In this guest post, Arica Altobello, Speech-Language Pathologist, caregiver and friend to KIF1A superhero Sadie, shares her experience planning an inclusive KIF1A Day event at Sadie’s elementary school in April. The next official KIF1A Day is April 28, 2022, but every day is an opportunity to teach others how to be a friend to our superheroes.
My name is Arica Altobello. I am a Speech-Language Pathologist at Lakeview Elementary in Negaunee, Michigan. I have had the absolute pleasure and privilege of knowing Sadie Scott for 3 years now. I am in a very unique position in that I have come to know Sadie both at school, as her speech therapist, as well as outside of school, as her caregiver. From the moment we met, I knew this little girl was going to change my life in a big way.
Fast forward from our first meeting to April 2021, where I see a KIF1A support group discussion about KIF1A Day coming up. I check the calendar and I see that I’ve got a little over a week to get plans together to make KIF1A Day at Lakeview Elementary happen. With Sadie’s family on board, I contacted my principal who was just as eager as I was to pull this off. We met and went over logistics. We came up with the concept and suggested that we order KIF1A stickers for everyone to wear on this special day. I contacted the fantastic crew at LoyalTees in Marquette, Michigan, who put together a design and planned to make us over 600 stickers within the next few days. We knew we wanted to have KIF1A Day be a “dress-up” day at the school. Sadie’s mother, Shannon, suggested we wear denim/jeans with the concept of “walking in someone else’s genes.” Anyone that knows me, knows that I love a good pun—how could I resist? My next step was to create a flyer that would be sent home with all staff and students describing Sadie, KIF1A, and what this day was all about.
Although my overarching goal was to create awareness for the KIF1A community and how KIF1A impacts Sadie, I also wanted to highlight the ways that Sadie is the same as any other kid. She laughs. She plays. She gets mad, sad, and sassy. She loves ice cream and listening to music. She loves the beach and going to the park. She’s different but also the same in so many ways.
After describing Sadie’s personality, I included a section titled: “Ways that you can be a friend to Sadie.” In that section, I talked about how to greet Sadie and how to interact with her. I wanted students to leave school that day feeling confident that they would be able to successfully interact with Sadie if/when the opportunity arose.
With our deadline approaching, running an apparel fundraiser felt impossible but with the push from a few co-workers, I got LoyalTees on the line and, once again, they stepped up to the challenge without hesitation. Following our conversation, I was sent t-shirt/face mask designs and we opened up an online store with a link that was included on our flyer.
The final piece of the puzzle was to create a video that would be shown in every classroom in the school. It’s purpose was to further celebrate Sadie’s similarities and differences. I compiled videos of Sadie doing “Sadie” activities (such as walking in her walker, using her hands to guide her in a room and standing in an adaptive stander) and Sadie doing “typical five-year-old” activities (such as playing with her peers, Sadie talking, hopping through a tunnel and going down a slide).
Our very first KIF1A Day was a massive success for everyone that was involved. Not only were we able to raise nearly $500 for KIF1A from our shirt/mask fundraiser, the conversations and discussions that were held throughout the school were nothing short of life-changing. Complex questions were asked and unique ideas for how to interact with Sadie were shared, all from the young minds of students at Lakeview Elementary. That night, while Sadie was at the park with her nanny, Sarah, there was another Lakeview student there that recognized Sadie. The student left to tell her friends that Sadie was at the park and came back with a whole group of Lakeview kids.
The group of kids were imitating Sadie’s play to engage with her and they explained to Sarah that, even though Sadie is blind, they know how to say “hi” to her. Sadie’s recess times at school are now filled with peers of all ages hopping alongside her in the sand or taking turns pushing her stroller around the playground.
With more time to plan for future KIF1A Days, my hope is to get a group going within the KIF1A community to organize, brainstorm and share resources for others to have KIF1A Day events in their communities and schools. A KIF1A Day can be as big or as small as you want it to be. Facilitating conversations about inclusion, acceptance and raising awareness is free and takes no time—all you need is a set of ears that are ready to listen. I thoroughly look forward to creating a space to plan and connect within the KIF1A community in the future and be of assistance in any way that I can.
Arica Altobello, M.A, CCC-SLP
Preschool Speech-Language Pathologist