–by Lorraine Fuller
It’s a feeling special needs parents know all too well. My most recent experience happened on a cruise ship, on a vacation with extended family. One evening, I couldn’t sleep. My son had gone to a teen party and everyone else had gone to bed early or was off doing something else. I went walking and decided to get a slice of pizza – 24-hour pizza is one of the perks of a cruise! As I was waiting in line, I noticed a table of teens nearby. Another teen walked up.
“So you left too,” they said.
The boy replied, “Yeah, I just couldn’t take it anymore.”
When I heard that, I just knew. Continued conversation between the kids verified my fear. It was my child they were talking about. The word “annoying” kept popping up. My stomach dropped, my heart froze. I went back to my room sad.
It wasn’t the first time. I have gone on all kinds of trips from field trips to vacations. I’ve heard –or overheard– it before. Other special needs parents know this feeling all too well. You see the school name on caller id. Your child talks for weeks about a new bff at school, then you go on social media and see that bff’s mom has posted pictures of a birthday party. You recognize most of your child’s classmates. Your child was not invited. It’s the same feeling you get when you are grocery shopping and see the parent of your child’s classmate and they turn around when they see you. Or when your child begs to sit with the kids his age in church, but you notice that the kids whisper to each other, all the while ignoring your child. Or when you sit awkwardly at ceremonies where other kids get awards, or worse, your child gets an award they did not earn. It happens pretty much any time you see other children interact and realize how different your child is.
Those little things hurt because for us they are reminders that even though we have seen progress, our children have far to go. For some, it’s a reminder that our child may never be “normal.” We fear for their future. We wonder if they will ever have friends, spouses, children, jobs. Will they be able to live alone? Will they end up in jail or homeless? Have I failed as a parent? Is there another therapy, another counselor, a vitamin, a diet, a drug? Something I haven’t tried that would help my child? We want so much for them. We grieve the person they could have been, had trauma not touched their lives.
Those moments hurt. The pain is real. But here is the good news. That pain? It’s a good sign. It means you haven’t given up. It means that you still are holding at least a thread of hope, compassion and love. We are warrior parents. We will keep loving and hoping. It hurts and we will have scars. Find others who understand that pain. Together we are stronger. I was able to share my pain as soon as I got home with trusted friends who understand this journey because they are on it too. That has made the difference for me so I can keep hoping to make a difference for him.