My Response To The Daily Mail, October 2014

As you may know, October is Down’s syndrome awareness month. There are a lot of lovely people sending out fantastically positive articles, photos, Facebook statuses, tweets, media stories and so on, in order to raise awareness of the condition. However, there is a lot of negativity too – articles, stories, tweets etc about people with Down’s syndrome. People with the condition are often the ‘butt’ of people’s jokes and internet memes. One story was so ludicrous last week that I actually found it hilarious (you may well disagree) – it was so offensive and off the wall that I can only hope that no-one believes it! Articles like this are often not worth commenting on or getting worked up about. (Here’s the link: http://www.pyroenergen.com/articles07/downs-syndrome.htm)

Occasionally though, I read something that profoundly affects me. That hurts my heart. That needs a response. An article in the Daily Mail came to my attention featuring a mum who chose to abort her baby, Oscar, because he had Down’s syndrome. She claims it was the kindest thing to do for him. I thought of Asa and how different our life would be without him in our life. I posted my thoughts on Facebook and a friend suggested I write to the Daily Mail.

Here is what I wrote:

I’m so saddened by this article in the Daily Mail: ‘Aborting my baby Oscar was the kindest thing to do for him’. http://www.dailymail.co.uk/femail/article-2787202/Aborting-baby-Oscar-kindest-thing-I-Woman-agonising-decision-end-child-s-life-discovering-Down-s-syndrome.html

I read this article and cried. My husband and I have two children, Emelia aged 4, and Asa our son aged 2. Asa was born with Down’s syndrome in 2012 & he’s 2 years old. Let me explain why I shed so many tears reading about Oscar’s life that was cut short.

I could actually empathise with the mum, Suzanne, because Asa too, like Oscar, had a lot of fluid on the neck at our 12 week scan. We were then ushered in to that small side room of ‘bad news’… We were referred to the Fetal Medicine Unit at the University Hospital of Wales, Cardiff the following week. There we were told Asa would have a 1 in 2 chance – 50% – of having a chromosome abnormality, the most common being Down’s syndrome. Our baby also had a 10% chance of a heart problem with no chromosome abnormality, & a 15% chance of the pregnancy ending in a miscarriage with 25% chance of no medical or health problems. Initially, embarrassing to admit, it’s safe to say Jon & I were gutted to receive this news – we feared our son wouldn’t survive but we also feared he would have Down’s syndrome. This was mainly down to our own ignorance and fear of Down’s syndrome as we knew very little about the condition. We chose to continue the pregnancy without any further diagnostic tests, simply because Asa was our child. The diagnostic tests carry a very small chance of miscarriage – about 1% of pregnancies will end as a result of these tests. As Christians, we didn’t want to take that chance because life is precious. If tests diagnosed the Down’s syndrome then we would not have terminated our baby’s life. If he had Down’s syndrome, we’d research it and we’d cope. I had regular scans throughout the pregnancy to monitor the baby. Asa did seem to have a small heart problem and we saw a fetal heart specialist for detailed scans and he would be scanned after birth. When he was born and the doctors asked to speak with us, we knew then he had DS. The thought of terminating his life sickens me to my stomach. Ok DS isn’t what we would have chosen for him, but it’s certainly not a reason worthy of ending his life. What really is shocking and heartbreaking is thinking back to being told we could still have a termination if we changed our mind, even up to 32 weeks in the pregnancy, EVEN WITHOUT A DIAGNOSIS! …Because the LAW says that is ok… This is the ‘Category E’ section of abortion law. The law also states that a baby with a ‘significant disability’ & confirmed diagnosis can be ‘terminated’ right up to point of birth (I would strongly disagree that DS is a significant disability – the law here is extremely grey and needs challenging), and if that precious little life is born with difficulty breathing or not breathing, doctors do not have to resuscitate that baby’s life. When Asa was born, he had problems breathing and needed the CPAP machine. The doctors saved his life… So to think that a baby could be left to die in this painful inhumane way absolutely breaks my heart. The law is in desperate need of a review of ‘category E’ abortions.

As a Christian, I am pro life. However I wouldn’t judge any parents facing this situation. What I would like to see is more up to date and relevant information and support being given to parents receiving this kind of news. The medical profession, generally speaking, seems to be biased in favour of terminating the lives of children like Asa. This is so wrong. Parents can ultimately do what they feel is best (and let God judge, not us); but if they are choosing to end a baby’s life simply because they fear DS, or have the wrong, out dated information, or out of ignorance, then that cannot be condoned. But if they choose to terminate even after correct, up to date, support and information then obviously that is their choice.

Having a baby with Down’s syndrome isn’t the end of the world. In fact, it’s the start of a new one. All babies deserve a loving home, someone to believe in them and be a voice for them, whether or not they have Down’s syndrome.

This is why I share a lot of our life with Asa (and Emelia of course). We’re just an ordinary family, getting on with life. We have ups and downs (pun!) just like the next person. The hardest part of our life with Asa so far has been his wretched Reflux. Dealing with that on a daily basis is challenging!!!! He has a hearing loss because of glue ear, but many kids without DS have that! He may need glasses in a few months, but again, many children without DS need glasses. Do you see where I am going with this?! You wouldn’t terminate a baby just because they have a slight hearing loss or poor eyes, would you? Thankfully after birth, a heart scan revealed that the heart problem resolved itself and we were discharged from the neonatal cardiologist. We know that many babies have a range of heart problems which can be serious and worrying for parents. We had worried when it was a ‘minor’ problem so we can empathise with other parents. Babies born with heart problems now have access to some of the world’s top heart surgeons. Miracles are seen regularly in paediatric heart surgery. We are fortunate to live in the UK where we have the NHS and complicated life saving operations occur daily. Little Oscar only apparently had 1% of survival… I’m sure that must have devastating news for any parent. But it’s still a chance at life. A chance for a highly skilled heart surgeon to operate. A chance that he would have pulled through and now be running around playing with his older sister and younger brother. A chance to love and be loved every single day.

Asa is very much like his sister. Our life is a bit different to when Emelia was little. We now have hospital checkups for ears (hearing) & eyes, and appointments for physiotherapy, occupational therapy, speech therapy, communication and language development groups, a portage worker (child development service). These things can sometimes be a minor inconvenience but all in all are there to help Asa develop to his full potential and to support him as he grows up.

Asa is loved, happy, grumpy at times, sociable, cheeky, blows raspberries, modelled for clothing company Boden, annoys his sister by pulling hair, pulls my glasses off, empties the toy box, empties the nappy change box, puts the remote control under the settee, has Reflux, gives me kisses by gently licking my face – and he makes me laugh and makes us proud every day! He’s just Asa. Our son. A brother. A grandson. A cousin. A nephew. A great nephew. Precious. Adored. A child of God. WANTED.

October is Down’s syndrome awareness month. I hope this response helps in some way to raise awareness about it. Thank you for reading.

Lizz Shaw.

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If you would like to read more about the Disability Abortion Law, Hayley at Down’s Side Up has spoken in a Parliamentary debate and written about it here: http://www.downssideup.com/2013/02/evidence-by-downs-side-up-in.html

Makaton Training

Today, Jon and I started our formal Makaton training. We have completed part one, and the second part is next Tuesday. I loved it! I don’t want to sound like I am bragging, but I find it quite easy to pick up Makaton, as I do in general with languages. Some signs are a bit obscure, but a lot of them make sense. The challenge now is to remember these signs, sign appropriately and sign consistently to Asa. I do feel a bit under pressure as the main carer of Asa. Jon doesn’t find Makaton as natural as I do, so I’m trying to gently encourage him… (Ok, more like on the spot tests, poor man!!)

A few people have asked me why we’re signing with Asa. Some people assume it is because of his hearing loss. There are a few reasons, and I’d love to share these with you, as well as some background information.

Makaton is a sign, symbol and speech language programme to help children and adults with their communication. Using signs does not replace speech, but used alongside normal speech, in spoken word order (unlike  BSL (British Sign Language), which uses a different word order). Using signs can help children with no or limited speech or speech that is unclear. Symbols can also be used to support communication in many different ways. Symbols match to a sign, and can be used to help those with no or limited speech or who are unable or prefer not to sign.

With BSL, you sign every word in the sentence. With Makaton, you generally only sign the key words. So in a sentence like “Look at the ball”, you would say the whole sentence but just sign ‘look’ and ‘ball’. It’s very important to remember to speak all words out loud and not just silently sign.

Jon and I would love to be able to teach some friends and family some signs to use with Asa. Please ask us if you have any questions or want to know more. It is our hope that we can host an informal coffee morning at our church to show a few signs to friends there, particularly those that volunteer in the crèche or Sunday school.

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You can get free Makaton resources from the Makaton charity website. Friends and family, please click HEREto browse the selection (PDF files). These are usually seasonal, plus some nursery rhymes and booklets.

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The following information is from the Makaton charity website:

Being able to communicate is one of the most important skills we need in life.  Almost everything we do involves communication; everyday tasks such as learning at school, asking for food and drink, sorting out problems, making friends and having fun.  These all rely on our ability to communicate with each other.

Makaton is a language programme using signs and symbols to help people to communicate.  It is designed to support spoken language and the signs and symbols are used with speech, in spoken word order.

With Makaton, children and adults can communicate straight away using signs and symbols.  Many people then drop the signs or symbols naturally at their own pace, as they develop speech.

For those who have experienced the frustration of being unable to communicate meaningfully or effectively, Makaton really can help.  Makaton takes away that frustration and enables individuals to connect with other people and the world around them.  This opens up all kinds of possibilities.

Makaton uses signs, symbols and speech to help people communicate.  Signs are used, with speech, in spoken word order.  This helps provide extra clues about what someone is saying.  Using signs can help people who have no speech or whose speech is unclear.  Using symbols can help people who have limited speech and those who cannot, or prefer not to sign.

Makaton is extremely flexible as it can be personalised to an individual’s needs and used at a level suitable for them.  It can be used to:

  • share thoughts, choices and emotions
  • label real objects, pictures, photos and places
  • take part in games and songs
  • listen to, read and tell stories
  • create recipes, menus and shopping lists
  • write letters and messages
  • help people find their way around public buildings

Today over 100,000 children and adults, use Makaton symbols and signs.  Most people start using Makaton as children then naturally stop using the signs and symbols as they no longer need them.  However, some people will need to use Makaton for their whole lives.

Colin Brewer: A Disgraced Politician

I first became aware of the comments made by Colin Brewer a couple of months ago, and I was infuriated and very upset. I didn’t blog about it then because I was too upset. Another Geoffrey Clarke? Another bigoted man in a position of power (however small) with more hateful opinions about the most vulnerable in society. Brewer is – was – a local councillor in Cornwall. He publically made comments about children with disabilities, that they cost too much money and should be killed at birth, effectively “put down”. However, he gave some half hearted apology, stepped down under the weight of the nationwide pressure, and we thought that was the last of it. We breathed a sigh of relief and got on with our lives.

I recently heard though, that he is currently standing in the May elections as an independent councillor. I’m not sure if he is for real! This renders his previous apology as useless. False. Worthless. Is he that naive that he thinks people will have forgotten and excused his disgraceful comments? To make it worse, in a follow up interview recently, he made references that farmers put down lambs when they are born with a disability. He doesn’t believe there is a difference between putting down a disabled lamb and a precious child with a disability or additional needs.

Clearly there is no change in his opinions, no remorse or regret. No compassion for HUMAN LIFE. This man is standing for election. A position of power, albeit at ‘local’ level. This is a position elevated in the community. A position of trust. But how is it even possible that he is allowed to stand again? He clearly does not have value for all human life. Who knows what other extreme and hateful views he holds?

Is this the sort of man we want in power? Extreme views and heartless opinions? When the Disability News Service asked Brewer whether there was a good argument for killing some disabled children with high support needs, he answered, “yes, that is why I keep as far away from health in the council as I can.” When a child is born with a disability, Brewer believes that the cost of their support and needs should be weighed up against their right to life.

Life is ALWAYS more precious and more important than money. Every. Single. Time.

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Note: Since publishing this blog post, news broke that Brewer won the local election by a mere four votes on 3RD May. Brewer’s comments received nearly 200 complaints to Cornwall council – I was one of the complainants – but the council admitted they did not have the power to ‘sack’ Mr Brewer. The council said his comments were “OUTRAGEOUS AND GROSSLY INSENSITIVE REMARKS”. However they were able to impose heavy sanctions and censorship on him, stating he would not be able to work with any council children’s health group(s), among other sanctions. After much national – and indeed, worldwide – anger, Brewer verbally announced his intention to resign from the council in July 2013. As yet, we have not seen or heard about a formal resignation letter.

 

Three Parties In Three Days!

We have had a very busy, party filled, past three days! Emelia and Asa have had two party invites. The first invite was to Emelia’s friend’s birthday on 20th December. Mia is now three years old, and she will be in the same school year as Emelia, hopefully in the same school! It was a great afternoon, filled with bouncy castles, party food, lots of happy sugar filled children and a beautiful rainbow cake made by Mia’s mummy, Keri! (Although, we’ve recently stopped Emelia’s naps in the day time as she was taking rather a long time to drift off… so when it was time to leave, it was a different story!). Asa got to hang out with his buddy Rog. I have a feeling they will be great friends as Asa grows up and understands how special his ‘Uncle Rog’ is. What is age between friends?

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Asa with his Uncle Rog! …Pass the parcel.

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On the bouncy castle…

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Asa looking adoringly at his buddy, Rog.

Thanks Mia (and parents), we all had a great time!

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Our second invite was to my Grandma and Grampy’s annual ‘Guy’ family get together. I love this family tradition. It has grown in the last eight years to include Jon, his parents, Emelia and now Asa, as well as my parents, two brothers (and one’s girlfriend) and my little niece Cerys. Sometimes my uncle and wife are there too – it’s a busy evening! It’s a good job that my grandparents had a large conservatory extension a number of years ago. My grandparents live in Llangybi, near Usk, so we don’t see them as much as we’d like to. This annual evening is an early Christmas, particularly for them.

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Emelia and her cousin, Cerys, enjoy spending time together.

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Asa and his Great Grandma.

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The men. Asa, with his dad, grandad, pops, great grandad and great grampy!

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Our third invite was to Doug and Joy’s children’s Christmas party, which was this afternoon. Emelia was invited last year, and this year, both our children were invited. I actually found it very moving, that these wonderful and generous people would open up their home to all the church children in primary school and younger…

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Asa and his buddies, Archie and Ethan, only 7 weeks apart in age. Our prayer is that these three boys will be great friends and encourage each other in school and church!

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Our friend Leon loves little Asa. Leon, you’re a legend – we know you’ll be keeping Asa entertained for years to come!

P1090694Can you guess who it is?

Each child and baby were bought a present. Emelia loved her doll from ‘Father Christmas’. Asa was the youngest there, and I had tears in my eyes when he sat on ‘Father Christmas’ lap, and we opened his present for him (toy links – perfect for his tiny hands!). To top it off, the children were also given a party bag filled with chocolate and smaller stocking filler toys. I can’t really explain why I found this part of the party so moving. I think it’s the fact that Asa is just seen as one of the children, ‘one of the gang’, totally and utterly unconditionally accepted by everyone in Bethesda. Loved. Cared for. Prayed for. This may possibly be the only public place he is accepted as just ‘one of the kids’, for who is he, where his Down’s syndrome isn’t that big a deal. I hope I’m wrong… But sometimes I hear stories of parents having to fight for inclusion of children with disabilities, whether physical or a learning disability, and that frightens me. Other strong, local parents are fighting and paving the way for those of us with younger children, and to them I am grateful.

Today however, Asa and Emelia have had fun hanging out with their friends from church. In fact, over the past three days, they have had nothing but fun (and sugar!!!!)! They have just been children. I think for children to just be children is probably the best gift of childhood. That, and knowing Jesus for themselves!

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