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.