I had an idea to keep our daughter focused on specific new tasks her physical therapist felt she was ready to try. One of the overwhelming things about cerebral palsy is that there are so many seemingly ‘easy’ tasks that take a lot of energy and effort for the child to work out. CP is neurological — there’s a disconnect between the area in the brain that should be sending the message to the muscle — like a short circuit. She’s actually creating new pathways to accomplish things. Wiring and firing all the time. It’s got to be exhausting.

She’s a very visual learner, and I thought if we put it down on paper, she could see that it was manageable, and she could also feel accomplishment. So, I put together a skills chart with six different functions to help her ‘see’ the specific new tasks. I just stuck it in a clear freezer size plastic bag so  that at the end of each day we could put a little heart on the areas she had worked on. We’d count up the hearts and she got a penny for each heart. She’d put those pennies in a tiny little bank we got just for this purpose, and when the bank was full, she would get to choose an adventure — pizza date, ice cream sundae party, going to a movie — whatever she wanted.

As we were reviewing the chart together, she looked at me and said, ‘This is easy for other kids. How come it isn’t easy for me?”

I stopped cold. This was important. I knew that. What I said next would either support us as we continued down this path together or it would make everything after this point very, very hard.

I looked her in the eye and simply said, “We’re all working on something, honey. This is what you’re working on.”

She thought about that and replied, “OK, let’s try.” P-A-U-S-E. Then she smiled sweetly and asked “Mom, what are you working on?”

I laughed and said, “Well, that’s a long list and we’ll talk about it one day. For now, let’s focus on this adventure.”

We’re all working on something.