This Blog Has Moved

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/.

Hope to see you there.

Photo: Robert Pio Hajjar

Who Changed Your Life?

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

"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

"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"

"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

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

"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

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

"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

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"

(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

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

(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"

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

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:

1. Helpful blog posts from Beginning Reading Help.
2. Tips for teaching personal hygiene in young children with intellectual disability. in young children with intellectual disability.
3. 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.”)
4. Resources, support and help for the child with developmental disabilities. (About.com: Special Education).
5. Procedures for Reducing Dental Fear in Children with Autism.
6. Tips for Successful Haircutting, Autism Speaks:
7. 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.
8. Musical potty training for kids with autism.
9. The President's Choice Children's Charity: Offers financial assistance to purchase equipment or services to families who have children born with disabilities.
10. 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

"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

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

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

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?

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.