Big day for the Pisani boys

The West Island Special Olympics organization held the end of the year celebration this weekend. Paul was awarded Coach of the Year and Louis received Outstanding Athlete of the Year for basketball. Louis's name will forever be on a trophy here in Quebec...and he received a small one for his collection. 

We are all extra excited because his name will appear on the trophy with fellow teammates, like his friend Curtis, who received the award two years prior.

They had a fantastic season, winning a medal  in the Provincial championships this past March. Louis loves basketball almost as much as Paul enjoys coaching it.

It was a bittersweet, as earlier in the day we said good bye (for now) to our great friends in the Eastern Townships at our Special Olympics ski team at Owl's Head. Our fellow skiers presented us with a cake and a priceless card with special notes we will treasure forever.

Danielle with her fellow instructors and peer volunteers....and good friends!

We will be forever grateful for Special Olympics Quebec...it's changed us all as a family and as individuals. We're taking everything we've learned from our Quebec friends and will jump into the programs in Illinois...minus the French of course. As our ski coach Art Zentner says..."one athlete, one coach." Paul and Louis will be recruiting a ski team for sure. 

The day reminded us of what we will miss about Quebec most of all...the people and friends we have made. We will be thinking of our fellow athletes, parents, volunteers and friends as we continue our journey back to the States.

The day also reminded us of how the "special" people in our lives bring new meaning to our own lives and provide us with experiences and friendships we might not have had otherwise. Without Louis and is (dis)abilities, we likely would not have been involved in Special Olympics and the wonderful programs we experienced in Quebec.

We're certain our paths will cross again.

So as we said to our friends recently....this is not a good-bye but....

à la prochain 

Is dignity a cultural thing?

I read this post today on a Special Olympics blog. It's written by Tim Shriver. It's appalling. I have to wonder....would this happen in Canada?



Raise Your Voice for Dignity!
Posted on January 18, 2012 by Tim Shriver

Many people have shared with me in recent days the tragic news about a girl named Amelia who was refused a spot on a waiting list at the Children’s Hospital of Philadelphia for a liver transplant because she is “mentally retarded.” When I heard about this, it made my blood boil.

Some have questioned why we in Special Olympics have mounted a campaign to challenge the humiliating use of the word, “retard.” Others have sometimes suggested that Special Olympics has gone beyond its mission in mounting the world’s largest public health campaign to close the disparities and outright bigotry that still infect systems of care delivery for people with intellectual differences. Still others wonder why so many of us speak with such passion about how sport is needed to unleash the power of the human spirit and to attack the vicious discrimination that so often crushes innocent people unjustly.

I say to all of them, open your eyes to the discrimination that goes unchecked all around us and help us stop it now!

If you are a medical professional, raise your voice for dignity now!

If you are a conservative political leader, fight for the dignity of all citizens now!

If you are a liberal political leader, fight for the dignity of all citizens now!

If you are a parent, raise your voice for the dignity of Amelia just as if she were your own now!

If you are a young person, blast the social networks with your commitment to Amelia’s dignity and justice now!

If you are a Special Olympics athlete or family member or coach or volunteer, challenge the status quo and fight for Amelia’s right to play and win the game of life now!

There can be no bystanders at moments like this. Amelia is everyone’s child. If she is denied care, we are all denied our humanity.

This is life and death and that’s not just rhetoric. Please join us in stopping this tragic injustice.

An inspirational weekend

Owl's Head Special Olympics 2011 from kish.pisani@gmail.com on Vimeo.

What can I say except it was a very cool weekend at the Quebec Special Olympics Winter Games. We are so proud of our TEAM....we had five athletes attend and six medals. The alpine ski competition was made up of the best Special Olympics skiers in he province!

Louis was amazing...almost too amazing. Something "clicked" with his technique in the last week and he improved tremendously. The first run on Friday was for divisioning and he nailed it! So much so that he jumped up in a division, which meant more competition. We were so proud that the came in 4th or 5th in all three of the races. But more importantly, he was there to cheer on his teammates, one of which won silver in their division -- twice! He lived the Special Olympics oath..."Let me win, but if I cannot win, let me brave in the attempt." He was so happy for his teammates (as you can see from the video) and we are so happy that he is such a good sport.

We asked him on Sunday night what his favorite part of the weekend was...thinking he would say skiing. He said "my friends." That's what it's all about.

He had a great time sleeping in a school classroom with his team...eating meals, going to a dance and the most amazing opening and closing ceremonies. All the ceremonies were in French which made it difficult for some of us, but in a strange way, we could understand it all.

We can't say enough about the power, inspiration and pure joy that comes from watching these athletes...all of them.

Compassion in Action

When you are the sibling of a someone with any sort of disability, it's known that you tend to grow up with more compassion, patience and understanding. We know this about Danielle. We were so proud, again, when we heard a couple of weeks ago that she won an essay contest entitled "Compassion in Action."

Before I go on...let me first say that it seems like our last few posts have been about how great our family is -- and our dog of course. That's not the message we're trying to portray here. In other words, it's  not meant to be like one of those annoying Christmas newsletters where the writer is bragging and bragging about this and that. When we brag, it's because we deserve it, dammit. While blessed in so, so, so many ways, we've certainly encountered many, many obstacles, not unlike many, many others. Trust me, we're not perfect. On any given day we could easily find ourselves on The Dr. Phil Show. Seriously, just ask the neighbors come spring time when we forget the windows are open and they hear us on a not-so-perfect day.

That being said, we do get to brag about Danielle, again. She deserves it. When we moved to Montreal six weeks into her Freshman year, it wasn't easy.  Imagine one of her first classes on her first day of school being a discussion about gun control. Danielle had to make the comment that not all American gun owners are evil and that most every member of her mom's family owns guns...and her dad too but we decided to leave them in the U.S. Let's just say, it wasn't the best day for Danielle, but kudos for speaking her mind and defending her country in a way that would even make Sarah Palin proud (it's hard for me to write that). Even more challenging was sitting through a year of history class in French.

A few months ago, Danielle submitted an essay contest called Compassion in Action sponsored by LEARN (Leading English Education and Resource Network) in Montreal. In the essay they were to write about a person or group who has made a significant difference to the community or world through compassion and leadership. Danielle chose to write about Eleanor Roosevelt in an essay called Eleanor Roosevelt: The Woman Behind the Declaration. Specifically she addressed Roosevelt's role as the most influential member of the United Nations Commission on Human Rights.

Bravo!

The award was announced in the middle of her class when members of the organization and the Headmistress of the school came into the classroom. She was most surprised.

For winning the award Danielle received a scholarship to attend Encounters with Canada (EWC) in Ottawa. This program is a week-long gathering of kids from across Canada to gather and learn and experience different topics. After this week she'll become one of over 85,000 Canadians who have already taken part in this remarkable experience. And we bet she's only one of a handful of Americans to ever attend this program.

Danielle left tonight for Ottawa where she's attending the "Politics in Canada" week. She'll have the opportunity to go to Parliament, meet her MP (Member of Parliament), go to meetings, meet other Canadian kids and more. She will spend the first week of her March break (she has the next two weeks off school) in Ottawa at Encounters with Canada. The Headmistress (like a principal) of her school, who herself is a graduate of this program in Ottawa, was so pleased with Danielle's accomplishment that she offered to pay for her transportation. This being the case because Danielle is not a Canadian citizen or landed immigrant, yet. Yes, we pay high taxes. But -- get this -- the government pays for the transportation for all the kids attending this program! And, the Headmistress said she could miss a week of school if the week she chose did not fall during March break. As it is, Danielle decided the Politics in Canada would be the most interesting program even though she had a free pass basically to attend one later in March.

Bon Voyage Danielle! You exemplify Compassion in Action each and every day.

Following is an excerpt from Danielle's school website announcing the award.


Grade 11 student Danielle P. learned this week that she is one of the winners of the Compassion in Action Writing Contest, offered by LEARN (Leading English Education and Resources Network) and Encounters with Canada.

To be eligible, competitors between 14 and 17 years of age had to write an essay about a person (or group) who has made a difference to the community (or world) through their compassion and leadership, or is in the process of transforming a community (local, national or international) for the better. The contest also challenged essay writers to include an element that would inspire others to make a difference in their community.

Danielle wrote about former First Lady, author, speaker, politician, and activist Eleanor Roosevelt, clearly impressing the judges with her essay. She says she chose this topic because, “Eleanor Roosevelt has always been an inspiration to me; I want to go into International Relations and Politics when I’m older.”

Danielle learned about her win when representatives from LEARN and Encounters appeared in her classroom, and made the announcement, taking her completely by surprise. Her prize will be a fully paid week at Encounters with Canada- the country’s largest youth forum – compliments of LEARN.

Danielle will join 135 other students from across the country in Ottawa for the theme week of her choice, taking part in unforgettable workshops, presentations, excursions and cultural activities. An American by birth, she says she’s “really looking forward to having a Canadian perspective on international relations or politics to meeting people from across the country.” EWC has been offering rich and diverse programmess for 29 years. Over 85,000 youth have already lived the EWC Experience.

To find out more about the contest and LEARN, go to www.learnquebec.ca. 

For information about the Encounters with Canada programme, visit www.encounters-rencontres.ca.

_______________________________________________________________________________________________________

ESSAY EXCERPT: Eleanor Roosevelt: The Woman behind the Declaration

“All human beings are born free and equal in dignity and rights. They are endowed with reason and conscience and should act towards one another in a spirit of brotherhood” This first article of the UNIVERSAL DECLARATION OF HUMAN RIGHTS seems quite simple doesn’t it? A basic human right is to be born free and what a simple right it is. No one is created better or worse than another and no one deserves to be discriminated against, hurt or misrepresented by anyone else, which is all in keeping with the idea that one should act towards another in a spirit of brotherhood. Sadly, before one such great woman, the right to be born free and have equal rights was merely a privilege granted to those in power. One woman used political power, the media spotlight, leadership and, most of all, compassion to change not just her country, but the world as well. This woman was none other than Eleanor Roosevelt.

Unlike the first ladies of the United States that preceded her, Eleanor Roosevelt felt that she needed to exceed the traditional duties that they had come to be marked by the first ladies that preceded her. While her husband was in office for 12 years, she felt it was her duty to use her leadership to change the world. In fact, she is considered by many historians to be a major contributing factor to Roosevelt’s presidency, as she was the face of his campaign shortly after his diagnosis with Polio.

Repeat Gold

It's Valentine's Day and my heart is warm. Louis won Gold again over the weekend at this year's Provincial Special Olympics Alpine Ski Championships. It was a long and rewarding day for Louis and all of his fellow athletes. And for the parents, coaches and volunteers.

It was the oddest weather day...one minute we would have a white out and then the sun would come out and then another white out. The conditions were difficult for the athletes with many of them falling on the race course. It's always hard to watch a fall. But each and every one of them would get up, put their skis back on and finish the race. (they can't receive any help on the course, if they are even touched by anyone they get disqualified). They did great despite the weather, not being able to take a practice run and only being able to do one Giant Slalom in the morning and Slalom in the afternoon.

This race prepared the athletes for the upcoming Special Olympics Quebec Winter Games March 4-6. Louis will join his team and the other racers and winter sports athletes from around the Province for a weekend of competition. We are ready!

Louis gets ready for his race

Danielle was his coach for the day- cheering him on as he skied and at the bottom

So proud

While training with our Special Olympics group yesterday, I saw something that made me so proud. Danielle volunteers her time as a certified ski instructor, teaching Special Olympians ski techniques, encouraging them, helping them, supporting them, laughing with them. Sometimes it's not easy. Sometimes it's frustrating. Sometimes it's not so fun. But the rewards are priceless.

I was helping at the race course and looked up on the chairlift to see Danielle with our newest skier, a young man with Down Syndrome. This young man would not move his feet forward to even put on skis last week. (Don't ever assume that people with disabilities are not stubborn!) The week prior, he spent time on the "magic carpet" -- an area with barely an incline which is used for new skiers.

So yesterday after a time or two on the magic carpet, Danielle decided this young man was ready for the ski lift and to get skiing. She got him on the lift -- no small accomplishment -- and up they went. (He didn't have a lift ticket -- that's our girl -- plow ahead and ask questions later.) That's where I saw them and I have to admit, I though "oh shit" what is she doing?

She was teaching this young man how to ski.

And ski he did. Was he fast? No. Was it perfect? No. Was he up on skis, trying something for the first time? Yes. Is he a Special Olympian? You bet.

Danielle did it too. She was amazing. And patient. And kind.

Our new skier got tired. He sat down after a while and did not want to get back on his skis. That's okay. Danielle told him it was okay because he tried and he accomplished so much. He was skiing.

The most interesting part of this day? This young man only spoke French and didn't know a word of English. Danielle taught him in French.

It was a good day for everyone and she made her parents proud. Très bon Danielle.

In training

We are in the thick of ski season -- in more ways than one. We actually enjoy the snow...mainly because the ski conditions are great and well, we like it. Ask us again in mid-March though. Ski season for us means Special Olympics training. Each and every weekend we are skiing in the Eastern Townships of Quebec getting ready for upcoming competitions. Louis will compete in the Quebec Provincial games in February...and...in March he will compete in the Quebec WINTER games. The Winter games is a gathering of all the winter sports. They will have an opening and closing ceremony, an athlete's village and more. The athletes all sleep in the "village" which is actually a school gymnasium with cots. What fun (for Louis). Paul, who is now an officially sanctioned Special Olympics coach will be in the village as well. Kish and Danielle will stay in the local motel.

We are wrapping up selling raffle tickets to benefit Quebec Special Olympics. The $5 tickets makes you eligible to win a bunch of great prizes...including a trip for two to Greece and a weekend in Quebec City. If you are interested in purchasing tickets, email us. We have a limited number left. Thanks so much to everyone who has purchased tickets. We sold a lot and the proceeds will benefit Quebec Special Olympics and our ski team.

Enjoy the snow or the sunshine wherever you are.

A special family visit

Paul with Adam, Art, Cindi and Placido Swanson

We were thrilled when the Swanson family from Naperville made a stop in Montreal on their road trip around most of the Great Lakes and through Canada. It was very unfortunate that I (Kish) had to make a last-minute trip out of town and didn't get the chance to break bread with this amazing family. Thankfully, Danielle is quite good in the kitchen and Paul's favorite Italian market was open on Labour Day (most big stores were closed) and they put together a nice lunch. They even cleaned the house which I kept saying was not necessary. That's because, well, the guys don't care and my friend Cindi...is blind. She wouldn't know or care if there was enough dog hair in the corners to stuff a pillow. Plus, her assistance dog Placido was coming too and we could always blame yellow dog hair on him. Just so long as the bathrooms were clean. And they were, I'm told. 

I met Cindi at our church in Naperville. She was, and is, the special needs coordinator at our previous parish. She was doing this job long before one jerk (hint--Beck) started mouthing off suggesting we run from our churches if we hear the words Social Justice. She's also a social worker, mom or three -- her middle son with Down Syndrome -- and as mentioned earlier, she is blind. She does not let her disability stand in her way and she represents all that is good about Social Justice and the whole concept of WWJD? She and Art paved the way in Naperville and Illinois for the Pisani family...and hundreds of others but advocating in church, school and the community.

Cindi met with me many times to find the right words to use in IEP meetings to help get Louis the services he was entitled to -- because everyone is entitled to a fair and appropriate education...including those with disabilities. She's also the most passionate advocate I know. I remember driving her home from one meeting (remember, she can't drive) and we were talking about how the Catholic church in general needs to get even more involved in helping those with special needs, and in particular those with intellectual disabilities. She used the words Social Justice before we heard it from that guy, believing that providing services for those with disabilities is the epitome of Social Justice in any community. Out of her mouth came these words..."if a Parish can help support {BEEP} goats in Guatemala, they can help support people with needs in their own community." Disclaimer...she was not referring to our Parish...but 'The Church' in general.

The Swanson's are HUGE hockey fans too. We had fun exchanging news throughout the Stanley Cup playoffs. Art knows more about the Canadiens than the Canadians. Seriously. This family has also been a big part of a special program in Chicago called the Tomahawks. They helped start a garden/nursery that employs people with disabilities called We Grow Dreams. They even moved to downtown Naperville to ensure that their son Adam can walk to work and to make sure that people in the community know Adam and look out for him. Remember, Cindi can't drive, so making sure everything is walk-able is a necessity, not a luxury. There are some days when I want to have a solitary pitty party and I think about what if I too had a disability. I never admitted this to Cindi because frankly, she refuses to let anyone feel sorry for her.

Cindi and Art made sure kids like Louis could attend religious ed classes with their peers, participate in sports, be in the same class with their peers, get jobs in the community and more. We've learned a lot about our future from this family. More than anything though, we've learned about the present. 

The boys are back in town

Paul and Louis spent a whirlwind weekend in Chicago visiting family and friends and happily attending two White Sox games. Frank Thomas -- Paul's all-time favorite Sox player -- was being honored on Sunday at the game. They went for that celebration and so Louis could spend some time with his best buddy Liam and see his other "old" friends. One of the hardest parts of moving from Naperville was leaving a secure friend situation for Louis. We have to admit though that the kids here in Montreal have been fantastic to Louis.

Liam is someone special for all of us. It's been "Liam and Louis" for over ten years -- Liam and Louis have known each other since they were two. In fact, when they were younger, they were often mistaken for one another. Our families have become good friends over the years and we've been fortunate to spend vacations and holidays together.  We don't have to be on guard when we are together -- in other words -- we can yell at our kids, roll our eyes at meltdowns and generally not feel self-conscious if we lose our shit. Not that we ever do, of course.

At Bears training camp in 2005 when the moms decided to take a day trip -- this photo was taken just before all hell broke loose between the four kids...just like siblings. There was a lot of yelling going on.

I was talking with Jackie (Liam's mom) yesterday on the phone after the tornado of two boys and two dads left her house with luggage, tailgating necessities (no sunscreen of course, we are talking about dads) and White Sox gear to head to the 1 pm game. We were talking about what their relationship would be like if we still lived there. We both agreed they would still be close. We also agreed that as the boys in the neighborhood get older, kids tend to go in dozens of directions. However, at the same time as kids with special needs get older (Liam is autistic) these kids with special needs tend to spend more time together at school as the gap between "typical" kids gets bigger. In elementary school Liam and Louis were always separated by classrooms. They never had classes together because as one teacher said "they are a bit physically intimidating." Ya think?  Plus, they are so comfortable together it would be like having siblings in the same class, something that is not often practiced.

What could possibly be "intimidating" about these boys in the classroom? It was fun going through old photos...they've played many sports together. This Colts photos was their first football game on the same team and they were appointed captains for the opening game. circa 2005.

The Louis/Liam relationship is something special. It's important that we get the boys together a few times a year and  both families have made it a priority. The Kirstein family came to visit in 2009 and it meant the world to us.

Later that year we met up in Gulf Shores, Alabama. It's always been interesting to watch the two of them communicate. Louis' speech has improved a lot over the last couple of years. Of course, it's not at all "typical" and likely won't be. But Liam has always been able to understand Louis, to know what he's thinking, and often to communicate for Louis (teachers really love this) when he couldn't communicate well himself. We could often overhear the two of them "chatting" or more often yelling cheering at a game on TV or in person. But sometimes they would just be silent, yet still communicating.

Siblings of special needs kids share an important bond. Danielle and Gen have become good friends too during the year. They have the same energy and look out for their brothers. It's really cool. 

Seeing the boys together is priceless...

At the recent White Sox game

Watch out Bode Miller

There's another American tearing up the slopes in Canada....

Our media star....to see an article on Louis and Special Olympics, click HERE

We couldn't be more proud....

And in case you can't get enough...there's another article HERE


P.S. If after reading the first article you're wondering why Kish changed her name...or didn't change her name...you can read about that in a post from last year HERE.