My friend Nicola (who blogs about her experience with cerebral palsy) recently wrote a post about what she would say to parents whose children have cerebral palsy. I thought I would do the same based on my own perspective.
Treat your child as you would any other child.
I believe it’s a disservice to both disabled children and their families for the child to be treated as though he or she is special. I grew up believing that anything and everything could – and should – be modified for me. It was socially alienating for me and now I feel that I am constantly ‘playing catch up’ to try to be a socially appropriate and acceptable ‘normal person.’
Impose consequences for disrespect, rudeness, and immaturity.
When I was little, people used my disability to ‘explain away’ my rudeness and immaturity. This was problematic in two ways: I didn’t realize when I was being rude or inappropriate and I was able to get away with things that other people weren’t. I learned that I could use my disability to my advantage to get out of things I didn’t want to do. I was never allowed to fail at anything and I never took any hard knocks, so I didn’t have any coping mechanisms or survival strategies.
Teach your child that his or her cerebral palsy is not a problem.
I grew up believing that I had a problem and that I, by default, was a problem. I still struggle with this every single day; I still believe that I am a problem. My first boyfriend had a stutter but he told me he’d never considered it a problem. It was only a problem because other people perceived it to be a problem. Teach your child that his or her disability is not a problem and encourage your child to use his or her body to the very best of its ability.
Keep your child as physically active as possible.
Reinforce the notion that physical health is an important and lifelong practice. Have your child in team sports or some form of exercise as early as possible and have them make this into a part of their everyday lives. It will help both his or her physicality and emotional well being. I wish I had learned much earlier in life that being regularly physically active makes you happier, less stress-reactive, and more confident.
Let your child be independent.
Teach your child to be as self-sufficient and independent as possible. I grew up constantly relying on others for support and validation; I was never independent because I never needed to be. Someone always stepped in – literally and metaphorically – and cleaned up any mess. Out of my own volition, I forced myself to be more independent. It has made me more resourceful, strong, mature, and responsible. I am much more confident now than I was when I was more dependent (and when I knew that people would look after me and step in).
Your child is not definable by his or her disability.
I have a friend who is disabled who has never let it comprise a huge part of his identity. He pays rent and bills, has a proper job, has an education, and is independent. He has never victimized himself, he doesn’t use his disability to get out of things he doesn’t like, and he doesn’t want other people to feel sorry for him. He just ‘gets on with it.’ I wish I had been raised this way and I wish that I hadn’t let my disability consume so much of my identity. Originally, disability was my identity. Now, ‘overcoming my disability’ is my identity. I wish it weren’t so, and I wish I hadn’t placed myself in this limbo of being forever stuck between ‘disabled’ and ‘not.’
Release the safety net.