Friday 30 September 2016

Model mums and the good life - leading models whose children have addtional needs

People assume that models have easy, golden lives. But, as Constance Harris discovers, you can never judge what is happening in anyone's life just by how good they look. She spoke to four of Ireland's former leading models - Lizanna Kirwan, Jill Diffley, Vivienne Doyle and Natasha Byram - who all have children with additional needs, about both the joys and the challenges of raising them in a country which offers little hope for the future.

Published 02/05/2016 | 02:30

Left to right: Vivienne: dress, Alexander McQueen, Brown Thomas. Necklaces, Melissa Curry. Natasha (seated): dress, Niall Tyrrell. Shoes, Fran & Jane. Necklace, Melissa Curry.
Left to right: Vivienne: dress, Alexander McQueen, Brown Thomas. Necklaces, Melissa Curry. Natasha (seated): dress, Niall Tyrrell. Shoes, Fran & Jane. Necklace, Melissa Curry.
Natasha Byram wears - Dress; coat (on chair), both Louise Kennedy. Bracelets, Melissa Curry. Rings, Natasha's own.
Vivienne Doyle wears - Top; skirt, both Helen Cody. Necklace, Melissa Curry
Lizanna Kirwin wears - Dress, Helen Cody. Necklace, Melissa Curry.
Jill Diffley wears: Dress, Helen Cody. Necklace; cuff, both Melissa Curry. Rings, Jill's own.

Models are the heart of fashion. Models inspire creativity. They are muses to stylists and photographers and designers, who look at their faces and see something that perfectly captures what they want to express.

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People tend to look at models and judge them. I have heard it all: Oh, models have an easy life. Models are all looks and probably have no intelligence. Models get everything for free. Models only want to marry rich men. Models have golden lives.

Nothing could be further from the truth. Models, especially Irish models, are hard-working women, who are often subject to people's thoughtlessness.

I remember one occasion, when a photographer said to the room in general: "Put a bag over that girl's face, she might look better".

In a fashion shoot, people speak critically of a model's body, objectifying and breaking her down into components, speaking in front of her as though she is not there - "Her legs are a bit bandy"; "Her jawline is heavy"; "She's a bit beaky, isn't she?" The model in question could be just 16 or 17.

I have been dressing models since I was a teenager in the 1980s. Since 1990, for the Sunday Independent's fashion pages and RTE, I have cast models for fashion editorials, and I have followed Irish models around the country as I did fashion reports on shows in towns such as Ballina, Co Mayo.

It was at those 'country' shows that I came to admire Irish models for their commitment and hard work.

Typically, Natasha Byram, Lizanna Kirwan and Jill Diffley - the 'Assets girls' as they were known, after their model agency - would, along with nine other girls, get into a bus in Dublin at two in the afternoon, arrive in, say Ballina, at six in the evening.

They would then grab a sandwich and a bottle of water, do fittings, do their own hair and make-up, bring bags of shoes, tights and things to make the client's life easier (and cost less), they'd walk the ramp from 8pm till 10pm, and then pile back into the bus for the four-hour return journey to Dublin. Not a glamorous life, by any imagination.

Flash forward to 2016. I am talking to Michael Doyle, creative director at Peter Mark. He tells me that he had been chatting to Natasha Byram and did I know that she'd had a little boy with Down syndrome?

I didn't. Once a model stops modelling, the fashion industry tends to not know what their lives become.

From that conversation, I learnt that as well as Natasha, three other former models I used to work with all had children with additional needs - Lizanna Kirwan, Jill Diffley, and former Miss Ireland, Vivienne Doyle.

It struck me that a generation of gorgeous, hard-working girls I once knew had been thrown a curveball. I, too, had assumed that the beautiful young women I'd known had gone on to have golden lives after modelling.

Additional needs, special needs, presses people's buttons. We can fear it. People who are not in contact with people with additional needs can be awkward, feeling like they don't know how to talk about a child with Down syndrome or autism. They can be unsure whether to be sorry or happy for people with a new baby with additional needs. A child is a gift, right?

Lizanna Kirwan, whose seven-year-old son, Ivan, has autism, feels strongly that all of society needs to be educated about additional needs, that integration is essential for us all - to make us and our society better. Children with additional needs are just that, children who need some more support.

Talking and listening to these model mums, I have learned a lot. Natasha Byram's son, Eliot, has enriched his family's lives beyond measure. Jill Diffley's little daughter, Darcy, with her fun-making personality, would run rings around her family and friends if she could get away with it. Vivienne Doyle is a dedicated mother, who, as a result of her son's additional needs, has become a special-needs assistant in a school herself, and is learning about using yoga to support children with autism. Meanwhile, in her relationship with her son, Lizanna Kirwan has found a love she could never have envisioned.

At the request of these former models in doing this story, I arranged a day away from home and jeans. I glammed them up in fabulous gowns by Irish designers, and lined up the beauty A-team of Michael Doyle of Peter Mark on hair, and Paula Callan of Callan & Co on make-up. The model mums were then photographed by the brilliant Mike Bunn, a fashion photographer who has always admired the beauty of women as they mature.

Read about our wonderful, truly model mothers, who were photographed on the grounds of historic Castletown House in Celbridge. It's not all glory - guts have been spilled along the way.

But these former models have found beauty and meaning with their unique children.

LIZANNA KIRWAN

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Lizanna (40) started modelling when she was 18. She also went to college and did a postgraduate course in business studies and human resources. She is married and has a son, Ivan, aged seven. Ivan has autism, which has affected his ability to speak. He is in mainstream school (with support from an autism spectrum disorder unit) and loving it. Ivan was nearly three when he was diagnosed; Lizanna gave up modelling to become a full-time mum.

"I completely stopped [modelling] when we got his diagnosis," Lizanna says, "I wanted to take care of Ivan and to educate him myself. I needed to surrender myself to it, and I had peace with that. There was no resistance to quitting my career. Not in the slightest. This is the greatest, the most important, job of my life. And the significance of that is not lost on me.

"The joy that you get back from your child, the joy of my son, the happiness that he gives me. The wonder and how amazing he is. That is fantastic. I just adore being his mother."

Ivan has a diagnosis of being on the autism spectrum disorder.

"His sensory processing is different from typical children," explains Lizanna. "Communication may be delayed. There may be behavioural issues there, due to an inability to communicate."

As for any child who cannot speak, frustration is a player in Ivan's life, and in his family's life. What are perceived as 'tantrums' can be an expression of a non-verbal child's pure frustration at not being able to communicate. It is tough on the child, and on the parent.

"He used to be non-verbal, now he is pre-verbal," Lizanna explains, "He has sensory issues such as smells, hand dryers . . . the suddenness of the noise of it, loud noises. He is actually an affable boy. We have learnt that he is open to change as he gets older. He is happy to experience new things. That is when he is well. When he is unwell, he cannot communicate his needs - and then I don't want to be here. He can't communicate about a toothache, or a cold, so how brave he is to endure it without being able to talk.

"He is very empathetic. If he hears a child crying, he stops in his tracks and he looks worried, and I have to tell him about the child being OK. He can hear what you can't hear; he can see what other people can't see."

Lizanna told me that there is a huge sense of urgency when a child gets a diagnosis such as autism. Early intervention is key, and tends to include lots of occupational and speech therapy.

The waiting lists are long, from 18 months to two years, as there are not enough therapists in the public system. The private system is little better. Parents live with a sense of urgency and failure, as they see the opportunities for their child to get stronger disappearing, due to inadequate infrastructure and funds. Valuable time is lost.

It is no wonder that parents worry constantly about their children's futures, about what will happen after they, the parents, die. Lizanna tells me she thinks about it most nights before she goes to sleep.

Parents like Lizanna feel that there is not enough being done to integrate children with special needs into mainstream life. If we did, she believes, we would have a far better society. "We have to learn from them, not them from us," she says. "What are the challenges of having a child with autism? For me, on a personal level, I find I am often feeling helpless. Say when Ivan is upset and he can't tell me what is wrong. And then he is so sad and frustrated. He is such a loving and trusting little boy.

"I say to him, 'I am so sorry; momma is trying to work out what it is you need'. As a mother, that is, for me, very, very hard. It is torture. But he does get the concept that I will figure it out."

Lizanna adds: "On another level, the greatest challenge is becoming a successful advocate for your child. You have to learn to cope with the bureaucracy. Working with the system, how best to navigate it. It is a whole world you have never been exposed to before. I am his voice. I have to stand up for him, talk for him, and make sure that he gets all the rights he is entitled to. It is up to me to do that. It is a matter of responsibility. You are not just a parent enjoying rearing a child. You go to bed thinking, worrying, 'Did I do all that I could?'"

JILL DIFFLEY

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Jill was 15 when she started modelling and continued into her 30s. Now 44, she is married to Mark, and has two step-children, as well as four children of her own. Her youngest, Darcy, is a twin and has Down syndrome.

"I am qualified in childcare," Jill says. "My mother ran a creche and I worked there as I modelled, which was great for me. I was 15 when I started to model for Ross Tallon. He was very good to us [models]. I was extremely shy, but I loved it. I did a good mix of work. I would do a lot of shows and I would do a lot of 'leg work' for Pretty Polly. Also swimwear. I was in the supermodel shows for Brown Thomas."

When Jill was in her 30s, she and Mark had two children, and then she became pregnant for the third time, this time with twins.

"The shock was that there were two of them. I will never forget that first scan; it was hilarious," Jill recalls. "I didn't know then that I was having a baby with Down syndrome. They are fraternal twins, so they are non-identical and were in their own sacs. We joke that she got the designer gene. At the hospital, a male nurse there, George, christened her Diva Darcy."

Right from the start, Darcy defied all odds. The placenta was failing. She was underweight. She was born with three holes in her heart and had to have open-heart surgery at five months.

"Drinking a bottle for Darcy was like running a marathon to us. It was hard to get her to the five-kilo weight necessary for the operation," Jill explains.

The procedure, though common for children with Down syndrome, who can have heart issues at birth, is risky. Another baby, operated on on the same day as Darcy, did not make it.

"When I look back now, I wonder where I got the strength to go through it," says Jill. "Darcy was home after 10 days, but the waiting of five hours for her surgery was one of the worst things I have ever experienced."

One of the things about that time which sticks out in Jill's memory is how her husband Mark responded. A hands-on dad anyway, he stepped in and protected Jill and Darcy, and was the one who told her that Darcy had Down syndrome.

"He called everyone, friends and family, and told them, too. I remember my brother came in a few hours later with loads of balloons with 'twins' on the front," Jill recalls.

Jill's brother treated Jill's baby Darcy like any other baby - she was to be celebrated. Unfortunately, most of us go silent when we hear that a baby has challenges, which makes it harder again for their parents.

"Her heart was the big worry," Jill says. "Once that was sorted, I began to get into coping with the Down syndrome. I am constantly reading. There is a Facebook page by Irish mothers, called 'Raising a child with Down syndrome'. It is private, so you have to know someone who is on it [to get access], but it is a great support, say if you had a worry."

Jill, like Natasha, Lizanna and Vivienne, is trying to get as much support for her child as possible. She is lucky, she says, to be in the Saint Michael's House catchment area in Ballymun, where there is great support. She realises many people aren't so lucky. "There aren't enough speech therapists and occupational therapists available. We were lucky we didn't need an occupational therapist, but others aren't," she says. "There aren't enough SNAs [special needs assistants] around the country. Darcy has an SNA in pre-school due to Saint Michael's. That SNA supports Darcy, but she also stands back and gives her independence. It is all about catching and training children when they are young; the earlier the better. What is the point of diagnosing children if they aren't going to get support?

"I do worry about her future. You see children who go to secondary school and third-level education, but they can't get a job after it. Darcy is bright; I do feel she will go far."

Recently, Jill has been doing some modelling again, and last year she worked with her husband Mark Wright on their new business, The Seafood Bar by Wrights of Howth, on Dublin's Dawson Street.

"It was very exciting to be involved with the project," Jill tells me. "I enjoyed the challenge."

But life is all about home for Jill. She relishes Darcy's strong character and loves to recount many stories of Darcy's derring-do.

"Darcy is wild, an absolute character. Anyone who meets Darcy, she puts them in a good humour. Her favourite word is 'hug' - I want a hug," Jill laughs. "She would get away with murder if she could.

"My advice to anyone who has just had a baby with Down syndrome would be to take it a day at a time. Try not to worry too much. I know it is the old saying that a child with Down syndrome is a gift - but they really are. Darcy has a brought a lot of happiness and a lot of love to everyone in our house. And divilment."

VIVIENNE DOYLE

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In 1998, Vivienne was working for Aer Lingus when she won Miss Ireland. She spent the next three years modelling and doing television work. She returned to Aer Lingus, where she met her husband, Kevin, a pilot, and they married in 2003. One year later, the first of their four children, Daniel, was born. At the age of three, he was diagnosed with dyspraxia and a learning disability. At five, he was diagnosed with autism. Today, he is 11.

"You can never judge a person. You never know what goes on in people's lives," Vivienne said when I first told her why I wanted to include her in this story. As a mother of a child with autism, she has felt the judgment of people when Daniel can no longer cope with the sensory overload of being in a supermarket, and gets disruptive.

"People look at you like you are a bad parent. But this is my son. He can't help himself. And we need to buy food."

Daniel was a good baby, but a poor feeder. As he got older, Vivienne noticed that he wasn't hitting his developmental markers: not crawling when he should have been, not talking when it was typical to.

"We were very lucky. At that time, to help him to be diagnosed, Daniel attended a special school in Temple Street Hospital, which is now gone, that supported him. They were fantastic with him. He really came on," Vivienne says.

It is the constant refrain of all the mothers of children with additional needs: early intervention vastly increases a child's ability. It gives them the best chance for their future. But accessing resources is getting harder and harder.

Like most parents of children with additional needs, Vivienne's greatest dream would be for Daniel to lead an independent life. But there are little to no opportunities in the workplace for people with additional needs.

Time was, I would meet a person with additional needs working in a supermarket or in a fashion office, but I feel I don't see it as much now.

It is like we are regressing, not progressing, as to the integration of these unique human beings into ordinary life. Where is the hope in that for them, or for their parents?

"I would like to think that he would get to live independently," Vivienne says. "It is something you would wish for him and hope for him, but I am not sure if it will be possible.

"Dan is such a special boy. He makes us laugh at the silliest things. He will say things that are so lovely. He is just a little kid with a learning disability.

"You do worry about what will happen when you are gone. The other day, my daughter said to me that Daniel would live with her. She is already thinking about his future."

When there is a child with special needs, it tends to take over a home. It's very much at the fore of Vivienne's mind. "You worry about your other children - are they getting enough of your attention when one demands so much? My children fight for my hand, but one is always holding Daniel's," she says. "It is hard for the siblings."

When we were in the make-up room on our shoot, Lizanna Kirwan joked that as mothers, they couldn't afford to get sick or die. Vivienne agreed.

"I am tired. Reaching 40 makes you realise that there is only so much you can do. I don't want to come across as moany, but it is challenging. You have to get up, you have to get on, you have to keep going. I have two hands, I have two arms, what I do is all I can do."

In learning about Daniel's needs, Vivienne trained as a special-needs assistant and now job-shares at the local school.

"Having a child with autism gives you understanding and empathy for children with special needs", she says. "You are watching your child and trying to support him in being independent. You are so focused on your family that there is no room for anything," says Vivienne.

"Friends who have children with autism understand that it is a life of constant watching, a constant state of being on guard. That Kevin and I can't just get a babysitter in to mind our children because you can't expect an untrained person to handle the complications of your child. That is just the way it is."

She adds: "You meet, you marry, you have kids. This would put a strain on any marriage. Of course it does. We don't have time for each other. We went out for dinner recently. It was the first time in so long, and Kevin said, 'I can't remember when was the last time we did this'.

"Would I change Daniel? I would, for him. So that he could have an independent life and could go out and play without me. I know many people would say they wouldn't change them for the world. But I would."

NATASHA BYRAM

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At her art teacher's advice, Natasha began modelling when she was 18, and still at school. Now 45, she is one of Ireland's best-known models. She is married to Dave, and they have four children. Her youngest child, Eliot, is aged three and has Down syndrome.

"I studied analytical science in DCU. When I finished, I took the white lab coat off and put on stilettos," Natasha laughs. "I did a lot of TV and a lot of shoots. I worked a lot with Michael Doyle of Peter Mark."

Natasha's first child, Perin, was born when she was 33. "I knew I was ready to be a mum. I had a music career and that had just started to take off when I discovered I was pregnant. But I was very happy to give it up."

She went on to have two more children and life was the usual for a busy mother. "We had the three kids, but I wasn't ready to give away the cots and stuff, yet, so we went for the fourth," Natasha recalls. "When I went in for a scan at 12 weeks, for the first time the doctor asked did I want to take a test for Down syndrome.

"I remember that I went into the room on my own and there was a screen with all the figures that help them calculate. Then I was told there was a two-to-one chance that I would have a child with Down syndrome.

"The room did seem to spin; the numbers were flashing in front of me. It came as a huge shock. I decided that I wanted to know the answer straight away, so I did the CVS [chorionic villus sampling) test. I had to wait four days for the results. There was another risk, too, to the baby, which was fatal. So it was four days not knowing the future of our baby, the future of our family.

"When we got the phone call and were told for sure, I cried and cried and cried for days. We went away to Kerry and I buried my head in books and research. I retreated. I was full of fear, the fear of how it would affect my life, the children's lives.

"Then I met a friend with her little boy with Down syndrome. He was three years old and great. After that, I let out a big breath and realised that it was going to be OK. It was the best day of the pregnancy. I think there needs to be more of that in the medical approach, in hospitals, a lot more of that positivity and sharing."

Natasha told me that after that visit from her friend with her son, she kept apologising to her tummy.

"I was just so sorry that I had responded to the news so badly. I only wish I had had the forward vision that this pregnancy was a celebration. That there was nothing to fear. That Eliot would complete our family in ways we couldn't have imagined. He has softened our edges; he has made us better people.

"But at the time you don't understand these things. You have to live through the experience. But, by the time Eliot came out, we were ready for him."

Now Natasha is the one who invites mums-to-be to meet Eliot, and supports them in understanding life with a child with Down syndrome better, and, hopefully, fearing it less.

"Eliot was in hospital for his first six weeks," Natasha remembers. "He had open-heart surgery at five-and-a-half months and after that operation, Down syndrome just faded out of our lives."

Natasha's sadness about the early days of her pregnancy, the lack of joy she had initially, are in the past.

Today, it is about enjoying Eliot and giving him the best opportunities she can.

"The hardest part of having a child with special needs is the battle to get them what they need, the resources that they will need to fulfil this lovely life," Natasha says.

"I am not a shouter generally, but I have had to become a shouter to get him what he needs. Early intervention is huge for children with Down syndrome, but there are so few resources. We are under Enable Ireland and they have been wonderful. But there aren't enough resources. I am sure it is going to be this way all the way as Eliot grows up.

"I think a lot about what is it he will do after he leaves school. The challenge is to get young adults with Down syndrome into the workplace. I see developments in Italy and in America [such as Tim's Place in Albuquerque, a restaurant founded by a man with Down syndrome]. They see a future for our children.

"But here, it seems there are fewer and fewer opportunities for them. I don't know if it is that people underestimate people with Down syndrome? Or is it that people don't give them the chance? If only they could see what they can do.

"It is a curveball," Natasha says, "and you have a choice. You can drop the ball. Or you can catch the ball and run with it. It is a different life. But it is a good life."

Styling by Constance Harris. Photography by Mike Bunn

Brown Thomas, 86-90 Grafton St, D2, tel: (01) 606-6666, or see brownthomas.com

Melissa Curry, tel: (087) 282-7957, or see melissacurry.com

Niall Tyrrell, 26 Fortescue Lane, Off Lwr Mt Pleasant Ave, Rathmines, D6, tel: (01) 498-3377, or see nialltyrrell.com

Helen Cody, tel: (086) 260-5374, or see helencody.com

Louise Kennedy, 50 Merrion Sq, D2, tel: (01) 662-0056, or see louisekennedy.com

Photographed by Mike Bunn, using Olympus OMD EM1

Assisted by Paul Cabena Styled by Constance Harris

Make-up by Paula Callan, Callan & Co, 1 St Mary's Road, D4, tel: (01) 668-0060

Hair by Michael Doyle, Peter Mark, Stephen's Green Shopping Centre, D2, tel: (01) 478-0362, or see petermark.ie

Photographed at Castletown House, Celbridge, Co Kildare. For information on events and opening hours, tel: (01) 628-8252, or see castletown.ie

Our thank you and appreciation to Castletown House, Caoilfhionn Murphy and all the staff for their kind assistance and support of our shoot

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