida, and several places in between.
He has been a part of my life since I was born.
He can remember things that happened fifty years ago.
Last week? That's a little fuzzy.
When I was growing up, he was a part of my daily life.
He would come to the grocery store with us.
He would walk to our house nearly every day.
He would just want to chat.
And, most of the time, he sort of irritated me.
As I got older, I became much more aware of Clayton being different.
He was loud, and he chewed with his mouth open.
He wanted to talk to all of my friends, and I didn't want him to.
He sometimes acted like a child, and I was often embarrassed when he came places with us.
He would come to the movies with us and laugh too loud.
He would come to programs at school and act different than everyone else.
He needs daily attention and care.
He can't do things like cut his own toenails or be trusted to have proper hygiene all the time.
He can't do his own laundry or cook a meal for himself.
He can't drive or take himself to the doctor.
He can't balance a checkbook or pay his own bills.
Someone has had to care for him for his entire life.
But our family did - nobody put him in a home or in an institution.
Clayton is part of the reason we have chosen to adopt Katie.
I have always, since the day I was born, had someone in my family with special needs.
Someone who was different.
Someone who was too loud and acted different than everyone else.
Someone who laughed too loud at the movies and who needed help every day.
What would Clayton be like if he was born today?
What would his life be like if he had occupational therapy and speech therapy?
What would his life be like if he had special education services and graduated from high school?
What kind of opportunities would Clayton have if he were born in my generation or the generation of my children, instead of in the 1930s?
I would love to have had the opportunity to talk to my great-grandmother about what it was like to parent a special needs child 70 or 80 years ago.
I suspect it was not easy.
Just as it is not now, but she had many more obstacles.
While I once considered Clayton an embarrassment, I know we are lucky to have him in our family.
He has taught us all lessons about life, society, and family without trying.
I hope we pay attention.