Downs Side Up

Silent Sunday

Kicking off Learning Disability Week with a vlog about confidence and friendship

I was asked by the Foundation for People with Learning Disabilities to put together a designated blog post for them as part of Mencap's Learning Disability Week #LDWeek13 this year.

I was honoured, and set about thinking how best I could join in with their theme of planning for the future and safeguarding. At 6 years old, Natty's adult life seems far far away, so I decided to chat about the importance of self-help skills, and specifically making friends, which in turn boosts self confidence and self-esteem. Vital commodities for us all.

Armed with a new iMovie Phone App, I decided to try my hand at a vlog, incorporating an interview with Natty and some lovely photos. I warn you, I am very much an amateur, but I do hope you can find a few minutes to sit and enjoy our chat and then join in with the #LDWeek13 celebrations by using the hashtag on Twitter, posting to Mencap at Twitter and Facebook and adding your posts to the linky below.

Watch out for my equally suspect poetry skills on Wednesday, when my #superhero post for Mencap airs!

Jamaica, and other longhaul memories

Right now we're riding the painful, grumpy aftermath of 2 tonsillectomies. Cuddles, sofas, films, pain relief, ice lollies, more films and a smattering of crafts if we can muster enough energy to enthusiastically motivate the poorly soldiers.

Yesterday, to cheer ourselves up, we looked back over our holiday snaps from earlier in the summer. A reminder that we all need to grab the opportunity to create wonderful memories and store them up for later use whenever we can.

It's funny how travel has always been such a significant part of our lives. Daddy Downs Side Up travels a lot with work, and in the heady, romantic days of LBK (Life Before Kids as we affectionately refer to that time where you have no-one to please but yourself) I used to jet off with him for short breaks: New York (taking photos at the top of the Twin Towers), San Fransisco (wearing a bib to eat a giant plate of lobster), Hong Kong (buying cheap silk ties on the street corner at 1am), Paris (persuading the waiter to simply leave the desert trolley with us), you get the picture.

Then some holidays to far away places of choice; Malaysia and the Maldives, diving with turtles and exploring rainforests and staying up late and drinking cocktails whilst playing Scrabble (I know, I know) and plenty of siestas to catch up.

Before we started a family I always thought we would just continue to trot around the globe, our offspring becoming seasoned travellers and explorers.

So when Natty was born, I recall thinking, literally within the first few minutes of her life, as the initial heavy shock and grief settled over me, that we would never ever again even visit our local beach, let alone travel to long haul destinations.

What on earth put this ridiculous thought in my head I cannot tell you.
Perhaps the notion that people would always point and stare at us at us. That insensitive folk would make rude comments. That Natty wouldn't be 'allowed' to travel. Perhaps it was my brain's way of vocalising its fear that our lives were over, that we'd be forever under house arrest. Perhaps the travel connection stemmed from that Holland poem that was thrust at us straight away.

Either way, I couln't have been more wrong. And as soon as she was strong enough, we firmly resolved to change all that forever...

EUROPE
We first took the girls at around 1 and 3yrs to Menorca, a short hop, for just a week. An amazing thing happened, Natty's nose unblocked and her chest cleared, the weather was working miracles. Furthermore we noticed a sharp improvement in her cognitive abilities. It was as if the change of scene and temperature made her more alert, and she enjoyed taking everything in around her. The next year we tried Portugal.

INDIAN OCEAN
Then, a couple of months after Natty had her keyhole heart surgery and we have been given the all clear, we boarded a plane for the Indian Ocean Island of Mauritius. It felt as if a huge weight had been lifted from our shoulders, the worry and fear, we had carried for 2 years thinking we might lose her had been such a physical one. We had been buckling under, just biding our time, and now we felt free to live again.
We had the holiday of a lifetime, it bonded us all together as a family unit and I can honestly say that for the very first time since Natty's birth I realised that Down Syndrome wasn't going to define or limit us.
We found time to visit a DS charity while we were there, and were impressed by the services offered to families under one roof.

CARRIBBEAN
Since then we have made our family holidays top priority. We discovered that JAMAICA feels like a home from home. We've been back 3 times and the girls are always welcomed with open arms to collect beach glass, braid hair, tie dye Tshirts, swim until sunset and make new friends. Music, good food, warm seas and genuine people. For it's all about the people isn't it.

We visited a local school while we were there and the children were most intrigued by Natty and Mia. We joined in and sang songs and could have stayed for hours.

This year we went to ANTIGUA which had a quieter feel, but we were made to feel no less welcome.
We returned home with the same feeling that we had invested in our family and ourselves, having met some incredible people, rediscovered who we are and changed a few more perceptions of Down Syndrome around the globe.

With careful planning, there's no stopping us now. I might even feel brave enough for a spot of camping sometime soon, or a family friendly festival.

charlotteameliakids.tumblr.com

Some Top Tips for Travel with Children with a Disability
1) Make sure your destination is within driving/flying distance of healthcare facilities such as a clinic or hospital comparable to what you might find at home. I always like to plan for the worst case scenario.

2) Make sure you take out comprehensive travel insurance. Ours covers the cost of the entire holiday even if we check in at the departure airport and then decide not to go because Natty falls ill.

3) Always check with your doctors to make sure they are happy for your child to travel.

4) Take un-made-up antibiotics if your doctor will allow it, and every other medicine you might conceiveably need.

5) Give the airline plenty of notice of any special requirements.

6) Try to find an inclusive, welcoming resort/hotel/B&B if possible. You can often get a feel by asking a few questions and seeing what their response is, whether they seem as if they would take your family's differences in their stride or not. Some companies specialise in Family Holidays, such as Scott Dunn and Tots Too, and will be happy to discuss your needs and make recommendations based on that. some resorts will have special passes/access for children with disabilities, such as Disneyland.

7) Plan your journeys carefully. Think of them as a mini holiday in themselves and take time to pack everything you will need to get from A to B happily and without stress. I always pack as big a bag as I can that will fit comfortably in the overhead locker, such as a cabin suitcase. There's enough room for everything from spare clothes, more spare clothes, pyjamas, masses of tempting healthy snacks and treats, a basic medical kit, tiny fun toiletries and as many new, unplayed-with-before small toys, stickers, colouring books and so on as I can squeeze in it. My girls love a rag doll with plasters, comb, bandages, hairclips and so on.
It's also worth investing in noise-limiting children's headphones as they will actually fit, and your child might keep them on long enough to watch a whole film. Don't forget a sunhat, shades and sunscreen to pop on when you arrive if going somewhere hot.

8) A different routine/ climate might unsettle your child, only you will know what will suit them and what they can cope with. Natty used to meltdown at the feel of heat and sand mixed with sun cream. But with gentle reassurance and repeated exposure to it, she has got used to it. I guess it helps that we live near the beach too.

9) Keep a journal during your stay. This could be drawings, postcards or photos so that your child has a visual record of their holiday to show teachers and family on their return.

10) Enjoy, relax, make memories, take thousands of photos. Live, love, laugh.

H x

Live, love, laugh

#SilentSunday 11th August 2013

Downs Side Up meet The Futures Rosie

I could write for hours about what happened when the two divas met for the second time... but I'll let the pictures speak the words. I bring you Natty and Rosie:

Read The Futures Rosie blog here.

1.37am in a hospital quiet room...

A minor op.
Routine.
It went well.
'Text book' one might say.

Words that mask reality.

Today we brought our littlest soldier to have her tonsils and adenoids removed.

The teams were fabulous, accommodating of her needs. Learning Disability nurses smoothed the way, made sure she understood, put her first on the list, made sure the appointment wasn't changed. We felt safe in expert hands, but still tears flowed as she drifted calmly, unsuspectingly into the gas, whispering, 'I'm hungry...'

A flashback to her heart surgery, natural parental fear.
We kissed her and told her of our love for her, promising cake when she woke.

The hour of her surgery stretched ahead of us. We paced, spoke to family, listened to every sound and voice in the ward, waiting for news of her safe return to us.

'She's out and in recovery.' Bob caught the snippet as it passed our door.

Yes, it was our Natty. The relief is immense, no matter how minor or routine the op, the irrational fears that your mind fights, all centre on the anaesthetised time. The time when you are not in control, powerless, only able to trust others in whom you lay your child's life.

Natty woke, disorientated and feeling strange. She was distraught in a way I don't recall post heart op, but then we are 4 years down the line with a little girl who understands so much more and thinks so much more deeply.

We soothed. Morphine came to the rescue, and shortly she was eating soup demanding exactly who sat where and stroked her arm and watching Mamma Mia on a loop, to which she sang loudly (apologies to the rest of the ward).

This is how she feels when the morphine is working, but when it wears off and lesser painkillers are the baseline, she's struggling a bit.

Tonight has been hard for her. We are in High Dependency Unit to monitor her oxygen and breathing, surrounded by nurses who look vaguely familiar, who say they know us of old. Those who have been a crucial part of our journey so far, to whom we owe so much. The faceless medical angels whose lifework is supporting us all.

She has missed Daddy who has gone home to sleep and kiss her sister goodnight.

She is swollen, her face rounded, lips sore from the tubes. The catheter in her hand is bothering her. She's restless, fidgety, fussing over her latest syringe. She settled late, overtired after the day's events. Waking in the early hours for more pain relief.

But finally, after endless stroking and rocking and soothing she sleeps.

She is safe, she will be well.

But darn it tonsills, you packed a mighty punch...

And yes, I'm off to get some rest too now.

H, 2.33am x

You might also like to read about the emotions behind the operation here at Tonsil Op Cancelled at the Crack of Dawn.

Natty for Face of Kinder 2013

I know that ad inclusion is a very important part of what we campaign for here at Downs Side Up. Natty and a team of others across the UK have been getting their faces into catalogues, brochures, websites, films and commercials, showing the world a different kind of beauty, acting as role models for others and encouraging the the PR teams to look at representing every one of us in their marketing strategies. Read about the pioneers who are changing attitudes here.

I have to admit though that writing around to companies and attending castings was a very time consuming process, but happy in the knowledge that increasing numbers of companies were opening their modelling criteria to those with disabilities and others parents were forging ahead, I guess I relaxed the pressure a little. I also found myself caught up in other writing and media campaigns which took all my focus.

We decided not to go all the way to London for a recent Boden casting and were on holiday when Urban Angels needed someone for an ad, but we were excited to see our friend Kostas in the latest Co Op commercial. There is also a new model Julius hitting the headlines in Australia and a little boy Adam in Ireland is working for Marks and Spencer so it is happening.

But actually I am left wondering if companies really are employing a long term policy of inclusive advertising, or simply engaging in one offs for whatever reason...

So, I shall start looking around for more modelling opportunities for Natty, our model with Down Syndrome. Locally as far as possible, as it can be slotted into our day so easily that way, taking little away from school time. If everyone did a little bit here and there for a local tourist attraction or shop or company we could cover the country in a network of inclusive advertising.

For now we've entered Natty into the Face of Kinder 2013 competition. If you would like to vote for her you can do so here. (Vting has closed).

Just type Natty (there's only one) and follow the instructions. It takes around a minute. You can vote for as many children as you like, so enter your child too and we can all vote for each other's children.

So go on, dust off your keyboards, get voting and get writing to those companies!

Together we can make a difference and get disability into the media.