Parenting a Disabled Child – 10 Things to Say Instead of It’s Okay
Many days I am thankful that my son is resilient. At 6 years old he has already endured things that no adult will ever face. He’s had 4 surgeries, 1 more coming in 2 months, spent 5 months with an external fixator on, had a spica cast, another cast, months of daily pin care, pin infections, his leg lengthened, hours of therapy…I could go on and on. I would be lying if I said that I wasn’t worried about how medical stress is impacting his life long-term.
My son was given an official diagnosis of Ollier’s Disease a few months ago and I felt a small amount of relief. We now know what beast we’re fighting and what may lie ahead. However, there is no map for dealing with stress. What do I say when my child is in pain? What do I say when my child is aware that he can’t run and play like other kids? I’ve stopped saying “It’s okay.”
This post is done in partnership with Stress Health, an initiative of the Center for Youth Wellness, but the opinions expressed are my own.
I used to sound like a broken record. My child is crying and I’m stroking his head saying “It’s okay, it’s okay.” You know what? It’s not okay. It’s really terrible and pretending that it’s not is doing my child a disservice. After reading more about how toxic stress impacts my child’s health long-term I decided to change my approach. I also realized that I have to limit stressful medical persons around my child and if that means being “that bitch Mom” than I’m happy to be her! After my child’s fixator was placed to address the enchondroma that deformed his leg, a major surgery where they cut the bone, rotated it and placed 5 metal rods that stick out through his skin..I was shocked to see how therapists and nursing staff behaved towards him. His crying was labeled as “behavioral” and he was often treated as if he was being a bad kid. I spoke up, changed therapists as needed and made sure to let others know that my child didn’t need “tough love” from anyone. If you can’t be nice…go home.
I’ve started being very honest. I think that as a parent we are pushed to sugar coat things in order to give our children a magical childhood. However, in our case this isn’t helping. When he cries I no longer say “It’s okay” because it’s not. I now say “Yes, this is terrible” and we move on from there. This is terrible, horrible, painful, not fair but we’re still going to have a good time today. What should we do? Or if the day is shot it’s 100% okay to sulk for awhile, cry and get it all out and then move on.
Here are 10 Things to Say Instead of It’s Okay
- It’s okay to be sad
- This is really hard for you
- I’m here with you
- Tell me about it
- That was really scary, sad, etc.
- I will help you work it out
- That really wasn’t fun
- I’m listening
- It doesn’t feel fair
- I didn’t like that either
The key is to figure out how to move on. If my child is having a bad experience I am happy to identify with his feelings, live in the moment for a period and then to move on. That blood draw was really not fun but what do you want to do next? Let’s do something fun. Maybe we can watch a movie, have lunch somewhere or color a picture. Replace our favorite activities with yours. Maybe we can’t play outside today but we can play Minecraft on the X-Box.
Don’t sugar coat the disability but avoid harshness
I’m honest with my son about his disability. When we are approached in public or he asks questions I tell him the answers. When people ask questions, often in-front of my child, I will address their question with a positive sound to my voice and then move on from the subject. One thing I do not want is a series of pitiful looks from strangers, dwelling on the negatives or making my child feel as though he is an outcast or in need of sympathy. He’s strong, able, capable and amazing. I want him to know that and to feel as though there is nothing hidden from him or that there is anything that he or I should be ashamed of.
Talk to friends and family
This has been really important. The other day my son made the comment that he has “the worst life because of his leg.” We had a relative with us at the time and I saw the tears well up in her eyes. I have let my relatives know that I’m being honest, trying to avoid dwelling on the negatives and turning negative thoughts around like a technique in cognitive psychology to refocus on the good. Yes, some of the things were bad but today is a beautiful day, we’re going to have fun and he’s simply an amazing kid!
What are your thoughts?
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