Spina Bifida

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Hi, my name is gma3. I am guardian to 12yo with spina bifida who uses a wyand arm crutches. he is entering puberty and some days this more than I can handle.


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Physically Disabled, but Not Intellectually Disabled

Think about what you do best. Are you creative, a musician? Do you cook well? Were you a star athlete in high school, and do you still try to stay in shape? Maybe you are very cerebral and well-studied. You are humble enough to know you have weaknesses, but see your strength as your contribution to the world. Something you can fall back on and say you are good at, even in the face of other challenges you may face in life.

Imagine a world in which not only are you not recognized for your strengths, but your strengths are actually seen as weaknesses. Ever since you were a kid, people assumed your strength was a weakness, and you know that there will always be people who make that assumption until the day that you die, no matter how hard you work at your strength or how many accolades you receive.

There is a widespread misconception that most people with physical disabilities also have intellectual disabilities. Statistics show that this is not the case. Common physical disabilities include cerebral palsy, spina bifida, and muscular dystrophy. Around 50-70% of people with cerebral palsy do not have any intellectual or learning disabilities, according to the Cerebral Palsy and Cognitive Impairment Estimates show that around 70% of people with muscular dystrophy do not have any intellectual or learning disabilities, according to the Quest - Article - When Neuromuscular Disease Affects the Bra.... According to the Are there disorders or conditions associated with spina bifida?, 80% of people with spina bifida do not have any intellectual or learning disabilities. These statistics do not include many other forms of physical disability, including, but not limited to, physical disability as a result of chronic illness or injury.

The truth is that not only do most people with physical disabilities not have intellectual disabilities, but many of us have above-average intelligence. Like a blind person with strong hearing or a deaf person who can see well, people with physical disabilities often use their intelligence to compensate for their weaknesses.

As a child, I was not playing on sports teams or dancing in recitals. I was reading, working on homework, and trying to win academic awards. It’s what I knew I could do well, and gosh darn, I was going to excel at it. For most of my academic career, I was not in special education classrooms. I was in Honors classrooms.

This is not to say people with physical disabilities are better than those with intellectual disabilities or that intellectual disability is a valid reason to treat someone poorly. Every person-whether physically disabled, intellectually disabled, or both, deserves to be recognized for their strengths and accommodated for their weaknesses. (According to the www.psychiatry.org/patients-families/intellectual-disability..., 85% of those with intellectual disabilities only have a mild intellectual disability. Also, even those with severe intellectual disabilities have value as human beings.)

This is about the many times I’ve overheard people whisper in shock, “Jen’s actually smart.” This is about people speaking more slowly or over-explaining things to my friends and me. This is about employers making pre-judgements about candidates with visible disabilities. This is about how many accessible recreational activities, social activities, and even church programs for people with disabilities are geared toward those with intellectual disabilities or even children. (At times, the leaders of such programs assume grown adults with physical disabilities need their parent’s permission to participate.)

This is about the strengths of people with physical disabilities being mistaken for our weaknesses.

Quest - Article - When Neuromuscular Disease Affects the Brain | Muscular Dystrophy Association

If you’re the parent of a child with a neuromuscular disease, you’ve probably heard something about learning disabilities, mental retardation or emotional problems that accompany some of the muscular dystrophies and related diseases. But this information is often expressed in vague, general terms, leaving a parent wondering what specifically has gone wrong, whether the child’s school problem is directly related to his neuromuscular disease or not, and — perhaps most important — what can be done to help. Several neuromuscular diseases can involve cognitive problems.
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I Get to Define My Worth: Lessons Learned from My Disability

by Allie Schneider, registration coordinator, NAC

I’m the oldest of three girls and am the only one with a disability. My disability is Spina Bifida but in spite of that, I live on my own, I drive a car, I have a dog named Jack, I absolutely love doting on my nieces and nephews and traveling to new places. I bike, swim, waterski, scuba dive and ride horses.

Living with Spina Bifida has taught me that differences can actually bring humans together, which is why I embrace my uniqueness full force. Whether you have a disability like me or feel “different” for other reasons, I invite you to embrace your uniqueness because you’re the one and only you on the planet. On my journey to accepting myself, exactly as I am, I learned a few valuable lessons.

I am capable

My parents wanted to give me the same opportunities any parent would give their child, so they prioritized independence and experiences for me, just like my siblings. Because of this, I was introduced to the National Ability Center at four years old when I took part in their ski program. Skiing with my family was one of the first times I understood how capable I was. My disability didn’t prevent me from learning a new sport or spending time partaking in a recreational activity with my family. Instead, I could accept and celebrate my journey and who I wanted to become.

Today, I can experience all the outdoor activities I love to do. Thanks to the access and knowledge gained from my time with the National Ability Center, I can waterski with my family or ride a bike with my girlfriends.

No matter what challenge you’re facing, whether it’s mental, physical or emotional, look for activities to participate in. Understanding how capable you are as a person is such an incredible gift.

Acceptance and inclusion matters

There has never been a better time for inclusion with Diversity, Equity, Inclusion and Belonging (DEIB) becoming more understood and more of a priority for organizations like companies and schools. While this is getting better, being seen as different in school, work, and social settings may still be a struggle for some.

In my life there have been times I’ve been worried about being accepted. People often think that because I’m in a wheelchair, I can’t do things others can do. But the reality is, I can do things just like everyone else – it just might take me a little longer or look a little different.

When you’re surrounded by a world that tries to point out your differences, it’s important to have a safe place. As a participant and now an employee at the National Ability Center, I have found a judgment free zone, a place where I’m accepted for who I am, no matter what. We all need a place where it’s okay to be different and to be who you are.

Further, acceptance in action is critical. Accommodations for people with disabilities is essential for those companies who prioritize diversity and inclusion. It’s an outward representation of understanding and acknowledgement that while I may not know what your challenge is like, I’m going to support you through it.

There’s power in letting go

We all face challenges in life, but it’s truly about how you motivate yourself to overcome those challenges. It may be impactful, but it doesn’t have to control your life.

As a kid you don’t really know or understand that you’re different because the other kids don’t really notice it either, that’s the great thing about being a kid! But as a teenager that’s when I learned this lesson. Spina Bifida may be part of my journey but it doesn’t define who I am or what I can accomplish, growing up that was a powerful moment of growth for me. Even today as an adult I still sometimes have to remind myself of this lesson.

You don’t have to let whatever challenge you’re going through define the type of person you are. It’s okay to be different and to deem yourself worthy and capable, exactly as you are.

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Picture Description: Leave words of Encouragement Below.Trust that the eyes that need to read it, will. #SpinaBifida #Hydrocephalus #Positivity

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Having a hard time finding the good in life. I have an amazing family, with four kids and a wife at 35. The last three years have been the hardest. Was working 60 plus hours a week until 2020 I hit a wall. I was at 215 pounds 5’11”. Then the fatigue and weakness came. Along with debilitating anxiety and depression. Halfway through 2021 I was diagnosed with sarcoidoses. As well as some lower back problems from undiagnosed spina bifida. Had a full fusion of my lower lumbar.

I cannot work anywhere close to what I used to. I feel like a failure most days. Barely keeping up with my kids. I’ve been detained 5 separate weeks for suicidal ideation and tendencies. Horrible experiences… sitting in a room full of kids, drug addicts, and convicts. Listening to depressing stories that makes my stuff feel not so bad.

I’m at 150 pounds now, trouble eating, sleeping, drinking. Body aches everywhere mostly around my joints. Still dropping weight. I don’t use drugs or alcohol anymore nor do I use tobacco. Sober 4 years from alcohol. Recently tried and gave up THC. (Doctor recommended) now I have no appetite at all. Most days I wish I could sleep and not wake. #MajorDepressiveDisorder #Anxiety #SpinaBifida #Sarcoidosis

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Spina Bifida and Quality of Life

I am a 38-year-old African American wife and adult with Spina Bifida. I have nearly 20 years’ experience working in the medical field, specifically within the laboratory and research spectrum. I am currently a research project manager who is focused on the betterment of those with Spina Bifida at the University of Pittsburgh and for nearly 10 years I have been working on various research projects concerning the adult and pediatric community with SB. My research is a collaborative effort with various physicians and other clinics that are developing methods to reduce the suffering and debilitating results of the disorder. As of last year, we have developed our Adult Spina Bifida Peer Navigation Program that offers virtual group sessions every 2nd and 4th week of the month. The program is an effort to share lifestyles and techniques among the community with the guidance of our mentors who have both spina bifida and medical care experience. This atmosphere is patient focused with guidance by patients like them. It provides our clients with a judgment free zone where they can socialize while receiving advice or support specific to their needs.

As a person with SB, I understand and hope to bring attention and resources to the quality of life needs within our community.

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