We Don’t Go Down Waterslides

Parenting is hard. I don’t need to tell anyone who is a parent that, but I’m going to. It’s excruciatingly, break your heart three times a week hard. Everytime I think I have it right, I learn a little bit more of how I’m wrong. Today, again, I was reminded of that.

We are out of town for a medical appointment and after a long day of travel decided a swim was just what everyone needed.

Charleigh loves swimming. She was adamant that she would not be going down the big blue waterslide however.

When we got to the pool there were a dozen or so children already playing. Perfect! Charleigh hopped right in the pool with her daddy and watched them run, jump, and laugh from a distance. They went down the waterslide over and over again. We tried to talk her into going too. “You don’t have to go…but the kids look like they’re having so much fun”…”you don’t have to go but…maybe you’ll be able to make some friends”.

About 15 min later she pulled herself out of the pool, put on her goggles, and shyly said to me “mom, I’m going on the waterslide”. I was shocked. Me and her dad watched her gingerly tiptoe to the waterslide, then up the stairs. She gave us one quick glance, took a breathe, and down she went.

So proud.

She beamed as she went down again and again. Giving us thumbs up. Racing up the stairs behind all the other kids.

Then I watched as she stood at the edge of the pool, the other children laughing and playing near her feet. She said, “is it okay if I play?” No answer. “Can I play please?” Shunned.

My heart sank as I realized what was happening.

She gave one last look at the kids, then climbed to the top of the waterslide stairs. A little boy sat at the top. She looked down and at him full of hope and said, “would you like to play with me?”

“No. You can’t play with us!”

And with that she burst into tears. Failure. Instead of taking the slide she walked slowly down the stairs sobbing. Her dad swimming towards her and me trying to contain my own tears that had welled up.

I realized quickly that she had not gone down the waterslide for herself. She had gone because she desperately wanted to fit in. She wanted to be a part of the club. She wanted to make friends.

And as a parent, I had fed her to the wolves. I didn’t tell her that she didn’t need a waterslide for other kids to like her. I didn’t tell her that you should face your fears for you, and you only. My intentions were good, my execution it’s own failure.

So as we laid down in bed tonight, her body tucked into my arms I got ready to tell her the truth. And as I did, the little girl I was once leaned in with her. A mother, who was once six, sixteen, twenty-six, and who still needs a reminder every once in a while that…

“We don’t go down waterslides for nobody babygirl.

We don’t swim unless we want to.

We don’t dive unless it makes our heart happy.

But most importantly,

we don’t go down waterslides for nobody.”

So from now on, you can catch us in the hot tub. We’ll make room for you. Show up as you are, with or without your water wings – because I’m learning to show up as I am and my girls are teaching me how to do it every single beautifully hard day.

World Travellers

I love the poem ‘Welcome to Holland’. People have sent it to me, I’ve seen my friends find comfort after their diagnosis, and strangers reference it. It is beautiful, and it’s catchy, and it doesn’t fit my family at all.

While it resonates with so many for so many different reasons. For myself, it’s always missed the mark. You see, I’ve never felt like I stepped off the wrong plane. We think Holland is beautiful, but I’ve seen my fair share of Italy.

I mean, our trip has been more like those backpacking frat trips you take after high school then a well-planned trip complete with guidebooks and language classes… but we are in Italy nonetheless.

Before Charleigh was diagnosed with autism and speech apraxia we had dreams for her and we envisioned what our life would look like together like most parents. After Charleigh was diagnosed we held on to those dreams even tighter and dreamed even bigger.

We don’t worry about the Italy we’re missing. We don’t look at the guidebooks and try to hit every destination. Instead we wander the beautiful streets, letting life lead us to where we need to be. Some days it rains and Italy looks a lot like anywhere but Italy. We trudge through the flooded sidewalks, praying for sun, wishing we were anywhere but here. Sometimes we get lost. No matter how hard we try, Italian just isn’t English.

The thing is though, “Welcome to Holland” makes us want to miss a place we’ve never been. I know we have though. I can’t tell you where Charleigh’s disability ends and where she begins. Maybe it doesn’t end at all. Maybe every piece of her is woven with her autism. It is the crinkle in her nose when she belly laughs, the way her eyes light up when we fight over who loves who more afterschool, it’s the memories. She holds on to moments, filing them away, only to bring them back so vividly you would think she was experiencing them again all over. It is all the things that challenge us, and all the things that are her. Truly her.

So sometimes we’re in Holland, and other days we crash land into Italy. Most of the time though, love and autism takes us on adventures we never would have been if we only thought we could go to Italy or Holland. We see the world, because strong little girls can’t be kept in boxes or borders.

In this house, it’s not “welcome to Holland” but rather “World, welcome to Charleigh” – shes a dang good tour guide and we’re learning how to be good travellers ♥️

Why can’t it be me ?

A few years ago when I decided to pursue law school me and Jamie were driving on the highway discussing our long-term goals. Becoming a lawyer and advocating at the United Nations Permanent Forum for Indigenous People’s was mine. When I brought it up, Jamie hesitated and said “there’s probably only one of those positions, it would be really hard to get”.

Without skipping a beat I snapped back “why can’t it be me?”

And that’s the truth we all need. Why can’t it be me?

I knew when we decided to expand our family that there would be questions. After all, I’m more than halfway through my pursuit of becoming a lawyer. Law school isn’t easy, moving to a new city isn’t easy, and raising two children while doing it all won’t be easy. On the flip side, having your wife commute 4 hours with two young children while attending one of the most competitive programs in the country has its challenges as well.

Nobody asks him though because it’s only as a woman that having children is this beautiful, incredible, amazing….dream killer. Its a speed bump on the road to success. It’s a pit stop before the next adventure.

This life we’ve built together however isn’t a race. I don’t wake up every morning disappointed that I haven’t yet hit every milestone I’ve ever set for myself. I wake up every morning next to my best friend and #1 cheerleader, my little girl asks me to cuddle up on the couch with her and I get the chance to show her how beautiful this world is over and over, and every single day I live my dream.

Becoming a lawyer is my dream, but so is having a family. Changing the landscape of the justice system is my goal, but so is raising my daughters to know that everything they could ever want is within their grasps if they have the courage to pursue it. I’m not waiting to pursue my dream, I’m living it.

In everyday and every moment and every choice my dream comes alive. It may take me a few extra years to start my career, we may have more babies, we may find new paths to explore and more adventures to seek.

You can be sure though that no matter where life takes me I’m living out my dreams…with my babies by my side. Because when they talk about women having it all, why can’t it be me?

Stuck on Seven

Last week I was curled up in bed with Charleigh reading her books like we do every night. She had already sped through “Dragons Eat Noodles on Tuesday”reciting every word from memory and was now prying open the pages of a cardboard numbers book from when she was a baby. It was a simple counting to 10 book. She’s been counting for as long as she’s been talking so I knew it would be a quick ending and an early goodnight.

She laid her head on my shoulder and began to count, “1 moose, 2 ants, 3 ducks, 4 rabbits, 5 fish, 6 octopus, eleven spiders, 8….”

“No, no baby”, I stopped her mid page, “it’s seven not eleven”. She smiled and said “Ooooh. Okay” then went back to counting from 1. But yet again, we hit seven which had turned into eleven. And again. And again. 40 minutes and 500 7’s and 11’s later, having used every one of my strategies, I tapped out and called Jamie in to start the repetition. They were victorious eventually. For me though, I couldn’t shake the feeling of being stuck.

For all the progress this sweet baby had made, there were still challenges stacking themselves upon us. Every victory met with a new battle. It can feel like we take two steps forward, but forget that everyone else is on the escalator. While other kids are speeding along, here we are stuck on seven.

And to be honest, it can be a daunting place, this world of IEP’s, ASD, SLP, ABS, OT. It seems there is an acronym for every one of the words I hope will give her the best life, and the older Charleigh gets the longer list. As her mother, it is my job to navigate this foreign language of codes, plans, maps. It’s my job to demand answers, services, and to protect her from a world that doesn’t always want to be friends.

But more importantly it’s my job to listen.

When I walk Charleigh home from school, we barely get a word in as children of all ages wave to her from vehicles, yell goodbye across parking lots, and pass us with cheerful hello’s. It seems there’s not a kid from Preschool to Grade 12 that she hasn’t befriended. She beams with pride as she sings me “where the watermelon grow” and just last week she donated the $5 the tooth fairy had left for her first tooth to an older gentleman who needed it more than she did.

When I truly listen to the world, I can see that there’s millions of us who can count to 7, but far less who see all the love, laughter, and beauty in every moment. I can teach her the letters eventually, but kindness and empathy – that’s something she just gets.

So here we are, a mother who is learning to listen to the things unsaid and a child stuck on seven. As far as numbers go I’ve heard that this is the luckiest place to be, and now that I’m listening – I have to say I agree ♥️

Becoming the Fire…

I’ve never met a mother of a special needs kid whose soul didn’t harbour enough fire to decimate skyscrapers and leave piles of ash where vast forests once stood. You see it in their eyes when they talk about IEP’s and the fight for classroom aids, therapies, and understanding from other parents. You hear it in their voices when they explain their FSCD contracts and the wins and losses they’ve been dealt in that boardroom with case workers who’s hands are tied and whose pay pales in comparison to their workload. You feel it when they talk about their children and how amazing they are with their eyes bright and shiny from the tears they’ll never let you see.

I’m not sure if we’re born with this fire, just waiting to be set ablaze or if like wildfires, we feed off the strength and sparks of fellow women whose fire burns deeply and allows us to ignite our own within.

I do know that the year before and after Charleigh was diagnosed I was soft. I don’t mean that I was emotional (although sometimes I was) or that I was a push-over (I never am) but I believed in diplomacy, that speaking thoughtfully can bring results, and I believed that needs speak for themselves. I attended meetings and appointments and gathered paper after paper to advocate for Charleigh. I teared up at her first PUF meeting when they asked how I was doing with no family support in our area. I sat quietly nodding as they listed the services they recommended we request at her first FCSD appointment.

I quickly learned that the world of special needs services is cut throat and that if I intended to survive my advocacy would need to be fierce. Surprising right? I was baffled when a worker told me that I would need to fight for services. Fight for them? I thought that’s why we got a diagnosis.

I was wrong.

Listening to parent after parent talk about denied services and lack of help and failed IEP’s had me reeling. This was a business, like any other, with budgets and bottom lines. My child had a number and if I wanted her to have the best shot at life my silent nodding was going to have to turn into powerful demands. This also meant that someone else’s child might not get the services they need. It’s incredibly frustrating and as I watched other people’s children’s be denied the tools they need for success I became angrier and angrier.

Then I saw a quote on the cover of a journal that read, “some women fear the fire, others simply become it”. The anger that I felt about a system that attaches dollar signs to children would either consume me or fuel me. And so I did what every other woman I know did. I became the fire. And as a result Charleigh will now be attending full-time kindergarten. Something that was referred to as a “battle” only 5 months ago. She’s meeting every goal on her IEP and exceeding her speech therapy.

And after all of it I have learned the secret to the fire. We become the fire, not because of others but because our children will one day carry the torch of their own future…and they just need us to keep the seat warm and path lit 🔥

Best Friends & Everyone Else

Just when I thought my heart couldn’t be anymore full Charleigh snuggles her cheek into mine and whispers, “mama, you’re my bess fwen”. This is a new saying for her, something she picked up at school and has been repeating all week to every man, woman, child, and furry friend she lays her eyes on. The post office lady is her “best fwen” as well as three kids in her class, the kid she met at McDonald’s plus his mom, the dog named D-O-G she got to pet on our walk, and of course me and Jamie.

Everytime she smiles and says “they’re my bess fwen” we have a giggle and then I remind her that they’re not her bessssst friends, she doesn’t even know them yet. But she persists, “no mama they’re my bess fwen”. As I go to correct her on the difference between best friends and strangers I catch myself.

Are best friends the best because we love them the most ?

I don’t know what Charleigh means when she says someone is her best friend. I don’t know if the words “love” hold any meaning in her life. What I do know is that words aside she does love. She loves everyone. There’s no room for anything but best friends in her life because there is no one who she withholds her love from. Neither the world nor I have managed to convince her to guard her heart.

Charleigh may have thousands of best friends, some of which we will never see again and a lot of which whom we don’t even know their names. That’s the beautiful thing about autism. When you fit just outside of the box sometimes you’re able to see inside in a way those of us who are stuck in the box never do.

Maybe love was never meant to be bottled up and reserved. Maybe love is something we share everyday and in every moment and with every person we meet. Maybe it’s those whose stories we aren’t intimately connected with that need love the most. We all talk about the world needing more love then we teach our children to divvy it out in fractions, calculating who deserves how much of us. It’s a scary thing allowing every single person you meet a piece of your soul but when you do, it’s surprising how beautiful the world can be and how people will surprise you in the absolute best way.

The more I get to see Charleigh’s autism at work, the more I wonder who has it right. The world is full of best friends we haven’t met yet, and what better way to meet them then with a smile and a hug. As a parent, we want to have all the answers but all I know is that these days I do a lot more learning then teaching and the world is a whole lot brighter through the eyes of my autistic child. There’s only two kinds of people, best friends and everyone else ❤️

When The World’s Quiet…

Despite my unwavering belief that without Autism I would not have Charleigh as I know and love her there are moments when I break down. These are not in the times you’d expect. Sitting in the cold white room listening to the words “Charleigh has autism” did not feel like a blow to her future, nor mine. There are no tears on the days the IEP comes home again with “failure to meet” scribbled in every margin of every goal. On the days where we see more hurricane then sunshine I don’t lay down at night and pray my situation should be different when I awake.

What brings me to my knees isn’t that Charleigh has autism and I want to fix it but that the world hates autism and I want to fix that.

I keep myself busy. There’s always meetings to attend and schoolwork to complete and jobs to do. We have speech and soccer and baseball and horseback riding. But every once in a while in and amongst the chaos I find myself all alone, driving in the car to whatever is next on the ‘to do’ list. In those moments my head allows my heart to wander to those places I dare not let myself on any other day or in any other moment. Those far corners that whisper ‘what if?’

Not what if Charleigh didn’t have autism. Not what if there was a cure. But what if me and Jamie were to pass away – would someone else love her for all that she is…and is not, just as we do ? What if one day Charleigh is on the internet and sees a vaccination post about autism ? What if she sees her life as less valuable because of the way other parents weigh preventable disease vs. autism as if the outcome of either would be a death sentence ? What if teachers only ever see her for what she cannot and miss out on all that she can ? What if the world is cruel to her?

What if I am failing her as a mother?

This is the ‘what if’ that has me sobbing on the highway most often. The truth is, I don’t know what I’m doing. I have no idea if the therapy and choices we make for her on a daily basis are doing her service. My advocacy knows no limits, I would go through fire to get her what she deserves but in what direction I advocate is a constant struggle.

I don’t have autism, and while I take my cues from self advocates who are, navigating a world I’m unfamiliar with often leaves me feeling like I’m one strand away from unravelling our lives. Good choices are only truly good in hindsight and when your shaping little lives this leaves little consolation.

For now, all I can do is hope that the choices we make today help Charleigh reach her goals tomorrow. I pray that I’m not messing this motherhood gig up too bad, and if i am…I pray she will thrive in spite of it. I dream on every star that the world will one day see what I see when I look into my beautiful babies eyes. I wish for the strength to make it happen. And in the meantime I allow myself to grieve the world I brought her into for even the mothers of oceans and hurricanes must face their own fragility when the world is quiet … if but for a moment.

All Oceans and Hurricanes

When Charleigh was born our entire world changed in all the best ways. She was born 7 and a half pounds, right on her due date, with zero issues. A perfectly average baby in every way. We didn’t know then but our perfectly average baby was actually remarkable. Charleigh was born with a superpower.

You see, Charleigh sees the world in ways most people don’t. She loves in ways many can’t. She lives in the way most people want to. Charleigh is a ‘stop and smell the roses’ kind of child. She loves intensely. No one is a stranger and everyone deserves a hug – not just any hug either but the ‘leaving on a plane’ kind of hug that you feel in your soul. You know which one I’m talking about. Charleigh is also hilarious but she doesn’t and likely will never understand sarcasm. She believes everyone means what they say exactly how they say it. Wouldn’t that be nice?

Loving her is all oceans and hurricanes. One minute your in the calm, enjoying the view of the chaos, the next minute you are the chaos. Waves and waves of emotions that have you gasping for air. Then the calm without warning. Part of her autism is not being able to regulate those emotions. She’s the wildfire and the water bomb. Life is intense for her and being a part her world is intense for us.

There’s never been a moment however when I’ve wondered what our life would be like or who Charleigh would be if she didn’t have autism. I’ve never wished for a cure or hoped for a miracle. She is our miracle. If our world is more chaotic because of her, I’m thankful for it.

We know the world won’t always be kind. I know that there is battles I’ll have to wage as her mother and tears she’ll have to cry as a child who fits just outside the box. There will be challenges and failures and questions. Some which I won’t ever have the answer for. I know one day she’ll ask me why she’s different and nothing I say will take away her pain. That’s hard. But I also know that one day she’ll see her differences as strengths. Her superpower as autism. Sure, she may be all oceans and hurricanes but the ones who change the world always are.

Happy ‘World Autism Awareness Day’. May we all be so lucky to know someone who sees the world in a way we never can 💙💙