Mother’s Day is coming up for us in the UK (March 26th if you’re not sure/a man!) Motherhood can be tough, but I’m not one for all the ‘poor me’ that I see from a lot of parents with disabled children; no, motherhood may not have turned out quite the way I’d imagined before having kids, but it’s my child who struggles with the world around her and it’s my job to help her navigate her way through life. End of. I often hear “I don’t know how you do it,” or “special children are only born to special parents,” which is crap. I do it because I love my children and, like I already said, it’s my job and if special children are only born to special parents, why are there so many in the care system. Anyway, I digress…
Whether your child has additional needs or not, the work of a mother is hard. We take on so many varied roles and for little reward, other than the satisfaction that our children are healthy and happy, loved and love us back. If we’re lucky!
So, in celebration of mothers everywhere, I have linked up with other bloggers from the SEND world and am sharing a motherhood-focused interview with Vaila from Our Inclusive Home. Here, Vaila talks about motherhood, blogging and the SEND issues that interest her. Happy Mother’s Day!
Hi, I’m Vaila. I live near Cambridge with my husband, our 6 year old daughter (EJ), 3 year old son (EW) and our 2 rescue whippets.
What piece of advice would you give to another Mum in the same circumstances as you?
We are in the slightly unusual position of having only just receiving a probable genetic diagnosis for our daughter’s significant developmental disability a few months ago, after her 6th birthday! I say unusual, but really it’s really just a perception is that it’s unusual not to have a diagnosis, in actual fact 6000 children a year are born with no diagnosis for a significant period of time (or indeed ever)!
The best thing we did was to find other people who ‘got it’. They may not have understood exactly, as EJ’s condition by its elusiveness is rare, but joining SWAN UK (Syndromes Without A Name) opened up a whole community to us.
So whether your child has a known diagnosis, a rare one or is undiagnosed, reaching out and communicating with people who ‘get you’ really does help to empower you all. From advice on specific equipment, to expectations of the support available, to a listening ear, it all helps you stop feeling alone.
What’s the best piece of advice another Mum has given you?
Try not to let external factors grind you down. There is a lot of advocating (fighting!) to do, but don’t let that take over. Live in the now, because (whether your child has fragile health or not) none of us know how long we have, so we must try to live and love!
Of course I’m not always able to take this advice, and often find myself anxious and overwhelmed, but it is very good advice!
What one thing did your mum always used to say to you which you have found yourself repeating since becoming a Mum?
Not word for word, but my mum taught me about equality and fairness. A socialist and a feminist, my mum brought me up to believe in humans, that we more alike than different, that we should look after one another.
That and, as eggs are good for you, and there are eggs in cake and pancakes, it follows that cakes and pancakes also must be good for you!
Who would play you in a movie of your life?
A friend recently said Sofie Grabol (you know, Sara Lund with the jumper out of The Killing) reminded them of me. I’ll take that… I do like a good jumper!… but without the murder thanks!
And if we are going with the Scandinavian thing, I’ll have Viggo Mortensen play my husband… cool?
What are your plans for Mother’s Day this year?
My favourite thing is a family walk and to stop off for a nice lunch (probably not a picnic as I don’t want to have to be organised on Mothers Day!)! National Trust is our favourite (safe I guess) option, in that our local site, Anglesey Abbey, has a brilliant natural play area in which EJ can interact in her own way, while her brother can climb around (and tire himself out!), then it has a fab café in a new (accessible!) building where we always need to stop for a lunch or afternoon snack.
If you could go back to the beginning, what would you tell yourself as a new Mum or as a Mum of a newly diagnosed child?
Trust your instincts. Don’t doubt yourself. Don’t assume that you’re just being a neurotic new mum. If something doesn’t seem right, speak to the doctors and try to be confident in what you know. Of course they’ve seen lots of new babies, but they may not have seen one quite like your baby! Work with them, you may not be a medic but you are the expert in your child!
What is the biggest battle you’ve faced as a Mum?
I’ve never really had particular stand out head to head battle, but negotiating the whole ‘system’ is often like wading through treacle…. in a maze! I’ve lost count of the times I’ve wondered if I’ve slipped into a Franz Kafka novel or into some kind of parallel universe.
If you were PM for the day what would you change to make life easier for Mums of disabled children?
I think Mum on a Mission might be able to guess my answer to this one!
It would be to ensure the built environment is properly accessible! Starting with amending legislation for accessible toilets to include Changing Places Toilets in buildings (with clearly defined criteria so there’s no wiggling out of responsibility by big businesses!) and to push accessibility up the order of importance in home design (so that homes are flexible for the future of the people living there, but also so that disabled or elderly friends and family can actually visit!)!
What’s the best thing about being a Mum?
Love. I love my little people more than I could have ever imagined before I had them. That and an excuse to make fairy cakes regularly, you know, because they are good for you! J
Funniest moment as a mum?
I can’t think of a specific instance but we laugh a lot. EJ is a very giggly girl! In fact, I was delighted to find that one of the behavioral traits listed for people with the same gene change as EJ, is a happy demeanor, lots of laughing and big smiles! This is definitely true of EJ and she makes us see the joy in the fundamental things – like the sound of leaves rustling in the trees or the feel of rain on your face!
Who are your favourite Mum bloggers?
There are just too many to name so I’d like to give a shout out to my SWAN blogger friends who (among other things) write about life with a child with an undiagnosed or rare conditions. Scroll down to the bottom section of this page on the SWAN UK website to check them out!
What is your life motto?
I have anxiety disorder and OCD so this is more of an instruction (that I often ignore!) than it is a motto, but it’s definitely the most common phrase that runs through my head!
Finally, if you won the lottery today, what’s the first think you would buy?
I would love to build a beautiful accessible family home like The Ramp House that Chambers McMillan Architects build for their own family! Maybe two! One in ‘back home’ on the west coast of Scotland and one down here near Cambridge, near EJs amazing school!
If you’d like to read more from Vaila, or get in touch via social media, here are her details!..
Blog: The Inclusive Home
Facebook: The Inclusive Home
Instagram: The Inclusive Home
Pinterest: The Inclusive Home