Including My Kids

This week, we are THRILLED to be sharing this heartwarming post by Katie Butts, author of Baseballs, Butterflies, and Blessings. Katie is the mom of two awesome kids who have different physical disabilities. Please enjoy her beautiful stories about the power of inclusion.

My four-year-old daughter takes a weekly dance class and loves it.   She loves the tutus and the hair bows and the twirling. She especially loves watching herself and her friends in the big mirrors. My daughter also happens to have arthrogryposis. This condition affects her joints and often causes a limited range of motion. Ellie knows she has something that causes her to fall a lot but has no idea that doctors once predicted she would be unable to do many of the things that bring her great joy today.

I really wanted Ellie to be able to participate in a dance class this year with her peers, but I knew she would sometimes need help moving into certain positions. Last week, Ellie came out of dance so happy because she got to be the “bacon.” I had no idea what she was talking about, but I was happy because she was happy, and we proceeded with our day. Later, when talking to her assistant, Sarah, she mentioned the bacon.

katiebutts2Apparently, in dance last week, the girls were all instructed to curl their bodies up like eggs. This is hard for my Ellie’s body to do. Sarah could have had Ellie sit to the side and watch all of the other eggs. She could have tried to force something that might have been painful for my daughter. She could have escorted Ellie out of the room for that song or made her sit on the side. She could have made it awkward or uncomfortable for Ellie or others. Sarah did none of those things. In that moment, Sarah had an opportunity to think fast and creatively and promote inclusion. Sarah announced that she and Ellie would be the bacon and would lie flat beside the eggs.

No wonder my daughter was so happy! Bacon is much better than eggs!! My heart was so full – not only at how this teenager thought so quickly and creatively but also at how happy my daughter was that she felt included.

katiebutts1I am the mom of two kids with differing physical conditions. My son, Will, is an amputee missing partial hands and both feet. He is 7 and attends a mainstream class in a private school. Despite not having full fingers or hands, he writes the most beautiful cursive. He plays tennis well and spends his afternoons chasing and playing with his sister and neighbor kids. To promote inclusion at his school, Will and I wrote a book highlighting all the typical kid things he does – swimming, playing, bike riding, etc. It also teaches basic vocabulary and terms to kids about his specific differences. Together, we read it to his class so that they understand Will is different, but also a lot like them. They can also ask me any questions they have (kids are so very curious) and then move on to being friends with Will. I will never forget when I read the book to his kindergarten class. I was so nervous and praying so hard that he would be included and okay. I had no idea how in the world I was going to walk out of that campus and leave him all alone with those cute little potential wolves. As I finished the book and asked for questions, several hands shot up. I braced myself – we’ve had some pretty difficult questions from little curious kids before, and we’ve faced a few cruel kids, too. One child told me he could run fast like Will and another said she liked his shirt. I suddenly knew he was going to be just fine.

When we were pregnant with our son, my husband and I agreed that we were going to give Will the most “normal” life possible. For us, a big part of that has been inclusion. I’m not sure I’ve ever really thought about it in such a formal way, however. I’ve simply expected others to include my kids! I haven’t made it an option for people not to include them. When my child has expressed interest in trying a sport, for instance, I’ve expected the team to let him play. So far, our attitude of expecting the best out of people and assuming that our child has equal rights to participate has worked out for us.

I’m not so naïve as to think it will always work out easily, but I will cross that bridge when we get there. Over the last few years, as I’ve watched baseball and soccer teams, classrooms, and strangers at the park include my children (for the most part). That has become my vision for an inclusive world. I want a world for our kiddos (all of our kiddos) where kids don’t think twice about having someone with a disability on their team or in their office or their school. I want to get to a point where the conversation isn’t needed. I can’t wait for the day when I don’t need to call ahead and prepare a coach before the first practice or call around to find a music teacher willing to be creative and think outside the box so my child can learn to play the instrument he wants to. As more and more parents encourage their children to try new things and to put themselves out there, I have great hope that this dream may be a reality soon.

A few weeks ago, my son had a new friend over to play. They played legos, had races indoors and outdoors, played superheroes and were typical little boys in every way – except one. My son, of course, is an amputee and his friend is in a wheelchair. At one point, I looked out towards our backyard and saw both boys up high in our fort- without their prosthetics or wheelchair. Somehow, they had each quickly scrambled up that thing and were busy playing up high – just like typical little boys. It occurred to me in that moment that apparently no one had ever told them they couldn’t do something. Again, my heart just about spilled over – so grateful for my own little boy and his courage and confidence, but also for his new friend and what little warriors these two are together.

katiebutts3As a parent raising two kids with physical differences, I think my role in promoting inclusion starts at home. I can’t make the world perfect. I can’t make every group inclusive. I’ve certainly cried some hot angry tears when I’ve seen kids exclude my children. I realize we will face hard days. But I can promote inclusion every day at home by teaching my kids that they can. They can live life their way, and that works. They can include others who may have differences. I can’t wait to watch them as they continue to grow up and inclusion becomes a way of life. That’s what my hope is for our children – that being included (having a chance to compete or work beside others) will become natural and a lifestyle for everyone.

–Written by Katie Butts, author of Baseballs, Butterflies, and Blessings and mother of Will and Ellie. Edited by KIT Staff.

Kids Included Together (KIT) is a non-profit located in San Diego, CA and Washington, DC. We help make the world a more inclusive place by providing live and online training to people who work with kids. We teach strategies, accommodations and best practices to include kids with and without disabilities in before & after school programs. Inclusive environments create stronger communities. Learn more about our work at www.KITonline.org.

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