“Nothing About Us Without Us” – My Advice for a Parent of Someone with a Disability

I would like to dedicate this blog to all parents of a child with a disability. If I could offer one single piece of advice to parents, I would say one thing.

Teach your child to be an advocate because no matter how much of a loving and strong support system they may have, they are the best advocates for themselves at the end of the day. Think about how you would feel if you woke up one day and someone told you that someone else gets to make all your decisions for that day? They are completely in control, and you have no say whatsoever. You would probably feel upset, disappointed, and confused because if it’s something that is a part of your life, you should be able to have a say, too, right? To be clear, I am not saying that this individual has to make the decision all by themselves, but you should collaborate to make the best decision.

An example of this is when I was younger; I would sit in my IEP meetings along with my family, teachers, and administration (principals, etc.). My family would do this because if a situation happened at school, I would be able to know what my accommodations were, and I would be able to speak up for myself if I wasn’t getting the things I needed. Yes, I did have to get pulled out of class to attend these meetings; however, they did help me to become a stronger advocate for myself and let me have a say about the things I needed to have a successful educational career. Another good thing is if there was an accommodation that was no longer working for me or something that I believed I needed to be successful, I had the chance to speak up. I think it’s important to get your child involved in their IEP meetings at an early age if possible, it’s their life, and they need to know their rights! In my household, the night before the IEP meeting, we would talk about if there were any issues we would like to discuss that way, my family and I would be on the same page, and if I was confused or if anything needed a more straightforward explanation, we would also discuss that as well.

The disability community has a saying, “nothing about us without us!”

Talk to other advocates with the same disability as your child in your area. Remember they were once a child too, and they can give your child and the whole family advice and words of encouragement. We all have hard days; that’s what makes us human beings, but it’s so much better when we have a community of people that knows exactly what you’re going through. Also, it may give you hope for your child’s future seeing other people with disabilities thriving and being successful. Social media is also a great way to connect with others if you cannot connect with anyone locally. While advocating is extremely important, it can also be exhausting, so it’s important to have others you can lean on for support.

To speak from my own experience, I have cerebral palsy and was born with my disability. However, I didn’t have any people with disabilities in my life that I could look up to as mentors for advice or someone who would understand what I was going through. So it took me until my 20s to really become empowered, and that was because I saw other advocates, and I really admired the work that they were doing. Eventually, that inspired me to start my platform, Powerfully Disabled.

To all moms, dads, grandparents, siblings, and family members. We see you; we hear you, and we are always here for you! Please know that you are never alone and have a place here.

2 responses to ““Nothing About Us Without Us” – My Advice for a Parent of Someone with a Disability”

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