When my oldest son was diagnosed with Cerebral Palsy at a young age, I was paralyzed with fear. I didn’t know if I could be the mom Ryan needed. He was so young and I was so new to parenthood. I didn’t know whom to talk to, who could help.
The one thing I knew for sure is that there was so much to learn.
In the days before the Internet and social media, information wasn’t easy to come by. I found a support group of parents who had kids with different types of challenges. That group of supportive moms was my introduction to the world of children with disabilities.
I started going to conferences, workshops, and any informational classes I could find. The more I learned, the more confidence I felt. I was learning how to advocate for Ryan.
Before long, other parents started calling me, asking me to go to their child’s IEP meetings or help them find resources for their kids. Even though I had a degree in education, I thought of myself as “just a parent.”
I attended meetings when I could and started presenting at small workshops for other parents. It was surprising that others considered me to be an expert. I was just teaching them what I had been taught by other parents.
I became president of my local Arc in Colorado (now called Association for Community Living) and vice-president at the state level. While all my work was volunteer, I found that everything I learned helped me become a better advocate for Ryan and then for my daughter, Katelyn.
With a move to Texas, I was offered a job working with families of children with disabilities. It was amazing to actually get paid for doing such rewarding work. This included advocating for children, attending ARD meetings, and providing training for parents and opportunities for parents to support other parents. Every new experience taught me better ways to advocate for kids.
Learning to be an advocate has taken a lifetime. Advocating for Ryan gave me the opportunity to assist other children and to find a career that continues to challenge me every day.
Most people hear the term PTSD and think of soldiers returning from war. But having a child in the NICU/PICU can result into PTSD, too. Here are some common symptoms of PTSD and suggestions for getting help.
After my daughter passed away, I also lost my own identity and purpose in life. How do you go forward from there?
To advocate for our children, we must be informed and active in the decision-making processes—from local to state to national concerns. There are tools to assist in finding helpful resources.