When kids have a disability, people seem to forget that kids hear everything. As a former teacher, I have seen this happen so many times. Teachers talk in front of kids with disabilities as if they don’t understand. They say things in front of these kids that they’d never say in front of other kids. It’s very sad.
In the past 11 years, I’m sure I’ve said things in front of my son that I shouldn’t have. But I do try not to talk about him in front of him. I try not to show him that I’m exhausted from taking care of him. I don’t ever want him to feel like he is a burden. I might be tired, but he is never a burden.
Unfortunately, I have a hang-up with feeding my son. I don’t enjoy it. It takes so much time. And honestly, I guess I’m a little bitter. He’ll need help with feeding for his entire life. The funny thing is, he likes me to feed him!
At dinnertime, he always says, “Your turn,” with his communication device. I think he does it because he knows I don’t like it! I’ve made the huge mistake of saying this in front of him. Not directly to him, but in front of him. And I am so sorry I have.
His school had an awards breakfast the other day at school. When I got there, I asked the aide if he had eaten. She said they waited for me in case I wanted to do it. I said, “Oh no! I hate feeding him. I’d rather clean toilets.” I laughed, but a grandfather looked at me like I had just said the most horrible thing.
I tried to explain myself, but I still felt really bad. At that moment, I vowed to never complain about having to feed my son again. If a stranger was affected by my words, then so was my son. I don’t want him to feel guilty if he’s hungry. I don’t want him to be afraid to tell me he’s hungry. I don’t want him to ever feel like he’s wasting my time.
So try to be careful with your words. They matter. Our kids hear them and understand them loud and clear.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.