Spotlights and wheelchairs: allowing special needs kids on stage

Spotlights and wheelchairs: allowing special needs kids on stage



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MONTANA — The tricky part of motherhood, I’ve learned, is balancing the amount, frequency and thickness of the protective mental, physical and spiritual bubble wrap that your child is layered in.

When is it OK to let them watch a PG movie? Are sleepovers safe anymore? Can they really crawl down the stairs on their own? Will they choke on a grape or will I be peeling and quartering until they are 15? Can I trust them to ride their bike alone without getting kidnapped and held hostage in a backyard shed for 18 years?

I’ve also gathered in my 9-1/2 years as a parent that my particular brand of bubble wrap is ever in flux. I can never be prepared for all the cliff-hanger moments as a mother, but I can be ready for how I handle them ... with help ... a double serving, please.


I made it clear I didn't want her cast because of her disability, I just never want to be in the position of telling her, "No, you cannot do that because you have cerebral palsy."

A few months ago, I spoke with our amazing school principal of the possibility of Katie (my then-6-year-old) trying out for the Missoula Children’s Theater production coming to our school. I wanted to make sure it was kosher to encourage her to try out since she’d expressed interest. I made it clear I didn’t want her cast because of her disability, I just never want to be in the position of telling her, "No, you cannot do that because you have cerebral palsy.”

The principal, being the amazing human being he is, was totally on board and excited for the possibility of her in the show.

Gratefully, she made the cut, and I had the distinct privilege of being Katie’s handler — her shadow, her muse, and overall hover mother.

I despise those types. And yet, somehow I regress periodically, second-guessing my children — their capability to forge their own path and crack their own noggin. And I want to swaddle them, protect them and wrap layer upon layer of circular air-cushioned goodness.

My revelation

Day One of practice arrived, and I decided that the threat of Katie falling and getting hurt on stage is too great and she will just use her wheelchair. The directors are more flexible than a 5-year-old’s tooth dangling by a wee thread and are open to whatever. I think if I suggested she needed a pogo stick, they would have smiled and been fine with it.

The following day, I was chatting with Katie’s teacher and she wondered why we were using the wheelchair since they only use it at school for longer distances. Mrs. F is an amazing teacher, and I am grateful for being Katie’s greatest advocate by treating her like any other kid. I love her.

And now I love her even more.

I explained why I didn’t feel comfortable having her walk around, in case she got fatigued, blah, blah, blah. Mrs. F queried if I had asked Katie what she wanted.


But she got my non-bubble wrap side thinking that maybe, just possibly, I might, possibly, maybe, in a sort of smallish way … be a teensy bit wrong.

What? Ask her what she wanted to do with her own body? What a novel idea.

But she got my non-bubble wrap side thinking that maybe, just possibly, I might, possibly, maybe, in a sort of smallish way … be a teensy bit wrong.

Maybe.

The second day of practice, Mrs. F. stood by as I apologized to Katie and gave her the option of walking, which she grabbed like ice cream on a summer’s day. Her angel teacher even figuratively held my hand as we explained it to the directors who I’m sure were thinking, “I bet this poor kid eats Twinkies every night for dinner while watching R-rated movies. What a crazy Mom!”

All along, Mrs. F kept assuring me, “She’ll be fine. She can do it.”

I tried to smile back convincingly, but inside I was terrified.

I was terrified she wouldn’t know where to go or what to do and get bumped by the masses of children; terrified she’d fall and get a concussion (again) or bleed all over the stage, and then I’d be paying therapy bills for hundreds of children; terrified she’d be embarrassed; terrified she’d ruin the play for everyone else.

Worse, what if everyone turned to me and daid, “Why did you let her do this? Why is this poor child who struggles to speak and walk in a straight line here? On a stage of all places? Why would you allow her to fall? Where were you? This is your fault, you Twinkie-serving-implicit-TV-show-offering mother! You fail! Couldn’t you have made a normal kid? One that wouldn’t have ruined it for everyone else tonight? Huh?”

And that’s when I realized it wasn’t Katie I was worried about being embarrassed. It was me. I wasn’t worried about a gym full of people staring at her. I was concerned (as always) about them staring and judging me.

Watching and learning

As the week wore on, I was right there with her. Cueing her, walking her to the wings of the stage for every entrance, and helping her back to her seat for after every exit.

I saw her confidence grow at each practice, and by the last day during the performance for the school, she began to push me away, wanting to be just like everyone else. And that’s when I slowly began to realize I wasn’t giving her enough credit for being an amazing kid who is handling her disability with grace and joy. I needed to back off.

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Again, her angel teacher reassured me that she’d be fine if I wasn’t backstage with her for the last performance that night. Mary, her older sister, wasn’t really happy with that decision and tried to convince me to stay with Katie. She was quite worried she would have to be in charge of her.

So I asked Mary, “Who’s in charge of Katie?”

“You are.”

“Nope. Who’s in charge of Katie?”

"The directors.”

“Nope." (And this is when Katie begins to smile.) "Who?”

Mary shrugs as Katie’s arm begins to raise up — a little excited, empowered hand shouting, “I got this! I’m in charge of me!”

I was so proud of her, and at the same time trying to tame the freak in my head that demanded, “You can’t! You need me! You might fall without me!”

Thankfully, my inner-freak was wrong.

She did beautifully. She glowed and grinned, beamed and bloomed under the stage lights. There were no concussions, blood or threats of therapy bills. In fact, she was endearing to the audience.

I realized then that the school and community really loves her. During the school performance, I heard that every time she came on stage the kids whispered, “There’s Katie!”

They don’t think she’s a weird kid with a wheelchair. They know she’s a sweet girl who makes people feel happy and loved, that she has a goofy sense of humor and is really smart. Sure, she’s messy when she eats, but I didn’t give them enough credit to look beyond the leg braces, the drool and the struggle to speak.

They love her because she is a shining soul. That’s what we all saw on stage — her awesome, contagious, beautiful smile that was so grateful just to be like every other kid for just one night.

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Main Photo: The author with her daughter before Katie's performance with the Missoula Children's Theater. (Photo: Elizabeth Hill)


Elizabeth loves embarrassing her children and making others laugh. She currently resides in Montana among beautiful scenery, long winters and an incredible array of hairy animals.

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Elizabeth Hill

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