Belfast Telegraph

Tuesday 16 September 2014

Mums of children with Down's syndrome on why they're backing Lose the Label campaign

Family ties: Hayley Devine with her son Matthew and daughter Mollie
Devoted parents: Sinead and Paul with daughters Anna and Ruby
Michelle Clark with daughter Mara

When parents hear that their child has Down's syndrome, their lives are never quite the same – in spite of the love and devotion they give to their offspring.

Every year in the UK, around 1,000 children are born with the genetic condition that carries differing levels of learning disability with it, along with distinctive physical characteristics and sometimes a range of other medical conditions.

Down's syndrome is caused by the presence of an extra chromosome in a baby's cells – this extra chromosome occurs purely by chance at conception and is irreversible.

Although the chances of having a baby with Down's syndrome are higher for older mothers, more babies with Down's syndrome are born to younger women.

A new Facebook campaign called Lose the Label is challenging people's attitudes to children and adults with Down's syndromeby asking them to see them as individuals first and not just to see their condition. We speak to three mothers of toddlers with Down's syndrome who are taking part in the campaign.

'People need to be better educated on how to refer to Down's syndrome'

Hayley Devine (40) from Strabane, Co Tyrone is very proud that her youngest child, Matthew (3), is involved in the campaign and tries to politely correct the language used by some people when they refer to his condition.

Formerly a classroom assistant working with children with learning difficulties at Knockavoe School, Strabane, the single mum also has an older daughter, Mollie (12). She says:

I have this saying now that I wouldn't change Matthew for the world, but I'm trying to change the world for him.

I got involved in the campaign, as I'm desperately trying to spread the word and change things.

I'm now chair of a Down's support group in Strabane, as there wasn't one when Matthew was born.

I went for my 20-week scan at Altnagelvin Hospital and a defect in Matthew's heart was picked up. We were sent to the Royal (Victoria Hospital) and the cardiologist confirmed that Matthew did, indeed, have a serious heart defect, and there was a 80% chance that he would be born with Down's syndrome.

I was totally devastated, as I thought that 80% was a bit high to hope otherwise. But, when I got over the initial shock, the Royal were fantastic and put us in touch with a lovely cardiac liaison nurse.

They thought when Matthew was born that he would need to have surgery immediately, but thankfully that wasn't the case. He was born at a healthy wee weight of 6lb 2oz and we were home within five days. He's just kept thriving and putting on weight.

Then he had his open heart surgery at 11 months to repair the defect. We haven't looked back since.

Matthew is a bundle of energy – too much energy at times – and he has come on so well.

I got involved with the campaign not only as Matthew's mother, but also because I have worked as a classroom assistant at Knockavoe and I have always been annoyed when people refer to children as 'that Down's baby, or child'.

I even had to correct my own sister, Lynn, at the start – she's devoted to Matthew and is absolutely brilliant with him, as all my family are – about how to refer to Matthew's condition. He has Down's, he's not Down's. Lynn happened to introduce him as, 'He's Matthew, he's a wee Down's' and I said, 'No, Lynn. He has Down's' and she immediately apologised.

I know she wouldn't mean to offend me for the world, though.

An elderly lady even once referred to him as a mongol and I decided not to take offence as that was the terminology that was used years ago and she just didn't know better.

People need to be better educated and I understand that as I probably would have been the same if I hadn't come through it. It's an entirely different manner when it comes to your door, when it happens to your family.

I only had one negative experience at the start with someone in the street– and I think I was still trying to come to terms with it myself – but now I just think when people say things, it's only a wee slip of the tongue. It's not personal, it's not directed at me, or at my child. I just correct them in how to refer to Matthew and his condition.

The picture of Matthew is from when he goes out shopping with me in Asda. Sometimes, I can hardly get round to do my shopping with so many people stopping to chat with him and me.

I'm delighted that his picture is involved in this campaign.

Children with Down's are now being featured in all sorts of publicity campaigns and why not? They are absolutely beautiful."

'I get so angry when people refer to my son by his condition'

College lecturer Kerry Robles (35) lives in Belfast with her Mexican-born husband Damian (30), a graphic designer. Their oldest child, Hanaki (2), has Down's syndrome. They have also have a 15-month-old daughter, Marley. She says:

It was a major shock for us when we had Hanaki, as we had no inkling about Down's syndrome whatsoever. We had been living in Mexico for about seven years. I had all the routine tests in pregnancy, but didn't have an amino (amniocentesis test) as I wasn't in the age bracket considered at risk.

I wanted to come home to Belfast to have our baby and raise our family. While I was in labour at Belfast City Hospital, they became concerned that his heart rate kept dipping and they didn't know why.

Only at that point did I think that there might be something wrong, but you never think of Down's syndrome, or any other genetic condition.

When he was born weighing 6lbs, it was a normal, natural and quite serene birth. All that I noticed was that one of his ears was a slightly strange shape, like it hadn't been formed properly.

We were totally traumatised by how we found out. It was literally three minutes after he was born that the midwife kept on asking 'Who does he look like?' over and over again.

Then, out of the blue, with no warning, she said: "I think he has the characteristics of Down's. I'm going to get the consultant."

With that, our world just completely collapsed. I don't think I've ever been in so much shock in my life.

I felt that those previous few moments of us just simply enjoying Hanaki were taken away from us. We both feel really strongly that we were robbed of that.

We decided to have another child quite quickly. We knew the risks and, the second time, I had an amino test, as I wanted to know.

However, Damian was absolutely convinced that no matter what result we had from the test, we were having our second child.

I really like the Lose the Label campaign. Once I clicked on and saw this really iconic image and wording, it just completely inspired me. I wanted to get involved.

The picture we chose of Hanaki on his dad's shoulders was taken one day when we were in Dublin and he had just turned two.

It's a real bugbear for my husband and I over the lack of person-first language – that's referring to Hanaki as a person, not his condition.

I can't say how many times I've corrected people in the street who stop me to admire him and say, 'Ah, he's gorgeous, but he's Down's, isn't he?' And I say, 'Actually, no. He's called Hanaki'.

I actually can get very angry about it when he's defined, or shunned, due to his medical condition, instead of just appreciating the unique little boy that he is.

The medical profession actually can be the worst at using this language, which is really old-fashioned and dates from the 1950s.

I had to take Hanaki to A&E recently as he had cut his head and before the doctor even asked his name and how he was, he said, 'He's Down's, am I right?'

Hanaki was born with a couple of holes in his heart, which didn't close over, and he's just had open-heart surgery to repair them.

He's had some serious complications and, at one point, we thought we were going to lose him.

But's he's bounding around like nobody's business, he's walking now and saying a few words.

I love it that he's part of the campaign, I'm so proud of him, he's my absolute inspiration. I learn so much more from him than he learns from me."

'Most of all I just want Ruby to be very happy'

Londonderry-born Sinead Lynch (37) got involved in the Lose the Label campaign with her youngest daughter, Ruby (3), who has Down's syndrome. The personal trainer now lives in Wicklow with her husband, Paul (38), and daughter Anna (5). She says:

I was 34 when I was pregnant with Ruby, so I wasn't in the at-risk category. The thought that we could have been at risk of having a child with Down's syndrome wasn't in the equation at all. We never even thought that way – particularly after having Anna.

We didn't know that anything was wrong until the second she was born at Coombe Hospital in Dublin. It was a bit of shock, naturally.

I have to say that the medical staff handled things very well. We were very lucky in that she wasn't born with any problems with her heart and was very well.

However, at five months, she started to take infantile spasms, which is the most severe type of epilepsy, and this has affected her development more than the Down's syndrome.

In some ways, she is behind her peers who have Down's. We have had great support right from the very start and we had an liaison officer appointed to help us.

Ruby was put into the early years programme, where there's a entire team helping her – a speech therapist, a physio, occupational therapist and social worker – and they meet with us at home on a monthly basis.

I found out about the campaign, as I'm a member of a couple of parents' forums and regularly use Facebook. I just thought that Lose the Label was a very good campaign, as I feel people assume things the moment they see a person with Down's syndrome, myself included before I had Ruby.

We all have these preconceptions and it's really about trying to educate others that people with Down's are people who just happen to have a syndrome, like dyslexia, or some other learning difficulty.

The picture we are using for the campaign is lovely and we are all very proud of her, including my family back in Derry. It puts it very simply – it says that Ruby's a person, that she's Ruby first, that she's just like you and me.

My hope for her is to live an independent life; that she always has goals to strive for. Most of all, I want her just to be happy."

Fact and fiction

There is new language to refer to people with Down's syndrome which is preferred by them and their carers. We also bust some myths about this condition that have been in existence for centuries.

MYTH: People with Down's syndrome don't live very long

FACT: Today, people with Down's syndrome can look forward to a life of 60 years plus

MYTH: People with Down's syndrome cannot achieve normal life goals

FACT: With the right support, they can. The vast majority of people with Down's syndrome learn to walk and talk, and many are now attending mainstream schools, passing GCSEs and living full, semi-independent adult lives

MYTH: People with Down's syndrome all look the same

FACT: There are certain physical characteristics that can occur. People with Down's syndrome can have all of them or none. A person with Down's will always look more like his or her close family than someone else with the condition

MYTH: People with Down's syndrome are always happy and affectionate

FACT: People with Down's syndrome are no different to everyone else with their character traits and varying moods

Changing views one 'like' at a time

Michelle Clark is the English mum who's behind the Lose the Label Facebook campaign that is helping to change the way that society views people with Down's syndrome (DS).

The campaign that she started on behalf of her own three-year-old daughter Mara (right) has received 6,698 likes and has gone worldwide. Several parents from Northern Ireland have taken the opportunity to support the campaign.

"The reason I started the page was that most people were referring to my daughter as 'the Down's baby'. To me she's Mara," says the 45-year-old.

"So person-first language is all about recognising the person first, not their condition. I'm trying to change people's language so that they don't define people by their condition because what it is does is limited them automatically as the expectations of the child decreases so much.

"The problem is that our information on Down's was so bad and a lot of that still remains. For instance, Mara's own grandmother said that she would never have children. That's not necessarily true medically, it's just another misconception.

"I wanted to ensure that there were positive examples and stories about children and adults with Down's syndrome."

To find out more visit www.facebook.com/Losethelabel

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