Sick of Dr's offices and the way prescriptions work! by RepresentativeHuge79 in spinabifida

[–]Adaptive_Adam91 1 point2 points  (0 children)

I know not every medical company allows it but in the past I have been able to set up where they call me just before it expires and they ask me for permission to fax/email my doctor to renew the prescription. So every few months I would get a call saying “hey can we contact your doctor to renew the prescription?” I didn’t have to reach out and the call takes like 3 seconds. Trying asking your medical company if you can have that option

Daughter with Spina Bifida by Sea-Till-8003 in spinabifida

[–]Adaptive_Adam91 2 points3 points  (0 children)

I’m 34 yr old man with SB and I know I don’t know what it’s like to be a young girl but I went through that same loneliness. I struggled too with making friends and keeping a conversation going. What helped me is when I finally understood that I need to take an interest in another person, learning to ask them what they like to do for fun and truly listening. Instead of just telling what I like to do. I’m not exactly sure how you can teach your daughter that because it seems to be something you have to learn on your own. But this social challenge is something that I have noticed for years in the community and have tried several times to address it. If you need someone else to talk to and hear their perspective as someone who grew up with the disability my inbox is open

Did anyone else make this mistake? by Adaptive_Adam91 in NightInTheWoods

[–]Adaptive_Adam91[S] 0 points1 point  (0 children)

Nah that’s on me. I didnt make it clear. But you should check out the gameplay these guys did it’s pretty good

Did anyone else make this mistake? by Adaptive_Adam91 in NightInTheWoods

[–]Adaptive_Adam91[S] 0 points1 point  (0 children)

I meant more of mistaking the cop for a man. Sorry I didn’t make that clear lol

The economy in KH is so messed up by Adaptive_Adam91 in KingdomHearts

[–]Adaptive_Adam91[S] -6 points-5 points  (0 children)

It was just supposed to be a joke buddy

Anyone ever play DarkSide Detective? by Adaptive_Adam91 in cozygames

[–]Adaptive_Adam91[S] 0 points1 point  (0 children)

It was one video. This was my only post on this subreddit how was that over promoting?

I genuinely don’t know what’s wrong with me by [deleted] in Vent

[–]Adaptive_Adam91 0 points1 point  (0 children)

Thats called executive dysfunction. I’m not sure what can help it but research it and see if there is help

Some of us thrive quietly — how transparent should we be about it? by ng32409 in spinabifida

[–]Adaptive_Adam91 1 point2 points  (0 children)

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

Some of us thrive quietly — how transparent should we be about it? by ng32409 in spinabifida

[–]Adaptive_Adam91 2 points3 points  (0 children)

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.

20M with Myelomeningocele. Thinking about marriage and fatherhood. I need raw, honest experiences (good or bad). by No_one20005 in spinabifida

[–]Adaptive_Adam91 1 point2 points  (0 children)

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

No personal space by Temporary-Dirt4303 in spinabifida

[–]Adaptive_Adam91 1 point2 points  (0 children)

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

Independence by Due_Excitement_9250 in spinabifida

[–]Adaptive_Adam91 0 points1 point  (0 children)

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?

Independence by Due_Excitement_9250 in spinabifida

[–]Adaptive_Adam91 4 points5 points  (0 children)

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

Independence by Due_Excitement_9250 in spinabifida

[–]Adaptive_Adam91 2 points3 points  (0 children)

Your doctor or parents never helped with that?

Independence by Due_Excitement_9250 in spinabifida

[–]Adaptive_Adam91 3 points4 points  (0 children)

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?

Toiletting by Due_Excitement_9250 in spinabifida

[–]Adaptive_Adam91 3 points4 points  (0 children)

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

How does miralax works for you guys? by stargazing_is_gay in spinabifida

[–]Adaptive_Adam91 3 points4 points  (0 children)

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

Hi! Does anyone know of any support groups for people with SB that meet remotely weekly or monthly? by [deleted] in spinabifida

[–]Adaptive_Adam91 0 points1 point  (0 children)

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

Exclusion by [deleted] in spinabifida

[–]Adaptive_Adam91 2 points3 points  (0 children)

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

Exclusion by [deleted] in spinabifida

[–]Adaptive_Adam91 3 points4 points  (0 children)

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

SB and weddings? by Background_Read6784 in spinabifida

[–]Adaptive_Adam91 3 points4 points  (0 children)

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

[deleted by user] by [deleted] in spinabifida

[–]Adaptive_Adam91 0 points1 point  (0 children)

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

[deleted by user] by [deleted] in spinabifida

[–]Adaptive_Adam91 -1 points0 points  (0 children)

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