Seeing their lives change before your eyes

When children are registered blind, it can be a shock for the entire family, but there is support out there

MAYA FLYNN was six by the time her parents discovered she was visually impaired and, as soon as they heard, they realised her little brother had the same problem.

Both Maya, now aged 10, and seven-year-old Cormac had been born with enlarged hearts but this was sorted with medication and, apart from annual check-ups, their mother, Eithne Walsh, thought the problem was behind them – until an eye test on Maya when she was in first class revealed a condition so severe she had to be registered blind.

“Friends with kids who can see don’t actually believe you can have two kids who can’t see and not notice,” says Walsh, whose oldest child, Ailbhe (12), has not had any such problems.

It is the younger children’s distance vision that is affected, whereas their peripheral vision is quite good so their mobility is good, she explains. They can see for about six feet, but their central vision is gone, so they miss a lot of detail.

“A small child works very close up but as they go through school it suddenly becomes more noticeable. Maya couldn’t see the board.”

Once Walsh got the news, everything fell into place – “that’s why she couldn’t do seatbelts, that’s why she wouldn’t do zips. I was on a parenting course at the time thinking Maya was getting very stubborn.”

Their son was only three but, “as soon as she was diagnosed, I knew Cormac’s eyesight was worse because he was showing a lot more caution walking around”.

It was clear the two children had a genetic condition – “two things wrong, more than likely a syndrome, but they have never found what it is, thank God”. Many of the identifiable syndromes involving heart and eyes are very bleak, she explains, so it is good they don’t meet those criteria.

Walsh is glad she didn’t know earlier. When Cormac was born they had just moved to a house in Wicklow town with a big, hilly garden and “all sorts of death traps”.

“I didn’t know they were visually impaired and they learnt to navigate all that very young and I think that is why their mobility is very good. If I had known, I might have been ‘oh be careful of this and that’. And you are not doing them any favours because they need mobility for life.” Both children enjoy athletics and last summer Maya did a sailing course.

The Flynn children are just two of the 1,200 children aged under 18 who are registered with the National Council for the Blind of Ireland (NCBI). There would be many other affected children – for whom vision loss is not their primary disability – that the charity would not have contact with.

Diagnoses come at different ages and the causes and severity of vision impairment vary, but in all cases NCBI’s initial work is usually helping parents come to terms with what it means for their children.

For Walsh, it took about a year, she says, to get over the “real shock”. She now advises parents of newly diagnosed children: “It will never be as bad as you first think – but you do go into a very dark tunnel of imagining the worst. The thing with blindness is you close your eyes and you can feel blindness. It is a lot of your own baggage you have to get past.”

They were the same kids running around as she had had the day before she got the information, she points out. Her husband, James Flynn, took the news much more in his stride and their different reactions were beneficial, she says. “We both didn’t need to be immobilised with fear and yet, because I went into it more, I probably do support them more – which is great because I am the one at home.”

The level of sight Maya and Cormac may have in the future is unknown. However, in her own head, Walsh kept going from “visually impaired” straight to “black blind” – “but that really does not happen to many people, so to manage that fear is key”, she says.

“It is okay to grieve – it is like a little death, of the lives you thought they were going to have. They are going to have a different life and that life is absolutely fine.”

It took her about a year to find Féach, a support group for parents of blind and visually impaired children. Talking to other parents is fantastic, she says, especially those of teenagers who have already gone through the stages her children are at.

However, when she went to their first Féach event and saw children with white sticks, she remembers crying in the car on the way home and saying to James, “I am never ever doing that again.” Now she is the chairwoman of Féach.

After they had been invited on what turned out to be a very successful Féach skiing trip to Austria, “I saw how well the kids were getting on and then I realised it was my stuff,” she says. “I wanted to say ‘I am not going to let it define them’ but what I was really saying was ‘I don’t want to look at this’.”

Andrea Colfer is also glad to meet other parents of visually impaired children when her daughter, Alannah (10) takes part in activities, such as cooking, organised through the NCBI in Wexford. It was a “massive shock” when her second child was born with the rare genetic condition albinism.

She recalls the midwife remarking that she was a blonde and the moment Andrea saw her, she suspected albinism. However, the diagnosis was not confirmed until after an appointment with a consultant in Waterford four months later.

The lack of support in the early stages was the worst time, she says. “They let me out of hospital not knowing what was wrong with the baby but knowing there was something – I had no back-up, no one to ring.”

Living outside Gorey, she knew about the white hair and visual impairment that goes with albinism as a girl in the town, a third cousin of their family, had the condition, so she went to her mother to try to learn more.

“You naturally think the worst – I could not see any good coming out of it, I could only see the bad. I could only think about would she ever have a boyfriend, the debs, you know stupid things.”

Parents in her position need to know where to turn, she stresses. “Somebody should have said this is available, that’s available, ring such and such a person.”

She discovered the NCBI only when Alannah was eight months old. With its support, things began to become a little easier.

“My attitude was that I have two ways of rearing this child – I rear her as a child with very bad special needs or she’s thrown in with the rest of them, and I did the second. She wouldn’t let you ‘mammy’ her now anyway.”

Last December Santa delivered a much-wished-for first “big bike” and Alannah was up and going on that on Christmas morning, “not a bother on her”.

She is coping very well, with supports, in mainstream school – the Loreto Primary School in Gorey. “We have been very lucky, she has got everything she has needed – all her equipment, she has a visiting teacher, she has an SNA and she has resource hours.”

Alannah uses a scanner both in school and at home, which magnifies the text of a book onto a screen for her to read. She also has a video camera on her desk that can follow the teacher, and the images come up on the screen.

She got a laptop last year and has started typing. “All her exams will be done on laptop,” says Colfer. “Without the technology the child would be absolutely lost.”

However, one downside of evolving technology is that it has decreased visually impaired children’s use of the basic magnifier, says Toni O’Dwyer, a regional manager with the NCBI. They may be highly supported in school with the latest equipment, “but to go to the shop to find custard, you cannot bring the CCTV camera. They also need to learn the skills of living.”

Alannah is keeping up at school; she is quite good at maths but her reading is poor. She has a wobble in the eyes, so it is a struggle to focus on each word.

“I thought about Braille for her but they didn’t really recommend it,” says Colfer. “Braille is quite hard to learn plus they get lazy and won’t learn to read signs and things.”

As Alannah’s mother, she has to be a step ahead and is already thinking about the challenging transition to secondary school her daughter faces.

“I have to reapply for her SNA and her resource. If you sit back at all, they won’t come knocking for you; you have to look for everything.”

Walsh agrees that parents have to “future proof” their children. That is why it is so necessary to take on board the child’s disability – “going through the pain of it and then moving on and helping them”. It is very Irish, she suggests, to minimise their difficulties.

Children, such as Maya and Cormac, who have no obvious physical signs of their problem, are inclined to pretend they can see perfectly well. And parents might want to go along with that but these children are not the same as others, adds Walsh, “and the sooner you come to terms with that, the better”.

"YOU JUST GET ON WITH IT AND DO YOUR BEST"

Low expectations of children with vision loss can hold them back more than the disability, says Toni O’Dwyer, a regional manager with the National Council for the Blind of Ireland.

Its staff tries to pick up where parents are underestimating their children’s capabilities. For instance, children may not be expected to dress themselves, when there is no reason they shouldn’t.

“I think it is easier to achieve that in a family context but the family then has to go out and try to deal with society that has no expectations of their child,” says O’Dwyer, who is based in Limerick.

“I have known children who have gone through school and never been asked a question in their life.”

The attitudes of other people is a concern of Margaret Earley, whose son, Shane (six), is totally blind since birth.

“He is a real outgoing lad,” she says, with no qualms about trying things and she does not think he will let his blindness hold him back. He loves swimming and did a bit of horse-riding during the summer.

“He’s flying. He does not think he is different from anyone else. It is other people maybe who won’t give him a chance.”

She and her husband, Brian, were in “total shock” when Shane, the youngest of three children, was diagnosed as blind due to a rare genetic disorder, Leber’s Congenital Amaurosis, when he was four months old.

“We didn’t know how we were going to cope but you just get on with it and do your best.” At the beginning they found it very hard, even to talk about it, she says. “But now it’s normal and I love talking about him.”

Total blindness has a very significant impact on children’s early development, says O’Dwyer. We learn through vision and they can’t imitate what they see as other babies do.

It is a myth that blind children have naturally better senses of sound and touch, she adds. “All that has to be taught and stimulated.”

Shane is doing very well in first class in a small Co Roscommon school, where he has full-time access to a SNA and a specialised visiting teacher comes once a week.

“We are ‘lucky’, if you could call it that, in that our child is totally blind,” says Earley. “If Shane had any sight, there would be a big fight [for services] then.”

At the moment he is using books in Braille made up by the visiting teacher, but from next year he should have standard curriculum books in Braille.

She and Brian have done a brief course in it, so they can help with homework.

Socialisation is the biggest challenge. “It is hard for Shane to mix. The children at the school are great but he would be slow and they have run off when he is thinking of going.”

Their older children, Rachel (11) and Conor (nine), have play dates and Shane can’t understand why he is not asked to other houses.

Earley knows that other parents would be wary and does not blame them. But her biggest fear is that he will be left out of friendships and activities. “I just hope that will change as he gets older.”

1,200 children aged under 18 are registered with the National Council for the Blind of Ireland (NCBI)

For information, see ncbi.ie and feach.ie