Blog Posts

All because I love you. All because you love me.

1/18/2016

Look at my life. I'm floating like mercury around the earth.
My footprints shine with stardust.
All because I love you. All because you love me.
Maya Angelou

My Dear Shane,

We're here again....January 18...your birthday...my forever changed day...and for all that has changed, there is one thing that hasn't. I still miss you and spend this day with you so close in my heart that I can feel you here beside me.

I've been wandering around the house, knowing that I should sit down and actually attempt to accomplish something, but accept maybe this will be my accomplishment today. Then I ask myself...do I really need to do more, than to spend this day remembering and honouring?

I remember listening to Nate on Oprah a few years ago. Talking about his partner who died in the tsunami years ago. His advice to a grieving Mother on that show was not to let dates, like birthdays, control your emotions or define you..but I've always wondered how he thought we Mothers, who have lost our children, could actually do that? Because a child's birthdate is also the date that we, as the Mom, changed forever...from who we were into 'Mom'...and that change is something that can never be forgotten, nor do I believe it should be. We all celebrate our life's milestones...anniversaries, accomplishments, recoveries...and with that, I'll continue to celebrate you, and who I became because of you, on this date. If I were to begin to forget that...I believe I'd begin to forget who I am..."All because I love you. All because you love me." I don't want that to ever happen, that will mean life has ended.

I'm trying to imagine you at 24 today. I spend time with Trem, and try to picture you at that age. I can't.

I begin to wonder what life would be like today if you were still here. Would any of the plans I was so carefully working on have happened? Would you be out in the world on your own, living independently with a friend? Or would I have chickened out, as I suspect I might have, and still be keeping you here with me...close and safe? Things we'll never really know, but things I have to ask myself over and over, when I am talking to other parents who are challenged and afraid to 'let go' or 'hold on differently' to their own children. Could I really have released you into the world so easily? Maybe you knew the answer, and chose to release yourself into more in a different way. I wonder about that sometimes.

I remember reading the book 'The Shack' by William P. Young a few years ago. There's a place in that book that has stuck with me always, where the daughter who had passed visits her siblings at night through dreams, to play and connect. I like that idea, because if it is so, I know there isn't a week goes by where you don't come to visit me. Sometimes you come as the baby you were. Sometimes as a young man who is able-bodied and free, as my heart believes you now are. Sometimes in the body we both knew so well, with all of its challenges and struggles. In some dreams you are there just to give the love and hugs that you were so very, very good at giving, and I am allowed to just wrap my arms around you and hold on tight. To smell your hair and feel your warmth. I love those dreams. In others....I think you purposefully come to remind me that as much as I miss you every day, life was not easy for either of us. Life was good, life was full, but life was not easy. I believe you work hard to remind me of that on the days when I wish you back here with me. Just as you taught me a million lessons that I needed to learn in your life...you continue to be my teacher in your passing. "All because I love you. All because you love me."

I think in some of those dreams you also come to remind me that the work isn't done. That the lessons we learned together are not to be forgotten, or neglected, because there are still others that can be supported on their own journey by what we learned together. When I get lazy..or maybe just lost..you slip back in at night, with reminders of those whose lives I could still affect, then slip away again. It is kind of like....I can run, but I cannot hide...from that element of my purpose. You won't let me.

So, now I'd better go and start the day. A day, so different in so many ways from the ones we shared, but in other ways, I am still guided by you and your life..to do, to share, to make change where I can. Though many of my hours are spent with a different focus, there is still the underlying thread of your life that says 'keep reaching out, keep advocating, keep telling the stories that will move the world forward' into a better place for people of all abilities. You did that. You unleashed that passion in me, and in Trem, and in Bianca and Cecil...and others that I likely don't even know of. Because of you, there are lives that are being made better every single day, by one small act of kindness or support or another.

The other day I read this quote. "We originate from the stars, we are star people. Once we finish doing what we come here to do, we go back up to those stars." by Wilfred Buck. It brought me back to this picture of you and I and the Maya quote that Janis had put on it and sent back to me when I lost you. You finished doing what you came here to do, I guess I still have work to be done. So on this date I will continue to remember and celebrate and honour you...always, until we are both 'back up to those stars.' 'All because I love you. All because you love me.'

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Finding purpose in the sharing of stories...

7/17/2015

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Don't we all just have those days, when you're just not sure what it is all about? What you're meant to be doing, or saying or achieving in life? Days when the questions far out weigh the answers?

As a Mother who has lost her child, I know I struggle with that often. Even though it's been six years now, and life has taken on a new form and a different flow, there are still those days where I ask myself what is it all about. What were all the lessons that I had to learn for anyways? What are the next steps when what you believed your purpose was has changed so drastically? What now?

I have more irons in the fire and things on my to-do list than just about anyone I know. The endless little piles of projects and ideas and things to yet be accomplished are scattered beyond my office, they area throughout my home, as I pick at pieces of what might be next, trying to put it all together in a way that makes sense of life. I read and re-read the writings in my journal, seeing myself asking myself that question so often. The answer is so close, but still just out of reach most days.

I become so busy being busy, that I neglect to sit back and just review and reflect. I know it's important, I encourage and challenge others to do it all the time through my life coaching. But like all people, sometimes I neglect to take my own knowing and turn it into action. Then I get a day like today

This morning, in an effort to get through one of the piles on my desk, I came across some of the feedback forms that we'd received after our presentation at the CCDDA conference in Winnipeg in June. I'd read them quickly then, but not since in all the things that we've been 'busy' at. So this morning, I took the time to scan them into my files, and post some of the authorized testimonials on our website, and in doing so, was reminded of what is so much a part of my purpose. I am filled with gratitude.

The kind words, the heartfelt encouragement and gratitude for what Trem and I share, reminded me of just how important it is that we do keep sharing. That we continue to tell Shane's story...our story...and his lessons and his teachings to us...because he was one of the greatest teacher's that I have ever known. To be able to share that and reach the hearts of others through our words and my music is such an honor...such a gift.

Sometimes I need to gently remind myself, that it was not all for nothing. That there was meaning, and knowledge and wisdom that was gathered on every step of our journey together, and that by continuing to share it with others, we have the opportunity to make the journey of another less lonely. To share it ensures that nothing is lost. To offer another parent hope that what they want most for their son or daughter...love and acceptance and meaningful relationships...can be possible. Not easy, not without intentional work and effort, but none the less possible.

Maybe something that worked for me will work for them. Maybe something that moved Trem to embrace that friendship, will inspire another to take those little steps that changed all of our worlds. Maybe ... just maybe... a child's life and a families experience will be just a little bit easier because of our being open and sharing what we went through with others.

Maybe that is the point of so much of our life's purpose and journey, every one of us. Just to share our story, teach what we learned through what worked and what didn't, to keep offering light, and hope and optimism to those that we encounter on this walk through life. We are all on different paths, but we all share the road we're traveling.

Whether it's through presenting at a workshop or just being available to answer a question or offer a suggestion to another whose path is similar, maybe the purpose is just to do it with authenticity and an open heart..

And maybe when we need our own answers the most, they are given to us...through the kind, thoughtful feedback of others. Thank you all so much for that.

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

5/7/2015

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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!

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The Resilience and Brilliance of Special Needs Families

5/5/2015

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I the work I was doing with LIFE I had the pleasure of participating in a part of a project that was initiated called The Kitchen Table Conversations. The Kitchen Table Conversations were a unique opportunity to witness first hand the resilience and the brilliance of Manitoba families whose children live with special needs. It didn’t matter if their child was five or fifty five, the passion and desire that parents maintain to ensure their son or daughter has the most fulfilling life possible was the same. Those of us that were honored to be invited into the lives of these incredible people were reminded once again that it is the relationships in people’s lives that give those lives meaning and opportunity. Opportunities that funding and systems that have been put in place for people with differing needs alone could never provide.   Out-side the box thinking and the focus on inclusion was always paramount to ensure the best for their child. For all that they have to go through to support their children, they are truly resilient. My personal knowledge of what they went through being a parent myself, only deepened my respect and awe of those we connected with.

One situation that struck me most deeply was in one of our earliest Kitchen Table Conversations, in the south central region of the province. One of these amazing mothers shared the story of her son Darren, who lives his life on the Autism spectrum as well as being visually impaired since birth. Darren has had the opportunity to be educated with same age peers in a typical school setting. The supports put in place ensured that Darren continued his school years with these peers, developing strong and lasting friendships with many classmates.

However, as is the fear of so many parents who have children with special needs (myself included back in the day), his mother was concerned that in their middle teen years that Darren would begin to see less of his friends. With everyone else having the opportunity to acquire their driver’s license and begin exploring life as the young adults that they were, her fear of Darren getting left behind was beginning to be realized.

Determined not to let this happen, the mother came up with a plan that she hoped would ensure that Darren still had the regular contact and connection that was so very important to him. Although Darren’s blindness prevented him from being able to get a driver’s license, it was not a deciding factor in whether or not he could own a car. With that, she went out and purchased one for him. She then made an offer to all of Darren’s friends. Darren’s car was available to any of them to use at any time for any event that they wanted to get to, whether it was a sports game, a dance, a concert. It didn’t matter to her. There would be gas in the car and it would be ready to go.   Her only stipulation was that if they were taking the car out, they would take Darren with them.

It didn’t take long before Darren’s car was hardly ever at home. Neither was Darren! All of these friends had passed and acquired their driver’s licenses, but none of them had cars or the kind of access to a vehicle that Darren’s mom offered them.   Darren’s teen years were a series of trips to Winnipeg for events of every kind. Sunday drives in the country. Cruising the main drag on a Friday evening. All the things that teen age boys thrive on when that first taste of freedom comes attached to that little piece of paper called our driver’s license.

As for Darren’s mom, she was never concerned about his safety, because these were his friends. They’d grown up together, played together and learned together. She knew that his best interest was always at the top of their minds and they appreciated the opportunity that they’d been given far too much to ever risk losing it.

Now they are all older, Darren’s car is not nearly as attractive as the vehicles his friends have managed to buy for themselves. But because of the support those relationships were given, thanks to the old car, Darren is a regular fixture in the sports cars they’ve traded up to. Brilliant!

Families do amazing things to facilitate friendship and relationship for their children with special needs. There are thousands of incredible stories out there, and we'd love to hear them! We'd love for this space to be place where families and people share their incredible stories of the things that they've done to inspire inclusion and acceptance of their loved onw in a world where differences can keep us separated, but the love of those who care keep us connected.

Just My Friend is all about that...connections, relationships and inclusion. In the end, what more really matters? The photos I chose are to bring the point home, from our own efforts in organizing Shane's own Sunshine Dreams for Kids which was one of our personal efforts to ensure that Shane's experiences included his friend and his sister...who people that could best share his story.

Do you have a story you'd like to share, or know of a family that is doing amazing things to ensure the relationships that are so important to their son or daughter's experience are being supported to continue? We would just love to hear them!

Until next time,

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Compassionate Friends

12/11/2014

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One of my favorite pictures. I don't even know who captured it, from a long, long time ago,but still makes my heart sing.

I've been a little quiet on hear of late. As far as the presenting goes life has been keeping both Trem and I busy on other fronts, and I've dedicated less time to this side of my world. But I always trust that life is unfolding as it should, and we have some great opportunities coming up in the new year! We have been asked to present at next year's CCDDA Conference in Winnipeg in June, and that's huge, so we are both excited and honored to have been invited!

For now, I've been sharing my talent and story on other fronts. Most recently providing music for the local Compassionate Friends Chapter's annual Candle Light Remembrance Service. I know that if I hadn't shared the journey of all those other parents who have lost children, that I couldn't sing their experience in a way that helps them to heal and get through this very difficult season. I feel so fortunate that I've been given the tools that allow me to do that, and the strength to be able to. I thank Shane for that. And being a part of that evening reminded me in the power and the strength that friendship has in helping us to endure the absolutely worst things that life can throw at us. Not simply endure, but to come out the other side of it.

Just my friend is about the story of Trem and Shane's lives, living with and without disability. But as Trem and I always try to ensure people realize, it's not just about opening yourself up to someone who has a disability. It's about opening your heart to others who are different from you in any way, whether its race, color, religion or any of the things that might have us see someone as being different. It's about being open and aware of the fact that friendship is precious and invaluable to all of us. Its what widens our worlds and our perspectives. It gives us a sense of belonging that we can't get anywhere else. It is so, so important in this struggling world we live in and by offering our friendship to another, we can change the trajectory of a life. We can help them rewrite their story and open up possibilities that could not have been available without had we not connected at some deeper level.

I've been thinking so much about that over the last many weeks, hearing the news that is going on around the world. The missing and murdered, the racial clashes, the heartbreak that is happening in all corners of this magnificent earth we all share. What is it going to take for people to open themselves up. See that we are all one people, sharing this one planet and that we could accomplish so much by building each other up, rather than by tearing each other down.

Those are the thoughts and questions that are really filling my head and heart these days. They are also what keeps me so grateful for the many gifts of friendship that I've been blessed with over the course of my life. I can't imagine my journey without a single one of you!

Over the holiday season, I hope my presents will be my presence to my family, my friends and the small parts of the world that I can impact and influence. By lending my voice and my own abilities to causes that can move this world of our closer to the peace and belonging that we all yearn for, maybe I can be a small ripple in this huge ocean that we co-exist in. That would be a gift!

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Children have the potential to change the world!

10/25/2014

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Last Friday Trem and I were invited to MacGregor Elementary School to share our story with the Grade 5 and 6 students there. It's what we've talked about being an important avenue to share our story through, but this was our first opportunity to talk to kids in that age group. We were both a little nervous, I'll admit.

It was amazing to be there at MEC, back in the building and the atmosphere where the whole story began. Sharing the memories, the joys, the heartache, the anger of the dreaded 'anonymous letter' and the tragedy of Shane's passing. Fifty-some pairs of eyes upon us, encouraging us on, engaged in our story and being open and willing share their own experiences. It was an amazing afternoon, and we both so appreciate those children and their teachers who spent the time with us.

But isn't there always something so cathartic about sharing our story and our memories and our learning with those that we hope will carry that seed of insight with them into their own day to day lives? The vibrant, engaged faces of those beautiful children gave me absolute hope that the story we shared will live on, that lessons will be digested and shared, that wisdom will be passed along by them to others whose lives they will reach.

That's really what all of life, and this work in particular, is about isn't it? Having the courage to stand in the middle of our messy, heartbreaking, earth shattering stories...and trust that the listener is walking that path with us as we work our way through the memories...good and bad, sweet and sour, life nurturing and soul challenging. Our greatest of human hopes is that when we've had the courage to share that deep, protected part of ourselves with another that our vulnerability in doing so will be honored and respected. That the lessons learned and shared will be seen as the valuable possibilities that they are. Possibilities of a better time, a better understanding, a better future and a better world for all of us, regardless of our strengths and abilities.

My deepest gratitude to those students for your kind attention and engagement as Trem and I shared. My fondest wish is that you'll remember pieces of Shane's story and message as you travel on through life. I hope you know the power and the impact that your understanding and sharing those lessons may possess, because you are the generation that has the potential to change the world as we know it. As young as you may be now, you have the wisdom, the tools and the technology to be leaders in a tomorrow that will see all persons valued as equal and all people embraced by their communities. What a gift you are this world of ours! Thanks for being you!

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Kanye Questions

9/16/2014

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Kanye pushing all fans to stand. Photo from BING photos.

My son has been gone for over five years now, so we currently don't live day to day in the world of disabilities that directed our lives for so long. However, a huge part of my heart still remains there, and I think it always will,

On some days, like today, I feel a little piece of it crack and break with the sadness of events that go on around the world. Seeing the recent Kanye West video of his concert Qantas Credit Union Arena in Sydney on Friday (Sept. 12) was one of those events.

Although I can see now it's been a big news maker on many television fronts, it came to my attention through Facebook, on a link another mother shared and the accompanying Bill Board article about the event. (Click here to read the full article). It began when West called out two people in an audience of thousands for not standing when he asked the entire crowd to stand up before performing a song. One person was in a wheelchair, the other had a prosthetic that wouldn't allow them to stand. It turned into a full four minutes of singling out two individuals that ended up being the focus of all others in attendance, while the show was held up. The booing and the chanting "stand up, stand up" continued until West's security determined the wheelchair was in fact real, and finally the show resumed.

So many of us have such a small circle of influence, where we can change a few hearts, minds, and beliefs through our words and actions. We're always hoping to plant just a couple of small seeds that will move the world towards a more inclusive and accepting place for all people and would love to have the kind of reach and impact that Kanye has. With West's ability to reach so many people, used in a positive way this could have been such a wonderful teaching moment for those thousands of fans who live life with able bodies. Instead it turned into a mockery. What a sad message to send and what a missed opportunity to move our world forward.

My biggest heartache is for those two individuals. To have been singled out that way, and made to feel so different and isolated in a world where decades have been dedicated to bring people with all kinds of abilities into typical community places and events. It must have been horrible for them, and sad for the movement towards inclusion and participation.

I've explored deeper to see where things went from there. I do see that almost 5 million people saw the video of the incident that was only published 3 days ago, and it has hit some of the big news. In one video Kanye seems more intent on making sure that the morning news shows don't 'demonize' him, without ever saying that he might have done things differently in retrospect. In another he says there was 'no malicious' intent. Another actually referred to a concert in Austin earlier in the summer when he assisted a young person in a wheelchair to get a better place to sit so he could actually see the concert.

I don't know him, and won't profess to guess where it all stemmed from. Maya Angelou said "we do what we do, when we know better we do better. " Whatever happened, lets hope there's a turnaround lesson learned for the next time, for the artist and his fans. Lets hope some of those 5 million viewers were advocates or self-advocates who are bothered enough by it that they are inspired to continue to educate those in their circle of influence. Circles ripple and seeds grow, so maybe this will be a trigger to so that change can continue to happen and others continue to grow forward by speaking up.

Maybe the bigger question, how can we help people of influence to know better, to understand the journey more deeply and to use those teachable moments to celebrate and include difference.

Till next time

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Parents are so creative when it comes to their children with different needs!

4/8/2014

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Click picture to go to Upsee website

Parents are so amazing when it comes to figuring better ways and increasing opportunities for their children with different needs. Resilient and creative are but a couple of words to describe them!
I often think about the things that Cecil created to make life 'more fun' for Shane. The sleigh we could ride in together. The seat for the back of the 4 wheeler so he could go quadding with the rest of us. All the little things around the house that just simplified life a little.
Recently I saw a video on this, and when I see something that I think is incredible, I want to share it! I only wish I'd thought of something like this. How many things could have been made more inclusive, while exercising those little legs at the same time. And of course it was a Mom that created this!
If you know of families who have young children with mobility challenges, pass this information along to them. It may be something that will help them to keep their child involved even more deeply than the many things I know they are already doing!

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"...I am just human..."

4/5/2014

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I am always so proud when the people we work with and for find their own voice to help move the world forward into a more accepting and inclusive place! I don't know Bob Hebert, but I know he speaks volumes as a teacher to all of those whose live he touches! Wonderful stuff!!!

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Every day is one step forward, two steps back...but then we move forward again!

3/19/2014

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a favorite picture of Shane with his posse....Wyatt, Trem, Steve and Cody

Today was a very interesting day of varying perspectives for me. But then, most days are :)
This morning I spent time with a young man who is aging out of school. Me explaining the option of 'In the Company of Friends' to him, and how it might by a good option based on the supports, gifts, dreams and skills he has. He had a moment where he shared there were times he didn't feel his life was worth living, because he so deeply felt the differences between himself and the other students around him. I tried deeply to assure him that his gifts and contributions did have meaning. Did have an impact, most likely beyond what he may ever really know. Did have a reason it the big scheme of things. I hope I convinced him of that, although I don't know for sure that I did, however my life experience knows that to be true.
     From there I carried on to another event with a long time family friend who shared her frustration at how many people she encounters who still don't necessarily see people as people, understanding or appreciating the value of people who live their lives differently through their challenges...physical, intellectually, mentally, or emotionally. We agreed that the world is not yet perfect, but I choose to believe that every single day it's getting just a little better through the efforts of people who are pushing for more for our friends and family members who experience life differently because of a variety of diagnosis.
   It all adds to the interesting perspectives that I know Trem and I will experience in each of our presentations. Those that definitely get it. Those that struggle because of their own view of the world, the lens through which they see things. It's all okay....and how do I know that? Because that's the way it is.
   For ourselves, we're very excited to be presenting our story on March 20th (tomorrow) again in Brandon. Every person touched is another individual that may pass the torch of understanding we are trying to share. Like the old man that plants an apple seed in his treasured back yard....chances are he will never know the fruits of his labor. The smiles and enthusiasm from appreciative youngsters that enjoy that fruit decades down the road. The lives that he will touch generations down the line, through his passion of sharing what he knows to be true today. We are that trusting gardeners who's hope lies in this faith. That is perfect, because as with him, we too believe that the seeds of possibility we are planting in sharing our story are going to reap amazing rewards for children and adults that we'll never, ever likely know the names of...and that's okay. As long as our passion and dreams for something better makes a difference. It doesn't matter whether or not they ever know our names...or we know theirs. We are all part of this magnificent circle of life that comes back in ways we can't imagine. That is enough.

This story touched my heart deeply, as the perspective of a Father who has learned what we know. Love to share the good stuff!
http://www.cbc.ca/sports-content/hockey/opinion/2014/03/nolan-trotz-has-been-a-big-inspiration-to-his-dad.html

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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!

All because I love you. All because you love me.

Finding purpose in the sharing of stories...

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

Clarion Clarity

The Resilience and Brilliance of Special Needs Families

Compassionate Friends

Children have the potential to change the world!

Kanye Questions

Parents are so creative when it comes to their children with different needs!

"...I am just human..."

Every day is one step forward, two steps back...but then we move forward again!

Lynda and Trem are Grateful knowing....

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