Thursday, November 26, 2009

We're More Alike Than Different, Part I

This post was written by Julie Scott-Trask, Oakville, Ontario. An excerpt from "The IDEAL Way to Cook: Food for Thought".

David is 59 years old and very proud of it. He is my big brother and he has Down syndrome. Born at a time when there were more questions than answers, my parents were told that he would never walk or talk or be very much of anything. The well-meaning doctors advised my parents to put David away and forget about him. After all, they were young and could have more children.

Growing up in my family, I heard this 'story' many times but didn't really feel the impact of it until last August, 2007. I was having dinner with my son, Cameron, and my daughter Adrienne. Cameron was 18 and Adrienne was 21. I was suddenly struck by what seemed to me to be a remarkable coincidence. I was exactly the age my mother was when she died in 1984 and Adrienne was the same age my mother was when she gave birth to my brother, David. In that moment, as I looked at my daughter so full of fun, freedom and excitement about her fashion course, I was filled with tremendous tenderness for my mum. For the very first time, I saw her as a young 'girl' alone in London with her husband and was filled with a new understanding of that story. How lost and bewildered they must have felt as they brought their newborn son home, without any words of congratulations, hope or joy.

Mum became a determined pioneer in the course she set out for David. Dad told me that he would leave for work in the morning and mum would be massaging David, and when he came home at night, she had clearly spent the day focused on David's care. He would walk and he would talk, and he did.

I have learned to beware of David saying, "It's not far, just around the corner." That usually means we will turn the right corner eventually!

Growing up with David was not always easy. When we were young, I fought many a fight for him when kids made fun of him. I often pulled faces at adults who openly stared at him, and if that didn't work, I would hiss at the offending adult, "Don't you know it's rude to stare?"

As a teenager, I wanted to be just like other teens. I experimented with make-up and outfits I hoped would look 'cool'. But my self-image took a beating when I was with David. No matter how much work I put into my appearance, David was the only one 'they' saw. I used to think I could be naked, and as long as David was beside me, no one would even notice. My high school was far enough away from home that I could lead a life that was quite independent. At school I was Julie, not David's sister. I had my own identity. I glossed over questions like, "Is your brother cute?" I was also able to relax the constant and exhausting vigilance I had adopted to 'protect' David. When we were home, it was a different story. We never fought, we laughed often and were just a regular brother and sister.

So I often felt very guilty for my negative feelings.


Friday, November 20, 2009

I Heard the Angels Sing, Part II

Part II of last week's post, "I Heard the Angels Sing, Part I".

This post was written by Tracey Coveart, Port Perry, Ontario. An excerpt from "The IDEAL Way to Cook: Food for Thought".

Stephanie was diagnosed with autism when she was six. She despised touch, eye contact. She lived in her own world of animals, animation and Disney characters, but she welcomed me into it - and I went, happily and gratefully.

At seventeen, Stephanie walks. She talks incessantly (and sounds just like her mother). She laughs. She hugs me. And she has never lost the ability to experience pure joy. She does it every day. Bare feet in the grass. A Frisbee, caught. A compliment.

Simba is still her best friend. But she has opened her arms to embrace the people who adore her. (And anybody who has a dog or cat!)

Her enthusiasm is infectious. She is loved by everyone her spirit touches.

Stephanie cannot read or write or do math, but these are just skills. And she has so many other wonderful talents that compensate for any abilities that she lacks.

It is not one's ability to read a soup label or balance a cheque book that is the determination of a full and meaningful life.

Stephanie has been enrolled in the associated program at school for her entire educational experience. She has no idea that she is different from the 'mainstream' kids; that she and her friends have 'special needs'. What she does have is self-confidence. Oodles of it. And a profound sense of belonging, of fitting in. She is the happiest, most well-adjusted young lady I have ever met. And as a parent, that is all I could ever hope for.

At one time, Stephanie was my greatest sorrow - a tiny tragedy that I had carried in my womb and brought forth into this harsh world. Not anymore. Stephanie taught me that the greatest gifts come wrapped in unusual packages. They don't fit neatly under the tree, but they yield the most wonderful surprises.

Although our life is not simple and the future is a frightening country, Stephanie is my greatest blessing. And if God came down to earth today and asked if I would like Him to make her a 'normal' girl, I would refuse. She is perfect. Just the way she is.

I have always said that when Stephanie was born, I heard the angels sing. I realize now that they were saying good-bye to one of their own.

Photo credit: D Sharon Pruitt

Saturday, November 14, 2009

I Heard the Angels Sing, Part I

This post was written by Tracey Coveart, Port Perry, Ontario. An excerpt from "The IDEAL Way to Cook: Food for Thought".

When my daughter was born, I wept uncontrollably. Joy rolled down my cheeks in salty rivulets. I thanked God. I thanked the nurses. I thanked anyone who might have had a hand in giving me a baby girl.

Except for the nursing, which was excruciating (she couldn't maintain a latch and my breasts would ooze blood and pus), Stephanie was a perfect angel. She slept all day and all night. She slept through feedings and nothing woke her. None of the tricks - undressing her, dipping her hands and feet in water - would rouse her.

Although I had nursed two babies, I went to La Leche League meetings to see if the experts could offer me any advice. I would come home from those meetings and tell my mom that Stephanie wasn't like the other babies. They were all smiling and touching things and making gurgling noises and sitting up on their own. Stephanie slumped in my arms like a silent and broken koala, gaze unfocused, mouth slack, arms hanging limply at her sides.

Every fibre in my body told me that something was seriously wrong with my beautiful baby.

Stephanie missed all of her milestones. In spite of my concerns, the doctor insisted that nothing was wrong; that kids develop at different rates; that what I read in the books was meant to be a guideline only. But I wasn't a neophyte.

In desperation, I went to my public health nurse and requested a well baby check. I returned to my GP (the doctor who had delivered Stephanie) and took a different tack. Stephie's shins were terribly twisted and I told the GP that I wanted to see the 'travelling pediatrician' who came to our small valley town once a month regarding my daughter's legs. She finally agreed.

And then all hell broke loose.

The public health nurse, not surprisingly, found that Stephanie was significantly delayed in every area. The pediatrician took one look at my six-month-old baby and set off alarm bells I hadn't even imagined. She filled the examination room with words like 'spina bifida' and 'cerebral palsy.' She made an emergency referral to the Children's Hospital of Eastern Ontario (CHEO), which would soon become my second home.

What ensued was a whirlwind of medical tests and appointments that yielded few answers. What we did find out was that Stephanie had severe tibial torsion. An orthopedic surgeon put a cast on her tiny right leg. Months later she would graduate to Dennis Brown boots, adjustable leather shoes with a metal bar between them that she would wear to bed for the next year.

Stephanie did not sit up. Her tiny hands would open and close, open and close when she saw a toy, but her arm did not move. She did not seem to recognize me. She did not play peek-a-boo. She did not wave bye-bye. She did not speak. What she did do was cry, inconsolably, for 23 hours a day. Between 3 a.m. and 3:30 a.m. I could slide down onto a couch with her on my tummy for blessed sleep. No one could make her stop.

My husband threw himself into work. My parents came to visit from Toronto once a month. The rest of the time I was alone with my wailing baby and two little boys.

I came close to losing my mind. One night, with Stephanie in my lap screaming, I beat myself with my fists until I was black and blue. I was prescribed an anti-depressant. It helped. So did the visits from Faye, Stephie's developmental worker. Between the two, they kept me sane.

Shephie lifted her head off the floor when she was nine months old. She began rocking on her hands and knees a few months later. When she started to crawl, she stopped crying. Looking back, I think it was pure frustration at being able to do nothing. The will was there, the cognitive ability was not.

For Christmas that year, the only gift my dad wanted was for Stephie to walk. On December 24, she took her first tentative steps. She was sixteen months old. She was our Christmas miracle.

In January she stopped trying. We noticed new things. Her head would suddenly fall forward while she was putting blocks into a bowl. Her legs would buckle beneath her when she stood at the couch. Her hand went back and forth to her mouth in a strange and repetitive gesture.

We went to see the neurologist at CHEO and she booked Stephie for a raft of tests. EEG, evoked potentials, MRI.

The EEG, said Dr. Whiting, was one of the best they had ever seen. I was elated. She rephrased. The most conclusive - and one of the worst - they had ever seen. Stephie was having a seizure every 10 seconds. This helped to explain her developmental delay.

Dr. Whiting used an analogy to describe Stephie's condition. Imagine you are driving in the car and listening to a ball game. You are waiting for the score. Just as the announcer starts to speak, you drive under a bridge. He gives the vital statistic, but you don't hear it. This was happening to Stephanie six times a minute. How could she possibly learn? She was missing too much information.

We tried every possible seizure medication. Stephie loved to watch 'Fish TV' - goldfish swimming in a tank in the dining room. We named the fish after her medications: Clobizam, Frizium. We were down to our last fish - Depakene - when Stephie's seizures finally stopped.

She started walking again shortly after her second birthday. She learned her first word. "I-oh." The name of our cat, Lion. Faye and I rejoiced together. Sephie still didn't seem to recognize me, but she knew that cat. And she looked for him. It was huge. She worked her fingers in his hair. He was the perfect therapy.

But I wanted more. Physio. OT. Speech. Sensory Integration. Anything I could get my hands on. I travelled the hour to the Children's Treatment Centre several times a week, often falling asleep at the wheel of my car from stress and exhaustion. I was obsessed.

And not only with Stephie's development, but also with the cause of her undiagnosed disability. (70% of kids with developmental delay - or 'mental retardation' as one doctor arcanely put it, causing my jaw to drop - are never lucky enough to receive a label.)

We had our well water tested. It came back with a higher than acceptable concentration of lead. There was a pulp mill across the river. I was convinced that this had damaged my daughter's brain.

Dr. Whiting sat me down in her office and gave me the best advice I have ever received. She told me I could either focus on a law suit or focus on Stephanie. I wouldn't have time to do both. As for therapy, the best thing that I could do for Stephanie was to love her.

And that's what I did. I stopped sweating the details and I loved my daughter. Fiercely.

I am not an overly religious person but I made a deal with God. If he let Stephanie live, I would cope with anything else.

Thus ended the darkest period in my life. And when I opened the curtains and let the sun spill into the room, I realized that my daughter was a miracle. She was a gift that had been given to me to treasure; a special child who would never cease to delight; a beautiful soul overflowing with wonder.

I threw away all of my road maps. I no longer worried about where we were going and when we were going to get there. I took hold of my daughter's hand and together we set about enjoying the journey.

Photo credit: badzmanaois


Thursday, November 5, 2009

"The IDEAL Way to Cook"

“The IDEAL Way to Cook: Food for Thought” cookbook sits on my desk, hot off the presses. A couple of years ago, friends of Adeline “Addie” Daabous, Executive Director of IDEAL, approached her with the idea of a cookbook. Not just your run-of-the-mill cookbook, either, but one that would contain all her recipes. (I had sampled Addie’s cooking, so images of a cookbook containing her delicious recipes danced in my head. I kept my fingers firmly crossed that she would agree to our request.)

Let’s fact it, any cook worth their salt keeps their secrets under lock and key. They may be willing to share their favourite recipes with their loved ones…but the entire community? In the end, Addie graciously agreed to donate all her recipes to charity: IDEAL-WAY Inc.

As Addie said, “Initially, I thought oh no, giving away all my secrets. When I realized it was for IDEAL, I could not resist. This is not “just” another cookbook. Its contents are uniquely different, in ways which will surprise and delight you, with proceeds going to a worthwhile cause. This book is dedicated to all the “special” individuals we support. May they be honoured and recognized for their wonderful gifts to your community.”

As I leaf through this cookbook that is more than a cookbook, I realize that it will not only become a favourite in my kitchen - ultimately stained with gravy, tomato sauce, and my personal favourite, chocolate - but on my coffee table, too. This is the kind of book that you read out loud to your children before bedtime, or share with visitors, for it’s chockfull of “heartwarming personal stories of joy and hardship,” as well as poetry, which “provides a window of insight into often overlooked capabilities of persons with intellectual disabilities.”

The following is an excerpt from “The IDEAL Way to Cook: Food for Thought:

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability, to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. Michelangelo’s David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills…and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very, very significant loss.

But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.
copyright 1987 by Emily Perl Kingsley. All rights reserved. Reprinted by permission of the author.
Special thanks to Pearson Canada for without them, "The Ideal Way to Cook, Food for Thought" cookbook would not have been possible.

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