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Saturday, December 13, 2014

Fun Over Function: "The Special Needs Gift Guide" and Learning That Life Isn't All About Therapy

I’m back after a short hiatus and it’s that time of the season. Yes, the holidays are here! The snow is falling, my friends and I are trying not to fall, and the temptation to spend my entire SSI check on chocolates and holiday greeting cards is ever growing. After another year, the media has still failed to recognize that Rudolph was a victim of blatant disability discrimination, followed by shameless exploitation. I’ll have to wait until next year for that tell all TV special, but as sure as an overplayed Christmas song, a holiday classic has returned. Not sure which I mean? Of course I’m talking about the “special needs gift catalog”. This annual bundle of joy pops up all over the Internet, eager to make even a toy for a kid in a wheelchair criminally overpriced. Because that little piece of Velcro triples its cost, and requires the insight of a specialist, right? While they are very well intentioned, these special needs toy catalogs don’t make me feel very in the spirit.
While some of us may need something adapted, and it would be wholly impractical to buy me a Pogo stick, I don’t think our holiday interests are so outside the “norm” that they merit entire “special catalogs” and articles declaring what a “special” task buying gifts for us is.
According to one such article, “finding the perfect gift for a child with special needs is rarely as easy as popping down to the toy store, picking an age-appropriate gift, and wrapping it up.” Um. Because our wheelchairs and walkers and crutches (oh my!) must surely negate our interest in music, movies, and new clothes, right? These articles, written by “experts” of course, seem to be under the impression that while other people look forward to a very merry and bright season, we disabled folks must be seeking a very merry and therapeutic season.
While I adore all of my doctors and therapists, I think I speak for the vast majority of us when I say we’re thinking more about how many cookies would be remotely acceptable to eat at once than about the therapeutic value of our gifts. The famed "Toys R Us Gift Guide for Differently Abled Kids" (excuse me, while I gag on the euphemism), while well intentioned indeed, even goes so far as to classify each toy according to the corresponding developmental skill. Therapy can be important, it can help us do things we couldn’t do before, hell, it can give help us meet a best friend in the waiting room, but come on, people! Must even our fun be classified according to the developmental milestones we didn’t quite make? I thank my lucky stars this season that my mom and dad never used Christmas as an undercover therapy session, and that they never raced to the “gross motor skills” section of the catalog to fill my stocking. Perhaps they got the message that any attempt to develop my motor skills on Christmas morning instead of letting me just have fun was the equivalent of getting a lump of coal. Or maybe they noticed that trying to link together a Barrel of Monkeys with my palsy hands would make me feel like I landed on the naughty list. I realize that some disabilities make certain toys frustrating. Finding a toy or a gift that avoids frustration is a very worthy goal. But as a person with a lifelong disability, I encourage you to remember that “not frustrating” is not synonymous with therapeutic.
 It certainly would have broken my spirit as a kiddie if my sisters got to tear open their presents to be met by comments about how fun they looked while my presents were declared to “be good for my motor skills”.  One thing glaringly absent from these “special catalogs” is a review of how fun each toy is. I can’t recall a single kid who tore open a gift beneath the tree and shouted, “This will be so great for sensory integration!” I’ve never seen a depiction of Santa in which his bag is overflowing with Theraputty or obscenely priced adapted forks. Another special needs gift guide classifies items by "therapist picks" Again, I love PTs and OTs with all my heart, but where are the top picks from the kids who have to play with the toys?
Disability does not negate the need for fun, the need to do something mindless, the need to be just a kid. While I would be overjoyed at the production of wheelchair shaped “slice and bake” cookies, at the end of the day, I’m just a person, and especially as a child, all I wanted to do at Christmastime was have fun. I know when you have a kid with a disability, there is constant pressure to “do something” and it’s easy to get wrapped up in the therapy craze.

 But as someone who has had many years to learn the truth, I can tell you this. I remember very little about developing my hand- eye coordination or practicing my dynamic sitting balance. I don’t recall that bottle of Play-Doh and think to myself, “Fond memories of improving my motor skills!” I do remember, with great joy, being given a childhood in which fun did not always have to be paired with a functional skill. In between the appointments and the IEP “progress notes." sometimes it’s OK to skip therapy and get ice cream. Sometimes it’s OK to say, “Today I did ZILCH to address my left sided weakness. Today I lived… and it was awesome.” So, if you really want to know how to buy the perfect gift for disabled kids, there aren’t too many special rules. Think about what they like. What makes them happy. What looks like fun. What would make them believe in magic. Chances are, you can toss aside that occupational therapy catalog and buy a copy of that album all the kids are listening to. Because perhaps the magic of waking up on Christmas morning, or tearing open your Hanukkah gift is that you can be a kid, who in that moment, doesn’t have to give a crap about therapy.