Last week, I was asked to be a part of an adult discussion panel for the Spina Bifida Education Day in Nashville. I can honestly say that it was an eye-opening experience. In this panel, I heard so many stories from people with Spina Bifida (and their parents) talk about the parents basically just doing things for them just because it’s easier for everyone. It sounds reasonable in theory… until you think about the fact that parents don’t live forever… I don’t mean for this to sound harsh, but that is (unfortunately) the reality.
I find it interesting that when someone is giving money to their child that is addicted to drugs, we can recognize that it’s enabling and it’s dangerous (because it allows the person with the addiction to continue their destructive behavior) but yet… we seem to sometimes overlook the fact that a parent who does everything for their child (when they either CAN do something for themselves and are choosing not to… OR they just do it for them because they are unsure if their child will ever be able to do it) is enabling too. It’s teaching them that they don’t need to try that hard because their mommies or daddies will just do it for them. There’s a difference between empowering and enabling. I’ve had this conversation with my mom before and we both agree that life is a lot better for both of us because I am capable of taking care of myself as an adult and she has the confidence in me to make the right decisions for my life now. I wouldn’t be where I am as an adult without the tools that she HELPED provide for me growing up. Her loosening the reigns a bit helped give me confidence though, not only in myself but also in the direction I wanted for my life… In turn, I am a happier adult with the strong desire to always be independent and successful on many levels. If I was never given the opportunity to try new things though, I might not have discovered the many, many things that I want to do in my lifetime. If I was never given the chance to fall, I might not have had the ability to figure out how to pick myself up when I’ve fallen down (which is inevitable).
As parents, I encourage you to involve your children in their care. Allow them to have a voice. There is a reason that my platform for the pageant this year is the importance of resources. We need to teach our children that their greatest resource for ensuring that they have proper care is themselves and their ability to have a voice. When they lack the experience or don’t quite understand something, it’s okay if they need to ask questions (from their personal care providers or someone else who has actually experienced the same things.) We have to remember that every child (disabled or not) is unique though and what works for some doesn’t necessarily work for others. If you set them up to ask questions for themselves and give them the ability to try to figure out what they think they might need, you’re also setting them up for success in the real world.
Make sure they are involved in their own care and understand the benefits and risks for their positive or negative behavior in regards to their care. Give them some responsibility and opportunities to prove they can do something for themselves. Have an open dialogue about the possible solutions to address an issue that they may be struggling with. You need to let them at least try to do things for themselves. As parents, I’m sure that no one ever WANTS to put seeds of doubt in their child’s minds about their potential, but if they are never given an opportunity to EXPLORE their potential, they may never REACH their full potential…and the world might be missing out on what they can bring to it. I also feel the need to add here that even in 2017, as a society, we still are taken aback when we see people with disabilities being out in the real world. That stigma really NEEDS to change. I feel like I fight that stigma every single time I choose to go out in public. I just want to be seen as a successful person trying to do the things I love to do. I don’t need a medal for my choice to be independent either though. I need for society to start accepting that I DO have the ability to be successful and live a normal life (even when I face certain challenges)… The mindset that we have about people with disabilities starts at home and at a very young age. Let me be clear… I don’t mean for this to “ruffle feathers”. I know that there are good intentions behind wanting to do things for your child. I understand that you don’t want to see them struggle. I understand that it’s hard to let go… No parent ever wants to see their child struggle or potentially fail at something. It will take patience and some trust (and there might be some frustration or tears involved along the way too)… but I promise that over time, it will give you BOTH confidence in the situation in the long run and they will feel empowered.
If you’ve never read my previous blog, Things to NOT Say or Do to a Person in a Wheelchair, be sure to check it out too!
Awesome job! You said everything so well.