Sleep Strategies for Children who have Down's Syndrome

Any sleep-deprived parent will tell you how debilitating that all-consuming exhaustion is. The brain fog, irritability, lack of concentration and a complete obsession with getting a few hours uninterrupted kip under your belt, is a completely natural part of parenting. 

But you expect/hope/pray it will end after a few months.

Sleep hygiene is important for everyone

Up to 25% of all children have a sleep problem at some time (Mindell and Owens, 2003)

But for many parents of children with additional needs this pattern of broken sleep can last for years, or indefinitely. And of course the children themselves are suffering from disturbed sleep too, which has an impact on physical wellbeing and cognition.

Simple Random Acts of Kindness: A book giveaway

Simple random acts of kindness

365 Days of Calm, Happy and Kind by Becky Goddard-Hill

365 Days of Kind is a new activity, affirmation, and quote book for children by wellbeing author, psychotherapist and dear friend Becky Goddard-Hill, who you can also find blogging at Emotionally Healthy Kids. 

It is colourful, fun and packed with inspiration which it delivers in tiny, bite-sized chunks each day of the year.

This beautiful little hard back book with colourful page marker ribbon is the perfect size to stuff in a stocking or give as a gift to a child or young person.  

It has just been published alongside 365 days of Happy and 365 days of Calm. These books are packed with quotes, affirmations, and activities to encourage and inspire kids each and every day.

Each week is themed and begins with an activity related to the theme, followed by inspiring quotes and affirmations to say out loud on each following day. 

Author Becky Goddard-Hill

Random act of kindness ideas 

Here are the random acts of kindness activity ideas from the book that you might like to do with your children. Social and emotional learning works best when it is part of each day rather than just occasionally. A daily dose of kindness makes life nicer for everyone.

A random act of kindness is an unexpected surprise - 

an act of kindness for no other reason than to be kind. 

They are often done for strangers, 

but you can also do them for people you know. 

Here are some ideas: 

• Leave a thank you note above your post box or on your dustbin
• Make a Be Kind poster and display it in your window
• Make a playlist for your parents of all their favourite songs
• Make wildflower seed bombs
• Email your sports coach and tell them what they mean to you
• Wash your family or a neighours car
• Make and take a parcel to a food bank
• Write to your MP about something that could be better in your area
• Leave a little heart made of pebbles on your path
• Make a simple bird feeder
• Ask your local nursing home if someone might like a letter
• Make everyone’s bed for them
• Draw a picture for someone you miss
• Start a dinner time conversation telling everyone your favourite thing about them
• Send a thank you message to your teacher
• Help empty the dishwasher
• Find some positive and happy quotes to put in your sibling's lunch box
• Start a food box collection for a food bank

 

Which one will you do today? 

If we all do one random act of kindness daily, 

we might just set the world in the right direction.” 

– Martin Kornfeld

365 days of kind is out now! 

 
365 days of Calm, Kind, and Happy book tour 

To follow the rest of the 365 days book tour and see more extracts from the books take a look at the following blogs:

29 /9 We’re Going on an Adventure www.goingonanadventure.co.uk

30/9 Thrifty Mum thriftymum.com

01/10 Downs Side Up www.downssideup.com

2/10 Emma and 3 www.emmaand3.com

3/10 Mummy Mummy Mum  www.mummymummymum.com

4/10 Rainy Day Mum  www.rainydaymum.co.uk

5/10 What the Red Head Said www.whattheredheadsaid.com

6/10 Growing Family  www.growingfamily.co.uk

To be in with a chance to win a copy of ALL THREE 365 books, 

click the Rafflecopter giveaway and enter with your email address below ↓

Behind Bathroom Doors

So much of what makes us human goes on behind bathroom doors

Not just a room with a loo, but one with a view; a bird's eye view to the primal experiences that make us human as we visit many times each day.

Within those wipe-clean walls we spend hours pondering life's junctions and milestones, prepping for hot dates, rehearsing our job interviews. 

We cry over ended loves, hormone-induced spots on the face or our self-perceived perfect imperfections. 

It's a teenage sanctuary, a place to hide, pluck, prune, tear your hair out. 

Or spew out and flush away your frustrations. 

Then it's time to draw careful lines in the sand and move on.

The bathroom is a place to prepare for the day, wash the work shift from hell down the plughole or bathe in a warm afterglow. 

A retreat, a treat, a hideaway, a rare place of privacy in the hustle of households and life.

It's a room where babies are made. 

And where babies are lost. 

And where anxious would-be parents check and re-check which of those paths awaits.

And then in the same grief space, now hope-filled, babies are birthed, beautifully. 

And they are bathed by hands that love. 

Small, individual differences are found in that place where we are as nature intended. 

A freckle... a curl... an extra chromosome... 

The bathroom becomes a place of joyous splashing and benchmarks growth across the sleep blurred years. It becomes a classroom where little wins of independence are clapped by eager audiences. 

Later, we rush through theses familiar spaces of a school morning, grabbing a hairbrush and an odd sock, shouting reminders of 'teeth' as we hurry. Hurry, hurry up and go. And go one day they will.

But bathrooms can be a place of quiet, shameful dread. Doors shut and cornered, gritted-jawed hoarse whispered threats, swear of absolute destruction. Those tile clad walls alone holding dark, fearful promises of the ends of days.

And those days do end. 

And new bathrooms are found, and those you share them with changes. And they are so much more than a fresh lick of paint. And they become the calm, safe sanctuaries that they always promised to be. 

And you are once again swaddled in towelling hugs.

Life with Special Needs: A Bedroom Fit for a Teen

We've moved house recently and Natty had some very strong ideas about her bedroom decor - one cherry pink wall it is then! 

Moving house can be fun!

It never will be a perfect Insta-ready room I can tell you. Her habit of hiding small objects in purses which then get hoarded in multiple handbags will ensure of that...

But just as every teen has their own ideas about decor, and their room layout will be determined by their physical and cognitive needs as well as being led by the space you have available, there are a few tips and tricks you can use to make their lives easier and more comfortable.

Natty's room is quite cosy to say the least and that has meant I've needed to be creative in order to help her organise herself. So here are a few hacks I've learnt along the way.

Label Items

We have an labelled underwear drawer, a sock drawer and a pyjama drawer. These can have small stickers with an easy read font and/or symbol, or you can laminate card and blu tac it on. It's also a great idea to label objects such as the door and window depending on your teen's needs. 

Baskets Work

Natty and her sister Mia have multiple baskets which are stored inn and on top of the wardrobe. Each one contains everything needed for a particular activity, say dance or gym class. Another contains sun hats, glasses and sun screen and yet another all the swim kit. This make getting ready to go out much easier. 

Make Clever Use of Space

You can use the space under ottoman beds* or in the drawers of divan beds* to store items that aren't wanted on a daily basis and keep them tidily out of sight.

If storage isn't a problem, then another option is a truckle bed, which has a second mattress tucked underneath for when friends come for sleepovers. Inexpensive shelving can house books, games and puzzles and again these can be labelled.

Desk Area

If your teen has homework to do, they might need a desk with a reading lamp. This can double up for doing art, puzzles or as a dressing table for getting ready. 

Create a Visual Timetable

A visual timetable can feature the morning or bedtime routine broken down into achievable steps, or show the weekly timetable of activities that your teen enjoys. Visual timetables help foster independence and life skills and can even set out the steps for chores such as changing bedding. 

Get the Height Right

Coat hooks can be great for hanging uniform or an outfit ready for the next day as this provides a visual cue for what's happening. But it's no good having a hook on the back of your door at full height if you are petite in stature. So look at your teen's room through their eyes when planning and if they are small, fix shelves and hooks within their reach.

Let Them Choose

Provide options for your teen to choose from so that they can personalise their space and have ownership of the project. Simple cosy touches such as new cushions, a duvet set, rug, lamp shade or poster can really personalise a space.

Showcase Their Collections

Perhaps your teen has a collection of trains or dinosaurs or books, or as in Natty's case, tiaras. They might not be your idea of ornaments but they are precious to them. So display them on a shelf or desktop display unit. Items such as drawings, certificates or old records can be popped into cheap frames and hung on the walls.  

Family Tree

Family photos can be slotted into over door hanging pouches or displayed in frames. This is a way for your teen to cherish special memories or milestones in their lives. 

Get Sensory

Your child might like their room to be quiet, in which case you can use soft furnishings or pin fabric to the ceiling to muffle sound. Equally they might enjoy a sound system on which to blare out Little Mix on a loop. 

Mix and colours textures together to provide sensory interest. Pick different fabrics, faux furs and fluffy throws. 

You can bring aromatherapy into the room safely with a natural essential oil diffuser or by planting aromatic herbs in pots. 

Your teen might find a weighted blanket helps to calm them and aid sleep. They might also enjoy a memory foam pillow for support and some youngsters like a couple of extra pillows packed around them for comfort.

Make your teens bedroom a calm place to unwind

Sleep Hygiene

If your teen has trouble sleeping, it's a good idea to keep their bedroom a calm place. Eliminating tablets and phones before bed, lets them relax and helps their brain switch off for a good night. Read our Sleep Strategies post here. 

So, each room will be as individual as our teens themselves, and they are going to want to spend a lot of time in them, so why not make them as comfortable and functional as possible. 

* This post includes collaborative links.

SEND in the Experts Podcast: Downs Side Up interviewed

Georgina Durrant interviews me for her Twinkl SEND in the Experts podcast

Powerful Podcast

It was a huge privilege to be interviewed recently for the cutting edge Twinkl SEND in the Experts podcast, hosted by author, teacher and The SEN Resources Blog host Georgina Durrant. 

You can listen here as we chat about Natty's journey through education, debate mainstream and specialist school placements, discuss what inclusion really means, unpick what constitutes equitable education and healthcare and signpost best practice for educators and medics alike.

"A lot of parents have fought very hard for our children to have access to mainstream school over the years. And I think there is an unspoken... perhaps... feeling that we are letting the side down if we put our children in specialist setting. It's such a personal decision and it is whatever is in the child's best interest"

 

Downs Side Up chat to Twinkl about life with Down's syndrome

Twinkl Magazine

You can read our interview with Lucy Carmen for Twinkl magazine on World Down Syndrome Day here. I talk about what Natty has taught me over the years and how I have reassessed how I define success. 

You can buy Georgina's book 100 Ways Your Child Can Learn Through Play here.

You, Me and No.3 by the Sea: Natty and Olly's Special Friendship

A Road Less Travelled

One common experience that most parents of a baby with Down's syndrome recount is wanting to know what their entire lives hold for them while they are still a babe in arms. I was no exception, trying to envisage whether infant Natalia would get a job, have friends, marry or live independently, and all within the first few hours of her life.

I worried too whether she would ever experience a holiday or even visit our local Cornish beaches again. That all seems ridiculous now, Natty being a beach babe par excellence!

Natty's friendships are very precious to her

This just doesn't seem to happen when your newborn doesn't have an extra chromosome, and I guess it's all part of the natural adjustments we are making in our minds as we adapt to unexpected news, learn to distinguish outdated stereotype and myth from here-and-now fact and set off on the slightly different than imagined journey we suddenly find ourselves on.

It's the secret gem of a road trip that no-one wants to take, but when you do, you're so glad you swapped the high speed autobahn for it.

And it is this scenic, if occasionally bumpy route that Natty has led us on for a more leisurely trip, and one filled with wonderful scenery, fresh sea air, hilarious and often impromptu pitstops and the very best travelling companions anyone could wish to meet along the way.

Travelling Companions for Life

The friends we have met along the way are friends for life

Natty met Olly about 6 years ago when his Mum Sally Phillips was creating her award-winning documentary A World Without Downs. Olly is a dashingly handsome young man a couple of years her senior. He's witty, amusing, caring and shares her love of acting out Mamma Mia and taking silly selfies. He tells her she's beautiful, and loves her just the way she is. 

And just like Natty, Olly has Down's syndrome. 

Red carpet: Olly is dashing, fun and caring

I have watched their friendship unfold with envy, for Natty and Olly bring an honesty to the relationship table that the rest of us would do well to adopt. After meeting Natty for the first time, Olly drew a beautiful picture of the house he hoped they would one day call home together: and he labelled it No.3 by the Sea. 

No hiding his feelings until a socially acceptable time scale had passed, or playing cool mind games.... he just told her what he felt.

Natty and Olly in selfie heaven

Nowadays, their phone calls start with an exchange of 'I love and I miss yous', headlining phrases that most of us squeeze in just before hanging up at the tail end of our conversations. 

Olly carries Natty if her legs are tired, provides a shoulder for her to rest on when she is tired and is super protective of his smaller friend. The duo adore making each other giggle with funny stories or reciting lists of the daftest words they know. They love getting dressed up in their own flamboyant way, and there is never a hint of embarrassment if Natty chooses a tiara or Olly an umbrella hat. 

Both are incredible gift givers too; picking out fun badges, temporary tattoos, lovely cards or pieces of jewellery they know the other will love.

Proud and protective of our closest friends

They are too young to be in a romantic relationship, and both seem clear that they are just friends. But both are in love with the idea of being in love and all the trappings that come with it. Olly's Mum and I secretly dream of a time in the future when perhaps they can live together with other friends as independently as possible with our support.

Friends for Life

One thing is for sure, Olly is the longest-standing and closest friend Natty has and around whom she has a certain ease. And somehow when you have a learning disability those special friendships are even rarer and more precious. They need nurturing and a little support from the adults around.

So who knows, perhaps one day, Natty and Olly will cement their love and begin writing their own real life romantic comedy musical. 

They might seal their relationship with a kiss and vintage rings (or something one of them has fashioned by hand with wire, sea glass and a dollop of love) in front of a group of tiara-wearing friends cheering them on, before heading home to No.3 by the Sea for bottomless bowls of raspberry ripple ice cream, twirly swirly dancing, fancy dress karaoke and hours in a selfie booth packed with beach-themed props and tropical inflatables. 

What more, I wonder, could any of us wish for... 💖

True love is having the space to express yourself

*This is a collaborative post.

Teacher Gifts: To thank you for helping me shine

 #AD Spoiler alert - look away now if you are Natty's teacher!

It's time to start thinking about teacher gifts for the end of the Summer term

Not Home School Heaven

I'm not sure about you, but since the endless stretched-out days of home schooling during the Covid lockdowns, where time stood still, we all lived on banana bread, snacks and short walks, and where our calendars hung empty on the kitchen wall, I've found that we are cramming our lives full of more fun than ever now that the global pandemic has eased.

My home school teaching skills were a bit under par...

Summer's A-Coming

And as a consequence there only seems to be a blink of an eye between each school holiday and the half terms, and the sudden realisation that The Summer Holidays are just over the brow of the hill has hit me squarely between the eyes.

Cue, planning fun and inexpensive activities to entertain and delight Natty, meet ups with old friends, juggling childcare, custody and work commitments, all whilst keeping her interested in a bit of cleverly disguised school work.

Teacher Gifts: Thank you for helping me shine

But the end of term also means thanking Natty's teacher and classroom assistants. They have worked extra hard this year, having to devise new ways of working through a pandemic and then helping youngsters re-settle into school life whilst supporting their challenged mental health and guiding them through missed academic ground (I hate the term ''catching up').

And I think more than ever, I appreciate what teaching staff do, especially after having found home schooling so very, very difficult, despite having once been a 'real' teacher. (Although, in my defence, professional teachers aren't doing a second job whilst teaching 2 different year groups, rustling up lunch and whipping a hoover around the classroom in which they also live...)

Personalised teacher gifts with inspiring slogans from Gift Delivery UK

Great Teacher Gift Ideas

With pennies tight for most of us and the cost of living rising, showing your appreciation to your or your child's teacher needn't be expensive. As a former teacher myself, some of my most treasured end of year gifts were either homemade or inexpensive practical gifts. Try to keep them small and light if possible, just in case your teacher cycles or catches the bus to work! 

And remember, it's the thought that counts.

You could try giving them:

• a small packet of homemade shortbread, cookies or fudge
• a handcrafted thank you card or painting
• a personalised coffee mug, pencil case, coaster or tote bag teacher gift from Gift Delivery UK*
• a pack of useful stationary, such as coloured pens for marking, Sharpies, board markers or even post-it notes
• a DIY bathbomb
• a jar of nice coffee, hot chocolate or box of tea
• a homegrown plant or flowers. This could be something you have grown from seed or a cutting, a herb plant or a little tomato sapling. Even a pretty bunch of wild flowers tied with string make a colourful offering.

Natty chose a ceramic coffee mug for her teacher,
which reads 'thank you for making me shine'*

Time to Shine

*Natty was allowed to choose a teacher gift in exchange for writing a review. She loves this re-usable double wall ceramic travel mug with a soft silicone lid. She chose it because it's big enough to hold all the tea that her teacher drinks every morning. She was able to ask for his name on it and it reads 'thank you for helping me shine', because he has certainly done that this year.

We hope you also have fun finding ways to thank the teacher that has brought sunshine to your school world this year and helped you sparkle. It's time to shine!