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

The Night Before Christmas - The classic that needs no explanation.
Slinki Malinki's Christmas Cracker - Wonderful rhymes from Slinki Malinki and the gang.
The Christmas Unicorn - A wistful tale of daydreams and friendship.
Jesus' Christmas Party - Giggle along to this humorous twist on the Nativity.
Christmas - If you love Miffy you will love this book, complete with card nativity scene to create.
The Jolly Christmas Postman - full of things to find and do. 
Father Christmas Needs a Wee - Brilliant for counting, and comes with a CD that all children find amusing. Bernard Cribbins reads Santa, and he needs a weeeeee.
The Empty Stocking - a tales of siblings, of being naughty and nice, and a moral about doing the right thing, this is the book that reduces me to tears of an evening.
How Santa Really Works - Great for the older kids who are asking questions... wonderfully scientific explanations that will keep them believing a little while longer.

What are your favourite books to share during the holidays? Books are the perfect way of spending time together, and of remembering what Christmas is all about, not expensive gifts and commercialism, but family and relaxation.

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. 

Thank you for your role in changing perceptions of Down’s syndrome and learning disabilities, and for believing in a world where everyone is of equal value, represented fairly and given a voice. Together those who have the condition are pulling together with parents, charities, teachers and medical professionals to educate, support, love, inspire and entertain one another. 

For us this year saw Bob taking on new projects, Mia decided to become a jazz pianist and developed a love for History. Natty grew a whole 4cm and changed the face of Sainsbury's back to school advertising and together we published our first book I Love You Natty.

We are excited to see where next year takes us all, but we feel sure that together we can make lasting change, open a few more doors and continue to remove stereotypes, fears and barriers.

With love to you all

Hayley, Bob, Mia and Natty
Downs Side Up

We invite you to add your festive and current posts to the linky below. Please visit one another and give each others' blogs some Christmas love. 

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. 

Winter ills: How do you encourage your child to take their medication?

How do you encourage your child to take their medicine?

Winter ills and the problem of getting vulnerable children to take their medication

Winter ills

Each year I hope and pray that we will get through the cold dark months without serious illness, without a visit to hospital, with less worry than the previous year. These grey hairs are sure mounting up!

I live in hope that one Winter there won't be any mad dashes to seek medical advice, wrapped in blankets during the wee small hours of the night. One Winter without bronchiolitis, croup or laryngitis, a burst ear drum or a febrile convulsion or worse, pneumonia would be simply wonderful. As Natty has grown the illnesses have become less frequent, but at least once each year she is felled, knocked sideways by some nasty or other. It leaves me on amber alert all season and wondering if a move to slightly warmer climes might be feasible.

Now don't get me wrong, I love the staff on our local paediatric ward. They are medical angels with golden wings.

But I'd rather not be worriedly sipping tea with them at 3 am when I could be wrapping gifts by the fire, baking mince pies with the girls or watching them join in carol concerts and plays with their classmates. Oh, and getting some sleep.

The reality is of course that the lead up to Christmas is a hairy mix of memory making, precious time spent together as a family, doing a bit too much but not wanting to miss out on the fun, trying to keep everyone safe, warm and well and juggling nursing poorly children and battling the germs and the lurgies when they come to visit.

Childhood ailments

This year it all began with tummy pains and vomit. 
Lots of vomit. 
Projectile vomit. 

I guess we are talking about Norovirus or similar, and it had already spread pretty quickly around many members of the school community.

We had just about finished washing all the bedding and various sets of orangey-stained pyjamas on a boil wash, when Natty's much anticipated 8th birthday arrived 48 hours later. She was out of the don't-go-near-any-children-for-two-days quarantine zone, but was still rather pale and tired and a little hot. We interwove the paracetamol and ibuprofen and our Elsa Princess soldiered on. She attended her 'Frozen ball'.

Celebrating being 8, despite the Winter ills

Birthday girl

For two hours Natty was happy. She crafted, mixed with her friends, sang and ate cake. The adrenaline and excitement carried her through. Moments were etched on her heart forever.

But on returning home she was too tired to open her friends' gifts, the afternoon had taken all her available resources. Her breathing began to rasp. So off we went to get expert advice.

Unexpected allergy

Our GP confirmed a mild chest infection and prescribed 'banana juice' or Amoxicillin as we call it in our house.

Two days later we were looking at swollen hot lumps on her skin, more vomit, more tummy pain, more fever and now a racing heart and a breathless floppy child who was very very grumpy indeed. This was not like Natty and this was beginning to terrify me. Were we dealing with heart failure? Was this some terrible virus that wasn't responding to antibiotics? 

My mind was fretting and thinking of all the possibilities. This was something I hadn't seen in our child before. And although we quickly become medical experts when we become special needs parents, it's still difficult to deal with the unexpected and the unknown. We know our children absolutely, but there is always a spanner waiting to be thrown into the works.

The GP wasn't 100% sure, but suspected an allergy to the penicillin.
She had never shown signs of this before, but apparently it can just come on at any time in our lives.
We immediately stopped the medicine and made another appointment to see him the next day, to check her progress.
See the NHS site for penicillin allergy facts here, including symptoms of anaphylaxis*.

Once off the offending substance our littlest one began to improve. Our poor darling missed her class nativity play where she ws due to play the part of an angel. She'd been learning her lines for weeks and I couldn't believe how very emotional I felt, knowing she wouldn't stand among her peers and deliver those lines we'd rehearsed so often. 

But I had to focus on the bigger picture, helping Natty get strong and well again, but that knowledge didn't stop the tears from falling freely that evening. I know that allergies can be very serious and I felt grateful that our doctor had spotted it swiftly. Watching our our little actress speak her first line in a play symbolic of our community's inclusion would have to wait for another time.

How do you encourage your child to take their medication?

And here is the very crux of the problem. The alternative to Amoxicillin that we were given is Clarythromycin. It is utterly vile. Having licked one tiny drop from my finger I understand how poisonously bitter it is. The taste lingers on and fills your mouth with the most disgusting aftertaste.

Now on the plus side Natty has learnt some new words like 'disgusting' and 'bitter'.
But very much on the down side she has gagged on the taste so much that she has made herself sick. She is now very reluctant to take the medicine as many children are. It's not just the taste that is off-putting. Many children hate the sensation of the medicine in their mouths and refuse point blank to co-operate.

Does your child hate taking their medicine? Is it a real struggle? What are your tips?
The wonderful Downs Side Up community rallied forth with their ideas today. Thank you for all your suggestions and here are just a few:

1  Ask for an alternative antibiotic. Keflex and Erythromycin were mentioned as possibilities, though not as effective for certain conditions. 

2  Invite your child to drink before and after taking the medicine to wash it down more quickly.

3  Use a syringe instead of a spoon as the medicine will touch less of the mouth before swallowed.

4  Give your child a mouthful of honey or maple syrup before the medicine. Now is not the time to worry about sugar levels and it will coat the tongue forming a taste barrier.

5  Brush your child's teeth afterwards to help take the taste away (and get rid of that sugar you used to bribe them).

6  Use a hand puppet to administer the medicine. The character could even tell a story to engage your child's assistance. "This magic potion will help you be strong and have super powers." or "every time you take a mouthful of this medicine a fairy is born.", whatever suits your child's imagination.

7  Encourage your child to close their eyes and hold their nose while swallowing the medicine. This makes it a less sensory experience.

8  Follow the medicine with something strong flavoured but not too sweet such as a dark chocolate drop to take the taste away. Some people recommend mixing with yoghurt but there are some who are of the opinion that dairy products will change the way the antibiotics is digested. Always consult your doctor.

* Penicillin allergy can cause anaphylaxis and exposure to the allergen a second time will cause an increase in the reaction. Make sure your child's medical notes are marked appropriately, teach them to say they are allergic if possible, and mark on their One Page Prifile or medical passport. You can buy wrist bands such as this, which you child can wear to tell the world about their dangerous allergy. 

Flemish Painting Features Angel with Down's Syndrome

This 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 the additional chromosome.

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

It's wonderful, and it shows that Trisomy 21 has been around for a very long time.

The 1515 Flemish painting, by an unknown artist, . . . shows an angel (next to Mary) and possibly one other figure, the shepherd in the centre of the background with the syndrome.

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.

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. 

Anti-bullying Week: Fighting the Statistics with Love

Last week was anti-bullying week 


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.