Where's Becky?: How Becky Raised Her Family

By Jessica Whitman-Raymond Lucier, Lee Whitman-Raymond, Rob Whitman-Raymond and Becky Whitman-Raymond

Where's Becky? chronicles the family odyssey of raising a special needs child. It is a memoir that describes the development of a family over thirty years, written in four voices: mom, dad, older sister and, intermittently, the star of the show, Becky. Where's Becky? is written with the insight of psychoanalysis, the style of dedicated writers, and the authority of a family determined to not only survive but to flourish.

• Language: English
• Publisher: Newman Springs Publishing, Inc.
• Release date: Jun 5, 2023
• ISBN: 9798887632926

Book preview

Table of Contents

Title

Copyright

Introduction

Infancy

Ambivalence and Rage about a Second Child (Rob)

Waiting for Dad (Jess)

Ambivalence and Rage Part 2 (Rob)

Talking Back to Maleficent (Lee)

All About the Pudding (Jess)

Becky's First Word (Lee)

Let's Split Up into One Group (Lee)

Other People (Rob)

My Sister—Flashback (Lee)

Big Sister's View (JJ)

Moving Day (Rob)

Watch Her! (Lee)

Early Childhood: Looking for Progress

Bells (Lee)

Help Her and Don't Get Fresh! (JJ)

The Nanny (Rob)

Decorating (Lee)

Mondo Condo (Rob)

My Father (JJ)

A Long Overdue Note of Thanks (Lee)

Housekeeping (JJ)

Lynch's (Rob)

Shame and Indulgence (Lee)

In the Car (JJ)

Shabbos (Lee)

JJ (Rob)

Swimming Flashback (Lee)

The Community Center (Lee)

The Drool Era (JJ)

Lilli's Luck (Lee)

V Day (JJ)

Early School Years: Temple, Day Care, and the Town

Climbing a Stairway To… (Lee)

Canwegoforawalk? (JJ)

Inclusion Delusion (Lee)

The Book (Rob)

Canwegoforanotherwalk (Jessica)

Homecoming (JJ)

Walking the Town (Rob)

Mom and Me (JJ)

Hell Is Other People (JJ)

Bad Girls' Dinners (JJ)

About the Temple (Lee)

In the Temple (JJ)

Pasta Night (JJ)

Potty Madness (Rob)

Day Care Take Two (Lee)

To My Little Sister (JJ)

Car Ride (Lee)

Respite (Rob)

My Father II (JJ)

Wisdom Teeth (Lee and Rob, Ages 24 and 25)

A Turning Point: Rob's Apology (Lee)

Later School Years: Wisdom from Music, the Library, and Vacation

Mama Bear (Rob)

Baby Tumbles (Lee)

Lumina (JJ)

Cooking with Ming (Rob)

Things I Hate (JJ)

The Soundtracks (Lee)

Marshalls (JJ)

Weighty Matters (Lee)

Of Books and Beasts (Lee, at Age 6)

The Library Mystery (Lee)

Liberry (JJ)

Forgetting (JJ)

Floor Time (Lee)

Lulls (JJ)

Address, November 2018 (Lee)

Saving Merlin (JJ)

Packing (JJ)

Vermont Family Vacation (Lee)

Montpelier (Lee)

Journeys with JJ (Rob)

Teenage Years: We Need Therapy!

The Toad (Lee)

Spring Cleaning (JJ)

Fun with Dick and Jane (Rob)

Family Therapy with Ruth (Rob)

Installing a Door (Rob)

Wade in the Water (JJ)

Dark Days (Lee)

Never in My Sixteen Years (JJ)

Knock: For Rob (Lee)

Climbing Camel's Hump (Rob)

I Don't Know Whether to Kill You or Kiss You (JJ)

New Year's Eve (Rob)

Happy Birthday, Becky (Lee)

Group Home

The Meeting (Rob)

Where's Becky (Rob)

Becky's Decline: Our Summertime Blues (Lee)

Plummer's Landing (JJ)

Inside (Rob)

Team Becky (JJ)

Perfidy (Lee)

Justin Timberlake (JJ)

The Spirit and the Gifts Are Ours (Lee)

Here's Becky

Dark Mist (Rob)

The End of the First Group Home (Lee)

Becky Goes Too Far (Lee)

Crossing the Abyss (Rob)

Replanting (Rob)

Epilogue (Rob and Lee)

In Becky's Words

About the Authors

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Where's Becky?

How Becky Raised Her Family

Jessica Whitman-Raymond Lucier, Lee Whitman-Raymond, Rob Whitman-Raymond, Becky Whitman-Raymond

Copyright © 2023 Jessica Whitman-Raymond Lucier, Lee Whitman-Raymond, Rob Whitman-Raymond and Becky Whitman-Raymond

All rights reserved

First Edition

NEWMAN SPRINGS PUBLISHING

320 Broad Street

Red Bank, NJ 07701

First originally published by Newman Springs Publishing 2023

ISBN 979-8-88763-291-9 (Paperback)

ISBN 979-8-88763-292-6 (Digital)

Printed in the United States of America

To families—who are all special—everywhere.

Acknowledgments: Our Angels

Our Angels

Following is a partial list of angels who helped Becky in so many ways and who also supported Rob, Jessica, and me. It is partial because we know that many people help us behind the scenes, yet remain nameless… We know you are out there, and we are grateful.

Kate DuBois, special education teacher. She was our first and biggest champion of Becky. She was her camp counselor starting when Becky was nine, and she remains a key part of Becky's well-being and ours.

Bill Eyman and Raymond Beausejour. These two dearest friends have loved Becky as a complete and full human being from the day she was born. They visited her in the psychiatric hospital, provided respite for us, and counseled us when we were despondent.

We want to thank our son-in-law, Joseph Lucier, who has taken Becky into his extraordinary heart. Thank you for seeing the good, the bad, and the ugly and deciding to be part of our—and Becky's—family.

Sophie Willson, artist and special needs expert. We are celebrating our second year with Sophie, who connected with Becky where many others could not and actually persuaded Becky to paint a self-portrait of herself with her imaginary friends ShaNa and Josie. Sophie has been key in helping Becky adjust to a higher level of independence, but most of all, Sophie gets a kick out of Becky, as complicated as she is.

Lynda Moore, area director of Department of Developmental Services. Lynda met with us regularly after we brought Becky home from the first group home, and she has been patient and wise in advising us and helping us to get Becky a new placement. She has just retired, but the gift she gave us is priceless.

Andy Margolin, clinical psychologist. We are grateful to Andy for his understanding of Becky's imaginary companions as coping skills and not symptoms of multiple personality disorder. We so appreciate his going out of his way to teach the staff at her day program, as well as her residential program, how to interact with Becky's band.

The staff at the Advocates agency were invaluable. Eric Millen listened to us and helped us believe in a group home again. Florence Wairimu-Hues exhibited an incredible understanding of people. The staff at her new group home are consistently thoughtful and caring.

Tanya Stonehouse, supervising service coordinator, DDS. Tanya showed us what it looks like when someone gives her all to that role. She is a true advocate of people with special needs.

Dr. Mazmanian, psychiatrist. We are grateful to Dr. Mazmanian for twenty-plus years of guidance and wisdom. We didn't always agree, but you were always there.

Ruth Johnston, family therapist. Thank you for seeing us through nine rocky years between thirteen and 22, for understanding our own struggles and our struggles with Becky, and for helping us to continue to grow as a family. Beloved, kind, and wise, you were as important to our marriage as you were to our children.

Introduction

It has been said that if you can't find the book you need, then you must write it. This book was born out of our family's bafflement over the development and behavior of our youngest daughter and our fruitless search for directions on how to live with the challenges she brought to us individually and collectively.

One of the things we quickly learned about raising Becky was when faced with the embarrassing and difficult situations we found ourselves in with her, we had a choice: we could either fold in some way (withdraw, get enraged, give up) or see the humor and the humanity in the situation. As we became better able to manage the surprises that came our way because of Becky's unusual presentation, we got better at laughing and enjoying the moments when our family actually worked.

This book is a compilation of those moments. It was first conceived when our oldest, Jessica, or JJ as she is known in the book, moved to Britain for several years. Once she was away from her irritating younger sister, she had room to miss her family and to reflect on the memories—painful or funny—that she recalled. She began writing these vignettes to Lee, who loved them and begged for more. Then Jess asked her mom to write some vignettes from her perspective, which Lee was happy to do. Both Lee and Jess are trained writers, and reveled in this project. Eventually, they requested and then required Rob to weigh in from the father's and husband's perspectives.

The project had modest beginnings, but it helped us to cohere as a family. While some incidents were funny, we challenged one another to be honest about our less-than-perfect reactions to Becky as we believe this is a fundamental part of the experience of parenting. We were united in our wish to understand and appreciate Becky, and Becky helped each of us to grow in ways we never would have: to tolerate others' disapproval, to look for the unique gifts in a person, and to have humility about our own levels of understanding.

We began to think that this compilation of vignettes could be an important resource for other parents whose children were only partially diagnosed. Over the years, Becky carried the diagnoses of ADHD, intellectual challenges, mood disorder, bipolar disorder, OCD and, eventually, a form of autism. It wasn't until she was thirty that we actually learned that our daughter has a rare genetic disorder which had recently been identified: FoxP1. It was oddly gratifying to find that, in fact, FoxP1 included all of Becky's previous diagnoses.

We didn't spend a lot of time in our vignettes on the facts of Becky's differences or the many evaluations she went through. Instead, we focused on the day-to-day experiences and the deepening understanding living with Becky has brought us. We hope that other parents—whether of atypical or typical children—will find this a helpful and enjoyable book to read.

Part 1

Infancy

Ambivalence and Rage about a Second Child (Rob

)

(Rob)

The process by which we decided to have a second child was complex and fraught with pain. We had just begun to civilize our four-year-old daughter, Jessica, and the soul-changing, body-mashing, psyche-squishing, and money-squeezing aspects of that process were still quite fresh in my mind. Over the course of those first four years of parenting, I realized that I was mostly faking it. My family of origin was so dysfunctional that I might as well have grown up with wolves. Actually, wolves might have been better since the wolf pack works together.

By the time Jessie hit four, it dawned on me that we were allowed to say no to her. Not surprisingly, my sense that I was a grown-up, and she was actually a child, blossomed. Dawn broke in Marblehead, Massachusetts. Anyway, hitting the reset button felt fraught with danger. I was just starting to run again, we had found a great overnight babysitter, and had reinstituted a monthly weekend getaway. The bank account was making a comeback, and so was our sex life. Why exactly did I want to mess with this?

Lee had her own ambivalence but was remarkably clear about wanting a second child. We had made a bright, beautiful, lively, and creative daughter; why not make another? My wife has strong maternal feelings, probably developed from the babysitting she did as a teenager, because if I came from wolves, she was raised by hyenas. Lee had grown up with an older sister and wanted a sibling for Jess. It all made sense, but I was balking big time. I have the look and pedigree of a desperado, but one of my secrets is that I have a powerful thirst for normalcy, and I was afraid to roll the dice again.

Lee was great about this. She asked me to keep an open mind for a year, and if I was still dead set on stopping with one, that's what we would do. Is there anything more cunning than being fair? I did my best to match her flexibility and, sure enough, began to picture us as a happy four-person family. After all, we had learned so much in those first four years with Jess, and wouldn't it be amazing for her to have a beautiful little sister or brother! What would the baby look like? Why play a pat hand when you could still draw a card and improve it?

I truly did change my decision through this process. I was ready to round the next turn and see what was there. One of my remaining fears was having a special needs child. Lee was only thirty-five, but she had committed to an amniocentesis to allay my fears. I didn't fully realize that my anxiety was rooted in my own childhood. My older sister had serious and disabling mental health issues, so I knew how rough it could be on any family. In my poorly equipped family of origin, it was straight-up traumatic. And yet, remarkably, I was pretty unconscious of how much the past fed my fear about the present. Meanwhile, the amnio came back clear, and the path lay open for Becky.

Waiting for Dad (Jess)

(Jess)

Evening is an eternity

So I make a goal—two bars

Hand over hand I beat down the clock

I want you to arrive midswing, so I don't stop.

By the time you get here

We are both worn out

And I am sitting in the gravel, nursing blisters.

But each day on the monkey bars I fly a little further

And I know joy

My body weightless for a split second on the outside arc

before coming down

to land.

On the fourth day you show up just right

As I skip four bars

Slipping a little but I rally, skim through the air, complete the move

And you clap your own hardened hands, as I leap to the ground

The best part: when you swing me

skyward once more

Ambivalence and Rage Part 2 (Rob)

(Rob)

There were problems early on. Becky's head was so large that Lee had to deliver her by C-section which I, in my attempt to be supportive, witnessed. I do not recommend this to prospective dads. My poor, beautiful wife was stretched out on the operating table, her arms secured away from her body with restraints. I'm an art nut, and all I could think of were those countless pre-Renaissance paintings of crucifixions. Was this an omen of things to come? Becky's Apgars were low, and her pediatrician was quietly worried, but Becky seemed healthy. She was more mellow than Jessie, which felt like a relief. But then the mellowness just kept going, until finally we began to worry that she was too damn mellow.

Lee was concerned about Becky's development before I was. I wouldn't allow myself the possibility…couldn't foresee the trouble ahead. And yet early one evening, I arrived at day care to pick Becky up, and she was still in her highchair. She had lost the battle of keeping her large noble-looking head erect, and it was slumping at an unnatural angle. My stomach lurched, and despite my well-honed defenses, my eyes teared. I caught the eye of one of the kind Baptist ladies who took care of the kids, and she looked sad. In my heart I knew something was wrong with my Becky.

Despite this moment, my denial persisted. We had a developmental pediatrician friend examine Becky, and he assured us she would walk and talk. I must admit, I got enormous relief from his declaration. And of course, in due time, she would go on to walk and talk. But by the time Becky was two years old, she hadn't done either of these crucial things, and we were at Children's Hospital in Boston, seeking more specific answers to the mystery of Becky's delayed development. There we got some answers, the ones I dreaded most. As we walked back to the parking garage, struggling with Becky's flimsy stroller through the freezing winter wind—the kind of wind that is particularly cruel as it funnels through the thin city streets between tall medical buildings—I heard the expert's answers again. Yes, the MRI showed delayed myelination in her brain. No, she would not go to college or drive a car. Yes, she is what we used to call retarded. Lee and I were devastated.

It didn't take long for my rage to ripen. I needed a scapegoat (besides myself), and unfairly, Lee became it. How could this happen to me (again)? Why did she have to push so hard for a second child? How could I have been such an idiot as to agree? Where were my balls? Why didn't I say no? The very fair, beautiful process that we went through coming to a mutual decision about having Becky was forgotten. I had been duped. Worse, I had duped myself. What I couldn't know at the time was that anything, including my destructive raging, felt better than facing the truth about my poor little girl. Anything felt better than my terror, my utter unpreparedness for raising a child with serious special needs. I didn't know if I could handle the day-to-day difficulties, watch my own child struggle, or relive my own childhood pain.

Talking Back to Maleficent (Lee)

(Lee)

Turning in your black-feathered

robe for a white coat, the owl for an otoscope: clever.

We didn't see you at the baby's naming,

entrance in a cloud of black smoke, no, I came to you,

and that's what really fooled me, not figuring

you would have learned over the centuries how to wait.

You knew, after all, I'd come to you at last.

You said you had no curses or spells, but we both knew

you had the best prophecy money could buy.

You said you made a machine that sees into the mind.

I lay my child in that machine and twenty minutes later

you began your chant,

how she will sleep, though her eyes will be open,

how she will grow though her thoughts won't take hold,

how she appears as other children now but will lose

more ground each day.

You said kindly that I should rest too, I must be tired,

and hearing your voice, I nodded, seeing nothing for her,

felt the weariness steal up my spine, my hands loosen

on my child, my neck sagging under the weight of the stone

it carries on its stem. I struggled for words, a retort, some

conviction of my own. But you were already shaking your head:

no cure. You were sorry. No one was sorrier than you.

For days I sat in my china-blue parlor,

my child content to sit beside me with a spoon

for amusement. We sat, we drifted, we slept.

One afternoon I woke to find her staring into my face.

When she saw my eyes open, she smiled. My mind woke with hers.

I scooped her up, took her outside to weed the abandoned

flower beds, while she dug her spoon knowingly into the soil.

So now my eyes are open all night,

watching for nettles climbing around the house.

I'll be planning how to cut them back tomorrow morning.

My daughter is watching too.

All About the Pudding (Jess)

(Jess)

I may be the only person alive with fond memories of hospital food. While I waited to be introduced to my new sister, the midwife gave me bowls of pudding drowning in cool whip. I washed it down with ginger ale in plastic cups with mini ice cubes. Those tiny ice cubes were a delight, a novelty I had only seen before at Passover Seders. It's difficult for a five-year-old to eat and simultaneously hop from one foot to another in impatience, and by the time I was allowed into the room to see my mother, I was in a predictable state of sweaty chocolate stickiness.

Mama was sitting up in bed, her dark curls crushed against a pile of regulation pillows. Sparky. Her special name for me leapt across the too-tidy room, and I stood up taller and puffed out my chest before throwing myself headlong into her arms.

Easy, Tiger, said Dad, holding her hand. He helped me find a good crevice from where I could snuggle her into oblivion without pulling at her stitches.

Mama, Mama, I missed you! Caron says hi. We stayed up all night on the porch, and Sasha is jealous—you look tired. Can I see her? My mother ran her fingers through my hair and smiled at my tale of girlfriend drama. As she nodded, a small shopping cart was steered into the room, and I peeked out from under her shoulder, hoping for more pudding.

Jessie, she said, this is your new sister, Rebecca. My father lifted a small bundle and cradled it to his chest. I watched his face cross with a tenderness bordering on panic, and my mother suddenly gripped my hand. I bounced out of the bed and crept up to Dad, holding out my arms. And then she was in my arms, for the first time, the reddest, tiniest face I had ever seen, eyes squeezed shut.

Becca, I am your sister, I announced to the top of her head, which was a forest of dark, spiky locks. I looked up for approval, but my mother was already whispering with the midwife; my father gave me an absent-minded smile. His glance turned to the bed as the conversation took on an urgent tone, and my mother began to gesticulate. Becca, who I thought fit snugly in my arms, was whisked back to the cart, and I was sent from the room.

Becky's First Word (Lee)

(Lee)

Becky was not a child who said much. Actually, I missed her very first words, not realizing she was trying desperately to communicate with me. She was about eighteen months old, and I was taking her to a new day care, supposedly a better one, in a mother's own home. She swore that no one smoked in that house, though Becky's hair smelled of cigarettes when I went to pick her up. On the third day of the first week, as we turned down the street to the family day care, there was a sort of moan from the back seat. Lost in thought, I jumped at the sound. It was so unlike Becky to make noises.

What is it, honey? I said kindly, never expecting an answer.

Omm, came the reply. How weird, I thought, like a little Buddha chanting. And I thought no more about it.

Six hours later, I returned for pickup, and the day-care mom was standing in the doorway holding the drooping Becky. She was fussy, the day-care mom complained. She had been fussy since I had dropped her off.

Come to me, Peanut, I said, scooping her up. She lay, a dead weight in my arms. I scooched her into the back seat, buckled her backward in, and popped into the front. The drive was only about five minutes from the house, and as we turned down the block, she began again, this time not a moan but quick, staccato beeps: Om! Om! I slapped my forehead, realizing Becky was no Buddha, more of a Judy Garland, looking for comfort no farther than her own backyard. There's no place like Om.

Let's Split Up into One Group (Lee)

(Lee)

The two things Becky learned from the speech therapist were to place her hand on my cheek, look gravely into my eyes while shaking her head, and say: "No, no. You don't