Wednesday, April 18, 2012

Let me explain...

I try to stay away from controversy here because I don't want this to be a platform for it; however, I do also believe that it is my post so I can voice an opinion.  What I want to talk about is not a huge deal, but does go against what a lot of people on my forum believe. 

I am not an easily offended person.  Many of you know that already and I've stated it numerous times.  I think I've found myself even less offended since Tera has been born because I've found that a lot of people just want to say the right thing and get so nervous they're going to say the wrong thing that a good intention comes out a little "off".  I guess my perspective is this: I already have a lot of my time taken up by things I'd rather not do so I don't want to waste any more time worrying about how somebody phrased something to me.

Let me put it this way: if you want to piss me off and want to say something to hurt me, that's your choice, I probably just won't talk to you anymore or I'll try unsuccessfully to pretend I'm okay with you.  But if you just want to ask a question or you truly don't understand something, I'm more than willing to answer or clarify so that should you come across someone who does care, they won't be offended.  Obviously what I'm referring to has mostly to do with DS, but it applies to many other things as well. 

I'm a teacher and I've always told my students that my job is to educate them in many arenas, not just math.  I feel the same way about my personal life. I feel like part of my role as Tera's mom, and that of a parent of a kid with DS, is to help educate people on the nuances of this crazy little extra chromosome. 

Where all this rambling is going is to a topic that has actually come up in conversation with many people lately (I'm not sure why all at once, but whatever) and that is the "severity" of DS. 

Just to clarify: DS is not a spectrum disorder like autism.  You can't kind of have DS; you either have it or you don't.  There is a type of DS called mosaicism which does tend to have fewer of the characteristics typical of DS, but it is still DS nonetheless.  Many people post in my forum about coming across individuals that say things like, "he must just have a mild case", or "are they high functioning?" The first statement just can't happen.  DS affects all the cells in a person's body, not just some of them so there are no mild, moderate, or severe cases of DS.  However, the term "high functioning" can actually somewhat be applied. 

My husband, who is incredibly blunt and really doesn't get offended, basically put it as, there are plenty of typical individuals who function at a higher level than others and there is no major faux pas happening there.  We refer to students as high achieving, so why not high functioning?

If a person asks whether my child is high functioning, I assume they mean to ask how is she developing in comparison to a typical kid.  There is going to be variance in the DS community of individuals just like there is in the typical community, it's just a part of life.  Tera did some things like roll earlier than some other kids we know with DS, but she sat a little later and we're still waiting for sounds other than D's and B's to come out.  She's incredibly active and engaged, but she's not crawling yet.  She's very strong, but she doesn't seem to recognize familiar words yet. 

So if you want to know whether Tera really has DS or just kind of has DS, I'll probably give you the cliff notes version of how the cells split incorrectly and that every one of the million cells in her body has this little issue which is why its effects are so widespread.  But if you want to know if she's high functioning, I'll probably tell you yes, of course, my child is incredible and will probably be the first person with DS to be accepted to Harvard on a full scholarship because she's just that amazing.  But seriously, yes I think she is.  She's only mildly delayed in physical and developmental areas and a little more in speech.  But she's only one.  We have LOTS of time to work with her to make sure her application and essay are complete and off the charts impressive.

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