Monday, July 21, 2008

Tired of the word DISABILITY - what else can we call it?

I was approached today at the pool, and heard once again, "I don't know how you do it."
This person was responding to Blondie slipping on the pavement and crying. Now when she gets tense and cries, her hand looks kind of funky because all of the muscle tense up, so I did a quick wrist check to make sure nothing was broken, and sent her back to get in line for the diving board.

me: "How I do what?"
"Have the strength to be calm every time she gets hurt?"
me: "Do you get upset every time your 6 yo falls?"
"Well no, but mine isn't disabled."
me: "Neither is Blondie really, her arms is weak and she limps, no biggie."

Then I got THE LOOK. The look that says either "Wow, you're so strong," or "You are in serious denial about your child."

I am obviously focused on kids like Blondie who have had this rare brain disease, but I am always looking for other kids who can light up the world and show that everyone has a lot to offer. I use the word "disabled" in conversations to set others at ease that YES, I know something is different about Blondie, but Big Al, Cheesie and T-Rex are different then others too - don't all kids have "special needs?" Everyone has strengths and weaknesses.

When Blondie became sick I was devasted about the loss of muscle use, and the obstacles I thought she might face. I CRIED HUGE TEARS right at the counter of the DMV the day I got a handicapped parking thingie for the car because she could either walk to the store, or walk through the store, but it was exhausting to do both (now I can't find that thingie - we never use it). At the time, I thought of all these things she wouldn't be able to do. (Now keep in mind this is an old list) I thought she wouldn't be able to do a handstand, or swing on the monkey bars, or drive a car, or swim well (HA), or have only a few friends, what about boyfriends and getting married? Who would tie her shoes (again HAHAHA- see below) and cut her meat, could she keep flip-flops on (not yet)? At some point I realized I can't do a handstand either, so I started to think about the things she COULD do, and I actually made a list that I keep in my purse.

Take a look at these amazing people (and all of the things I can't do) -

Wheelchair skating -
This young man scares the crud out of me (I bet his mom can't watch either), but he is INSPIRING!!!

One handed Rubik's Cube -
Is he considered disabled because he only uses one hand, or amazing because he COULD use two hands, but chooses not to?

One armed Drummer- Def Leppard
Hey Colin, can you teach Blondie to do that? Hmmmmm..... maybe not in the house.

One handed Piano playing
Great. Sign all 4 up for piano.

It took me awhile to say the "D" word, and now I can say "Special Needs" and not be offended, but I tend to look at things this way: Blondie was on a path in life, and then this crummy illness knocked her over. Now she is on a path that is slightly to the right of the original. It is still wide open, just ask those kids that got the scholarship for college that Jessie's family sponsored.

One of the kindest things that ever happened to us was a few months after Blondie had her surgery. Big Al played softball that fall, and the other families at the field saw us with a healthy 2 yo. When she returned to play in the spring, we now had a disabled 3 yo. They missed the whole drama. Most didn't ask us anything about it, or just heard about the seizures and surgery in vague terms through the grapevine and left it alone. They got used to me toting both a tiny toddler, and Blondie up the hill to the field. One day, a few weeks into the season, Blondie walked from the car and up the hill to the field. On the way I saw people looking and I was sure they thought I was a terrible mom because I was about 10 feet ahead of Blondie, and determined not to help her. It took a minute for me to realize that several different families that I didn't know were clapping for her. They were cheering her on up the hill. I have to say that moment helped me realize that people were quietly watching what we did, and taking their cues from us. We don't baby her. She must do things to the best of her ABILITY, not avoid things because of a disability.

So for those of you who are tuning in or learning that your own child, or your friend's child, is suddenly disabled, don't look at what can't be done. Don't think in terms of "victim" or use words like catastrophic, don't hand me the "Holland" article. Just celebrate with me when my kid finishes swimming in the pool, or walks up the hill, or learns to read in Kindergarten. Please include all of my kids in daycare, and soccer, and softball, and skiing, and whatever the heck they want to do. Kids like Blondie will figure out how to do it their way - will it test your patience - probably, as well as every ounce of your coaching skill, but don't do it for them. Let us know that you recognize how far they have come, but move on in the conversation. Ask us about our other kids, or work, or our vacation because other things have happened today that had nothing to do with Rasmussen's or whatever the difference is between my family and yours.

It is a hard fence to walk sometimes. When you are in the middle of dealing with it, it is the only thing you can see, but ever so slowly you start to notice other things, and then you can go a whole day without thinking about it. Those are my favorite days.


ashesndusty said...

Thanks so much for that post. I had just recently been worried about the things Addie Kaye was not going to be able to do. And then I look at your daughter and know how things will be and to look at the things she will be able to do.

Paige Tracy
Addie Kaye's mom

Hollis T said...

The "how do you do it" is one of the most frequent questions we get as parents of a child with cerebral palsy and epilepsy. I always respond, "It's all we know, so we just go with it". My daughter has many developmental delays, but she also is the strongest, feistiest, most determined and funniest kid you can imagine. She just had her hemispherectomy July 11th, and she's already back to her normal self, outside of being extra tired. I don't know if I could say I'd be in the same shape after such a surgery.

Hollis's Mom (Jess)