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Communication Breakdown

Communication Breakdown

Can you imagine not having the ability to express out loud when you’re hurt, hungry, scared or frustrated?

What if you had a need, but were without the capacity for verbal speech?

That’s the stark reality that my nonverbal child faces every single day.

As her mother, it is a harsh and heartbreaking fact. If I had only one wish, it would be that she be granted to ability to speak.

When she has a stomach ache or an earache, I wish she could tell me. When something has frightened or upset her, I wish she could tell me.

When she’s thirsty, I wish she could tell me. When she’s in need of a diaper change, I wish she could tell me.

When I wonder how her day was at school, and if everyone was kind to her, how desperately I wish she could tell me.

Communication is a basic human right. Every single individual on the planet deserves to have a voice.

Fundamentally, being unable to convey needs and wants, or to independently make a choice, is an injustice.

For my child who was not given a clear, effective method of communication, it’s my job to find a way for her.

It has become a critical mission, with continuous trial and error, to unearth the approach best suited for her. I’m determined to give her a voice.

There are so many types of Augmentative and Alternative Communication (AAC) devices available today.

Researching and demonstrating various apps can make your head spin. It’s frustrating and parents want quick results.

Typically, that’s not the way it plays out. We must be patient. We must try and try again. We find that repetition is key.

Those of us without a degree in Speech-Language Pathology may struggle, learning the ins and outs of these programs.

We need a thorough understanding before we can effectively teach them to our children.

We read. We practice. We customize. We model.

In addition to the devices and apps, there are techniques combining gestures, eye gaze, signing and pointing to symbols or pictures.

When fine motor skills aren’t well developed, it’s even more daunting to help our children with limited or no speech abilities express themselves. It’s HARD work.

There are times when we feel defeated and crushed because none of it is clear-cut. At times, progress seems out of reach and nearly impossible.

However, when we finally see a glimmer of understanding; a spark of comprehension, the results are priceless.

It’s hard to describe the excitement and relief that I feel when my daughter shakes her head for “no.”

She’s nine years old and I LOVE when she is sassy with her head shaking! It’s breathtaking.

I am over the moon every time she touches a photograph of her cup when I ask her if she wants “food or drink.”

When I present her communication app, and ask her which book she’d like to read, my heart soars when she touches the picture of her most beloved story.

Sometimes, she chooses by touching the screen with her tiny nose. That is BEAUTIFUL communication.

Our communication journey will be a long, winding road.

With the assistance of wonderful educators placed along our path, and with our steadfast dedication, we will get there.

The possibilities are endless and we’ll never, ever give up.

My daughter will have a voice…it may not ever be a verbal one, but it will be loud and mighty!

Firefly Blog

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

Jodi Shenal

Meet Our Blogger

I'm a stay-at-home mom with two amazing children. My son is on the Autism spectrum and my daughter has a rare genetic disorder and multiple disabilities. I am passionate about advocating for my children, writing about our experiences, and raising awareness for other families in our shoes. Our family lives for the little things and we've learned to appreciate all the beauty that surrounds us

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