Navigating the Unknown with the Help of Adults with Disabilities

When my son was diagnosed, the only thing I lost was a sense of predictability. 

I knew how to parent a neurotypical child. I had a sense of what parenting looked like, the normal steps and challenges. What I didn’t know was how to parent this beautiful child born with disabilities. More than anything, I needed to know how not to mess things up. 

One of the best things I did was to seek out and listen to the voices of adults with disabilities as they described their life pathways. I listened to them talk about their successes and struggles. I took to heart the advice they gave for parents of kids with disabilities. Some people with disabilities are angry with their parents about their childhood experiences. Learning from them has made a major difference in my journey as a parent. 

I want to raise my son to be a fierce self-advocate and to feel comfortable making his opinions known. These adults model the behaviors I want to see in him one day. Sometimes the things they say don’t feel good and make me realize that I’m not always doing things the right way. Who gets to be the expert? In my opinion, I can work on expertise as far as parenting goes, but they are the experts as far as what the actual disabled experience looks and feels like. 

My son is now 9. I’m still learning every single day. I realize that he deserves more than to have his life defined by therapy and correction. I learned that my son’s autistic traits help him see and interact with the world in a way that I can learn from. And now I know that my job is to not only do right by my son but also work to undo barriers that exist for all people with disabilities. 

I wish that right after the doctor gave us my son’s diagnosis, he had given us information on groups for adults who have a disability. For us to see what the future was going to look like and know, it’s not something to be feared—but rather to be celebrated, relished, and enjoyed. 

So, in short—my advice for parents as you navigate through the unknown:  listen to the people who have been there before. More than anything, listen to people with disabilities. Learn about how we can best serve them and, in turn, better serve our kids and the future we want them to have. Connecting with other parents is another great way to learn and share.