What I focus on when addressing my daughter’s mobility challenges
What dignity, safety, participation, and inclusion mean to this parent
The smooth, yellow rivets on the school bus caught my eye as it pulled up to pick up my 11-year-old daughter, Amelia. How often had I stared at them and not seen them? Then I noticed the grinning face of a young child waving at me through a window of the bus. My face brightened with a smile, and I turned to help Amelia up the stairs.
I asked if the little girl was new, and Amelia’s reply shocked me: “Mom, she is always there. She waves at you every morning.” I must have been on autopilot.
One thing that happens in life is that we go through the motions without thinking. I make morning coffee, get dressed, or look around for the car keys that are already in my hands (listen, it happens), all without needing to use my conscious brain.
When I look back at my life before Amelia began developing symptoms of Friedreich’s ataxia (FA), I was there, but I wasn’t always fully present. I was half thinking about work when I was with my girls or worrying about dinner when I was at the dance recital. But you know who snaps me out of this? Amelia.
Firstly, I am more conscious about how finite time and ability are because of FA. Secondly, I am keenly aware of what Amelia needs at different moments throughout the day and how I play into those needs.
Addressing mobility takes a lot and can be exhausting. If given a choice, I wouldn’t elect to have this barrier. But FA does not get voted into our lives.
Also, when expressing our needs or discussing what challenges we might face with others, I often feel like I am inconveniencing people. I have even apologized for it! But if I recalibrate my mindset, I can see something greater.
The benefit of thinking of others
Creatively thinking through the needs of others does something: It helps build empathy, problem-solving (a lifelong skill), and connection. It pulls us out of our silos and off autopilot.
When it comes to accommodations, I think about it in four ways, both as a mom and a social worker:
1. Dignity: Will Amelia feel an increase in her self-esteem, or at least leave the situation with it intact?
2. Safety: Falls and injury can happen to anyone, but are we mitigating the risk?
3. Participation: Are we doing everything possible so that Amelia can be involved as fully as possible?
4. Inclusion: Will Amelia’s participation foster a sense of belonging or deepen a sense of loneliness?
The great thing is that I don’t need to have the answers to these questions. By collaborating with family, school officials, medical professionals, and other partners, I can allow them entry into our world. I can provide them with a sense of increased well-being by contributing to our needs. I may allow them the space to slow down and lean into their gifts. I might even help them see the rivets on the bus and the smiling faces in the window that they’ve been missing.
So, instead of apologizing for ensuring that Amelia’s needs are met, I can respond with something more appropriate: You’re welcome.
Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.
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