Hearing of a medical condition or disability is usually a great shock, and goes against what we were expecting.

I often laugh at my pre-Mummy naivety, a time when I thought a shelf full of maternity books and expensive pregnancy vitamins would ensure a healthy, typically developing child.

A time when I didn’t have the sense to wait and see what our babies’ talents, tastes and needs would be, instead I tried to imagine their lives mapped out ahead of them even before they’d taken their first breath.

I suppose we all do it; ponder which school and clubs they’ll attend, even think ahead to fantasy weddings.

We imagine they’ll take after one or other parent, and only the wise simply wait to meet that new person and love them for exactly who they are.

I wasn’t one of the wise, and when Down’s syndrome was identified a few hours after Natty was born, I went into deep physical shock, imagined our lives were over and questioned whether I even had the skills to be her Mum.

As the months passed and she melted our hearts, I think a kind of denial took over.

I became obsessed with researching therapies, early intervention and support, maybe in the hope of making the extra chromosome fade, or perhaps trying to see into our futures.

It was when Natty was about three years old that I realised she was turning into a ‘project’, the target of way too many SALT and physio activities.

And although I wish I could turn back the clock and see her simply as our beautiful daughter rather than her condition in those days, I am grateful that I took that moment in time to give myself a good talking-to.

I had to love Natty unconditionally and get to know every aspect of her, and Trisomy 21 was just one.

I had to realise that although learning to be as independent as possible was a priority, success at school was never going to be her be all and end all. It was more important that she felt fulfilled and secure, enjoyed the company of friends, made choices about what food and music she liked.

Together we have all learnt to appreciate each girl for their uniqueness.

Ways to let you child know that they are valued:

– Have fun together as a family, sing, get messy and be silly. It shouldn’t all be serious, despite inevitable worries and times of stress.

– Teach your child life skills as early as you can. Having even simple household chores such as sorting laundry or feeding a pet makes them feel useful and valued and helps towards their future independence.

– Show your child that they are loved exactly as they are and tell them often. Write a little note or draw them a picture.

– Set achievable realistic goals that will encourage them to develop, and boost their self-esteem.

– Celebrate successes, however small, and praise your child for each new step. Tell everyone how proud of them you are.

– Finding an online forum or another parent who has a child with a similar condition makes you realise that you are not alone, and you can swap useful tips.

– Try not to let your child hear you being negative about service providers, medical teams or financial worries. By saving such niggles for when your child is asleep or an online chat you will prevent them from feeling like an inconvenience or worse still, a burden.

– Learn what your child’s individual differences are. How do they learn best, what triggers their anxieties and what kind of rewards do they enjoy most? Once you understand what makes them tick you can make minor adjustments to the way you do things in order to work with them.

– Try not to wrap your child in cotton wool. It’s easier said than done, and as a natural worrier I have to work hard at letting Natty take small calculated risks, but it’s the only way to learn about the world and feel included.

I will never be able to eliminate all the struggles we face for Natty throughout her life, but coming to terms with a chromosome is no longer one of them.

In fact she absolutely wouldn’t be ‘our Natty’ without it.

For me, Summer is all about finding ways to have fun with family, entertain the children and prevent them from squabbling/hurting themselves, whilst keeping my stress levels in check and my negotiation skills sharp.

I haven’t been 100% successful on all counts the past few weeks and much (medicinal) chocolate has been consumed.

It is so easy to focus solely on the constant tale-telling or the broken iPad, the lost teddy or constant meltdowns.

We become frustrated with the changeable weather, the cost of ice-cream, the juggling of responsibilities.

But when you step back and think, what changes can you identify in your child after the long break from formal education?

How have they developed over the Summer and has that benefited you too?

Maybe if they’re starting or changing school, there will be a tangible difference in their attitude, a kind of growing into the next phase as new uniform is proudly tried on, and you work on transition books or One Page Profiles in readiness.

Perhaps you have consciously worked on a new skill, such as toileting or another developmental milestone like swimming or learning to ride a bike.

That takes energy and effort of gargantuan proportions whatever the outcome.

But for Natty and Mia, the changes were more unexpected and subtle. As ever, we were all surprised by how much they have grown.

The hand-drawn chart on the kitchen wall pays graphic testament to the power of fresh air and exercise.

But more than that they have pushed their comfort zones. And mine.

Joining kids clubs where the young enthusiastic leaders seemed more like (highly trained) older siblings than adults in charge, they were treated to activities that they previously said they didn’t want to try.

To be brutally honest, activities that left me pacing with nerves until they were over: windsurfing, surfing, horse-riding, kayaking, coasteering and even scuba diving!

“We learning nothing new

from playing it safe. “

Sharon Paley

Now I distinctly remember signing a scuba permission form, and it handing over muttering the words, “See how Natty goes but I’m not keen on her doing it, what if she forgets to breath under water.”

And right there I was setting limits on my child who has Down’s syndrome.

The condition was first and foremost in my mind, despite all my campaigning to stop others committing the same offence.

I was not thinking of the inquisitive, confident child, keen to try something different along with all her new friends. The small calculated risk was overwhelming me.

And little had I realised that Mia needs encouragement and confidence to try daunting new activities as well. Being neuro-typical and physically athletic, it’s easy to forget that she too needs support.

They did it.

There was squealing and happy faces and they both stood a little straighter afterwards, so proud of themselves.

And they gained a little twinkle in their eyes and we celebrated that, rang grandma to tell her, pinned photos to the fridge, wrote about it in our journals.

And I, in turn, learnt to trust others a little more and let go of the girls, let them soar.

And it needn’t have been exciting physical activities, it could have been allowing your child to get covered in mud, or splashed by the sea, or letting them make choices about clothing or food you might not have envisaged.

Sadly, evidence suggests that people with disabilities often have the elements of risk and choice removed from their lives.

So do something new that makes you all grow as a family.

As Learning Disability expert Sharon Paley says, “We learn nothing new from playing it safe.”

That, dear reader is my definition of experiential learning.

World Down Syndrome Day sits within an awareness week on 21st March (symbolising the 3rd copy of chromosome 21 that is present in people with the condition).

Families and support groups, schools and workplaces choose to wear bright, funky socks to symbolise that we are all colourful and unique.

Others fundraise for local support such as speech therapy and early interventions for children, and the media is filled with stories that are at once ordinary and marvelous.

Bloggers and charities swap updated information as well as giving practical advice and support, and however we view awareness days or choose to spend them, we are agreed that what we are aiming for is for acceptance and equity for all.

This year’s theme is My Voice, My Community which features speeches from self-advocates around the globe.

In many ways these advocates are positively re-writing the narrative that surrounds Down’s syndrome. Their voices count.

I suppose that what I want most on World Down Syndrome Day is for society to look at each person and see them as unique individuals.

Not a set of stereotypes, a list of medical conditions or worse still co-morbidities, and not a one size fits all cookie cutter image of a type of person.

Our daughter Natty is funny and comedic, cheeky and stubborn, clever and gentle, her personality fills a room as soon as she arrives. But you have to meet her to know that.

You have to get past your preconceptions.

Sadly before most people get to meet someone with Down’s syndrome, if they ever do, they have to battle through a set of outdated myths that surround the condition.

Key Facts

So Firefly have helped create an infographic especially for World Down Syndrome Day 2017 in order to foster understanding, which you can see here..

– There are more than 4 million people living with the condition worldwide.

– Down’s syndrome is not a disease and it is not contagious.

– Down’s syndrome was first described by John Langdon Down in 1866.

– The most common form of Down’s syndrome is Trisomy 21, which is a chance occurrence.

– Rarer forms are Translocation and Mosaic Down’s syndrome, which can be genetic.

– Around 2 babies are born with Down’s syndrome in the UK each day.

– The use of the apostrophe in Down(‘s) depends on where you live in the world. Both are correct.

– Down’s syndrome is just one small part of a person’s identity. They are fully rounded individuals who experience emotions, mood, likes and dislikes just like everyone else.

– People with Down’s syndrome are not a burden. They do not suffer.

– 99% of people with Down’s syndrome report being content with their lives.

– 79% of parents say their outlook on life has improved since the arrival of their child with Down’s syndrome.

– 94% of siblings report being proud of their brother or sister with the condition.

– Children with Down’s syndrome can be educated in mainstream school, special schools or at home.

– The average life expectancy of a person with Down’s syndrome in the UK is around 65 years, with many living into their 70s.

– Many adults with Down’s syndrome lead independent lives with support, have jobs, homes and friendships and can marry if they wish.

So, this World Down Syndrome Day, lets move beyond the statistics, open our hearts and minds, and listen to the voices of the individuals who count: those who have Down’s syndrome.

There are so many special needs blogs these days.

These niche sites were scarce 5 years ago, out of sight and out of mind, but thankfully they are multiplying and providing support not only for others, but a cathartic release for their authors.

Blogging has brought me so much joy, excitement and a safety net of support, as well as true friends.

But there have been negative moments.

Here are some of the hurdles that can throw you off course.

Comparison with others – It’s easy to end up comparing your writing, your lifestyle, yourself or your child’s condition or progress to others.

You, your family and your blog are unique, so accept and celebrate that.

Pity and/or inspiration – This can be a very fine line to tread for many and you have to balance being honest and truthful and campaigning for better support whilst creating a welcoming space on your blog for others to visit time and again.

I think it’s important that readers don’t feel sorry for my child, or think her inspirational for doing ordinary everyday things, that would be when it all becomes patronising.

Privacy vs advocacy – There is increasing criticism of parents over-sharing information about their children with disabilities without their informed consent.

Our blogs, after all, will be a digital tattoo for the rest of their lives and this is worth bearing in mind.

My blog has certainly become less personal as the children have got older, other bloggers choose to remain anonymous.

But Downs Side Up has always been a place to showcase the voice of others with Down’s syndrome too.

I think having a child with a learning disability means that we often become their advocates and without our blogs they would still be hidden and forgotten.

Their voices must be heard.

Trolling – The internet, social media seem to encourage a kind of sport where it is acceptable to write horrendous things to vulnerable people that you would never say to them in real life.

Like most bloggers we’ve had our fair share of trolls, some which needed police attention, and also criticism from within our community.

There’s no denying that this hurts, however many times you experience it.

Losing your way – Comparison to others, following the latest meme, competing for votes for awards, over-monetising your blog and filling it with reviews or simply accepting to help every single charity that ask you to get on board with a campaign, can all contribute to writers losing sight of why they started blogging in the first place.

As you should always pause before hitting publish, always pause before you write.

Your blog is your own space and it can quickly become hijacked.

Sometimes a blog break helps bring back the focus and reminds you of the original motivations and why your readers started following you in the first place.

It helps you find peace with your blog and maintain its authenticity.

So while I can no longer keep up with the sea of SEND blogs, each one as unique as its author, it is really heartening and important to know that they are there, and that they are making a difference and forming a safety net around us all.

So, keep writing, blog for yourself, your families, your sanity and make your voices heard.

They are completely motivated by a desire to create change for their families and others, in a way that paid writers cannot match.

It’s cathartic – the most common reason to start a blog is to be able to express yourself.

As one writer put it, blogging is a cheap form of therapy or counselling for many.

So often we find ourselves writing into the evening, tears plopping onto our keyboards, and working through the trickier emotions we so often face and somehow we ‘blog through it’, as if seeing the words on the page unscrambles what is in our heads and hearts.

Sharing information – Some parents share resources and tips on their blogs, others use the online space as a kind of diary to provide a running commentary with friends and family when their child is ill.

This reduces the need to keep repeating themselves and the blog acts as a hub of information.

It can also be a way of explaining difficult situations to loved ones when a face to face conversation might prove impossible.

Support and community – When I began my blog I thought I would be supporting new families with a baby with Down’s syndrome.

What I very quickly realised was that my blog would serve as a portal into a whole online community who would help me through the toughest of days, the worrying moments and whose families would lead the way for us through example.

Blogging brings us access to a fantastic network of support and friendship and often supplies the answers we seek that we can access in small chunks whenever we are ready.

It reinforces that we are not alone.

Campaign work – Often the blogging community join forces to create lasting change.

Our voices are stronger and louder together, and we can see them put to good use working on projects such as calling for more accessible toilets, supermarket trolleys with support for disabled children or adapted clothing and larger nappies to be more readily available.

These, along with campaigns to educate the public and medical professionals about various conditions are having a real impact on the way families like ours experience life.

Fundraising – Another way in which SEND bloggers often join forces and work together for good is fundraising for their charities, as well as raising the profile of the work they do.

With social media and hashtags often going viral on awareness days, it can be a straightforward way to collect vital funds.

They’d have us envisage angelic children dressed in white, cooing over new wooden toys, while we plan our next family holiday in sunny climes, fill our inspiring bullet journals with brightly-coloured wisdoms and simultaneously sweating it out at the gym we’ve signed ourselves up for.

I’m not sure about you, but I feel that I have only just survived the Merry Season with my sanity intact.

The children had a good time, they liked their pressies. They also squabbled and had to be prized away from screens to go on dog walks.

The turkey dinner was delicious, but we burnt the ham.

It was wonderful to get together with extended family for a house full of fun and games, but the long hours emprisoned in car journeys were grueling.

It was, in many ways, a ‘good enough’ Christmas.

The whole month felt like a marathon, children over-excited, routines smashed, too many school concerts and fayres, sleep lost.

My bank balance is looking at me over the top of its spectacles like a stern head teacher, my energy levels are depleted and I’ve now collapsed into a snotty, shivery heap on the finish line.

I can only manage to think about keeping Natty well this Winter.

Time to make some New Year’s resolutions then? Anyone?

I thought not.

Well, for me at least not in the traditional sense.

I’m too tired to set myself impossible goals that will make me feel like a failure when I can’t stick to them.

And I’m not going to turn my life upside down just because 2017 has dawned.

After all I might need some cake and duvet days to get me through January. And that’s OK.

What I am going to try to do however is nurture myself in vital, yet simple ways.

Small steps that will keep me going until the warmer weather. It’s time to invest in me.

As carers we often just carry on.

Making arrangements for a routine health appointment such as a smear, blood test or dentists’ check up might seem like a lot of hard work for nothing, or it may slip your mind completely.

Life can be overwhelming, as if we are swimming upstream, and adding more to your over-full plate might feel like the last thing we want to do.

“Fit your own oxygen mask first.”

But remember the airline mantra of not fitting someone else’s oxygen mask until you have fitted your own? That is so true for all parents and particularly those with children with disabilities.

So this New Year, instead of shelling out on expensive fitness classes, having a dry month and eating lettuce, I am making lots of important appointments that I’ve been putting off for a long time and I’m making a list of simple ways to nurture me.

It’s time for a personal MOT if you like.

I have used a pack of the children’s bright pens to write in a new-ish notebook to remind me of what my body needs, along with the shopping lists and the cute little drawings of people with arms emerging from their heads that Natty does.

It’s not quite bullet journaling, but it’s ‘good enough’ for me.

Try choosing a couple of things from the list below, use it to think of other ways to look after yourself, or ignore it completely. It’s up to you, vital wonderful you. Nurture yourself however you wish.

Happy New Year

Hayley x

—————

‘Good Enough’ Ways to Nurture Yourself in 2017:

Book Routine Health Checks

Are you up to date with your dentist, smear tests, contraceptives or breast checks?

Do you need your blood pressure monitored?

Is it time to review any medication you are taking?

Set aside half an hour with a phone and a calendar and get booking those appointments.

Look After Your Back

See a physiotherapist and do some stretching daily.

Dust off a back brace or hip belt if you have one.

Splash out on a lumbar support for your chair and do a few of those stretches you’ve been told are good for you.

Failing that, simply lying on the floor eases my aches and pains.

Drink More Water

We all know we need to do that one.

Tap water will do, it’s free.

Get More Sleep

Often easier said than done.

I am a huge fan of the short afternoon nap mind you.

Learning not to feel guilty about it was tougher than fitting it into my routine.

Say, “No”, More Often

Why do we feel so guilty when we say no to others?

Be realistic about what you can and can’t take on, know when you have reached capacity and be honest about saying so.

Get Some Fresh Air

Stick your head outside and grab a few lungfuls of air if you can’t get out for a walk each day.

Opening the bedroom windows for a few minutes to change the air in the room stops me feeling stale too.

Ditch the Negativity

Mute acquaintances who drag you down on social media.

Instead call a friend who makes you feel happy.

Life can be challenging sometimes and it’s nice to be with someone who helps you see the good things in every day.

Consider joining a positive group of parents on Facebook such as Story of Mum who also hosts retreats and online crafting sessions, or Embrace Happy where we are encouraged to realise that although not every day is good, there is good in every day.

Embrace Happy Facebook Page

Story of Mum

Carers UK – Information on looking after yourself

The soppy films we watch whilst writing cards to dear and distant friends, the stress of the ever-swelling lists of festive chores, anxiety over trying to keep our children out of hospital at a time when school becomes a, ‘viral soup’, and calming over-excited little ones whose routines have been replaced with tinsel.

I become introverted and pensive too as I remember Natalia’s birth at the beginning of December.

The excitement of celebrating her birthday is mixed with recollections of the shock we felt hearing the unexpected news that she has Down’s syndrome, I remember the worry as we sat by her side in NICU waiting to hear more about her heart condition, and I re-live the first time we nervously brought her home to join our family on Christmas eve, vulnerable and dominated by frightening tubes and monitors.

I desperately wish I could re-live those early days, knowing what we know now, but instead I remind myself of how far we have come while we make paper chains and gingerbread houses and wrap gifts to festive tunes on a loop.

Set the Nativity Scene

If none of that exhaustion reduces you to tears, then the school/church/nursery Nativity play is sure to set you off.

There really is nothing like little ones performing the best-loved Christmas story, their tiny voices repeating well-rehearsed lines or holding stars aloft, heads clad in granny’s cleanest tea towel while an audience of proud family strain to see/hear and capture the all important phone footage.

Being in a Nativity play is a rite of passage for many isn’t it, a shared experience we can all relate to.

And of course the moments where it doesn’t go to plan; the nose-picking, a child shouting her lines or a sheep poking her tongue out at a shepherd are the comedy moments that will be remembered forever.

Our Little Star

So three years ago when Natty came home from school clutching a slip of paper announcing that she was to be Mary in her class Nativity the tears of pride immediately sprang forth as we scooped her up into a family group hug.

Not a big speaking role with lots of tricky lines to learn, but one which nonetheless allowed our confident little attention-seeker to be centre stage and cradle a favourite doll.

The part seemed perfect.

It was all very exciting, yet I was blissfully ignorant of the emotional tsunami to come, as we rehearsed and created costumes in the weeks leading up to the big event.

Realisations You Weren’t Expecting

The evening dawned.

We arrived early enough to numb our bottoms on wooden pews near the front. I began to feel nervous.

Nervous of whether Natty would enjoy herself, nervous about what other parents would say about her being cast as Mary, nervous about whether she would remember her lines or even agree to take part at all.

My eyes pricked and I reached into my bag to wrap my fingers around the embroidered handkerchief that I had to wait until the play at least started before using.

And the light dimmed.

The biblical characters filed in to, ‘Ooohs!’ and, ‘Aaaaahs’.

My husband nudged me as she walked past, beaming from ear to ear and rubbing her, ‘bad back’, whilst hobbling down the aisle with a pillow strapped around her middle and a fake facial expression of strain unique to heavily pregnant women.

And that was the moment my curbed tears gave way to full silent sobs.

There, in that second came a realisation that I wasn’t expecting. And it hit me hard.

Because seeing Natty up there on stage, playing the most famous and gentle mother of all mothers, the Virgin Mary, lovingly holding the symbolic baby Jesus in her arms was a very powerful and graphic reminder that our youngest daughter is unlikely to ever become a mother herself.

All at once I began questioning that if she was physically able, would it be in her best interests emotionally.

Without setting limits, I guess we hope that becoming independent and being able to look after herself with support is our ultimate aim.

The chest-deep sobs came from some primeval place within my soul, a place that the head cannot rule over however logically you try to reason it out.

I became cross with myself that it mattered so much whether she would bring us grandchildren. I was again giving myself a pep talk about accepting each of our children for exactly who they are.

Acceptance and Appreciation

Now, Natty’s self-appointed ‘fairy Godmothers’ don’t have any children. Her second Cousin doesn’t have any offspring and one of my dearest friends cannot bear the thought of reproducing.

But for all these women it is a lifestyle choice, a decision they have reached.

Having children isn’t the be all and end all in life, but if you want them and are denied that privilege it takes a lot of soul-searching to come to terms with that fact.

It’s a loss, an empty void that is hard to fill.

And one day we may have to have that heart-breaking conversation with Natty.

We might have to explain to a young woman who loves babies, that she cannot become a mother, as her elder sister is likely to.

I’m certain she will fill her life in other ways, maybe get a job in childcare, be a fantastic aunt, or maybe it will never cross her mind to be a parent and I’m overthinking the whole thing.

It’s all a long way off and I don’t know any of the answers yet.

I’m sure when the time comes we will follow whichever path stretches out before us.

And for now I’ll take a leaf out of Natty’s book. I will try to just live in the festive moment.

Happy Christmas from us all at family Downs Side Up.

Glen Scrivener’s Nativity film features actors and narrator with Down’s syndrome. Watch He Came Down here.

Everything has a crack in it, it’s what lets the light in.

The reaction has quite literally overwhelmed me.

A World Without Down’s? is a beautiful film, which not only tells Sally’s personal story of parenting three boys, one of whom, Olly, has Down’s syndrome but also explores society’s attitudes towards disability as well as the ethical implications of the way in which non-invasive prenatal testing (NIPT) is being delivered.

The film was beautifully put together, combining humour, heart and fact.

It weaves a vast array of experiences together with interviews from scientists, ethicists, champions with Down’s syndrome, parents and those who have experienced or offer support following a termination.

It also provides a disturbing look into a possible future without Down’s syndrome when Sally visits Iceland – where they have experienced 100% termination rate for babies with Down’s syndrome in the last five years.

Is this where we want to be heading as a society, with other genetic conditions following suit?

Is Down’s syndrome just the canary in the mine?

It was always going to be an emotional and emotive subject, and in discussing its themes the more vocal of opinions reflected perhaps viewers’ personal experiences and thoughts before they had watched.

These ranged from cries for support, guilt, regret, certainty, a need to be heard, requests to work together, frustrations at lack of information, fear of choice being removed and relief that at last someone was putting a spotlight on our minority group.

Every media outlet covered the story, from every possible angle.

Many tears were shed. It was a cathartic week for many.

Having watched a World Without Down’s? several times now, I have gained something new with each viewing. The piece works on so many levels and Sally succeeds in maintaining balance whilst bringing emotion to a topic that, sadly, has often had that crucial human dimension removed as it is debated like so much hot air, with unique individuals reduced to a list of characteristics in a medical book.

A feminist, Sally is not against screening, nor terminations, ‘there are no bad guys in the film’ she told me.

But this high-profile Mum saw the introduction of NIPT and public debate around late term abortions as a pivotal moment in disability history in which to assess and redress the balance of information given to women during pregnancy, for only with the full picture can prospective parents make fully informed choices that are right for them.

Her film pleads for greater public debate…

…for stereotypes to be challenged, for the medical profession to listen to families’ narratives and for those with the condition to also be consulted.

As one GP Steve Laitner wrote to me, “Choice that is not informed, but moulded by societal discriminatory pressure is not really choice at all.”

And in just one hour of television Sally and film maker Clare Richards have certainly succeeded in starting those important conversations.

One parent wrote:

“I think what the programme portrayed beautifully was that science and the test are simply tools which we can use.

Our ethics will design how we use them and our humanity will choose how we help each other.”

And yes, the film has cracks in it, it is a start point and could have been easily extended into a comprehensive series, but just as Sally quotes Leonard Cohen towards the end, we all have flaws.

It is the cracks, dear reader, that lets the light into our lives. And that is very illuminating indeed.

Watch A World Without Down’s Syndrome?

The TV was producing an extra layer of mayhem, switched on because friends were appearing on the BBC 2 Sunday Morning Live Show.

Firstly, a showcase of the work of wonderful actress Sarah Gordy, who has Down’s syndrome.

We all competed to say, ‘Shhhhh!’ the loudest.

The conversation then shifted to the studio where a panel of experts were to discuss the implementation of the new Non-Invasive Prenatal Test which is being trialled throughout England at the moment.

This antenatal screening test is the subject of a Nuffield Council for Bioethics review.

It’s serious business, the ins and outs of which will have to wait for a subsequent column.

We saw parent Lynn Murray who was there to portray her lived experiences and to call for updated, unbiased information to be given to parents before being given time to make decisions which are right for them.

Portraying the medical model of disability was a consultant, and a Rabbi was on hand for a deeper spiritual insight.

Or so I thought.

This well-respected man, a theologian, clearly had very outdated ideas of Down’s syndrome.

I stood, frozen to the sport, mouth open.

Tears began to well.

Our eldest daughter started shouting at the TV, before crying too.

Our high-speed domestic ordinariness had been stopped in its tracks by words that stung.

They are loyal and happy when young children but when they grow up and have to go into a care institution, their parents will worry that they are not able to visit.

An adult cannot sustain itself.

A big burden.

A Downs.

It.

So many myths.

So many dehumanizing words.

And such a damaging attitude towards all members of our communities who need a little more support than others to live well and be heard.

The assumptions made by the Rabbi are shared by many of course, ignorant of the joys and the possibilities that accompany the challenges of parenting a child with Down’s syndrome.

Oddly, I didn’t immediately want to write in and tell him that Natty is more than a 2 dimensional musical and loving Down’s cutout.

That she has expert comedy timing, an intuitive sense of mischief, can swim like a fish, twerk like Rhianna and looks more like her own family than any other child with the same condition.

I didn’t think of telling him that plenty of adults with Down’s syndrome live independently with friends or a loved one with the right support.

Many have a job and a buzzing social life that he’d be envious of.

No, the word that stood out for me was, ‘burden’.

I wanted to educate him, tell him that painting one group of people in society as a useless load to be hauled along at the cost of the rest is very dangerous ground indeed.

History teaches us that it divides and creates resentment.

The Rabbi should have understood that more than most.

And while I wanted to remind him that we all need support from others and contribute to our communities in differing ways that cannot simply be measured financially, all I could think of was that it was this kind of mentality that led those with a learning disability to be the first victims of the holocaust.

The Rabbi should have known that too.

Yet here he was, on a national television debate giving the very kind of subjective misinformation that leads to inequalities, discrimination, segregation and even worse, hate crimes.

Currently as a society we are walking in a shaded area between respecting the reproductive rights of women and their choices whilst not coercing them in any way with loaded language and also respecting the rights and voices of those with a disability.

Sadly, the Rabbi’s words will have served to create more fear, stigma and division.

He should have known better than that.

Also on BBC 2, a documentary, headed by actor Sally Phillips, is due to air at the beginning of October, exploring the way in which the new screening tests are being delivered, the ethical issues around that and the possible effects on the Down’s syndrome community.