IMG_8112We were at Kmart.  Dane was maybe four (but was large enough to appear seven).  ‘Grandy’ pushed Dane, in his adaptive stroller, over to the ‘Blue Icy’ station and was indulging the boys in a lovely little treat when an older gentleman decided to give his two cents.

“That boy’s too big for a stroller.  He should be walking.” The stranger blurted.

Grandy calmly retorted, “He would be, if he didn’t have cerebral palsy.”

It’s old as the ages I suppose.  Those who look handicapped are treated that way and those who don’t have the obvious markings of a disability are often treated like a lazy leper of sorts.

Well Dane is a beautiful boy with eyelashes that go on for days, a smile that lights up the room and an infectious, sophisticated sense of humor that would impress the highest of scholars.  But I assure you, HE HAS A NEUROLOGICAL DISORDER.

Dane can’t walk – period.  Not even close.  His abductors are so tight that his legs scissor whenever he’s excited or is just simply making an effort to do something, ANYTHING at all.  Because with the two types, of what has been categorized as severe brain damage, that’s just how he’s wired.

Dane’s hands are stiff and jerky.  His wrists don’t rotate, so whether or not he has actually grabbed the fork or crayon, that doesn’t necessarily mean he can control what he does with it.

He is aware of his bathroom needs (occasionally) but takes an inordinate amount of time to actually go. It’s no easy feat to lift Dane’s 54lb body out of his stroller, undress him, heft him onto the toilet, strap him into his adaptive toilet seat and then have to sit with him for what can often take an hour or so.

His toileting seat doubles as a bath chair, is bulky and awkward.  This chair would need to go back and forth from home to school to the tub to the gas station bathroom… and that’s only after we find a suitable bathroom, unload whatever groceries or luggage is behind him in the car (due to our rear loading handicap accessible minivan) and can wheel him in without finding an ‘Out of Order’ sign on the door. (Yes, that has happened.)  I’d wet my pants by then too.

We are struggling right now.  We are struggling with the expectations of his physical therapist, occupational therapist, special education teacher, psychologist, teacher, gym teacher, music teacher, speech, clinical manager, home health aide, classroom aide, the orthopedist, neurologist, the physician’s assistants, medical assistance, his health insurance provider, Dad, Grandparents, friends, family, strangers on the street, myself… I’m sure I’m forgetting several more.

I am his mom.  Admittedly, I baby him from time to time, but all in all I am acutely aware of what Dane is capable of presently, what we hope for him eventually, and what is most important to focus on at this time.

What’s important is that he be in class, not struggling to spend an hour in the bathroom sitting on a cold potty seat, awkwardly staring at his home health aide, when he could learning how to read.  Not struggling to use a fork to precariously poke at the pre-cut pieces of pizza that he could have easily picked up with his fingers instead of joining his peers on the playground for a full recess.  Following along on an IPad, or having his aide use ‘hand over hand’ instead of assuming he will ever have legible penmanship or ‘color in lines’.  Believe me, he will always leave some white space.  Dane can maneuver his way through the IPad better than I ever will.

I’m not trying to be combative, enabling or dismissive.  I just feel in my heart that I know what’s best for my amazing son.  IEP’s (Individual Education Plans) are great as a guide but the best laid plans…

We are sailing unchartered waters.  I couldn’t ask for a more dedicated and enthusiastic crew.  I need everyone to know, that no matter what, Dane’s growth and potential is at the heart of every decision I make and I will do anything, kill a shark, slay a dragon, write endless appeals to medical assistance… to make sure that he gets the best that life, the educational system, therapy and assistive technology have to offer.

I am grateful to everyone I mentioned for their assistance and guidance along the way.  We each might have different expectations for Dane but always the same goal.  I couldn’t find the right path to get there without them.

Just because Dane sounds like a little professor and looks like a gorgeous little Gap model doesn’t mean we can expect him to excel like everyone else.  He will excel, in the way that we guide him to do so, maybe not the way that everyone else does, in the same time, but by the way he learns best to express who he is, with the ability he was born with, helped by the surgical techniques and technology he has been blessed with.

Nope, it’s likely Dane will never color inside the lines.  And I think we’d all prefer it that way.