Showing posts with label BLOOM. Show all posts
Showing posts with label BLOOM. Show all posts

Monday, June 29, 2015

Last call for the BLOOM survey

Complete our BLOOM survey by June 30, and you'll be entered in a draw to win a framed Stephimal by autistic artist Steph Coveart (above).

The joy that bounces from Steph's drawings of cats and dogs—each coloured in bright, bold markers, floating on white space and with quirky facial expressions—has attracted the attention of artists and animators.

Thank you to everyone who's already taken five minutes to tell us what they like, and don't like, about BLOOM, and how we can do better. Help us push our respondent voices higher! Louise

Friday, June 12, 2015

Share your thoughts on BLOOM

Help us BLOOM brighter by taking a few minutes to fill out this survey.

Respond by June 30 and we'll enter you in a draw for a framed Stephimal by autistic artist Steph Coveart (above). You may remember this piece we did on Steph, who has a business selling her art.


At BLOOM with Holland Bloorview, we're dedicated to bringing you the latest views and news on parenting children with disabilities and disability issues, culture and more. We appreciate your time and contributions to BLOOM—whether via reading, commenting or sharing—and want to ensure that we're providing the best experience for you and your family.

Hop over and tell us what you think. Thanks! Louise

Thursday, September 18, 2014

Help us BLOOM



Please check out the fall issue of BLOOM.

I'm sharing my editorial below, which is about an amazing opportunity to donate to BLOOM and see your contribution matched by the Coriat family, doubling the impact. Please take a moment to read and share widely. Thanks! Louise

BLOOM is the voice of parents raising children with disabilities—a voice that’s missing in many mainstream parenting forums.

Now Canadian parents David and Lynn Coriat challenge you to raise that voice so that more families here and around the world can benefit from BLOOM’s online community of information, inspiration and support.


Make a donation to support BLOOM by December 31, 2014 and the Coriat family will match your gift, dollar for dollar!*

Who are the Coriats?

They’re parents of a child with a disability, like you and me. For the last three years, David and Lynn have championed BLOOM with a substantial donation that funds the blog, print magazine, BLOOM speaker series and e-letter. Their vision and generosity have allowed Holland Bloorview Kids Rehabilitation Hospital to lead the international dialogue on childhood disability, bringing our award-winning content to families and professionals everywhere.

David and Lynn believe in the power of BLOOM. Do you?

BLOOM is an international phenomenon. We have readers in 166 countries.

When parents visit the BLOOM blog or open our magazine, they see and celebrate families like their own. They feel less alone, more empowered. They get the best parent and professional advice and the latest on clinical and research advances. But most importantly, they’re united in an international community that speaks their parenting language. They feel heard and understood.

In this issue you’ll read stories from families in the UK, Italy, Holland, United States and Canada. No matter where you live, they will resonate.

Here’s how one parent describes the impact:

“Every issue makes me smile, shed a tear, write down an inspirational sentence or piece of advice or lead me to research a new product or technology. I love the holistic, family-centred approach…especially the fact that sibling issues are not ignored. The stories in BLOOM touch and change lives. What a wonderful gift.”

We’re asking for your support in order to reach more families with increased stories and content, meeting the needs expressed by our readers.
Please consider a donation now, knowing that the Coriat family will match your gift and double its impact!

Every bit counts!

With gratitude, Louise


*The Coriat family will match any donation to a maximum of $50,000.

To make an immediate gift online, please visit our secure website at:
http://hollandbloorview.ca/BLOOM

Tuesday, June 3, 2014

Filmmaker Kelly O'Brien on grief, siblings and honesty


A recent BLOOM night focused on filmmaker Kelly O'Brien and a screening of Softening, her film about raising her son Teddy, who was born with brain damage and a grim prognosis. 

Softening is a candid story about a mother's love and pain, a sister's magical bond, a father's joy and devotion and a little boy's experience of the world. This Youtube clip is a portion of an interview we did with Kelly following the film. 

A condensed version of Softening that focuses on Teddy and his sister Emma was posted on The New York Times. Thank you Kelly!

Monday, July 8, 2013

Families teach this OT student key lessons














Eric Smart (white shirt, back row, on the right) is an occupational therapy (OT) student at the University of Toronto and a familiar face at our BLOOM speaker nights. Eric says he gets more from hearing directly from parents and people with disabilities at BLOOM nights than “from textbooks and class lectures. The most meaningful lessons have come directly from the experiences, the honesty, and the hearts of BLOOM speakers—parents, children, an actor and actress, a business entrepreneur, a former Olympian and stepparent, and a parent author.” Here he shares five things he’s learned from family stories. Thank you Eric! Louise


Therapy needs to be balanced against family needs
In school we’ve learned that within our resource-constrained health system, therapy programs are primarily judged on whether objectives were met. Less attention is given to the process of "how" they were met. Through BLOOM speakers I’ve learned that if we look at rehab in a vacuum we risk delivering unintentional messages that a child is inferior and always needs to be improving; that they could always be a little “better” if they just did more therapy, even if that little amount took every bit of energy the family had left. I must keep my eyes, ears and mind completely open to families in case they choose to deliver the message that “Therapy is not right for us at this time.” 


Children’s rehab is not an exact science

The way a diagnosis is conveyed can hurt parents. In school I’m given textbooks and read about many conditions over the years. My knowledge is built gradually. Parents don’t have the luxury of learning about their child’s condition slowly. I’ve heard from speakers that when a diagnosis is made, emotions cascade in and create a world of uncertainty and confusion. 


I see now that part of my role as a therapist is to help parents navigate through a deluge of new medical terms and adapt to a new way of living. Many parents have described their devastation at the words professionals use to predict their child’s future abilities. Some parents are surprised when the predictions don’t come true. I need to remember that children’s rehab is not an exact science.

'The whole is greater than the sum of its parts'
I must be wary of viewing child clients solely as a set of distinct attributes of interest to health professionals. This doesn’t match the way parents view their kids. In school we’ve learned about family-centred care and how parents know their children best (obviously!). So naturally I feel the need to see children through their parents’ eyes if I hope to make a positive difference. 


This perspective makes me better understand why parents and clinicians alike question the tendency to plot and compare children’s abilities on a bell curve. These comparisons don’t take into account the complexity of a person and the unique life path they’re on and potentially lead to a focus on deficits. 

An OT may be pressured into viewing clients in terms of isolated abilities due to time restrictions and budget constraints. The old adage “the whole is greater than the sum of its parts” is an expression I can use to remind myself to never lose sight of the person in front of me.

Parents need time to be parents

At BLOOM speaker nights I learned that while I chose to be an OT, a parent of a child with a disability continually has new roles thrust onto their parenting "job description." They may become part OT, part physical therapist, part nurse, part social worker, part child-life specialist, part crisis counsellor, part case-coordinator, part educator. While I work 40-hour weeks, parents are working non-stop around the clock. This realization is humbling and puts my role as an OT in perspective. 


I will respect the days when parents tell me they don’t have the energy to educate me—one more professional in a long list—about every detail in their child’s long medical history. I will think carefully about recommending therapy programs that take time away from the limited time parents have to “just be parents” (not therapists) with their children. I must be hyper-vigilant of parents on the verge of burnout so I can encourage them to pursue respite and activities that will give them a break. 

Sometimes as a student I wonder if I have what it takes to become a professional OT, so I can only imagine how uncertain parents must feel as they take on the extra roles that come with parenting a child with special needs. I must never allow my recommendations to appear judgmental or to suggest that parents are not doing a good-enough job. 

I think parents need to be reminded that they are the most invested in their children and that they have a lot to teach professionals. I say this because my brother has autism and my parents have filled his life with such meaningful activities and social connections that I can only hope to come close to modelling what they’ve done with my clients one day.

‘There’s always something more I can learn’

Finally, these BLOOM nights have made me excited and certain that I will learn new lessons from each child and parent I work with in the future. Whether someone shares their personal meaning of vulnerability with me or demonstrates strength in ways I never could have imagined, I know these experiences will make me a better OT—bit by bit. 

I am thankful for the BLOOM speakers who so openly told their stories, and I will feel privileged to listen to the stories of my future clients' families.

The BLOOM talks have shown me that no matter how many years of school I attend, there’s always something more I can learn. I will never be an “expert.”

Now, as I get ready to start my second and final year of OT school, my goal is to become a respectful learner, fortunate enough to contribute the occasional word to the brilliant life stories being written and told by parents and children at Holland Bloorview.

Monday, November 12, 2012

Mommy blogging -- British style
















The Mumsnet BlogFest on Saturday drew about 300 mommy bloggers to London to talk about how blogging is giving a voice to women's issues and "recalibrating the power balance in the world of comment," said Justine Roberts, co-founder of the website that runs an umbrella network for bloggers.

In Finding Your Voice, Zoe Williams, a Guardian columnist and author of two parenting books, said she writes as though she's talking to someone she knows. "If you're expected to write to people you wouldn't want to talk to, it's hard to write. I think of talking to someone I know."

Rachel Cusk, an award-winning author of novels and non-fiction books, called on bloggers to "make contact with their innate authority" in writing about their lives. "If I was wondering about what people were going to think, or trying to mediate the reading experience, I wouldn't be able to be truthful," she said. And later: "Don't try to be somebody else, be yourself."

Panelists noted that it can take years to develop your voice.

In a session about how to handle negative comments from trolls, psychologist Tanya Byron spoke about needing to be prepared for criticism and insults when you blog under your name. You have to have emotional resilience that acts as a form of armour, she said. If you don't, it's better to write anonymously. One panelist noted that you write because it's the truth, not so people like you.

That said the panelists -- a number of whom write for major newspapers -- recounted how challenging it was to cope with hate comments and death threats that went far beyond the bounds of legitimate criticism. Most noted that entering into a debate with these trolls was not constructive.

Louise France, former editor of The Times of London' Saturday supplement The Magazine, spoke about immersing yourself in a publication before considering how to hone a pitch for a story that truly stands out. For example, while she wouldn't be interested in a story from the parent of a child who is bullied, she might be interested in the story from a parent of a child who is the bully -- and who can provide insight from that angle.

There was discussion about the importance of traditional publishing versus online publishing and how both can complement each other.

Mumsnet has led two recent advocacy campaigns. One was called the Campaign for Better Miscarriage Care and involved bloggers breaking the silence on their own miscarriage stories. The other was called the We Believe You Rape Awareness Campaign -- which included debunking myths of rape that lead victims to fear they won't be believed if they report the crime. I'm interested in finding out more about these campaigns and how their success might inform our efforts to raise acceptance of kids with disabilities.

When I asked about how we can bring child disability issues into the mainstream, Blogging Can Change The World panelists felt we had to be very strategic and specific in what we were asking -- versus a general request to increase visibility of kids with disabilities and their families. One suggestion was to align child disability issues with mainstream parenting issues.

The day ended with a talk by Caitlin Moran, author of How To Be A Woman and a columnist with the Times."Writing is about angles" she said, and finding takes on subjects that haven't been written about before. Ask yourself "Why am I writing this?" as a prompt.

She said writers often feel forced to have an opinion or come to a conclusion about a topic. Instead, she suggested simply describing the topic, or writing about your confusion over it. "Let information pass through you," she said.

Sophie Walker is a parent I met who blogs about raising her daughter Grace, who has Asperger syndrome, and her decision to train for the London Marathon. Sophie did this to raise awareness of autism and improve her health so that she could better support her daughter. Her blog grew into a book -- called Grace Under Pressure -- which was released last month.

Another mom I met is Hannah Postgate, who is about to launch a business bringing together products that support families of children with special needs. Her daughter Rosy has an undiagnosed genetic condition. Rosy and Bo should be off the ground in a few weeks. She plans to give tips on how to adapt products to meet specific special needs.

Check out the Mumsnet list of special-needs bloggers. Tomorrow, the forum is hosting a live chat with Edward Timpson, Minister of State for Children and Families, to discuss reforms in special education in Britain.

This is something I'd like to see us do at BLOOM, if we can figure out the technical side.

Thursday, October 25, 2012

Chat with us at Parent Voices










Come visit us at Parent Voices at Holland Bloorview on Facebook!

This is a place for parents of children with disabilities to ask questions, share practical information, discuss topics and support each other.

Where useful, we’ll offer expert advice on how to navigate the system and what programs and services are available at Holland Bloorview and beyond. We’ll also let you know about parenting resources.

Read our About section to learn more.

Please hop on over and "like" us and give us some help around medical jargon we need to simplify! Louise

(When commenting @Parent Voices, please use only your child’s first name and don’t share detailed information about your child or a health-care provider. We will remove negative comments about people or organizations)

Thursday, June 14, 2012

Six degrees of separation

















A weekend ago I walked into my regular Starbucks. A customer was talking to the barista and gestured to me. I couldn't figure out why. Had I done something odd? Did she know me?

Imagine my surprise when the barista said this woman, named Michelle, was paying for my coffee! She had attended our BLOOM speaker evening with author Amy Julia Becker and wanted to thank me.

We got to talking and Michelle told me about her awesome son Emerson, 4, above, who has a rare genetic deletion on chromosome 18. My son Ben has a genetic deletion on chromosome 8.

That Monday Michelle e-mailed me, identifying herself as the "Michelle from Starbucks."

This is a story about a trail of connections that never would have occurred without the Internet.

Michelle met me because she came to hear A Good and Perfect Gift author Amy Julia Becker at Holland Bloorview.

I connected with Amy Julia in 2010 by chance when I read an online comment she made on a New York Times blog about whether we should research a "cure" for Down syndrome. She wrote, in part, about her daughter Penny:

"It's hard to believe that she won't be able to solve problems or read literature. And yet it's easy to believe that she will rush to a friend, or even a stranger in need. Easy to believe she will bring joy and light and life. Can she live a full life without ever solving a quadratic equation? I'm pretty sure she can. Can I live a full life without learning to cherish and welcome those in this world who are different from me? I'm pretty sure I can't."

That comment resonated with me, and imagine my surprise when a few months later Amy Julia, who lives in New Jersey, posted a comment on BLOOM and I recognized her name.

Since then Amy Julia has written for BLOOM -- and written a book! -- and we've had a number of fascinating conversations about human value and what it means to live a good life.

Last month she was flying in to Toronto to do an interview about her book and came directly from the airport to speak to parents at Holland Bloorview -- including Michelle, who was able to speak one-on-one during the break.

Meanwhile, a couple of weeks ago, The Four Walls of My Freedom author Donna Thomson (also a recent BLOOM speaker!) posted about Positive Exposure, an amazing New York organization that promotes the beauty of children living with genetic differences. Donna linked to this Ted Talk by Rick Guidotti, the former fashion photographer who founded Positive Exposure and travels the world taking pictures of children with genetic syndromes.

I spoke to Liz Grossman, the group's program director. Liz's initial link to Positive Exposure was her 12-year-old daughter Talia, who has a syndrome called 18q-. Talia is now an avid blogger with an education program called PEARLS run by Positive Exposure. Youth with genetic anomalies blog about their lives and students in high school read their stories as part of a curriculum about genetic diversity.

My student Megan interviewed Liz and Rick for our upcoming BLOOM magazine.

When my Starbucks' friend Michelle mentioned that her son had a condition involving chromosome 18, it rang a bell. I remembered what Liz had told me about her daughter. In fact, it sounded like the same diagnosis.

So I asked Liz, who lives in New York, if Michelle could contact her. "Yes, please give her my email," she messaged back.

I passed Liz's contact information to Michelle and she wrote back: "Wow, I hope you enjoyed your coffee last week because it's clearly the best coffee I've ever purchased!"

The special-needs world is a small one, thanks to the Internet.

Monday, April 23, 2012

The Capability Approach

Donna Thomson, author of The Four Walls of My Freedom, speaks about how she adapted Nobel prize-winning economist Amartya Sen's Capability Approach to explore how people can create a life they value in any situation of adversity, including severe disability. Donna was part of our BLOOM speaker series and she wowed our audience. Thanks Donna! Louise

Tuesday, April 10, 2012

Author Donna Thomson speaks tonight!

I am thrilled that Donna Thomson, author of The Four Walls of My Freedom, is our BLOOM speaker tonight in Letting go: Find 'home' for your adult child (click on link for time and other details).

Here Donna talks about her book at the International Festival of Authors in Toronto. Hope to see you tonight!

Wednesday, March 21, 2012

Bloom speaker: Redefining success


Wednesday, March 14, 2012

Why do you read BLOOM?


















Nathalie Wendling, mom to Melanie and Tommy, sent me this lovely note:

BLOOM has helped me in ways that are difficult to explain. It has helped me understand myself better: my frustrations, my stress, my negativity, my jealousy, my worries, my exhaustion. Why we obsessively do all the things we do.

Reading about all these other parents with so much courage, strength and valuable advice helps me feel supported. As parents, we stress, looking for ways to improve our children's life with different therapies and new technology. Your blog has also taught me to stop and enjoy Melanie for who she is and her ways...I love Melanie's invisible friends and her pretend world. They make me laugh so much.

Thank you Louise...you have opened my eyes to a whole new exciting, fun-loving chapter. In this chapter we are going to enjoy Melanie as Melanie. I can't wait.

P.S. Melanie is not talking to Hello Kitty (see above). Apparently Hello Kitty said something mean to the Grinch.

Monday, January 2, 2012

A gift for BLOOM
















David and Lynn Coriat (parents to Jessica above) have donated $100,000 to BLOOM. I interviewed David to learn about why his family made this generous donation! David is executive vice-president and chief financial officer at Slaight Communications, an investment and entertainment company in Toronto. Slaight is a partner in
SiriusXM Canada. Covering the costs of BLOOM – which is mailed free of charge to families and professionals – is always a challenge. The Coriat’s significant donation will make both 2012 issues possible and allow us to expand into new formats – including a BLOOM speaker and video series. Thank you David and Lynn! Louise


BLOOM: What is your connection to Holland Bloorview?

David Coriat: My connection is my daughter Jessica, who has seen Dr. Wedge there on numerous occasions after surgeries. Jess has an affinity for Holland Bloorview and her eyes light up whenever she’s there. She’s told us a lot about what Holland Bloorview does for the kids.

BLOOM: Why did you decide to make this donation to BLOOM?

David Coriat: BLOOM offers parents a forum to learn more about other kids with disabilities and to learn about the environment as a whole – at a time when a lot of their friends and associates tend to move away from them because disability is still a stigma in our society. Parents of children with disabilities face challenges on a daily basis. What BLOOM does is offer a forum for learning and sharing and the comfort that “I’m not alone. There are a lot of people in the same situation.”

BLOOM: What have you learned as a father raising a daughter with a disability?

David Coriat: Our society still has a negative view of people with disability and our environment is not set up to nurture children with disabilities. Unless they’re fighters, these kids get buried in the system and shunned. When my daughter went through the school system, she was ridiculed. She has a strong personality and a tough skin, and was able to take it. But now I see her at 21 desperately looking for a job. She passes all the phone interviews because she has the gift of the gab, but the minute an employer sees her walker, the doors close.

BLOOM: What changes would you like to see to improve the lives of children with disabilities?

David Coriat: It has to start at the political level where disability is put at the forefront. And there has to be education at the school level, because kids are mean – and their parents are even meaner – when they see a kid with a disability. I think it’s going to take a couple of generations before kids with disabilities are accepted as part of the mainstream.

BLOOM: Is there anything else you would like our readers to know?

David Coriat: The key in my mind, for parents, is that even in your darkest day there is always a light at the end of the tunnel. There’s always a friendly shoulder or ear out there if you look for it – particularly among other parents who understand the challenges. And that is why I wouldn’t hesitate to support BLOOM. It provides a forum for hope and gives parents perspective.

Monday, November 21, 2011

Talking about limb difference


In the first of a series of BLOOM clips, Janelle Cherng talks about explaining daughter Gabi's limb difference in social situations.

In BLOOM clips parents and experts talk about childhood disability. Send us your ideas for future topics! Thanks, Louise

Thursday, November 3, 2011

Talk to me!

I'm keen to film and post a series of short video clips with parents talking on topics that matter to you.

What would you most like to hear another parent talk about?

Please let us know. Thanks! Louise

Monday, May 9, 2011

BLOOM one of best non-profit blogs
















BLOOM is named one of the nine top non-profit blogs by Mark W. Schaefer, a well known blogger at {grow}, social media educator at Rutgers University and author of The Tao of Twitter.

Mark partnered with  Helen Brown, whose company teaches non-profits how to raise funds, to "examine more than 250 blogs from some of the largest and most important charities anywhere. We looked for the blogs that were engaging an audience, offering superb content, and aligning with the organization’s strategies."

This is what Mark says about BLOOMThis blog brought tears to my eyes. If you’re a parent, it will probably have the same affect on you. Bloom is about parenting special needs kids. It isn’t fancy. In fact it’s just on Blogger. But what it lacks in sophistication it more than makes up in courage and heart. Writer Louise Kinross has something unique and personal going on here. She has nurtured an active, loyal community and with good reason … this is blogging at its best.

I am honoured that we are recognized here and thank you -- dear readers and writers -- for enabling us to grow a worldwide community of families and professionals who share the joys and challenges of parenting children with disabilities, talk frankly about difficult subjects and celebrate our children!

I hope this is a place where you feel heard and understood. Louise

Monday, October 18, 2010

Parents in the 'peg'

I'm at the Canadian Association for Pediatric Health Centres conference in Winnipeg, Manitoba. Yesterday was an all-day session with the Canadian Family Advisory Network -- parents from across the country who sit on family advisories at their hospitals. It was a fascinating day with many heartfelt firsthand stories of raising -- and sometimes losing -- children with disabilities or chronic health conditions.

I spoke about the BLOOM blog and we did a session looking at barriers and solutions to getting hospitals and family advisories involved in using social media.

I'm looking forward to connecting with more parents and perhaps recruiting a few to guest blog with us. Happy Monday!

Friday, July 30, 2010

Discharge day



Here's Ben and I waiting for his last physio session as an inpatient. Instead of complaining through every exercise, he laughed hysterically, giddy at the thought he was going home.

I'm taking a much-needed break for the next two weeks, but our amazing BLOOM designer Sara will be here to moderate your comments.

In September I'm speaking on a panel about how social media can be used to see through the eyes of the patient/family. Today I read that the Mayo Clinic had just opened up its very own Center for Social Media. Here, its medical director talks about how he believes social media will revolutionize health care by providing a new platform for patient voices and better connecting patients and professionals.

What do you think?

I believe there are many ways we could be using the BLOOM blog to better empower parents raising kids with special needs. In addition to having experts answer your questions, we could pose practical questions to our parent and professional readers and generate, through comments, your collective wisdom on a topic.

Ideas?

Friday, June 18, 2010

Louise joins the Circle of Honour



On Wed. night I received a Circle of Honour Award for advocacy for my work with BLOOM. The Circle of Honour is Holland Bloorview’s highest award for people who make the world a better place for kids with disabilities and their families. This award was very special to me because I was nominated by two parents. At the event they showed a video that included comments from a number of BLOOM readers. I wanted to share my speech with you.

I’m honoured and humbled to receive this award.

Katharine Harrison and Alison Bowen, the parents who nominated me, wrote about how the word advocate means: To summon a voice.

I’ve always felt that it was through my experience raising my son Ben that I found a voice I didn’t know I had.

It takes courage to parent a child with disabilities in a culture that still largely views disability as a tragedy.

And it’s because we’re determined, as parents, that the world see our kids the way we see them – that we become natural advocates.

But I think it’s fair to say that every person in this room is an advocate in the work they do to ensure that every child who walks through our doors leads a rich life.

There’s something truly unique about Bloorview – about the people who work here and our values – and I think BLOOM is a natural extension of that.

Our vision of possibility is radical in that it takes us beyond society’s limited definition of success to acknowledge the beauty and contribution of every child.

People here welcome diversity, they value different ways of doing things, they see opportunities that aren’t immediately apparent. Those qualities are remarkable and rare. We can’t underestimate their power.

I’d like to thank the leadership of the organization, our staff and our families for creating the kind of environment where BLOOM could thrive. I’d like to recognize Sara Purves, our designer extraordinaire. She’s created the kind of stunningly beautiful publication that our families deserve.

And I’d like to thank my Dad. He didn’t have a lot of experience with disability, but he taught me the value of every human life, and I think that’s why I feel so at home here.

Friday, January 29, 2010

What issues matter to you?


As the parent of a child with a disability or special needs, what type of stories or resources are you most interested in? Are there areas that you feel haven't received adequate attention or dialogue? Is there a taboo topic you'd like discussed?

Please help me ensure that BLOOM is covering issues related to parenting kids with disabilities that matter most to you as parents – and which can assist the professionals working with our kids.
Thanks! Louise