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!


#AD A Tale of Two Sisters: Just Strong Young Women

Inclusive Advertising




I so fervently believe in diversity and inclusion in advertising. 

We all need to see ourselves represented in the media, regardless of our ethnicity, gender, sexuality, genetic makeup or ability. 

Almost a decade ago Natty became one of the first models in the UK with a disability, working on a national Back to School campaign among other projects.


Natty, model with Down's syndrome


The news went global, and not just within our Down's syndrome community. Newspapers and TV shows were all discussing what shouldn't really have been hot news.


A time when inclusive advertising was big news

Since then, thankfully, many companies have followed suit. I am always particularly heartened when I see models of diversity adorning the front of beauty magazines or advertising makeup and sportswear... because why shouldn't they! Natty loves makeup and keeping active, just as much as her sister and her peers.


Just Strong Sisters

So I was particularly excited when Activewear brand Just Strong asked if we'd like to trial some of their products. Not only was this a chance to see Natty associated with a sportswear company, and boost the girls mental and physical wellbeing by encouraging them to get active together, but a way to show the world what strength can mean for each of us.

I have many role models in my life but my daughters rank among them the highest. Natty and her sister Mia couldn't be more different in personality and appearance, but their friendship and respect for each other is a pleasure to watch. Their bond is unbreakable and their strengths are varied.


Mia and Natty have a strong sisterly bond


And, just like beauty and success, we all have the power to be strong. Each of us of us as unique and glorious as the next.

We are all capable of embracing our perfect imperfections. We are all capable of finding confidence by celebrating our seemingly insignificant significant achievements. We are all capable of working on the natural physical and emotional strengths we have, whatever our abilities and needs. And we are all capable of supporting and bolstering others to do the same, accepting them for who they are and giving everyone an equitable chance to have a go.


Just Strong Young Women using sport to improve their wellbeing


Towers of Strength

There's petite Natty, professional poser, intuitive dancer, family arm wrestling champion, hilarious to the last, and with a cheeky twinkle in her eye. 


Strong and graceful Natty


Her strength comes with the bravery of facing medical interventions and surgeries, proudly telling anyone who'll listen that her 'heart was fixed,' when she was two years old. 

And it comes with in her determination to overcome challenges, working many times harder than her peers to learn everyday skills such as walking, reading, drinking and swimming. Never put off, Natty will find a way round obstacles, using her unique initiative. Before she could say 'I love you,' she'd sign 'You... Happy... Me...' So perfectly put, Natty.


Natty enjoys yoga to help her relax and settle her before bed


Then there's Mia, a fiercely protective big sister, published author, and young woman who is not afraid to stand up to bullies and use her voice to fight for justice and equality. This is someone who has experienced many difficulties in life, whose teenage years were blighted by divorce and a global pandemic, which stole many rites of passage from her, but whose strength comes in resilience, in learning to bend like a reed in the winds of change and in finding joy in her friendships, outings in her little car, beach swims and horse riding.




So thank you, thank you Just Strong, for including us in your campaign. 

We simply love the haul; the gorgeous hoodie (Mia hasn't stopped wearing it since it arrived and it's perfect for those chilly Cornish outdoor adventures), fabulous running leggings and dance T shirt. And the logo couldn't be more apt, and the quality is excellent and better still, it's reminded us that if 'You Believe You Can, You Will.'




If you know someone who's Just Strong, 







It's a Blogger's Life: Pause for Thought


Sarah Pylas who wrote Grenglish

A Blogger's Legacy

This week saw the passing of a supremely talented writer and much-adored and respected member of the blog community, Sarah Pylas. She was one of The Originals, a well-established influencer when I started out over a decade ago. 

Sarah's blog was called Grenglish, a beautifully honest account of life married to a Greek man, her husband Pan. Sarah's devotion to Pan and their son Zachy radiated from her work. I urge you to go and have a little read in her honour. 

Sarah joked that behind every Greek man there was a woman rolling her eyes... but the love between them was tangible. Sarah died surrounded by friends and family and was brave and hilarious to the end, Pan told her online family.

And that is what the blog world is, a family. And what an amazing legacy Sarah has left behind, not just the way she touched her fellow writers who she supported and showcased selflessly, but a warm and honest piece of work, a deep insight into her mind. Sarah left us young, but boy, did she packed a lot of life into her years! 


Sarah and others from the blog world at MADs Blog Awards


My Blog Journey

I paused for thought to reminisce about my own blog Downs Side Up, the way it started, how it evolved and the way blogging as an industry and form of writing has changed over the years and what a close-knit online community we are. We really are the privileged few and Sarah played a large part of that.

I recently had the pleasure of talking alongside Steph Curtis of Steph's Two Girls on this subject at BlogOn. The sacrifices had our families made, what had our words achieved and the friendships and lessons had we gained along the way? Because over a decade ago we were writing into unchartered territory. No-one had put their family stories out into the public sphere in quite such a way before and we inevitably made mistakes as we found our way, from oversharing to dealing with trolls.


Downs Side Up and Stephs Two Girls
discuss blogging tips at BlogOn


Blog/Family Life Balance

For me, the original motivation for my blog was to buy other new parents precious time bonding with their baby, by dispelling the myths and fear that surrounded the diagnosis of Down's syndrome for me when Natty was born. I wrote what I had needed to read in those early days, but soon found the unexpected benefit that the process of blogging was cathartic and allowed me to access support as well. 

My blog was organic, there was no plan, it just evolved and I wrote in a homely way about what was topical or going on in our lives at that time. But it did take over. It did eat into family time on occasion, despite always trying to strike a balance between creating change and 'putting ourselves out there.' 

And now, post-divorce, I am reworking my blog in order to monetise it without losing its message or my integrity, as that is the perfect work from-home-solution in a post-pandemic world. So now, more than ever as a single Mum, I need to ring fence my time with my girls, and organise my ways of working like never before. 


 

#AD This is where employee Apps such as Blink, as used by the NHS, can help streamline your workload, aid communication between colleagues and store vital resources all in one easy-to-access platform. 


The Highlights

So, the heady days of parent blogging may be over, where our self-hosted websites were newsworthy and our words won awards. We've all moved on and our words are being crafted elsewhere. Our cute toddlers are now teens who don't want to be photographed posing with gifted products or have their private lives discussed with the world. And that's as it should be. My blog is a more generic place now, filled with facts and resources rather than family anecdotes.

Blogs today may well be slick and professional, but it is important to look back on what we have achieved with our homespun websites. Here are just a few of the things Downs Side Up has enabled me to do alongside my fellow parent bloggers:


Model Natty meets Lorraine


  • Encouraging advertisers to use a diverse range of models.
  • Giving our opinions in the mainstream media.
  • Campaigning for a more inclusive society, for equitable healthcare and education.
  • Advising publishers on how they represent disability.
  • Publishing books and resources.
  • Giving TedX talks.
  • Having tea with the Queen.
  • Being awarded British Citizen Youth Awards for work towards a more inclusive society.
  • Raising huge amounts of money for charity.
  • Supporting other parents in the same boat and changing the narrative around disability.
  • Advising at parliamentary level. 
  • Delivering training to medics and teachers.
  • Writing for magazines, newspapers and other online platforms.


Oh, the places your blog will go!

Quality over Quantity

I know our friend Sarah always got this blog/life balance right, dipping occasionally into her blog more as a way of chatting authentically with others and having a break from her offline job than anything else, but always writing words of great wisdom when she did. 

And I thank her for being in our lives and always being so supportive of others' work. She truly was one of the few who helped give so many of us a leg up. Thank you Sarah. 


Preparing for Tonsillectomy the Fun Way

D Day. 

Or should I say T Day. 

Natty is having her tonsils +/- her adenoids removed.


Bye bye tonsils

Yes, I know it's routine, and my head also knows thousands of children have it done each year. I had it mine out when I was 4. My mum wasn't allowed to stay with me. I do remember a lot of ice-cream though, and my Grandma buying me a new red overnight case.