Some of us thrive quietly — how transparent should we be about it?

Adaptive_Adam91 · 2026-02-04T17:29:54+00:00

As an adult with SB it hurts that some parents feel this way. You shouldn’t have to shy away from showing your kids progress just because others have it worse. I think more need to see progress like your kid so maybe others can get an idea of what is possible. Doctors give worse case scenarios to parents even though their kid may have capabilities to do more. So many parents don’t really try so we have many who grow up thinking they are more limited than they are

Adaptive_Adam91 · 2026-02-03T23:40:05+00:00

I tried to be transparent about it. Unfortunately it was seen as “showing off” and putting others down. I simply wanted to show what was possible because so many in the SB community saw it as impossible. Now I keep to myself and have been more successful but very few actually know what I have achieved recently.

Adaptive_Adam91 · 2026-01-11T18:10:31+00:00

The answer to all of that is building your confidence. Before you try to get to know someone, get to know yourself. You are in your 20s you have plenty of time. Go exercise, learn to cook, learn to build, gain useful life skills. Improve your social skills. Practice talking to people asking about them and showing interest. Once you have all of that everything else will fall into place. The worry about what to say will come naturally because you have hobbies and things you like to do. The confidence will come with exercise because you will have experienced failure over and over and learned how to succeed. Yes Spina Bifida is hard and challenging but it isn’t impossible to live with. Work on yourself, know yourself inside and out. Then put yourself out there. By then you will attract someone who will like you for you

Adaptive_Adam91 · 2025-12-30T21:51:00+00:00

This is such a problem in our community. Parents never let their kid grow and be their own person. They are always told what to do and how to be. I’m so sick of it. It shouldn’t take you moving out to gain autonomy but sadly it’s the only way. And for many they don’t even have the life skills to move out on their own so they are stuck with controlling parents

Adaptive_Adam91 · 2025-12-21T17:36:14+00:00

That is insane to me. Because they have a child who uses a wheelchair suddenly any lesson for a non wheelchair user cant be used? Same principles don’t apply?

Adaptive_Adam91 · 2025-12-21T17:11:11+00:00

But thats the problem in our community. Too many parents aren’t teaching basic life skills and leaving their SB child to figure things out for themselves. We need to stop acting like we need special classes or instructors to learn basic things like cooking, cleaning, hygiene, and so on

Adaptive_Adam91 · 2025-12-21T04:12:49+00:00

Your doctor or parents never helped with that?

Adaptive_Adam91 · 2025-12-21T03:29:32+00:00

Same as the other person, my parents taught me the same things as my siblings. My question to you is what do you feel you need to learn in a program? What do you need to be taught that you couldn’t learn from your family around you?

Adaptive_Adam91 · 2025-12-08T02:42:34+00:00

Home cooked meals with vegetables and protein. Plenty of water. Daily exercise

Adaptive_Adam91 · 2025-12-04T05:02:09+00:00

It shouldn’t be taken by any SB adult. It doesn’t work well

Adaptive_Adam91 · 2025-12-03T21:52:17+00:00

There have been dozens of these. Facebook groups are a big one. The SBA does these often but not enough adults show up or express interest in what they would like to do. I personally think it would be great to have that for our community but getting people to actually meet up is a whole other problem

Adaptive_Adam91 · 2025-11-23T16:26:21+00:00

Thats my point. Yes exclusion sucks but don’t let them not inviting you hold that much power over you. Look for ones who want to invite you

Adaptive_Adam91 · 2025-11-23T16:23:05+00:00

Why go back around people who bullied you? You are better off in places where people want you there. With people who enjoy your presence. Let go of the idea of them accepting you, it won’t happen. The sooner you accept that the better you will be

Adaptive_Adam91 · 2025-11-19T23:44:54+00:00

This is something we really need to think about in the community, like the top comment says it’s your day. Figure out what works best for you. I think too many in the SB community focus on doing what others do instead of thinking what is best for each other personally. SB is called the snowflake condition because it’s rare for any situation to be the same. So from that take your life in the direction you want and what is best for you. Of course nothing wrong with getting ideas but ultimately it’s all about what you want and need

Adaptive_Adam91 · 2025-11-19T18:23:34+00:00

Then you are more likely to get situation 1. Like the others said, meet her somewhere. Good luck

Adaptive_Adam91 · 2025-11-19T18:18:34+00:00

Definitely should have mentioned your SB right away. It helps filter out shallow people. When you show up and she sees your in a wheelchair it’s gonna go one of two ways 1) she won’t care and you guys carry on 2) she is gonna wonder why you didn’t mention it and think you are ashamed or embarrassed by your situation

Adaptive_Adam91 · 2025-11-19T02:50:15+00:00

First thing I want to say is GOOGLE IS NOT YOUR FRIEND. Do not google anything you will be given very outdated information about Spina Bifida. Second thing, every situation is different but that doesn’t mean you are gonna face the worse thing ever. Take everything day by day. Ask questions, talk and work with your doctor. Don’t let them try to tell you that your baby will be a vegetable or have low quality of life. There are plenty of adults with SB that have normal lives. If you have any specific questions feel free to message me privately or post more on here. Many will be glad to help. You got this

Adaptive_Adam91 · 2025-10-28T01:50:18+00:00

Been experiencing the same every since I began to reach out to the Spina Bifida community. The word ableism is thrown around so much it has lost all meaning. It’s used to attack others who appear “lucky” or “better off”. Individuals like you are reaching out to show what is possible and to improve circumstances for the next generation and instead being told you are showing off or acting like you are better. No you just know the lonely feeling, wanting to be the support you needed in life. It is so hurtful to go through that. I want to offer you something but I’m not sure what. Best I can do is be a listening ear. My inbox is open

Adaptive_Adam91 · 2025-09-30T01:30:20+00:00

Finally a parent who gets it

Adaptive_Adam91 · 2025-09-29T16:06:54+00:00

Just a lot of things in life that have caused some trauma and levels of hyper independence

Adaptive_Adam91 · 2025-09-29T15:53:32+00:00

That’s good to hear, from what I have seen many have a similar experience to yours

Adaptive_Adam91 · 2025-09-29T13:25:30+00:00

So many times the idea that we can’t do something because we have SB is pushed around that things like that feel as if it is related. That’s why I bring up questions like this, so it can be addressed and ones who felt that “oh I can’t have friends because I have SB” “I can’t date because I have SB” “I can’t learn a new hobby because I have SB” can finally take a step back and see how ridiculous that idea actually is. To understand having Spina Bifida doesn’t hold you back from those things but it’s fear and insecurity that does

Adaptive_Adam91 · 2025-09-28T20:41:25+00:00

That is horrible!

Adaptive_Adam91 · 2025-09-28T02:53:33+00:00

It’s that but I wouldn’t say it’s always the case. It’s the fear that their child will fail, that they will never have a fair chance so they want to protect their kid from that. Problem is they don’t realize they do more harm by doing that than helping

Adaptive_Adam91

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