In her own Time and Space

My daughter gave me a Mother’s Day card with one of those lists – 5 Things I Love About Mum. One of her things was ”She got me assessed for autism”.

If there is anything I can contribute to the voices in April for ’Autism Awareness Month’, it would be this. A diagnosis does not have to pathologise our children. It can be a gift.

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Every other week, it seems, I read an article about adult diagnosis.

‘There’s a sense of relief about it and a sense of mourning. Not because I don’t want to be who I am, it’s that I wish I’d known sooner so I could have understood exactly why things were rolling the way they were rolling.’ (Melanie Sykes)

‘It’s been a huge relief, it’s really helped me understand why I am the way I am, why I’ve struggled throughout my whole life.’ (Christine McGuinness)

‘I wish more than anything that I had known about my ASD when I was a kid, just so I could have learned how to look after my own distress, instead of assuming my pain was normal and deserved.’ (Hannah Gadsby)

A diagnosis does not have to pathologise. It can be a gift.

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Before we ever attended an assessment or appointment I drip-fed awareness about neurodiversity in our home. We talked casually about autism and ADHD and all brains being beautiful. We talked about gifts and challenges, differences in how we think and experience the world, misunderstandings that can occur. It was casual, but intentional. Look at Greta. Dave Pilkey. Friends. People in our communities.

Even if you have the most neurotypical family in the world, this is something you can do. Talk about neurodiversity, mention that people are autistic (not as their defining trait, but an interesting one), model an affirming way to talk about it, casually, but regularly.

You may need to do a bit of work first. I’m still learning, myself. Humility and curiosity are great places to start. Let’s presume we don’t know what we’re talking about. Most of us have picked up misinformation and misconceptions and a negative narrative. We can be patronising and damaging with our good intentions.

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The Maori word for autism is Takiwatanga, it means ‘in his/her own time and space.’ I think this is a beautiful way of conveying that autism is a particular internal experience that relates to how some people experience and understand the world. It invites us to make room.

To make room for the many ways there are to be in the world.

To make room for the many ways there are to think.

To make room for the many ways there are to connect with and understand each other.

There is much to celebrate. And there is much we miss out on if our definitions of connection and empathy and being social are too narrow. Spend one evening around our dinner table and you could probably tick a few boxes on an autism check-list about our daughter, but I guarantee you, you will have laughed and learnt something new, you’ll have a story to tell when you get home and you’ll feel closer to our whole family as a result of this girl.

We make room, as well, for sensitivities and needs. We accommodate. We realise, perhaps, that many of these are triggered by our insistence that everyone learn to fit neurotypical ‘time and space’, by our fast-paced culture, by our places of work and education and worship which are not designed for people who experience their environments differently.

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On the way home from her cousin’s 18th birthday celebrations, my daughter asked if her cousin was autistc. During the day people had gathered to say some words about his character, affirming the good we see in him. When I asked what made her wonder if her cousin was autistic, she answered that it was the things people said about him. There were some recurring themes about his individuality, his authenticity, admiration voiced about his unique way of being and the courage it can take, to be yourself.

My daughter heard that and wondered: Autism?

Beautiful.

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It’s April. Let’s honour honesty, detail, big emotions, inquisitive minds, special interests and sensory preferences. Let’s notice when the words we say and the environment we provide causes overwhelm in others. Here’s to more than awareness. Here’s to the kind of acceptance that provides space and safety nets, that takes time and effort, that is beautiful and enriching, that makes room for us all.

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Links & Resources

The best place to learn about being autistic, is from autistic people. Jude Morrow is an autistic author, speaker and mentor from Northern Ireland. This TED Talk is a good introduction. His most recent book is called ‘Loving Your Place on the Spectrum‘. Following Jude Morrow will lead you to more autistic voices, of which there are many.

I love this comic strip explanation of how varied the spectrum is.

Uniquely Human The Podcast seeks to expand the conversation on autism and neurodiveristy by amplifying the voices of autistic individuals and thought leaders. It is hosted by autistic author Dave Finch and Dr Barry Prizant (author of ‘Uniquely Human – A Different Way of Seeing Autism‘). It is brilliant.

I am an Aspie Girl by Danuta Bulhak-Paterson (recommended for girls aged 5-11), helps girls ‘to understand their diagnosis, recognise their unique strengths and celebrate their differences, and find ways of coping with difficulties.’ Don’t be put off by the fact it is a picture book and says ‘for young girls’ on the cover – it communicates a lot of wisdom beautifully.

A few local autism consultants whom I follow and am impressed with are Eden Consultancy, Autism Consultant NI and Capri Support.

On Not Skipping Seasons

November has been a show-off this week, but the shops are rushing us toward Christmas.

What can we do? Spend more time outside, I guess, look a little longer. The morning sky, the landscape, the leaves on the trees and under our feet.

Things are changing slowly, but spectacularly. It’s a little colder, a little darker. It’s very Autumn, still, a hundred shades. A season in itself. It will take its time.

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My daughters are a little older, but the world is rushing them beyond their years.

It feels as disorientating to parent as the visual unease of Christmas aisles too early. We are surrounded by messages that we are here, now. Yet we feel it, in our guts, that we’ve skipped a part? No longer young children, but not yet teens, a hundred shades in between.

What can we do? Spend more time outside, of course. Say no and not yet. Say yes to the things that require more of us, but engage in their youth. Make it a season in itself. Let it take its time.

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We search for leaves and Autumn mists. We search for books and tv shows that fit the season. Kate DiCamillo. The InBESTigators. (Tell me more, please). We honour the seasons and let them last.

Winter will come, along with all our children’s seasons and stages of life.

Today is for wellies and kicking leaves, because it is Autumn and because they are young.

🍂🍁🍂

Peace Be With You

Easter 2021.

I register our family for church, Easter Sunday morning. Then unregister. A lack of peace around decision making is a common occurrence these days.

I determine to mark it in some simple way at home. We’ll think about Jesus over breakfast. We’ll go outside early. We’ll connect with church online.

Maybe we would have, had breakfast not began with wailing, my daughter spilling hot tea over both her legs. Later, assured by google that my first aid had been sufficient and the drama over, I discover my husband has escalated wiping up the tea to washing the entire floor.

At this point I’m not looking for Jesus, or community, I’m just looking for a place to sit down.

All 3 elude me on Easter morning.

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I manage to hold on to one phrase when I finally watch my church service. One refrain for Easter 2021. One picture, sticking with me daily.

Jesus came and stood in the midst and said to them, “Peace be with you.”

I love it.

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Listen, Mary Magdalene is my favourite. Earnest and persistent, showing up, bearing witness. I want to be like her. An early-in-the-morning Easter girl. Sometimes I am.

But when I’m not? Jesus stands in the midst. What a relief.

Though the doors were locked.

Though the tea was spilt.

Though our mojo was gone.

Jesus came and stood in the midst.

Though we are weary.

Apathetic.

Nostalgic.

Distracted.

Hiding.

Doubting.

Stressed.

Jesus comes and stands in the midst.

I love it.

My child will be disadvantaged. Or will they?

I slip in, occasionally, my thoughts about education or upward mobility. I slip them in vaguely, gently. “We prefer climbing trees to ladders.” I don’t say much more than that.

A year ago I started this blog post, trying to say more than that. I didn’t get very far. It’s easy to say “I’m not a fan of selection”. It’s harder to explain why and consider what to do about it.

My daughter was in P5 and I could see the AQE looming, unwelcome, on the horizon. It’s impossible to escape the language and panic surrounding it all and our kids pick it up even if we, the parents, are “not a fan”. We can refuse to hold performance and results as values in our home, but someone else will speak them loudly.  Next year will be the “big year”, our children are told, the “important year”.  Have we got a tutor yet?

I have overheard it in the hairdressers – and a dozen other places – the tutor conversation. The parent claims to be reluctant, but they have been told that everyone else gets a tutor for their child, so if they don’t, their child will be disadvantaged.

Or will they?

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Jonathan Auxier (the New York Times best-selling author of Peter Nimble and His Fantastic Eyes) was pulled out of school for a year by his mum because she panicked that he didn’t have a love of reading. He knew how to read, but he didn’t enjoy it very much. A love of reading was non-negotiable to his parents, so he was ‘home-schooled’ for a year. He read for 3 hours a day and otherwise remembers it as a very ‘low work load’ year.

Was he disadvantaged?

Depends on the advantage you are aiming for.

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We hear from a friend of the stress of getting their child through the AQE, replaced the following year with the stress from the pressures of life at the sought-after Grammar school.

Is this an advantage worth panicking about?

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There are good arguments on both sides of the selection debate, I can see them both. It’s the language I hate, the importance it is given. The way it dominates calendars and prayer lists and talk radio. I hate how fear is spread and our own child’s advantage guarded and fought for.

My daughter is in P6 now and the disruption caused by remote learning, with no return date in yesterday’s announcements, means everyone is worrying about the P6s. They are missing out.

I see this a different way. Every morning my daughter hears her teacher’s voice and sees her face and engages with the most ridiculous enthusiasm in the activities set up for her on SeeSaw. She responds with written work, videos, voice recordings and ICT skills which I marvel at. I doubt there is anyone in the world more exited about Tom Crean’s expeditions to the Antarctic, at inventing her own Viking goddess or measuring how far she can roll a potato across the floor with her nose in one minute.  Will she be tested on this? Frankly, I do not care. Her love of learning is intact, her creativity is being encouraged, her interests affirmed. What do I want for her? This.

There are hard things right now, worth worrying about, different for each of us. There are uncertainties, impossible to predict. The AQE can wait. Maybe, it can be rethought.

‘Lend your voices only to sounds of freedom, no longer lend your strength to that which you wish to be free from.’ (Jewel)

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PS For those of us who identify as followers of Jesus, we are just not called to be part of a culture of upward mobility. As Shannon Martin says “Jesus promised the opposite of what the world offers like a prized show pony… His life on earth was a decades-long exercise in rescuing us from the things we think we want.” We are not to fear scarcity, and we are certainly not called to spread that fear at the hairdressers.

Our Days

In January, Liv started publishing a newspaper, The Daily House. It landed rolled up at our bedroom doors with a thud. Breaking News! ‘IMOGEN ARNOLD TURNS 8!’ ‘CHRIS ARNOLD PACKS BOXES!’ Full Story Inside! There were pictures, quotes, a ‘Saturday Star’. It was a lovely example of Lockdown creativity and the beauty of boredom.

After a few days though… ‘Breaking News! NO Breaking News to report!’ Inside the paper informed readers there would be no more editions until Friday. (Or ever, as it turned out).

There is only so much you can write about 4 people and their lives in a small house, mid lockdown. And also, isn’t this how it’s going for all of us, this time around? We try to channel our Spring 2020 attitude, step back into that rhythm we found of making and exploring. We can’t get going, or it fizzles out. We have an idea, but we can’t be bothered. Little legs that cycled for endless hours, now object to walking around the block.

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I’ve been thinking of that Annie Dillard quote, ‘How we spend our days is, of course, how we spend our lives.’ I have always loved these words, they have always seemed important to me. Challenging and comforting, both.

In this weirdest of seasons, though, it seems important to release ourselves from many of our mantras and goals, from how we assess or value our days. Let’s not count *today* in the story of our life, with its excess of screen time and crappy lunch. Let’s not count any of January, actually, or next week.

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Something beckons, though. The sunny morning, the Holy Spirit, that wise old quote.

We were not made for life on pause, for one endless duvet day (as lovely, and necessary, as those things sometimes are). We were not made for frantic, fragmented multi-tasking – tethered to devices for our work and our children’s education.

We go outside in the early morning, or late at night. We create a little space. We are intentional about something small. We name one thing that matters. We let it shape our days.

Back to School 2020

I felt a little sad looking at the photos on my phone of the past 5 months – a continuous stream of the girls on bikes and scooters, by the river, half-way up trees. It was a pretty epic classroom.

This morning their uniforms felt all scratchy and wrong. They have lived in leggings and T-shirts and, sometimes, just pants.

Beside my breakfast I had a post-it note of times and reminders to correctly navigate drop-off. Among the labelled Pritt sticks in their (disposable) supplies bag were labelled hand sanitisers. Everything felt a bit rigid.

We followed the rules and the footprints toward school and were welcomed by music and a sea of bubbles.

‘You are the peace in my troubled sea’ was the line we turned the corner to. After quick goodbyes they walked on in amid the bubbles as if they had just won a prize. Which they had, in a way. 

This is a place of pretty epic classrooms too.

July

We had a week’s holiday, an hour from home, and it was everything we needed – a change of scene, cheese toasties and ice-cream, the sea.

The play parks reopened and set the tone for the following week. They have this renewed allure, after months of being chained shut. My daughters yell for the hand sanitiser then take off in delight.

We check in on our friends by the water, count heads.  2 swans, 5 cygnets, 2 rats. We pause in admiration. We rush past in disgust.

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We haul 3 bags of books back to the library, return them to the bottom of the stairs, wave up to our beloved librarian at the top. Are you ok? Yes we’re ok.

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We own masks now – black, denim, leopard skin, neon. The girls rock theirs while we adults self-consciously avoid our reflections. It adds an extra layer of awkwardness to the grocery shop, but this is the season we’re in. The next right thing to do. (We think).

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Every certain  rhythm of the year has become uncertain. The sign above the stationary and lunch boxes in Asda says “School Shop”, instead of “Back to School”. We start to sort out uniforms, think about school shoes but our checklists have been replaced with question marks, every tentative plan is ‘subject to change’. 

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I remember my husband texting me the first indication that schools would close for at least 16 weeks. It seemed impossible. Unbelievable. There were horrified emojis exchanged. Now the return feels hard to imagine, that we might emerge from our kitchens to drop our children off at school. (To drop them anywhere).

August has some boxes filled on the calendar, it feels like we might turn some corners, subject to change. 

Another Month

We slipped quietly into July.

Tuesday: last day of home-school.

Wednesday: first day of home-holidays.

We marked it with a chippy.

I’m wondering how to mark the weeks ahead? How to upgrade them. How to turn another day into a holiday.

We are not going to Switzerland. We are going to the park, again. It’s disappointing.

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I’m keeping an eye on my tree climbing daughters when a passer-by nods approvingly, says “I didn’t think kids did that anymore”. It makes me feel good. It’s not Switzerland, but it’s something.

Later my daughters start rescuing sticks, fake-panicking that the sticks are dying. They yell out symptoms, make diagnoses, rush them to surgery. There is space for this, in these days we aren’t sure how to fill. 

We visit the cygnets and find them with their mother. They have grown a bit. We consider whether or not they deserve to be called “ugly ducklings” and decide they do not.

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We slipped quietly into July and I have been reflecting on June. I have been sitting with these questions:

Where did I see God in June? What’s one thing I’ve learned? What is the best thing that could happen in July?

It’s another way of marking the calendar turn, I suppose. It’s a way to close and a way to open. To pay attention. 

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It rained hard today and there was no tree-climbing or stick-surgery or cygnet-spotting. 

There were pancakes and baths and, in a minute, early nights.

There were things, today, that marked it as Sunday for us. I love these things.

The school holidays stretch before us. They do not need upgraded.

Let’s look for sticks and for God and may we be blessed with the occasional nod of approval.

Week 10 and a half

Photo by K. Mitch Hodge on Unsplash

 

The daffodils are gone but the world is still yellow, with buttercups.

For the first time since lockdown we find the park strewn with rubbish. The bins overflowing, the grass dotted with plastic packaging, chippie papers, tin cans.

We see the heron, of course. Always in a slightly different spot. He must see this place from every angle and perspective.

As for us, we vary our route but it’s  the same footpaths, the same fields and gates and river. The same day, on repeat.

We double check what day it is, what week number, as if they can no longer be differentiated

But I think of the words my friend Libby sometimes quotes, “No man ever steps in the same river twice, for it’s not the same river and he’s not the same man.”

Our perspective changes. We see a new angle. It is better. It is worse.

We are generous in how we view others, and then we are not.

We get used to things. They change again.

We are accepting and content. We count our blessings. We take it day at a time.

We are suspicious and outraged, we measure and compare. We are afraid of days to come.

We pay attention to any strange gifts this time has given. We note which cancellations made us feel lighter, freer. We know, now, what we do not miss. And what we do. We vow to choose more wisely,  “when all this is over.”

Outside of our control to choose, though,  the river journeys on. The landscape has shifted. Some things will not return.

The daffodils are gone but the world is still yellow.

I wonder where the heron will be hiding today?

 

Week 7

‘Life can only be understood backwards; but it must be lived forwards.’

[Soren Kierkegaard]

Some days, the things that always help don’t help.

Bad moods prevail outside. The birds sing and the the girls argue by the river. We can’t settle into our books. Quiet time is not. Even bathtime sours.

We’ve had better days, and worse.

Our behaviours vary.

Things rise internally, different for each of us.

There is a lot to learn, different for each of us. We pay attention, or we numb it all out. There is no quick solution, for the world, or our family.

‘It’s going to take a village, it’s going to take some time.’

There is no quick solution, no perfect posture we can hold day after day. I’d like to adopt the healthiest attitude, follow the right routine. I’d like a slogan printed on a hoody,  a verse, a totem, one word. I’m thinking of a new morning practice, maybe that will be the thing?

But there is no one thing. There are words that help, and tools we can use. There are practices that serve us well. (Sometimes). There is an invitation, ‘Come to the waters’. There is nourishment, physical and spiritual.

There are better days, and worse.

It’s going to take some time.

‘This side of the street /All the work is my own /Oh, but I don’t have to walk it alone

No I turn to the gold rule/ When I get stuck in my ways/ When I look at the impasse/ And start to lose faith

Every stranger is a neighbour/ I just don’t know his name/ I have to love local/ For the world to change.’