I write fairly often about my son's struggles with Sensory Processing Disorder. About his eating issues. About the way his motor skills delay affects him on the playground. About his problems concentrating in a noisy environment at school. I write about how these issues affect me as a parent, about my own struggle to smooth a path through this world for a child with a developmental delay.
I worry, sometimes, about writing publicly about these things, because I don't want to embarrass my child by revealing too much about his personal struggles. I don't want to unreasonably skew the way others who have never met him in person might see him. I don't want to label him permanently as a person with a problem. I want the world to see him as a child with a disorder, not as a disorder attached to a child.
So I worry. And I censor myself, sometimes. And sometimes I freeze up altogether, unsure of how much to write.
I think carefully about what I do write. I weigh the costs and benefits of telling a story about my child, carefully, before I push the publish button. If I write this story, will it help me think through a problem? If I share it, will that help me find advice from others who may have had similar experiences — advice that may help me help my son? Will it help raise awareness about sensory disorders? Will it help another parent of a child with sensory issues feel a little less utterly alone?
I like to think that by writing publicly about my family's experiences with my son's sensory problems, I am helping to create a future world in which those problems will be better understood. I hope that one day, the acronym SPD will be as familiar and commonly understood as ADHD, and that the label will carry as little mystery as an ADHD label, and no stigma.
I hope that ten years from now, when my son explains to someone why trying new foods unsettles him and the sound of a vacuum bothers him and climbing a staircase makes him nervous (and also why he can memorize the drum track of a song after hearing it just a few times, and why he never fails to notice a friend's new haircut, and why he can tell you what precisely seasonings went into a sauce, and why he can tell from across the house when cookies in an oven are finished baking, just by the slight shift in their smell) that instead of "You have a sensory disorder? What on earth is that?" he will hear "You have a sensory disorder? Oh, that makes sense!"
And I hope, too, that one day, when my son is grown, he will understand that is why I wrote about him. To pave his way.