By Caitlin Shockley, Program Assistant
Here at FACT, our passion for inclusion is enormous. We believe in the power and fundamental importance of community. We support it. We preach it. We encourage it. We champion the cause, and hope to make a difference for other Oregon families in accomplishing a whole life of inclusion and acceptance for their sons and daughters. And we strive to make inclusion a reality for our own kids, too! Remember, all FACT staff members are parents of children who experience disability.
While our passion for inclusion runs high, we never tell you (or ourselves) that it’s easy. The world doesn’t always say, “Bring your kid! She’s so welcome here!” But, we must be careful not to project an unwelcoming, unaccommodating world onto one that is really just inexperienced.
It’s easy to self-segregate as parents of kids with disabilities. It’s messy and challenging to put ourselves out there. But let me tell you from experience, it is so very worth it. A whole life is worth the frustration, challenges, and stress. It’s worth it for your child’s self-esteem, pride, joy, breadth of experience, depth of potential friendships, and the chance to exercise their natural, inborn right to see and do the same things as their peers. It’s worth it for a parent’s chance to experience the quintessential parental celebrate-your-kid’s-accomplishments rites of passage, whether they take place in theater, stadium, field, studio, camp, classroom, or school gym.
This fall, Ramona, my 9-year-old, wanted to enroll in dance class in one of our local studios. Ramona experiences intellectual disability, low muscle tone, speech delays, seizures, and many other medical issues. I only list these to paint a picture, in case you can relate her abbreviated diagnoses list to your own child’s. Ramona is currently homeschooled for a multitude of reasons, and I didn’t want to lose her connection to community and age-appropriate experiences and activities, so dance seemed like a wonderful idea. This was not Ramona’s first time participating in a dance class. One studio, out of town, was just not a good fit; the attitude was definitely unwelcoming.
I enrolled Ramona in a jazz/hip-hop class, paid the tuition fees, and filled out all the paperwork before reaching out to the staff. I was honest, of course, in the medical history form, but never asked permission for her to participate; I didn’t ask if they taught other kids with disabilities, or if she was qualified to join. After all, it was a level 1, no-experience-needed class. She qualifies, disability or not! I reached out to the teacher, and told her how excited my daughter was, how cool she was, and shared her many strengths and how she communicates. I also said I’d observe her in class, in case we needed to add in simple supports (like a sticker on the floor or a break). I did not offer to assist in teaching Ramona or participate as a support person. She did not ask me to, either. Sometimes I needed to take Ramona to the bathroom. Otherwise, I never got up or stepped in, and let the teacher do the teaching. Over the course of the term, it was clear Ramona, just like the other kids, paid more attention and worked harder when Mom was out of sight. So then I began to wait downstairs. Amazing!
But it didn’t fall into place seamlessly or without hardship. On the first day of jazz/hip hop, Ramona was distracted and overstimulated. She didn’t stay in her virtual “spot” in the line up of eight kids, instead wandering around to greet them all, just inches from their faces. There were already stickers on the floor, but that didn’t seem to matter. Ramona didn’t even attempt most of the moves (granted, some her body simply won’t do), and was in her own world half of the time.
Full disclosure: I was uncomfortable and sad. I felt anxious pangs when she was out of place or getting into the other kids’ personal space. I thought they must be so annoyed with her, and the fact that Ramona didn’t seem even slightly aware of these social precepts, well, that made me fall even deeper into discomfort and negativity. As a result, I felt horrible about myself for thinking those things about my own amazing kid whom I love more than life. I’m an advocate! I’m inclusive! I enrolled her knowing she would have support needs and look different. I *knew* none of that should matter when it comes to participating! What the heck was my problem?
But Ramona had a good time, and the teacher was great at redirecting her and didn’t seem even slightly annoyed or irritated. We left quickly, and I wasn’t sure if we’d be back. Coming home, Ramona was so excited to tell Daddy about her dance class, and said she couldn’t wait to go back there. I felt worse, mostly about myself! After bedtime, I talked to my husband and admitted how I was feeling about the whole thing. I also shared that what mattered most was what Ramona wanted, not how comfortable I was. Not how good of a dancer she was. Not what other kids thought. Not what other parents thought. Just what Ramona wanted.
I had to make that a mantra in order to overcome my apprehensions. We switched the talk to supports, and came up with a few: a bigger sticker and a daily check for understanding that she “was on her spot”; the same sticker/spot for every class (the other kids were great at accommodating this need). A reminder talk before class about staying on her spot, and giving people space. A full tummy.
Most importantly, I needed to let go. Back off. Let her be. Let her teacher be. Trust that kids will be nice, parents will care more about their own kids, teachers will be smart and inclusive, and Ramona will do her best and have a good time, and that’s all that really matters. It’s natural to feel overprotective and err on the side of safety and segregation, leaving no opportunity for failure or disappointment. It’s natural to want your kid to be accepted and liked 100% of the time, period. It’s natural to worry. But disability is also natural. Inclusion is natural. Kids being together is natural. Looking different and having different needs is…natural!
The second class was totally different from the first. The supports worked well throughout the remainder of term. Everyone was nice, and I just let myself enjoy and celebrate the slightly out-of-sync, but happy and adorable dancer. The kids were always friendly, and really didn’t seem to notice or at least care that Ramona moved differently. Why should they? Ramona beamed with pride and joy and always, always wanted to go back the next week. I chatted with other parents. The season continued in this fashion, and it was wonderful.
The Christmas recital time came around, and again, Ramona was fully included in routine set to a hip hop rendition of Deck the Halls. Her teacher and I made sure there additional markings on the stage, and placed Ramona in the lineup strategically so she’d have another child to follow, and be able to get a few cues from the teacher hiding backstage. She didn’t have a separate part or a different dance. She just modified her moves as needed and did her best, like everyone else. Ramona didn’t have even a inkling of stagefright for her big debut. It was truly a joyous time for Ramona, and she felt important and beautiful. My family and I were so proud and overjoyed at her achievement, grit, and loveliness. That is a gift worth all the frustration I endured in the beginning. That is the payoff for trusting humanity, taking risks, and just putting yourself and your son or daughter out there, according to what they want for themselves!
Take a look at this clip of my girl on stage. Inclusion is just beautiful! It doesn’t have to be perfect. Ramona is enrolled for the next term of jazz/hip hop, and is already gearing up for her second performance. I’m sure she’ll be fantastic, as always!