What does special needs mean, anyway?

I’ve thought about the term “special needs” a lot since the girls were born. As a social worker, I’ve worked with kids and adults with all kinds of levels of functioning and with every type of concern or difficulty you could imagine.

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Ella in her GoTo seat at Sunday dinner for the first time, May 24, 2015 (day 506)

I’ve never liked labels. I don’t think social workers should identify anyone or diagnose. I hate the DSM (a diagnosis tool). In fact, I’ve always felt that when every other person or professional is labeling someone and calling them by their diagnosis or presenting concerns, the social workers should be the anti-diagnosis, reminding others the great things about our clients.

I feel the same way about special needs, and especially my Ella. I’ve written about my reluctance for her to be diagnosed before. Our NICU described it as the elephant in the room. But you know what? So what? Ella is beyond a diagnosis. And her diagnosis of cerebral palsy? Literally means nothing. Like so much, there’s a spectrum and that diagnosis answered nothing for us. When I go somewhere and you see Ella sitting on my lap, and not in a high chair, me telling you she has CP wouldn’t tell you anything except that she’s not using a high chair.

When you think about it, we all have special needs. None of us are exactly the same, we all live on a spectrum. Saying someone has special needs doesn’t describe their relationships,  their personalities, their undeniable strength that a “typical” person doesn’t even know if they have because they’ve never had to find out.

It doesn’t describe the heartache and worry that brought about the diagnosis, the loss of relationships, the number of appointments and therapists, the added stress, the feelings of isolation. It also doesn’t explain that once your baby is special needs, so is your family. One for all and all for one. It changes everything, that saying, special needs. It changes everything, and yet, changes nothing. Not really, not deep down. Just on the outside, like raindrops hitting a window while you look out from within, all cozy and warm, and loved.

To be honest, I still have no idea what special needs means, but I do know that we should think twice about the labels, and think instead about the person.

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Playing hide and seek!

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