Connections magazine summer 2014

Connections The Down Syndrome Association of Hamilton Quarterly Newsletter

Summer 2014

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Welcome to the summer edition of DSAH’s Connections Magazine.

We are loving the warm weather, the sunshine, the beginning of sports leagues, and just being out in nature! In this edition, we bring you: inspiring words from our representatives who attended the Canadian Down Syndrome Society’s Conference in Fredericton (May 16-18), information on the DSAO 2014 Conference; a summer schedule for the Early Years Group meetings; updates on the website pages dedicated to The Walk; and touching stories from our members in our “Spotlight on DSAH” section. We would like to remind you that our publications are meant to be your communication channel. Please send your information, stories, photos- anything you would like to share with all members. We look forward to your continued engagement in this communication journey!

Happy 2014 summer season!

The Down Syndrome Association of Hamilton Communications Team

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On May 16th to the 18th, The Down Syndrome Association of Hamilton was proudly represented at the Canadian Down Syndrome Conference in Fredericton, New Brunswick. In attendance were: our President and CDSS Affiliate Representative, Jennifer Crowson; our outgoing Early Years Coordinator, Adelle Purdham; and our member Alyson Kowalchyk (who was elected on May 22nd as our new Early Years Coordinator).

The ladies strategically attended several of the presentations and events during the conference and have returned with a wealth of information to pass along to our members. An information night will be set up to share their findings and to distribute copies of the material they brought back with them. We will keep you posted!

In the meantime, we leave you with a write up from each of them describing some of the more impactful moments of the conference Enjoy!

I Am Here By Adelle Purdham, Elyse’s Mom.

“I have a place in this world. I am HERE”, shouted the young man clearly. I could see him, plain as day, standing at the front of the room, speaking to a crowd of people during a session presented by the VATTA group at the Canadian Down Syndrome Society’s (CDSS)2014 conference in Fredericton.

VATTA is a group of young adults with Down syndrome committed to showcasing their abilities and advocating for those with Down syndrome - such as themselves.

There is no denying people with Down syndrome are here. They have rights, and deserve to be treated as equals. But, to hear it firsthand from adults with Down syndrome was powerful and never to be forgotten.

Their words touched me emotionally, and I connected with them on a deeply human level:

“We are all human beings with feelings.”

“I am unique because I have Down syndrome, but I am not so different from everybody else.”

“My sister became a great nurse – compassionate and accepting – because of me.”

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“I’m one of a kind –just the same as everybody else!”

“I pay taxes.”

“I’m proud of who I am.”

The most memorable and lasting experience I took away from the conference was listening to adults with Down syndrome advocating for, essentially, their right to life. The session was called, “What Does Prenatal Testing Mean to Me?” and looked at historical views of people with Down syndrome, and how those with Down syndrome feel about themselves today. “I love my life,” one woman with Down syndrome pronounced. I believed her. Another man explained, “I have a wonderful girlfriend and we want to get married.” There was also a couple that both had Down syndrome serving on the VATTA board. All of these people stood for everything they believed in, and were the proof in itself of people with Down syndrome living meaningful, beautiful lives.

Back home, as I gaze down lovingly at my one and a half year-old daughter Elyse, who has Down syndrome, I think of their words: “We will surprise you.” I can hardly wait.

Facing the Future By Alyson Kowalchyk, Max’s Mom.

While pregnant with my son, with a very early prenatal diagnosis of Down syndrome, the future scared me. Would my son be accepted by my family? By our community? By ME?? It was my continued focus during my pregnancy: what would being an adult with Down syndrome be like for my son? My husband was great at bringing me back to reality, which was that we were having a baby. “The future will sort itself when in the present,” he kept telling me!!

That was almost 3 years ago. My son Max is now 18 months old, and while his first year was challenging because of his medical needs, we are finding our place in the Down syndrome community so much so that I recently attended the Canadian Down syndrome Society's national conference in Fredericton, New Brunswick. While

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my focus has shifted to the day-to-day realities of life with my son Max, and the rest of my family, the future still scares me, if I'm to be honest.

While at the conference, I attended great sessions; heard amazing people speak; and met people from all over Canada who were there to learn more, do more, and be more in their journey with Down syndrome. I did the same, but what I really left with from the conference was feeling much more positive, less worried, and ready to embrace the future for Max. Not because of sessions. Not from learning better ways to help him achieve, or for me to be a better advocate, but because of the amazing people at the conference!

Adults with Down syndrome, there living their lives and ENJOYING themselves. Speaking and leading sessions; being a part of the CDSS executive. But more, being the woman playing Beethoven on the grand piano in the hotel lobby; sitting in the lounge at the hotel having a beer with friends; getting morning coffee for their families. Everyday things that represent to me that life is not as difficult as I have feared!

Leaders in Words and Action By Jennifer Crowson, Owen’sMom.

Three mighty and inspiring speakers: New Brunswick Premier David Alward, Minister for Environment and Local Government Danny Soucy, and Self Advocate Will Brewer kicked off the recent CDSS conference.

Premier Alward told the audience how just that week, New Brunswick became one of the two places in the world to be awarded the UNESCO award for the education of disabled people.

Congratulations New Brunswick on this brilliant award. He pledged to make sure that schools in New Brunswick continued to show excellence in inclusive education – a goal we share here in Ontario.

The Honourable Danny Soucy was personal and charming. He spoke not just of his political achievements and beliefs, but what inspired him to be the leader he is – his children. He has four children and his youngest son has Down syndrome. He has clearly worked tirelessly to make sure his son is able to live the full life he deserves. He believes that it is not his son who needs to change, but rather it is society that needs to change to make sure all citizens fit in.

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His son’s name is Daniel and Danny Soucy used the letters of Daniel’s name to convey his message: D – dreams; A – advocate; N – normal; I – interdependence; E – energy; and L – learn to laugh. He shared family pictures, personal stories and professional moments to tell wonderful stories of how he brought meaning to the letters of his son’s name: all of which were inspiring to me.

Self-advocate and CDSS VATTA member- Will Brewer captivated my attention and the full audience when he spoke. He told us about his health challenges as a baby, his experiences at school, how he became a self-advocate, and his current ambition to become a movie critic. He inspired me to imagine what the future could be like for my son Owen, his peers and the many other children and young adults who our DSAH represents in Hamilton.

Growing up, Will told us how he did not see his hidden potential, but with the support of his family and friends, he found it, and he believes (as did everyone in that room) that he has many gifts and he will make this world a better place. He volunteers with a local group called Mission Possible and advocates for others with Down syndrome when he is not working at the local

Cineplex Theatre. He challenged the audience to discover our hidden potential, whether we are faced with additional challenges or not: we all have potential to be the best we can be.

Will Brewer told us how he was inspired by a John Quincy Adams quote, “if your actions inspire others to do more, learn more, and become more… you are a leader”.

Will Brewer is certainly a leader. He inspired me that day to learn more, do more and become more – just, as the two political leaders whom he shared the podium with had done. I will become a leader for my son and a forever champion for DSAH. I look forward to sharing what I learned at the conference with our membership at one of our workshops in the fall.

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We would like to extend a warm welcome to our newest DSAH Executive Board Members, elected on May 22nd during our Annual General Meeting: Alyson Kowalchyk and Paul Arnold graciously accepted the nominations for the positions of Members at Large.

Alyson and Paul are involved with the Programming Planning Committee. Alyson is also the Early Years Coordinator and will oversee the arrangements to have young families meet on a regular basis to network and socialize.

With the great weather, we are looking to spend more time outdoors and splashing in the water. Starting Wednesday, July 3rd, we will continue to meet at the OEYC in Dundas every THURSDAY. Alyson is also setting up additional meeting times and locations: Dundas Driving Park: July 7th and August 11th from 10am to 12 noon Winona Park: July 21st and August 25th from 10 am to 12 noon. Both parks have a wading/splash pad area and play equipment. NOTE: These will be bring your own picnic events!

Keep an eye on our weekly email reminders to let you know our date and location for our meeting.

Hope to see many of you then!

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The Down Syndrome Association of Ontario has announced the dates and location for their 2014 Annual Conference :

October 25th and 26th Great Wolf Lodge (Niagara Falls, Ontario)

Our DSAO Rep, Tara Cefaratti-McCarthy has provided a sneak preview of what is in store for this year’s conference. With regards to speakers, the selection so far has impressed the members of our Board. An actual agenda is in the works and will be presented to you as soon as it becomes available. Please consider signing up and reserving a room at the Lodge, which is a very popular destination and typically books up fast. Avoid disappointments by reserving as soon as possible! The conference is shaping to be inclusive for all ages.

NOTE: The Association has budgeted to support members interested in attending the conference by covering the cost of registration only. Interested in attending? Please email [email protected] to let us know.

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We are hoping to plan a summer social-a picnic and entertainment- for a weekend in the month of August. We are looking for people to lend a hand with organizing the event. Anyone interested, please email [email protected] . A notice will go out once we have finalized the details!

CONGRATULATIONS!

We would like to congratulate David Colantino who will be throwing the first pitch at the DSAH-Blue Jays game on Wednesday, July 2nd. We are certain that David will represent us well and that he will have a fantastic time at the game! Look forward to some pictures in the next newsletter!

Tickets are still available for purchase on-line; don’t forget to purchase your DSAH baseball cap as well!

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IT IS COMING SOON! Our Hamilton Walk for Down Syndrome (The Walk) Website is up and running! Have you had a chance to visit it? Go to thewalk.dsah.ca and bookmark it! While browsing our site, please check the many Sponsors & Friends of DSAH that our Walk Committee has secured. We thank this impressive group of committed businesses in our community! Please show your support and appreciation to those businesses that support us! If you know of a business that would like to sponsor us, please email [email protected] to give us the details. You can find the Sponsorship Package in the Sponsors Section of THE WALK site! We are creating the TEAM pages now, although we will not activate them until after the Blue Jays Game. Want to start a team or change the information (pictures, story, goal) from your page from last year? Click here to access the link to the Team Page Information Form. Have any questions? Email [email protected]

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Elizabeth Sanges participated in the Hamilton Wentworth District School Board Special Olympics and went to Girl Guides Sparks camp recently. Her mom, Teresa Sanges, tells us that she truly enjoyed these experiences! For information on Girl Guide Sparks click here

Thoughts on Scrabble, My Boyfriend, and My Life! By Kathryn Innes When I finished high school I was 21. Now I am 24. I beat my mom at scrabble game. I am good at word searches. I like to do rug hooking. I have two part-time volunteer jobs. At Boston Pizza two times a week, I break down big bags of frozen foods and put it in small bags for the cook. One day a week I help with the little kids at Colin McDonald Montessori school. I work out at McMaster 2 or 3 times a weeks and I ride a horses at TEAD. I have a boyfriend !

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Thoughts on The Future By Lisa Innes Transition out of high school can be difficult and requires lots of planning and coordinating by parents and schools. We've been very fortunate that Kathryn has been able to make what I think is a very successful transition to young adult life. She had to brag a bit about the Scrabble and the boy friend but who can blame her! One of the best things we did was to take a workshop offered by the Hamilton Family Network when she was about 16 to start making some plans. She has a place to go to each morning, either work or school and activities, hobbies and friends. Her life is full. The next step which may be more difficult, will be finding a way for her to live semi-independently on her own, I hope some time in the next ten years.

Don’t forget to send your news, stories, photos, and any updates you

would like to share with our community. You build this publication. Contact us at [email protected] to share your news with us!