The Blues, Views and Downs Side Up News

I realise that there's been a little radio silence of late. I won't apologise because I'm certain that you aren't sitting waiting for the latest instalments from team Downs Side Up, but here are some of the events that have filled our time of late.


Downs Side Up newsletter


Life hurtles on, commissioned articles for others (apologies due for those that are late) are increasing, a teen and tween need more attention (who knew!), EHCP plans take research and time (and bucket loads of chocolate), I've taken on a school Trustee post which is quite a steep learning curve too. 

There have been trips, travel and a house full of friends. Natty spent SATs week at home having dancing, swimming and music lessons and we've spent a lot of time desensitising her ready for a routine blood test, by way of play therapy.  

Add to all of this a world that feels like a confusing mess at the moment and I'm sure I'm not the only one feeling my energies sapped. Our thoughts are with all those affected by recent events in out cities, and we cling to the hope that we can all pull together moving forward.

And so it was that I realised that I hadn't even looked at my blog for weeks. I found 23 unfinished blog posts sitting in my draft folder. Each one is a corker I promise 😉, but they'll have to wait. I might never get around to finishing them, and they'll drop off the bottom of the list of things to do when they cease to become relevant, but no-one will ever be any the wiser.

I pondered. How about a newsletter-style round-up of some of the highlights of the last couple of months? It's cheating I know, but quick and easy, so here we go...


Digital Detox

We tried Airbnb for the first time and spent some relaxing time in the warmth of southern Spain.
The girls loved the out of season swims in their new wetsuits and everyone tried new tastes and experiences. We switched off our phones and got out the board games too!


Spanish sights



Wetsuits swims





City break!

Mia and Sally Phillips son Luke were interviewed by BBC Radio 4 for the Listening Project. They talked about life with a sibling who has Down's syndrome and I have a feeling that flatulance might have been mentioned/heard too. We'll keep you posted when you can it airs.

Then we excitedly dashed across London and watched Sally film an episode of QI. Mia was hugely excited to shake Alan Davies' hand, but of course was too cool to ask for a pic, hence the unimpressed expression next to a poster.


Radio 4 studio


In the Green Room for QI





We met Grandma and had some multi generational fun whilst in the city too. If you ever get a chance to take a 'more mature lady' to Madame Tussaud's, I highly recommend the 4D film and The Voice experiences. Mum's reaction was priceless! Worth every penny!

Madame Tussaud's Mum and daughter time



Grandma as The voice judge at Madame Tussaud's




Serial Finalist!

I attended the UK Blog Awards for the second year running. Downs Side Up was a finalist in the Health and Social Care section which is a huge honour! 

I came back to Cornwall with 2 awards.... not for us, but one for Coombe Mill and the other for Eco Fluffy Mama. So proud of you both!
For my part I am just so very happy for Downs Side Up to be considered again this year. 


Collecting Coombe Mill's award at the UK Blog Awards


Magazine Feature

We were honoured to have hosted the Blogosphere Magazine team at home for a photo shoot to be included in their Summer edition of the quarterly publication. Chasing children and chickens, dogs and husbands around the home making sure everyone stayed clean, fed, watered and wearing something appropriate/not clashing was hard work, but enormous fun. The issue is due to be revealed this week.


Louise Pentland is on the cover of the Summer edition of
Blogosphere Magazine which also features Downs Side Up



Podcasters Unite


I was honoured to take part in the Sue Atkins Parenting Show last week, where she invited me to talk about the joys and challenges of bringing up a child with Down's syndrome. We also talk about sources of support and the cathartic power of writing. You can listen in here and subscribe for future programmes.

And the tireless and resourceful Tim Liew recorded the 50th episode of the Meet the Parents Podcast to which I am a (very) occasional contributor (sorry Tim). Listen here as we all talk about what inspires us to blog, our original motivations and where we are heading. I give a shout out to Fermented Foodie, My Two Mums, Just Bring the Chocolate, Red Ted Art, Her Melness Speaks and Wally Mummy as just a handful of the blogs I like to dip into when I feel like a change.


Meet the Professionals

I was honoured to be invited to speak to a local group of learning disability nurses and two groups of SENCOs recently. In exchange for sharing our story and explaining just how much their services have helped our family over the years, I learnt so much from them in return, and gained a sense of relief that such a safety net exists around our family.


Sharing our story with SENCOs


Reviews

I reviewed an episode of the Police documentary The Met which dealt with the sensitive subject of supporting a victim who has Down's syndrome in the wake of a sexual assault. Read our interview with filmmaker Clare Richards The Met Tackles Tricky Taboo here on why she chose to include the story in the series.


The Met features the story of a young woman with Down's syndrome after her assault



Awards for Changing Hearts and Minds


Mulit-award winning A World Without Down's

And just in... the biggest news of all is that BBC Two documentary created with Dragonfly TV, A World Without Down's? which we were proud to feature in, was awarded not one, but TWO Sandford St Martin's Awards last night. One as voted for by the Radio Times Readers and the other for best ethics TV programme.

Sally Phillips, who co-wrote and fronted the programme, said that prizes were never the reason for creating it, but that it was wonderful to have the hard work of the team recognised as it came at quite a high personal cost. 


First TV award!

Judges stated that the documentary, which looks at the way antenatal screening is implemented and the possible consequences for the Down's syndrome community as well as asking what kind of society we want to live in, had a lasting impact on them and changed their way of thinking about the condition.

And that is all we ever hope for: changing the perceptions of down's syndrome, gently and from within hearts. 





BBC Series The Met Tackles Tricky Taboo

Trigger warning: In a month where every one of us has praised and thanked the emergency services for their selfless bravery when helping others and keeping us safe and politicians have debated funding and resources for these vital services ahead of the general election #GE2017, all eyes are on gritty BBC series The Met, which provides a behind the scenes look at life for London's police force.

The Met tackles a sensitive subject this week as they support
a woman with Down's syndrome 

Every so often such a fly on the wall documentary highlights a painful issue, one that unites the public in disgust. Our collective humanity is strengthened by our revulsion towards those that harm others, and nothing ignites the nation’s emotions further than witnessing wrongdoing against the vulnerable. When the topic is abuse of children for example, we gather together in our resolve to protect them, to throw a safety net around them, to keep a watchful eye out for those who wish to cause them harm.
 “ Unless we are outraged, unless we know uncomfortable truths, how can we rail against them, prevent them from ever happening again.”

Yet there are many other equally vulnerable members of our society that need the same level of support, protection and vigilance. Abuse of the elderly, the sick and those with a learning disability is commonplace, yet it is perhaps less visible, not discussed as often, or perhaps people simply don’t want to believe it’s happening.

The Met this week dares to bring a sickening crime out into the open as it follows their rape unit Sapphire as they investigate the assault of a young woman who has Down’s syndrome.

As with any taboo subject, it is very uncomfortable viewing.
It highlights the vulnerabilities of adults with a learning disability living independently as well as showing up where additional support is needed to enable them to live the lives they choose, portrays the pressures and constraints on our incredible emergency forces and is living proof of how specialist support is needed to counsel and gain evidence from victims with communication difficulties. However Jolene, the woman featured, and her family were determined to have their story heard in order to bring about change for others.

I spoke to filmmaker Clare Richards this week to ask her what special measures she took when making such a sensitive piece for television. (You can read our interview with Clare who filmed A World Without Down's here.)
 
Clare Richards filmed The Met episode that includes the Sapphire Unit


Why do you feel stories like Jolene’s to be such a vital part of the Police series?

“I worked on the first series of The Met and one of the units that we weren’t able to work with was Sapphire, the rape unit. For me it was important to include these crimes because they are as serious as murder. The victims have to live with the ordeal and the humiliation for the rest of their lives. These are very difficult and sensitive crimes for the detectives to deal with too.  Rape is under-reported and although conviction rates are going up, they are still low. I hoped that including Jolene’s story other women would feel able to come forward.

When the second series came around Sapphire was approached again and this time we were given access to work with detectives and their teams who were happy to be filmed as cases came in. I was on call with DC Dave Fall when he picked up Jolene’s case. “


How do you go about filming these stories?

"We film in teams of two with small cameras and no lights and record as things happen. It’s called observational filmmaking which means we keep out of the way. We film as the detectives investigate but we can’t always film everything or things happen that we can’t be there for so we work with the police to pick up interviews if there are in any gaps."


What safeguards do you put in place when working with victims like Jolene and her family?

“When filming highly sensitive cases such as these our approach is to film the detective work but not approach the victims until it’s appropriate and only if such a moment arises. We can only broadcast the case with the consent of the victim, who may remain anonymous if they choose, and only if there is a guilty verdict. In this casewe gained consent to film and the perpetrator was found guilty.

The Met approached Jolene, her mum and support worker early on to let them know we had been filming and to ask their permission for us to carry on and if she wanted, to film her interactions with the police.

Jolene wanted to film from the very beginning and has been unwavering in her commitment to her case being broadcast ever since. We have consented and re-consented at every stage of the process and the Met have independently gone through this process with her as well.”


How important is it to get these stories right?  

“I recently made the documentary A World Without Down’s Syndrome with Sally Phillips for BBC2 and felt I fully understand what Down’s syndrome means and what bringing up a child with the condition involves, as well as the sensitivities the Down’s syndrome community face.

The whole process of getting this story on air took months of consideration and deliberation and we knew we had to take the process of filming it step by step.


What positive outcomes arose from the programme in your eyes?

“Jolene and her family really did get something positive out of filming. She was totally unfazed by the camera was proud to show me her home that she was so keen to get back into after the case was complete. In many ways being a part of the programme helped her work through what had happened, and her family felt it gave her something positive to focus on. In their opinion something good came out of a situation that had been very distressing for all concerned.  

If we want to live in a more tolerant, inclusive society then we mustn’t be afraid to show and talk about the most taboo areas within it.  I genuinely feel it will help provide better support for the most vulnerable.”

 *****



For me watching tonight’s episode of The Met raised a lot of emotions. They ranged from fear, to anger and frustration, I wondered if victims with a learning disability needed a different approach to questioning altogether, but overwhelmingly it left me with a resolve to continue working with others to create better support networks for those valuable members of our communities that need a little extra help.

Jolene has lived independently for years because she chooses to. She's more streetwise and london-savvy than I am. There are systems put in place by the local council and by her family to make sure she is protected.Yet her story shows the cruel and unpredictable challenges that life throws us. 

Kindness and compassion goes a long way to enable everyone to live safely and as independently as they wish, that and a belief in their capabilities with the right support. The programme highlighted that neighbours look out for each other, they do care for one another. It showed that we all rely on the tireless work of the police to keep us safe, and that they too need better support, resources and knowledge in order to protect us all in an equitable way.

So in many ways the bravery to create a film, and to be featured in that film, talking about a story that taps into our deepest fears is important, because these narratives have the power to change outcomes for the better for others. To waves one's right to anonymity is a big decision, but Jolene and her family felt is far outweighed the risks of featuring publicly.

It takes resilience and a belief in the best possible outcomes to do that. 



If you have been affected by the topics raised in the programme, visit the BBC support page here.

The Down's Syndrome Association have produced a leafltet called Staying Safe from Sexual Abuse.

You might be interested to also read our post Tackling Disablist Hate Crimein conjunction with Victim Support



Give Your Child a Fruit Juice Boost

As with all children, I'm keen that Natty gets a good balanced diet. A weakened immunity and frequent constipation, however, mean that I have to pay particular attention to keeping her hydrated and supplying her with her recommended daily dose of vitamins and between 5 (and more ideally 10) portions of fruit and vegetables a day.

There are many benefits to a daily #FruitJuiceBoost

Encouraging a child to eat more fruit and veg can sometimes be tricky and requires some sneakiness on your part. Try blending veggies into pizza sauce or packing them finely-chopped into soups, as well as making artistic creations with fruit. You might also consider playing counting or sorting games with fruit and veg.

Super Gifts for the Senses

You'd be surprised how often people ask for my advice about what kind of present they should buy for a child with special needs. 

Birthdays and Christmas only come around but once a year and it's important to make your gift one that will light up a child's eyes and be used frequently, whilst aiding their development in a fun and gentle way. 


Find a present that will delight, educate and develop the senses

Let's Celebrate World Down Syndrome Day 2017

Let's Celebrate World Down Syndrome Day 2017!


Mia and Natty celebrate World Down Syndrome Day 
with funky socks to represent chromosomes


The 21st day of the 3rd month sees World Down Syndrome Day - the date 21/3 representing 3 copies of chromosome 21 which leads to the common condition.

Our 6 Savvy Travel Spending Tips

The moment we were told that Natalia has Down's syndrome has been well documented on this blog, but one of the very first muddled thoughts that I remember running through my head was that we would never travel again... 

I can't tell you what my confused reasoning was, but what surprises me is that so many other parents of children with SEND say exactly the same.

The world is your oyster!

Go Henry Pocket Money App Teaches Independence

Like many children with a learning disability, Natty has very little concept of the value of money. She knows she can buy cake, a piece of fruit of a new dress with money, but so often it is me that buys it for her or gives her the change to hand over. She loves shopping mind you, even if it still means trying to hitch a ride in the trolley.

Go Henry is a new way to learn about money

In terms of saving pocket money or doing chores, we could do a lot more to encourage her understanding of money and develop her independence.

Fellow blogger and Mum of a young man with Down's syndrome Alice Hassell first told me about Go Henry, an online banking system with an app that helps children budget, save and spend. Go Henry have even won an award for Best Online Pocket Money system, so I decided to give it a try.