20th March 2026 • My Family Our Needs

For this year’s World Down Syndrome Day, Liz Arriens-Troy reflects on routine, isolation and rethinking connection, and explores how life can feel both contained and deeply full. In unexpected ways, moments of understanding, acceptance and shared experience can bring us together against loneliness.

Even if it might feel that way sometimes, we are not alone.

“So the parents don’t leave the house very often at all?” I ask.

“No,” my friend replies.

Two separate people who work with families with children with additional needs have told me this recently.

“Really?” I say.

One of them tells me that parents have expressed to her that it’s hard to come to an evening event that she has put on for parents and carers of children with additional needs, and that the fact they make it out to it is huge for many of them.

“Oh me and Kev are fine there,” I think to myself. Perhaps as I get to go out whenever in the evenings and I do.

Yet, in our world there are the weekend ‘Groundhog Days’ as I call them.

Often at a weekend, if Kevin is working at the shop that we have on the high street of our close-knit Devon town, Coraline and I follow our TV, music, walk, TV, music, walk rhythm for the day.

As Coraline, who is eight with Down’s syndrome and suspected autism, doesn’t engage with typical activities and can get actively dysregulated (a party, a soft play, farm animals), I stick to music at home, TV at home and walks. We have three familiar walks we do where she knows the exact routes which really helps her ability to walk. She began walking at maybe five years old or so.

I’m sat inside watching The Lion King again with Coraline. It’s familiar and routine for Coraline and immensely gratifying for her to watch it every day. Every day for a year now. Kev knows to belt out the words before they come now.

On days like this, I’m inside and I long to be outside. Engaged. I twist my head from the TV and look out the window at our garden and the world outside. Coraline and I don’t go to the shop where Kevin is, as Coraline just wouldn’t settle there or tolerate it. Sometimes Kevin and I switch in and out of who is working in the shop. I wheel Coraline to the shop in her pram, and he wheels her home. We swap. I sometimes walk her up the street instead of taking the pram. We use the pram as she can get tired due to her hypotonia (floppy muscles) and also so we know we can get there and home smoothly. A walk up the street is a case of managing – getting from A to B, keeping Coraline moving and avoiding her sitting down refusing to move.

It is a familiar walk and if I say the words “dad…shop” she knows where I mean. I have to sing to her to keep us moving. I long to go into the shops on the high street with her. I don’t take her into shops. Too hard. A local friend said to me one weekend, “I wanted to stop and say ‘hi’ but I could see you were very determined in getting where you wanted to go”. Coraline wouldn’t have tolerated me stopping singing anyway. The lady was right.

I’m not lonely on these Saturdays, but I miss doing things. I watch other children and the ease at which they run, jump and sit or weave in and out of the Saturday market in town, or the clubs or how they pop into cafes for lunch.

We don’t go on playdates or to parties. We don’t know who’s in Coraline’s class at her special school apart from one girl. How do we not know? We just don’t. She’s picked up in her school minivan, and we hear about her day in written comments in her home/school book and from the minivan driver and escort. We love these comments though. They make us smile.

At the great local mainstream school which Coraline attended for three years before changing to her equally great special school, she’d be invited to parties. We’d stay maybe 15 minutes. I’d feel on edge throughout. It wasn’t routine, she didn’t engage, she needed particular music to regulate. The other kids running in circles together in the town hall. Us to the side. Hypervigilant, my nervous system on edge before we’ve even walked in the door. I’m not lonely. Other times we choose not to go at all. We have always based it on what we feel is right for Coraline.

Sat in a supermarket car park Googling ‘SEN parent exhaustion’ on a Sunday whilst Kevin goes in and I sit in the car with Coraline as it’s too hard to all go in together. I’m not lonely.

The same routine whatever the weather after school – a homemade ice lolly come winter come summer, The Lion King, dinner, bathroom, bed. It’s fixed. We don’t go out after school.

Those parents who my two friends told me don’t go out – perhaps I am one of them to a degree? I’ve watched more episodes of The Lion King than I care to imagine and still will be watching it in the months to come. Friends post photos of engagement, fun, laughter, chatter on social media. Our world is silent and is repetition, routine. I’m not lonely. Coraline is nonverbal. But Coraline’s smiles and laughter crack through. Kevin comes through the door after his day at the shop and immediately has me laughing.

Kev and I have wide circles of friends. Our lives are full. It’s just those Saturday days where he’s in the shop and Coraline and I are at home. I find it easier not to make plans due to what Coraline does and doesn’t engage with and because it relies on me to navigate it. Often family or friends’ kids might be in her orbit, but she does not interact with them. On occasions out with friends and their kids I watch their fingers grasp crayons, use cutlery, and I feel separate in our reality.

But, you know, this voice I’ve been writing in, it’s the me of last year.

This year I am in a different space. One where I know that connection doesn’t have to be what I say it has to be. What if connection is in everything? In the messages we receive, the shared understanding from friends, in starting the conversations about how our lives are, in the absolute laughter Kev and I share after a day and in Coraline’s own joy in her day. In fully inhabiting our lives with Coraline as she goes around banging the radiators, banging the walls because doing that brings her great happiness. Seeing her utter love and contentment, regulation and calm when she’s watching The Lion King. And those times outside of The Lion King when I go out to meet my friends, which I do, and I know I am lucky I do, are supremely connected for me, as they’re all the more meaningful? I can find connection in our life just as it is, on Coraline and my Saturdays together.

A message pops into my Instagram one evening this Down Syndrome Awareness Week as if from nowhere: “You know we run an art club at the town hall on a Saturday which Coraline may like to come to. There’s a quiet session after lunch.”

I reply, “We are working with Coraline’s OT to see if she can hold a paintbrush and do some mark making. She doesn’t do any mark making currently at home as she’s not quite developmentally doing it yet. But the minute she is, I’d love to bring her along thank you”.

The reply comes, “Mark making and brush holding is completely optional at art club, as is producing anything. At art club you can be an art kid just by being in the room and having a look around, even for just a few minutes”.

I sit back in my chair. Wow. Just as I have learned this past year as I have shifted, connection doesn’t have to be all day long. A few minutes of connection is as valuable. An exchanged word. A kind email. A settling into our life just as it is and knowing it’s how it is and that’s OK. That many other people have similar lives. Connection is customers in the shop asking after Coraline, telling us their own stories.

What is the definition of loneliness? I’ve not looked it up. I certainly wasn’t lonely in the traditional sense over the past seven years, before my perspective shifted to contentment in our routines this year. What I did feel sometimes was contained, wistful, wishing I was doing more together with Coraline.

Nowadays I think of Coraline and of my doing what she loves with her and of me being really present in it. By us doing what she loves she knows I love her. For her, loneliness may come in not being understood. In somebody not ‘getting her’. And I think by us all ‘getting’ each other and our lives, and by sharing them and all validating each other, we can truly inhabit the theme of Down Syndrome Awareness Week this week, #TogetherAgainstLoneliness.

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