The Value of Knowing What You Don’t Know

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:

• We invested in our own learning.
• Instead of focusing on what she could not do, we started building on her strengths.
• We took calculated risks allowing her to succeed and fail with grace. Life lessons are very powerful.
• We revised her entire IEP, including where she received her special education services. She moved from a segregated classroom in a portable building across town to a general education classroom at her neighborhood school.
• We enrolled her in school and community activities she was interested in. We no longer asked could she participate. Instead, we decided which supports were needed for her to participate.

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.