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/.

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