visible disability Archives – Inclusion Evolution

The following includes memories from six moms of children with Down syndrome, including myself.

You might describe me as hard and cold. A slave driver even. I’m built of heavy metal. I can withstand the biggest blow a toddler can dish out. Parents begrudgingly bring me into their home. They really don’t want me there. I’m clunky and take up a lot of space. But more important I remind them of their child’s delay.

Still, I end up finding a place in their hearts and collective memories. That’s because I help their child accomplish one of the most visible and monumental developmental milestones of childhood: WALKING.

You’ve been there when parents gloat about their 9-month-old just standing up one day and walking. Yeah, I know. I want to run them over for you. You know what I want to gloat about? The real warriors. The ones who have to work ten times harder than any other kid on the block. The one who cries through therapy every week, but keeps on keeping on. These kids are hustling with me for months, just to prove they have what it takes. They can walk the walk!

Easter egg hunt with Troy and his twin (see the foam on the front of me)

My first warrior was Troy. A military brat, who was lucky enough to come by me through the windfalls of Tricare Military Insurance. Did you know not every kid like Troy just gets to hang with me for free? I’m usually an out-of-pocket expensive; a frivolity, I’m told. Hmph!

Anyway, this kid is a real bruiser, and stubborn as a mule. He knows what he wants and how to get it. I can respect a kid for that. Except for the fact that what the kid wants is speed and adventure and excitement. A little too much speed and adventure and excitement for me. And I’m a pretty fast, adventurous, exciting guy.

It got so bad Troy’s dad (a tough military dude) had to put foam strips all over me, because the kid kept ramming into things. Troy’s mom said I’d destroy her cabinets, but couldn’t she see it wasn’t me that was doing the damage. Troy has a twin brother, so that meant double trouble. Two kids seeing how fast they could race me down the drive way. The only bright side of this family was their travels. I left Nebraska for vacays in Minnesota, Michigan, and Florida.

I can’t tell you how lucky I felt to be passed along to my second warrior, Trevyn. Troy’s mom thought it wasn’t fair that other kids had to pay to play, so she told Trevyn’s mom to pass me along to any kid that needed me after Trevyn. And so the chain of kindness and fun began.

Trevyn is one cool dude, and so laid back. Mostly I stood in a corner, just chillin’. Of course, this worried Trevyn’s mom and two older sisters. They cajoled and prodded Trevyn to use me. But Trevyn and I were like “no man, let’s just be cool. Let’s just relax!” Trevyn’s mom said he must be scared of me. His sisters and even his big dad came over and pretended to walk with me to show Trevyn I wasn’t scary. Trevyn and I just laughed. The best was when Trevyn’s therapists added a swing-type seat to convince him to use me. You know what he did? He sat down, picked his feet up and swung. I love that kid!

Eddy was my biggest accomplishment thus far. This sweet little guy is a true warrior. Even through health problems and surgeries, Eddy always tries. I also got to go to school for the first time. I’m not bragging or anything, but Eddy’s mom says he wouldn’t have been able to navigate his school without me. He took me to all his classroom centers (play doh was our favorite). We even went to the playground together; the other kids were so jealous.

When Eddy finally walked independently at 3 1/2-years-old I wanted to cry tears of joy, and would have if I had eyes.

I left a mark on the next household I visited…literally! Gavin was just as wild as Troy. It was almost two years ago, but it seems like just yesterday Team Gavin was racing for the Gold. Gavin’s house was the perfect racetrack. The main floor was laid out in a huge circle. Round and round we’d race, burning the midnight oil. Even good racers crash sometimes though. We hit walls, doors, cabinets. But Gavin and I knew we blew the rods out when we left an indelible, circular mark on the wood floors. His mom was not pleased.

Can you believe I got double trouble again at my next stop?! I mean the likelihood of hanging with one set of twins (one with Down syndrome) is literally 14 in a million. When I was dropped off at LJ and Harper’s I thought I better start playing the lotto. But really, I already hit the jackpot with this family.

Nebraska winters are harsh, so LJ’s mom got the brilliant idea to take us to the mall so we could strut our stuff. LJ and I quickly became mall-rats, and our “Wednesday regulars” were amazed at LJ’s progress. Week after week they’d comment about how fast this cutie was getting as we window shopped.

I never knew love until my latest gig. After five arduous, testosterone-filled years, I finally got my girl!!!

It’s been the summer of love with sweet Emilee and I. We’ve only been together for 3 months, but I think this one’s forever. At first she would scoot over to me and play with my handles, but now she shrieks with glee as she stands up and tries to walk. I can’t wait to see this sweetie take off!

I feel truly lucky to get the privilege to teach these amazing kids to walk. My advice to anyone that will listen is that kids with Down syndrome deserve your respect. They work so hard to be included, and be seen for who they are: more alike than different.

Postscript: Thank you Kari, Jeanna, Tiffany, Kendra, and Stacy for sharing your sentimental and at times hilarious stories about your child with me. Although it seems that the delay in walking is fraught with worry for new parents, it also helped me realize that Troy really can do anything he puts his mind to. It’s been a joy knowing that the walker has been passed along to so many children, and made a small difference in their lives.

The old adage “don’t judge a book by its cover” never resonates with me more than after I had Troy, my son with Down syndrome.

I’ll be honest, I’m a conformist. A follower even. I’ve blended my whole life. I was never the richest kid, or the smartest kid, or the prettiest either.

But what happens when you can’t blend, because you were born to stand out?

My Troy stands out. His visible disability brings instant judgement wherever we go:

From fellow moms: “Can he climb those playground stairs?”

From other kids: “Troy, let me help you with that.”

From his teachers: “I am shocked that he’s potty trained and knows all his letter sounds! But we’re still not sure he can keep up in higher grades. May be you should consider a resource room.”

Even from sweet grandmothers: “Oh, those children are always so happy. Your son is an angel sent from heaven!”

These comments are all well-meaning, which is what makes them sometimes hurt the most.

In my experience, I can more easily ignore and shut out the uneducated jerk who treats Troy like the plague.

It’s the good intentioned comments that I receive on a daily basis that weighs me down. I at once want to hug them for their desire to “want what’s best for Troy,” and punch them for instantly and subconsciously assuming “he can’t.”

Their comments often catch me off guard, because 99.9% of the time ALL I SEE IS TROY—NOT Down syndrome.

It’s a constant internal struggle.

That’s why I simply adore a recent pick by my beloved book club called “Wonder” by Raquel J. Palacio.

It’s a pre-teen book (one of my personal fav book genres) about a boy named August (“Auggie”), who has a severe facial deformity. At 10-years-old he leaves the decade-long safety of his homeschooling career to enter a private middle school.

You can imagine the drama that ensues.

This thought-provoking, witty, and eloquently written book will have you reeling, especially if you’re directly connected to someone with a visible disability or just different.

Auggie is introspective, vulnerable, and hilarious.

The book starts out with Auggie declaring “I won’t describe what I look like. Whatever you’re thinking, it’s probably worse.”

He’s not a novel device or token disabled kid. Neither are the other characters, which I found especially fascinating.

There’s characters in the novel that never come to accept Auggie, or see him as anything other than “other.” But there’s also truly inspiring friends, who are amazing because they learn to see Auggie for who he truly is: a smart, funny kid.

I cried while reading the perspective of Auggie’s parents. They at once want to shield their child from this brutal world, but also push him to reach his highest potential. Any parent can find commonality in their story.

And the perspective of Auggie’s sister, Olivia (“Via”) particularly stuck with me.

I worry about the impact of Troy’s disability on my typical children, as much as I worry about Troy.

Will they resent Troy, or my husband and I for the extra care that Troy sometimes needs? Will they be bullied, because their brother is different? Will this visible disability ruin their life?

Via taught me to take a deep breath, and embrace the mess that is life.

Yes, she does some time resent her situation (don’t we all at one time or another), but she’s the only character who somehow inherently embraces her brother and pushes him to live life like no one else.

Get this book! Have kids you know read it. You won’t be disappointed!

The movie version, starring Julia Roberts, Jacob Tremblay, and Owen Wilson, was supposed to come out this past February. It has been postponed to fall of 2017.

I “wonder” if viewers will be able to embrace this movie, understand it’s impact, and not judge a book by its cover.

Tag: visible disability

Travels of a Posterior Walker