BeverleyPomeroy

Shameless Optimism...

2012-01-28T19:22:00.000-08:00

When you are a parent of disability you waffle between shameless optimism of what your child can or could do, and utter despair for what they are unable to do. And at some point in your journey, you hit the brick wall of reality.

I have definitely hit that brick wall of reality and am finding it painful. Sophia is eleven and in grade six. There are moments when she seems like a 'typical' eleven year old girl. Sophia knows all the words to any Selena Gomez song, she wants to wear 'big' girl clothes, paint her toe nails. She wears deodorant, has her first bra and definitely has eleven year old girl emotional break downs!

Sophia loves to help out in the kitchen and goes shopping with me, following the grocery list with determination. We have real conversations about what kind of vegetables we need for dinner and what apples are our favourite. She can choose between cheddar or mozzarella, cold ham or turkey. Sophia loves to read the ingredients in the food we pick out and fervently announces to anyone walking by the percentage of sugar indicated on the side package.

In these moments walking up and down the aisles, I have shameless optimism that my daughter will grow up and develop into an independent, self reliant woman. That she will have completed her education, have a good job, a social life, and share her home with close friends/roommates. That she will manage her own bank account and perhaps, fall in love, have children of her own.

Slam! There is that damn brick wall. OUCH! It hurts...

Sophia is estimated to be about the developmental age of a four year old. I would say it rings true in that her favorite show is still Barney, and she laughs uncontrollably watching Sesame Street on her iPad. We still have to cut up her food, bath her, and there are moments like tonight at dinner, when she really does not understand the context of the conversation. This typically leads to her brothers laughing and Sophia sitting there with indignation, thinking she knows the answer and is right; a blend of the eleven year old girl and a developmentally four year old child.

Sophia is still so very much infantile. Her emotional maturity is that of a two year old and she still requires so much assistance, twenty four hours a day. This is an aside to the comprehensive medical care she requires; the injections every three hours, the round the clock medications, the skin care, the assistance she needs physically to complete so many basic tasks like bathing, dressing, going to bed, even needing assistance walking up and down stairs. *Note, Sophia ended up in emergency the other day when she fell down a flight of stairs and suffered a major concussion when in the care of someone else who didn't hold her hand.

The worry, the angst, the fear of her every day never mind her future, hangs over my head like an anvil.

No one can look into your eyes and assure you everything is going to be ok, be alright. Because the reality, that friggen brick wall is right there in front of you. You try to blast your way through, ram it over and over, try to climb it even. And time and time again, you are met with the cold hard truth that when you have a child, are a parent of disability, that there just may be a line in the sand...that the wall isn't going to move. It is there to stay.

That isn't to say you can't make a wonderful garden around it, that you can't create beautiful graffiti on it's cold grey. That others can't come to the wall and sit and enjoy it with you, your child. Because you can...and for your own emotional well being, and for the quality of life of your child, you need to.

Helen Keller said, "I seldom think of my limitations, and they never make me sad. Perhaps there is a touch of yearning at times; but it is vague, like the breeze among flowers."

It is something I have yet to learn as a parent of disability; to only yearn for what Sophia can do, will do. And not think of limitations, not feel sad. For me, that breeze comes in wind storms, still.

Yet, at the end of the day when I am getting Sophia ready for bed and she tells me exactly how many days are left before a special occasion, or in the morning when she proclaims as usual, that it is going to be a sunny day because she can see that one tiny crack in the clouds...that storm settles into a breeze and I know I am among a flower. It feeds my shameless optimism.

Sticks and stones make break my bones...

2011-11-17T14:17:00.000-08:00

But words can never hurt me.

I used to chant that when I was younger any time I was being teased or bullied, or one of my brother's was being, well, brotherly. It is something we most often associate with childhood and children.

Lately, it has appeared in my adult life and in particular, my business life. I have found myself quite regularly reciting this saying in my head while dealing with some sort of conflict or another.

Naive as I am, I really truly believed that even in business, people would be nice, respectful, kind to one another. I knew there would be conflict, such is the nature of life. However, I never really thought that maliciousness and down right dirty play would be found within a business community, especially a business community that specifically deals with social change and nonprofit. But, it does...

This year, in particular, I have had a few experiences that have left a sour taste in my mouth and have me reflecting on if I could have done anything differently and why I ended up in the situations I did. And naturally, wanting to ensure I would not repeat myself.

My first a-ha moment came when I asked on my Facebook page how do you weed the good ones from the not so good ones. Vanessa LeBourdais from DreamRider Theatre eloquently answered, 'intuition'.

Eileen Caddy says "cease trying to work everything out in your minds. It will get you nowhere. Live by intuition and inspiration and let your whole life be Revelation."

I have to admit, looking back, my intuition was definitely telling me something was not quite right, or to pay attention, do more investigation. But in typical martyrdom, something most social entrepreneurs suffer from, I ran right into the situation full steam.

The other thing I realize is that ego plays such a part of our lives and even more so in business. Darren L. Johnson, coach and author of Letting Go of Stuff, says "anytime there is a struggle between doing what is actually right and doing what seems right, then your ego is interfering with your decision." Wow, how true is that? I have experienced this myself a lot and can now keep check when I am doubting what 'seems' right versus what is 'actually' right.

According to Evan Carmichael, a business analyst, "53% of business people estimate ego costs their company 6 to 15 percent. 20% of business people say this cost ranges from 16 to 20 percent." The costs of ego are high.

Don't get me wrong, I believe strongly we need ego and I see in my thirteen year old son a healthy dose of ego that propels him to achieve academically and in sports.

Evan has three keys to developing a balanced ego and I agree completely and have even been using one of the terms, humility, with my children to keep their egos in check.

Humility
Curiosity
Veracity

The third and last thing that will help me and it is something that again, came from the wisdom of Vanessa, is forgiveness. That though conflicts may arise, intuition may be muted, egos may lack humility, in the end, forgiveness reigns. It is a pivotal moment when you can forgive someone who has wronged you, real or perceived. It is definitely something I am not perfect at and probably the most difficult part of my own journey, yet, recognize it is there and exists for purpose.

So while sticks and stones may break my bones and words can never hurt me, they do...and they will. And I will try and keep the words of William Wordsworth in mind as I move along this journey, "faith is a passionate intuition". Or for you other 80's people, the words of George Michaels may resonate, "you just got to have faith, faith, faith".

I have faith that through listening to my intuition, keeping my own ego in check and learning forgiveness, life will be far more satisfying and successful both personally and professionally.

Global Currents evolves into Full Web Development House

2011-11-04T08:42:00.000-07:00

Press Release: Friday, November 5th, 2011

Global Currents evolves into Full Web Development House:

Global Currents, the leader in web-based fundraising solutions, announces its evolution into Full Web Development and Support. Over the course of the last two years, we have found our clients requirements have changed in that organizations, both not for profit and for profit, are looking for web development that both informs and engages their constituents. This requires a more robust IT team with a significant acumen for complexity and the ability to provide ongoing support.

This means, in addition to continuing to provide our full suite of fundraising tools to compliment your existing site, we now offer a full spectrum of web development and support. Your website is the gateway to your organization. Many times it will be the first step a potential donor takes to find out more about your cause; or it will be how an engaged citizen will learn how to get involved. Most importantly, it can be the tool that helps you fulfill your mission.

Development is only half the story; how you maintain, grown and support your existing framework is equally as important in your technology plan, and a crucial part of what it means to have a successful website. There is no such thing as 'set it and forget it' when it comes to your website and Global Currents has the support systems to help you get the most out of your investment.

While we continue to partner and collaborate with the many skilled web developers and designers in the community, we have internalized the majority of the process to provide more cost effective and efficient service.

We encourage you to visit our website, www.globalcurrents.org, to meet our growing team. In particular, Sajeev Kanesanathan, who has been with us for the past four years, the last two as our Chief Technology Officer. Sajeev brings comprehensive experience in the ecom world and has a penchant for developing programs that require complexity and customization.

We look forward to working within your budgets to provide what we know to be exceptional web development and ongoing support through an extraordinary team who understand the unique challenges of not for profits and the charitable community.

Contact us today for all your web development needs.

Bev

Super Size my Fat Head

2011-10-31T18:53:00.000-07:00

I have been struggling with my weight now for probably close to five years. I have gone through this before; once pre puberty and again after each pregnancy, three so far. Previously, all I needed was a quick fix of exercise and making better choices of what I put between my lips. This time around, at 41, it is a struggle, a huge, big, miserable struggle.

In my world of social change I come across a lot of do good'er vegetarians, healthy eating experts, exercise gurus and the raw diet prophets. It can all be incredibly daunting and down right confusing. Who do you believe? What regime do you follow? What IS best for your body and overall longevity?

I decided to do my own research. As a result, I saw Super Size Me, the 2004 independent documentary film by Morgan Spurlock. Morgan's experiment was to eat McDonald's and only McDonald's for 30 days and mimic the daily physical activity of an average American. For those of you who haven't seen it, you can guess that by the end of 30 days, Spurlock gained excessive weight, his health was compromised, he had high cholesterol and psychologically he was feeling depressed and withdrawn.

Ok, so stay away from fast food, McDonald's. We have all heard for the past 30 years to stay away from high fat and drink skim milk, avoid anything with fat in it. Tick.

Well, then along comes Fat Head, another independent film that is the anti thesis to Super Size Me. Tom Naughton's comedic documentary argues against Spurlock's experiment claiming the numbers just 'don't add up'. Naughton even goes as far as to call the 'lipid hypothesis' a crock of bologna.

So, high cholesterol doesn't cause heart disease and eating fat is actually good for you? Studies have shown that to be true. Check out Dr. Malcolm Kendrick's research if you don't believe me. There are even suggestions that the ADHD epidemic is because we have deprived our children of the necessary fat they need for brain development. Our brain is, you guessed it, fat!

It gets even more complicated or informative, depending on where you are standing. I highly recommend you watch Dr. Robert H. Lustig's talk Sugar: The Bitter Truth. Lustig indicates that the global obesity epidemic is directly linked to our over consumption of fructose and under ingestion of fiber. His presentation is fascinating and even debunks the standard equation of calories in (consumption) versus calories out (exercise) results in weight loss. Oh my, Jillian and Bob must be rolling their eyes!!

You can appreciate why I am somewhat confused. There is so much information out there, all from supposedly reputable sources, all supposedly experts in their field.

My good friend and someone I admire a lot, Tricia Sedgwick, from Seeds of Plenty and The World in a Garden, has been a tremendous support to my family and I. She is a nutritionist and a gardener. She educates adults and children alike on the benefits of healthy eating predominantly through growing your own food. Thanks to Tricia I had a bumper crop of cherry tomatoes, zucchini and lettuce this past summer.

Tricia has been instrumental in my personal learning growth of harmful and helpful foods. Initially, I ended up with very empty cupboards and fridge thanks to her! I learned that guava syrup is a natural sweetener, that olive oil needs to be stored in a dark bottle, and that even our packaged herbs and spices are processed in ways that are not healthy. Do you realize that any house built before 1975 probably has no pantry? Reason being, is we never used to eat so much packaged and processed foods. Have you seen the pantries we have in new houses? They are bigger than the size of our fridge.

My take away from my initial research:

Fresh is good. The fresher your food, the less hands that have touched it, the better.

Fat isn't necessarily bad for you. Our body and our ancestry have needed fat in our diets since the beginning of time and it isn't necessarily the devil.

Fructose IS bad and the devil. Stay away from anything that has fructose in it, which is pretty much most packaged foods, even breads. Try and read the ingredients and again, fresher the better.

Find an 'expert' you trust, hopefully someone you know and short of that, contact my friend, Tricia. She will give you the goods on anything you have to ask regarding food, how it is packaged, where it comes from and even better, show you how to grow or make it yourself.

My next stage? Exercise and our bodies. Can't wait!

Stay tuned!

How do you do it? Defining 'it'

2011-10-20T18:40:00.000-07:00

I have written before about the question that I get asked a lot in reference to running a business, parenting three children, tending to a home and of course, caring for a child with special needs. And I am sure there are many of you that relate when asked 'how do you do it?'. However, I have to wonder if anyone really knows what 'it' is?

'It' for each one of us parenting, or tending to someone who has any kind of need is so vastly different. Caring for an aging parent, is different than caring for yourself when you are sick, and is different still when caring for a child who has a need. Our 'its' are all different, unique to our own circumstances. And none really less or more, just different.

I thought I would share what my 'it' is tending to a child with a life limiting illness. Some of the pictures I am about to share may be disturbing, or perhaps, disrupting of one's perspective of my 'it'.

Our day begins at 5am, when I am up giving Sophia an injection. Keep in mind, these injections occur every three hours, around the clock. So in theory, I was up at 2am as well.

At 5am after Sophia's shot, I tend to go back to bed but most mornings lie there semi awake, going through the task list in my head. By 6:30am I am wide awake and the morning hurricane of three children and working parents begins.

For Sophia, herself, her starting gate begins at 7:00am. I get her up, or at least, try to wake her up with kisses and good mornings, to which she will either respond by putting the blankets back over her head or exclaiming as she looks out the window, "Look, Mamma, it is going to be a sunny day!", even if it is pouring with rain.

I wash Sophia up either by giving her a quick rinse in the shower, or with a wash cloth. Sophia is not 'dry' over night and requires the use of pullups and tenas. So, it is important to get her a fresh start.

Typically, by 7:30am, we can count on one of our nurses to knock on our front door and walk in. There was a time I used to worry about my morning hair, or the state of my house and would even get myself up, showered and dressed before they came. I don't do that as much anymore.

Our nurses prep all of Sophia's morning meds and help make her breakfast. They feed her in between packing up her lunch and snacks, meds, and extra formula for her day at school.

Sophia is excited about school and is always eager to get through the morning tasks and routines. She ends her pre school time hooked up to a mask with medication in it for her little lungs then brushes her teeth. She then waits anxiously by the front door for the school bus to come and pick her up. My UK nephews affectionately call it 'the block of cheese'.

Most days, Sophia is able to go to school where she enjoys learning, reading, sharing time with her friends and daily activities in the community. She gets tired and by the time she gets home and is dropped off by the cheese, we know we have a few good hours left before she crashes and burns.

Throughout her day in school, her little fingers get poked to test her blood sugar before every shot and meal or snack. She is constantly hooked up to her backpack which carries a feeding pump and some souped up formula mixture to keep her sugars stable. Toss in those three hour shots and six hour pain meds and she is doing more than reading, writing and arithmetic.

At home, we have the usual dinner time chatter a family of five can create. A lot of yacking, some 'eewww, I don't want to eat this' and a good round of 'is there any more?'. Ahhh, got to love boys.

By the time 6:30pm comes around, Sophia is exhausted. Though, if you ask her, she will deny it by saying "I'm not tired!" and forcibly raise her eyebrows and open her eyes wide. It has become a bit of a joke now.

And, like the morning routine, it is compiled of syringes, needles, masks, whirls, gigs, creams, gauzes, and of course, plenty of hugs and kisses.

In the course of one day, Sophia requires 8 injections, that is 2,920 needles a year, ten syringes of medication, 3,650 annually and between 8 to 10 finger pokes a day, again no less than 3,650 finger pokes per year. And plus some, should she become sick or require even the simplest of eye creams, or ear drops, antibiotics. Never mind the fact twice a week we have to change the needle catheter in her leg, and every twelve weeks the g tube in her stomach. Oh, and every ten days, the batteries in her hearing aides.

There is more, of course. 365 tenas, 600 2x2 gauzes, 4,200 test strips, 60 feeding bags, 45 feeding tube adapters, 75 insuflon catheters, 364 cans of pediasure, 72 cans of polycose...need I go on? I hope if I every forget a meeting or am running behind, or am late giving you something, you can cut me just a little slack?

So, when you next ask me how do you do 'it'. You have a slight inside loop on just what that 'it' is and all it entails not just for me, but for Sophia. And that is how I do 'it', because of this amazing little girl who wakes up in the morning and exclaims, even on the darkest days, 'Look, Mamma, it is going to be a sunny day!'.

Disability Revolution or Disability Revelation?

2011-10-19T09:22:00.000-07:00

There are times when I wish I could just put my head in the sand and ignore all the external noise of the world and it's problems. This past month has definitely been one of those times.

Every day for the past several months, those of us affected by disability, have

been bombarded with one hurdle or another, one exhausting fight after another; the controversy over the recent CLBC closures of group homes, with employment opportunities like the Ridge Meadows Recycling Plant being threatened, and well, yesterday...when the last brick on one of the most horrific crimes against people with disabilities fell.

I am reminded of a quote by Ernest Hemingway, "The world breaks everyone, and afterward, some are strong at the broken places".

I kind of feel that is where we are within the world of disabilities. With all the controversy, I felt like there was going to

be be a 'disability revolution'. Let's stand up in unison, wrap our arms together and storm the powers that be with our mandates, our agenda. Rah rah disabilities!!

Now don't get me wrong, I still believe we, as families, as communities need to convene our voices, our needs. However, I think we are more at the point of having a 'disability revelation' versus a 'revolution'.

The word revelation is defined as "something revealed, or disclosed, especially a striking disclosure, as of something not before realized." In a biblical sense, it is defined as when God disclosed of Himself and His will to His creatures.

All the media attention, all the outcry of the last few months means we, those in the disability sector, have been revealed. We have been revealed as passionate, capable, families in need, yes, in need.

We are at the broken places. Ministry leaders have been shuffled, the CEO of CLBC has been removed, and the bricks of Woodlands will soon turn to dust. It does not mean we are fixed, that the pain, the anger, the mistrust has gone away...but we are strong in those broken places.

We still need to convene as families, in community. We still need to develop innovative housing models. We still need to compensate those who have suffered at the hands of others.

We are at the broken places, but we are strong.

And in the words of Abraham Lincoln, "I may walk slowly, but I never walk backwards." Here is to moving forward, between the cracks, in the broken places to strengthen our world of disabilities and support those in need.

Global Currents: A pre Holiday Wave

2011-09-01T11:23:00.001-07:00

Hello, Beverley here, the Founder of Global Currents; Cause Driven Platforms for Cause Driven People.

I am touching base with local organizations and partners prior to the upcoming big give season to re introduce ourselves, connect and offer our support. We serve nonprofit organizations and socially responsible corporations / individuals who require access to online fundraising tools. As many of you know, we are a local, values based company and our story can be found here.

We have been really busy this year with our re brand and building out new tools to help you engage your constituents; both donors and third party fundraisers. If there is anything I can do to further your initiatives, please don't hesitate to ask; email me personally.

Here are four examples of Global Currents fundraising platforms. Two are examples of our Pier to Peer system, a great third party fundraising site that can be branded either for the actual campaign or the organization and even a corporate partner. And two are utilizing our Pipeline API, a geek term for accessing our eCom system that is used for more custom needs.

The great thing with our Pier to Peer system is that it can easily be customized for any campaign or needs you have. We've got a super solid "core" feature set but can add specifics when / if you want them with ease and affordability.

Septembeard.org (API custom)

charity.givecentre.com (Pier to Peer demo)

chefs.givecentre.com (Pier to Peer live site)

http://www.specialolympics.bc.ca/ (API custom)

I would love nothing more than to support an organization that provides support and resources to those in our province. Some of our clients include Greater Vancouver Food Bank Society,

Burnaby Hospital Foundation, Special Olympics BC, and Canuck for Kids Fund.

Looking forward to further dialogue and connecting again. One of our Ambassadors may be calling in the near future to check in and see how we may be of service to your organization.

Kind regards,

Bev

--
Beverley Claire Pomeroy
Founder, CEO Global Currents

Cause Driven Platforms for Cause Driven People

Phone (604) 648-9428 ext. 102
beverley@globalcurrents.org
Twitter @beverleypomeroy

YWCA Vancouver Women of Distinction Award Winner 2011 (Innovation and Technology)
Vancouver's Top 40 Under Forty Winner 2009
Stevie Award Top Canadian Entrepreneur Finalist 2009

Biological Genocide: How Eugenics is making a comeback in the world of Disability

2011-08-23T21:44:00.001-07:00

I have had three children and with all three have gone through the mandatory triple screening process that our physicians tuck into a whole pile of prenatal requisitions; it can usually be found before the HIV form, after the ultrasound and blood glucose screening.

And to be honest, I don't think I even blinked an eye when the doctor explained, in brief, that the triple screen tested for genetic abnormalities including Down syndrome. Well, of course, it did. That is something I needed to know, right? Having a child with Down syndrome seemed like the worst fate, how was I going to raise a child with Down syndrome? Yes, please test me.

Twenty years, three children, two special needs kids later...and I can't imagine what my life would be like if I had been able to do prenatal genetic testing for autism or any kind of chromosomal abnormality. I know my life would be different.

The Globe and Mail posted a story on Monday titled 'Deselecting our children'. The article is in reference of Danish headlines to 'make Denmark a Down syndrome-free perfect society' by 2030.

In doing some research, I have found a number of articles and references and most use the term 'eugenics' in reference to this kind of prenatal genetic testing. Eugenics 'is the self-direction of human evolution'. Eugenics lost it's early 20th century popularity when it became associated with Nazi Germany. Eugenics, in my opinion, is a modern day biological genocide.

Dr. Gregor Wolbring writes a great series called The Silenced Targets. He calls eugenics an 'animal farm' philosophy where 'some are more equal than others'. "The community of the 'disabled' argues that testing for disabilities, diseases and impairments will increase prejudice against people who are labeled as such. How do other targeted groups feel? Many argue that sex selection lowers the status of women, while selection of sexual orientation would contribute to discrimination against lesbians, gay men and bisexuals.'

In Dr, Wolbring's paper, it suggests that 'eugenic decisions stem from socio-economic context and personal or family circumstances, not from the disability or disease or gene 'defect'.

Another article by Ruth Hubbard on Prenatal Testing and Disability Rights also suggests that this kind of testing does not lie in the disability itself, or prejudice from such or even about "the child at all, rather it is about how one imagines one's own life from that moment onward. And, just as the decision to abort any pregnancy does not reflect one's attitude toward people or family life in general, but only toward one's own prospects at that moment, so it is with the decision not to continue a pregnancy, predicted to end in the birth of a child with a disability one is not ready to countenance at that point."

I guess what I am trying to say, and what many of the critical thinkers out there are indicating is that the decision to have prenatal testing, to abort a child with a disability or known genetic abnormality is not up to the scientists who are recklessly producing technology to facilitate such decisions, but up to individuals, oh err um PARENTS... who choose to utilize the technology and make decisions based on their social norms. This includes disability, disease, gender, perhaps sexual orientation, and oh, wait, what is next...blue eyes, blonde hair, or perhaps, black hair, brown eyes...long legs, intelligence, artistic, athletic?

Where do we draw the line? As Dr. Wolbring asks "Who decides what is good for mankind?"

I did not ask to have children with special needs, with disabilities, with life limiting illnesses. And it isn't easy. Each and every day poses it's own challenges and I know our future will be difficult, different.

But having these children in my life has given me so much more than I could ever have expected. I have learned patience, compassion, tolerance, developed courage I didn't know existed. My children have impacted community, enhanced the lives of all those around us.

How is that NOT creating a 'perfect society'? That IS a perfect society...at least in my book.

The 'Informal Institutionalization' of People with Disabilities: Part Two

2011-08-20T09:59:00.000-07:00

The other day I wrote a passionate blog regarding the recent closure of a group home in Richmond. The story has become controversial, not only in the media, but in my life as well.

I live in the world of disabilities, maybe not from a bureaucratic, institutional model, but from a real life, hands on experiential world of disabilities. I am the mother of two of the 697,000 people in British Columbia that have disabilities. Yes, 697,000 people...in our province alone.

After I wrote my blog I received a number of phone calls and feedback, that while everyone agreed what was happening to the four adults living in the home, with the home closure, was horrific, that there was another side of the story. There actually is more than two sides, there appears to be a varied amount of opinions out there depending where in the disability sector you sit.

The group home in question is serviced by the same company that owns the actual home, they are under different names, but they are one of the same. This implies double dipping on part of the service provider / home owner and well, this private company is making money off of disabilities.

Looking into this further, though, DDA, who also services homes in Richmond, was told they must reduce the operating costs for a staff residential home so the budget complies with CLBC funding guidelines. If the service providers fails to do so, the contract is terminated, and put out for tender to others. And in some cases, it means individuals move to another home.

So whether you are a private service provider or an agency like Developmental Disability Association, the reality is, CLBC thinks service provision to people with disabilities can be done for cheaper, less. This can and does, has, compromised the quality of care residents receive.

I am a home owner, I have three children, two of which have disabilities, but even without that experience, in the 20 years I have been parenting, not much has become cheaper! In fact, if you look at the latest release from the Consumer Price Index consumer prices rose 2.7% in the last 12 months; primarily gas, and oh yea, FOOD.

So I am not sure how asking service providers to reduce their fees is in any way reasonable for CLBC to do in our economy. That would be like me asking my staff to do the same work for less pay. Ummm, they would all be bolting for the door.

I still argue that we have to start listening to the reports we have been compiling and not merely asking service providers to reduce their fees, or cost of serving people with disabilities but looking at alternative methods for housing, for servicing the 697,000 people in our province alone.

I am reposting the links I had in my original post regarding the research and recommendations for housing in our province for those in our disability sector. I know from my own perspective, my two children will more than likely live with me for many years until, or unless, a better model of housing exists. Ahhhh, adding that to my list...

In the meantime, the four adults that are now having to relocate are the victims of a system that isn't working, that doesn't work, and I challenge the decision makers involved to do the right thing and allow these vulnerable people to simply stay in their 'home', a home they have had for 15 to 20 years.

Don't we ALL deserve that? And until we honor and respect people with disabilities fully, and their families, we have in existence an 'informal institutionalization' of people with disabilities occurring in our province.

The 'Informal Institutionalization' of People with Disabilities

2011-08-16T11:51:00.000-07:00

I am up in arms, I will say that right off the bat, before you read any further. Day after day, night after night, I am watching stories on the news, reading articles in the newspaper of how families of disabilities, and those who have them, have to fight...fight for their fundamental human right and their Canadian right for access to healthcare, for a home, for the simplicity of dignity, citizenship.

More and more I am coming to the conclusion that if you have a disability in Canada, you are a second class citizen. And in some cases, like this story, you don't even have citizenship. A group home in Richmond is being closed down because their contracts have been 'terminated'. Terminated by CLBC, this group home has had some residents call it 'home for 15 to 20 years!!

The reason for the contract with the home to be terminated, because "Carla Thiesen, CLBC director for the Fraser region, admitted CLBC wanted the company that runs the home to do it for less"

The service provider refused to do it for less and while I don't have all the details of what 'do it for less' means, I am not sure in today's economy we can do anything for less, much less provide group home support with an already 'hack and slash' model of developmental disabilities support in communities.

Here is an excerpt from a letter that was forwarded to me and sent to media:

In a report prepared by the BC Non-Profit Housing Association Research Department in 2006, targeted to explore housing options for developmental disabled adults in BC, the report revealed that there were 20,130 developmentally disabled adults in the province of BC in 2006. In addition, there were another 1175 adults with developmental disabilities on a wait list to be placed into housing.

You will see in the CLBC report and Minister Bloy's response that the percentage increase in adults qualifying for Community Living funding is increasing at about a 5% on average rate each year.

In addition, the Minister has indicated in his letter to Jane Dyson, a provincial advocate, " I (Minister Bloy) would like to emphasize that there are no forced moves out of group homes. Some group homes may close due to people aging and individuals requesting different housing options in their communities". In fact management and staff were told that the Williams Road Group Home is closing and that transition plans need to be compete on all four residents by the end of August for a qucik move before the house sits in October.

There are a number of documents that have been done in recent years around housing for those with disabilities.

We can sit here and debate what is the right model for housing, what options are the most financially viable. The debate will continue for years to come even as new models around shared housing / co-housing begin to arise from countries like the UK and Australia.

At the end of the day, it is about respecting the wishes of those who are affected by a disability and the desire of their families to ensure they are safe, cared for. Which is what the Williams Rd home was doing for the past 20 years for the residents that call the house 'home'.

Residents and staff were notified of the termination on August 12th by the house manager.

We may have terminated formal instutions in our Country but learning of this story makes me realize we have developed something I am calling the 'informal institutionalization' of people with disabilities in our province by the mere fact CLBC can come in and yank people out of their home with a few weeks notice. Appalling.

Please forward this blog and the article to both Minister Harry Bloy and the opposition critic for Community Living Nicolas Simons

You will be dead before 45

2011-08-13T19:43:00.000-07:00

Those words have reverberated in my head for the past few weeks, 'you will be dead before 45'. I just turned 41...

Now, no one can predict when someone is going to die exactly, and there isn't a definitive date circled on my calendar like May 23rd, 2014. The words were more or less uttered to me as a wake up call, and well, I heard it LOUD and CLEAR. Dead before 45, are you kidding me?

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art of my issue is weight, of course, and with a BMI of over 30 I am considered 'obese', not 'overweight' but actually obese. Tough words to swallow never mind write openly on a public blog. According to HRSDC, 24% of Canadians are obese and 35% of Canadians are overweight. Not really the kind of popular club I had envisioned I would belong to when I was in my 20's.

I have always been athletic, despite struggling with weight for the majority of my life. And depending on pre puberty, or post pregnancy, I have always gone up and down on the scale and it just seemed normal and natural. And I'm not the only one rowing in that boat.

However, the last few years have been an incredible struggle, more than I have ever experienced before. I recognize it is an increased sedentary life, working like a dog, eating out far too much, and lack, yes...LACK of any form of exercise in my world. Toss in aging and voila.

Yet, the risk to my life is more than weight. It is increased stress and worry of being a parent, a parent of special needs children no less, and this year, dealing with the sudden death of my father. Add typical household stresses, a career, and no offense to the one I love, a relationship to nurture, it adds up. As my therapist says, I am "stepping on the brake and the gas pedal all at the same time".

Like most women I know, we are the care takers. We spend our day and quite often, our nights, tending to everyone around us. We do this at the demise of our own 'self'.

In my case, the overlap of 'life' with 'obesity' puts me at an increased risk of heart attack or stroke, Canada's leading cause of death. Now, I know, in theory, what I need to do to reduce that risk; exercise, eat better, reduce my stress.

I had the privilege of spending this past Friday at the Power of Women event here in Vancouver. It was a great event, a stadium filled with women and incredible speakers.

Loretta Laroche was so funny and her take is quit your bitchin and get on with it. Miss Loretta, while having me in stitches, would like us to not focus so much on our external landscape but on our internal landscape. And naturally. Let nature take it's course, our bodies are supposed to go through menopause, suppose to dry up and that is perfectly natural. Ok, check, that seems reasonable.

Suzanne Somers, on the other hand, was all about the supplements. That we need to balance our hormones using bio-identical hormones and try to keep our body at it's prime age of mid 30's. I totally admire Suzanne for what she has gone through, and true enough, she looks great, is totally happy and has a hot looking 74 year old husband!

And Ellen Degeneres, well, she believes it is all about love and as long as you love, have love, are loved, love in return, it is all good. I got that one down pat!!

But I left melancholy, full well knowing I had to do 'something', but what and how? Now what?

45 is a little too close...I feel like I am looking down the barrel of a gun. I don't have a clue where to turn to for what will work for me. And what will work for me? We all lead different lives and one plan or one method isn't going to fit for all.

Writing this particular blog, in many ways, is my call for help and/or advice, support. We all need support in our lives. And I am incredibly guilty of a:) not admitting I need help and b:) actually asking for help.

So, I am admitting and asking for help...and at 45, I would love nothing more than to throw a big, huge, raucous party in favor of life, health and happiness. Loretta with her big gaffaw belly laughs and Suzanne, with her forward thinking ideas and Ellen, with all her love, are totally invited!

When the system works, and why

2011-08-01T19:43:00.002-07:00

I have written a lot this past year on the 'system', and it seems like such a riptide; once you get caught up in it, the harder you try to get out, the more likely you are to drown.

I have spent the last nine days at BC Children's Hospital in a health care setting where systems seem to prevail in abundance. My youngest, Sophia, has gone through surgery to alleviate compression on her spinal cord that was impeding cord signals, the pathway from our brain to our body. Despite the surgery being planned, there were a lot of unexpected experiences. For one, she had originally been scheduled for scoliosis surgery lower down on her back. However, an MRI showed a more significant issue of spinal cord compression. Two, you can never ever be prepared for your child's surgery completely.

It has been an emotional time. Between lack of sleep (I slept in my car in the parking lot one night, in a lawn chair the next), not eating properly (the fresh salad bar and wrap station close down in the summer), and trying to pacify Sophia through her pain and discomfort (three IV's, a central line in her neck, catheter, an incision down the back of her neck, and convincing her to wear a neck brace), day nine has me feeling like a 'donkey on the edge'.

Sophia's medical condition is complex. In order for Sophia to have this surgery, several departments had to be involved, and had to work together. Beyond orthopedics, and anesthesia, we had to have endocrine, respirology, cardiology. Never mind for the surgery itself, the number of nurses, doctors, technicians involved were many. I went into the operating room with Sophia prior to her surgery, until they put her to sleep, and the volume of equipment in that room was substantial.

It took them three hours to prep Sophia, put in the central lines and position her perfectly before the surgeon could even touch her.

After the surgery, walking into ICU, the ability for our nurse that night to manage the systems involved in Sophia's care, post op, again, were substantial.

The word system is derived from the verb sunistemi, uniting, putting together. And I don't think Sophia's surgery would have been as successful without the very systems I sometimes complain about, existing. Each department has a system in place that provides a certain amount of continuity and processes in order to keep a patient safe.

The key for me is the word 'uniting'. And the systems I am praising are less about bureaucracies and processes per say, and more about the people involved. The reason our experiences have been good and why the system, this time around, worked, was because of the people involved.

Our surgeon was amazing, his team more than competent. The equipment used, instrumental. And the post surgery care has been the most impressive with our orthopedic team sharing openly with us everything they did and being incredibly attentive to Sophia and our needs. Our nurses have all been attentive not only to Sophia's needs but the needs of our family. We have had child life in to provide arts and crafts and we have even had a therapy dog named Rocky come and sit on Sophia's bed and make her giggle.

Much like conventional systems, the system worked for us this time because there was the ability to have open dialogue, to be prepared even for the unforeseen, in creating an environment for our family, for Sophia to feel safe, heard. And the system only works well, in my opinion, when people are involved...people who care. And in our case, this was evident from the moment we stepped into the hospital.

Authentic Leadership...

2011-07-14T15:51:00.000-07:00

To coin a phrase from my dear friend and colleague Tana Heminsley...authentic leadership.

It is something I am struggling with and maybe I need to capitalize both words, or better yet...capitalize the entire phrase AUTHENTIC LEADERSHIP.

Quite clearly Tana lives those words, encourages them and believes "There is a calling in the world today, for leaders globally to bring authenticity (strength of character, self-awareness and ethics) and emotional intelligence to their way of being. When paired with technical and professional excellence, authenticity and emotional intelligence provide leadership and business advantages for the 21st century."

Strength of character, self-awareness and ethics all seem like a given in our social change sector. However, I can't tell you how often I have come across just the opposite. Or maybe it is just the streams I have found myself in lately and I am disheartened.

To be truly authentic, I am learning that we need to reduce our own ignorance. In the book I am currently reading, How to See YOURSELF as you Really Are by His Holiness the Dalai Lama, His Holiness talks about 'cyclic existence'; some levels of mind which we normally identify as correct are actually exaggerations of the status of persons and things that we create trouble for ourselves and others.

And that 'ignorance keeps us from seeing the truth, the fact that people and other phenomena are subject to the laws of cause and effect...'

I would argue that to be an authentic leader, you have to work to overcome the natural propensity for humans to be ignorant and as such, critical thinking is crucial. To not depend on our senses and intuition but to utilize them for critical thinking and assess the status of persons and things authentically, wholly, completely.

As I work to be an authentic leader I am reminded that it isn't only managing the behaviours of those around me, but it is also being aware and managing my own.

When I looked up the word 'authenticity' it is ironic that it has two entries on Wikipedia; authenticity (the word itself) and authenticity (the philosophy). One component of the philosophy states, 'authenticity is one way in which the 'self' acts and changes in response to these pressures.'

It brings me right back, full circle, to both Tana's philosophy for leadership and the Dalai Lama's ideals. I am not perfect in either philosophy, however, the past few months have given me pause and I am encouraged even more so to work towards a leadership model of authenticity so that the work I am doing in this social change sector can have the best impact on our communities.

Civil Rights Now!

2011-07-07T09:08:00.000-07:00

As a parent of children with disabilities, we are always fighting; fighting for our kids to be integrated, fighting to have our children to be educated, for support resources, for equal access, for housing.

I am tired. After twenty years with my son, and the last ten duplicated with my daughter, I am tired, exhausted and even on some days, exasperated. That was until I saw a posting on my Facebook page this morning. Susan Moore, the president of Bell Alliance Transitions, a company that provides Bereavement and Life Management Support here in Vancouver, posted a link on her Facebook page about a presentation occurring today at Kwantlen Polytechnic. Her comment on the post said 'if you or a loved one is affected by a disability, this is a must attend presentation'.

So what do I do? I click...and meet, virtually, Paul Caune, Executive Director of Civil Rights Now!

Paul Caune 's story is remarkable. He was born with Muscular Dystrophy and seven years ago became ventilator dependent. Paul is 43 and I highly recommend reading and sharing his story and experiences of someone who lives with a disability each and every day.

The remarkable part is that Paul works tirelessly as an advocate, speaking out about the atrocities of our current institutionalized thinking of disabilities. I awoke this morning, not just awoke from the sun coming up, but really woke up my tired and weary parenting bones and am fueled by the injustices that Paul's story shares. One mini documentary in particular shares the stories of two other people, who's experiences in our provincial care are shameful.

This past year, the UN ratified a Convention on the Rights of Persons with Disabilities, the UN.

Over and over and over again, the Convention states..."reaffirming...the need for persons with disabilities to be guaranteed their full enjoyment without discrimination", "recognizing the need to promote and protect the human rights of all persons with disabilities, including those who require more intensive support", "concerned that... persons with disabilities continue to face barriers in their participation as equal members of society and violations of their human rights...", Recognizing that children with disabilities should have full enjoyment of all human rights and fundamental freedoms on an equal basis with other children..."

This is a UN ratified Convention, and yet, our own province, our own country, ranked one of the highest places to live in the world, still allows our children with needs to go uneducated. Allows our person with disabilities to continue to be informally 'institutionalized'. Allows our seniors to be exposed to abuse by 'facilities' of care, and to continue, despite the UN's Convention "Highlighting the fact that the majority of persons with disabilities live in conditions of poverty, and in this regard recognizing the critical need to address the negative impact of poverty on persons with disabilities", to not allow people with disabilities full economic opportunities nor recognize their economic value in communities across our country.

The past few months I have had the privilege of being the Director of Development for the PLAN Institute on Caring Citizenship. I have been exposed to story after story, and I have also been exposed to the great work PLAN has done over the last twenty years to raise the profile, the status and the values of people with disabilities and to recognize a network centric model of care, where families first, people with disabilities first, reigns strong.

The very last point in the UN's preamble is "Convinced that a comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities will make a significant contribution to redressing the profound social disadvantage of persons with disabilities and promote their participation in the civil, political, economic, social and cultural spheres with equal opportunities, in both developing and developed countries,".

And I am grateful for the likes of Paul Caune, of PLAN Institute for Caring Citizenship, and to be wrapped into a world that is thinking outside the box to do exactly what the UN's Convention is articulating very very clearly...

I am awake...are you?

I have fallen for the new Hierarchy

2011-05-30T14:34:00.001-07:00

I have recently met, virtually, Krista Flint, from Inclusive Humanity and while reading her latest blog, The Best and the Brightest...A New Hierarchy I realized I had fallen, and fallen hard.

In her blog, Krista admits she "desperately worry that we continue to measure value, worth, and meaningful participation by that same old tired measuring stick “how close are you to being like me – how close are you to almost not having a disability”. Wealth, power, beauty, independence, autonomy… all of the qualities traditionally important to us."

Ahhh yes, fallen I have. My eldest child, Brandon, has Asperger's and has just turned 20 and something Krista said struck a cord, "how close are you to almost not having a disability".

This past six months Brandon has been attending, full time, a cognitive learning school. For anyone who is familiar with Asperger's, cognitive learning has been touted as a method to increase a person's brain capacity and in some respects, reduce the 'asperger' diagnosis. In fact, it was suggested that three to four years of full time cognitive learning would actually eliminate Brandon's diagnosis and he would be 'normal'.

Here I thought that was a good thing. But after reading Krista's blog am I doing Brandon an injustice? Am I doing society an injustice?

Don't get me wrong, I want Brandon to have the best life he can have, and be the best he can be...but I have to tell you, I have been stressing out over his school for the last month. One, it is incredibly expensive, as are ALL and ANY specialized programs like this, even EIBI, ABA therapies are over the moon.

Two, are we focusing less on their existing capacity and putting too much focus on their 'potential'? Ironically, I don't worry as much about Sophia's capacity to be 'normal' but I definitely use that as a measuring stick for her 'success', as well.

Because of Apserger's, Brandon can sit down at a piano and play anything, and I mean anything. He can pick up a guitar, a banjo, even a mandolin and play any song he hears. Because of Asperger's, Brandon has an innate attention to detail. Because of Asperger's, Brandon is a great conversationalist on war ships, Canadian history, theology and every four years, politics. Because of Asperger's, Brandon covets my Dad's old navy sweaters and wears them every day reminding me how much I loved my dad, even in his passing.

When do we stop trying to 'fix' our children with special needs and just let them be? And does trying to 'fix' them take away from trying to fight for the support they deserve, for the recognition of their value in society? Are we actually doing an injustice?

I wrote a blog earlier today on Moral Courage...and maybe that is what moral courage is? Trying less to 'fix' someone and appreciating who they truly are?

Moral Courage in the World of Disability

2011-05-30T12:25:00.000-07:00

I was online doing some research when I came across a face that I recognized. I didn't recognize the name, well...because I only knew her as 'Pinky' in the 80's. Irshad Manji was two years my senior growing up in the lower mainland and she was the first ever class president I had. I was in grade 8, she was in grade 10. And yes, we all called her Pinky back then, something I am sure she would like to forget.

Irshad has gone far from our days in junior high; she is an internationally best selling author and Oprah's magazine has given Irshad the first annual Chutzpah Award for "audacity, nerve, boldness and conviction."

I soon learned that Irshad is the Director of the Moral Courage Project at New York University. I assumed that with Irshad writing more in the Islam sphere and political arena, that the Moral Courage Project was along the same lines. I was surprised to learn that the Moral Courage Project is to develop new leadership, it "teaches that rights come with responsibilities, that we are citizens rather than members of mere tribes, and that meaningful diversity embraces different ideas and not just identities."

My world right now seems to be immersed in the world of disabilities and I began to reflect how Moral Courage plays into that world of disabilities.

Janice Formichella writes "Why is it so hard to pin-point moral courage? Perhaps it is because moral courage is more than mere bravery. It is more than joining a movement or marching in a demonstration. Those with moral courage bring the movement to their own communities and explore how we are perpetuating injustice locally. Moral courage requires one to act even in the absence of a movement."

As we build movements and we create new innovative technologies to propel those movements, we can't forget that moral courage requires one to act even in the absence of a movement. It is a parent fighting for their child's right to an education, for their special needs son to be included in community activities, for an adult child's right to live in a safe and loving group home without prejudice, without bullying, without loosing their citizenship.

Moral courage in the world of disability is standing up for the rights of our vulnerable society and not sitting down until they are fully recognized for their contributions, for their values, for their right to have a good life.

What does moral courage look like to you?

"Diapers are for babies!"

2011-05-21T19:23:00.000-07:00

"Diapers are for babies!" Sophia yelled at the top of her lungs.

Her pull ups and Tena soon followed as she hurled them out of her room across the hallway until they finally slid to a stop in the middle of the living room floor.

Sighing, it had come to this. Sophia is three months shy of being eleven years old and I know, diapers, something most mothers of 'normie' children don't have to contend with. When your child has a special need or has lost some function, or sense, their lives along with yours change dramatically.

Sophia is fine during the day for the most part, although she has had some embarrassing 'accidents' at school. Nighttime is a whole different story. It could be the amount of medication she is on at night that knocks her into such a deep sleep, it could be loss of bowel/bladder control, or it could be the fact she is hooked up to a myriad of equipment. Between feeding pumps, sometimes SAT monitors and oxygen, her bed can be somewhat constricting.

But this is a first. Sophia has never acknowledged or indicated she felt that diapers are for babies. How do we 'insist' on her wearing something at night while also respecting her sense of self and her self esteem?

Sophia, in many ways, is typical of her age and peer group. She loves music, Hannah Montana, Jonas Brothers. She likes to wear particular clothes, especially if she sees her friends wearing a certain outfit or 'brand'. She is hitting pre puberty and has what I understand to be normal emotional outbursts for a girl.

So how do we deal with the other not so typical issues? Like...diapers. I did a Google search, of course. :) And actually couldn't find anything on this topic. I found a lot of websites with diaper supplies and a few sites that had tips for potty training a child with special needs. But nothing about a child loosing bowel and bladder control.

Sophia's self realization that diapers are for babies completely contradicts her physiological need to wear diapers.

As Sophia looses various functions; hearing, eyesight, physical capacity...I am learning that it is less about her waking up wet, as an example, and more about her emotional well being. Her feeling 'ok' with herself, diapers or not. And that means a lot of patience, a lot of hugging and a lot of discovery.

I grabbed the diapers off the floor, went and consoled a weeping pre teen girl and, for now, have managed to convince her to wear a diaper tonight. I suspect tomorrow we will go through the same thing and this will soon become just another one of our night time routines along with brushing her teeth, something she hates to do as well! See, typical...

Transmedia versus Social Media

2011-05-17T15:10:00.000-07:00

Nicholas Kristoff announced that his #1 best seller, Half the Sky, is being produced into a PBS primetime show. In his Facebook announcement, he used the term ‘transmedia’ project.

Hmmm, transmedia.

According to the Internet bible Wikipedia “transmedia storytelling is a technique of telling stories across multiple platforms and formats” and is used by ‘mass media’ to develop ‘mass franchises’. Most of the examples precede the age of the Internet so I found it interesting that Mr. Kristoff used the term within the confines of his Facebook page. Example given where Teenage Mutant Ninja Turtles, Muppet Babies; where a television show became merchandize, became a movie, became a staple in every child’s seasonal wish list. Ahhhh Barney, I don’t miss those days.

It made me think, though, about the current terms we have for multiple media usage in the current wave of social media and how, if any, is it different from ‘transmedia’. Social media are media for social interaction, using highly accessible and scalable communication techniques. Social media can take on many different forms, including Internet forums, weblogs, social blogs, microblogging, wikis, podcasts, photographs or pictures, video, rating and social bookmarking.

How is social media any different from transmedia?

According to Sieze the Media and their diagram, it appears to me that it really isn’t any different. Transmedia is just another term for social media, or is social media just another term for transmedia?

Transmedia is a format of formats; an approach to story delivery that aggregates fragmented audiences by adapting productions to new modes of presentation and social integration. The execution of a transmedia production weaves together diverse storylines, across multiple outlets, as parts of an overarching narrative structure. These elements are distributed through both traditional and new media outlets.

My favorite bit, “the online components exploit the social conventions, and social locations, of the internet.”

Whether we use the modern term of ‘social media’ or the old school term of ‘transmedia’ in our socially conscience world the bottom line is we need to integrate multiple uses of media and weave our vibrant stories into these accessible adapted tools available to us right at our finger tips.

Lookout Society - Solutions to Homelessness

2011-05-04T18:03:00.000-07:00

I am so lucky my job provides the opportunity to truly discover some amazing organizations in our community. Today, I had the privilege of meeting Karen O'Shannacery the founder and the very hands on Executive Director of Lookout Emergency Aid Society.

As their name suggests, Lookout provides housing to the shelterless and homeless. Note, 'shelterless' is before 'homelessness'. That is because Lookout is the last resort for many people.

I didn't know what to expect when I was invited to take a tour of the Yukon Shelter. I had walked past this shelter for years and it never once dawned on me it was a shelter. It is a well maintained building, the stairs in front are covered with trees, and maintained bushes. There aren't any cigarette butts strewn on the sidewalk out front, not a lot of people loitering around. All stereotypes even I had in my head.

Inside was even more impressive. It was super clean, and the staff were all so attentive and so willing to share their philosophies on supporting the independence of their clients. And that is key, independence. Lookout's philosophy is that "securing appropriate housing is the first and most essential step in achieving responsible independence."

Yet, Lookout doesn't just secure housing, they provide a wide range of support including identifying an individuals needs that may go unaddressed or be part of gaps in other services. Their emphasis on connecting to community allows individuals in their shelters to grow beyond the shelter walls and return to community in whatever their capacity may be. Lookout also provides employment training and has developed several successful social enterprises including a culinary training program on the North Shore, and a really cool program called Cycleback Art Outreach (CAO). CAO was created to promote Lookout's bicycle repair training program and had a total number of 29 workshops with just under 250 participants.

I can't thank Karen, who founded the organization after she had experienced homelessness herself, and Karen #2, the development expert, for sharing their time and stories. I also can't end this without sharing their Youtube video Who The Homeless Are and to pay homage to an amazing staff support worker, Robert, who shared with us stories of hardship AND success he has experienced in his role. THANK YOU!

Life On Purpose

2011-04-27T08:02:00.000-07:00

It has been a while since I have posted this video and being in a place of reflection lately, felt the need to post and reconnect with 'purpose'.

My father passed away a month ago tomorrow. I was there with him for his days and his last breathe, and the experience has left me raw and wonderous all at the same time. We walk through life sometimes quiet, head down and purposeful. And then something happens to jolt us awake and our purpose suddenly becomes loud and more meaningful.

As long as we put one foot in front of the other we are in action and we serve purpose. Be it as a volunteer at our child's school, helping our elderly neighbor, raising money for our local hospice, or simply doing our part for the environment. We are in action...

As I put one foot in front of the other, knowing my oak tree of a father is no longer here, it allows me to feel the privilege of being in action every day. I encourage you all to do the same. Click to play...

Press Release: We're LIVE! PINC GIVING IS NOW GLOBAL CURRENTS!

2011-04-09T03:18:00.001-07:00

Press Release: April 7th, 2011 Vancouver, BC

PINC GIVING IS NOW GLOBAL CURRENTS!

Cause driven platforms for cause driven people.

We are pleased to formally introduce the evolution of Pinc Giving: Global Currents. The name change ushers in a new suite of donation solutions for non profits of all sizes, a renewed commitment to our clients and industry leading innovation in a new peer driven fund raising system.

If you are a regular on our site, or this is your first time here - welcome. We've been working behind the scenes for over 6 months now, transitioning the company from Pinc Giving to what you see today - the hub for non profit giving solutions.

Why the change?

Pinc was born five years ago as a single site where people could easily and safely donate to causes that mattered to them. The company quickly grew to provide the free ‘Donate Now’ button, the charity gift cards and our API. While at the core, they all still exist, we’ve risen to the challenge of developing new and innovative technologies to meet the complex, ever-growing needs of our client partners. We needed a new organizational structure, brand and ultimately a new company to support this growth. The heart of the company remains the same, while our reach has grown tremendously. For more on why we were founded in the first place - click here to read our story.

New innovations!

Our vision remains to be an innovative leader in developing and providing cost-effective online donation platforms of all sizes. To this end, we’ve revamped our original Donate Now product and introduced two amazing new products to the suite. Our Pier to Peer product is truly revolutionary, and our branded donation pages are a great way for organizations to leverage their unique branding embedded on a donation form.

Poke around on the site and be sure to give us a call with any questions. We are so thrilled to be able to usher in a new wave of giving and want you to be a part of it.

How do you do it?

2011-04-03T04:58:00.001-07:00

As a parent of a child with special needs, ok, in my case, two children with special needs, a lot of people ask me 'how do I do it?' Or, 'I don't know how you do it' on a regular basis. It is such a hard question to answer and my response comes back in the form of another question...'Why do I do what I do?'

There is no doubt 'how' I do it, is because of 'why' I do it...for my children. As a mom, we love unconditionally. Well, other than keep your room clean, set the table, take the garbage out and don't hit your brother. We DO love unconditionally.

When our children are young, we don't mind wiping their bums, their snotty noses, letting them eat off our plates, sitting up all night when they have the flu. It is that instinct to care for, to nurture that bubbles its way to the surface even more when you have a child who has special needs.

My eldest turned twenty yesterday, so I have been a mom of someone 'special' for a long time. Along the way, I have learned some simple survival tips.

Take time for you - this could mean a bath and a good book, a weekend away with girlfriends, a routine coffee night, a run, a walk or simply tucking yourself away in your room to talk to your best friend on the phone

It is ok to be 'off' - we all have bad days, parenting a child with special needs means our bad days can be really bad. And it is ok to have bad days. We don't need to put on a brave face all the time, we are allowed to curl up in the corner and cry. We are allowed to admit we feel defeated or helpless. Let those around you know when you are 'off' and try to balance it out with taking time for you

Be an advocate - there is nothing better than taking your experience and making a positive impact on your community. Volunteer for an organization that aligns with your child's needs or your family values, join a local board, speak to your local or national politicians on the kinds of services we, as families, need. Some of the best changes that have been made at a political level have been because of committed grassroots advocacy. It can provide you with a sense of purpose in what may otherwise be a sense of loss or helplessness

Seek Support - the best thing we can do as parents of children who are 'special' is seek the support from those around us. It can be family, friends, other parents who have similar children or circumstances. Maybe a professional organization that supports your child's needs. Surrounding ourselves with like minded people who understand can some times, get us through our darkest moments

We are parents AND people. We are more than our children's disease or disability. And yes, it can be all consuming.

At the end of the day, we love our child, no matter what...and that is the 'why' of 'how we do it' when someone stops and asks you.

The Sublimity of Hope

2011-03-03T07:05:00.001-08:00

Not very often does something stop me in my tracks, I mean STOP me in my tracks, and question the concept of hope. Working with so many nonprofit organizations, hope is bountiful, is rich, is in the water supply more often than not. Why else would individuals and groups of volunteers endure mountain peaks at sub zero temperatures, or long arduous runs, countless hours collecting bottles or living in third world countries for months on end?

For the sublimity of hope.

I went to a routine six month appointment with my daughter today expecting well, a routine appointment. It was anything BUT routine. We expect Sophia's disease process to be unusual and expect the unexpected. However, I was not expecting the hour long conversation that would ensue.

Most of you know Sophia has been waiting for an MRI and a month ago we had the good fortune to have that MRI done at BC Children's Hospital. We were treated exceptionally well, all the staff were amazing and Sophia was well taken care of before, during and after her sedated MRI and CT scan. We did spend a day or so in ICU after wards, but again, had a good experience.

Today we received the results of Sophia's scans, along with some other testing she has been going through the last month for her kidneys. Needless to say, the results were unexpected; her kidney function significantly impaired, and the MRI /CT scans showing a severe abnormality with Sophia's upper spine, spinal cord. Her entire spinal skeletal system is fused, even her little lungs show collapse, more than likely due to the condition of her spine fusion and her severe kyphosis.

We don't know what all this 'means', and who knows if even our medical professionals really know what it all 'means'. But we do know Sophia is at risk within her spinal cord, in the same area Christopher Reed was injured. And we do know Sophia's kidney function is low, really really low and because of her complicated little self, is not a candidate for transplant.

On the drive home my mind wondered to all the issues discussed and brought me around to hope. For ten years, Sophia has fought against the odds, our whole family has fought against the odds. We have held on to 'hope', hope that Sophia would be ok, hope that the medical community would catch up, hope that our family would remain intact emotionally through this process...hope, hope, hope.

Alexandra Dumas said "All human wisdom is summed up in two words - wait and hope"

And today, walking into my home, Sophia singing to Barney I am met with the sublimity of hope...and if nothing else we have the sublimity of hope, that Sophia will be happy, our family will be together and each and every day, we appreciate ALL we have and that we have hope, for one more day...one more moment, as sublime as that may be in the midst of today.

Thinking like a Movement, Acting like a Community

2011-02-02T00:22:00.001-08:00

I had the privilege of attending PLAN Institute's annual Thinking Like a Movement Retreat last week at the beautiful Painted Boat Lodge in Pender Harbour. The last couple of days I have been contemplative on how to share the wealth of information learned, and the enormity of ideas shared. How do you wrap ALL that up in a blog post?

This year, Dr. Frances Westley from the University of Waterloo and the Social Innovation Generation (SiG), was our educator. SiG's focus and Dr. Westley's expertise lie in social innovation that has 'impact, durability and scale' across Canada. "Social Innovation Generation (SiG) is a group who believes that serious social problems can be solved. SiG is a collaborative initiative seeking to address Canada's social and ecological challenges by creating a culture of continuous social innovation."

Dr. Frances shared her Complexity Approach to Change and Transformation theory and how it links to Hollings' adaptive cycle. Now, I am far from a scholar and academic, however, Frances detailed the four phases of innovation and I could identify myself or others I know in my organization that fit within one if not more of those four phases. Personally, I identified strongly with the first phase of Creative Destruction, much to the chagrin of my colleagues. Others identified with the next phases; Exploration, Exploitation and an important last phase of Conservation. I encourage you to watch the full video presentation.

Vickie and Al then shared six patterns they've experienced in their journey with PLAN and Tyze.

Thinking and acting like a movement

Framing

Convening

Do It Yourself Public Policy

Harnessing Market Forces

'Who' is as important as 'how'

By the end of the retreat, it was clear that resilience was the key to any successful social innovation. Frances defines resilience as 'transformation and persistence working together'. And one key understanding that all social innovators need to appreciate is social innovation does not 'change' systems BUT works to reduce barriers for system change...we will shift the terrain not fix it.

Thinking like a movement really leads to acting like a community.

Dear Larry Gold, all I want for Christmas is my daughter to be pain free...

2010-12-17T01:19:00.001-08:00

My Dear Santa letter to Larry Gold…

This time of year most children are writing their lists to Santa, asking for bikes, ipads, a new doll. This year, my daughter is writing to Santa asking for a new spine or at least a fixed one so she could be pain free.

Dear Mr. Gold, I value and admire your leadership role as the President of BC Children's Hospital and Sunny Hill Health Centre for Children. It is through great leadership that I believe our communities will sustain and flourish.

As a fellow leader in our nonprofit / social sector, it disheartens me to have to write you a letter regarding BC Children’s Hospital and the inappropriate length in wait lists for our Province’s children; in particular, the unacceptable length for a sedated MRI.

Not only am I a recognized and awarded leader in our community, I also happen to be a parent of a child with a life limiting illness. My daughter, Sophia, has been receiving care from BC Children’s Hospital since birth, when she was born in 2000 with a rare chromosome deletion that has encompassed all her organs and systems. Short of oncology, and a few other departments, our family receives services from almost every department at BC Children’s Hospital.

Sophia’s disease process is complicated and overwhelming at best. Over the last several years, some of her progression includes increase in seizure activity and spinal kyphosis that has progressed to over 65%. The severity of Sophia’s kyphosis has caused Sophia to experience increasing pain in her back and shooting down her legs, to the point of now requiring prescription narcotics every six hours to abate that pain. We have even had to be ambulanced to emergency as her pain caused her undue stress and hyperventilation, making it hard for her to breathe.

In the fall of 2009, we were seen by orthopedics and were told Sophia would require an MRI before any decision could be made to treat her kyphosis. Due to the complexity of Sophia’s health issues, she requires sedation – no short feat as she is tube fed, hyperinsulenimic and is unable to fast.

It has now been a year, Sophia’s pain meds are increasing in dosage, her pain becoming more to manage and intolerable for her to endure daily. Through our pediatrician, Dr. Prisman and Madison Clinic, a Canuck Place Children’s Hospice joint BCCH program, we were told that an MRI date may be set in the spring of 2011, and even then, there is no guarantee.

I am not just writing on behalf of my daughter, but for all the children in our province who are enduring pain, discomfort, increase in symptoms or loss of physical capacity all due to unrelenting wait times for MRI’s and other such scans.

Sophia’s life, for one, due to the unacceptable wait lists, is at risk. She is not the only one. I have spoken to orthopedics, to various departments and even to Madison Clinic and the message has resonated loud and clear. These words have tirelessly been droned in my ear…”The system is failing you, the system is failing your family, your daughter”.

I have heard about the shortage of anesthetists, I have heard about the lack of trained staff, I have heard about the inability to purchase additional equipment. Have you heard my daughter screaming in pain in the middle of the night? I have, for close to two years.

I have no issues sharing these images with you and the leadership at BC Children’s Hospital.

I am no longer willing to keep quiet about this issue. I see my daughter suffering every day and it is unacceptable. I talk to other parents who feel just as I do. We, as a collective, want wait lists to be diminished, for our children to have the opportunity to receive the necessary and in some cases, life-altering imaging they require to live a happy, contributory and in my daughter’s case, a pain free life.

I welcome an opportunity to discuss the issues further, to aide in necessary conversations to support BCCH, our children and our families who rely on your services. We rely on your strength of leadership, of operational responsibility, of outreach to the funding agencies and internal infrastructure to ensure our children are not being put at risk.

Mr. Gold, you are the system for BC Children’s Hospital and as its President, I am reaching out to ask for your help and your support to ensure not only my daughter, but all children are expedited through the lengthy MRI waitlists.

As a huge community advocate who tirelessly works towards a sustainable and just society, I am not one to create controversy but strive to collaborate for positive outcomes through critical thinking, community engagement and best practices.

I am hoping my advocacy ends at your door…and Sophia can get the much-needed MRI that will provide us with the knowledge to treat her issues and give her already complex life, some quality.

Dear Santa…