Showing posts with label detour. Show all posts
Showing posts with label detour. Show all posts

Sunday, April 13, 2008

Kidney recipient ready to walk tip to tip again

http://www.journalpioneer.com/index.cfm?sid=125310&sc=118
Kidney recipient ready to walk tip to tip again

Kidney recipient Brian Ellis and his wife, Deborah,
are preparing for his third walk across the province in
support of organ donations. Jim Brown/Journal Pioneer
JIM BROWN
The Journal Pioneer

SUMMERSIDESummerside kidney recipient Brian Ellis is preparing to hit the road again.

Ellis, 47, was a former dialysis patient whose life was transformed through the gift of a kidney.

He plans to show his appreciation to those who helped him along the way and to raise awareness about the need for signing the organ donor section of drivers’ licences.

“We also want people who sign the forms to talk to family members, make sure they know their intentions,” he said.

Ellis plans to walk a route he knows well, from East Point to North Cape, a distance he estimates at approximately 308 kilometres.

His campaign will begin April 18 at 8 a.m. His ETA for North Cape is April 27.

“We hope to get transplant recipients and donors involved. Anyone who wants to walk is welcome to join me,” said the Arnett Avenue man, whose wife, Deborah Snow, will accompany him by car.

This will be Ellis’s third effort, with the first walk when he was still on dialysis and in frail health.

Ellis received his gift of life at Halifax’s QEII Health Sciences Centre on Aug. 13, 2006.

“I can walk, I can swim, I can do anything a normal person with two kidneys can do. I’m one of the lucky ones. It was a big gift, the best gift I ever received,” said Ellis.

Last year’s walk raised approximately $6,000 for kidney awareness and patient services.

Ellis is timing his walk to promote National Organ and Tissue Donation Week, running the last full week in April.
~*~

Last year, Alex & I joined Brian for a few Kms west of Hunter River and I hope we can do the same this year.

Brian kept a blog last year, Walk 4 Life, and will be blogging this year's walk as well.

If you see Brian out there on the road, between April 18th & 27th,
please give him your moral or monetary support.
A honk & a wave can go a long way and every dollar counts.


From Brian:

HELLO MY FELLOW FOLLOWERS;

IT’S THAT TIME OF YEAR … I’LL BE ON THE ROAD AGAIN … STARTING BRIGHT ‘N’ EARLY APRIL 18TH AT EAST POINT. THANKS TO OUR SPONSORS … LOOKS LIKE IT’S GONNA BE ANOTHER EXCITING WEEK… AND IT’S ALL FOR ORGAN AND TISSUE DONOR AWARENESS.

LISTON TO K-ROCK AND OCEAN FOR UP TO DATE DETAILS ON WHERE I’LL BE ALONG MY JOURNEY.

102.1 SPUD FM WILL ALSO BE TUNED IN.

I WILL ALSO KEEP MY BLOG UP TO DATE FOR THOSE OF YOU WHO LIKE TO HEAR ABOUT MY PROGRESS FIRST HAND.

I AM EXCITED, ONCE AGAIN, TO RAISE AWARENESS ABOUT THE IMPORTANCE OF ORGAN AND TISSUE DONATION. YES … I HAVE EXPERIENCED THE DEVISTATING WAIT FOR MY PRECIOUS GIFT. ON THE OTHER HAND … BECAUSE OF MY DONOR AND MY DONOR FAMILY … I HAVE ALSO BEEN FORTUNATE ENOUGH TO EXPERIENCE THE PURE ELATION OF JOY AND GRATITUDE WHEN SOMEONE COMES THROUGH AND HONORS THEIR LOVED ONES WISHES TO GIVE THE GIFT OF LIFE TO A STRANGER. I HAVE BEEN BLESSED AND THERE ARE SO MANY PEOPLE OUT THERE THAT ARE WAITING LIKE I DID … EVEN LONGER THEN I DID. PLEASE TELL YOUR FAMILY OF YOUR WISHES TO GIVE THE GIFT OF LIFE.

… PLEASE WALK WITH ME … IF NOT PHYSICALLY … BE WITH ME IN MIND AND SPIRIT. PLEASE SHOW YOUR SUPPORT.

THANK-YOU MY FREINDS

Donations to be received at Scotiabank locations across PEI

Monday, February 18, 2008

Detour: The AAP Mythbusters want You!


~*~
"I have no doubt. There's no way they'll convince me that all these kids were not damaged by vaccines."

It is difficult to challenge a mother's knowledge of her own child. And also to fight off the staying power of the vaccines-cause-autism theory and other such notions that verge on the irrational.
From: True Believers - Why there's no dispelling the myth that vaccines cause autism. By Arthur Allen

The American Academy of Pediatrics, in an effort to promote science in autism and stamp out the pseudo-science and quackery being presented to the public by the likes of (real) people like Jenny McCarthy and (fictional) people like Eli Stone, is requesting the assistance of parents. Jenny McCarthy and William's mother need not apply.

"When new parents start to think about vaccines, they are likely to hear primarily the voices of those who fear vaccines. They are less likely to hear the voices of parents who have lost children as a result of such diseases as polio, meningitis, and hepatitis, or who have watched their children suffer with illness and lifelong complications such as paralysis, deafness or liver cancer." say Dr. Benjamin Kruskal and Dr. Carole Allen, director of infection control and director of pediatrics at Harvard Vanguard Medical Associates.

The AAP is attempting to address this. Please read the letter below and if you are one of the parents the AAP is looking for, and are willing to participate, please either contact Susan Stevens Martin directly at ssmartin@aap.org or leave your name and email address in the comment section of this post.

Hello,

As part of our ongoing response to media stories regarding autism and vaccines, the AAP communications department is compiling a list of parents who support the AAP and are available for interviews. We are looking for two types of parents who could serve as spokespersons:

Parents of children with autism spectrum disorders who support immunization and who do not believe there is any link between their child's vaccines and his or her autism.

Parents of children who suffered a vaccine-preventable illness. This could be a parent who declined immunization, whose child became ill before a vaccine was available, or whose child was ineligible for immunization.

We are asking for your help identifying parents who would be good spokespersons. They do not need to be expert public speakers. They just need to be open with their story and interested in speaking out on the issue. We will contact candidates in advance to conduct pre-interviews, to offer guidance on talking to reporters and to obtain a signed waiver giving us permission to release their name.

If a parent were placed on our list, we would offer their name and contact information to select media. We hope to build a list of parents from a wide range of geographical areas.

As the Jenny McCarthy and "Eli Stone" stories illustrate, this issue is likely to recur in the national and local media. The AAP is committed to doing all we can to counter such erroneous reports with factual information supported by scientific evidence and AAP recommendations.

The anti-vaccine groups often have emotional family stories on their side. The ability to offer a reporter an interview with a similarly compelling parent who is sympathetic to the AAP's goals is a powerful tool for our media relations program.

Please contact me if you have any questions or to suggest a parent to interview.

Thank you,

Susan Stevens Martin
Director, Division of Media Relations
American Academy of Pediatrics


Autistics deserve the highest standards of science and ethics. We don't deserve what Jenny, Eli and other mythmakers are offering.

This is also being blogged on:

the Marla Baltes blog
on One Dads Opinion
on Telstra
on Grey Matter/White Matter by Sullivan and
on Grey Matter/White Matter by Ms. Clark
on Mom Not Otherwise Specified
on Whiterer on Autism
on Club166
on Autism News Beat
on Respectful Insolence
on AutismVox
on Maternal Instincts…flying by the seat of my pants
on LeftBrain/RightBrain



"No Quack Zone" image by The Autism Diva

Saturday, January 12, 2008

Katie McCarron...

For 2 weeks, in July of 2006, I picked flowers every day for a little girl I never met, who at 3, died far too young, simply because she was autistic. It was the 2 weeks of Alex's "Autistic Celebration Run" and every day, as I accompanied Alex across Prince Edward Island on my bike, I picked flowers along the way for Katie and put them in a loop in my detachable handlebar bag.

Again these days my thoughts are with Katie. They are with her father and
grandparents who so adored her, with her sister....

Katie's mother, Karen McCarron, is currently on trial for Katie's murder.

Karen McCarron is charged with 4 counts, two of which are 1st degree murder.
She is also charged with obstructing justice, and concealing a homicide.

"I hated the autism so, so much," McCarron said.
... I just wanted autism out of my life."

Back in June 2006, Katie's grandfather, Mike McCarron, offered us the following insight into Katie's short life on Autism Vox's blog :
"I would like to say something about Katie. Some newspapers have reported that this was done to end Katie’s pain; let me assure you that “Katie was not in pain”. She was a beautiful, precious and happy little girl. Each day she was showered with love and returned that love with hugs, kisses and laughter. Katie loved music; she would fill in some of the words in children’s songs as my wife would sing along with the CD that would be playing, their own version of “karaoke” . She liked to dance, she loved to do the “hooky poky”. She loved being in among flowers and tall grass. She would say “I like grass”. She enjoyed the zoo and because of all of the drills and flashcards she could identify the animals. Which I thought was pretty amazing for such a young child. She was also the only little child in her non-autistic play group that could identify an octagon. My wife and son had a party for her the day they heard that from the teacher.

She enjoyed having her grandmother dress her in new little outfits and dresses, and I think this is important. We have four grand-daughters, my wife loves to buy them frilly little dresses. When my wife went into a store she would never ask for three normal dresses and one autistic dress. I think we need to be very sensitive to the special needs of these children but at the same time not be oblivious to the numerous typical traits that are also developing. Katie was first and foremost a little girl, she enjoyed people making a big fuss over how pretty she looked. My wife would take her to the beauty shop to have her hair trimmed. Katie enjoyed going to the mall and looking in all of the stores and windows. These are female things.

She went to special schools everyday, the staff at those schools cherished her. I can not say enough for the staff at Mariposa. They were so very much more than professional therapists, they adopted her and loved her deeply. Katie was so lucky to be with them everyday.

There is also another young lady in North Carolina who worked with Katie during non-school hours. The bond that she had with Katie was unbelievably deep. I am amazed that a single Mom working to raise a son by herself could find so much extra love. Maybe love is one of those special resources, the more you give the more is given back.

Katie loved the park, the swings, the slides and being outside. She played with her dolls and toys; she loved “teletubbies” and brought joy to all of those that had actual contact with her. Yes, she was autistic. Developmentally she was behind other children. But her small victories would create unbelievable joy for those who loved her. I can not describe the ecstasy of having her little arms around my neck or of watching her and my son roll around on the floor playing in shear happiness.

Each day I ask the Lord if I could take her place, and perhaps He could return Katie to the loving arms of my son and my wife. So far that prayer has not been granted. But in the meantime I can assure you that no one will describe her murder as “understandable” or devalue her in anyway without my personal challenge to them and the organizations they represent.

I must apologize for the length of this post, please know that I keep each of you in my prayers."


Katie's Memorial Grove

Trees For Life, Restoring the Caledonian Forest

Monday, November 12, 2007

Detour: Heather Doiron, Past & Present


I am often amazed at Alex's great luck. In school, he had some great teachers, willing to work with him (and me!) and some really great Teacher Assistants working 1:1 with him in most of his classes for most of his school life.

In the summer months, he attended swimming lessons, actually "Red Cross Swimming Camp", which involved 2 weeks of half day swimming lessons (at the beach, not in a pool) as well as other fitness and nature activities. Again, he had 1:1 staff, provided by the Red Cross, and their reports made it obvious that they enjoyed the challenge and the kid. The staff all knew his name and they were always happy to see him return every year.

As well, every summer during his elementary school years he was involved with The Education Coalition. For a couple of years, Ben was involved in this program as well. The program was dissolved in 2006 (due to a lack of funding I believe) and taken over by The PEI Council of the Disabled (who recognized the obvious need & success of the program), renamed The Summer Tutoring Program.

"The Summer Tutoring Program is a Province-wide service first offered by the Council in 2006. The program is for children with disabilities who would otherwise lose school and literacy skills over the Summer months. The program had been offered for 19 years by an organization called the "Education Coalition" [which has now been dissolved]. The program is structured to meet the individual needs of each student.

A number of Instructional Assistants are hired across the province and each are assigned a number of children to work with. In the weeks before the end of school each child's teacher or resource specialist supplies the Instructional Assistant with an individualized program to implement over the Summer months.

The program is generally delivered in each child'
s home. However, in circumstances where the home cannot be used, an alternative setting in the child's community is found. The goal of the program is to help children and youth maintain their skills and prevent regression of those skills when they are not in school during the Summer months."

Most of the tutors come out of the Education program at UPEI, students on their way to being teachers. Again, Alex had the most wonderful luck with the tutors he was assigned every year. The program was devised by me, with help from his SLP, Teachers Aide and teacher. Each tutor he had brought their interests into his program as well. The emphasis was primarily on communication. For most of his elementary years, text (typing) was his primary method of communicating but speech, which had only just started midway through grade 1, was encouraged and formally worked on as well. Because of my own (extreme) discomfort level with having people in my house, most of his assigned hours happened out in the community. Here's how I have described this in the past -
"The idea was to take him out to cool places and to do cool things and give him all the more reason to type about where he'd been and what he'd done. So... since by then I had 4 kids and didn't have the luxury of giving Alex my undivided attention and taking him cool places (many of which would be my idea of hell mind you...) I could have this young energetic person keen to take him places, all I had to do was pay gas and expenses. As well, I knew Alex would make a difference in these kid's lives. I probably told them, like I used to tell every teacher "you're really lucky to have Alex in your class...... you don't understand what I'm telling you right now, and may even think I'm nuts, but by the time your time with him is done, you'll understand"
--and they did."

Along with all the various skills he learned & practiced doing all these different things, they would return home where he would write up a report, diary form, of what he had done, where he had gone, the weather, the best and worst parts etc. Looking back of the reports filed by these tutors, they were all very good, some of them were truly exceptional.

Most we've never seen since, some we have - one turned out to be the daughter of Gary & Carol Craswell (race directors of the Wally Rodd), and then there's Heather Doiron. Although we've only seen Heather a handful of times since she worked with Alex (I think she was his very first tutor), we've followed her career and one can't help but run into one of her many siblings around here. Alex & Heather loved working with each other, Alex still has a great love of music as well as some demonstrated talent, and I can't help but think that Alex helped Heather in her chosen teaching field.



Finding the right note
A teacher from P.E.I. has been using music to make it easier
for her students in Japan to learn history

12/11/07
SALLY COLE
The Guardian


When Heather Doiron started teaching in Japan 11 years ago, she faced some challenges.

"How do you get first- and second-year university students with limited English to study American history? How do you get them to come to class?

"And how do you connect with them emotionally?" asks Doiron, who conducts her classes in English at Aichi Shukutoku University in Nagoya.

After examining these issues, Doiron, who is a classically trained vocalist from P.E.I., came up with the idea of adding a musical element to her classes.

"Many chapters of American history have been turned into songs. For instance, when we came to the section on slavery we listened to Amazing Grace and learned the story behind it," says Doiron.

The popular hymn is about its author, John Newton, a slave trader who converted to Christianity after surviving a terrible storm.

After listening to the story, the students' attention was piqued.

"They loved the class. So we started exploring the passion and the feelings behind songs to get them to study history," she says.

The next song was The Night They Drove Ole Dixie Down by Robbie Robertson.

"It's about the horrors of the American Civil War.

"The lyrics tell of Virgil Cain watching as the Union Army General George Stoneman destroys the railroad where he makes a living, and then witnessing the fall of Richmond, Virginia.

"Virgil relates and mourns the loss of his brother in the lyrics, 'He was just 18, proud and brave/But a Yankee laid him in his grave," says Doiron who puts countless hours into preparation for her classes.

Her passion for teaching is appreciated by her students.

"Heather's classes have encouraged me to become interested in many topics. Now I know that I can learn history from music, movies, novels and not just from a textbook," says first-year student Mika Masui in an online interview.

It's a passion that has followed Doiron throughout her life.

Doiron, who has studied classical music and jazz since she was 14, always wanted to be a teacher.

In 1996, after graduating from UPEI with a bachelor of education, the North Rustico native moved to Japan to teach high school and university.

She also took her love for music with her, playing in clubs and recording CDs.

Her creativity in music has helped her teaching career.

"As a teacher, whether you're helping someone cross the road or plant a garden there's part of you in there. You're creating something.

"So being able to draw on your experiences is important," says Doiron who returned home to P.E.I. this past summer.

"As a teacher, I try new approaches and hope that they're going to work with my students. I like to plant the seed, do the watering and see what will happen," she says.

At a glance

* Who: Heather Doiron.

* Influences: Nina Simone, Sheila Jordan, Diana Krall, John Coltrane, Bach.

* Teachers: Pamela Campbell, Sheila Jordan and Jay Clayton.

* CDs: After Midnight, Heather Doiron & Co.

* Getting in touch: www.heatherdoironjazz.com , www.musicpei.com

Tuesday, October 2, 2007

We interrupt this Blog to bring you an important message......


We interrupt this Blog
to bring you an important message......


There has been some truly horrid autism coverage in the media over the last couple of weeks. I have posted a few links about it over at just jypsy September 24th & 25th (you may have noticed the "just jypsy" link on the sidebar the past few weeks) but I'd like to share this video, from The Joy of Autism/The Autism Acceptance Project with you, as the message in it is a powerful & important one.



We now resume regular programming......

Wednesday, August 15, 2007

I LOVE the midway! - Old Home Week on PEI

It Old Home Week on PEI.

Tuesday I went to the midway.


I went ride on the Freak Out, Cliff Hangers,




























Chaos, Zipper, Scrambler,































Ferris Wheel, Bumper Cars, Super Slide,














Mardi Gras and Tilt A Whirl.

















Mom went on Freak Out twice and the ferris wheel. She wouldn't have a heart attack on her ride.


The best ride was Freak Out because swinging at 90 degrees angle and almost 180 degrees.

Inside we saw animals and ate pizza for supper.


We played bingo.




















At 6:00 we went to Stonepark School to run intervals on the track with the Run UPEI class.











My next race is Friday before the Gold Cup Parade (then Sat. I run the 25K Kensington Harvest Fest run)

Friday, August 17, 2007
4th Annual Gold Cup Trot 5K
Distance: 5 K
Starting Time: 9:40 a.m. Sharp! Just prior to the parade
Registration: 8:00 a.m. Victoria Park by ball diamond, or pre-register at Proude's Shoes
Sponsor: Proude's Shoes and New Balance
Course Description: Flat and fast through downtown Charlottetown, portion of race on the Gold Cup Parade route

Gold Cup Parade on Friday
Thousands expected to line the route.
15/08/07
DAVE STEWART

The Guardian


Thousands of people will pour into Charlottetown Friday morning to view more than 50 floats and 100 entries in the 46th annual Gold Cup Parade.
The parade begins at 10 a.m. from Queen Charlotte intermediate school and winds its way through the downtown core to Founders' Hall on Water Street.
In honour of their 75th anniversary of police service on P.E.I., the RCMP have been selected as this year's parade marshal.
The RCMP pipe band and Musical Ride will lead off the event, followed by the usual assortment of floats, antique cars, horses, clowns, giant inflatables and Gold Cup ambassadors.
Bill Chandler, chair of the parade committee, said Friday's parade will take about 90 minutes to view the parade from any one vantage point.
"It looks like it will be a great parade, if the weather co-operates, but we're a go showers or no showers,' Chandler said.
The theme is Games People Play.
"You'll see all sorts of games, from video games to board games, card games, game shows on TV, sports games . . . all represented in the parade on different floats.'
The parade committee is again organizing its annual coin collection so volunteers will be accepting donations at their usual spots around Charlottetown and along the parade route itself.
"Take a toonie to the Gold Cup Parade, we'll be taking donations big and small,' Chandler said.
The parade day collection accounts for 25 per cent of the cost of operating the event. Various government agencies make up another 25 per cent and corporate donations take care of the rest. It costs about $55,000 to run the parade.
"We try to keep traffic moving smoothly, so be prepared. Have your donation ready, it will speed things up. It's a major source of funding so we hope everybody will come out and take a donation with them so we can keep going with the parade.'
As for the parade itself, the Community Clash is back, bigger and more colourful than ever and three pipe bands - RCMP, Belfast Pipe Band and College of Piping (fresh off a fourth-place finish in the 2007 World Piping and Drumming Championships in Glasgow, Scotland).
The concert band from Truro is coming over again and Nova Scotia is also sending over three majorette groups.
For those unable to make it out, EastLink Television will broadcast the parade live from 10:30 a.m. to 12 p.m. to viewers in P.E.I., Nova Scotia and New Brunswick.
Chandler said the best viewing areas are on University Avenue, Grafton Street and Queen Street, areas where those handling the giant inflatable balloons don't have as many power lines to worry about.
There are four inflatable balloons in Friday's parade. Each of them requires 15 tanks of helium to inflate and up to 20 people on each of them to control.
Motorists are being asked to avoid a portion of North River Road on Friday. The section of North River Road, between Belvedere Avenue and McGill Avenue will be closed to traffic as of 7 a.m. on Friday to make room for all of the parade entries.

Parade Facts
  • Begins at 10 a.m. from Queen Charlotte intermediate school on North River Road.
  • Takes about 90 minutes to view it from start to finish.
  • More than 50 floats and more than 100 entries will be featured.
  • This year's theme is Games People Play.
  • Parade marshal is the RCMP, celebrating 75 years of police service on P.E.I.
  • It takes about $55,000 to run the parade. Coin collectors will be out at entry points to the city and along the parade route to accept donations. Donations account for 25 per cent of the overall cost.
  • The parade route takes entries along North River Road (from the school), Brighton Road, Euston Street, University Avenue, Grafton Street, Queen Street and Water Street (ending at Founders' Hall).
  • EastLink Television will broadcast the parade live from 10:30 a.m. to 12 p.m. to viewers in the Maritimes who get EastLink.
*******

Each August the Charlottetown Driving Park Entertainment Centre is the home of one of the major entertainment attractions in Canada - Old Home Week and the Gold Cup & Saucer.
The fastest horses and the best drivers in all of Eastern Canada converge at the CDPEC
for 15 racing programs in 9 days.
The Gold Cup & Saucer dates back to the early 1960’s.
It has become known as one of the most prestigious races in horse racing.

The horse racetrack from the ferris wheel

Gold Cup Trot & Parade Route Maps

Wednesday, April 25, 2007

Walk4Life - another Tip-to-Tip story

Today Alex and I just had the great pleasure of meeting, and taking a few steps with, Brian Ellis. Brian is on Day 5 of his 2nd annual tip-to-tip Walk4Life. He left East Point on Saturday, April 21st and is planning on seeing the North Cape lighthouse Sunday, April 29th. Here is Brian, telling his story:

Welcome to My 2nd Annual Walk!
Monday April 16th 2007,

Hi;

My name is Brian Ellis. I have a long history of serious kidney disease. In 1998, shortly after moving to Prince Edward Island, my family doctor finally decided to end the mystery of my elevated blood pressure. My blood pressure had been uncontrollable since I was 18 years old.

Upon receiving a battery of tests at the PCH, including an ultrasound on my kidneys, it was determined that I had chronic kidney failure. To confirm his findings, my doctor sent me to Halifax. After seeing a number of doctors there, and going through more testing, they sadly told me that I was down to 25% function in both kidneys and my future held the certainty of dialysis.

The next few years of my life changed dramatically as my doctors and I worked together to prolong the inevitable through diet, fluid restrictions and medication. In 2005, I was told I could no longer work and that dialysis was needed to sustain my life. I was 45 years old.

After 5 months in Halifax, receiving dialysis treatment and preparing the life line in my left arm, I returned to Prince Edward Island. Here I underwent dialysis three days a week, 4 hours a day. BUT! There was a light at the end of the tunnel. Fortunately, I was a good candidate for a transplant because of my age and I had no other health complications. My sister was tested to see if she could be a donor but, to her dismay she was not able to be my donor. On the cadaver list I went.

To my surprise and overwhelming delight, I received the call on August 14th, 2006. I was to get to Halifax as soon as possible for they had a new kidney for me.

So, we scurried off. I received my transplant and it was a great success. I thank God, my doctors, the nurses, social workers, but most of all I thank my donor family. Without the gift I received from this family and their loved one, I don't know how much longer I would or could have waited to receive my special gift of life. I want to Thank-you from my heart and soul.

Please! Give The Gift Of Life!

My father, Alex's grandfather, was a dialysis patient. Initial tests showed I was a good match to donate a kidney to him and some preparations were made, but his health complications prevented that transplant from ever happening. May 1st, two days after Brian reaches North Cape, will be the 11th anniversary of my father's death. As well, in 2006 my mom had to have a kidney removed. She is in good health with her one remaining kidney. With that kind of family history and having done the tip to tip trip ourselves, Brian was one guy we just had to meet.

When my dad went through his years of dialysis, he lived in New Brunswick (where my mom still lives). I remember how, even after dialysis started, he was still able to come to PEI in the summer and visit his young grandchildren because a dialysis unit was set up at Marco Polo Land Campground to accommodate summer visitors on dialysis. So I was shocked to learn from Brian today about the realities of Islanders on dialysis. The shortage of dialysis chairs, the waiting list just to have dialysis on PEI, then having to travel to either Charlottetown or Summerside for it (especially if you live in East Point or North Cape) blew me away. As John Gallant explains in a Journal Pioneer article today:
"“It was like a part-time job that I had to go to and I hated it,” he explained.
Three times a week he headed out for about five hours of hemodialysis. Four hours on the machine and another half-hour each to get hooked and unhooked. Then the rest of the day feeling exhausted."
Add travel time to that (especially if you live in East Point or North Cape) and be very, very, glad that that is not *your* life.

The other story here is the fact that with so many Islanders in need of kidneys (and other organs & tissues), if you've signed a donor card, you'de better plan to die somewhere other than PEI because we have no team here to remove your organs & tissues for donation.

"In this three-part (CBC) series, Nancy Russell explores what makes it so difficult to donate organs on P.E.I., and some of the repercussions."

April 22-29 is National Organ and Tissue Donor Awareness Week in Canada and Brian is out there raising that awareness in his own step by step, person by person, way. He certainly made me aware of a few things. Thank you Brian. Thanks also to PEI's media that are doing a great job of covering Brian's Walk4Life and keeping us posted on his daily schedule and to his sponsors for helping him make this all possible. Alex & I both know from experience how important & appreciated this kind of support is. We also know first hand the generosity of Islanders and trust they will be at least as supportive of Brian's Walk as they were of Alex's Run.

We met Brian today on the windy hills of Hunter River. Where we took the "byway" (the Trail), Brian is taking the "highway" (literally). We travelled only a few steps of his long walk with him but it was an absolute pleasure to meet him, to talk with & learn from him, to see the big smile on his well tanned face and shake his hand. It was a joy to celebrate life with you Brian, we wish you all the best, in your Walk and in your life.

Tomorrow Brian will pass through Kensington, the heart of PEI, walk on into Summerside, and end his day in Miscouche. If you're in Summerside, go meet him on the boardwalk and show your support. Visit Brian's Walk4Life page and make a donation and "Please! Give The Gift Of Life!"

Unfortunately my camera was set to video when this picture was snapped.
Brian's team got one on their camera so watch his site
and maybe we'll show up over there.

Monday, April 23, 2007

Detour - Summits of Canada Expidition, PEI's High Point, Alex's Roots


Summits of Canada Expedition, aims, among other things, "To put the first Canadians on top of the "high-point" of every province and territory in the country."

On Prince Edward Island, they will "summit" Glen Valley, the little village in the middle of PEI, that we lived in when Alex (and his older brother) were born.

Although I went into Charlottetown to the Queen Elizabeth Hospital to give birth to Alex , we were back home, in our little hand built cabin in Glen Valley within 24 hours of his birth. (Photo to the left is Alex, one day old, home in the cabin)

This map shows you exactly where the team will summit Glen Valley. Our little cabin was on the outside of the 90 degree bend in the road, just above the green arrow.

The directions given on the Summits of Canada website for the summit of PEI in Glen Valley are:

"Take Highway 2 to Fredericton to Glen Valley. Turn left onto a dirt road and park the car. GPS to a small forest beside a potato field."

From that page:
History

Prince Edward Island's highest elevation is only 142 metres above sea level, and is located in Lot 67, Queens County. The community on the hill is rather oddly named, being composed of two words suggesting a place lower than its surroundings: Glen Valley.

The PEI highpoint is higher than two USA highpoints: Ebright Azimuth-Delaware and Lakewood (Britton Hill)-Florida.
When Alex was 6 months old we moved from our little cabin to a big old farmhouse in Oyster Bed Bridge. (photo to the right is Alex shortly before we moved)

Thanx to Peter Rukavina for bringing this story to my attention.




Sunday, April 8, 2007

Friday, March 30, 2007

Detour - "Ashley Clark's Year to Remember" UPEI Cardre


This post has nothing to do with running but there is an Alex connection. I think this blog is a good place to allow for these little "detours" from the running path and so in future, if we post any such unrelated things, they'll be marked as such.

Actually there is a bit of a running connection here - I've commented to a few of his fellow runners lately that lately Alex has turned into a "weekend warrior" with his only weekday running being his morning 400 yard run down to the road to get the newspaper from the mailbox and back again as he likes to start his day by reading The Guardian. I've even threatened to let the subscription go when it expires so he'll have to run to the corner store every morning, a 4Km round trip, to get the paper. That would surely inspire him to train regularly like he used to.

Anyway.... the first night at Run UPEI, the first thing he did, upon walking in the door, was to grab a copy of the UPEI newspaper, The Cadre. I read it as he ran, we brought it home where he read it later. The latest issue has an article that caught my eye and, as always happens when I see or hear her name, made me smile - "Ashley Clark's Year to Remember".

Ashley Clark is having a year to remember but she is very much a part of "Alex Bain's Year to Remember". Ashley is the girl who, in Grade 1, taught (inspired?) Alex to talk. Ashley is the girl who befriended him (along with many others), played with him, hung out with him, helped him..... They were Mary & Joseph in the Christmas concert and had a close relationship in the classroom & school yard too. In February of Grade 1, Alex began to talk for her. (I have some really cool VHS video tucked away taken a day or 2 later that shows how it all came about, someday I hope to get it copied to DVD.) Once he began to talk for Ashley, to repeat anything she said, he talked for all of us, repeating anything any of us said and reading aloud everything that, until then, he'd been reading to himself.

Anyone who knows Alex today knows he has difficulty with articulation and knows he can be hard to understand sometimes. But, Ashley and Alex's classmates up until that February day, knew Alex as the kid who couldn't talk. I didn't think Alex was ever going to talk quite frankly. Although we worked on speech and he'd been in speech therapy since he was 2, his inability to speak wasn't a big concern for me, my focus was more on communication than speech. A report from his Speech Language Pathologist at the time states "With the consistent and enthusiastic support of Alex's teacher assistant and parents, Alex entered Grade 1 at Gulf Shore in September 1993, with the ability to use all of the following means of communication -- sign language, gestures, Canon Communicator, picture communication symbols, infrequent vocalizations and an immerging ability to print words".

Ashley moved away at the end of Grade 1 and did not return to PEI until they were in High School. I didn't see her again until the night of the athletic banquet in Grade 12 when she gave the blessing (and Alex won the Boys X-Country Award of Distinction ).

Thank you again Ashley. I have no doubt that you not only taught but learned from Alex. What you may not know is how many professionals learned a very important lesson from a very little girl about teaching and educating autistic children. As you continue on your travels around the world, we wish you all the very best.

I'll end with this piece from Alex I found recently. It's an English assignment he did in High School, in relation to Tony O'Brien's article "My search for the friend I left behind" about O'Brien's return to Afghanistan after having been imprisoned there in 1989.

The most important thing I have learn from my friends was to talk. When I was little I did not know how to talk but my friends helped me learn. I used to listen to my friends talk and watched them. Ashley Clark was the girl who I talk for in Feb 1994, grade 1. I read and typed at age 3. I only talked three words. I still learning to talk from my friends. I'm happy I learn to talk and my friends helped me.


Running For Autism
Not Against It
acceptance not cure