Wednesday, June 10, 2015

A Day in the Life of a Handicap Placard Holder

My 4 year old daughter weighs almost 30 pounds. She is not ambulatory, meaning she cannot walk unassisted. She has Rett syndrome, an irreversible neurological condition which doesn’t let her control her muscles. She wears orthotics (articulated AFOs) which weigh her down and restrict certain movements, but offer tactile input and improve stability. She often uses a walker- equipment which is not suited to her for multiple reasons. Her walker weighs 10 pounds; does not turn; and she is not strong enough to lift it and move it, or push it for more than 5 feet without assistance. Despite the mismatch, we force her to use this walker because it’s the only time she can control her hands. One of the stereotypical features of Rett syndrome is uncontrollable hand-wringing. For her, the hand-wringing is non-stop clapping, except when using this walker. Because Rett syndrome is degenerative and eventually robs girls of all functional hand use, we force her to use the walker in an attempt to prolong the inevitable: total loss of hand control, atrophied muscles and contorted hands.

Rett syndrome has also stolen her voice. So in addition to not being able to get herself around, she can’t even ask/tell/speak her needs/dislikes/pains to us. In order to communicate with us, she uses a speech-generating device which she controls using eye-gaze technology (infra-red cameras which track the reflection of light off her retinas). The device itself, a Tobii I-12 weighs a little over 6 pounds, while the stand + keyboard + mouse + cables add another 5. This brings the total weight of her equipment to over 20 pounds, or 2/3s of her body weight.

Getting her out of a car is a process. There is nothing quick or convenient about it! I always grab the Tobii and it’s accessories first since they’re the easiest to grab (in a backpack that I wear). Since she cannot control her body, her joints (elbows and knees specifically) often lock and I have to physically bend them myself, being careful to not break any bones (Rett also causes malabsorption of vitamins and calcium deficiencies) just trying to free her from her seat’s straps. She usually goes stiff as a board when trying to get her out of her car seat. She also recently developed seizures which are occurring when I wake her from sleep in her car seat. When the seizures happen, I stand outside of the car at her side, massaging her/wiping her tears/cleaning her drool/squeezing her limbs/holding her head upright and reassuring her that “everything will be OK” until the seizure is over and she recuperates. Sometimes it’s less than a minute; sometimes more than 5, but ALWAYS terrifying. Once I’ve managed to get her out, then I carry her to my trunk where I get her walker out. Then I stand her at her walker, grab my purse, and begin to pull her walker using a ghetto-rigged handle. This is usually done in a parking lot thoroughfare vs a disabled loading zone. And I do this despite having completed the even more arduous process of obtaining a disabled parking placard...for my 4 yr old.

Why would I endanger her, or myself, like that when it’s clearly not an easy, quick, or fun process?

Because there are inconsiderate people (see: assholes) everywhere who leave me no other choice. People who are not differently-abled, but rather lazy or late. People who have no issue endangering the life of a 4 yr old or a mother of three. People who like to say, “I’ll only be a moment,” or “I’m just getting something quickly.” And those are the polite ones. If I had a dollar for every person who has retorted with profanity, I could have a helicopter. I will never understand why innocent children suffer from Rett syndrome while others waste the blessings of mobility.

I would trade my life to change my daughter’s condition. Actually, I already have. I spend every moment fighting Rett syndrome alongside her. What’s not spent caring for her, or watching helplessly as she struggles in pain just to poop, is spent researching foods/medicines/exercises/toys/activities to better her quality of life. My day is spent shuttling her and her siblings all over town. I racked up 24,000 miles on my car since purchasing it in May of 2014. In order to fit all of her daily therapies and her siblings typical activities, our daily schedule doesn’t allow for mAny interruptions….like say someone blocking us into a handicapped space because he/she “was only going to be a minute.” That moment that was too significant for he/she to inconvenience themselves with WALKING but not significant enough to prevent him/her from inconveniencing someone else has ramifications- life and death ramifications. MANY of her specialists have waiting lists that are months long. Being blocked in a space has caused my daughter to miss appointments because we arrived late. So now someone’s laziness endangered her health! Another thing I’ll never understand is why people feel entitled to behave towards others in ways that they themselves would flip a lid over if directed at them. You’d be surprised how many people think it’s OK to inconvenience someone by double-parking behind them, blocking them in a space, simply because the only available parking spots are too far for them to walk.

The frustration that comes along with that disregard for human life often makes my cup runneth over. Will the next time be the day my proverbial cup spilleth over? The overwhelming stress a special needs parents deals with every second has been equated to PTSD. You don’t mess with them, why mess with the disabled? And really, what kind of person disrespects the basic rights of a helpless human? Who died and made you entitled?

So if you want to park in that disabled spot, PLEASE take my daughter’s disabilities. You clearly think they’re no big deal. Or better yet, DO park there and run the risk of someone like me making you an asphalt-crusted pancake. The less assholes the better.

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A wise friend once told me that the key to happiness was to 'Say what you mean and mean what you say'.