Chip Off the Old Blog

I’ve wanted to comment, many times, on a number of things related to our presidential election. There is plenty to be angry about, but I’m going to narrow it down to the most personal problem I have with one of our options: Trump’s mocking of Serge Kovaleski, the New York Times reporter who has arthogryposis. If you’ve forgotten, here's a link to the video.

My son has Down syndrome. Parenting my son has made me extra sensitive to how people talk about or treat others that are disabled. Ollie has hypotonia (poor muscle tone), which causes him to walk stiffly and with a bit of a waddle while he continues to develop those leg muscles. He has a g-tube sticking out of his belly for feeding and a trach required for breathing. Ollie struggles to control his arm movements, sometimes jolting them around randomly. He’s 6 and has a limited vocabulary, 99.9% of which is all sign. These characteristics are all things that we count as necessary or an endearing part of who he is that we love dearly. Unfortunately all of these things are also magnets for pointing fingers, lingering stares and cruel ridicule. If that isn’t enough ‘Down syndrome’ as a term is often used as an insult by small minded people when calling someone ugly or stupid.

I have all sorts of fears when it comes to my son growing up in this world, but a big one that’s always staring me in the face is how people will treat him. Supporting Trump, in my eyes, is giving license to treat someone like my son as less than human. Voting for Trump means you want a leader that’s okay with making fun of a disability to devalue a person’s worth and opinion. When you voice your support for that guy, that’s where my brain goes immediately, like it or not.

Over Valentine’s Day Ollie received a few bucks from doling grandparents, which spurred me to take him to the store and let him pick out a toy.  My mission was to assist him in finding something that would challenge him in a few ways.  For those unaware, Ollie is a five year old with some developmental delays in part due to early debilitating physical health issues as well as also having Down syndrome.  When Ollie plays on his own he usually chooses between cars and music/sound related toys.  While he’s very content with what he has, these toys aren’t tipping the scale toward creative/imaginative play.  It isn’t because there aren’t other options, he has a few action figures, blocks, drawing supplies, Play-Doh and more.  However, left to his own devices, he’d just as soon turn all of those items into dangerous projectiles rather than find constructive uses.  He just isn’t interested.

As we made our way up and down the aisles, Ollie came across a little digital display just high enough for him to reach the start button.  It was in the Teenage Mutant Ninja Turtle section (sweet!), so naturally advertised one of their new releases.  The toy is called the T-Sprint, a car-like toy with a twist.  The character itself has the wheel on it, so you have to “rev it up” before it takes off running, arms flailing as it goes.  The added bonus is you can also set him inside a little car that comes with it so it looks like he’s driving something as well.  Ollie’s eyes got huge after watching the video and he turned and gave me the “can I have that, dad?” super cheese smile. Natrually, I caved.

For Ollie, the toy is awesome for several reasons:

1.  He LOVES cars.  They are his absolute favorite thing. 

2.  It brings a toy car function he is familiar with and puts it into an action figure. 

3.  T-Sprints marry the action of the character having to get into the car for the actual car to go.  The car isn’t designed to move without putting the Turtle into it. 

4.  It also requires him to be more precise with his grasping ability.  If his fingers/hands get in the way of revving up the turtle, it won’t work.

Does the toy frustrate Ollie?  YES.  Is that okay?  YES.  The grasping piece is the hardest for him at this point as he is still working on coordination in general.  The cool thing is that regardless he keeps coming back.  He keeps trying.  It’s a challenging thing for him to do that is his own to play with.  He’s not being pressured in an occupational therapy setting.  It isn’t forced because it’s a school activity.  It’s fun and it’s on his own time and turf.

The R-Word is an exclusive term that is offensive and derogatory toward individuals with Down syndrome (among others) and the people that care about them. I understand the word is not always intended in a hurtful way, but it hurts just the same.

Today is the annual day of awareness to end the use of the R-word. Please join me in pledging to end the use of the word!

For more information and stories please visit Spread the Word to End the Word at http://www.r-word.org/.