Somehow

Somehow I could not have predicted the feelings of giddy freedom owed to a Cliff-less weekend. But there they were, unmistakable and unfamiliar as I drove away from The Friendship Home, a provider of respite care for families like mine. Cliff would spend two days "on vacation” with other men and women living with developmental challenges.  

That is not to say I’m not conflicted about it.  I am simultaneously terrified of trusting strangers to take care of him, and dreamily contemplating the possibilities of forty-eight hours to myself. In the words of Harvey Fierstein, “Is that so wrong?”

Let’s continue along this line of questioning. Is there a woman who has not experienced the push-pull sensation intrinsic in the journey through motherhood? Can we not admit to holding our children tightly to our chests one moment, and flinging them away from said chests in a desperate bid for appeasement in the next?

I have held Cliff tightly for his whole life, going on twenty-nine years, and frankly, he’s ready to fling me away for much the same reason.

Somehow I expected to feel a terrible sense of loss similar to what I felt when I dropped my younger kids off at college for the first time. The tears, the worries about safety, the empty chair at the kitchen table, all of it. What came instead was a surprisingly short-lived melancholy followed by a bit of wandering the house without purpose, followed by a sense of calm. That is to say, I missed him, but I have begun to see the idea of these short excursions away from him as training ground for the future.

The training ground is his as well. I like to call them baby steps—these hours in the company of people who don't know him. As much information as I have given the staff at The Friendship Home about his routines, habits, abilities and challenges, he must still figure out how to make himself understood, how to negotiate to get what he wants.

When my husband and I picked him up on Sunday, he was sitting contentedly in a cushy chair in front of a roaring fire. Not too shabby.

In the end, what I want is a bigger world for him. And I won’t lie—I want a bigger world too.

In our plan for his future, he must see the possibility for happiness in a mother-less/father-less time. Happily, we are young, he is young,  and there is opportunity enough to venture beyond the scope of home. Life stretches before us, inviting us to enter through doors not our own.  But if time should turn out to be short, why not make the most of it now? 

Last night I drove Cliff to a dance where he ignored my existence for a good part of it. About twenty minutes before the night was to end, I ambled over to see if he would consider a dance with his old mom. The closer I came, the farther into the corner he went. So I stood and ignored him right back. Before long I felt him wordlessly at my side, evidence of the push-pull the son feels toward the mother.

The DJ played Macklemore’s Thriftshop, a favorite of ours. We sang the chorus as we danced in circles, clinging to a singular moment of giddy freedom.

 

Surprise

One of the gifts that come with raising a child with Down syndrome is the element of surprise that arrives with it, like opening a box in which the contents drift out like helium-filled balloons. He surprised us on the day he came into the world—I had felt in my bones he was a boy, and though I had had an intuition of his unique genetic makeup somewhere in my seventh month, it had not yet risen to the surface of my awareness. Much later, once the shock had worn off and we had all settled into life in our small apartment on Leicester Street, I would occasionally recall month seven, in which I had had a dream about a baby boy lying on the rug, crying. In the dream I knelt on one side of the baby, a young woman knelt on the other, smiling. The woman was causing the baby distress somehow and I did nothing to stop her.  I had decided there wasn’t anything to the dream, dismissing it as typical of an anxious mother-to-be.  But I could not forget it.

One afternoon in Cliff’s infancy, as he began a physical therapy session with a visiting therapist, the dream came over me as déjà vu. It was all there, the details I hadn’t forgotten—the smiling therapist teaching me how to get Cliff to claim the muscles in his upper body, his crying in red-faced fury at the utter unfairness of it all. "Oh my God," I told her, "I dreamed this day months ago!" When I think back on it I can’t help but be amazed at the ways our minds work in tandem with the universe.  A second surprise.

This was all long ago, but through the years the surprises have continued. Some were welcome, like the day he finally took his first steps at the age of twenty-two and a half months, the December morning he spoke his lines on cue ("Ho,Ho,Ho!") in a third-grade production of  “Santa Claus is Coming to Town”; the way he sings at the top of his lungs when he's in the mood, with a vibrato flair on the final notes. Other surprises have been not as welcome. Despite a promising start, he was not able to learn to read or write, and he regressed in verbal expression, a heartbreaking development we still can't understand. 

Cliff had never been what one might call the “outdoorsy type,” often eschewing any suggestion of heading outside to play, so when my husband suggested a few years ago that we try taking him on a hike through the woods, I was dubious. I figured we’d get there, take a few steps on to the paths at Blue Hills, and turn around once Cliff tested out the unsteady surface of rocks and heaving tree roots.  What my husband and I experienced on that first hike was the obvious connection our son had to the wooded surround of tall trees, as if hearing the calming voice it held.  He had proved me wrong. Instead of protest, silence. Instead of retreat, a purposeful movement forward. Instead of fearful timidity, fearlessness.

The surprise comes each time we enter into the shadow of the trees, sunlight streaming in through the breaks. His self-talk, some of it loud and full of anxiety on the drive over, lessens as the natural surroundings enter his conscious mind. The hush is a blanket of silent snow, and our son’s resurgent energy appears. He switches the walking stick from left hand to right, the sound of birds above. The absence of his chatter makes it feel like a holy space, like church. Ken and I watch the transformation and sigh.

Nature's examples of regeneration and resilience are most alive in me when I feel the warmth of the sun, particularly in the colder months--Sun's ability to penetrate the car window as I drive around and Sun's gift of the warm spot on the floor where I step. I love that so much! I have to mention the sight of birds flying in formation in a boundless blue sky, the surprise of a bluebird or robin seeming to jump the brief distance in a close-knit copse of trees, one to the next. I am mesmerized, standing in awe when I see birds in flocks, uncountable and flying low in unison and up again, over and over in a great game of hide and seek among the high bushes. We are not so different, my son and I.

When we are not in the woods, busy going from car to store to home, sometimes I stop to point out what he doesn’t notice and we stand there watching clouds move, the wild turkeys walking in a fretful line across Elm Street, or breathing the scent of lilacs.

The balloons come with welcome regularity, drifting out of the open surprise box that is our life with Cliff.

*********************************************************************************
This is an alpha-poem I came up with, in which a word is spelled vertically on the page and each successive line begins with the next letter down. (It is NOT an acrostic!) I chose the word RESURGENT.  It reminds me of our hikes in the woods.

Responding to the

Essence of what

Surrounds me

Until the bells

Ring and the

Ground swells beneath my feet

Ever lifting me up into

Namaste, I bow

To thee.

If Only

"The tighter you try to squeeze your fists, the more it all oozes through your fingers."--Vincent Cortese, close family friend and father of three .

My most recent post, "Control", brought me back to a poem I wrote months ago and re-discovered while looking through my notebooks. I decided to include it here because it seems to fit thematically with ideas I wrote about in that essay. Originally, this was an exercise suggested by one of my writing group friends but I've forgotten the intention. It ended up being a tongue-in-cheek prose poem about weeds and, well, I don't need to tell you. Anyway, lately I'm observing more and more often how my children, my sisters' and brothers' children and a few of my friends' children, are making their own choices at still-tender ages without any input from their parents. It's a bit of a shock when it first happens, when a son or daughter says, "I'm getting a tattoo" or "I'm quitting school" or "I've signed up to join the Army."
There are days we wonder if we could have done anything differently so that the outcome might be more in line with our values and our dreams for their futures. Recently, Louie CK, a popular comedian, was quoted as saying, "I'm not raising children; I'm raising the grown-ups they're going to be someday." It's an idea worthy of remembering while our kids are still pliable. 
Ultimately, all we can do is our best in that endeavor. All we can do is what we are capable of doing. At some point, it's simply time to get out of the way, let them make their mistakes and recognize that once they are under the illusion they have reached adulthood, our instructions fly out the window, at least until that joyful day when they miraculously come back home to say, "You taught me well." While we're hanging around waiting for that to happen, it's all we can do to stay sane. There is the sudden recall from 1973 of the policeman shining his flashlight into the back seat as we scrambled to put on our clothes; of sitting in the back of the ninth grade science teacher's classroom smoking pot; of barely making it home after a night of bar hopping after college. We're on the other side of it now, wondering why they won't listen to us, especially once we've bared our souls, telling the stories in which we are the main characters just so we can prove we were young and stupid once too.
The bottom line is this: Control is mostly an illusion. The sooner you admit it, the better off you'll be. Just ask the weeds in your garden.

                                                             If Only

 

Far be it from me to criticize, but I must say,

If only the flowers in the garden had the same tenacity of weeds,

the unflagging determination of the chervil,

for example, with its maddening insistence

on poking through six layers of mulch,

or the haughty giant foxtail, brazen in its forced juxtaposition

with my brilliant- green lawn.

 

If only the flowers I planted would fight for their rightful places

in the curves of my beds, not politely stand aside,

as if to say “Welcome!” as the bull thistle lives up to its name.

Perhaps the purple dead nettle has not understood

the animosity of my spade when I punched

the soil with vehement objection

and flung its brother onto the pile, which I started just last week.

 

Even the thick black fabric tightly woven

and placed carefully around the mailbox post fails me,

inviting nature’s junk, incongruous as an old tire

sitting among the gladiolas.

I am considering waving the white flag of defeat,

retiring the garden tools having fought the good fight.

I am tired.

 

Besides, what beauty there is in wildness,

in the adorable chickweed bowing and scraping under

 

the yellow sweet clover.

And let us not forget the butter-yellow dandelion,

gathered in chubby little hands, presented

in loving gesture for placement in the Mason jar

in the middle of the kitchen table.

Control

The first recollection I have of falling in love with Control was the day I successfully played hooky from the sixth grade. I wish I could recall the specific circumstances under which I endeavored to do something so risky and, I might add, quite out of character. I was a rule follower for one thing, and for another, the nuns were capable of doling out severe punishments for much lesser transgressions. I can say with certainty I was attempting to avoid some dreaded unpleasantry.  

Most kids got into trouble for talking. Not me. I got into trouble for not talking. There’s a name for it now—selective mutism—but in the 60’s and early 70’s the term used to describe me was “shy”. It’s considered a legitimate disability these days, and teachers actually have to HELP you if you have it. Back then teachers only knew how to make it worse. My sister, Lisa, had it too, and we both recall the nuns getting so angry because they couldn’t Control us, couldn’t make us talk no matter what they threatened or how they badgered.

"Are you a baby? Huh? Do you wanna go down to the kindergarten where the babies are?"
"Do you know the answer to this question? Yes? Then stop nodding and answer, please. Well, you're not answering so you must not know it. Who can tell Celia what the answer is?"

I can’t ever remember wanting to go to school. The nuns could be bullies and I suspect, probably got together around the dinner table each night, thinking up ways to humiliate children. They delighted in catching students committing acts that would surely send them to hell. In fact, the following year, Sister Michaeline called me up in front of the class along with Donna Repaci, because we were guilty of hiking up our skirts in an effort to be more attractive to the boys.  Donna and I were told we would land ourselves in Hell and the fires would burn us up to our skirt length. Sister measured our bare legs with the yardstick so everyone could attach a horrifying visual to their imaginations. I got off relatively easy; I had only to unroll the band at the top of the skirt. Sister forgot about me because poor Donna, in a cruel twist, was accused of wearing lipstick and was sent crying to the bathroom to wash it off. I, at least, was able to skulk back to my seat. I remember Donna Repaci’s lips and I know for a fact she did not wear lipstick; her lips were dry and tended towards a white sort of dryness. In those days, white lipstick was the style, hence the nun’s assumption. The bottom line is this—most of the nuns at Corpus Christi School during my tenure there did not especially like children; what they did like was being in control of children.  

Miraculously, no one called home to find out why I hadn’t come to school. That day, despite the dark, damp, spider-webbed stairs of our bulkhead, I was safe from embarrassment and condemnation to hell. For six hours I was in control of what I did and thought about, what time I ate my bologna sandwich and Ring Dings. I had taken with me the flashlight from the junk drawer in the kitchen, and the Wuthering Heights book I had stashed in my bookbag to keep me company along with my imagination. I liked being in control of my own life. I hold those few hours of silent protest as the genesis of various transgressions to follow in high school, college and young adulthood, sins both venial and mortal. 

When I became a mother, Control became an extension of my anxious self, and the quiet mousiness with which I had lived my life BK (Before Kids) was considerably reduced. In my defense, Control meant my kids wouldn’t get hurt or die. There were times I followed Max’s school bus on its route to Maple Hill Elementary School, because I had heard the bus driver tended to floor it when she drove down the country road past the Buffalo farm. Olivia protested vehemently each time I walked her to friends’ doors so I could lock eyeballs with an actual adult before ninth and tenth grade sleepovers. Cliff bore the brunt of most of my obsession with Control; he was my only child for six years and needed protection every moment. Having Down syndrome meant a particularly specific kind of vulnerability. I must have appeared terribly pathetic to the preschool principal watching me peer through the rectangle of glass in the door, unable to return to my car to drive home unless I knew for absolute sure that my baby was not crying, scared and feeling abandoned by his mother; after a week of failing to reassure me, she offered me a classroom aide job in the room across the hall.

My kids have grown into adults, at least in the chronological sense, and I have had to let go of my companion more and more so as not to alienate them.  They sigh and shake their heads when I do things they wish I wouldn’t do. I bought a safety device with built-in GPS for Olivia to bring on her walks from her apartment to the UMass Boston campus. I felt less worried because all she has to do is press a button and the police/fire/ambulance will find her within minutes and save her from the unsavory figure in dark clothes following her home. In her own bid for control, I noticed it was still in its box when I stopped by her apartment recently. Max, who is deathly allergic to tree nuts, has had an almost cavalier attitude about wearing MedicAlert jewelry. He won’t do it. Luckily MedicAlert makes small silver bars for stringing to sneaker laces, and I’ve attached the bracelet he won’t wear to the strings of the nylon sling pack he carries around. Every six months, the expired EpiPen inside is switched out for a new one when he isn't looking.

I’m not completely over the control that Control has over me; I may never be, but it’s getting better. My goal is to land my helicopter for good by the year 2023. Thank goodness Cliff is still reasonably okay with my sneaky machinations. It’s easy to pull the wool over his eyes, though. I’m proud to say I recently left him overnight with Max when Ken and I attended a wedding several hours away. Naturally, I left a 15-point set of instructions, followed by several texts that started, “Just in case…”

It’s a step forward.

To my knowledge, none of my kids played hooky in our bulkhead, but they’ve gotten into other types of trouble through the years in spite of my vigilance. I’m glad for it, in retrospect. I have learned, albeit a bit late, that Control is only useful to a certain extent. I’m slowly coming to accept that all I am truly capable of is Influence, Guidance and Opinion; the rest is up to God and Fate.

Quirky II: What Came Next

Quirky II –What Came Next

(Note: It's helpful to read Quirky I to know what the heck this one's about. But whatever. I'm just so glad you're here!)
 

Cliff sat on the examining table in the windowless room, patiently listening to me talk. He was giggling to himself, offering an occasional nonsense word to no one in particular, but completely aware and curious. He is always in this world, even when you think he isn’t. Moments before, I had seen a look of surprise cross his face when Ben, the young man who interns in the Down syndrome Clinic at Mass General, came out to the waiting room to fetch us. Like Cliff, Ben has Down syndrome too. Cliff didn’t expect that.

"Cliff Taylor? Hi, I’m Ben. Come this way.”

“Have you ever sought help from professionals before?” Allie Schwartz, a lovely, dark-haired young doctor, sat at a small desk taking down any information I had not included on the intake form.

“Sure,” I replied. “We’ve spoken to his primary care doctors, his teachers, a psychiatrist, a psychologist, a neurologist, behavior specialists, and Dr. Crocker.”  The late Dr. Allen Crocker was a pioneer and expert on the subject of Down syndrome, well-loved and highly revered by everyone who knew him.

“And none of them was able to provide you with answers?” Dr. Schwartz spoke with a gentle curiosity, and listened intently to everything I said. We had waited two months for this appointment and now that we had finally arrived, the floodgates were about to burst open. I was either going to cry in front of this woman or start talking in that agitated, exasperated way that is never a good idea. If I had had any sort of reasonable explanation before, I would have saved myself the trip. But I hadn't had any sort of reasonable explanation, and we were all getting older by the second.

In this little room with Dr. Allie Schwartz listening, considering every word, and Helen, the social worker sitting to my left, I let it all fly. I was frustrated at the paucity of the kind of information I sought and particularly at the lack of connection among the agencies created to help families like mine. How many books have I read? How many articles? I’ve lost count of them all. I’ve lost count of the questions, the experts, the conversations, the appointments, the medications. For a long time, my husband and I simply accepted the fact that our child was not typical of people with DS. It didn’t matter to us. It doesn’t matter now. We love who he is. Everyone who meets him loves him; he’s sweet and funny, amiable and flirtatious. He's proud of the medals he's won at Special Olympics and knows instinctively that Grandma is lonely for Grandpa and needs a longer hug than usual. He has pet names for his brother and sister. He'll shyly extend his hand for a handshake when he meets someone new and is genuinely happy to meet you. He’s perfectly wonderful. Except when he isn’t.

I had brought Cliff here because I don’t understand him lately, and I have always prided myself on understanding everything about him. I don’t know why he is almost never quiet, why he makes so much noise, why I have to ask him to please use an inside voice every time we’re at the store, why he has vocal tics, what I’m not doing that I should be doing to ensure his happiness and well-being.

This is what I told Dr. Allie Schwartz that afternoon, in the windowless room with Cliff sitting on a table. I wasn’t looking to “fix” him; parents like my husband and me operate from a deep desire to make life better for our kids. In our estimation, Cliff’s behaviors had closed some doors over the last few years. We need to figure out how to throw those doors open again.

Dr. Schwartz understood all that, and made her recommendations. She wasn't sure what might be at the root of the difficulties I had listed. By the end of the visit I had at least come away with a plan of action. We would make appointments to see two more doctors: one would do a sleep study to rule out, or in, sleep apnea. The other was knowledgeable about Down syndrome and the difference between quirks (the word I’ve often used to describe Cliff’s shenanigans) and actual medical or psychiatric diagnoses.

After she left, we met with the nutritionist, who told me Cliff is nineteen pounds overweight. Ben returned with his iPad to give us a presentation on sleep apnea, complete with a photo his mom had taken of him wearing a C-pap mask as he slept. Helen the social worker gave me information on a place called Friendship Home, which was very exciting; If we were willing to travel an hour away, Cliff would have the opportunity to make a new set of friends and spend an occasional weekend with people his own age. Finally, we talked to a woman in charge of research, and I signed off on their use of the information collected as a result of Cliff’s visit. I’m completely on board if they can use it to help develop a clearer picture of individuals with Down syndrome.

In the days that followed our visit, friends and family inquired about the outcome, and each conversation reminded me of the tee shirts tourists bring back home from trips to faraway locales. The ones that say, “My mother/father/grandpa/grandma went to Tahiti and all I got was this lousy tee shirt.” They were expecting fancy cigars and chocolates, so they seemed slightly disappointed.

I understand their feelings completely. I went to the Down syndrome Clinic filled with unreasonable expectations. I realize that now, but despite the unanswered questions, I continue to be hopeful. I’m on the right road, traveling with people who are familiar with the terrain around here, and pointing out the signs I need to follow.

Like Ben said, "Come this way."

Maxwell James, Age 10

 

 He’s a grown man now,

Full of my instructions.

I taught him to understand

remorse, how brave we must be

To admit when we are wrong.

 

My neighbor said my son had

Teased hers, who was autistic and

Felt cruelty like anyone else.

He had been crying for an hour

At my son’s betrayal.

 

I asked him how it would feel

To watch a bully tease his own brother,

Older by six years but fragile and exposed

to the same kind of cruelty.

His face grew hot with red shame and contrition,

That day’s lesson of thou shalt not.

 

He told me he was sorry and begged me not to make him go.

I watched from the driveway as he slump-shouldered

His way slowly across the lawn, tear-streaked,

His superhero sneakers scuffing the dirt.

My heart seized in my chest as he raised his fist to knock.

 

He’s a grown man now,

Full of my instructions.

I raised him to remember compassion,

Feel the weight of his power

to choose.

Quirky

After my shower, I walk across the bedroom to rummage through my jewelry box for a pair of earrings. I slip on a bracelet and fumble with the clasp on my watch, listening for familiar sounds from downstairs. I’m the only one home at the moment and the watch clasp isn’t cooperating and I can’t decide on earrings and it’s all taking too long. It bothers me that I can’t hear anything except for the TV show I’d turned on for Cliff earlier, so I abandon the watch and race down the stairs to check on him.

Jojo, our Springer Spaniel has decided to race down with me and I almost trip over him. I find Cliff sitting on the couch, quiet except for the tap-tap of his fingers on his headphones. I can faintly hear the song playing on his iPod as I get closer, a ballad too slow dance to.  I walk over and pretend-tickle him before I go back upstairs to finish dressing, and promise to be right back. I don't like to leave him alone for long; I don't know why, except that I've never outgrown the anxiety I've owned since he took his first breath. It's irrational, I know.

Silence is an uncommon sound around here, so I don’t trust it. Cliff has always talked and sang and laughed to himself from the time he was very young. When he isn’t talking to himself, he’s making raspberry sounds, knocking on a window or a cabinet door. It’s a quirky aspect to his personality, and hasn’t been a problem, at least not until recently. There is always noise where Cliff is concerned. In conversations with other parents of adult children with Down syndrome, I know that many of them have similar quirks, including self-talk.  

That afternoon before settling down to write, I gave myself ten minutes to waste time checking out an online store I liked, and there it was-- a slate blue tee shirt  with the word “Quirky” printed in bold black lettering in the middle of it. It was perfect for Cliff. The word’s playful connotation captures a side of him only those closest to us ever see.

But lately I’ve been wondering about some of the quirks. During a disastrous lunchtime visit to a restaurant several weeks ago, the self-talk took on an agitated affect. Cliff was so loud the people at the  tables nearby stared at us. His words weren’t making sense. When I got mad at him and told him to cut it out, he looked at me and said, “Stop it, no!” We left before we were finished our meals. It wasn’t the first time the agitated talking had taken place. It’s been a pretty regular occurrence at the grocery store and for awhile I chose to shop alone because it wasn't worth the aggravation. So my husband and I are left with questions. Is this new development a symptom of something serious? Have Cliff’s quirks become so pronounced they have gotten in the way of his ability to live a full life? What are we missing?

The truth is I have begun to worry about the questions a great deal.

The quirks we don’t worry about, like unrolling most or all of the toilet paper into the toilet, pumping out large volumes of foam soap onto his hands when he’s washing up, and pulling the Kleenex out of the box until it's empty, seem to be nothing other than a way to amuse himself.

Others are charming, even endearing. He enjoys slowly turning the pages of a magazine until he gets to the middle of it, for instance, only to start over again from the beginning. He dislikes showers so he takes baths, which I draw for him as if he’s Lord Grantham, and he wants to wear his terry cloth bathrobe afterwards even when it’s a hundred degrees. If there is an unattended plate of food or glass of juice in his path, the original owner is unlikely to come back to find it uneaten. He unties his shoe laces several times a day; he likes holding a yo-yo or Koosh ball while he dances to the music on his iPod, is afraid of cats and the dark, and won’t lie on his back at the doctor’s office. If he hasn’t seen you in awhile and sometimes even if he saw you five minutes ago, a hug can last upwards of a minute or two.

In the past two years, however, our family, our extended family, and the staff at his program have noticed an increase in both the frequency and the amplification of his self-talk. At times it can drown out the television, the car radio, and conversations in the next room.  These are red flags, particularly because Cliff’s self-talk has become an obstacle, both for his life and for ours. We have had to limit many of the activities we’ve always been able to enjoy with him. Quiet restaurants, concerts, plays, church services, friends’ homes, are crossed off the list of possible outings.  The more we tell him to use a quiet voice, the louder he gets. We finally figured out that he is not always capable of controlling it but if we react calmly he is better able to at least try. It is Tourette’s-like in its presentation, vocal tics with words and phrases from his limited vocabulary. He says the words he knows how to say, but they are never in proper context.

 

We're hoping for some answers in just a few days. Cliff and I will head over to the Massachusetts General Hospital Down syndrome Clinic at the end of the week. There are people there who will understand him. We’ll have a little adventure, he and I. Perhaps we’ll try out a new (preferably noisy) restaurant on the way. Maybe he’ll want to wear his new shirt, the one with the word Quirky written in bold black lettering in the middle of it.

I think that sometimes, if you can give a name to a problem, define and organize it, it ceases to overwhelm you. You begin to understand the bones of the thing, build the organs, blood, muscle and finally, the skin of it. When it stands where you can see it, it’s much easier to find the way around it.

 

To be continued…

Want Ad

My son lives at home with my husband and me and my two younger children. For now, that arrangement works just fine. Like other young men his age, however, he’d like to go places and do things that don’t involve us. I would like that too. In order to accomplish that, I have to pay someone to spend time with him. That’s a fact of life, a situation I’ve gotten used to for the most part. Over the years we’ve had a few respite caregivers, but of course arrangements like this don’t last forever. The people we came to trust, and to whom Cliff became attached, ended up moving on for various reasons. Some were working their way through college, one had a baby, and a few found full-time work.  A couple of them did not measure up to our expectations, so we didn't invite them back. Our favorites were those who did it for the love of working with individuals who don’t possess the abilities needed to wander the world without help.

I had an idea for an ad that might attract a few good people, because Cliff needs to get out of this house and away from us once or twice a week.  Here goes:

Wanted:  man or woman to hang out with 28-year-old occasionally quirky, occasionally loud, occasionally stubborn but always charming, young man with Down syndrome. Preferred activities: hiking, restaurant-hopping, movies and concerts, bowling, dancing, basketball, window shopping, or any combination thereof. Must be young at heart, honest, appreciative, and accepting of, differences, have a good sense of humor and be okay with walking at a leisurely pace. Patience is crucial, as is tying and re-tying shoelaces several times a day. Experience in the use of singing/dancing to get a laugh is helpful. Must have safe car with working seatbelts, good tires and a radio set to lively music.  Successful candidates will receive compensation and, more importantly, a loyal friend for life.

The ad is not your typical ad, I realize. I’m certain there are people who fit the description; I just have to find him or her, someone  genuine who likes my kid and wants to hang out with him. Be his friend. Stick around awhile.

Until about a year ago, Cliff spent nearly every Saturday with J. a young man he knew from work. J. was Cliff’s job coach for a time, and Cliff was fond of him. We liked him too. We hired J. to be our respite provider not because we needed a break from Cliff, but because Cliff needed to spread his wings beyond this house with someone his age. J. would arrive around noon to bring Cliff out for four hours. It was great in the beginning. Cliff was overjoyed when his friend showed up, and my husband, Ken, and I felt the same way; if Cliff was happy, so were we. The relationship between J. and the Taylor family lasted close to two years.

Before Cliff left the house with J., I would get a verbal itinerary of the next four hours. Naturally, I assumed they went where J. said they were going. Bowling, the mall, out to lunch and to the park to play basketball. Once, when J. said they ended up at his apartment instead of the places on the original itinerary, he explained that the plans he made had fallen through for some reason. Instead of checking in with me for an alternative plan, J. had driven Cliff to his apartment where Cliff fell asleep watching TV in J.’s living room.  Cliff isn't much of a TV watcher.  It wasn’t fair to him to be plopped on a couch in an apartment I’ve never seen, possibly with people I don’t know.  I sat J. down one Saturday and explained Cliff was not to go to his apartment. I reminded him of the obligations he accepted when we agreed to employ him. Cliff had to come first. J. had to always, always tell the truth.

Then, one afternoon, Cliff returned from his day out looking exhausted. The two of them had walked the perimeter of a small park for half the allotted respite time. (I am prompted here to use the inappropriate yet perfectly expressive question: WTF?) With so many other activities available to them, I couldn't fathom how he made the decision to drag the time out in that way.  For a few weeks afterwards, I set the itinerary myself, along with instructions to call me with any changes.  He agreed, but I couldn't shake the feeling that J. did what J. wanted to do, despite my best efforts to control the situation. My intuition kept telling me to check for holes and tears in the fabric that held this friendship together.

One Saturday, just before leaving with Cliff for the afternoon, he told me a story about his boss at the pizza place. The boss wanted him to work during the time he usually spent with Cliff. What he said to his boss was, “Ok, it’s like this: I can work for you for $7 an hour or I can go hang with Cliff for $15 an hour.”  He chuckled like he hadn’t just stabbed me in the heart.  He said it twice more over the next few months. I had planned to discuss the hurtful comment with him but I never got the chance.

Last summer, J. just stopped showing up.  I called and texted but got no response.  For the next two months, there was no communication between us. Shockingly, around the time Cliff and I had become accustomed to J.'s absence, I received a phone call from a woman who said J. had listed me as a reference for a job at a group home for adults with intellectual disabilities. I told the woman J. had cut off communication with us with no explanation, and that I questioned his dependability. I could not, in good conscience, give him a good reference.

“J. told me his phone had been stolen. Perhaps he couldn’t contact you.”

"How is that acceptable? I have to believe that somewhere in the state of Rhode Island there was a phone he could have used. My son has been disappointed over and over again for weeks, and I could never explain to him why.” 

Two days later, on Cliff’s birthday, I received a call from J. He remembered what day it was but didn’t ask to speak to Cliff. He wanted to know if he could start working with him again. He never said he missed Cliff. Never asked how he was doing or what was new in his life.  Naturally I asked him what had kept him away for so long. When he said he didn't have a phone, I let him know that just didn't fly. While I believe he was fond of Cliff in his own way, and that his mistakes might be attributed to immaturity, I can’t imagine a scenario in which J. will ever be a part of our lives again.

I knew how much Cliff liked and missed J, but J. had let him down. After all the time they had spent together, J. didn’t have respect for Cliff’s feelings, or for mine.

Cliff’s brother, Max, weighed in when he heard J. had tried to get his “job” back. “Mom, J. doesn’t deserve Cliff.”   I couldn’t have said it better myself.

One of the challenges families like mine face is finding the right people to allow into our lives. Above all, we don’t want our children to be disappointed or hurt, to grow attached only to be ditched in the end. There is a vulnerability that can’t be ignored. Yet, I have to believe there are people and situations put in our paths that do lead to hopeful resolutions.

 The future is full of Saturdays yet to come. I have to help Cliff fill them.

Carry On

Each day is a story. Inside each day there exists a plot, as well as a sub-plot or two by the end of it. Each has a cast of characters, a beginning, middle and end. Somewhere in the rising action, a conflict presents itself, or perhaps a question is asked, and the author of the day attempts to resolve the conflict or to answer the question as best she can. On this day, the story is about how and if I can finesse a happy ending.

The main character is twenty-eight-year-old Cliff, my son, who is mostly like every other human being God made. He has preferences, opinions, people he loves and people he tolerates. His list of favorites includes egg sandwiches, music, dancing, his room, his family and his best friend Seth. He has routines, a full life, and the best laugh I've ever heard. He was born with a third copy of the number twenty-one chromosome, a condition that has rendered him...amazing. But he depends greatly on others and is unable to speak more than a few words. Unless he's singing.

 
As the story begins, I sit next to Cliff with my notes in front of me at his yearly ISP meeting, mangling my cuticles under the table as I smile at the four women assembled there to discuss his progress. My younger son accompanied me today at my request. With my husband busy at his office, Max is the logical stand-in.  Max is twenty-two and the second of my three children. The four women are people who spend many hours with Cliff during the week or have an official capacity within the organization. They are kind people, and they maintain a fondness for him. But they will talk about Cliff as if he isn’t there, as will I. It can’t be helped-- he is not capable of entering into the conversation, except for the occasional yes or no answer to questions with obvious answers. “Cliff, you like to go swimming, right? Cliff, it’s fun to come to work, isn’t it?”

I would prefer it if he wasn’t sitting in this small office, captive and bored. But he is legally an adult and it’s his right to be here. Therefore, no one has asked my opinion despite the fact I am his mother and legal guardian. The vans have already left to bring the others to their respective jobs or activities. If they had given Cliff the choice, which is also his right, he would most surely have chosen to be anywhere but here. I pat Cliff’s hand and make funny faces at him to make him laugh. There is no good reason for him to sit here with nothing to do when he should be off somewhere with his co-workers.  He and I are both tired of the rules. If you happen to be born with one more chromosome than most other people have, the rules can become tiresome.

Until the meeting gets underway, everyone indulges in small talk, prompting Max to sit still in his chair hoping he won't attract attention. I had promised he wouldn’t have to say anything; I meant that he would be an observer,  because I want him to learn what occurs at an Individual Support Plan meeting.  Try as he might  to make himself unobtrusive, the women are curious about where he went to school, what he studied, how he feels about being invited here by his mom. I feel his discomfort—we are very much alike—but I love to watch him good-naturedly respond to their questions; like his big brother, he is handsome and charming.

I don’t have to pay full attention in these first moments, and my thoughts drift off. I rearrange my notes and I think about being thirty-nine.  At thirty-nine, I made the decision to become a runner. I wanted to lose weight. Though I was initially motivated by vanity, I became addicted to the way it felt to become lost in thought, immersed in the calming nature of  sunbeams streaming through the breaks in a canopy of trees overhead, It felt peaceful to watch the way Autumn breezes moved leaves around in circles in the road, to catch the scent of freshly-mown grass, feel the chill in the air, even the pelting rain. Running made me happy. When my knee gave out last year, there followed months of physical therapy, then knee surgery followed by more therapy, and the pain moved beyond the physical. The reality was I was no longer a runner. It prompted periods of deep sadness that crept in like fog, and I didn't feel strong. I felt old. It felt a little like someone snatched the seat I was heading for during a game of musical chairs. Celia... you…are…out.

Cliff has been in this program since 2007 when he aged out of the Franklin Public School system. Two days a week he works for a small paycheck; three days a week is spent at a day habilitation where he does volunteer work, gets occupational and speech therapy and plays games. The two programs complement each other, but today our story centers around the two days a week he is here with the friends he made while he was still in school. Until two years ago, his paycheck came from a job he had in a high school cafeteria. When his position as a cafeteria worker was eliminated, the program coordinator had a difficult time finding him other work for which he was skilled. It hasn't been easy, due in part to the lousy economy. It affects the program as well as businesses who are unable to hire extra people. No one is immune. This is why each meeting since he lost his job has an elephant in the room. They dance around the topic because they know I want them to keep trying. It would be easier on them if Cliff went full time to the day hab. Cliff and I are against that plan.

Today, the director tells me, “Cliff is in a 1:4 staff to client ratio, but staff reports it’s difficult to keep him on task. We can’t provide him a one-to-one job coach due to budget cuts. (” Cliff is a “client”, which is program- speak for a person who gets services from the state. If I had the money, I would create my own business, hire Cliff and his friends, call him an employee and give him all the one-to-one he needs. But I don’t have the money.) Under the table, my knee twinges. 

Sometimes these “grown-up” meetings remind me of his school days, particularly those during which I had to endure the endless “can’t-won’t” statements. “Cliff can’t walk independently to the classroom; Cliff can’t focus on a task for longer than a minute or two; Cliff won’t look both ways when he’s crossing the street.” The statements would be delivered as if they were news flashes I wasn't already aware of. Despite my pre-meeting resolve to remain calm and strong, my voice would shake and I had to hold back tears.  I already know his limitations, of course; hearing them spoken out loud is like listening to the news in a looping news cycle-- just at the point of saturation it goes away for a time, only to return with new developments. Just when life has returned to a happy normal, someone reminds you it ain't over. And though you already knew that,some nuance makes it feel fresh again. It becomes magnified—Cliff’s main identity as our son, as Max and Olivia’s big brother, as a friend, a cousin, grandson, is usurped by his student- self or his program- participant-self. News cycles are notorious that way-- just when you think you’ve heard enough, suddenly we’re remembering the anniversary of this or that, and once again we’re struck by its significance.

As if the elephant isn't enough of a conflict, a second one enters. It’s an additional bone of contention lately each time we assemble for these meetings. “What we've noticed here at the program is the friends he followed from school to work--Alex, Meg, Molly, Matthew,--aren’t close with him anymore”, she begins, “so it’s not like they socialize together when they’re here.”  I think about running and my bum knee and the absence of leafy trees overhead.  Though I want to slap the table, I don’t slap the table. I pat Cliff’s hand instead, meeting his eyes, the part of this story in which the climax occurs. From somewhere outside myself, I find my voice. I am running down the road, my breath in measured huffs in sync with my footfalls.   

“Cliff may not socialize with them here," I begin, "but they are still important to him. They care about each other and I don’t think any of us is in the position to assume which people mean something to a person and which ones don’t. He has deep connections to both programs and he benefits from both. Please. It will be terribly disruptive to have him transition away from here completely.”

Everyone nods in assent. No one speaks. Max listens intently and I half expect him to say something in the silence. "Ok, then," says the case worker, "let's reconvene in six months."

Meeting over, my body seems to replicate the cool-down after a three-mile run, slower breaths, exhilaration. For now, nothing will change in Cliff's life.

This day's story has a satisfying denouement.  Cliff goes off to eat his lunch with the staff.  Max is mostly quiet as we leave in our respective cars; I wonder what he thought of his first advocacy experience. I hope he has begun to develop an understanding about the importance of speaking up for what his brother needs, wants, and deserves.

When I get home, I change into my workout clothes. Today I reject any propensity for weakness. My favorite route is flat and long, and a beautiful day stretches out before me. I walk until I can run, careful, short- burst distances at first, just enough to remember how it feels to be thirty-nine again.

 That’s how you do it—one story, one day, one step at a time.

 

 

 

 

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When, Still

"When, Still"

When he was twenty-three and boyishly handsome,

he asked his young wife, “Will you still love me many years from now,

when my hair is sparse and my beard is gray?”

 

“I will love you then, yes.”

 

When he was thirty-five and his arms

could pick her up and lay her down on their bed,

he asked his pretty wife, “Will you still love me many years from now,

when my arms and back are too weak to carry you?”

 

“I will love you then, yes.”

 

When he was fifty and his legs

could climb the stairs to bring her flowers on Sunday mornings,

he asked his beautiful wife, “Will you still love me many years from now,

when I can no longer plant the roses that grow in the garden?”

 

“I will love you then, yes.”

 

When he was seventy-one and he could take her

to all her favorite places in the world,

he asked his lovely wife, “Will you still love me many years from now,

when the only place I wish to be is home?”

 

“I will love you even then, yes.”

 

When he was eighty-five, and his eyes began to fail,

he asked his faithful wife, “Will you still love me when I can no longer

see how beautiful you are?”

 

“I will love you then, yes. I love you now. I’ve loved you always.

 

When he died, and she buried him in the town where

they had spent their lives, she imagined him asking her,

“Will you still love me when I am gone?”

At his grave she stood on unsteady legs and answered him.

 

“You loved me when I was young and pretty.

You loved me when my bones ached and when dark shadows

formed under my eyes. You loved me as I became forgetful and when I cried

for our children moving away.

 

But of all the days I loved you, I loved you most

when you worried I might not.”

 

In all the thousand days that followed, she tended

the garden, and placed flowers in a vase by her bed;

She traveled to the places he had not yet taken her,

and carried his picture in her purse.

 

In all the thousand nights that followed, she closed her eyes to sleep,

dreamed of him standing in the garden,

looking as he did when he was twenty-three,

until one night he held his arms out to her and smiled.

“Come.”

She went, because it was time.

 

And the garden bloomed.

Missing Mary Boies

On a cool fall day in 1986 I received a phone call regarding the shocking death of a dear friend.  I had known Mary for ten years, and lived with her for the first three of them. I was holding Cliff, my then-eight-month-old son, watching as Ken was about to take the air conditioner out of the kitchen window of our first apartment in Port Chester. It’s an odd thing to remember, the removal of an air conditioner. If you ask what I was doing when JFK was killed or where I was on 9/11, I could tell you those circumstances as well. Details small and large become interwoven with tragedy, vivid and enduring bits of memory that complete a story. I stood in my tiny kitchen with the phone to my ear, wondering how in the world she could be gone.  Cliff and I stood at the now unobstructed window, staring out at the trees and sky in silent remembrance. The last time I had seen Mary was soon after Cliff was born. She stopped by my apartment for a visit, before catching a train to the Buffalo suburb where her mother lived. By then she had moved to California, far from the cold climes where she had grown up.

She’s been gone twenty-seven years, but in my middle age I miss her more instead of less. I miss her voice but I can still hear it, the deep, confident tone and the distinctive Buffalo accent. In all this time I have not stopped wishing to sit with her once again, to talk long into the night about all the things we’ve done and seen. My friendship with her made a difference in the way I lead my life.  She taught me not to be afraid of becoming a grown-up.  I’ve not had a friend like her since, and likely won’t again.

“Only your real friends will tell you when your face is dirty.” That was Mary E. Boies, the person who immediately came to mind when I read the Sicilian proverb in a writing journal I own. She had no reservations about telling me the truth. She was funny like that. Never one to keep her opinions to herself, there were occasions in our time as roommates when I failed to honor the roommate contract in some way-- I hadn’t cleaned up after myself for instance, or she was annoyed with my boyfriend for overstaying his welcome--when Mary spoke up like the head of the household, no holding back. After the boyfriend graduated and left Buffalo to return home, I was fairly consumed by student-teaching and developed a mad crush on my cooperating teacher (the term used at the time to describe the teacher-mentor in the classroom) The mad crush lasted for the entire semester, and it concerned her. When I started with the “Mr. Goraj-this” and “Mr. Goraj-that”, she saw the dreamy far-away look in my eyes and warned me to snap out of it. In matters requiring the sensibility usually reserved for grown-ups, Mary excelled. Sometimes I think she burst out of her mother’s womb already filled with the wisdom of a woman, skipping over the awkward years when one makes most of the dumb mistakes of youth. She was ahead of her time, living her dream, like a bigger, blonder version of Mary Tyler Moore’s Mary Richards. She even had the same hat, the one Mary Tyler Moore throws up into the air, come to think of it.  

 I first met Mary in the winter of 1976 when I answered an ad thumb-tacked onto the commuter board, the type with phone number tear-offs at the bottom. She had hand-written the words with a fine-point Sharpie on sturdy construction paper, “Looking for a third roommate—female only”.  Her sign, adorned with her signature graceful bold lettering, stood out among the messy, loose leaf-ball-point-pen signs. We made plans for an interview to take place the next day.

The house was located on busy Elmwood Avenue, a mostly residential area on the main road near our college in Buffalo. Across the street was a submarine sandwich place, a Laundromat and a small convenience store. On the next block was a restaurant named BullFeathers, where Mary and I would later splurge on what were possibly the best Buffalo chicken wings I’ve ever tasted.

I was nineteen years old, naïve, and desperate to find housing after my first apartment didn’t work out. At the interview, I assured her I was not unruly or into self-destructive extra-curricular activities. She trusted that I would be able to pay the rent and utility bills on time. She smiled at me, and made me feel comfortable. Not easy, considering my generalized anxiety and the fact she had a prepared list of questions and house-rules in her hands. We liked each other right away, and I moved into the second floor walk-up right after the Christmas break. To this day, I can’t believe my good fortune.  It was a great apartment, more roomy and cozy than my last place, with a balcony perfect for the consumption of alcohol and people-watching.  Other roommates would come and go over the next three years, but Mary and I remained faithful to our commitments to school and to each other. We got along like sisters, groaning about the amount of schoolwork we had to do, drawing up schedules for bathroom cleaning, and planning the occasional beer and wings party. We’d have hilarious conversations about guys, student-teaching, our third roommate, and the relentless snow. She loved Joni Mitchell and I was obsessed with K.C. and the Sunshine Band.

We didn’t have much in common, really. We got along well because she had a kind heart and an irreverent attitude, two qualities I found appealing. She once talked me into accompanying her to a strip club, where men in skimpy outfits danced provocatively on a five-foot-square “stage” made of cheap plywood.  I was certainly a strip club virgin, and I couldn’t remove the shocked look from my face once the show began. Naturally, Mary thought my expression was priceless, and I didn’t hear the end of it for weeks afterward. My mother doesn’t know this, but Mary and I dared each other to stuff dollar bills into the nether regions of their barely-there thongs. It was odd, it was weird, it was funny, and a little uncomfortable, but it was an experience I’ll never forget.  

I’m not sure why Mary liked me; perhaps she enjoyed being a mentor, and I was like an empty shell waiting to be filled with all the life I hadn’t yet experienced or understood. My innocence, my tendency to follow instead of lead, and my general lack of worldly knowledge put me at risk of screwing up royally. She was only a couple of years older than I, but she had a strong mothering instinct; she handled all the bills and dealt with the landlord. I was immature and mostly clueless about such things. She nurtured and encouraged me, gave me advice and was interested in what I was doing. She seemed to know all the answers.

After she graduated, she chose to remain at 1021 Elmwood Avenue with me and our most recent roommate.  One day, Mary came home in tears. She had found a job as a long-term substitute teacher in one of the local high schools and the kids had been giving her a hard time. Mary was a big girl, but she didn’t have the kind of tough exterior one would need to work with the occasional smart aleck. I thought she was  beautiful, but I don’t think she was comfortable in her curvy body at the time. After four years of working towards her secondary education degree and finishing with honors, she began the process of reinventing herself.  Teaching was in her blood and she was good at it. Ever the optimist she made lemonade out of lemons by working with college students instead.  By that time I had graduated and had moved back home to Westchester, where I found a job teaching junior high school English. Eventually she moved to Hawaii to work at a college as a dorm director; she had found her niche.  

The following year she moved to California to work, again as a dorm director. She was working on her second Masters degree in teaching writing.  I still have a few of the cards she sent me from her home in Arcata. One of them alluded to wanting to experience life as fully as she could. I believe she didn’t see herself growing old. I dismissed it as nonsense, but it wasn’t the first time I had heard her voice her concerns. Because she’d had an older brother who died young, Mary felt a longing for adventure, and a true appreciation for each day in the event a long life would not be her destiny. It was eerily prophetic.

In one of her letters dated 11/6/1984, she asked a question, “Dear ‘Ugly’ (her pet name for me), my thoughts have been with you a lot lately--is there something new? Love, Mary.” I hadn’t yet told her I was pregnant with my first baby.  And when Cliff was born, she was happy for me, giving me the advice and encouragement that was her specialty. She didn’t make a big deal out of the fact that my baby was born with Down syndrome. It didn’t seem to matter.  “You and Ken are lucky to have him, and he’s lucky to have you.” I hope she knew how grateful I felt to hear those words.

 Our all-too-brief friendship remains a jewel in my box of memories.  I can’t explain how it’s possible to love a ghost more and more as I grow older but I do. I especially miss Mary on the days l feel most alone, days where I dwell on what I don’t have, or days I doubt my abilities to write or to teach. I could sure use her advice, though she’d probably just tell me to snap out of it.

She was one of the strongest people I have ever known. But at thirty-one years old, driving her car on a dark, wet and winding California highway, she lost her life. My guardian angel through my college years, Mary had become my ethereal, true guardian angel dressed in white wings.

I still keep in touch with Mary’s sister, Annette. She’s the only connection I have to Mary now. But every so often I sense her big, blond presence and I swear I can hear her voice, “Hey, Ugly, wipe that dirt off your face--it’s not a good look for you.”