Posted Jan 12, 2015 by Jacquie Robison
~ contents of your fridge
~ your dinner menu
~ a little advance planning (don’t worry … not too much!)
Sofia’s formal diagnosis is spastic diplegia, which in brief means it impacts her legs. There is some involvement in her left hand, and they suppose this could be because her right hand is clearly her dominant one, so she was compensating for her weak legs by stabilizing herself with her left hand. And yes, ‘they suppose’ is a synonym for ‘we guess’. There are lots of guesses around this condition, which is really broad and has a range of possible impacts, from gross motor to fine motor, to possible feeding and speech issues. It was a lot to absorb. What we did know was that Sofia would benefit from a combination of physical therapy (to improve gross motor skills) and occupational therapy (to improve fine motor skills). We met with different folks and started weekly sessions with experts. I would take notes and look at the equipment and wonder how I could accomplish some of these same benefits at home.
I found myself watching her play with blocks and thinking about ways to get her left hand more involved in turning blocks over and stacking them. I would look at the way she was kneeling on the floor and think “I have to change the position of her foot so she is better supporting her weight…so that she activates the dorsiflexion and builds on it.” This was a day and a half after learning specifically what ‘dorsiflexion‘ was from her physical therapist.
I just wanted the best for her. I wanted to be the best mom I could be for her. I wanted what every new parent wants and give my child every opportunity for her best development. Rationally, I knew this didn’t mean obsessing over her physical therapy — and her occupational therapy — all the time. I definitely knew that wouldn’t be healthy for her, for me, or my husband. So, he and I sat down and talked about what this was going to look like. You know what? It looked remarkably the same as before she was diagnosed. We knew we wanted our daughter to have as many — no, ALL — of the experiences that we had always dreamed for her. But, we weren’t naive. After her diagnosis and based on the reading and research we had done, we realized this was going to be a long road. We were preparing for a marathon, not a sprint. That was the reality. As much as we liked the idea of some quick hill work and weights to make it up and over this hill, we understood that this was going to be about grinding it out with Sofia every day. It was going to be a lot of work. But, she was only a year and a half when she was diagnosed. She was a child. Really, practically still a baby. Her only job was to have fun. So, we resolved to challenge ourselves to find as many ways as we could to make her home-based therapy fun. It would still be work, but the trick was not making it feel like work.
This ended up being a terrific shift in perspective and helped me to look at things in a different light. We had always made Friday evening our ‘Family Dinner Night’ and the menu was homemade pizza. Sauce from scratch. Gooey cheese and fresh basil.
I looked at this celebration through the new lens, and saw lots of ways for Sofia to be involved. It took a little planning, but that’s true of any craft or activity with a little one. Now, instead of feeling like I had to get the sauce ready and the pizza prepped while she was occupied, I included her in each of the steps. Her little hands held the rolling pin and helped prepare the dough. There was no rush and no pressure….we just took our time. She used a little brush (of course it’s pink…her favorite color…) to apply olive oil to the edge for crispness after baking. I scooped some sauce into a small bowl and handed her a spoon to spread it all over the dough. She sprinkled the cheese on (usually with a taste test here and there) and then topped it with fresh basil. You get the idea. We switched out and switched up the recipes each week, and it was always a delight. Sofia loved to be a part of making dinner and you could see how happy she was that she had made dinner.