Just My Friend
  • Who are Lynda and Trem?
    • Testimonials
    • Photo Gallery
  • Upcoming
  • Music and Books
  • Blog
  • LINKS
    • Children's Charities
    • Resources and Support
    • Diagnosis Specific
    • Articles and Inspiration
  • Contact

A curly haired angel in a walker

8/7/2019

1 Comment

 
Picture
It was a busy weekend that followed three busy weeks of hanging with grand-kids then working with world class leaders at a leadership camp.  By Saturday, I was pretty exhausted, especially after fighting with leg cramps half of the night.  But I was not going to miss my chance to play at the Family Fun stage at the Kenora Harbourfest event.  I’d be chosen as one of the finalists for the local radio station (89.5 The Lake) in their Sunset Country Spotlight.  I was bound to be there. 


My hope with my music is that when I sing the songs I’ve written, the right person will hear the right words at the right time.  I’ve been writing songs now for darn near 48 years.  I long ago gave up the idea that music would be what made me money in the world, but I’ve never given up the idea that music will and does make me rich.  It has, through the people I meet, the shared stories and experiences, the common hopes for our world.  It’s been amazing really. 


I was on the stage, having the opportunity to play thirty minutes worth of tunes, so that listeners could get a feel for who I am and what I represent as I moved onto the next stage of the Sunset Country Spotlight competition.  I first saw him with his mother somewhere around the third song of my set.  A beautiful, curly haired little boy about four years old, working his heart out, making his legs move the bright yellow/green walker he was strapped into around the tarmac of the parking lot that had been taken over for the festival.  I felt my heart smile. 


I don’t think I’ve performed anywhere in the past ten years that I haven’t built Shane’s song into the set list.  He’s been gone for over a decade now, but he’s still with me with every breath I take.  He’s still my boy, and I still celebrate his life and his lessons whenever opportunity allows.  So it was yesterday.  


I did a brief introduction to the song for the audience, and was barely into the second line of it, when the child who’d caught my eye came into sight again.  This time he headed right to the shade of the tent set up for the stage.  I’m not sure what drew him and his Mom in…maybe just an escape from the heat.  Maybe she’d heard some of my introduction.  I don’t know, but there they were.  I saw him moving to the music, and noticed Mom starting to pay closer attention to the lyrics.  As it continued along, she took him out of the walker he’d be working so hard in and lifted him into her arms as they began to dance together to ‘Shane’s Song’.  His beautiful curly head swayed back and forth, the smile brilliant on his face.  My eyes began to water.  It was all I could do to get through the song, but I had to keep going.


By the time I finished my set they were gone.  I don’t know what Shane’s song did for them, but I know what it did for me yesterday as I watched Mother and child dancing together to the rhythm.  It was the reminder that I needed, after a long, tiring three weeks, that all is well.  When I do what it is I’m meant to be doing,  life unfolds as it is meant to.  Curly headed angels show up to remind me that the message of my song still has much purpose and meaning.  He also reminded of the fun, laughter and connection that was had in days of old, when music made Shane and I get up and dance to the tunes.  It was so important that I was reminded of that as I was. 


After I’d finished, I rejoined friends of mine from Germany who were with us.  The husband was complimenting me on the set, and in particular on “Shane’s Song”, then asked, “Do you practice that smile that comes across your face when you sing his song?”


I told him no, then he continued, “I noticed it was just so radiant when you were singing about him.  So much brighter, it’s almost angelic. How is that?”


I didn’t have an answer, and in truth no one has ever noticed, or at least mentioned that to me before.  But I thought about his words and realized, that it most likely is more angelic and radiant when I’m singing it, because when I do, angels never fail to appear to keep me going.  


Thank you to the little guy in the brilliant walker.  You reminded me once again of the joy in challenge, and of the reason that my work on Shane’s behalf will never be finished.
1 Comment

Family Advocacy Network of Manitoba (FAN)

3/5/2019

0 Comments

 
Picture
Last week was an incredibly busy and rewarding week for Trem and I.  I do a lot of joking that 'I can't believe I came home from Mexico for this!' in terms of the cold and the snow we have, but in terms of presenting our story it was amazing! 

​I had been quite relaxed enjoying our break from the winter weather when I received a couple of emails in early January.  One was from the ED of 
Innovative Life Options, Patti Chiappetta, wondering if I might be home by March 1 for the 3rd annual Family Conference that they were hosting in Winnipeg.  The other came from the librarian at Austin Elementary School, wondering if I'd be around for 'I love to Read' month.  I decided that both were worth returning to the frozen north for, because my heart and my passion still are very aligned with 'Just my Friend' and the work we need to continue to do for people who experience disabilities.   So home we came!
​I worked for LIFE for over 13 years, and the Family Conference was a result of a project I'd been part of starting in 2013.  One of our favorite local 'disability gurus', Bob Jones, had approached LIFE about doing something that was more innovative, and the result was what we'd called 'Kitchen Table Conversations'.  They were small gatherings of three or four family members in various corners of the province of Manitoba to talk about where things were at for their loved ones, what was going well, what could be built upon...what were the dreams.  It was incredible, heart touching work that touched me deeply.


The project resulted in a couple of things.  One was the book ‘Family Matters’ that I wrote in collaboration with LIFE and the ICOF (In the Company of Friends) families that were willing to share their stories.  The other spin off was the Family Gathering Conference, now in it’s third year. 


I made myself available to sit in on most of the conference happenings, all of which were great. Trem and I were lucky enough to get a morning session to talk about our experience in connection and relationship development, which was an awesome experience and well received by attendees.  



Picture
Trem Cleaver and Lynda Dobbin-Turner at the Family Gathering Conference
What I was most excited about over the course of the event was to learn about FAN, which is the Family Advocacy Network of Manitoba.  FAN is a grassroots collaboration of families  for families of people who live with various disabilities.  It has been created with the understanding that it’s other families who best know the needs and experiences of others in the province, with the goal of easing and supporting each other’s journeys.  They are a group of individuals who recognize that change best happens when we work together and share our voices to promote the change and opportunities that our loved ones with disabilities deserve and require to have the best life possible.  I’m excited to see the passion behind this fairly new initiative, and look forward to supporting it’s growth in the province in the years ahead. 

Having sat in on their presentation, I asked if they’d be kind enough to share their story with me, so that I could share it with you…and of course they were.  So, below is the history and opportunities that are available now because of the newly formed Family Advocacy Network of Manitoba.  Please take a few minutes to learn more, because if you have a family member with a disability, or if you know of another family as with everything else, there is strength in numbers.  It is the love of family that has created some of the most incredible changes in so many aspects of history, and it is the love of family that will keep moving the world of disabilities forward into a more supported, accepted and celebrated place. I love the use of the world ‘navigators’ because as Rumi said, “we are all just walking each other home”.  If what you or I have learned with ease the journey of another towards having a better life experience, then lets band together and use those skills as best we can.


​ 
​
​As parents of children with a disability we have commonalities…...the advocating never ends… as there is always a new stage in life and another hurdle to cross.   There is advocating for therapies, with medical professionals, with the school system, transitioning from high school, supported employment, supported housing, respite… . And a humongous commonality is that we advocate as lone rangers… us against the world… issue after issue…. And with authorities that don’t seem to get it.  
We fumble our way through and often only learn about resources during connections with each other.  There is no manual for us and we often speak of how helpful it would be if we had a navigator to help us see our way…. A real person to guide us. 
We hear comments about needing a place where families can connect to provide support, knowledge and share experiences with each other.  A place where families can be heard, to be present and to be influential with the “powers that be” with decisions that are being made for the care and quality of life for our loved ones with a disability…..  It is as a result of our experiences and journey in our world of supporting children with disabilities that the Family Advocacy of MB has come to be.  Rather than feeling like lonely islands in the sea we want to band together to become one big island.  We believe there is strength in numbers. 

Over the years the need for a family advocacy network was a desire.  Through the Inclusion Winnipeg Advocacy Committee meetings this passion grew and in the fall of 2017 we began taking steps for creating a Family Advocacy Network.  Around this period of time there was also an interest with several other organizations on Family Engagement where we were able to share our desire for a network and collected names of other parents that were interested in participating.
On March 3rd 2018, we held our first meeting of the Family Advocacy Network.  There were 33 families present.     We asked the families the following questions:
  1. What is working well for you?
  2. What resources have been helpful? 
  3. What roadblocks have there been for you? 
  4. What is the most concerning thing about the future?  
  5. What would you like to see changed?

On May 5th at our second FAN meeting we took what we heard from March 3rd,  asked the families to prioritize several topics and held in depth discussions in smaller groups.  In closing we agreed that we needed to continue this work to collaborate with each other and to promote change…The persons present in the May 2018 meeting narrowed down the long list of issues that were most relevant to the families and small networks are forming based on areas of interest and/or concern…. Some of which include:  1)Transitioning to Adulthood and Supportive Housing  2) Development of a website 3) Quality of Care in Community Homes and 4) Wages/Training/Education for direct support workers
Just as the butterfly we are evolving and transforming.  In the Fall … the cocoon stage.  By spring we grew our legs…and in Mid May we gained our wings.  We chose our name… Family Advocacy Network of MB or (F.A.N) for short.  We have 181 registered members.  We want to grow and are ready to spread the word more widely throughout the city and the province.  We are asking each and every one of you for your continued participation whether it be through sharing your concerns via emails/letters or by getting involved in an action group.  We have our wings but our destination is far reaching.  We need you to become involved and to spread the word as we have many destinations that we want to visit along our way to our final destination which is ….. a system that will allow us parents peace of mind.  A system where people with disabilities are being adequately supported by the system while being surrounded by a network of caring friends and family and they can feel empowered to live good lives as part of the community. 
 The following are some actions that have been initiated by the FAN to date:
  • In May 2018 … we launched our Facebook Page
  • In June 2018… FAN held a PATH where two facilitators drew out the group’s ideas on:  Possible Future Dreams/Goals and the steps to be undertaken to move the dream forward. 
  • In July 2018 …Letters were sent to several ministers for the purpose of sharing our concerns... and collaborations have commenced     
  • We have created a small leaflet describing FAN and are working on developing a pamphlet and a website
  • In September 2018 seven family members and 3 self advocates of the Fan Network met with Jay Rodgers, Deputy Minister of Families on the topic of Wages/Training/Education for Support Workers
  • In Sept we emailed a one page letter to all the MLA’s in Manitoba and to the Premier’s office to introduce the Family Advocacy Network to them
  • In early Oct CBC news featured us in an article in their news feed & in a radio show segment…. This media coverage increased our numbers on our Facebook page significantly
  • In January 2019 five FAN families met with the Minister of Families, Heather Stefanson and her support team on the topic of Supported Housing and Independent Living
  • We are creating several short videos.  The focus is to create a series of videos that tell the story of families of people with disabilities living in MB and to promote the Family Advocacy Network.  I am pleased to inform you that the first video in the series is ready and will be shown today.  
 
Our hopes for the Family Advocacy Network….is
  • A place where a person can reach out to, whether it be for information, someone to be by their side as a support when they are dealing with a difficult situation, or to offer a helping hand for navigating the system and locating necessary resources. 
  • An entity that will be welcomed to join the table with decision makers for collaborations surrounding needed supports and policies.  Undoubtedly our lived experience would be an asset and have a positive influence for our family members with a disability and their families
  • To see a different system come into being for our Manitoba families connected within the disabilities community.  A system that will allow parents to have peace of mind knowing their children with disabilities will be safe and secure now and for the rest of their lives.  ​

 For more information, or to get un the FAN mailing list, please send an email to families.caregivers@gmail.com

0 Comments

Clarion Clarity:  A better understanding of 'Behaviors' in people who experience disabilities. 

5/7/2015

2 Comments

 
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!
    
2 Comments

    Lynda and Trem are Grateful knowing....

    we are so lucky to have this opportunity to share the things we are doing, and the many things we are learning as we continue to work towards inclusion in all areas of the world we live in !  
    We appreciate having this opportunity to share our experiences here, as we all grow together! 
    Thank you for being part of our journey!

    Archives

    August 2019
    March 2019
    January 2019
    April 2018
    December 2017
    September 2017
    June 2017
    January 2016
    July 2015
    May 2015
    December 2014
    October 2014
    September 2014
    April 2014
    March 2014
    February 2014
    January 2014
    October 2013

    Categories

    All
    Advocacy
    Be The Change
    Contribution
    Disabilities
    Family Advocacy
    Friendhip
    Friendship
    Grief Recovery
    Growth
    Healing
    Importance Of Stories
    Inclusion
    Peace
    Relationships
    Tolerance
    Triggering Behaviors

    RSS Feed

    Subscribe to our mailing list

    * indicates required
Powered by Create your own unique website with customizable templates.