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What denial looks like in a special needs parent

What denial looks like in a special needs parent

Who is so scared that she believes in every stigma that has been subconsciously placed inside her mind over two decades of life?

Stigma that exists ironically because of the fear many have of disabilities and differences?

It’s calling the agency providing services for your child, in your own home, and telling them this:

“I’m sorry, I no longer require services for my child anymore.”

I actually did this.

I called up the providers and told them to stop coming, stop helping my child.

She had been receiving physical therapy and learned to walk at 20 months old, finally!

A teacher was coming every week to work with her on some delays in fine and gross motor areas.

But I insisted. No more help, please. She will be okay.

I still remember the therapist’s long pause and response: “Are you sure? I don’t think we know everything yet.

These services could really help her progress even more.”

“No, that’s okay,” I said, staring out my apartment window in my little kitchen, pulling down the aluminum blinds with my finger, “I think she’ll be okay, really.”

The parent has the final say, so my word was bond. The services went away.

If I only knew how much I would need them just a year later, and how difficult they would be to get back.

Denial. Declaring something to be untrue.

Problem was, I didn’t even know what the truth was yet concerning my child, so I was declaring that the fears that still sat tucked away in my brain to be untrue.

I thought that if I declared them so, if I contradicted what others told me, that those fears would amount to nothing.

She turned two, continued improving in speech and other areas, but those little behaviors were still there.

Arm flapping, head spinning, and minimal eye contact and smiling.

Nope, they will go away, I said every time, denying the truth.

She was still scared of many things, like stepping off a curb, or climbing a ladder at the park. She put everything in her mouth.

No big deal, I rationalized. Denial had paralyzed my mind.

When she was 27 months old, I discovered I was pregnant with my second child. In preparation for his birth, I tried potty training her myself.

Total disaster and even more things emerged during that time that caused concern.

Nope, nothing to worry about, I told myself. She will learn when she is ready.

Her baby brother was born with his own set of health challenges—a blood disorder called mastocytosis.

Suddenly I was shuffling between denial of my first child and a high level of care for my second.

Things were falling apart. Denial can only last for so long.

You start to unravel, like a tiny thread on a sweater, being pulled away slowly and steadily.

Eventually, you reach your breaking point…

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Kera Washburn

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Kera is a married, stay at home mother of three unique children each born with a special challenge and each gifted with red hair.

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