Science was one subject that Ann-Marie Byrne reckoned was out of the question for her daughter, Keisha, when she started secondary school.
The mother's fear of chemicals and Bunsen burners in the lab was understandable considering that her daughter was born blind, due to under-development of the optic nerve. But during the first nine weeks of term, when first years at St Brendan's Community College in Birr, Co Offaly got to try all subjects before deciding what to study for the Junior Cert, it became apparent that Keisha liked science.
The teacher asked Ann-Marie if it was okay if Keisha chose it because she was clearly very interested. “She kept it on and is doing brilliantly in science and this is the one subject I struck off from the start,” laughs Ann-Marie.
Schools “have more courage” these days when taking in blind or visually impaired children, says Joan Curran, a recently retired educational psychologist. She saw big changes as the integration of pupils with disabilities into mainstream education became Department of Education policy in the late 1970s.
When Curran, who worked with the National Rehabilitation Board, was first sent into St Mary's School for the Blind in Dublin in the mid-1970s there were 100 girls attending, many of them boarders. By the time it closed in 2002, that had dwindled to six.
"It was quite rapid really, the change when it happened," she says. While ChildVision, the National Education Centre for Blind Children, continues to offer specialist education, from babies right up to 23 years of age, most parents want their blind or visually impaired children to go to school locally if possible.
Mainstream schools have, on the whole it seems, embraced these children. But there are concerns that while the academic aspect is usually well looked after, life-skills training and networking with similar peers, which were an integrated part of specialist education, can fall through the gaps.
"There are times when I have been so exasperated with mainstream, I have said I honestly wish they were going to a school that could look after all their needs," says Eithne Walsh, the mother of two visually impaired children in Wicklow and chairwoman of Féach, a support group for parents of blind and visually impaired children.
“They are in a system designed for the sighted majority, trying to make their way as a minority. You are just a victim of how much expertise a school has,” she points out.
Lack of experience
The approximately 1,300 children aged under 18 who are registered with the NCBI are scattered around the country, so many schools have no experience of their needs. And once one child has been through a school, it may be many years until another with a similar disability is enrolled again.
So the schools are heavily reliant on the knowledge and expertise of the Department of Education’s team of 14 visiting teachers assigned to blind/visually impaired children throughout the Republic. But, carrying a caseload of anything between 70 and 120 children each, visiting teachers are very stretched and their priority is to ensure these children can access the curriculum, whether through Braille and/or a range of other technological devices, depending on the degree of disability.
A review of the entire visiting teacher service that was published in 2014 concluded that it was “highly regarded” but needed to evolve to meet developments in special needs education.
A review of caseloads and greater emphasis on outcomes were among the recommendations.
The national sight loss organisation NCBI, which has a countrywide network and assigns a community resource worker to every child registered with it, provides life-skills training and organises opportunities for meet-ups. But the level of support for families varies from area to area.
“I see the Government is giving lots of money to various things but there is no joined-up person looking after the kids,” says Walsh. There are lot of professionals dealing with the children but, in her opinion, parents are left to pull it all together.
For instance, when her daughter Maya Flynn was in fourth class (the stage her son Cormac is at now) Walsh sat down with the resource teacher and asked her to use that time to start teaching the skills she was going to need in first year at secondary school, including practical things like handling money in the school canteen.
Generally these children manage fine at primary level, “which lulls everybody into a false sense of security”, says Walsh. For visually impaired children like hers, who read using magnification, they have to learn to learn (stet) by listening to audio texts because, as the workload increases, their eyes get far too tired, she explains.
Cutting resource hours is also a bone of contention. Walsh has seen her children’s time reduced from three-and-a-half hours a week to two hours 40 minutes. A proposed move to a general allocation system could see a further cut, she adds.
For blind children who use Braille, there is a lot to be packed into their weekly three hours’ resource teaching, from learning the tactile language to mastering technology and catching up on aspects of subjects that they find difficult.
Non-academic aspects
The academic part is all too often seen as the outcome of education, agrees NCBI regional manager in the Mid-West,
Toni Dwyer
, “whereas the non-academic aspects of it have to be of equal importance to children with disability”. It is how the whole approach is co-ordinated that needs to be looked at, she suggests.
Due to technological advances, there is no reason these children can’t compete academically but too often, she says, they will exit the school system without the social or life skills to be on a level playing pitch with their peers.
The NCBI tries to raise the expectations of what blind or visually impaired children can achieve among all the adults around them – both at home and at school – so that they will be pushed to reach their full potential. Parents, quite understandably, tend to be over-protective and schools may make too many allowances.
Tracey Grant, whose first child, Keri, was born blind, tries to strike a balance between protecting her and encouraging her independence now she is a teenager.
“It is really, really hard,” she says. “I would be the one who would do everything for her whereas my husband, Michael, would be more ‘she has to do it herself’ and he’s right but it is hard for me, when I see her struggling, not to just get up and help.”
Now in second year at Scoil Mhuire in Buncrana, Co Donegal, Keri (13) has an amazing group of friends, says Tracey. “You would leave her up the town with them and trust that they would not forget about her.”
Tracey was only 16 when she gave birth to Keri, whose optic nerve didn’t develop. She registered her with the NCBI and “they are just always there to help. I don’t know what I’d do without the NCBI.”
Both Keri’s primary school, Buncrana Scoil Íosagáin, and her current school have been brilliant to her, she says. Another blind pupil went through both schools some years ago, which probably helped.
“I have heard some schools just aren’t that great; we are lucky to have the schools around here that we do – they’re amazing,” says Tracey (30), who also has a nine-year-old daughter, Zoe, and baby Liam born in October.
She is full of praise for the visiting teacher who set everything up for Keri at secondary school and drops in once a week to plan her work.
Like most totally blind children, Keri uses traditional Braille alongside digital Braille through a device called the Braille Note. This is like a small laptop on which she can type notes in Braille and also read material back in Braille.
It also allows her to email work in ordinary text documents to her teachers and then she can read the notes they send back through Braille.
“It talks to her as well; she can press a button and it will read out to her what she has just written,” adds Tracey, who also didn’t think science would be suitable for her daughter. However, Keri wasn’t bothered with it either – music is her big passion and one of her subjects for the Junior Cert. She has to hear a song on the radio only once or twice before she can pick out the tune on the piano in her bedroom at home in Clonmany, about 20 minutes’ drive from Buncrana.
Over-protective
Ann-Marie is candid about how she too tends to be an over-protective towards Keisha, an only child. “She is very rarely away from me.” However, now that her daughter is 15, Ann-Marie says she has been reminding herself a lot lately that Keisha needs to be more independent.
Now in third year at St Brendan’s, where she is studying six subjects for the Junior Cert, Keisha has a full-time special needs assistant and has not encountered any major obstacles.
The school has been great, says Ann Marie, giving Keisha her own room for all her equipment. The only annoyance she has to cope with is the noise in the corridors between classes, to which she would be particularly sensitive.
The principal, Ming Loughnane, says Keisha participates fully in the life of the school, embracing both practical and academic subjects with great enthusiasm.
“She is always positive and cheerful and a pleasure to have in St Brendan’s,” she adds. “Her determination and her ability to overcome difficulties and achieve great results are an example to us all.”
For more information see ncbi.ie and feach.ie
swayman@irishtimes.com
‘I always have that fear, letting her do things on her own’
Keri Grant (13), who was born blind, wasn’t that interested in trying to do things in the kitchen until she started attending cookery classes run by the NCBI, the national sight loss organisation.
“She just loved it – of all the things she ever went to it’s her favourite,” says Keri’s mother, Tracey. The junior masterchef workshops, which were held in Athlone, Co Westmeath, over 18 months, culminated in a finale last September, overseen by celebrity chef Neven Maguire.
They made Cajun chicken and berry pudding, says Tracey, and Keri has since cooked this for almost every member of their extended family back home in Co Donegal.
At the end of the workshops Keri and the six other participants, aged 10 to 17, got to take home equipment, such as talking scales and talking timers that they used in the classes. “That encouraged her to keep it up,” says Tracey, who has always been nervous about Keri in the kitchen at home.
“She was asking me for ages could she make tea but I never wanted her to use the kettle. I was always afraid of her burning herself, so I went off and got her one of those one-cup things and you just press the button and the hot water comes out.
“Somebody else said I should have just let her get used to the kettle because there will be kettles in other places. But I always have that fear, letting her do things on her own.”
Likewise, Ann-Marie Byrne had never let her blind daughter, Keisha (15), loose in the kitchen. “Oh God no!” she says at the very thought, not knowing how she would go about teaching her to avoid burns.
However, since doing the NCBI cookery workshops, Keisha has a lot more confidence, listens a lot more and is better about taking direction, says her mother. “She understands that if you get burnt, it really could hurt. With age she is getting more cautious.
“I let her help me a bit more doing the dinner at home, peeling the potatoes and other odd jobs,” Ann Marie adds.
The workshops were “an opportunity for parents to exchange experiences as well,” says recently retired educational psychologist Joan Curran, “and see that their child can actually do way more than they thought.
“It can be scary to give a child a knife and say ‘cut up that pepper’,” she acknowledges. But they can be taught how to do it safely.
Curran encourages parents of blind or visually impaired children to “get brave” and allow them to do things for themselves.
She urges parents "to try to bear in mind the adult they want their child to be" and to teach them life skills from early on.
"This child can take their turn in doing the dishes too. Most parents know that; it is just hard sometimes to put it into practice.
"I would have seen [blind] adults not able to wash their own hair or take a shower on their own," she adds. "These would be intellectually able adults and you would kind of think they have been landed with a handicap, as well as a disability."
'Her interaction with kids is different from what we are used to seeing' Laura Ubartaite's big worry when her blind daughter Saule started national school was bullying.
“But it never happened and please God it won’t,” she says. “She is very sociable and she loves to chat.
"Her interaction with kids is different from what we are used to seeing, because obviously she understands the world differently, but she loves to be around people." Now aged six and in senior infants, her classmates at Coosan National School in Athlone, Co Westmeath are very accepting of her.
Laura, who is from Lithuania but had Saule here, is happy with the supports her daughter is getting, both at school and from the NCBI.
Although she believes the school was initially very apprehensive about taking Saule, it is “going quite smoothly”.
Language had been a concern but, now in senior infants, Saule is coping well with speaking Lithuanian at home and English at school. She is currently learning to read English only with Braille.
Laura says she knows she is an over-protective mother: “I am trying not to be – but what can you do? She is becoming more and more independent, so I am hoping with time, I will let her go.”
