Source: Seth’s Blog
The year after I was born, in 1958, Dr. Lejuene identified Down syndrome as a chromosomal condition. There are three types of Down syndrome, the most common being Trisomy 21, so that is what I define here.
There is an error in cell division called “nondisjunction.” The result is that an embryo generates three copies of chromosome 21 instead of two. Before or during conception, a pair of the 21st chromosomes in the sperm or egg fails to separate. Then the extra chromosome replicates in every cell in the body. The result is Trisomy 21, or Down syndrome.
The name Down syndrome comes from Dr. John Langdon Down, (I include the link so show how far we have come) who determined the characteristics of the syndrome in 1866. But it was Dr. Lejeune who figured linked it to the 21st chromosome.
One in 700
When William was born in 1989, the staff in the hospital didn’t know what to do or how to react. One in 700 women in the United States have children with Down syndrome, and I was that one. At the time, there was only one other person William’s age with Down syndrome in my town, and he had been born in another hospital.
Women around me were popping out pink baby girls and boys with healthy lungs that seemed to grow during their short overnight stays. People from my birthing class bounced in and out. One mother, concerned that her daughter’s ears might stick out too much, she taped them with Scotch tape.
Finally, I told William’s pediatrician that I thought he had Down syndrome. She raised her eyes almost in relief that I was the one who said it first — as if I had opened the window and let in the fresh air. I never understood her hesitation, and I never asked. She turned out to be instrumental in William’s extensive medical life that followed.
Down syndrome, Doctors, nurses, colleagues, and friends
I kept the doctors, nurses, friends, co-workers, and complete strangers’ actions, and comments regarding Down syndrome to myself because they were all good people, they just didn’t know what to do. Later, I took on the responsibility of educating people about Down syndrome, but in the early days of his life, I didn’t know how to react. Everything was so new to me. With time, the logistics of Down syndrome became less important as William developed into the man he is today. But in the beginning, when no one knew what to say, some education would have helped.
Those who should know
I can’t fully understand why a birthing center wouldn’t be well-versed about babies with Down syndrome. There was a funereal vibe in the birthing center when William was born, and there shouldn’t have been. I hope and assume that things have changed. I hope that when women who go for their six-week post check-up that their obstetrician doesn’t meet them with the comment: we won’t let this happen again.
Misinformed good intentions
People’s lives are rarely touched by Down syndrome until someone who has it becomes a part of their lives. I can understand why a friend and co-worker might say,
- I heard that the drinking water where you work is contaminated. Do you think that was it?
- Or I am so sorry he is suffering
- Or I explained to my son the William has a disease
It takes time to understand that Down syndrome is not a disease, that people don’t suffer from it, that you cannot catch it, or get it from contaminated food or water. It is a genetic anomaly. Scientists do not know what causes nondisjunction, and there is no research supporting that environmental factors have anything to do with it. It is genetic, but not hereditary. It is a chance event.
Special Education Expert?
When you have a child with Down syndrome, you become an expert. Especially when it comes to special education. The problem is that you aren’t. You never are. I had guidance, but just as with everything in life ultimately, everything is up to you. I had to believe in myself enough to trust that I knew what was right for William. Believing in myself has never been my forte. I had to make decisions about William, for William. No one could make them for me. I was in charge, and I didn’t trust myself.
Outgrowing the system
Pierce School outgrew William. Everyone was running out of ideas about what to do with William during the day. At this time, the school district had just started a life skills special education program for people like William. It was a self-contained program that would focus on his specific needs. I decided to send him there. This meant leaving his people, leaving his town, and community to travel to a school in a town twenty minutes away. As I tell this, it feels like my biggest mistake, but living it, I had no choice. William’s friends were growing up, playing soccer and baseball, doing math, science, reading their writing at author’s teas, getting grades, riding their bikes and jumping off the dock at the lake. William was not.
Why Can’t Home be a Special Education Model?
At home he was. At home, he was just William. He played and fought with his sisters, he did what we did, went where we went. He was an observer, but he had options to do whatever we did. Mostly, he loved to look at books listen to music, and ride his bike.
I wanted one thing but got another. I wanted William to be included just like any other kid. The problem was that he wasn’t just like any other kid.
What special education cannot be
At school, I wanted what he couldn’t have. I wanted him to be a member of his class, to be in the band, to run around at recess. I wanted the other kids to be his mentors. But for that to happen someone had to initiate that and foster that. At home, I did that for him. I took him on bike rides, on walks into town, to the library to places where he could interact with the world. At school, an aide did that. A teacher. A special educator. Not exactly someone a ten-year-old wants to hang with.
The time Factor
William doesn’t move at the same pace as other people do. When you’re with William, you need time. Time to understand what he is trying to say. Time to walk slowly. Time to stop and talk. Time to spend hours in one spot with his bike spinning out. When you take the time, it’s a lot of fun. He’s funny, silly and full of joy. But people don’t have time. People need to move on to the next thing, the next class, the thing that comes after the bell rings.
Quitting the Special Education System
For the years that William was in the life skills program, I struggled to find a balance for him. I never found it. Four years later, I threw in the towel and called it quits.
There must have been 12 people at the meeting. I thought the meeting was about sending William back to his neighborhood school. William was transitioning into middle school, and I had discussed this at length with the principal there. I thought he was on our side. I was confident that this would work.
When I proposed the plan to move William to the Great Brook School, without so much as a debate, they said no. I was the only one at the table who supported the idea. The principal, who had offered me so much support said flatly: we cannot provide William with the special education services that he needs.
“Then he won’t go to public school anymore.” The words were out of my mouth before I knew who said them. If you cannot provide William with an education at the school next to his house, then I will figure out a way to educate him myself. The decision made itself for me. I had a full-time job at the time and no plan.
Special Education Saviors
I am not sure if Jim was at the meeting or not, but he was the first person to volunteer to take Will until I figured something out. Jim had advised me to put the cart before the horse if I wanted to get what William needed. Get William into a program, prove it’s the best, go back to the district and state our case. At the moment, I wasn’t sure what I was going to do, but I knew that William wasn’t going to go to school the next day.
It was late in the year when I made this move, and another savior who was finishing her special education degree jumped on the bandwagon. She became William’s teacher for the remainder of the school year. The question of how to pay her to do this resolved itself when yet another savior volunteered to fund his education for however long it was necessary.
Time and guts
Becoming an expert takes time and guts. It takes a lot of support too. But it’s not about being an expert because I am by no means that. It’s about making decisions and believing in yourself enough to know that you have made the right one.
The Pierce School Community
Joan Schnare was the teaching principal at the Pierce School in Bennington, NH. She had the thickest New Hampshire accent of anyone that I ever knew. It was as if Joan spoke a different language. But she spoke the language of Will as well. That woman knew what she was doing. She embodied the Pierce School community, and she believed that William embodied its spirit. I don’t know that, but she sure knew how to make him feel that way. She set the foundation for what education could be for William, and after he had left Pierce School, it was a challenge to hold the system to that high standard.
Every time I saw Joan, she mentioned Horse Power . (It took a while for me to realize what “hoss pa” was until it caught up to the conversation that surrounded it.) William had started Horse Power when he was three. Horse Power was a part of the Pony Farm in Temple, New Hampshire. To say that it is a “therapeutic program ” diminishes what it is. Horse Power meets people’s needs spiritually, emotionally, psychically, and physically. The Pony Farm, where the Horse Power program lives, is vast and beautiful and full of magnificent stately horses of all shapes, colors, and temperaments. Everyone moves to the smell and the rhythm of the place. William went there religiously once a week. His tiny body astride Cougar, the oldest horse on the farm.
The Field Trip
For Joan, Horse Power embodied community, which was sacred to her. One day she announced, we are going to take the first grade to Horse Power to watch William ride! And they did. I have a photo of it. All of the first graders, who were lucky enough to have William in their class, trooped off to The Pony Farm to see how the other half lived.
The dangly tooth and genuine concern
It wasn’t any wonder that William’s class invested themselves in his well-being. Joan fostered this in the spirit of the Pierce School. One day, I got a phone call from William’s aide — “D.” I lived close to the school, and she asked if she could bring William home because he had a loose tooth that was dangling by a thread. She would have pulled it out herself, but he wouldn’t let her. He was upset, she told me, so I told her to bring him home, and I would take it from there.
Once I removed the dangly tooth, and William was calm, I told her that she might as well leave William home with me as the school day was coming to a close.
“Oh no,” she said warily. “You don’t understand. The kids need to know that he is okay.” Apparently, the Pierce School had shut down. None of them had ever seen William that upset before, and there was a genuine concern. “If I don’t take him back, the kids won’t know that he’s okay.”
Eventually, William outgrew the Pierce School, or it outgrew him. He was not a stereotypical reader, mathematician, or historian. He wasn’t a sit at your desk and learn the three R’s type of guy.
Eighteen Years Later
Eighteen years later, I decided to throw a party for all of the people who had been an integral part of William’ life. Eighteen years later, Joan, D, and a group of his first-grade buddies whose graduation was just months away, were among the 100 who came to celebrate.
Continuing The Spirit of Community
All those years ago, I wondered where Will would land when he became an adult. Would he ever have the sense of community that Joan Schnare fostered at the Pierce School? Would there be another “D” to help him when things got tough? I carried the essence of the Pierce School with me as a foundation of what he could and should have throughout his life.
As I write this ten years later, William is 28 years old. He lives at Plowshare Farm, nestled on the opposite side of the mountain from Horsepower. Like the Pony Farm, Plowshare hold a magical spirit of community.
Joan would be happy.
Kate and William, who are only a year apart, did the army crawl. William would crook one arm in front of himself and heave himself up and over it, like a soldier crawling under a barbed wire fence. Soon Kate followed suit. However, she soon learned that crawling on her hands and knees was much faster and more efficient. Kate started to walk at around the time that William graduated to his scootching method to propel himself. This involved sitting cross-legged, and much like he did with his army crawl, he would move his legs forward, scooch up, and propel himself forward on his butt. Every step of William’s development was pronounced and unique.
When children learn to walk, one day they pull themselves up, then they cruise the furniture, then they take a step, then they walk. Kate didn’t have her older brother’s lead to follow when she learned to walk, so she studied walking carefully. She didn’t bother with cruising the furniture, she just stood up one day in the middle of the room and started to walk. Claire, who was third in line, took the conventional route in the walking process. She met the challenge head on, suffered some bruises and was roller blading as soon as she could. It took William years. We would prop him up, and we bought one of those bouncy things that you hang in the doorway, we moved his legs, he did physical therapy. Nada.
During this time, I bought William a Fisher Price record player. He spent hours wearing grooves into vinyl and driving us to near insanity playing the same story or song. Eventually, the record broke, or it was so worn that there were no grooves for the needle to slip into. We had a collection of LPS that we were more than willing to subject to William’s destruction. I also found sets of 45’s at yard sales with Disney stories on them. One of his favorite 45’s was Sleeping Beauty with mighty Maleficent, the young boy prince, and Aurora. He listened to this so much that Kate memorized the words and at three years old could recite the story.
The Boy was Prince
Gradually, the record was so scratched, it got caught in the line introducing the boy prince. When William was preoccupied with something else it would get stuck on “the boy was Prince. . . The boy was Prince. . . The boy was Prince. . . The boy was Prince. . . The boy was Prince. . . The boy was Prince. . . The boy was Prince. . . We got so used to this that often we didn’t hear it, or one of us would yell up the stairs WIIILLL fix the record! He would lift up his butt in his cross-legged position and land with such force that the story would continue until it reached the next skip in the record.
William was the scooch master. He scooched and shimmied across the kitchen floor at a fierce clip. His progress toward walking was slow, but he learned some tricks along the way. Eventually, he could bounce the needle to the track that he wanted to hear.
William was in kindergarten when he started to walk, as long as the surfaces were smooth and flat. He may not have been the first on the playground at recess, but he sure knew how to skip a beat.
Barbie or Ken?
When I read blogs or stories about people with Down syndrome, I usually read about ballet dancers, Little Miss Americas, Little League Wonders – the plastic Barbies and Kens of the Down syndrome community. These are adults who live independently, go to college, get married, drive, and star on TV shows.
Just your average Joe
Does anyone write about the normal people with Down syndrome? Just the average guy who hates to hike, loves to downhill ski, loves show tunes, loves being on stage, acts inappropriately at times, doesn’t read or write, and speaks a different language that only family members and close friends understand?
The question of functionality
It is important that people know that people with Down syndrome can do what other people can do. The publicity is educational. However, not everyone has to be a superstar. Some of us who never make it to the top are still great.
A typical question people ask me when they are curious about William is at what level will he, or does he function? What degree of Down syndrome does he have? Is he high functioning? Will he ever be able to . . .
Understanding on one level
I get it. I get that people want to normalize something that they don’t understand. Why is it is so hard for me just to say I can’t answer that question? If someone asked you on what level does your child function, what would you say? Would you reel off his or her IQ, bring out his or her Little League medals, show them the latest craft he or she made?
A retrospective answer
My initial response to the functionality question is usually inappropriate and sometimes sarcastic: well, he doesn’t read or write if that is what you’re asking. I don’t understand the question.
My retrospective answer is that he functions with a terrific sense of humor, and sensitivity toward others. William thinks he is a comedian. He’s a member of the Temple Band. He loves to tease people. He can eat a box of Cheerios in one sitting. He is set in his ways. William would prefer not to wash the dishes, and he and his 92-year-old grandfather are tied at the hip.
The Devil and Daniel Webster
Once a friend took William to see the mini-opera, The Devil and Daniel Webster, in which his father was singing. My friend got there early enough to get a front row seat. Then as he started walking forward, a polite usher said, would it be better if you sat back here? No thank you, Jim said, the front row is just fine. Then he proceeded to the front row with William. Of course, William was riveted once the orchestra struck its first chord. After the performance, the usher sought out William and Jim and apologized profusely.
Sometimes it is not so easy to give a gentle response when faced with the question of Will’s functionality. Perhaps my best response would be would you like to take him to the opera to find out?
The Roommate with Rocker Bottom Feet
William and I moved from room to room on 6E at Boston Children’s Hospital. We had many roommates. I only remember one. He was the same age as William, about one-month-old, and he had rocker bottom feet. Now, my guess is that he had Edward’s Syndrome. This is the second (Down syndrome being the first) most common autosomal trisomy among live-born children.
Not listening to the cry
A thin privacy curtain dangling from a strip of metal hooks separated us from him. We had the window side this time, with all of the sunlight and a spectacular view of the city. Our roommate lay in the shadow of our side of the room. Alone, he cried all of the time. His cry was telling me something, but I wasn’t listening.
What a shame the mother of this child wasn’t with him. How can this mother not be here for her baby? I said this. Me, who had planned the date of William’s birth so that it would fall at the end of midwinter break so that I could take a paid maternity leave for the next six months.
The curtain between us opened in a cacophonous clatter that swayed against the wall. The light from my side of the room revealed the nurse at the end of her shift attending to the baby with the rocker bottom feet. How dare you, she didn’t say, but her glare stabbed my words.
A lack of Humility
Then she told me why the baby with the rocker bottom feet was alone. I don’t know where my compassion for the single mother of this child was. A mother who had two other children she could not afford to leave at home. Where was my empathy for a woman who couldn’t take time off from her job, which may or may not have been enough to pay the rent that month? My lack of humility rendered me speechless for a long time – this is the first time I have spoken of it.
I never met his mother. I don’t know what happened to the baby with rocker bottom feet — if he made it or not. He taught me a lesson — one that I should adhere to every day as I stumble through my life.
Unearthing the star
I still have the star. It’s made of red felt. It’s layered with yellow stars sprinkled with gold sequence. The felt is wrinkled and stained. Every once in a while, when I return from one of my journeys and sift through my small pile of belongings, I unearth the Northern star.
One year, William was the star in the Christmas pageant at the Unitarian Universalist Church in Peterborough. Most parents carry their children around like stars, and each one of them shines brighter than all of the others. On this day, it was William’s turn to shine.
Transporting the Northern Star
I wanted to get to the church early, which is a bit of an oxymoron. Early and I don’t have much of a relationship. Early usually meant on time or a little late. On this day, a snowstorm sabotaged my intention to arrive on time. It was a beautiful day, but the roads were slick with slush.
I came to the lethal part of Route 202 where if there was going to be an accident on a snowy day this is where it would be. A line of cars slid to a stop, the kind of stop that always froze the blood in my veins. To avoid further delay, and the tension waiting in a slippery line of cars, I detoured onto a precarious dirt road. I didn’t have the patience for New Hampshire, the snow, and the beauty of it that day. I had the North Star sitting in his car seat behind me, and he was not going to miss this opportunity to shine.
Lining up the Stars
I slipped into the Peterborough Unitarian Church parking lot and bustled into the sanctuary just in time to line up for the meager procession representing the story of Christ’s birth. Kings, the ox and ass, Mary and Joseph, sheep with curly horns, and angels’ wings arranged themselves in a chaotic order. The organ blasted Christmas carols above us savoring the wonder of a baby’s birth, the angel’s call, and the star that lit the way to see this wonder.
. . . When Mary and Joseph arrived in Bethlehem, the time came for Mary to have her baby, but there was no room in the Inn, the only place with comfortable beds. Joseph looked everywhere, but the only place he could find for Mary to give birth to the baby was a stable. . .
Down the aisle walked a couple from the congregation to gather in the makeshift manger followed by goats, sheep, horses, and other animals in costumes from Christmas pageants past.
Was humbly born in a stable rude;
And the friendly beasts around him stood,
Jesus, our brother, kind and good.
“I,” said the donkey, shaggy and brown. . .
Meanwhile, there were shepherds out in the countryside watching their flocks.
The reader continued and a parade of distracted shepherds of all ages proceeded down the aisle with sheets on their heads held on by their fathers’ ties.
. . .then an angel stood before them.
Little angel girls fluttered down the aisle behind the shepherds with the bustle that only little girl angels with wire wings, tutus, and white robes can make.
This time a child’s voice echoed from the microphone:
Fear not, for I am bringing you good news of great joy for all people. To you is born this day in the city of David, a child of hope. Let this be a sign to you. You will find a child wrapped in bands of cloth and lying in a manger. Glory on earth, peace, and goodwill to all!
The child at the microphone, sounding like an angel himself, continued:
As the story goes, the wise people from the East were following a star to Bethlehem. They were bringing gifts to the child of hope.
It was William’s time to shine. He couldn’t walk yet, so I carried him down the aisle. He waved his wand and guided those wise men carrying their frankincense and myrrh, to the manger.
After that, perhaps the director of the Sunday school arranged all of us in an orderly way as we fidgeted at the pulpit. Maybe I shed a tear as I watched the three wise men offer their gifts to the babe. Maybe my heart was full of the warmth that this community had to offer. Maybe I just wondered at the Northern Star I held that morning – my guiding light.
For so the children come
And so, they have been coming. . .
No angels herald their beginnings
No prophets predict their future courses
No wise men see a star to show
where to find the babe. . .
Yet each night a child is born is a holy night.
A time for singing,
A time for wondering,
A time for worshipping.
William’s bike was tailor-made. It cost 2,500 USD, and the Lions Club helped me pay for it. It was hefty, sturdy, grounded, and metallic blue. It had a fixed gear so he could control his speed by pedaling backward. It was a bike with power — and he knew how to harness it.
Rounding the curve
William had confidence on his bike that was hard for a mother to watch. Every time he tore down Summer Street and took the 90-degree turn at the bottom of the hill, all I could do was inhale. The back wheel hung suspended. It hovered for seconds. After he had rounded the curve, the bike righted itself and sailed along seamlessly. Then I exhaled.
William sought sand patches for burning out on one of the rear wheels — an innate boy talent. All the while, he made motor sounds, sped forward to the next sand patch and continued again, and again, and again. Lost in his world of boy-dom. I would get bored and convince him to change venues.
Battle of Wills
When we rode back up Summer Street, a battle of wills took place every time we approached the last leg of the hill. He would freeze his feet on the pedals and command me to push him the rest of the way. I would refuse. He held his ground until something had to give. He was in lock-down mode. I could feel the neighbors watching, or listening. William didn’t seem to care what they thought, but I did. If I hadn’t felt as if I was on center stage in the middle of Summer Street, I would have left him there to figure it out on his own. So I faked it. Every time. I would put my finger lightly on William’s back until he broke away from me and motored up the hill with a surge that never ceased to amaze me.
Bike-riding moments like burning out, taking curves too fast and powering up hills are events that most boys do with the neighborhood kids. Events that mothers don’t have to see. It was different for William. He couldn’t keep up with the neighborhood kids. He didn’t have the processing power to ride his bike the way that they did or to make the transitions with them so quickly from bike to basketball to skateboarding or computer games. I was his biking buddy, his goalie for soccer, and his baseball compadre. I had to hold my breath when he hugged the corner that way. I had to let him be a boy.
Watch William taking Risks on Skis with CMARS! He is wearing the red coat and gray helmet.
When William was born, he paused. He didn’t cry. He just sat there just as he would for most of the transitions he made later in his life. Everyone else paused too. It wasn’t the same kind of pause that happened when Kate and Claire were born. Kate rolled out like a cannonball as if to say here I am right on time! Claire twisted and turned her way out, two weeks late as if to say here I am on my terms. But William just paused as if to say, wait a second; I need to think about this.
William is a pauser. He pauses, sometimes in mid-stride, and he seems to wait for the world to slow down until he can catch up to the moment.
Making transitions without being mindful
Many of us shift gears without thinking. We walk into a room, sit down, grab some coffee, and get to the business of doing. We hop into the car or a bus and arrive at our destination without being mindful. Sometimes we don’t remember the journey we made to get to where we were going. William sits with these moments of transition before moving on.
Transitions at birth
William was my first child, so I didn’t know what the normal after the birth routine was. I did know that something wasn’t clicking. William’s pause hung in the air a little longer than felt right. If I had known William as I do now, I would have expected it. I would have been the first one to breathe. But everything at that moment was so medical. The doctor stared at Will with relief that he had finished with his obstetrics. The nurses fluttered about quickly. They took William from me for a little too long. The room stayed dark even though the 8:30 am sunlight should have broken through the dusting of snow we had that morning.
Buying Time. No means Yes
In the years to come, educators tried to cure this pause, label it with possible seizure activity, or obstinacy. It became a part of his IEP. It became a problem to fix. When William learned to say no, he used that word to fill in the pause. It bought him a lot of time. One of his friends at daycare used to say, with William, no means yes, and this four-year-old was right.
When William transitioned from Early Intervention into pre-school, his behavior took his caretakers taken aback. When he got to school, he did not hang up his coat, take off his shoes and mittens, and tuck them neatly away in his cubicle. Apparently, this was important to them, so they called in a behavioral specialist. Luckily for William, he was a good one. Most of the behavioral specialists that we came across later, as unnecessary as the were, were cookie cutter specialists — one size fits all. This man knew his stuff. He came to the school in the morning to observe William when he got off the bus and threw his clothes on the floor.
Behavior and Transitions
When we gathered to hear the behaviorist’s opinion about how to solve this behavior problem, he started with the good news. William did not have a behavior problem. He rewound William’s morning experience from William’s perspective.
The first thing William did in the morning, once he was ready to go, was to wait for the bus. His first transition was to leave his father, who carried him to the bus. He should have walked. We should have used every moment to give William the opportunity to develop. He was so behind. Since William had just started to walk, he balked at stairs and uneven surfaces. Sometimes it was easier and more timely to carry him through this transition and sacrifice an opportunity to catch him up with all of the other kids who ran and scrambled for a seat on the bus. Then, the bus driver buckled William into his car seat and off they went. Sometimes, William fell asleep on his 15-minute drive to school.
Four transitions later. . .
When he got there, the bus driver helped him out of his seat. Then, William had to maneuver his way down the bus stairs, which he did by crawling backward. His aid offered him her hand as he walked the uneven gravel surface to the curb. The curb was a challenge, but with help, he managed it. He walked the gravel path to the school’s door, but before he got there, he had to maneuver up three steps. Once he got through the door, the teacher was there to help him start his day.
When does your day begin? The wise man said.
What no one was thinking about was that William’s day started way before that. He had made at least ten transitions between waiting for the bus and getting to school. The teacher’s fresh beginning was near to the end for William. He needed a break. And take a break he did. He usually plunked down, threw off his jacket and said no.
In this case, no did not mean yes. It meant that he was not ready. The remedy, the behavior plan? Let William throw his coat on the floor. Let him chill for a while. Then when he caught up with his day, he could go back to his coat, hang it up and start the rest of his day.
Sometimes it takes a wise person to guide you along a puzzling path. This behavior specialist wasn’t a rocket scientist. He was a man with a mindful eye. A man who pointed out that sometimes we need to respect those who take the time to smell the roses each step along the way.