Wednesday, June 22, 2016

This is what it means to be open-minded about disability



Max has been asking about tap dance lessons ever since he went to the showcase for Sabrina's dance school. He loves to dance and likes to rhythmically stomp his legs as he watches TV, so I thought this could be great for him. He wanted to take the lessons at Sabrina's school, because he'd like to star in the show next year.

Of course I was going to ask. I thought starting off with a private lesson would be best—just Max and a teacher one on one, and me willing to pay for that attention. Still, I was apprehensive about the response I'd receive. Openness to accommodating Max in programs for typically-developing children has not been my experience.

I am not one to be easily beaten down; I'm of the Mack Truck Mom variety. But my heart hurts for Max when places aren't open to including him, like that kid program at a hotel a couple of years ago and various camps and programs I've approached over the years. I have heard and read many similar stories from other parents facing the same. My friend Hallie has a sweet daughter with Down syndrome who couldn't return to a camp she'd attended last summer because staffers felt it was too much work to assist her int the bathroom or deal with the fact that sometimes she had issues walking around in the heat.

Besides being heartbreaking, it's downright infuriating when programs don't welcome our children. Why do people who regularly work with children and youth think it's OK to slam the door closed on those with special needs?  Including kids in events and programs isn't as costly or hard as people might think (here's a helpful post about that from the CEO of the nonprofitKids Included Together).

To be sure, the Americans with Disabilities Act demands "reasonable accommodations" for people with physical and cognitive disabilities. Problem is, "reasonable" is a gray term and the law also lets people off the hook if the accommodation poses an "undue hardship," such as a financial one.

Mostly, it takes an open mind. As the parent of a child with special needs, you are always hoping for those open minds.

So I emailed the owner of the dance school. I told her how much Max had enjoyed the performance, that he had cerebral palsy and that he was gung-ho to tap dance. I asked if there would be someone on her team who would be willing to try a tap and/or dance lesson. I said I would do anything to enable Max, and would be happy to discuss possibilities.

The owner responded yes, seemingly without hesitation. "Generally, our privates are an hour—but we can tailor to make it to whatever works," she noted. "He may want to come in to try tap shoes on at some point.... Honestly, I think this is a wonderful idea and I am happy and open to help in any way possible."

And it was that simple. She didn't ask a single question about his CP or his abilities. Her approach: We'll figure it out. How much richer our children's lives would be if only more people had that attitude.

We'll be trying a lesson after our vacation next week. Who knows where this will go. No matter what, I am excited and elated that a door was held open for Max...even as a part of me wishes this weren't so rare.

7 comments:

  1. It makes my heart sing that this dance school opened themselves out to accommodate Max. Despite recent events, it's stories like these that reminds me that there sure is faith in humanity. Good read Ellen! - R

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  2. I'm so happy the dance school will accommodate Max with open arms! I can't wait to hear how it goes

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  3. Yay!!!

    I too have had places try to turn me away because of my disability (even though I wasn't asking anything "extra" of them), so I know the feeling, and I'm so glad that didn't happen for Max.

    I understand that some needs really are difficult to accommodate, but when it's possible, it's great to see kids get these experiences just like their siblings and peers.

    Max is going to be the coolest dancing fireman ever!

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  4. I'm so happy that the dance school is willing to accommodate Max! I did tap lessons when I was little (3-5) and Fireman Max, it's a ton of fun you'll love it!

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  5. Tap is hard. I did a simple tap number in a drama camp and it was still very difficult.

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  6. YES! This is exactly what it's all about- just being open to the invitation to include. I was a tap teacher for years, and I'd be happy to help the teacher in any way possible (although, it sounds like she is going to be just fine!). Max will have a blast! Tap dancing is the best!

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  7. Best of luck to Max! I have a 6-year-old daughter with CP, and she just completed her 3rd year of ballet and tap at a wonderful school, and it is truly therapy for her! She loves to dance. We tell her teachers each year that while she has some limitations in what she can do with her right arm and leg, she has no restrictions on what she should be encouraged to do. I cried when I saw her raise BOTH arms straight up above her head in this year's recital! We see improvements every year. I hope you have just as wonderful an experience with dance as we have.

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Thanks for sharing!