Hayley Goleniowska is Mum, blogger, speaker, writer and advocate for those with Down’s syndrome. She aims to gently change perceptions of the condition from within hearts through her inspirational blog.
As well as editing the Britmums Special Needs round-up and writing a regular column for Special Needs Jungle, she can often be found giving interviews on TV and radio.
Her youngest daughter Natalia was among the UK’s first clothing models with Down’s syndrome and is a media queen and ambassador in her own right.
Describe a typical day for you?
Stumble through the shower, breakfast, school run portion of the day sipping coffee while I go. I am not a morning person, rather a night owl. Usually a few errands and then home to pop dinner in the slow cooker, chuck in some laundry and tidy round. Then by 10 I begin work. I’ve decided to treat Downs Side Up as work, to give it the attention it needs, but also to stop it taking over my life completely.I answer emails, usually including a couple from parents, anything from having just heard a diagnosis to wanting idea for teaching a child with DS about a life skill. Then the social media stuff, Twitter, FB and the rest, before settling down to some writing.
My blog gets less and less attention and more of the writing is now for medical journals, guest posts for charities and my columns with Britmums and Special Needs Jungle. Often there are interviews with magazines or a paper wants a quote about a new antenatal screening test. I try to do these if I can squeeze them in.
The rest of the time is taken up writing letters, networking, trying to create tangible change. Once in a while I’m asked to give an opinion on a TV programme (BBC Sunday Morning Live) or Radio show (Radio 4 Woman’s Hour). This then means a day of research, and preparing what to say. It usually involves an adrenaline surge too, so I have a day off after something like that.
If I’m away giving a talk to nurses, doctors or teachers then my husband takes over at home. He works from home and is luckily very flexible in his hours.
After the school run, its tea and chat and homework together in our kitchen, the hub of our home. When the girls are in bed, after a story, I might have a bath and then start writing again, catch up on my blog reading or sit and watch a comedy with Bob if I need a night off. I don’t watch much TV unless it’s something specific of interest.
What do you feel are your biggest achievements?
I usually feel frustration at the changes yet to be made, at how far we still have to go before we remove the fear of Down’s syndrome, before we reach full inclusion.
I guess steps have been made though. Natty was the UK’s first clothing model with Down’s syndrome and part of the #adinclusion campaign. We have opened the doors for many other children since (although it’s still slow going).
Being part of the parliamentary voice to try to increase support for women during the antenatal screening process and bring about change to outdated laws re disability abortion. It’s a subject I am passionate about.
Being invited to No.10 to meet Samantha Cameron as a thank you for services to those with learning disabilities is something I will never forget.
And reading my blog at Britmums was probably the point when I realised that my writing had the ability to move people, to make a difference.
…So many of the comments I receive are personal and private, but I guess getting an email from a Mum who is continuing with a pregnancy after reading the blog, or one who found DSU whilst still on a maternity ward and who writes to thank me for throwing her a lifeline, well that’s what it’s all about isn’t it.
What’s in your handbag/satchel etc?
Haha! A mess!
I have a beautiful Escada bag that I treated myself to and in it are crayons, straws, a notepad for ideas, my phone, a huge purse stuffed with receipts and stamps, children’s drawings, a tube of Doublebase, wet wipes, a lego brick and a nice Dior lipstick!
What are your ambitions in life?
To bring my girls up to be happy and fulfilled, to see more of the world, to leave my mark, to be part of a team of people who will change the way we all view Down’s syndrome and disability.
What advice would you give your pre-baby self that you now know having had a child?
Always expect the unexpected and learn to bend like a reed in the wind. Be easy on yourself. Nurture yourself. Know that it isn’t a failing to ask for help.
Where do you see yourself in five years time?
A more focused writer, hopefully with a book or two behind me.
What advice would you give a budding blogger?
Set your limits, don’t let it take over your life, keep an eye on your goals, find your unique voice or selling point and stick to it. Don’t get sucked into comparing yourself to others and worrying about the stats.
Finally, happiness is…
Sitting on a beach with my family, watch my girls laugh and play, happily. We live in Cornwall so this happens more often than you might think. The icing on the cake is to be on a warm beach with a margarita in my hand though!
I do love playing with my hens and doing the school run in my wellies too!
Photograph ©Hayley Goleniowska.