One of the hardest questions to answer when your child’s needs are not visible to others is the inevitable “Why are you here?” It comes in many forms and can be as simple as unspoken judgment from a family member who doesn’t “believe in” sensory processing disorder, ADHD, or autism. It can take the form of a Facebook post accusing parents of pursuing diagnoses and therapies when, in fact, “all kids do that.” For us that day, though, it came in the form of the owner of a local facility who had hosted a free sensory event walking up to me and boldly asking, “Why are you here?”
I often describe our life to others as being caught in a no man’s land not knowing where we belong. The road to diagnosis has been long and inconclusive. My child has moments where he can pull himself together and function in a way that appears neurotypical; He has many more moments – hours and days, actually – where he is simply too dysregulated to function as one would expect for his age.
When he’s too frustrated with his poor motor planning to dress himself despite being almost 6.
When bedtime takes 4 hours because the sensory overwhelm that accumulated over the course of the day was just too much.
When playing with Lego Duplos is too frustrating and the sound of the kitchen lights is intolerable and the smells that no one else notices are overwhelming and the background chatter from his siblings is more than he can handle and it all results in an emotional breakdown that lasts hours instead of the minutes that parents of neurotypical children may be used to.
There is no clear diagnosis, but what is clear, if you are the parent, is that this is not typical.
But what about the times he CAN hold it together, especially in front of teachers and therapists?
What about the fact that “he doesn’t look like there’s anything wrong?”
Are our struggles not real because they can’t always be seen in the eyes of bystanders?
Where do we belong if no one knows, sees, or understands?
Does spending 95% of my waking hours helping my child avoid dysregulation not count as “special needs”?
Or do we need to be card-carrying members of a club with a well-known diagnosis?
Should we wear special shirts or pass out cards delineating all of his challenges?
Is this what it would take for others to be kind and accepting of his differences that may not be immediately visible?
Or would people still feel bold enough to walk up to us and ask, “Why are you here?”
Sensory House Adventures 