My Strong Little Journey: Mel & Arlo - A Very Special Story About Cerebral Palsy.
Hello there. If this is your first time visiting My Strong Little Body, welcome! My name is Alana and I am a paediatric physiotherapist from Queensland, Australia.
My latest project is this: My Strong Little Journey, and it has been such an honour and privilege to be a part of.
I’ve asked real Mums and Dads, with real experiences of paediatric physiotherapy to share their story with me (and you); to let their guard down, and tell it how it really is on the other side of the fence. What it feels like to be the “parent of the patient”.
Sometimes the journey will be nice and smooth and simple and all the loose ends can get tied off nicely. There is a beginning and an end. A cure even.
But more often than not, having a child with a health condition can be really complex and messy. It’s a long, winding road. It can be tough on families. I’ve asked these parents to tell their story how they would’ve liked to have told their own friends and family. What they would have liked to hear themselves in the early days.
What I do know is this; these stories, no matter how small, are going to be incredibly helpful and reassuring for families going through similar experiences themselves, and I am sure they will also be really valuable for therapists too. Giving us the opportunity to walk in their shoes, even if just for a moment, is a wonderful gift these parents are giving and I am so humbled these families have opened up to me like they have.
On the Eve of World Cerebral Palsy DAy,
it gives me great pleasure (and an absolute thrill to be honest) to introduce you to today’s story-teller, Mel Dimmitt. Mel is the author of the incredibly uplifting “Special; antidotes to the obsessions that come with a child’s disability”.
“Inspired by professional writer Melanie Dimmitt’s own crash-landing into special-needs parenthood, and shaped by her conversations with parents of children with wide-ranging disabilities, Special shares real stories, expert guidance and simple coping strategies to soothe anyone whose life has taken an unexpected turn.”
so without further ado, LET’S HEAR ABOUT MEL AND HER SON ARLO’S STRONG LITTLE JOURNEY, AND HER EXPERIENCE AS A MOTHER, HAVING A CHILD WITH CEREBRAL PALSY.
Hello, My name is Mel
and I live with my partner Rowan and our two kids, Arlo (4) and Odette (2) in Bowral, a very pretty town just over an hour’s drive south of Sydney.
Before Arlo came along I was a well-slept person with zero appreciation for the abundance of solitary time and hot teas at my disposal. Having a baby wasn’t something I particularly wanted to do until I’d been with Row for a few years and thought it might be nice to make a mini version of him.
We got engaged, decided to ‘see what happens’ and a few weeks later I was watching two lines appear and sprinting to the chemist to buy another 10 tests to pee on. I didn’t have many expectations around what parenthood would be like, but I did think it would somewhat resemble a Huggies ad. Boy was I in for a rude awakening.
Arlo was born by way of an emergency caesarean, during which he was deprived of oxygen.
Mel, Rowan, and their navy-blue eyed boy Arlo.
I was put under general anaesthetic so my first memory of his birth is my bed being rolled into the NICU, where we’d spend Arlo’s first week, and having a beautiful, navy-blue eyed baby placed on my shoulder.
He stared straight at me. To this day, the kid has the most engaging, gorgeous blue eyes.
With a grand total of zero experience of babies between us, Row and I didn’t notice anything unusual about Arlo at first. He breastfed well and was generally a happy chap. His limbs were a bit stiff, but this was swiftly Googled away as “tone that will disappear over time” as it must for some babies.
It wasn’t until Arlo hit the three-month mark without hitting any three-month motor milestones that we knew things weren’t going by the book. At six months he received his diagnosis of cerebral palsy from a kind paediatrician who told us Arlo would be like any other kid, he’d just need to spend an hour or two a day doing therapies.
‘In your bubble, at home, everything will be great,’ he said. ‘It’s only when you’re out in the world, having to explain your child to other people, that it can get tricky.’
True that.
A young Arlo learning to walk with his physio using a specialised paediatric walker
In the weeks that followed I clung hard to denial (I can’t tell you how many times I Googled ‘cerebral palsy misdiagnosis’) and cried a lot. We had oodles of support from family and friends but what helped most, in those early days, was Arlo himself. The kid has some serious spunk and smiles with his whole self. It was hard to stay sad when he was around.
I didn’t know anything about cerebral palsy and still don’t know much
– only that it covers a broad range of movement disorders. Arlo has quadriplegic cerebral palsy. For him, this means all four of his limbs are affected. He can’t sit, stand or walk unaided, but in his star-spangled Second Skin suit and Rifton Pacer gait trainer, he can get around independently (checking himself out in every reflective surface along the way).
Arlo is non-verbal which means he doesn’t yet use words to communicate. He makes himself and his needs known through eye contact, smiles and sounds. He also uses a snazzy device that allows him to speak using his eyes (and be a cheeky little bugger at that – ‘yuck Mama!’). Arlo has to be careful with eating and drinking, so we serve him up puréed meals and thickened drinks.
A team of fantastic therapists help us support Arlo and the very first member was Arlo’s physiotherapist, Sarah, who we met a couple of months after we got his diagnosis.
In the emotional shit-storm of those days, Sarah was the ultimate silver lining.
She got to know Arlo and let his passions (Teeny Tiny Stevies songs, melodramatic sneezes and Olaf the snowman, to name a few) guide his therapy. At every appointment, she would also ask how Row and I were going. On days when I looked like I needed a hug, she gave me one.
In our early sessions I would grill Sarah for specific details about Arlo’s future and she always kept things broad and hopeful. ‘Will he sit by the time he’s two?’ I would probe, having read somewhere that this would determine whether or not he could walk. ‘He might not sit by two, but he will sit,’ she’d respond. ‘We have kids here who didn’t sit until they were four and they are now walking.’
When I told Sarah I was writing a book about the experience of raising a child with a disability she was incredibly supportive, connected me with some of my interviewees and gave me feedback on an early draft. Right before Special was published, she even whipped the glossary into shape for me.
Sarah mastered that tricky balance of being both incredibly professional and a dear, trusted friend. She still is. Since starting her own mobile service in Canberra, called Little Engines Physiotherapy, Arlo sees Sarah every week via Telehealth. Their relationship has gone long-distance!
One of Arlo’s physio sessions before they went ‘long distance’
Physio is always hands-on with Arlo so Row and I have needed to become (very amateur) physios ourselves. Covid hit right before Arlo’s first physio intensive, so we did two weeks of three-hour-long daily sessions via Telehealth. It was a tough slog but the results were awesome. Arlo’s got the strength and (meatier) thighs to show for it.
We’ve since moved out of the city so nowadays most of Arlo’s therapy sessions (physio, speech, OT) are via Tele-health with his team in Sydney.
Arlo loves a screen so he’s very responsive to this format – and Odie enjoys making the occasional cameo appearance, too. Arlo’s appointments are now seamlessly incorporated into our home life and it sure beats schlepping around Sydney.
Between Arlo’s schedule, Odie’s two-year-old-ness and the intensity of Row and my jobs (both of us work in journalism at the mercy of deadlines) we barely get a second to scratch ourselves. But we’re happy. We laugh a lot and love where the twists and turns of the past few years have taken us.
When we first got Arlo’s CP diagnosis I desperately wanted to know that he would be okay. That we would be okay, as a family.
I wish I could go back and tell that terrified new mother that it WILL be okay. Your life will be full, interesting and more fun than you ever could have imagined. That kid of yours is going to show you who he is and what he needs. All you have to do is follow his lead.
Mel, Rowan, Odette and Arlo today. (Pretty dang good lookin’ family if you ask me).
A note from Alana:
I can’t tell you how grateful I am to Mel for sharing this beautiful (and annoyingly well written - she makes me look bad) insight into her family life. This blog is just a snippet of what she shares in Special and after devouring it myself recently, let me tell you I now have my first offical writer crush.
Huge fan-girl here Mel.
Special is a book I randomly stumbled across via good old social media a few weeks back, and I think I will forever be grateful for that stumble, as I now know I have something I can pass onto the many families I see in clinic, those with heavy hearts, struggling with exactly what Mel describes; the obsessions that come with having a child with a disability.
Only a parent who has gone through the experience themselves can truly understand and write with such heart and hope, about having a child with special needs.
For families whose lives have taken an ‘unexpected turn’, or for any therapist wanting to better understand the families they work with, I can’t recommend Special enough.
