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

Learning Disability Ambassador Lloyd Page Reviews I Love You Natty Book

Our dear friend Lloyd Page wrote this glowing review of our book I Love You Natty which first appeared on Independent Consultant Nurse Steve Hardy's blog here. Steve supported Lloyd to write this fabulous piece.

Lloyd Page and his copy of our book I love You Natty

Lloyd works for Mencap, write books, trains medics, tell lots of jokes and has a learning disability. He is one of a handful of people who checked in on us daily during lockdown to see how we were doing. 

Despite being hospitalised with Covid-19 himself, Lloyd is always thinking of others. This is what he thinks of our book:

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. 

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.

Make Life more Accessible with Fenetic Wellbeing Mobility Products #AD

When researching mobility products online as part of my research for updating an accessible travel piece, I came across Fenetic Wellbeing.  

Mobility products themselves aren't that exciting, let's be honest. I can't make you giggle with an anecdote about a reclining chair. (but please do send yours in if you have one!) 

Super Gifts for the Senses

You'd be surprised how often people ask for my advice about what kind of present they should buy for a child with special needs. 

Birthdays and Christmas only come around but once a year and other milestone events happen once in a lifetime, so it's important to make your gift one that will light up a child with additional needs' eyes and be used frequently, whilst aiding their development in a fun and gentle way. 

Find a present that will delight, educate and develop the senses

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..."

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

Supporting the Physical Needs of People with Learning Disabilities: Working with Families

A handbook for professionals, support staff and families

by Steve Hardy, Eddie Chaplin and Peter Woodward

Chapter 17: Working Together with Families (reproduced below with permission from Pavilion Publishing)

by Hayley Goleniowska

Book: Supporting the Physical Needs of People with Learning Disabilities

I am very proud to be able to present a chapter I wrote for the above book for medical professionals about the role of families in ensuring quality healthcare for patients with a learning disability. 

All in the Same Boat - Not Heading to Holland

This week saw the launch of my new regular column over on the Firefly Community, an amazing hub for parents and professionals who work with children with special needs and disabilities. 

Do stop by and join in the conversation, or check out their amazing mobility products. 

It's a community that is very varied, and it got me thinking about what it is to be a SEND parent, if indeed there is such a thing. 

All in the same boat - not heading to Holland 

We are all so different, as are our children, but yet we share common threads. And then I got to thinking about Welcome to Holland and what it means to me.

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:

Caroline Playle Reviews Resource for New Parents: Down's Syndrome

Review of Talking About Downs Syndrome Cards

2015 / Lisa Warner 

I’m excited to share this lovely review with you all of Hayley Goleniowska’s Talking About Down’s Syndrome Conversations for New Parents by Caroline Playle.

Caroline Playle is a Mum to three children. One of whom has Down’s Syndrome. When Seb was born she was shocked to be told he had Down’s syndrome. She knew nothing about the condition, aside from outdated assumptions and stereotypes, and was full of unnecessary fear of what the future had in store for her family.

The reality could not be further from that vision. Caroline and her family lead a typical life together, facing the same joys, wonders, challenges and experiences as any family. Caroline started sharing snapshot’s of their lives together to show that Seb is a typical six year old who attends mainstream school, loves reading, football, chips and ice-cream and hates having his hair washed. Caroline shares that her son is a reflection of his family and upbringing, he is not a list of characteristics in a textbook and he is more like their family than anyone else with an extra chromosome 21 . 

What I love instantly about these new Fink Cards is their simplicity. The bold, confident colours and clear font makes them very approachable.

When I was told my baby had Downs Syndrome I threw myself into researching the condition. It was utterly overwhelming, so much information to take in at the same time as becoming a new parent. These Fink cards are absolutely perfect, they are beautifully concise and the card format means they can be taken in small chunks and you choose when and what feelings you wish to explore as and when you feel ready to take on more information. Plus we all know that talking helps with coming to terms with an out of the blue diagnosis. These cards encourage talking in a really gentle way. I can imagine these being so useful at support groups of parents with new babies, getting to know one another and sharing their experiences.

Best of all these cards are about YOU, YOUR baby and YOUR feelings. They are not telling you what will or will not happen, they are not filling your thoughts with all sorts of scenarios that may never come to fruition and they are not limiting your child or your child’s ability. This for me is the genius part of the idea. These cards allow you to explore your thoughts whilst keeping the focus on you and your child and not anyone else with Down’s syndrome.

My biggest regret when I was told my son had an extra chromosome 21was wrongly seeing him as “Down’s syndrome” instead of seeing him as my son. These cards will go a long way to allowing parents to take on board how they are feeling and where they are heading without the unnecessary fear and pressure of a stereotypical idea of what they might otherwise have thought lay ahead. I have no doubt this resource will go a long way to making sure new parents facing a diagnosis don’t miss out on precious, early moment by fearing an outdated or unknown future.

A really fantastic resource for any new parents faced with a recent diagnosis, their families, and medical and health professionals. I have even found them useful in exploring my own feelings, 7 years down the line!

For more information about Caroline please visit her Blog or find her on Twitter and Facebook.

You can order sets of the conversation cards direct from Fink, priced £14.99.

Resource for New Parents: Talking About Down's Syndrome

Fink Cards Enable Attitudinal Change and Positive Practices - Jim Blair Consultant Nurse reviews.

Talking About Down’s Syndrome – Conversations for New Parents 

By Hayley Goleniowska (2015)

published by Fink Cards ISBN 978-1-909002-29-6 price £18.99  Order directly from fink cards or call 01872 211782. Also available from Amazon.

Reviewed By Jim Blair, Consultant Nurse Intellectual (Learning) Disabilities at Great Ormond Street Hospital, Associate Professor Intellectual (Learning) Disabilities at Kingston and St.George’s Universities & Health Advisor British Institute of Learning Disabilities

‘Congratulations on the birth of your new baby.’ 

is the emphatic welcome message from Hayley to other parents of newly diagnosed babies with Down’s syndrome. Sadly all too often these are not the words that health professionals utter when giving news to parents that their child has Down’s syndrome. The reality is it is only an extra chromosome, so keep calm and carry on, yet society still conjures up images, visions and a future of little or no hope, worth or purpose for those individuals with Down’s syndrome. How very wrong that is.

Twinkl, you little star! Free Learning Resources

I use a variety of learning resources when helping Natty with homework, when we used to hem school and when simply helping her learn about the world around her. 

Natty, like many children with Down's syndrome is a visual and a kinesthetic (actions) learner, so colourful and interesting visual resources that capture her interest are key.

One of my favourite sites is Twinkl.
If you are a teacher you will already be using their 93,000 lovely and unique teaching resources' daily, but you might not be familiar with them as a parent.