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!

Keeping Your Marriage Strong

This post was written by guest blogger, Tammy Lessick, who publishes the blog "Autism Learning Felt" at http://www.autismlearningfelt.com/."

I’ve covered a lot of topics that parents of a child with autism deal with. One topic that I have not covered is how to maintain your relationship as a couple. I don’t know the exact statistics, but I do know that the divorce rate among couples with a child with a disability are higher than that of couples without. I wouldn’t be surprised if someone told me that parents of children with autism have the highest divorce rate.

We spend so much time and energy taking care of our kids, we tend to neglect each other. My husband and I do our best to make sure we have a balance in our relationship with our kids and ourselves. Do we get enough time for each other? No. We do take moments that help us connect with one another.

At home, when one of us is going in one direction and the other in a different direction, we will stop and take a moment to hug. It doesn’t sound like much, and only lasts about a minute, but it means a lot. We take a moment to say “I love you” and have a physical connection, then go about taking care of the kids. If one of us is walking by the other to take care of the latest crisis, a light caress and off we go. In the car, we will hold hands. During meals at the table, we will exchange light touches.

These little moments keep us connected. They let both of us know that we are in this together. We don’t go out without the kids that often. We try to arrange a weekend twice a year, but that is about all we get. After the kids go to bed, we take time to talk about anything that we can not discuss in front of the kids. Then, if we are not too tired, we make love. Unfortunately, it is not as often as either of us would like. If you have a child with autism or any child with a disability, then you know what I am talking about. That is why it is so important for us to make the little connections.

We love each other and our kids. That is the foundation of our relationship. To keep our connection strong, we discuss everything that is on our minds. If something is bothering us or something great happened, we discuss it. It is really important that we let each other know when we are upset about something and why. When an issue is left unspoken, it can fester and grow. The longer this goes on, the harder it is to work out the problem.

Our children need us to be happy and secure in our relationship. It is what allows us to give them the best of ourselves. It is also what gets us through the tough times. Let’s face it, there are a lot of tough times when raising an autistic child. What do you do to keep your relationship with your spouse connected and strong?

We're More Alike Than Different, Part II

Part II of Nov. 26th's post, We're More Alike Than Different, Pt. I. This post was written by Julie Scott-Trask, Oakville, Ontario. An excerpt from "The IDEAL Way to Cook: Food for Thought".


When I moved to Canada in 1976 I went home every year, sometimes twice a year. After mum died, David began to visit me. He came every year in the summer and then twice a year (summer and Christmas). I loved his visits and he loved coming. He adopted my in-laws as "his family" and took great pride in being Uncle David to my children. He held them, fed them and played with them. He had endless patience for their games and they repaid him with their love. These were precious times for me. At times we laughed together until we cried, he amazed everyone with his memory for move stars long forgotten, and I indulged his passion for wrestling by taking him to Maple Leaf Gardens.

As David aged, health issues finally prevented him from coming to stay with me. This created a huge void in my life. Now I go home to England as often as I can and visit him in his home. He lives in a house with up to three friends, all with developmental delays. The group has changed in very recent years because two of his longtime friends and housemates died. They are visited once a day from Monday to Friday by a social worker. Together they form their own family unit. Doreen has been a constant companion. She is retired and in her 60s. Her conversation is punctuated with lots of "Loves" and "Darlins". She constantly reassures me that they look after each other. Having spent time with them, I know that to be true. David's life is rich and full. When I visit him, he fits me into his life just as he used to fit into mine when he came here.

He is everything, and has the life that my parents strove for with their love and courage.

David has always been generous and patient with a world that could not embrace him, perhaps even feared his difference as if it might be contagious, and that often teased and laughed at him. Looking back, it was as if he drew strength from an inner well of knowing that he was loved without measure by his family and friends. Maybe he knew that one day the world would mature and change as its understanding grew?

I know that if the world had David's heart, it would be a very peaceful world indeed.

David is the mirror I look into as I have strived to create meaningful programs for my students these past 11 years. He is a constant reminder that they can and that I must never assume to know the limit of anyone's ability, that they will constantly surprise me if I give them the opportunity.

Big Change Ahead

This post was written by: Tamara Lucas Copeland, President, Washington Regional Association of Grantmakers, originally posted on the following website, Monday November 30, 2009: The Community Foundation for the National Capital Region.

With job losses, home foreclosures and other symptoms of the recession taking a stern toll in the Washington area, grantmakers in the region have worked hard to support efforts by nonprofits to help families ride out the storm. But grantmakers have learned a lesson from this recession, one they won’t soon forget: they need long-term strategies aimed at achieving true systemic reform–not just short-term projects that fix symptoms, but “big change” to fix big problems. Doing that requires that they mobilize the full scope of their assets–not just their dollars, but their unique capacity to bring people together to share ideas and marshal their resources.

A recent survey of Washington Regional Association of Grantmakers members confirms that local philanthropies have taken a hit during the recession, not surprising given that their investments were rocked when the bottom fell out of the stock market. They’ve had to reduce their grants this year as a result, and they expect to do even more of that next year.

Even with all that working against them, grantmakers have begun to implement a new style of giving, one that takes dead aim at the causes behind deeply rooted problems. Such grantmaking is the subject of Washington Grantmakers’ new report, Beyond Dollars: Investing in Big Change: How Washington Area Grantmakers Are Creating Lasting Impact. Focusing on a series of case studies, the report identifies four distinct elements of grantmaking that goes “beyond dollars” to achieve big change:

• Capitalizing on timing and momentum. By coordinating local and regional action with national initiatives, timing action to coincide with groundswells of public sentiment or moments of crisis, grantmakers are translating a vision for change into on-the-ground progress.
  Being a strong voice for change. By creating a platform for affected communities to engage in the policy dialogue, and sharing information with the media, policymakers and others, grantmakers are creating energy to drive change.
  Leveraging key resources. By supporting research, combining their knowledge and experience, and using their dollars to open the door to national and government funding sources, local grantmakers are creating the building blocks for change.
  Building true partnerships. By bringing organizations and individuals together in new collaborations, grantmakers are strengthening the agents of change.

Put into action in recent years, those strategies have made a real difference in the lives of our neighbors in the Washington area. For instance, as The Community Foundation’s September 11 Survivors’ Fund accumulated $25 million from more than 12,000 donors, foundation leaders asked: what will it truly take to help people heal? The Fund locked arms with Northern Virginia Family Service to pursue a case management approach. The two organizations’ intensive, seven-year partnership resulted in a model system of care—case management combined with financial support—which proved better at addressing complex long-term needs than “quick distribution” approaches.

Despite the recession, local funders are continuing such transformational grantmaking. Building on its continuing commitment to direct services, The Community Foundation’s Neighbors in Need Montgomery Fund recently announced support for a new systemic approach to delivering emergency services in isolated neighborhoods in Montgomery County to ensure services are reaching those who most need them. A partnership between IMPACT Silver Spring and the Montgomery County Department of Health and Human Services, the Neighbors Campaign hopes to leverage other community resources to sustain long-term recovery for those in crisis; create a new, sustainable network of mutual support in isolated neighborhoods and increase the number of people embarking or staying on a path toward secure employment and greater economic empowerment. Later this month, The Community Foundation will announce a new round of Neighbors in Need grants aimed at strengthening the safety-net infrastructure and system through which safety-net services are provided.

Grantmakers are continuing to provide dollars to feed the hungry and provide medical care for the poor, and in countless other ways to care for those in need. But they’re also taking aim at the broader causes of such problems, using all the tools available to them. The saying goes that if you give a hungry person a fish they’ll eat for a day, but if you teach them to fish, they’ll eat for a lifetime. What grantmakers are beginning to do is more akin to restocking the river with sustainable species of fish! Such strategic grantmaking is where foundations are headed, indeed, where they absolutely must go. The recession won’t prevent that. In fact, it makes the transition all the more imperative.

Giving It Some Thought

Photo credit: ➨ Redvers

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.

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

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