COR was featured in the October/November 2015 issue of the Saskatchewan Business Magazine. Read the article below:
In everyone’s life there are those moments or experiences that capture your full attention and enchant your heart. In my life I have had a handful of these experiences: including lying in a rain storm emotionally broken to which when the rain stopped craziest Northern lights began dancing across the skies, my first date with Larissa my beautiful wife and the days that both my children were born. If you took the time, sat back and reflected on your life I too believe that you would pinpoint experiences that spurred a major reaction within you which kick-started a wave of changes: either big or small. As I sit in this opened aired mall, with people hustling and bustling around with only two weeks before Christmas, I confidently can say that Creative Options Regina (COR) has been added to my life experiences that have provoked change.
Nearly three years ago I took a position with Creative Options Regina after a friend and fellow wait-staff told me about her new position with “this super awesome organization!” The words that flowed from her mouth were captivating and got me excited! Not wanting to sound like a stalked, I hesitantly approached her and asked if she would be ok if I applied with this new-found organization. With a resounding “YES!” I applied. in the following months, I quit my job as a waiter and engaged in full time support hours with COR. I don’t know if I ever really thanked this person allowed: so now is the time! Thank-you Brittany Bechard for your wisdom in knowing a little about my heart, ‘seeing something in me,’ and encouraging me to apply. You are an incredible woman and those who you serve and support have a better quality of life because of you. When I first started supporting with COR I served Jesse, Jasen and Shaun. These men are incredible and taught me a lot about myself. Jesse’s determination to do everything in a day, Jasen’s love of authentic relationship and Shaun’s ability to be the slowest eater in the world taught me to embrace the small things, laugh, and rest in the fact that in those moments together nothing else needed to consume me: we were, and that was more than enough. A few short months after starting my journey with COR I was asked if I would consider moving teams to support a young man named Michael. Little did I know that this man would reveal my true colors, challenge me to be a better me, and become not only a friend but a brother.
My journey with this man was not always easy. Sometimes it was hard. Perhaps it is just me, but I think it is the hard things in life that are worth fighting for. My journey with Michael led me to new heights, literally. In the summer of 2014 we were able to strike out on new adventures together, including a handful of roads trips and an airplane ride around the Regina city limits. Michael, and others in COR have become an intricate part of our family: coming over for meals, playing with our kids and engaging in this “thing” we call life. My words can’t express the joy and appreciation I have for each of the people who have come into my life during this time of my life.
Though the people that I have been led to serve have impacted me tremendously: I have been equally left effected by those who I am blessed to call friends and coworkers. From the leadership of the management team, to the bravery of team leaders, to the humility of support people, you have sparked change in my life: Whether it is Jenna walking into my office to “just talk about life”, or going out for a drink with Ryan, Reid, Murray or Bart to talk about the philosophical structures of Gentle Teaching, I have been challenged and changed: Thank-you.
Perhaps this is why it is so difficult to write this blog: the relationships we have built matter! It is with a mixing pot of emotions that I write to tell you that as a family we have decided to resign from my position as Director of Culture and Mentorship and relocate. Our decision was one that was not taken lightly, or easily made. Every square inch of the effect of our decision was scrutinized and processed: to the point of believing that I needed a heart transplant. It is with great sadness that we let everyone know that as of January 15th, 2016 we will no longer be serving at Creative Options Regina. This decision had little to do with COR and more with my own physical health, the health of our family and an opportunity that we believe will lead us to help spark change elsewhere in Saskatchewan.
As we prepare to leave there are a lot of details that we are hoping and praying will fall into place. But I am fighting hard to finish well. I believe that whatever my hand finds to do I have a role and a responsibility in helping it come to fruition: to pursue the best outcome possible. In the coming weeks, I will be focusing a lot of my time to the curriculum that I have been developing over the past year, along with finding moments to say those proper goodbyes.
If I may: and I will! I would like to leave you with a message of encouragement. It has often been said that Gentle Teaching carries a lot of power. While I don’t disagree with this completely, I believe that it can be refined all the more. Gentle Teaching equips people with the skills and tools to have a voice of influence, which in return equips you with a “power”. Now don’t misunderstand me: I am not suggesting that you are to have power OVER someone. Rather, you, yes YOU, have the ability to be a powerful influence. The way in which you choose to interact with someone, and the words that you use can and will change a person’s life. So I beg you: be kind, speak with wisdom, pursue good, love the lonely, hurting and brokenhearted, know that your purpose on this earth goes beyond the material things that we we can collect for ourselves. The relationships in which you currently find yourself (whether long-lasting or temporary) are the most meaningful. As you go through out your daily life, with friends, loved ones and team members, remember your tools. Your mouth is to speak kind words, uplifting others. When your hand is forced to address difficult situations remember that your words carry a powerful punch and even in the midst of addressing conflict or correction can become vessels of empowerment for those you are speaking to. Your hands are to be agents of care: assisting the homeless, uplifting the broken, encouraging the fearful yet doing all of this together. Your presence should display the message of your intent: I am here with you, through thick and thin. As I often have said my training’s, “we are in this together, because WE, well we are the dream team and nothing can stop us!” And finally use your eyes to empathize, sympathize and see the true story of peoples lives. Our eyes should not just be used for the present, but be used for the future. Dream big dreams for both yourself and the person you are serving. Work hard not to become entrapped in what you see now, but dream about tomorrow. The people you serve deserve it, and so do you!
From my family to you: we thank-you for the impact that you have had in our lives.
With all of my heart and deepest gratitude,
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
Published on: October 15, 2015 | Last Updated: October 15, 2015
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!
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 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.
Common Situations: Refusal to Participate
If the person refuses to participate,
• Make sure there is a structured flow to the day, not just the emptiness of custodial care.
• Be aware of other caregivers who might be coaxing, cajoling, or bribing the person to participate.
• Bring about minimal participation by doing activities with the person.
• Continue to dialogue.
• Emphasize valuing and elicit it during any movement toward the slightest participation.
The major challenge in this situation is to make valuing occur, even in settings that contradict it. Many caregivers work in almost hopeless situations: institutions where the mentally ill are herded like animals, nursing homes where the aged are left to fade away, homeless shelters where the poor are warehoused for an evening. Although we need to fight for social justice and establish decent places for people to live, work and play, many caregivers still need to create hope and feelings of companionship where there is none. Thus, if we work alone in a setting that seems to be the antithesis of valuing and engagement, we have a special and difficult role: to bring hope where only despair reigns.
We will often be ridiculed for our idealism and seeming naiveté. Yet we can express valuing and create feelings of companionship even in the midst of hopelessness. Our interactions are what matters. If the person in the most forsaken institutional ward runs from us and falls to the floor, we can keep on teaching the meaning of human engagement. If the person lashes out, spits, or screams at us, we can move toward him or her and continue to bring about engagement and give unconditional valuing. We are challenged to enable participation and establish feelings of solidarity regardless of the hellish reality in which we find those who are marginalized.
-John J. McGee, PhD
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. 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.
We need to rethink how we define “community”. People will say things like, “lets go out into the community”, when in fact we’re already IN community. We all make up the community; just being you makes you a part of it! Embrace what’s around you!
“Our experiences with Gentle Teaching have taught us that change needs to start with us–our warmth, tolerance and the translation of values into relationships based on companionship. Our interactions need to reflect warm caring and a spirit of oneness in spite of even intense rejection or rebellion. They need to begin to signal feelings of empathy and the understanding that the relationship will evolve into an authentic friendship even though initially it is quite lop-sided.
Our interactions need to centre themselves on love the person with unconditional respect during the best moments and the most difficult ones. We have to care about the other and express the feeling that we are with and for the person. Spit can be running down our face or slaps stinging on our arms, but we need to unconditionally value the other. We are asked to transmit this feeling through dialogue and sharing our life experiences with the other. Our task is to initiate this process in a spirit of human solidarity.
Warmth can be felt in the tone of our voice, the sincerity of our gaze, and the serenity of our movements.
Tolerance is conveyed through patience in the face of aggression, respect in the face of rejection, and perseverance in the face of entrenched rebellion. Our values are the impetus within this process, and they need to be constantly questioned and deepened. It is this spirit that we have learned in our gentle teaching experiences–to break away from emotional homelessness, to rupture the cold grip of loneliness, and to center ourselves on unconditional love.
The challenge is not to find non-aversive behavioural techniques, but to formulate and put into practise a psychology of interdependence that goes against the grain of modifying the other and asks for mutual change. This presents a major challenge to parents, professionals, and advocates. It requires an awakening of our values and putting them into practice in the most difficult situations.”
IN PRODUCTION–I’ve often wondered why are stories about superheroes so appealing? And why have they always been appealing throughout humankind’s history? (Recall the Roman and Greek gods and goddesses, and countless other myths of people with superhuman strength and power from all cultures throughout the world from all time.) If I was to give a less than educated guess as to their appeal, I would say that they touch something in us that we all long for…perhaps something missing from our very selves.
The reason I think this is because it seems too trite and easy to say that the appeal lies only in the fantastical. As if to say, just because those stories tell us of something that we do not see in real life they keep our attention. I can imagine a story with many fantastical details that would not make me rush to see the movie or buy the book. That is to say, fantastical does not always equal appealing.
So perhaps superheroes’ appeal lies in the fact that they are marked as special, set apart, different, but in a good way–a way that increases their human potential. I believe that is a better explanation of their universal appeal. I believe it appeals to us because we very rarely experience it ourselves.
If this lack is a common existential experience, what does that tell us about our ontological make-up? Why would we all universally experience the same lack or same desire? Were we meant for something greater? Did we, as a race, have a potential that we lost? Or do we intrinsically have it but lost our ability to see it clearly? Why the common yearning and desire?
And then, why do we feel a lack that we seemingly lack the ability to fill? Even recognizing that one desires to be “more” does not enable one to meet their own desire. Even the richest and most powerful people in the world often report that they feel this same lack in life, like something is still missing.
Perhaps finding out what really quenches that desire or fills that lack is the meaning of life.
1) Decide what you want to accomplish
Is there a specific task/dream that you want to accomplish for someone or with someone?
2) Pick a theme song
Don’t take yourself too seriously! Let loose and have fun
3) Decide what you stand for
What are you fighting for?
“Empathy is not pity.”
“It is a feeling of being-one-with-the-other. It is trying to understand and sense why a child or adult is acting in a particular way and reflecting on the cumulative impact of each persons life history–years of segregation, submission, and isolation that gnaw away at the spirit. It is a spirit of sharing our common humanity, and the belief that no one exists as a mere individual but that we all exist interdependently…Empathy does not mean over-protection. It comes from our knowledge of the other and ourselves, our reality, our vulnerabilities, and our strengths and weaknesses. It is caring about the others anger, frustrations and rejection instead of whether the other is obeying or producing.
We need to represent kindness, serenity and peace. It involves recognition of the personal and social dimensions of what it means to be handicapped, mentally ill, poor or abandoned. It remains steadfast during the good times and bad, at the depths of fury and the heights of joy. Nobody is only a student, a client, a resident, homeless, poor, or powerless. Empathy drives us to uncover the human condition and reveal its fullness, our fragility in the face of life’s vicissitudes, or vulnerability to emotional disruption, and our need for being-with others. We need to consider that we are but one short from homelessness ourselves.”
-John J. McGee