Touching the Water

We arrived at the beach and were immediately surrounded by sharks.

I took it as a bad omen.

The decorating scheme of our beachside condo threatened to ruin my hopes of playing with my son in the ocean again.

Just a reminder before heading onto the beach....Thanks.

Just a reminder before heading onto the beach….Thanks.

This boy once loved to swim in the ocean waves. But, for more than a year and a half, he’s been gripped by a new fear of the water. He can’t describe his hesitation, but he’s dropped a few clues that his anxiety might be about “sharks coming in the water.” No amount of coaxing in the last few trips to the beach has helped him face his fear. Last year, on this same beach, he refused to get his feet wet.

His anxiety didn’t keep him from being ecstatic to be at the beach and to spend time with his grandparents. The first few days of our trip, my kid walked and ran and played in the sand. But he still steered clear of the water.

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Although he never visibly reacted to the shark paintings adorning the walls, we could hear him occasionally muttering “shark” and “ocean” and “swimming.”

One morning early in the week, he pulled up a video on his Youtube app – the one showing the “Jaws” attraction at Universal Studios.

Nope. I thought. He’s never going back in the water.

But by the middle of the week, he surprised us all.

First, he ventured out to walk along the wet part of the beach.

Then, his toes just touched the water.

I tried to keep my enthusiasm subdued, play it cool. We stood back and whispered to each other – look at him! he’s doing it! way to go, kid!

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Whenever he was near the water, he wouldn’t let us get too close. He needed to do this without interference.

We watched from a short distance as each day as he gradually reintroduced himself to his old friend.

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We threw a ball in the water, and he allowed the waves to play catch with him – a game he will rarely sustain that long with another person.

By week’s end, my boy wasn’t swimming, but he was splashing in the water up to his knees.

Grinning with glee and loving it.

I am so proud of my kid for overcoming his fear and reconnecting with a favorite joy.

All on his own. In his own time.

Take that, sharks.

Jumping for Joy (literal interpretation)

Jumping for Joy (literal interpretation)


Jiritsu [自立]. Independence. Self-reliance. Autonomy.

Standing in the small foyer of a restaurant in a rural area north of Nagasaki, Japan, I am trying not to cry. I am thousands of miles and many days away from my son, working hard to be a “real” person, a professional, to hold it together until I can get home. The little book in my hand threatens to crumble my resolve. Here, in a most unexpected place, my child speaks to me.


When the opportunity arose to take this business trip to Japan, my little boy was nine years old, in the midst of a rough year at school and a full-time schedule of therapies designed to coax him out of silence and shore up his abilities to learn and do things on his own. How could I go? Twelve days? Overseas?

Yet, how could I not? My work as a researcher for an author writing a book about the atomic bombing of Nagasaki had been providing a part-time reprieve from my duties as a special needs mom, allowing me the precious gift of digging in to a project that was completely un-autism. The opportunity to accompany my boss to meet the survivors of the bombing, support her final interviews with them, and complete research at a few sites in this historic city? We had to make this happen.

Besides, there is nothing like talking to people who lived through the horror of a nuclear bombing to put one’s own little problems into perspective.

After sharing a social story of “Mom Goes to Japan” that explained what my son could expect when I disappeared for two weeks, I left my fabulous husband at the helm while I went off across the ocean. I cried when the two of them dropped me at the airport, torn between guilt and excitement, anxiety and anticipation.


The trip has been a whirlwind so far – we crammed our schedule morning-to-night to take full advantage of our time. Since I do not speak or read Japanese, my brain is in overload just trying to decipher what is going on around me at any given moment. I don’t have much chance to worry and wonder how my little boy is coping while his best translator is gone. I try to keep in touch with home through Skype, but the time difference makes it difficult for my husband and me to catch each other.

My determined focus on my work was almost derailed yesterday when we visited an elementary school. We stood in the back of the auditorium as the students filed in for their monthly “Peace Education” assembly, during which they learn about the atomic bombing on their city in 1945, and pledge to work for peace. As the kids sat down on the floor in straight rows, I saw him: a boy a bit younger than my own, walking in next to his aide, with all the mannerisms that I’ve come to know so well. As he settled on the floor, practically lying in his aide’s lap, he had a mischievous grin that reminded me of someone.

Then, today one of our interviewees invited us to lunch at this restaurant where her niece works. As we drove up the winding road outside of the city, taking in the luscious green hills, terraced rice paddies, and small farm plots, our host revealed (and my boss translated to me) that the restaurant is connected to a day school for young adults with disabilities.

I am curious to browse in the gift shop as our table is prepared. Many of the goods on display were made by those enrolled here or by their family members. The money raised from the sale of these trinkets (like the fan-shaped coasters made out of summer kimono material that found their way home with me) supports the school.

On one of the tables, I spot a small hardcover book (with English on the cover!). I open it up to a random page, and my heart leaps in my chest:

Dont Worry NEWMom,

Don’t worry

You’re always worrying about

my future

I am worried about your anxiety

I turn back to the first page. What is this? I have to place my hand on the table to steady myself.


Gaze at my eyes

Understand me

For I ain’t got the words

to express myself

Oh, oh, oh. And, then:

Feel for me

Though the silence is long

and the words are sparse

Please sense my yearnings

Without much ado

This little book is going to do me in. I have happened upon a collection of brief poetic letters in English and Japanese from a boy to his mom, recounting shared memories, imploring patience, expressing fears and joys, and attesting to the unmatched bond between a mother and her special child.

I close the book and set it down. I can’t cry here. Don’t cry here. I concentrate on anything else on the table except this little book that is saying too much with its sparse words.

My boss comes to my shoulder to see what I am reading, and is concerned by the look on my face. “Are you OK? What is it?”

I pick up the book, cradling it almost, and whisper: “This… is my kid. This is him.”

I flip through the pages more slowly, thinking the hardest shock is behind me.  It’s not. Partway through the book, the rhythm shifts from an all-too-familiar child seeking comfort to that child offering sweet, lyrical gifts of reassurance to his mother.


No moreFeel Free NEW061

You don’t have to be strong

You don’t have to protect

You don’t have to try hard


Feel free

Live your life

These tiny words surge through me, pushing against all the guilt of being away from my child. The guilt of trying to do something else, be someone else for a time, besides a mother, an advocate, a caretaker.  This simple poem holds out a sliver of hope – the promise that my son may someday grasp why I do all that I do for him; the vision that, as I urge him toward his own independence, he might, one day, openly welcome the same for me; the possibility that he might somehow come to understand how very much I love him.


What’s independence?

Little by little

Slow and steady

I can achieve it

I’m almost independent,

aren’t I?

That’s fun

I can even quarrel with you now

I think of the boy with his aide at the school the day before, and I think about his mother. We share a connection and an understanding that would need little translation. I imagine that we both hope our sons might someday be able to express these words. The world feels small, indeed.

I turn to the back page and see that the author of this book is the mother of two. In an effort to better understand her son, born with a disability in 1979, she began to write. This book is one of the results.

I am unsure if her son wrote the poems or if she did, but their collective words simultaneously break my heart and lift my spirits.

My boss murmurs some consoling words and tells me our table is ready. We laugh as I try to pull myself together. With effort, I return the book to the table temporarily. I will not leave here without it.


Our hosts insist that my boss and I take chairs next to the windows to enjoy the beautiful scenery. From my vantage point, the L-shaped building affords me a clear view into what appears to be the students’ workshop. In between the bits of conversation my boss translates for me, and amusing our new friends by taking photos of the amazing, exotic (to me) food we are served in this seven-course “lunch” of traditional Japanese dishes, my eyes keep returning to the window to catch glimpses of a few young men at their workbenches.

I wonder which of them is like my son.

I wonder if my boy would ever find contentment in this kind of place.

I wonder if their mothers ever stop worrying about them.


Thank You NEW063Thank you

For believing in me

Thank you


Domo arigato gozaimasu

Thank you,

to the day school we visited and especially to the Nagasaki mom

who brought me closer to my son at a time when I was so far away.


The poems quoted and illustrations appear in: Itoh, Kuniko. Feel Me: Part I. Translated by Minako and Wesley Salvadorai-Tuda. Warney Company Translation Dept. Illustrated by Yumiko Ishihara. Nagasaki: Warney Company, 2005.

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A revised version of this essay appeared in Pentimento magazine, December 2013.

Parents Like Us

For some unknown reason, I received the January issue of Parents magazine in the mail the other day. At first, it just made me laugh because I could imagine the reaction of my fellow special needs parents to these headlines:  

Parents Mag

* Milestones Ahead! What to Expect This Year – Oh. Yes. We love these charts, don’t we?

* Help Your Baby Sleep Better – Sleep? What’s that like?

* Organize Your Home! – A 30-day calendar (with a house party on Day 31!) that assumes that my clutter can be conquered and my closets streamlined in just one month. This exercise must be intended for the stay-at-home parent whose kids are enrolled in boarding school.

* Mealtime Tips for Picky Eaters – Hahahahahahahaha. Read the full post »

Joyful Noise

At first glance, 2014 doesn’t look so good.

My “Joy jar” is not even half full.

Inspired by Facebook and Pinterest friends at this time last year, I set aside this empty jar to be filled throughout the year with slips of paper on which would be recorded the year’s most joyful moments. At the end of the year, we were to launch ourselves positively into the New Year by reading and celebrating these saved excerpts of Joy from 2014.

Joy Jar 1

I probably shouldn’t have chosen such a hugely tall jar.

I know it looks like I was being overly optimistic about the amount of Joy the past year would bring. Read the full post »


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