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Giving Patrick Independence – A Video by The Saskatchewanderer

The Saskatchewanderer spent some time this spring hanging out around COR capturing some footage of Patrick and his friends! Here is what he had to say:

“No two people are the same. That is the philosophy behind Creative Options Regina (COR), an organization that provides personalized support services for people with disabilities. The staff at COR tailor supports for each individual to help them discover their talents and interests and to help them reach their personal goals. COR has helped Patrick find full time work, develop an active social life and live independently in his own home. I first had the pleasure of meeting Patrick during a sports night at the Core Ritchie Community Centre in Regina, and I immediately understood his nickname — Energizer Bunny.”

A special thanks to the Government of Saskatchewan (Ministry of the Economy) and Neil Fisher (The Saskatchewanderer) for making this video possible!

Click here to learn more about The Saskatchewanderer.

-Michael

We all want the same things: to feel safe, to love, and to be loved.

I am so thankful for the training and knowledge I have received from COR. At the time I was hired I was simply looking for employment that was person centred in which I would be able to work closely with people. When I think about other agencies I could have worked for, I am truly happy I chose the path that I did. I understand that social work can be a very difficult job in which I may be required to follow strict policies which do not appear to better the individuals I am serving. At COR, I always feel that I am doing right by the individuals I work with and value the strong relationships I have been able to develop in such a short period of time. I owe this to the gentle teaching training I have received.
I believe we should be viewed as equal to those we support at COR; this is why I love the terminology of “support person” or even better a “friend”. I enter someone’s life and learn so much about them- their fears, their dreams, their hobbies, their family, their past and so on. I partly create my culture of gentleness by allowing them glimpses into my own life to be viewed as an equal. Having them over for lunch, allowing them to meet my family, and opening up about myself. I believe this allows people to feel more comfortable with you and that they will then feel safe opening up to you. Additionally, I always ensure I do not pass judgement. If someone opens up and tells me something about themselves or confesses something that has been bothering them, I ensure to be conscious of my facial expression, body language and tone when I respond. This allows for an open conversation in which they will come to me in the future and feel that they can talk and open up without judgement. COR has taught me about the power of my tools- my hands, my eyes, my tone… these can all have such a huge effect on your ability to make someone feel safe with you.

I always feel that I am doing right by the individuals I work with

In my eyes, a culture of gentleness can be broken down to simply mean what do we all deem to be valuable and important in our lives?

We are all individuals and yet, at a basic level, we all want the same things. To feel safe, to love, and to be loved. I have had the privilege of feeling safe in my life and it requires empathy to understand even the tiniest glimpse of what some of the individual’s supported at COR have gone through and what can change in your life when you no longer have to fight for basic needs. I have witnessed firsthand how much it means to someone to be able to give- to show love. For those I support to be able to teach me about something, to make me lunch or buy me a coffee; this means that they view me as a friend and care about me just as I care about them. I am proud to be a member of COR and proud of the strong relationships and friendships I have developed.

 

Shandrea, COR Support

I believe it is extremely important to remember that we are all equal regardless of our ability level.

When I think about COR and the individuals I serve in relation to a culture of gentleness, I think it is extremely important to remember that we are all human beings and deserve to be treated with respect and dignity. Treating people like people, and not like patients or clients shows these individuals that they are loved, important and cared about. By doing this, it ensures each relationship I have with the individuals I serve to be authentic and meaningful, and in turn allows for this culture of gentleness to develop and flourish over time. I approach each individual support time with a positive and friendly attitude, because I know that this will let the individuals I serve know that I want to be there, and I am happy to be in their presence every time I am with them.

I also believe that in order to maintain a culture of gentleness I need to love the individuals I support unconditionally. It is often easy to get frustrated, angry or upset when unfavourable incidences arise, but as a support I consciously make an effort to show that my respect, love and loyalty will not alter regardless of the situation. As a support, I always encourage the individuals I serve to pursue their passions and become involved within their community to not only enhance their own lives, but also the lives around them. By doing this, it shows these individuals that they are both capable and important members of our team and community. Those within COR that I support learn that they have the ability to positively impact someone else’s day. The safety of the individuals as well as the team is very important to me, and I believe that if I am able to provide a gentle environment through my words and my actions, everyone is able to feel much more safe within their home and with everyone around them. When situations arise that may not be safe for myself or the individual, I make sure to stay calm and remember to respect everyone involved not only to act a positive role model, but also so that a safe and positive outcome occurs.

During my time with the individuals I serve, I make sure that they know how individually special they are

During my time with the individuals I serve, I make sure that they know how individually special they are, that they are loved and cared for by many and that I genuinely enjoy and cherish the time that we spend together. I do this not only with my words, but also with my consistent display of true unconditional love for each person that I support and support with. I believe this is critical in ensuring a gentle environment and relationship. Ultimately, I believe it is extremely important to remember that we are all equal regardless of our ability level. I truly believe that the only disability in life is a bad attitude! When we treat those we support, and support along side as equals, everyone is able to feel safe, supported and loved by one another and this is how true relationships are built.

 

Sawyer, COR Support

 

I trust people at COR.

“Well I like COR cause people get along. They don’t fight, they don’t hit, and they don’t hurt kids. I feel safe. I know everything isn’t cheap, but I work hard for my money. I work 2 jobs. My life was not going very good before. My life was going down instead of going up. Now my life is going up. I don’t have to put up with people that try to hurt me because I know no one is going to hurt me. If I have a problem with people I can talk to them and they listen. I’m glad my friend helped me when my back got sore. If someone was afraid or something, COR would say “I’m not gonna hurt you, you can trust us”. I trust people at COR. I was scared at first. Oh yeah, it was scary. It was really new. That was a long time ago. I was scared of my new boss and my new job for a while too. I got used to them. I have to get used to my job’s new building now.”

– Peter

I like cor because people get along

Hands-on approach made a world of difference

Hands-on approach made a world of difference | Video

Tara Schmiedge curls up on a pile of fluffy white pillows, swinging on a circular bed suspended like a cloud from the ceiling of her basement living quarters.

Her mom, Margot, crawls in next to her, iPad in hand, to look through family photos. Childhood scenes of Tara and her three sisters quickly transition to a newborn baby, pink and swaddled — Tara is now an aunt, and Margot a grandmother. The two laugh as they sway gently back and forth, two peas in a floating pod.

Tara, 25, has Kabuki Syndrome, a relatively rare genetic disorder that causes cognitive delays, behavioural issues and a wide range of medical problems.

These days, Tara is at ease in her world. She shares a northwest Regina home with another young woman with a disability and the support workers who come and go around the clock. She has a specially designed, one-on-one day program that meets her needs. Her parents, Margot and Dean, visit regularly and make sure her life is full of love and encouragement. They have fought tirelessly to make sure she has adequate support to do the best she can with her abilities.

*****

As most families with a disabled child find out, it’s never easy.

The Schmiedges started taking Tara to Winnipeg for sensory therapies as a preschooler, before she was diagnosed. They knew she had cognitive delays, something they could see when comparing Tara’s development to that of her two older sisters, Leah and Kyla, and younger sister Erica.

Doctors originally thought Tara might have osteogenesis imperfecta, since Margot had a family member with the congenital bone disorder.

“We knew that wasn’t likely the right syndrome,” Margot said, noting Tara’s cognitive delays didn’t fit that diagnosis.

Then Tara was diagnosed with Kabuki Syndrome by a Winnipeg geneticist at four-and-a-half years old. It was a relatively newly-categorized disease, first described in 1981 by Japanese scientists.

“Having a child with a disability can really make you feel like an island,” Margot said, tucked into a comfortable chair in her home a few minutes’ drive from Tara.

“You try to maintain your friendships from before, and you do, but your life goes in a whole different direction than the majority of people.”

It was that isolation that encouraged Margot to pen a letter in a medical genetics journal about a year after Tara was diagnosed.

Using a family friend’s then-advanced method of communication — an email address — she was soon inundated with requests to keep in touch and share information about Tara’s development and challenges. They quickly had to invest in a computer and a dial-up Internet connection of their own.

A website was also necessary. But in the mid-1990s, it wasn’t quite as easy as it is today to post things to the mysterious world wide web.

Margot enlisted the help of her brother, Ed Zwart, and his partner Janice Banser. The two technophiles made Margot’s dream for a network where families could connect and share information a reality.

And so the Kabuki Syndrome Network (KSN) was born. If you search Google for Kabuki Syndrome today, it is still the top hit.

Over the past two decades, Margot has fielded thousands of requests for information in multiple languages from her home. Some were from researchers; other requests were from families unsure of where to turn with their new diagnosis.

Her background as a nurse — she stopped working when Tara was born — helped in explaining the complicated terms to other parents, including writing a medical dictionary.

Newsletters were the next step. They were printed and mailed out for years, before moving to an online format. Brochures came out in several languages — Margot got a language school to translate portions of the website into Spanish to meet demand. She even reached out to geneticists and doctors to write articles that the average parent could understand.

“Little things like that started adding up to provide a bigger source of information,” Margot said. “It’s funny how things snowballed. I never set out to do this, never.”

From supporting newly-diagnosed families reaching out for help to assisting doctors looking to explain the disorder in layman’s terms, the quiet force behind a mountain of information has been passionately advocating not only what’s best for Tara, but what works for other children around the world with the condition.

“She’s really an amazing, one-woman magician,” said Dana Levinson, a Minnesota mom of a seven-year-old girl who also has Kabuki Syndrome.

When Levinson’s daughter was diagnosed as an infant in 2008, she soon found there wasn’t much local support for a syndrome with an incidence rate somewhere around 1 in 10,000. Reaching out to Margot and the KSN was a major step in learning how to live with the diagnosis.

“Kabuki was first discovered in the 1980s and really since then (Margot)’s been the main person providing info, identifying professionals, connecting families,” Levinson said.

Levinson not only wanted to learn more about the syndrome but also become involved in helping shape what the KSN could become. She’s leading the organization’s efforts for the first-ever Kabuki Syndrome conference, which will take place at Johns Hopkins University in Baltimore this summer.

Meeting other families who have a child with Kabuki Syndrome has been “so helpful”, Levinson added.

“These are kids that tend to have developmental issues. My daughter wears hearing aids and she had a feeding tube, so just meeting other kids that may have had similar experiences is good for her for having a social support group, too.”

KSN has been a support for the Schmiedges too, leading to long-term friendships and visits while vacationing, but it didn’t always hold the answers to every problem.

“Tara is definitely on the higher end of physical disability and sensory issues and because of that she had many, many behavioural issues from about 13 on,” Margot said.

It was something that the family had to face mostly on their own. Their lives got “very complicated.”

In some instances, Tara would hit and bite. Her obsessive tendencies and anxieties were a part of daily life.

On a family camping trip, Margot brought along Tara’s favourite cookies — a huge motivator for Tara at the time — but she wouldn’t eat them. She barely touched food the whole weekend.

“We get back home and we’re unpacking the food, and she brings her cookies to the cupboard where the cookies go. She sits down, goes back to the cupboard, takes the cookies out, and starts eating,” Margot said. “Those cookies had to come out of that cupboard.”

School also became too much for her. Tara stayed in high school until 22, but was only managing a couple of hours per day by her last year.

Judy Humphries, Tara’s former student support services teacher at Michael A. Riffel High School, said the system can be hard to navigate for parents who aren’t sure what their options are for their child’s post-high school life.

“The transition is difficult sometimes for the students themselves, because they’ve been at their particular school for up to eight years, some of them. It’s hard to leave,” she said.

For students like Tara, the existing day programs may not be the right fit.

“There were things that Tara’s parents knew would not work for her,” Humphries said. “They could’ve just thrown up their hands and said ‘We give up, wherever she ends up will be fine,’ but that’s not what they did.”

Instead, Margot designed a day program for Tara that comes with one-on-one support. She does various tasks during the day, from collecting recyclables to delivering Meals on Wheels. In summer, she likes watering community gardens.

It’s a different path than some other young adults with disabilities take, and one that required letter-writing and many meetings.

“I’m a bit of a doer myself, it’s in my nature. We had to really fight to get her what she needed,” Margot said.

“All young people with cognitive disabilities should have those kind of parents,” Humphries added. “They need someone that’s just looking out for them.”

*****

Tara was finally designated as “complex needs” — a designation not given lightly.

It means Tara has access to special funding for her housing and day program.

The Schmiedges’ advocacy work for their daughter is far from done. Her home had three other young women with disabilities when she first moved in and Tara had daily meltdowns over the pressures of living away from her parents and the constant stream of visitors and staff.

“It was very, very difficult for Tara,” Margot said. “We tried to prepare her. We’d go to the house before anyone was living there, show her where her bedroom would be.”

But it didn’t sink in, and the first year was terrible.

Daily panicked phone calls begging to come home were hard to face.

But it was an important step for not only Tara to make, but for her parents, as they too needed to have some space. And once two of the residents were moved to a new home, it became a lot easier.

“I like that we get to enjoy her now. I really like that. It’s not that we never enjoyed her, but I really just enjoy her now.”

Tara is doing “amazing” these days, she added.

“She’s a sweetheart, an absolute sweetheart. Everybody that gets to know Tara falls in love with her. She has challenging behaviours but once you know how to go around that, she’s really very endearing and so truthful.”

The efforts they’ve put in over the years have not only improved their own lives, but those of many other families with Kabuki Syndrome. Yet, Margot doesn’t think they’ve done anything extra special.

“There are parents that believe that it takes special parents to raise a child with special needs, but I don’t share this philosophy,” she said.

“I think you have a choice to make when you have a child with special needs. You either work very hard at it, or you drown in the immensity of it. And I think Tara taught us the patience.”

_____________________________________________

What is Kabuki Syndrome?

— First described in 1981 by Japanese scientists and named after affected individuals’ facial resemblance to traditional Kabuki makeup

— Affects anywhere from 1 in 10,000 to 1 in 30,000 live births

— Caused by spontaneous gene mutation in one of two genes

— Wide range of congenital problems can result, from heart defects to kidney issues to recurrent ear infections

— Also a wide range of cognitive and intellectual disabilities, from mild learning disabilities to autism-like symptoms

— No known impact on lifespan, although the syndrome has only been described for 34 years

— Research continues into the genes causing Kabuki Syndrome. A recent study by Johns Hopkins researchers in mice with a genetic change similar to Kabuki Syndrome reports that the use of an anticancer drug can “open up” DNA, leading to improved mental function

 

Regina Leader-Post Article, by: Rachel Psutka

Published on: October 15, 2015 | Last Updated: October 15, 2015

Download the Regina Leader-Post article here.

“Freedom”: Patrick’s Story

I was living in an approved home before COR. I had a friend that lived in COR and I started hanging out with him more and more. I stayed for sleepovers and his friends got to know me a little bit. He wanted me to move to COR… I guess he suggested it to somebody!

All my stuff was in boxes and bags It felt good to load it in. It felt like freedom

We had some meetings and then Andrew and Jim showed up one day with a U-Haul truck. All my stuff was in boxes and bags. It felt good to load it in. It felt like freedom. I threw everything in there. I came to the house, unpacked the U-Haul and there were lots of people helping me out. I didn’t sleep that night. It was a new environment for me and it took me a while to fall asleep the first couple of nights. Once I felt more comfortable it started to feel like home. I had things given to me for my apartment. On my birthday I was given things that I basically wanted. It was sort of weird at first. I had birthday parties before, but I never got things that I needed. My friends all bought me a Keurig for Christmas this year!

I’m going to a class that helps me deal with my anger, my anxiety, stuff like that. Some days I don’t really feel the greatest… and some days it could be like… I don’t know its kind of an up & down thing for me. Some days are tougher than others. That’s why I’m going to a class. I know that people in COR aren’t judging me or anything and that they are there to listen not scold you. They are there to help, they don’t say “wow that’s a dumb question to ask”, they just listen and try to help. When I moved in I needed somebody to talk to and I had a friend who would sit and listen, help me out and talk with me. It made me feel more comfortable because I know there is always someone to talk to if I need to. I get to go places like the bar, camping trips, hanging out with my friends. There’s not really a curfew. Your friends treat you like an adult, and if there’s a problem we sort of talk it out and work through it.

My friends helped me find a job. I work at Sasktel right on 1st Avenue and Broad Street, not too far from the COR office. I do lots of different things. I sometimes work in the warehouse, I clean 2701’s and 3801’s, just different modems. I sometimes clean ONT’s. It feels good to have a job. I’m not isolating myself because now I actually have a job where I’m responsible for getting up and getting to work on time. I was sort of nervous when I started. I was nervous to ask questions on my first day, but when I got more comfortable I sort of came out of my shell. When I’m on my own I have a thing called Facetime. My friends Facebook, Facetime, text me to make sure I’m okay and stuff like that.

I really like hanging out with people from COR. Going to BBQ’s, hanging out, playing football, just hanging out. There’s one thing that I have learned from that. I don’t look at their disabilities, I look at them as a person. I go to the dances and I have a friend that has MS, but I don’t look at her as MS. I just look at her as just one of my friends I can hang out with and laugh, do stuff with.

What is cor to you?

[What is COR all about?]

People caring about other people, people who are willing to listen, talk to you and make sure you’re alright. They are basically there for caring. COR has a website with lots of videos. Everyone is welcome here and everyone is equal. You should check it out. COR is an awesome place to live.

 

– Patrick

We All Learn From Each Other

My most memorable time at COR has to be one of my more challenging days. We had just gotten back from a rough time at a softball game. The person I was supporting made a choice and ended up having to deal with some of the repercussions. When we got back home we had a really great heart to heart moment together. We talked and had a moment of learning together about what happened and why. I feel like it’s moments like these that I get up for everyday.

To go through life one step at a time and learn something valuable with every step we take

To go through life one step at a time and learn something valuable with every step we take. COR is an amazing place for everyone to come and learn. It’s not only the people we support that learn, but every person I have spoken to is truly impacted by the people we support in one way or another. We all learn from each other and its alright to make mistakes, as long as we pick ourselves up and are ready to try again.

Matt

COR Support

The Caring Moment

In the beginning we must always be in the moment with two bits of knowledge focused on giving a feeling of being safe and loved. We should avoid lengthy case histories and cleanly typed plans. If need be, do these requirements. However, our task is to be in the moment; it is not to change anyone’s behavior, but to teach the person to feel safe with us and loved by us.

The present is a series of moments that tumble into the future. Yet, we should not worry about the future, only the present moment. The here-and-now becomes the future with each ticking second. Our encounters transpire in the moment and then transform the next moment.

The-joy-is-in-the-moments

Whether a mother, father, grandparent, or a person whom we are supporting, the most important variable is the moment, not the future, not a projected plan with outcomes, not behavioral change. No, it is our being present in this very moment and all the person sees, hears, touches, and feels in this mutual coming together. It is the tiniest amount of time, perhaps two or three seconds. Then, these moments are linked together with other moments and it is these moments that become new moments; it is the evolving chain of moments that creates our moral memory in us as well as a memory in the other person.

Caregiving’s simplification involves teaching caregivers to be in the moment:

  • In bad moments this equates with forgiveness rather than control;
  • In all the good moments this involves a series of accidental and intentional encounters throughout the day focused on safe and loved;
  • The accidental encounters are merely brief moments of passing by and encompass a wave, a wink, a smile, a name, a thumbs up, maybe a hug if there is time, a whispering of “You are so good.”
  • The intentional encounters are a bit more planned and involve a chunk of caregiving time—from a minute or two or a half hour or more. The time depends. It should be structured in the day with the only purpose being to give a memory that the person is safe when with us.
  • The key is to stay in the moment. Joy is found in the moment.

Our task is simple, just being in the moment with the gift of helping the person to feel safe and loved:

  • Not a moment before,
  • Not a moment after,
  • Just in the now.”

-John J. McGee, PhD

Mentoring a Spirit of Gentleness

“Mentoring is a way to help teach others about gentle care giving, to enter into terrifying spaces and teach others to feel safe and loved.” Mentoring is an approach to do this. It is a way to share with others a spirit of gentleness and justice.

A mentors role is to define the empty and sometimes violent spaces that exist between caregivers and marginalized individuals in institutions, shelters, homes, prisons, nursing homes, schools and wherever we happen to serve. These places have to be filled up with the caregivers’ laces of affection–their loving touch, warm words, and kind gazes. Caregivers need to stop and reflect on the formation of companionship and community and the role of helping individuals feel safe, engaged, loved and loving. From this foundation, caregivers can then create communities of caring. Mentoring is a process for teaching caregivers to establish companionship and community.

Mentoring is a way to teach others

Mentoring is an ever-deepening task that calls for the development of trust among caregivers and the formation of a sense of companionship and community. This trust starts by the Mentor entering into the caregivers’ space with a deep sense of humility and justice and helping each caregiver feel safe and respected. It is the informal coming together of the Mentor and caregiver around the kitchen table and the sharing of the meaning of companionship and community. It is working together and finding ways to teach marginalized people these feelings.”

-John McGee

Authenticating Life

Perhaps you are like me and occasionally enjoy looking at at a piece of art. Whether it is the color, systematic brush strokes and blending or perhaps it is the stylistic nature of the painting. To me art speaks volumes. I love admiring, analyzing and relishing in the beauty of the canvas–for some, admiration isn’t enough.

In 1996, Britain “Ripper” (not Jack the Ripper) emerged from the smoke as the world’s greatest art thief. It was soon found out that the ‘Ripper’ had been a local gardener and golf course keeper whose name was Mr. Bellwood. The first time this man was arrested, the police officers stormed his house to find a typical British dwelling; His wife Susan and their daughter were sitting in their living room having a cup of tea. At first the police feared they had the wrong man as Bellwood’s house had the appearance of being a middle-class home; it wasn’t until they began tearing down Mr. Bellwood’s walls that they found hidden away a gallery consisting of nearly 1,000 pieces of world history and art dating back to the 15th and 16th century. For obvious reasons he was arrested; but was released a mere two and a half years later on having good behavior. Since his release Bellwood has continued his thievery, taking into his possession over one-hundred-million pounds worth of history artifacts and art. It is now suggested that Mr. Bellwood has fled from England and is living overseas and working in the art world.

As soon art began to go missing, duplicates began to appear–however they were falsified documents and had to be authenticated. I don’t know about you, but authenticating something doesn’t sound like and easy job: it takes time, meticulous effort and observation.

When something is authenticated it is deemed, true, genuine, and ‘original to design and purpose’. While some people may heartily disagree with me, I suggest that authenticity in our world is an uncommon trait. Just like Mr. Bellwood, we as people so often portray ourselves as something that we are not or because of our historical pasts, feel unable to live authentically; but this is what our world needs! When you wake up in the morning, and leave your house people should be able to look at your life and be astonished by the courage and boldness that you have to live as you are. This doesn’t mean that we don’t learn from each other: in fact I am convinced that a life that stops learning is a life that stops living — similarly if we can’t live authentically before those who encompass our daily lives, I would ask if we are then truly living.

Authenticity flows beyond ourselves and into our family lives, our relationships and into our places of work. For those who choose to strive to live authentically it fosters a community that births life: a safe place where people are challenged, supported and offered an invitation into true relationship. This needs to become our new status quo. As I sign-off for now I leave you with a snippet from John McGee, who encourages us to live authentically before the people we serve: allowing our own story and personality to penetrate our own hearts and the hearts of those we serve.

“Unconditional love has to be expressed in our very being. Our presence has to evoke a peace like a single glimpse of the sun does in the midst of a storm. Our touch, words, and eyes have to be like a gentle breeze that calms the storm of fear and meaninglessness that is always lingering on the horizon. We must be authentic. How we use these has to reflect our own life-story and personality.” – John McGee

Ben Raine,

Director of Culture and Mentorship