We’ve all heard that saying, “It takes a village to raise a child,” but when you’re parenting a child with a disability, you’re often left wondering, “but where’s my village?”
You look around and ask yourself who else understands what it’s like to change your child’s diaper in a public restroom without an accessible change table, cramped in a stall and fumbling. You wonder who else can relate to constantly scanning the playground to account for your child while simultaneously watching for the potential escape routes your runner might take, never really being able to sit down and relax or read a book while your child plays.
We are incredibly fortunate to have the local community we have. We have found other parents who can share their struggles, successes, fears and dreams with us. These other parents understand what we mean when we say, “this is hard.” Online, where most of us communicate with each other, we ask the questions it feels like no one else can answer.
Questions like : What supports have you found for your children this summer? Do you know where we can enrol our child in programs that will also offer an adaptive and inclusive environment? My child is starting school; what do I need to do to prepare the school, our family and our child for this huge transition? How do you handle trips to the dentist? Is our only option sedation for treatment?
While online support and community are vital in making caregivers feel less alone, we lack that neighbourhood community vibe. The one where the kids from 3 doors down come knocking and invite Robert to play, and we know he will be safe with them.
We have worked hard to create a network to help us in raising our children. We have a loving and supportive family who understand how to keep Robert safe.
Sometimes as caregivers, we grieve the life our children might not have. The life we’ve imagined for them is where we don’t need to plan for meltdowns. A life where we don’t need to fight for inclusion and acceptance because the world has understood that accommodations serve more than a minority.
Instead, we see a bumpy road ahead, one with many hurdles.
We look for allies, people who help us carry the weight of our worries. We look for others who are clearing hurdles and reducing our stress.
We welcome people who look around and say, “This could be better. I can make it better.” They act, without the need for families to advocate (again and again).
On the heels of the previous post, I urge you to consider how you can be part of the village we hope to have to help us raise our children. We’d love to have you.
2021 was a bust when it comes to my blog. Did you notice? I felt the emptiness of not putting “pen to paper” over the past year. The emptiness of not connecting with others, and sharing our trials and tribulations.
It’s not that I didn’t have anything to write about. With 3 (now 4!) kids, it’s nearly impossible to have an uneventful day. It’s more that I wasn’t motivated to write. I felt like the cycle of daily life wasn’t interesting enough to capture an audience’s attention.
I forgot why I wanted to write this blog. I let the Panny overcome me. But honestly, this blog is more for me – as selfish as that sounds. I find I actually process a lot of what is happening when I write about it. And I spent an entire year without writing, and in a way, not really processing.
Now here we are… About to turn the pages of our calendars and jump into a New Year. And with this, I want to bring myself back to the blog. I want to get back to documenting our moments of joy, our reasons to celebrate, our struggles, our challenges, and even our “mundane Panny lives” as it were.
And with the New Year, comes a New Word. This is the time of year where I don’t make a resolution. Instead, I think about what I want to use as my “Word of the Year” – I blogged about this in 2020.
I ask myself “What will guide me in 2022?”
Naturally, I have been reflecting on the events of the past year. We have had many personal changes and there is much to think about with what is going on in the world around us. What mindset do I want to bring into the New Year? And after a lot of thought, I finally decided on a word. This year, my word will be Cherish.
It was the definition of the word that really spoke to me. As a verb, it prompts me into actions of love and hope.
In 2022, I will :
Cherish my babies. Cherish my marriage. Cherish my family. Cherish my friends. Cherish my body. Cherish me.
And with the addition of baby Margo (surprise! I had a baby! I will blog about that in 2022), I feel as though I want to cherish every moment with her. So why not make it purposeful, intentional, and part of the day-to-day in 2022?
What’s your Word of the Year for 2022? Tell me about it in the comments, I’d love to hear about it.
Sometimes, something happens and it’s not really a big deal, but the weight of that moment feels like so much to bare. One more thing on an already full plate.
Report card season? It’s not just looking over one report card, it’s looking at two. It’s trying to figure out how the report card and the education plan for your child line up.
Doctor’s appointment? It’s not just one quick visit to the family doctor, it’s an appointment with the pediatrician, followed by blood work, followed by a follow-up visit or call.
And usually, these ‘little extras’ aren’t a big deal. But sometimes, it’s just one more thing on a full plate.
Recently, we’ve been pretty quiet on the blog. It’s been a succession of events that have felt like “one more thing” on an already full plate. And blogging about it, while typically therapeutic, just wasn’t a priority.
But summer is here. School is nearly out. The return to normalcy feels imminent and possible this summer.
We’ve registered Robert for some private swimming lessons at a local pool. He starts next month, and fingers crossed that it’s a wonderful experience for us! He’s been partnered with an instructor who has conversational level French skills, and he has been so excited to swim all year (the overflowing bathtub as he attempts the freestyle in the tub are proof of that).
Our boys are forever keeping us on our toes, challenging us to become better parents, more patient people and (most importantly) safe places for them to process emotions. And just when we think that we’re at our breaking point, someone comes over and gives us the sweetest hug or says the sweetest thing.
For Father’s Day, I asked the boys to draw something for their Pépère. Robert drew one of his dolls, complete with her wild hair, big eyes and shoes. I’ve wondered when he’d begin drawing people. It’s a skill that’s been broached with his OT before. “Tadpole” people are typically drawn by children between 3 and 5 years old, with more details emerging the older they get. You know, the head with legs and arms directly attached to it. This is where Robert’s at – and while some parents might think “ah, it’s just stick people drawing, not a big deal!”… for us, it’s ONE MORE THING.
It’s one more thing to celebrate! One more thing to marvel at! One more step in his development and understanding!
It’s one more thing for us to be proud of. It’s one more thing for Robert to do with confidence.
So while sometimes, one more thing is heavy and feels like the breaking point is near, other times, that one more thing is simply marvellous!
What’s that one more thing your child has done this month that’s made you proud?
I feel fairly confident that it wasn’t that long ago that I gave birth to our 2nd son.
Wasn’t it just last month that I introduced Robert to his baby brother, Sullivan? The baby Robert begged me, at every chance he could, to hold? The one he proudly called “his baby”?
I don’t know what happened.
I blinked, and 2 boys became 3.
And suddenly, I’m getting ready to send Sullivan to school in the fall.
Sullivan… my boy who came so quickly our birth photographer almost didn’t make it. The one who was so determined to join us on the outside, my midwife ordered me to stop pushing so she could untangle him. He didn’t let anything stop him, not even his umbilical cord. He was ready to meet us!
My 3-year-old boy is going to school in September.
I don’t know what happened, but in September, he starts la maternelle (also known as junior kindergarten or full-day kindergarten).
We had a virtual introduction to his school, with many smiling faces on camera. We saw some of the staff he will likely see at school in the fall and some potential classmates’ smiling faces.
And as I sat through this virtual session, it struck me how easy it was to enrol him. I didn’t write a 10-page document outlining all there is to know about him. I didn’t have to have a big meeting, complete with his daycare staff, his OT, his PT, his SLP and the school administration. I just clicked a few buttons online, and that was it.
But that’s not the reality for everyone. It certainly wasn’t our reality 3 years ago with Robert.
If this is your reality, I want you to know you aren’t alone.
It can feel overwhelming, daunting, exhausting… and just not fair. Advocating for everything you want for your child and everything they need to succeed. I hope you are lucky enough to be partnered with a team like the one we have. A team that recognizes your child as intelligent and capable and that s/he just needs a few more supports in place to achieve their potential.
And after you go through those meetings and feel like you’ve prepared everyone for what to expect the next year, there’s going to be someone you forgot. Sometimes, the teacher or the educators that work with our kids aren’t at school. They might be sick or are caring for a sick child. When they aren’t there, the person who replaces them might not know about your child. And, even if they know that your child is in the class, they might not have had time to read the 10-page document you wrote. In those cases, a one-pager that outlines your child’s challenges, strengths and preferred communication styles can make all the difference. Here is a template version (in French) of the one we made. If this is useful to you and for your child(ren), I encourage you to edit it and provide it to the school. Send paper copies to the school, and email the teacher and staff a copy as well. And hey! This can also help the bus driver if your child rides a bus.
Un défis pour nous était de trouver des ressources en français, alors, le document en question est en français pour aider ceux qui pourraient se trouver dans cette même situation.
Getting to meet the school staff and administration at the early transition meeting also had its benefits. For one, we were able to see how the team works together, how organized they are, and how they value their colleagues and the students. It was a great foundation for us to build on and made us feel more comfortable with what Robert’s educational path looked like. It helps that we chose a school with an outstanding team.
And while registration for Sullivan only took a few clicks, I miss being able to sit around a table with the staff and telling them about my child. They don’t know that he’s very shy and reserved only up until the moment he feels comfortable, and then WATCH OUT! He’s full of intense energy he is still learning to harness and will need their help to navigate this. They don’t know that he is a sensitive, kind, caring boy who isn’t afraid to play “chevaliers!” or “pirates!” the second he sees anything that remotely resembles a sword. When he goes to school on the first day, he will be a stranger to them, and they a stranger to him. I know he will be OK, and that school will challenge him and help him grow in ways we can’t, but I do miss that introduction meeting. It makes dropping your baby off for school a little less scary.
But I still don’t know what happened.
How it feels as though he was born only yesterday, but this week I registered him for la maternelle.
Some women slip into the role of a confident mom more easily than others. It’s not that they are better moms, it’s just that they are more confident in their abilities.
I’ve been told I’m one of those confident moms. Truthfully, I feel confident in my role as a mom. I’ve always wanted to be a mom, and from the moment my fresh, sweet boy was placed in my arms, I knew this was who I was meant to be. Each sweet baby I’ve carried and birthed has only affirmed that.
I attribute my confidence to my support system. I have an incredible family who is so supportive – they will help me without hesitation or judgement. My boys idolize their grandparents, uncle, and great-aunts.
My family is a constant pillar of support, reaching out to me and offering to help. Family dinners weekly? Yes please! Rainy day drop-ins just for a change of scenery? OK! Don’t mind if I do! A phone call just to say hello? Let’s chat!
When I was pregnant with my oldest, I asked my mother-in-law to come to stay with us to help me to navigate being a new mom. She came shortly after Robert was born and helped me adjust to being responsible for this sweet, sweet boy. Being able to get some rest in those early days was so beneficial.
I also have a group of friends who I can turn to for commiseration – some live 6 hours away, and others live 600m away. Regardless of the distance, these friends are always there to offer empathy, a listening ear, or to build me up after a tough day.
And there are tough days.
Our “public self”, as we all know, is not the complete picture. There are days where I text my husband asking him when he’ll be home because I am not doing OK and need support. There are days when mommy needs a time out because she’s losing her cool and not modelling the behaviour she expects. Because let’s face it, I might be a confident mom, but I’m not perfect.
I have an idea of what kind of mom I want to be. In my mind’s eye, I created a vision board of who I want to become as a woman and a mama.
I want to be a mom who offers her boys a safe place to be, even if they’ve made mistakes. Robert might only be 6 years old, but the foundation for this safety net is being built and reinforced daily. I might not love the choice he made when he took out the acrylic paints and slathered it on himself and his brothers, pretending it was sunscreen…. but, I love him. And while he knew that he didn’t make a good choice, he also knew he is loved.
I want my boys to see a mom who placed importance on community connection. As parents, we get to know our neighbours, look out for them, and check in on them.
I want communication skills to be learned at home, including how to speak with each other even if we are upset or angry.
I want my children to feel celebrated, to strive to be great and to not be afraid to try new things.
I want them to see a mom who models being kind (to herself and others), and who recognizes the importance of making mistakes as a way to build yourself up. Like most parents I know, some of these things I learned in my own home growing up, and others I wished were present.
Sometimes I watch Robert and I see so much of myself in him. He is the typical eldest child (as am I). He’s achievement-oriented, and he wants to be the best in what he does. He can also be cautious, and I see him looking for ways to set himself up for success. Sometimes this means he doesn’t even try because he doesn’t want to fail. He wants to do things “right” and “perfectly” on his first-time attempts at something new. And, boy, does that ever resonate with my personality.
When do we learn that failure is so horrible?
Failure teaches us so much. We know that we have room to grow when we aren’t successful at something on the first try. We don’t expect a baby to be able to walk without stumbling as they take their first steps, so why do we expect of ourselves perfection from the gate?
Failing teaches us resilience, growth and empathy. Giving up isn’t the answer to failure. Moving forward is.
And the same can be applied to motherhood. When we have an imperfect day, we need to remember that moving forward teaches our kids so much, and it gives us strength as parents. Those imperfect days allow us to reframe what is important to us. And when we invest the time into focusing our energy on what matters to us, our energy will flow in that direction. We will show our kids that it’s ok if your day or week didn’t go as you planned. We can accept that, and adjust our focus accordingly. We can fail and still be great.
I am a confident mom.
I am a confident, imperfect mom.
I advocate for my boys, especially Robert. I model a growth-mindset whenever possible. Rather than look at my friends with envy – you know, the ones setting up amazing sensory bins or literacy activities, or the ones baking homemade bread with their kids and successfully implementing a chore routine with them – rather than look at those friends with envy, I look to them for inspiration. What can I learn from them?
Motherhood isn’t a competition. It’s a journey, and it’s hard.
Give yourself permission to accept that it’s hard. But mama… you can do hard things.