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Gentle Teaching has transformed the person I am today; I see differently; I speak differently; I touch differently; I vibe differently.

How has Gentle Teaching transformed the person you are or aspire to be?

For the first time in my life, I am employed by a company that has the same philosophies as me and provides countless opportunities and encouragement to dive deeper into an exciting journey of self exploration and self development. I will be forever appreciative for this experience.

Gentle Teaching has transformed the person I am today; I see differently; I speak differently; I touch differently; I vibe differently. I now understand how paramount things like safety, love, and engagement are in maintaining my current relationships and also building new, healthy, empowering relationships.

Gentle Teaching has also transformed the hundreds of interactions I have each and every single day, whether that be with my family members, partners, friends, i-see-differently-i-speak-differently-i-touch-differently-i-vibe-differentlystrangers, or my pets. For example, I am constantly practicing Gentle Teaching with my fur-babies: two beagles. Beagles are stubborn, messy, loud, and stinky … but they also give the best cuddles, are the source of many laughs, and love me unconditionally. Sometimes, when they are not getting the proper attention and engagement that they need, they eat everything (literally everything – the bed frame has large chunk missing and the phone jack has been eaten off the wall), they puke on the new couch, howl at my neighbours, and are incredibly stubborn to train. Despite all of this chaos they cause in my life, I find it so easy to love them unconditionally. I no longer raise my voice or punish them when they do wrong. I only use touch and words in a positive way. However, sometimes when I feel like I cannot properly practice Gentle Teaching with my dogs and need time to myself, the pups visit Gramma and Grampa; this allows me time to recharge and recover so I can give them the best care I can. Gentle teaching has strengthened my relationship with my pets which is transferable to every other relationship in my life.

Despite all of the changes I’ve made so far, I’m not perfect. While I try my best to practice what I preach, sometimes I slip up. Honestly, I still aspire to be a more patient person. At the beginning of my Gentle Teaching journey, I often lost my patience on insignificant things; bad drivers, needy dogs, demanding partners. I feel like along my gentle teaching training was also a lesson in patience. I now know that the person is more important than the task at hand. It also taught me that, in disagreements, I no longer need to have the last word. Also, sometimes people have bad days and I do not need to take it personally. Hopefully, the relationship I have with that person was built on such a strong foundation that they can offer me the same compassion and understanding that I would offer to them when they need it most. I am also doing my best to love people unconditionally and aspire to have a positive journey to love without conditions and BE loved without conditions.

I have only been practicing Gentle Teaching for about a year. Now that I have a taste of this philosophy, I want to continue to change. I want to know more. I want others to learn the benefits of gentle teaching. I want to lead by example. I want to make a difference.

 

Diandra, COR Support

 

To truly promote a culture of gentleness one must apply it to all relationships in their life.

The nature of  the job at Creative Options Regina inspires  its employees to “take their work home with them”. It is my view that an ideal support at COR nourishes a culture of gentleness  in all facets of their life, not just when they’re on the clock at COR. Personally, I maintain a culture of gentleness in my life by applying gentle teaching principles to everyday relationships, and by persistent self development.

I firmly believe that gentle teaching is a mindset that one sees the world through. Although I feel that the pillars of gentle teaching are innate to me, there are always ways to improve and broaden ones understanding. Reading books about neuro-science and psychology has given me a much better understanding of myself, and hence others around me. I’ve learnt that you cannot truly understand others if you do not know yourself. The nature of my degree at the U of R has also contributed to my self growth at COR. The main objective of the inclusive education classes that I have taken is to provide people with intellectual disabilities the means  they need to succeed; many of these skills transfer over to my work at COR. Lastly, and most importantly, to improve my ability to create a culture of gentleness, I work on myself through introspection. For me it is as simple as writing thoughts, new knowledge, and questions down in a journal. This allows me to organize my thoughts and be able to focus on what is important when I am supporting.

As I mentioned above, to truly promote a culture of gentleness one must apply it to all relationships in their life. Naturally I apply what I have learned from gentle teaching trainings in my everyday interactions with the man I support, however, I am proud to say that I take my work home with me. I have used GT techniques to navigate my way through my relationships with family and friends. My relationship with my loved ones is one specific example where GT techniques have dramatically impacted my life. This way of life has enabled me to help a loved one through depression at a time when I was at a loss for what to do. I went from being just another person in their life, to being their mentor.

Personally I maintain a culture of gentleness in my life by applying gentle teaching

Upon doing my internship last fall at a community school, I quickly realized that the school setting was also a place where gentle teaching has great value. Being a community school, many of the students attending came from “rough homes”. My knowledge from COR enabled me to form meaningful relationships with my students. They were excited to come to school, and so was I. Being at school was home for many of the kids that I taught; I was the only stable adult in their lives. Were it not for gentle teaching I likely would have just been “another adult” to these students and squandered the opportunity to be a positive influence in their lives. Yet, with gentle teaching, I found I was being my candid self in front of the class, staying after school on my time to talk with the kids, and attending their events that they were passionate about such as sports, band and drama. I was completely invested in their lives.

The last facet of my life (and where it all started) where I promote a culture of gentleness is my relationship with the man I support. I often wonder whether he promotes a culture of gentleness in my life or I do his. Either way, I love the guy to death. He has been in my life for two years and he has become a brother to me. I’ve seen our relationship evolve from an awkward “get to know you” stage, to now, where we crack jokes and laugh our butts off. I feel like I can do and say anything at this point in the game with him. I trust him wholeheartedly and that trust is reciprocated. When he is upset I tackle his problems head on, I want him to be bigger than his fears and anxieties. I push him to be the best person that he can be. In any situation the end choice is always his; but you can bet that I’m challenging him improve the whole time. His growth in the past two years is astounding, it has been an absolute joy to watch him progress from one milestone to the next. In his life I switch between the roles of being his friend, family member, and motivator; it is a responsibility that I do not take lightly. My role in his life is ever changing as he becomes more independent, I promote a culture of gentleness in his life by actively listening and evaluating him, thereby providing the most effective support that he needs to succeed.

Creating and maintaining a culture of gentleness strictly within the individual I serve is a flawed mentality. To truly be an agent of gentleness one has to apply it to every area of their life. In doing this, I have found that each circle in my life feeds off of one another. Instead of feeling drained after a day with the students, I feel energetic and fulfilled, ready to support, and vice versa. At this point in my life I know one thing to be wholly true: My career will revolve around being in the “people business”. Gentle Teaching has proven to be a significant influence on me throughout day to day life in the early stages of my career. Without it I cannot say that I would be enjoying the successes that I am experiencing today.

 

Matt, COR Support

 

Who am I to come into this person’s home with demands and unrealistic expectations?

I consistently strive to build and maintain a culture of gentleness among the individuals I support and spend time with. When I am in someone’s home I try to put myself in their shoes. Who am I to come into this person’s home with demands and unrealistic expectations? Trying to be mindful of what I say/how I say it and how I present myself to the person receiving support is always at the forefront of my thoughts. By using the four tools (presence, eyes, hands, and words) positively, I continually try to build on the relationships I share with the individuals I serve.

I continually try to build on the relationships I share with the individuals I serve

Ensuring that person feels safe where they are and who they’re with is an important first step. Afterwards is the point at which the person can begin to be stretched and grow. Remembering that the relationship I have with the person I’m supporting is one of interdependence, allows me to teach as well as learn. This is an attitude that I attempt to maintain both within COR with the individuals being supported as well as in my other social circles.

 

Jordan, COR Support

 

Characteristics of a Caregiver

“To be a caregiver involves more than caring: it is to enter into a mutual change process with the person, with both becoming more, instead of less — the parent embracing the crying child instead of yelling; the teacher befriending a lonely child instead of punishing; the psychiatric nurse sitting with the confused and belligerent patient instead of opening the heavy seclusion room door; the social worker creating circles of friends around the homeless person instead of simply dishing out soup; the relief worker entering into the world of the political refugee and seeing the suffering heart instead of seeing only a number. Indeed, our intent has to be to change ourselves, deepen our love, increase our warmth, and recognize the wholeness and goodness of the other. We might never “change” the other. Our purpose has to be to change ourselves. Our hope is that our deepening love will also change the other.”

-John McGee

Our purpose has to be to change ourselves

Who The Other Is: Human Vulnerabilities and Gifts

Who the other is: HUMAN VULNERABILITIES AND GIFTS

Caregivers have to be very tuned into the life-story of the person and the significance and impact of inner vulnerabilities; we must also be astute at seeing or even sensing the life-giving gifts of each person such as forgiveness, curiosity, hope, and the slightest hints of a hunger to connect with others.

Vulnerabilities can be caused by a sorrowful, often undefined, vague, but morally defining, memories of years of segregation, loneliness, scorn, institutionalization, racism, sexual abuse, societal prejudice, illiteracy, poverty, imprisonment, neglect, war, dictatorship, torture, the loss of family members, political isolation, and poor health care. These experiences and often vague and ill-defined memories can be worsened by our lack of attunement or empathy for these conditions, ignoring their long-term effects, or taking a “lift yourself up by your bootstraps” attitude. Internal vulnerabilities can come from psychiatric conditions such as schizophrenia, manic-depression, depression or the often condescendingly cited “borderline” personality.  Caregivers frequently fail to recognize or understand the hidden power of past memories and the end result is comments such as knowing better, being manipulative, or attention seeking.

They can be made more difficult by physical disabilities such as seizures, sensory disorders, or the side effects of medications. The presence of developmental disabilities can make it more difficult for the person to defend self and reach out to others.

Each person is a unique expression of the human condition

Our human strengths and weaknesses are shared with those whom we serve. Each person is a unique expression of the human condition. Some are more troubled or burdened than others, but we all share the common thread of humanity. Within this fragile thread lie the values that bind us together. In our own personal lives, these vulnerabilities can arise at any time and threaten our well-being.

The question is to what degree does any individual need support when threatened by these and other forces. We need to recognize each person’s vulnerabilities and find ways to reach out to those who are more threatened. They are more than persons with vulnerabilities, mental illness, or behavior problems. They are full human beings with a range of gifts and vulnerabilities, a deep inner life that beseeches and long ago our attention, and longings that call for fulfillment.

While recognizing the need for teaching functional skills, our central caregiving role must focus on teaching each person to feel safe with us and loved by us. Although professional measurement tools to define the degree or absence of functional behaviors can play a useful secondary role in care giving, if the central developmental milestone of feeling safe and loved is not achieved, then any further discussion can be fairly shallow. If the center of the human condition has not been achieved or has been broken, the rest of learning is merely peripheral. If we can help form the center, skills will blossom. The assessment of our companion or becoming-companion is based on the assumption that we must focus on the center and then the periphery will take care of itself.

John J. McGee

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.

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

Psychology of Interdependence

“Regardless of the type of aggression, self-injury or withdrawal, we assume that a hunger for being-with-others rests in the human spirit, longs to be fulfilled, and , in many instances, needs to be uncovered. We struggle to uncover and fulfill this need in ourselves and others. We are often pushed by the fear of giving ourselves to others and pulled by the hope that such feeling give rise to. Our fear can lead us to lord over others in order to gain a false sense of power. But, the more we question our values, our hope can lead us to feelings of companionship. This pushing and pulling leaves us in a quandary–to reach out toward others or to preside over them. The desire to affirm the other is often buried in us by years of training that have taught us that independence is the central goal of life, and, for those who are on the fringes of community, compliance is the pathway to success.

Yet, self-reliance and blind obedience are lonely conditions that lock us and others out of the embrace of human warmth and affection. Those who are committed to care giving often do not recognize this struggle within themselves, let alone in the marginalized people whom they serve, So the first place to start in the psychology of interdependence is with ourselves, our values, and how we translate these into reality.”

John McGee