Helen bring peoples together to build communities. She believes that together we can build solutions to difficult problems, generate new ideas and solutions or get a sense of belonging for a better quality of life.
The two principle community building projects Helen is working on are:
SUPPORTING AND CARING FOR OUR SIBLINGS WITH DEVELOPMENTAL DISABILITIES
Helen looks for ways to bringing together individuals who have siblings with developmental disabilities.
In the past 30 years, the family arm of the disability movement, usually parents, has made incredible strides in advocating for the economic and social rights of their family members with a disability. A demographic shift is underway. People with a developmental disability because of better health care and participation in community are living longer and healthier lives, and in many cases outliving their parents. Many people with developmental disabilities remain in the care of their parents for the duration of the parent’s lifetime. When the parents pass away or are no longer able to provide care, often it is the sisters and brothers who take over the caregiving role. And very often brothers and sisters have not typically not been part of the ongoing care conversation.
Individuals with a sibling with a disability are finding themselves in a position of caring for their siblings without the tools, resources and information they need to succeed in providing a good life for their bothers and sisters with developmental disabilities,
Helen is working on building the family arm of the disability moving to include individuals who have siblings with developmental disabilities, particularly those who have or will have supporting and caring roles.
Below are a online resources, learning opportunities, gatherings and reading for this community, particularly the Canadian community.
Helen started and is facilitating a closed Facebook group for Canadian siblings. This group offers information and hosts conversation among siblings in Canada. https://www.facebook.com/groups/siblingnetwork/
There is a US-based Facebook group called SibNet that hosts discussions from siblings from all across the world. https://www.facebook.com/groups/SibNet/
The Empowering Abilities Podcast (Canada) has a number of episodes related to siblings. They are listed below:
- Listen to this podcast episode #39 with Don Meyer, Director of the Sibling Support Project. Don is one of the world’s leading experts on siblings, and has supported siblings for the last 35 years. https://www.empoweringability.org/single-post/2017/11/30/039-Siblings—Our-Most-Important-Relationship-with-Don-Meyer
- Helen is interviewed on Empowering Abilities in episode #09 https://www.empoweringability.org/single-post/2017/05/01/009—Helen-Ries—Siblings-empowering-siblings-with-a-disability
- Melissa Janson is another sister who shares her story in episode #32 https://www.empoweringability.org/single-post/2017/10/10/032-Siblings-and-The-Power-of-Why-Not-With-Melissa-Janson
PLAN Institute (Canada) has a comprehensive Learning Centre with lists of workshops, books and resources to support siblings and families in future planning and support network development http://planinstitute.ca/learning-centre/
Bringing together Siblings
- Been organizing sibling meet ups in the Ottawa, Ontario, Canada.
- Been working at forming a Canadian Sibling Collaborative with the purpose to connect siblings for learning and support.
- As part of the Collaborative, has launched a national survey to better understand sibling needs and challenges
- As part of the Collaborative, designing and planning for a sibling conference for 2019.
Adult Siblings of Individuals with Intellectual Disability/Autistic Spectrum Disorder:Relationships, Roles & Support Needs, National Disability Authority (Ireland), 2016
Caring for a Sibling with a Disability, Easter Seals Disability Study (United States), 2012
Paul’s Extended Family
Helen has been community building around her brother Paul. She created Paul’s Extended Family, bringing together a network of caring relationships around Paul to help oversee his well-being, participation in community and his future security.
A good life for Paul is no different than a good life for anyone else. It includes:
• friends and family who love him and spent time with him,
• a safe and happy place to live that he chooses,
• financial security,
• participating in decision making about his life and,
What does it mean to be part of Paul’s Extended Family?
Paul’s Extended Family is a dynamic and flexible group who can share when and what they want with Paul.
Members of Paul’s extended family would spend time with Paul. Check in on his well-being while you are with him. You can do an activity with him such as have coffee, go for a walk, go to an event you and Paul would like to attend, go with Paul to church or even just call Paul up to say “hi”. (micro-volunteering)
We hope that members of Paul’s extended family can also join us for events, like potlucks and parties or just stop by if you feel like it (community building).
Paul is highly intuitive and sensitive, he knows when you are “just not that into him”.
If you are with him, please be fully present with him.
Scheduling is a challenge for Paul
Paul has some challenges with scheduling. He doesn’t always know when he is free and he tends to double book. This is why we have listed his available times on the calendar. If you wish to meet with Paul at another time, it is a good idea to double check with Helen that he is indeed available. You can email Helen at firstname.lastname@example.org
If you would like to book with Paul directly (although this calendar is not always up to date), please use https://paulknoll.youcanbook.me/
Change your plans with Paul directly
If you do plan an activity; but you have to cancel, please cancel with Paul directly over the phone.
We have had many years of experience of people, involved with Paul who must stop for one reason or another but instead of calling Paul and talking to him they will send me or my parents an email. Paul takes this very personally, he feels dumped and like he has done something wrong. We ask that you call him directly to discuss any changes to plans.
Paul will pay his own way.
What Activities Does Paul Enjoy?
Here are some of Paul’s favourite events and activities. If you have the time and inclination to do one of these with Paul, he would be thrilled.
Paul adores going out for coffee (Decaf only!). Do you have 45min to 1 hour to spare to go out for coffee in Westboro?
Drinking beer and eating nachos
Drinking beer at a local pub, especially one that serves nachos is a big treat.
Going to Church
Paul is a man of great faith. He values his church community very highly. He goes to church about every second week and would really like it if someone could keep him company, help him engage in the many activities and build his sense of belonging.
Nordic Walking (Urban Poling)
Paul would often go Nordic Walking around the lanes through the fields at the Experimental Farm (Ash Lane, Cow Lane and Morningside Lane). He would like very much if you would go with him in the spring, summer or fall.
Reggae on Westboro Beach
In the summer Paul is a regular at Westboro Beach on Saturday night. He likes to order a burger and fries, watch the band, and sometimes dance.
Biking on the Parkway
Paul has biked on the Parkway on Sunday mornings ever since he was a kid. He would love your company for a ride to Britannia Beach and back.
Shakespeare in the Park
Paul is a die-hard Shakespeare fan. He would love to join you in the park for a play.
Going to the National Arts Centre
Paul loves the classical music series at the NAC. He likes to help conduct the orchestra.
Singing the Messiah
Christmas is not Christmas until the Messiah has been sung. Paul would love to join you for this event.