A Conversation with a COR Support…

Describe a place or time where Gentle Teaching has helped you in your personal life.

This hits home to me! I am so blessed to be a part of COR; I have grown so much both within this organization and outside it. I truly saw myself becoming a better person and becoming a role model at home, at school, and at work every day. Gentle Teaching has definitely allowed me to learn more about myself!

I truly saw myself becoming a better person and becoming a role model at home, at school, and at work every day. Gentle Teaching has definitely allowed me to learn more about myself

Tell us about a bond that you or someone close to you shares with someone you support.

I have bonded well with all the individuals I support. When I come to their home for a support time, I feel as though I am invited to be there. Every time I walk into their house, I feel that I am coming home to my family or that I am coming into a house of close friends. I am grateful for the opportunity that COR has provided me to develop the relationships that I currently hold with every individual that I support.

 

Discuss a scenario where someone you support taught you something.

Recently, one of the individuals I support decided to manage his paycheck and put the money toward future plans and paying his bills. This was a rare occasion because in the past, his paycheck would be gone within a day or two from social outings alone. It was the first time that I had witnessed him making a plan with his paycheck and his willingness to learn to budget his money was amazing. From that moment, he unknowingly taught me that you can always grow and become a better person! It was a humbling experience to be able to see a 31-year-old man literally grow in front of your eyes. He has grown so much since I met him and I can truly say that I’ve watched him grow each day. It’s unbelievable!

It’s amazing to see that the individuals that I support are so passionate about so many things

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

Like I mentioned earlier, using the Gentle Teaching approach to supporting individuals has allowed me to become a better person than I had ever imagined. My Mom has mentioned to me a couple times where she sees the growth in me and she was proud of how far I have come. My parents were worried about me when I was in grade 9 and 10 because I had the attitude and the personality of someone who was not capable of success. So for them to be able to witness my character grow so much, it’s a sigh of relief for them for sure.

 

Describe how you have been able to share one (or some) of your passions with the individuals we serve.

First off, it’s amazing to see that the individuals that I support are so passionate about so many things. Being able to share my passions with the individuals have definitely helped with the friendship that has developed. For example, one of the men and I share a passion for hockey. I know that whenever he is having a rough day, I can always bring up hockey topics and news and we can have a long-lasting conversation about it. There was a moment where he and I were at a Pats game and I remember thinking that our relationship had come a long way since we met. The Pats scored a goal, I looked over and he had a huge smile on his face and he ‘fist pumped’ full of excitement. He never does this! This truly was a special moment. It touched my heart to see how joyful he was to be experiencing the Pats playoff run with me.

 

Jason, COR Support

 

I try to create a culture or atmosphere where the idea of support doesn’t exist.

I am creating a culture of gentleness with the woman I support slowly. Gaining trust between each other was, and still is, difficult not only for her to trust me, but also for me to trust her. Something that I think that is unique that I have done is to never treat her differently than I would treat anyone else I care about. I talk to her like she is no different! For lack of better terms, I’m not afraid to be myself. I have created a relationship with her where I can treat her like a friend. This is because I like to help people. It’s in my nature to try to make people happy. I slowly but surely developed genuine care for her.

By creating a comfortable environment and creating that comfortability you can then slowly begin to stretch that zone, and shape it to a bigger and broader comfort zone and I believe that, that is a key to growth. I also think that gentle teaching is growth. I believe in walking beside someone, and holding their hand. Not following behind them and allowing them to go where ever they wish, as that can sometimes be harmful to people unknowing or unaware of their true desires or what it is that truly makes them happy. Also not walking in front and forcing or pulling in a direction that may not be fully desired. Together and side by side you can guide, not force or follow but guide. I try to guide the woman I support. I try to allow her to be her 41 year old self, whose loving and caring and a truly genuine good person and guide that to create more of her wonderful growth. I think walking in front of her would not be as beneficial if any benefit. Walking behind her would also not benefit, because everyone who has ever lived on earth needed or needs a hand every now and then.

I try to create a culture or atmosphere where the idea of support doesn't exist

I try to create a culture or atmosphere where the idea of support doesn’t exist. I think that when activities are changed, and adapted to minimize or remove limitations and the focus is on abilities and effort than disability no longer exists. I want her to feel free. It should always feel like friends are over for her, and for us it should never feel like a job. Although it is a job and we do have duties I try always to implement a lesson in what we do so that when we’re done she has not only had a great experience with her friends, but also gained a lesson and learnt something that will allow her to grow which is our goal. Being with her is very important. Even when she is feeling down or sad, and may not want to talk.

Presence is how I show her I care. That no matter what, I’m still here and I got your back. I allow her to run her house as if it is her own, because it is her space and she should feel that she has control over it because in turn that allows her comfort levels to raise. Every person deserves the right to feel comfortable in their space of living. In the space they call home.

Sometimes it’s hard for me to do what I need to do. Helping create, and doing what I can to maintain a culture of gentleness with the woman I support has overflowed into my own life. I can say that this job has changed my life. I hope that I can return that favour within the organization and within my own life and the woman I support, whom I’m blessed to have had the opportunity to meet, and lucky enough to continue to spend time with.

 

Jeff, 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

 

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

Canada-Saskatchewan Job Grants: Almost Too Good To Be True

COR was featured in the October/November 2015 issue of the Saskatchewan Business Magazine. Read the article below:

Canada-Saskatchewan Job Grant

Canada-Saskatchewan Job Grant

Canada-Saskatchewan Job Grant

Canada-Saskatchewan Job Grant

Canada-Saskatchewan Job Grant

Canada-Saskatchewan Job Grant

Canada-Saskatchewan Job Grant

Canada-Saskatchewan Job Grant

Onward and Upwards…

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.

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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.

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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,

Ben Raine

 

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.”

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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

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