Typical Question


“Is he high functioning?”

This is the question I get often about Alvaro’s abilities or delays. When I hear it, I inwardly cringe. It’s not that I don’t know what people mean when they ask it. I know people genuinely want to know how he’s doing.
I don’t want to speak on behalf of all Moms with kids with different needs and abilities. I just wanted to share about my thoughts and feeling when I am asked this.

Alvaro was diagnosed with Down syndrome when he was 4 hours old. Since the day of his birth, he has lived a life of constant evaluation. These evaluations are necessary. They exist to target key areas that he is having trouble with, so that he can get extra help to reach his full potential. In some cases, so he can reach the full potential of what others describe as “normal.”

But despite the need that evaluations have in our lives, I sometimes grow weary of them.  I am to be watching how he eats, how he sleeps, how he moves, how he picks up toys, how he plays with toys, how he moves his mouth, how he drinks, the sounds he makes. Nothing goes without scrutiny. In fact, yesterday I had what I deemed to be a completely unnecessary appointment. I sat in a 15 minute meeting because Alvaro was considered “high risk” because he has Down syndrome. The main concern what whether or not he was using a sippy cup. Also whether or not he had any changes in weight gain or eating habits in the past 2 months. These concerns ONLY existed because he was considered “high risk”. Frankly, it was superfluous. This example bring me to my point: we have seen our fair share of evaluations and then some.

So when I meet someone who becomes acquainted with us and they ask me if he’s high functioning, I shed a deep inward sigh. I wonder to myself “Can’t my baby just be a baby? Can’t I share that he has an extra chromosome without his ability to use a spoon being called into question? Must he be categorized by ability upon first meeting him? Does it even matter?  What does high functioning even mean? Are we discussing his cognitive ability? Are we discussing his gross motor skills? His fine motor skills? His ability to say the word ball?”

While you may believe I am completely overreacting, remember- he has been evaluated and then some since this day he was born.  I am on evaluation overdrive. So while this question seems harmless to the person asking, it comes with a long list of answers for me. One I get weary of discussing on a regular basis. Because frankly, it doesn’t really matter whether or not he’s "high functioning." So I usually just paste on a smile and say “yeah, I guess so.”

All I know is my son is awesome. He’s fun. He’s determined, bright, and feisty. He’s quickly becoming one of the best problem solvers I know. If he can’t do something in a typical way, he finds a way that works for him. He’s amazing.  Whether he can hold a sippy cup or not.

 

  

Comments

  1. Tigger (aka Karyn)July 9, 2014 at 2:46 AM

    I have never calculated how many hours we have spent in evaluation but at some point I pretty much called a stop to it unless it is absolutely, critically necessary. My girl has DS and she is 8. She is beautiful, special, clever, naughty, determined, inventive, active and a complete delight. I meet with her educational team twice a year to determine the goals for her education. Nowadays that is pretty much the only "evaluation" that she has...although we are trying to get funding for speech therapy so I see some more evaluation in the near future. I hear you. Mostly she is just my kid, my other kids' sister, her best friend's best friend and a beautiful human being.

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