I have always know since I was young that I had asthma. Some of my earliest childhood memories are of my frequent stays in the pediatrics ward of the hospital under an oxygen tent. My parents spoke to me about the limitations it could cause when I over exerted myself, but always encouraged me to never stop participating because of it. I grew up never feeling limited, but always aware of my body and learned to listen to it, and respected the fact when I needed to slow down.
This is why I talk to my daughter about Cerebral Palsy…
When Olivia began school, my husband and I were adamant she be included in every aspect of the experience. We were fortunate to have a support team that shared our beliefs. Obviously we knew she wouldn’t be running through the schoolyard, playing chase and climbing up and down the monkey bars; but this didn’t mean she couldn’t participate in the experience of a fun filled afternoon with her fellow classmates. We provided bubbles, small kites, wind toys, etc. Anything we could find that Olivia could use and share in the fun with a friend or two.
Olivia will be five this October. When I speak to her about how Cerebral Palsy affects her body, I do it in an age appropriate way, so she can understand. For instance, one time I got her doll from the toy box. It was a soft bodied doll with cute little yarn braids and a floppy hat. I showed her the dolls legs. I said, “Do you see how soft doll’s legs are? If I stand her up, she falls down. If I put this book behind her, she stands up.” Olivia smiled. She really watched my explanation and focused on doll’s legs. I then proceeded to tell her, “Olivia, you’re legs are “soft” or not as strong too. If Mommy stands you up, you fall right?” Olivia smiled in recognition of a response. “So this is why you stand really great in your standing frame! Your frame is like doll’s book.” I tell her, “this is because you have something called Cerebral Palsy. Your muscles don’t work the way they should.”
Being able to speak to our daughter about her limitations absolves the elephant in the room. Olivia is a smart kid. She knows she is different in some ways, but because of our little conversations she is more confident and doesn’t let it get her down. We encourage her to participate and to put herself out there. She is a great kid with a wonderful personality! By understanding what it is that affects her, she can become more comfortable in her own skin and continue to spread awareness in her own way. Will this be the answer for everyone in the same situation? No….maybe not, but for our family it was essential. We would not allow Cerebral Palsy to be a dirty word. We would not allow Olivia’s diagnosis to become taboo. Cerebral Palsy is a part of her. It does not define who she is or who she will grow to become.