Monday, April 21, 2014

A Little Bit of Ds

Johnny has Down syndrome. Period. His chromosomal analysis proves that. With as much assurance as they can give, doctors have shown us that his 21st chromosome comes in triplicate in every cell of his body. He doesn't have a "mild case", he doesn't have a "little bit of Down syndrome", and there is no reason to suspect that "maybe the doctors got it wrong". He has Down syndrome. 

A friend from "the community" fielded an encounter of someone saying similar statements today. I have encountered it as well. It's one of the many questions that we parents of kids with Down syndrome have to answer somewhat regularly. I always try to answer in a gracious manner. 

There is no such thing as a "little bit of Down syndrome" or a "mild case". Someone could argue for mosaic Ds to be an example of this, but we can argue that on a different day. The fact is, either there is an extra chromosome or there isn't. How Down syndrome manifests itself is unique to each individual. I will tell you, from all of my research, kids and adults with Down syndrome are amazing people. There is so much of the body that can be effected, a lot is stacked up against them. So the impact of Down syndrome can be mild on an individual, someone could only show slight manifestations of Down syndrome, but they either have it or they don't. 

I think that one of the reasons these statements can be bothersome is that they often come from strangers or lesser known acquaintances. Random encounters with people will sometime lead to conversations about Down syndrome and there is sometimes shock to learn that Johnny (or other people's kids) has it. The statement is usually along the line of "What?!? Well he doesn't even look like he has it, it must be a slight case." It is always, always, always linked to appearance. 

(These photos were chosen because more physical markers are seen here)

Can you imagine the steam coming out of my ears?!? Because I can sometimes feel it. 

I don't want my son's abilities to be based on how he looks. I don't want others to judge his abilities based on how he looks either. I want them to see how hard he works and tell me it must be a slight case. Then I can explain that he has Down syndrome, but yes, he is one of the hardest workers we know. I want them to see him holding down a job one day and question how capable he can be inspite of all that is stacked up against him. I want them to see his face and comment on his smile and his big brown eyes without looking at all the ways to "see the Down syndrome". I want them to question a Down syndrome diagnosis because of how well he plays with his buddies, how kind and polite he is, and how easily he interacts with others and his environment. I don't want them to question his diagnosis because sometimes, from some angles, he looks "so normal"...whatever that means. 

And sometimes I am grateful for the physical indications that he has Ds. I hope that sometime in the future, when he is struggling, that people will be patient, kind, and helpful to him. But shouldn't we be that way to everyone who is sincerely trying at their task, but, for whatever reason, just isn't succeeding?

Regardless, he has Ds, 47 chromosomes in every single last cell of his body. Sometimes he looks like it, sometimes he doesn't. But his life and encounters with others will be a far better indication of who he is than any markers that can be checked off a list. 

I love that little boy, looks and all. 

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