Muddy Meets: Katherine Kowalski, writer and inclusivity advocate
Katherine talks to Muddy about family life with disability and neurodiversity, her campaign for Changing Places toilets and her favourite accessible beaches.
This interview was planned to celebrate all the varying experiences of motherhood ahead of Mother’s Day this Sunday, but in these new strange times, we changed tack a little, discussing what we can learn from each other to survive this next few months.
Katherine is mum to Beatrice (11) who is autistic and Lawrence (9) who is a medical mystery, a wheelchair user and non-verbal communicator. She is a freelance writer and PR, and the author of the blog On The Mother Hand where she shares reflections on life with disabilities.
So first things first, what’s your name and where do you come from?
I’m Katherine, I live right by the beach in south-east Cornwall with my two children and husband Gavin. It’s the glorious forgotten corner!
We moved here in 2012 when my son’s difficulties and disabilities were coming to light, and we had to make a major change in how we lived our lives in order to best care for him. We knew that being by the sea would bring solace, and inspiration, even if times were dark. It’s proved to be a lifeline for us all. Lawrence loves nothing more than a walk in his beach buggy by the shoreline watching the waves lapping on the sand.
We didn’t know when we moved here that my daughter was autistic. Looking back, and knowing what we know now, I think she would have really struggled in the city life we used to have – constant sensory overload. Here by the sea she has the space and calm to better manage her sensory needs.
Can we ask, what’s the situation with Lawrence?
He has developmental disabilities that mean he isn’t able to walk or talk. He also has epilepsy. But like many children who have developmental disabilities, he has no overall diagnosis. No reason has ever been found.
He’s had his whole genome sequenced, to look for changes or differences that might indicate a genetic syndrome, but nothing has been found. He’s also had brain scans, lumbar punctures, numerous blood and plasma tests, organ scans, the lot!
Am I right in understanding that he has no diagnosis? What additional issues does that cause?
We’ve had to embrace the uncertainty this brings, and celebrate him, because we have no idea what the future holds. It also means there’s no clear pathway for monitoring potential health difficulties in the future, because no-one knows what they might be. For example, if he had Down Syndrome, there are known health risks that would be monitored routinely. For Lawrence, there’s no such thing.
It also means he never fits in a box. Filling in forms becomes increasingly challenging!
Tell me more about On The Motherhand
I started my blog as a way to connect with others in similar situations and to help advocate for inclusivity and accessibility in daily life. When we were first realising that Lawrence had developmental disabilities, I wanted answers but I also wanted to know that it would be ok, no matter what challenges we might face. It was reading other people’s blogs that gave me that feeling. So I wanted to do the same, to give a little back, be honest, but also to give hope.
There are also many readers of my blog who don’t have a disabled child and for me that’s just as important. I was really scared of disability before we had Lawrence. I probably wasn’t as inclusive or accepting as I could have been (even if I thought I was), so connecting with the mainstream world and showing that we’re still part of that, we aren’t ‘other’, was really important too.
Any tips for people who don’t have direct experience with disabilities – who might feel uneasy about bringing up issues they don’t understand?
You know, it’s really lovely when parents aren’t embarrassed to let their children ask questions. Because children are direct in a genuinely inquisitive way. Don’t hush them and move them along.
Children are brilliant conversation starters, even if the questions may seem naive or awkward, please don’t be embarrassed when they ask. Lawrence absolutely loves it when other children notice him and talk to him!
Have you learnt anything surprising on your mothering journey so far?
So many things!! But mainly that we’re all a whole lot happier if we learn to embrace uncertainty, no matter what that might be. I used to thrive on controlling and planning everything but being a mother in often extremely uncertain circumstances has taught me that sometimes that just can’t be done, and that it’s possible to ride through the anxiety that might bring and to come out the other side.
In these strange uncertain times that we now find ourselves in, have you any tips that might be helpful to others now suddenly worrying about the health of loved ones?
I know there are many many parents who are worried about their children’s education, attainment and mental health right now. We all want the very best for our children and it’s hard to come to terms with their normal rites of passage being interrupted or curtailed. It’s totally ok to feel sad about that, to feel shell shocked and lost.
If I can share anything that might give hope or comfort it would be that there isn’t one track, or one timeline for achievement and there will always be a way forward, even if it isn’t the one you imagined. Often it might be a better one for your child, in the end.
In more usual times what kind of schooling do your kids receive?
Lawrence goes to a (wonderful!) special school. He thrives there and the staff are so creative and dedicated. I hope before too long all our children will be able to return to school safely, once this virus is under control, because for Lawrence, his special school is genuinely one of a kind and we can’t replicate everything they do at home.
Beatrice is in year six at what is her third primary school. It hasn’t been easy to find a school to cater for her as an academically gifted autistic. I home educated her for a year too, when anxiety and sensory overload were at an all-time high, and before she had a diagnosis. This experience is proving invaluable now that we’re all thrown into home educating our kids.
Any tips for managing work and home-schooling?
This is very different from ’normal’ home education, where children typically socialise and go out and about all the time. It’s a common misconception that home educated kids are usually stuck at home alone, they aren’t! So this virus-induced home-schooling that we’re all doing is new territory for everybody.
First off, home-schooling isn’t school, so you can’t expect to replicate what happens in the classroom at home.
My tops tips are:
- Have a plan for each day but keep it fluid. Things will overrun, or your child can’t/doesn’t want to engage. That has to be ok, because otherwise, you’re setting yourself up for a huge amount of stress.
- If you have a call to make, or something to concentrate on, make sure everyone has had some fresh air, is fed and watered. Sit them down with a specific task.
- Also, lower your expectations. Don’t try to pack too much into each day. You’ll run out of steam. Little wins!
Can you give us an insight into your home life, particularly things that have to be different?
There’s never a raised voice. Something that has at times been so hard, because parenting is tiring and frustrating at times, right? But for my daughter, raised voices are devastatingly difficult for her to process. So we simply don’t do it.
Of course, the trouble with that is Lawrence, while not able to speak, is super noisy! So it’s a balancing act of managing and avoiding noise quite a lot of the time.
Lawrence also needs an adult to do absolutely everything for him, from getting him up and dressed to feeding him, keeping him clean, happy and entertained. There isn’t a great deal of time left in the day once all those things are done. And it shows because our house is full of unpainted walls, frayed carpets and piles of paperwork left untended!
Weird things I would never have considered are different in our house too, like we have to have a huge amount of storage space for all of Lawrence’s kit – two wheelchairs, a massive NHS delivery of pads, medicines…
We’re also still watching Mr Potato’s Christmas Show in March, because Lawrence absolutely loves Christmas and just can’t let go!
Now, what about your campaigns. How can people help?
Toilets! I never knew before we had Lawrence that disabled toilets aren’t actually accessible for many people with disabilities. And without toilets, going out becomes really difficult. Lack of properly accessible toilets is probably the single most limiting factor for disabled people being able to access society right now.
What’s needed in every community, town, station, motorway services, public building and attraction is something called a Changing Places toilet. This is a larger accessible toilet that also has a changing bench and a hoist.
Numbers are increasing but the only people campaigning for them are those who have the least time and resources to do so – people with disabilities and their families.
We need society as a whole to get behind this to make it happen. And that means everyone who is involved in their community. People can get involved by sharing information about the need for Changing Places loos, what they are and how to get one installed. And if a new public building is being built or refurbished in your community (think village halls, museums, cinemas, leisure centres), ask where the Changing Places loo will be. If there isn’t one planned, ask why not. Provide information. Question. Support. Because this is how real change happens and you’ll be making society more accessible for everyone. Any of us could need one of these facilities in the future, after all.
How do you protect your own mental health?
I go to bed super early and read whenever I can. I’ve had to compromise having much a social life, because I just can’t do it and stay rested enough to manage. That, and plenty of beach walks! Having a dog has made a real difference, because even when I feel like just vegging out on the sofa, the dog needs walking and it always helps.
In these new strange times, how can we all support each other?
We can all support each other through it no matter how different our lives might be. As a mum with a disabled child, and another who can find going out to busy places totally overwhelming, I’ve found social media totally invaluable in fostering some sort of social network.
It isn’t the same as seeing people face to face, but while we can’t do that right now, we can find a place to connect with each other and keep each other positive even when life seems a bit bleak.
Lastly, I ask everyone this – what’s your favourite Cornish beach?
So hard to pick one! There are many beaches we like to visit as a family that we can get to easily with Lawrence’s beach wheelchair (Polzeath, Mawgan Porth, Porthmeor, Seaton, Polkerris), but for me when I’m on my own with the dog and I want some headspace, I always head to Tregantle. When the tide’s out, and you can walk the full length of Whitsand Bay from Tregantle Fort, the beach feels like it goes on forever. Bliss.