Friday, January 15, 2010

In Which Connor Is Not Special And I'm Fine With It

I was filling out a questionnaire today; Connor has been selected for an award given out by the military hospital every year, and so we were to write a bit about him and send in some pictures to be used in the ceremony. Everything was going along swimmingly until I got to this question:

"Knowing that you are Mom and Dad, we would like to know from your perspective what makes your child special to you and your family."

And it was there that things screeched to a halt. I couldn't figure out how to answer this question, and I was surprised by my strong negative reaction to it. It's certainly a totally innocent query-- we were probably just supposed to list some of Connor's positive traits and move on. But it was that word "special" that was sticking in my craw.

While I say that Connor has special needs, as that seems to be the most PC term, and I love him deeply and fiercely, do I think of him as special? I might get a little flack for this one, but oh well.

No. No I don't.

He's not a saint or an angel or some sort of pillar of society. He's an ordinary little boy who happens to have a lot of challenges to deal with on a daily basis. While I know he's not ever going to be "ordinary" in the conventional sense-- he'll always be set apart by his physical and cognitive disabilities-- I really, really wish that wasn't the case. I wish that he could be viewed by the world outside our little family as simply a person, no better or worse than any other, and not as a case study or someone to be pitied or babied or scorned or idolized, depending on who's looking at him.

This is probably such a sticking point for me because we run into a whole lot of folks who tell Jeremy and me that we are special people for having Connor. And we're not. We're totally ordinary, normal parents who are muddling through raising a child and figuring it out as we go along, just like everyone else. I don't like being thought of as some sort of extraordinary person because it implies that only extraordinary people can raise children with disabilities. And that's not true; I firmly believe that anyone who would be a good parent to any child can be a good parent to a child with disabilities. To my mind, being special means being set apart. It implies an us and a them. And we don't want that, not for ourselves or for Connor.

It took me a long time to compose an answer-- I didn't want to turn Connor's award into my own oversensitive personal rant, and so it took me a while to figure out what I wanted to say. Tell me what you think about it. Here's what I ended up with:

"What a difficult question to answer! Certainly Connor is special from a medical perspective; he’s the only known case in the world with his specific genetic condition. But here’s the deal—despite the fact that his medical conditions permeate almost every aspect of our lives, we think of them as relatively unimportant. Connor has a variety of conditions that are part of him, just as he has blond hair and green eyes. They don’t define who he is.

"We could tell you about his bubbly, sweet personality, his great passion for music, and his easy acceptance of the hand that life has dealt him. We could mention his unmitigated joy in making new discoveries, his silly sense of humor, and the stubborn streak a mile wide he inherited from both sides of the family. We could talk to you about his bravery in the face of numerous emergency room visits, hospital stays, and painful medical procedures, his gentle touch with animals, and the astonishing beauty of his smile.

"But ultimately I think what makes him special to us is what makes any child special to a parent. He is our son, an ordinary person placed in extraordinary circumstances, who, like all of us, is doing his best to make the most out of what he’s been blessed with. He is made special by how very ordinary he is despite all of the challenges he is facing. We couldn’t possibly ask for more."



*Tasha* said...

Awwwww! Dang, that should be published & shown to as many people as possible. That's beautiful & definitely very well-written. :D Right now, my dog is going ballistic, so sadly, I have to end this comment but just know I think it's perfect :D Especially the ending - how simple it is; him being special simply in that he's your son & does what he does everyday without a second thought. Simply marvelous.

Johnna said...

Said it before...a long, long time time ago.. and will say it again. You are amazing...simply because you continue to insist you are not. Connor is a lucky little man...he couldn't have a better example of being exceptional.....exceptionally caring, exceptionally giving, exceptionally funny, and exceptionally wise. And I agree...your response needs to be published....

Becca said...

Connor may not be special... but I really rather think that you *are*. For your talent as a writer if nothing else. ~sniffle~

Fact is, while nearly everybody as you say are perfectly capable of being good parents to any child, many of them seem to lose their way and lose sight of the soverignty of their disabled child as a person in their own right, spending more and more time and effort on trying to fix them, mend the unmendable and suppress visible difference... where they (and their child) would be so much better off spending some/more/sometimes all of that time and energy bringing up a well adjusted, confident kid who has the tools to function as the adult they're going to become.

Incidentally, a disability rights campaigner over here in the UK, can't quite remember who - maybe comedian Lawrence Clark, says ‘special really just means a little bit shite’ - in reference to Special Needs, Special Schools, Special Services and the like that mark the legacy of segregation that disabled people and their allies are fighting.

Kristin said...

Thank you!

You have written what I struggle to come up with in my head.

I'm not special. L may have special needs and I don't really like that term, I think additional needs is more appropriate.

I was simply thrown in a situation that I would never have signed up for on my own and have learned along the way. Anyone, who truly loves a child, would be doing exactly what I'm doing now, some would probably be doing it better.

I think that parents of SN are described as special because others just look at all the extra we have to do and are grateful they don't have to. I know that I'm grateful I'm not hauling 3 kids to therapies. I just have one that needs therapy.

I read your blog daily. My L has a duplication at 22q. She's much less severely effected and it's much more common but has gross motor delays, extreme fine motor delays, SPD, Autism, and severe ADHD

Ann said...

I'm crying again ....

Lin said...

Rockin' answer, Jess. Leave it to you! :)

Anonymous said...

Well said. Thank you for sharing your life and family. smgoodie

littleterr said...

Miss Jess, whether or not Connor had special needs, you and Jeremy would be especially good parents. All parents basically nurture from the seat of their pants, but some have better instincts than others. There is a reason families used to book your babysitting services a month in advance and bring you gifts from their trips. Deny it if you will, but you have always been special to your Dad and me and a multitude of others. Hugs and love.

Galen said...

Well said!

Julia said...

And what a difficult post to respond to! First of all, that was a brilliantly and beautifully written answer (not surprisingly). Second of all, and I don't mean to rub salt in the wound, but you *are* a special family. Why else would we all be following your story so closely and enthusiastically? There's something about Connor that is so engaging and endearing -- and it's neither because of nor in spite of his additional needs. It's exemplified in the ways in which he and your whole family both deal with and transcend your daily challenges, but in fact even that isn't the special something itself. It's something intrinsic to Connor and your family, something that would be there even under different circumstances. Your particular circumstances have given you opportunities for developing and amplifying that spirit, but it was in you to begin with.

Amanda said...


Renate said...

PERFECT, just absolutely perfect, Jess. I have the same kind of resentment when it comes to my "special needs" granddaughter, especially when being told that god gave her to my son and his wife because they were so strong and able to take care of her. To that I say "BS"; they are simply dealing with the hand fate dealt them as best as they can. We all love our little one dearly, neither because or in spite of her disability, but just because she is who she is. Her sweet personality and her awesome hugs among other things.

Sarah said...

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Chloe's Mommy said...

So very eloquently put. I applaud you for following your gut on this one...too often these things are glazed over, and it's time we all start answering these questions with the honesty that you did.

Wherever HE Leads We'll Go said...

Very well said. You said it perfectly. You have such a way with words - it is truly a gift!

Elizabeth said...

That is so beautiful. And so are you (but not special, just beautiful) :)

RNW said...

What a great post.

Debra said...

So, you don't know me. I started reading your blog when Jeremy was hurt, and a friend from A&M asked for prayers (and pray we did!), BUT that last paragraph was amazing. I might even steal it and repost it (giving you credit, of course).

Thanks for sharing little glimpses of you world with all of us.

Katy said...

Made me cry. . . .and also, I completely agree with you on this one. The idea of "special" does set our children apart when really, they are so much like other children.

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