The answer is simple – I want people to care for the caregivers. But I’ll get to that.
I’ve been blogging for a while now. Since 2005 I think, with a lot of breaks. It started when my twin boys were diagnosed with autism. Information about their diagnosis and the subsequent changes to our life were coming at us fast and furious. I couldn’t keep up with updating friends and family. Blogging was a simple way of journaling it all. What I never anticipated was that I would inadvertently get swept into the world of mommy-blogging. It really was a thing. Moms everywhere were cooped up in their homes with their young children. They were feeling isolated and and often starved of grown-up conversation, but could now find community with the outside world. Their efforts were appreciated by other mamas who could relate to the challenge of finding the perfect solution to a sleep schedule or the healthiest recipe to nourish their kiddos.
My goal was never to be a part of that community. But it didn’t take long before it was happening whether I wanted it to or not. Because back then, Facebook wasn’t something I knew anything about yet. The cool kids in university might have been on to it. But I was still stuck using a very public forum to share my family’s very personal stories. Soon I had followers who were from all over North America and they were actively engaging with me through my site. I ‘met’ a lot of great people who opened my world up to information I likely wouldn’t have otherwise learned about.
In 2005, autism was relatively unknown to me prior to having my boys, despite having worked with people with developmental disabilities. It pains me to say that the only word I ever saw listed in their case files was “mentally retarded” or “mentally disabled”. It also pains me to date myself and admit that in 2005, the internet was only starting to really be a resource that I would use for connection with others and as a (sometimes) reliable resource for information.
So what started as a way to provide updates, turned into a hobby that connected me to community. On a personal level, it was cathartic to transfer my thoughts from my brain to keyboard. It also felt like I was an active participant in helping with the growing movement to raise awareness about autism. It was my little way of serving or finding purpose in a very difficult time of our lives. I knew I was helping to raise awareness and compassion and better understanding in the world so that my boys would be better understood and accepted.
I also experienced great fulfillment in knowing that by sharing some of the challenges we were facing at home, it made some instant impacts on other families who benefitted from the information. Nothing made me happier than to hear from teachers who had ‘a-ha’ moments from learning about what we were going through at home.
I specifically remember one post when I detailed the trials and tribulations of our sleep issues. From the time the boys were 3ish to 10 or so, Will was really only getting a few hours of sleep a night (and so were we as his parents). We were all in sleep-deprivation hell for years and that lack of sleep affected every single aspect of our lives – (in some ways I often think my ex left just so he could get his beloved 8-10 hours a night). I remember hearing from two separate teachers after that post and they both told me it had completely changed their thinking in how they were judging their ASD (Autism Spectrum Disorder) students’ parents and the students themselves.
You can’t get blood from a rock as they say, and likewise, how can you expect to get focus and attention from an exhausted student? An inside look at life in my home gave them the added insight to consider the sleep factor before being quick to judgement about why the parents weren’t establishing better routines and schedules for their kids at home. That was a huge win in my mind.
While blogging from a mom’s perspective has given me a space to write and share and learn from others, I can see how it’s not for everyone. The irony isn’t lost on me that I am spending a few hours to write something, when I have very little time to myself and it may not even have many eyes land on it. Who has the time to read blogs these days? The trend from mommy-blogging shifted around 2010 to a quicker and more visual medium, to mobile apps like Instagram and for ‘vlogging’ on YouTube. Dummies like me who only wrote for fun, never clued in to the possibility of making money from the hobby and didn’t keep up with the trend to migrate over to the new mediums where moms were commercially benefitting from their storytelling.
Blogging Isn’t Respected
It’s interesting to me to hear people’s feedback about blogging. Blogs don’t get the respect they deserve, in my opinion. I don’t think they are replacing journalism, just as I don’t think Twitter replaces the news. They serve a different purpose. Blogging gives businesses an opportunity to share content that helps to bridge the gap and make the connection between a product or service and their customer. It helps to develop a brand so that customers and clients can start to know the human who runs the business, or to understand the mission that goes beyond the sales.
Blogs bring the personal to a very impersonal space and that is likely why many higher-level professionals think it’s a “soft” medium. I’ve heard it said that it is the space between an article or an essay and a ‘Dear Diary’ entry. So when they hear that it’s a woman writing, particularly if it’s a mom writing about her kids, it’s passed off as a cute hobby where she can vent.
Maybe their assessment is valid. But there is a need for that venting, especially when it puts the spotlight on societal issues that deserve some more attention. Moms, for example. Before mommy-blogging, did moms even exist? Did people even think of them beyond their one dimension as caregivers to young children before bloggers started being sought after for their financial planning, organization, and sourcing of products and services that made life easier for busy families? Back in 2005 to 2010, I can promise you that I would turn to other moms online before I would ever check with my doctor when I needed anecdotal information about alternative diets and nutrition and therapies for my kids. Doctors just didn’t know enough about autism at the time, but the other moms sure did.
I’ve had men give me a conversational (not a literal) pat on the head, when talking about my blogging, telling me that it’s a nice hobby that is worthwhile if it makes me feel good. How insulting is that? It’s more than that. I know it’s more than that and that’s not my pride or ego talking.
Dealing hope through blogging
Since creating this Willowjak blog, I know that many of our resident writers have received feedback about their writing that tells of how their sharing has changed lives. Readers who have felt alone in their personal challenges and struggles saw themselves in the stories shared and it brought them some peace or validation to know they weren’t the only ones. Others who have not yet found themselves in our stories, but who are struggling with their own issues (in a more private way), are finding inspiration in our writers themselves, for what they have overcome or continue to work through with a hopeful attitude that things will get better. That attitude spreads hope. This knowing is what inspires me to continue to grow this platform. We all need that.
I feel like I have a calling to share what I know. When I experience something great that makes me feel all warm and fuzzy and full of gratitude, I want others to feel it too. When I learn new things that change me, I can’t help but bubble over with passionate excitement to tell everyone I know about it. My poor co-workers, friends and family are very familiar with all of my mini-passions (podcasts, books and YouTube videos) that I’ve shown or spoke about more than once and likely more than five times because I couldn’t help myself.
Finding my People
I am especially passionate about finding my people. I want to find the single parents out there who are isolated at home, caring for kids whose challenges often keep them out of the mainstream. I’ve been that parent… I am that parent, who is often isolated on her own, hanging on by her fingertips. And let’s be honest… we are often pitied, but we’re often overlooked, when we talk about community or the needs of society.
When COVID hit our world like a freight train and governments and communities rallied to come up with plans of how to support its people… single-parent caregivers of people with disabilities or complex medical issues were not at the top of the list of considerations when designing a plan.
We (meaning society) feel sorry for those parents. There might be a tinge of relief that it’s not our reality. We even go out of our way to help out the people we know who are in that situation. But rarely do we really let ourselves imagine how these families are surviving the day to day through a pandemic. Or even, just a normal day, as a single parent caregiver.
I recently saw an online comment that had me shaking, I was so angry about it. It was a post in a community Facebook group during our most recent lockdown, that chastised a woman who had two little kids with her as she tried to pick up groceries. People were piping in about how irresponsible it was for her to be in a store with her children during the pandemic. Others chimed in to defend her, reminding that her circumstances may not have allowed her another option to get groceries without bringing her kids along. One man wrote a comment that if the woman could have kept her legs closed, she wouldn’t be in that position in the first place and that he was sick of people feeling sorry for single mothers….
Listen. You know I have an opinion about that piece of sh*t arse who said that, but that’s content for another post. But I tell you that story because I think that it’s an example – and not an extreme example – of how single parents are seen or respected in this world. So if we are struggling in managing it all on our own, it’s the consequence of our choice of a partner when we got ourselves pregnant? Well if it means I chose wrong in my partner, does that mean I also chose for two of my children to have a serious developmental disability? Does that mean I’m not worthy of consideration when structures are put in place for supports during a pandemic or after?
And when you add the fact that those children now happen to be considered legal adults.. the window of access to supports become smaller and smaller and smaller. So small in fact, that it’s a pinhole, trapping the parent in a tiny dark space to survive it on their own until they either die and their kids end up institutionalized in some way OR they miraculously come up with an out-of-the-box solution all on their own. It feels like I live in a society that makes it impossible for me to succeed.
So… I guess I just proved that some of those blog-critiquers are correct in their critiques by going off on a mommy rant. But I’m okay with it.
Care for the caregivers
Because at the end of the day, how else is the rest of the world going to know about us? How else are we going to make any ripples so that people care about the families who are hidden at home? We are too tied to our responsibilities at home to be able to find a way to get out to protests, or marches, or round-table discussions. Caregivers who are at home on their own who are monitoring their children’s oxygen levels, cleaning feeding tubes, or administrating trache care don’t have time to go to meet their government officials or join an advisory board. Sometimes I have time when my kids go to bed, IF my kids go to bed, to write up a blog post and hope it lands on the ears of someone who cares enough to remember these stories when they’re in conversation with other people.
Maybe that conversation will be remembered when someone is trying to think of who they can help out in their own community. Hopefully that conversation will be remembered when a judgement is made about the neighbour who couldn’t get their garbage bins brought in right away, or their grass is unruly, or their garden looks unkempt. Ideally that conversation will be remembered when a teacher is frustrated by the parent who doesn’t get the forms returned on time, or the communication book filled out with tons of info, or the purchases made for the snacks requested to send to school.
Perhaps when someone reads our posts about runaways and 2 hours of sleep a night, there will be more understanding by a condo landlord when his tenants nag about security in the building. Maybe a family doctor won’t be so harsh in judgement when he makes a ‘simple’ request for a parent to get a child’s bloodwork done, when he hears stories of the crazy fear and subsequent dozens of hours a family has worked on practising visits to the doctor’s office in therapy.
We know that anecdotal examples are what make change. That and a decision or policy-maker being directly affected by these challenges themselves.
It’s the squeaky wheel, folks. And when you’re on your own and stuck at home, my squeaky wheel is my blog that hopes to cause a huge ripple.
At the end of the day, I don’t just hope to cause some ripples that will help other people like me. I want to find those people and build our own community so we can find new solutions to our similar challenges. If you’re someone who can relate to what I’ve written here.. Please reach out and send me a note. I’d love to hear from you. I’ve got tons of care for the caregivers.
I’m trying my best to pay it forward by dealing hope and sharing stories & tips on caregiving and how to survive hard things. I blog a lot about single parenting my adult twin sons who both have autism, and the challenges we face in surviving the everyday challenges and planning for a future full of unknowns.