Little Miss Independent Demonstrates her Life Skills

Natty has always been a feisty independent little soul. 

From persevering until she could feed herself with a spoon, ignoring the fact that she was covered in carrot purée, to dressing herself in a colourful array of inventive costumes that Vivienne Westwood would be proud of, to insisting on climbing up to reach her favourite bowl BY HERSELF! even though you have offered to pass it to her. 

Yep, just call her Little Miss Independent.

Little Miss Independent demonstrates her life skills

Now sometimes letting your child with Down's syndrome do things by themselves takes a lot longer. You're in hurry for the doctor's appointment and you really need to get in the car. Now.

You feel your frustration mount. But the only way any of us learn is by doing things for ourselves and building on the mistakes that inevitably occur. And at these moments I always remind myself that I don't want Natty to learn to expect others to do things for her, to become reliant on them more than is essential. So I bite my tongue and try to avoid the words, "hurry up" for then all is lost. 

So this week, when we came in from school I asked her to get changed into her relaxing clothes and put her painty school cardigan in the laundry basket according to our little routine. I took this moment to nip to 'the smallest room of the house' and on my return heard the washing machine splish-sploshing and turning its load.

But hang on, I hadn't put any laundry on that day. 

"Natty, what's in the washing machine?"

"My cardigan."

I paused for thought, to make sure I reacted in the right way.

"Show me what you did."

"I put the cardigan in. I twist this (turned knob to 40oC quick wash), and I press S-T-A-R-T." She spelled out the word as I do each time I set the mechanical workhorse going.

I hoped my surprise wasn't showing on my face. I have showed her this many times as I chat through what I am doing, and she had remembered exactly. I felt enormously proud of her.

"Did you put washing powder in?"

"Yes. Here." she declared pointing to the soap tray.

I opened the soap tray and asked her which part she had put the soap in.
Her little fingers pointed to the section for main wash, not the pre-wash or conditioner. 

"Good work, littlest of smalls," I thought.

Eager not to look shocked, because, well, why should it be a surprise that Natty can complete such a task successfully and by using her own initiative? I gave her a big hug and thanked her for helping me. 

"Mummy is so very proud of you Natty."

"I'm proud of you too Mummy." 

I didn't have the heart to tell her that perhaps it was not incredibly eco-friendly to only put one item in the machine at a time. I'll work on that next time, perhaps when she gives Daddy Downs Side Up a lesson in the workings of The Cardigan Cleaner...

One Sister's Gift of Words: Scope Review I Love You Natty

Thank you to SCOPE for their support in producing our book I Love You Natty and for this article today. 

The original can be found on their site and I have to admit I had a few tears reading it back in the kitchen this morning. 

Real life stories

I love you Natty – a sister’s gift of words

26 November 2014 emmasterland Leave a comment

Hayley Goleniowska, founder of Downssideup tells how a loving note from one sister to another sowed the seed of a book about hope, love, facts, family and inclusion. 

Nearly eight years ago, I sat alone at my desk on a cold December evening. Flames danced in the fireplace as my heart felt heavy with uncertainty, shock, fear and worry.

As I typed the words ‘Down’s syndrome’ into my computer, I hoped to find a way of explaining to the two-year-old who was sleeping upstairs, why her new baby sister was not yet able to come home from hospital. I needed a way to make her understand why Mummy and Daddy were so worried. I needed a vehicle to start a discussion about why we are all different and how we all need extra support sometimes.

And, deep down, I too was looking for something positive and visual that would reassure me, would show me how our family life might shape up in the unknown years that lay ahead of us.

Outdated, depressing images jumped off my screen, but I shut them out and gravitated towards the most positive looking books I could find. I ordered them all. Some  were outdated or contained incorrect information, and none seemed to contain the facts, written in plain English for children, with colourful photos. And oh, it was the photos I wanted to gaze at for hours, for they portrayed truly what was possible for our youngest daughter, with support.

As the years passed and our family found its way on a new path, the thought of that book we had searched for stuck in my head. I wasn’t sure how to approach creating it and I had absolutely no experience of publishing, so the seed of an idea was left to gently germinate.

A loving note

Mia and Natty holding I Love You Natty book

When my eldest daughter Mia was around six or seven years old, she was a very prolific note-writer. She would leave drawings and notes for us all around the house. One day I found a beautiful note for Natty, saying just how precious she was to Mia, and how her life wouldn’t be the same without her in it. It brought a lump to my throat and was a lightbulb moment for me. I realised here was the basis for the book. Mia’s words would form it’s core.

It took around two more years to complete the work. I asked Mia questions and her answers covered descriptions of Down’s syndrome, support services, heart surgery and even the annoying things all siblings do. We then chose family photos to accompany the words.

But what now? We almost had a book, I ran it through a Photobox website and it came back looking very sweet. Very plain and small but it was the first time I saw that we might actually have created what so many others might find useful. I sent digital copies to the main UK charities, asking for their advice and thoughts. They all loved it and agreed to be listed in the back cover.

I approached a couple of publishers, but our little book was too niche.I looked at printing on demand options, where one book is printed each time a customer buys it. That seemed like the way forward. Now we just had to get the document in the right format.

A friend and former colleague, Sarah, offered to help. The weeks passed and I thought we were close to our goal. I felt the nerves rise at the thought of sending such a personal work into the big wide world. One evening she arrived at my house with some large card tucked under her arm. It was the proof of the book, and what I saw brought me to tears.

Book cover of I Love You Natty

My friend Sarah had taken Mia’s book and painstakingly added in not only our photos but Mia’s drawings and beautiful designs too. The whole book looked nothing like the pale little initial idea I had had printed. It was a work of art, a book that children and babies of all ages were going to adore looking at, along with their parents too.

Of course now the thing was too elaborate to fit a Print on Demand standard template. And to print such a colourful book on demand would hike the price per unit to well over £10, nearer £12 and I was adamant that it should be as affordable as possible to all families. £5.99 was a limit I wasn’t willing to go above.

There was only one thing for it. We were going to have to bite the bullet and self publish! A local printer was found, ISBN numbers and copy write purchased and we were off. It all took around a year to do, but finally, in May this year, around 1,200 books arrived at our home. We were to ship them from our front room each time someone ordered one via Amazon.

We were astonished at the response, humbled. The feedback from parents and charities has been incredible. The books have been shipped to all corners of the globe and are now available from Waterstones online as well as Sainsbury’s in Cornwall.

Mia has been featured on TV and radio and in magazines and journals across the UK, and I Love You Natty: A Sibling’s Introduction to Down’s Syndrome is adored by children, teachers, parents, lecturers and medical professionals everywhere. It’s a book of hope, love, facts, family and inclusion.

We have covered our initial costs and have been able to donate over 100 copies and we are now saving up for a second print run. It’s been hard work, but worth the risk, sweat and tears. And I hope we have created something that will make a real difference. Thank you all for advising on, supporting, buying, reviewing and recommending I Love You Natty.

To order a copy of I Love you Natty visit Amazon.

Anti-bullying Week: Fighting the Statistics with Love

Last week was anti-bullying week 

#antibullyingweek

Mia joins in Lindsy Atkins' @liliesarelike anti-bullying week campaign
with a hand-crafted poster

Have you ever been bullied? 

I have.

Apart from the online trolls that cross my path every once in a while, I remember a more traditional bout of bullying only too well, even though it happened around 40 years ago. 

Counting Fun with Five Little Speckled Frogs

Natty has been working on adding and subtracting numbers at school recently and we've been finding fun ways of looking at this maths concept with her. 

Counting Fun with Five Little Speckled Blogs

She came up with her own counting system using some driftwood and 5 playdoh frogs. But she couldn't quite get through the video without disolving into infectious giggles.

Kinesthetic Learner

SEN pupils, as all children, benefit from looking at things from different angles, and incorporating various skills together to embed new ideas. We all learn through song and action, the kinaesthetic approach, much more readily (I bet you can still remember songs from your primary school days as if it were yesterday).

We were walking along one of our local beaches recently when Natty found a fabulous little stump of driftwood. She bent down to pick it up, and holding it aloft she exclaimed, "Look! The Five Little Speckled Frogs' log!"

Maths in Art

It was indeed and we promised to hurry home, wash it and create 5 little frogs to sit atop. Big sister Mia helped her whilst singing the counting song as they went about their work. Natty chose the colours of Playdoh she wanted to use and set about making the little round amphibians all by herself. I love when art and numeracy and music come together in this way!

She was very proud of her efforts and took the log to school to do a Show and Tell with her froggy numeracy props. She also enjoyed singing for her captive audience at home, her family. Here she is about 3 minutes before she fell asleep that evening, determined to finish the song despite yawns, uncontrollable giggles and being too tired to know the difference between a frog, a grub and a glub!

Five Little Speckled Frogs

I guarantee it will make you giggle. Ladies and gentlemen, Natty brings you Five Little Speckled Frogs Sat on a Speckled Log...

If you enjoyed this post you might also like the video we made when Natty insisted it was her birthday (even though it wasn't). Yes it was. Yes, it really was.

#TeamT21 November Linky

Thank you all for joining in the monthly #TeamT21 blog linky and for taking part in the Facebook page of the same name.

 We are a team to be proud of indeed!

<div align="center">
<a href="http://www.downssideup.com" title="Downs Side Up"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjax3iHsx6pWvQ67hGe3QaCoyjwoqtfbeFdPH-Z01FOFX0Mh0Vt7DBegFXgDcszxn1EfrV547HffZ8-sjAefs1m36AMAFh96NuW1SHgcT4N-NwdU3E386t5iXbI4NnMnXKBap0YXunZoU_e/s1600/TeamT21.jpg" alt="Downs Side Up" style="border:none;" /></a></div>

Grab your blog badge code above to show you are a part of this amazing group. 
#TeamT21 was coined by Tom Bachofner at The Futures Rosie and the 
Facebook page is run by Alice Hassell from My Son My Life My Way.

What an amazing mix of blogs by people with Down's syndrome, parents, teachers and siblings we have seen added to the list and what a treat it is to sit down with a cuppa and spend time visiting and reading around these wonderful sites. Testimony to the power of our words indeed!
My latest favourite discovery is Beth Blogs! by Ginger Warrior's niece. Beth is a teen with DS and blogs about her fabulous life, this time her dedication to dance.

With Love to our NHS Learning Disability Nurses: #PHPCYPweek

Head of Public Health Nursing, Viv Bennett has asked me to write a piece for the NHS to raise the profile of a range of children's health issues. The aim of this Population Health Practice for Children and Young People #PHPCYPweek is to celebrate good practice, motivate and enthuse professionals.

Natty celebrates #PHPCYPweek

Natty had keyhole heart surgery when she was two years old, and more recently underwent a tonsillectomy. The medical angels who have helped us along our journey will forever be in our debt, but it is the role of the little known Learning Disability Nurses that I have chosen to focus on for this piece.

Nativity 3 in November: A Review by Natty

I know I know...
IT'S TOO EARLY!

It's only November and Nativity 3 is in a cinema near you.

I love to keep the magical excitement of Christmas at bay until the end of December. I think it's a throwback to the time I spent living in France. I love real decorations and simple gifts, good food and family games.

Somehow I think that starting Christmas in August (yep, I'm sure I spied a display in a garden centre as long ago as that, Baa Humbug!) just leads to wrung out children, overspent parents and a diluting of the whole meaning of that festive time of year.

That said, we have Natty in our family 

Natty at Nativity 3 in November!

Pudsey cakes for Children in Need and some Quality Sibling Time

Do you sometimes feel that your child with a learning disability takes more of your attention?
Do you try to factor in activities exclusively for their siblings?
Does this leave you feeling guilty at times?

Research shows that even half an hour spent together where they are the sole focus of your attention reaps enormous benefits for siblings of children with a disability.

Last night while Natty was having a story read to her by Daddy Downs Side Up, Mia and I baked up a batch of Children in Need cakes for a charity cake sale at school today. We had fun looking on Pinterest for ideas and creating little paw prints, spotty dotties and Pudsey bear faces with butter cream, icing and food colouring.

The stains might take all week to scrub off our fingers, but we had a giggle together. We chatted uninterrupted while we worked. And the results weren't too bad either!

Pudsey Children in Need cakes by Mia and Mummy

Inspiring, Inclusive Blogfest

"Why am I doing this?" I thought to myself as I stood cold and alone on an empty station platform in the pitch 6.30am darkness waiting for my train to take me forward 4 hours to Blogfest.

I reminded myself that today was going to be a day of learning, my brain primed like a sponge to absorb writing tips from the finest in the game.  It was also about sharing some thoughts on inclusion and diversity in blogging at a round table at the Mumsnet Blogfest event in London.

Hayley, Soraya and Swazi discuss inclusion at the Blogfest round table.

"The next train to arrive at platform two is the 6.47 to Plymouth."

I felt uneasy, vulnerable, watching out for any sign of railway staff. A shiver of cold ran down my spine, made worse by my damp hair and the urgent need for the first hot drink of the day. 
I sheltered on the bridge, watching the heavy rain fall in vertical cords and flowing like urgent waterfalls from blocked gutters.

A Blogfest for Inclusion

I'm honoured to have been asked to join a group of leading writers and speakers at Mumsnet's #Blogfest2015, a huge one day event that promises to be a 'glittering celebration of great writing and sharp ideas'.

I've watched the You Tube clips from last year and they aren't exaggerating!

I'll be joining Swazi Rodgers of Chocolate is Not the Only Fruit and Soraya Cotwal of I Happy Now 2 talk at a round table about creating diversity and inclusion in the predominantly white, middle class, non-disabled world corner of the internet that is the blog world. Blogging holds such power to create change when we work together, that it's important to harness that for all.

Happy Birthday, Unbirthday and a Blogiversary

November is a month of birthdays, blogiversaries and unbirthdays, in our house. 

They are markers in time, vantage points from which to assess our challenges and achievements over the previous 12 months.

Happy Birthday, Unbirthday and Blogiversary 

I was pondering my own forthcoming special day, when I came across a beautiful poem by John Lavan called An Age over on his blog Poems from Reality.