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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