How I Became An Advocate for my Son

My son has had health issues since birth, but it wasn’t until later that we found out about his disability. I specifically remember him being a sick newborn in the hospital and having to advocate for him.

At that moment, it all clicked.

I felt like a mother, and I knew I had to stand up for him.

Since that day, I’ve never stopped being his advocate. Several months later, he wasn’t hitting some of his milestones set out by the CDC. I’m so thankful that I had met an Early Intervention team at a baby fair when I was pregnant. They told me what to look for, made sure I knew an evaluation was free, and let me know they’re always available from birth to three years old.How I Became An Advocate for my Son Omaha Mom

When I noticed he wasn’t hitting his milestones, I printed the list, checked the boxes, and wrote down my concerns. Then I brought it with me to my son’s next check-up. His doctor wasn’t overly concerned but agreed with me that calling early intervention wouldn’t be a bad idea.

It ended up being one of the best decisions I’ve ever made for my son and for myself as a mother.

Early Intervention is through your local school district. You get a caseworker who helps your family. They come to your home to evaluate what services/therapies your child qualifies for. If they do qualify for services, they will get you set up to receive services in your home.

Early Intervention was an amazing experience for our family.

I had many doctors and other professionals tell me how much of a positive difference it made by getting my son into that program early. My son qualified for speech therapy, occupational therapy, and physical therapy.

It was very family-based. They showed us how we could help him while going about our daily life. They even helped us access other programs, had events, got us in touch with adaptive swimming lessons, gave us books, and set up playdates!

At first, I was nervous about having strangers in my home. Quickly, though, we began to look forward to their visits. After my son aged out of that early intervention, they helped us transfer to a local headstart program within our school district. We went from having an IFSP (Individualized Family Service Plan) to an IEP (Individualized Education Plan).

This was a whole new world for me. I had been homeschooled for the entirety of my educational years. The school system was all new to me and overwhelming. Add the complexities of dealing with disability rights in school, and I was a parent advocate who was lost.

Thankfully, someone referred me to PTI Nebraska.

PTI Nebraska (Parent Training and Information) is a statewide resource for families of children with disabilities and special health care needs. Every state has a program similar to this. I had no idea this existed and I wish I had known sooner.

They advocate from birth to adulthood. I’ve spent hours talking to the advocates. They’ve helped me know what my rights are, what’s the difference between a 504 and an IEP, what to expect out of an IEP meeting, what services might be available to our family, and sometimes just a listening ear when there are frustrations at the school. Now I’m a lot more confident advocating for my son in the school system.

As a disabled mom to a disabled child, I’m always learning something new and trying to improve how I advocate. I have my deficits and weaknesses as we all do.

One of my strengths, though, is reaching out for help.

Whether that be finding someone that knows more than I do to help educate me or finding a program that helps benefit my son and our family. These are just two of the programs we’ve utilized that have helped my son and me. It’s my hope that more families learn about them and are able to benefit from their services.

For more information:

Nebraska Early Development Network

PTI Nebraska

Alexie was born and raised in South Omaha. She's lived there throughout her adult years as well. Alexie is a single parent and her time is mostly spent working from home and taking care of her son, Nikola. She is passionate about Accessibility for people with various Disabilities, including her son and herself. On weekends you'll find her at all of the Farmer's Markets. As a self proclaimed Geek and Nerd her free time is most often used reading, researching her special interests, or binging the latest superhero/sci-fi shows.