- Why doesn't he talk?
- Why doesn't he walk?
- How does he eat?
- Why is his head tilted back? Why does he have a thing around his neck?
- Why does it sound like he is snoring?
- Why does he have a pillow for his legs?
The one question that I still struggle with to answer is "what's wrong with him?" This questions didn't come up on Jacob's first day of school, but it will come. It often comes in passing. We are on our way to or from school. We are loading Jacob in or out of the car. It happens at the pool, and other public places. I know the question is not coming from a bad place, but it hits me hard in my stomach every time. It has taken me many years to come to a place where I feel I can turn this question into a good conversation where the asking kid can find out a little bit more about our boy.
The answer can not be: Jacob has a mitochondrial disease or starting to rattle off the list of diagnoses Jacob has. What will a child do with that? It sure didn't tell me much the first time I was told Jacob has a mitochondrial disease. What I have learned to say is something along the lines of: this is how Jacob was born. This is how he is. I have learned it is a good opening for more questions, e.g. why isn't he talking and walking. We can then start talking about how Jacob talks, how Jacob moves around. It strikes me every time how curious kids are about how Jacob does the things they do themselves every day. The accompanying parents also start to relax when they notice an actual conversation. Sometimes they even join in.
So as hard as some questions can be, keep them coming! The more people know about Jacob and other kids like him, the less intimidated kids and adults get. It is typically the first sign that we're off to a good school year.
I am ending with some glimpses from Jacob's first day back at school: