My high school students used to laugh at Marion the Librarian. She wore pantsuits with whale-like bell bottoms and matching tweed vests in the early 90’s. It was hard not to laugh. She just didn’t fit into the 20th century. She belonged to the world of librarians who stamped books and shushed people at every chance she got. I named her after the character, Marion the Librarian, from William’s favorite musical The Music Man.
Good bad intentions
In the musical, Marion the Librarian is no one’s favorite character. She tries to undermine Harold Hill — con-man-music-man — who convinces the town to invest in band instruments and uniforms.
Marion the Librarian teaches piano, hushes people, plays hard to get with Harold Hill, and investigates his fraudulent behavior.
Or isn’t. Because doesn’t he save the town of River City? He ends up convincing them that if you think hard enough you can play anything, believe anything, even if you have a lisp, or you’re the town troublemaker who’s in love with the Mayor’s daughter. Marion the Librarian was wrong about Professor Harold Hill. He had his flaws, but his bad intentions turned into good ones when he saved River City from itself by bringing it pride and the joy of music.
The Marion the Librarian, in the high school where I taught when William was born, in her gigantic bellbottoms and tight tweed vest was wrong too, despite her good intentions. The day I returned from my maternity leave, she drew me into her office and whispered with pursed lips, in her librarian’s voice, I am so sorry for all of your suffering. She may have done her research as good librarians do. She may have read an article about the biologist Richard Dawkins who advises women that “bringing someone who has Down syndrome into the world is immoral if you have the choice.” She may have searched the stacks for information about Down syndrome before she tried to console me. She may have come to me with the most open librarian heart that she could muster.
A Librarian’s reference to suffering
She was trying to be empathetic, but she was wrong. You see, people with Down syndrome don’t suffer because they have Down syndrome. To suffer means to experience or be subjected to something bad or unpleasant. When William and I spent two months at Children’s Hospital in Boston, we were subjected to something bad and unpleasant. At one and a half months old, he left there with battle scars from one heart surgery, an aorta repair, and all the markings that come with open heart surgery. But after that, other than the trials that all parents face raising their children, our journey was never bad or unpleasant. But I knew that Marion the Librarian’s reference to suffering wasn’t to Will’s stay at Children’s Hospital. Her reference was to the suffering that she associated with Down Syndrome.
In retrospect, that was a moment when I should have been empathetic. I should have given Marion a soft informative nudge, thanked her for her concern, and then explained that Will was no longer suffering from congenital heart failure, that there was no suffering.
Instead, I asked her what she meant about suffering. But she didn’t get it.
Every once in a while, you have to call a spade a spade, and I mean that in the Plutarchian sense. I have spent a lifetime defending Will’s identity as a person first, who has Down syndrome second. But sometimes the Down syndrome comes first. As he grows older, or new complications crop up, the medical doctors of the world remind me of that. They are, after all, doctors – scientists who wear lab coats and line up letters after their names like the Cat in the Hat stacks his helpers under his hat.
Alzheimer’s is part of the package
Lately, William has had episodes, or that is what I called them until Friday when I found out that they are seizures. I can’t hold onto the false hope that if I don’t call them that they won’t be that. I even said to the neurologist, what if I don’t believe you? What if I want you to be wrong? What if you are wrong? And he just shrugged his giant lab coat shoulders saying he knows about these things. That people with Down syndrome have seizures, and then they get Alzheimer’s, and that’s about it. That’s the end of it. He has never known it to be any other way. He has never known someone with Down syndrome who didn’t have seizures, or Alzheimer’s. It is just part of the package.
The long list
After William was born and finally diagnosed, even though I knew he had Down syndrome the minute he was born, I got a packet from the Northern New England Down Syndrome Society (NNEDSS). How fortunate that there was someone out there to help me make some sense of all of this Down Syndrome stuff. Someone has to do it. At some point, people need to sit you down and give you the facts, the statistics, and projections of what you’re up against when your son has Down syndrome. The list was long and onerous. It included things like leukemia, Alzheimer’s, dementia, heart defects, etc. I hesitate to look up this list, for fear that I may be leaving something out – some dark cloud that will come floating by one day.
When the neurologist tested Will’s coordination and reflexes he asked him to spin his hands one way in front of him one way and then to reverse the direction. Will had difficulty spinning his hands in reverse as if his brain couldn’t quite tell his hands what to do. Oh, the doctor added to his prognosis of epilepsy, and he has some brain damage. This blew me away. People get brain damage from injuries, hitting their heads, too much football, of which William had done neither. The doctor registered my dumbfounded look. Oh, it could have happened at birth, or been congenital: something in utero. You know, he raised his eyebrows, Down syndrome is like a form of brain damage.
It’s all semantics. Perhaps someone who isn’t acquainted with Down syndrome might read my reaction to these words as a surprise. Down syndrome, Trisomy 21, mental retardation, brain damage – what’s the difference? Who cares?
Not all people with down syndrome get Alzheimer’s
But sometimes you have to call a spade a spade. Otherwise, things catch up to you. You get older and realize that you aren’t prepared to hear and understand the truth. You realize that your son is almost 30 and someone tells you that it is inevitable that he could have Alzheimer’s in the next decade of his life. This, actually, is not true. I gathered the courage to look it up and find that not ALL people with Down syndrome get Alzheimer’s.
Adults with Down syndrome are at increased risk of Alzheimer’s disease as they grow older, but Alzheimer’s disease is not inevitable. There are many other possible issues to consider when concerns about memory arise, so a thoughtful approach is very important.
Chromosome 21 plays a key role in the relationship between Down syndrome and Alzheimer’s disease as it carries a gene that produces one of the key proteins involved with changes in the brain caused by Alzheimer’s.
Down syndrome heaven
Someone told me today that most people with Down syndrome bring sunshine into the world. Anyone who knows William can attest to that. Not only do they bring sunshine, but they also spread it to others like fairy dust. Maybe, she said, Alzheimer’s is where they need to go – their little heaven so to speak – to continue shedding light upon themselves rather than having modern medicine extend their short lives.
Catching the curve ball
People with Down syndrome used to die a lot earlier, of heart defects that doctors didn’t fix, untreated thyroid issues, and eventually early-onset Alzheimer’s. I am not ready to accept this idea of someone giving into a diagnosis that may take William to his special heaven away from the world of which he is such a vibrant part. I am ready to prepare for his future and catching the next curveball that the 21st chromosome throws my way.
Sometimes people with Down syndrome are difficult to understand. Remember that everyone with Down syndrome is different. It may be a challenge to understand William’s language, but another person with Down syndrome may be easy to understand. Another misconception is that people with Down syndrome don’t understand what people say to them. This is far from the truth. William understands the subtleties of language.
Language is difficult because it involves breathing, voice, and production of sound. William’s speech can be difficult to understand because he has a small mouth, low muscle tone, and difficulty with sensory processing and tactile feedback. That is why he has a language pattern of his own.
Do you speak Cochranese?
I have lived in enough foreign countries to be guilty of pretending that I understand someone when I don’t. Sometimes I am tired, or frustrated, or in too much of a hurry. I know that these people have something valuable to say. I am the one with the limitation — I just don’t get it.
Language is hard. Sometimes people can’t take the time to understand what William is trying to say. Some people nod quickly, say yes, or avert their eyes. Some people ask me for a translation. I used to wonder if people thought that William didn’t make sense – that what he was saying didn’t mean anything.
Once when William was in a class with his sister Kate trying to be understood. She translated for him. His aide said, “Oh yeah, I forgot you spoke Cochranese.”
Understanding William’s Humor
Understanding William’s language is not always easy, especially when he switches context in midstream. If you use the way he talks about film and theater, you can see how he understands the subtleties of language. His attention to the detail of these shows usually takes people by surprise.
He talks about movies, and he has a vast repertoire — The Wizard of Oz, The Music Man, Oklahoma, and an endless stream of show tunes. With such a vast repertoire, sometimes it is hard to sort out which film he is talking about. Especially when he switches to talking about a movie in the middle of a conversation because something someone says or does reminds him of it.
William can throw a line from any show tune or Disney film that has any purport for him. In the days of VHS, he watched them backward and forward. We used to have to limit his watching because he started to turn into a Buzz Lightyear and Professor Hill combination.
He remembers the names of minor characters and he will argue a point about a film even if he is dead wrong. He knows about the people who play the parts. Dick Van Dyke, aka Burt Dyke, and Julie Andrews, Robert Preston, Gene Kelly, Tom Hanks and Eddie Murphy and much more. William knows what films they have been in, who they played, and whether they are still living or dead. He also does a passable imitation of all of them. He is equally versed in Broadway and local theater.
You may not be able to understand William, but he understands you.
Understanding William’s language is not always easy, especially when he switches context in midstream. If you examine the way he talks about film and theater, you can see how he understands the subtleties of language. His attention to the detail of these shows usually takes people by surprise.
He talks about movies, and he has a vast repertoire — The Wizard of Oz, The Music Man, Oklahoma — an endless stream of show tunes and films. Sometimes it is hard to sort out which film he is talking about. Especially when he switches to talking about a movie in the middle of a conversation because something someone says or does reminds him of it.
William can throw a line from any show tune or Disney film that has any purport for him. In the days of VHS, he watched them backward and forward. We used to have to limit his watching because he started to turn into a Buzz Lightyear and Professor Hill combination.
He remembers the names of minor characters, and he will argue a point about a film even if he is dead wrong. He knows about the people who play the parts. Dick Van Dyke, aka Burt Dyke, and Julie Andrews, Robert Preston, Gene Kelly, Tom Hanks and Eddie Murphy and many more. William knows what films they have been in, who they played, and whether they are living or dead. He also does a passable imitation of all of them. He is equally versed in Broadway and local theater.
William understands the innuendos and subtleties of language. His receptive language is there. He makes connections, and he gets your jokes, your sarcasm. He comprehends abstract concepts like life, and death, and love.
When our town community theater put on Oklahoma, William crushed the opening scene when Curly made his grand entrance: “No horse?” I had to agree. Who sings “Oh What a Beautiful Morning” from the ground?
Once, a friend of mine took him to see his father in The Devil and Daniel Webster. The usher suggested that they sit in the back, wrongly assuming that this opera was out of William’s league. Of course, his friend Jim moved to the front row where William sat riveted on the edge of his seat. The usher apologized later.
Sign Language Votes for Women
When William was learning to talk, he participated in a study of Total Communication. In the study, he learned sign language as a means to give him an alternative way to communicate. It eased the slow transition that some children with Down syndrome have acquiring language. Sometimes William still uses sign language to give us hints about what he is trying to say. Sometimes he makes up signs to clarify things.
One day, William kept tapping his left shoulder with his right hand. We had watched Mary Poppins recently, but I needed more. I told him that he needed to use some words or a different sign to help me understand. Finally, he tapped his shoulder and said, “Votes for Women.”
Once I took him to his cardiology appointment, and he kept saying I’m the Tin Man. How could his cardiologist get that? When I told the cardiologist that William was talking about the Tin Man in the Wizard of Oz, William chimed in: I haven’t got a heart.
People who don’t know, or people who hesitate to ask, often don’t realize that just because someone doesn’t speak the same language as they do doesn’t mean that they are not saying something valuable. People with Down syndrome may be difficult to understand sometimes, but we all have something to say.
I don’t wonder anymore if people think that William doesn’t make sense. I do wonder if those who nod their heads and pretend to listen (the way I do when I give up trying to understand a foreign language) should know what they are missing by not learning Cochranese.
I have a recurring nightmare. We are at war, and They take William away. I am helpless to defend him, to speak for him, and to help him understand. It’s a Hitler dream fed by my chronic insomnia. Then I wake up with a dread-ache, and it takes considerable time to convince myself that this could never happen.
Joys and Concerns
We used to go to the Peterborough Unitarian Universalist Church. Every Sunday we had a moment to share hopes, concerns, and joy. One day, as the congregation was about to proceed to the next order of service, a man made his way to the platform after the joys and concerns had been closed. He, like William, just took a little longer to get places. Luckily, his companion was able to halt the service to give the man a chance to share his concern. When he reached the microphone, he talked about his mother, how much he loved her and missed her, and how he believed that she was still with him.
A William without me
It was as if this man punctured my tear bag, and I wept in the front pew of the church for the remainder of the service. I saw William without me, not understanding, the world not understanding him, alone, defenseless. A William without me. All parents go through this because they are supposed to until their children fly off to college and disappear into the adult world. But for William, my first child, I did not know where, when, how, or if he would fly. I had no sense of where he would be when I died. I could only imagine the now. So, I wept.
The other day, twenty years after the service at the Unitarian Church, I got an email describing an episode that William had with a seizure-like headache. He has had these episodes before. They are so excruciating for William that he freezes. He can’t talk, and he can’t move. Luckily, they don’t happen often, and they are not seizures. Still, I wept.
I wasn’t there for him. But someone else was. Someone who lives with him in his house at Plowshare. No one knows if these episodes come to William when he is alone because he cannot express that. But someone was there for him. It’s the what ifs that make me weep. What if someone cannot be there for him? What if his funding gets cut to such proportions that he can’t live in a place where people are there for him?
Most people don’t know that William receives government funding that makes Plowshare possible for him. People know that Will lives in a community that values him as a worker, an individual, and a community member. He would never be there if it weren’t for his funding. However, most people don’t need to worry about this. It’s my problem and William’s problem. The point is that there are millions of Williams out there in the same position.
I fear that They may take William’s funding away. Is this the dream that keeps haunting me? Maybe They won’t take him away as they do in my Hitler dream. No, They won’t take him away, but with a simple vote, They will determine that he is no longer worthy of funding. They will take away everything that I have spent his lifetime getting for him so that he can live the rich and full life that he does and reciprocate that.
I have tried writing about my concerns over the what ifs of funding a million times. But every time it comes up, he gets the funding he needs, so why do I need to rattle my unjustified concerns in your faces. Fear keeps me from telling you that William receives funding from the government that supports a lifestyle that gives him dignity and self-worth. I am scared if people find out they will think that he doesn’t deserve that privilege. Like in my dream, I fear that someone might swoop it in and take it all away. The dread-ache comes back. This time I cannot convince myself that this could never happen. I fear that it is happening.
When Plowshare has a square dance, everyone dances. They dance and dance and dance until the rhythm of the caller, and the sound of the band and the laughter becomes one pulsing, swirling melee of joy. It starts off slowly and tentatively as square dances often do until people get used to the moves.
There is that stunted moment where you wonder how a square dance could work with such a diverse collection of individuals. Then those who know the steps, start to sashay around the room pulling and promenading the rest of us into the dance. The pace picks up, and people start to swirl, and the magic of the synchronicity sweeps you off your feet.
When the music stops, you can’t tell who lives there, who doesn’t, who can talk, who can’t, who can read, or write, cut wood, smelt ore, weave, paint or make more music. You just know that there is some magic in the room and you don’t ever want it to stop.
If I could, I would
If I could live on Plowshare Farm, I would. Imagine a place where everyone is expected to do their share, and everyone does. At Plowshare, people know what they are capable of contributing and that’s what they do. It takes time to figure out where or how you can give the most, but that’s the beauty of the place. At Plowshare you take the time to find what fits, and when it does, you join in.
At Plowshare, William learned the value of work. When he got there, he tried a lot of things, and I admit, I don’t remember everything that he did try. If he did crafts, my guess is that everyone ruled that out pretty quickly, he takes after me in that department. I know he tried gardening for a while, which sort of worked, but not really. He hit the jackpot when he started to work at the cabin with Chris, the blacksmith.
William is not forthcoming when it comes to details about his work life, so I never knew exactly what went on at the cabin. One day my brother and I went to Plowshare to find out. Chris was there working alone, and he explained what they did at the cabin and the role that William played in that process.
A group of workers went to the cabin every day to melt magnetite that Chris mined. Using a Japanese smelting technique, they reduced the iron from its ore and forged the resulting metal into musical instruments. To do that, William gathered saplings from one to two inches in diameter, cut them down, and then sawed them into foot-long pieces. Then they made charcoal out of the saplings to melt the ore.
William managed the wood. He gathered, cut, sawed, and stacked. One day out of the week a man joined the Plowshare community to help at the cabin. He didn’t know the process and needed help navigating the area. William became his support, teaching him and assisting him with the process of making the charcoal to stoke the fire and melt the ore.
The value of work
The complexity of this process and the tangible final result of the work that went into it was impressive. What was more impressive was the role that William took. It worked like a square dance, first with tentative steps. Gradually, those who knew the steps pulled William into the dance of work. It was at the cabin that he experienced — in an adult sense — the value of work that goes way beyond payment or a tangible reward.
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.
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.
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.
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.
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.
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?