May 13, 2015

Hot Wheels

Growth in the land of Special doesn't just mean having to buy new pants and shoes.  It means having to buy new equipment.  Unfortunately, a new wardrobe for a growing child is pennies compared to equipment.  Whenever you see a piece of adaptive equipment, guess how much you think it costs, triple that guess and then put a zero at the end and you have the right answer.

Special moms have a love/hate relationship with new equipment.  We are beyond giddy at the thought of a new piece of equipment that will possibly make life a little easier or more comfortable for our child.  We stew over the possibilities of adaptive equipment for new features, new modifications we can add to promote new skills and independence, and, everyone loves a fresh shiny set of wheels after the numerous scratch and dents of their old model.  Love all that.

We don't love the months and months of paperwork, insurance back and forths, appeals, doctor's letters and visits that it takes to get such.  Each new piece of equipment equals hundreds of hours of administrative work and averages 6-8 months of time to acquire. Sometimes, we have already outgrown the new equipment by the time we receive it because the process took so long.

We also don't love one more thing -- the equipment.  It might sound confusing - we worked so hard for it but then we don't like it?  Don't get me wrong - finally receiving the equipment is the equivalent of Christmas Day.  Our heartbeat is quickened at the very sight of the rehabilitative equipment specialist just carrying that new piece of adaptive equipment off his truck.  But then it comes into your house, and your immediate first thought is, "THAT is HUGE!"

And that is when the sting hits.

The boy is growing.  A little itty bitty wheelchair for a three year old was much cuter. The bigger the equipment gets, the more the angst builds about the future.  Bigger equipment is a reminder that the future will be much harder than the present.

So with each shiny new piece of equipment, there is a piece of us that is ecstatic, and a piece of us that is crumbling inside at the same time.

I will focus on the ecstatic piece for now.  Because, how could you not with this new set of Hot Wheels?!

7 months in the making.  So many dozens of features that the untrained eye can't even detect.  Swing away footplates so he can learn to transfer in and out of his chair unobstructed with an angled footplate to match the angle of his restricted foot in its orthotic.  A custom seat back to promote better posture and hopefully stop the progressing curve forming in his spine, a custom seat cushion with individual air chambers that form to every curve of his bottom after you seal the valve once he compresses them with his weight and prevent the sores on his bottom from sitting in a chair all day, brake extensions so that he can reach his brakes better and use with less effort, special hand holds for his independently getting in and out of his chair, larger tires which equals less effort to propel so he doesn't fatigue as easily, rim grips for tactile support. . . the list goes on.

My favorite part was the part that Bridger played.  HE selected his chair color and hot wheels.  The boy has great taste!  I showed him the options for the spoke protectors and after he went back and forth for quite some time between the ones with beagles printed all over, the ones with monsters, and the green swirls, he finally settled on the green swirls.  Add to that his rubber light up casters and he has pimped his ride!  After a couple hours of some onsite adjustments, the boy gave it two thumbs up!

Bridger let me know approximately 200 times within the first hour of receiving this chair that he was most certainly going to take it to school the next day.  When I wheeled him into school, a 4th grade class was outside.  A bunch of boys shouted a 'hello' to Bridger and then immediately noticed his chair and started complimenting him.  Bridger's face swelled with his signature look of satisfaction and happiness.  They all slapped him a "High 5" as he wheeled past and for the first time ever in his life, he felt cool.

That is the part that made the stress of the equipment buying process and the anxiety of seeing ginormous oversized equipment melt away.

Bridger felt cool.

The story doesn't end there.  As with most new equipment, there is a whole additional process of adjusting and correcting once it is received.  I am off to Alexandria for 5 hours of my day tomorrow to take Bridger's chair to the wheelchair "body shop" for some custom tweaking.

Then there is the realization that this new bigger chair no longer fits in my car.  Do I get a new set of hot wheels then too??

To be continued. . .