Why are we so afraid of Down Syndrome?

A well written article from another mum who seems to have had similar experiences to ourselves across the pond…

Put simply people are afraid of the unknown…..the fact that we test antenatally for Downs at all, surely means its a bad thing to have?….Something that must be screened out at all costs?!  Add to that a negative attitude from medical staff that you may encounter and its no wonder the statistics for abortion of foetuses with Down Syndrome are so high.

If we stopped using eugenics to wipe out this wonderful cross-section of humanity then everyone might have an opportunity to meet/ know/ love/ befriend a person with DS and be the better for it!  The fear factor would no longer apply…..

Read her article here  

Signing is just fab!

One of the fantastic things I have learnt as a result of having my eldest daughter is sign language.  And I am a real fan!  It’s fantastic for aiding communication and learning with babies and children – whether or not they have a speech delay / hearing difficulties.  Here’s our experiences so far:-

Knowing to expect a speech delay, we embarked on learning to sign before our daughter was even born.  We bought a book on baby sign language and started learning some basic signs that would be relevant like ‘milk’, ‘mummy’ and ‘daddy’ and ‘book/story’, etc.  We started sharing books with her and signing the key signs when she was just a couple of weeks old.

Wow this book is really cool 30th Mar07


From 6 mths old, we had input from a speech and language therapist and learnt how to ‘read’ our baby’s earliest communications via eye pointing i.e. put a teddy and a doll in front of her and ask her ‘Where’s the teddy?’ (in sign and speech simultaneously) and then watch carefully where her eyes went to, praising her if she got it right.  (Note to readers: You could start these type of activities much earlier than 6 mths but we didn’t know to before that!) From these games we saw that she could understand many words (especially when reinforced with a sign).  Her first sign back to us came with “more” – we had been teaching her (hand over hand and making the movement for her) to tap her hand on top of our fist to sign ‘more’ when she wanted to repeat a game or story.  At 10 mths she would tap our fist without any help/prompt and by 12 mths she was signing it uninitiated to ask for more stories at bedtime!

Signs came thick and fast from 14 mths onwards when she also started to combine signs such as “hungry + food”.  By the age of 24 mths (2yrs) she knew and used 240 signs!  In comparison for typical children, speech comes thick and fast from the age of 2  – at 2yrs the average child will speak 100 words, by 2.5yrs they will know ~300.  So the beauty of signing for us was that we could see that our daughter had the same vocabulary as her peers,even if she couldn’t yet form the words….

It also made her think of herself as a communicator – she initiated conversations (in sign) because she knew we would understand her and respond.  It gave her confidence, allowed her to make choices, ask for things and make her feelings/ ideas known.  She made her own sign up for the Ninky-nonk in the Night Garden!  She signed in her play and even signed in her dreams giving me wonderful insight into her world!

niamh signing aged 2 – video clip showing her at just gone 2 yrs signing to me that she is going to the ‘beach’ in her ‘car’ and then ‘going’ ‘horses’ ‘to see’ ‘yes!’

In comparison, her 1st words were “Da-da” at 18mths, “yeah, nao, there, up and dow(n)” at 2 yrs.  Just think of all the conversations and communications we would have missed out on had it not been for signing to bridge the gap.

In addition, signing proved invaluable for other things too:-
An Eyesight test – when she pointed at the pub ceiling and signed “fly” at the little black dot that I had to squint at to see what it was – i knew there was nothing wrong with her eyesight!
As a Hearing test – she knew the sign for “mouse” and “house” very well but when she misheard me and signed the wrong one, I knew her hearing was poor.
As a Memory aid – for example recalling a sequence of events e.g. first do x and then, y. Or remembering 3 items. It has also been an excellent aid for me to remember peoples names (I sign spell it to myself surreptiously)!
For Clarification – my daughters speech was unclear at first and so a sign differentiated her “dare” as a chair, there or stairs!  When she was trying to get me to understand what sounded like “doh-pan”, I didn’t have a clue until she signed ‘saucepan!’
Now at school, finger spelling (British Sign Language alphabet) has been invaluable at learning and remembering spellings, especially tricky words such as ‘sword’ and ‘knight’ which have silent letters in them that you can’t hear!  Although my daughter can piece together some simple 3 letter words in the conventional way through sounding it out, she takes most of her clues from watching another person’s mouth say the word i.e. she is lip reading the shapes of the sounds.  She is not so successful when she can’t see someone else say the word and has to try and sound it out with her own voice.  However, once she has learnt the sign spelling she can recall the letters of the word much more easily.
Signing in this way has been used in some mainstream schools too to good effect.  For more info check out:   signsforsuccess

Terrible statistics…

When I, aged 32 yrs, and my partner rocked up to our 1st ever 12 week pregnancy scan, wearing leathers (having come on a motorbike) and heard the words “Are you going to tell her, or am I?” we knew we were in for an unexpected ride….

But the biggest surprise and shock to me was not the diagnosis itself but that there was only 1 assumption made by the doctors we met…that we would not want to continue with the pregnancy! I was horrified that they offered me a termination there and then, without any further testing to be certain of the cause of the large nuchal fold reading (which can be many things). (See also: Nuchal Fold Scan on this site)

And even when I went for CVS the next day, the doctor performing the procedure said “We can all live with ourselves better if we find out for certain”….except that I was having the test because I needed to know exactly what we were dealing with to get prepared…..NOT because I needed to justify termination due to an ‘adverse outcome’ (his words). I remember coming away from the hospital feeling really disappointed and sad – I thought hospitals were places to support people with medical issues, not be dealing in damn statistics and eugenics…and that little life inside of me seemed to have so little importance in their eyes….which just made me all the more protective of her!

But what of those women in a similar situation to me….how many go through with a termination because it felt like that was the advice the doctors were giving?  It might sound to them, in their confused/ shocked state, as if that is what everyone else would do……what would be expected….

And why was I rapidly hauled into (made an emergency appointment with) my local doctor once they realised I had declined any testing when I became pregnant with my 2nd child?  He wanted to talk to me about why I didn’t want testing and did I understand the ‘risks’….is it this fear that gives us the terrible statistic of 94% termination rate for babies with DS? And even worse, allows abortions up to and including birth on the diagnosis of DS? (See Abortion on Grounds of Disability: Eugenics at work? on this site).

School Sports Day

Careful balancing of the egg

Careful balancing of the egg

Thought I’d share out Sports Day experiences with you thus far (a grand total of 2!)

Last year, I have to confess I was a little nervous on our first Sports Day.  After all, competitive sports is not really my daughter’s thing – she has little legs which are still building up their strength and she is easily caught off balance due to her extraordinary flexibility and hypotonia.  I worried for her self-esteem if she came last in all the events….

I needn’t have worried….I laughed a lot (and wiped my moist eyes!) when she came last in her running race – she didn’t have a hope of keeping up with her much longer legged peers but she did it with such aplomb!  She didn’t give 2 hoots that they had left her for dust. Instead, she merrily waved to her crowd as she ran past whilst ALL the kids in the school chanted her name in encouragement!  She felt like a champion!  I felt humbled that she had found her way into so many peoples hearts and how they look out for her, support her and encourage her – children and adults alike.

Then she went on to shamelessly cheat in the egg and spoon race – there was some definite use of the other hand to hold the egg on!

However, this year…..the running race was pretty much the same, she came last to great cheers and with a big beaming smile on her face!  However, in the egg and spoon race – there was NO cheating and she came 2nd out of 4 – steady pace and careful technique won over the 2 boys behind her – very proud! 🙂

Running back to take 2nd place for the green team!

Running back to take 2nd place for the green team!

Out of the mouths of babes!

“I find there’s so many depressing articles, videos and pictures on Down syndrome, and I want to make these films to show the happiness and joy Magdalena brings to our lives I don’t have to try, we’re not a ‘special family’ Magdalena’s not an angel, we just all love each other. And this is just our lives. Disability is natural, we just live our ordinary lives, and I want to show the world that pity or sadness has no place here! ” 

Agnieszka Kolaczynska age 10, March 2013


Who is looking after who?

A beautifully written post about a man’s relationship with his big sister who has a learning disability.  This was posted on the Mencap website in April 2013.


The thoughts echo my own observations of my daughter….I quickly realised that it is often MY worries and fears and expectations, not hers, that might hold her back!  She is courageous, determined, finds her own ways around any difficulties she faces and she can read people like a book!  I try and let her tell me what she can and can’t do (within reason!) – she may not always be able to voice all that she understands/ wants/ needs/ thinks but given the opportunity she certainly shows us!  I try not to wrap her in cotton wool or baby her or worse, underestimate her, as sure as eggs she’ll prove me wrong!

Abortions on the Grounds of Disability – Eugenics at work?

I follow the excellent blog “Downs Side Up” by mum of 2, Hayley Goleniowska.  She was recently asked to go to the Houses of Parliament for a Parliamentary Enquiry into the current UK law on Abortion on the Grounds of Disability.

Current abortion law limits abortions to 24 weeks except in the case of ‘Ground E’ abortions = babies ‘at high risk’ of ‘severe handicap’ , for whom a termination is possible ‘up to and including during birth.’  The problem is that the term ‘severe handicap’ is not clearly defined and open to interpretation.

Of the 2,307 Ground E abortions performed in 2011, 22% (512) were undertaken due to babies having Down Syndrome.  It has been the collective experience of many families with a child with DS, that medical professionals often use negative language when reporting a diagnosis of Down’s and that there is an expectation that the mother would wish to terminate (see my post ‘Nuchal Fold Tranlucency Scan in ‘On Your Soapbox‘).  This could potentially put subtle pressure on the expectant mother to terminate.

Read Hayley’s report on what she said at the enquiry here


What’s in a Name? – Part 2

A subsection of an article written by John Franklin Stephens, published in The Denver Post, USA (Read more: Using the word “retard” to describe me hurts – The Denver Posthttp://www.denverpost.com/commented/ci_10351963#ixzz2AjEJSjaY

What’s the big deal about using the word “retard”?………Let me try to explain.

I am a 26-year-old man with Down Syndrome. I am very lucky…..and have a good life……I am a Global Messenger for Special Olympics and make speeches to people all over the country…..

The hardest thing about having an intellectual disability is the loneliness. We process information slower than everyone else. So even normal conversation is a constant battle for us not to lose touch with what the rest of you are saying. Most of the time the words and thoughts just go too fast for us to keep up, and when we finally say something it seems out of place. Continue reading