Rearing children can be difficult at the best of times, but it is more so for the vision-impaired

‘YOU NEED eyes in the back of your head” is an exclamation that is often heard from harassed parents of young children. Even for sighted people, tracking exuberant toddlers sometimes seems impossible.

But what if you have little or no sight? How do you cope with minding children and the myriad tasks that come with parenthood?

Aside from the practical problems, blind parents also have to challenge the preconception of them as people to be cared for, rather than as care givers.

Just ask Helen Gray. She lives in Sligo town with her two sons, Conor (12) and Keith (19 months), and she found that as Conor got older, people would say to him, “Oh you’re great, you’re looking after your mum.”

“That used to drive me up the walls,” she says. “I actually confronted somebody in the street once and said: ‘Listen, I am this child’s mother. Do not say he is looking after me. It is putting severe pressure on the child.

“It did affect him because he would say, ‘Mum, am I to look after you?’ and I’d say, ‘No, no, I am looking after you – you help me but you don’t look after me.’”

It is fine, she explains, for people to say to Conor, “You’re a great help to your mum”, but not to regard him as her carer.

“They honestly think blind people can’t do anything. There are things we can’t do obviously. But people overexaggerate – you won’t be able to do this, or you won’t be able to do that.”

Gray (38) has been blind all her life due to an eye condition resulting from her premature birth. She lives on her own with the two children, but has a home help for about an hour a day provided by the HSE.

“She would feed Keith his breakfast, although I can do it myself, but when she’s there I’ll let her do it.

“I can spoon feed him myself, change his nappy, change his clothes,” she explains. “Sometimes if he has a bottle and he throws it around, I can’t find it. I would have to wait for someone to come in to ask, ‘Did you see a bottle?’”

She remembers when Conor started crawling and walking, she followed him around the small bungalow. “I would make sure I had nothing else to do in the house when he wasn’t in bed.”

Her husband and father of Conor, Martin, died suddenly in 2002 and while she is engaged to Keith’s father, Frances, they live in separate rented accommodation.

“Frances comes in every evening from work and stays until 11pm,” she explains. “He is very much involved with the two boys’ lives. He is Conor’s taxi service!”

Not being able to drive is the big impediment which visually impaired parents identify when reflecting on how their disability affects family life. Gray says there is not even a buggy available which can be used in conjunction with a cane.

When Keith was small she transported him in a front carrier. “I have a backpack now and he’s heavy in that. But if I really have to go somewhere I just have to put him into it as he is too young to walk .” She uses wrist bands attached to his and her wrists for short walks up the road.

For Caroline Quinn (43), who lives in rural Co Donegal, not being able to drive “is a killer”. It is all the more frustrating because she used to drive until her eye sight deteriorated so much she had to stop at the age of 34. The family car is parked beside the house most of the week as her husband John uses a van for his work.

Originally from Derry, she has no close family around to help with their two children, Cormac (7) and Kelly (3). She would be lost, she says, without the help of a personal assistant provided by the HSE five mornings a week.

“She will prepare the vegetables and do the ironing or I will go shopping with her,” says Quinn who has no central vision due to presumed ocular histoplasmosis, an eye disease. She manages at home alone with the children in the afternoon.

Kelly is a “busy child” and Quinn, whose sense of sound has “definitely improved” since her sight loss, must keep a constant ear out for her. “If I can hear her, I know everything is all right but if she is quiet, I know she is up to something.”

Cormac is dropped to the door of their home outside Glenties by the school bus at 3.10pm and she can help with homework by scanning a page into a computer, which will talk the contents back to her.

It upsets Quinn that she has never been able to see the faces of her children. Recalling the moments after Cormac’s birth in Altnagelvin Hospital in Derry, she says, “I knew there was a baby in my arms but I could see nothing.”

She had never held a newborn baby before and was very nervous about the prospect of looking after one. “But the doctor said to me, ‘When it comes to your own, the nerves will all leave you’, and it is true.”

During her first pregnancy she did not seek accessible material to inform herself about labour and could not attend antenatal classes.

“What ever happened happened. That’s the best way I think!” she says with a laugh.

Gray did go to antenatal classes when she was expecting Conor, but cannot remember any audio pregnancy books being available locally. She scans printed material on her computer which converts it to audio for her, but she prefers listening to tapes.

Among other aids she has is a “talking thermometer” to take the children’s temperatures, but giving them medicine before they can take it off a spoon has been a problem.

“They have syringes, but you have to put the syringe into the bottle and pull the medicine up – you are not too sure if it is in it,” she explains.

Motherhood has transformed her life. “I absolutely love children. If I hadn’t got my children, I wouldn’t have a life. I couldn’t manage life without them.”

But she is clearly frustrated at the lack of employment opportunities for people with sight loss. After becoming a mother she applied to do a childcare course but was told that it was not possible because it involved too much observation.

Gray was only six when she was sent from her Offaly home to be a boarder at the School for the Blind on Merrion Road in Dublin. She then did a telephony training course in Sligo and became a switchboard operator at the Department of Education in Athlone.

“I feel people think I am not capable of going out into society or doing any kind of mainstream employment. The only job I did was work on the switchboard and I don’t want to go back to that,” she says.

“I would love to work in a radio station and I love music. I don’t know what I am capable of doing until I get out there and nobody has given me the opportunity.”

She has no family in Sligo and does not have the money to go out, but she has started attending a gym once a week.

“I feel I am knocked back when I go out into the real world. Only for the two children, I think things would be a lot worse for me,” she says.

“There are days when I get a bit depressed and I have to say, ‘No Helen, you have two children, you just have to keep going’.”

swayman@irishtimes.com

SUPPORT SYSTEMS: A HIT AND MISS AFFAIR

THE AVAILABILITY of information and support for vision impaired parents, as well as for sighted parents of vision impaired children, is very hit and miss, concludes a new report compiled by the National Council for the Blind of Ireland (NCBI).

A range of parents were interviewed for the second in a series of archive projects, which it will publish shortly.

“The ease with which advice and expertise can be accessed would seem to depend on the accident of geography and on the particular individual professional that one meets. This can hardly be described as a support system,” comments the final draft of the summary report, which was written by Shirley Spendlove.

It is clear that disability causes significant additional costs “which in turn causes hardship for some families and has the effect of increasing social exclusion”.

The report adds that lack of awareness and understanding of disability issues by professional staff in health, education and social care professions, referred to throughout the interviews, indicates an urgent need for disability awareness to be built into professional training.

WATCHING BRIEF: 'IT IS WHEN WE ARE OUT THAT WORRIES ME'

BUSY BEACHES are “an absolute nightmare” for Joanne Deane (32) who has low vision. If her three children move more than a few feet away, she cannot not see them.

Her habit of putting very distinctive clothing on them is not a runner in these circumstances. “You can’t put a bright red coat on a child on a sunny beach, so I get really nervous. They all look the same. They all have swimsuits on; there is nothing to distinguish them.”

Before they went on holidays to a mobile-home park in France last year, she bought tags to put on Cillian (11), Darragh (4) and Cormac (3) so that if they went more than 20ft from her, an alarm would sound.

However, her husband, Derek, “cracked up laughing and said, ‘They are never going to be within 20ft of us at any stage, not if they are going to have fun at all. Don’t you dare put those on them’.” So she made him promise that he would watch them all the time and the tags stayed in their boxes.

She has never had any problem keeping track of the children at their home in Wexford town because “I know every inch of my own house. It is when we are out that worries me”.

Deane’s eyesight started to deteriorate at the age of nine due to macular dystrophy. “I have peripheral vision but not much central vision,” she explains. Neither of her parents suffered from the genetic condition and their first five children were all perfectly sighted, but it affected the last three.

Deane had been told years ago that the chances of any of her children being affected would be very slim, but she had her eldest boy checked last year just to make sure. “If I had thought at any stage that there was a reasonable chance of passing it on, I would have reconsidered having children. I would not have liked to have passed it on.”

She works full-time as a switchboard operator for the Department of Agriculture in Johnstown Castle, Co Wexford, while Derek, a former construction worker, is currently studying arts at UCD. Most people Deane meets don’t realise she has bad eyesight and she avoids telling them unless she is going to encounter them regularly.

“Sometimes when people find out, they do treat you different,” she comments. She also hates the questions that normally follow, such as, “Do you not wear glasses?”

The biggest issue for Deane due to her sight loss is not being able to drive. “I would always have to live in a town.” They have a childminder coming into the house because there is no creche within walking distance.

Derek does most of the cooking, but more by choice than necessity. “I can cook fine,” she says, “but I can’t read the recipes.”

She cannot do the grocery shopping alone because she can’t read the labels or the prices. So Derek normally does it, but sometimes she brings Cillian to the supermarket.

“When he started school he was much more advanced than the other children because he could read very well.” She attributes this to her early teaching of the alphabet; if they were shopping, she could pick up a jar of sauce and ask him would that go with chicken or beef. “He could spell the word for me; numbers as well. I would get him to tell me the price of things.”

Her eldest son “picks up a lot of slack for me”, she says. “When I come home in the evening and I am opening letters I would often throw them to Cillian and ask him to read them to me as it’s quicker than my magnifying glass.”

She can’t read the children bedtime stories. “My son Cormac asked me last week could I read him a story because his dad does and I said, ‘I can’t because I can’t see the print’, and he said ‘I can’t read either’.”

Has her sight loss made her feel she is missing out on life? “If you think too much about it, you would be miserable,” she replies. “I know if I was fully sighted I would be capable of going to college and a lot of things I would like to do but I don’t go down that road.”