Special Needs Parenting: If She Could Tell Us When It Hurts

Jodi Shenal by Jodi Shenal Additional Needs

Jodi Shenal

Jodi Shenal

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 disabil...

Sitting and holding my six year old daughter, we have the most beautiful conversations…without any words.

Although I dream of the day that she will say, “I love you, Mommy”, I can feel that sentiment when she sweetly looks up at me or gently holds my hand.

Admittedly, it is difficult to interpret exactly what she needs, wants or is thinking on motherly intuition alone.

There is another aspect of having a nonverbal child that is far worse than that; and it’s completely heartbreaking and unfair.

She lacks the ability to tell us when she hurts.

One of the absolute worst feelings of helplessness that I’ve encountered as a mother is hearing my daughter cry and not knowing why.

When you don’t know why, you can’t fix it.

If she could tell us when she hurts, it would not be a guessing game every time; a process of elimination to figure out the root cause.

We wouldn’t have to scrutinize each body system, looking her over from head to toe, and trying to reason out the cause of her pain.

The immediate worries always include her chronic GI issues and hip pain.

If we can rule those out, we investigate other sources…could it be an ear infection or a urinary tract infection?

If she could tell us when she hurts, we could save her days of agony caused by a misdiagnosis.

Once she had a foreign object in her eye for a week, unnoticed as she was being treated for a corneal abrasion.

After daily visits to an eye specialist to assess her healing, the tiny, scratching object was finally discovered by her Dad.

We had no idea that something was embedded far up in her eyelid, causing her constant pain.  After it was revealed, it was obvious why healing hadn’t yet begun, despite the rigorous antibiotic treatment.

If she had the ability to tell us, we could have saved her days of unnecessary distress.

If she could tell us when she hurts, we could spare her from suffering seizures that come on from fever, brought on by underlying infections.

After an ER doctor diagnosed her with a viral infection once, she was in unimaginable pain for an entire weekend.

When it didn’t subside and she stopped eating and drinking, we knew something more was wrong.

A trip on Monday morning to her Pediatrician confirmed a severe case of strep throat – a condition that left untreated could cause detrimental complications.

Again, if she had the ability to tell us, we could have rescued her from unrelenting discomfort.

As much as I’d love to hear her sing “The Itsy Bitsy Spider” along with me, or listen to her tell me how her school day was, these are not the reasons that I ache for her to have a voice.

I long for her to have the ability to tell me when something is not right, so that I can do whatever is needed to help her.

We are now embarking on a journey to teach her how to use an AAC (Augmentative and Alternative Communication) device.  We are determined to find a way to give our child a voice.

Even if not through speech, we will strive to facilitate communication, so that she can tell us when she hurts.

We wish to give her the means and the capacity to express the need for help.  Everyone deserves that right.

Even if it’s through her pressing a button to tell us, at least we’d be able to fix it.


Other Articles You Might Enjoy ...

No results found