In a recent 'purge' in the basement, I found a copy of a 'Reflection Paper' that I'd written in 2008, when I was taking Red River College's Disability and Community Support program, to further my career in the world of working with adults with disabilities. Much of this blog is about our experience presenting, memories of Shane, tools and ideas for families of individuals with disabilities. But somehow, this paper is one that I'd like to share here, when we end up being lax in appreciating what those that find it hard to find their voice go through in different situations. Situations that are likely to cause 'behaviors' that lead to all those things that typical adults like you and I would never, ever have to endure.....med changes, loss of privilege, changes to plans. But somehow, without a proper understanding, we feel it's okay to do that to other adults, simply because they are labeled with a disability. Here was my recount of a near 'behavior' I had and a good reminder that I hope everyone who reads this will grow from!
Clarion Clarity
In the big scheme of things, all in all...I've led a pretty charmed life. How could I not? I was fortunate to be born a white Anglo-Saxon protestant woman in one of the freest, most liberal countries in the world. I've been given a reasonable, measurable level of intelligence, a strong supportive family and a solid sense of self. I've existed in a world where I've known freed of choice, freedom of speech, freedom from persecution. It's been a very good life.
That is not to say it's been a life without challenges. There have been no end of them along the way. There was the challenge of experiencing a level of exclusion and bullying when I was a chubby, six year old child starting school in a community where I knew no one, and no on knew me: of being trapped in a bad relationship with an abusive partner in me teens and twenties and finding my way back to myself when it was over; of losing my first husband to cancer when both of us were too young. And of course there was what might have been the biggest challenged: coming to terms with my son's disability and the change in direction that life had to take as a result.
But through each challenge, I've also been graced through having my health, my family and my friends. Three things that I've always believed are key to surviving whatever life throws your way. Having that, each challenge has not only been survived, but has allowed me to grow and learn, rather than wither and fade. To not only survive but to thrive! I've had the opportunity to learn that time does heal, bad memories do fade and life does go on even if it is in a much different direction that the original plan had been laid out to go. All of it made me who I am.
I believe it is the challenges and struggles that have eventually led me to be the person I am and do much of the work that I do. They have given me a unique perspective on many things and a different vantage point from which to look for answers and solutions to the challenges that the people I support today find themselves contending with. To better support the supporters of the people who struggle with 'difficult behaviors' I have spent hours attending workshops and exploring websites of people like Michael Kendrick and David Pytoniak, hoping to learn from the ones that have worked so hard to figure it out before me. I've tried mentally to put myself in the shoes of some of the people I support as I've talked the talk and shared what I've learned.
One of those people is a lady is a lady i'm going to refer to as Alice to ensure her confidentiality is protected. Alice is a woman about my own age who lives on her own in a small city in Manitoba. But where my life story has been one of hope, support and relationships, hers has been one of pain, disappointment and heartaches. Alice has a developmental disability and struggles with communicating in a way that most of us are able to understand. When we are unable to do so, Alice resorts to behaviors that she knows wil get our attention in an effort to make her perspective known. Sadly, people come and go from her life at an alarming rate, as is so often the case for people who experience disabilities. No sooner does a staff person learn to understand her wants, needs and desires they move on and are gone. The knowledge gained going with them. Then Alice must start over once again, with another stranger and the cycle continues.
Having now been part of her life in my paid capacity for several years, there are certain things that I've come to know about Alice. Like all of us, she wants choice in her life, especially when it comes to who supports her. She likes men, but doesn't want them as support staff. She wants to know who's going to be there ahead of time and she doesn't like surprises. When any of those things do not happen for her, there is a very strong likelihood that Alice will have a 'behavior'. Unfortunately for her, sometimes the people who have a large amount of control over her life neglect to respect those things that she has made known and don't listen to the people that know her story. So behaviors happen, triggering more change in support, in medication and in her life. I have always felt that I had a pretty good understanding of her and what she experiences. I've certainly always been able to talk the talk about it, but on August 22, 2008, I found myself in a situation where I had the opportunity to walk the walk and that day my understanding deepened.
So I need to backtrack just a little here. In 2004, at the age of 44, I discovered pedicures! Since that time it's a luxury afford myself and is a big part of my self-care routine. I'm not ashamed to say...I love my toe-nails! Laugh at me if you will,but they really have become a part of my identity...of who I am. I always contend that it doesn't matter how hard or crappy the day might have been, at the end of it I can stretch out on my couch, put up my feed and say to myself "At least I have great toes...just look at them!" Many will find that silly, they haven't walked my road. Some day's it's something that small that gets me through to the next day.
What is important to this story is that I don't just have any ordinary toenails, I have 'Cindy-Toenails' and that makes all the difference! For years I have been loyal to a wonderful young woman who does pedicures at the Clarion. She does the most amazing art and can meet any particular whim I might have about what I need on my nails. She's an incredible artist and can meet my whim be it flowers, palm trees, snowflakes or musical notes. I love my Cindy! Half of the fun is seeing what she'll come up with each time, but the other part of it is the relationship we've developed over time. She knows me, my story, my people, my likes and dislikes (she knows not to offer pink...I'm a purple girl)...and she knows this is 'my time' being spent being pampered before I go back to my life as 24/7 caregiver.is a big part of my keeping my sanity. I book our appointments weeks in advance, I arrange my schedule around when she's available, arrange respite and child-care for my son, and most times make it a mother-daughter event with my Mom...whose Cindy is Linda. It's probably important to note that both my mom and I are primary caregivers for family members who have intense support needs. My son Shane has Cerebral Palsy and my dad suffered a debilitating stroke. We are both on call 24/7 doing what needs to be done to meet their needs, so personal time is precious and takes a lot of coordinating.
So, on August 22 Mom and I headed to the Clarion having booked the appointments six weeks in advance...with our 'people'. It was going to be a great day as always! We'd both looked forward to it for days. When we arrived at the Clarion, we were greeted by the receptionist. out of the corner of my eye I saw two ladies I'd never seen before standing off to the side, obviously waiting for their customers to arrive. As we finished the formalities at the front desk the ladies stepped forward and introduced themselves saying that they'd be providing our services for the day. I can honestly say I was so taken aback that to this day I don't recall the name of the young lady that shook my hand, but I fear she will remember mine.
"Where's Cindy?", I asked looking around.
"She's busy with another customer today," said the receptionist.
"She can't be," I said. "I always have Cindy...I requested her specifically."
""I'm sorry Ma'am (making matters worse...I hate being called ma'am") They must not have noted it on your chart. Cindy isn't available at all today. We could reschedule your appointments for tomorrow if you'd like...it looks like that is a possibility."
Inside my head I started to scream. "Are you crazy!!!! We live two hours away; we've had to book this day for weeks with respite and support....we can't just come back tomorrow! We didn't by-pass all the options in Portage just for any old pedicures! We want our people! I WANT MY CINDY!!!"...but outwardly I just said, "no, that's fine."
But it wasn't fine. It wasn't fine at all, and even though I'm noramlly a calm, pleasant, rational middle age female professional...for the next hour I was a mess! I felt a knot in my stomach and a clenching in my fists and teeth. I wanted to be pleasant but I was angry and frustrated and disappointed that my expectations could not and would not be met. i kept talking to myself in my head saying..."Just relax, it's only a pedicure, it's not the end of the world. You can try to come back in a couple of weeks and get Cindy to fix things. But...'myself'....just would not listen! I couldn't relax! I couldn't be pleasant! I couldn't enjoy my time! I was a breath away from 'Having a Behavior'!!!!! And my poor mother...she had never seen me in a mood like this before, it even took her aback.
As I sat there fuming, it suddenly occurred to me that this is what Alice must experience every time her expectations are not met! If my mood can be altered so negatively because the person that normally points my toes is replaced now does she feel every time a staff person that she does not know and does not trust and does not have a relationship with shows up in HER home to provide for all of her personal needs? How does she feel when she wakes up in the morning and finds that the staff she'd expected to be there has been replaced with a stranger, or worse a male stranger, because that was the only person available to fill the shift? When the things that she's planned for the day get changed because the support person doesn't understand her communication or doesn't feel like doing what she has chosen to do? The light bulb in my frazzled head lit up!
I thought about my frustration, being a person who can very clearly express what's upsetting me, yet still feeling so upset sitting in this chair with a stranger, not 'my' Cindy. I suddenly, finally, realized how utterly hopeless Alice must feel when this continually happens to her week after week, month after month, year after year. I I wore her shoes I'd be throwing furniture too! You are damn right I would!
What started out as one of themost maddening, frustrating, disappointing hours suddenly turned out to be one of the best learning experiences I've had in my work in this field. I still hated my toes, I still couldn't forgive the Clarion for messing up one of my special mother/daughter days, I was still frustrated by what had happened, but I did gain a very valuable understanding of what it must be like to have that lack of control in the day in day out experience that is your life story. For that, I will always be truly grateful.
Today when people talk about how frustrating it is to work with certain people who exhibit behaviors I tend to look down at my now corrected 'Cindy Toes' and think to myself, 'Yes, I'm sure that it is...but have you put yourself in their shoes for a day?" Then I pose the question to them. Wouldn't it make an incredible difference in the lives of the people we support if indeed each of us could actually say that 'Yes, we've been in their shoes"? Even if those shoes were sandals during a pedicure where all the things we'd anticipated did not happen.
That was my story from 2008. It earned me a 25/25 on grading, but it has taught me a lesson that I never forget when someone talks about the 'behaviors' of someone they support. What is all the background information? What were they expecting? What actually happened that led to the 'behavior'? And on one final note....the Clarion has never not given me 'my' Cindy since that not so great day...and for that I am truly grateful!
That is not to say it's been a life without challenges. There have been no end of them along the way. There was the challenge of experiencing a level of exclusion and bullying when I was a chubby, six year old child starting school in a community where I knew no one, and no on knew me: of being trapped in a bad relationship with an abusive partner in me teens and twenties and finding my way back to myself when it was over; of losing my first husband to cancer when both of us were too young. And of course there was what might have been the biggest challenged: coming to terms with my son's disability and the change in direction that life had to take as a result.
But through each challenge, I've also been graced through having my health, my family and my friends. Three things that I've always believed are key to surviving whatever life throws your way. Having that, each challenge has not only been survived, but has allowed me to grow and learn, rather than wither and fade. To not only survive but to thrive! I've had the opportunity to learn that time does heal, bad memories do fade and life does go on even if it is in a much different direction that the original plan had been laid out to go. All of it made me who I am.
I believe it is the challenges and struggles that have eventually led me to be the person I am and do much of the work that I do. They have given me a unique perspective on many things and a different vantage point from which to look for answers and solutions to the challenges that the people I support today find themselves contending with. To better support the supporters of the people who struggle with 'difficult behaviors' I have spent hours attending workshops and exploring websites of people like Michael Kendrick and David Pytoniak, hoping to learn from the ones that have worked so hard to figure it out before me. I've tried mentally to put myself in the shoes of some of the people I support as I've talked the talk and shared what I've learned.
One of those people is a lady is a lady i'm going to refer to as Alice to ensure her confidentiality is protected. Alice is a woman about my own age who lives on her own in a small city in Manitoba. But where my life story has been one of hope, support and relationships, hers has been one of pain, disappointment and heartaches. Alice has a developmental disability and struggles with communicating in a way that most of us are able to understand. When we are unable to do so, Alice resorts to behaviors that she knows wil get our attention in an effort to make her perspective known. Sadly, people come and go from her life at an alarming rate, as is so often the case for people who experience disabilities. No sooner does a staff person learn to understand her wants, needs and desires they move on and are gone. The knowledge gained going with them. Then Alice must start over once again, with another stranger and the cycle continues.
Having now been part of her life in my paid capacity for several years, there are certain things that I've come to know about Alice. Like all of us, she wants choice in her life, especially when it comes to who supports her. She likes men, but doesn't want them as support staff. She wants to know who's going to be there ahead of time and she doesn't like surprises. When any of those things do not happen for her, there is a very strong likelihood that Alice will have a 'behavior'. Unfortunately for her, sometimes the people who have a large amount of control over her life neglect to respect those things that she has made known and don't listen to the people that know her story. So behaviors happen, triggering more change in support, in medication and in her life. I have always felt that I had a pretty good understanding of her and what she experiences. I've certainly always been able to talk the talk about it, but on August 22, 2008, I found myself in a situation where I had the opportunity to walk the walk and that day my understanding deepened.
So I need to backtrack just a little here. In 2004, at the age of 44, I discovered pedicures! Since that time it's a luxury afford myself and is a big part of my self-care routine. I'm not ashamed to say...I love my toe-nails! Laugh at me if you will,but they really have become a part of my identity...of who I am. I always contend that it doesn't matter how hard or crappy the day might have been, at the end of it I can stretch out on my couch, put up my feed and say to myself "At least I have great toes...just look at them!" Many will find that silly, they haven't walked my road. Some day's it's something that small that gets me through to the next day.
What is important to this story is that I don't just have any ordinary toenails, I have 'Cindy-Toenails' and that makes all the difference! For years I have been loyal to a wonderful young woman who does pedicures at the Clarion. She does the most amazing art and can meet any particular whim I might have about what I need on my nails. She's an incredible artist and can meet my whim be it flowers, palm trees, snowflakes or musical notes. I love my Cindy! Half of the fun is seeing what she'll come up with each time, but the other part of it is the relationship we've developed over time. She knows me, my story, my people, my likes and dislikes (she knows not to offer pink...I'm a purple girl)...and she knows this is 'my time' being spent being pampered before I go back to my life as 24/7 caregiver.is a big part of my keeping my sanity. I book our appointments weeks in advance, I arrange my schedule around when she's available, arrange respite and child-care for my son, and most times make it a mother-daughter event with my Mom...whose Cindy is Linda. It's probably important to note that both my mom and I are primary caregivers for family members who have intense support needs. My son Shane has Cerebral Palsy and my dad suffered a debilitating stroke. We are both on call 24/7 doing what needs to be done to meet their needs, so personal time is precious and takes a lot of coordinating.
So, on August 22 Mom and I headed to the Clarion having booked the appointments six weeks in advance...with our 'people'. It was going to be a great day as always! We'd both looked forward to it for days. When we arrived at the Clarion, we were greeted by the receptionist. out of the corner of my eye I saw two ladies I'd never seen before standing off to the side, obviously waiting for their customers to arrive. As we finished the formalities at the front desk the ladies stepped forward and introduced themselves saying that they'd be providing our services for the day. I can honestly say I was so taken aback that to this day I don't recall the name of the young lady that shook my hand, but I fear she will remember mine.
"Where's Cindy?", I asked looking around.
"She's busy with another customer today," said the receptionist.
"She can't be," I said. "I always have Cindy...I requested her specifically."
""I'm sorry Ma'am (making matters worse...I hate being called ma'am") They must not have noted it on your chart. Cindy isn't available at all today. We could reschedule your appointments for tomorrow if you'd like...it looks like that is a possibility."
Inside my head I started to scream. "Are you crazy!!!! We live two hours away; we've had to book this day for weeks with respite and support....we can't just come back tomorrow! We didn't by-pass all the options in Portage just for any old pedicures! We want our people! I WANT MY CINDY!!!"...but outwardly I just said, "no, that's fine."
But it wasn't fine. It wasn't fine at all, and even though I'm noramlly a calm, pleasant, rational middle age female professional...for the next hour I was a mess! I felt a knot in my stomach and a clenching in my fists and teeth. I wanted to be pleasant but I was angry and frustrated and disappointed that my expectations could not and would not be met. i kept talking to myself in my head saying..."Just relax, it's only a pedicure, it's not the end of the world. You can try to come back in a couple of weeks and get Cindy to fix things. But...'myself'....just would not listen! I couldn't relax! I couldn't be pleasant! I couldn't enjoy my time! I was a breath away from 'Having a Behavior'!!!!! And my poor mother...she had never seen me in a mood like this before, it even took her aback.
As I sat there fuming, it suddenly occurred to me that this is what Alice must experience every time her expectations are not met! If my mood can be altered so negatively because the person that normally points my toes is replaced now does she feel every time a staff person that she does not know and does not trust and does not have a relationship with shows up in HER home to provide for all of her personal needs? How does she feel when she wakes up in the morning and finds that the staff she'd expected to be there has been replaced with a stranger, or worse a male stranger, because that was the only person available to fill the shift? When the things that she's planned for the day get changed because the support person doesn't understand her communication or doesn't feel like doing what she has chosen to do? The light bulb in my frazzled head lit up!
I thought about my frustration, being a person who can very clearly express what's upsetting me, yet still feeling so upset sitting in this chair with a stranger, not 'my' Cindy. I suddenly, finally, realized how utterly hopeless Alice must feel when this continually happens to her week after week, month after month, year after year. I I wore her shoes I'd be throwing furniture too! You are damn right I would!
What started out as one of themost maddening, frustrating, disappointing hours suddenly turned out to be one of the best learning experiences I've had in my work in this field. I still hated my toes, I still couldn't forgive the Clarion for messing up one of my special mother/daughter days, I was still frustrated by what had happened, but I did gain a very valuable understanding of what it must be like to have that lack of control in the day in day out experience that is your life story. For that, I will always be truly grateful.
Today when people talk about how frustrating it is to work with certain people who exhibit behaviors I tend to look down at my now corrected 'Cindy Toes' and think to myself, 'Yes, I'm sure that it is...but have you put yourself in their shoes for a day?" Then I pose the question to them. Wouldn't it make an incredible difference in the lives of the people we support if indeed each of us could actually say that 'Yes, we've been in their shoes"? Even if those shoes were sandals during a pedicure where all the things we'd anticipated did not happen.
That was my story from 2008. It earned me a 25/25 on grading, but it has taught me a lesson that I never forget when someone talks about the 'behaviors' of someone they support. What is all the background information? What were they expecting? What actually happened that led to the 'behavior'? And on one final note....the Clarion has never not given me 'my' Cindy since that not so great day...and for that I am truly grateful!
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