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Hands-on approach made a world of difference

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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.”

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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.

Common Situations: Refusal to Participate

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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.

We are challenged to enable participation and establish feelings of solidarity

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.

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

Mentors Cannot Give What They Do Not Have

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“Mentors cannot give what they do not have. Mentors are not about changing anyone’s behaviours; they are about focusing on others feeling safe with them and loved by them. Nothing more and nothing less. When in situations where there might be opportunities to state what they are against, they merely share what they are for.

Mentors do not devalue, put down or condescend; they lift up, respect, and simply share what they might do. They do not forbid or frown upon those actions that they do not like. They must be embedded in daily hands-on experiences with the most marginalized. They find joy in being among the most forsaken; they reach out to the most abandoned. The Mentor’s work is with caregivers in union with the most marginalized.”

-John McGee

Mentors cannot give what they do not have

We Need To Be The Most Loving During The Worst Moments

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“We often see ourselves as better than those whom we serve and express this in talking down to those who are troubled, acting condescendingly, separating ourselves from their lives, and making sure that we are in control instead of dialoguing. Our task as caregivers is companionship and community. Our culture makes it harder because there is an expectation that we must control others by withholding ‘positive attention’ when someone is acting out. Our position is the opposite. We need to be the most loving during the worst moments.”

-John McGee

Our role as caregivers is to provide community and companionship

Defining Empathy

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“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.

Represent-kindness-serenity-and-peace

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

Process of Stretching

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“We teach “safe” by placing almost no demands on the person except for being with the person with a sense of just “being.” It is a tremendously important for one human being to teach another it is good to be near you. Nothing more, nothing less. This act of recognizing the brokenhearted person’s existence and goodness is a most powerful teaching-learning experience. At the same time, we need to engage in nurturing and finding relevant ways to express unconditional love without pressuring the person at all. This might seem weird, but the person will learn to feel safe if we lower our demands while increasing our goodness, kindness, and expression of love. We need to avoid putting the horse before the cart. Doing things is not the primary purpose of care giving; being with one another is.

A dimension that is often hard to understand and deal with involves the emergence of self-centeredness, becoming spoiled, after a time of intense nurturing. It is natural to become self-centered as a result of constant nurturing. This creates another important care giving role. We need to slowly begin to focus on stretching the person away from self-centeredness and toward other-centeredness. This stretching process involves reminding the person that he/she is safe and loved while asking a slight degree more—waiting a moment, taking turns, sharing, and other virtues involving others and our relationships. This process is very delicate so we need to keep reminding the person of how safe and loved he/she is.

The developmental model outlined below is a good guide for us to use to understand the various dimensions of new memories that have to be taught:

• From brokenhearted and lonely, to safe and loved;
• From self-centeredness, to reaching out to others and loving expressing love to them; and,
• From dependence on us, to engagement with us and others.

Doing-things-is-not-the-primary-purpose-of-care-giving-being-with-one-another-is

Our pedagogical process starts with us encountering a brokenhearted person and bringing two simple gifts that we have repeatedly mentioned—the feeling of being safe and loved. We have nothing else to give. These are not a program, a clinical approach, or focused on outcomes. They can, if necessary, be translated into mundane outcomes, but, for the caregiver, they are gifts and these now established feelings need to begin to include being safe with a growing circle of others and becoming a meaningful part of increasing engagement.

This stretching process is a part of normal development. These include learning other moral milestones such as learning to share, a giving up, momentarily, of what is theirs; learning to wait and to take turns; wanting others to feel proud; and, learning when enough is enough—self-control. We all have to learn these milestones. Each requires a grounded stance that assumes that the brokenhearted person has learned to feel safe and loved and is ready for participation in a broader community. After these have been formed in the person’s moral memory, we can then begin focusing on strengthening self-esteem, learning that “I am good!” and self-control, learning when enough is enough!” The person’s world and responsibilities begin to expand.

After an intense dimension involved almost solely with unconditional love, it is natural to enter a phase of self-centeredness. It is then that our role evolves into carefully and delicately stretching the still fragile brokenhearted person from a state of self-centeredness to one of other-centeredness. It is a process in which the person learns that it is good to be with a small circle of others, then it is good to do things with this group, and eventually it is good to do things with a wider circle of friends, and finally it is good to do things for others. This last encompasses a high form of moral maturity.

We also begin to focus on the person’s self-esteem. This milestone emerges when others keep reminding the person, “You are so good!” This begins to occur from the very start when we are teaching that it is good to be together. What happens in this process is that the person begins to feel safe and loved from within. As this occurs, the person begins to see him/herself in a different light and forms a moral memory that says, “I am somebody because my caregivers tell me I am.” As the circle of friends grows, the person’s sense of self-worth also expands and becomes stronger.”

– John J. McGee, PhD

Gentle Teaching International Conference 2015

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Kansas City, USA welcomes the Gentle Teaching community! On September 9-11, 2015, Kansas City will play host to the 2015 international conference. More information can be found at www.gti2015.com.

Gentle Teaching International 2015 Conference

If you want more information about the 2015 Gentle Teaching International Conference find our events page on Facebook by clicking here.

Gentle Teaching Theme for May 2015: Structure

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StructureStructure - 2

Tenderly, Softly and Flexibly Structuring the Day

By: John J. McGee, PhD

Gentle Teaching envisions systemic change, but it starts with just you and me. The inner workings of Gentle Teaching exclude any idea of seeing if Gentle Teaching might “work” on someone. A culture of gentleness is going to be gentle no matter what. It is not primarily a question of working; it is a question of expressing love in all of our interactions. Being kind transcends all other human interactions. It is not something that has to be proven. It is our duty to be gentle. A culture of gentleness also is communal in nature. We cannot treat one person kindly and then treat another person in a mean manner. We cannot embrace one person and then yell at another one. We cannot reach out lovingly to one person and then grab and take down another one. We cannot express love to one and then punish another.

We have to carve out a structure in the midst of chaos and within the dark cloud of heavy, damaging memories. We have to find ways to enter into this chaos almost without being noticed with the simple idea of being near the person with, at least, a slight hint of being with the person. There are no fixed tricks or recipes to do this. We need to formulate opportunities to present these gifts of feeling safe and loved. What the individual caregiver or the caring community needs to do is fit their interactions to the needs of the person in any given moment within a culture of gentleness and initially our first moments can be extremely fragile:

  • We have to understand that our mere presence can be frightening and burdensome since it is often the case that the marginalized person simply sees us as just another caretaker who will be mean, devaluing, and bossy. Because the person might feel under attack, we have to enter into the person’s space slowly, quietly, and peacefully. We should avoid almost any demand and simply want to be as near as we can. In a way, we have to enter this frightened space like the most gentle and warmest breeze. We do not have to do anything else and we might whisper that we are not going to do anything but be near. As caregviers, we have to understand the initial fear that simply being near a brokenhearted person provokes. We are initially in a world in which we want to bring joy, but the person can only see us as mean and cruel like all the past caretakers. So, our first steps need to be tiny, soft, and non-demanding. We have to be acutely aware of any sign of fear such as increasingly labored breathing, the smallest of flinches, pulling away, and a cold gaze. These signs and others can be the body’s way of screaming to us “Do not pressure me or make me do anything. Just be near me without pushing yourself on me.”
  • Our mere presence should be marked by a sense of profound peace and humility. We can be the most loving and gentle caregivers in the world, but the alienated person will see us as mean and cruel like everyone else in their memory. The person can often see a gentle caregiver as just another guard-like caretaker who will boss everyone around, be pushy, insist that the person do something, and treat brokenhearted persons as mere objects. Even though that perception might be the farthest from our mind, we are swept into these memories and we need to realize that the person sees us as an amalgamation of past caretakers.
  • The initial expectation is to quietly find a way to be near the individual. Our initial purpose is simply to be near the person and then to be with the person. The key word is “with” the person. This might seem to be a very insignificant purpose, but for a brokenhearted person it is a major breakthrough. For those who are suffering, just being with them is a major first care-giving purpose. As the person then gets the feeling that the caregiver is not going to do harm or be bossy, the caregiver then might look for a way to further quietly enter into the person’s terrified space. This could happen almost immediately or it might take a long time. The slower we go, the faster we will get there. The more peaceful and we are, the less terrified the person will be and the less demanding . In a sense we need to enter the person’s space with low expectations but the highest hope.
  • As the goodness of our mere presence takes root, we can then perhaps move closer, maybe touch the person’s shoulder, smile warmly, look into the person’s eyes lovingly, and try to create a cycle of this “approach.” Our voice and manner should be soft, tender, non-demanding, and calming. We need to see the person from the very first moment as our brother or sister who is suffering and scared. So, as we approach the person, we must see someone whom we love. This takes a tremendous amount of moral imagination on our part. It helps us to “see” the person’s sorrow and the possibility of joy. The first approaches might involve just being near the person. But, as time unfolds, we will find ways to slowly enter into this fearful space more closely perhaps with a smile, a whispered phrase, or a light touch.
  • This initial approach, almost presenting our self invisibly, is the first structure that eventually unfolds into various dimensions such as increased participation, seeking our caregivers, sharing, and participating in the caring community. As we enter more and more into the person’s space, we then look for non-intrusive and non-demanding ways to be with the person for longer periods of time. These interactions might be simple, but vital, such as talking about the person’s goodness, reaching a hand out, and doing something together.
  • If there is a focus on doing anything, it should be doing an activity or chore with the person or even for the person. The focus must always be on the person’s goodness, not an activity.