Support Marcus, Author of Black Day Book: The Monster Rock Band

One of our girls' favourite books of the year is Black Day: The monster Rock Band created by our dear friends Mardra and Marcus Sikora of Grown Ups and Downs.

Natty reviews Black Day Book by Marcus and Mardra Sikora

A Makaton Nativity Play that Includes all Children

Mum of Jacob and Primary School teacher Rebecca Thompson created this wonderful new Christmas resource a couple of years ago that would benefit all early years settings or SEN classrooms. It comes complete with Makaton symbols. 

This Season she launches a sequel, Gold Star Inn.

New Makaton nativity play

When my son, Jacob was about 14 months old our speech and language therapist recommended we started to use Makaton to help him to communicate.  Desperate to do anything that would help his development my husband and I enrolled on a two-day training course and our signing journey began.

The Precious Power of A Song: Depeche Mode

This weekend my little brother (aka Uncle Carl) secured two tickets for us to go and see the inimitable 80s band Depeche Mode during their Global Spirit Tour. 

This was a band we shared a love of as youngsters, a band we listened to throughout the teenage angst, a band we grew up to.

Depeche Mode music takes me back to when Natty was born

We Interview the Woman Behind the Camera: A World Without Down's?

 This very evening the 5th October at 9pm on BBC Two a ground-breaking new documentary co-written and presented by actor Sally Phillips airs. It's called A World Without Down's? and talented film-maker Clare Richards was the woman behind much of the filming and editing. Downs Side Up asked her a few questions.

Clare Richards was the woman behind the camera filming A World Without Downs?

The powerful piece looks at Down's syndrome screening programmes and asks some important ethical questions about our views on disability as a society. I was enormously proud to have been filmed whilst training medical professionals for the programme along with our daughter Natty. 

Key scientists and ethicists, as well as champions with Down's syndrome and their families, also feature in a work that will start important conversations everywhere. Never before has a programme asked the opinions of those with Down's syndrome on such an important topic either.

The country is in a media frenzy with Sally Phillips at the helm. Media interviews are like beacons of light flashing across the country as our community rallies. Here's my pennyworth on BBC Breakfast yesterday

But with all the focus on the protagonists in the film, rarely does anyone ask the film creator about their role in bringing such an important topic to our screens.

So I threw a few questions at Clare, and asked her what she's working on next and here's what she told us.


How were you selected to work on A World Without Down’s? What drew you to the subject?

I’m always interested in subjects where minority or alternative voices get a platform to express themselves more fully, so when I heard about this project I was naturally drawn to it.

You work alone at times. Tell us about the different roles you perform in creating a film such as this.

There’s always a big team in the background keeping a production moving forward in all directions, but with this project there was an awful lot to read and lots and lots of people to meet before we did anything – it’s complex, in fact I was continuingly researching the whole way through the process. 

I was also self-shooting the documentary, keeping in touch with the many contributors, as well as working to a schedule that had to co-ordinate with Sally’s very busy timetable and making sure that a mutli-layered subject was fairly discussed in a way that was going to be accessible to a broad audience.
Clare tells us about the making of BBC Two's A World Without Down's?

Tell us about an average day for a documentary maker.

There really is no average day – I could be anywhere, talking to anyone about anything. But it will usually involve lots of research to ensure you fully understand your subject matter, I needed to ensure that I could communicate the subject to the general public. So lots of reading, phone calls, meetings with experts and people involved in the subject matter and also to those who hold the subject close to their hearts.

The film features some very personal moments and a range of raw emotions from various people. How do you feel witnessing these? How do you ensure authentic emotions are expressed. Do you ever put the camera down and give your subjects a hug?

It’s always a real privilege to be a witness to sensitive situations where emotion is raw. I hope that I develop good relationships with people before we film anything emotional so that people can feel comfortable, or comfortable enough to be genuine when we do film. It’s often easy to spot when emotion isn’t real and if it is disingenuous it won’t tend to be used in the final programme. From years of experience I will sense when I’ve filmed enough so that I can give people space that they need or give them a hug.

Was it a straightforward process? How many hours of film, countries visited, nights away from home, extra takes etc 

It wasn’t straightforward at all! We filmed about 18 days with Sally in America, Iceland and the UK, which isn’t a lot of time, but the work that went into each day’s filming was quite considerable. Carl, the producer was constantly juggling information, schedules and relationships with a huge variety of people with lots of different opinions.

How did you begin to decide what made it into the final edit.

You look at everything and then start whittling it down, being mindful of the fact that you have to weave a narrative that takes people on a journey that is surprising, informative and entertaining, if possible!

What was your personal experience of Down’s syndrome when you were growing up? 

I didn’t have a huge amount, I didn’t go to school with anyone with Down’s and I didn’t know anyone outside school with Down’s either. However, my Dad worked for a charity that raises money for people with learning disabilities for 10 years. He organised the funding of a mini-bus for the local Down’s group in Somerset called Ups and Downs Southwest, which is run by Wendy O Carroll and he was always really struck by her son Oliver, who is a very successful photographer. The first film I made was called Disabled and Looking for Love, about dating and love for disabled people so I guess I’ve always been empathetic.

(Read the Downs Side up interview Focus on Oliver Hellowell here.) 

What did you learn from making the film, both professionally and about DS?

I learnt a great deal more about Down’s syndrome than I knew before, it really does feel like an outdated view of what Down’s syndrome prevails. I learnt a great deal more about bioethics and the science of genetics and that was fascinating too.

Are there any moments in the film that really stand out for you and what are you most proud of?

I’m proud of the sequence with Sally and Ollie on the Southbank because it feels very intimate. It was also important for the film that the viewers are able to witness Sally being a mother and I feel through this scene you truly see this and it’s really beautiful.

I’m proud of the fact that a lady that has terminated pregnancy felt able to contribute to the programme. It was an incredibly brave thing to do and I hope it helps other women like her feel able to talk about to their experiences so they’re less stigmatised.

I’m proud of the fact that I’ve been able to tackle a difficult, complex and emotional subject in a way that hopefully draws people in and makes them think and discuss.

Tell us about your other/future projects. 

I’ve just started on a project for BBC 2’s This World international current affairs documentary strand which will be following a British doctor with albinism as he investigates the persecution that Albinos experience in East Africa.

See more of Clare's work on her website. 

They're Not All Like Her You Know...

They’re Not All Like Her You Know…

No-one has ever once said to me that not all 12 year olds are like our eldest daughter.

She’s an ace at discus, makes a mean batch of shortbread, is a loyal and generous friend and is confident enough to deliver a speech to a room of student nurses.

Our eldest speaks to student learning disability nurses at Positive Choices 2015

She’s exceptional and unique in ways that make us brim with pride as most parents do  about their offspring. Other kids her age might have dropped through our schooling system, be struggling with addictions or exhibiting anti-social behaviour, others are victims of abuse or neglect, but no-one ever feels the need to tell me that ‘they’re not all like her’.

Individual differences
Now, our 12 year old has a younger sister. She has her own strengths that we are proud to celebrate. She’s hilariously funny with a dry wit that can dissolve a room into giggles in seconds. She can mimic and mime in a way that garners your full attention. She’s sensitive, a sort of litmus paper of others’ feelings and can break up a tense situation like the most celebrated of comedians.

Comedy timing is everything

She also has an extra chromosome. 
And for some reason this leads people to say, “Ah, but they’re not all like her you know.” They say it a lot. 

Doctors have said it. Teaching staff have said it. Friends have said it.

I wonder what is in their heads when this slides from their mouths. ‘They’ does not refer to all 9 year olds of course, but to kids with Down’s syndrome. 

‘They’, a sub set, a type that is expected to be a certain way, more alike each other than the rest of ‘us’ or even their own families. ‘They’ refers to a stereotype that our daughter has just challenged in the mind of the speaker by being herself. Something within has stirred, a deep fear has arisen, an uncomfortable ignorance of ‘them’.

And the ‘Ah, but…’, the lead-in that says that as many of the conventional milestones that our daughter is meeting in this world in which we are all expected to conform to standardised targets, there are those who share her condition that are not.

And the ‘Ah but…’ means that although our daughter is living her life to the full, the speaker thinks that perhaps others with more complex needs would not. Somewhere in their mind is a judgment about which lives are worth living. And which are not.

Last week the College of Obstetricians argued a case for offering screening for Down’s syndrome to all women with a costly new non-invasive prenatal test, or nipt.

The reasoning was not that all women should be given the best possible sets of information to make decisions that are right for them and their families, or even to make preparations for their baby’s arrival. The argument was that this blood test cost should be weighed against the financial cost of support throughout the life of a person with Down’s syndrome. It was being sold as a cost cutting exercise.

So now we come down to the crux of the matter. Maybe some people need more support than we do, perhaps with different ways of communicating from our own, of behaving. And suddenly then we have made a decision that their lives are not worth living, that they suffer, that they would be better off not here.

Undoubtedly there are parents of children with Down’s syndrome who struggle through a maze of battles for support. Who are at the end of their tether with worry, who cannot cope.

Yet when over 97% of siblings report being proud of a brother or sister with Down’s, 99% of adults with Down’s class themselves as content with their lives and 79% of parents report a more positive outlook on life since parenting a child with Down’s (Skotko 2011), we should perhaps focus on quality education and support networks for these families, rather than buying into the misapprehension that the world is a better place without the unique wonder of anyone with Down’s syndrome in it.

New Documentary
This is a subject that is due to be explored in a documentary fronted by actor and writer Sally Phillips this week. She looks at the ethical issues around the way antenatal screening is delivered, the language we use to describe disability and ponders the kind of world we all want to live in, and what we would stand to lose in A World Without Down’s?

And even before people have watched it, I can hear the ‘Ah, but they’re not all like her son…’ echoing around. Of course they aren't.

A World Without Down's?

Which brings me to Uncle Martin
This gentleman, now in his 50s, has greatly changed the outlook and life of his nephew, a dear friend of mine.

Born in the 60s, life was very different for those with a disability and most of Martin’s education came from his parents at home. They in turn would have received little outside help or guidance.

My friend told me that Uncle Martin does not boast any traditional qualifications, has never had a paid job or lived independently. He’s never featured in a documentary, book or advertising campaign. Uncle Martin has led a very different life to the one our daughter is leading.

Uncle Martin shows us the important things in life

But as a young child my friend was not aware of labels and can’t even remember when he realised that Uncle Martin indeed had Down’s syndrome, simply seeing a man who he enjoyed watching hours of The Dukes of Hazzard and Knight Rider with. They got the same enjoyment from these programmes and delighted in playing games together.

Many years later, following the death of his parents with whom he had always lived, a very special residential home was found for Uncle Martin. He flourished in the family-run, warm community. He has his own room and takes great pride in participating in community events when the home opens its doors to sell fruit and vegetables grown in their ever-expanding kitchen garden.

When my friend visits, now with his own family, he finds a man whose sight may be weakening, and whose legs give him discomfort, but who still has the most positive outlook on life.

It is now his young son who is learning much from Uncle Martin. He cannot imagine never having this important man in his life and knows not to judge others’ differences or abilities against his own.

Uncle Martin has been happy and included by all around him. He has taught them the values of gentleness and understanding. He is clearly loved, cherished and in no small way has broken down barriers in his own right.

Future Generation
Children and young people growing up with Down’s syndrome today undoubtedly have many more opportunities and no-one can say what Uncle Martin’s life might have been like with better healthcare and early educational intervention. In many ways it doesn’t matter.

They’ll always be others who are not like Uncle Martin or our daughter or anyone else with an extra chromosome. There’ll be those with more health issues, more challenging behavioural problems, more complex needs. There’ll be those with no healthcare issues at all, fluent speech and a string of GCSEs.

One thing we can be sure about is that we are all unique. 


A World Without Down’s? gives a balanced view of attitudes towards the condition as Sally shares her story. It calls for us to all to take a step back and see the unique qualities of each and every human being and, more importantly, it draws the medical and the social together. It does not dictate. There are no bad guys. It does not seek to remove choice, in fact the opposite is true.

My hope is that it will serve as a springboard to further collaboration, education, understanding and the support that we all need at different times in our lives. Already links have been forged between medical teams and the Down's syndrome community as a result and I am proud to have been asked to work with Oxford University obstetrics students as an Expert by Experience. The ripples are already being felt. 

What this programme and this discussion has cleared in my head though, is that perhaps when society seeks to remove what it sees as unproductive members of its group, it will lose precisely the element that can make it stronger.

One thing we can be sure about is that none of us are the same, and therein lies our collective strength. If you take away the one part that you think is superfluous to requirements, you may soon find that the whole is weaker.

If you have written a post discussing the themes of the documentary, please add to the linky below. All posts will be moderated and do not necessarily reflect the views of Downs Side Up.

Model Natty Strikes a Pose: Frugi Hannah Reversible Dress

You know that thing when you're a top fashion model, working toward inclusive advertising so that all your peers can see themselves represented in the media. Yes, that. 

It's hard work isn't it! All smiles and poses and fun, I can't just switch that on at the drop of a bright cotton sun hat you know.

It's even worse when your Mum is really busy and forgets that she is supposed to have taken a photo of you in a gorgeous new dress that one of the companies you represent has sent you. She'd promised them a review by all accounts and this snazzy Frugi frock has been on her pile of things to do for days apparently. News to me of course *eyes roll to the sky*.

So what does she do on review post deadline day? She puts you in it and makes you pose for the camera. Just like that, no warning. Right after your breakfast and just before brushing your teeth. Most inconvenient I say! She really should organise herself better...

Striking a pose in Frugi reversible dress

To make matters worse she had the nerve to make me take it off straight away and put on my boring school uniform. I wanted to wear the pony pocket dress to show my friends.

I mean, I ask you! I wanted to keep it on all day! She really should stop horsing around (get it?).

Natty G x
(Words imagined by Mummy G)

p.s. There's also a blue one with an owl. Twit Twoo!

This gorgeous Hannah Reversible Dress is made from soft organic cotton, with popper fastenings at the back of the neck for easy dressing. One side of the dress has a sweet Frugi character applique and the reverse has a cute embroidered pocket, two dresses rolled into one! It retails at £32.

Frugi Hannah reversible dress also available in 'Owl'

Head over to fellow #FrugiFamily member Globalmouse Travels for their review of the Lulu Jumper Dress.

Tips and Contacts for School Pupils with Down's Syndrome/SEN

It's that time of year when many of you are preparing your children for a new term at school.

Tips for school pupils with Down's syndrome

I think back to the time Natty came to the end of her pre-school years and remember the stress and worry, the form filling and meetings, all mixed together with pride that she was making this huge step for the first time. I remember a lot of tears and late nights and the invaluable support of many professionals.

Whether your child is starting at mainstream or special school, you will want to get through this process as smoothly as possible to ensure the right package of support for your child.
So here are a few tips and ideas that worked for us, as well as some invaluable support groups that you can consult for advice tailored to your child's needs, whatever their stage of schooling.