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.

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.

The Importance of Respite and True Friends

It's very easy to say...

I need some respite, a bit of time off, a break, a change, a rest...

We all have very different lives.  

Some of us work, some seek work, others choose to stay at home with young children. Very few parents of children with additional needs can afford extra help, some rely on nearby family to lend a hand. Some of us are lone parents, some lonely within relationships, others are fortunate to find themselves within supportive partnerships, team-tagging their way through the special needs jungle.

But what we all have in common, as parents of children with a disability, is that we need time out in order to recoup our energy levels and enthusiasm. We need regular pitstops in order to be better parents and carers. 

All unpaid carers know we need to nurture ourselves, but time for yourself is really difficult to actually factor in to your life for many reasons, often not least because you don't think you deserve it. Read why it is vital do press the pause button once in a while and have a look at our tips for doing so, in this post created in collaboration with Basubu Yoga Retreats, who know a thing or two about restoring the senses.

Being a special needs parent can be wonderful and exhausting in equal measure

Special Dentistry: Tops tips for teeth

When you have a child with additional needs, you know how important it is to take extra special care of their teeth. But sometimes that is easier said than done. 

The following post pulls together advice and resources from dentistry experts, and will hopefully ease some of the worry and make looking after your child's oral health easier to swallow.

We ask the experts for their special dentistry tips and resources

Special Care for Teeth

Natty was as cool as a cucumber about her milk teeth falling out, mostly excited about the shiny coin that the Tooth Fairy left in the pillow. Even on the occasions when the precious tooth got lost in transit between school and home, The Toothless Fairy visited regardless. 

But somewhere along the line there was a period of time when Natty didn't want to have her teeth brushed. She didn't care too much for the dentist, began to dislike the taste of certain tooth pastes and, much to my horror, needed a small superficial filling. I had to up my game.

The importance of developing self-esteem and confidence in children with a learning disability

Self-esteem is what leaves us feeling content with ourselves, makes us like what we are and take pride in what we do everyday. It makes us feel worthwhile and know that we contribute to the community around us. It allows us to feel valued and loved by those we know, and equips us to embark on and develop new and secure relationships. Self-esteem gives us the confidence to try our hand at new activities and stick at them when we stumble. 

Here I look at tips and resources to help boost your child's self-esteem.

Ways to help your child boost their self esteem and confidence

Natty and I had just finished our bedtime story and were having a chat about our day while enjoying a hug as she relaxed in her bed, wearing her favourite spotty pyjamas. 

“I love Mummy, I love Daddy, I love Mia, I love Natty”, she declared proudly. And in that moment, I knew what self-esteem really meant, and that hers was thankfully overflowing.

Specsavers KidsFit Disney range suitable for children with Down's syndrome #ad

Specsavers ambassador Natty loves her new KidsFit Disney glasses!

Goodie box from Specsavers

When Specsavers asked if I'd like to work with them* to spread the word to Downs Side Up readers about a new range of Disney KidsFit glasses made especially for children with small faces and low nose bridges such as many children with Down's syndrome, I jumped at the chance. 

I've always been a fan of our local Specsavers. Mia and I have have been regulars for years. But Natty has only just made the transition from specialist hospital eye appointments to mainstream opticians' eye tests and prescriptions and so is a fairly new customer.

Natty entertains with her famous eyebrow wiggle: 

From the outset Natty has been treated like a celebrity when she goes into the store, partly because she schmoozes, flatters and entertains the staff, and partly because last year she and her big sister Mia were awarded British Citizen Youth Award medals at the Palace of Westminster for their work towards education and inclusion. 
Low and behold the event was sponsored by Specsavers!

Mia and Natty receive their BCyA medals from Ashley Banjo

It was a day which I will never forget, one that made me immensely proud of both girls for all their achievements, but I think for them the fact that Ashley Banjo of Diversity fame, was presenting the awards and that the event involved mountains of cake and a tour of London in an open top red bus was the most important matter in hand.

Back to the Glasses! 

I was really delighted to learn that Specsavers have developed a range of glasses ideal for youngsters with Down's syndrome. The low set bridge on the glasses means that children are encouraged to look through the lens rather than peering over it. 

So often tailor-made ranges for our children can prove expensive or difficult to obtain, and with this KidsFit range available free with your child's NHS optical voucher it could represent a significant saving of time and money.

As you can see Natty was delighted to give the samples a try as soon as they arrived, even before I could take the stickers off the lenses! 

Natty models the new Specsavers KidsFit range #loveglasses

Then we popped in to have an eye test and choose 2 pairs for Natty. The whole team were very patient with her and made the eye test fun. Specsavers staff have a good understanding of visual acuity and specific eye conditions that children with Down's syndrome can experience, as well as putting an emphasis on ensuring that children's glasses are fashionable, practical and fit well.

Thumbs up for eye tests!

It's important for all children to have regular eye tests, not just to make sure that they have glasses fitted if necessary in order to see better for day to day tasks and school work, but also in order to pick up on any underlying medical conditions. 

Time to choose 

Natty's prescription is very mild and she often chooses not to wear her glasses, but they do help make her less tired when she's at school. And I secretly think they make her feel more studious and focussed!

Quite frankly she loved all of the vibrant and colourful glasses in the range, which make fun styles more accessible. She loved the Disney characters on the arms (and I liked that they were subtle enough to be stylish). 

Natty took choosing her glasses very seriously

And entertain the Specsavers staff

Not one to ever knowingly under-entertain a captive audience, Natty used the glasses as props for a full show of singing and dancing. After a few renditions of The Greatest Showman, she chose a pink Sleeping Beauty pair and a blue Cinderella pair, one for "bed time reading and the other for my school bag" she exclaimed. 

In her new specs, Natty sings This Is Me! #loveglasses

Designed to fit so they don't fall off #Kidsfit

Once they'd been ordered, we popped back in a week later to have them professionally fitted and checked. Then Natty was ready for action!

We'd love to thank Specsavers for catering for our children's needs so well, and hope that they extend the range in the future, perhaps designing age-appropriate and stylish glasses for older children, teens and adults next.

Susbstantial and stylish. Natty loves her KidsFit cinderella glasses.

The new glasses are certainly substantial enough to withstand Natty's rough and tumble lifestyle... I just wonder how long they will survive her Womble tendency to hide precious objects in strange places!


To find out more or view the full collection go to the Specsavers website here. 

* #AD We were sent vouchers for 2 pairs of glasses for Natty as well as a lovely Disney goodie bag and I was compensated for my time to write this review. 

Lip Warrior: A no-nonsense healing balm for cracked lips

Lip Warrior to the rescue for dry lips

Sore, chapped lips cause misery for many

This is the very first Winter of Natty's life during which I feel adequately armed to deal with her persistent dry, sore lips. It might sound like a minor irritation to many, but for those of us with loved ones whose lip area dries and cracks to the point where it bleeds, we understand the suffering that this condition can bring. 

And if this applies to you or your child, you'll know the cost and time involved in trying out every lip product on the market. Our bathroom shelf could double as a lip balm shop!

Many people struggle to manage chapped lips; those with eczema or psoriasis, those with additional needs who may favour mouth-breathing and be prone to chelitis, those who work outside in the elements and even people on certain medications or with other underlying medical conditions. 

And did you know that some perfumed or medicated remedies can even make the problem worse!

Necessity is the Mother of invention

I became so desperate to ease Natty's discomfort last Winter, that I asked a friend who creates natural products for skin conditions to put on her thinking cap and help me create a pleasantly fragranced, protective and healing balm. One that was free from nasties and one that Natty wouldn't simply rub or lick off after application. This salve had to have staying power.

Almost a year later, and lots and lots of trial and error (balms that were too thin, too thick, that curdled, ingredients that couldn't be ingested, those that heal too fast or are allergens and even a batch that smelt like a damp dog - YUK!), we have lovingly crafted something Natty is eager to use, and more importantly that works wonders. 

We've called it Lip Warrior and we are delighted to be able to offer it for sale here in our Etsy shop for £6.99! 

Used liberally in combination with some simple Lip Warrior tips for dry lips this all natural, un-lickable salve smells divine, protects and heals thanks to its base of lanolin!* 

All natural Lip Warrior contains protective lanolin and vitamin E

So, without further ado, my friend Sarah the Freelance Naturopath and I are really excited to announce (drum roll please...) the launch of Lip Warrior! 

We really hope it helps heal your hellish lips as well. 

Update: Since launching the feedback has been incredible. Folk are using the balm for peeling cuticles, chapped cheeks, dry heels and even to help lipstick stay put. Lips everywhere are loving Lip Warrior too!

ON SALE FOR £6.99

Lip Warrior's Top Tips for Sore Lips

• Avoid salty and citrus foods
• Keep hydrated by drinking plenty of fluids
• Cover your mouth with a scarf when out in the cold
• Don't rub or pick your lips
• Avoid any cosmetics, certain toothpastes or scented lip balms that irritate your skin (but do brush your teeth well and keep your mouth clean!)
• Chat to your doctor as cracked lips can be a sign of an underlying medical condition or that you might need to change your medication
• Carry your lip warrior everywhere and use it often! 

* 15ml Lip Warrior contains anhydrous lanolin (not suitable for those with a wool allergy), alkanet, calendula oil, pure grade vitamin E, vegetable glycerin and honey. Not suitable for vegans. Created lovingly in fresh batches in a kitchen that may contain all 14 allergens. Lip Warrior comes with the HerbMark quality of assurance. 

Hairdressing Tips for Kids with Special Needs

Does your child with special needs do all they can to avoid having their hair cut or brushed? Here are our top tips for hairdressing without the tears.

Let your child choose hair brushes, braids and bobbles

Mia has always loved having her hair brushed, cut, twirled, plaited, twizzled and filled with as many hairslides and bobbles as she can muster. Her need for girliness has always outweighed my hairdressing skills by far. I still couldn't do a French Plait if my life depended on it!

Tears, Tantrums and Tiaras: Avoiding Hairdressing

Natty couldn't be more different. With her it's always been full on war to get a brush anywhere near her head. From washing to combing and cutting and every stage in between, we've been met with a full on tantrum or tears or running and hiding in a corner. 

Bless Her Heart: Heart Surgery and Beyond

Reposted from 2013

This morning Natty had the first check-up with her cardiac consultant in an incredible 2 years.

That she felt confident enough to leave a gap of 2 years since last covering Natty's chest in jelly and staring silently and seriously at her heart's image beating on a screen whilst Natty initially wriggled then slowly settled to watch CBeebies on a TV on the ceiling, whilst I stroke her forehead as she lay on my chest, speaks volumes. 

But why did I feel so nervous last night? Why couldn't I sleep?

Nurture Yourself: Our MOT Self-Care Checklist

Every so often little reminders come along that it is so very important to look after ourselves.

Nurture yourself with our personal MOT checklist

Being a parent is tough and being a carer adds another layer of stress and tiredness but below are some simple tips for nurturing yourself. 

5 Ways to Encourage Your Child to Eat More Fruit and Veg

5 Ways to Encourage Your Child to Eat More Fruit and Veg

Encouraging children to eat a healthy diet and pack in their 5 a-day can sometimes be a struggle.  Little ones who are prone to constipation really benefit from several portions of fruit and veg plus plenty of water each day. But just how do you entice them to eat more?

5 Ways to encourage your child to eat more fruit and veg

1 Make a smoothie for breakfast 

Blitz a handful of berries with yoghurt or coconut milk for a refreshing start to the day. We've just invested in a smoothie blender to encourage us all to get a great start to the day.

2 Pop a fruit bar in their tuck or lunch box

Get Fruity with these natural fruit bars

Cereal bars can be enemies in disguise, often packed with salt and added sugar and of course may contain nuts, which are usually banned from school as they pose a danger to children with allergies. 

Natty has a Get Fruity bar every day and with nothing but fruit, oats and coconut oil in them. Naturally vegan friendly and gluten free, I can rest assured that there are no hidden nasties. She loves Juicy apricot, orange and ginger, and the Marvellous Mango flavours the best. You can choose from Radiant Raspberry, Moist Mixed Berry and more.

Locally made, they come in 6 juicy flavours and contain nothing but natural goodness. Natty really enjoys them too, which is a bonus. 

Packed with ingredients that can help little constipated tummies keep on the move. Just big enough to keep her going until lunch without spoiling her appetite as well.

Encourage your child to eat more fruit

3 Make fruit juice ice lollies

Great for when the weather warms up. We have a re-usable silicone mould that we can pour juice into and then store in the freezer. Ta da!

In Winter blitz any number of vegetable into soup, or leave thicker to make a pizza topping or pasta sauce.

4 Buy a bento box or funky cool bag

Grace at Eats Amazing has fabulous ideas for making healthy eating fun

Experiment with fun fruit faces and bring variety to what you offer your child. Pop over to the Eats Amazing blog for ways to make healthy eating fun. Creator Grace also has a shop packed with colourful accessories to turn tuck into tempting art. 

Or try a funky cool bag from Cool Blue Zebra. Our lovely friends at Special Needs Jungle sent us one to brighten our snacks, thank you x

5 Play games with fruit and veg

Try sorting activities, or set up your own makeshift grocery store. Get your child to help prepare meals too. 

Children are also more likely to eat fruit if they have grown it themselves. You can try anything from cress, to tomatoes in a tub, to canes of raspberries, depending on your available space.

Play sorting games with fruit and veg

Get Fruity bars are available from selected Waitrose stores, Ocado, Amazon and on the Get Fruity website.  You can follow their Facebook page here for more fruity fun. 

Get Fruity kindly sent us a box of bars to review. Thank you!

Get Rid of Mucus: 5 Easy Tricks To Beat Catarrh Naturally!

Please welcome dear friend and naturopath Sarah Murphy from Alchemilla Apothecary for today's snot-busting guest post.

5 Tips to beating mucus and catarrh naturally

You’ve turned the heating on and we're hurtling towards hats, wellies and gloves weather. Yep, we are in the midst of the cold season…. Here's how to help you child battle the mucus and catarrh.

World Down Sydrome Day 2014 - A Linky

March 21st is arguably the busiest time of year for any parent, charity worker, blogger, campaigner or  advocate who has, or has any connection with, someone who has Down's syndrome.

Yes, it's World Down Syndrome Day! 

#WDSD2014

The date is chosen to represent the 3 copies of chromosome 21 that individuals with the condition have. It's a day of celebration, education, of support and sharing information, as well as fundraising for the charities we hold dear and this year the focus is on HEALTH.

Coffee with Liz from DSRF UK

The beauty of living in Cornwall is that lots of people pop down here for their holidays during the summer. That has recently begun to include online contacts and friends and I've been delighted that they want to give up a portion of their holiday to meet up in real life.

Elizabeth Corcoran who heads the charity Down Syndrome Research Foundation UK and I met up in our favourite café, along with Daddy Downs Side Up, Mia and Natty on Saturday morning. We have chatted online, it was Elizabeth who put me forward to give evidence in Westminster re the current Disability Abortion Law but we had never met, as she gave her evidence online and by post.

Elizabeth has a younger brother who has Down's Syndrome and her charity aims to channel funds into medical research to improve the lives of those with T21. The sad fact is that the majority of research into DS currently focusses on the testing and screening process. Elizabeth and her team would like to see that balance changed in favour of studies into preventing dementia, improving cognitive function, maintaining a healthy heart and so on.

Well, Liz was one of those ladies it was so easy to get on with. We chatted away about current and future projects, hopes and fears, family and work, supporting each other, oh, and of course managed to fit in the obligatory funny face photos, instigated by Natty who immediately fell in love with her.