Tuesday, July 1, 2014

Nemo, labels and puppy dog shoes.

One of my favorite movies was on TV last weekend. The scene grabbed my attention just as Nemo convinced Marlin that he was in fact old enough for school. I froze in what I was doing, so gripped by what was about to happen in Pixar's Finding Nemo:

Marlin and Nemo swim to school. Marlin introduces Nemo to the teacher and explains that one of his fins is smaller than the other: "We call it his special fin," Marlin explains.

And bam, tears are coursing down my cheeks and I am transported back to a dozen firsts -- first day of preschool, kindergarten and every grade where we moved schools (2nd, 3rd, 4th....), first day of theater, first day at a new church, first day....

Pretty much everywhere anyone was meeting us for the first time:

"This is Benjamin and Mason. Their legs don't work as well as your's (speaking to classmates) so they use special things to help them get around. Mason uses crutches, but we don't call them that. We call them Power Sticks! And Benjamin uses this super cool power wheelchair! He can go so fast he can keep up with you when you run on the playground!"

Mommy teaching Benjamin, Mason and Claire's kindergarten class about Cerebral Palsy.

Oh, Pixar nailed it when they wrote the character of Marlin. Absolutely nailed it. I wrote the director and told him so 11 years ago. I was so grateful that this cute, funny, witty animated cartoon made me feel less alone and made me laugh at the same time!

As part of the "lesson" we let the kids try Benjamin's wheels -- this is Claire giving the chair a spin!

Another little friend taking her turn -- they were amazed at how hard it was to drive because Benjamin made it look easy!

They also tried Mason's POWER STICKS!

Benjamin was glad to be back in his "legs"!

But this weekend as I pondered the beauty of this little movie, I was struck by the weight of labels. Marlin was adamant that he turned the damaged fin into a positive -- Nemo's "special fin". When Mason was given the first pair of cuff crutches to try, I had only been walking the special needs mommy-road for three years. I had no idea what I was doing. I had triplets and that meant no time to delve into any psycho-help books that might have taught me how best to navigate the world of special needs and all the equipment it brought. I had only my instincts. And the day he was handed those crutches, my instinct said "Yuck. Crutch is a negative term -- or at least it has negative connotations. I won't use that!" The first thing out of my mouth was Power Stick...these little sticks would, after all, give Mason the power to ambulate, the power to move around his own space.

Now before you -- or I -- think too much of my emboldening terminology -- I should confess that I also came up with a term for their little bitty orthotics that they began wearing at 1. This time, two years before my brilliant Power Stick revelation -- I would simply call them "puppy dog shoes" because the Velcro had little puppy dogs on it. Lame, right? But somehow, putting on their red (for Mason) and blue (for Benjamin) puppy dog shoes every morning was more fun than putting on "braces" or "orthotics."

Long gloves, microphones, magnifying glasses -- some things never change! (But can you see the little blue "puppy dog shoe" poking out from Benjamin's jeans?)

Clearly, though, labels mean something to me. They speak volumes about our attitude toward the object, device, shoe. And sometimes, labels speak volumes about the person.

About the time that my boys were starting school, I realized that I didn't particularly care for any of the labels the world would use to describe them: handicapped, disabled, special. Yuck yuck yuck. I even read that handicap came from the word "cap in hand" as in begging for money. I was outraged and refused to use that word. But it is awkward to say special needs all the time...and I didn't love that. I also detest the word "disabled" (as if a word could be more negative).

But when I think about it -- really ponder what upsets me about these words -- I know the problem lies with me disliking talking about what my boys CAN'T do as much as it involves the labels. I prefer discussing their wit, their charm, their minds...so I find any term that labels them as less-than-absolutely-amazing deplorable. There.

I have a tendency to down play it as much as possible. When I call to make restaurant reservations the kids laugh and laugh at me because I say: "By the way, I have a little guy in a wheelchair..."  Little. Guy. Little guy is 17...and not so little. But honest to goodness, I struggle with how to let them know without drawing attention to Benjamin's disability. Blech.

So while traveling with hubby two weeks ago, I started to read Dr. Freeman Miller's book, Cerebral Palsy: A Complete Guide for Caregiving. In it, he breaks down the use of the terms handicap and impaired. Reading that chapter was eye-opening for me. Apparently because Mason (at 17) is able to function independently with the use of aides, like his power sticks, he is impaired by his Cerebral Palsy. Benjamin on the other hand, because he requires a power wheelchair and assistance with daily living skills, is considered handicapped by his Cerebral Palsy.

Hmm. Understanding the logic behind the use of the words helped me for some reason.

And yet, I must confess that I was still bothered by the handicapped term. So I decided to look deeper into the etymology of the word. Turns out that its roots aren't from begging after all -- rather the term originated as "hand in cap" as referred to a lottery game as early as 1653. It was not even used to describe a child with physical impairments until 1915.

Claire helping the boys do therapy!

Doing physical therapy at 3...

Knowing all of that probably would not have changed my attitude when the boys were little. I stand behind their need for positive terms to describe the aids that allow them to be independent and reach their goals. And I know that then, just like today, I prefer labels that describe them far more adeptly:


Putting on their puppy dog shoes may have helped my heart way more than it helped their's...and refusing to call them "handicapped" even though my reasons were erroneous, was still my right, and helped my hurting heart.

We are at a different age today. It is their job to determine the labels, the words, the verbiage they use to describe themselves and their Cerebral Palsy. My prayer is that they will move forward in life KNOWING how amazing they are in all that they CAN do first and foremost before they even allow themselves to consider how to explain the things their CP does not allow them to do.

Ticklish is another label they wear!!

Carol - The Blessings Counter