A Cosy Night in on the Night Before Christmas

Christmas Countdown

The Christmas countdown has truly begun. School's out, the Twiglets have been cracked open, the mistletoe is up and (in Natty's case) the Singing Hands Christmas Cracker DVD has playing on a loop for at least a month already.

Keep things safe, cosy and simple this Christmas Eve

Fuelled by lots of coffee and a little mulled wine, just like millions of parents across the land, I am trying to cross items off my ever-growing hastily scribbled list of things to do, inevitably with increasing slapdashery (I've reached the stage where I'm not even sure if that's a word). 

There are last minute gifts to buy and wrap, prescriptions to collect, popping round to neighbours with cards handwritten by Natty, hitting the supermarkets at anti-social hours to avoid the crowds, excited teens to entertain, crafts to cobble together and our seasonal traditions to honour.

Flemish Painting Features Angel with Down's Syndrome

The Adoration of the Christ Child

This oil on wood painting shows a classic nativity scene, and the little angels kneeling at the front on the left clearly has Down's syndrome. Some think the shepherd at the back on the left also has an additional chromosome.

At the time when the work was created it was common for the faces of those who had commissioned the art to feature within it. Perhaps we are looking at the face of the much-loved daughter of a wealthy and proud 16th Century Flemish family here. 

The 1515 Flemish painting, by an unknown artist, depicts an angel (next to Mary) and possibly the shepherd in the centre of the background, with Down's syndrome.

It's wonderful, and it shows that Trisomy 21 has been around for a very long time. The Flemish artist is unknown, but was a follower of Jan Joest of Kalker. The painting resides at the New York Metropolitan Museum of Art. 

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

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.

Christmas Decorating Ideas to Delight You All

We all have our own style when it comes to decking the halls at christmas time and I guess the way you make your home festive is as individual as the people living in it.

Countdown to Christmas: Fabulously Festive Advent Ideas

Yes, it's December! 

It's the countdown to Christmas!

I don't know about your children, but Natty could quite happily sit and watch Singing Hands Christmas Cracker 2  for hours on end and listens to the CD in the car on a loop. Wonderful as this is, we try to bring some balance to December as well!

There's a lot of chat about the beginning of December being too early to put up decorations, about the Elf on the Shelf being creepy, about Xmas consumerism taking over the whole of the month. I think that each family is different and you must find what suits yours and simply don't allow it to become something that you don't feel comfortable with. 

Just do it your way.

Natty's fabulously festive advent ideas to get you ready for Christmas

Explaining the Radio Silence: What Have We Been Up To?

Sometimes life rattles by at such a pace doesn't it. I mean really, where does the time go?
There are so very many things in the air at the moment but I just don't seem to be able to find the time to sit here and share them with you over a cup of tea. 
My friend Emma says that she enjoys a little catch up newslettery kind of a post once in a while, so here goes... 

Something for the Weekend 

Read all about it              

We've been busy on the media front. A couple of months ago we were interviewed by The Guardian Weekend Magazine for a big spread about Down's syndrome. The piece has been on hold for a while and I had to promise not to talk to any other publications, (it's hard for me to keep quiet but I did!) but the time has finally come and it should be in this Saturday 17th supplement. 

I'm nervous, I always feel very vulnerable when we go public as a family, but I trust the journalist implicitly. And to be in a paper I often actually buy is quite a novelty. I still won't be reading the comments though.

Changing Perceptions in Sequins and Glitter 

Natty being preened for a glossy photoshoot

Then back in August Natty and I went up to London for a photo shoot for the UK's largest selling glossy magazine. It's for the Christmas edition which comes out next month, so more about that nearer the time...but needless to say I am bursting with pride that they wanted a little model with Down's syndrome within their posh pages.  Natty certainly is changing the face of beauty one smile at a time.

Did I tell you she called a fellow passenger a 'big fat pig' on the train on the way there though? She did. She actually did. She wasn't, she was lovely and brushed it off with a laugh. Lucky.  *Sigh*

Charity Christmas Catalogue 

Mencap have taken two large boxes of our little book for children I Love You Natty to sell in their Christmas Catalogue this year. We are so very excited to be able to reach more young families, support groups and school this way. 

*shameless plug* 
And with profits going to the learning disability charity, what better reason that to buy a copy for someone's stocking this season. 

Training Professionals 

Remember we popped up to Edinburgh in August to make a podcast film with Hazel Powell and the NHS Education for Scotland (NES), and meet nurse and midwife trainers and well as the lead nurse for Scotland? Well, the film is finished and nearly ready to share with the world. We've watched it and hope that it will provide a springboard for discussion in medical professionals' training, particularly in the arena of delivering a diagnoses and supporting new parents. I am quite certain that it's a powerful watch.

Paul and Emma give an inspiring speech

Last week, I headed over to Northampton (which turns out to be incredibly tricky to reach from Cornwall!) for the National Portage Service Annual Conference. I was lucky enough to be able to share our journey and experiences of Portage with other families and professionals, as well as learning so much from the other speakers, including Paul and Emma who share a house together and live independently with support. 

Writing for Change

I've had a couple of very exciting writing projects to get my teeth into as well of late. I was asked to produce a chapter for a book on improving the healthcare of people with a learning disability which is just about finished. Well, it's been submitted but I keep tweaking it and writing to the author with an updated file. 
Must. Leave. Alone. 
Sorry Steve.

The British Medical Journal also asked for an article for doctors working with adults with Down's syndrome. With a massive amount of input from actress Sarah Gordy from Wood for the Trees, and speaker James Hamilton, who both have Down's syndrome, as well as the General Medical Council, the piece is nearly finished. I've really enjoyed working on it and have learnt a great deal in the process.

Oh, and The Department of Health published a little piece about Natty starting primary school as part of their #BestStart0to19 campaign last week. You can read Transition into School: Small Steps for Little Ones with SEN on Viv Bennet's site at here.

Awards 

MAD Blog Awards
I was an emotional wreck after being announced the winner of the MADs Blog Award for Outstanding Contribution. To say I felt over-whelmed was an understatement. My face mostly looked like this all evening: 

Proud, humbled and emotional at the MAD Blog Awards @TomArber

I bumbled through an ad hoc acceptance speech. And cried. A lot. Thank you to everyone who put my name forward. It really means such a lot.

Mumsnet Blogging Awards
Then more excitement. Mumsnet is also a large network of very serious writers and I could never have imagined that Downs Side Up would be chosen from hundreds of entrants as a finalist in the Campaigner category of their blog awards, alongside the simply incredible bloggers Comeback Mum and Complicated Gorgeousness, all winners. 

I actually had a bit of a funny turn when I saw this news but am now looking forward to a group hug with the others at Blogfest, coming up in November. 

Learning Disability Champions
I also found my name listed as a Learning Disability Today Champions finalist. I find this very embarrassing. I have sat on this news for weeks because I can't bear to keep bleating on about awards... new parents landing there don't want to read that. But by the same token I am hugely proud to have been considered by medical professionals and the editors of Magazine Learning Disability Today as a leading parent advocate in the world of LD.

So many of my inspirations and gurus are also listed, from teaching staff, to nurses and self-advocates, as well as fellow bloggers. We are all working together for better understanding and equality for those with a learning disability. So pop over and have your say here. 

********

I think that's it for now. We are off for a family break together shortly and that is the best news of all. Uninterrupted time with our girls. Because at the end of the day, we are just an ordinary family, doing what ordinary families do.

Saying goodbye to the year with gratitude: Remembering the greatest gift of all

Christmas is a time for us, a time to simply be, to enjoy and remember. A time for gratitude, and for us, a time to recall receiving the greatest Christmas gift ever.

Family Downs Side Up (I'm behind the camera)

My fingers can never quite manage to meet the keyboard, to tap out those precious memories to share in blog form. So many posts in my head but once in a while it's important to pull the online plug and focus solely on family.

This December, as always, my mind turned to our wonderful medical saviours over and over again. From the time of Natty's birthday on the 6th December until the anniversary of the day we were allowed to bring her home from the neo-natal unit on Christmas Eve, 8 years ago, I slip constantly into an emotional reverie. 

What are your top Christmas books to share with your children?

What are you reading with your children this Christmas?

Oh how I love the lead up to Christmas. 

To be honest it's the most emotional time of the year for me, the busy-ness of trying to finish various writing deadlines, the rushing, wrapping, buying, lists, more lists, lists of lists, the baking, the school appointments and commitments, the community gatherings, the dropping of gifts to friends and neighbours. 

The desperate attempt to tidy the house, clear the way and make the beds before our guests arrive to share that special time with us. It's busy, I feel tired, but I cherish this time. Illness invariably creeps in trying to scupper our festive plans. But we try to keep a clear cool head and carry on.

Mainly we love keeping it simple in our house. It's about baking and eating and walks and films and board games and music. We sing together and craft and act and read a lot.

Each year we buy one or two more Christmas books to read and share together throughout December, and now that Mia, our eldest is nearly 11, we have quite a collection. 

So what are our favourites?
Well, we put it to the test, asked the children, did a tally of requested reading this month and this is what they came up with:

Our top books for sharing with children this Christmas

Christmas wishes from Downs Side Up

The Goleniowski family would like to wish you a very happy Christmas and a healthy and fulfilling 2015.

Christmas wishes from Downs Side Up with love and gratitude

May we take this opportunity to thank you for your support throughout the year. Our internet community has worked together more closely than ever, collaborating to create a powerful team, advocating for better understanding and inclusion. 

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. 

Advent Countdown to the Nativity

Watch our Nativity Vlog below.

December is suddenly here and we are offically allowed to talk about Christmas! The countdown to the big day has begun with fun advent activities for the children.

Advent countdown to the Nativity

These include reading their favourite Christmas books, opening their advent calendars at home and virtually on the Makaton website (watch out for Mia and Natty who made their little video last month), practising for their school carol concerts and nativity plays, writing cards for friends and teachers, helping to decorate the house and joining in with creating homemade festive crafts.

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...

Shine Bright Natty: Nativity Star Realisations

Star

was one of Natalia Hope's very first words. (Along with 'cake' and 'chocolate' and 'more'!)

And her name means 'birth', a December-born baby who was allowed home from hospital on Christmas Eve. The greatest gift ever imaginable.

Our little star 
loves this time of year, the lights, the twinkling, the craft activities, the gifts, the sing-along DVDs, the family and friends. She'd happily let the festivities carry on all year if she could. I wonder if you know anyone like that...?

There's so much to do, see and take part in, a veritable sensory learning paradise for many children. Of course one of the most anticipated dates in the calendar is the school play or concert, and this year Natty's class are staging a classic Nativity. Last year it was The 3 Little Penguins and Natty nose-picked, danced and grinned her way through the performance, just as her peers did, literally dressed as a star.

Last week I opened Natty's book bag and removed a slip of paper. I think it read along the lines of:

Your child, Natty

will be performing in the Christmas Nativity play

as Mary.

Please supply dark leggings and a white top.

(And bring tissues.)

At least I think that's what it said because I didn't read past the word Mary. Tears welled up in my eyes. Daddy Downs Side Up complained of dust in his eyes too. We hugged our little star and signed 'proud' through our smiles and tears and whoops of excitement.

Now everyone I have told about this says, 'Ahh how lovely.' Or, 'Oh she'll love that!' Or, 'You must be so proud'. I bet your first reaction was just that too was't it?

Yes. 

Yes. 

And yes. 

It is. 

She will. 

And we are.

The day she arrived in our lives I foolishly feared we would never step out in public again. Then there were our worries over whether she would survive heart surgery. I was afraid to love her unconditionally in case she didn't make it and it would hurt too much if I had taken that leap. We had no idea of what lay ahead, but we vowed to take one step at a time and always follow Natty's lead in what was best for her with regard to schooling and interests.

So to hold a piece of paper in my shaking hands saying that she had been asked to play the central role in the (mainstream) school production was beyond wonderful, beyond our wildest dreams. This year Natty would be the star alongside her 'typically developing' classmates. My heart was bursting out of my chest with pride. 

The part is made for Natty I must say, she gets to stand centre stage, she'll think all the applause is for her, Mary isn't a big speaking role, just a couple of precious lines that we have practised so hard that she is shouting them in her sleep, and she gets to hold a much-cherished doll throughout.

(I just hope she doesn't have a grumpy moment as she did when she played a sheep 2 years ago...)

The grumpiest nativity sheep ever?

So why then are the tears of pride stinging? 

Why are our hearts alternately singing and weighing heavy? Why do I want to add a 'but...' to your ooooohs and aaaaaahs? Why am I a little nervous of the event, fearing making an emotional fool of myself?

Because seeing Natty up there on stage, playing the most famous and gentle mother of all mothers, the Virgin Mary, lovingly holding the symbolic baby Jesus in her arms will be a very powerful and graphic reminder that our youngest daughter is unlikely to ever become a mother herself. Even if she was physically able, it wouldn't be in her best interests emotionally, for becoming independent and able to look after herself with support is our best aim. 

The day she was born I sobbed over this fact. I grieved the loss of the Grandchildren I assumed she would bring to our family. It came from some primeval place deep within my soul, a place that the head cannot rule over however logically you try to reason it out. I thought I had come to terms with the fact over the years, I can watch Natty play with dolls now without her words 'Look at my baby', sending me rushing for my sunglasses. But I realise, sitting here with tear-stained cheeks after driving home from school releasing chest-deep sobs alone in the car, that I am far, far from that place.

Now, Natty's fairy Godmothers don't have any children. Her Great Cousin doesn't have any offspring. One of my dearest former colleagues cannot bear the thought of reproducing. 
But for all of them it was a lifestyle choice, a decision that they made.

My oldest chum and her partner were unable to conceive and have just adopted a gorgeous little boy after years of heartache. Having children isn't the be all and end all in life, but if you want them and are denied that privilege it takes a lot of soul searching to come to terms with that fact. It's a loss, an empty void, that is hard to fill.

And one day we will have to have that heart-breaking conversation with Natty, who may or may not understand the whys and wherefores. 
We will have to explain to a young woman who loves babies, that she cannot become a mother, as her elder sister is likely to.
I hope the realisation doesn't crush her.

Perhaps she will fill her life in other ways, get a job in a childcare capacity, or maybe it will never cross her mind to be a mother and I am overthinking the whole thing. It's all a long way off and I don't know any of the answers yet. I don't even know what all the questions are. I will look to the families I know and respect who have led the way for advice and support.

I do know we will have to turn being an aunty (which she and Mia are already) into an important and valued starring role, just as we view motherhood.

Aunty Natty teaches nephew Baby Max to say 'Oooo'.

So if you see me sobbing in a village hall at 6pm tomorrow evening, please excuse me. You now know it's not because I am over proud or pathetically pushy or super soppy. 
You'll know it's because I am taking in and assimilating all of Natalia's unique star qualities. 

See the photos taken during the nativity performance here. 

It was 'alright on the night' as they say. 

Festive Fine Motor Skill Fun: Paper Chains!

It's that time of year! A recycling box full of unwanted catalogues and children wanting Christmas craft ideas.

Once I've flicked through them, if I even get time for that, I pop them straight into the recycling bin, making a mental note to remove myself from the umpteen mailing lists. 

That is, until last week when Natty was off school due a sudden bout of bed and pyjama-covering vomiting. Clearly not able to go to school but jolly and chirpy in herself, we decided to settling down to a spot of Mummy and daughter making and doing.

The plush paper booklets, fliers and leaflets lay on the kitchen table as we ate our breakfast, promising ever more original gifts for the neighbour, teacher, pet dog... 

AHA! I thought. They were all in festive colours, silvers and greys with touches of red and green splurged on them. They would make perfect Christmas decorations: paper chain material! 

In the past I have bought costly paper chain making kits, the sort where your child ingests copious amounts of glue, licking the ends to stick them together. They look lovely but... we would have a go at making our own, for a fraction of the cost.

You will need:

unwanted Christmas catalogues

scissors or a guillotine

stapler 

I cut the paper into roughly similar widths and lengths then Natty began looping the strips through each other and holding them in place while I stapled them together. I was struck by how fiddly this was and what a super little exercise for developing her fine motor skills. Her Occupational Therapist would have been proud!

She even demanded to do it all by herself. The stapler was a little stiff for her small hands but with a bit of help she got the hang of it. 

The results were better than I could have imagined, we made meters of the cheap decorations over a few days. And more importantly Natty learnt a new life skill and she was kept occupied while getting over her tummy bug.

Happy Christmas artsy crafty creating!


Check out our Christmas Pinterest Ideas here. 
You might also like to read Painting a Triceratops: Fine Motor Skills Development here. Or try Christmas pretzel biscuits here.

Merry, Happy, Healthy Christmas from Downs Side Up

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.

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

Jojo Maman Bebe Xmas Catalogue: Models with Down's Syndrome

Jojo Maman Bebe's Facebook banner

Natty and Seb (M&S) in the Christmas Edition of the Jojo Maman Bebe catalogue

I still adore the outtakes!