An Unsung Hero, Part I

This post written by Janette Hajjar, Robert Pio Hajjar's mother. Excerpt from "The IDEAL WAY to Cook: Food for Thought".

My story could be your story. Robert could be your son or daughter. Our life for the past 31 years could be your life, whether your child is 15 or 40.

A very normal, healthy and easy pregnancy. My little angel fluttered about in my tummy with barely a ripple, while my friends complained about their babies' vigorous kicking movements and how uncomfortable they were. Only once did I feel that something could be wrong. One day, out of the blue, I asked my doctor what my chances were of having a baby with Down syndrome. His reply, "Janette, you're too young, so don't worry."

December 3rd finally arrived and we barely made it to the hospital in a blazing snow storm. Back then, husbands were not allowed to sit in on the birth, so while Elias completed the paperword, I lay there, alone, in that cold, sterile environment. Little did I know that shortly our world would be turned upside down.

Looking up about an hour later, I thought to myself, "This sure isn't like in the movies. Isn't the doctor supposed to slap my newborn baby's bottom? Isn't he supposed to tell me I had a healthy boy or girl and why did I have to ask? Isn't the nurse supposed to tell me what a beautiful baby he was as she laid him on my chest? Isn't my baby supposed to cry? And, when he did, why did he sound like a little kitten? Why was there dead silence in the room? Why was everyone looking at each other? Why were their eyes so sad?" So many whys.

The words from the doctor's mouth could have been lifted from Page 1 of the universal book, titled "Special Needs Births and How to Deliver the Worst Case Scenario"..."Your child will be profoundly retarded; we suggest you put him away, forget about him, and have another baby."

There it was...the "Down syndrome death sentence"! Those very words ripped the joy and happiness from our hearts, leaving us with such sadness, grief and overwhelming guilt. What did we do to this innocent baby? How was he to survive in the world? How would others treat him? How could that doctor know, at two days, that our baby would be profoundly retarded? Does this mean he won't walk or talk or do much? How did he know our baby's potential? IF only we knew then what we know now.

"God gave you Robert because He knew you could take care of him." Those words, uttered by my brother, Jim, literally shocked us to our senses. This young boy's wise words forced us into the realization that no matter what, we still had this little baby who was so dependant on us. Yes, it was time to end the pity party and get to work on being parents to this helpless infant whose future lay in our hands.

[For more information on "Down Syndrome Diagnosis - The First Few Days After the Diagnosis", go to About.com: Down syndrome.]

Photo: Lieutenant Governor of Ontario David Onley presents Robert Pio Hajjar with an Unsung Hero Award during a ceremony at Variety Village, Scarborough, Ontario on December 3, 2009. It was the International Day of People with Disabilities, as well as Robert's 32nd birthday!

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.

Parenting a Child with Special Needs, My View

This post was written by guest blogger, Sue Mayer, who publishes the blog “Sue Mayer – Special Needs Mom” at http://www.suemayer-specialneedsmom.blogspot.com/.

As I began to write this post, I couldn’t help but think of the many times I have wished that my children came with some type of manual. When I learned that two of them had special learning needs, I wanted that manual more than ever. I often told my Mom and my friends, “This isn’t the program I signed up for.” I always thought I would continue my career, help my children out with their homework and schooling, enjoy my hobbies, spend quality time with my husband and truly enjoy life…..and then I found out …as I like to say “Life Happens”.

"Life presents us with challenges. We can look at them as obstacles to be gone around or blessings to be found. They can either drag us down or lift us higher than we ever imagined."

When I found out my child had ADHD, Dyslexia and was Learning Disabled in Reading, Writing and Spelling, the idea of him also being gifted in other ways paled to the labels that defined his struggles. I desperately wanted to make the labels go away and just enjoy my child and make his journey something that he and I would both enjoy. I researched the diagnosis, I read volumes, I networked, and I explored the options. On our journey we have had successes and failures, we have worked together and fought against each other. We have had days that I’m sure we have made advances and days when I’m sure we are headed down the wrong trail. I’m not here to sugarcoat things, I am not going to tell you that each and every day I have found the blessing…but…each day, each situation, each struggle I try to remember the simple fact that he is my child and that there are blessings to be found. You may ask what blessings have I found….his persistence and determination is to be admired, his energy and creativeness I have often wanted to bottle and use myself, his ability to jump in without worrying about the consequences will serve him well in many aspects of life, his ability to overcome the obstacles and develop ways to cope is by far the strongest skill that will benefit him throughout his life.

After the birth of my 3rd child I learned he had Down syndrome. I searched and searched for that manual too. I knew I was headed on yet another journey and this one a road less travelled. I am happy to say my older son prepared me for this journey. I had already experienced the many frustrations, complications and consequences of having a child that is differently abled. What I wasn’t prepared for is how much more this child would teach me.

Sam is very much like his brother but he’s been further enhanced with Down syndrome and a few other things. He is equally as persistent (some would say stubborn), he is creative, resourceful and extremely intelligent. He has further defined the lesson that all children, no matter what label they have been given, can learn….but they just learn differently. Since Sam is homeschooled, he challenges me every day to figure out the best way to teach him. He has often demonstrated to me that it is not his inability to learn but my inability to figure out how to teach him. Sam has taught me to slow down….so that he can accomplish a task, respond to a request, enjoy things in nature I would not have noticed (like the caterpillar, the buds on the trees or the first spring flower). Sam approaches each day with a smile and when he laughs it is from his heart and soul, he says “Hi” to everyone he meets, he always prays before he eats, he doesn’t want to do anything unless it is going to be fun. I’ve learned a lot from Sam. We also have our difficult days and situations and again I remember he is my child and I look for and acknowledge the blessings.

A child like Sam teaches a parent to appreciate each and every day, every milestone no matter how small is to be enjoyed and celebrated. Having to teach those things that come to a typical child naturally is no small task and can make for a very long day, but to see the progress, to watch your child do something for the first time on their own is indeed one of the best blessings in life.

Now getting back to my original life plan….after many years I have figured out that I’m still living that plan. Instead of a career, I have a job, but my true passion is working with my children and helping other families of special needs children. I’m not afraid to admit the pay isn’t as good but the benefits are amazing. The part about helping out my children with their homework and schooling wasn’t what I expected but learning to advocate for my children and personally taking time to teach them one on one when needed has been an experience I will never forget and will cherish. My hobbies have changed but I still enjoy them just on a more limited basis. I make time for my husband and I, vacationing together, having dinner out or going out on a Friday night to our favorite local hangout or sitting together and talking on the many rides to doctor’s appointments and evaluations. And as for enjoying life….it is not the life I had imagined but in many ways it far surpasses that life and I truly have learned to enjoy and embrace each and every day, to look for the sun behind the clouds and to remember that life’s challenges can come at any time but the key is to acknowledge them and learn from them.

I Have a Voice

One of my favourite things to do is sit on the deck and read a good book. I can't get enough of books, sometimes juggling two or three at a time. A murder mystery is in my car (it's unthinkable to sit in a waiting room without the latest P.D. James tome to distract me from an impending dreaded root canal); my old standby, Pride and Prejudice, graces my end table in the bedroom, and dozens more are scattered throughout various rooms in our house.

Books have always been a comforting presence in my life, as well as a pleasurable way to pass the time. Oh, let's face it, some women experience the 'thrill of the hunt' when shopping for shoes, or bling. I get the same tingles all over my body when I enter a bookstore or a library.

Thankfully, I've been blessed with opportunities to sit down with other book addicts and spend countless hours mulling over the good, the bad, and the just plain ugly in every great opus.

Imagine my excitement, then, when I read that a book club was developed exclusively for the intellectually disabled? According to Newsday, "five years ago, with the help of like-minded advocates and the Port Washington Public Library, (a mother of a Down syndrome man) formed Books for Dessert, a book club - thought to be the only one of its kind on Long Island - for adults with intellectual disabilities."

"People have always assumed that people like Jamie don't really have opinions on anything remotely complex," said his mother, Nancy Comer. "They're just expected to work and be happy."

Another book club was created in Ohio, called the Next Chapter Book Club. It was "founded in 2002 at Ohio State University's Nisonger Center and now has more than 100 chapters across the country (the U.S.)," said program director Tom Fish."

Hmmm, that's all well and good for those who are lucky enough to reside in areas close to these book clubs, but what about those people who live in the boonies, or for that matter, don't happen to live in the United States?

The more I read about this wonderful opportunity, the more I itched to create the same thing, here, in Canada. I reflected on how book clubs allow the participants to create a social network, and as Fish said, "even though people with intellectual disabilities are living with greater frequency in their community, that doesn't mean they're part of the community."

After Googling everything under the sun, I finally struck gold. "Seek and ye shall find," as my mother drilled into us as children. The Down Syndrome Research Foundation (DSRF) recently announced they're bringing the Next Chapter Book Club to Canada, albeit British Columbia. However, after checking out the contact list on the Chapter Book Club site, I found a contact name in Erie County, Ontario. Eureka!

I liked the site. It's warm, friendly, and doesn't talk down to the reader. And I liked the fact that "unlike any other book club, the Next Chapter Book Club provides adolescents and adults with intellectual disabilities the opportunity to read and learn to read, talk about books, and make friends in a fun, community setting. Next Chapter Book Clubs meet weekly in local bookstores and cafes to read and discuss books of their choosing. NCBC members range from those who read well to those who do not read at all."

If your local town or city doesn't have a book club, why not start up your own club? Adapted classics are available at every bookstore, or can be purchased online. As one member said, "I like coming here because I like to read history...and I like this group. I'm alive, and I feel great being here."

It doesn't have to be a book club, of course. How about an art club, or a crafts club? The list is endless. Let's just open the gates of our communities, and invite the intellectually disabled in. Give them a place where their voices can be heard. Because they have a lot to say. We're just not listening.

Dare to Dream

Robert Hajjar, Founder of IDEAL-WAY.ca, and Michael 'Pinball' Clemons, CFL Legend and Toronto Argonauts CEO.

"All of our dreams can come true if we have the courage to pursue them." Walt Disney

"All the world's a stage." William Shakespeare

When I was four or five years old, I would escape to the sanctuary of my bedroom to sing my heart out. I would stand before the large mirror that hung over my bureau, spread my arms wide, and take a deep breath.

The stage was set, my audience silent as a tomb, waiting with bated breath for me to enter the stage. I hung back in the wings, tentative at first, and just when the tension was almost too much to bear, I'd open my mouth and sing for all the world to hear.

It was always the same. I didn't need props, or costumes, or even other people. My dream to sing and dance would play out, and I was both the audience and the player.

At the end of every performance, the audience would rise in unison, and thundering applause would fill the room. It was a spontaneous, enthusiastic response to my evident gift for life on the stage, and I knew, for a brief moment, what it was to live out my dreams.

The adrenaline rush of placing my gifts and passions in the bowl of the world's hands was extraordinary.

Like most childhood dreams, it didn't last long. After years of playing to packed houses, I eventually grew bored with it. It was a silly game, pointless, and anyway, I had better things to do with my time, I told myself.

The dream was buried, along with many other dreams and wishes, sealed away in a time capsule deep within me.

As I was driving back from a friend's home the other day, I hummed along to a song from around that time. Mama Cass crooned "Dream a Little Dream of Me." It's a romantic song, full of longing, but I couldn't help but think the title applies to most of us.

As children, we're certain that our dreams can take us anywhere. There are no physical limits on our flights of fancy, and sometimes they travel where we dare not go.

But somewhere along the line, we take our larger-than-life dreams and whittle them down to something more bite size. Our dream to perform on the stage becomes a talent for telling a darned good joke at a cocktail party. Our stripped-down dreams are tucked somewhere far away, into a distant place where we can no longer hear their siren songs. The delirious feelings of 'soaring on wings of eagles', climbing the highest peaks, or exploring the deepest chasms, are deemed unrealistic.

We dream a little dream of me. And then there are those people who use their dreams as stepping-stones on paths to rich and rewarding lives. Raymond Hu, Bernadette Resha, and Michael Johnson. Sujeet Desai and Chris Burke, to name a few. Artists, musicians, and actors, who have placed no limits on their creativity, gifts and passions, because they aren't content to stand in the wings. What they accomplished took courage, readiness, willingness, and a deep desire to share their gifts with the rest of us.

They have something else in common: they all have Down syndrome. Dare to dream, they tell us with their gifts.

If I take up their clarion call, and give permission to myself to step out of the wings and into the center of the stage, why can't I do the same for others?

While I'm in the process of encouraging myself to dream big, I can step away from the center of the stage and applaud my fellow players.

If you're interested in viewing a video of Down syndrome children and adults who have dared to dream big, click here.