Makaton Charity Advent Angels

Makaton is a kind of communication life line for many children. For those with little or delayed speech, it really does ease the frustration they feel. 

But not only that it actually helps the brain to form the connections needed to embed language. The more we sign and sign and say a word, the more likely it is to stick.

Mia uses Makaton to sign to Natty: Flower

When Natty was tiny I wondered if using sign was the right thing to do. I've heard parents say, 'but I want him to learn to speak...' and I wondered if signing and speech was an either/or dilemma. You can read Do We Really Need Makaton on the subject here. 

I know many parents worry, but rest assured Makaton will only enhance your child's communications skills. Natty naturally dropped each sign once she could say the word, and now she uses it when signing across a room or when really very excited. 

The girls were very excited to have been asked to join in with the free online Makaton advent calendar again this year. So, back in November we dragged the tinsel out of the loft and dusted off our angel wings to make this short film:

You can watch the rest of the advent video clips over on the Makaton Charity website here, including those made by schools, families and the inimitable Singing Hands. 

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!

10 Top Speech Therapy Tips for Children with Down Syndrome

The following list of SALT ideas for young children with Down syndrome might help you and your child develop their oral motor skills.

A few of the speech therapy tools for children with Down syndrome

Every child is a unique individual.  Each one develops at their own pace, responds well to their favourite toys and has their own strengths and areas that need support. This is no less true for children with Down's Syndrome, so trust your instincts.

Sign Rudolph the Red Nosed Reindeer with us!

Come on, join in the fun. 

Get your antlers on and sign with us to Rudolph the Red Nosed Reindeer!

(Filmed as part of the daily Makaton Charity online advent calendar. 

Thank you to Singing Hands for the backing track.)

Rudolph the Red nosed Reindeer

How to make the Role of Mary your own: Natty's nativity special

Natty played Mary in the wonderfully inclusive school nativity and church Christmas services this year. This is a post that needs few words, for the pictures tell Natty's touching yet hilarious version of the nativity story by themselves...

Mary was serene...

Reader's Story by a teaching assistant

We are featuring a reader's story every day between the middle of Feb and the end of March to celebrate World Down's Syndrome Day 13. We've had so many wonderful celebratory stories and today's is no different.
Sent in by a teaching assistant, bursting with pride and enthusiasm about the benefits of Makaton.
Here is her story about the moment she first saw that signing pay off:

Hi, I met you and Natty a month or two back. 

I thought I would share with you my short story. 

I work in a nursery where a child with Down's Syndrome started, we all learnt some Makaton signing but mainly signed when we sang.

However, one day I was outside with a few children reading some books, then out came our little one with DS. They stood there watching and I started to sign a few words and their face lit up as if to say 'someone else is in my world'.

I can still picture and feel the goosey bumps two years on and still have a lovely relationship with them.

I thought you may like to hear about it as this moment then sparked a whole University essay on Down's Syndrome. 

Anonymous xxx

Downs Side Up Uncovered: First Photo

Hayley signs "LOVE" in Makaton

It's the beginning of March, the month that sees World Down Syndrome Awareness Day and I've decided to share the first of my naked photos, by Photography by Maryna.

Some of you will have followed the progress of the nerves, the shoot, the reasons why, but essentially @Kateonthinice persuaded me to get involved in her one naked mum a month idea, to celebrate our mummy bodies, with all their foibles and squidgy bits.

I think as a mum of a child with a disability I wanted to say that our bodies are incredible, for they have produced our beautiful children. In no way should they ever be blamed for our children's conditions, a feeling that I know many of us go though, however fleetingly.

But we are also wives, sisters, partners, friends, not just mothers, and that is worth remembering too.

Of course getting naked was a terrifying experience, even very emotional, perhaps because the last time I was naked in front of strangers was in our home, giving birth to Natty. It's funny how your body remembers somehow. It's also like laying your soul bare, much in the way that writing a blog does. You can only be true to yourself and not worry too much about upsetting or offending others along the way.

So if you don't like nudity, look away. But perhaps I will encourage you to love your Mummy shape a bit more and thank yout body for the miraculous job it has done.

Oh, and if you'd like to donate to the DSA, DSi and our local support group, you can do so by 

texting DSUU47 £AMOUNT to 70070

Here's Blue Light Media Geoff's video explaining why I did it and how the day went.



            

Makaton Advent Calendar and Shabang Calendar for 2013

December is here!

A time for little ones to get beside themselves with excitement, a time for high street frenzies, a time for Mums and Dads to step up a gear. 
I for one am panicking about fitting everything in and it's Natty's birthday in a couple of days too!

Anyway, to help keep us on track many of us will be opening our advent calendars now. Downs Side Up were lucky enough to be asked to take part in a novel new online one, organised by the Makaton Charity, those amazing people who enable our children to communicate with us. Each day you can click on a window to see a short film of children signing a Christmas word or seasonal song. 

I somehow missed the email asking us to take part, so had about 48 hours to plan and film it. Mia was in a bad mood, Natty wanted a poo, picked her nose, looked the wrong way, the sun was in their eyes, it was too cold standing by the log pile, the fire didn't look right unlit, the light was wrong, they signed with their hands the wrong way round, they had a little disagreement, they were hungry, the phone rang, the snowman was over the wrong shoulder..... 

and finally, at the end of the day, when I'd nearly given up and they were in their PJs ready for bed, we got a cute take. Natty and Mia are signing 'snowman' on Day 3. 

View the free calendar here Makaton Advent Calendar. 
There is also an option to make a small donation if you wish.


Looking forward to the New Year, Shabang Theatre (their website is well worth checking out for other resources) have brought out a lovely 2013 calendar which would make an ideal Christmas gift. It features lots of happy children who happen to have disabilities, role models for us all indeed. It is bright, cheerful and guaranteed to put a smile on anyone's face.

Natty smiles at her Shabang calendar friends

The numbers are bold, as are the days of the week, with weekends in a different colour and it also features 3 Makaton symbols and signs to learn per month. So I think it will make an excellent teaching resource as well. 
I was lucky enough to have been sent one as a gift. I'm certain they will be brightening up many a kitchen from next month and you can buy them from the website, priced £9.99.

December page for next year

Tracy's Story of life with Miles

Tracy Upton, better known as one of the wonderfully inspiring duo Singing Hands, has had an article published about her journey with her son Miles since he was born. 

The Singing Hands: Suzanne and Tracy

The article, published in Families Upon Thames, resonated with me on so many levels, from the shock at birth, to how very much she has learnt so many life lessons from Miles, and the motivation he has given her to get out there and make a real difference for so many others.

Singing Hands DVDs are never more than a couple of days away from the TV screens in our house. Before Natty could talk, she could sign I'm Dreaming of a White Christmas after only watching the incredibly catchy ladies about 3 times, and she continued to sign that song until about June of the following year, such is the extent of how memorable they made it.

 Read Tracy's amazing story here.
So honoured to have been given a mention too.

Downs Syndrome Awareness Month #DSAM2012

The month of October is 

World Down Syndrome Awareness Month.
#DSAM2012

Each day I hope to add an inspiring blog, link, photo, event or nugget of information to 
help you get involved.

Day 1 - It's Down's Syndrome Awareness Month. Please help us gently change perceptions of Down's Syndrome from within hearts. Spread the word. www.downssideup.com

Day 2 - What to Say When a Baby is Born/ is Diagnosed with Down's Syndrome

Day 3 - Go and explore some new websites. Are you familiar with the Down's Syndrome Association? How about the Down's Education materials? Check out Singing Hands and Makaton materials. All the links are here.

Day 4 - I bring you a beautiful short film called 'Indelible'. Please watch. It has brought tears to my eyes with it's perfection. Indelible

Day 5 - Have you uploaded an image of your child to Downs Syndrome The Big Picture yet? This in an amazing UK-based art project on a scale yet to be seen.

Day 6 - Over in America, Noah's Dad is filling a Facebook page full of pictures and stories of children with Down's Syndrome on his Wall of Awesome Pop over and add your inspirational photo and story.

Day 7 - If you need reminding what an amazing parent you are, what a great job you are doing, if some days it feels like wading through a swimming pool full of treacle. Read this. Erma Bombeck: Special Mothers (and Fathers!) 

Day 8 - A picture speaks a thousand words Browse through our Photo Gallery of Hope.

Day 9 - Read an inspirational book, watch a powerful film, open your eyes with an innovative documentary... Here's our list of suggestions Please let us know what your favourites are.

Day 10 - Are you taking enough time for yourself? Read my experience of respite... and what happens when you don't take enough.

Day 11 - Photographer Richard Bailey and the DSA began the inspirational photographic competition Shifting Perspectives 8 years ago. Each year it features different aspects of Down's Syndrome. Our friend Rory was a winner last year and he is a photographer with Downs Syndrome. The beauty of this exhibition is that it is available as a free app for your iPhone or iPad.

Day 12 - It's Friday! Let's spread the inspiration far and wide. Join me by posting a beautiful photo or an inspirational quote today. Pop it on your Facebook page, on our Facebook wall or on Twitter with the hashtag #DSAM2012, or simply leave a comment at the bottom of this blog. Have a great weekend everyone x

Day 13 - 

Day 14 - Take this short survey by Circle 21, to compare facilities and support for those with Down's Syndrome worldwide. The best place in the world to live with Down's Syndrome

Day 15 - Watch the little film we made with a few other families to promote a local tourist attraction. Natty is wearing bright green trousers and is hard to spot as she is just like all the other kids in the piece.  Just one of the gang. Eden: The Butterfly Effect.

Day 16 - Shabang have produced an amazing 2013 calendar featuring lots of gorgeous children with disabilities. What wonderful role models they are indeed! Buy your copy here while stocks last.

Day 17 - I am so envious of anyone who lives near enough to attend the amazing Disability Rocks Festival in Leeds this December. Not least because our idols Singing Hands will be there. If you do live within travelling distance, check out the event here.

Day 18 - Would you like to meet Natty and I? Here we are doing a little interview at home about how Downs Side Up all began. Listen out for Natty thanking her chickens for their eggs...

Click here for the ITV interview

And here is Wednesday's BBC Radio Devon interview with Fitz on the subject of proposed changes to Universal Credits. Click here. 35 minutes in.

Day 19 - A timeless tale of a little girl, a lost tooth and a golden chromosome Princess Natalia and the Toothless Fairy

Day 20 - Sleep Solutions: A Guest post by sleep practitioner Jane Armstrong. Sleep Solutions for children with Down's Sydrome

Day 21 - The British Institute of Learning Disabilities are an amazing group of people who offer research, support and training for adults with learning disabilities. I was recently honoured to be asked to take part in their annual conference and deliver the keynote speech. To say the it was a learning curve for me is an understatement. Read about my experience here. 

Day 22 - A little gift of thanks to our 2000th Twitter follower. Thank you to everyone who is helping to gently change perceptions of Down's Syndrome from within hearts. (I can't send you all a pressie though!) 

Day 23 - Now it's time to really get invovled.It's time to share your stories.

Day 24 - A candid behind the scenes film of the making of the Eden Project promotional film that Family Downs Side Up took part in. I almost like it better. Watch out for Natty running through the flowers and catching sight of the camera :)

Making of the Eden Project promotional video, featuring Downs Side Up

Day 25 - I am extremely proud to have been asked to get involved in an exciting new book project which is due to be released soon. I have been asked to present at the launch on 21st March 2013 as part of World Down Syndrome Day. More beans as soon as I am allowed to spill them :)

Day 26 - Natty wrote her name independently for the first time yesterday. Here are a collection of ideas that have worked for  us on her journey towards writing. Writing Tips for Children with Down Syndrome from Jolly Phoics, to Ruth Miskin. There's a little video too, filmed by Natty's big sister.

Day 27 - Natty is featured in Jojo Maman Bebe's Christmas catalogue which comes out today. We are so proud of her for teaching society that beauty comes in many forms x

Day 28 - Spread the Word to end the R Word. Sign an online pledge to never use such language and read the beautiful letter from the Special Olympics athlete with with DS to those who use insulting language to refer to those with learning disabilities.

Day 29 - Medical Mondays by Jen Logan over at Down Wit Dat. Jen is a nurse and Mum of twins, one of whom has DS. She is a font of all knowledge. Pop over to read about the brain, thyroid and history of DS.

Day 30 - The  Down Syndrome Research Foundation work for medical research to improve and maintain the quality of the lives of those with Down Syndrome. There is a group in the USA and in the UK. Read about the latest trials they are involved in above.

Day 31 - Down Syndrome Awareness Month comes to an end... Thank you all for joining us. I for one have learnt so much and have been bowled over by the supportive network I am part of.

Review of Something Special Toys by Golden Bear

I have never done a product review before.

It's not that I've never been asked, I've refused quite a few.  You see, I really want Downs Side Up to remain a haven for those seeking information about Down's Syndrome and I don't want them to stumble on the site and be hit by irrelevant reviews as the first thing they see.

However, I have always said that I am not opposed to doing a review of a product that was relevant to my readers, one that I would actually go out and part with good money for, one that would stimulate and educate my girls. I was waiting for the right product to come along.

Well such an offer arrived and I jumped at the chance to trial and review none other that the much anticipated... long awaited... desperately needed... new range of...

SOMETHING SPECIAL PRODUCTS by GOLDEN BEAR.

Yes, that's right, you heard me correctly, MR TUMBLE TOYS are hitting our shops right about now!

Now I'm sure you all know who Mr Tumble is and have sat through hours of Someting Special, but for those that hail from Jupiter, Mr T is not someone from the 80s hit show The A Team, but instead a zany character on the CBBC TV hit children's show Something Special. Together with his alter ego Justin they find things that are in Mr Tumble's yellow spotty bag, using a combination of speech and Makaton, the invaluable sign language used by many parents of children with speech delay, and increasingly children without any language issues.  To read more about our experiences of using Makaton as a family, click here.

The package arrived (sadly not delivered by the effervescent Mr T himself) and I eagerly opened it.

We had been given 3 products to try, although there are more in the range. I decided to show Natty one product at a time, making her shut her eyes before I put them in her hand to enhance the surprise. She is, after all Mr Tumble's biggest fan.

So who are these products aimed at? I'd say all pre-schoolers, any child who loves Something Special and many children who have additional needs and who use Makaton as a means of communication.

First came the Pick n Match Pairs Game (Retailing at around £4)

Getting to know the cards

A set of 36 flashcards that make up 18 different pairs. Each card features an icon or a character from the show as well as a small picture of Justin acting the Makaton with the word clearly written below. 

The cards are of comparable quality to other flashcards in our cupboard and are small enough and sturdy enough for little hands to hold. The images are clear and visually stimulating and Natty was familiar with all of them. 

I would have found the word and sign repeated on the reverse of the card useful, so that I could see and sign whilst holding the card up to Natty to identify.

Pairs, memory game and snap

Everyone loves sets of matching cards for there are so many things you can do with them. So a set with your Makaton super hero on them will be a must for most families. 

We played Find the Matching Pairs with the cards face up, Find Matching Pairs Memory Game with the cards face down and Snap. I also spread a selection of cards on the floor and asked Natty to find and stand on one. And finally I gave her one card (eg boots) and told her to scuttle off around the house to find the item. The possibilities are enless...

Mia signing 'flower' to Natty, who said 'poo, it stinks!'

The second Toy was Mr Tumble's Phone (price tbc). 

'Hello. Yes, I'll put him on the line.'

Children can listen to 1 of 3 of their favourite characters on the phone by inserting a disc with a picture of the character into the phone. (Spare 2 disks can be stored in the back of the phone when not in use). When you press the chucky button at the bottom the characters say familiar phrases which children will love to copy or respond to. 

Natty whispered 'I'm fine', when Mr Tumble asked how she was.

Again the product is small and chucky enough for little fingers or to pop in your handbag for trips out. The volume is quiet enough to put to your ear without being deafening or alarming (or annoying) and the button is easy to locate and press. Other phones on the market do more, but sometimes simplicity is the key as children will quickly learnt to press and get an immediate response from their favourite characters. 

I think in time the stickers on the phone and character discs might peel off (depending on how dextrous and inquisitive your child is).

Finally, I gave Natty the Mr Tumble Activity Toy  (around £17). 

What is it? Mr Tumble! Here's a kiss x

She was delighted and squealed 'oooh, Mr Tumble!' and planted a large kiss on his cheek. I'll say straight away that this will be the toy that everyone wants for Christmas or birthday this year and it will be the one that sells out. So buy it well ahead of December. You have been warned.

The toy is soft, colourful and appealing to look at (although slightly slimmer and younger that his on screen counterpart. Sorry Justin ;) ) When you squeeze his hand gently he says a selection of phrases clearly and audibly. His nose lights up (perfect for taking to bed), there is a rattle in his hand to stimulate the senses,  and children can unvelcro his shoes and coat. The toy has quickly become a companion for Natty and her big sister, who thinks it's hilarious to make up conversations with him 'Do you like my waistcoat?' 'Yes, Mr Tumble, it's spot on!' 

This doll will have universal appeal to girls and boys, is the perfect size for a snuggle and easy to use even if you have manual difficulties.

I understand that there is a tea set and a spotty bag in the range too.  I might just be tempted to put those in Santa's stockings. So, the range comprises toys at different price ranges and to suit different children. I'm sure there is something for everyone in there.

And here's where I found Natty later on... hiding under her bed talking on the phone!

(We were given these toys to review but received no payment in addition. I have been honest in my appraisal of the products. They will be widely available in supermarkets, online and all good toyshops very soon.)