Dear Richard Hawkins, You are Wrong

It's been one of those weeks where a bigot with a large following and a loud microphone, makes public his ignorance of Down's syndrome. This time it was the turn of Richard Dawkins. The following piece was written through the night, shaking with anger and hurt. The following morning I received a request from Huffington Post for my thoughts. So, I sent in my night thoughts.  Here is what appeared. 

Richard Dawkins, atheist author, provocateur, scientist, you must by now be well aware of the furore over your comments yesterday.
Comments that it was 'immoral' to bring a baby with Down's syndrome into the world if you have a choice.
'Abort it and try again', was your advice because it is the 'civilised' thing to do as 'they are foetuses, diagnosed before they have human feelings.'
As I watched the Twitter debate unfurl, you continued that you would not recommend abortion for individuals with Autism, say, as they 'contribute' to society, for they are 'enhanced', which, in your view those with Trisomy 21 are not. You even went so far as to say children with Down's syndrome 'suffer'.
Now hold your horses just one moment Mr Dawkins. I think perhaps you are confusing non-essentialist, humanist thinking with a loss of humanity here.
You are so very wrong on every single count above that it would be eye-rollingly laughable if it weren't so hurtful and damaging. Adults with Down's syndrome are reading your outdated and bigoted views. Yes, they read, and have opinions and feelings, just like you.
What you are actually saying by stating that we have a moral obligation to eradicate them as foetuses, is that they are worth less than the rest of us. So before you go any further, I suggest that you stop and listen to someone who actually lives the reality you claim to speak on with authority.
As I write this piece, my children are making pancakes in the kitchen with their Dad. (If it weren't for you I would be relaxing with them.) They are squabbling over who gets the first one and I can hear them discussing whether they want sugar and lemon or maple syrup atop the treats. One is planning to make a loom band bracelet for a friend later, and the other has a puzzle set up on the table that she's working on. Later we'll be baking biscuits before the cousins descend for a fun-filled few days.
The snapshot shows that our household is like many up and down the land. And yes, one of our children has an extra chromosome. Yes, she has Down's syndrome. It's just a part of who she is, an important part, but it doesn't define her, and it certainly doesn't limit her. She absolutely does not 'suffer' from the condition, instead grabbing life with both hands, living every moment to its fullest, taking part in all the same activities as her elder sister.
Like you, before our youngest was born, I too believed in the fictitious model of learning disability that society has constructed throughout history. The words 'Down's syndrome' struck fear into my Mummy-to-be heart as medical professionals talked of the need for screening and my calculated 'risks' of having a child with the condition. I had only outdated stereotypes, glimpses into the lives of strangers many years ago in my mind's eye.
If, upon delivery of the 'bad news', amid sorries and sober faces, we were simply given the earliest available slot for a termination, as many parents are, we might well have joined the ranks of the 92% of those who find out who choose that route, thinking it the only option. Maybe it's time we stopped to ask ourselves why so many unquestioningly follow that path.
If our trusted consultant told us that our baby would 'suffer', we too might have thought that abortion was an early form of euthanasia. What we wouldn't have realised is that actually choice is being taken away from us all, the choice to decide whether to continue with a pregnancy or not, once given unbiased information. The choice not to opt for unnecessary screening in the first place. And for the record, thankfully we did not have an antenatal diagnosis and thus did not feel subjected to that kind of societal pressure. Increasingly many parents are rejecting screening at all, as the possibilities for those with Down's syndrome become common knowledge. The 92% figure does not represent all pregnancies with Down's syndrome therefore.
And here is where you make your biggest error Mr Dawkins, for this is not a religious/ atheist debate, this is not a clear cut stand off between pro-life and pro-abortion camps. This is about ordinary people making difficult ethical decisions based on the limited amount of knowledge they have at their disposal. Your comments only serve to further entrench the myths that surround Trisomy 21. You too have accepted and swallowed the lie, a lie that many of us work hard to replace with accurate narrative.
I can understand that you don't know the realities of Down's syndrome today, I understand that segregation was standard practice when you were growing up, and I truly pity the fact that you lack the enhanced extra dimension that our community benefits from by having children like my daughter at their core. But it is not too late for you to learn that inclusion is a two-way street.
Down's syndrome is natural, it has occurred since time began and we are all different, we all need support at different times and have our 'flaws', that is part of humanity and what makes society rich, what makes life interesting.
Our daughter is now seven and she has taught us so very much. She is an ambassador, a teacher, she makes us appreciate the details of life, learn in different ways. She intuitively watches out for the emotional needs of her classmates, always there for those who are upset, or the ones with a bumped knee. She is funny and bright and feisty. You see Mr Dawkins, this is someone's worth, this is what we put back. The only burden we have on our shoulders as parents is tackling the misinformed.
When she grows up I know she will follow in the footsteps of her role models, find a job, live independently, enjoy the company of friends, have a partner of her choosing, partake in hobbies, maybe learn to drive, take exams if she wants to go on to further education. Down's syndrome is not a severe disability as was once thought when you were a lad, it is simply a mild to moderate developmental delay.
I do feel sorry for you. While you wade through a sea of negativity and tick off the number of followers you have upset today, I will be listening to the laughter of four children as we build a den in the garden, happy in the knowledge that when they reach your age they will be fluent in the language of difference and inclusion.
Please Mr Dawkins, don't use your public platform and your Twitter megaphone to whip up controversy. I beg you to look a little deeper and realise the responsibility that you hold, that one with your influence should not take lightly. I'm not certain if these recent comments were carefully planned to upset and enrage or whether they were an error of judgment on your part but your lack of understanding is as great a disability as any, particularly in one who should be old and wiser enough to know better.

But thank you giving us the opportunity to show you just how much our friends and loved ones with Down's syndrome enhance our lives. We wouldn't change them for the world.

Dear Richard Hawkins, You Are Wrong

An I Love You Natty Book Signing to Remember

We'd never experienced a book signing. 

Well not from the nervous-that-no-one-will-turn-up angle anyway.

I Love You Natty book signing

We'd queued up with our copy of books for respected authors to sign once or twice before. But they were experts, they belonged in book shops scribbling their signatures into pages.

Today was our turn, our turn to sit by a table full of I Love You Natty: A Sibling's Introduction To Down's Syndrome while people came and scrutinised it, and we had no idea what to expect.

Last night as I tried to prepare by working out what we would all wear and gathering props for the table, I read an article by an accomplished author on signings. He said that if you meet one person and chat about your book at a signing in a local store then the event is a success. It's about meeting people and not about selling books. 

Wise advice I thought.

I then saw a poster on Pinterest that said;

"If I inspire just one person with my book, 
if I change just one life, then my life will be complete."

That is my motivation exactly. I nodded at the screen.

And after reading these two things I decided that it didn't matter if we just chatted to one person today and that person didn't buy our book but went home with a changed perception of Down's syndrome. That was the aim.

We arrived early, with bucket loads of chromosome-shaped jelly beans, a box of books and Mia's favourite teddy Huggy, who makes an appearance in the book. Natty and Daddy and our screenwriter frend Peter Cadwell joined us later.

And from there the next 3 hours were a blur. 

A wonderful happy, emotional blur of chatting to families on holiday, local families, regulars in the shop, staff, parents and classmates and those who kept dropping by for another handful of jelly beans (I will respect the anonymity of those members of staff who are particularly partial to fruity confectionary!)

At one point there was an inspirational Mum who runs a Down's syndrome support group up country, and couple with a grown up son with DS, a new local Mum and a friend who had made a huge effort to bring her son who has other disabilities that make town a tricky place to be. And we all chatted and hugged and took photos at once and simply knew on a deep level that we understood each other's lives somehow. Waterstones began to feel like the venue for an old school reunion even though most didn't know each other.

I Love You Natty book signing

Mia and Natty signed books, pen got on posh frocks and perhaps one too many jelly beans were consumed, but nobody cared. For this was a book signing Downs Side Up style.

And I realised that book shops are just as Meg Ryan describes in You've Got Mail. They are community hubs, so much more than simply sellers of words on paper. They provide a place where regulars congregate for coffee and buy a new dream to take them away from their own lives for a few hours at a time. They are welcoming and inclusive. They feel safe.

One lady who the staff knew by name, described how the team there had helped get her through bereavement when her husband passed away. They actually cared about her well-being. 

And yes, there were folk who scrutinised our precious work and turn up their noses and put it down and walked away, those who tutted because we were taking up too much floor space. But that is a levelling experience, we all need to know exactly how books are greeted by Everyone.

And so to our local Waterstones, I cannot thank you enough for believing in our little book on what many would consider a niche topic. For creating window displays and mobiles and putting the book in pride of place. Thank you for suggesting the signing and giving us the confidence to go through with it. We have learnt so very much today.

We're home tired and with aching cheeks from smiling so much. And no, we didn't eat all the jelly beans, we'll save them for another book signing of I Love You Natty. We are another step closer to covering our self-publishing costs and being able to donate books to where they are needed most, and just as importantly we have come home with a renewed sense of being a part of a global team, who are there for us as much as we try to be there for others.

Summer Holiday Solutions for SEN Families

For most of us that blank sheet of Summer time leads to a mixture of relief that our children are ours exclusively for the next few weeks, excitement at all the memory-making to be done, and not a little anxiety as to how we are going to fill each day, survive the meltdowns and find respite or affordable childcare if we need it.  

I certainly don't have all the answers, but here are a few tips to give you ideas and ease your sanity.

This is Elijah: a Mum's Journey with Down's syndrome

Today's #TeamT21 monthly blog round-up kicks off with a beautiful, honest and inspiring guest post from Elijah's mum. So much of what she says will resonate with you, from her early shock, to recognising just how great the changes that parenthood brings about in us all are. 

The bigot I have feared meeting

On the day our youngest daughter came into our world I saw you in my mind's eye.
I saw the bitterness etched on your face, I felt your stares, I knew the ignorance in your heart.

You were the reason I thought we would never go out, the barrier I feared would keep us hidden away from view. The negativity that would sap my confidence and zest for life.

As the weeks and months became years, I began to think you didn't exist, that you were a figment of my early shock on this parenting path. I thought perhaps that you were merely a ghost of prejudices past, one long since shut away and forgotten.

Not one single encounter on our 7 year journey has come close to your description.

Sit up straight with SHOFT: tiny piece of back pain innovation

I like PR peeps, but I couldn't eat a whole one... 

Since Natty was a wriggly toddler I have suffered from lower back pain. I do now have regular maintenance physiotherapy, try to go to yoga classes when I can and wear a supportive pelvic brace for strenuous activity such as gardening. 

Down's: One Mum's Thoughts on a Word that has the Power to Divide

Meet Nathan Bessell, accomplished actor who has Down's syndrome, star of play written for him called Up Down Boy.

If you haven't seen it, you should. 

It was a turning point in my understanding, and in all 
honesty, my acceptance of Down's syndrome in my life. It is honest, brutally so. It addresses the deepest fears we have as parents and celebrates the most wonderful, unique qualities of Nathan's character Matty.

Happy Birthday Prince George: A Right Royal Frugi Gift

It's a time for celebration!

Bonny Prince George is one!
Frugi have been given the Queens award for being thoroughly ethical and fabulous and making scrummy clothes and being lovely employers!

And we are part of a very lucky little bunch of folk to be sent a gift to mark these events!

(Shouldn't it be the other way round Frugi, shouldn't we be sending YOU a gift...?)

Although our girls are too big to shoehorn into the beautiful soft organic cotton limited edition T shirt, we eagerly and excitedly accepted it. It arrived in a beautiful box, wrapped in tissue and accompanied by a signed certificate proving it's rare authenticity. 

#TeamT21 Linky

It's Friday folks!

Time to dust off an old blog post you'd like to reach a few more readers, or show us a new shining nugget of your writing.