Wednesday, April 23, 2014


This was not a topic on my mind as I awoke this morning, but it seems to be a recurring theme today.

This morning, Jackson was physically fine but had an emotionally hard time going to school.  He was nervous and started crying as he and Darren went into the building.  Though he had calmed down and seemed better before Darren left, I worried about Jackson today as he hobbled around on his walker and fielded questions from his friends.  I was relieved when I picked him up this afternoon, as he was a-okay.  I asked him what happened this morning and he said he was nervous about the walker and thought that his friends might laugh at him.  (What really happened:  No one laughed.  Classmates were just curious and seemed content with the explanation that his leg muscles needed time to heal.)

Also today, I read a Facebook post that made me think about differences, perceived and real, and the norms associated with recognizing those differences.  We are taught to not see differences.  Everyone is the same.  But that really isn't the case, and feels totally disingenuous now that I am the mother of Matthew. 

We are all different, some more than others.  It isn't a value judgement.  Difference doesn't mean less, it just means different.  And to teach that we shouldn't recognize difference actually makes it harder for some that are different.  When we try to ignore difference, we often ignore the person that is different as a byproduct.  I have experienced many times someone noticing Matthew's differences and then quickly adverting their eyes. I assumed that they are trying to follow the norm-- ignore the difference-- but that also means they avoided Matthew. 

I am guilty of it.  When Matthew was in a helmet (3 years ago!), we were going to an orthotics firm that fitted prostheses.  A man came in to the store in a wheelchair with his prosthetic leg across his lap.  I remember being nervous that Alyssa (age 5) or Jackson (age 3) might say something 'inappropriate'.  I hadn't prepared them.  I adverted my eyes as not to stare at the man with the leg across his lap, but Jackson said "that man needs to get his leg fixed!".  I was a bit embarrassed at the time, but now believe there was nothing 'inappropriate' about what Jackson said, or that he acknowledged there was difference. He wasn't being unkind at all, he was acknowledging the person before him.  I avoided the person as to not acknowledge the difference, while he saw the person. 

I know many people don't know what to say, or what to ask, or how to acknowledge difference without feeling like they are breaking a norm, or passing judgement.  There is a fine line. But as the mother to Matthew-- one of the uniquest people I know of in the world-- my advice is don't look away.  You can acknowledge the difference. Ask questions.  Make observations.  See the person.

It is perfectly okay for someone to notice Matthew's hands and ask how he holds a pencil, or state that he only has 4 fingers and isn't that cool!  It is okay to notice (and say) he doesn't talk like a 4 year old, but he seems to get his point across.   It is perfectly alright to ask, does Matthew have a diagnosis? It means you saw Matthew.  I am happy that you saw him and I am more than happy to talk about all of the unique, awesomeness that is Matthew. 

I vividly remember the day of Matthew's birth, telling family and friends that he was born without thumbs. (Oh, if only that was the biggest concern!) I remember crying to my dad, saying that 'kids will make fun of him'.  And my dad's most comforting words (paraphrased)-- "Kids may make fun of him, but it will be okay.  I was made fun when I was a kid because I wore glasses. Everyone is 'different' in some way."

Everyone is different. 
There is great irony that we want to fit in AND stand out.

I know that some may worry that acknowledging differences may lead to bullying. I fear that in time we may learn all too well about that, but my gut feeling is that there is a big distinction between acknowledging difference (without judgement) and being mean/ spiteful/or cruel about differences.

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