What Having a Son With Special Needs Taught Me About Fear

When I was pregnant with my first and only child, I remember saying to my husband, “I don’t know what I’ll do if we have child with special needs. It has to be so hard, and I just don’t know if I could do it.” Little did I know my beautiful son I was carrying inside me had a duplicated chromosome that would eventually create a number of challenges for him as well as for his father and me. The thing I feared most was about to become a reality for us, and I had no idea how getting a diagnosis would later change who I was and who I wanted to be.

I gave birth to my beautiful son, Carson, on a snowy Sunday morning in January of 2001. It was an easy delivery, and other than his having a severe case of jaundice, I had no reason to be concerned for his health. Everything seemed perfect. Carson didn’t seem hungry enough right away, but doctors and nurses dismissed my concerns and said he would eat when he was ready — newborns don’t starve themselves. So I assumed he just needed some time to work up an appetite.

Carson was alert for a newborn like no child I had ever seen before. He stared at his father and looked deep into his eyes. He looked around and took everything in. Every noise or ray of light caught his attention. Everyone was in awe over his bright eyes and ability to track stimulation from the beginning.

But deep inside, my husband and I knew something was different about our son. He screamed nonstop, he wouldn’t eat and he seemed so interested in his environment that he wouldn’t or couldn’t shut down to sleep. It was exhausting and scary, but the worst part was that no one believed us. We were told we were nervous first-time parents and that we we needed to relax.

Finally, after several months of stress, someone noticed what we were talking about. Someone actually believed us! Our son was diagnosed with dysphasia and deemed a “failure to thrive.” This sparked almost two years of testing and therapy which eventually led to a diagnosis of autism. The one thing I said I didn’t think I could handle was a child with special needs, and there I was with a child with autism — and I was so relieved and happy to get that diagnosis. Finally someone had believed us and taken the time to listen and pay attention to our son’s behavior. It took almost three years to get to that point. Three years of pure exhaustion and trying to prove to friends, doctors and coworkers that we weren’t crazy, nervous parents. Finally we had answers, and we could move forward with therapies and services to help our son.

Carson is 14 years old now, and he’s doing wonderfully. Things aren’t easy for him, but he works hard and does his best. It took us 12 years to find a geneticist who was able to tie all Carson’s struggles together and figure out that he has Dup15q11.2, a duplicated chromosome. Carson may never drive or receive a high school diploma, but I believe he could have a relationship and live somewhat independently with help and supervision.

My son is my hero because he changed me. He has helped me get over my fears of people with disabilities. I didn’t even know I had that fear until I became a mother, but looking back to that moment I said I didn’t know what I would do says so much about where I was at that point in life. I didn’t have faith in my abilities as a mother or confidence in myself. I tried to ignore people with disabilities because I was afraid of saying or doing the wrong things and hurting their feelings. It had nothing to do with them, their needs or their feelings — it was my own insecurities that made me feel like I couldn’t take care of someone who had special needs.

But doesn’t everyone have “special needs?” Aren’t each person’s needs unique? Doesn’t everyone require a certain kind of attention and emotional support? I look back to that person I once was and ask myself what made me so insecure that I felt I couldn’t do it. Why did I fear someone in a wheelchair or who couldn’t speak? I now know my own self-confidence was to blame. I was afraid of experiencing anything I didn’t understand or have experience with, because what if I screwed it up? I was afraid to go places I hadn’t been or talk with people I hadn’t met, because what if I said the wrong thing? This had nothing to do with my ability to parent a child with special needs — it had to do with my fear of change. I was afraid people would see me as different if my child was different.

Funnily enough, I’ve found it’s not uncommon to have this fear. It’s how you deal with your fears that sets you apart. My son helped me to see myself from a different angle. I was no longer a spectator — I was living in the world of a special needs child. I see the fear in others’ eyes when he says something off the wall and they don’t know how to respond. I see how people stare when he is behaving in a way they aren’t used to. I was that person once. I stared and rolled my eyes but was to afraid to offer help or engage with the person, because what if it made me uncomfortable?

Let me offer advice to anyone who lives with fear. Fear holds you back from experiencing new and potentially wonderful things. Fear can prevent you from becoming the person you want to be. Fear can prevent you from meeting fantastic people or visiting places you’ve never seen. Fear stands in the way of saying, “I can.”

Fear is natural, but it’s not always necessary.

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