As a mom new to disability, I had a steep learning curve. I had to learn about my daughter’s diagnosis, medications, how to navigate insurance, our rights and responsibilities, and more. Much, much more!
After conquering Carissa’s medical needs and insurance, I began to focus on her education. Sadly, this was something I had neglected. I was so hyper-focused on keeping her alive and safe that her educational needs fell by the wayside.
I started attending workshops and conferences. I read all I could get my hands on. I started networking with other moms who shared similar visions for their children.
As I peeled the onion, so to speak, I realized I had learned quite a bit but had much more to learn. My “ah-ha” moment came when I realized the most game-changing knowledge lay in the realm of things unknown. I was excited and curious. I wanted to learn more. I was empowered!
I pulled my family together. We created a vision for Carissa’s future and a roadmap to move her toward that vision. Here were some of those important steps:
This was the beginning of our journey down the road less traveled. Would I do it again? Yes! The only thing I would change is when I learned the value of knowing what I did not know.
Twenty-two years later, Carissa lives life as she defines it. She lives where and with whom she wants. She has a part-time job and is paid a living wage. She spends her free time with friends doing the things she enjoys. She is a disability rights advocate. She is a public speaker. She controls her budget with support. She hires and fires the people who support her. And if you ask her, Carissa will tell you she has a good life!
I cringe at the thought of what Carissa’s life would be like today had I not learned what I didn’t know then and continue to learn what I don’t know still.
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Categories: Education & Schools