Wednesday, April 6, 2016

Would he have the same quirks if he didn't have special needs?



Max is planning to wear his beloved firefighter hat to his bar mitzvah. In fact, he will be wearing it when he makes his entrance into the party room.

Me: "Max, look, I got some new firefighter hats to give out. Would you like a new one for your bar mitzvah?"

Max: "NO!"

Me: "OK, well, the 'Fireman Max' label on yours is kind of old and yucky. Would you like me to put on a new label?"

Max [ponders this for a few secs and then]: "No thank you!"

Although Max has been getting more adventurous in recent years—game to visit new places, try new restaurants and do new activities—he is very much a creature habit. The familiar is what's most comfortable to him. That includes belongings; he does not part easily with anything, including stuff he's used to seeing around the house. Over the years, when we've gotten everything from a new stove to a new picture for our bathroom, he's protested. Max also tends to like things just so; if a cabinet door is open, he'll close it. He leaves his school backpack in the same spot every day. He turns off his iPad after every single time he uses it.

I sometimes wonder if Max would be this way if he didn't have special needs, same as I wonder whether he would have the obsessions he's had. Then again, my father didn't have intellectual disabilities and he was the most habit-happy person I have ever known. He lived in the same apartment for decades on end, where he died. He drove the same car, a Volvo, for 23 years. He ate the same breakfast every day. He insisted that my sister and I always replace the cap on the toothpaste.

My dad was "eccentric." I kind of like that word to describe Max, come to think of it, far better than "special needs." Someone once defined Max as a "character" and I like that, too.

One thing Max has taught me, among many, is the wonders of neurodiversity. People's neurological differences deserve recognition and respect, just like other human variations. Some days, I also ponder whether Max would have the sense of humor he does if he hadn't had the stroke at birth. Or whether he'd be as observant as he is. Or have the same amazing sense of direction.

Of course, I'll never know what other kind of Max might have existed, because this is the boy that I got, and this is the boy I adore.

Sometimes, he surprises me. When I asked him again yesterday whether he'd like a new "Fireman Max" label, he said "Yes." And so, he'll be making his entrance to his party in his slightly refurbished old hat, and he will light up that room with his smile.

I'm pretty sure that, no matter what, he would have always had that smile.


10 comments:

  1. Wonder of wonders, miracle of miracles!!

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    Replies
    1. God took a family by the hand?

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  2. I think about this often. My dad has a habit of ascribing any of my personality traits he deems "abnormal" to my disabilities, instead of acknowledging that everyone has their own little bit of mishigas. Thus, in his opinion, my being nocturnal is a symptom of mental illness, rather than a quirk I can either embrace or work around, but which has no functional relationship to my being, for example, bi-polar.

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  3. I'm one of those eccentric people. One of my trademarks is wearing rainbow knee socks.

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    1. Good morning, Anna!!
      Did you know that I like--no love--eccentric people/personalities?! I do mean that!! Truth be told, I somehow always have.... But then I became a Robert Downey Jr. fanatic.... And he immediately solidified my love of eccentric people/personalities!! I like unique individuals.... I love crazy celebrity guys.... {They are always "old"!! I know, I know.... I am weird, I'm gross.... I have heard it all!! I do not care!!} ;-D
      I love you, Friend!! ;)
      "Stay hard, stay hungry, stay alive", Raelyn

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  4. Ellen....
    You know.... Sometimes I wonder {and I would not change him for the world, of course!!} if I'd be as close to my brother {who has Down syndrome} if it were not for his extra chromosome!! Because.... We were both born with Life-threatening birth defects. Because.... We both have special needs. And that is such a good, positive thing.... Our friendship!! ;)
    "Stay hard, stay hungry, stay alive", Raelyn

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    1. PS. We also both share a lot of interests in common!! I forgot to mention that.... ;-D

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  5. Some of my quirks include my trademark to make everything into a reference of something, well not everything but most things. As well as my obsessions with Lotr and The Elder Scrolls series. Like max I also like things "just so"

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  7. Funny for me to read this today, the day of my son's bar mitzvah. In the lead up, whenever I notice my anxiety level rising, I've been talking a lot about "Embracing the Quirk!" Not just of Judah but of our patchwork 100-year-old house, our shul's intricacies and, most importantly, ourselves. It has really been a useful tool for grounding and remembering what's *really* important.

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Thanks for sharing!



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