Monday, November 5, 2018

How To Talk To Parents

Parenting is freaking hard....

To add to the challenge, you are the parent of a child born with some sort of medical complexity or developmental disability. The idea you would exist as parent and as someone with an unofficial PhD is something you never expected out of life. Yet here you are being all awesome and stuff keeping your head reasonably above water. Chances are if you're like me, you've had to be a rather stern advocate at times for your child. You've had to develop a rather thick skin over time given some of the conversations you've had to have. You learn the system and the science while in the trenches, who can better understand your child than you?

In a moment of pure golden joy, you've discovered that parents like yourself all flock to social media to connect with each other. Your heart is just a little bit lighter in knowing that you're not walking this path alone. 

Like any other morning, you sit down with a cup of coffee and check out your Facebook news feed. Today is a little different in that you see... GASP!! Someone made a controversial post regarding something that extends beyond what you consider the norm in parental care.

In twelve years of parenting and connecting to a greater community of families online, I've seen this conversation take a few different directions.

"Let's not rock the boat...."
This stance can have multiple motivations really! In some cases, group admins have neither the energy or the willingness to facilitate controversial conversations that inevitably end up in drama. It's just easier to not talk about challenging subjects rather than allowing open space for them.

"Anything goes...."
These are social media groups that are open and promote an air of "inclusivity" and no judgement. It appeals to the sensitivity we parents are all challenged by. "We're all just trying to do our best." "What's right for your family may not be right for mine." Any indication of being questioned isn't seen as challenge but more as "bashing" a fellow parent.

"What starts, never finishes well..."
This is a version that takes two unique directions. In one scenario, some parent starts right out of the gate stating that the opposing side is flat out stupid and should get their children taking away. 

That's not a discussion, that's a match, gasoline and inviting others to watch the fire.

In other scenarios, the conversation starts off well but launches into hurt feelings because of course, we are always the right ones in the debate! Being challenged online does not sit well with some people even though many social media platforms were in effect created with the idea of creating social debate. Reading conversations in text lack nuance, things are misinterpreted... we don't know a fellow parents background and what brought them to this opinion. Someone leaves the group in some dramatic fashion. This inevitably brought us the social media term, "flouncing" which I think describes the dramatic flair of these exits to a T!

Recently I took an opportunity to take in Tim Caufield's series "A User's Guide To Cheating Death". Humanity's ability to tackle concepts like beauty, aging and death have created a culture of questionable treatments as we search to rationalize the things we don't have all the answers for.

In watching this series it began to give me pause to contemplate the complex diagnosis parenting culture we create. We are only now starting to acknowledge and research the caregiver experience. We see the statistics indicating higher mortality rates in moms of complex kids.





As I  have no magic answer for a fix of the system, I do think we need to begin to consider how we can as a parenting community begin to help each other. How we acquire knowledge pertinent to caring for our kids is a deeply personal affair. In some cases, we as parents are just so taxed and want to see an end to a particular challenge in our kids. Our online support communities have made impact for so many with far-reaching effects. I myself am not sure where my mental health would be without being able to connect with a much larger online community. At the same time, I do wonder how a largely scientific parenting profession gets away without having an ability to have healthy scientific discussions. Our ability to be mentors to one another is cut unfairly short when we aren't able to make space for discussing all the angles and in some cases dark corners of the overall parenting experience. In a world surrounded by some of the strongest advocates in the business, this seems to be that dusty corner filled with boxes that nobody wants to acknowledge. 

In a world that is increasingly resistant to science seeks answers in the natural or the alternative, we have an entrenched divide between families that we seem to either walk on eggshells over or reign fire and fury over the opposing side. 

Can we have successful conversations in the parenting community about topics we may disagree on?


I would argue that in fact we can have successful conversations. We just aren't well set up to have them or we just don't know how.
Nobody enjoys being wrong, it's not exactly something one goes out of their way to do.
So when posed with my example at the beginning of this post, I ask you what understanding of healthy discussion are you bringing to the table? Are you willing to create a compassionate culture of learning from one another? Are you cool with the possibility of being wrong on a particular subject? 
At the same time, parents have the capability to be such incredible innovators in the science of raising our kids. We are given the space to do so even more now with the advent of patient-oriented research. We owe it to our kids to be able to talk in a healthy fashion about all of the angles of our role. Sometimes that hits on some tough topics. It's time to dust off those dusty boxes in the corner and unpack some stuff. Even acknowledging those boxes exist is a step in the right direction.









Learn about a few concepts below on habits we often have in online discussions. Have you been guilty of any online? I know I have! 




This isn't your green light to just start bugging people at every opportunity now on social media. The key here is to start listening to each other. To speak to those your fellow parents in the trenches with compassion and an attempt to understand what brought them to their decision. And in kind, to genuinely listen to the concerns a fellow parent brings to you. In the end we can then encourage each other to take new information to our care teams and decide together what to do with this information. With that last effort, everybody wins.  



Friday, June 15, 2018

The CRPD and My Family

                                           



The following was a speech I delivered at Eleventh Session of the Conference of State Parties at the United Nations in NY. 

Thank you for being here this evening. My name is Rachel Martens and I am from Calgary, Alberta, Canada. Becoming a mom to a child with multiple disabilities presents a sort of duality in your identity. This duality has a system of priorities that at times works in tandem, and sometimes with one side taking priority over the other. 



Both sides of this dual identity have a stake in introducing my son today. Clinician Mom would tell you that this is Luke. Born with a rare chromosome disorder called mosaic trisomy 22 and he was born with a laundry list of associated diagnoses such as autism, cerebral palsy, poor growth as well as being nonverbal. Mosaic trisomy 22 as best can be determined with current data occurs in roughly 1 in 30,000 to 50,000 live births. It was only in 2013 that a published formal assessment of data determined that mosaic trisomy 22 didn’t follow the common trajectory of other diagnoses often associated with incompatibility with life, but rather falls on a spectrum of function and lifespan unique to the individual. In sharing my story, I often feel as though he was born at a time in transition in conversations on both medicine and disability. This is a young man who craves his own path on every level. I credit the work of multiple clinics at Alberta Children’s Hospital with the fact that Luke is still with us today. 



The other identity is known as just, well... “mom”. She would tell you that Luke is an almost 12 year old young man. For someone who is nonverbal, he gets his point across quite easily if he’s annoyed with you. He’s an active explorer who doesn’t let using a wheelchair get in his way of experiencing the world. He loves to play what he considers to be pranks on people and lives to laugh. Music has recently become another way for him to communicate with the world.



Starting out, I really won the lottery with our early intervention team of occupational, speech and physiotherapists. They saw a very angry child with a unique path of development. They came along side him and respected his way of thinking. They acknowledged his need for space and autonomy all the while working to create bridges towards trusting therapeutic relationships that helped him see the world is less of a scary place. All of this couldn’t have happened without a supportive Canadian framework of services that became a regular part of our home life. 


As Luke approached school age, I could tell his team was hesitant about his future. At the time, the best we could be afforded was a life skills class. None of us were satisfied let alone equipped to advocate for an education that better suited his list of needs. It was with that we decided to pick up and move to another province closer to family and a school that afforded him more opportunity to grow. Looking back I am fully aware that this decision to move was available to us due to a remarkable amount of privilege. Many families with complex needs like my son’s have the added stress of functioning in a support system that’s inaccessible due to diagnosis centric standards or don’t qualify because they’re considered not severe enough for intervention. 

In any case, parenting is a dance that is led by the child. The music is entirely their own, the partners change every now and then. And it’s an absolute thing of beauty to watch when each part is understood and works to support the artistry of the lead dancer.

I do a lot of looking back on the life of my family lately. What brought us to this point raising a young man who’s developing his own identity and engaging with the world, came with a recognition of his right to education and surrounding him with people who were open to communication and strategy in a system that supports the individual. The stories of Canadian families represent a broad expanse of experiences. But at the root of parenting a child with a disability I would argue we all carry a common system of goals for our kids. In 2012 two researchers at CanChild Centre for Childhood Disability in Hamilton, Ontario created a simplified explanation for parents of the World Health Organization’s International Classification of Functioning, Disability and Health (or the ICF for short) called the six f words in disability, which I believe reflects the spirit of the CRPD in the lives of families. A brief explanation is as follows: 

Function: I may do things differently but please help me try.

Family: Mine plays a supporting role in my life. Please give them have an opportunity for having a voice too, they’re my biggest fans.

Fitness: please help me find ways to keep healthy.

Friends: connections with others is important to my development. Please help me find ways to hang out with my peers.

Fun: fun and play is how I learn and grow. Please help me find ways to be a kid.

Future: I will grow up one day. Please help me find ways to be a part of the community.

It’s been my absolute privilege to share these words with Canadian families as a Parent Engagement Coordinator for CanChild and Kids Brain Health Network. I facilitate a social media based advisory network for families engaged and willing to collaborate in research. Stories according to researcher and author Brene Brown are in fact data with a soul. And at the heart of these stories we have seen the common thread we share in supporting the dance of our kids. We have spent the past few years getting to know what sort of connection we can make together in the creation of research with real life application and have seen the benefits of real time knowledge exchange in an era where science is making a deeper impact by taking our work to the people. It was through this online community that we collectively celebrated the implementation of the position of Minister for Disability and cast a vision towards the future. More accessible collaboration has the potential to engage with greater depth beyond the time restrictions of the clinic appointment and to notice the sometimes subtle nuances of child development through the eyes of the kids and the parents and siblings who know them so well. 

In my work in engaging parents, I see a generation of them who are seeking a way to step beyond both physical and mental stress. They see potential and carry ideas as to what would help create one amazing generation of kids. They mentor each other on system navigation on social media that in a way makes them well studied social workers for one another. When you invite researchers into this community as well, the combination of lived experience and scientific knowledge has the potential to create incredible outcomes.

I realize that engagement can’t always be logistically accomplished with a level of intimacy and conversation equitable to a family barbecue. But it’s this spirit of community that is already a uniquely Canadian quality. In order to realize the full depth and breadth of the CRPD and its function in Canada, this community of the mutually invested needs to be mobilized. 

If I were afforded an opportunity to provide insights into supporting the implementation of the CRPD for kids in Canada there would be a few things I would consider.

I would create an assurance that all voices count in the creation of new policy. That means creating population counts of all Canadians affected by disability including children and hardly to reach cultures. 

I’d consider seeking a rare disease framework and how it affects disability support system infrastructure as it affects 1 in 12 Canadians and 2/3 of them are children.

I would encourage more networking between the provinces regarding analysis of best practices for services.

I would seek to close the often considerable time gap between published research and its implementation into policy. And to educate families in seeing that their story has value in research and understanding that organizations like SPOR help in opening doors to collaboration with research institutions. 

Meaningful collaboration in improving the lives of kids has been tremendously therapeutic for myself. The knowledge acquired has trickled down into my parenting and helped me advocate for Luke with less conflict and more evidence basis. 

On days such as today, having an opportunity to speak on behalf of Canadian families is larger thinking than I ever could have imagined when I first became a mom. The video you saw of my husband and Luke is a snapshot of a moment where hearing a song from the soundtrack to the movie Moana seemed to unlock something in his mind that told him that this is the most beautiful song that has ever been created. If you aren’t paying attention while the song is playing, he will in fact either pinch you of take you by the face to remind you to share in his joy and live in the moment. It’s stories like these that drive parents towards being partners for change as it’s the energy with the potential to fuel the creation of great things. When we can support the rights of children, making memories like this as a family becomes a celebration of milestones that we can all share in and celebrate together. I for one cannot wait to see what we can accomplish as a country for our kids. Thank you for letting me share my family with you here today.


Saturday, February 10, 2018

Finding Community In Social Media: The Highs, The Lows and Questions Asked


Putting your heart out into the vast scape of the world wide web can be quite the task. The following is the script from a webinar I shared with a broad range of families from Canada to New Zealand. --February 8, 2018

"I must admit that when asked to put this webinar together, the idea was a little intimidating. I’m still working on my skills as a public speaker and find anxiety can get in the way a bit. With a cup of coffee in hand, I could feel the brain cells starting to function and I realized that with a webinar I’d be sitting in front of my laptop conveying my thoughts rather than in front of a large crowd. Well of course I said yes though I’m rather embarrassed it took me a bit to process that but I’m not much of a morning person. I suppose that came with age, and this crazy parenting life. (Not to mention a lot of sleep deprivation!) Back in the day, my brain used to be a well organized filing cabinet, I had clinic and therapy information mentally detailed in alphabetical order. Now it’s more like a sticky note potentially threatened by a puff of wind so my iphone is my personal assistant who smacks me in the head with frequent alarm reminders. So it’s by the power of coffee that I get things done!


Welcome everyone! My name is Rachel Martens and I’m from Calgary, Alberta. I’m mom to an extremely busy almost 12 year old boy who was born with a rare chromosome diagnosis called mosaic trisomy 22 who has associated autism and cerebral palsy. When I’m not busy keeping up with his insane level of energy, I partner with CanChild as a Parent Engagement Facilitator for their parents research group called, Parents Partnering in Research. I have a passion for supporting families in their parenting and health care experiences. Since the birth of my son, I have found an incredible amount of support over the years through the development of the world wide web and subsequently social media. The thing about webinars is so often the person you are listening to, well you don’t really have an opportunity to get to know them. I hope that this webinar provides to you at least a little window into my life.


In sharing something about community one needs to honor an important aspect to our contribution in a village of support and that is vulnerability. Pouring your heart out to someone is hard. Society demands small response data when we ask each other, “How are you?”. We don’t really have a strong dialogue for any sort of struggle in our culture. This makes it easy to find people who accept the pat answer of “I’m good!” and make those who probe deeper to be absolute treasures in the world.


'Don't focus on what she can't do, but what she can do. Like a boss.' -Lisa Thornbury
To say parenting my son has been a roller coaster ride doesn’t even begin to describe our many experiences as a little family. Life prior to parenthood had opportunities for doing respite for Child and Family Services and helping my mom in her daycare with many kids of varying disabilities. It’s different as the caregiver for when the experience is yours, the feelings are yours, well, it’s your world that changes. Navigating the perspectives of others when you’re first starting out can be a bit of a mine field. You’re taking in copious amounts of information and at times fielding comments and questions from others when your sensitivities are heightened. I think back to getting our results from genetics and him telling me my son’s primary diagnosis was so rare that I would probably know more about it at the end of the day than he would. I was gifted handed a stack of abstracts and one web address and was given well wishes for the rest of my life. I remember not long after that appointment a family member attempted to pay me a compliment saying, “You have all this prior experience with kids with disabilities, you’ll be a shoe in for all this mom stuff.” I know they meant well, but I certainly didn’t feel up to the task.

The experience of learning about your child’s diagnosis can relay quite a range of emotions. I think we parents tend to present ourselves the idea that we somehow aren't supposed to have feelings through the initial parts of our parenting journey. For me it was definitely due to some very unfounded guilt as I blamed everything I did while pregnant. Just remember you are allowed to feel. Many parents are stunned by such news. Within that moment, it’s been studied clinically in the past that parents can potentially have a difficult time distinguishing between the reality they faced before coming to a clinic appointment and the reality they now face post diagnosis. For some parents, it’s just trying to comprehend how plans imagined and plans made must now shift, and how it will impact their emotional and intellectual efforts to adjust to the situation. They may feel grief, depression, or shame. Understanding and accepting these stages parents must often go through as being a normal process can benefit all. These stages require forms of support that assist in helping build a firm foundation of confidence in their ability to face a new challenge. It’s no wonder why families flock to places like facebook for community! For instance the uncertain period before developmental assessment in search of a diagnosis can be confusing and unnerving. Following the rendering of a specific diagnosis, such as autism or cerebral palsy, there’s a series of feelings often felt over time before we really come into ourselves as parents. The range of feelings between shock and sometimes anger often translates into a range of behaviors as we sort it all out. Some parents may deny their child's disability or try to avoid that reality in some other way. Some parents will search for or try to propose various actions in an attempt to change the reality. Some may "shop for a cure" or try to bargain for a different reality. Those who react in anger to big life changes often seek someone or something to blame. They may demonstrate their anger outwardly, in the form of rage, or become withdrawn and passive from intense feelings of guilt. Verbally attacking anyone who might be blamed for their circumstance, including displacement of responsibility onto the original diagnostician or any supportive professionals, is common.

A community of support can mentor you into seeing life after a diagnosis.
Resignation can be a difficult phase, well at least it was for me. My son was born before the era of efficient genetic testing like microarray so our wait for an answer was a considerable amount of time. For parents that considerable amount of time is too much time giving ourselves permission living inside our own heads worrying and creating scenarios that haven’t actually happened yet.  In some cases intervention therapies haven’t begun yet and families often have a difficult time finding their groove if you will and find staying home is easier than managing time out and about as a family. Once a structure of understanding a diagnosis and how to help is created, life seems a little more manageable as there’s less fear of the unknown. It’s one reason that makes social media a powerful place. Having an opportunity to see through the modelling of others that life may be different and sometimes challenging, but can also be rich and fulfilling which is very reassuring. Acceptance is the achievement of an unconditional positive regard for your child. Reaching this stage is highly correlated with the school inviting parents to become team members in a program with caring professionals, and often paraprofessionals, that is designed to meet all of the child's needs. Acceptance breeds an engaged and informed parent who’s ready to learn and advocate for the best life possible for their child. Parents are able to put their lives together and see their child as needing you in new ways still filling your role as parent. We talk about a future sometimes, and talk about our kids free of undue emotion. They can discuss and participate in designing or providing instruction objectively. For me, this couldn’t have been done without the support I received from other families online who have gone before me.




Because you know what, I needed a place to pour out some of my energy into a environment with others who could relate to what I was going through. I like many other parents flocked to the web in search of that. It’s become a space to research and share information about disabilities. It’s a two-way and sometimes multi-way form of connecting that can provide at times a “over the back fence” or potluck dinner level of intimacy. When your parenting role increases the necessity of a role of being an advocate, like never before social media has an opportunity come for families to be mentored into the job and to know what supports are out there. There are a great many ways to cast a wide net out to seek more people. To find organizations that might have escaped your original view. To see who is working on new innovations. And to assist in creating research and in some cases political change.

To borrow a bit from the complex pain community, I’d love to tell you about spoon theory, have you heard of it? If you can imagine a kitchen jar is you, and that it’s full of spoons. That each spoon represents a unit of energy and how much energy you use will depend on the person. Showering might take three spoons, paying bills requires spoons, making phone calls…. The point is, you only have so many spoons that you can use in a day. The same can often be said for caregivers and parents of kids with disabilities as the level of needs applied to our lives is greatly increased along side the usual list of adult responsibilities. To go through the day regularly sleepless for instance may greatly decrease the amount of spoons you have in a day.  It’s one reason why I appreciate social media as one tool in my life. It makes many of my social efforts fairly low energy. I have pulled all nighters in the past and have had my spirits lifted by another fellow facebook mom who is also pulling a night shift with their kiddo. I and from what I’ve seen of the research world don’t have all the answers when it comes to parenting kids with disabilities and the support cultures developing on social media. What I can convey to you today are anecdotal experiences from many hours of networking and from other views from the web which you might not entirely agree with, but I hope that this develops a dialogue upon which we in fact can do better as a parenting community online.  

But let’s dig into some of the awesome opportunities that lie in wait for you! First off I’d like to introduce you to Twitter, which I find many people make a face at when I mention it. Even I carry the opinion that the premise of limited character usage is weird, but it does prompt you to really think about what you are saying.  Many of us are parents who wish to see change on certain subjects in our lives. I for one am particularly passionate about the health of our kids and the state of pediatric care overall. Twitter is a platform upon which everyone is at the same level and you have an opportunity to add your two cents to really any subject you choose. Heck! You can talk to celebrities if that’s your thing! But when it comes to healthcare and disability related organizations, twitter becomes a place for sharing knowledge and new research. Many academic organizations disseminate newly published studies with greater speed than they ever could. Many researchers take innovative steps to making sure their hard work to gather information falls into the right hands.




Professor of Pediatrics and Psychology Dr. Christine Chambers’ research focus has been to develop tools regarding kids and pain which resulted in the development of the website itdoesnthavetohurt.ca. This website gives parents the tools to help kids develop coping tools and an understanding of the concept of pain. It also gives parents and understanding of the resources they have available to them while inpatient or in clinic. But you have this great website, how to you get people to know about it? She teamed up with one of the most viewed parent bloggers on the web and created a series of articles but also hosted regular tweet chat nights where parents had an opportunity to talk about children’s pain and ask questions.


   


                   

Twitter becomes a place upon which organizations and researchers can get a read on what parents like you are thinking about nowadays. There’s no better way for that to happen than through Twitter Chats. It’s essentially a focus group where you head to an organization’s Twitter page. A series of questions is asked on a particular topic and you have the opportunity to weigh in on it using a certain hashtag with all of your responses. That way organizations can collect information in order to better help you in the future. Also its just a great place to learn from people from literally all walks of life. In many cases as well it’s also a good way to see what organizations are thinking about and provide you a platform to encourage them to press further and not let tweet chats become an echo chamber with info that doesn’t see the light of day.

Something to think about as you dive into Twitter is that with your words as they say in the Spiderman movies: “With great power comes great responsibility”. Your words are public and can be seen by anybody so it’s worth conducting yourself with a measure of thinking before you speak. One way to assist in guarding your words is to use the phrase “opinions are my own” in your profile description. Social media and parenting a child with disabilities is rather new territory. A lot of established norms have come about in the parenting experience. Diagnosis, early intervention, starting school etc. Many can be supported with an opportunity for community and mentorship that social media provides. What we seem to lack is contact between parents and simultaneously the community of adults with disabilities. Are we factoring in how our kids would feel about what we post? How would your child as an adult feel about what they saw on your facebook page. Is what we initially see as “awareness” putting our kids in an unnecessary level of openness? Granted arguments can be made as to how much understanding your child has or function level, but for those that these questions would pertain to; as a parent I wish that I had an easy answer. These questions are in fact are often posed to parents of kids without disabilities as well, the concern however is escalated when our kids are a more vulnerable population that must with age eventually find their way on their own in the world.


We dream of a world that understands the reality of our kids but dually we need to create a safe space for them to live in. The Autism Women’s Network posted once about seeing parent blogs and their social media through the lens of being a neurodiverse adult. “Privacy is a right. Respecting people’s privacy makes being disabled-in-public safer. Autism is also a disability and I expect you to want safe spaces for your own child.” They go on to speak about how nothing is out of bounds for topics with parents be it everything from toileting to meltdowns. That these same parents would be outraged if someone else posted about their kids like this as if it matters as to it’s the “who” that dictates what infringes on the most vulnerable moments in a child’s day.


Adult advocate and blogger Carly Findlay speaks to developing an identity as an adult in the current environment as a person with a disability. “An adult with a disability may choose not to disclose their condition - the whole condition or certain intricacies of it. But sometimes children's identities are made public before they've given consent. When a disabled child's parent has already blogged about their disability or shared photos and stories on social media, their condition has already been disclosed. And so this impacts on their friendships, future employers, relationships and esteem. A friend who is a mum and blogs about fitness told me she's mentioned funny anecdotes about her children on her blog, but never named them. "I didn't want my kids' friends Googling my kids' names and finding embarrassing stuff about them on my blog", she said. It is a fine line between awareness raising and oversharing.” A few year back the popular blog “The Mighty” got into some hot water with adult advocates in regards to a blog post that they shared called “Meltdown Bingo”. As mom to a kid with behavioural issues, I get the intent of such a post. I skirt by on humor and at times darker humor as a form of coping through some very intense days at times. But on the same end I also realize that it’s not my son’s choice to have sensory issues. There are parts of life that because of the way his brain is wired that make certain environments his own personal hell. I can’t even begin to imagine what he goes through especially with him being nonverbal and struggles heavily with language acquisition.


Now there may be some people here a bit up in arms as I write about the lack of freedom to speak about what they want as a parent. As I was sharing some of these quotes with dear friends who are also parents of kids with disabilities, I could tell they found their noses a little out of joint. I felt the same way.  I assure you that there is still plenty of opportunity to channel self-expression within the framework of social media. I’m just asking you to consider exactly where you choose to post that energy. Facebook provides many opportunities for outlets both public and private. Let’s talk a bit about some of the many opportunities that Facebook can provide.

WEGO Health conducted a behavioural intent study that surveyed 433 members across seven therapeutic conditions and confirmed that with their data, Facebook is the top platform for sharing information. 87% of study participants say they share health information via facebook posts. 81% of study participants said they share health information via Facebook messages. With Facebook having an average of 1.39 billion users, it’s easy to see many see it as a valuable platform for information exchange. With very little effort you’ll find people expanding efforts on raising disease awareness and sharing condition specific resources.

Facebook Live offers an opportunity to share your thoughts and feelings for instance if you feel like you’re not much of a writer. It’s a great way to live stream lived experiences from anywhere! It’s a part of my tool box for mental health as I head out to conferences and learn all manner of things about parenting my child. It’s great to see again a year later in my “On This Day” look back option on Facebook as a sort of self check to keep myself on the right track. Facebook pages are a great public outlet to follow public advocates and bloggers and learn from the strength of others without having to actively engage unless you absolutely want to. It’s a marketing tool for knowledge dissemination by many outlets and writers. Here’s a few of my favourite for you!

The Caregivers Living Room is a blog created by Donna Thomson who is mom to a child with disabilities. She is active in the collaborative research community, a gifted speaker and author of the book The Four Walls of my Freedom. She’s an objective thinker who has taught me a lot. What I Would Tell You is a facebook page run by Julie Keon who authored a book with the same title. The book is a collection of wisdom she gained over the first 14 years of her daughter Meredith’s life after she was born with CP. A worthwhile read for someone just starting out on this journey in parenting.


Ann Douglas is an author, parenting columnist and public speaker whose book “Parenting Through The Storm: How to Handle The Highs, The Lows And Everything In Between” speaks to parenting children under the mental health umbrella. An area not spoken about nearly as much as it should. Heck you can also follow me too here and read about various exploits in advocacy and research! Overall as you continue to search facebook the website algorithm kicks in and starts to recommend other folks to follow and you’ll also learn more about who is inspiring others from fellow parents. There’s always a new voice to learn from!    



Facebook pages also offers you an opportunity to share about your experiences in parenting and how family and friends can best support you in challenging times. It’s a great way to bring a deeper glimpse into a world where friends and family might not otherwise have an opportunity to see the full extent of what you go through as a family. Raising awareness through vulnerability if you will! One huge challenge for parents that they often go through is making peace with the idea of asking for help. I’ll admit that almost 12 years into my parenting experience, this is something that I’m still not the greatest at. For myself some aspects of going it alone through challenges is just well practiced self-sufficiency. I don’t mean to sound like I’m brushing off the past three years of multiple lung collapses and aspiration pneumonia but I’ve become pretty good at saving my son’s life. Some aspects of these frequent trips to the hospital are practically a dance as we have faith in even our trauma team as we work together. But there are some things I crave as an overtired parent while inpatient: fresh coffee and human interaction. Hospitals have a way of making time slow down to a unnatural extent and I find that depression sinks in rather quickly. I have worked hard to work on my pride as I often desire for a protective barrier around myself from the world which can be diluted into looking like self-sufficiency. Facebook has been a way for me to reach out to friends and family for support.

In some aspects of this parenting life, it can be common to be lacking common supports from family and friends for any number of reasons. A sad reality for sure, but one that too must be acknowledged. Facebook groups can fill the gaps where we have a need to be filled emotionally. I honestly couldn’t ask for better mom friends thanks to my time on Facebook. But really Facebook groups can serve a number of purposes. With various levels of privacy settings with groups it can be a place to reach out to others and share your struggles without risk of public exposure. To be mentored through many challenging processes and logistics of assessments and government services. It can be a way to come to seasoned veterans to assist in helping you weigh difficult choices. Sometimes trying out different groups comes with a measure of trial and error as anyone can run them. If it’s an environment upon which you feel uncomfortable, it’s easy enough to click “leave group” and continue on your search. But today I would like to share with you a facebook group of parents engaging parents that does it absolutely right. Currently housing almost 1200 members, there is a facebook group devoted to parenting while being frequent flyers at my local Children’s Hospital. The goal is to make it a safe space to talk about the ups and downs of parenting children who are medically complex. Also acts as a knowledge hub regarding the logistics of what’s available to families while in hospital. Engagement is also geared towards not venting about staff but how to create partnerships with professionals and better advocates in ourselves. Members are asked to sign a list of rules of engagement upon being added to the group. Confidentiality is to be respected and screen shots are not to be taken unless to bring concerns to an admin who runs the group. There is no medical advice allowed as it seems to be a common habit of many parents to seek the advice of other moms on social media as to whether or not they should take their child in to the ER. This is not allowed. Raising ideas for potential therapeutic options that can be brought up in clinic with your support team of health care professionals is allowed. It's readily acknowledged that yes, bad things sometimes do happen in a medical setting. Members are asked to acknowledge that number one: there is no trash talking or bashing hospital staff. It’s recognized that they too are human beings and that within this facebook setting, therapeutic mentorship happens and is engrained in members that we are here for love and support but also to help create the best outcome for all involved. It’s better to create partnerships than alienate all involved. You are not allowed to block any of the moderators. And moderators are entitled to delete posts at their discretion and that members will be contacted if a post is deleted.



It’s within this setting that many webs of support have developed as families become more invested in the community of parents they come into contact with both in online group and in hospital. We have a logo hoodie that parents have the choice to wear while in hospital for appointments or inpatient. The motivation for it being a recognizable symbol that extends beyond social media and potentially getting to know more familiar faces you see online now in person. It’s a gateway opportunity for more support and potential new friendships. There is a by donation program for families to access some emergency necessities like travel size deodorant and a toothbrush and toothpaste for when you have to rush into the ER and forget some basic essentials in your hastily packed go bag. It’s extremely common for parents to post in the group that they are coming to the hospital for a clinic appointment and ask the group if anyone needs anything like a coffee, etc.


There have been mental health initiatives for parents to get together and get semi-colon tattoos to honor their struggles with depression. There are families who drop off Christmas baking for families who are inpatient over Christmas.We are currently collecting Pampers Points to get toys that can be donated to the hospital.

It may take you a few times to find a group to call home but I encourage you to keep looking, there’s something so fulfilling about finding yourself a place to call home online. If you are struggling with finding a community with a specific diagnosis, I encourage you to try making your own! Especially if you have a diagnosis that’s rare as many families flock to social media in attempt to find others. If you are creating your own group for a rare diagnosis it’s worth creating a web presence that makes you more searchable. It helps for instance to create a small and to the point website on a user friendly platform like wix.com (which is also free) that just functions merely to divert those searching towards your facebook group. There are also great places to search for others in organizations such as NORD, CORD, UNIQUE, Eurodis or the Global Genes Project. All are also accessible via facebook.

Facebook groups are that quiet and much less public place upon which you have that opportunity to be vulnerable. Given the various levels of privacy security with Facebook groups, another opportunity that presents itself to families is a more accessible way to engage in research. Organizations are seeing and understanding the barriers that often stop families from participating in research. It often takes getting the day off from work, finding not only childcare but actual qualified childcare. It can feel discouraging when you don’t bear witness to the results of your hard work and the application of said research.  My relationship with CanChild has been as Parent Engagement Facilitator for their Facebook research group called “Parents Partnering In Research”.


It’s initial purpose was to create a social environment upon which parents, researchers and other professionals could discuss all manner of subjects considered important to families of kids with disabilities. It’s a knowledge hub that gives both parents and professionals an opportunity to get to know each other at a deeper level as time in clinic is often time restricted. There are a great many experiences we have as parents that needs further context to be fully understood. We as parents also have the rare opportunity to peer into the research world and understand all the work that’s involved in the creation, dissemination of research and the hope involved that their work one day will become policy. Our study on the function of the group showed how much we came to understand one another better. Many families are provided with an opportunity to collaborate on various projects as it’s readily acknowledged that lived experience is vital to the creation of meaningful research that has real time application for its stakeholders. You are a stakeholder, did you know that? We live in a rather unique period of time in Canada. Despite all the challenges regarding staffing the role, we have a federal minister of disability and sport. We have proposed accessibility legislation due to be released this spring. This time has the powerful potential to be an impactful and change making time for families like ours. We as stakeholders regardless of where we live really, need to consider if there’s a way we can contribute to making the world a better place for families like ours in the future. Policy creation requires evidence to be established. Having an open door through facebook to be a change maker in a way that doesn’t provide excessive barriers in your life has definite therapeutic value. If you wish to get your feet wet in this form of engagement and collaboration, find me on my facebook page referred to in one of the photos in this blog post.
 
Some other great communities that have sprung up from research have been one from the app Jooay which assists families in finding accessible activities for their kids. They have a Facebook group that gears towards mentoring parents into creating an active lifestyle for their kids. Better Nights, Better Days is a wonderful collaborative effort geared towards the study and dissemination of information on the subject of sleep. An all too important subject!

With this wealth of information at your fingertips with social media, it’s worth addressing the conundrum that can develop from the necessity of filtering out the good information from the bad. Given there are multiple controversies that at times make you wonder who to believe and many that may prey on different aspects of your child, it’s worthwhile equipping yourself with some tools to help determine what course of action is best for your family. Author Carl Sagan once wrote a chapter in a book titled “The Fine Art of Baloney Detection”. I’ll just touch on a few but it’s worth the read if you get a chance. 1: Whenever possible there must be independent confirmation of the facts. In some cases I seek out a biography of the author and what their other publishings look like. Especially if this information came from some sort viral video. Many times it can expose red flags in their career or a lack of attention to what they were sharing in the first place. Another source digging tool I use that’s not 100% effective but it does help with a lot of frequently shared sources is to add the word pseudoscience to your google search. Some of the top shared sources for health material on social media are in fact some serious head scratchers.

You may have seen inspirational memes frequently shared by David Avocado Wolfe. He touches on disability every so often and just overall healthy living. He uses the memes as a way to draw in followers. But this former reality tv star can also be seen on video sharing insights on who chocolate is an octave of the sun. (I still don’t entirely know what that means.) Also that mushrooms are visitors from another planet and that gravity causes arthritis. Natural News is a second top shared source who at times can create what looks like compelling articles on autism and science. Upon further examination it can also be found that he’s a regular guest on conspiracy theorist Alex Jones show InfoWars. He’s also written articles on how Mars used to be home to an ancient civilization that was destroyed by nuke wielding aliens. Or any number of false flag conspiracies.

These of course are extreme cases and sadly super popular. Some information can me a whole lot more subtle in your attempts to verify. Its why its good to take your info to other people. Speak to your care team as well or paediatrician about what makes a good study, how to know if a study is peer reviewed and more. Adding your paediatrician or other therapists to the conversation makes you an empowered parent. Never be afraid to print off a study and bring it to an appointment. 2. Encourage substantive debate on the evidence by knowledgeable proponents of all points of view. Adding to what I said above, it’s worth not letting your cognitive biases in the way. To really listen to both sides and most importantly be ok with the potential of being wrong. Deep feelings for our kids and the struggles they go through have a way of creating at times an echo chamber where only evidence that fits within our at times limited views becomes the only thing seen as acceptable. Making decisions is hard, 12 years into parenting and its still a process that I don’t enjoy. It’s probably in my top five list of things that deeply affect my mental health. It’s why we need to reach out to those in your team when seeking clarity to information we come across.

I really struggled with identifying how best to conclude this webinar. This is a pretty broad topic when you think about it with a lot of points to ponder. Then I spent an evening on a Twitter Chat with a bunch of north American health care leaders talking about mental health. One of the questions raised was: How would you respond if a friend who doesn’t use social media asked if it was good or bad for mental health? I was rather curious to see the answers from the diverse audience and the common consensus was this. No one thing alone is going to be a benefit to your mental health. Those who rise above struggles or learn to walk with theirs often have many outlets upon which to pour their energies into to provide a more broad sense of wellness.

A UK study by national disability charity Scope has found that many parents of disabled children are suffering from extreme stress and isolation. The survey of more than 1,500 parents, found that almost half (47%) have visited their GP due to anxiety, with 57% then being prescribed antidepressants. The findings paint a stark picture of the emotional toll of a lack of support. Two thirds of parents (69%) said they’d had problems accessing local services over the past year, while 90% expressed concerns about cuts. Many parents spoke of feeling isolated, and said that emotional support, such as support groups or counselling services should be more widely available. Three in five (60%) parents said that talking to other parents with disabled children was an invaluable source of support.



While everything in life has some form of pitfalls, there are many worthwhile benefits worth accessing regarding social media. The questions I posed will come with answers in time if we are mindful of their existence and inspire future research into them. I do hope we continue this conversation as I do believe we can create optimal environments of engagement and support without falling for bad science and underground questionable activity. Social media can be a piece of support for optimal mental wellness and information exchange to support your child’s care.  


I believe parent Laureen Morley explains best with a beautiful account of how social media impacted her life as a parent. She says, “My son was born at the end of 2005 and was diagnosed with Down Syndrome within a week of his birth. Once we got past the NICU phase, we started researching everything Down Syndrome online; everything from the medical community was negative, lists of things that my son would never do. It broke our hearts. But then we came across a web site that opened our eyes to a whole new world of Down Syndrome, it was a site full of encouraging letters written by parents who were on various paths in their journey with Down Syndrome. Probably the most defining thing about that particular site was the pictures, seeing children, teens, and adults with Down Syndrome; all doing things that any other person their age would be doing. It made all the difference in the world; it gave us hope for our son’s future. Through that site I found several blogs, and eventually found Facebook, where I now have a tremendous network of friends and advisors. One thing that I learned was, that I was not alone, sentenced to a life of nevers. I cannot imagine what parents did 30 years ago when they were handed their child with a pamphlet and told ‘good luck’. The internet, especially networking groups like Facebook or Twitter and technology have brought together some of my now closest friends, many of whom I may never meet but will always be a part of my life.”

I know, that I don’t know, what  the future holds, but that we are better working with each other  as we move forward. Thank you for the opportunity to share today.'