The Power of the Humble Blogette: an example

I never knew when I started poring my simple musings into my Mac that it would mean strangers coming up and shaking my hand. Well that's exactly what happened this weekend.

We had popped into town for summer sandals. 
This is a tricky job at the best of times. 

The combination of Saturday bustle, busy pavements, a child who hates being measured but loves to show off and leap around the shoe shop shouting 'chase me', a daughter with very distinct fashion sense hellbent on black patent rather than strappy summer footwear, the constant wrangles over walking properly, holding hands to cross roads, the mantras we repeat to encourage road safety, the swinging her along between us to cover the few hundred yards back to the car when she has given up walking, my refusal to use a buggy if its only for my convenience, little shops that don't stock the size you need, lack of choice under one roof, 2 children to find shoes for in one trip....

Anyway, it was definitely a 2 man job and it took all our patience and might, some jelly sweets and the promise of a playing of Mary Poppins to deal with it with a jolly smile on our faces.

With 2 pairs of identical sandals purchased from shops at opposite ends of town in the bag, it was time for sustenance. 

We stopped and flopped in a hearty healthfood cafe and ordered jacket spuds and tea to boost our spirits. The girls asked if they could sit alone. What a super idea we thought. They could feel independent and grown up sitting at a table right next to us.

As it happened the plan worked beautifully. They played with a few toys provided. Natty sat still, didn't get down from the table once and ate her simple lunch which Mia had cut up for her and they chatted together easily without interruptions from the parents. They felt very proud of themselves.

I noticed people looking. Perhaps they thought we were bad parents for banishing our children like this? Not wanting to sit together.


But no.

As we got up to leave a lady and her mother came over. They just had to tell us what beautifully behaved children we had and how touched they were by their closeness, how amazed they were by Mia's gentle helping way with her younger sister. They left by saying we must be very good parents.

Wow, what a compliment!


Then, as we paid and donned our coats, the shoe shopping stress a distant uncomfortable memory, the chef of the establishment came out from the kitchen with his wife. This was a couple of a certain age, who clearly work all the hours they can to run a successful eatery. I didn't have them down as blog readers.

The man leant forward and shook our hands. "I follow you on Twitter" he said. "What you do is amazing. I can tell it takes a lot of time." "What you do for others as a family is brilliant."

And there you have it. You never know who is reading your words and the effect it is having on them when you blog your heart out. Did this couple have any connection to Down's Syndrome? They didn't mention it if they did. And that has always been my aim. To gently change perceptions of the condition from within hearts, without people even realising that I am doing it. Not preaching to the converted, but drawing in those who are not.


If you enjoyed this post you might like to read Downs Side Up: A Gentle Mummy Activist

Our Local Hero: Natty G

Today a lovely positive little piece came out in our local newspaper. 

I was immediately struck by the positive headline. No 'Downs Girl' here as so many of the nationals have previously written about Natty. And the article quite rightly praised Mia for being as much a part of the success story.

The picture shows 'No Papps Natty' holding her glass star award for Child of Courage or Achievement of the Year, an accolade which she won for opening the doors of the advertising world to children with disabilities, changing the face of beauty and also being an inspirational role model to many families, changing perceptions of Down's Syndrome and providing hope (her middle name as it happens).

Interview with Natty G and Mummy

On Friday night Natty was awarded her Local Hero Award for Child of Courage or Achievement of the Year. We are still, quite frankly, riding very high on the emotions of the night.

Here is the little interview clip Natty and I made a few days before the glitzy ceremony. She makes me howl with laughter as she sets out her showing off skills. Thank goodness they left out her answer to 'Tell us about Mummy?'
The little minx said I had a 'Smelly bottom'.

I can assure you that isn't true.


              

It was all very last minute and a bit short notice (as you can see by my appalling hair!) but I hope we managed to work our positive magic anyway.

H x

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

Reader's Story - Tracy Awramenko

Tracy sent me the wonderfully encouraging story of her son Charlie. I love this picture taken of him at school. 

Charlie clearly loves school

• This is my youngest boy Charlie who is now 3 years old. 
  He is going to a special needs school and a mainstream pre school, both of which he loves. He has two older brothers who really look after him and adore him. 
  We are so proud of his little achievements, some many will think small but to us they are all big!! 
  He is a happy smiley little thing, who knows his own mind (stubborn like his parents), but he brings joy to all that meet and know him. 
  We cannot imagine life without him. 
  I love your facebook page. It makes me smile and gives me confidence that our family is not alone in the challenges we face, but those challenges are worth it xx

Highs, Challenges and Hopes Linky

I was recently asked by Kate of Kate on Thin Ice to think about the Highs and Lows of 2012 (Click to read) for our family.  It was an interesting excercise to think over the last 12 months and focus on my hopes and aspirations for 2013.

I thought it might be nice to share your thoughts on your year past and present, for it is always a balancing process to think about where you are and compare your worries and hopes to those of others. I find it makes me stop whining about the little things in life like bad service in a shop or an under par meal.

It's healthy to put behind us negative thoughts and focus on the best bits for the next year. I don't believe in unrealistic resolutions of the 'I will lose 3 stone in weight, become a millionaire and learn to be a Nigella in the kitchen" ilk. They can only lead to insecurities and frustrations.
Instead let's celebrate the important things in life.

If you would like to take part, all you have to do is answer the following questions and add your blog to the linky below. Alternatively, pop your answers on our Facebook page or in a comment below.


1) What was the high point of 2012 for you?

2) When was the most challenging thing, the part that tested you to your limit?

3) What 3 hopes do you hold dear for 2013?


Much love to you and yours for 2013.

The Christmas Nativity Star

Natty attends a mainstream primary school and last week Daddy Downs Side Up, Mia and I proudly watched her and her classmates perform in their second ever Christmas play.

Last year it was the traditional Nativity story, this year a jazzed up modern tale which included fish and penguins. Both were equally magical.

At least she wasn't rude to her fellow thespians like last year!

We rushed around to feed the girls after school, get them changed and returned for 5.30pm, all warmly wrapped against the chill of the dark December evening. We found a space to sit and chatted to other excited parents as we waited for the actors to ready themselves. 

As the action began to unfold, we sat and craned our necks to see a glimpse of our daughter past the heads of the other parents, all doing the same of course. Mia snuck down to the front of the hall and sat cross-legged, inches from her little sister. Once these optimum positions were found, all three of us didn't let Natty out of our sight for one moment, eager to catch every second of her festive role.

Well, the performance comprised some very nice singing, Natty joined in and all the words. There was dancing around the stage, waving wands and she knew exactly what she was doing and where to stand, interacting with her classmates perfectly.  She stayed where she should during the times when her group was not under the spotlight. Most of all, she was really enjoying herself.

There was also:

a little bit of nose picking, 

a small amount of fidgeting, 

a stand up and wave at Mummy 

a poke of her neighbour in the back with her wand

a couple of verses where she sat and yawned instead

"Oh dear," I thought.

And then I looked at her peers, all 30 or so of them, and I noticed these behaviours were, of course typical for any only-just-six year old. Mia had done exactly the same back in her day too.

And so, our Christmas play experience was much the same as yours I should expect, and that of your neighbour's children, your cousins and your neices. 

Each and every one a Christmas Star.

Changing Perceptions of Down's Syndrome in MAMA UK

I'm proud to have been featured in a new online magazine called MAMA uk this week.

Changing Perceptions of Down’s Syndrome

PARENTING

by alice  |  on December 12th, 2012  |  0 comments

This summer as a new mum of two I attended BritMums Live!, a blogging conference held in central London. I love such events, they not only provide a great learning experience but it’s also an opportunity to meet and mix with friends you have known online for years. And to enjoy a bottle or two of Prosecco, natch.

One of the most popular features of BritMums Live! is the Crowdsourced Keynote Speakers, which is the final item on the agenda. It’s a carefully curated hour of blog posts that are read out to the assembled audience by their authors.

This year I was so deeply moved by one of the speakers that I have been shouting about it ever since...

Read the rest of Alice Arnold's article here: Changing Perceptions of Down's Syndrome with Downs Side Up

Natty on ITV Daybreak

Today we will be chatting on Twitter about people with disabilities being represented in advertising and the media in general. Mencap and Seb's Mum will be there too.

As you know Natty models. It is just one spoke in the wheel that is Downs Side Up, more of a talking point for change and a symbol for inclusion society wide than anything else.

Do join us on Twitter between 12 and 2pm if you have a moment and use the hashtag #adinclusion. Let's tell the world how beautiful our children are!

For a little background, I've dug up the DVD of Natty and the rest of the family when we appeared on ITV Daybreak 6 months ago. We chatted about life, chromosomes and cake mainly!
My how she's grown since then and Mia has since grown all her big teeth! We had a suitcase stolen en route to London in the train, so we are rather hastily dressed out of what we had left and a last minute shopping dash to Oxford Street.

Watch out for Natty stealing cake *signs the Makaton for cake*...

(Please excuse the quality, I videoed it from the laptop. I'll work on redoing it.)

Reading and Writing Tips for Children with Down Syndrome

Natty writes her name independently

Yesterday I found a scrap of paper on which Natty had written her name, independently, without a model, and without anyone even watching. 

This was a momentous occasion for all of us, something we have been working towards for years if the truth be known.

I don't have all the answers, or all the ideas that will work for your child, all children develop at their own pace and enjoy different activities. Natty just happens to like writing and here are a few of the things that worked for her as she begins to write. 

We didn't do these activities exhaustively, but at Natty's pace and when she felt like it. Doing activities in a fun way in short bursts is much better than forcing your child to sit and endure a task for a long time. Other activities for speech and physio took over at different times as did hospital stays and so on. This is just a guide.

When Natty was around 2 years old, a speech therapist from charity Symbol UK visited our local area and told us she was ready for sound work. We were using Makaton and Natty was making some lovely sounds and simple words at that point (It's hard to remember, but I think 'Daddy' and 'cake' and 'star' and 'biscuit' were among her first essential utterances.) We were also using the See and Learn materials from DownsEd which involved matching pictures in the early stages.

She put 2 cards in front of Natty, one with an 'a' and one with a 'n'. She then held up an 'a' card and using Makaton she asked her to find the 'same'. Natty did this with her eyes. I remember watching her closely and seeing her look at the other 'a'. She had done it!

This was a very emotional moment for us all and there a few tears. Why? Because we could have been doing this sooner, but had lacked the guidance. Because we were relieved to see the way forward. Because we wanted everyone to know what was possible for children with DS. Because we knew a lot of hard work was going to be involved from now on...

Jolly Phonics and Ruth Miskin cards

We rushed out to buy various sets of flashcards with the letters written clearly on them. A set sat in the bathroom at home and pre-school (potty time seemed to work well for us as a time to work with sounds). Most usefully we bought 2 Jolly Phonics friezes, from Amazon, showing all the sounds and an accompanying action. For example 'a' is a tapping motion going up the arm, signifying 'ants crawling up the arm'. 

We played the CD with catchy rhymes in the car. (Available from ELC).

Children with DS are visual learners, so seeing a picture as well as doing/watching an action helps cement the sound they are hearing/producing (in the way that Makaton works wonders for language development).

Daddy Downs Side Up and I spent a week of evenings cutting them to size, laminating them and rounding the corners for safety. Time and money well spent, as we still use them. If you can beg, borrow or buy a laminator you will use it constantly.

• Focus on one sound/action at a time.
• Choose sounds your child can already make at first.
• Then show 2 different cards and ask them which one is 'a' for example. Looking at the right card counts as a correct answer, so little one doesn't have to be able to point.
• Children who are able to walk love finding the letter sounds hidden around the house, or jumping onto the correct sound on the floor.
• With 2 set you can play snap and other matching games.

When Natty began school at 4, she knew most of her phonic sounds by sight. However, she began reading, using a whole word approach. There is evidence that children with DS are very able at this, recognising whole words by shape alone. It's very useful for high frequency words that follow no logical sound pattern as well. So we: 

• Made flashcards with words on and stuck them around the house/ on the fridge 
• Matched the mini flashcards to words that were the same within texts. 
• Made simple games of snap/bingo with the words

She then began reading simple texts using these words (Oxford Reading Tree), but we kept up the individual phonics work with a view to her learning to blend and write. After all, we all read using a combination of whole word recognition, blending and prediction based on understanding of what will come next.

Natty traced her name onto her
Pre-School graduation mortar board

Next came learning to write these sounds that she could by now read. 

The correct writing position is vital, so that your child has core stability, giving the strength to write.

We purchased a variety of pencil grips and played around til we found one that suited her fingers. We then found triangular pencils with grooves cut in them and we moved to those.

We began by using dots for Natty to trace over (you can find fonts that do this on your pc or you can create the dots freehand), letter shapes to colour in (free downloads are widely available online) and guided Natty's arm from the elbow to make the shapes to encourage errorless learning. There are also letter tracing Apps for iPhones and iPads.

Natty the Kumon tracing books (available from Amazon) as they provide simple steps to writing in a fun, bright and interesting way.

Natty's TA made sure that she was sitting in a stable position at her desk. In order to have core stability and pencil control your feet must be grounded. At school Natty has a foot wedge, a textured cushion which stops her fidgeting and a writing slope. At home we used either a small chair and table, or later on a Tripp Trapp chair which has a built in foot ledge. You could use cushions, books or a toilet step for your child's feet. We found a writing slope in IKEA for around £2.

Seating position is crucial

A writing slope makes life easier

To stop paper and slopes sliding around cut a length of non slip material (available from kitchen shops) to put underneath.

When Natty was showing signs of being ready to write independently, we introduced the Ruth Miskin flashcards (part of the Read Write Inc scheme), again a couple of pounds from Amazon. They show a picture within each letter and give you a catch phrase to remember how to write each one. (Shown above).

• 'round the apple and down the leaf' for 'a', shown above.
• 'down the tower and across the tower' for 't'.
• 'down the horn, up the horn and round the yak's face' for 'y'.
• For the capital N of her name we just shouted 'up down up STOP', which Natty adored.

Natty practised writing over countless different printed towers, apples and yaks, before we removed the pictures altogether and simply repeated the phrases as she wrote. We are just at the beginning of the writing journey, but here she is, writing her name without help and leaving it proudly for Mummy to find.

Here's a little video we made at home last year of Natty, in Reception class, learning her sounds and words and beginning to read. Mia was the camera woman by the way!

The Toothless Fairy

Once Upon A Time there lived a little 

Princess called Natalia

"Natalia, I saw your tooth fall out so I came anyway. T Fairy :) "

She lived a very charmed Downs Side Up kind of life with her Mummy, Daddy, wonderful big sister and their 10 happy hens. Natalia had a golden extra chromosome which made her tinier, but no less and no more sweet than her older sibling.

Now Natalia was a girl who loved to do things in her own way and at her own pace. Woe betide anyone who tried to rush her, or indeed lend her too much of a helping hand.

And this was just as true in matters of the teeth as it was in any other of her daily activities. The little pointy white gnashers sat stock still for around a year after her classmates had begun to lose theirs. And when they began to wobble, they did it style. Achingly slowly, twisting and bending, teasing for months. Natalia refused to wiggle them to help them on their way. Instead the new adult teeth pushed their way out behind them, crocodile style. And still little pegs refused to budge.

One day, Princess Natalia had a tumble whilst chasing her friends. She banged her pretty little chin on a bench and those stubborn baby teeth received a knock. A drop of blood could be seen on her lip. But she continued to cling on to them.

Only now they had been shaken beyond the point of no return, whether Princess Natalia liked it or not.

The first one fell out that very evening over dinner. But Princess Natalia didn't make a fuss. She simply popped the tooth at the side of her plate and carried on eating. Her priorities were clear. 

After dinner Mummy and Daddy found the tooth and everyone was very excited. They celebrated the occasion by dancing around the kitchen, clapping and hugging each other just as they did when Princess Mia's teeth fell out. Everyone was proud and perhaps just a little sad, because Princess Natalia was now growing into a beautiful bigger girl, and leaving her babydom behind.

That night, she popped her tooth into the special fairy cushion that has been used for every lost tooth for years. She was tucked into her bed and read a story about the tooth fairy, with pictures of her in it. And as if by magic, in the morning she found a golden coin, the same shiny golden colour as her magic chromosome, and a brand new toothbrush with a handle like a crocodile. The tooth fairy was having a little joke about her double row of teeth perhaps...

The second tooth that had been given a knock was ready to fall out too. Mummy took Princess Natalia to the dentist to check that everything was fine and that profilactic antibiotics weren't needed. The dentist smiled and said all was well. Mummy and Daddy talked a lot about the next tooth coming out, and the cushion hung up to see in her bedroom where she could see it.

However, later that week, as Mummy was helping her to brush her teeth before bed, she noticed that the second tooth was missing! Where, oh where had it fallen out? The family searched around but to no avail. Natalia didn't seem worried and everyone decided that it must have fallen out in the park that afternoon. They tried not to worry about whether it had been swallowed.

Mummy wiped a little tear from her eye. Mia was scared in case the tooth fairy wouldn't come. Daddy was very quiet. Together they hatched a plan, with a little help from their online Downs Side Up friends, who told them that many of them had had mysterious disappearing teeth too...

They left the special pillow out on Natalia's bed, with a tiny note, explaining that the tooth was lost. They hoped that that would be enough for a repeat visit from their flying friend. Princess Natalia cried a little that bedtime and said she was sad, perhaps because she didn't want her tooth to fall out at all, perhaps because it was lost.

But lo and behold, in the morning the tooth fairy had been! She had left another golden coin and a teeny tiny note on which was written in teeny tiny writing 

"Natalia, I saw your tooth fall out, so I came anyway. T Fairy x"

We decided that that meant her name began with T, possibly Tabitha. Everyone squealed with relief.

And so you see, the moral of the story is that having an extra golden chromosome doesn't really change your rights of passage of growing up, like losing teeth and waiting for tooth fairies. They might flutter in through your window a little later in life than they did for your brothers and sisters. You might need what is happening to you explaining a little more clearly, with pictures, but in the end it's the same experience. And some experiences are really worth waiting for.

Mummy x