September 26, 2023
Meet the Carers - Aleasha McCallion
Foreword - Written by Simone Brick
I have not had the pleasure of knowing Aleasha for long, yet. But it was clear from the very first reading of her nomination to join Relay for Respite just how passionate, generous, and loving Aleasha is. After only a few weeks of getting to know small parts of Aleasha’s journey caring for Arden alongside her partner, a few things have stuck out to me. First of all, her grace in acknowledging the hard knocks of life she has endured, without letting it dampen her spirits or stop her seeing the absolute beauty in the people and things around her. Then there is her clear passion for her work, the determination to tackle challenges head on, and giving so much time and energy already to help us in raising awareness for carers like herself. But most of all, her love for her beautiful boy Arden shines through everything she does. I can only imagine the challenges they have come through together. I hope through reading Aleashas words below you get a sense of just how hard, yet rewarding a caring role is - and how much the little things count.
The following was written by Aleasha McCallion and edited Simone Brick.
I grew up in a small rural town in Northwestern British Columbia, Canada, the unceded traditional lands of the Wet'Suwet'en and Gitxsan First Nations. A place of big skies, broad valleys, lakes, cold creeks and snow topped mountain ranges. I was an active kid, running competitive track and cross country races through to my teenage years, and stayed active through University. I remember thinking about the Olympics when I was younger but never did I think about an athletic pathway by the time I was a young adult.
In Uni I studied what I had always loved, which was clothing, fashion and textile but throughout my early career also worked a range of professional operations and administrative roles alongside entrepreneurial projects. I was incredibly fortunate to have some really exceptional and supportive professional mentors who encouraged me, including my Mom.
My partner, Shaun, is an Aussie that had headed over to Canada to snowboard and it wasn’t long after we met that we became a happy pair. As I lurched into my early 30s I was keen to see what I could learn and experience living abroad,so Australia was a natural fit for me to migrate to and pursue a masters degree alongside Shaun’s return home. Soon enough we were planning for a family, and were both filled with joy when we learned we were pregnant with our first.
Immediately before becoming a carer I was your average young Canadian abroad, working hard to build up a career, insofar as continuing to improve my skills and knowledge. I was organised and goal oriented; I had a lot of energy and passion but was also a relatively calm version of myself I think - although it's actually hard to remember!
Then came the exciting shift of becoming a first time parent and navigating all the changes that brings. When Arden was born he needed some time in special care and was eventually transferred to the NICU at Royal Childrens.
We were fresh new parents and weren’t sure of our roles and what was actually happening as far as the complexity of his needs then, nor what the future would hold. Within our journey, I can’t entirely pinpoint where I would say I became a full time carer alongside a first time mother, but it was somewhere between learning to breastfeed tiny baby Arden once we finally made it home from the hospital several weeks after he had been born, and advocating for a long-stay bed in ED so we could manage Arden’s uncontrollable seizures at 18 months.
Arden is a beautiful, happy boy who feels love, gives love and is loved. Arden lives with several overlapping disabilities and complex life limiting medical conditions, requires comprehensive 24 hour hyper vigilant care and has been in and out of hospital since he was born. His diagnosis includes profound autism (including non verbal) as well as a rare, severe and intractable genetic epilepsy within a group called Developmental Epileptic Encephalopathy (DEE) which is similar to Dravet syndrome but unique and doesn't have its own syndrome name. He is at a high risk of sudden unexpected death in epilepsy (SDEP) due to his seizures being uncontrollable or resistant to medications.
Over the years, Shaun and I have both taken time off work to be Arden’s main carer, and we’ve also both been the full time worker bee taking care of the family at times as well. Over time I’ve naturally become - and been required to stretch to meet the needs of the program manager, advocating for Arden’s holistic needs whether they be access to disability funding for developmental supports and therapy, medical referrals to extremely specific paediatric specialists or briefing emergency paramedics on the nature of Arden’s intractable seizures.
Shaun and my skills are quite opposite and complementary and we collectively have found a rhythm in our team approach which is in no way perfect. We joke that Arden chose extremely well with the two of us parents for his particular combination of complex and extensive needs. Broadly, and certainly not exclusively, I tend to try to stay ahead in the future planning and scenario readiness while Shaun is excellent at seeing the trees in the forest if you will and keeping an eye on what’s happening for Arden today at this moment. We were a two person team for many years and thankfully that is no longer the case. Arden is fortunate to have a range of people who love and care for his wellbeing and we like to say that they bring the sunshine.
Being a carer has certainly shaped me into the human that I am today. It has deepened my experience of life, as it’s made me take less for granted and stay in the moments of ease and joy more attentively. I feel things more fully now than I think I did before Arden. At the same time however, it has also made my life more isolated, maybe smaller in some ways but also broader and deeper. More simple, but felt deeply perhaps. Over the last 10 years it has also threatened my personal health significantly and literally aged me physically. Everything is impacted, incrementally but importantly - from my endocrine system, to posture, wrinkles, dental health, weight fluctuations,flexibility and strength. The physical demands of being a career are extensive and pretty devastating at times.
When we are in a period of relative stability, and when Arden’s health is generally tracking ok, I have a bit of time to reflect. Overall I feel very wise, although that is mostly due to the level of mental and emotional pain I’ve endured. Being the carer of a child, your child, who doesn’t have the same anticipated life span as other children, on top of complex disabilities that impact every part of his everyday life is a particular kind of wisening up I suppose. But it is this grief that I live with, which has taught me about the nature of life; the beauty and pain that can exist together in every day, and how we must focus on the beauty, joy and love so as to manage the rest. ‘Joy is the ultimate act of defiance’.
Practically speaking, being a carer has shaped every aspect of my life from my schedule, what professional jobs I can take on, where I can work, how much I can work/pursue my career, what car I drive, where we live, what type of house we need to live in. Also the friendships I can manage, friends who can handle the reality of our life, whether or not we see folks or get invited out to events - the list goes on. This is because our entire life revolves around Arden’s 24 hour schedule. We schedule and move according to his needs and how he is on any given day. We do not travel or take vacations often, if ever, as they are too challenging at this stage. Luckily I do love where we live! It is a fantastic and beautiful place in the world.
In terms of ‘a day in my life’, even thinking about describing that is overwhelming. Each day is both the same and different at the same time. The routine is extremely similar ie. 5:00/5:30 wake up and morning care routine (meds, feeding, toileting, dressing etc) including plenty of wonderful cuddles and hugs. Arden lives with profound autism so routine is extremely important as it assists with him understanding what he is doing now and next.
But each day then brings layers and layers of complexity. There is the direct one-to-one care and being with Arden 100% for each second, or watching him from arms length/ across the room while you quickly get something as he is extremely vulnerable to seizures at any time; and, alternatively cognitive confusion or simply loosing his balance, falling over or becoming disoriented. Then managing the extensive to-do list for Arden’s care, therapy (speech, OT, Physio), medical and school program. Communicating about his needs, condition, and diagnosis to providers, or teaching staff requires extremely articulate and patient communications at all times - it’s extensive and exhausting. Finally the constant switching gears from care mode, care program manager mode, to my professional job mode, to Aleasha mode (my life mode). It’s wild and often feels relentless all up.
On the whole, I wake up thinking about Arden, straight after being grateful that he made it through the night of seizures and he is there in his warm bed making noises for me to get his favourite shows. Even better if he will tolerate my cuddles and I might get him to giggle. I go to bed thinking about what he will need in 5 years, 10 years and who will care for him when he is a teenager versus a cute little kiddo. Who will care for him if me and Shaun get too old. Should we plan for a funeral or leave that to a later time, are we strong enough to do that now; these are rather consistent worries. Practical questions like how long will we be able to manage the balance of two part time jobs to pay the mortgage. Being a carer comes with considerable financial stress because this work is unpaid and often invisible, yet it’s also critical for so many people and their families.
I also have the most amazing time seeing the images we capture of Arden each day and post to his tinybeans blog which is shared with our family and friends between Australia and Canada. I look at how adorable he is and how hard he worked at Physio today, how deeply he smiled or clapped when he knew he did a good job and we are cheering him on.
One thing about being a carer that has surprised me is how much it has shaped me into a stronger, more resilient, more compassionate, and more self-aware person (I think and hope!). And how it’s absolutely brought me to my knees many times over and challenged me beyond my previous comprehension. I am full of pride, and ready to go at a moment's notice for whatever is needed. This role raises me up, asks me to be the best version of myself, use EVERY skill I have and some I don't - but I am also deeply weary of the limitless nature of the role.
This is where for me, running and walking long distances in the forest, fields or beaches has saved me. It helps me find myself out there, gives me space to remember who I am as an individual, process the mental and emotional challenges and breathe deeply. It’s a reset, it’s precious time and space to heal and soothe my being, nervous system, body, mind and heart. The physical exertion is great, the time in nature is absolutely life affirming and the rhythm of running is a balm for my grief. Past that, it gets pretty damn fun too!
When it comes to other opportunities for respite to process things, it’s mostly the thing of fantasy really. When a chance comes along you do your best to embrace it, and thankfully we’ve had wins along the way over the years where we’ve been able to get away for a long weekend to a respite like Very Special Kids. Also the occasional times Shaun and I simply get to have breakfast out are incredible. But when there isn’t an opportunity for Respite, you don’t often look for it. Best to keep on moving. I’ve found that running a little each day/weekend is a great example of finding respite in the everyday, as building the standard week to be healing is the best chance I’ve found to be okay and able to stick with the requirements of our life and Arden’s needs. This is because getting respite for two weeks could be lovely, but it’s pretty hard to heal fifty weeks in two - for anyone I think - so better to find the little respite opportunities in each week where we can. Also, looking forward to respite is wonderful if everything is pretty stable in your carer world. When things are rough though, a warm meal and your own bed for a few hours is the best vacation ever.
Some things I wish more people knew about being a carer are that we mostly need someone to listen to our rather isolating challenges - and be strong enough to hear them without having to solve them when we ask for a chat or open up randomly in the office corridor. It’s okay not to have the answers - we can work it out - it’s the isolation that is so stark. We walk around with A LOT of stuff and stamp it down to keep going, go to work, pretend everything is fine etc. If we are actually fine and having a good day we won’t need to open up, but if it’s a tough day - yeah, you might get an ear full for a couple of minutes and we just need you to listen. Also, the smallest gestures of kindness have a huge impact. Things like being invited to a long weekend away, no matter whether it is possible or not. Or extending an invitation to a child with a disability like Arden to a birthday party for your kid or just a play date. Inclusion fucking matters. Even smaller, popping over with a cup of coffee or bottle of wine and offering to empty or load the dishwasher while you hear us out. These small things will have a massive impact on making sure that the carer you know has enough gas in the tank to get through another hard day.