Maybe I just hate labels

I do hate labels. I understand them, but I don't like them. Most labels conjure up negative images in one's mind. Some labels have spectrums. Spectrums force people to ask questions. It forces people to look beyond the labels.

Down syndrome does not have a spectrum. Down syndrome is what it is. It is 3 copies of the 21st chromosome. You either have Down syndrome or you don't. There are variations; mosaic down syndrome (where some cells are affected, but others are not), translocation down syndrome (where part of the chromosome is attached to another chromosome, but there are still 3 copies) and regular, plain ole down syndrome (all cells contain 3 copies of the 21st chromosome and they're where they're supposed to be on the karotype).

This is not to say that some people aren't affected more or less by their extra chromosome. It's really luck of the draw. But there isn't a little bit "downsy". There isn't a spectrum for learning or understanding (yet). There's nothing to force the average person engaged in an average conversation to look passed Down syndrome. To look passed Sean's slanted eyes. To look passed his short fingers and lack of true conversation.

My experience has been that when the average person, who has no experience with Down syndrome, hears "Down syndrome" negative connotations will usually enter their mind. When I have brought it up, some people look surprised that Sean is so "normal". Some give a look of pity.

These negative images certainly entered my mind when I first learned Sean had Down syndrome. It's the reason I thought I'd be raising a 50 year old with the mindset of a 5 year old well into my later years.

I've mentioned in the past that I had an abnormal psych class in which the professor forced the class to look beyond psychiatric labels to find the true meaning of the illness. Why did he hate labels so much!? I mean geez... they wrap everything up into a nice little bow right? Well... yes & no. They wrap EVERYTHING up into a nice little bow and usually the things that shine through are the negatives.

What does this have to do with the price of apples in China?

My friend and fellow blogging mom to a wonderful little boy with Down syndrome, Maureen (check out her blog here), posed a question on a social network. She asked the local Down syndrome community whether it had ever played the "Down syndrome card".

I put it out there that people playing the "Down syndrome card" bothers me. I don't agree with it, but I don't judge. If it works for other families that's fine.

What I don't like about it is that I feel like it takes away from forcing people to see passed the Down syndrome. "Oh... little Johnny is acting up. Again." "Oh don't worry about it honey, he's got Down syndrome." It allows people to see Down syndrome as a negative, in my opinion. In much the same way most feel the word "retard" should be eradicated because of it's negative connotations. It allows people to be dismissive. It's insulting.

I'm guilty of it as well. When we lived in NYC there was a family living on our block whose son has autism. After the major 27" blizzard a couple of years ago, he & his older sister went out to the corner of our street and started shoveling snow. At the time Rob & I thought they were nuts. Who in the right mind goes out to shovel snow in the street in the freezing cold when they don't have to? We thought his older sister was out there placating him and making sure he didn't get hurt. I dismissed what may have been his motives because he has autism.

It never occurred to me that maybe he was just helping out his neighbors and the sanitation department by doing his part. I have obviously re-examined that and many other situations because I have been forced to.

I fight each & every single day for Sean to be seen as a regular ordinary kid with upwardly slanted eyes.  I struggle with the notion that Sean's bad behavior in a restaurant could be pitied or dismissed simply because he has Down syndrome. Especially when his older typical sister is throwing the same fit with a more demure style.

There are other things that some children with Down syndrome are affected by. Some children with Down syndrome also have Autism. Some have sensory issues with no Autism diagnosis, hypotonia, etc. So I get that some people (child or otherwise) need assistance because of those things. My issue is the label. Down syndrome cannot & should not be used as an all encompassing label.

In my opinion, using the all encompassing label of Down syndrome allows people to dismiss Sean for being Sean. It allows people to assume that just because your child has sensory issues, all children with Down syndrome have it. And therefore Sean must have sensory issues as well.  It allows people to assume that because your child has low muscle tone, all people with Down syndrome, including Sean, too. You get the idea.

I don't like the constant uphill battle I seem to be fighting to get people to understand that just like everything else, there are differences between people with Down syndrome. Many differences. To force people to see that just like typical people are not all alike or one nationality of people are not all alike, people with Down syndrome are not all alike.

My other issue with playing the "Down syndrome card" is that it's generally used in negative situations. Why can't a child with Down syndrome score a 100% on a spelling test and their parents say, "yeah. it's because he has Down syndrome?" Why can't a child be "so well behaved" and the parents say "Yeah it's because he has Down syndrome?"

Why can't a child be coloring on the booth at Denny's (shooting my son a total side eye) and people just be happy with "yeah he's 2. What are ya gonna do"? I swear to you no less than 3 times this year has someone dismissed Sean by saying "oh it's ok. I have a special needs (insert family member here). I understand." Um.... no he's 2. He colors on walls and booths and basically does the complete opposite of whatever I tell him to do. Hey come to think of it my typically developing 4 year old does the exact same thing. Just with more gusto and passion. OY!

I just want my son to be seen as a 2 year old. Not a 2 year old with Down syndrome.