By Jessica Berndt
During my 8-week ultrasound with our first baby, Freddy, we received the news that he was at-risk of having Down syndrome. I fought the idea for the duration of my pregnancy and held out hope that the doctors were wrong. In a world where being different is teased and unaccepted, my emotions ran rampant during the entire pregnancy. None of the doctors or nurses shared positive things about Down syndrome, instead I was reminded of all the ways in which he would be different. It wasn’t until we met Freddy’s cardiologist at 20 weeks that we received a little glimpse of hope. She described his congenital heart defects, gave us time to process, and encouraged us that things would be okay. A week before Freddy was born, I was finally given a packet of information about our local Down syndrome association, but by that point, I was so wrapped up in my emotions that I refused to look at the packet and accept this possibility.
We received the genetic test results while we were in the NICU with Freddy. A doctor simply told us, “yep, it’s Down syndrome.” My husband and I sobbed for a few minutes, letting all the “what ifs” cloud our minds. Then I remember walking over to Freddy’s bed, looking at his sweet sleepy smile, and saying, “Why are we crying? He is perfect.” My husband and I both laughed, feeling the heaviness of the inner conflict release, it finally felt like we could breathe.
After that, we went straight into advocate mode. I whipped out the folder the doctor had given me from our local Down syndrome association, and I contacted every single person in there. How I wish I would have received that file sooner and reached out to the amazing women I am still friends with today. They validated my emotions, guided me in the right direction, and offered support I had yet to receive.
As a clinical and school psychologist, I have had lots of interactions with people with disabilities. I have advocated for hundreds of children and adults to receive the inclusion, respect, and care they deserve. Even so, when it came to receiving my own child’s diagnosis, I became consumed by my emotions and the stereotypes the world places on people with disabilities. It wasn’t until I saw Freddy’s face that I was able to accept and move forward. His birth lit a fire in me and a passion for sharing our experience and helping other families cope.
For so long, I fought that idea of having a family that is different, and now I look for ways to celebrate our differences each and every day. With each challenge he has faced, Freddy has proven that he is strong, brave, and persistent. He inspires me to be truly inclusive, connect with others openly, spread awareness, and fight for the things I believe in. He helps me find the beauty in every situation, and I am so proud to be his mom.
I created Parenting Differences to engage with other families that are on a similar path, let them know they are not alone, fuel them with the skills and knowledge they need to advocate fiercely, but most of all, empower parents of children with disabilities to take control of their own mental health. The ups and downs of parenting a child with a disability can feel overwhelming, but with community and the right skills anything is possible.
Jessica Berndt is a licensed clinical & school psychologist in Ohio, who owns a private practice as well as works in schools. She's the mom to two little boys, one of whom happens to have Down syndrome. You can learn more about Jessica's mission on Instagram @parenting.differences.