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A curly haired angel in a walker

8/7/2019

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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.
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Family Advocacy Network of Manitoba (FAN)

3/5/2019

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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.  



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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.


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​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

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Just my Friend: Book 1

1/18/2019

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Just my Friend, book 1, available now on Amazon.
January 18, 2019…Shane’s 27th birthday, and even though he isn’t physically here to spend it with me, as with every other day, he’s not very far away from my heart.  That’s one of the many beautiful things about love…it doesn’t die when the body does.  It’s so much bigger than that.
 I thought today would be a good day to share about my latest project, well our latest project really!  As most of you know, Shane’s best friend Trem and I have been working together for several years now to share the story of their friendship.  I shouldn’t say it’s working really.  It’s more like be getting hang out and spend wonderful time with my kids best friend…or my ‘other son’ as we so often refer to him.  In all the years since Shane has passed (it’ll be 10 this March, believe it or not!), we’ve talked about the importance of sharing that story and encouraging others to connect with someone that might live life a little bit differently.  It’s been an amazing project as we continue this journey of sharing and healing together.
 One thing we always talked about doing was to one day write a book about their friendship and experiences.  Lots of thoughts and ideas on it…but when it came down to the actual doing, we shifted our direction just a little, and decided to focus on reaching children.  With inclusion, acceptance, fighting bullying or racism…. we believe that our greatest hope lies in our young people.  To have the opportunity to plant seeds of possibility in young minds has been the catalyst for so much change in the world in the past.  I believe that that’s the answer for making change in the future as well. 
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So, with that, just before Christmas, we completed the first of what we intend to be a series of books that will talk about their life together and the development of their incredible friendship.  We hope that by sharing a few of their experiences, we will be able to do what we do in our presentations, and offer a few little ideas about how things might work for others.  No two friendships are ever the same, but who knows, like we said…we’re just planting seeds!

Shane and Trem ‘Just my Friend’ book 1, starts with when the boys met each other at age 4, and continues through age 9 when Trem received a Young Humanitarian award for all he did with and for Shane.  As Trem said then, as we’ve named our presentation… “I don’t get it, he’s just my friend.”  Those were the sweetest words this Mom had ever heard, and they continue to bring joy to my heart all these many years later.
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In the months ahead, we’ll be looking for more opportunities to present and share our story, and to promote the books.  With my recent move back to Kenora from the west coast, I’m excited to once again be closer to Trem, so that we can continue to do the work of the heart together as long as he’s willing to do it with me.  Don’t ever kid yourself, I know how lucky I am to have ‘my other son’ sharing this road with me.  Just one more of the thousands of gifts Shane brought into my life, and continues to offer as we grow forward without him. 

To order Just my Friend, or any of my other books, please click link below.
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Country 93.1FM interview

4/25/2018

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The trip back to Manitoba in February was steady going, and quite frankly, busy,  but we knew it would be.  I knew it would be, planning a last minute trip to go back to share the stories I’ve written and published.  Setting up as many schools as I could to try and justify the dollars out against the heart tugs in.  It was hectic, and for one who keeps working towards slowing life down, because that’s what the body is requiring, it took a little extra oomph to get through most of the days.  But it was wonderful and it was all that I’d hoped it would be.
 
One of my favorite mornings was spent at Long Plain School, sharing Shane’s stories with children learning in a place where my Mom was the kindergarten teacher for over 30 years.  It was so cool to see how many people who are still their either remembered her, or were taught by her at one point in their lives.  An extra bonus that day was getting the chance to speak with Travis Roberts, the morning show host on Country 93.1 in Portage la Prairie. It was really interesting to hear what was required to do the work that he does, as well as to see the interest that was inspired in the children, with the biggest message being to get your education, and you can achieve anything you set your mind to.
 
I was really lucky that in the last hours of our stay in Manitoba, I had the chance to head into the studio with Travis and talk about the books, Shane’s story and the lessons carried forward and shared because of him.  The session aired after we’d returned home to BC, and with my time adjustment challenges, I missed catching it online, so Travis was kind enough to send me the clips used on radio, and has Kindly given me permission to share them with you here, if you missed it as well!  Thanks Travis, both for sending the clips and for allowing others to share their stories and their passions through your medium.  It is truly appreciated!

To listen to the interviews, click here! 

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I love to Read Month!

4/24/2018

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Last week I made a return trip to Manitoba for ‘I love to read Month’.  It wasn’t a particularly long planned for trip.  I’d been intent on staying out of the cold Manitoba winter weather.  That was, after all, a great part of the reason we chose to move to the West Coast two years ago!  But I’d been enticed by a friend, who’d written to remind me that as it was ‘I love to Read Month’ and as I was an author, I should be there.  After being steadfast on my decision not to go back in February, I went back to Manitoba in February.  ‘I Love to read’ felt too important to miss.
 
I decided that this time I would focus on my “Shane’s Big Adventure” Books, because I had done ‘Tyson’s Orange Shirt’
 last September and have hopes of doing it again this fall if the Universe permits.  I know that Shane’s story has become old to some, and others may feel I should let it go and move on, but that’s not what my heart says.  My heart says that I learned way too many important things during that journey through this world with that young man not to share it.  As the anniversary of the 9th year since his passing approaches, I feel just as committed to sharing those lessons now as I did when he was with me.  If one child who experiences life similarly is seen in a new light, or if one child who sees a child with a similar life path becomes a bit more compassionate towards that child, or a parent with a special needs child feels a little more empowered, then it is all worth it. ​

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​Over the course of the week that I was back in Manitoba, I read to 8 different schools.  I can’t estimate how many children, because some schools had me read to each class separately, while others congregated the kids together.  Each session started with sharing a little bit about Cerebral Palsy, and bit about Shane’s life, the reading of his first adventure, then his second, followed up with my singing his “When you Look at Me”song.  There was always lots of time left for questions.  The age groups ranged from kindergarten through to Grade 8.  The questions varied just as much, with many veering off in unexpected directions discussing and sharing grief and loss.  And that was okay, because I believe that conversations unfolded as they needed to for the children that were there with me in the room at that moment. 
 
I know Cecil and I will question ourselves about the cost of some of my choices to return for things like ‘I love to Read’, presenting ‘Just my Friend’ or talking to kids about Orange Shirt Day.  It is certainly making good use of our kid’s potential inheritance!  But beyond that, doing these things always feeds my soul in totally unexpected ways, and I know in my heart of hearts that I’m doing the right thing.
 
One of the most cherished comments I received was that ‘Your Mom and Dad would be so proud of the work you continue to do.’ I walked away believing that they would be, were they still here.  On that weekend, we had to go out to our house at the farm to do some work on our old home, now being used as a rental property until we make final decisions over the directions our lives are taking.  We’d cleaned everything out of the house when we moved two years ago, but on a shelf in the very back of the basement I found a card that had been left behind.  It was from Mom and Dad for a birthday sometime in the past.  Now I’m a bit of a hoarder when it comes to cards and keepsakes, and I know I have no shortage of cards tucked away, but I don’t often pull them out.  As well, they were on the far side of the country, but here was this single card, addressed to me and the verse inside was all I needed to be reminded my angels are always with me:
You’re a thoughtful daughter, who’s busy every day,
With people who depend on you and many roles to play,
But even so you find the time for friends and family
Giving them the best you can with warmth and honesty.
That’s why it brings more loving pride, than these few words can tell
To see you do so much in life, and do it all so well.

Lots of Love, Dad and Mom


​It was a reminder that all is well.  For whatever I give to keep living the roles I have, there is always more received in return. So here were a few of my biggest takeaways:

  • Reading my stories to kids who realized in our discussion that they were born the year Shane died.  His story now lives in the memories of those who came after.
  • A little girls excitement when she saw the symbols I’d used in Shane’s first book were the same ones she was learning with.  She couldn’t verbalize her excitement, but she was certainly able to share.
  • Seeing how the things Shane taught me and those he affected in Pine Creek twenty years ago are benefiting a child who is learning there now.  The knowledge that inclusion is possible paving the way to ensure it’s happening in other places.
  • Reconnecting with educators in so many different schools.  Folks who had crossed paths with him and carried a piece of him with them.
  • Reading to my grandson’s school, seeing the pride in their eyes, noticing that their fingers were drumming time to my song even though they likely would preferred they didn’t. 
  • Having one Grade 5 student hear Shane’s song and say, “He must be so proud of you every time he hears you sing that for him.”
  • Meeting a Mom whose son’s journey has been so impacted by Shane’s groundwork, knowing that because ‘we made it work with Shane’, having that repeated to her over time has led to it also working for her child.
 
 
At the end I was full and depleted at the same time.  Exhausted and exhilarated simultaneously.  So glad I’d made the decision to go and do this, for whatever reasons I give myself to justify my choices.
 
And when one person commented that they were so happy that I continued to talk and share about that journey, I heard my self say…”It’s part of my life’s mission.” And it is.  I wasn’t gifted with all this learning and wisdom not to pass it on in ways that work.  I’m grateful I was encouraged to do so.  I’m grateful I am physically and financially able to.  I’m grateful to all that allowed me to share over those days.  When it comes down to it, I’m just grateful.
 
Life is a beautiful circle of having the heartbreak turn into such incredible blessings.  To live through the dark and to be able to see the brilliance of the light that is today.
 
Until next time, 
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We are all walking each other home

12/1/2017

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Newborn baby Shane, before we knew what lay ahead of us.
​The call came in yesterday, from an acquaintance back in Manitoba that I’ve known for many, many years.  He’s not necessarily someone that I’ve had the opportunity to know well, but even though our cultures and lifestyles varied substantially, he’s still someone I’ve always had a good relationship with.  The call was on my husband’s phone, but it soon became apparent that I was the person he was needing to talk to, the one that could provide the answers to the many questions that had arisen for him.

In conversations of years ago, Cecil had approached him about the possibility of fabricating a travel buggy for Shane similar to one that we’d seen on our travels to Tofino, BC for Shane’s Sunshine Dream in 2004.  Although nothing came from the conversation in terms of the buggy, it did let this gentleman know, for the first time, that we had a son living with special needs.  Now, all these many years later, he remembered that when his own grandson was born and given a label at birth.  The family suddenly found themselves new-comers in the world we’d navigated all those years for Shane, and he wondered if he could ask some questions.
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We chatted on the phone for about an hour. I told him some of the many, many things I’d learned in living in the system that supported children with disabilities to live life.  I heard myself passionately sharing some of the opportunities that are available now, the social media changes that have allowed families more access to others who are experiencing the same, the things that our children will teach us.  I shared some of things we never realized we needed to learn until they came into our lives.  We talked about some of the fears, the grief and the new learning that will have to take place now that they’ve been advised they are going to be taking the road less travelled. I hope at the end of our talk he was able to feel a little more hopeful and optimistic about the years ahead.  There will be struggles and challenges, but there will also be so much joy given by this precious new life that has been given to them. 
​I ended our conversation with a promise to send him a couple of the books that I’ve written, and heard myself quoting Rumi, saying ‘we are all really just walking each other home’, telling him of my own belief that when we’ve been given the wisdom and knowledge that only life experience can offer us, we have it within our power to ease the journey of so many others if we just share what we’ve learned.

Last night, just as I was drifting off to sleep, I recalled that conversation.  Once again, that age old question ‘What is my real purpose here’ rose up in my head, as I know it does for so many of you as well.  Only this time, the answer became so clear to me.  It rested in the words I had said on the phone.  It’s in almost everything that I’ve worked towards in the years since Shane died, and that has been and continues to be share his story.  Share his message.  Share his teachings.  Share the light of his incredible spirit.
I thought about all that I have undertaken and done.  The songs, the books, the presentations are all a part of that.  I realized however that those just touch the tip of an iceberg that runs so deep below the surface.  I realized that within me is a lifetime of all little, unshared pearls of information.  Things that worked, things that really didn’t but were stepping stones that led to something else that did.  Stories of our journey that might offer hope and inspiration to someone else, just when they really need it.  As I lost consciousness and fell asleep, my last thoughts were that it’s time to start more earnestly and intentionally than I have thus far. If not now, when?

The ground work has been laid.  Now the next stage begins, and I’m so glad that you’ve chosen to join me here. In the weeks and months ahead, I will continue to share those things, to build this website further so that it will offer links and ideas to others.  My greatest hope, is that as I embark on this mission, that you’ll join me with your own input and learnings!  The world about us is changing hourly.  New things are offered, new ideas are brought to reality, and new children are born that need what we’ve learned and continue to learn to be able to thrive in our world.
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I know by the speed that my fingers type as I write this down, that I’m onto something very important to what part of my legacy is going to be.  When we lose ourselves in the moment of what you’re doing, that’s when we know we’re getting closer to answering that age-old question, ‘why am I here’.  I am here for you, just as you’re here for me, because the truth is we really are all just walking each other home.  Together, let’s make that journey incredible!
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The meaning of life is to find your gift. The purpose of life is to give it a way. Pablo Picasso
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I am Just Like You

9/7/2017

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Life chugs along, and if we are doing it right, we keep gaining experience and offerings.  From one day to the next, we don’t necessarily know how those skills will be shared in the world, but the point of the learning is to share it where it’s needed.


A few months ago, I awoke to an email from one of my dear friends in Manitoba who had connected with a lady close to her.  That lady, Lesley Feldman, had shared some of her life story with my friend, and in sharing, my friend knew that there was a story to be told.  She connected the two of us, and with what I’d learned, was able to help get things rolling for what Lesley hoped for herself.


Shortly after we began to work on the story in her heart, she asked about publishing a children’s book that she’d had sitting on her shelf.  Lesley, like myself and so many people that I know, had been bullied incessantly as a child.  In talking about our shared experience, I remembered the turmoil and the pain that bullying had caused me in my young life.  As part of her healing journey, she had written a book that would have children think about the fact that we all do certain things differently, but the bottom line for each and every one of us, is that we want to be accepted for who we are, just like every other person. ​
I am Just Like You is a beautiful teaching tool to have young children start to explore differences in a positive, educational way.  To recognize that we are unique and different, but our needs are the same.  Our need to be loved, valued and appreciated for who we are and what we offer to the world just as we are.


I’ve loved the conversations that I am Just Like You has started in my own family.  It’s ideal for children in the 3 to 5 years of age range, to start conversations.


In the world as it’s continuing to spin, I think we have to use every tool at our disposal to do what we can to develop and mentor the next generation, so that they are more accepting and compassionate that so much of what we’re witnessing around us is revealing.  I think this book is a great starting place for that, and I hope you’ll find it to be the same!


With Love, ​
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Shane's Big Adventures

9/4/2017

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When Shane came along, my musical creativity took a back seat and was set aside for years, as I focused on trying to figure out what was needed to make his life as full and rich as it could be.  As a child who lived his life with spastic quadra-paraplegic Cerebral Palsy, lots of things had to be amended and adjusted to make sure he was always seen as just another kid that did things a little differently.  It could be challenging, but it could also be so rewarding, in how I had to stretch my experience and talents in different ways.  Learning to adjust my own sails to go with the wind that the day presented became an art form in itself.
 
One of the things that I did from very early on, was to try and find ways that Shane could tell his own story.  Keep in mind, Shane was never able to communicate verbally, nor was he able to make use of his hands.  What I began to do was to create books for him. 
 
The first book was a very simple “All About Me” book that was a quick overview of who he was, how he communicated, how he used the wheelchair to get around and what his life at home looked like.  It worked beautifully, as the other kids in Nursery School and then Kindergarten were able to look through it with him at the pictures that shared the many activities his life was made up with.  They were able to learn about his family, his pets, his jobs around the farm feeding the calves, helping in the garden and an assortment of other activities that filled our hours at home.  It gave the other children a glimpse of his life as a normal kid, who just had to do most things in a different way. I also used the Mayer Johnson Communication symbols throughout, so Shane was also learning what would be his future communication style.
 
With the first book working so well for him, I began to make it a practice to create books that told his story whenever we did something different.  “Shane’s Big Adventure 1” and “Shane’s Big Adventure 2” are two of those books.  They are made up of rhymes and pictures that helped to tell the other children about his travels to visit family in British Columbia.  First when he was five years old, then once again when he was nine.
​I always loved the reactions that he received from the other kids, who were able to read those stories with him and share the places and things he did.  The greatest part of it all for me was that it didn’t matter that Shane couldn’t talk to tell his story, he could share through their voices and reading with him, and he didn’t need a hovering mother or EA around to do that.  It could just be him sharing his adventure with one of his peers.
 
All these years later, as part of my quest to get the things that I’ve found beneficial out into the world, I’ve finally made time to put those little binder books into a published format.  My hope is that they will be a starting point for children to begin to learn a little more about other children who live life differently, and begin some discussion about not only differences, but commonalities.  I have found that they are a great conversation starter, and once conversations begin, real communication and learning can unfold.
 
I also hope that maybe another parent who is looking for a way to help smooth the educational road for their own child might find it a beneficial idea that they too could try. Or, maybe they can use Shane as an example of another little boy who had to live life differently, but none the less, lived life fully!
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I’m not sure where either will go, but what was important to me was that I got them out into the world!  There is now a tangible offering that Trem and I can share when we do our presentations, as we talk about the books I created during those events.  If people are inspired to buy them then maybe the proceeds will fund more opportunities to present, and share and keep spreading the message that we all belong, we all contribute, and we all matter. 
 
“Shane’s Big Adventure” books are now available on Amazon in both Kindle and paperback.  Please feel free to share the information about them with anyone that you think my be interested or might benefit.
 
Myself, I’m just so grateful that we live in a world where I get to continue to share Shane’s story, his message and his teachings in hopes that by doing so this world of our will continue to move forward into the inclusive, diverse place that I believe is possible!
 
Much Love, 
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"Family Matters"

9/3/2017

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A couple of years ago, while I still lived in Manitoba and was still the Senior Coordinator for Innovative Life Options (LIFE Inc), I was involved in what we lovingly called the ‘Kitchen Table Talks’. The project was created to bring families who had a child living with a disability and who were not yet being provided services in the adult world together for open, engaging conversation.  Our hope was that we could garner some wisdom from these families as to how things were working, what they were most proud of, what would be most helpful and what ideas they had for their son or daughter’s future.

​We learned, more deeply, what we already knew.  Families are amazing!  They are strong, resilient, innovative and are hungry for information that will make their child’s life as full, inclusive and meaningful as each of our own lives strive to be.  By keeping our conversations on the 'Appreciative Inquiry' stream, whereby we focused on what had gone well that we could build upon, rather than things that were not, we were able to garner a glimpse of the amazing things that families have done to provide the best they can for the children they so dearly love, whether their child is a youth, or an adult.

We realized much of what the families most wanted to know more about were things that could best be answered by other families who had walked this path.  To build upon the wonderful initiative started, it was decided the next step would be to gather some of those answers, and I had the great privilege of being chosen to move the project forward. 

​It was decided that the best way to do that would be to compile a book through interviewing families using the questions that had arisen in the Talks.  I sent out a call to the families I knew that were involved with ‘In the Company of Friends’, Manitoba’s self-directed, independent living model for adults with developmental disabilities.  Ten families came forward to share their stories, and ‘Family Matters’ was born. 
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It was wonderful to spend the time in deep, connected conversation with the amazing people that participated.  Many of them had been as much a support to me when I was raising Shane as I ever was to them in my working role.  They shared, inspired, laughed and often cried, as they recounted the joys and the challenges of the lives we come to know on the unexpected roads of the world of disabilities.  It was humbling to be given that intimate glimpse into each of their lives, and to be given their trust and faith that their story would be shared with dignity and respect, so that those who might benefit from their wisdom would.

So now the project is completed.  ‘Family Matters’ has been published and shares these stories through the voices of the families that have lived the experience. These stories talk about inclusion, support networks, relationship development, the education system and of the many incredible steps that each family took to make sure that what their child needed to be a part of their community was put in place. 

The book, ‘Family Matters’ is now available on Amazon, in both hard copy and on Kindle.  At only 140 pages, it’s an easy, informative read where it can be picked up and explored one chapter/one unique story at a time. 

It was the hope of every parent that participated and myself that in sharing our journeys, another parent raising a child with different, special needs, might feel a little less alone as they journey through life.  Our hope was that something that we learned, some pearl of insight or achieved wisdom might take some of the bumps out of the road for another.

Parents are truly the greatest experts when it comes to what is needed and what is possible for their child. Parents also have to appreciate and then build upon the efforts and the work of the ones that came before, so that we can keep moving our world forward into one that is more inclusive, accepting and accessible for all persons, with and without disabilities.  Family matters provides some of the history and structure that was laid as foundation of the work for the building that needs to continue.  Maybe that work can be achieved a little more quickly and a little more easily, by sharing our lessons and learning, so that previously invented wheels might not have to be recreated.

Thanks to all that contributed.  Thanks also for taking the time to read this.  Please share this information as far and wide as you can, so that all parents who might benefit from the opportunity to access and read these stories, will know that they are there waiting for them!
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Much love, ​

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We're BACK!

6/28/2017

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It's been a while!  A lot has happened...a lot!  A move across the county.  The purging and sorting of a life lived on the prairies. Pulling up our roots in Manitoba, replanting them in British Columbia.  What a ride it has been!  

The journey has always allowed for the things that are important...but sometimes those important things have been put on the back burner while other things took centre stage.  Telling our story has been one of those things I'm afraid.

The time has come though to begin saying yes to the opportunities as they arise, and that's just what Trem and I are doing.  It's more challenging now, being so many miles apart.  But what we've both agreed is that the story and the message that 'Just My Friend' shares is part of our live's missions.  Even when it's challenging and might not always make sense, in my heart it's important to say yes to what matters most.  This is one of those things.

Along with sharing our own story through our presentation, I am so excited that I'm also now able to share the stories of other parents who have walked a similar path to mine!  In the last months I have had the great honour of writing the book 'Family Matters' in collaboration with 'In the Company of Friends' parents and 'Innovative Life Options'.  That project of the heart is now in printed form, and the hope of all of us that were part of this is that the sharing of our stories will ease the journey of other, newer parents who walk this path alongside us.  The book includes a chapter about Shane that I hope will inspire, just as all the other wonderful people highlighted in the other chapters continue to do in sharing their own, unique journeys!
If that wasn't exciting enough, I've also assumed a new role of guiding and supporting new authors to self-publish their works, and one of the first books is called 'I am Just Like You' by Lesley Feldman.  It is a children's book that is aimed at reaching youngsters, helping them to accept and appreciate diversity.  We may all do things a little differently, but under the surface we are all more alike than different.  
So that is where things are at on this marvellous early, summer day.  We are presenting next week at Rock Lake Camp, to help this year's new counsellors gain a little better understanding of the world of special needs. Each life touched is another possibility for a more positive future for our world.  Let us know if there is an event you'd like to see us attend.  Stories shared are what help us all to grow forward.  Till next time, 
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    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!

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