Just Show Up

This Blog Has Moved

2010-11-05T08:58:00.008-04:00

This blog has a new name and address! Please save the following link and visit us on our new and improved blog.

http://ideal-way.ca/.

Look for "Robert's Road" - our new blog's name - and click on that tab to keep updated on Robert Pio Hajjar's journey.

Hope to see you there.

Photo: Robert Pio Hajjar

Who Changed Your Life?

2010-09-16T10:14:00.017-04:00

In August, Best Buddies held a contest - "What was your favorite 2010 Leadership Conference moment?". Buddies from all over the world voted for their favourite. Tori's entry received the #2 spot:

Robert Pio Hajjar Changed My life
by Tori Flather

"During the Saturday morning session, Robert spoke about how God helped him grow into the person he is today. I remember he said that he may never be a doctor, but he can be your best friend. He also said he has a disability, but it does not have him. That night I was able to meet him and his aunt at the dance contest. Singing Taylor Swift all night with him was pretty sweet! Robert is my inspiration for my chapter this year. It’s my first year being in Best Buddies but I will “keep the faith” as he would say and press forth to make Best Buddies known, accepted, and growing in my school and community!"

Who changed your life?

Robert and Best Buddies.

To see Robert in action, check out Christina Marsh's video:

Indulge a Bit: In Yourself

2010-09-13T16:54:00.005-04:00

"Reprinted from "OUR Journey THRU Autism," a blog featuring professional experts and warrior parents to help you on your journey thru autism. Subscribe today at http://www.ourjourneythruautism.com."

I have been offering posts that focus more on taking care of you. This is the nurse in me with the mental health nursing background shining through. I cannot understate this....it is extremely important to take care of yourself. Think of yourself as a bank. The demands and challenges of life and raising our children are withdrawals. If we do not have any deposits, then our account will be empty and nothing can happen with an empty account.

We are of no good to our family if we do not take care of ourselves. Most of us do not have a plethora of support, so there is no point sitting around hoping that someone will make a deposit into our emotional bank. We need to create our own deposits.

Personally, I am already planning ahead for the fall as my own emotional bank account is running low on funds. My oldest will be off to his new college, my second teen will be back to school, my 5 year old will start kindergarten and my younger one will be in Preschool. In addition, Autumn is my all time favorite season. I love the Indian Summer, warm weather with minimal humidity. So, in addition to getting to all the incomplete projects around the house, I plan on indulging a bit in me...something I have not done since the little ones were born.

Join me as I explore some low cost self indulgent options...

Mini makeover... I plan on freshening my look and boosting my confidence. I am shooting for a new hairstyle and color that washes away the gray while adding some highlights. I am going to schedule a manicure and a pedicure. I am going to buy a new outfit and maybe even start wearing lipstick again! I will not be visiting a high-end salon...but will be seeking out budget friendly options.

Cook gourmet, well, sort of...I remember a time when my husband and I would work side by side in the kitchen cooking together. I really miss that. I love to create great meals. Sure, we still cook. Hubby is usually out at the grill and I am making the side dishes inside. But I plan to find a good recipe that is very healthy to boot low in carbs and cholesterol. I am going to see if my mom can take the boys so my husband and I can open a bottle of wine, turn on some relaxing music and see if he and I can recapture the art of preparing a meal together. Silly, I know, but it is something that I really do miss. Hey mom, hint, hint!

Love Learning. Did you know that continuing to learn throughout your life can keep you young and vital...the key to longevity? I have been thinking about a hobby or two that I enjoyed in the distant past as well as a few that I might be interested in. I am going to keep this one simple, but I may get back into my crafty side and take a few craft classes. I have been looking into photography classes too. Maybe you would like to learn how to play an instrument or dabble in a fine art?

Vacations? A thing of the past? For us it really has been. So, with my oldest boy transferring to a college nearly 10 hours away, we have a road trip coming up. We are going to take full advantage of it and add a couple of days to the adventure. After we move him in...we have the road home to ourselves and will be stopping off at some places we have never seen together. Much needed, not overly killing our tight budget and we will see if my husband's parents can keep the little ones. Just the anticipation of planning this adventure lifts my spirits!

Really Indulge...if our budget allows, I think I am going to check out some local spas and create a spa day for myself. For goodness sake, my dog recently had one after she was skunked. I am going to look for express services which offer a shorter version of massage or facial to be friendly to our tight purse strings. When I was working full time before the little ones came along, I treated myself to a one hour massage every other week to rejuvenate and work on all those tight muscles. We cannot afford to get back into that routine, but a budget friendlier version is certainly much needed.

Read a great fiction! I used to escape into a good book. I would excitedly wake up and read in the morning before the day began. Reading a great fiction is a wonderful way to ignite the imagination and mentally escape from the everyday demands. Any good recommendations?
Exercise! Fitness offers so many rewards. This oppressive heat has kept me indoors and I certainly have cabin fever. We have a wonderful park nearby with a bike path. I used to walk it or ride my bike and zone out leaving all the worries behind me. I would return home feeling energized and ready to begin the day. Once the heat of the summer subsides and the suffocating humidity wanes, I will be hitting the bike path once again. Depending on our finances, I may even join the local community center that offers a weight room, cardio room and a pool. I was a competitive swimmer back in the day and would love to do some serious laps once again.

What are you going to do to recharge your batteries and make deposits into your emotional bank account? Start planning to take care of you today!

Tiffani Lawton, OJTA

2010 International Day of People with Disabilities

2010-09-09T16:28:00.007-04:00

"Mark December 3 on your calendar to celebrate the 2010 International Day of People with Disabilities.

The City of Toronto, its community and business partners invite you to contribute to the event.

1. nominate local unsung heroes
2. submit your poems to the Invitation to Poetry
3. display your artwork at the Invitation to Art

The deadline for unsung heroes nominations, poetry and art submissions is Thursday, September 30, 2010.

Watch the video and find out what International Day of People with Disabilities means to participants, past recipients of the Unsung Heroes award, the poets and artists." (From Toronto.ca.)

[Watch for Robert Pio Hajjar, Founder of IDEAL-WAY, in the video.]

Wordless Wednesday - "A Story of Hope"

2010-07-14T10:48:00.002-04:00

"Diagnosed with autism at age two, and unable to speak until age three, Gina Marie Incandela is an example of hope and the embodiment of what it means to overcome obstacles."

"Gina is the amazing little girl that rose to fame performing the National Anthem at events throughout the country including the 2009 NBA Finals. Her story is nothing short of amazing. Join Gina on Facebook at www.Facebook.com/GinaMarie Incandela
For more information visit www.GinaMarieIncandela.com."

My Life In Pictures

2010-06-28T10:45:00.003-04:00

Meet Taylor Morris: "I was diagnosed at age two as being on the Autism spectrum. Today, at 17, I'm creating videos to support awareness. This is my story, with the song "Trying To Get Through To You", by Autistic singer/songwriter Michael Moon. See all my videos at http://www.MeetTaylorMorris.com."

Wordless Wednesday - Gifts

2010-06-23T08:26:00.002-04:00

"Gifts: Mothers Reflect on How Children With Down Syndrome Enrich Their Lives." For more information on the book, visit http://giftsds.segullah.org.

Florida Keys Art By Cinnamon

2010-06-01T06:00:00.001-04:00

Today, June 1st, is Just Show Up's second anniversary, and I can't think of a better way to celebrate it than with a selection of paintings and photographs by Cinnamon Edgar.

I was surfing the Net the other day and came across Cinnamon Edgar's website. I was immediately captivated by her photography and artwork. To be honest, I'm more than a little picky when it comes to art. I've been known to spend weeks scouring the nation for artwork for our home, only to give up in frustration.

But Cinnamon's paintings and photographs spoke to me on a visceral level. Her body of work is impressive, but for me, a painting or a photograph has to make me feel something beyond mere pleasure. To hang on my wall, or grace my desk, it must transport me to another world.

In short, Cinnamon's work has the artistic wow factor that I don't often find.

Florida Monthly Magazine did a feature on Cinnamon, along with 20 other "intriguing Floridians": "Born with Down syndrome, Edgar developed her love of art at the Marian Center in Miami Gardens, a Catholic school for children with developmental disabilities. Teachers encouraged her to pursue her interests and asked Edgar to paint or draw pictures for cards, special invitations or auxiliary fundraisers."

According to the website, "Cinnamon chose to start her business after making greeting cards for everyone she knows and was prompted repeatedly to start a business. She won a scholarship from the University of South Florida several years ago to do just that."

And the result is a thriving business that showcases Cinnamon's immense talent.

Oh, and as if Cinnamon isn't busy enough creating works of art, "she has won several fishing tournaments including the Miami Metropolitan South Florida Fishing Tournament, winning Jr. Master Angler two years in a row. She loves all kinds of music, although classical and oldies are her favorites."

To read an article on Cinnamon in the Miami Herald, "Florida Keys artist doesn't let Down syndrome stand in her way", click here.

I've given you just a taste of her work, but to see more of her scenic note cards, photographs and watercolors, or to order from Florida Keys Art By Cinnamon, click here.

Self Advocate of the Year Award

2010-05-23T07:13:00.019-04:00

"I wish I had known that this would be an incredible journey, and that everything would turn out just fine...I wish I’d known to listen more."

In last week's post, guest blogger Addie Daabous looked back at her life with her nephew, Robert Pio Hajjar. In her eloquent poem, "I Wish I Had Known", Addie echoes what so many of us struggle with: the regret, or more precisely, the wish that we had done things differently. If only I had listened more...if only I knew then what I know now...are words that haunt most of us in the dead of night. But this is where the author of the poem and the reader part ways.

Recently, Robert Hajjar, and Ideal-Way Co-Founder, Addie Daabous, travelled to Regina, Saskatchewan to speak at the 2010 Canadian Down Syndrome Conference. We knew that between Robert's motivational speech and Addie's presentation, there wouldn't be a dry eye in the house. And yet, we were on pins and needles. Robert had been nominated for one of their annual awards.

"The Canadian Down Syndrome Society Awards are given annually at the CDSS National Conference. These awards recognize the outstanding contributions of individuals and organizations who support the vision and mission of the CDSS and work to enrich the lives of people with Down syndrome and the communities where they live and work."

Self-Advocate of the Year Award "is given out to encourage and help promote self-advocacy in Canada. The CDSS wants to honour the work and accomplishments of one self-advocate with Down syndrome each year."

As Ian Gillespie wrote in an article for the London Free Press,

"He graduated from high school, set a Special Olympics record in 25-metre freestyle swimming, has volunteered extensively, received the city of Toronto’s “Unsung Hero” award on the International Day of Disabled Persons last December and, last weekend, was awarded the prestigious “Self Advocate of the Year” award at the Canadian Down Syndrome Association annual conference held in Regina, Sask.

The award recognizes Robert’s extensive work as a motivational speaker — he’s scheduled to give 18 speeches this month and next, including a five-day stint in California."

All of which begs the question: What if Addie Daabous hadn't listened to her nephew? When Robert asked her to start a charity for people like him, what if she had listened to her own fears instead? What if Robert had handed over his life savings of $62.05, which he had kept hidden under his bed in a wooden box, as IDEAL-WAY's first donation, and she had put it in a high interest savings account instead?

Instead, Addie Daabous chose to embrace Robert's dream. As Ian wrote, "now, with projects that include painting and decorating group homes, national literacy and art competitions and a $50,000 giveaway of day-to-day items such as clothing and toiletries, the Ideal-Way charity is helping others like him.

“I stopped and listened to him, and that was when my life changed,” says Daabous. “He just inspires people to the Nth degree.” "

Congratulations, Robert, on winning the "Self Advocate of the Year Award"! And while we're at it, thank you, Addie Daabous, for stopping and listening to him. To paraphrase a quote, our best decisions, the ones that we never regret, come from listening to a Down syndrome man's dream.

Photos courtesy of Addie Daabous, co-founder of IDEAL-WAY.ca.

I Wish I Had Known

2010-05-19T06:00:00.001-04:00

I Wish I Had Known
by Addie Daabous

I wish I had known that this would be an incredible journey, and that everything would turn out just fine.

I wish that I had known that my heart would heal one day, and that Robert’s love was the cure.

I wish I had known that Robert’s birth was not the end of the world.

I wish I’d known to listen more.

I wish I had known having Robert in my life would change the person I am.

I wish I had known that life would not be defined by misconceptions I had about Down syndrome, but that it would be as “normal” as normal gets … and that Robert would fill my life with love and joy beyond my expectations.

I wish someone would have told me that Robert was going to change my outlook on life and make me a better person.

I wish I had known that Robert was so abled.

I wish I had known that Robert would be so full of life.

I wish I had known that it is a privilege to be Robert’s aunt.

I wish I had known that the universe would unfold as it should.

I wish I had known that Robert would be just like you and me!

Wordless Wednesday - "I Have a Voice"

2010-05-12T15:02:00.007-04:00

(GiGi's Playhouse, Down syndrome Centers, promotes Down syndrome awareness through its "i have a voice" Travelling Gallery. It features images of 30 Down syndrome children, by renowned photographer Thomas Balsamo. "A beautifully crafted coffee table book of nearly 40 portraits and first person and family accounts, entitled 'i have a voice', showcases their potential and humanity to open minds and change lives."

The goal of the campaign is to "seek to change outdated perceptions and replace those images with beautiful, thought provoking, intelligent images.”

“GiGi's is committed to the important mission of spreading positive and accurate information about Down syndrome through education. We know that by helping individuals with Down syndrome reach their highest potential, we can change outdated perceptions that people may have. The end result is a world that is empowered with knowledge, compassion, and inspiration - what a better place for all of us!”)

Autism Rainbow Day

2010-04-22T14:10:00.018-04:00

Run your fingers through my soul. For once, just once, feel exactly what I feel, believe exactly what I believe, perceive as I perceive, look, examine, and for once; just once, understand." ~ Oscar Wilde (from the website of Rainbowland Autism Services).

Facebook is helping to spread awareness about autism. Recently I joined the Autism Rainbow Day (30th April 2010) group, created by Rainbowland Autism Services.

“Rainbowland Autism Services (RAS) is a modern, innovative
and energetic organisation that demonstrates its passion
for helping families living with autism through its dynamic services and
commitment to global autism awareness. RAS strives to advocate for the human
rights of its families and promote community awareness and inclusion at
every opportunity."

I was intrigued by the beauty and simplicity of their awareness campaign, Autism Rainbow Day, which will take place on Friday, April 30, 2010. They are urging "businesses, schools and social groups from all over the world to help raise awareness for autism by wearing different colored T-Shirts that represent the colors of the rainbow and to read an autism awareness sheet." According to an online article by the examiner, Autism Rainbow Day is happening in towns throughout the world; and it all started with one small family in Australia."

Three years ago, Allison and Shane Dix's three-year-old twin sons were diagnosed with autism, and their eight-year-old daughter was diagnosed with Asperger's Syndrome. "We had been talking a lot about how beautiful rainbows are because we had already established a family support group called ‘Rainbowland Play Time'. We thought it would be nice if the public associated people with autism with something so beautiful. We then spoke about having a special day for autism awareness and came up with. . . Autism Rainbow Day."

WHAT CAN WE DO?

Learn 2 Be Buddies blog made it easy for us. Just follow these simple steps:

Join the Autism Rainbow Day Facebook Group
Download your Rainbow Day Poster - print it and hang it everywhere.
Tell your school and workplace about it - and hang more posters.
On Friday 30th wear a plain coloured t-shirt (and keep a few in your car to share with those who have forgotten :) )
When people ask why you are wearing bright colours, tell them about Autism. To help you with this, Allison has put together an Autism Awareness Sheet which you can pass on to people. *

On April 30, 2010, we can choose to celebrate the lives of autistic people living within our community.

("This video is a tribute to the adventures of Josh, who is autistic and is from England. Compiled by his father Phillip for Autism Rainbow Day, this video portrays his deep love for his son. "Autistic children are happy and can have fun doing day to day things. We are so blessed to have Josh. He is my whole world, and I would not change a thing,” Phillip says of his son. Samantha E., a 17-year-old autistic girl, is the singer on the track and gave permission to use it on this video. (Phil is raising money for his son’s school (Curnow is a large special school in Cornwall. They cater for children and students between 2 and 19 and all have severe learning difficulties (SLD), with many also having sensory or medical needs and prefound multiple learning difficulties. A number of their children/students have difficulties in managing their own behaviour resulting from their Autistic Spectrum Disorders) in England by climbing Mount Kilimanjaro this summer (June 25th to July 7th 2010). For more information, go to http://www.justgiving.com/phillip-wills.)

Wordless Wednesday

2010-04-14T06:00:00.001-04:00

(Okay, a few words are in order. I found this video ("Difference is an Artist's Game")on About.com: Special Needs Children's website. It's a sister's view of Down syndrome - her "take on society's labels and stereotypes.")

"The Life That's Chosen Me"

2010-04-06T11:26:00.008-04:00

Recently a friend on Facebook sent all her friends a beautiful video. As she eloquently wrote in her note:

"It is Autism Awareness Month and I bring you a treasure... from the heart and soul. It truly is a beautiful, must have and it is my absolute privilege to be connected to such a gorgeous piece of art. This is a gift. The entire album is just amazing! My very dear friend, Randy Grossman, has one of the biggest hearts I know. Please read what follows, listen to the title song, "The Life That's Chosen Me " or click here to purchase this beautiful CD NOW...

Harmonizing with Humanity recognizes that music is a powerful force for change in the world.

While listening to a friend talk about his children, who both have special needs, Grammy nominated songwriter and artist Karen Taylor-Good sat down, wrote, and put to music the inspirational lead song for the album, The Life That's Chosen Me.

This song, and album, is produced by Harmonizing with Humanity, an organization dedicated to unite like-minded and “positive music” artists and fans who love listening."

"This parent who was the inspiration for Karen Taylor-Good happened to be Randy Grossman, Vice-President of Harmonizing with Humanity.

“The Life That’s Chosen Me” is meant to uplift the spirits of all families and caregivers of children and adults with special needs. They are often the last to be thanked, the most overwhelmed, and the most underappreciated – we want to recognize their constant attention, heartache, and struggle in caring for their children."

Pay It Forward: Handy Links

2010-03-30T19:27:00.011-04:00

It never ceases to amaze me how an idea for a post can morph into something entirely different the moment pen meets paper. My original intention was to post a list of handy tips and resources I've culled from the Internet over the past few months.

I thought I'd add a few more links to my already burgeoning list, so yesterday I went online in search of blog posts or websites that offer information on making life a little easier, especially for parents of intellectually disabled children. And then I stumbled upon the FOX 4 News website.

“Fox 4 News is Working for You with an uplifting new series of stories. It's called "Pay It Forward," and we're giving you the chance to help change someone's life. Each week, FOX 4's Kathy Quinn shows us what happens when someone you don't expect steps up at just the right time to make someone else's life a little easier. You'll be amazed at the way you'll feel when you help us "Pay It Forward." "
I loved the concept, but as my husband often says, what's not to love? Somehow I ended up at the Random Acts of Kindness site. After scrolling down their 100 Ideas for Kindness, I realized that it’s the little gestures that sometimes count the most. “Laughing out loud often, and sharing your smile generously”; and "Extend a hand to someone in need. Give your full attention and simply listen" are two examples that are easy to put into action.
So it occurred to me that my small gesture of the day could be a list of links that I think provide real value:
Helpful blog posts from Beginning Reading Help.
Tips for teaching personal hygiene in young children with intellectual disability. in young children with intellectual disability.
Try This Tuesday: Showers of Independence Terri, author of Barriers, Bridges and Books, shares tips on hygiene. (‘Try This Tuesday’ is devoted to “sharing solutions that make life easier.”)
Resources, support and help for the child with developmental disabilities. (About.com: Special Education).
Procedures for Reducing Dental Fear in Children with Autism.
Tips for Successful Haircutting, Autism Speaks:
Differently Abled!: This web site is based on a guide that Amazon.com and Toys R' Us created. It is used to help people select toys for children with different abilities.
Musical potty training for kids with autism.
The President's Choice Children's Charity: Offers financial assistance to purchase equipment or services to families who have children born with disabilities.
Canada Benefits Website: Government-wide information about benefit programs and services for individuals.
That’s it for now. I'll save the rest for another time.
What about you? Do you have a pay-it-forward idea? Or a handy tip that you’d like to share with us?

Young Girl Helping Others via Noolmusic.com

Photo: latddotcom. Taken in Central Square, Cambridge, MA, outside 1369 Coffee Shop, during the Stranger Exchange's first week of launch (October 2009).

With a Little Help From My Friends

2010-03-16T11:24:00.013-04:00

"Every gift from a friend is a wish for your happiness..." ~ Richard Bach

In "The IDEAL WAY to Cook: Food for Thought," Jim Daabous gave the reader some insight into his nephew, Robert Hajjar.

"Well, what can I remember most? It has to be my nephew's desire to drive. Drive anything. It all started with a big wheel, the three wheeler with the large front wheel. When he was just a little guy, the two of us would go for a long walk/ride. Me on one side and him on the other, taking up the whole sidewalk. Crazy thing is, he never looked ahead, only down and/or to the side. Loved to watch the ground go by beneath him. All the while, running over anything in his way, or worse, my feet. As he got to be a better "driver," he graduated to shopping carts. Beware anybody who got in front of him, you were fair game, as the cart's front wheels peeled the skin off your ankles. Now resigned to the fact that he won't drive a car, he has his mother sit in the backseat of the car when his family goes on a trip, while he and his father sit up front. You need a good navigator, you know."

Robert Hajjar recently gave a speech to students at Sacred Heart CHS, in Newmarket. He mentioned the fact that he has always liked to be first in everything. “Especially the buffet table,” he said, and smiled.

What he didn’t mention was that he also puts his friends and family first. “I see all of you as my friends,” he told the riveted audience at Sacred Heart.

As founder of IDEAL-WAY, Robert was speaking on behalf of Best Buddies. (Sacred Heart has one of the largest contingents of volunteer students for Best Buddies.) After he gave his speech – and received a standing ovation – student members of Best Buddies and their developmentally challenged friends got up on stage and wowed the crowd with a rousing dance number to “I’ve Gotta Feeling”, by The Black Eyed Peas.

As they strutted their stuff on the stage, it got me thinking about what it means to be a true friend and why it’s so important to have at least one person you can connect with on a deep level.

“Best Buddies is grounded in the belief that friendship is important to the development of all individuals and that for all people with intellectual disabilities friendship is a medium through which they can become a part of their communities… For a person with an intellectual disability, friendship helps to ease the isolation, disempowerment or loneliness that often deepens the challenges that he or she faces daily. By having a student friend, Buddies are able to explore their world with a peer who brings empathy, laughter and support.”

Of course, friends are essential when you’re hanging off the edge of a cliff by your fingernails.

“Although they have known each other for just a few months, Baldwin High School students Heather Paranada and Rachel Barrett know the true meaning of friendship. As peer buddies in the Best Buddies Chapter at Baldwin, they are part of Best Buddies Hawai‘i. Rachel is not only intellectually disabled, but she also has a condition called Kyphoscoliosis…[which is] a curving of the spine that causes a bowing of the back, with scoliosis, a condition in which the spine curves away from the middle, or sideways.”

Rachel was told she would need to have a “very difficult” operation. Rachel bravely traveled to the Shriners Hospital in Philadelphia, Penn., to undergo two surgeries. At their first meeting, Heather presented Rachel with a teddy bear, necklace and bracelet to take on her trip and comfort her throughout her surgeries. “I wasn’t able to say bye to her at the airport before she left, but I did call her to say goodbye and she was sad,” she said. “But I told her it’s not goodbye, it’s ‘see you later.’” “I’ve been emailing her since she left, and Mrs. Barrett has been updating all of us of Rachel’s condition,” she said. “Everyone at Best Buddies is really pulling for Rachel and awaiting her return to Maui,” said McCormick. “They are following Rachel’s progress very closely.” " [Excerpt from The Maui Weekly, by Sarah Ruppenthal.]

In the first post of this blog, I wrote that "Rob is a reminder to shine your light into every corner of your world. And don't be afraid to offer whatever gifts you have. The beauty contained in a simple act of love will transform every life around you."

Photo: Matthew Amos.

Diamond in the Sand

2010-03-04T06:00:00.000-05:00

Written by Ann Racioppo, from the book, "Convalescent Heart".

“But God hath chosen the foolish things of the world to confound the wise; and God hath chosen the weak things of the world to confound the things which are mighty.” 1Cor. 1:27

Diamond in the Sand

Born into the world, just like you and me
Alike, yet so different his life it would be;
At first, hard to see, all the doctors had said
We wanted to deny all his struggles ahead.
Was greeted with mourning revealed in each face;
But this little one, born with his health on the line
Was surrounded by angels, and God’s perfect design
Carefully placed, by God in our care
Trusting the Master, when it didn’t seem fair
It wasn’t a fluke, why it happened this way—
Teach me, dear Lord, how to trust and to pray
What seems like a loss, God turns for a win;
Let go of the fear, and turn it over to Him
He knows that what others do in such a short time
An ocean to swim—for him—a mountain to climb.
Every day a new challenge, to teach him so much;
But he’s really teaching me, with his innocent touch,
So close to God’s heart, and loves similar to Him
He’ll never cause grief, by falling deep into sin.
And when I feel sad, and not quite like myself,
His hugs bring me comfort, like God, Himself.
What the world viewed, as tragic and loss,
Was instrumental in bringing me to the cross.
Man looks at the outside, but God sees the heart;
He created each one, like a rare piece of art.
Whatever the cross, that you have to bear,
Remember God promised His Grace to be there.
He’ll never allow more than you can endure,
Surrender to Him, gain victory sure,
No matter how far you may have to run,
He’ll go the distance, which means you have won!

Dedicated to all parents of children who are developmentally challenged.

Ann Racioppo ©

Photo: killerajet

Take a Big Bite Out of Life

2010-02-25T06:00:00.003-05:00

This post written by Philip Li-Wei Julio Chen, Mississauga, ON. Excerpt from "The IDEAL WAY to Cook: Food for Thought".

Flipping through the pages of a seemingly perfect spring edition of Martha Stewart's Living magazine, one finds innumberable recipes, with lists of natural ingredients alongside cooking instructions. What is not mentioned in such lists, but remains of great importance to the resulting taste, are the chef's experiences, those of his/her assistants, the available kitchenware and the overall condition of the kitchen under which these ingredients are prepared.

While studying Health Sciences at university, I similarly examined the "recipe" for "health". In doing so, I was instructed to put on a pair of biomedical lenses, filtering out personal experiences, the available resources and social conditions. Moreover, this biomedical lens prompted me to mechanically dissect the concept of health into pathological terms, cell counts and malfunctioning body parts. And finally, to discard the pith - the person - as a whole.

My experiences with people who have different abilities and needs have opened up my eyes and helped me to recognize that beyond the absence of disease, health is a state of well-being, deeply connected to engaging human connections, meaningful occupation, the environment, a lived spiritualityand one's right to expression and curiosity. By putting "the person" back into the recipe, we are able to focus on everyone's unique abilities and strengths, as well as understand that being alive and living are two vastly different flavours.

Furthermore, working with people with different abilities in therapeutic programs has taught me just how grand life is. A vivid memory comes to mind: a young adult succeeding in writing his own name independently for the first time in his life exclaims, "Oh, look, I can write my name! I can do it!" In this fast-paced world, we have forgotten to appreciate our body and mind. We take our different abilities for granted; we have forgotten to celebrate.

Yes, you can do it! Celebrate every accomplishment, big or small.

Appreciate your mind and your body.

And go ahead, take a big bite out of life and savour health in its entirety and the joy of living.

Sharing My Life with Eric

2010-02-18T07:00:00.004-05:00

This post was written by Lisa Raffoul, mother and co-founder of Ensemble. Excerpt from "The IDEAL WAY to Cook: Food for Thought".

I remember so vividly the day that Eric was born and every day that followed. After he was born, they placed him in my arms. I looked at him and thought that he was perfect! His face was pink and round, and he looked so peaceful and sweet. I couldn't seem to take my eyes away, for he was more handsome than I had ever imagined. For that one moment, time stood still and it was only me and my baby. That moment would never return.

The first few years after Eric was born were extremely exhausting and emotionally intense. Eric hardly slept, there were numerous stays in the hospital, and we also had another child, Adam, who was two years old. I was so tired that I felt like I was floating through the day. My husband, Lou, and I would take shifts so that we could get our rest; he would stay up late and then wake me up around 2:00 a.m. so that I could take over. I was lucky to get at least three hours of sleep and then I was up to face the day. Eric screamed for most of the day and it was a challenge to spend time with Adam. Once Lou got home, he would take over and I could focus on other things. My parents were a huge help to us and I honestly don't know how we would have made it through this time in our lives without them.

This went on for about four years. During that time, I learned to ask for help and realized that although I was the mom, I definitely needed in-home support. It was very difficult to have someone come into the privacy of our home, but we knew that we couldn't do it alone.

Our lives were filled with doctor's appointments and medical tests. Everyone was trying to figure out what was wrong with him; to try to find a possible "fix". After years of testing and trying to figure out a diagnosis, I said to Lou, "you know what, enough tests, enough questions. He is who he is and that's it. What we have to do is make sure he's happy and offer him the best life we can, and let's carry on with our life."

I believe this was a turning point for us. We no longer viewed Eric as our sick child, but rather just our child. I can't deny, our situation was still very overwhelming and difficult, but at least we stopped letting it consume our lives.

Eric has been our greatest teacher about children. We know that every child is unique. Too often our children are assessed by traditional expectations...how fast can they run, how high can they jump, how far can they throw. While holding a spoon independently may be an easy task for a typical child, for Eric, it was a major milestone achievement. Eric has taught us to look for the uniqueness in all children and realize that each of them has gifts and contributions to offer and that they will achieve success at their own pace according to their own abilities. We have learned to pace ourselves, nurture one another, take each day at a time and appreciate the good in our lives. There is a cliche that says, "success doesn't come without hard work." In our circumstance, the work is grueling, the pace is demanding, but for all that we have learned and for the wisdom we have gained...priceless!

"Ensemble is a parent directed resource for families that have children with disabilities and for related professionals. We offer a continuum of support from the beginning of diagnosis through to adulthood."

Photo: tibchris

Seen Any Miracles?

2010-02-11T06:00:00.003-05:00

This post was written by guest blogger, Kara Ferris.

There are many people who, when I share that I am very passionate about working with people who have disabilities, ask if I pray for them - if I’ve seen healing and miracles. Well, let me share with you a little bit about some of the people that I know:

Bryce. You sit so contently in the presence of your family. You tenderly hold your father’s hand; a young man of 19, you are unashamed to show and receive love. An incomplete spinal cord has made it impossible for you to use your legs, which sit still in the chair beneath you. Instead of running around, busy with things that consume you like so many of us often do, you have learned to be still and cherish every relationship that surrounds you.

Brooke. With severe autism, seeming not to know how to function in this society, Brooke doesn’t understand personal space. She doesn’t know a stranger; and she seems to gravitate towards those that others most often leave rejected and ignored, wanting to meet them, befriend them, ask them for a kiss on the back of her hand.

Our sweet little Brycen. Your parents don’t see the negative in Down syndrome. Instead, they celebrate your every milestone, your sweet love for Jesus, and refer to that 13th chromosome, not as a syndrome but the gift that you’ve been given as the extra chromosome of worship! I’m learning from them to appreciate, instead of criticize, to embrace my own children and celebrate their differences.

Robert. At 32, a motivational speaker, you’ve become a role model for many others who have Down syndrome, as well as for those of us who do not. You inspire everyone, and tell them that they can grow up to be just like you, not because you think more of yourself than you really should, but because you are secure in knowing who God created you to be. I wish I could be so secure and live up to my God-given potential the way it is happening in you.

Justin. Diagnosed with Angelman Syndrome, which involves a severe mental delay, causes him to behave more like a 2 year old than the 17 year old that he is in his 6 foot tall, 200 pound body. The unusual trait of the “syndrome” is that he has an unusually happy demeanor, engaging smile and frequent laughter. He’s reminded me of the joy of experiencing a noogie, laughing without inhibition at silly things like Sponge Bob, and taking the time to savor the connection that is made with him so quickly, kissing away his booboos. Not only is it important to give Justin love, but to receive his love as well. I think we all need a touch of Angelman Syndrome.

Sarah’s parents were told that she wouldn’t live, and so they brought her home from the hospital, with hydrocephalus, physical anomalies, emergency after emergency procedures, choosing instead to focus on the future that only God could give. Now, at 26, Sarah knows that each and every life around her is one that deserves to be cherished and prayed for; going into nursing homes and visiting the lonely, sharing God’s love to the forgotten, and at the end of the day, she appreciates every sunset with deepest gratitude, as if God created them just for her. Sarah, you’ve taught me to live in the moment and cherish what I have been given.

Joni Earickson Tada, a woman I’d call one of my greatest heroes. I’ve wiped her nose, cut up her food, and worked right alongside of her. I’ve learned about full and complete surrender, totally yielding to wherever God will take you, doing whatever it is that he is calling you to do, while knowing at the same time that it could never be accomplished in my own strength. She has built a ministry that touches millions of lives through Joni, and it all happened after she became paralyzed from the neck down. I have used my own healthy legs far too often to carry me down a path that has led me away from God’s will for my life, rather than toward it.

And finally, Nick Vujicic. No arms and no legs, the smallest man I’ve ever known, yet with the biggest heart and an even greater spirit, who exudes so much hope that God is using him to touch the world! Doors in Muslim countries are swinging wide open to receive him, as well as in the Mormon Tabernacle where they have welcomed him in. People by the hundreds of thousands are receiving Jesus Christ as their personal Savior because without arms and legs, Nick cannot focus on his physical appearance, his physique, building up his ego. He’s chosen not to be bitter about what he does not have. Instead, he is focused on revealing our Father’s heart for his children, because that is what he has pursued and that’s exactly what God has given him. Makes my complaining about my aging body seem rather frivolous.

So, when I’m asked if I’ve prayed for healing for my friends and if I have seen miracles happen, my answer would have to be, yes, yes, I have. And because of the Sovereignty of our God and who He is, the miracles and healing have not only happened in the lives of my friends, but I’ve found that they are also happening in me.

Special...Every Day...and in Every Way

2010-02-04T08:00:00.001-05:00

This post written by Greg Bandler, Toronto, ON. Excerpt from "The IDEAL WAY to Cook: Food for Thought."

For many people, the label "special needs" signals a person who requires special concessions - big and small. But the "label definition" is often quite different for the parents, siblings, family members and close friends of "special needs" kids. Quite simply, the label should be shortened to a single word: "special". Certainly an applicable description for our son, Michael, now age 20.

We have special times with our Michael on a daily basis. It's wonderful to enjoy and experience life through his particular lenses and filters. He and I recently took in our first Toronto FC soccer game together at the BMO Field on the CNE grounds. I was graciously extended tickets at the last minute, possibly because the ticket holder confirmed that the weather forecast of a cold and wet Thursday night appeared accurate. No matter. I advised Michael to get ready and dress warmly - we were off to the soccer game. He brought the enthusiasm and anxiety of a five year old - so prevalent in our extremely social and kind-hearted special child. We endured the most horrendous traffic jam - a Toronto traffic jam of epic proportions! - to arrive in time for the opening kick-off...of the second half...Even so, our spirits were not dampened.

The game was fast moving. The home team enjoyed a one-nil advantage and defended strongly throughout the second half. It was interesting to see how Michael pointed out other special people in the crowd immediately upon sitting down. Dad, look at the guy three rows down - he looks drunk - has he been drinking? Dad, why did that guy hurl a red streamer at the player who was on the sideline doing a throw-in? He shouldn't do that - why did he do that? Dad, why are all those people standing in the end zone singing and acting rowdy - should they be doing that in a public place? Of course, none of the questions were posed at the socially accepted "whisper level". No, they were posed at full audible volume for anyone within earshot to ponder.

After the game, we returned to our van in the parking lot, staying dry and warm. We waited to chauffeur Michael's 16-year-old sister and her friends home from the concert they were attending at Ontario Place. In the end, we had a two-hour wait, but it zipped by in what felt like minutes. We did some people watching. We decided to walk a bit to see if we could hear the music at the outdoor concert more clearly. We had a hot dog from the street vendor. Based on the number of dogs he would soon sell from his BBQ, we calculated he must live in a mansion! We chatted and listened to music on the van radio.

Michael reinforced his special place in my heart with the simple phrase, "Thanks, Dad. I love spending time with you. Can we do this again?" We listened to more music. And we people watched more. We were in our own special world. So much so that I hadn't noticed the van's battery drain with the lights and radio on. We needed a boost, albeit not in an emotional sense. It had been a special night - from start to finish - despite the traffic, despite the rain and cold, despite the wait, or perhaps, because of the wait.

Enjoying our children for who they are and experiencing life through their special lenses and filters is indeed a privilege and a reminder of just what "special" truly means.

Our kids are indeed special...every day...and in every way!

Photo: SamVincent

Connecting with the Classroom

2010-01-28T11:32:00.001-05:00

This post written by Dianne Ward, Woodstock, ON.

Excerpt from "The Ideal Way to Cook: Food for Thought".

Allow me to introduce myself: My name is Dianne Ward and I am a literacy instructor for the Thames Valley District School Board in Woodstock. Throughout the years I have taught many different students with intellectual and physical disabilities. Each time a student walks through my door, I know there is a challenge for me as a teacher; overcoming these challenges is always a new adventure.

A lot of my students have a desire to learn and were never successful in a mainstream program. They were teased and told they couldn't do things that a normal person could do. The result is they have lower reading and math skills, as well as low self-esteem. Fortunately, I struggled through school myself and later realized that there are many different ways of learning. One of the ways I embrace this in my classroom is through creative projects, which allows my students to utilize skills that are taught in daily lessons.

A project that I would like to share with you that my class worked on was writing about a role model in their lives. All of the students had to think of somebody in the community which they found to be influential. After each student decided on a person, we began writing poems to thank and honour them. When the poems were completed, invitations were sent out to the role models, inviting them to an afternoon where each student read and presented a copy of their poems and a rose to them. Some of the role models that were written about included: a bus driver, a cleaning lady, a store clerk, a bowling alley manager, a minister, and a counselor, just to name a few. Listening to each story brought tears to my eyes as my students were able to convey not only genuine feelings but words that thanked their mentors for being supportive and being role models in their lives. All of the mentors treasured their poems. So many people from the comunity left our event feeling proud and honoured and said they will always cherish their personalized poem. One lady said it was the nicest gift that she had ever received.

Everyone can learn no matter what age or what disability you have; the key is if you want to.

My program relies on one-on-one teaching and volunteer instructors. Our materials are relevant to the students' lives and their everyday living. Learning is a difficult process and when it is compounded with intellectual disabilities, it is amazing what my students can do. Through the years we have had many highlights and every day brings a new situation. This is one of the many heartwarming stories that I have experienced through my 15 years of teaching and I know the years to come will bring me many more.

Photo: Chicago 2016 Photos

We Got Lost on the Detour, Part III

2010-01-21T08:00:00.000-05:00

Part III of last week's post, We Got Lost on the Detour, Pt. II.
This post written by Sandra and Murray MacDonald.
Excerpt from "The Ideal Way to Cook: Food for Thought".

The Nature vs Nurture detour, on the other hand, was extremely gratifying and I believe, highly successful! I sincerely believe we cheated Nature (somewhat at least) and found that overloading on Nurture produced wonderfully educated, socially adept, very interesting and self-confident kids, not to mention many memorable family experiences. We have literally taken the kids everywhere and done everything while we were there. We spent summers doing eight-week road trips in a tiny VW camper, cruising throughout Canada and the U.S., from Florida to Alaska and from New England to Vancouver Island. We've poked our way through the Caribbean, Mexico and New Zealand. The kids have hiked into the inside of a glacier, canoed and portaged through God's country, trekked up mountains to see spectacular views, dug dinosaur bones in the Badlands, fished for salmon downstream from Kodiaks, floated next to big whales, panned for gold, spent hundreds of hours in museums and aquariums of every kind, watched sunsets over oceans, lakes and valleys, roasted a million marshmallows in campfires, swam with manta rays and sharks (the ones with small teeth!), cycled through national parks, swam in clean, clear, sparkling rivers and waterfalls, watched local history and stories unfold in interactive theatre, caught all kinds of critters in their dip nets, and met many strange and wonderful people along the way.

As a result, all our children, and especially Neil, have such a rich and varied general knowledge of geography, history, science and nature. Neil can understand and relate to a huge variety of subjects and topics, mainly because....he's been there and done that! He has loads of material to converse to others about and people marvel at all the tidbits of trivia he is able to discuss. Being able to have a decent conversation with others is a valuable skill when you are mentally handicapped.

In another effort to overload on Nurture, we got all the kids involved in many sports. We had no way of knowing how absolutely crucial to Neil's development this detour would turn out to be. In the last 20 years, he has played in hundreds of regular and Special Olympic games and competitions in soccer, baseball, floor hockey, as well as powerlifting, curling and downhill skiing. He's competed at provincial and national levels and been very successful. This has served to give him an enormous well of self-confidence. He is almost too confident!

There's nothing he can't do (according to him!). Teaching him how to play different sports has been a double blessing. Not only has it given him a powerful platform from which to continually draw self-assurance, but it has, time and time again, proven to be the most important social leveler he has. In integrated settings, his peers look at his facial features, assume the worst, and write him off. He joins them in a game, or races past them on the ski hill, and in the male world of machoism, they suddenly are forced to readjust their opinion of him. They immediately accept him into their circle, and now they are open to interacting with him. I sit back and smile. Life can be sweet sometimes!

Sports also provided us with our own personal detour. We learned to be Special Olympics coaches. For 12 years now we both have coached soccer, baseball, curling and skiing, and we've learned so much from our athletes. They always, always try their hardest and they love you to pieces for giving them your time. What else can a coach ask for?

We also decided when he was young, that Neil had to be included in everything we wanted to do as a family. We were not going to not do something because Neil couldn't join us, nor were we willing to leave him behind. More Nurture work. Don't make excuses for him; teach him how to do it! His siblings learned to ride a bike in less than a week. Four years later, running alongside of him and experiencing many face plants in wet, dirty ditches or crash landings into hedges or telephone poles, and umpteen scraped knees and hands, Neil finally managed to stay upright on two wheels. I thought it would never happen! We've ridden our bikes together as a family on many exciting adventures in so many different places. I am so glad we persevered.

It was the same for skiing. When the kids were teens, we wanted to resume that sport we so enjoyed before the kids were born, but would Neil ever be able to learn it? The other two were wonderful skiers after just one season. It took three years of me cajoling, and skiing backwards, holding his tips together, and him screaming, "I can't do it!", but eventually he was able to ski on his own and not cream anybody on the slopes. Ten years later, he won three Silver medals in the advanced race division at the Winter Provincial Games. He skies with us in the East and in the Rockies, on blues and on blacks. He's poetry in motion on his skis.

So it's a funny thing about road trips. You can sometimes get onto some pretty rough roads. You often find yourself having to detour, and then you get lost. Too many detours and you really get lost! God never made a GPS for the road trip of life. Our crashed road trip didn't suddenly end in 1982 as we thought. We're still trying to find our way back, so in a way we are still lost. But it's been one heck of a trip, so far!

We Got Lost on the Detour, Part II

2010-01-14T11:58:00.006-05:00

Part II of last week's post, We Got Lost on the Detour, Pt. I.
This post written by Sandra and Murray MacDonald.
Excerpt from "The Ideal Way to Cook: Food for Thought".

As a teacher, I knew that while some students learn faster than others, all students learn best through experiencing...by doing...using as many of their five senses as possible. Book learning is good, but doing is better!

I finally made a very pivotal decision that was to become my beacon of guidance, the central pillar of my parenting style. I resolved to quit teaching and instead, focus all my energy and attention to providing my children with as many hands-on learning experiences as I could possibly cram into their lives. I would have to live with the cards that were dealt me, but I became utterly determined to stack the deck against Nature by loading the dice in favour of Nurture. That decision gave me enormous strength and determination, guiding all our future plans and road trips.

As we stumbled down the winding ADVOCACY road, we found ourselves doing things we previously never dreamed of and certainly were never a part of our original road trip. In 1982, Murray and I formed the first Down syndrome parent support group in Ontario. The only way to learn more about DS was to learn from the experiences of other parents. The only way to discharge our emotional burdens was to lean on others who really understood our frustrations, hopes and fears. Years later we were also the founding parents of the Ontario Down Syndrome Association, which was an attempt to help organize the strength of 23 other provincial parent groups into a more politically active group advocating for Down syndrome. In 1988 we were founding members of the new Canadian Down Syndrome Society with Murray serving as their Chairman for many years.

I organized the very first conference on Down syndrome in Canada, designing it after the three American conferences we had attended. I brought in medical specialists from the U.S. and Canada to do seminars and workshops for over 350 parents and professionals. I chose McMaster University hospital to host the venue because not only did it lend an air of respectability and professionalism to the event, but I was also nine months pregnant with our third child. She was due the week of the conference and I rationalized that if all the stress of 10 months of planning were to bring on an early baby, I could just walk upstairs to the neonatal unit and deliver!

We fought bitterly and unrelentingly against two school boards to have Neil fully integrated throughout his entire schooling career. When the head of Special Education at the high school publicly berated me with "Your dream of having your son in a regular classroom is just a fantasy", it still hurt even though we were hardened veterans to this attitude. This necessitated Murray doing many years of night courses to get new qualifications in special education, co-operative education and guidance qualifications because the only way to really make sure Neil got a useful education was to make changes from within the system itself.

We showed many, many fearful teachers and administrators that integration was a bonus to all students involved, if it was structured properly and given a chance. The education advocacy road was an especially difficult one to travel down. It was 17 years too long, very lonely, and highly stressful, always going steeply uphill and constantly littered with formidable road blocks.

Photo: Neil MacDonald and his father, Murray MacDonald, standing in front of Neil's photograph, which was exhibited at the Varley Gallery (2009 Ideal-Way Art Show). Neil was 2nd place in the People's Choice Awards.

We Got Lost on the Detour, Part I

2010-01-07T07:00:00.000-05:00

This post written by Sandra & Murray MacDonald. Excerpt from "The Ideal Way to Cook: Food for Thought".

Have you ever been on a road trip where you sort of have a planned destination? Oh, you know you'll get there, but in the process of connecting the dots from start to finish you can choose several different routes. You know that depending on which road you do down, your trip can end up being wonderfully exciting and memorable or if you choose badly, it could be the road trip from...well, that place where it's very hot! But the one thing that is true for all long road trips, is that they are unpredictable...anything can happen at any time. Detours due to road construction, washed out bridges, bad weather ahead, etc., always wreak havoc with well laid plans.

When my husband, Murray, and I got married, we started planning and connecting the dots to map out an exciting route to live our new life together. Our final destination was retiring before 60 to live on beautiful Vancouver Island and traveling all around the world doing exciting things like skiing, sailing, canoeing, trekking, etc., etc. En route we would have fulfilling careers and four children. Our starting point was being unemployed teachers, but a couple of alternate routes eventually landed us jobs and our first new home.

The first major detour came with the conversation, "I'm going to be 30 soon and we haven't any children yet!" That detour was very bumpy but short and soon we were back on track with son number one in tow. The biological clock was still ticking loudly so another detour quickly developed with son number two arriving 18 months later. My second pregancy was uneventful as were the first four days of our new baby's life; he nursed well and was a happy and attentive baby. I was looking forward to returning back to teaching.

But on day five, our little family unexpectedly got rerouted onto a sudden detour. Actually, totally derailed would more aptly describe it! A doctor I had never met before walked into my hospital room and without introducing himself, matter of factly said, "We think your baby is a mongoloid" and promptly left the room, never to be seen again! I didn't know it at the time, but our road trip was now detouring down a very long, dark tunnel, with no light at the end. As each day passed, we got more and more lost on this detour. The road trip had crashed to a sudden halt, or so we thought. The next few weeks passed by in a blur of despair, guilt, profound sadness, fear, grief and an overwhelming sense of being lost and helpless. Well-meaning people would "console" us with "God gives special kids to special people" or "Just take him home and love him". My father's words when I told hm the baby had Down syndrome still ring cruelly in my ears..."He'll always be a stone around your neck."

Our family doctor could tell us nothing about a future prognosis. I hoped to get information from the McMaster Hospital medical library (no internet in the 80s). But the only three books they had were hopelessly dismal accounts about individuals in the 1940s who had lived in institutions their entire lives. Those books were the only information that training new doctors and nurses would get their information about Down syndrome from. I cried as I tossed them into a roaring fire in my fireplace. There were no recently written books to buy anywhere. My baby was mentally handicapped and I couldn't find any information to teach me to help him. A fog of fear, uncertainty, and hopelessness continued to cloud our route. As the weeks slowly stumbled into months, it often felt like we were riding an out-of-control roller coaster in that same dark tunnel.

Thankfully, I did not know that we would be detouring on that emotional roller coaster for the next 25 years.

A tiny ray of sunshine broke when our son was seven months old. We attended a three-day conference on Down syndrome in Chicago. We were absolutely overwhelmed when we walked into a meeting room to see 2,500 parents who all had children with Down syndrome! We were not alone on our detour. We attended workshops, seminars, lectures, presentations and social events, literally soaking up what felt like tons and tons of information and...hope!

There was so much we could do to help our son, Neil, to learn. That conference was a wonderful bridge, which helped us cross over troubled waters and find another detour down a brand new road called ADVOCACY. As we were to find out, that road was constantly littered with huge potholes, missing road signs, switchback turns, and sudden descents, but ultimately it took us, and continues to take us, higher and closer to our original road trip route.

Photo: xerezh

An Unsung Hero, Part II

2009-12-31T06:00:00.002-05:00

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.

An Unsung Hero, Part I

2009-12-24T06:00:00.004-05:00

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

2009-12-17T05:00:00.004-05:00

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

2009-12-10T13:20:00.004-05:00

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

2009-12-03T14:45:00.012-05:00

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

2009-11-26T15:17:00.007-05:00

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

2009-11-20T14:11:00.012-05:00

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

2009-11-14T09:20:00.011-05:00

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

"The IDEAL Way to Cook"

2009-11-05T13:57:00.008-05:00

“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.

Special thanks to Pearson Canada for without them, "The Ideal Way to Cook, Food for Thought" cookbook would not have been possible.

Parenting a Child with Special Needs, My View

2009-10-06T09:10:00.000-04:00

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.

What Do You See When You Look in the Mirror?

2009-09-29T11:23:00.010-04:00

"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

A Medley of Posts

2009-08-11T11:20:00.004-04:00

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 Dogs – Service dogs, and various organizations that provide them.

I Have a Voice – Information 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°°

Challenging Popular Myths About Autism

2009-07-22T07:59:00.001-04:00

This post was written by guest blogger, Rachel Cohen-Rottenberg, who publishes the blog “Asperger Journeys: Reports from Life on the Spectrum” at 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,

Kids Can Make a Difference

2009-07-15T09:56:00.011-04:00

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:

visited the elderly in nursing homes. We bring homemade cards for them, and fresh cookies;
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!
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:

Bake Sale
Neighbourhood Flea Market
Costume Ball
Read, Dance or Walk-a-Thon
Talent Show
Art Show
Poetry Reading
Community Auction
Car Wash
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

Summertime, and the Living is Easy

2009-07-03T16:26:00.006-04:00

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

The Gift of Alone Time

2009-06-24T08:50:00.005-04:00

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?

What's on Your Wish List?

2009-06-17T11:11:00.014-04:00

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.

(See the Disability Funders Network)

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:

You've Always Had the Power

2009-06-01T10:37:00.034-04:00

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?

What Will I Write About?

2009-05-19T18:00:00.011-04:00

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

Unite for Hunger and Hope

2009-04-28T16:31:00.014-04:00

Today is Bloggers Unite for Hunger and Hope Day. Along with thousands of other bloggers, today's post is about world hunger.

When I woke this morning, I could hear a loon calling to its mate, birds chirping outside my window...and my stomach growling - a signal that I shouldn't even think about lounging in bed another minute.

As I sat at the table with a bowl of granola, I read an online letter to the editor of a local paper about the need to reduce bus fares for the intellectually disabled. As the author of the letter said, "As a society, we fully know that some people are unable to work at high paying jobs and pay a high cost of living. When the cost of living has gone up, the income for these intellectually disabled people does not rise like other employees. In poor economic times, they have less to spend than the rest of us."

I couldn't help but wonder that if, as the author noted, some people "have less to spend than the rest of us", what other essentials are they missing in their lives?

And just how many people are therefore living with long-term hunger? It struck me that hunger is not something I need to worry about. We've all gone hungry, from time to time, but I have never experienced long-term hunger. The kind of hunger that, according to the Freedom From Hunger website, "negatively affects people’s health, productivity, sense of hope and overall well-being. A lack of food can stunt growth, slow thinking, sap energy, hinder fetal development and contribute to [intellectual disability]."

Let's face it, I've lived a pretty cushy life, my body untouched by the ravages of hunger. Elsewhere in the world, "This year (as every year) 11 million children younger than 5 will die needlessly, more than half from hunger-related causes.

815 million people in the developing world are undernourished. They consume less than the minimum amount of calories essential for sound health and growth."

Closer to home, over 700,000 Canadians are assisted by a food bank every month, and The Daily Bread Food Bank notes that "47% of clients accessing a food bank have a disability or serious illness."

So...What can one person do to help millions of starving people all over the world? When you put it that way, it sounds overwhelming. But maybe one person can reach out to help one family.

Food Banks Canada urges us to work together, for "individuals and organizations do make a difference. By lobbying, working for change and raising awareness of the hunger problem, progress has been made towards both short and long-term solutions to hunger in Canada."

The Cleveland Food Bank came up with a list of creative special events - ideas that would be easy to implement, either in a business, nonprofit, or as an individual.

BAKE SALE: Have employees donate baked goods and sell them to others in the company or to neighboring companies. Inform neighboring companies of the sale and invite them to participate.

DRESS DOWN DAY: This event is perfect for companies with formal dress codes. Participants pay $5, for example, to dress down for a day. Pass out buttons or put up signs that display the reason for dressing down.

RAFFLE: This is perhaps the easiest way to raise money. You sell tickets for a chance to win money or a prize. When all tickets are sold, select a winning ticket at random. The most effective way to raise money is through a raffle of donated prizes. Ask your vendors or clients to contribute!

AUCTION: Have employees donate anything from a home-baked pie to a weekend at their vacation cottage. You can also solicit donations of gift certificates and other items from area merchants.

LUNCH : Sell pizza and pop for lunch one day. A local restaurant might donate the pizza or sell it to you at a reduced cost for your cause. Ask for donations in writing and follow-up with a phone call.

CONTESTS: Promote competition between departments by holding different contests. Whichever department collects the most food wins a lunch or ice cream social. One company holds a "Food Collection Display Decorating Contest".

COOKBOOK: Produce a cookbook featuring employees' favorite recipes. Sell them to employees, customers, vendors and friends.

COIN WARS: Plan a penny war at your organization. Each department collects change in a container. Employees throw bills into the container of another department in order to "cancel out" that department's change. In other words, change in the container equals positive points, bills equal negative points. The team with the most positive points at the end of the war wins.

If none of those ideas appeal to you, then consider making a secure, online donation to your local foodbank.

What have you done in the fight against hunger? I've given a few suggestions, but I'd love to hear from you.

I'd like to end this post with an excerpt from The Perfect Pantry, which says it all:

ENDING CHILDHOOD HUNGER IN [NORTH] AMERICA

An inspirational and achievable goal. Recipe adapted from Share Our Strength. Serves 12 million children.
Ingredients:

Volunteers with soul
Event participants with interest
Chefs and restaurants with heart
Corporations with a conscience
Local organizations and partners with vision
YOU!

Combine a huge desire to help end childhood hunger with a dash of inspiration. Blend with volunteers, chefs, corporate partners and event participants. Generously add perseverance. Taste and adjust ingredients as necessary.

Serve with a bold, innovative and unique national hunger strategy to surround every child with nutritious food where they live, learn, and play.

Include state and local governments, organizations and nonprofits who can help families help themselves by increasing access to the public and private programs that can provide food to those who need it.

[This bold yet achievable recipe is best served with hope. With your help, we will end childhood hunger in [North] America. To learn more, visit http://www.strength.org/.]

Get Swept Away

2009-04-21T18:01:00.011-04:00

Yesterday, I sat by the kitchen window and looked out at the wind. Not the wind, itself, of course, but the tall trees bowing low, the clothesline shuddering against an unseen force.

The world seemed out of control, the normal balance upset – a mirror of how we sometimes feel when our lives are torn apart, or we're just feeling 'out of sorts'.

The windstorm gave me an excuse to revisit my favourite place in the house. I like to sit at the table, sipping my morning coffee, my to-do list on the back burner, at least for a while. I haven’t been doing enough of this lately. And by ‘this’, I mean taking the time to merely observe. Listen, watch, and bask in the moment. Deer, chipmunks and raccoons have been visiting us, enticed by the carrots and corn strewn over the ground. But the animals have wisely stayed home – the wind’s sound and fury sending them scurrying for cover.

The white noise of the wind buffeting the house was oddly comforting, and it lulled me into a peaceful state of mind. I closed my eyes.

I wanted to think about a long stretch of beach. Toes buried deep in powder white sand and cloud streamers scrolling across a cobalt blue sky.

Instead, my ‘shoulds’ reared its collective ugly head:

Stop wasting your time...You should be writing! You have a blog post to work on, and it’s not going to write itself…

Lately, whenever I pick up my pen, it feels like the words have a weight of their own, unwieldy and cumbersome, they fill up the page but like the wind are all “sound and fury, signifying nothing.” Or, at least that's how it seems.

I went back to the beach, in my mind, and thought about Susan Boyle. The woman who was not afraid to stand on a stage – in front of an unsympathetic audience and less-than-thrilled judges on the TV show 'Britain's Got Talent' – and belt out her song. She belted out her truth, her dream, and her vision. If there were any doubts, shoulds, or what ifs, they were left in the wings.

Why are we drawn to this kind of story? Never mind that we loved seeing various shades of shock and awe on the faces of those who had just derided her, or were entranced by her undeniably beautiful singing voice.

Is it because we like to live vicariously through people like Susan Boyle? She embodies everything we'd love to be, and her message to the world is powerful and life-altering: never mind what people think about you; ignore your own inner demons; and, most importantly, never give up on your dream.

That’s especially good to know on those days when you feel swept away by events in your life. When the storms hit and you need a sanctuary, a place to go where nothing else matters but the high of living out your dream.

What about you? Where do you go when you feel overwhelmed, swept away, and not exactly in control of things? Do you paint? Sing, dance, write poetry?

(P.S. If you write poetry, take the plunge and submit your work to Ideal-Way. The IDEAL Poetry Contest opened on April 1st and ends June 30th. Any persons with an intellectual disability living in Canada at the time of entry are eligible for the contest. There, you’ve just taken your first step towards shaking off your doubts and fears!)

Here's another inspirational story:

Photo credit: FotoRita [Allstar maniac]

It's All About the Art

2009-04-08T12:43:00.018-04:00

Neil MacDonald, on the left, one of the finalists in the 2009 Ideal-Way Art Show, with his photograph of a canoeist on a lake.

When was the last time you had a gasp-of-awe moment? Maybe you were in a canoe, first thing in the morning. You were deep in thought… or possibly in a meditative state, all thoughts safely shelved for now. You turned a corner, and there it was: the dawn’s early light spilling its colours upon the water. And you gasped in awe. A transcendental moment you will never forget.

The word ‘transcendental’ is described as “being beyond ordinary or common experience, thought, or belief.”

There’s something about a transcendental moment: when you are immersed in it, everything falls away.

As I stepped into the Varley Gallery’s Eckhardt McKay House in Unionville, over the weekend, a wave of something akin to the early-morning canoeist’s discovery washed through me.

I already knew that the best 70, of more than 500 entries, in Ideal-Way.ca’s First Ever Art Contest for Persons with Intellectual Disabilities would be on display. It was the energy in the room that I wasn’t prepared for – the creative energy that drew over 1,000 visitors, and busloads of winning artists with their families, friends, and caregivers, from all across Ontario, to the hallowed halls of the Group of Seven artist, Frederick Varley's historic 1840s home/studio.

As Don Yeo, the CEO of Ideal-Way said, “we welcomed eyes which were wide with amazement and mouths agape in awe."

Mark Fitz-Gerald, our winning Artist VIP volunteer from Ottawa, told us, "I came to see my art at the Show and I left with a new family."

But something was missing. John Vicic, one of the artists, made his way to the over-sized canvas that was set up specifically for the intellectually disabled artists visiting the show. Paint whatever you want, we told them. John had stepped away from the crowd, and as he took up the brush, he entered into another place.

And that’s when the penny dropped. When an artist is in the creative moment, everything else falls away, but the Inner Editor never leaves his or her side. Its voice shadows the artist, and whispers, “Is that the best you can do?… Your last piece was much better…let’s face it, you’re losing it…”

The missing piece from this Art Exhibition was a lack of creative angst. The 'ego' was nowhere to be found. Each of these artists showed up in the creative moment, and asked no questions. As one artist said, “My art is all about freedom. I’m free when I paint.”

It was a life lesson for every person in the room. The artists were not interested in external validation. They did, however, offer encouraging words to the other artists.

Imagine, it was all about the art. Period.

I’d love it if you would share your experiences — your stories, family photos, or home videos.

What happened when you dared to let the paint fly, or you picked up the camera and captured a moment?

Spread the Word to End the Word

2009-03-31T14:15:00.004-04:00

Today is "Spread the Word to End the Word" campaign. The goal is to "make people stop and think about their hurtful and disparaging use of the word 'retard.'" Check out the Special Olympics site for ideas on "How to Take Action." Or, go here to "pledge and support the elimination of the derogatory use of the r-word from everyday speech and promote the acceptance and inclusion of people with intellectual disabilities."

In her blog post today, Terri Mauro said, "In the spirit of ending the "R Word" in all its forms, I'm going to be spending some time today removing "mental retardation" from my materials for parents, replacing it with "intellectual disabilities." The term has become too tainted by the slang slurs derived from it that I'm not comfortable using it, and since the Arc and Special Olympics seem to have adopted "intellectual disabilities" to describe the diagnosis, I'll follow their lead."

In Barriers, Bridges and Books, the author eloquently describes "the Spread the Word to End the Word campaign (as)a vision of respect and they are using the tools of education, media, and more to respond every time and cut away what does not belong in that vision."

Tomorrow, The Spread the Word to End the Word campaign will be over. But that doesn't mean we can't brainstorm together and come up with our own how-to-take-action ideas. What can each of us do to spread the word?

Art Show 'A Wonderful Bridge to Inclusion'

2009-03-14T13:30:00.006-04:00

The article below appears on the Community Living Ontario's website and is written by Natalie Miller.

About 100 original works will be on display at Unionville gallery
Friday, March 13, 2009 -- by Natalie Miller

From large, colourful abstract paintings to three-dimensional sculptures, an upcoming art exhibition will showcase the diverse works of Ontario artists who have an intellectual disability.

IDEAL-WAY, a non-profit organization that supports people who have an intellectual disability, received more than 500 pieces of artwork through its first province-wide art contest. Of the 500 entries, a juror has selected about 100 pieces which will be on display in the McKay Art Centre at 197 Main St. in Unionville next month. The IDEAL-WAY Art Exhibition runs from April 1 to 5.

Both the IDEAL-WAY and the art contest's juror are impressed with the calibre of the work submitted and optimistic about the potential impact of the show.

"After seeing the works, it confirms my opinion that art is beyond disability," says Andrew Hamilton, juror, Canadian landscape painter and fine arts professor.

"The artists who participated showed dedication and overcame many obstacles. While art provides an outlet it is predominantly a soul-searching exploration."

IDEAL-WAY says as an organization it is experiencing "widespread excitement at the number (of entries) and delight at the high quality.

"We are humbled by the response from all corners of Ontario," says Addie Daabous, executive director.

"This validates our beliefs in 'seeing ability in disability.' We were also impressed with the effort that so many organizations, schools and families put into supporting the IDEAL-WAY art contest."

Daabous notes several Community Living associations helped promote the contest and as a result IDEAL-WAY received entries from communities including Toronto, Thunder Bay, Huronia and Lennox and Addington.

While the art show is intended to provide an opportunity for people to showcase their work in a gallery setting, there is also an education component as well, Daabous notes.

"We hope to engage communities throughout the province to see what (people) can do rather than what they cannot do. The IDEAL art contest is one example of IDEAL-WAY's unique approach to positively re-educating mainstream society by publicly empowering (people who have an intellectual disability)."

Daabous says, for instance, while there may be one or two students from a particular school who have a piece in the show, their entire class, which includes students who don't have an intellectual disability, are attending to support their peers.

"This is a wonderful bridge to inclusion. These exceptional individuals have talents which the average mainstream person may never otherwise know. We are all equal, only different, and we all have our unique gifts."

One hundred per cent of any proceeds from the show, including works sold, go directly to the artists.

Admission to the show is free.

If you have feedback on this article, e-mail natalie(at)axiomnews.ca or call the newsroom at 800-294-0051.

Reprinted from Community Living Leaders, an online news service of Community Living Ontario. www.communitylivingontario.ca.

A Social Survey for Social Causes

2009-02-05T17:32:00.001-05:00

Thank you, Qui Diaz, Beth Kanter and Geoff Livingston, "who are working on a special project, dubbed “Philanthropy 2.0″ to provide non-profits the information they need to best serve donors and advocates with meaningful conversations about their causes." Check out this blog post, "and take the survey. Give causes the information they need to best serve your desires for a smarter, better nonprofit industry that gets the social web. We’ll also give away ten copies of Now Is Gone by Geoff Livingston with Brian Solis to people who leave extra insights and feedback in the comments section. The most interesting comments will be selected."

A Social Survey for Social Causes

Resolving to Help

2009-01-12T10:38:00.003-05:00

As the chaotic holidays came to a close, I have found myself keeping the time honoured tradition of trying to come up with a New Years resolution. Almost every year, I make grand plans to lose weight, try new things, spend less and exercise more. By January 30th, these resolutions have all been put on the shelf for another 330-odd days, as the couch and potato chips beckon.

I found myself wondering why my resolutions typically don't work, and why very few people keep their resolutions. I realized that I have never made a resolution that involved anyone but myself. My resolutions always focused on making myself better, rather than making a contribution to someone else.

Over Christmas, around 20 IDEAL volunteers spent a day giving their time and energy to 250 special persons at 3 events. Presents were given by 'Santa' and his elves to these very deserving individuals, who were given an opportunity to celebrate the holidays a little early. By the end of the events, I was told that the energy in the rooms was tangible. The events were considered a great success by all involved, and plans are already underway for next year's events.

My New Years resolution this year is a little different from last year's. It isn't about trying to improve myself, but about giving a little more of myself this year. I'm not planning to radically change my life, but the IDEAL events next year will definitely have one more set of hands to help. That's a resolution I can keep.

J-Mac's Story

2008-12-04T12:43:00.002-05:00

Autistic Kid - Incredible Basketball Player - Click here for the most popular videos

Just Show Up is Under Construction

2008-11-25T11:02:00.004-05:00

I'm handing over the reins of Just Show Up to an exceptionally talented crew at Ideal-Way.

Please, if you have a moment, we would appreciate your ideas, comments, or suggestions on what to include in future entries.

Thank you, all, for taking the time to visit Just Show Up. I've enjoyed the whole blogging experience - especially the wonderful conversations I've had with you, the reader! - and I'm grateful that we have a dedicated group of people who are eager to wield a paintbrush, scalpel, and carving tool. I can't wait to see the refurbished Just Show Up!

Brain Power

2008-11-09T08:23:00.007-05:00

The other day, my husband and I decided to play hooky. It was a perfect day - a robin's egg blue sky, with faint smudges of cloud - the kind of day that makes it easy to be grateful. As we chatted, reminiscing about the first time we met, it struck me that except for a couple of times in my life, I have always possessed the power of speech. Speaking has always been as effortless as breathing, and I was suddenly filled with a deep gratitude for this gift.

Well, no doubt my epiphany was partly the result of reading 'My Stroke of Insight', by Jill Bolte Taylor, a moving account of one woman's journey into a "world between worlds." In the space of four hours, the author was unable to speak, read, write or recall any of her life. As Taylor said, her stroke essentially left her severely mentally ill, without the ability to articulate her thoughts or feelings to the outside world.

A few months ago, I watched a video about Carly, a severely autistic and developmentally delayed teenage girl, who up until a couple of years ago was unable to communicate with the rest of the world. Unable to speak, she took matters into her own hands, and slowly began to type her thoughts into a computer. The computer was a portal into a world where communication is possible. For a girl who had never uttered a word in her life, this was freeing.

Carly revealed to the world how it feels to be autistic. For the first time, Carly was no longer being talked at - she was taking the reins and sharing her story. Carly's father expressed gratitude that they were able to provide a means for her to not only speak, but communicate with others. Until then, no one around her knew how she felt about anything. Why she habitually hits herself, or makes odd noises, for example. Her family members were desperate to get a glimpse into Carly's interior world. Typing slowly, she revealed how she wanted to be treated, and explained that "it's hard because no one understands me." The computer became her voice and the message she sent was simple: Never give up.

Last Sunday, I thought of Carly as I watched 'Brain Power,' a segment on 60 Minutes. At 40, Scott Makler was diagnosed with ALS. Unlike Carly, Scott is unable to type, but just like her, he is unable to speak. Now, believe me, I know as much about neuroscience as I do football (read, next to nothing). So I couldn't quite wrap my mind around the sight of a man seated in front of a computer, wearing a cap studded with white circles, eerily reminiscent of 'Brainstorm'.

Scott Makler's brain was directly connected to the computer, and the white circles (electrodes) picked up faint electrical signals from his brain and relayed them to the computer. The computer flashed random letters on a screen, and Scott concentrated on each letter, finally creating whole sentences. The computer revealed Scott Makler's thoughts, allowing him to once again communicate with those around him. His wife said, "he's happier now." This new technology has given him back his independence.

It begs a question: What could this new technology mean for an intellectually, as well as physically disabled person? It saved Scott Makler's life, literally. Before having his brain hooked up to a computer, Scott had made a decision. He would never use a ventilator to help him breathe. Now that he is able to go to work, and communicate his needs, wants, and dreams to his family, he is on a ventilator. "I can communicate with them now," was his answer when asked why he changed his mind.

As an autistic adult wrote in his blog, This Way of Life, "speaking isn't what is important - communication is. Besides the differences in the actual mechanics of speech, there are also the problems I have communicating my desires and needs. It is very, very difficult for me to ask a simple question such as, "Can you turn down the TV?" I might be near meltdown, due in part to a loud TV, but I can't actually communicate a need that I have. This is why developing communication is so much more important than developing speech."

Perhaps my gratitude for the ability to speak should also encompass all of the technology-based tools that exist at this time. For as Carly and Scott Makler observed, it's all about staying connected with those around you, by whatever means are available.

Watch CBS Videos Online

So You Want to Be an Actor?

2008-11-02T09:27:00.016-05:00

Kaleidoscope Theatre (taken from here)

Acting is one of the most competitive industries in the world. If you are developmentally disabled, and putting on plays for family and friends just doesn't cut it, then how would you go about making your dream a reality? Last week's post got me thinking about the type of person who simply won't take no for an answer. Diane Dupuy, founder of Famous PEOPLE Players, believes that everyone has a creative core within them just waiting to be mined. In 1974, she was determined to share her dream with the rest of the world. For six months, she battled against naysayers, who repeatedly told her, "You simply don't understand that they are not capable of doing the kind of work you describe."

Daniel Day Lewis said, "The thing about performance, even if it's only an illusion, is that it is a celebration of the fact that we do contain within ourselves infinite possibilities."

Gail Williamson, the Executive Director of the Down Syndrome Association of Los Angeles, spends her downtime fighting for the rights of performers with Down syndrome and other disabilities. "You can't take 'no' as the final answer," Williamson said. And so, she set out to create an online service to locate talent with developmental disabilities. The Down Syndrome in Arts & Media Website "connect casting directors with actors, but event planners will be able to find public speakers and entertainers, set decorators will be able to find visual artists with unique one of a kind art, and publishers will be able to find poets and writers, all who have DS or other developmental disabilities."

Alliance for Inclusion in the Arts is working to increase awareness and "enhance opportunities for people behind the scenes as well, such as all the talented disabled writers, directors, editors, etc. whose talents often go unrecognized." One member said, "It's ambitious, but it's shocking we aren't better represented in today's world."

But if your heart is set on being on the other side of the footlights, there are avenues open for developing your gift. DramaWay, an organization based in Toronto, Ontario, provides innovative drama programs for those with special needs. Danielle Strnad, founder of DramaWay, was inspired to create a place where people of all abilities are encouraged to explore their creative potential. "Using dramatic techniques, participants are led down the paths of discovery. Participants are given the opportunity to engage in drama and other art forms." DramaWay helps aspiring actors to explore the process of creation, for it is the creative journey, itself, that leads to personal growth. They "believe that drama allows everyone the opportunity to connect with others in their community, and to learn about themselves while doing so." Workshops and structured sessions are offered, all in the name of improving social skills, increasing self-confidence, and enhancing communication.

In the U.K., The Kaleidoscope Theatre was founded almost 30 years ago, the first theatre company of its kind. The founders "have a passion for theatre, because they believe in high standards of performance and in quality of life and, above all, because they have a love and high regard for one another." Most of the performers have Down syndrome.

All but five of 41 cast members of Jerry's Habima Theatre, in Atlanta, Georgia, have developmental disabilities. One of the actors in this year's show said, "It's challenging every day to do things. But this shows people with disabilities 'you can do it.' " Don't take no for an answer.

For more information, go to:

Theatre companies:

THE BAKED BEAN THEATRE COMPANY
Wild Swan Theatre

Performing arts organizations:

AbleArts
The Centre for the Arts in Human Development, Faculty of Fine Arts of Concordia University
Heart and Halo Talent
Performers with Disabilities

In the News:

Down Syndrome and the Acting Gene, BellaOnline
Film with Down syndrome cast tweaks taboos - “What Is It?"
‘Rising Stars’, L.A. Times

Drama Therapy:

Dramatherapy Network
Information

Famous PEOPLE Players

2008-10-24T18:37:00.018-04:00

Famous PEOPLE Players founder Diane Dupuy. (Image copyright Famous PEOPLE Players)

Every year, it's the same thing. I start my Christmas shopping early, usually right after the kids make their way back to school. I do this for the same reason most early-bird shoppers are pounding the pavement, or rather the floors, of every mall in a 100-mile radius, right after Labour Day. There's a veritable smorgasbord of the choicest merchandise, coupled with the heady pleasure of shopping without the nail-biting anxiety of being stampeded on the way to the checkout counter.

Over the next few months, I spend countless hours second-guessing my choices, finding fault with almost every item. Miraculously, this year, I managed to avoid all that nonsense, and was amazed that perfectly acceptable gifts fell like manna from the sky. There's only one person standing in the way of my victory dance. My mother. She has told me more than once that the last thing an 80-year-old woman needs is more stuff. So, forsaking the usual trek to the mall, I went online, instead. My mother has a passion for live theatre. Why not give her the gift of a night out on the town? I reasoned.

After pouring over dozens of websites, I finally spotted the perfect gift: The Famous PEOPLE Players Dine and Dream Theatre. I've never had the pleasure of sitting in a darkened theatre to watch a black light puppet show, and neither has my mother, I'm certain. My curiosity piqued, I began to excavate the world of FPP. (One of my first finds was a blog that included a reference to "this video about Famous PEOPLE Players, arguably Canada's most successful puppetry troupe.") My knowledge of FPP was sketchy, at best. Thanks to Special People, a Canadian TV-movie I saw over 20 years ago, I do know that a young social worker (Diane Dupuy) had a Big Dream. Armed with little more than drive and ambition, her mission was to create something that would scream to the world, "Our lives have meaning and we can do anything!"

A unique black light theatre was born, providing the perfect backdrop to "integrate the developmentally challenged into society by toughening and strengthening our people to prepare them for the outside world." Dupuy was on fire to create a non-profit organization which would employ people with physical and mental disabilities. "Those individuals share duties in dining room management, arts administration, and theatrical and visual arts performances."

More than simply providing employment for the developmentally disabled, Dupuy set out to "promote, educate, and train them for the Famous PEOPLE Players dinner theatre and instill in the hearts and minds of everyone that dreams can come true when you believe in yourself." Dupuy was a force to be reckoned with, and although faced with tremendous pressure to give up on her dream, she forged ahead.

She walked the walk, and in her motivational speeches, she encourages all of us to "Dare to Dream, Reach for Excellence, and Believe in Yourself." For Dupuy, these are not just empty words, but a call to take action against indifference, intolerance, and resistance to change.

Famous PEOPLE Players is living proof that there are no limits to our creative reach, our dreams have no boundaries, and anything is possible if you dare to think outside the box.

We all have the potential to work magic in the lives of others, but we need to work as a team. "If you want to make a stand, help others make a stand, and if you want to reach your goal, help others reach their goal. Consider yourself and treat others accordingly." Confucius.

Famous PEOPLE Players would have remained a pipe dream had it not been for Dupuy's belief that the larger community is deprived of immeasurable gifts when the intellectually disabled are excluded from it.

It's based not too far from me, in Toronto, Ontario, and tours around the world. Christmas is right around the corner, as my kids never fail to remind me. For now, I can put my feet up on the coffee table and relax. On Christmas Day, my mother will not be opening yet another dust collector destined for the crawlspace. Instead, she'll be looking forward to a trip downtown, where she and I will sit in a darkened theatre watching a premier black light theatre company light up the room.

One Person at a Time

2008-10-15T09:37:00.009-04:00

"Like slavery and apartheid, poverty is not natural. It is man-made and it can be overcome and eradicated by the actions of human beings." Nelson Mandela

Every now and again, I pull out my clay jar. I've been working on it for most of my life, and I suspect it'll never be done. I started it when I was a child. Since then, my jar has undergone many changes. Thanks to many hours of painstaking, backbreaking work, my clay jar has morphed from a tiny lumpen mass of brown goop to a breathtaking vision of loveliness.

I've shaped, molded, and finally perfected my jar. Or at least, my vision of it is clear and unobstructed. Now, as I stand back and survey my creation, my fingers get itchy again. Scratching the surface isn't good enough. I need to get into the corners and scour deep within it. After all, this is my Dream Jar Secret Hiding Place. Kind of like the jars you keep in your kitchen that hide money or important documents. Only, this jar contains my Big Dream.

In an earlier post, I talked about my penchant for performing in front of my bedroom mirror. But, like my imaginary tiny lump of clay, the dream of being a stage performer was really the first blush of a much grander fantasy. When it comes right down to it, all of us just want to do something of substance. We want to make a difference in the world.

Well, today is Blog Action Day - a day when over 7,000 bloggers will unite to "stand up against poverty," so to speak. It's an initiative to "change the conversation." To change the tired voice within that whispers in one's ear, "Me? What can one person possibly do to change the world?"

On October 17-19, 2008, Stand Up Against Poverty - International Day for the Eradication of Poverty will be in full swing. "This year, the main focus of Stand Up is Take Action, to ensure governments worldwide hear our demands to end poverty and inequality. Last year, more than 76,000 Canadians took part in more than 500 Stand Up events across the country. They were part of a mobilization against poverty that had more than 43 million participants worldwide."

I read that "a number of surveys have found that children at the lower end of the socio-economic scale had poorer health and developmental outcomes than children in the middle, and that children at the top of the socio-economic scale had better results still." In developing countries, "98% of children with disabilities receive no education, and 26 million people with an intellectual disability live on less than $1 a day."

Sometimes our knee-jerk reaction is to pull back in horror. "It's too big...too pervasive...so what in the world will it matter if one person performs one action?" I can hear my own voice whimpering in the dark, the covers pulled over my head.

"Simplify, simplify," said Thoreau. "One step, one action, today, is all it takes!" What is the one step, one action, I could begin putting into motion? If I have a passion for children - specifically special needs children - but I'm overwhelmed, confused, frozen in place by too much information, maybe I could join an organization that's focused on helping to change attitudes, to educate, and positively improve, mainstream social attitudes. Group lobbying, or sending out e-mails, faxes, letters to the government. Give blood, or organize a free lunch/food distribution. Many organizations have campaigns that focus on making poverty history. The Stand Up Against Poverty website has a list of "actions/activities aimed at development/welfare; petitions and communications/popular education; and mass action/popular mobilization/dissent."

As for me, my clay jar is only half full, I realize. I still have a long way to go, and time is running out. Today, though, I can take one step. It's time to "take action to end poverty and inequality, one person, one step, one heart, at a time."

(See also Poverty in Canada: The New Reality Facing Canadians
Dawn Ontario Disabled Women's Network Ontario
Grow Up Free from Poverty

This post is a part of Blog Action Day '08 - Poverty

Dare to Live a Life of Adventure

2008-10-03T11:27:00.009-04:00

I can remember biting my nails down to the stubs when my 15-year-old daughter went on a mountain climbing expedition in British Columbia, scaling frighteningly high peaks with other equally hardy members of Outward Bound. My nails got a little bit shorter when she later battled the Dumoine River on a whitewater canoe trip. And then again when she eschewed skiing in favour of snowboarding. On moguls. At night. I guess I should be grateful bungee jumping "from the skid of a helicopter into the gaping maw of a bubbling active volcano" isn't on her 'Top 30 Things to Do Before You Hit the Big 3-0' list.

Of course, I want my grown children to know one thing: life is meant to be an adventure, not an endurance test, or a game of mere survival. So one part of me is thrilled when they dare to seize the moment, inviting risk, change, and possible failure into their lives. This is every mother's nightmare, and yet every mother's dream for her children.

Over the years, I tried not to discourage my kids' desire to push the envelope, even when my motherly instincts were on high alert, and all I wanted to do was go back in time, back to a time when they were never out of my sight. But children who choose to colour outside the lines often show a greater than average amount of creativity, imagination, and courage. So, more often than not, I lifted my chin, threw back my shoulders, and learned to applaud their walks on the wild side. Besides, ever-so slightly dangerous sports were a perfect outlet for the adventure-seeking streak in them.

There is now an unprecedented array of activities for thrill seekers - and for people with disabilities, there are plenty of opportunities for experiencing high-challenge sports. According to AccesSport America, whether it's soccer, or skiing, water sports, such as "windsurfing, kayaking, rowing/sculling, outrigger canoeing, surfing, water-skiing, or kite sailing, or rock/wall climbing, tennis, and cycling, the aim is to create higher function and fitness for children and adults of all disabilities through high-challenge sports. Programs are designed to promote each person's highest physical and athletic potential while cultivating social and emotional well-being. They seek to create a community where differences are diminished, blurred and often erased."

As I watched a news report about a ski program for children with Down syndrome, autism, etc., and read about a man with Asperger's who swam across Lake Ontario, and the three men with autism that scaled Wales' highest mountain, it got me thinking about what it takes to climb a mountain, battle raging rapids, or windsurf across the water at full speed.

Aside from the joy and sense of accomplishment they derive from mastering a new skill, adventure seekers of all abilities experience the high of constantly pushing beyond one's supposed limitations. They are living their lives with gusto, and doing it from the heart. Sure, it's a cliche that life is not a dress rehearsal. This is the main event, etc. But people of all abilities just want to be included in this joyride called life. Life is short. So, as for me, I'm kicking up my heels, strapping on my skiis, and paddling through thrilling rapids. Yeee-ha!

Horse Therapy

2008-09-26T14:42:00.009-04:00

I can count the number of times I've been on a horse. Truth be told, I've never been on one. A few years ago, my youngest daughter took horseback riding lessons. I stayed as close as I dared while she rode the horse picked out for her, but I was never tempted to scale the mighty mountain of a horse.

Even as a child, when I crouched under my bedcovers and read Black Beauty into the night, or years later, as I breathlessly watched Robert Redford effortlessly work his magic in The Horse Whisperer, I was determined that "East is East, and West is West, and never the twain shall meet."

My daughter, thankfully, had no such reservations about hopping up on one of these magnificent beasts. As I tiptoed around them, she learned everything she could about the care and feeding of horses. She cleaned their hooves, spent countless hours brushing them down, and in no time at all, she was able to prepare a horse for riding in a matter of minutes.

I stood in awe as she even managed to win a battle of wills with one particularly rebellious stallion. In the end, they became fast friends. This shouldn't have come as a surprise. The horse is a social animal, forming strong bonds with members of its herd. As I stood at a safe distance, it became obvious, too, that horses possess almost a sixth sense, picking up on subtle social cues. If my daughter was feeling 'blue,' her new best friend dropped his rebel-without-a-cause routine and became gentler with her.

As a result, her self-esteem increased dramatically during the years she spent with him. She grew into a confident woman, devoid of body image issues, and always eager to climb another mountain.

I found it interesting, therefore, to read that "riding horses can help the disabled physically, by strengthening muscle tone and learning balance. But, riding also increases self-confidence and awareness of one's body, according to those involved in horse therapy programs." Hippotherapy (the word 'hippotherapy' comes from the Greek 'hippos,' meaning horse and 'therapy,' meaning care. Thus, hippotherapy is the utilization of the horse for therapeutic purposes rather than equestrian goals. Source: The Canadian Therapeutic Riding Association) "may also affect psychological, cognitive, behavioural and communication functions for clients of all ages. Clients who may benefit from hippotherapy can have a variety of diagnoses: examples include cerebral palsy, multiple sclerosis, developmental delay, traumatic brain injury, stroke, autism, and learning or language disabilities."

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.

My daughter asked me recently if I'd be interested in taking riding lessons with her. Maybe it's time to befriend my own Black Beauty, and take a page from others who have benefited from the deep connection they've forged with horses. Time to get off my high horse, for who knows, maybe this will be another golden opportunity for another mother-daughter bonding experience.

Art as Healer

2008-09-19T10:44:00.008-04:00

Neil MacDonald

I have a confession to make. I still get a kick out of getting down and dirty with anything resembling goopyness. Whether it's Playdo, cookie dough, or good old-fashioned mud from the garden, I'm in heaven. Not that my creative urges are expressed through the medium of art - my inner editor continues to slink in the room whenever it sniffs out a primal urge to throw paint on canvas - but there's something...well, fun about letting go of my daily to-do list and allowing the kid in me to play.

My daughter and I took a beginner's art class together last year. We chose to do this because as grownups, neither one of us had dared to bare our souls on paper via the paintbrush. But there's something exhilarating about throwing on an old shirt and letting the paint fly. (Literally. I went through three of my best pants before finally realizing paint is like a heat-seeking missile homing in on 'dry-clean only' fabric.)

It turned out to be not only a wonderful mother-daughter bonding experience, but a golden opportunity to recapture a little of our childhoods. In short, we had fun. After we were able to escort our Inner Saboteurs out the door, we relaxed and let go of the outcome. It didn't matter that we didn't create works of art fit to hang in the National Gallery of Canada. We felt an immediate sense of fulfillment, and a desire to try more new things.

In the same way, art therapy is a healing, creative process for the intellectually disabled. According to the Ontario Art Therapy Association, "art is the tool for communication, self-examination and healing. As well, the creative act, in itself, can be healing." To immerse oneself in the creative process is to open a portal to another world, where it is easier to express one's feelings. It's a safe place, and just as music therapy is used to increase self-esteem, communication skills, and social interaction, art therapy is another tool used by a skilled therapist to encourage the intellectually disabled to explore their inner world.

"Some remarkable art has come from people with autism of all levels. They can communicate fluently what is hard for them to put into words." (See Daniel Muller and Adrian Tarpey, for example.)

Ideal-Way.ca announced their 1st Annual Art Contest last week, for any persons with an intellectual disability living in Ontario. As I read that "judging by the Awards Panel will be chaired by Andrew Hamilton, Canadian landscape painter," I imagined what it would feel like to give the Inner Editor the heave-ho and submit one's work to the scrutiny of others. Exciting, exhilarating, powerful, I thought.

By encouraging the intellectually disabled to explore their creativity through art, and therefore giving them a place to heal and grow, we are giving them an opportunity to dare to dream.

For more information on art therapy, go to: The Canadian Art Therapy Association
Art Therapy in Canada
Re-Visioning Therapeutic Services
Art Therapy & Autism
Autism Teaching Tools
Kerry's Place Autism Services
Art Now for Autism

Music is the Key

2008-09-11T15:30:00.008-04:00

My brother fell in love when he was only ten years old. In fact, it was love at first sight. The moment he set eyes on his Christmas gift that year, there was no looking back. His first guitar opened up a whole new world for him, and he would play for hours, lost in another world. Nothing much has changed. He still locks himself in his room and enters a world where unspeakable joy threads its way through his fingers and into the strings of his guitar. Nothing else can lift him from the doldrums like an hour spent strumming on his handmade acoustic guitar. It was, and still is, a place to go when he needs to fill his tank. But it's more than that: music feeds his soul, nourishes every part of him, and when he dips his hand in the well of creative exploration, his spirit expands and lets in more light.

Of course, he would wave away my poetic ramblings. "It just makes me feel good, that's all, pure and simple," he would say.

For one breathless moment, there are no need for words, no expectations, either from the outer world or himself, and when he's on stage, he experiences a deeper connection with others.

It should come as no surprise, then, that his son, Christian, is a gifted drummer. Already, at eight years old, he has knocked the socks off of older, more experienced drummers. "How did he learn to play like that?" they ask. His father merely shakes his head and says, "I don't know, he just picked up the sticks one day, and away he went!"

Christian has autism, and according to the Autism Canada Foundation, "it has been noted time and again that autistic children evidence unusual sensitivities to music. Some have perfect pitch, while many have been noted to play instruments with exceptional musicality."

Which begs the question: Why is music therapy so effective in unlocking doors that have hitherto been closed within a developmentally, emotionally, or physically challenged person? Well, "music unlocks abilities" within a person. A trained music therapist will carefully assess the person and determine his or her particular needs and strengths. By creating a safe environment, where words are unnecessary, improvisation is encouraged, and creativity is given room to flourish, amazing things unfold. A nonverbal child speaks for the first time, or makes eye contact, for example.

Who benefits from music therapy? For those with acquired brain injury, autism, and other developmental disabilities, music can give them permission to explore their creativity, and an open space to communicate and interact with others.

"Music can heal. It can do more than ease the pain. It can throw a lifeline to kids who can't be reached in any other way." Paul McCartney

To learn more about music therapy, check out the Canadian Association for Music Therapy (CAMT Conference 2009, A Song for Everyone: The Voice of Music Therapy, May 7-9, 2009); Canadian Music Therapy Trust Fund; the Laurier Centre for Music Therapy Research; and OnWellness.info.

The Magic of Dogs

2008-09-06T09:39:00.011-04:00

I woke up this morning with a bad taste in my mouth. The familiar aftertaste of a recurring dream that won't leave me alone. It has dogged me all my life, pardon the pun. I'm back in school, lost in a maze of institutional-grey hallways. I enter a classroom, only to realize that an exam is underway. Of course, I haven't prepared for it, and since I had skipped most of the classes, I don't stand a chance of passing what amounts to a matter of life and death.

I'm aware that this dream is as common as hen's teeth, shared by most of the population of the world, but still...it's my dream, filled as it is with the anxiety of not measuring up, of failing at something critical to one's survival. And I'd really rather not revisit those agonizing moments spent staring out of countless windows and dreaming I'm on the other side of them.

No doubt this dream was pulled from my dream repository because it's the first week of school. As I lay in bed, the covers pulled up to my chin, a memory flooded back, complete with all the sights and sounds I'd managed to store away...deep in the coffers where all bad memories molder. I'm standing in the schoolyard, outside the kindergarten class, holding onto my mother's hand. It's the first day of school, the first day I'd ever been away from my mother's comforting presence. I'm rooted to the spot, my brand spanking new Mary Janes and pastel green Sunday best dress not providing the usual solace.

I stare fixedly at the door, as if waiting for the train to make its way down the tracks at High Noon. An odd cage-like area attached to the classroom reminds me of the neighbour's dog pen. I want my mom to go in with me, but since that's clearly not in the cards, I settle for Blackie, our gangling black Labrador retriever. I imagine him fitting his paw through my arm and escorting me into the classroom, like a gentleman from a bygone era escorting a lady in to dinner.

It would have been nice, as the class sat on the floor in a semicircle, to lean into Blackie, allowing him to take the weight of my anxiety. I knew enough not to ask. Dogs weren't allowed anywhere, least of all in the hallowed halls of a public school.

Later, as I read of the families battling for the rights of their autistic children, I thought of how Blackie could have helped me over the initial hurdle of the dreaded first day, and how service dogs are able to ease children with autism into potentially stressful situations, relieving their fears and providing a safe harbour.

My golden retriever nudges me with his nose as I sit at the keyboard. I should have named him Nana, like the Newfoundland dog in Peter Pan, for he fills all the requirements of a nurse. I can see why golden retrievers are a popular choice for dog services such as Autism Dog Services and National Service Dogs. The dogs undergo rigorous training, and at the end of the day, are more than a companion for children with autism and other special needs. The dogs have a calming effect, and allow the children to connect with people. Some children become more verbal, sleep through the night for the first time in years, and, more importantly, achieve a sense of belonging. The dogs are an endless font of unconditional love, a safe haven in a world that is not always accepting of who you are.

Call it 'magic', if you like, but the fact remains: service dogs help to "build bridges...a pathway to inclusion for persons with intellectual disability", through a mysterious connection with their charges.

They clearly have a powerful impact on the lives of thousands of children. Even as some school boards are banning service dogs from school premises, there are stories of dogs accompanying families on trips to the grocery store, and one dog went along for the ride when a family visited Disney World.

A little magic goes a long way. So for the sake of those children who find it easier to navigate through life with a Nana by their side, let's open all the doors in our communities. Bob Dylan said it best: "The slow one now will later be fast...and the first one now will later be last. For the times they are a-changin'."

I Have a Voice

2008-08-29T14:52:00.008-04:00

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

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

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

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

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

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

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

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

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

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

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

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

The Power of Words

2008-08-22T11:03:00.005-04:00

Yesterday I grabbed our local paper and headed out to the backyard. Splashed across the front page was a report of the discovery of a giant hogweed in our area. I held my breath as I read of the potential harm it can inflict on those who come in contact with it.

Apparently, "severe burns can usually result in blistering and painful dermatitis. Blisters can develop into purplish or blackened scars, sometimes up to 48 hours after exposure. In some cases...eye contact can lead to temporary or possibly permanent blindness." Gulp...

We are cautioned to wear protective gear when gardening. It's an invasive weed, taking no prisoners, and will take over your garden if you're not vigilant. Uproot it at the first sign of its presence.

I dropped the paper and spent the next couple of hours in an extensive reconnaissance tour of our garden. Who knows, this giant hogweed could be lurking in the shadows, supposedly minding its own business. But, a la Day of the Triffids, it could be plotting a hostile takeover of our lovely garden. Visions of mutant hogweeds systematically cutting a swath through our community danced in my head.

Weeds are stealthy, sometimes taking on the look of the surrounding flora. I know better, though. They may masquerade as another member of the flower family, but they are poisonous plants, slowly choking the life out of a thriving garden. Just as a gardener will create diversity in a garden, in order to encourage a flourishing plant community, so she will uproot noxious uninvited guests.

Maybe I just need to understand where the weeds are coming from. After all, it's possible they don't mean any harm. In fact, it's possible my sense of humour needs a drastic retuning - a complete overhaul, perhaps? - and if I can see the funny side of their presence in my garden, we'll all get along much better. The weeds will take pity on its flowering neighbours, and therefore decide to play fair.

No, on second thought, even if they're unaware of the damage they're inflicting on the community, we know better. It's best to uproot them, and in their place plant something that will only have a positive effect on the environment.

Like the damage to a child's self-esteem when he hears the r-word repeatedly used against him. I read in a blog that "research featured in Harvard Mental Health Letter and published in The American Journal of Psychiatry looked at the damage that hostile words, and or yelling, can have on a child. They found "words are weapons that can cause lasting wounds..."

So it behooves us to protect our children from the negative, hostile elements in their lives, and plant them in a positive, loving, and supportive environment.

"Words have great power to heal or hurt." The Special Olympics reminds us "our choice of language frames how we think about others. It is time to respect and value people with intellectual disabilities. It is time to accept and welcome them as our friends and neighbours. Change the conversation...Stop using the r-word."

Instead, plant a different word in the community: Respect.

Don't Fence Me In

2008-08-15T13:39:00.010-04:00

My neighbour just put up a fence. I'm a little sorry to see it, though. Every morning, I would sit at the kitchen table, coffee cup in hand, while deer, wild turkeys, and other wildlife strolled, unimpeded, through the neighbourhood. For the first time in years, the binoculars and camera weren't gathering dust on a closet shelf.

But I need to be realistic: cattle will soon share this land, and I see the value of keeping them safely penned in, while keeping out unwanted visitors, such as our overly inquisitive Golden Retriever. The cattle will have plenty of room to roam, and I won't have to spend many nail-biting hours fretting over the garden we've been carefully cultivating all summer.

Besides, our neighbour went to a lot of trouble to make the fence aesthetically pleasing, not just functional.

But what about the fences we erect to keep people effectively locked out of our communities? There are plenty of subtle, and not so subtle, ways of keeping 'unwanted visitors' out of the mainstream pool. Like perpetuating negative stereotypes of groups of people, for example.

I was reading an entry from Barriers, Bridges and Books, an excellent blog on disability advocacy and cultural change. For the last couple of weeks, the author has been discussing the importance of the disability community coming together as a whole, with one voice, in response to a "movie coming out this August called Tropic Thunder that bandies the R-word all over the place and describes the experience of having an intellectual disability as being "moronic, stupid, dumb and imbecilic.""

We've come a long way, baby, but in 2008, a big-budget comedy is still attempting to keep the intellectually disabled 'in their place'.

But what, exactly, is that place?

As the author pointed out, "An actor does NOT have to accept stupidity, being a total imbecile, etc. from themselves to portray someone with a cognitive disability. This is NOT what it is like to have a disability."

Someone once said, "The walls we build around us to keep out the sadness also keep out the joy." But isn't there a happy medium? Don't we need boundaries, both within ourselves as well as in society?

Boundaries are necessary, but they shouldn't be used to fence people in. Particularly when the people are being treated like cattle and systematically herded into a no-man's land of ridicule, indifference, and social isolation.

Stand Tall

2008-08-09T11:19:00.009-04:00

Neil MacDonald (see Neil's poem, Voices of War, in 'A Place for Poets')

"TIMBERRRR!"

My husband's voice rang out in the forest, and everyone scattered to the four winds. The giant tree creaked and groaned in protest. The tree was dead, but perversely, I wanted to step forward and take the weight of it in my arms. Catch it before it could hit the ground and disappear forever. It was a fine old tree, and I didn't want to say goodbye to it.

I closed my eyes and turned away, tensed for a resounding crash to split the air around us. Instead, silence filled the space where we waited.

A crowd of us gathered around the tree. The top half wasn't lying on the ground. It had opted, instead, to take its place alongside its original home. It was as if someone had snapped the tree in half, and like me, couldn't bear to part them.

Like an old married couple, the two halves of the tree stand almost knitted together. One rooted in its surroundings; the other one a symbol of perseverance and steadfastness.

Against all odds - including storms that have swept away larger and mightier trees - this tree simply would not acknowledge defeat.

Now that the long-awaited Beijing 2008 Olympic Games are underway, I'm reminded of what it takes to stand tall in the face of storms. To know who you are, stand up for your beliefs, and persevere even when the odds are decidedly against you.

As I read about four Special Olympics athletes from East Asia who were selected as Olympic torchbearers, the true story about a Special Olympics athlete's road to gold came to mind.

In "Spirit, Courage & Resolve, A Special Olympics Athlete's Road To Gold", Tom Lambke wrote about his son's journey from his birth in 1981 - the moment he "knew that our beautiful boy had Down syndrome and that our lives were about to change forever" - to the podium at the 2003 International Special Olympics in Dublin, Ireland.

Throughout Bryan's life, friends and family have seen only ability in his disability. Standing together, they look only to the future, accept Bryan for who he is, and "work with him lovingly."

I visit my twin trees, from time to time. Just like Bryan Lambke, his peers, and all the people who stand solidly beside them, they are symbols of standing tall in the face of life's challenges, and persevering even when storms threaten to take them down.

When the greater community stands shoulder-to-shoulder, with one unified voice, a seismic shift in the collective consciousness will occur, changing forever how people view those who've been labeled 'different'.

For information on Down syndrome, consider reading Bryan and Tom Lambke's "I Just Am: A Story of Down Syndrome Awareness and Tolerance."

Dare to Dream

2008-08-01T12:24:00.009-04:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Choose Joy, by Jennifer Lee

2008-07-25T15:33:00.005-04:00

Robert Hajjar with Addie Daabous

This morning I spent two hours in traffic. My morning routine varies every day, depending on whether I want to have a quick breakfast, sleep an extra 10 minutes, or maybe even take an extra-long shower. Regardless of my nighttime pledge to leave the house earlier, I always end up leaving 20 minutes later than I had originally planned. Instead of a one-hour commute to work, the inevitable wall of traffic creates a time-consuming, stressful drive.

The instant I see the line of stationary cars snaking along the highway, I begin my second daily routine: I begin complaining to myself. Throughout the day, I seem to find a great number of things to complain about, whether it is a difficult customer at work, or even a cup of coffee that has gone cold. This will usually last until I fall asleep at night.

Yesterday I was speaking with a friend of mine, when she suddenly exclaimed, "You're always so cheerful and positive!" I was stunned, as I have lived my whole life with a habitual mental list of grievances. She made me realize that I speak and think positively about everyone around me, but reserve mostly negative thoughts in regard to my own life.

It is human nature to take life for granted, and it is easy to fall into a pattern of negative thinking. I have been given wonderful gifts in my life, which I am grateful for, and which should be reflected in my daily thoughts.

This brought to mind my friend, Rob Hajjar, who has Down syndrome, yet constantly exudes happiness and warmth. He doesn't waste time with negativity, but chooses, instead, to revel in life's gifts. It wouldn't occur to him to complain about any aspect of his life.

For the first time, I made an effort to remain in a constant state of joy, eliminating negative thoughts whenever they sprang to mind. The commute became a chance to spend some time with myself, rather than a source of frustration.

I know that my "inner saboteur" will wait patiently for me to show up so it can whisper self-defeating words in my ear. But a few small changes have already made me experience what Rob must feel every day: a sense of contentment and appreciation for life.

Lonely World, by Patrice Slama

2008-07-17T14:06:00.010-04:00

The following entry was written by Patrice Slama, a board member of Ideal-Way.ca.

As a mother of an intellectually challenged child, my heart can't help but feel the loneliness felt by her. When it came to making really good friendships, it just didn't seem to happen for her. It took them, in my opinion, too long to admit she had a learning problem, and then from there she was shoved from one school to the next. Sure there were a few of the friends she met that were shoved around just like herself that she still has contact with today, but nobody she can call up when she's feeling down and lonely. When people catch on that she is different, they tend not to include her in a lot of things. I think people need to be educated on all that these individuals have to offer.

The contact I have had with special needs individuals has blown me away and given me a new heart to want to do all that I can for them. They are the most loving, nonjudgmental group of individuals you could ever hope to meet. I have truly found my passion in life and will continue to do whatever I am able to do to help them feel included and deserving in this world. More activities in our communities need to be set up that include these wonderful people, and complement their lives. Let's help them enjoy life and include them in all that we do.

You will be changed if you are ever lucky enough to spend time with these folks. They are more talented than you think and deserve the recognition for their efforts. Reach out your hand and give someone who doesn't have all that you have a chance to feel love and acceptance. The smile you put on their faces will be worth a million bucks.

What Is Autism?

2008-07-11T08:40:00.006-04:00

Last night I had one of those deer-in-the-headlights moments that happen every now and again. Usually in the dead of night. I dig down deep, like probing a painful tooth with my tongue, and allow the full weight of the bad moment to descend on me. And then the blessed relief when I realize that it could never happen.

I flew out the door, loaded down with books, papers, water bottle, and car keys, congratulating myself on remembering to return books I had borrowed. It was a potluck dinner/writers' meeting, and I was leaving right on time. Minutes from the hostess's house, it hit me.

The bag containing a couscous salad, veggie tray, nacho chips, salsa, and a delectably warm-right-out-of-the-oven baguette - enough food to feed the entire neighbourhood - was slumbering in my mother's fridge. I had spent the day with her, and in my haste to arrive at the party at 6:00 p.m. on the dot, I had inadvertently forgotten to bring along my contribution.

Quelle horreur! It was too late now. I was already five minutes late, thanks to rush hour traffic. As it turned out, the other guests were gracious, and I even managed to laugh along when someone pointed out the distinct lack of food at our soiree.

It wasn't really the end of the world, of course. No one was offended (except for my wounded pride), no one felt marginalized, and I was able to leave the party still feeling like I was important to these people. As if I deserved to be there, a part of their little community.

This morning I read a newspaper account of a mom who took her family, including her autistic daughter, to a Smitty's Restaurant, and was asked to leave because her autistic child was making too much noise.

For a moment I could feel what every person in that family must have experienced. It was a mere flash, like a lightning bolt to the heart, but...well, that familiar 3:00 a.m. anxiety washed through me.

Those moments in life when you are made to feel smaller than everyone around you, that you don't count, and really it would be more convenient if you weren't there at all. Every child has felt it when they're the last one picked for a team, or the proverbial wallflower, standing at the edge of a dance, feeling ignored and unwanted.

Every member of that family was made to feel smaller than the other patrons in the restaurant.

As if they didn't really count.

In the end, Smitty's stepped up to the plate. An apology was given to the Seymour family on behalf of Smitty's Canada. An emergency staff meeting was scheduled for all Edmonton restaurants, and the restaurant has promised to give sensitivity training to staff members.

"Smitty's Canada also said it would like to work with the Autism Canada Foundation to spearhead a fundraiser for the cause," according to the newspaper account.

This whole sorry episode only serves to reinforce the need "to educate, and positively improve mainstream social attitudes."

"She has to live her life, too, it's a balancing act, it really is," her mom said. "You just get tired of the discrimination, you do. I think our world is ready for this. Racism, sexism is no longer acceptable. I think special needs people need to be accepted too."

Yes, indeed. After all, doesn't everyone want to feel Included, Deserving, Equal, Appreciated, and Loved?

To learn more about Sarah Seymour's organization, All Kids Have Special Needs, click here.

Thank you, Sarah, for creating a wonderful video, entitled "What is Autism?"

What Kind of World Do I Want?

2008-07-05T15:56:00.003-04:00

We recently moved to the country. Now, when we throw open our windows every morning, we're greeted by a symphony of birdsong.

Robins, bluejays, rose-breasted grosbeaks, orioles, and some I have yet to name, use our property as their personal playground. We weren't content to catch fleeting glimpses of birds as they soared past our windows and landed somewhere in a tangle of tree limbs, however. We wanted quality time with our friendly new neighbours, who after all seemed to be happy we were sharing their space.

Before you can say it-seemed-like-a-good-idea-at-the-time, bird feeders of different shapes and sizes were dangling from our hastily constructed bird feeder swingset. They swayed gently in the breeze, weighed down with a bounty of sunflower seeds.

I couldn't wait to see who would pop in and sample our wares.

Over the next few days the odd bluejay visited our brand spanking new food bars, but no one else felt the need to swing by the new eatery.

I would love to say we're bird-watching neophytes, but that would be a bald-faced lie. In fact, over the last few years, we've invested a considerable amount of time researching everything there is to know about bird feeders.

In short, we knew better. Any bird watcher worth his salt knows you need to provide a wide array of tempting treats, based on the types of birds that visit your property. If we had slowed down and taken the time to look at the needs and wants of our friends, we would have laid out a smorgasbord of various seeds, such as millet, safflower, and niger, with just a pinch of nectar thrown in.

If you're new to your neighbourhood and want a deeper connection with those around you, try inviting them into your home. Create a warm welcoming atmosphere, and listen to their stories. Find out what makes them tick. Think along the lines of Robert Fulghum's All I Really Need to Know I Learned In Kindergarten. You'd be surprised how easy it is to reach out and create a deeper connection with your neighbour. It just takes a little effort.

Speaking of reaching out to others, click here to view Five For Fighting's video, which stresses that "we are all connected to one another through our actions. Each person has the ability to make a difference."

What Am I Missing?

2008-06-27T11:42:00.006-04:00

Last night the skies opened up and drenched our garden. Afterwards, the sun poked its face through a ribbon of cloud, giving me permission to venture outside. I walked round the front yard, admiring the various shapes and colours of the plants. Droplets of water clung to the leaves and settled in the petals of the flowers.

Weeds had seemingly sprouted everywhere during the downpour. I plucked away tendrils of vines that slithered through the garden and snaked up the bodies of plants in their battle for takeover. I was caught up in my mission to supply much needed breathing space for our flowers and didn't notice that my husband had joined me.

He stood back and surveyed the front yard.

"Did you see the strawberries?" he asked.

Strawberries?...Tufts of gnarled grass lay at his feet. I bent down and took a closer look. Nestled amongst the tangled grass was a treasure trove of tiny rubies glinting in the sun, each one the size of my baby fingernail. I closed my eyes and popped a couple in my mouth. They burst open on my tongue, barely there but more flavourful than the larger strawberries I'm used to seeing in the supermarkets.

When I opened my eyes, my husband was waving his arms in the air.

He pointed in the general direction of the pond and mouthed the words, "Did you see the fish?"

Fish?...I was still basking in the wonder of bright red jewels sliding down my throat.

I didn't see it at first. The surface of the water was teeming with a life of its own, and a large display of purple wildflowers waved in the breeze next to it.

A large bass suddenly appeared out of nowhere, gliding swiftly past me in its silent world just under the surface of the water. I watched him for a few minutes, then he disappeared into the hidden depths of the pond.

I was grateful for the gifts of these gems hidden just beneath the surface of life. But I couldn't help but wonder what I would have missed if I'd been alone. In my quest to vanquish our weed population, I had forgotten to remain present to the beauty of all life that surrounds me.

Sometimes we need to stand back, survey the larger community, and be willing to look beneath the surface. There's an entire world of opportunities and experiences just lying in wait for you.

I'm In Here

2008-06-20T09:46:00.001-04:00

I was staring sightlessly at a blank page this morning, when I was startled out of my reverie by a shrill squeak. For a wild moment, I thought that a bird had somehow infiltrated my office. My sanctuary, the place I retreat to, the room at the other end of the house that's reserved only for me, and where everything falls away.

I value the time spent here, for after filling my cup with the peace and contentment that comes with quiet time, I am a better person for it. I don't need to be pampered with various spa treatments, but I do need to be alone, from time to time. To soak up the silence contained within these four walls so I can take the gift of inner peace and allow it to flow out to others.

The chirping grew more insistent, a call to step away from myself and attend to someone's else's needs. I whirled round and came face-to-face with a bird. Well, not quite face-to-face - a pane of glass separated us from one another.

I stepped closer to my visitor - a rather daring visitor who didn't seem to appreciate my need for alone time - and looked him over from head to toe. He craned his neck, peering in at the darkened room, but his view was clouded.

This was obviously a planned trip, for he had taken great care to dress for the occasion. Brilliant red tie, crisp white shirt, and black jacket. (I later learned that he was a Rose-breasted Grosbeak.) After craning his neck a few times, he suddenly reared up, wings spread wide, and flung himself against a wall of glass. He stumbled back, but somehow remained on the windowsill. Smoothing down his lapel, my gentleman caller took a last lingering look, shrugged his shoulders, and flew off.

It's always a frustrating experience for anyone. We all share the need to connect with others, be part of a community, to belong. But we've all been in that dark place. Standing on the sidelines, peering in at a party in full swing, and just wanting to connect with those around us. Yet somehow we're left with the feeling that we're standing on the outside looking in.

As I watched a video the other day that calls us to listen with our hearts to those who often feel like they're beating their wings against a solid wall, I wondered how I could start being a better listener. Well, I could begin by stepping outside of my comfort zone, opening my doors wide to those who just want us to "see the world through their eyes for just a moment in time."

For a look at an anthem for autism, check out

Am I My Brother's Keeper?

2008-06-10T15:35:00.000-04:00

Now that I spend so much of my time at the computer, I'm in danger of missing the gifts that arrive on my doorstep almost every day. Yesterday, I was rewarded for stepping away from the busyness of my life.

Nursing a cup of coffee and staring dreamily out the kitchen window - my computer snoring softly in the next room - I became aware of clucking in the distance.

A group of wild turkeys were strolling through my neighbour's backyard. I watched in fascination as the females kept their heads down and concentrated on finding tidbits in the grass. The males formed a phalanx of protective armour behind them, keeping an eye out for marauding predators, while at the same time ensuring that the females didn't lose their way.

I quickly laid my coffee cup down and took up the binoculars. The head tom fanned his tail, from time to time, a casual flexing of his muscles that kept the younger jakes in line. Never once did the males let down their guard, and never once did the females feel the need to cast a furtive glance towards the forest.

They continued on their leisurely walk, the females pecking at the ground, and the males on high alert. It all looked....well, so effortless. I could almost imagine the females mincing across the yard, parasols held aloft, their long, flowing dresses brushing against the tall grass...the males with walking sticks, jingling coins in their pockets, and gallantly throwing down their cloaks over puddles.

I wondered what it would be like to have such a presence in my life. To move through my day, a squandron of angels in my corner. To be honest, as a modern woman, I'm not entirely comfortable with that image.

But I am comfortable with the urge to protect: doesn't every mother feel it, even when her children have outgrown the need for her protective arms around them?

This leads me to another question: is it an imperative to extend this primal urge to the larger community?

As the birds disappeared round the corner of our house, I felt a new resolution stirring within me. Are you your brother's keeper? whispered in my ear. I had a choice. I could put down my binoculars, and join hands with others. Or, instead, in this day of voyeurism taken to new heights, I could choose to read about others through news blogs, sighing over those who are largely ignored in our society. Wishing I could do more, but reassured by the knowledge that I'm only one woman.

Don't get me wrong. I have done my fair share of merely observing the plight of others. But maybe it's time to flex my own muscles, remind myself that I am not an island. I may be only one woman, but there are others who are willing to join hands with me, creating a safety net for those in need of one.

And in so doing, by willing to step away from the distractions in my world, I can open my heart to the gifts that are right there in front of me. For, as L'Arche reminds us in their video, What Makes a Community?, when we are supportive of one another, we all benefit from the gifts present in each one of us.

A Simple Act of Love

2008-06-01T10:08:00.000-04:00

Last night I sat on my deck and watched the sky play a game of cat and mouse with me. I wanted to be in a comfortable state of mind, so I had taken some pillows from our living room and heaped them in a corner of our deck.

My sketchpad lay open, and I stared down at the stark white page. I am not an artist, but my fingers itched to translate the beauty of the sky into a visual feast on paper.

Scrolls of cerulean blue, magenta, and deep ochre painted the canvas above me. Maybe the colours would leap to life under my paintbrush if I concentrated long and hard enough. I bent over my sketchpad, engrossed in getting the colours just right.

How much easier it would be if I didn't need a paintbrush...I imagined the colours magically falling from the sky and coming to rest on my page. Suddenly, the paintbrush came alive in my hand, and I didn't look up until I felt the classic 'aha' moment. That moment when a little voice in the creative hub room whispers, You got it, baby...

But while I had been struggling to capture the moment, the sky had shape shifted into something else entirely.

By the time I had painstakingly created something that could safely be tacked to the storage-shed wall, the sun had dipped behind a bank of trees.

The sun was gone, but it was a warm night. It held the kind of darkness that is strangely comforting. I was reluctant to leave my nest of pillows, so I waited for the darker, nighttime orb to take its place in the sky.

A faint breeze moved across the backyard, gently riffling its fingers through the trees, and through my hair. The moon was smudged over by layers of gauzy cloud, and I basked in the stillness of the night. Inside the circle of the moon was a network of lacy webs, like the Spirograph patterns I loved to create as a child.

The artistry took my breath away. Maybe the play of light was creating something out of nothing, but whatever the case, I was enjoying the show.

It struck me that the moon didn't choose to reveal breathtaking beauty. It didn't labour in front of the mirror, for hours at a time, intent on showing itself to maximum effect.

It simply showed up. Like a simple act of love. It arrives without any fanfare, and asks nothing of us.

My thoughts strayed to my friend, and fellow board member of Ideal-Way, Robert Hajjar. Before the birth of Ideal-Way, Robert sat down with his Aunt Ad and Uncle Don. He took a plain wooden box from under his bed, and emptied it. Nickels, dimes, and quarters spilled helter-skelter across the smooth expanse of his bedspread. Together, they counted the coins out loud.

Robert sat back and held his breath. His entire life savings, held out in the palm of his hand, for the sake of others.

He figured it would be in the thousands. But the amount didn't matter. He just knew, in his gut, that what he was doing was right. God had told him that his Aunt Ad was the perfect person to start up a company for people just like him. And he would be the first donor.

As the last coin was deposited in the box, Ad held up her hand.

"Attention, everyone! The final amount is...drum roll, please...Sixty-two dollars and five cents!"

That was the beginning. The first donation to Ideal-Way. I wasn't there. I didn't see the tears in Ad's eyes, or Don turn away and cough sharply. I can only imagine Rob's gentle smile as he handed over the wooden box to his Aunt Ad.

"Do what God told me to tell you. Start something for people like me. Make their lives better...because they can't do it for themselves," Rob said.

As I sat on my deck, watching the sky transform from one glorious vision to another, it prompted me to think that I don't need to work so hard to get things 'just right.'

Maybe it's time to leave the sketchpad at home, and just show up. Follow the lead of a Down syndrome man who didn't struggle for one second with his decision to give everything away.

Rob is a reminder to shine your light into every corner of your world. And don't be afraid to offer whatever gifts you have. The beauty contained in a simple act of love will transform every life around you.