It's a Blogger's Life: Pause for Thought

Sarah Pylas who wrote Grenglish

A Blogger's Legacy

This week saw the passing of a supremely talented writer and much-adored and respected member of the blog community, Sarah Pylas. She was one of The Originals, a well-established influencer when I started out over a decade ago. 

Sarah's blog was called Grenglish, a beautifully honest account of life married to a Greek man, her husband Pan. Sarah's devotion to Pan and their son Zachy radiated from her work. I urge you to go and have a little read in her honour. 

Sarah joked that behind every Greek man there was a woman rolling her eyes... but the love between them was tangible. Sarah died surrounded by friends and family and was brave and hilarious to the end, Pan told her online family.

And that is what the blog world is, a family. And what an amazing legacy Sarah has left behind, not just the way she touched her fellow writers who she supported and showcased selflessly, but a warm and honest piece of work, a deep insight into her mind. Sarah left us young, but boy, did she packed a lot of life into her years! 

Sarah and others from the blog world at MADs Blog Awards

My Blog Journey

I paused for thought to reminisce about my own blog Downs Side Up, the way it started, how it evolved and the way blogging as an industry and form of writing has changed over the years and what a close-knit online community we are. We really are the privileged few and Sarah played a large part of that.

I recently had the pleasure of talking alongside Steph Curtis of Steph's Two Girls on this subject at BlogOn. The sacrifices had our families made, what had our words achieved and the friendships and lessons had we gained along the way? Because over a decade ago we were writing into unchartered territory. No-one had put their family stories out into the public sphere in quite such a way before and we inevitably made mistakes as we found our way, from oversharing to dealing with trolls.

Downs Side Up and Stephs Two Girls
discuss blogging tips at BlogOn

Blog/Family Life Balance

For me, the original motivation for my blog was to buy other new parents precious time bonding with their baby, by dispelling the myths and fear that surrounded the diagnosis of Down's syndrome for me when Natty was born. I wrote what I had needed to read in those early days, but soon found the unexpected benefit that the process of blogging was cathartic and allowed me to access support as well. 

My blog was organic, there was no plan, it just evolved and I wrote in a homely way about what was topical or going on in our lives at that time. But it did take over. It did eat into family time on occasion, despite always trying to strike a balance between creating change and 'putting ourselves out there.' 

And now, post-divorce, I am reworking my blog in order to monetise it without losing its message or my integrity, as that is the perfect work from-home-solution in a post-pandemic world. So now, more than ever as a single Mum, I need to ring fence my time with my girls, and organise my ways of working like never before. 


#AD This is where employee Apps such as Blink, as used by the NHS, can help streamline your workload, aid communication between colleagues and store vital resources all in one easy-to-access platform. 

The Highlights

So, the heady days of parent blogging may be over, where our self-hosted websites were newsworthy and our words won awards. We've all moved on and our words are being crafted elsewhere. Our cute toddlers are now teens who don't want to be photographed posing with gifted products or have their private lives discussed with the world. And that's as it should be. My blog is a more generic place now, filled with facts and resources rather than family anecdotes.

Blogs today may well be slick and professional, but it is important to look back on what we have achieved with our homespun websites. Here are just a few of the things Downs Side Up has enabled me to do alongside my fellow parent bloggers:

Model Natty meets Lorraine

  • Encouraging advertisers to use a diverse range of models.
  • Giving our opinions in the mainstream media.
  • Campaigning for a more inclusive society, for equitable healthcare and education.
  • Advising publishers on how they represent disability.
  • Publishing books and resources.
  • Giving TedX talks.
  • Having tea with the Queen.
  • Being awarded British Citizen Youth Awards for work towards a more inclusive society.
  • Raising huge amounts of money for charity.
  • Supporting other parents in the same boat and changing the narrative around disability.
  • Advising at parliamentary level. 
  • Delivering training to medics and teachers.
  • Writing for magazines, newspapers and other online platforms.

Oh, the places your blog will go!

Quality over Quantity

I know our friend Sarah always got this blog/life balance right, dipping occasionally into her blog more as a way of chatting authentically with others and having a break from her offline job than anything else, but always writing words of great wisdom when she did. 

And I thank her for being in our lives and always being so supportive of others' work. She truly was one of the few who helped give so many of us a leg up. Thank you Sarah. 

Preparing for Tonsillectomy the Fun Way

D Day. 

Or should I say T Day. 

Natty is having her tonsils +/- her adenoids removed.

Bye bye tonsils

Yes, I know it's routine, and my head also knows thousands of children have it done each year. I had it mine out when I was 4. My mum wasn't allowed to stay with me. I do remember a lot of ice-cream though, and my Grandma buying me a new red overnight case.

Powerful Words: How to Be a Captivating Public Speaker

A Captivating Public Speaker

A good speaker, be it at a conference, after dinner at an awards ceremony, or via a traditional platform like TedX, holds a lot of power in their hands. 

The right words, delivered well, have the ability to move us to tears, shake us with laughter or make us stop in our tracks and think deeply about an area of life that we have never before contemplated. Words quite literally shape our thinking and can stay with us long after the talk is over. 

Empathetic, relatable and passionate after dinner speakers* will make you feel as if you are walking their path alongside them. They will make you see life from a different perspective. And when a warm and honest orator takes to the stage, you will not hear a single pin drop. There will be no need to hush the audience, for they will be utterly captivated.

Whilst we can all hone our speaking skills and improve how we deliver our message with practice, I do believe that the desire to want to get up and overshare our personal stories in front of strangers is probably due to some innate personality trait. But the ability to do that in a way that audiences want to keep hearing is truly an honour and a blessing. 

Sally Phillips is a brilliant after dinner speaker

Our 5 Safe Post-Covid Travel Plans

#AD The moment we were told that Natalia has Down's syndrome has been well documented on this blog, but one of the very first muddled thoughts that I remember running through my head was that we would never go to the beach again. 

Natty and her sister are beach babes

The Beach is our Playground

We live in Cornwall, the beach is our doorstep playground, so this was a nonsense of course. I can't tell you what my confused reasoning was, but what surprises me is that so many other parents of children with SEND say exactly the same.

Not only have we come on a long personal journey since those early difficult days, but I am proud to say that Natty and her sister did indeed become little globetrotters. As soon as she had recovered from heart surgery, a trip abroad was a symbol for our new found freedom from worry.

With acceptance, love, a little forward planning and carefully chosen destinations, we have been able to create happy family memories and make international friends wherever we go.

George: I am no Poster Boy

Meet George: I Am No Poster Boy

George's Mum Tatty created a Facebook page
called I Am No Poster Boy

Down's Syndrome Diversity

I have always believed in respecting and celebrating the diversity that exists within the Down's syndrome community and I try to show this through a wide range of personal stories on the Downs Side Up Family Stories page. 

Families differ in the range of approaches to life they have, the early interventions they implement, what and how they advocate for their loved ones and even whether they believe an apostrophe or person first language is important or not. The Down's Syndrome Association supports everyone who has Down's syndrome.

Made Possible: Stories of Success
by People with Learning Disabilities in Their Own Words

But it is even more important to recognise and showcase the kaleidoscope of people with Down's syndrome with their infinite combinations of taste, personality, race, culture, sexuality, strengths and needs. There is no such thing as a cookie cutter template for Trisomy 21, and each and every individual has worth and a contribution to make to their family.

Making Chromosomes Count recently ran an article on this important subject in its magazine. 

And social affairs journalist Saba Salman says in her brilliant book Made Possible: Stories of Success, a collection of tales by people with a learning disability, there are many types of success and they come in many forms.

A Mother's Words

So, when George's Mum Tatty got in touch with me to ask if I could help get her son's story our there, I leapt at the chance. Her words and photos lifted my soul, such was the joy flowing from them. Joy, and its twin; love.

George loving life at the beach

Supporting Your Child with SEN When You are Moving House or Renovating a Property

*This post contains a paid link

Moving house is one of the most stressful events you can experience in life, or so they say. 

Having moved three times in three years, whilst simultaneously going through a difficult divorce AND trying to main stability for Mia and Natty, I'd have to say I agree. 

Moving house and living in an older property that needs work can take its toll on young people with special needs too. Their routine can be upset, they are not the focus of your energies and can feel destabilised without their familiar surroundings. Then there are their physical and medical needs to consider as well as doing any DIY safely. 

But while moving has been exhausting, emotional and at times stressful for us, the girls and I have become closer as a result, and we've picked up some really useful hacks along the way. 

Top Tips for Supporting your Child with SEN When You Are Moving House or Renovating a Property

The girls and I immediately fell in love with our 60s bungalow even though it needs a bit of a makeover. I'll just say that Googling ways to remove woodchip wall paper have featured heavily in my life this year, and Mia has started a Bungalow Renovation Project mood board on Pinterest.

A replacement bi folding door that Natty can open easily is on my wish list

  • First things first You will want to choose the location of your new home with your family's needs in mind. Look for the locality of a suitable school, particularly if your child is in specialist education. You'll also need to look at nearby medical support and the proximity of other amenities such as transport links, accessible parks or support groups. 
  • Similarly, you will want to make sure your home can accommodate your child's requirements. If your child has a physical disability, you'll be looking at accessible access, room for equipment and so on. Children with sensory issues might prefer a quiet location, and for me safety was paramount. Natty is unaware of danger and so being away from a main road in a property with secure front door and a fenced-in garden were key. 
  • Prepare your child for the move by talking about what to expect. Show them the new house and perhaps make a scrap book of photos. You could create a social story or read a book such as Usborne's Moving Day. 
  • Allow your child to pack their own box of precious things that they want to have on the first night in the new home. It might include their favourite toys or a photograph.
  • Removal Day You might decide that moving house is best done while your child is at school or with a carer. But, if appropriate, older kids and teens might like to be involved. Helping out on removal day can help the move seem more real.
  • Say goodbye to the old house. We stood in each room and remembered one happy thing that had happened there before we said farewell and hoped the new family would be happy there. 
  • Make the day as fun as possible even if you are stressed. Children pick up on our emotions and this will set the tone for how well you all settle in your new home. Perhaps a friend or cousin might like to come over to help. Natty was so excited when her beloved Uncle Carl arrived to help us move and the whole day involved impromptu wheelbarrow rides! 
  • It sounds obvious, but make sure that bedding, favourite snacks, a kettle and tea bags and any medication or equipment your child needs travel with you. Have an essential box to hand as well, containing a few tools, light bulbs for quick fixes on arrival. 

Support you child with a book about moving house

  • Settling in I quickly noticed that our house had condensation and mould on some of the windows. Damp and mildew isn't good for anyone, particularly a child with compromised immunity and a history of respiratory infections. So I decided to replace some of the blown panes with cheap windows*, as well as looking at installing a dehumidifying system. 
  • Making sure you are going to live in a safe and healthy environment is vital. It's worth paying a professional to check/install smoke and heat alarms immediately, as well as certifying electrics and gas boilers, fires and so on.
  • I always sort out the girls' rooms first. A deep clean, a lick of paint and a few twinkle lights, go a long way to helping them feel settled. Using familiar rugs, duvet covers and putting up their art work will make everything feel homely quickly. I try to keep removal boxes in their bedrooms to a minimum so that they have a little calm haven to retreat to when the unpacking gets too much. Let youngster make choices about the layout and colour scheme of their rooms if you can.
  • Take your time before embarking on bigger, more expensive projects. We love our 60s bungalow which has some quaint original features. I'm doing a lot of the basic DIY projects myself, like stripping wood chip wallpaper and painting the walls and skirtings. But after living here for a year, Mia, Natty and I have decided which bigger jobs are essential.
  • Live in your for new home a while rather before you decide what needs doing. Some things you'll learn to live with and some things you will soon realise you can't stand. We have an original sliding patio door that is impossibly heavy for Natty to open by herself. I struggle too, so a replacement bi folding door is on our wish list.
  • Easier said than done, but try to keep chaos, mess and dust to a minimum. Crucially paint or other chemical fumes are dangerous, so keep windows open and do this kind of work when youngsters are at school. Similarly keep dangerous tools locked away and out of sight.
  • In moderation, every family member can have small achievable and safe chores to do in your new home. Being given jobs to do boosts young people's self-esteem and confidence. And we all want to be part of the removal and renovation A team after all, don't we 😊

Maths Resources for Children with Special Needs

How do you teach numeracy to children 

with special needs? 

Maybe you home educate, or you are home schooling due to Covid, or perhaps you are looking for some fun activities to supplement the work your child is doing in class. 

try to build maths into our everyday lives, to make it fun and relevant for life. Natty is a kinesthetic learner, so I am always looking for innovative ways, such as music, song and movement to increase her confidence with numbers. But it's easy to get stuck in a rut when you plan numeracy activities with your child. I know I certainly do. 

Build literacy and numeracy into your everyday activities
for your child with special needs

So I asked you, our lovely Downs Side Up readers for your suggestions for this crowd-sourced post. And what a resourceful and imaginative lot you are! 

Check out the top tried and tested maths suggestions below. 

Educational Toys

A teaching clock is a great investment

I always look for sturdy, bright and colourful resources, so when t
he wonderful people at Jaques London sent Natty a beautiful wooden teaching clock recently, we couldn't wait to give it a try. I love number kits that can be used in various ways, and this clock doubles as a shape sorter as well. Each shape is a different colour and fits into a slot on the clock face which also features animals and the foods they eat painted inside, providing lots of opportunity for vocabulary development too.

The shapes also thread on to a sturdy string, a bonus fine motor skills activity too! 
Natty loves this teaching clock for telling the time practice, as the hand are easy to move and I love the retro, sustainable packaging it arrived in.