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This personal essay is included in a collection of essays edited by Eileen Ahern: "Uncharted Journey: Unexpected Blessings” (published Fall 2004, CDLS Foundation). Although it isn't part of the family history focus of this site, there may be a family who can connect with it (thanks to the wonders of Google) and in reading it perhaps find some solace - perhaps feel less alone.
Sharon Oddie Brown, updated October 14, 2005.
For more information about CDLS,
http://www.cdlsusa.org/
Sharon Oddie Brown, August 2003

“I try to help you with your schoolwork,” I yelled at my daughter, “and you scribble all over it. You rip it up. You throw it on the floor. So then, I say, okay, lets do it again. You say I can’t. I say, FINE! All I’ve been getting from you is: I want I want I want. All day long you’ve been saying, NO NO NO. I’ve had enough! Get out of here! I don’t want to even see you! Get to your room!”

5:00 PM is the witching hour in our household, this day it was my turn to be the witch. Standing in front of me was my daughter, age eight, about three feet tall and still only capable of speaking in the simplest of sentences. She had been born with CDLS. Cornelia de Lange Syndrome, to be precise.

For the first three years of her life, she screamed for five hours a night with what we later learned was probably pain from reflux (acids coming up from her stomach and burning her oesophagus). In her early months, it had taken me ten hours a day to nurse her with a special technique that kept her back straight and her body slightly away from mine. A cuddle – for her - was sensory overload. For two years I did this, her digestion too iffy too handle much else. Yet, there we were, eight years later, combatants.

Not that this was new. On most days her emotional volatility would put the Italian parliament to shame . For much of this day, she had been displaying what the experts label oppositional defiance disorder, and finally - in the witching hour - I lost it. As I spooled on for several paragraphs worth, she stood still as a statue about eight feet away and simply watched me. Thirty-four pounds of invincibility. When I finally stopped to take a breath, she quietly interjected, Mum. You have other options.

Thank goodness for the mercy of laughter.

Twelve years later, my husband and I were in the audience at her High School graduation where in spite of the limitations of her IQ (close to seventy), she had graduated with a Dogwood Certificate - one notch beneath University Entrance. She had even made the Honour Roll. Twice. As she strode before us, she was wearing a blue gown with the square blue cap and a golden tassel dangling down by her left eye. Her shoes were silver. Her shoulders were square with pride as she mounted the steps to the stage, along with some hundred and thirty others, all their hearts filled with that stew of promise and questioning particular to young grads. I had taken seven pictures already, pre-digital pictures, and she was yet to be seated on the stage.

Slow down, Mum, I told myself. Breathe.

When she was born, her prognosis was bleak. A month later, my husband and I were still absorbing the advice given by our GP, our paediatrician and our geneticist. I also delved into medical texts at the Woodward Biomedical Library where I had once worked. It seemed, both from what I could read and what we were being told, that our daughter would likely die before age two. It also seemed most likely that if she didn’t, she would be profoundly retarded and autistic.

Days after this diagnosis, Tante Hannah who at age eighty had held dozens of the babies born into my husband’s family took our daughter into her arms and looked thoughtfully into her eyes. “Nicht retarded”, she insisted. I desperately wanted to believe this, but couldn’t. Not back then.

In those early years, the most profound healing from a medical person came to us from our GP. He had come to our home because I had told him that I felt too emotionally raw to come down to his office and be visible in a public space. After the usual pleasantries, he unwrapped our daughter’s clothing, lightly tapped her tummy, manipulated her limbs and listened to her heart and lungs with his stethoscope. Then he told us, Medicine is bankrupt when it comes to things like this. All we can give you is a label. You need another way to see your daughter. To see Vanessa. Maybe you should have an astrological chart done. Get another vantage point. Then he sat down and played piano for us. For half an hour. Nothing couold have been more healing.

A couple of months later, our paediatrician at Children’s Hospital, a man in his sixties, told me that one of his patients, born with Down Syndrome, was now in his twenties and going to college. These syndromes have a range, he told me. Not everyone is hit equally hard. While I couldn’t believe that college might be possible for our daughter, I decided right then and there never to set the ceiling too low for her.

And now? Well, she goes to Capilano College two days a week and is doing two courses on the Internet. Computing. Keyboarding. Accounting. More correctly, I am doing these courses too. She needs someone constantly sitting beside her, keeping her on task, calming her when she panics. So, I am learning about the Internet.

In The Wizard of Oz, Dorothy clicks her red shoes together and is in Kansas. Getting to college has taken Vanessa a whole lot more than two clicks of two red shoes. Her baby steps began with the staff at Sandcastle Preschool. They taught sign language to our whole family. Vanessa didn't start speaking until about age five or six. Just like Einstein, we said, even though we knew how far off the scale that was.

During those early sign language days, I was elected to our Municipal Council as an Alderman. Vanessa and her older sister, Sabrina, thought that I had been elected “Older Mum” which made as much sense as anything. I came to many of the meetings with an oversize briefcase which impressed the media no end, but which was actually filled with Duplo and puzzles. While Council deliberated, Vanessa played silently beneath the Council Chambers table, tapping my leg if she needed me to watch her hands for a message. In fact, her attendance was better than that of many other elected officials. Some would argue that her input was preferable too. The City administrator emptied a drawer in his office and filled it with colouring books, a chalk slate and an Etch-a-Sketch.

One day when I was at a meeting in another municipality, the school phoned City Hall to tell me that Vanessa had just thrown up. Knowing it would take hours for me to get back, the Mayor’s secretary drove over and picked her up, put her vomit-dampened runners into an official looking envelope and stamped it In Camera. Vanessa then slept on a couch in the mayor’s office until I returned and took her home.

Kindergarten was great - so good for Vanessa that she did it twice - but Grade One was a disaster. The Grade One teacher didn’t agree with the new policy of integrated classes, was not emotionally equipped to handle it and threw spanners into the works with great accuracy and regularity. She phoned me at least twice a week to come and pick Vanessa up. “Right Now!” This in spite of the fact that illness and stress reactions meant that Vanessa was only at school something less than half time anyway. Our phone calls tended to go something like this:

"You have to come pick Vanessa up."
"Why?"
"She just pulled her pants down in class."
"Back up a moment. What was happening?"
"She wouldn’t do her math."
"And then she pulled her pants down?"
"Yes."
"And does she have to do her math now?"
"Well, no."
"So, guess who won this round?"

I couldn't resist the final retort.. After a few months of this, the proverbial finally hit the fan. My husband took the call one Friday afternoon. Vanessa’s teacher was hysterical and feared for the loss of her job. Vanessa's older sister Sabrina told us she had heard the sounds of slaps, hard ones from her classroom across the hall. Fortunately my husband told the teacher, I think I hear two calls for help here. That night, an official from the School Board called up to say that there would finally be an Aide in the classroom during the morning, starting next Monday. We agreed that for the afternoons, I would take Vanessa home. We played together. Did puzzles. Cooked. Coloured. Or went to meetings at City Hall.

I doubt that we have received that extra help if my husband and I didn't have such a high profile in the community. The children who pulled a short straw and were born to alcoholic parents and who live in violent families need this kind of help even more than we did, but we rarely open the public purse wide enough for these kinds of children to benefit. As parents, all we can do is volunteer our time, donate, advocate and never forget. Delange Syndrome wakes us up to the injustice of all this.

Although Grade One was a pain, we also had many gifted people working with Vanessa in her Elementary School years. Because she was so sensitive to loud noises and other stimuli, she would frequently overload. Sometimes she would be like a fuse that blows and shuts down when the line heats up. Other times, she would be on her back kicking her feet and screaming. The gifted teachers intervened before the problems arose. They gave her time out when they intuited its necessity. The school principle backed them up and welcomed Vanessa into his office, not as a punishment, but as a place of respite. She blossomed.

At home, we complemented the work done at school. Because Vanessa was so good with puzzles, we sought out all kinds of them to teach her basic skills. We had a soft rubber puzzle with the letters of the alphabet and a soft rubber clock that had holes to press in the numbers and hands. We had three dimensional hard plastic puzzles which had slots for wooden tiles with letters on them so she could make patterns and write words which could go up, down and sideways. She seemed to learn most easily through her body, so we all took turns with games such as writing big letters on each other’s backs with our fingers and challenging the person whose back was the slate to guess what the word was. And yes, there were times, many of them, when it all ended in tears. Often, an assignment, which had taken days to complete, would be ripped to shreds in the eleventh hour.

The first two years of High School were the worst of Vanessa’s schooling career. It was a classic case of the wrong system with the wrong person in charge being responsible for fitting a round peg into a square hole. In this school, the special needs students were separated into two camps. The one into which Vanessa was streamed had all the students whose problems had as much to do with behaviour as they had to do with learning. The other stream was for children who could barely talk or else had other huge cognitive barriers. The behavioural stream included three girls and about twenty boys, boys who were often literally bouncing off the walls - and anything else they could find. Vanessa was terrified but was also so keen to succeed that she said nothing. She sat there, quietly in her own little zone, accomplishing little and rocking when it all became too much.

The worst part for her was Phys. Ed.. Imagine a four foot six, less than robust Grade Eight girl being required to play soccer with mostly males, some of them up to six feet two. Her reaction was to throw up or have migraines on P.E. days, although it took me a while to connect the two. When I talked to the head teacher about finding a solution to this, I got nowhere. If she is going to stay in this stream, she needs P.E., he said. The alternative was to put her in the stream with the largely non-verbal low functioning students. This was no alternative. I couldn’t imagine a better way to kill her self-esteem and shut her down for good.

After three months of getting nowhere on this score, my husband intervened. Suddenly, it was possible for Vanessa to drop the P.E. component. I shared my outrage with a friend. I go in daily, I talk, I write letters, I get nowhere, and one phone call from Andreas and we have what we want.

Well, dear, she said, it’s simple. You don’t have the dingle dangle. This victory, however, proved illusory. At the end of the year when Vanessa got her report card, her grade for P.E. said “F”. This became one of the reasons we eventually decided to move away from the town of Mission.

On BC’s Sunshine Coast, where we now live, the local School Board had recently undertaken an innovative initiative. They asked all their staff - teachers, aides, secretaries, janitors, school bus drivers, you name it - if they were interested in taking training in working with special needs students. The training would be done on their own time, evenings and weekends, but the resulting credits would mean that in most cases, salaries would rise. The School District contracted with a university to package the courses so that the staff could do them locally (the university was a ferry ride and a two-hour drive away). As a result, all staff were more attuned to the needs of students with various handicaps. Also, because they had come to know one another better by being in a common learning environment, they were much more comfortable seeking one another out for problem solving. A science teacher who had never considered how her teaching style might be adapted for kids like Vanessa now incorporated such changes into her ongoing methods of teaching. The janitor's advice on how things were going became important. Win, win.

Students like Vanessa had choices. For P.E., she was able to take Outdoor Ed. with an emphasis on hiking, canoeing, swimming and such. When the rest of the students were kayaking, it was decided that two-handed kite flying would be more appropriate for her. In later years, she did horseback riding, yoga, walking and weight training. The end result was that she became more fit, learned how to participate in activities which would be available to her as an adult and best of all, had no reason to throw up or have migraines on P.E. days. Her absentee record went from an annual seventy-six days in her old school to two days in her new one.

In this school, I was welcomed as a partner, not treated as an adversary. These were the years when she attained Honour Roll status. When problems came up, the head teacher got right onto them. Vanessa completed most of her schoolwork at school, not at home as had been the case in the other high school. Teachers e-mailed me to keep me posted. In Grades Eleven and Twelve when Provincial Exams were required in core subjects such as Science and English, she was given an Aide to sit beside her and help her stay focussed.

Her hardest exam was English, language skills still not being her strong suit. The provincial rules gave her extra time, but no other concession. Several times during the exam she burst into tears and had to be given time out. The Aide would get her a drink, walk her around the school and do whatever was required to get her back together. Five hours later, the two-hour exam was completed. Two months later, when the marks came in, Vanessa had scored 68%, right on the provincial average. At graduation, she had accumulated a $400.00 educational credit towards post-secondary education.

Even so, there are still no ruby red shoes to click together. A couple of years ago, Vanessa and I drove down the American west coast on an adventure of her choosing - to go to LA and see where her beloved soaps were filmed and maybe, just maybe, see a star. I packed the trunk with camping gear but it quickly became apparent that she was already on overload. Motels with air conditioning and swimming pools in which she could float for hours became the minimum standard. Even at that, even with the most attuned of handling, meltdowns were frequent.

At the end of one of these days, on our way home in a motel somewhere in northern California, I said, Look. We have two more days of driving and I can’t stand being treated the way that you are treating me.

You don’t understand, Mum, she said. She smacked one of the beds. Say this is my bad brain. Then she smacked the other bed. And this is my good brain. She stood between the two beds, facing the good bed. And there is a wall between them. Cement. And I am trying to get through. And I have only my fingers. She clawed at the imaginary wall. It’s hard, Mum.

Children who are more acutely afflicted by the brain-scrambling of this syndrome may live in blissful ignorance of its costs. Not young women like Vanessa. She is too high functioning for ignorance. She yearns for friends and has few who are her own age. Depression is a frequent visitor to her emotional landscape. Days can go by with her only social contact being my friends and myself. Why do I have to be born like this, she demands. Premenstrual days are the worst.

At her college courses, her emotional wiring is still such that she needs someone to sit with her and keep her on task, so that’s what I do. It isn’t perfect. There used to be money for institutions to offer such supports but we are moving into meaner times in our political environments. The commons is shrinking. We do what we can.

Wisdom and intellect don’t necessarily come in the same box. I have known many people gifted in the smarts department who are still in nursery school when it comes to that quality which we call wise. Eighteen years ago, when my mother was lying in her deathbed at our home, Vanessa carefully daubed a tear from the corner of my mother’s eye when no one else had even noticed that it was there. She was two years old. Years later, when an aged aunt said, Don’t cry for me when I die. I am old. It will be good, Vanessa’s response was, Of course we will cry. It will hurt. We love you so much. Two doors down from us, a family has just broken up in a painful prelude to divorce. Vanessa has some kind of radar, which lets her know when the mother of three children needs a hug. She walks over, delivers it and comes home. This is what I call “wisdom”.

Sure there are still many days (far, far fewer now) when I find myself at the end of my tether with frustration over her emotional flame-outs, and yes, there are still days when I lose it. Still, I do my best to remember the best advice: Mum, you have other options.

POSTSCRIPT 2010: For the past eight years, Vanessa has worked an average of three mornings a week stocking shelves in the hardware department at Canadian Tire. She passed all her college courses, and plans to do more. She lives in her own home - with meals and other supports from family and friends. She’s moving on.

 

 

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