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.
Learn more about educational options and opportunities to support your child’s future in Education and Schools.
Many parents have questions about what to do when they are presented with an Individualized Education Program (IEP) that they believe is not appropriate for their child.
Categories: Education & Schools