Crucial Connection by Rachel Nemhauser

The first time I went out to dinner with a group of parents who have children with disabilities I was actually surprised to notice the moms were smiling and laughing.

After three draining, difficult, traumatizing years of raising Nate I had assumed my days of silliness, fun and friendship were officially over. I imagined my future held only sad, stressful, desperate get-togethers with other sad, stressed out, desperate parents like me. Seeing that I might smile and laugh with friends again - that I could laugh at all with a child with a disability at home – pretty much changed everything.

For three years Nate’s delays had slowly revealed themselves, one after another, like ants from a hill. First he was late to crawl, then to walk, then to talk. His play skills were behind. His adaptive skills weren’t emerging. His behavior and social interactions were challenging. There was no name for what he had and no explanation for his delays so I spent three denial-filled years trying desperately to believe he would catch up. I was not the parent of a child with special needs, I told myself daily. I’m not meant to be this. I don’t want to do this. And since I was determined to not be the parent of a special needs child, it was obvious I didn’t need the support that actual special needs moms needed. I didn’t need to connect with other moms and I didn’t need help because this was temporary.

Except it wasn’t temporary, and Nate never caught up. After three years I finally came to some level of acceptance and admitted to myself that I needed support. Thanks to an invitation from a friend, I decided to attend a Mom’s Night Out with a group of moms of children with disabilities. Expecting a prolonged venting-session complete with whining, tears and miserable desperation, I was surprised to find a group of moms who, like me, were excited to be out to dinner with other grownups! They were cracking jokes, bragging about their kids, and giving advice about behavior problems. They were updating each other on life events, medical procedures and marriage woes. They were recommending good doctors and dentists, and even hairdressers familiar with working with our extra-wiggly kids.

That night I shared the most exciting news in my world: At three years old Nate had recently said “mama” for the first time. To a group of moms of typical kids this is happy news, if not a little surprising. To this group, it was time to celebrate. They understood what “mama” means when you’ve waited three years to hear it. They cheered me on and celebrated Nate’s accomplishments as only they could. In short, they “got it” and it felt so good.

From then on connecting with other parents became crucial for me. I needed to check in regularly with this army of other parents. They were part of my new life and were where I turned to find the support, insight, perspective, acceptance and humor that I couldn’t always get from the rest of the world. I needed to learn from those more experienced than me, and eventually even pass that support on to others.

Today I no longer resent thinking of myself as a parent of a child with a disability. I don’t know if I was meant to do this, but I do know that I can do it. And I’m grateful for those laughing moms from so many years ago who showed me with their smiles that my future would still be joyful and full of laughter.

Rachel is the coordinator of Parent to Parent at the Arc of King County. Parent to Parent helps connect parents to resources, information, and most importantly, other parents. She can be reached at Rnemhauser@arcofkingcounty.org or 206-829-7046 for more information.