April 2005 Issue
Our parent support group has scheduled monthly meetings the first Friday of each month at St. Paul's Lutheran Church, 106 N. Border St., Troy, IL 62294 from 6:30 p.m. - 9:00 p.m. From 55/70, take the Troy/162 exit (#18). Go east on 162 towards Troy. Go 1.3 miles. Turn left on West Clay Street. Parking lot will be on your left.
Enclosed is a brochure of the newly established Down Syndrome Center at the St. Louis Children's Hospital, who kindly provided the photographs of Kamali Mitchell, age 9, during his Clinic appointment.
National Events2005 NDSS National Conference: "Imagine" July 7-10, 2005, The Fairmont Hotel. Chicago, Illinois.
The NDSS National Conference is the country's premier conference on Down syndrome. The 2005 conference, Imagine, will bring together parents, family members, professionals, teens and adults with Down syndrome, and siblings from across the country for education, networking, celebration and much more. This year's conference invites attendees to imagine the possibilities for the Down syndrome community - and how together we can make that potential a reality.
This publication is for information only. Before making any financial decisions, please consult your benefits specialist, financial advisor or attorney.
Also known as 'survivorship life,' second-to-die life insurance is a permanent life insurance policy written on two people together, usually on a husband and wife.
The couple pays one series of premiums. Generally, when the first member of the couple passes away the insurance company does not pay a benefit. Instead, the policy remains in force on the surviving spouse. The policy pays out the full death benefit upon the death of the second insured person, the survivor.
As with any life-insurance policy, second-to-die premiums are primarily a function of 1) the age and health of the parties to be insured, 2) the desired death benefit amount and 3) the period of time over which the insured couple plans to pay premiums. More precisely, the cost of insurance is a function of the probability that, given her/his age and health, the insured person will die at any given point in time and the insurance company will then need to pay out the benefit.
By and large, the premiums for a survivorship policy carrying a certain level of death benefit will be lower than the combined premiums needed to fund two individual policies providing the same total coverage. For instance, aggregate premiums for a $200,000 survivorship policy will be less the premiums required to purchase a $100,000 policy on the husband and another $100,000 on the wife. This is because the probability that both the husband and wife will die tomorrow is lower than the probability that either one of them will.
Yes. As a rule, insurability criteria for survivorship policies are looser than for single life policies. This is particularly helpful when one spouse is older and/or in poorer health than the other. Second-to-die policies can even be issued in situations where one spouse is un-insurable.
Because premiums are lower and eligibility is broader, second-to-die life insurance offers greater leverage per premium dollar than single life policies; in other words, it's the cheapest. Insurance is a low risk investment because, unless it goes bankrupt, the insurance company will pay out the specified death benefit regardless of economic or market performance over the contract life. No matter what, you know how much money your loved one with special needs can rely on for support when you and your spouse are no longer able to assist directly.
Kamali Mitchell has been through more than his share of physical problems in his young life, but he really is the "perfect witness."
Kamali, who will be 10 in July, isn't letting Down syndrome get the best of him. He's a happy and alert young man who is an inspiration to his parents, Mark and Peggy Mitchell of Glen Carbon.
"Kamali means 'perfect' and his middle name (Shaahid) means 'witness'," said Mark Mitchell. "And that's a good name for him. He's never in a bad mood and he's always giving people hugs."
The Mitchell family is pleased to be taking advantage of St. Louis Children's Hospital's new treatment center designed to serve the needs of children with Down syndrome. It serves as a kind of "one-stop shopping" for families that generally need to see a wide assortment of medical specialists.
"The idea is that these children have multiple medical problems and they need multiple specialists," said clinic director Dr. Kathy Grange, a medical geneticist with St. Louis Children's Hospital and associate professor of pediatrics at Washington University School of Medicine. "Their families fell like they're always coming to the hospital."
"This way, we can help coordinate their care and make it easier on the child and the family while we address all their medical needs."
Down syndrome is one of the most common genetic conditions and occurs in one out of every 800 births. At least 1,000 families in the St. Louis area have children with Down syndrome, almost half of whom are treated at St. Louis Children's Hospital.
For file first time, these children are able to see all their doctors and specialists at one time. Complications related to Down syndrome include congenital heart defects, hearing loss, ear infections, eye problems, sleep apnea and thyroid disease.
Down syndrome results from an extra copy of chromosome 21.
"With any of the other chromosomes, it would probably result in a miscarriage," Grange said. "There's really no good way to predict it, but we always stress that it's nothing the parents did to cause it because it's often hard for them to accept."
Kamali Mitchell has experienced much of that, although he's mostly avoided any heart defects.
"He comes here to see an ENT, a gastroenterologist, an eye doctor, a neurologist and a psychologist," said Peggy Mitchell, who is a nurse herself. "That was at least five times per year in the past that he was missing school for doctor's appointments. With this clinic, we can talk to the nurse practitioner (Allison Hobelman) in advance and then come in and see them all in one day."
A newborn with Down syndrome can see up to 10 different specialists in the first year of life. The goal of the center is to provide coordinated and comprehensive medical management for the broad array of health issues in one place at one time.
In a single day, a child visiting the center will have access to physicians and specialists in the following areas: genetics and genetic counseling; cardiology; ear, nose and throat; ophthalmology; developmental pediatrics; audiology; physical and speech therapy; social work; and dietary and nutrition services.
"We've seen lots of newborn babies just since we opened the center (on Jan. 11)," Grange said. "About one in 800 babies is born with Down syndrome. Some of the heart defects can be life-threatening, but many of the other problems can be corrected surgically and the life expectancy now is between 50 and 60 years."
The Mitchells have one older son, 12-year-old Jabari, who attends Collinsville Christian Academy. Kamali goes to Woodland Elementary School in Edwardsville. "They get along like most brothers," Mark Mitchell said with a laugh. "We just want other families to be aware of this place. Sometimes you can feel like you're the only ones. But there is a comfort level here. It's a nice environment and everyone here is so reassuring about everything."
Peggy Mitchell has been on the board of the Down Syndrome Association of Greater St. Louis. That has helped her to become more educated than most about Down syndrome, but there have still been some scary moments.
"Kamali was on seizure medication for about three years," she said. "He's worn glasses for about a year now and he had his right ear drum cave in last summer."
Parenting is a full-time job for anyone, but even more for the parents of Down syndrome children.
"It was devastating at first, of course," Mark said. "But that was the news and we just had to go forward. Our strength comes from being Christians. Sometimes I think if I didn't believe in what God can do, what would I do?"
The Down Syndrome Center was established through collaboration with Washington University School of Medicine and the Down Syndrome Association. In fact, the DSA has designated a parent advocate to assist staff with families' special needs and concerns during visits to the center.
"We are anxious to promote parent involvement from the DSA," Grange said. "We feel that we will need this help if we are to be truly successful."Onward, Crispy Shoulders! An Extraordinary Life with an Extra Chromosome by Mary Haakenson Perry. Excerpted with the permission of the author. Education in Anchor Point, pages 54-58:
With September [of 1955, following our move to Anchor Point] came the beginning of the school year. Johnny started first grade; Robert was in second, and Tim in fourth. The school in Anchor Point was a two-room, two-teacher operation, with one teacher teaching the first four grades; the other had grades five through eight. There was no kindergarten, no high school, and no accommodation for special needs. Tim, Robert and John were welcomed; Jim was turned away, sympathetically but with finality. The teachers had neither the training nor the inclination to admit him. The best my parents could hope for was to take him home and teach him as best they could. And that was that. At the age of ten, Jim had reached the end of his formal education.
This is not to say that all learning ceased. With so many siblings coming up behind him, someone was always learning something in which Jim wanted to participate. Whatever the current lesson was—whether school learning or life experience—Jim was sure to be in the middle of it. His educational experiences in California and Anchorage had given him a love of school that made it doubly hard for him to have to forego it.
In one of Lionel's first commutes home after our move to Anchor Point, he brought down Tim's and Robert's bicycles, which they spent their free time pedaling endlessly and recklessly along the trail that led to the woodlot back of the house. When they wanted even more thrills, they rode the footpath down to Uncle Bert's, which was studded with such pitfalls as tree roots, grassy hummocks, soft mossy spots, and mud holes. When Jim saw what fun the boys had on their bikes, he resolved to learn to ride, too.
Tim, Robert and John got to the point that they almost dreaded seeing Jim coming toward them, pushing one of the old but sturdy bicycles. They knew that one of them and Jim would be going a few more rounds with the bicycle, and somehow, the bike always came out the winner. Throughout that first summer, and the next, and the next, the struggle went on. Grasping the seat, one of the boys would steady the bike, supporting most of Jim's weight as well. After a few feet gravity would prevail, and they would land in a heap. For three long summers, this was the inevitable end to every episode. Then, when everyone but Jim had given up, finally—finally—it happened.
Jim mounts the bike with a look of determination on his face. He clutches the handlebars and puts one foot on a pedal. John holds onto the back of the seat, making sure Jim is securely settled before shoving off. As always, John struggles to keep the bike upright; Jim's feet crank the pedals while his hands try to control handlebars that are suddenly doing a snake dance. The handlebars win again, and the bike crashes into a stump. Down they go in a tangle of bike and boy.
That was a bad fall; Jim comes up with a scrape on his arm and another on his forehead.
John quickly asks, "Are you okay?"
Without answering, Jim struggles to his feet; he yanks the bike free from the stump's roots, plants it firmly back onto the trail, and climbs aboard.
John figures, "Well, if he can keep going, so can I," and they set off again.
The two continue their halting progress down the trail. At first, the scenario looks a rerun of every ride of the past three years. Then comes a slight difference: Jim's hands begin to control the handlebars, instead of vice versa. The bike spends more time on the trail than in the berm. The distance between spills is getting longer. John is even able to let go of the bike seat momentarily. Jim's doing it! He's learning to ride!
Finally the moment comes when John lets go of the seat for the last time. Jim pumps the pedals, aims the only-slightly-wobbly handlebars down the trail, and rides.
One problem still remains: he has not learned to stop. The only way he has ever done that is by falling down or running into a stump. Well, that works; he willingly puts up with a few more bumps for the sheer thrill of riding. Eventually, he does learn to stop in the more generally accepted manner, and even to leap off the bike in mid-flight when necessary, as when lending a helping hand to the Lone Ranger.
Bike riding was a feat that even many of his family members believed he would never master. In this, as with so many other things, Jim believed in himself when almost no one else did, and proved everyone else wrong.
Another skill he saw his siblings accomplish that he was determined to learn, was telling time. John was, again, the teacher; this time his inspiration came to him during church:
With his eyes on the preacher, an expression of rapt attention on his face, John's mind is racing with the grand idea that has just struck him. He knows how to teach Jim to tell time! The cardboard clock—of course! Why hasn't he thought of it before? He wriggles on the seat, impatient to get home and put his theory into practice.
Once back home, John hunts up the cardboard clock on which he and the other boys had practiced their time-telling skills. Jim, always a willing pupil, sits earnestly studying the clock.
"See, you put the big hand on 12, and the little hand on 5. What time is it?"
"No, the little hand tells you the hour. It's 5 o'clock."
"Five o'clock?" Jim's face reflects his puzzlement.
This isn't going nearly as smoothly as it had in John's daydream. Jim recognizes the numbers, but is confused by the different functions of the big and little hands. John perseveres, though, patiently explaining the mysteries of time each day with the cardboard clock. Jim also picks up the clock on his own and studies it. At last the day comes when Jim can correctly name every hour and half-hour when shown on the clock. He begins telling time from the clocks around the house, as well, extremely proud of his new skill. John then expands to the quarter-hour, and finally, after months of work, to five-minute intervals. Jim never learned to count by fives, so his mastery of that level had to be strictly by memorization.
As with many of his skills, when I, then Kenny, and finally Ronny went through the clock-learning stage, Jim's nose was in there, learning everything he could right along with us. By the time he was finished, he could tell time to the minute. His extremely literal grasp on time meant that 9:23 was as different from 9:24 as it was from 4:56. All clocks in the house had to be set to the correct time, which was, of course, the time shown on his wrist watch. Listening to the radio for time checks became a daily ritual, with his watch being reset exactly with the radio several times per day.
An upside to this obsession was that we always knew at least one thing he'd need at Christmas time; he wore out several watchbands every year due to the pulling on and off, stretching, twisting and general mauling they received. With the daily setting, resetting, and over-winding, watches didn't last much longer.
Speaking of time, it often hung heavily on Jim's hands during the school year, especially once we younger kids started school. My parents were determined to help him learn to read. Though they had no training and no one to consult for direction, they were not totally without resources. They had one: an old Dick and Jane primer that the teacher of the younger grades thought she could spare. Well, it was a start. Armed with the primer and a reel-to-reel tape recorder, my parents set out to create a reading program for Jim. They taught him to thread the tape, turn on the machine, and follow along in the book using their recorded lessons. A lesson would go something like this:
"Open your book to page 1. See the 1? See the word at the top? That says 'Look.' Say 'look.' Now turn to page 2." Jim went over each lesson until he memorized the story, then went on to the next.
In my early primary years, I got swept away with the wonder of reading. I wanted Jim to experience that feeling, since I always felt he had gotten a raw deal by being barred from attending school. Sometime during my second or third grade, I took over the taping of Jim's reading lessons (Mom had managed to talk the teacher out of some elderly copies of the next few books in the series once he finished the first one.)
After a stint with the tape recorded lessons, I finally felt confident enough to "go live." One Friday night Jim and I made a date to sit down the next day and begin his "real school." I set out a small chalkboard, chalk, paper and pencil and the primer, and went to bed. Visions of Jim effortlessly reading swirled through my head as I lay trying to fall asleep. With this level of excitement, when I finally did fall asleep I dreamed about our upcoming lesson. Unfortunately, my anticipation was so high that I pulled myself out of my dream, forced myself to wake up, and got up, unable to wait any longer.
With missionary zeal—but no idea what time it was—I trod over to Jim's bed. "Jim," I whispered, "Jim! It's time to start school." That last word was the magic one to Jim's ears. He awoke and allowed me to lead him through the dark, silent, chilly house to our "classroom." I am still amazed that Jim actually got out of bed, and believe it shows the lengths to which he was willing to go in order to participate in school.
That particular teaching session was short-lived, since our mother soon heard us and got out of bed to see what was going on. "You kids go back to bed," she whispered, " It's 3 o'clock in the morning!"
Sadly, I soon found that good intentions were not enough to make my dreams of teaching Jim to read come true. His speech challenges made the phonetic approach unusable, so he learned only words he could recognize by sight. Soon he began encountering words that were too similar in his eyes, such as "family" and "funny;" he was unable to distinguish between them, and we didn't know how to help him past this snag. This effectively ended his instruction in reading, though for several more years he continued to pull out his books and read them for the sheer enjoyment of the exercise.
The frustration and helplessness I felt in failing to teach Jim to read led directly to my decision to become a special education teacher. Though I didn't know, at the age of nine, if such a field existed, I was determined to find out. Even at my tender age I was aware of the unfairness of the treatment Jim received from the school system. I could see that Jim was capable of learning; why couldn't others see it? I resolved that my life's work would be helping kids like Jim receive schooling that met their needs and prepared them for productive lives. Fortunately, I had excellent role models in my parents. They had no guidance for teaching academic skills to Jim, but they needed no guidance to teach life skills. And, in the final analysis, those skills served Jim best.
Though Jim never became what anyone would term "a reader," he picked up—chiefly through his own initiative and persistence—a number of sight words that were meaningful to him. Among these were the names of the months and days of the week, which he learned thanks to his obsession with the calendar. With a family of nine people, birthdays came around frequently. This may have been the source of his original interest, but he soon took calendar watching to a whole new level.
At the beginning of each year, Jim thumbed through the calendar, studying each month and locating the birthdays of all family members, all the major holidays, and any other dates that were important for him. He then regaled us with much more information than we wanted about each date ("My birthday is May 9—it's on Saturday.") He became our infallible calendar expert. Once he had gone through and located all the relevant data, it remained locked in his mind for the rest of the year. If we needed to know anything about a particular date, we found it just as quick—and accurate—to ask Jim as to look it up on the calendar: "Hey, Jim—when's Mom's birthday?"
"July first—Friday; she's gonna be 46," he would fire back without missing a beat. It was as quick and uncomplicated as that. I think he often wondered what was wrong with us that we could never remember something so ridiculously simple.
"Hang on, Robert! Don't let her get away!"
Clutching a knot at the end of the rope, Robert flew through the air like a long, oddly shaped satellite around the small, feisty Holstein attached to the other end. But he hung on. A small cluster of men and boys swarmed around, trying to shoo the cow up the ramp into the trailer that would transport her to our place, her new home. She was just as determined to escape the whole scene. Eventually the human element prevailed, and the cow stood unhappily in the trailer, huffing noisily through her nose.
So, three years following our move to Anchor Point, our family became cattle wranglers. The former owners had named the little cow "Mary," which I found highly flattering. My mother took exception to having her daughter answering to the same name as the family bovine, though, so we wracked our singularly uncreative brains and came up with a new name: Bossy.
Until the advent of Bossy, our milk was of the powdered variety that had to be mixed with water. Powdered milk of that era was prone to clumping in large, hard lumps, which my little brother Ronny loved. He would snitch several of these lumps from Mom for a snack, which he shared with the family cat, Tommy. I had quite an opposite reaction to those lumps. Even when they were mixed with water, I felt the resultant concoction bore a revolting dissimilarity to the real thing, so I welcomed the arrival of the cow.
Bossy became the sole source of milk for our family and several of our neighbors. In the course of time she was replaced by Popeye and, finally, by Daisy. These three, though I feel sure they never set hoof inside a school building, taught Jim lessons that served him well throughout his life.
Support of a milk cow in Alaska requires a major commitment of money. Much of the year all feed has to be bought and provided by the cow's owners. A barn must be built to store the feed, as well as provide a place to milk the cow and shelter her during the bitterly cold days of winter. And, as is the case with milk cow owners everywhere, there is a time commitment; we found it necessary to adhere to a fairly rigid schedule. My parents felt both the expense and time were worthwhile investments. They believed that responsibility was good for kids, and that upkeep of a cow would help make us better people.
We each played a part in cow care, based on our ages and abilities. For several years, Tim, Robert and John took turns with the milking, feeding and watering chores. The rest of us kept the cow groomed and supervised her grazing during the summer.
My parents knew that the short Alaskan summer, with its abundant grass for grazing, would soon give way to a long, cold winter, when deep snows covered all trace of self-service forage. To supplement the expensive hay and grain we needed to stock for the winter, Dad planted several acres of oats in the newly cleared field we still referred to as "the woodlot." This also fulfilled the homesteading requirement to have at least five acres of land under cultivation. Each fall we harvested the crop and packed it into our homemade silo for winter cow feed.
Since the woodlot lay a mere hundred yards or so behind the barnyard, it was a simple thing for Bossy to nip down the trail through the woods and gorge herself on the tender shoots of oats. Like many humans, once she went on a binge she didn't know when to stop. But unlike humans, her excesses put her in danger of bloating, which could have killed her.
As this would seriously impact the amount of milk she produced, Jim, Kenny, Ronny and I were charged each summer with the responsibility of making sure Bossy stayed out of the oats. My two younger brothers and I sometimes got caught up in games and forgot about the cow, but Jim was faithful in his vigilance. More often than I care to admit, Jim reminded us of our responsibilities when he came running up the woodlot trail, bellowing that Bossy was in the oats.
When school started, many of the responsibilities we shared during the summer fell to Jim, since he was the one left at home. This was fine with him. He reveled in his jobs, and guarded them jealously. Somehow, within a very few years, he managed to edge his brothers out of the milking chores (not that they put up too much of a struggle.) The structure necessary to keep a cow on a good schedule was just what Jim craved. Instead of heading out to milk "early" in the morning and "in the evening" he assigned times: 6:00 in the morning and 6:00 in the evening.
To Jim, these times were not negotiable. For the morning milking, he got himself up and out to the barn. Many a morning before anyone else was stirring, Jim arose, milked the cow, then strained and put the milk away. He was equally dedicated to the evening milking, though there were more pitfalls in his path. These pitfalls usually took the form of one or more of his family members, especially if we all were away from home when the evening milking time drew near. Along about 4:30 Jim would begin to fidget. After a half-hour or so of silent but continual clock-watching, he hunted up Dad from whatever he was doing, and gave him a gentle reminder: "Pa, it's 5:16." If Dad didn't move quite as fast as Jim thought he should, he became a little more direct: "I gotta go home and milk the cow." If even this failed to get folks moving, he began to get irritated. He paced the floor (purposely remaining within eye- and earshot of Dad), and mumbled to himself: "It's time to go home...I gotta milk the cow...it's 5:22...Pa's not coming...it's late...it's 5:24..." Finally Dad threw up his hands in defeat, home we went, and the cow got milked at the appointed hour.
Jim's connection with animals sometimes transcended our understanding. Several times his insistence that we go home was not because of milking time. Instead, he stated firmly, "Bossy's loose." Receiving a scoffing reply or an unbelieving glance, he kept it up: "We gotta go home. The cow's gone." Sure enough, when we got home, Bossy was nowhere around. We quickly fanned out to search and, luckily, always managed to find her, enjoying a few moments of illicit freedom in the garden or munching fern roots somewhere in the woods.
Jim inspired a trust in our livestock that was truly special. Our last cow, Daisy, had a bull calf which I believe we named Buster. (In fact, I believe we named all of our bull calves Buster.) This particular calf played a butting game with our youngest brother, Ronny, who was about nineteen at the time. Ronny would push the calf's forehead, the calf would push back, dance away, then come back and butt against Ron's hands again. They both enjoyed the game at first. Ronny, lean and muscular from four years of high school wrestling, had a kind of macho thing going, pitting his strength against the growing Buster.
However, as Buster entered puberty, he began to resent this aggravating human who still wanted to push on his head. He soon transferred his annoyance to just about anybody who ventured near, attempting to charge anyone who tried to enter the barnyard. Anyone, that is, except Jim. When Buster snorted and waved his head threateningly, Jim calmly approached him, cuffed him affectionately on the neck, and told him, "Now, Calfie, cut that out." Belligerent Buster, suddenly transformed to meek Calfie, followed Jim like a puppy dog, a goofy look of adoration on his face.
Bossy, and her sisters that succeeded her, did more for Jim than just give him a schedule and a reason to tell time. We put the milk up in glass gallon-size containers. These were obtained by the simple expedient of buying all possible items-from mayonnaise and pickles to peanut butter-in gallon jars and reusing them as milk jugs. Our customers' dairy needs varied by the size of their families, so we planned accordingly. For instance, if Family A needed one gallon twice a week, and Family B got two gallons three times per week, we marked and set aside the appropriate amount for each customer. We operated a cash business—$1 per gallon. Jim became proficient in dealing with customers. Sometimes when we were all in school, if Mom had to run an errand, she would take Jim to the cooler and point out the jars:
"If Blanche comes, give her this one. If Ruth comes, she gets these two."
Jim thrived on this sort of responsibility. He greeted customers, handed over the correct jars of milk, took the money, and put it away carefully in the cupboard, ready to turn over to Mom when she returned.
The cow-care experience also helped Jim cultivate an ability to solve problems, as a story told by our friend Wallace, illustrates. As Wallace and his wife, Mary, sat visiting with my parents, through the window they could see Bossy's half-grown calf, Beauty. She was tethered to a running line strung between two trees in the yard. Soon the adults realized that poor Beauty couldn't move. The rope attaching her to the running line was snarled around the tree trunk, roots, branches and her legs. She looked as if she'd tried to play a complicated game of "Cat's Cradle" with the tree.
Lionel called, "Jim, go untangle the calf.". As Jim unhesitatingly set off on his mission, Wallace wondered to himself, "Why is Lionel sending his retarded son on a job like this? He's got all those other big boys who could handle it much easier." As a Texan, Wallace had worked with cattle, and knew the strength and skill it took to throw a calf the size of Beauty, then hold it down while untangling the rope. He seriously doubted that Jim could manage it all.
His ready sympathy stirred, he sat poised and ready to run to Jim's assistance if the job proved too difficult. To his surprise, Jim made no attempt to throw the calf. Walking to the running line, he unclipped the end of the rope. Carefully he threaded it back around calf and tree, legs and roots, retracing its path until it again hung free. He reclipped the rope's free end back to the running line, patted Beauty on the rump, and the job was complete.
"Wow," thought Wallace, "And we consider him retarded."
Despite Jim's capacity for solving such everyday problems, mastery of basic academic subjects continued to elude him. We tried unsuccessfully for years to help Jim grasp the concept of addition. He could count objects, though he began to get confused if there were more than about twelve. On a good day he could rote count to thirty. With no training, we were unable to get across to him the concept of adding more to a number to make another number.
A few years after Bossy joined the family, our parents acquired Jim's next set of unorthodox teaching assistants, namely seven Rhode Island Red hens. The septet divided naturally into three distinct groups. The five egg producers we named Short Wings, Curly, Speckles, Moose and Gladys (so named because she sounded like our aunt Gladys.) A sick hen who slept most of her abbreviated life away inherited the name Alice from Mom's older sister. Aunt Alice was notorious for falling asleep in the middle of a conversation or just about any activity that put her into a sitting position. Finally, there was Bossy. Not the cow—the chicken. (Did I mention our lack of originality in the naming department?) Bossy-the-chicken apparently thought she was a rooster. She strutted around, refused to lay eggs, and ruled with pecks and threatening clucks, which thoroughly cowed her coop mates.
By the time the chickens arrived on the scene, much of Jim's attention was taken up with the cow, so he didn't, at first, have a great deal to do with their day-to-day care. That task fell to me with assistance from my younger brothers, because I discovered an unexpected affinity for the silly creatures (the chickens—not the brothers).
Until we acquired our chickens, I mistakenly believed that eggs were always laid in the dead of night. In books I had read, people always went out to the hen house early in the morning to collect the eggs. Apparently, those book people didn't have the fascination with the egg-laying process that we kids did. We knew to the second when each egg was laid since we usually were lying in wait to grab it as soon as it popped out of the chicken.
We brought the fresh eggs into the house and put them on the counter to be washed before boxing them up and putting them away. It was fun to bring them in throughout the day, and keep track of how many we got.
Jim got as big a kick as any of us out of bringing in the eggs. I credit those chickens and our simple egg counting routine for Jim's eventual understanding of basic addition.
If we had collected two eggs earlier in the day, and he came in with three more, he would line them up carefully on the counter, and count them all. Then he'd announce to the world at large, "We had two eggs; we got three more. Five eggs today!" Counting and adding those eggs gave him a real, concrete way to use and understand a previously unfathomable skill.
His grasp of mathematics never advanced beyond the simplest of addition and counting; for instance, money's value remained a mystery. He recognized the various coin and bill denominations, but saw no difference in value between one dollar and one hundred, or a penny and a quarter.
His lack of money sense would have worried us more, except that all his money dealings took place either at home or within our small community. We knew we could trust the local folks to treat Jim with honesty and respect regardless of his understanding.
We used to have movies in the community hall for an admission of fifty cents. Years later, inflation pushed the price up to a dollar. The first time that Jim wanted to attend the movie after the increase, Mom tried to prepare him for the change in admission price. To Jim, such a change seemed frivolous, and therefore he refused to believe it. Each time she told him it would be a dollar, he stubbornly shook his head and insisted, "Fifty cents."
She gave him a dollar anyway, and he blithely went off to the show. When he got home, Mom asked him, "How much did it cost to get into the movie?"
"Fifty cents," he said smugly.
"Did they give you two quarters back?" she queried.
"They forgot!" he replied laughing, obviously feeling the joke was on them.
A solitary figure stood at the bus stop in the blackness of a winter morning, eyes and ears straining. He looked back toward the trail. "Where are the kids?" he muttered. "They're gonna be late." His eyes swung around to peer up the road. He was watching for lights at the corner just up the road a ways. Generally, few cars frequented the road this time of the morning, so any lights he spied would probably be the bus.
What's that? He thinks it is...he's pretty sure...yes! Lights!
"BUS!" Jim bawled at the top of his lungs.
His siblings, hearing the dreaded yell, stepped up the pace from their various points along the quarter-mile-long trail. I, as usual, was bringing up the rear. This was not entirely my fault: my mother, for some obscure reason, was determined to send her only daughter to school each day looking like a girl. This added precious minutes to my morning routine while she primped and fussed over me. I then spent the next six or seven hours undoing her handiwork.
I galloped down the dark, slippery driveway, my carefully curled and beribboned hair stuffed up into the hood of my parka. The front skirt of my lovingly homemade dress with its starched frills was crammed into my snow pants. The back half hung out, flapping as I ran. For the hundredth time I wished I could be like my friend Chris. Chris had beautiful long black braids and wore overalls with flannel shirts. She probably got dressed and to the bus every day on time.
Jim's bellowing call continued with a regularity that created a cadence for my running feet: "BUS!" (two, three, four, five, six, seven, eight); "BUS!" (two, three, four...). I was slightly comforted by the sound of his yells, because once the bus stopped at the driveway, he'd quit calling.
Uh-oh-silence. I skidded around the final corner just in time to see the last of my school-bound brothers disappearing up the bus steps. Well, technically, I was not late, since I was within sight of the bus before everyone else was seated. Panting, I scooted onto the bus and flung myself into the seat beside Chris of the exotic braids and envied overalls.
As the bus pulled away from our stop, I looked back, and in the glow of the bus's taillights I saw the shadowy figure of Jim standing alone, watching us leave. Jim, our bus early-warning system. Jim, who faithfully saw us off each morning and was often the only one to get to the bus stop on time. Jim, who would have walked to the road naked and barefoot through the snow, for a chance to ride the bus. But he couldn't ride, because "people like him" were not welcome in school.The Deprivation Shelf by Linda Moran. Down Syndrome News, Vol. 24, No. 4, Summer 2004, the Newsletter of the National Down Syndrome Congress. Reprinted with the permission of the author. Copyright © 2004, Linda E. Moran. All rights reserved.
"Don't worry. He won't be in diapers when he enters high school." We've all heard this advice as it pertains to typical kids. It's intended to help us relax—and it's true. But what about our children with Down syndrome? Our son, David, took so long to train that he threw this advice into question. If you have or work with a child with DS, you know what it means to adjust expectations.
Although many children with DS are trained completely by age five, the range of what's normal is quite broad—some say anywhere between three and 11. Those numbers gave us some comfort, until David turned 11 and there was still no end in sight.
We had tried the standard method, suggested by a specialist, of putting him on a schedule. David likes schedules and memorizes his school schedule each year. But, starting in kindergarten, whenever we tried to put him on a schedule for using the bathroom, he would rebel, and withhold his urine all day until he went to sleep. Since our doctor advised this was not good for David's health, we had to quickly give up.
Over the years, we read books, tried various approaches, and consulted psychology, special education and medical experts. We were perplexed, and spent long months doing nothing at all. Some experts felt we had started too late. Others felt that David was just "not ready." But what does that mean? Looking back, perhaps David was just not ready to give up control. That condition could reinforce itself forever.
Now he was 11, had outgrown night-time pull-ups, and was wearing adult diapers. The school psychologist and special education teacher were befuddled. And we, his parents, were exhausted and resigned. The school called in a behaviorist, but we didn't have much hope. We were in for a surprise.
Jacqueline Dubil-Craig, with her master's degree in Applied Psychology, and a background working with children with autism, was, it turned out, just what the doctor ordered. Dubil-Craig concurred with us that this was not a pottying issue anymore. From our point of view, David's power struggle with us was akin to that of a teenage girl with an eating disorder.
|The Deprivation Shelf|
According to Dubil-Craig, it all came down to reinforcers. "I look at everything in terms of reinforcement," said Dubil-Craig. "The highest reinforcer is the control he is exerting over you." She explained that all the positive reinforcers we had tried (stickers, favorite foods and his interest in schedules); and all the negative reinforcers we had tried, (no computer use in school), had less meaning to him than the power he was holding over everyone.
What she prescribed was so simple. It seemed, at the surface, to be something we had already tried, but we actually had not. She told us we were to show no interest in whether David used the bathroom. On the other hand, his toys would care deeply about it. All his favorite toys were to climb up on a high shelf, which would come to be known as the deprivation shelf. Each time he wanted a belonging, the toy would inform him (in my flat voice) that it would be happy to come down after he pees. For three weeks, those toys didn't budge, just as Dubil-Craig had predicted.
As we were instructed, never once did we, his parents or siblings, say a word about the toys or the bathroom. Then one day David got fed up. He wanted his favorite toy, a Madeline doll. We heard a flush, and then David emerged from the bathroom with a grin and reported, "I peed." Down came the Madeline doll, with no words of praise.
The power struggle had now shifted to David and the Madeline doll. We were out of the loop. But what was next? When would the doll return to the shelf each time? Could we direct David to "go" before a long car trip? We made it up as we went along, but stayed strict about one thing—we ascribed all enthusiasm and control to his Madeline doll. She was in charge now. Sometimes we would have to go behind closed doors to shout for joy.
After about six weeks, we sensed it was time for underwear. In David's mind, pull-ups get changed when wet. Since his pull-up was never wet, he would wear it until the elastic wore out. One day his gym teacher noticed a wad of bulk down around his knees inside his pants. It was an old, stretched out, dry pull-up.
Would he do any better changing underwear every day? We solved that problem with a laundry marker and the day of the week printed on each pair of underwear. Now, David was happy to match the correct underwear to the correct day of the week. It was four weeks short of his 12th birthday, and six weeks since the deprivation shelf was created. David was now in underwear, even at night. We extinguished the shelf.
In the final analysis, this method capitalized on David's social strength by creating a relationship between himself and a doll, and then later, between David and his underwear. We would say, "Your underwear wants to stay clean and dry." It was never, "We want your underwear to stay clean and dry." The wording is subtle, but it worked. The focus now was away from his relationship with us. "By acting as though you did not care whether he used the bathroom or not, his control reinforcer was removed," says Dubil-Craig. "Suddenly, depriving him of his favorite toy became meaningful again."
Today, upon reflection, what finally worked was both the easiest and the hardest. It was easiest because we didn't have to go with him or be controlled by a schedule. It was the hardest because we had to stifle all enthusiasm. Had we shown excitement, we would have unwittingly recharged the power struggle. According to Kim Casey, M.S., Special Ed., all children, regardless of age or disability, need to have a say in their own lives. "If we constantly are battling with our children to gain control," says Casey, "then everyone loses and nobody really has any power. If you have the last say in every battle the child does not learn from the situation." David now was enjoying having control over his own toileting.
Now that David is trained, he still holds it for a long time. We hope to proceed cautiously with shifting him to a reasonable schedule. For the moment, trying to convince him to go before a long trip, means he holds it even longer. We have had to leave him alone and trust him to know what he needs - that is appropriate for an adolescent. Some things about David are quite on target.
We may never know whether David could have trained years earlier than he did. However, his lack of fine motor coordination plays a role in his ability to use the bathroom independently. According to Marlene Targ Brill, author of Keys to Parenting a Child with Down's Syndrome, physical readiness for toileting includes fine motor skills. Even at age 12, he needs to wear elastic waist pants with no zipper. Had he trained earlier, he would have been dependent on our help. Given his strong dose of stubbornness, coupled with our preoccupation with three younger children, it's possible the timing could not have been different.
As is often true with our wondrous children, the question of whether the ending of this story is neat and tidy is a matter of perception. When it comes to David doing his "number two," he awakens at night, changes his own dirty underwear, finds a plastic bag, carefully wraps up the mess, and leaves it in the kitchen for us to find in the morning. He awakens no one. Honestly, I can't complain.Editor's note: Linda Moran lives with her husband and four children in Ridgewood, NJ. She writes about advocacy, disabilities, parenting, and self-help and was delighted to report that just a few weeks after writing this article, David began using the toilet for his "number two."