I'm thankful my daughter is coming into her own, with a typical streak of defiance - SarahBarnes
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I’m thankful my daughter is coming into her own, with a typical streak of defiance

Things change when you become a MOASNC (Mother of a Special Needs Child). Many people you would never have met, for example, become close friends. Total strangers will go out of the way to do nice things. Your child sometimes gets free toys just because she has disabilities. Free stuff is cool.

The beautiful moments — and there have been many for me — are often chronicled in this column, but it’s the personality of Meredith that is unfolding so richly these days. I’m learning that under all that therapy to help her learn to walk and talk is the spirit of a very typical little 5-year-old girl, sometimes a willful one.

I knew I was pushing my luck when I pulled into the post office parking lot the other day with Meredith and her 17-month-old sister Caroline in tow. It’s the third rule in the MOASNC handbook: “Leave Children at Home.”

But there I was in the 96-degree heat dragging a stroller out of the backseat for Caroline. There’s a routine here. Caroline sits in the stroller and Meredith holds onto the handles and pushes. I stand behind Meredith with my hands on top of hers guiding the stroller. The three of us look something like a lopsided sandwich in motion.

We have to do it this way because Meredith can’t walk unless she’s holding onto something. Conversely, Caroline just wants to flee. So you see how opposites here make a simple errand a complete ordeal. But let me continue.

This system usually works quite well unless Meredith is in a mood where she refuses to stand and drops to her knees on the hot asphalt just to punish me. This is one of those days.

“Meredith,” I plead, “please stand up.” She breaks into heaving sobs and starts yelling “Sissy, sissy.” So, there in the boiling sun, Meredith’s knees are frying as I try to figure out what it is about her sister that is bothering her. Caroline’s big blue eyes are starting to question this conversation and she begins her wiggling to get out of the stroller.

I tell Meredith we will resume this conversation inside. Once indoors, we paused the stroller sandwich for a moment to take in the air conditioning. Then the “sissy, sissy, sissy” starts again.

As we wait in line, Meredith’s pitch gets louder and louder and Caroline wiggles more and more, testing the stroller restraint to its limits. Something has to be done. I can feel the stares. I’m getting stressed. To everyone in line, it looks like Meredith is having a temper tantrum. They don’t know the frustration she has in not being able to express herself in words will come out in random shrieks instead.

I get down on my knees and look at Meredith just inches from her face. Using sign language, I tell her to “wait.” For some reason, she will usually take notice when I’m signing even though her hearing is just fine. This also is a way of letting people around me know that Meredith has to communicate on a special level. I learned it in lab during my MOASNC training.

When I finally get to my place at the front of the line, I am holding Caroline because the stroller strap has become a tourniquet of sorts and any blood she has left in her legs has drained to her purplish feet.

Meredith meanwhile has taken off with an empty stroller. Her newfound freedom away from Mom is being expressed in very loud squeaks and giggles all over the post office. I try to keep an eye on her, but mainly I’m just relieved she isn’t crying anymore. When she got close to the exit, I yell to her: “Meredith, wait! Mama is not ready yet. Please wait.” Ignoring me, she presses on.

I am brimming with annoyance, but before I can call out again, I suddenly realize this is an experience not at all covered in MOASNC 101. This is a real-life, willful 5-year-old girl thing. Motor and cognitive disabilities aside, Meredith is being completely typical.

I smile at her and then look again at the people in line. Clearly most think I have lost the upper hand with my daughter. They’ll never know what a beautiful thing that is.


Sarah Barnes writes occasionally for the Austin American-Statesman about the joys and challenges of raising a child with special needs.

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Sarah Barnes
mydifferentroad@gmail.com
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