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

SEND in the Experts Podcast: Downs Side Up interviewed

Georgina Durrant interviews me for her Twinkl SEND in the Experts podcast

Powerful Podcast

It was a huge privilege to be interviewed recently for the cutting edge Twinkl SEND in the Experts podcast, hosted by author, teacher and The SEN Resources Blog host Georgina Durrant. 

You can listen here as we chat about Natty's journey through education, debate mainstream and specialist school placements, discuss what inclusion really means, unpick what constitutes equitable education and healthcare and signpost best practice for educators and medics alike.

"A lot of parents have fought very hard for our children to have access to mainstream school over the years. And I think there is an unspoken... perhaps... feeling that we are letting the side down if we put our children in specialist setting. It's such a personal decision and it is whatever is in the child's best interest"

 

Downs Side Up chat to Twinkl about life with Down's syndrome

Twinkl Magazine

You can read our interview with Lucy Carmen for Twinkl magazine on World Down Syndrome Day here. I talk about what Natty has taught me over the years and how I have reassessed how I define success. 

You can buy Georgina's book 100 Ways Your Child Can Learn Through Play here.

Life with Special Needs: A Bedroom Fit for a Teen

We've moved house recently and Natty had some very strong ideas about her bedroom decor - one cherry pink wall it is then! 

Moving house can be fun!

It never will be a perfect Insta-ready room I can tell you. Her habit of hiding small objects in purses which then get hoarded in multiple handbags will ensure of that...

But just as every teen has their own ideas about decor, and their room layout will be determined by their physical and cognitive needs as well as being led by the space you have available, there are a few tips and tricks you can use to make their lives easier and more comfortable.

Natty's room is quite cosy to say the least and that has meant I've needed to be creative in order to help her organise herself. So here are a few hacks I've learnt along the way.

Label Items

We have an labelled underwear drawer, a sock drawer and a pyjama drawer. These can have small stickers with an easy read font and/or symbol, or you can laminate card and blu tac it on. It's also a great idea to label objects such as the door and window depending on your teen's needs. 

Baskets Work

Natty and her sister Mia have multiple baskets which are stored inn and on top of the wardrobe. Each one contains everything needed for a particular activity, say dance or gym class. Another contains sun hats, glasses and sun screen and yet another all the swim kit. This make getting ready to go out much easier. 

Make Clever Use of Space

You can use the space under ottoman beds or in the drawers of divan beds to store items that aren't wanted on a daily basis and keep them tidily out of sight.

If storage isn't a problem, then another option is a truckle bed, which has a second mattress tucked underneath for when friends come for sleepovers. This was a great investment for Natty's room, and gives us a spare bed whenever her best friend or cousin come to stay.

Inexpensive shelving can house books, games and puzzles and again these can be labelled. We picked up some lovely units from a charity shop, which I up-cycled with some funky paint. 

Desk Area

If your teen has homework to do, they might need a desk with a reading lamp. This can double up for doing art, puzzles or as a dressing table for getting ready. 

Create a Visual Timetable

A visual timetable can feature the morning or bedtime routine broken down into achievable steps, or show the weekly timetable of activities that your teen enjoys. Visual timetables help foster independence and life skills and can even set out the steps for chores such as changing bedding. 

Get the Height Right

Coat hooks can be great for hanging uniform or an outfit ready for the next day as this provides a visual cue for what's happening. But it's no good having a hook on the back of your door at full height if you are petite in stature. So look at your teen's room through their eyes when planning and if they are small, fix shelves and hooks within their reach.

Let Them Choose

Provide options for your teen to choose from so that they can personalise their space and have ownership of the project. Simple cosy touches such as new cushions, a duvet set, rug, lamp shade or poster can really personalise a space.

Showcase Their Collections

Perhaps your teen has a collection of trains or dinosaurs or books, or as in Natty's case, tiaras. They might not be your idea of ornaments but they are precious to them. So display them on a shelf or desktop display unit. Items such as drawings, certificates or old records can be popped into cheap frames and hung on the walls.  

Family Tree

Family photos can be slotted into over door hanging pouches or displayed in frames. This is a way for your teen to cherish special memories or milestones in their lives. 

Get Sensory

Your child might like their room to be quiet, in which case you can use soft furnishings or pin fabric to the ceiling to muffle sound. Equally they might enjoy a sound system on which to blare out Little Mix on a loop. 

Mix and colours textures together to provide sensory interest. Pick different fabrics, faux furs and fluffy throws. 

You can bring aromatherapy into the room safely with a natural essential oil diffuser or by planting aromatic herbs in pots. 

Your teen might find a weighted blanket helps to calm them and aid sleep. They might also enjoy a memory foam pillow for support and some youngsters like a couple of extra pillows packed around them for comfort.

Make your teens bedroom a calm place to unwind

Sleep Hygiene

If your teen has trouble sleeping, it's a good idea to keep their bedroom a calm place. Eliminating tablets and phones before bed, lets them relax and helps their brain switch off for a good night. Read our Sleep Strategies post here. 

So, each room will be as individual as our teens themselves, and they are going to want to spend a lot of time in them, so why not make them as comfortable and functional as possible. 

* This post includes collaborative links.

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. 

I 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 the 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.

Foxes Academy and Hotel: Fostering friendships and life skills

Foxes Hotel

Minehead, Somerset, England

8 out of10Telegraph expert rating

As lockdown eases and life opens up safely, I am delighting in watching my two fully vaccinated teens enjoy a little more freedom.

The friendships they missed so sorely are back on track, and with them a boost in confidence. For Natty this means an increase in social skills and independence too. She also has a new PA, someone young and full of energy to hang out with at the weekend. Because what 15 year old wants to spend all their free time with their parents...

Special Needs Jungle recently highlighted that youngsters with a learning disability so often lack a circle of friends, which is something many of us take for granted, but also something we can help set up and foster within and outside of school.

 

Friends, fun, socials skills and risk taking are all an
 important part of developing self esteem

Add in fewer opportunities to make choices about free time, what to wear or eat, or even the chance to take calculated risks and make the inevitable adolescent mistakes, and we find that we caring, worrying parents might be clipping our beloved youngsters' wings.

I'm also pondering the next steps in their journey as they move towards university and college.

So, when Mia, Natty and I visited the famed Foxes Aurora Hospitality and Catering College and Hotel in Minehead a few years ago, it was the close friendships between students that I observed first and foremost. The clear respect between staff and students was also strong, as was the clever way in which every student was supported to be as independent as possible.

Natty pictured with the team of trainee chefs at Foxes Hotel which she reviewed

And then there is staying in the Hotel as a member of the public, being catered for by the team of staff who all have a learning disability. It's a wonderfully unique experience indeed, that left us feeling more like guests of friends than paying customers.

You can read our Telegraph Travel review here for more information, and details to book yourself a little mini break.

"A homely seaside hotel, particularly welcoming of guests with intellectual and physical disabilities. 

It is the UK’s only training hotel for young people with learning disabilities. 

The staff and inclusive ethos of this hotel make it truly special: individual differences are not only accommodated, but celebrated here."

But for now, I'm left hoping that Foxes will one day in the not too distant future become a home from home where Natty forms a close friendship group, learns how to land her dream job of being a waitress and experiences what it is to be as safely independent as possible with a secure and professional safety net around her that isn't always me... her mother.

Twinkl Membership Giveaway and New Symbols App

Win 6 months Twinkl Ultimate Membership

Here at Downs Side Up we love to bring you news of innovative ways to help your child develop and communicate more easily. 

From Makaton signs to Singing Hands DVDs, reading schemes or specialised Apps, gadgets and gizmos. If they have worked for us, we like to spread the word.

We also love to offer you a freebie, especially if it's an educational freebie. So enter our competition at the bottom of this post to win 6 months Ultimate Membership with the resources experts Twinkl. This fantastic prize is worth £50.

Twinkl have launched a new Symbols App

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.

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..."

A Makaton Nativity Play that Includes all Children

Mum of Jacob and Primary School teacher Rebecca Thompson created this wonderful new Christmas resource a couple of years ago that would benefit all early years settings or SEN classrooms. It comes complete with Makaton symbols. 

This Season she launches a sequel, Gold Star Inn.

New Makaton nativity play

When my son, Jacob was about 14 months old our speech and language therapist recommended we started to use Makaton to help him to communicate.  Desperate to do anything that would help his development my husband and I enrolled on a two-day training course and our signing journey began.

Summer Holiday Solutions for SEN Families

For most of us that blank sheet of school Summer break time leads to a mixture of relief that our children are ours exclusively for the next few weeks, excitement at all the memory-making to be done, and not a little anxiety as to how we are going to fill each day, survive the meltdowns or find enough energy, patience and/or affordable childcare.  

I certainly don't have all the answers, but here are a few ideas you might like to try.

Summer holiday solutions for SEN families

Working with Medical Students for Change: Viewing Down's Syndrome as an Identity not a Diagnosis

The Vital Early Days

The overriding motivation for starting this blog was a feeling that I wish I could turn back the clock and re-live the first hours and days of our youngest daughter's life. 

Medical students learn that Down's syndrome is more of an identity than a diagnosis

I would love to have had the knowledge I have now, an understanding of what Down's syndrome means and how our lives would take shape.

I wish that the fear of Down's syndrome hadn't been built into an almost insurmountable hurdle by the outdated misconceptions of society and the negative language used by some medical professionals and text books. 

An Unlikely Duo: Sally Phillips and I Take to the Stage

Phillips and Goleniowska is never going to trip off the tongue, and indeed our pairing was less about the giggles and more about the opening of eyes and the changing of hearts and minds, but last week we took to the stage together. 

Sally Phillips and I share our stories with healthcare professionals

In fact the tears in the audience's eyes stemmed from raw emotion rather than belly laughs, although with Sally Phillips being an accomplished comedy actor her honest story and true emotion was balanced perfectly with quick-witted moments of hilarity at the event organised by Daniel Marsden and the Kent, Surrey and Sussex Learning Disability Community of Practice.

Moments of hilarity with actor Sally Phillips at LDCoP16

"Parenting a child with Down's syndrome is more like a sitcom than a tragedy." Sally Phillips

What Are You Doing for World Down Syndrome Day?

Subtitle: A Less Less Nakedness and a Little More Education

World Down Syndrome Day 2016

My laundry basket plays host to at least 20 solitary socks in a variety of patterns and colours. They've been living in this medley of footwear without their partners since this time last year, or maybe the year before that.  

Occasionally I tip them all out onto the work top in a vain attempt to find their long lost friends, but still they prefer to live in a happy jumble of brightly-coloured difference.

You see World Down Syndrome Day is marked by folk wearing #lotsofsocks, as I have always said 'For we are all colourful and different.'

It's an eye-catching idea, but this year I won't be shouting about mismatched socks. It's not that I disapprove if you do, I might wear a couple of my faves from the melée and the children will do the same. It's just that my sock basket has made me grumpy of late.

Neither will I be taking my clothes off in a classy re-make of calendar girls again. Yep, one WDSD I bared almost all (apart from the aforementioned socks) egged on by Kate from Striking Mum and her Naked Mums series, to raise money for the Down's Syndrome Association and to celebrate our Mummy bodies... 

...I think the total reached around £3575, but possibly that was to get me to put my clothes back on!

Two years ago the #TeamT21 bloggers pulled together and spread the word about donating via a text message. Somehow this went viral  with nothing more than a hashtag and some determined champions to fuel it, and we raised around £10,000 in 24 hours. 

I will never forget the excitement, standing in my kitchen too excited to sit, or even go to the loo, tweeting all day for all I was worth and watching the number rise and rise. That can never be topped. 

But no, this year I have decided that I cannot take the excitement. The adrenaline-fuelled frenzy. Perhaps it's because we are a year further along our journey, perhaps I've got it out of my system, perhaps I have a little nagging feeling that WDSD is more about celebration and education than fund-raising, perhaps I've just reached a certain age and stage.

So, I will leave the parachute jumps and the baths of beans to the younger advocates with more energy.
I will cheer from the sidelines and focus on sharing vital information and stories of celebration. We'll change our avatars and watch building light up in blue and yellow. We'll feel part of a global community holding hands around the world.
  

Buy I Love You Natty for World Down Syndrome Day

One small token I decided on is to give the profits of all copies of our book I Love You Natty sold this month to the Down's Syndrome Association who support people with Down's syndrome throughout their lives.  I've also decided to slash the cost of the book for March to make it as affordable as possible. We're throwing in a free Downs Side Up magnet from Camaloon too!

Click to buy now!

You don't have to buy a book to help spread the word though, just join our Thunderclap here to shout to your followers. And if you're new to Thunderclaps it's worth taking a peek to see how they can help your campaign.

We're also very excited to have been part of making a small film with the Down's Syndomre Association as part of #MyFriendsMyCommunity. 

More about that when it's unveiled. It'll be worth the wait I can assure you *smily face*

Using Special iApps to Toilet Train Without Going Potty

A few months ago I had the pleasure of meeting inspirational duo Bev and Colin Dean. 

Special iApps are a fun, visual way to learn

These committed parents have developed a comprehensive and inexpensive set of Apps for children with additional needs. Their son has Down's syndrome and they created Special iApps to help with his communication needs. 

The apps can be used to help children at various levels of literacy, beginning with picture matching, working with words and then sentence level stories.

Here, one Mum describes the Special iApps role in helping her daughter potty train:

Sick with Nerves

This week I am catching a plane to fly North of the border. I hate flying. 

I'm going to a large and beautiful city.
But I'm a country bumpkin who will find this daunting.

I'm taking Natty with me.
Now there we have added a whole new list of dimensions to consider, not least the extra on-board bag of entertainment and spare clothes. 
*rushes off to pack the spare clothes in the on-board bag, just in case of travel sickness*

Natty trains student midwives and nurses

I've been asked to be a keynote speaker at the NHS Education Scotland student nurse and midwife conference or #NESLDAN16

This is where we can create real change and work with medical professionals to ensure equal care and support for all. It is a huge honour and I am determined to get it right.

But 2 BBC crews are coming to film my talk. The talk I haven't quite finished writing.  I'll be interviewed by a famous comedian who has a son with Down's syndrome.

How did life become this surreal?

As if things weren't scary enough, now I feel the pressure to really get this right. I'm aware that what I say could be cut down to one phrase, so every phrase must count.

Transition into School: Small Steps for Little Ones with SEN

I am very proud to have been able to share Natty's transition into school story with the Department of Health this week as part of the #BestStart0to19 campaign.

Blog

Viv Bennett

Organisations:	Public Health England

Transition into School: Small Steps for Little Ones with SEN - Hayley Goleniowska

Viv Bennett, 1 October 2015 — 0-5 transfer to LAs, Getting it Right for Children and Young People, School Nursing

She headed straight for the dinosaur-infested sand pit, holding her PA’s hand and smiling from ear to ear, not stopping once to admire her low-level coat peg, complete with laminated fairy picture and nickname ‘Natty’ in easy read font.

Neither did she turn around to see my face crumple into tears as I signed “proud” in Makaton.

We Need to See Disability in Advertising

'It's meeee!' she squealed excitedly as we drove round the roundabout.

We manoeuvred round one more time so that she could get a closer look at the huge banner outside our local supermarket urging us to get organised for the new school term. This time we all squealed. 'It's yoooou!'

A third lap. Just for luck. Just to be sure our eyes could be believed, smiles stretched across every face in the car.

I fell silent as I fought back a tear or two, my heart swollen with pride as I allowed the true significance of what I had just seen to sink in. This was so much more than a Mum seeing her child's face on banners outside every Sainsbury's in the land. For Natty has Down's syndrome and this is the first time that a child with any kind of disability, physical or intellectual has featured in a major Back to School advertising campaign. For me the posters might as well have shouted:

• All children have a right to quality education and the skills to enable them to lead full independent lives. 

• All children have their own unique personalities and our classrooms benefit from that eclectic mix. 

• All children, regardless of their abilities or disabilities, love a shiny new school uniform!

Proud Mummy Moment

I will try not to brag but....
(we are really very proud and need to celebrate.)

Natty came rushing home clutching 2 precious sheets of paper yesterday.
On one she had written the entire alphabet, independently, for the very first time:

On the other she had written random numbers up to 15 on the whiteboard as the teacher had asked her to:

Now every child develops at their own pace and has strengths and weaknesses in different areas. Natty just happens to love writing, tracing and copying, so we harnessed this. That said, this process has taken all school year to master, using Jolly Phonics actions to start with, then Ruth Miskin picture flash cards to visualise each letter with a writing action and lots of sensory activities, drawing in the air and on backs too.

Read our Tips for Writing here for more information on seating, pencils and activities to try.