TedX: Down's Syndrome - Beyond the Barrier of Fear

Ted, and the independently run TedX events, are a worldwide series of talks based on 'ideas worth spreading'. You may be a huge fan, or equally may never have heard of them. 

Watch or read the transcript of Hayley's talk below and
explore the list of other recommended talks. Photography @verityWestcott

Just over a year ago I was asked if I would like to do a TedX Talk at the local TedX Truro event. I jumped at the chance with a mix of pride and excitement at first. This was a massive honour, a big challenge, but I hoped I was up to it. I've been a huge fan of this international network of talks for years, often turning to them to lighten mood, become inspired, fuel curiosity or learn more while going about my chores, instead of having the radio bumbling away. I've learnt so much from thewide range of speakers.

Ted says we each have a story inside us and that the world becomes a smaller, kinder place if we listen to one another's tales. Apparently 13-18 minutes is the perfect time slot to inspire  or educate someone who is not an expert in your field.

TedX Truro 2017

Sleep Strategies for Children who have Down's Syndrome

Any sleep-deprived parent will tell you how debilitating that all-consuming exhaustion is. The brain fog, irritability, lack of concentration and a complete obsession with getting a few hours uninterrupted kip under your belt, is a completely natural part of parenting. 

But you expect/hope/pray it will end after a few months.

Sleep hygiene is important for everyone

Up to 25% of all children have a sleep problem at some time (Mindell and Owens, 2003)

But for many parents of children with additional needs this pattern of broken sleep can last for years, or indefinitely. And of course the children themselves are suffering from disturbed sleep too, which has an impact on physical wellbeing and cognition.

Love From Uncle Carl: A niece who has Down syndrome

Uncle Carl holds Natalia at her naming party.

*This post was first published in 2013. Natty is now 14 and the pair are still close.

Well where do I start with this blog post that my sister asked me to write?

It seems hardly possible that the next few paragraphs will summarise 5 years.  The time has passed so quickly but I can still recall some of the early events as if they were yesterday….

The lead up to Natalia’s birth was, I imagine, as typical as any family.  We were all super excited with the prospect of another member joining us and I was excited about becoming an uncle again.  Many trips were made to my sister's house to help out looking after Mia, and we enjoyed planning for the future over many meal times.  

I will start my story from when I first heard the unexpected news...

Bob phoned me on my mobile and I was sitting at my desk at work. It was around 3pm and I remember him saying that Hayley had had the baby, she was a girl.  And in his very typical softly spoken voice, which I can still hear to this day, he said she had Down's Syndrome.  My first reaction was disbelief and I questioned his comment, almost thinking he was joking.  When I look back, I realise how silly this was, but now feel that my reaction was because this sort of thing happens to other people…. (4 years previously a work colleague had a son with Down's and I remember vividly thinking I hope that doesn’t happen to me.  I moved from the company and so did not follow the progress of his son.   My perception has obviously changed since then.)

After putting the phone down from Robert I remember feeling in total shock. I stayed at work for another hour at the most and drove home.  On the way home one of my closest friends called me, as usual for a chat during our commute.   He asked how I was and I attempted to tell him that my sister’s new daughter had been born with Down's Syndrome, but I couldn’t.  I burst into tears and just couldn’t talk.  The feeling was of disappointment I guess, and immense worry for what the future would bring.  This child was not 'healthy', or 'normal', which is what everyone says when a baby is born.  We have a disability in the family.  These were the thoughts running through my mind.  When I think back this was purely because I knew nothing about this condition and so I was speculating…  My friend tried to chat but I ended up pulling over and putting the phone down.  I sat in a layby until I could control my tears and then drove home.

Family Story by Elaine Walsh: Bonding with my Daughter

Please welcome Elaine Walsh and read her beautiful story below, as she tells us about the early days with her daughter Síofra, who has inspired her to help other new parents.

Síofra and her Mum Elaine

When my daughter was born I wondered why I wasn’t feeling that strong bond as we lay beside each other in the hospital.

We received a post-natal diagnosis of Down syndrome when Síofra was born. I wondered if that was why I wasn't connecting with her. I felt really guilty about it.
Myself and my husband had desperately wanted our own child. We went through IVF unsuccessfully. We were thrilled to be pregnant. So I really wondered why I wasn't besotted. I was worried that I wouldn’t be able to see past her diagnosis. I judged myself really harshly for even thinking like that.⠀⠀⠀⠀⠀⠀⠀⠀⠀

I didn’t realise that because I had a cesarean birth I hadn't felt the explosion of Oxytocin, the naturally occurring love hormone, that mothers experience when they give birth vaginally. It creates that bonding feeling.

Three years later, I have come to understand that it was more probable that the lack of Oxytocin in my body and the fact that she had to be lifted from my body was the reason that I struggled to bond with her. And that it had nothing to do with her extra chromosome.⠀⠀⠀⠀⠀⠀⠀⠀⠀

Presenter with Down's Syndrome: George Webster Delights CBeebies Viewers

George Webster show us why we all need to see ourselves represented in the media.

The following article first appeared in iNews

“It’s my friend George! He’s the same as meeee!” my daughter Natty squealed, as we tuned in specially to watch CBeebie’s newest presenter teach us how to blend a smoothie. 

Natty’s college-aged big sister Mia perched between us on the edge of the sofa, each of us grinning with the sort of pride you only feel when a family member appears on your screen.

 

Like any professional kids’ TV show presenter, 20-year-old George has all the right characteristics to get BBC pre-schoolers and those with special needs glued to their screens; effervescence, bubbly charm, a quick wit and a trendy vibe that his viewers aspire to emulate.

Here I Am: Off the Rails Film Premiere

Three years ago my life was derailed by divorce. 

Our little carriage came to a soul-shaking halt. And the shrapnel of broken hearts and bits of family life lay all around. 

And just as my girls and I were gingerly glueing the working parts back together and inching forward, a global pandemic took a sideswipe. It brought fear and isolation in its wake, and stole the hugs of friends' that had quite literally held us together.

Here I Am: Olly Bermejo at the Off The Rails premiere @Getty

Sally's Invitation

So when my dear friend and everyone's favourite actress Sally Phillips asked me to attend the red carpet film premiere of her latest film Off The Rails at the Odeon Luxe in Leicester Square, last week, nothing was holding me back. 

Solidarity in Sport and Why Language Matters

 

I’ve never been an ardent sports fan. 

Well, to be fair sport has never been a huge fan of me. 

It went downhill for me shortly after the twirly fun of Music and Movement sessions to the soundtrack of Bonny M in Miss Muffet’s reception class.

Somewhere along the line, P.E. became less about dancing to Brown Girl in the Ring and more about the utter shame of being lined up in a sports hall, waiting to be picked for a team. The same two ultra-sporty kids were always chosen to be captains. And I was always, and I mean ALWAYS, the last to be chosen from my place in the firing line, usually with an eye roll or a tut. I was the bad apple catcher at the bottom of the bag.

 

Down Syndrome Diary Spreads Love Across the Globe

Seven years ago, new Detroit Mum Jamie Freeman wrote a personal message into a pristine leather-bound diary. Simply wanting to correspond with other parents with a child with Down's syndrome, she had no idea who would read her words about her beautiful son Benny, or the hands that would write within the book as it travelled through 26 families and across four countries and two continents.

She certainly didn't know that she would later publish The Down Syndrome Diary in a beautiful coffee table format for others to read, pulling its stories together closely, just as she would draw the contributors in, becoming an online family.

"Thank you, whoever you are, 

wherever you are, for your words..."

Jamie wrote her story into a beautiful book she would send out into the world. You can read her blog Ben Through it All here. 

9 Tips for Parenting a Child with a Learning Disability

Advice for parents, aimed at nurturing confident, happy children with a learning disability. 

Acceptance

Few of us would say we were prepared for our babies to be born with a Learning Disability and for many there will be a time of readjustment, even mourning for the baby you thought you were expecting. But it’s important to learn to accept your child for who they are and not try to make them someone or something they are not. That leads to frustrated parents and unhappy children. There will be challenges but you will learn and grow together in dealing with them.

I had to give myself a talking to when Natty was tiny as I felt she was turning into a ‘project’, simply the target of lots of SALT and physio activities. Of course, she is our daughter and sister first and foremost. Success at school is not the be all and end all in life and in fact having Natty in our lives has made us re-evaluate our priorities: friendship, food, music, travel, family, enjoying the moment. Time spent at home with a loving family will influence your child the most.

Bumper Down Syndrome Awareness Month Giveaway!

Here at Downs Side Up we are super excited to be able to offer a BUMPER collection of fantastic gifts this October to mark Down Syndrome Awareness Month.

Enter our Rafflecopter competition to be in with a chance to win all these goodies

Tips and Contacts for School Pupils with Down's Syndrome

It's that time of year when many of you are preparing your children for a new term at school.

Tips for school pupils with Down's syndrome

I think back to the time Natty came to the end of her pre-school years and remember the stress and worry, the form filling and meetings, all mixed together with pride that she was making this huge step for the first time. I remember a lot of tears of worry,  late nights of planning and the invaluable support of many professionals. In the current pandemic things are even more fraught with EHCP plans put on hold, social distancing to ensure and the struggle of home education for those of us who feel woefully under-prepared.

Whether your child is starting at mainstream or special school, or starting back after lockdown, you will want to get through this process as smoothly as possible to ensure the right package of support for your child.

So here are a few tips and ideas that worked for me, as well as some invaluable support groups that you can consult for advice tailored to your child's needs, whatever their stage of schooling.

Down's Syndrome: Sally smacks medics between the eyes with screening truths

Sally Phillips addresses 4000 at the Royal College of Gynaecologists World Congress 2019

Sally Phillips is one incredible woman who has endured more than her fair share of front row hecklers, not just as a comedy actor, but also when she created the brave and thought-provoking BBC Documentary A World Without Down's with film maker Clare Elizabeth Richards. It got everyone talking about the thorny topic of screening. And more crucially the even pricklier topic of 'screening out' babies with Down's syndrome.

"The right words at the right time 

to the right people"

3 years on and Sally's film afforded her the opportunity to speak to 4000 obstetricians and gynaeclogists from all across the globe. I am proud to be able to share the transcript below. 

Specsavers KidsFit Disney range suitable for children with Down's syndrome #ad

Specsavers ambassador Natty loves her new KidsFit Disney glasses!

Goodie box from Specsavers

When Specsavers asked if I'd like to work with them* to spread the word to Downs Side Up readers about a new range of Disney KidsFit glasses made especially for children with small faces and low nose bridges such as many children with Down's syndrome, I jumped at the chance. 

I've always been a fan of our local Specsavers. Mia and I have have been regulars for years. But Natty has only just made the transition from specialist hospital eye appointments to mainstream opticians' eye tests and prescriptions and so is a fairly new customer.

Natty entertains with her famous eyebrow wiggle: 

From the outset Natty has been treated like a celebrity when she goes into the store, partly because she schmoozes, flatters and entertains the staff, and partly because last year she and her big sister Mia were awarded British Citizen Youth Award medals at the Palace of Westminster for their work towards education and inclusion. 
Low and behold the event was sponsored by Specsavers!

Mia and Natty receive their BCyA medals from Ashley Banjo

It was a day which I will never forget, one that made me immensely proud of both girls for all their achievements, but I think for them the fact that Ashley Banjo of Diversity fame, was presenting the awards and that the event involved mountains of cake and a tour of London in an open top red bus was the most important matter in hand.

Back to the Glasses! 

I was really delighted to learn that Specsavers have developed a range of glasses ideal for youngsters with Down's syndrome. The low set bridge on the glasses means that children are encouraged to look through the lens rather than peering over it. 

So often tailor-made ranges for our children can prove expensive or difficult to obtain, and with this KidsFit range available free with your child's NHS optical voucher it could represent a significant saving of time and money.

As you can see Natty was delighted to give the samples a try as soon as they arrived, even before I could take the stickers off the lenses! 

Natty models the new Specsavers KidsFit range #loveglasses

Then we popped in to have an eye test and choose 2 pairs for Natty. The whole team were very patient with her and made the eye test fun. Specsavers staff have a good understanding of visual acuity and specific eye conditions that children with Down's syndrome can experience, as well as putting an emphasis on ensuring that children's glasses are fashionable, practical and fit well.

Thumbs up for eye tests!

It's important for all children to have regular eye tests, not just to make sure that they have glasses fitted if necessary in order to see better for day to day tasks and school work, but also in order to pick up on any underlying medical conditions. 

Time to choose 

Natty's prescription is very mild and she often chooses not to wear her glasses, but they do help make her less tired when she's at school. And I secretly think they make her feel more studious and focussed!

Quite frankly she loved all of the vibrant and colourful glasses in the range, which make fun styles more accessible. She loved the Disney characters on the arms (and I liked that they were subtle enough to be stylish). 

Natty took choosing her glasses very seriously

And entertain the Specsavers staff

Not one to ever knowingly under-entertain a captive audience, Natty used the glasses as props for a full show of singing and dancing. After a few renditions of The Greatest Showman, she chose a pink Sleeping Beauty pair and a blue Cinderella pair, one for "bed time reading and the other for my school bag" she exclaimed. 

In her new specs, Natty sings This Is Me! #loveglasses

Designed to fit so they don't fall off #Kidsfit

Once they'd been ordered, we popped back in a week later to have them professionally fitted and checked. Then Natty was ready for action!

We'd love to thank Specsavers for catering for our children's needs so well, and hope that they extend the range in the future, perhaps designing age-appropriate and stylish glasses for older children, teens and adults next.

Susbstantial and stylish. Natty loves her KidsFit cinderella glasses.

The new glasses are certainly substantial enough to withstand Natty's rough and tumble lifestyle... I just wonder how long they will survive her Womble tendency to hide precious objects in strange places!


To find out more or view the full collection go to the Specsavers website here. 

* #AD We were sent vouchers for 2 pairs of glasses for Natty as well as a lovely Disney goodie bag and I was compensated for my time to write this review. 

Flemish Painting Features Angel with Down's Syndrome

The Adoration of the Christ Child

This oil on wood painting shows a classic nativity scene, and the little angels kneeling at the front on the left clearly has Down's syndrome. Some think the shepherd at the back on the left also has an additional chromosome.

At the time when the work was created it was common for the faces of those who had commissioned the art to feature within it. Perhaps we are looking at the face of the much-loved daughter of a wealthy and proud 16th Century Flemish family here. 

The 1515 Flemish painting, by an unknown artist, depicts an angel (next to Mary) and possibly the shepherd in the centre of the background, with Down's syndrome.

It's wonderful, and it shows that Trisomy 21 has been around for a very long time. The Flemish artist is unknown, but was a follower of Jan Joest of Kalker. The painting resides at the New York Metropolitan Museum of Art. 

Lip Warrior: A no-nonsense healing balm for cracked lips

Lip Warrior to the rescue for dry lips

Sore, chapped lips cause misery for many

This is the very first Winter of Natty's life during which I feel adequately armed to deal with her persistent dry, sore lips. It might sound like a minor irritation to many, but for those of us with loved ones whose lip area dries and cracks to the point where it bleeds, we understand the suffering that this condition can bring. 

And if this applies to you or your child, you'll know the cost and time involved in trying out every lip product on the market. Our bathroom shelf could double as a lip balm shop!

Many people struggle to manage chapped lips; those with eczema or psoriasis, those with additional needs who may favour mouth-breathing and be prone to chelitis, those who work outside in the elements and even people on certain medications or with other underlying medical conditions. 

And did you know that some perfumed or medicated remedies can even make the problem worse!

Necessity is the Mother of invention

I became so desperate to ease Natty's discomfort last Winter, that I asked a friend who creates natural products for skin conditions to put on her thinking cap and help me create a pleasantly fragranced, protective and healing balm. One that was free from nasties and one that Natty wouldn't simply rub or lick off after application. This salve had to have staying power.

Almost a year later, and lots and lots of trial and error (balms that were too thin, too thick, that curdled, ingredients that couldn't be ingested, those that heal too fast or are allergens and even a batch that smelt like a damp dog - YUK!), we have lovingly crafted something Natty is eager to use, and more importantly that works wonders. 

We've called it Lip Warrior and we are delighted to be able to offer it for sale here in our Etsy shop for £6.99! 

Used liberally in combination with some simple Lip Warrior tips for dry lips this all natural, un-lickable salve smells divine, protects and heals thanks to its base of lanolin!* 

All natural Lip Warrior contains protective lanolin and vitamin E

So, without further ado, my friend Sarah the Freelance Naturopath and I are really excited to announce (drum roll please...) the launch of Lip Warrior! 

We really hope it helps heal your hellish lips as well. 

Update: Since launching the feedback has been incredible. Folk are using the balm for peeling cuticles, chapped cheeks, dry heels and even to help lipstick stay put. Lips everywhere are loving Lip Warrior too!

ON SALE FOR £6.99

Lip Warrior's Top Tips for Sore Lips

• Avoid salty and citrus foods
• Keep hydrated by drinking plenty of fluids
• Cover your mouth with a scarf when out in the cold
• Don't rub or pick your lips
• Avoid any cosmetics, certain toothpastes or scented lip balms that irritate your skin (but do brush your teeth well and keep your mouth clean!)
• Chat to your doctor as cracked lips can be a sign of an underlying medical condition or that you might need to change your medication
• Carry your lip warrior everywhere and use it often! 

* 15ml Lip Warrior contains anhydrous lanolin (not suitable for those with a wool allergy), alkanet, calendula oil, pure grade vitamin E, vegetable glycerin and honey. Not suitable for vegans. Created lovingly in fresh batches in a kitchen that may contain all 14 allergens. Lip Warrior comes with the HerbMark quality of assurance. 

How to Make a Visual Timetable

Mornings were very fraught in our house until I made this visual timetable!

A visual timetable might help your child with the morning routine

Not a morning person myself I would often get impatient with Natty, trying to coax her into getting dressed and having her teeth done, which often resulted in an exasperated meltdown (sometimes from her, sometimes from me, sometimes from both of us!) 

I would despair at Mia who favoured playing the piano or drawing a Stegasaurus instead of brushing her hair or putting her shoes on.

Visual timetables are well-known for being useful for visual learners, and those with short term memory processing issues, as children with Down's syndrome or Autism. Your school should be using one with your child already.

But here's the secret...they work wonders for the whole family! How much easier to point to a chart, rather than think of what your children should be doing and ask them/ help them to do it. It provides a focus for the whole family and brings in an element of play to tricky activities.

So for us, the school mornings became less of a magical mystery tour, and much more manageable. They really helped when preparing Natty for transitions into school too. 

There are many ways to make a visual timetable, even software that will do it for you. Here's how I made ours.

You will need

Photographs or drawings of the activities you want to concentrate on. (I printed mine free online)

Scissors

Laminating sheets, adhesive book film or stiff card

A sticky-backed roll of Velcro

A small cloth bag or box

Instructions

1) Select pictures for the key activities. These could be general stages in the morning routine, after school activities that take place over the week or tiny steps in one process such as using the toilet.

2) Cut the pictures to size then have them laminated if possible as they will last a lot longer that way, or glue onto stiff card.

3) Round the corners of each card.

4) Attach pieces of velcro to the back of each card.

5) Decide where you want your visual timetable to be located. Ours is in the bathroom but others find the kitchen, or near the front door helps.

6) When using the visual timetable, as each step is achieved successfully, the child pulls it down and places it in a small bag that you could hang nearby. This means that they automatically see which stage comes next, but putting the card away serves as a reward.

(Oh, by the way, the wash and brush your teeth cards are currently wedged behind the radiator, so nothing is perfect!)

"I'm off to make one for the days of the week, showing a different activity to distinguish each day..."

Siblings, Screening and the Sillier Side of Life: Sally Phillips and Hayley Goleniowska Chat About Down's Syndrome to Challenging Behaviours Podcast

Check us out! At the glowing age of *ahem* the latter part of our 40s, my friend Sally Phillips and I are dipping our toes into the podcast pond! First Sally learnt about 'gaming' wearing 'on fleak' fingerless gloves and a beanie hat, and then we were guests on the cutting edge Challenging Behaviours Podcast! 

Sally Phillips and Hayley Goleniowska chat about siblings, screening
and the sillier side of life with Down's syndrome to the CB Podcast team

I think we are officially 'down with the squad' or whatever the current vernacular is.

In all seriousness though, Challenging Behaviours Podcast is a cutting edge talk show taking the discussion around learning disability and disability into new territory. The programme is run by pioneers Jack, Adam and Tom who bring an ecclectic wealth of knowledge and experience to the mic.

Book Giveaway: A Major Adjustment

Just over 11 years ago I read a book that changed my life. You could win a copy and it might just change yours too (entry details at the bottom of the page). 

Win a copy of A Major Adjustment by Andy Merriman