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Community spotlight: Celebrating SMA Awareness Month
It’s SMA Awareness Month! And during the month of August, SMA News Today is spotlighting members of our community and sharing their real-life stories from their point of view.
First up, we have Alina from Estonia. Alina shares how her journey to getting an education wasn’t very accessible but that didn’t stop of her from trying. She chronicles the highs and lows of the accessibility (or lack thereof) where she’s from and shows us the importance of working hard towards our goals despite the roadblocks we may face. You can read it here.
https://smanewstoday.com/spotlight/more-accessible-areas-can-mean-freedom-people-disabilities/
How have you found workarounds when it comes to inaccessibility?
smanewstoday.com
More accessible areas can mean freedom for people with...
Alina Poklad, who hasn't let SMA stop her from traveling abroad, urges others to push for more accessible areas for people with disabilities.
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10 Replies
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We hope that you’re having a fantastic month! Here’s another story of perseverance in the SMA world. It’s always great to see individuals like Andrew thriving and I know I can relate to the struggles with acceptance and fitting in. What aspects of Andrew’s story can you relate to?
https://smanewstoday.com/spotlight/persevering-sma-faith-dimpled-smiles/
smanewstoday.com
Persevering with SMA through faith and dimpled smiles | SMA News Today
Andrew Cherico struggled in accepting living with SMA as a child, but embracing it as a teenager brought new richness to his life and smile.
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Awesome coming of age story. I think we’ve all been there at one time whether it was hating SMA or simply understanding the reality of it. I can remember being 13 and learning that SMA was terminal. I was so scared.
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We have another community spotlight for SMA Awareness Month! Meet Eloise, a teacher who redefines what it means to be a professional in education. Despite her disability, she has found creative ways to be the best teacher she can be for her students and hopes to set an example where her students can imagine all sorts of possibilities for their own lives. Eloise loves her job and is grateful to the SMA community for the support they have given her for her professional career.
Do you work? If so, what do you do, and what creative ways have you had to adapt to the role you’re in?
smanewstoday.com
Classroom is one place where teacher with SMA doesn't feel her...
Eloise Pillarella likes helping her students rethink what a "real" teacher or professional should look like and imagine their own potential.
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In this community spotlight, Luke Christie talks about how living independently was no longer financially feasible when he was having to pay for caregivers. He moved in with his parents and eventually created an independent living situation within their home.
I often think about what it’d be like to live independently. But I know that wouldn’t be conducive given the amount of care I need 24/7. So Luke’s situation would be a perfect fit for me and my needs.
What is your living situation like?
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Living on your own isn’t easy. Adding SMA to the mix makes it even more challenging. It’s great to see examples of different living arrangements. What works for some doesn’t necessarily work for others. Each scenario has challenges. What’s your biggest challenge?
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My biggest challenge would be finding 24-hour care. I can’t even find one shift per day right now. 🤦♀️ I need someone with me at all times, and with how unreliable caregivers can be, I’m not sure I’d be willing to take that chance. Unless I lived next door to a family member who could help out or, like in Luke’s situation, have my own “house” in my parents’ house.
I know you have your own place. How does your caregiver schedule work?
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My caregiver schedule is a mess right now. Even though I do live independently I go to my mom’s every other weekend because I don’t have the staff to cover it. I’m in the process of hiring someone but I may be letting my other weekend person go. So I’d essentially be in the same boat. Currently I have someone overnight and then for a couple hours during the day. Otherwise I’m on my own. There are benefits and drawbacks.
How do your parents feel when you have outside caregivers come? My mom can be kind of weird about that.
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I remember my mom telling me stories about how uncomfortable she used to feel when we first started having caregivers come into the home. I think I was around three years old when I started getting those services. Today it’s different. Of course, we don’t feel 100% at home when caregivers are here– just like we would with any other guest in our home. But they’re here to help, and we’re grateful for that.
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As SMA Awareness Month wraps up you can find all of the Community Spotlight articles here. Like Candice’s story of how she’s found purpose despite losing abilities. It was great hearing a parents perspective too. Kevin shares how his two boys have different ideas on what fairness looks like. Yet they have typical sibling dynamics. We’ve featured more great stories as well. Which one do you connect with? Or are you like me, do you relate to them all?
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I relate to them all in some way as well. But I have a soft spot for Kevin’s story about his two boys. It reminds me of the dynamics my brother and I had growing up. I always thought it was unfair when Adam could go outside and play certain things I couldn’t physically do. Snowstorms and all the activities they would bring were a great example. I’d watch him play from the window since my wheelchair couldn’t trek through snow. And of course, there were things he found unfair when it came to chores and the like.
Nevertheless, we loved each other and had a close relationship that still exists today now that we’re adults. What was your relationship like with your sister?
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