As newbie parents of a disabled child, we were immediately placed under a microscope.
From the moment we received the diagnosis, we were observed intently.
How would we cope with the diagnosis?
Would we be able to handle it long-term?
Did we have adequate support?
Did we need additional support?
Would we fall apart?
This was quickly accompanied by the never-ending notes taken about our son—who was under a microscope of his own.
Every ounce of weight-gain was recorded.
Every ounce of milk taken was recorded.
Every diaper change.
Every bowel movement.
Every itch and scratch and blink and facial expression.
It was all recorded.
Then, it progressed to questionnaires, interviews, assessments, and reports. Our private live —including the type of housing, our jobs, our choice not to send our child to daycare, and then, not to send him to a conventional school—it was all recorded.
Every comment we made was recorded.
When I cried as I made my way to the elevator after a difficult appointment, I didn’t get away with it. When I thought I was alone, I was questioned about it the following week.
When I teared up with joy from seeing another boy at the rehabilitation center progress to a new piece of equipment, I was confronted about my “feelings” by a therapist.
We went from being a simple, humble family to suddenly filling binders with notes—about us.
While I do appreciate the intentions and the need for this kind of watchful eye, sometimes it’s just too much.
When we’re placed under a microscope, it makes us doubt our parenting abilities. It makes us feel abnormal. It makes us worry about things we didn’t think to worry about.
I don’t want to spend my life analyzing my son under a microscope.
I don’t want my every word to be weighed. I don’t want us to be a science experiment.
Sometimes, I’m just tired of the reports, the questions, the judgment, the traffic in and out of our home, and the meetings made behind closed doors—without us even present.
I don’t want to be on the other side of the magnifying glass as though we are smaller than everyone else.
Because, we’re not small. The reports don’t tell the whole story.
We laugh and play and enjoy life’s moments.
We mostly want privacy and dignity and a sense of normalcy.
My son deserves privacy and dignity and normalcy, too.
Please push aside the microscopes. Take us off the glass slides. See us for who we are.
We cannot be dissected.