To the Parents

I have talked about my feelings and what I went through growing up. However, I haven't talked about what my parents went through during that period. I am the youngest of five kids; I have three sisters and one brother. All of them are able-bodied. So, you can imagine the shock my parents experienced when I came along. 

It's tough having a disabled child. Even more so when you have four other children who are fine. I imagine such questions came to mind such as, "Will I be able to communicate with my child? Will he live long? Will he be able to keep up with his sisters and brother?"

Back then they didn't have the technology available now, so my parents did not know my condition until I was born. Be glad for those of you who find out ahead of time; at the very least there is time to prepare mentally. After I was born, I stayed in the hospital for a month or so that was 45 minutes away from my hometown. You mothers, I want you to think about that: You can't hold your newborn in your arms for at least a month. The only way you can see them is through glass, as they are connected to all kinds of wires to monitor health. I don't know what my parents asked the doctors, but I know one had given my parents the best advice he could have given them: "Don't make his disability your disability. Treat him just like your other kids." As a parent you may think that's crazy. 

With everything your kid goes through, disability or not, you want to instinctively protect them. However, you can't protect them forever. You need to let them learn on their own. And that's what my parents did for me. I don't know if my parents knew of the challenges I would experience growing up, if they thought of what would happen as I got older, but they wisely handled each problem encountered. It is because of them that I am the person I am today. Because of them I show others that I can adapt and do things that others can't. 

I will admit there is a downside. I seem to fall in between being disabled and not, as discussed in a previous post. When I need to be seen as disabled and need assistance, I seldom receive the necessary help. Then when I don't need help, I am seen as helpless. All because I can socialize, I know how to speak to people. So, my advice to parents who worry about what your child's life will be like, don't worry so much. Just be a parent. Let the kids figure out what they can and can't do; they may surprise you! Talk to them like you would any other child. Discipline them just like everyone else. Remember, they are disabled, not unable.

Editor: Esme' Nicolson-Singh (redsbreadslady)

Daily Struggles

When it comes to Spina Bifida what daily struggles come to mind?

Someone who doesn't have SB may say simple tasks such as using the shower, cooking, or making the bed. While that may be true, sometimes the daily struggles include things such as paying bills, grocery shopping, and even transportation. Since I have become an adult those tasks have been a challenge.

There hasn't always been an easily accessible bus stop, and I have lived in an area so dangerous that I can't stroll down to the bus stop. So what did I do? Signed up for online banking and online billing. That has been a great asset. As for groceries, I still have to get rides from friends and family. That will change soon, as I am a few steps away from getting my driver's license. That is a story for another post.

I will admit due to these challenges, some may perceive irresponsibility on my part. They don't understand the hoops I have to jump through to get the simplest things done. I do get down at times, but I think back to where I was and realize I have come a long way.

You may think, "What about having a social life? Hasn't that been a struggle?" For me, it hasn't. Sure, when I was a kid I got picked on but who didn't. I learned to stick up for myself, become more sociable and because of that, I now have great friends. I will share more about my childhood in more detail in a later post. Please keep in mind, I am not pushing for things to be done a certain way; I simply wish to share my journey.

Have any other ideas? Comment below or message me. I'd love to hear your thoughts.

Editor: Esmé Nicolson-Singh (redsbreadslady)

Depression

Depression is something I have been struggling with since I was 17. It hits me pretty hard every once in a while, but I have negative thoughts every single day. Today is one of those days it is hitting me. 

Some friends may be shocked to know I struggle with it and how bad it is. My friends see me as a happy person, at least I think they do. I'm the guy people turn to for advice, so it's crazy to think the one helping everyone needs help the most. 

I think to myself most of the time, "Why bother? Why keep trying? Who wants me around? Who and why would anyone consider me a friend? You should just stay in bed today. Don't bother getting up. No one cares about me."

All of these thoughts are going through my head while someone is asking me advice on how to get someone to like them or how can they stop arguing with their significant other. Do I ever dump my issues on anyone? A few times I have. The majority of the time, I am listening. Times like this, I want to just disappear. Not exist for a bit. Get away from everything. But I can't. Things would only get worse. So I get up each day and continue with my daily routine. Some have it worse than me, so who am I to complain?

Editor: Esmé Nicolson-Singh (redsbreadslady)

Having a Job

I have only had one job in my life. One. Think about that for a minute. A guy that is 24 years old and only has worked one job in his life. Kinda sad, isn't it?

I would love to work, but I can't. As I mentioned before, I can't work because I collect SSI. If I do work, my health insurance is cut off, something that I can't let happen. Some would say it's great, earning money for doing nothing. Well, let me tell you it isn't. I feel worthless. It feels as if I am a waste of space. Each day I need to find something to do so I feel like I'm productive. It's part of the reason why I want to go to as many spina bifida events as I can. Something to fill my time and encourage others. 

My friends all have jobs and always stay so busy. It makes me think, "What am I doing? Just sitting here doing nothing". It is what it is. Does it make me depressed? Yes, very much so. But it gives me the opportunity to volunteer and help this generation of kids with SB. At least I have that going for myself. I hope that I really am making a difference and my advice helps a bit.

Is there something you'd like me to discuss? Let me know in the comments below.

Editor: Esmé Nicolson-Singh (redsbreadslady)

Feeling like an Outcast

Growing up I never felt like I fit in. I was always picked on. No one wanted to be around me, as if I was contagious. I never wanted to go to school because of it. Every day was the same. The kids would laugh and make fun of me or they would stare. I hated their stares the most. At school, I had to carry my medical supplies in my backpack and the other students would often find them. They would ask what it was and I would be too embarrassed to tell the truth.

My days in elementary school were miserable. I didn't get my first real friend until 4th grade. After that, I never kept many friends. I always had a small circle of close friends. What changed? To be honest, I have no clue. Even though I started to make friends, I still felt like no one understood me. No one would really know the struggles I go through each day, being in a wheelchair. I remember thinking things would be different if I had a friend with SB.

Now, as an adult, I am becoming more involved in the SB community. I see now I barely fit in, still. I think and act differently than most in this community. It's nice to meet others who have been through the same struggles I have, but sometimes that is all they want to talk about. The conversation can get very depressing that way. So, have things changed? No. I still don't fit in. Truth is, I never will and that's okay. As long as I am friendly with others, willing to take an interest in people, and not focus so much on myself things will be fine.

Editor: Esmé Nicolson-Singh (redsbreadslady)

Wisdom

For about 10 years now, I have had people come to me for advice. Some have told me it is because they see me as wise. Others have said I have a good head on my shoulders. I don't see either one of those in myself. I just like to help out when I can. I do notice that I have a natural skill at reading people and I appear to be approachable. Two qualities most people would love to have. 

At times it feels like a burden to have such qualities. Don't get me wrong, I enjoy helping people but at times it feels like it can be a bit much. Individuals have told me very personal things within 15 minutes of meeting me. Things that should not be said when you first meet someone. There are a group of people that I call my "clients". I would like to call them friends, but I know nothing about them other than their problems. When I have asked to hang out, they tell me they can't. But as soon as an issue comes up, I am the first person they call or text. Sure, I complain but I still help out the best way I can. Why? Because I would feel guilty otherwise. 

So if I would call myself something it would simply be a nice guy. What does this have to do with spina bifida? I honestly feel if it wasn't for my disability, I would not have the same outlook on life. I try to make the best of my situation. That is probably why people listen to what I say. They want the same outlook. The same happiness.

I usually tell people let things go. Do not hold grudges. Appreciate what you have and don't be so materialistic. Granted, my views are also based on my biblical beliefs but that is a topic for another time. My point to all of this? Those who know me don't think of me as this "wise beyond his years" person, I am simply a nice guy. And those of you who have SB, learn to appreciate your life. Make the best of your situation. You are disabled, not unable.

Editor: Esmé Nicolson-Singh (redsbreadslady)

High School

Most people talk about high school like it was the best time of their life. For me, it was a giant mess. 

It all started on the first day of school. I was on my way to school with my schedule in one hand and the map in the other. My transportation was what many of you would call the "short bus", so I was around mentally challenged students. Once we got to school, teachers were coming to get students for the special ed class. One of the teachers mistakenly thought I was going to the same class with the others. I'll be honest, I was a little offended by that. The teachers realized I wasn't supposed to go to the class and took me to one of the school counselors. 

The counselor was told to change my P.E. class to adaptive P.E. I informed her that was not needed and if she would please show me to my first class. The morning started off rough, but I got through it. Later that afternoon, I met my P.E. teacher and let her know I would be able to take her class. She saw no problem and let me go on my way. Soon after I was shown the locker room. One of the teachers there once again made an assumption and asked if I was in the right area. When I answered, he then asked, "when do you get out of the chair?". Once again feeling irritated, I explained I would be able to take regular P.E. with no problems. I was so glad once I got home. It was so annoying having to deal with that all day. 

After that, freshmen year was pretty simple. It was not the end of my problems for high school. Sophomore year started out fine. The teachers knew who I was and no assumptions were made. However, that year I had a big surgery scheduled. Each one of my teachers told me not to worry about school work, that I would be fine. Wrong. I was out of school for at least a month. Once I came back, I was falling behind. The rest of the school year, I was in home school. I caught up and passed with all B's. 

Junior year I was in for a surprise. I don't remember how it was brought up but I soon found out that I only had the credits from freshman year. Apparently, all the classes I took for home school were marked as special ed and not any specific subjects. That was the last straw. I was fed up. I was done trying. 

All I wanted was to go to school and get my work done. Nope, I had to face opposition every step of the way. Looking back, it was a dumb decision to give up, but I was too frustrated to think things through. Never did see my senior year. I dropped out. Do I regret it? Yes. I should have stuck it out. It is what it is. I can't change that now. My advice to you young ones, SB or not, is to stay focused. No matter what, do your homework. Do what you can to graduate. It will be worth it in the end.

Editor: Esmé Nicolson-Singh (redsbreadslady)

Disabled or not.

Once I became an adult, I have noticed that at times I am seen as disabled and other times not. When it comes to certain programs to help with transportation, getting my license, or housing, I may not qualify. Although when it comes to anything medically related, I am considered disabled. This has become very frustrating. 

You may think, "it counts where it matters, right?" Wrong.  I need help with transportation, housing, and getting my license. Sometimes when it comes to meeting people, I can't find that balance. One person may see me as completely helpless and ask things like how I get dressed, how I shower, and how I get through the day. Another will see me as a regular person which seems fine at first, until they expect me to do something I just can't do. 

This problem of seeing my situation as I need help 24/7 or I don't need help at all is a daily struggle. I don't know what to do to change it other than be myself, show what I can and can not do. I cannot change what other people think, only how I think.

Editor: Esmé Nicolson-Singh (redsbreadslady)

My Biggest Fears

Two major fears I have are disappointing others and losing my intelligence. I worry so much about disappointing those close to me. 

Growing up, I was viewed as the smart one, the good kid. I did well in school, A's and B's maybe a few C's. Once I got into high school, things changed. I'm not sure why, but I all of a sudden didn't do so well. That's when the fear started. I was no longer living up to my reputation. I was slowly letting my family down with each report card. The school staff didn't help much, either. I needed a few surgeries at a certain point, so I missed school, never really getting the opportunity for make up work. That was my own fault. 

At that point I was tired of trying. Thinking back, that was a foolish decision. As I began to get careless in my school work, I believe that is when my other fear set in. My intelligence was what I was known for. If I lost that, what did that make me? Just another "special" kid in a wheelchair? I tried to do better, but by then it was too late. I dropped out of school by 11th grade. Since then, I have tried to keep my mind sharp. I did not want to be seen as just some slow kid in a wheelchair.

It's been years and those two fears still bug me. I'm an adult now and yet I still worry about letting my parents down. Disappointing my closest friends. Am I the person they see me as? Am I still the smart kid I was back in elementary and middle school? I don't know. All I know is I am striving to be a good example. I want to show that, despite being in a wheelchair I can still accomplish great things. What about you?

Editor: Esmé Nicolson-Singh (redsbreadslady)

Exercise

Losing weight, the one thing so many of us strive to do. Once again, another situation that is a bit more challenging for me. 

While some exercise different parts of their body each day, I have to do what I can. The toughest place to burn fat would be my belly. The majority of the exercises to burn belly fat I cannot do. So I have to improvise--I use the Just Dance games on the Wii. Before you say anything, yes, it is sort of ridiculous, but I have found it does work for me. There is a video I came across that demonstrated ab exercises from a chair. After watching, I realized it was no different from the Just Dance games. So I thought why not play the games and have a little fun while losing weight. I am not claiming this is the best exercise, however, I've found it to be an effective way to exercise. It is something simple that can get anyone on their way to doing better exercises later on. I have recently begun working out again and hope to really stick to it this time. Do I plan to be completely fit? No, I just want to be healthy. Don't we all?

Editor: Esmé Nicolson-Singh (redsbreadslady)

Making Friends

As I mentioned in another post I didn't have many friends when I was younger. I was picked on and made fun of for being in a wheelchair. Kids would avoid me as if I was contagious. How did I overcome this? To be honest, I have no clue. As far as I can tell, I have always been the same. 

I am a geek and a bit of an idiot at times. I have always been a talker and try to make small talk with those I come across. One day it worked and I made some friends.  The friends I made were not the popular or cool kids. But that was okay. They were cool with me and that's all I cared about. I didn't care about fitting in. Let's face it, no matter how hard I try, I won't exactly fit in. I will always stick out like a sore thumb. 

If you are having a hard time making friends remember be to be genuine and honest. Don't be afraid to say that you like or do not like something. Don't say you like a movie/show you know nothing about. Take a genuine interest in others; it's not always about you. For those who have SB like me, if someone comes up and asks why you are in a chair, just answer them. It could be their way of starting a conversation with you. That could be your new best friend.

Editor: Esmé Nicolson-Singh (redsbreadslady)

Relationships

Dating is something I have done once or twice when I was younger. Like many others I have had crushes and that's as far as it went. I have never felt like I couldn't date because of my wheelchair. 

Oddly enough, when asking someone out I have heard the response, "But you are in a wheelchair." So for some, it has been a problem. To be fair, that was back when I was a teenager. Some people have asked me why I don't date someone else with SB. The thing about that is I have given it some thought and it would make things a little bit more difficult. We would need a house that is wide enough for both our chairs to fit, a large car to fit our chairs, and we would run the risk of us both getting sick with the same thing. I am not saying I absolutely wouldn't date someone else with SB, I have just thought of the challenges that may arise. 

As for right now, would I like to be with someone? Sure, but I know I have a lot to work before I can care for a woman. For the time being, I will work on myself and continue to give relationship advice like I do. 

Editor: Esmé Nicolson-Singh (redsbreadslady)

Don't you wish you could walk?

That is a question I get asked quite a bit. Some have even assumed it to be so, saying "I bet you really want to walk". My answer is always the same: "What makes you say that?". 

To be honest I have too much fun being in the chair. A lot of perks come with it. I get pushed to the front of lines at amusement parks, movie theaters, concerts, and other big events. People offer to open doors for me. It's pretty nice. 

Sometimes people will ask "Doesn't it bother you to see others walking around knowing you can't?" Why should it? I never really hear anyone saying how great it is to walk. Most of the time I hear people complaining about walking. So why desire something others complain about? In my opinion,  there is always going to be someone out there who can do something that you can't, such as playing an instrument or singing. It's just something I can't do and I can't change that. Why fuss about it? I still have fun. I swim, go camping, hang out with great friends, and get around when I need to.

My life isn't a complete mess just because I can't walk. There are still things I can do that others can't. My life would be a mess if I focused too much on what I can't do and not on what I can. Now, I don't assume all those with SB feel this way. That is just my viewpoint. But never assume those who are disabled are depressed because of their situation. Some have adapted to their situation and are content because of it.

Editor: Esmé Nicolson-Singh (redsbreadslady)

Childhood to Adulthood

Growing up with Spina Bifida was tough. As a kid I was picked on in school. I didn't have many friends. I didn't have my first real friend until 4th grade. I didn't start going out and doing things unil I was about 15 or 16. Things weren't all bad though. I had my siblings to do stuff with when I was bored. I always got my medical supplies I needed right on time. I had parents who cared for me, things you don't appreciate at a young age. I remember thinking "I can't wait until I am adult, things will be better then." Boy was I wrong. At 18 I tried to look for a job and couldn't find anything. There was a program I was in to help me find work but they were basically a middle man. I was doing everything on my own and they weren't helping much. I had to find a new provider for my medical supplies since the other one was for those under the age of 18. You get so much help as a kid but once you become an adult you get dropped so fast with no idea of what to do. I guess that isn't any different from anyone else's  experience going into adulthood. Then I found out if I work I will be cut off my medical insurance. That wouldn't be any good since I have many doctor appointments and could not afford my bills on my own. Now I live off SSI. Is it annoying? Yes because it feels like a handout. I don't feel like a responsible adult. But it is what it is. I am writing this as a warning for others with SB. Don't make the same mistakes I did. Don't think life will get easier, it won't. Adult life will smack you right in the face. Be involved with others who have SB. I grew up without having anyone around to understand my frustration and now I am barely getting to meet others with SB. To any parents who have a young child with SB remember this, do not make his/her disability your disability treat him/her like you would any other child. Let them set their own limits. To any young kids and teens who have SB I say this, You are disabled, not unable.