Saturday, December 21, 2013

Of labeling a child -- because words matter

It all started about a month ago.

"Hey, Steve," I said look at him across from my way-too-smart phone, "Did you know you were a special needs child?"

I had stumbled upon a support group for parents of babies with EA/TEFs. That is, with the rare birth defect that almost took Steve from us over three decades ago -- before he was yet a day old. The aftermath of that surgery, that defect, continues to be his self-described Achilles heel to this day.

Reading the stories on this support group was much like reading the blogs and tweets and chats of parents of premature babies. Lots of worry, rejoicing at successes, uncertainty about the future, doctors appointments and unanswered questions. And all these parents were talking about their worries for their special needs child.

That label. I'd never applied it to Steve. I don't think Steve had ever applied it to himself.

My husband describes his childhood a lot of ways. He talks about how one of the best things that happened to him was his mom holding him back and not having him start kindergarten until he was six -- and then home schooling him for that. "I was too shy," he would say. He then goes on and talks about how he was friends with everyone in early grade school, and then how he lost the popular status in fourth or fifth grade when he refused to exclude the less desirable classmates in school yard games.

He describes his middle school years by how he sort of dated this one girl that I also knew and how he loved band.  He describes high school by his debate days and a memory of seeing this attractive girl dressed as a hippy playing Peaseblossom in the high school rendition (1970s style) of A Midsummer Night's Dream. (Yeah, that was me.)

He has never, ever, described himself as a special needs kid.

He has talked about how sickly he was and how he learned to love reading because of his many many days home from school. He talked about how amazing it was when his mom finally found a doctor that understood his lung issues. He talks about how to this day when he starts to get sick he HAS TO take it easy because otherwise he won't recover for weeks or months.

But special needs has never crossed his lips.

Until this day, when I stared at my phone and stared back at Steve and announced that he was special needs.

"I guess I was," he said.


This conversation opened up new possibilities for me. A world where we don't define ourselves by our disabilities.

I've been struggling with how long to consider Jonathan a "preemie."

"As soon as he outgrows his preemie issues," was my initial thought. "As soon as I don't have to explain anymore."

But then came the rub. He will likely never outgrow his special needs. He will always have glasses.  He may see five specialists a year and have to take inhaled steroids to stay well. He may spend a long time struggling with simple tasks like swallowing food or learning to speak.

But so did his dad.

He may always be small. He may have issues with gross motor. He may never be super spatially aware. All these thing that would have been different if he'd not been born so early.

But, to an extent, same with his dad. Steve has had to bend many things in his life because of one small thing that had him have surgery shortly after birth. We cannot have pets. We cannot have wood burning fire places or heavily carpeted homes. We have to take illnesses seriously, because they migrate to his lungs.

So yes, my spouse has special needs. The label applies to him. But it's something he has, not something he is. All the doctors, all the specialists - they were and are a part of his life, but they did not and do not define his life.

My girls love the doctor's office because when they are done, they get a sticker.  One child chooses to put that sticker on the front and center of her sweatshirt immediately. Usually it doesn't come off, gets thrown unnoticed in the wash, and there's a sticky spot on the sweatshirt with little paper bits stuck to it for months.

My other daughter keeps the stickers. She doesn't put them on her shirt, she holds them and looks at them and puts them away in her backpack and then finds them again months later.

Both my husband and my son got stickers at birth. The stickers say "special needs."  If I put that sticker on them, I find myself saying things like "Well, you know, he is a special needs child."  When we put that sticker elsewhere, it ceases to be the first thing we see. When we do find the sticker in a medical chart or a realization that the camping trip won't work if we can't get a smoke-free cabin, we say something like "well, he can't be around smoke, because he has lung issues." Or merely, "he has special needs, so tent camping isn't a good idea."

Did you notice the difference?  When the label is put ON, he "IS" special needs. When the sticker merely exists, the sticky residue doesn't define the person, we don't always see it. He merely "HAS" special needs.

I have a friend from high school. She is a person with albinism. She insisted in high school that she was NOT an albino. "Well, yeah, you are," some people would say, "because those two sentences mean the same thing."

I learned from her that they don't. One ("I'm albino") puts the label as the forefront of your identity, the other ("I have albinism") describes a medical condition that may impact a few aspects of your life but doesn't change the core of who you are.


Steve isn't his Achilles's heel. He's just STEVE. Funny, intelligent, amazing, empathetic (even though he says he has a cold heart on account of being an economist).  Not special needs. Just Steve.

We're making a choice for our son. He's going to have to see specialists, yes. He's going to have a slightly more abnormal life than most little kids, yes. (Heck, he already has.) In that sense, yes, he's going to have special needs. But he's not going to be special needs. Because we can choose where to put the label. And as Steve has taught me, where the parent puts the label shows the kid who they are.

It IS so important that he have these medical labels, they help us know how to care for him. They help make it possible for us to give him as full of a life as possible -- even if it's not "what it could have been" -- even if he never outgrows issues from his prematurity.

I cannot discard the "special needs" label. But I don't have to place it at the forefront of his identity, either.  I can hold it in JAM's charts that I carry with me. In this way, I do not ignore his needs or pretend everything's "fine," I have him treated and followed so he can develop as best as possible, but I also don't define him by these needs.  JAM's dad has shown me - I can care for JAM and yet never leave him with the sticky residue of "23 weeker."

Because beyond all the medical labels we've collected for him, picked up at doctor's offices and specialists appointments, underneath all of that Jonathan is JUST Jonathan.


  1. Well done, my friend! This is amazing perspective - thank you. I will share, for sure...

  2. This is one of your best written entries! I LOVE it!

  3. So good. Thanks for sharing this link in the comments over at Life with Jack. I LOVE hearing from others who get it!


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