Discrimination is ugly. Sometimes discrimination is obvious, purposeful and evil and sometimes discrimination is accidental. My daughter has been the victim of both.
The discrimination that hurts my heart the most is what I am going to call disability on disability discrimination. I bet you’re wondering what that is. In the world of disability only the kids that are at the very top are celebrated. If you look at the National Down syndrome sites, their sites are full of stories that shine lights on kids and adults that are on tv, go to college, exceed in dance classes, write their own books, own their own businesses but kids that for the first time ever was able to walk through the store without having a fit? No, not the kind of spectacular story they are interested in.
Then there’s the “one up club”, this is the most insane “club” you will ever meet. It consists of parents who are constantly looking to one up you, constantly pushing their kid’s achievements down your throat. Oh little sally is in the 4th grade, she’s fully included and doing 5th grade work! Pumpkin is 4 years old and already knows how to balance the family checkbook. I used to drive myself totally crazy wondering what the hell I was doing wrong that my child couldn’t be among typically developing peers in her age group and do the same work they are doing, talk the way they are talking, in short how had these children with developmental delays morphed into typically developing children and mine couldn’t? I looked for pills, potions and scoured Google, I found no magic pill. The truth is that their parents were lying, or rather stretching the truth. Not sure if they meant to or not but by trying to boost their own child, they discriminated against mine. They were saying “our kids may both have the same extra chromosome but clearly, my kid is better than yours”. Was this on purpose? I would like to think NO but I there’s a part of me that says it is.
Let me tell you, fully included does not mean that the kid is doing the same grade work as their peers, fully included often doesn’t even mean that the kids are in the same class all day. The words “fully included” lead you to conjure up images that can make you wonder what you are doing wrong. These kids often go to a resource room for 1:1 help OR they have 1:1 aides in the class OR they are doing 2nd grade work in 8th grade. Don’t allow the words “fully included” scare you into thinking that every other kid is on par with grade level and yours isn’t.
So, then we turn to the Autism world, surely this is more the “home” we’ve been looking for, but, most of the activities are for kids with mild delays or Asperger’s syndrome. UGH same deal , different diagnosis.
My child is nonverbal, this leads to her being harshly judged by everyone, this has lead to behaviors that have alienated us because people look at my kid and think “oh my, she’s not fit for our company” I have actually had friends bless their life after looking at how she has behaved and her behavior is directly related to her being nonverbal because she is smart, but she gets frustrated by a lack of communication. Try it someday, go through the whole day without talking OH and her fine motor skills are awful so she can’t write SO no writing to get your point across, TRY IT, I promise you, you will have a whole new respect for people that have to communicate without the spoken or written word.
It has taken me a long time to understand that I need to get all those people out of my head; they are the ones that can’t see the beauty in my daughter’s achievements. What comes so easily for most children can be years in the making for my girl but, then, you turn around and with the help of technology there she is putting a sentence together “I want to watch tv, I want to watch Barney” and in your entire life you have never been so happy, so grateful so completely in awe. You learn quite quickly not to take the world for granted.