When it comes to kids with disabilities, friendships can be a bit more complicated thing to navigate than with the average child. Effie is back from her story episode to talk about the ins and outs of her son Ford’s relationship with the world. She shares some truly heartwarming stories of inclusion and the surprising effects of putting LED lights on the wheels of his wheelchair.
We also dive into the dynamics of our relationships with friends and family that shift when we add our medically-complex children to the picture. She shares advice on how to keep closeness with them and the importance of finding your people that can really understand your life (ahem, us!).
This conversation was a fun one and I hope you enjoy it as much as we did!
Follow Effie and Once Upon a Gene podcast on Instagram: https://www.instagram.com/onceuponagene.podcast/
Follow me and The Rare Life on Instagram: https://www.instagram.com/the_rare_life/
Ep. 39: Inclusive Children’s Books INSERT LINK
Gary Gigantic Dream by Dr. Nicole Julia: https://amzn.to/35qAXyR
When Charley Met Emma by Amy Webb: https://amzn.to/2Lz8z6n
Friendship Circle: https://www.friendshipcircle.org/get-involved/families/
LED lights for wheels on wheelchair: https://amzn.to/35jzvOq
Friendship and inclusion are things that parents everywhere care deeply about for their children.
Will my child have good friends? Will they feel confident in who they are? Will they see themselves the way I see them? Will they be included by their peers? Will they include others?
It seems to be a given part of the mom-gig. Because we want the very best for our children, we naturally want them to have healthy and loving relationships outside of only us. And how complicated that seems to become when we have a child with disabilities. How complicated, how tender, how intensified it all becomes, including our projections of how their friendships may be impacted.
It was something I worried about before Kimball was even born! We learned he had several severe birth defects consistent with CDPX1, which typically comes with average cognition. I agonized not only over how I would keep him alive, but how I would be able to nurture his self-confidence within a society that even the most average of us struggle navigating.
I thought about my stages of insecurity of trying to fit in in middle and high schools. And I imagined what that would be like with physical differences like dwarfism and a unique-looking nose. Would other children befriend my child despite these features and medical complexities? Visions of bullying were quickly pushed away because of the pain it brought to imagine. I already felt the weight of it all—of building this sweet boy up in his confidence and love for himself and others in a world that seems to value appearance and “fitting in” so ruthlessly.
All of these fears and emotions were brought back as I chatted with Effie Parks about her 4-year-old son Ford about friendship and inclusion for her special topic episode. She admitted:
“I think about that a lot, especially when I'm waiting for the school bus. And I see kids walking up and down and, you know, I kind of get a little sad sometimes. And I wonder if Ford's ever gonna have friends at the bus and if all those things will happen.”
And although that fear is still there, she has had some incredible experiences with inclusion for her and her family.
Effie and her family often walk in the park, with Ford in his wheelchair. She sadly told me about how others would normally avoid eye-contact and jump out of the way when they saw them coming. It made them feel more isolated and “other” than ever.
But it all changed one day when a woman was delighted to see Ford. She ran to him, dragging her two teenage sons, and excitedly talked with him. Effie said,
“I didn't even have time to talk to her or do anything because I was just like, Oh my gosh, this was the most special and meaningful moment that has happened outside with Ford, ever.”
After that, she hopped onto the app Nextdoor, sharing what had happened at the park and how much it meant to them, with her community.
What happened next was totally unexpected.
Effie received more than a hundred messages telling her that they would look for her and her son next time they went to the park and say “hi”, and how appreciative they were to know how to react.
They even had invitations for playdates at the park. Her son and a couple other boys often meet up at the park. She told me,
“They just ride their scooters, and they go next to Ford and they aren’t awkward, and they aren't weird. They're just kids.”
This has meant so much to Effie! They feel so much more a part of their community and so much more included, and it all began with that kind woman who was excited to see Ford and talked to him like she would any other kid.
Effie said she also noticed a difference when they decked out Ford’s wheelchair wheels with little LED lights. Strangers now feel more comfortable approaching them to tell him how cool his wheel lights are. It’s a bit of an icebreaker and makes it feel less intimidating. Isn’t that just the coolest thing?
I’m bent on figuring out what we could do like that for Kimball’s hearing aids or cervical collar. I love it because it highlights these things as wonderful, because they are! All these devices aren’t sad—they give our children life and freedom. And it helps others see that they’re just kids. And having something that makes us more approachable is so key because like Effie expressed, it really is so isolating to feel ignored and avoided.
Give this episode a listen to Effie’s heartwarming stories firsthand, and to catch our thoughts on friendship and inclusion for the whole family—including us!
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