October is Spina Bifida Awareness Month. I live with a lot of health challenges, but my main disability is Spina Bifida, which is a neurological neural tube birth defect that occurs when the spinal cord does not close properly during pregnancy. There are many different forms of Spina Bifida, and some people have more health challenges than others because it depends on which part of your spine has been affected, and the further down it is, the more muscles will be affected. Some people with Spina Bifida are able to walk with crutches, while others may be full-time wheelchair users, and some people have it so mild that you don’t even know they have it. I have the most severe form of Spina Bifida, and according to my level, I should be a full-time wheelchair user, but I was able to learn how to walk with crutches. It can be scary for new parents to hear that their child is going to have Spina Bifida because, although there are surgeries that improve the lives of people affected by it and eliminate some challenges, there is no known cure. In this post, I am going to share a few things that tell a new parent or anyone who has been newly diagnosed with Spina Bifida.
Get on the Medicaid waiver as soon as possible- Many people with Spina Bifida have a lot of health challenges and sometimes may need a couple of surgeries to improve or save their lives. Surgeries are expensive, and unless you are filthy rich, most people are not able to afford to pay for them without insurance. Anyone who qualifies can receive Medicaid, but not everyone is on the Medicaid waiver because it can take years to be approved. As soon as you have it, you won’t get kicked off unless you break their rules or you put in writing that you don’t want to be on it anymore. The Medicaid waiver gives you services that a disabled person needs to live, that you wouldn’t normally get on the other branches of Medicaid. Some people are not going to qualify for the Medicaid waiver because you do have to meet their requirements, but if you do qualify, you want to get on that list as soon as possible.
Get your child as much therapy as possible– When I was a child, I needed occupational, physical, and speech therapy because I have a speech delay, and some words are difficult for me to say. Parents sometimes will not get their disabled child the therapies they need because it means accepting that they are different. I have known some people with Spina Bifida who don’t have good use of their legs and could never learn how to walk, but I have also known people who can move their legs who probably could have learned. You are not a bad parent for making your child go to therapy, but you are a good one because you are doing what it takes to make your child as independent as possible. Therapies are sometimes necessary for disabled people because it teaches us how to do everyday tasks in a way that accommodates our disabilities. You can’t do things for your child forever, and you are making their lives harder by not doing what it takes to make them as independent as they possibly can be. Some disabled people will not need therapies, but if you think your child could benefit from them, please take them because no disabled person wants to be completely dependent on non-disabled people if they don’t have to. Your child will probably go to therapy kicking and screaming, but will thank you later in life.
It is okay if you don’t want a stoma- When you have Spina Bifida, it is common for your bladder and bowel muscles to be impacted and not work properly. I have two stoma’s called a vesicostomy and ACE (Antegrade Colonic Enema), that help me manage these issues a little easier without needing assistance. Some people will have a stoma like I do, but not everyone will want one, and that is okay. Parents of disabled children and doctors often will tell you all the good things about having a stoma, but will fail to mention the struggles you will face every day because of it. One of the things that I would tell someone with Spina Bifida considering a stoma is that it will change your life, but it is okay if you don’t want one because there are ways to manage bladder and bowel issues without a stoma. I will always encourage people to get a stoma, but I will never guilt someone into getting one because it’s a very individualized personal choice.
You are not the problem- When you are disabled, sometimes it can feel like you are the problem because non-disabled people are constantly telling you that you need to be fixed. One of the first things that I would tell someone with Spina Bifida or any disability that was struggling with acceptance is that you are not the problem, but it’s the lack of accessibility and ableism. You don’t need to be fixed, and the only thing that needs fixing is the lack of accessibility and ableism.
It is okay to be frustrated with your disability- Non-disabled people often expect disabled people to happy all the time and when we show any kind of frustration people are shocked and tell us to be more positive. When you have a physical disability, everything in life is hard and it okay to be frustrated with your disability because you deal with a lot of things that a non-disabled person will never understand.
When your child is diagnosed with Spina Bifida, it can be scary because there are a lot of unknowns, but you can live well while living with a disability. Disabled people sometimes have to do things in a slightly different way than non-disabled people, and that is okay because there is nothing wrong with being different. There is still no cure for Spina Bifida, but we have made a lot of medical advancements, and there are surgeries that can be done to improve the lives of people affected by it that were not an option when I was born in the nineties. Your child’s disability is not your fault because you can be doing everything right and still have a child with birth defects. There is still so much to learn about Spina Bifida because doctors don’t know everything but you can thrive with the right accommodations. What would you tell someone who was newly diagnosed with Spina Bifida? If you liked this post, please leave a comment below and share it with your friends.
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