The Never-Ending Scrutiny of a Family Raising a Child with Special Needs

The Never-Ending Scrutiny of a Family Raising a Child with Special NeedsWelcome to Day 11 of the 31 Days of Random Reflections on Raising and Homeschooling a Child with Special Needs. You can find the main page for this series here.

As newbie parents of a child with special needs we were immediately placed under a microscope.

From the moment we received the diagnosis, we were observed intently.

How did we take the news?

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 lives — including the type of housing, our jobs, our choice not to send our child to daycare, and then not to send him to 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.

I understand the intentions, but sometimes it’s just too much.

When we’re placed under a microscope, it makes us doubt our parenting abilities. It make us feel abnormal. It makes us worry about things we didn’t think to worry about until they were pointed out to us.

I don’t want to spend our lives analyzing our son under a microscope. I don’t want my every word to be weighed. I don’t want our family to be a science experiment. 

I’m just tired of the reports, the questions, the judgment, the traffic in and out of our house, 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 are a family just like yours. We laugh and play and enjoy the moments when we’re not reminded that we’re different.

We mostly want privacy and dignity and a sense of normalcy. Our son deserves privacy and dignity and normalcy, too.

Please push aside the microscopes. Take us off the glass slides.

See us for who we really are.

We cannot be dissected.

 

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