Step 1. Open my eyes.
Step 2. Sit up.
Step 3. Swing my legs off the bed.
Step 4. Stand up.
What if just understanding how to get up in the morning took someone leading us through each of those steps? What if we couldn’t understand how to eat, go to the bathroom, put on our shoes, or other mundane tasks unless someone constantly walked us through each minute step?
But most of us can and that is the power of sequencing in our brain. You and I can break large or small activities down into the steps needed to accomplish them without even thinking. Even very young children can quickly learn and perform the steps needed for different tasks.
But in most children with MPS and similar conditions, their brains function differently. The damage that doctors and parents do not totally understand affects the way in which our children process information. They often have extreme difficulty with sequencing – attributable to many factors, many of which get worse over time as the disease progresses:
All of these factors come into play with Case. Even though the clinical trial has improved his cognitive and other skills, he still struggles with all of these issues.
Take, for example, putting on shoes. We have been working on this task for over a year. A year. He works on it at school. He works on it in occupational therapy. We work on it at home.
He still has not mastered it consistently.
So I did what I should have done many moons ago. I created a sequencing chart that I hope will help him stay focused and remember the steps involved in this task. I laminated it and put it on the wall at the bottom of the steps where we sit every morning to work on these steps. I’m sending one to school as well. I post it below in case it is helpful in any way to another family struggling with issues like these.
I’ll keep you updated about *when* (not if) he finally masters the shoe battle.
For more information on understanding sequencing/graphic charting and examples of charts to help your child with sequencing daily tasks, visit:
Examples of blank chart structures can also be found many places online, including: