Asher and Stacey’s Magnificent Road Trip

By Stacey Cohen-Maitre Ph.D.

Asher and Stacey’s Magnificent Road Trip is a story about a mother and son on a road trip along the Pacific Coast of Southern California. Asher is a nineteen-year-old child/teen/man who is diagnosed with severe cerebral palsy and a visual impairment rendering him nonverbal, wheelchair bound and visually impaired. Stacey is his devoted mother and a neuropsychologist who specializes in the assessment of children with neurodevelopmental disabilities. Along the way, Asher and Stacey experience some unique challenges encompassing physical, mental and spiritual realms, some of which are absolutely ridiculous and almost too hard to believe and some that are truly heart wrenching. Asher and Stacey also cross paths with a variety of characters, some of whom are completely clueless about how to be around someone with disabilities and others who are friendly, kind and share a piece of their bright spirit. Since Stacey is all alone with her son, who is twice her size, just getting Asher onto a hotel bed or showering him without the help of her husband turns into a comedy of errors in a "I Love Lucy" kind of way. Somehow, they each survive this quirky road trip in one piece but their love and understanding for each other evolves to the deepest level that a mother and son could ever aspire to. . . If you read this book, you'll find out!

• Language: English
• Publisher: Balboa Press
• Release date: Feb 1, 2021
• ISBN: 9781982260927

Stacey Cohen-Maitre Ph.D.

Stacey Cohen-Maitre, Ph.D., a pediatric neuropsychologist and mother of four children, did not set out to write a book about the incredible road trip she took with her disabled son, Asher, along the Pacific Coast of Southern California. But after looking through her journal, she realized there were many incredible anecdotes to share and lessons to pass on to other families facing similar challenges and to others who are unsure of how to acknowledge and relate to people with disabilities.

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Copyright © 2021 Stacey Cohen-Maitre, Ph.D.

All rights reserved. No part of this book may be used or reproduced by

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without the written permission of the author except in the case

of brief quotations embodied in critical articles and reviews.

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and the publisher hereby disclaims any responsibility for them.

The author of this book does not dispense medical advice or prescribe the use

of any technique as a form of treatment for physical, emotional, or medical

problems without the advice of a physician, either directly or indirectly. The

intent of the author is only to offer information of a general nature to help

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ISBN: 978-1-9822-6091-0 (sc)

ISBN: 978-1-9822-6092-7 (e)

Balboa Press rev. date: 01/26/2021

That Would Be Enough (from the Broadway Musical Hamilton) Words

and Music by Lin-Manuel Miranda ©2015 5000 Broadway Music (ASCAP)

All Rights Administered by WB Music Corp All Rights Reserved

Used by Permission of Alfred Music

Birdhouse in Your Soul

Words and Music by John Linnell and John Flansburgh

©1991 TMBG Music

All Rights Administered by Warner-Tamberlane Publishing Corp.

All Rights Reserved

Used by Permission of Alfred Music

Front and Back Cover Artwork by Scott Stoddard

Photographs by Kim Le Pham

To Asher

image%20002.jpg

My heart and soul

Contents

Day One:

We’re on Our Way!

Day One:

Love and Elevators

Day One:

Nice People Can Really Make Our Day

Night One:

The Dream

Day Two:

Back to Reality

Day Three:

The Coliseum, Gucci, and Lobsta

On Our Way Home:

Is Life One Big Miracle?

Heaven:

Via the Big Elevator to the Sky and Beyond

Home:

There Is No Place I’d Rather Be

Acknowledgments

Day One:

We’re on Our Way!

Embarking on Our

Mother-Son Road Trip…

What the Heck Am I Doing?

You can’t see until you are ready to see.

—Stacey Cohen-Maitre, Ph.D.

Look at where you are

Look at where you started

The fact that you’re alive is a miracle

Just stay alive, that would be enough

—Lin-Manuel Miranda

A sher and I were backing out of the long cobblestone drive- way of our Spanish-style one-story home in our glaring-in-the-sunlight-white 2011 Chrysler Town and Country adaptive van, which I affectionately called the beloved ice cream truck.

Yessss! We’re finally on our road trip! I excitedly said. This was the road trip that I had been incessantly talking about for the last two or more years.

This was the road trip that had been the dangling carrot to motivate Asher not to yell at the top of his lungs and flail his arms at the most awkward or embarrassing of moments and at all the wrong places—usually nice quiet restaurants, crowded movie theaters (especially when there is a quiet, tender movie moment), doctor’s visits (especially in small and crowded waiting rooms), and of course, the annual parent-teacher conferences for either him or his extremely embarrassed siblings.

This was the road trip that made Mark, my dear husband of twenty-two years and counting, and my twelve-, nine-, and seven-year-old children, Cameron, Selam, and Sosi, envious, thanks to my repeatedly imagining aloud what it would probably be like.

Was it my bragging about staying at luxury five-star hotels with amazing views of the Pacific Ocean?

Was it my self-proclaimed quest for the most delectable chocolate croissant (or almond, ham and cheese, spinach— basically any concoction as long as it’s still buttery and flaky) in all of Southern California (not France, which would be too far)?

Was it my boasting about eating every meal pool- or oceanside, surrounded by crisp, sweet ocean breezes and the enticing smell of the Pacific Ocean that made them think twice (or more) about their travel plans to rural, sweltering Eunice, Louisiana, smack-dab in the middle of summer (at the same time)?

What’s wrong with eating crawfish and crabs, catching frogs, lying around Aunt Mimi and Uncle Glenn’s pool, going kayaking in the lake, and visiting your Paw Paw (grandpa), your auntie and uncle, and cousins? I innocently asked my three other kids. Besides, you’ll be with Daddy!

They each shook their heads unenthusiastically and with apparent disbelief that this road trip was only for Asher and me.

But before we ever backed out of the driveway, I knew that it would be a series of unique adventures and mishaps. I just couldn’t psychically fill in all the blanks of our soon-to-be comedy of errors. But most of all, I did not expect what a truly magnificent mother-son road trip it would end up being.

About a month in advance, I strategically bought some CDs that I thought Asher would enjoy—or tolerate—on our road trip. They were all rather easy to find on eBay albeit in the context of several bidding wars (and I won a couple of them down to the last millisecond!).

The first CD I put in the car’s CD player was Flood by They Might Be Giants. I admit, I hadn’t yet transitioned to using my iPod or iPhone or gotten into streaming. After all, it was 2012! They Might Be Giants is Asher’s favorite musical group, so what better way to start our journey? Their lyrics are unique, joyous, clever, and, at times, absolutely nonsensical. His favorite song, Birdhouse in Your Soul, starts off like this:

I’m your only friend. I’m not your only friend.

But I’m a little glowing friend.

But really I’m not actually your friend.

But I am.

Blue canary in the outlet by the light switch.

Who watches over you?

Make a little birdhouse in your soul.

Not to put too fine a point on it.

Say I’m the only bee in your bonnet.

Make a little birdhouse in your soul.

Just like the music he likes, there are so many more layers of Asher than meets the naked eye.

Yet it all began with Asher’s extremely premature birth.

My water broke while I was five and a half months pregnant. I had a Group B infection that suddenly ruptured my amniotic sac while I was sitting in a psychology class at Pepperdine University, and later that evening, I was rushed to the emergency room at Cedars-Sinai Medical Center in Los Angeles. Unfortunately for Asher and me, all of the ob-gyn residents took turns peering up my vagina to see what a ruptured amniotic sac actually looked like.

Did Asher think this was his invitation to make a grand entrance?

Unfortunately, yes.

Two weeks later, at twenty-seven and a half weeks, Asher was born, hanging on for dear life, dying several times through- out the night due to his immature lung development, and being resuscitated back to life each time (as my ob-gyn physician had informed me).

Once I learned that Asher had been fighting for his life, I jumped out of my hospital bed, ignoring the excruciating pain from my fresh cesarean section, rushed to my tiny baby’s cribside, and pleaded, Asher, live. I will love you any way you are. Please—just live.

Looking back, I was pretty sure that it was Asher’s indomitable spirit that responded to my desperate pleas with, "Did you just say that you’d love me any way I am? Well, then, great! It’s a done deal!"

As we eventually came to learn, Asher had experienced hypoxia (loss of oxygen, which was significant) and ischemia (a grade IV brain hemorrhage—with grade I being the mildest). He required intubation for most of his three months in the PICU and NICU (pediatric and neonatal intensive care units). The excessive loss of oxygen and severity of his intracranial brain hemorrhage ended up causing periventricular leukomalacia, which is what he is now diagnosed with, meaning there are major gaps in the white matter of his brain. White matter is like a highway that sends signals or information to other parts of the brain. His diagnosis of cerebral palsy (CP) and more specifically, spastic quadriplegia, and his other major diagnosis, cortical visual impairment (CVI), renders Asher as nonambulatory and nonverbal as well as legally and function- ally blind. To his credit and divine luck, the Wernicke’s area of Asher’s left temporal lobe appears to be intact, as evidenced by his excellent receptive language skills, which means that he understands virtually everything that is said to him.

We drove in the scorching July heat in the direction of the Fashion Island Mall in Newport Beach. When I peered at Asher in the rearview mirror, which I did often, he was smiling, laughing, and dancing in his wheelchair.

Asher’s happy dance is somewhat spastic as his arms posture upward and in a stiff manner. His fingers contort in ways that I could never replicate. His muscle tone is tense, as if on high alert. He makes excited, non-word sounds like Wooh! This is Asher’s way of saying that all is well with him, his body,