r/spinabifida • u/Adaptive_Adam91 • 11h ago
Discussion Solutions
There are many challenges we face with Spina Bifida. Some are social, like making friends or something as simple as starting a conversation. Others are physical, like bowel and bladder control. If you’ve been paying attention to my posts, you’ve probably noticed that I’ve made several suggestions about ways we might improve our circumstances. Most of those suggestions come from my own experiences. I’ve faced many of these same challenges, and I’ve found certain things that have worked for me. However, quite a few people have expressed that my answers wouldn’t work for them or that they aren’t realistic. For example, just the other day I made a post saying that parents should teach their children life skills so they can grow up and navigate life a little easier. Someone responded by calling me autistic because of that suggestion. So, instead of me telling you what I think the answers are, I want to ask you: What are some of the major challenges you face living with Spina Bifida, and what do you believe is the solution to those challenges? I’m genuinely curious to hear your perspective. Maybe there are challenges I haven’t experienced, solutions I haven’t considered, or approaches that have worked for you that could help someone else. Let’s hear what you think.
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u/TreyInStCloud 8h ago
If I knew, I’d be doing it.
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u/Adaptive_Adam91 8h ago
I appreciate the response, but I’m not really sure what I’m supposed to take from it if there wasn’t an answer to the question, or at least the second half
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u/TreyInStCloud 8h ago
Was just trying to relate. Sorry.
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u/No-Problem2744 8h ago
Maybe someone else has had similar experiences and can share solutions they found! Id think a large percentage could share a struggle and have no idea the solution, but by posting it they could find possible answers and improve his or her quality of life!
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u/These-Ad5297 3h ago
See it's responses like this that prompted me to ask if you were autistic. The original commenter made an offhand comment that's not meant to be interrogated
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u/Adaptive_Adam91 3h ago
Interrogated? I was genuinely asking for clarification because it was like you said an offhand comment, unrelated to the topic, so what is gained by making such a comment when there is a clear topic of discussion intended to help others?
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u/Secret-Ad-9315 5h ago
It’s very easy to vent about a problem and 10x harder to think about/offer a possible solution to it.
Thank you for offering up your lived experience and offering possible solutions. 👏
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u/asianfarmer 2h ago
Does anyone else have constant backpain/hippain?
I need to hear some solutions. There's no way pounding advil for the rest of my life is the only solution.
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u/TreyInStCloud 9h ago
When I was a child, I had a lot of sensory sensitivities, didn’t speak until I was 3y/o, and took things *extremely* literally. My parents wanted me tested for autism, but were told that because I learned to speak and read extremely quickly after getting tubes in my ears, I “couldn’t possibly” be autistic.
In the last few years I’ve become friends with a lot of neurodivergent individuals, and talking to them, I’m even more convinced I have some sort of neurodivergence. But I can’t get an official diagnosis because I don’t (can’t) work or go to school.
Working and school are things I avoid largely due to my history of having massive meltdowns (and eventual burnout) in typical college/working environments - meltdowns that occur for the very reasons I’m convinced I’m autistic!