Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 14, diagnosed with Prader-Willi Syndrome and Weston 17, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.




Friday, April 3, 2015

Right Turn, Clyde

As a special needs parent my job is mostly about the driving.

I drive and drive and drive.

From one specialist appointment to another.

I spend more time behind the wheel than an over-the-road truck driver. I believe I have logged more miles in my lifetime than Richard Petty himself.

This week it was all about driving Weston.

He had two physical therapy sessions, two vocational assessment visits and an appointment with the dentist. Not to mention, of course, the many trips back and forth to school.

Through it all, my faithful son serves as a cautious copilot, instructing me where to turn, cautioning me about approaching vehicles, and signaling to others when it was safe to continue.

In fact the two of us look a lot like this.

 
So I guess I should not have been surprised when my truck decided it did not want to turn left. We are driving to Weston's vocational assessment when suddenly I have trouble steering the vehicle.

"Uh oh," I say gritting my teeth and struggling to pull the wheel around.

"What is it Mom, what's the matter?" Weston asks alarmingly.

"I don't know, I am having trouble turning left," I answer, trying to sound somewhat calm. We are half way to our destination with another 5 miles or so to go and inside I am starting to freak.

"Is everything alright?" Weston asks with concern.

"It's fine," I say unconvincingly, as a long line of panic-stricken thought begins to enter my brain. Did I pay my AAA bill? I wonder to myself, remembering the stray red and white envelope sitting unopened on our kitchen counter.

Should I stop now or continue on?
Will it get better or worse?
Are we going to get in an accident?
Should I reschedule this appointment?
Will it hurt Weston and his chances of finding an appropriate setting for next year?
What should I do? I ask quietly to myself.

I drive cautiously on.

What do I do? What do I do? What do I do? I repeat to myself, feeling overwhelmingly out-of-control and bracing myself for yet another wild ride on the Lisa Train, only this time it really is a wild ride.


"Mom, maybe we should stop?" Weston suggests.

"Here Weston, take my phone," I tell him.

"Look at the driving directions and see if we can get there without making any left hand turns."

"Good idea," he says.

He taps the phone with his usual device-proficiency and scrolls down to the map.

"It looks like we need to make only one left turn up ahead and the rest are all rights!" he says with enthusiasm.

"Excellent," I say relieved and somewhat hopeful that we may just make it to the test site all in one piece.

"Take a left in point one miles," the phone app instructs in an annoyingly confident tone and I resist an urge to toss it out the open window.

"Please let me make it, please let me make it....I beg quietly to myself.

"Hold on to your hat Weston," I say and pull on the wheel with all of my strength.

The truck turns sluggishly to the left but makes the turn safely.

"You did it!" Weston shouts with glee.

"Phew," I say and release the deep breath I had been holding behind my teeth. I thank the powers-that-be for answering my frantic plea.

A few right turns later, we arrive safely at our destination.

Weston jumps out of the truck but before he closes the door to leave, he turns and says,

"Mom please drive safely to the repair shop and remember....."

"Right turn, Clyde!"

We both laugh till we cry.

I am happy to report, I made it to the auto repair shop safely....all right-hand turns of course.

$750 later with a new power steering box and pump, I have assumed my usual place behind the wheel.

Perhaps you recognize me?