Thursday, December 31, 2009

An Unsung Hero, Part II


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

Robert Pio has been our blessing. We have been rewarded with his love, compassion, sensitivity, humour, and wit. His greatest pleasure is to surround himself with the family members who have nurtured and guided him through the years. Rob will gladly give away all he has, yet ask for nothing in return. He judges no one, yet does not realize there are people in this world who would take advantage of his gentle and honest nature. He has never deviated from his daily ritual of kissing us good night and good morning. His dedication to the Lord and Padre Pio is unwavering, and he makes time each and every day to hear mass alone in his room.

Rob has given us such joy and happiness that we could not fathom living without him! Don't get me wrong, he's not perfect by any means. There have been times when he has angered and frustrated me to the point that I have wanted to plunk him on the sidewalk with a "Free for the Taking" sign around his neck! I can't count the number of times I have sobbed because I felt I couldn't do it anymore, that I was tired and burned out. Even at my breaking point with him, and my harsh words, Rob's immediate forgiveness humbles me to the core. Like the innocent child he is, he will open his arms to give me one of his special warm hugs, and all is forgotten. I am reminded, again and again, that I am dealing with one of God's special children. How much gentler and better our world would be if we were more like them.

Growing up, my only exposure to someone with Down syndrome was Roger. This gentle giant lived down the street from us with his elderly parents. I never knew what he did or where he went during the day, and I felt sorry that he didn't have friends his age. What I do remember is how much the children enjoyed following him wherever he went.

If you ask me if I would have terminated the pregnancy back then if I knew my baby had Down syndrome, in all honesty my answer would have been, "I don't know." However, if I knew then what I know now, my answer would be a resounding "NO!"

Parents of children with special needs belong to a "special fraternity" and membership comes at a steep price. Our plane was diverted to Holland; we never made it to Italy. We have travelled a long, lonely road that is not for everyone; one paved with tears, sacrifice, dedication and, above all, patience. "We get it" when others don't. Our universal concern is, "what will happen to my child when I am gone?"

We could not imagine life without our Robert Pio. Our reward at the end of the rainbow is the satisfaction of knowing we have raised our special child to be a proud and contributing member of society, the I.D.E.A.L. child:



Included

Deserving

Equal

Appreciated

Loved

In closing, I would like to leave you with a very special poem that came to me shortly after Robert's birth. I hope that it will touch you as much as it did me so many years ago. [See this post - "The IDEAL WAY to Cook" - for poem.] God bless.

Photo: Robert Pio Hajjar with his parents, El and Janette Hajjar.

Maureen

Thursday, December 24, 2009

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!
Maureen

Thursday, December 17, 2009

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?


Maureen

Thursday, December 10, 2009

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.



Maureen

Thursday, December 3, 2009

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

Maureen

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.


Maureen

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
Maureen

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




Maureen

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 WAY.ca, 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 WAY.ca, 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.

Maureen

Tuesday, October 6, 2009

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.

Maureen

Tuesday, September 29, 2009

What Do You See When You Look in the Mirror?




"In community people care for each other and not just for the community in the abstract, as a whole, as an institution or as an ideal way of life. It is people that matter; to love and care for the people that are there, just as they are. It is to care for them in such a way that they may grow according to the plan of God and thus give much life. And it is not just caring in a passing way, but in a permanent way. Because people are bonded one to another, they make up one family, one people, one flock. And this people has been called together to be a sign and a witness, to accomplish a particular mission wish is their charism, their gift.

Jean Vanier, Community and Growth, p. 20


“Some days it's easier to say thank you world, thank you! Some days it's easier to look in the mirror than others. Some days it's easier to laugh at everything and feel the pure happiness of life. Some days it's easier to walk in your shoes and understand how you feel.”

Life & Art -- Misty Mawn.


Let’s face it, some days it is easier to look in the mirror than others. But, as the author pointed out in What Came Down Today,



“Joy is not something that you get handed, you have to seek it out. Today, in the midst of work and appointments and bill paying, and the general lub-lub of Monday, do like me and seek out something joyful.”

Or, to put it another way: "I chose joy rather than overwhelm and it changed everything," as Aprille Janes said in her blog post, "Choose Joy."


In a previous post, “Choose Joy”, my daughter wrote about the power of choice. One person who embodies joy, for her, is Robert Hajjar, Founding Director of IDEAL-WAY.ca. "Rob, who has Down syndrome, constantly exudes happiness and warmth. He doesn't waste time with negativity, but chooses, instead, to revel in life's gifts.” After making “a few small changes”, she was able to “experience what Rob must feel every day: a sense of contentment and appreciation for life.”


So, in a nutshell, what is Rob’s secret? To give you a clue, on the Sept. 12th - 13th weekend, in Hamilton, Ontario, Robert Hajjar was the featured keynote speaker at the Best Buddies National Leadership Conference.


After hearing Robert's inspiring words, Zack Langille, a 15-yr-old student, and a buddy, said, "I had a great time and learned a lot, but I was really inspired and moved by a man named Rob Hajjar. Rob Hajjar has founded an organization called IDEAL.WAY.ca. He travels to conferences, schools and such to teach people about others with intellectual disabilities. And to believe a man can do all of this, even having Down syndrome himself. It is amazing how much one person can change your life, and it is truly inspiring to know that anyone can.”


(In fact, Zack was so moved by Robert’s words that he created a group on Facebook: “Get Rob Hajjar on Ellen!” "Rob's dream is to one day be on the Ellen Degeneres Show, and I am trying to help him reach that goal. All I am asking is to click on the link, and apply him on the "how to be on the show" section of Ellen's website.”)



After hearing Robert’s inspiring words, what do I see when I look in the mirror? I see ability: the ability to choose joy every single day, rather than 'some days.' I also see a slew of post-it notes, with Robert Hajjar quotes emblazoned all over them.

“I do not let the negative into my life, only the positive.”
“Leadership is attitude.”
“I am proud of who I am, and what I’ve done.”
“Yes, I have a disability, but I ask you to see my ‘ability’.”
“Never let anyone tell you that you can’t do something.”
“I want to inspire you to follow your dreams.”


Photo credit: Mark Ferguson. Photo taken at Robert's presentation, at the Community Living Georgina AGM


Maureen

Tuesday, August 11, 2009

A Medley of Posts




Recently, Chris Brogan, a social media guru, collected some of his recent blog entries and posted them as “A Digest of Some Recent Posts”. He "wondered if there’s value in a digest of posts like this from time to time, such that you can read a whole bunch at once. Are any of these worthy of the best-of page? Is there any value at all in putting out the occasional digest post like this?
What’s your take?"

Personally, I loved the idea! Instead of slogging through his archives, keeping my fingers crossed that I’d magically come across some really useful posts, Chris read my mind and did all the work for me (and you). It was another reminder of why I like his blog so much. Chris is consistently helpful, and like a good executive assistant, he tries to anticipate our needs.

So, with that in mind, I’m going to shamelessly pilfer his idea and provide a digest of some posts (not necessarily recent) that I hope are helpful.

Dare to Live a Life of Adventure - Information on activities, and opportunities for experiencing high-challenge sports, for people with disabilities.

Horse Therapy - In combination with other therapeutic treatments, such as music or art therapy, service dogs, occupational therapy, intense early intervention (Applied Behaviour Analysis), speech therapy, and physical therapy, just to name a few, horse therapy can sometimes achieve amazing results.

Art as Healer - Information on art therapy, and various organizations that encourage the intellectually disabled to explore their creativity through art.

Music is the Key - Information on music therapy, and various organizations that use music to unlock abilities within a person.

The Magic of DogsService dogs, and various organizations that provide them.

I Have a VoiceInformation on book clubs for intellectually disabled.

Dare to Dream - Artists, musicians, and actors, who have placed no limits on their creativity, gifts and passions, and also happen to have Down syndrome.

Choose Joy, by Jennifer Lee – Musings on choosing to remain in a state of joy, no matter what the circumstances are in your life. Rob Hajjar, who has Down syndrome, constantly exudes happiness and warmth. He doesn't waste time with negativity, but chooses, instead, to revel in life's gifts.

If you think there's value in providing a collection of recent posts, let me know. And if you come across posts from other bloggers that stand out in your mind, pass them along.
What do you think about an entry on the Top 10 Recent Posts of your favourite blogs?


Photo credit: ME°°



Maureen

Wednesday, July 22, 2009

Challenging Popular Myths About Autism

This post was written by guest blogger, Rachel Cohen-Rottenberg, who publishes the blogAsperger Journeys: Reports from Life on the Spectrumat http://www.aspergerjourneys.com/.

Last spring, my family and I moved from our 22-acre farm in western Massachusetts to the center of Brattleboro. It was the beginning of a new life together.

Six months later, at the age of 50, I was diagnosed with Asperger's Syndrome, a high-functioning form of autism. Far from being a moment of heartbreak, my diagnosis was a cause for celebration. For the first time, my life made sense.

I had always felt very different from other people. I had always had a sense of apartness, of otherness, for which I could find no explanation.

The subject of autism had always fascinated me, but the idea that I might be autistic seemed absurd. I'd gone to college, made friends, and worked full-time. I was married and raising a family. How could I be autistic? After all, autistic people were locked into their own, strange worlds, unable to communicate or function in society.

Or so I thought.

I've come a long way since then. In the process of understanding myself as an autistic woman, I've had to discard all of the myths I've ever heard on the subject. These myths include the following:

* * *

Myth #1: All autistic people are nonverbal and low functioning.

Autism is a spectrum condition. In the U.S., one person in every 150 is autistic, and more than half of all autistic people have Asperger's Syndrome. In addition, many people on the spectrum find themselves between the high-functioning and low-functioning extremes. In fact, some who begin at the more severely affected end of the spectrum can become higher functioning as they grow and learn.

Myth #2: Autism is a mental illness.

Autism is not a psychological disorder. It is a neurological condition in which the brain and nervous system are highly sensitive to sensory stimuli.

When the average person takes in sensory information from the environment, he or she intuitively filters it, prioritizes it, and responds in a purposeful way. For autistic people, sensory processing works very differently. The information comes in full force, without a great deal of filtering.

For example, I have almost no ability to filter auditory information. Anywhere I go, I hear a cacophony of sounds and voices, all at the same high volume. It is difficult for me to have a conversation with a lot of sound in the background, because for me, there is very little background. Any loud, crowded, unstructured situation causes me nearly immediate sensory overload.

I also experience the visual world very intensely. I am constantly scanning my environment, looking at numerous details, and attempting to order them into some sort of pattern. Because the visual world constantly changes, my ordering process never stops. It's only recently that I've realized that most people do not experience the visual world with the same intensity that I do.

Myth #3: Autistic people lack empathy.

Far from lacking empathy, autistic people often have an excess of empathy. However, because of our sensory sensitivities, we may not always be able to show it.

As a child, I was very sensitive and vicariously experienced the suffering of others. For example, in Hebrew school, we watched Nazi footage of what had happened in the concentration camps during the Holocaust. I saw films in which people were lined up at the edge of a ditch and shot. The empathy I felt for the people was immediate. I felt myself experiencing what they were experiencing, as though it were happening to me at that very moment.

For many years since then, I've been aware that when I walk into a room full of people, I enter into the emotional experience of everyone present. It's as though all the emotions come right through me. It all comes in much faster than I can process it, but I feel its impact. I become very disoriented, so much so that I have difficulty feeling or thinking at all.

My husband can usually tell when I'm having this experience. He'll say, "You're gone, aren't you?" to which I can only nod an emphatic "Yes."

Myth #4: Autistic people are antisocial.

Autistic people often have difficulties in communication because we are unable to intuitively read nonverbal cues, such as facial expressions and body language.

I've recently learned that nonverbal cues make up about 90 percent of any conversation. Until my diagnosis, I had no idea that nonverbal language even existed. When conversing, I just hear the words. That's all. And because I just hear the words, I have to spend more time listening, translating, thinking, and responding than a neuro-typical person.

My response times are therefore delayed. People sometimes interpret my delayed response as a lack of interest. Under most circumstances, they are mistaken.

I don't it's possible for me to fully express what a longing I have to spend time with other people. However, a 10-minute conversation with one person can feel like a lot of work. A conversation with more than one person is nearly impossible. And when you add my sensory and emotional sensitivities to the mix, you get a person who requires a great deal of solitude.

Myth #5: Autistic people don't make eye contact because they don't care about what people have to say.

I find eye contact very difficult, but it has nothing to do with whether I'm interested in what someone is telling me. In fact, if I'm interested, I usually have to look away from the person in order to think clearly.

Over the years, in an attempt to mask my difficulties, I have developed a number of cloaking devices, including the ability to make and maintain eye contact. However, the skill does not come naturally.

Except for my husband and my daughter, I shy away from eye contact with most people, rather in the same way that I shy away from looking directly into the sun. When I look into a person's eyes, I have such a profound experience of the person that it's overwhelming.

Myth #6: Autistic people can't have families of their own.

Many autistic people are married and raising children. Both my husband and my daughter are neuro-typical, and I adore them.

Myth #7: Autistic people are puzzles with pieces missing.

The use of the "missing puzzle pieces" metaphor to describe autism is a source of great pain for me.

Before my diagnosis, I used to feel that I had pieces missing. Once I discovered that I had Asperger's Syndrome, all of the pieces of my life started coming together to form a coherent, recognizable picture. For the first time in my life, I felt whole.

Myth #8: Autistic people have low intelligence.

Autistic people have different levels of intelligence, just as neuro-typical people do. The test used for measuring intelligence makes a profound difference in the outcome of the assessment.

In a 2007 study, autistic children and neuro-typical children took two IQ tests: the WISC test (which relies on verbal questions and responses) and the Raven's Progressive Matrices test (which measures the ability to do high-level abstraction and complex reasoning).

Not a single autistic child scored in the high-intelligence range of the WISC; in fact, one-third scored in the low-intelligence range. However, one-third of the autistic children scored in the high-intelligence range on the Raven's. Autistic and neuro-typical adults were tested as well, with the same results.

Myth #9: Autistic people do not enjoy life.

For some autistic people, this statement is true, just as it's true for any other group of people. However, many of us find great joy in our loved ones, and we can focus like a laser beam on our special interests for hours on end. My family, my friends, my art, my music, my writing, and my community work are constant sources of joy and satisfaction.

Myth #10: Autism is a disease in need of a cure.

This statement is the focus of passionate debate.

Like many others, I do not consider autism a disease. As researchers at the Swiss Brain-Mind Institute wrote in a 2007 article, "The autistic person is an individual with remarkable and far above average capabilities due to greatly enhanced perception, attention, and memory. In fact, it is this hyper-functionality which could render the individual debilitated."

At present, there is no cure for autism. I understand why some people on the spectrum might want a cure. Being autistic, even at a high-functioning level, is very difficult. For people on the severe end of the spectrum, the condition can be truly disabling.

Personally, I do not want to be cured. Autism makes me who I am, and it has given me many gifts. I am sensitive, empathetic, and artistic. I see great beauty in the world, and I feel its injustices very deeply. I am very direct in my speech, and for that reason, people intuitively trust me.

I would not want to be different. I am proud of who I am. It has taken me 50 years to discover the truth about my life. In the time remaining to me, I plan to mine that truth for all its worth.



* * *

Photo: Dr. Hans Asperger.

Thank you, Rachel,
Maureen

Wednesday, July 15, 2009

Kids Can Make a Difference



Christine, a mom of four kids (one with Down syndrome), responded to last week's post - "Summertime, and the Living is Easy" - with some wonderful suggestions for parents (or grandparents, caregivers, etc.) who are looking for more things to do together as a family. She said, "I am always looking for more things TO DO. And, many times, I have a few nieces join my "biological summer camp".

A few things we have done are:

  1. visited the elderly in nursing homes. We bring homemade cards for them, and fresh cookies;
  2. cooking and baking lessons for the kids. Great learning experience in measuring and following the instruction on a recipe. The greatest reward is eating what you made!
  3. write letters to friends and family. For those who don't have e-mail, send those wonderful works of art that are hanging around in your home."

It occurred to me that Christine is teaching her kids how to make a difference in the world. And by making these activities fun, her children will forever associate being generous with having loads of fun. By the time they edge into adulthood, they will be eager to create their own projects, or join with others to create a "more just, sustainable, and socially responsible world."

Matt Certner, 18, was inspired to found the Sports Clinic for Special Needs. Matt was best friends with Mikey. They had known each other for years, but when Mikey was diagnosed with autism, Matt noticed a difference in the way Mikey was treated. "Particularly when he would try to play sports. Either the coaches would be too competitive to let him really participate or the kids would be callous."

"Matt wanted to let kids like Mikey have a chance at an even playing field if they wanted to play sports. Matt started with one clinic in his hometown in New Jersey with volunteers from his high school, but in 2 1/2 years, the nonprofit group has expanded to six in the state, helping approximately 100 special needs kids and their families. The kids play soccer in the fall, basketball in the winter and baseball in the spring. Like any other sports clinic, the kids get uniforms and trophies. Matt is going to Duke in the Fall, but plans to continue his work.

"I don't do it for resume status. Ever since I was young I wanted to give back. I love it. I love the kids." "

But if making a difference on such a grand scale doesn't appeal to your child, there are plenty of ways he or she can lend a hand to help those in need. In fact, it's often "small changes that make a big difference". At Kids Can Make a Difference, they have a handy What Kids Can Do page that's chockfull of ideas about how to get involved.

Their fundraising ideas include:

  1. Bake Sale
  2. Neighbourhood Flea Market
  3. Costume Ball
  4. Read, Dance or Walk-a-Thon
  5. Talent Show
  6. Art Show
  7. Poetry Reading
  8. Community Auction
  9. Car Wash
  10. Birthday Donations

As Emma Smith, 20, said about her experience volunteering for Oxfam: “Due to volunteering I have met some amazing, like-minded teenagers from all walks of life who live hundreds of miles away from each other… In fact, volunteering has encouraged me to question my life in the UK and see the world from entirely different perspectives… I encourage anyone considering volunteering to do so. Regardless of the amount of time you spare, your help will definitely be valued and it really does change your life.”

What about you? Share your experiences and your ideas with us, please.

photo credit: by terryooze


Maureen

Friday, July 3, 2009

Summertime, and the Living is Easy

When you hear the word summertime, what comes to mind? For some people, "summertime conjures up images of full-blooming nature, fluttering butterflies, and nighttime crickets. It also reflects sweltering sheets, stagnant heat, and restless nights where flipping over a cool pillow is the only way to survive."

Others would rather bask in the memories of getting up at the crack of dawn to fish in their favourite "secret" spots, or revisit the city campground/park, where they would canoe, kayak, or go tubing.

For me, "summertime" and "fun" go together like burgers and barbeques. My memories of summertime during my childhood are drenched in sunshine. It obviously must have rained, from time to time, every year, but when I close my eyes and think of summer, I can only remember spending most of every day in my bathing suit, running through sprinklers, trading homemade Kool-aid popsicles with friends, and playing hide-and-seek by the hour. During the seemingly endless days of summer, we swam, rode our bikes, and picnicked on the beach with friends and family.

As a parent, however, some of my memories of summertime are a little less idyllic. I remember scrambling for activities to fill the endless rainy days at a cottage. Not being particularly "crafty", I would dig out old Christmas cards and magazines (to cut up), jigsaw puzzles, and the ever-reliable standby, movies from the local library.

So when I came across Terri Mauro's (About.com: Special Needs Children) article on Fun Things to Do Today, I dearly wished this list had been available about 10 years ago.

One of the fun activities on her list that looked "cool", if you'll pardon the pun, was ice cube paintings. This is a craft for young and old alike, and you'd need very little in the way of supplies. A box, a piece of paper, Jell-O or Kool-Aid (she also suggests powdered tempera paint) and an ice cube. Put them together, and voila, an instant fun activity for a rainy day.

One enterprising mom uses water to entertain her child, but knowing that her autistic child loves nothing better than turning on faucets throughout the house, she capped the faucets she didn't want turned on. In order to keep the water bill manageable, she bought a small plastic pool.

"Once it is filled, I put plastic milk jugs in it with the ends cut off or holes poked in it so that when filled with water, they make different types of water formations. AND, invest in a small fountain, a little second-hand one that you could quite happily put into a fishtank, is enough to circulate the water and make them believe that they are getting running water.

What you are actually doing is recycling the water that is already in your small pool."

The National Autistic Society said, "As with all children, children with autism have a wide range of likes and dislikes. Shields (1999) has compiled a list of toys that have been demonstrated as being popular with young children with autism. They include toys which are visually interesting (e.g. bubbles, shape and colour matching or sorting toys, jigsaws, Jack-in-the-box, lego, videos: especially Thomas the Tank Engine, Pingu and Disney); books, especially those with flaps or items to touch, puzzle books, word books, etc.; physical activity toys: e.g. swing, slide, trampoline, rocking horse, ride-on toys, climbing frame, football, etc.; games to play with other people: e.g., tapes of singing and dancing games, picture lotto, snap, Connect 4, Snakes and Ladders, Ludo, chess; and computer software to develop vocabulary; factual software."

What about you? What do you do with your kids, or what did you do with your parents, on rainy days?

Photo credit: Neil MacDonald











Maureen

Wednesday, June 24, 2009

The Gift of Alone Time

I've been playing catch-up all week. Every spring, my hubby and I work together to keep our garden in some semblance of order. This year, though, we'd both been busy working on our own pet projects. Weeds sprouted, willy-nilly, throughout our garden. Needless to say, my fingers were itchy to restore order.

As I stood in the hot sun, alternately rubbing my aching back and swatting away persistent horseflies, I had a moment of clarity. It's amazing how things become clearer when you step away from your daily routine and give yourself the gift of alone time.

I chose to weed so I could give myself permission to sit in silence, so to speak. To listen to my inner voice, and, hopefully, bring order to my life, in much the same way I was attempting to bring order to my unkempt garden. Like sticking to the same old exercises over and over again, I had created a set of daily tasks that no longer served me well. My creative muscle had become flabby.

I read somewhere that we need to "practice the discipline of periodic unavailability."

Susan Florence said, "Our lives are so busy - so full of people, and things to do. By spending time alone we can discover who we really are. We will see the things that are most precious and meaningful to our lives, and we will find a sense of calm and renewal."

As I weeded, I let my voice speak in the silence. It's as if clarity was waiting in the wings. Waiting for me to slow down... and listen. Ironically, it was in this solitary state that I thought a lot about the power of collaborating with others.

"The old saying "two heads are better than one" is most often true. I find collaboration not only stimulating to my own creative thinking but also empowering," said Bunnie Riedel in Nonprofit Conversation.

Over the past few years, research has focused on "improving the ability of the entire nonprofit/civil society to work together to achieve common social goals."

"For the first time, the Heart and Stroke Foundation joined with the Canadian Mental Health Association of Peterborough to host a charity golf tournament." "Homelessness charities that usually compete for funds are working together to help get their clients into jobs."

By coming together, providing the combined resources of many organizations, nonprofits can "provide a richer environment for the people they serve."

I walked away from my time alone fired up - and more than willing to work my creative muscle. A bonus gift was that I learned the power of gratitude. I’m grateful that more and more nonprofits are reaching out to other organizations of like mind, collaborating, merging, and sharing fundraisers. Our combined efforts will only benefit the intellectually disabled community.

Do you have any ideas on how nonprofits can more effectively work together?


Maureen

Wednesday, June 17, 2009

What's on Your Wish List?



When was the last time you made a wish list? The kind you made when you were a child, spending hours, days and months fine-tuning it. Then you’d leave the list in the most conspicuous place in the house (in our house, anything propped against the kettle was found within minutes). The man with the white beard and red suit was ostensibly the recipient, but by the ripe old age of eight, you knew better.

I don’t know about you, but I’ve spent the last 20 years reading wish lists (my kids are in their 20s, but they still send me their Christmas lists) rather than putting my visions down on paper.

Why talk about wish lists in June? Well, recently, I was cooling my heels in a dentist’s office. An abscessed tooth extraction was looming over me like the proverbial black cloud and I needed something to distract me. As usual, I made my way over to the familiar sanctuary of the magazine table in the corner. The cover of April’s issue of Reader’s Digest caught my eye (hey, I was in a dentist’s office – if you prefer to read the current issue of your favourite magazine, avoid a doctor's or dentist's office like the plague). It was hard to resist the cover story, It’s a Wonderful Life (How You Can Make It Better). A good portion of the magazine was dedicated to showcasing global heroes who are championing the cause of environmental protection.

“In small ways and big, global citizens are making a difference. Regular citizens are doing their bit to make our world a better place. They’re pitching in to help the planet.”

Page after page catalogued the various heroes working tirelessly to save our planet. It got me thinking: If Reader’s Digest were to showcase people and organizations that are making a difference in the lives of the intellectually disabled, who would be on their list?

And that’s when my wish list sprang to mind fully-formed. I wanted to create a list of global heroes who are championing the rights of the intellectually disabled community (which would then appear in a mainstream magazine).

A neat fantasy, but the list was in need of a trim job. One blog post couldn’t hope to contain even a fraction of the heroes who are working on behalf of the disabled community, so I wrote the names of organizations, or individuals, on post-it notes and threw them into a hat. Then I pulled out the first five notes. (No one can accuse me of an in-depth research approach, but then my wish list will not appear in the next issue of Reader’s Digest, or any magazine for that matter.)

Advocates:

Photojournalist Dan Habib rarely thought about inclusion before he had his son Samuel seven years ago. Now he thinks about inclusion every day. Habib’s documentary film Including Samuel examines the educational and social inclusion of youth with disabilities as a civil rights issue.

Journalist Patricia Bauer’s News & Commentary on Disability Issues blog: "More than 50 million people in the United States have disabilities, a number that is growing rapidly as the population ages. Experts say disability will soon affect the lives of most Americans. This website attempts to aggregate news and commentary about disability, and to document the efforts of people who are seeking new ways to address familiar challenges. Join journalist Patricia E. Bauer as she seeks to bring you the best information about what's happening now and what it may mean for you and your loved ones."

I’m Tyler: Tyler is a typical high school student who happens to have cerebral palsy and some other challenges. He has taken on a mission to educate the world about Ability Awareness. He believes that what a person, any person, CAN do is much more important than what he/she can't.

Organizations:

Best Buddies® is the world's largest nonprofit organization for the intellectually disabled. Best Buddies Canada is a non-profit organization dedicated to enhancing our communities through one-to-one friendships between individuals with intellectual disabilities and students.

L’Arche is a place of belonging for people living with a disability and those who share life with them. Since 1964, men and women of good will, with and without intellectual disability, are commiting to each other in L'Arche to break down the barriers of fears that separate us and to create new places of belonging where everyone is important and can contribute. L'Arche is an international movement.

Film documentary:

Living Proof: The Right to Live in the Community - Living Proof provides a voice for members of society who are all too often ignored. Stigma and discrimination perpetuate a social welfare system that keeps people with intellectual disabilities from realizing their fundamental right to live independently. By describing the experiences and presenting opinions of people with intellectual disabilities, this film demonstrates the importance of achieving change in the social welfare system and in society as a whole.

Before Congress passed the Individuals with Disabilities Education Act of 1975, millions of children received inadequate special education services, and at least one million children were prevented from attending public schools altogether. Going to School, a film documentary, details the effort of the Los Angeles Unified School District to include students with disabilities in the curriculum and provide them with the same educational opportunities as other students.

Film Festivals:

Sprout Film Festival: People with developmental disabilities as subjects and performers remain marginalized in the media. The Sprout Film Festival aims to raise their profile by showcasing works in all genres featuring this population.

8th International Disability Film Festival – A short of the films that were presented in 2008. Launched in 1999, the London Disability Film Festival has grown in size, quality and impact every year. The festival has served as a model for other disability film festivals in Finland, Canada, Greece and Turkey. Its insistence on accessible premises and access facilities and programming has resulted in its becoming a beacon of best practice.
Sports:

Toronto Special Olympics (Local: Toronto, ON) The organization's primary objective is to contribute to the physical, social, and psychological development of people who have a mental disability through positive, successful experiences in sports.

Ok, so I didn’t limit my wish list to five. Frankly, the list is endless – a fact that leaves me deeply grateful.

What about you? Who is on your wish list? Who would you like to see showcased in a mainstream magazine?

Oh, and here’s one more person I couldn’t resist adding to the list:




Maureen

Monday, June 1, 2009

You've Always Had the Power





Today is Just Show Up's first anniversary. I wanted to celebrate with a cake, streamers, and a ticker-tape parade, because it's really the first anniversary of putting my fears to bed. In June of 2008, I was an online newbie, my white knuckles a testament to the level of anxiety I felt about starting a blog. Especially since it would not be a personal blog, but rather, a blog for a nonprofit organization. Gulp. Enter sweaty palms, flying monkeys, and The Wicked Witch of the West.

Like Dorothy in The Wizard of Oz, the past year has had its share of "false evidence appearing real". Fear has reared its ugly head, time and again, and many times I felt more like the Cowardly Lion. But, one year later, I sit a little taller in my chair as I plug away at my keyboard.

The journey was a slow but steady process. There was no defining moment, when a Good Witch of the North helped me to discover that the power to change was always within me. It didn't happen overnight, but the good news is that I'm learning (by and large) not to shrink back from challenges. And, more importantly, only I have the power to activate change within myself.

MacKenna Pefley, an 8th-grader, didn't have to wait over 50 years to learn this lesson. Last year, she "suffered from serious anxiety, which made her physically and emotionally unable to attend classes." But with the help of family, friends, teachers and staff, MacKenna Pefley overcame her fears and now attends classes regularly.
MacKenna used her first-hand knowledge of anxiety to "help other students with similar special challenges." She is a peer assistant in an autism focus program and works hand-in-hand with the teachers to assist students in the program who need help focusing on goals and life skills.

When trained adults are unable to reach the students, MacKenna steps in and "holds the student's hand, whispers in his or her ear and talks the student into calmness. The students don't hesitate to follow her lead."
MacKenna discovered that she "likes to help others and it makes me feel good to know I can make a difference."

It struck me then. Is the key to unlocking our potential as simple as acknowledging that the power to make a difference is within each of us?

What do you think? I'd love to hear your take on this. And while you're at it, do you know someone who faced their worst fears and, in the process, was able to transform other people's lives?


Maureen

Tuesday, May 19, 2009

What Will I Write About?



A true poet does not bother to be poetical. Nor does a nursery gardener scent his roses. ~Jean Cocteau
The poetry of the earth is never dead. ~John Keats

Spring is my favorite season. Tulips, daffodils and crocuses poke their heads up through the earth, and brown, dry grass gives way to a lush, green carpet. Nature allows things to quietly unfold. There’s no rush – all the flowers that will ever bloom take their time, knowing their natural beauty will eventually appear.

Every spring, we can count on the natural order of things to unfold as they should. If I can have faith in that simple truth, why don’t I trust in the same process, when it comes to my gifts?

Last week, I attended Ideal-Way’s first poetry workshop. Our first National Poetry Competition is underway, and one of our volunteers suggested we bring together a group of intellectually disabled individuals, to give them some basic knowledge in creating a poem. Our aim was to create an atmosphere of fun, first and foremost.

And it was fun. We played games, recited playful, interactive poems, and then asked them to fill in the blanks of a poem.

No one asked for a special pencil – “Excuse me, but I can only write with the HB #2 pencil my Grandma gave me when I was five” - or a good luck talisman guaranteed to ward off mental blocks. Although there were a few tentative smiles, every person jumped in with both feet.

Almost every poet stood at the front of the room, and either had their poem read out by a caregiver, or read it themselves. The same look of triumph lit up each face. If they were worried about the outcome, this fear was eclipsed by a desire to let their light shine.

To be honest, I would rather have root canal without anesthesia than stand before people and read my work. I marveled at their willingness, or rather, their eagerness, to walk through their fears. As one blogger noted, “when you walk through your fears, your faith in yourself will grow, allowing your next step to be easier.”

I just need to follow their lead: loosen my grip on the outcome, and trust in the process. If I take a small step, and wait for my gifts to quietly unfold, they will begin to emerge, slowly but surely, like flowers in the spring.

But why stop there? Why not offer workshops, events, exhibitions, and contests for the intellectually disabled? In short, by offering them various opportunities to unearth hidden talents, we give them the opportunity to shine. Judging by their faces, they are more than willing to explore new territory, if given half a chance.

That’s the gift I unwrapped, later, from the first Ideal-Way Poetry Workshop, held at Christian Horizons, in Toronto.
(See slideshow in sidebar for photos of our first poetry workshop.)
Photo credit: Dan Lee



Maureen
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