Publications Archive

Visability, Autumn 1996, 18

Summary: For parents and professionals concerned with education of children with impaired vision

For parents and professionals concerned with the education of children with impaired vision

Editor: Karen Porter

Visability is published termly by RNIB Education Information Service.

The views expressed by contributors may not be those of RNIB.

ISSN 0961-9879

Focus on: eye conditions

Editorial

Welcome to the Autumn issue of Visability, which this term focuses on eye conditions. We have tried to include articles on those conditions which we are frequently asked about, as well as less common ones.

If you would like us to cover other eye conditions in future issues, please let us know! This issue features an article by Melanie Godridge, who describes her experiences as a parent finding out her son has retinopathy of prematurity. Chris Harris, consultant ophthalmologist at Great Ormond Street Hospital provides medical information about nystagmus. Anophthalmia has been in the headlines again with the recent court case in America and with this in mind, Pam Henderson, peripatetic teacher in Lincolnshire describes her involvement with the media and with parents of anophthalmic children.

A sufferer herself, Wendy Hughes reports on the little known condition Stickler Syndrome and how the diagnosis has changed her life. Lastly, a list of useful support organisations for specific eye conditions is also included.

Our curriculum article features a report on the Leisure Reading and Resources Group by Caryn Welsh. On the subject of leisure, we sent out some Let's go roving reporters to review recent exhibitions and performances and a volunteer describes her experiences on an RNIB Vacation Scheme.

The Spring issue will focus on careers and employment issues. Whatever age your visually impaired child, you are likely to be concerned about possible future careers. We hope to include case studies of different careers, where to go for advice and vocational training. Please do contact me if you would like to contribute a piece on this or other topics.

Karen Porter, Editor

Viewpoint: Where you have your say

Supporting parents

Last summer, RNIB carried out a small study to find out what help and support parents feel they need when they are first told their child is severely visually impaired. Two RNIB workers interviewed the parents of 21 visually impaired children. Parents were asked to talk about their own experiences and ways in which they thought support systems could be improved to help others in the future.

"She spun him round, flashed lights in his eyes and said - this child is totally blind - and that was it -just like that. She said we'd have to wait two months for it to go through red tape and she would notify us when the doctor had given his permission for us to be seen by the specialist .... She just said - this child's blind -just three words - this child's blind'.

More than half the parents told us that they themselves had first suspected their child might have an eye condition. Whilst some had been taken seriously by their GPs, others had been virtually ignored and had to fight to get a referral to an eye specialist, after which they had differing experiences.

'I'll tell you how I felt... I felt like I was bothering people and annoying people - that is exactly how I felt. I was apologising while I was asking questions ... I felt too keen really'.

For all parents though, memories of the moment they had been told that their child had a serious visual impairment were still very vivid. It was inevitably a traumatic time, but whilst some had experienced insensitive and sometimes callous treatment, others felt that the consultants involved had done all they could to lessen the trauma.

Experiences which helped lessen the trauma included the following: quick referrals; being respected and listened to; being treated like 'people'; the sensitivity of the consultant; being given clear explanations about the eye condition; having a relative or friend with them; being told exactly what was happening; being given privacy and time and non-obtrusive staff.

"We were actually told in a quiet room but when we went back on the ward by his cot that's when they put the screens round. Basically they let us have time to ourselves - they didn't come and ask if we were all right all the time - they didn't pester us, they just left us'.

Suggestions for improved practice included the idea that there should always be someone to talk with who understood about eyes and the eye condition; a follow-up appointment, about one week later, should be offered; and there should be written information for them to take away and look at in their own time.

None of the parents had been given written information at the time of diagnosis, but more than half thought this would have been helpful. What they had wanted, but not always got, was clear, simple and honest information. A number of parents suggested that there should be a package of information they could dip into. The package should contain information about eyes; the eye condition and relevant contacts; child development and information about benefits and local services. For those who had difficulties absorbing written information, video and audio tapes could be useful.

"There should be some sort of organisation that steps in - our initial reaction was total shock and what we needed was a card with a phone number saying 'ring us'. I mean, I did have the ward sister's number but she wasn't a specialist. I needed someone to say "look don't worry about schools, there's this, this and this" - which I've since found out'.

Most of the parents felt that access to someone with counselling skills, practical help and support and contact with other parents would also have been very helpful to them. The idea of having a 'key worker' and access to child development centres were also popular.

RNIB has since been considering the best ways to take the research forward to ensure that support for parents does improve in future. As part of this, we are setting up a multi-disciplinary group of professionals and parents to work together to develop and disseminate guidelines for good practice.

Issy Cole-Hamilton, RNIB Children's Policy Officer

The report, 'Taking the time - telling parents their child is blind or partially sighted', is available for £7.50 (or free to parents) from Issy Cole-Hamilton, RNIB Children's Policy Officer, 224 Great Portland Street, London WlN 6AA Tel: 0171-388 1266. A short, free, summary is available from the same address.

News

Insight into eyesight

Boots Opticians have launched a new 'Insight into eyesight' teaching pack for primary schools. The pack comprises a teacher's workbook and 16 themed work cards. Themes include how the eye works, fields of vision, colour blindness and eye safety. Written specifically to cover study areas of Keystage 2 of the National Curriculum, it is designed for teachers of health education, science, technology and art. 'Insight into eyesight' is free to teachers, for a copy please call Julie Wilson at Boots Opticians on 0115-949 3666.

Children's eye safety spectacles

Researchers at the University of Greenwich found that the type of eye protection for children in schools is inadequate, as it is designed for adults. Together with Iles Optical, they have developed a range of safety spectacles especially for children. There are 3 types, costing from £1.65 to £3.50 available from Safety Association for Education, University of Greenwich, Avery Hill Campus, Mansion Site, Bexley Road, Eltham, London SE9 2PQ. Telephone 0181-331 9431.

New IPSEA Coordinator

The Independent Panel for Special Education Advice have appointed a new coordinator for the Free Representation Service. This supports parents in preparing their appeal to the SEN Tribunal, advises on additional evidence, witnesses, presentation of case etc. The service needs to recruit more volunteers from both parents and professionals. We welcome enquiries for a 2 day training course this Autumn. Please direct all enquiries to Free Representation Service, 31 Lightwoods Road, Bearwood, West Midlands B67 5AY. Telephone 0121-240 3007

New audio described videos

RNIB has doubled its range of audio described videos. Current titles for children include the Disney classics, The Lion King (£14.99), The Fox and the Hound (£15.99) and Jungle Book (Live action version) (£10.99). Forthcoming releases will include Pocahontas and Toy Story. If you would prefer to rent an audio described video, then RNIB has a bargain for you! For just £2.50 you can borrow an RNIB video for up to 2 weeks (sent to you, postage free). Call RNIB Customer Services on 0345-023153.

Cone dystrophy fact sheet

Sense Scotland have recently produced a fact sheet on Cone dystrophy including medical information and advice on how to help. It is available from Sense Scotland, 8 Elliot Place, Clydeway Centre, Glasgow G3 8EP. Telephone 0141-221 7577.

New catalogues from RNIB

RNIB has recently published two new catalogues for parents and teachers of visually impaired children. Both are enclosed with this issue of Visability.

RNIB and BTHA have brought out the new 1996/97 Toy catalogue, which contains over 100 toys - more than ever before! Notable additions include the 'Action Man supersoaker', a powerful waterpistol capable of soaking unwitting adults at twenty paces, and 'Chicken Limbo', a fun physical game of limbo involving a raspberry blowing chicken and very amused children!

The new Schools' Catalogue contains many useful products for use in schools and at home as well as information on services available for children. It will prove invaluable to both parents and teachers who have a visually impaired child in their classroom.

For additional copies of either catalogue, please contact Suzy Wallis at RNIB Education Information Service on 0171-388 1266.

Plan: People with Leber's Amaurosis

Network Do you have this condition, or does your child have it? Plan is being set up to create a network for shared information about this form of blindness. Recent research has yielded some information about pre-schoolers, but what about children with Leber's Amaurosis in schools and later life? What learning difficulties are encountered? What is your experience of professional approaches to this condition? For more details, please send an sae to Dorothy de Val, 46 Blandford Avenue, Oxford OX2 8DZ.

Counted the shopping days to 25 December?

Get Christmas stocking for exciting ideas for children and teenagers, including: toys, games, letter from Santa, Christmas books, five new braille magazines, talking alarm watches and other new products Christmas entertainment, including pantomimes around the country and films to buy or rent from RNIB's range of audio-described videos.

Order your free print or braille copy of Christmas stocking now from RNIB Customer Services, PO Box 173, Peterborough PE2 6WS Telephone 0345-023153.

Dear Santa....

If you are organising a 'letter to Santa' class, and some of your pupils would prefer a reply in braille, large print or on cassette, then RNIB can help. We are helping Santa by collecting all children's letters written in braille,. large print or on cassette, and sending a reply back in whichever format is required. You can send the letters together and ask for replies to be sent in one parcel back to the school, to be given to the children in class. If you prefer, Santa's reply can be sent to the child's home address. In either case, each reply from Santa will be personalised. Send Santa's letters to RNIB, PO Box 16, Peterborough PE2 6WS no later than Friday 13 December. Please ensure the child's name and home address (if appropriate) are included and whether a braille (grade 1), large print or cassette reply is required.

Focus on eye conditions

Anophthalmia and microphthalmia - the search for an answer

Being born without eyes, the condition termed anophthalmia, has recently hit the headlines again. Pam Henderson, Peripatetic teacher in Lincolnshire, gives some background to the condition and describes her own involvement with parents and the media over the years.

Seven years ago, I began to be concerned about the numbers of visually impaired children in the rural areas of Lincolnshire. I collated information and statistics and began to try to construct common factors between the children affected.

In 1993, Mike Paduano, a reporter from the Observer newspaper in London heard of my concerns and the support group which I had formed in this region called VlPS (Visually Impaired and Parents Support). This is a group for all visually impaired children and their families - amongst whom were those with microphthalmia and anophthalmia. I was faxed an extract of a report about a piece of research carried out in the USA indicating that rats, heavily exposed to a particular fungicide, produced offspring which were either anophthalmic, microphthalmic or who had other eye abnormalities.

After reading this, I questioned whether children in Lincolnshire could have been similarly affected due to exposure to a chemical. The same fungicide as that mentioned in the extract was, and still could be, used by farmers on agricultural or fruit crops. Indeed one of the parents, a farmer, had well recorded evidence of when he himself had used this particular fungicide. At meetings, finding conception dates from a room full of parents has caused considerable humour! I had very soon discovered that birth dates were of little relevance as not all the children had been born full term.

After the release of the Observer article in 1993 there was mayhem. Demand for more information took me into ophthalmology books galore. However, of the books I used, only one book made mention of anophthalmia and that was to link it with Rubella (German measles in pregnant women) (Martin-Doyle and Kemp 1975). Some geneticists have linked rare syndromes they are researching with microphthalmia. And, in the seminar extract from the 1994 Partially Sighted Society conference, Professor Fielder (1994) is quoted as saying that, 'the major causes of visual impairment in children are associated either with birth or during foetal life'. He further states that, 'major causes of visual impairment are now genetic disorders, neurological disorders and malformation.'

As parents from all over the country began telephoning me for more information, and indeed from different countries, I felt that not enough was known about the actual causes of anophthalmia and microphthalmia (the latter condition was mentioned in clinical ophthalmology books - but not the former). I could find little medical research that had been carried out with regard to any possible connection with chemical exposure during foetal development. Lobbying of the Government therefore began. On behalf of the hundreds of families who had contacted me I wanted an answer! I made many trips to London to meet with other parents of children similarly affected. A meeting with Lord Ashley of Stoke and eventually at Whitehall with Baroness Cumberlidge resulted in a question being tabled in the House of Lords by Lord Ashley. The response by Baroness Cumberlidge, who spoke on behalf of the Government, was that a Research Project, funded by the Government, would be carried out to investigate the causes of anophthalmia and microphthalmia. (Although the research has begun, no report of its findings have been made available to my know!edge). My first aim had been achieved, now perhaps we will find out if this chemical had interrupted foetal development and caused all these children to be visually impaired.

My second aim, to bring together all parents of children that had either anophthalmia or microphthalmia went equally well. With the backing again of the Observer newspaper and Mike Paduano, I arranged a national meeting of all parents and children at the School of Agriculture, DeMontfort University, Riseholme near Lincoln.

Many parents met others for the first time. It was very emotionally charged, as had been other meetings within Lincolnshire, as parents repeated the same, or similar stories. One set of parents had been told that their little boy with monocular microphthalmia was a 'freak of nature'. Others, that there was no genetic reason for their child's bilateral anophthalmia, others still, 'it must have been something you did during pregnancy'.

The overall picture was of parents desperately wanting to know, 'what caused my child's visual impairment?' I firmly believe that parents, in the initial period after diagnosis, do not receive sufficient information, help and support. For those parents who are known to me, I have a set procedure which I devised to guide parents into acceptance and bonding with their new baby - my prime aim being to show parents their child first, and then deal with the visual impairment, rather than focusing on the visual impairment Which after all is only one part of the whole child.

The meeting was a huge success and led on to the forming of the National Group known as MACS (Micro and Anophthalmic Children's Society). This is run by parents of anophthalmic and microphthalmic children nationally VIPS, my own group, continues to meet, encompassing all visually impaired children (including MACS children) in the region. The fight for answers goes on - questions are still being asked, children and parents still contact me and I wait, along with hundreds of others for answers to the question - 'what caused my child's visual impairment?'

picture of anophthalmic and microphthalmic children

    Picture of anophthalmic and microphthalmic children

Anophthalmia

Anophthalmia is the term used when there is a total lack of an eye, indicating some outside interruption during intrauterine foetal development very early after conception. Anophthalmia may be monocular (affecting one eye) or bilateral (both eyes). Obviously there is no sight and therefore no treatment can be offered. Cosmetically, however sockets can be measured, moulds taken and artificial eyes (matched with parental or sibling eye colouring) fitted.

Some children with anophthalmia have also malformed sockets or partially sealed facial bones which further hinder fitment of artificial eyes. Many consultant ophthalmologists fit sponges into the empty sockets of small babies whilst others prefer to wait until the child is old enough to tolerate an artificial eye.

Sockets can require cleaning and some parents have to be helped and taught to overcome their own fears about empty eye sockets. These fears are often exacerbated by media representation of eyes and eye sockets.

Microphthalmia

Microphthalmia is commonly called small eye syndrome. Most of the children known to me are effected in one eye. The eye is obviously reduced in one eye. The eye is obviously reduced in size and again according to my statistics, is blind with no vision at all. However, in Lincolnshire there are children who have bilateral microphthalmia with resultant extreme reduced vision. These children are all registered blind although all have some residual vision. One child had such a small eye that it was removed and an artificial eye fitted. Other children have shields made which cap over the microphthalmic eye – fitted for purely cosmetic reasons. I have found that children who have one microphthalmic eye vary in their reactions to it – some hate their small eye, others seems to be able to accept it, only questioning why or how. Most children become more aware of their visual impairment once they begin school as other children soon point out the difference. I believe it is important to allow children to talk through their questions and I am always available to help them.

Fact file: anophthalmia
  • The US chemical company DuPont produce benomyl (brand name Benlate), the fungicide that has been linked to cases of micro and anophthalmia
  • The chemical was used on fruit and vegetable crops and is still being used
  • Animal experiments have suggested a possible link between benomyl and anophthalmia (see British Medical Journal, August 1993)
  • Yet to be conclusively determined is whether the chemical interferes with the development of the eyes in children whose mothers are exposed to the chemical during pregnancy. Dr Vyvyan Howard, Senior Lecturer of Department of Foetal and Infant Toxicopathology at Liverpool University contends that it is proven on the ‘balance of probabilities’.
  • Clusters of cases in Britain are known to have occurred in rural areas of Lincolnshire, South Wales, Fifa and near Guildford
  • On average, 15 cases of anophthalmia are reported each year in Britain equivalent to one in 10, 000 births
  • A number of parents have launched the ‘Eyeless babies research appeal’ to raise £30,000 to fund research to prove conclusively whether the chemical would cause anophthalmia
  • The chemical has also been linked to infertility
References

Fielder, AR (Prof), 1994, Paediatric Ophthalmology – Extract from partially sighted society 1994 Conference seminar

Martin-Doyle and Kemp (1975 A synopsis of Ophthalmology, Ch XIX, page 204 – Ocular Signs of general disease, Pub John Wright and Sons Ltd, Bristol

Phillips, CI (1984) Basic Clinical Ophthalmology, Ch 1, page 1 – Embryology, Anatomy and Physiology, Churchill Livingstone – Medical Division of Longman Group UK Ltd

Pam Henderson Peripatetic Teacher, Lincolnshire

Current developments

Research into possible links between anophthalmia and benomyl by public bodies in Britain, such as the Fife Health Board has so far yielded inconclusive results.

However, micro and anophthalmia have recently been in the national news again. A report in the Mail on Sunday described the case of the Castillo family in Florida who have a son with anophthalmia. The mother claims she was exposed to the chemical Benlate during early pregnancy. Jim Ferraro, a lawyer from Miami, took on their case against DuPont and the family were awarded £2.5 million, setting a new precedent. DuPont are now preparing to appeal, claiming the jury's decision was based on sympathy for the child. Soon to come to Britain, Jim has agreed to take on cases on a 'no win, no fee'basis and it is hoped that cases will be lodged by the end of this year.

In addition to the cases of anophthalmia in Lincolnshire, between 1981 and 1993, 27 children with micro or anophthalmia were born in Fife, Scotland. Whilst in 5 of the children, the condition was found to be genetic, 22 cases are left unexplained. Benomyl type fungicides were used ten times as much in Fife compared to the rest of Scotland. Fife Health Research Agency are conducting further research.

Sources:

The Mail on Sunday, 18 August 1996

The Tampa Tribune, March 1996

MACS

MACS, the Micro and Anophthalmic Children's Society was formed in 1993 and is run by 6 unpaid volunteer parents who all have children suffering from these conditions.

MACS became a registered charity in August 1994 and have Anne Diamond as Patron. We have approximately 154 families in our Support Group.

Aims

Discovering that your child is visually impaired or blind can be a devastating experience for parents. The group aims to offer emotional and practical support from parents who have been in touch with others who have similar problems.

MACS arranges a yearly get together so that parents and children can meet and discuss common issues which we all come across. We continue to raise public awareness of the needs of visually impaired children.

For further information, please contact: Maggie Bourne, 1 Skyrmans Fee, Frinton on Sea, Essex CO13 0RN. Tel. 01255-677511.

Robert's story

In an honest account, Melanie Godridge gives a parent's view of finding out about and coping with her son Robert's visual impairment.

Robert with his friends

    Robert with his friends

Robert was born 14 weeks premature and due to an excess of oxygen he has retinopathy of prematurity. He is totally blind and has no light perception.

I felt very bitter at the time of Robert's diagnosis. He was in the special care baby unit for 3 months and at no time was it mentioned that he could be disabled in any way. He was given a clean bill of health when we took him home at 12 weeks weighing 51bs 6oz. We were finally told the reason for Robert's constant crying when he was nearly 7 months old.

It was not colic as we had been informed, but glaucoma! We were absolutely devastated when we were told that Robert was totally blind. The reason he was always crying was because pressure behind his eyes was causing him pain.

At this stage he had been home for 31/2 months and no checks had been made on his eyes. We went home from the eye specialist and faced up to the facts. Our only child was totally blind and we wept for what we had lost. For me, it was definitely a kind of bereavement - we had lost the son we thought we had - the one who would enjoy walks with his Daddy and go bird watching, the one I would sit on my knee and read stories to and look at pictures together. When I look back on those months we had together before knowing he was blind, I feel very angry that we did not know sooner. The things that we did with him when we could have been putting our energies into stimulating his other senses seem wasted.

The very hardest part of finding out Robert was blind, was actually telling other people - especially our family. My family did not live close by and I felt very alone in those first few days; I spent them holding Robert and talking and crying with my husband.

I seemed to get most of the anger, bitterness (why my son? what has he done to deserve this? etc), and crying out of the way pretty quickly. I am not the kind of person who would just shrivel up and hope it went away. I was first and foremost his Mum, and if he was blind then I was going to be the best Mum he could wish for (although he may argue this point when I am yelling at him!). I rang several numbers for information and advice, and to be fair I received this very quickly, although no one had actually been in touch with us after his diagnosis. It would have been nice to speak to another Mum who had been in the same situation, but no one was willing to talk to me! We had known he was blind for 4 weeks before we had any kind of visit from a peripatetic teacher for the visually impaired. I feel this was very badly managed - we were left on our own for far too long after diagnosis, and if it hadn't been for me phoning around we might still be sitting there now!

When Robert was nearly 10 months old he had a lensectomy. Both lenses were removed to release the build up of pressure. Shortly afterwards he was a changed baby. He no longer cried for hours on end and started to sleep a bit at night. We seemed to get into a better routine and I started taking him out more. We visited a visual impairment support group in York, but there was only one other parent who went - her little girl was partially sighted. I still felt very out on a limb. When you have a perfectly healthy baby you can read lots of books and magazines to see how your child will develop and what stages they will go through. Unfortunately, there is no such book on the development of a blind baby. We knew Robert was 'behind' developmentally. When he was one year old, he could only just manage to sit up and was nowhere near crawling, let alone standing. We were more or less told: 'Being totally blind is really quite rare and we do not have much experience of it I'm afraid. You'll just have to see how things go'. I read everything I could get my hands on and slowly Robert started to make good progress. At his 3-year assessment, he had all but caught up and was doing really well. He has continued to progress and in January 1995 he started our local village primary school.

He is on the RNIB Integration Scheme where they pay for half the funding for his specialist equipment. They have had a Perkins Brailler adapted so it fits onto a computer with voice synthesiser and can also produce a print copy.

He has adapted very well to school life, helped and supported by dedicated school staff and all the other children. He has an excellent classroom assistant who prepares all his work for him so that he can do whatever his classmates are doing but in a slightly different 'feely' way. He was making tremendous progress, but recently that has slowed down due to the fact that the peripatetic teacher who had been supporting him for 3 mornings a week was made redundant in March 1996. Despite the fact that the Local Education Authority are breaking the conditions on Robert's Statement and that the classroom assistant and school staff have no support from a teacher of the blind, they continue to ignore our pleas to give our son the expert time and knowledge he so desperately needs.

Over the 6 years and 4 months we have had Robert we cannot say it has been easy, but it has certainly been interesting. Robert is our little boy first and foremost. I am extremely proud of him and would not wish him any other way. He is lively, chatty (very chatty!) and loving.

He is also strong-willed, stubborn and bad tempered, but then aren't all 6 year olds? We treat him 'normally' because to us he is. I can remember thinking in those first dark weeks - what will he be able to do? will he ever get a job? lead a normal life? get married? Now I think he can do anything he sets his mind to - he has certainly got the determination to succeed.

I know that we still have a lot of hard work and challenges ahead, but I know we will come through together. We are a close family and have been through the worst of it and survived. All I want for the future is for Robert to grow up to be confident, happy and to feel good about himself. If we achieve that, then we will be more than happy with the way things have turned out.

Melanie Godridge Parent

Useful contact groups

The following is a list of support groups relating to particular eye conditions.

Albino Fellowship produce a quarterly newsletter and a number of information leaflets. Mark Sanderson, Secretary, Albino Fellowship, 9 Burnley Road, Hapton, Nr Burnley, Lancashire BB11 5QR. Telephone 01282-776145 (evenings).

British Diabetic Association produce a number of publications including 'Diabetes and visual impairment - information for people with diabetic retinopathy' and 'Diabetes and your eyes'. British Diabetic Association, 10 Queen Anne Street, London W1 M 0BD. Telephone 0171-323 1531.

British Retinitis Pigmentosa Society offers support and contact through a number of branches. Produce a quarterly newsletter and information leaflets including 'Young people with RP'. British Retinitis Pigmentosa Society, PO Box 350, Buckingham MK18 5EL. Telephone 01280-860363. Contact a Family provide support for families who care for children with disabilities and special needs. They can put you in touch with national groups for specific conditions. Contact a Family, 170 Tottenham Court Road, London W1 P 0HA. Telephone 0171-383 3555.

Laurence-Moon-Bardet-Biedl Society offers advice and information to parents and professionals. Produces a twice yearly newsletter and two pamphlets. Drina Parker, LMBB Society, Spring Grove, Loudhams Wood Lane, Chalfont St Giles, Bucks HP8 4An. Telephone 01494-764924.

LOOK is the National Federation of Families with Visually Impaired Children. LOOK has many local parent groups around the country. For details of your local group, contact ¯ LOOK, Queen Alexandra College, 49 Court Oak Road, Birmingham B17 9TG. Telephone 0121-428 5038.

LOOK Plus is for parents of visually impaired children with additional disabilities. Ms C Scott, LOOK Plus, 11 Haslemere Road, Windsor, Berkshire SL4 5ET. Telephone 01753-866854.

Macular Disease Society produce a newsletter aimed mainly at older people, but do have some younger members. Macular Disease Society, PO Box 247, Haywards Heath, West Sussex RH17 5FF. Telephone 0990-143573.

Microphthalmia and anophthalmia - MACS puts families in touch with each other. They produce a newsletter 3 times a year. MACS, Maggie Bourne, 1 Skyrmans Fee, FrintOn on Sea, Essex CO13 0RN. Telephone 01255-677511.

National Diabetic Retinopathy Network, 7 Shore Close, Hampton, Middlesex TW12 3XS. Telephone 0181-941 5821 (evenings).

Nystagmus Action Group The Nystagmus Action Group (NAG) aims to promote awareness, understanding and to encourage medical research into the condition. It produces two guides and Focus, a quarterly newsletter.

Nystagmus Action Group, Membership Secretary, 9 Calthorpe Road, Stoke Hill, Exeter EX4 7JS. Helpline number 01392-272573.

Retinoblastoma Society produce a quarterly newsletter and leaflet 'Understanding retinoblastoma'. ¯ Retinoblastoma Society, c/o Academic Department of Paediatric Oncology, St Bartholomew's Hospital, West Smithfield, London ECIA 7BE. Telephone 0171-600 3309.

RNIB Education Information Service provides information about the education and development of children with sight problems and produces a large number of publications. RNIB Education Information Service, 224 Great Portland Street, London W1N 6AA. Telephone 0171-388 1266 ext 2296 or 2331.

RNIB Eye Health Unit The Information Service in RNIB's Eye Health Unit has a list of specialist support groups for different eye conditions. They also have information about some eye conditions and can often provide useful contact numbers for those who wish to find out more.

Contact Sheena McBride at the above RNIB address and telephone number on extension 2229.

Stickler Syndrome Support Group See the article on pages 19 and 20 for more information. The Group has produced a pack of information and articles about the condition, including a pamphlet entitled, 'Care of a Stickler Child'. Wendy Hughes, Stickler Syndrome Support Group, 27 Braycourt Avenue, Walton on Thames, Surrey KT12 2AZ. Telephone 01932-229421.

Tadpoles Developmental Glaucoma Support Group are linked to the International Glaucoma Association. They have produced a parent's guide and a newsletter every 6 months. Tadpoles Developmental Glaucoma Support Group, c/o Mrs Jackie Drewett, 65 Bush Barns, West Cheshunt, Hertfordshire EN7 6ED. Telephone 01992-627490.

RNIB has produced the following eye condition leaflets, which, while not specifically related to children, may be of interest:

  • Understanding cataracts
  • Understanding diabetic retinopathy
  • Understanding glaucoma
  • Understanding age-related macular degeneration
  • Understanding retinal detachment

These are available in print, braille or on tape from RNIB Customer Services. Telephone 0345-023153.

Early-onset nystagmus

Nystagmus is often a symptom of other eye conditions such as albinism. However, generally little is known about it. Here, Dr Chris Harris gives some background to the condition and explains the underlying causes.

Nystagmus is the medical term for a rhythmic 'wobbling' of the eyes. You can see a type of nystagmus by watching the eyes of a passenger who looks out of a side-window of a moving train or car - the eyes oscillate back and forth. This is quite normal. However, when nystagmus occurs spontaneously while the person is looking at a stationary object, it is abnormal and may indicate that there is something wrong with the eyes or the brain. A GP or paediatrician must be consulted.

As a rough guide, spontaneous nystagmus that starts before about 6 months of age is called 'congenital' or early-onset nystagmus. Although the nystagmus may not actually start until the baby is a few months old, it is usually caused by a visual problem that is present at birth. Nystagmus that starts later than about 6 months is usually called 'acquired' nystagmus and it can be caused by a visual or a neurological problem. Infants with early-onset nystagmus are not at any special risk for neurological disease later in life. This article only covers early-onset nystagmus.

Causes

There are many underlying causes for early- onset nystagmus. Albinism (either affecting just the eyes or the skin and hair as well) is probably the most common association, but aniridia, cataracts, coloboma, cone dysfunction, congenital stationary night-blindness, optic nerve hypoplasia and many other conditions may also lead to nystagmus. This type of early-onset nystagmus is often called sensory- defect nystagmus. However, in 10-20% of babies with nystagmus no underlying visual problem can be detected and the nystagmus is labelled idiopathic (of unknown cause) or motor nystagmus. It can be quite difficult sometimes to detect visual problems in infants, and special electrophysiological tests are needed to make a complete diagnosis.

Unfortunately, there is some misunderstanding about nystagmus; some people believe that it is the nystagmus that is causing their visual problem, Although this may be true for some, we suspect that in many there is an underlying visual problem that has not been correctly diagnosed. At Great Ormond Street Children's Hospital we are currently recruiting volunteers of any age who have 'just' nystagmus, to check the underlying diagnosis.

Inheritance

Early-onset nystagmus often runs in families, both the idiopathic form and that associated with a visual problem. It may be passed down from one generation to the next, or it may skip generations, but it may also occur 'out of the blue'. The pattern of inheritance depends on the underlying diagnosis, and it is important to have this diagnosis correctly made as soon as possible. If nystagmus runs in a family, a genetic counsellor can estimate the probability of a new baby being affected, as well as the probability that any affected children may pass on nystagmus to their children.

It is quite remarkable that patients with early- onset nystagmus do not perceive the world as moving. Instead, the effect of the nystagmus is to lower contrast and make eye-sight poor. Roughly speaking, the faster the nystagmus the lower the acuity. Except in the cases of idiopathic nystagmus, poor vision also occurs because of the underlying visual problem, so that even if the nystagmus could be cured, vision would still be poor. Most children with early-onset nystagmus are eligible to be registered as partially sighted, and this is recommended since it puts the child in the best position for receiving special help. Parents should not feel discouraged, because the vast majority of children learn to read in spite of their nystagmus.

One important factor is that the intensity of the nystagmus may change with eye position. Frequently, the nystagmus may be least when looking in a certain position. This position is called the null zone, and it usually corresponds to a region of best vision. However, the null zone often occurs when the eyes point to one side, which means that the child will turn his/her head to the other side to look at visual details. The nystagmus may also lessen when the child looks close up at objects, so it is quite typical for the child to watch television from very close and with the head turned to one side. Some children may also shake their head when looking at detailed objects. Children should not be told off for shaking or turning their head, since they are attempting to achieve the best vision for them.

Treatments

At present there is no cure for nystagmus. Nystagmus often decreases during the first few years of life, but it is almost always a life-long condition, regardless of the underlying diagnosis or whether it is idiopathic.

Over the years, many treatments have been offered to reduce nystagmus. These include various types of eye muscle surgery, special spectacles, biofeedback, drugs, hypnosis, after-images, flashing lights, neck massage, and most recently, acupuncture! All claim some success in some patients but most of these treatments have not undergone rigorous scientific trials. This is a special problem because early-onset nystagmus is very susceptible to levels of stress, tiredness etc, so that patients may report improved vision during a course of 'treatment' merely because they have become more familiar and relaxed with the testing procedure. A large head-turn can usually be reduced by eye muscle surgery, but this does not eliminate the nystagmus.

Education

The number of people who have early-onset nystagmus is not known, but it is sufficiently unusual that an affected child will probably be the only one in a mainstream school with the condition, and it is unlikely that teachers will have come across nystagmus before. Thus considerable input is needed from parents and peripatetic teachers for the visually impaired.

It is important to recognise that children with nystagmus may not only be visually impaired, but that they also have to cope with additional problems. For example, poor contrast makes reading from overhead projectors and white- boards very difficult; copying from the blackboard may be difficult and tasks involving maps or the use of an index may become slow; sharing a book in the classroom may become virtually impossible and a head-turn or head-shaking can be socially misinterpreted. Not surprisingly low self-esteem can occur. Nevertheless, children with nystagmus are usually intellectually normal, and they must be encouraged to pursue as challenging careers as their abilities and vision permit. Frequently, near vision is better than distant vision, so children can benefit from the enlarged images that can be produced by specialised computer hardware and software that are now becoming readily available.

Dr Chris Harris Department of Ophthalmology, Great Ormond Street Children's Hospital

    Further information about early-onset nystagmus can be obtained from the Nystagmus Action Group helpline number 01392-272573.

NAG - the Nystagmus Action Group

'If the Nystagmus Action Group didn't exist already, I'd set it up myself', wrote one Mum five years ago. Well, it did not take us long to get her playing an active role in the Group; which since then has seen membership more than double to 650 and it is still rising.

The Group was set up in 1984 by parents and sufferers to help all those affected by nystagmus and to try and fill the information vacuum about the condition. Even though visual support teachers say nystagmus is probably the most common condition they deal with, little is known or understood about it. Our longer term goal is to get more research carried out, so that eventually there may be a treatment or even a cure or a way of preventing nystagmus from developing.

Since those early days more than ten years ago, our services have expanded from an occasional newsletter and one booklet to include the following:

  • a quarterly newsletter
  • two booklets, a factsheet, teacher's guide, information sheet on registration, various articles and audio tapes of guest speakers at our meetings
  • a telephone helpline and written enquiry service
  • an expanding programme of meetings and talks around the country.

We have forged close links with other organisations in the field of visual impairment and with professionals. We now have a medical and scientific adviser from Great Ormond Street Hospital for Sick Children.

Currently, we are considering the major step of moving from a purely voluntary organisation to taking on our first paid development officer. We have also launched ourselves on the internet.

All too often, we hear from parents and individual sufferers who have either been given almost no information at all at diagnosis or, in a few short minutes, have simply been told the outlook is bleak. From believing they had a perfectly healthy child, parents are suddenly thrust into a frightening world of the unknown, where often the only words that stick with them are 'blind', 'partially sighted', 'special schools' and, 'of course, he'll never drive'.

Support and information

Providing support and information are our main activities. An understanding letter, an hour on the phone, an evening's talk to eighty parents on a cold January night in a draughty school hall. These are the things we find make the difference between hopelessness and despair and the ability to face the future with some confidence, knowing you are not alone and that things almost certainly will not be as bad as you feared.

In most cases, I am glad to say, nystagmus is not end of the world and the majority of people with the condition lead fulfilling lives. The Nystagmus Action Group is here to help make sure that happens with the minimum of anguish and concern on the part of parents and sufferers and to share our knowledge and experience with professionals, so that together we can find solutions to those problems that do exist.

John Sanders, Honorary Chairman, Nystagmus Action Group

    Contact details:

    Nystagmus Action Group, Membership Secretary,

    9 Calthorpe Road,

    Stoke Hill, Exeter EX4 7JS. Helpline number 01392-272573

Stickler Syndrome

After years of being misdiagnosed and misunderstood, Wendy Hughes vowed to raise awareness of the genetic progressive condition known as Stickler Syndrome. Here, she describes her symptoms, how she was eventually diagnosed and coping with the condition.

Have you heard of Stickler Syndrome? No? Then rest assured you are not alone. Most of the medical professionals who contact me know very little or have not heard of it either. Yet just eight years ago Stickler Syndrome gave me a whole new outlook on life and changed it for the better. At the time I was 38, and had been medically retired, I felt frustrated and doors seemed to be slamming shut whichever way I turned. Finally, Stickler Syndrome was diagnosed and suddenly life had a purpose! But to explain the transformation we need to go back to my birth.

I began life in 1948 as a premature 'sickly' baby with a sub-mucous cleft palate, which made feeding extremely difficult. My problems increased when I started school. Stiff sore joints prevented me from keeping up with my peers.

My mother took me to many consultants who said that she was fussing over nothing. I also suffered from severe myopia and my hearing was intermittent. As I strained to see the blackboard and hear what the teacher was saying, grasping the lessons became more of a struggle. Because of my palate problems and not being able to hear clearly, I could not pronounce certain words properly and this made me introverted and timid.

I longed to communicate with others without the fear of mispronunciation. In my mid-thirties, a bout of ill-health left me arthritic and lethargic. My GP arranged visits to consultants, and while most agreed that something was wrong, none could pinpoint what. Steadily I became more frustrated. If nothing could be diagnosed why was I slowly disintegrating?

Was it all in the mind?

In May 1988 I noticed what appeared to be black streaks falling before my eyes, accompanied by flashes of brilliant light. I went to see my GP and within six hours I had been seen by an ophthalmic surgeon and operated on for bilateral detached retinas. Strangely, at the time it did not occur to me that my sight difficulties could be hereditary, as my mother had also suffered bilateral detached retinas. The operation went well, but one week later one retina detached again forcing another operation. This time I was taken to Moorfields Eye Hospital in London and introduced to Robert Cooling, a surgeon who specialised in retinal disorders. After a careful examination and an investigation into my past and family history he gave me the reason for all my difficulties.

I was suffering from a common, but little recognised condition called Hereditary Artho-Ophthalmopathy or Stickler Syndrome. This is a genetic disorder that affects the body's collagen connective tissue. Between 1 and 3 in 10,000 people are thought to be affected by the syndrome. There is a 50% chance that a child of someone with the condition will be affected. Broadly speaking, the symptoms can be divided into 3 main groups - eyes, joints and facial appearance. Sight problems include myopia, tears and retinal detachment, pre-senile cataracts and glaucoma. Joints can be stiff or over- flexible and can lead to osteoarthritis in later life. Facial abnormalities can include a cleft palate, a flat face and a small nose with little or no nasal bridge, although these tend to become less prominent with age, a possible hearing loss and glue ear caused by the cleft palate. Other symptoms may include scoliosis, mitral valve prolapse and, because of the sight and hearing problems, some learning difficulties may be experienced. On the day of my second operation, I heard the news that a magazine had bought my first article. The diagnosis together with that acceptance signified a new era for me. At that stage I did not know what fate held for my vision, but after my earlier struggles I had found a way of communicating and could not give up now.

Once home, I began researching about my condition. I was appalled to discover that nothing had been written for the lay person, and only a limited amount, in medical journals, for professionals. However, I discovered that the condition was named after Dr Gunnar B Stickler, who in 1965 had studied a 5 generation family with similar problems at the Mayo Foundation in Minnesota.

I wrote to the clinic requesting information. Much to my delight, I received a letter from Dr Stickler together with copies of his initial findings and a follow up report written in 1967. Since then, we have corresponded regularly and he has put me in touch with many affected families in America and Europe, whilst my ophthalmic surgeon has passed my name to families in the UK.

Correspondence with these families revealed an urgent need for information. Like me, most had been misjudged, misunderstood and wrongly diagnosed and were so relieved to find other people experiencing similar problems. Before contacting me they had thought they were alone, and many felt the responsibility of passing on the disorder to their children an enormous burden. It was during contact with such families that the ideas to set up a support group, to raise awareness within the medical profession and to write a book on the disorder were conceived.

I found that once families understood a little about the condition they could live more comfortably with the symptoms. There is no cure for Stickler Syndrome, but early recognition can lead to preventative treatment to save and maintain useful vision. Diagnosing Stickler Syndrome is relatively easy for an ophthalmic surgeon, because the changes that affect the retina are almost unique in their appearance, and are often the principal factors in establishing a diagnosis. These changes include degenerative thinning of the retina, particularly along the blood vessels, and positioned far back in the retina with characteristic lattice degeneration.

The Support Group began informally and now has its own annual conference. The word concerning the disorder is certainly spreading and it is interesting to watch a ripple effect radiate throughout a county. First I am contacted by GP's, community nurses, social workers and rehabilitation officers who in turn pass details on to families. Finally, ophthalmic consultants, rheumatologists and hospital family centres request information.

Much to my delight, my book, 'Stickler - The Elusive Syndrome', was published towards the end of 1995.

Since being diagnosed, I have undergone many major and minor operations and various treatments for arthritis. My health has worsened, and I am now registered partially sighted, but life is so rewarding and exciting that living with a progressive condition is no longer a problem. I have come to terms with my condition and accept that my difficulties at school were beyond my control. More importantly, I am trying to help others to feel positive when faced with the same diagnosis.

Wendy Hughes

Curriculum

Leisure Reading and Resources Group

Who are they and what do they do? Caryn Welsh explains.

School Textbook Committee, Young People's Reading and Resources Committee, Leisure Reading and Resources Group. Three different names. Maybe you have heard of one of them, maybe you have heard of all three. Essentially these three names form the history of a group. The School Textbook Committee met for a number of years, but with the foundation of the Curriculum Groups felt that it should examine its remit, relaunching itself as the Young People's Reading and Resources Committee in May 1991.

From this point on, we focused on the leisure reading needs of young people up to their late teens with the aim of influencing the provision of resources and reading material for all visually impaired children and young people. As the result of a rather interesting meeting in October 1995 we felt there was a need to re-state our aims and take a good look at ourselves. In the spring of this year we were adopted by the VIEW/Curriculum Group structure, so that we were no longer floating about in the ether on our own.

Over the past five years we have met with varying success in our endeavours. One theme throughout most of this period has been our work, through Rory Cobb, with Gloucester Prison, and more recently with Usk Prison. Our aim was to set up a rolling programme of fiction being transcribed into braille. However, this has been beset with a number of problems beyond our control. We could regale you with all the trials and tribulations, which, if you can stand back from it make quite a funny story, but we will merely tempt you with the prospect of an imminent launch and tell you to look out for details. Much credit must go to Rory for his tenacity when dealing with a prison service whose aims are very different to our own.

Last year we produced a leaflet called 'Where do they hide the large print books' which has since been distributed to peripatetic support services by RNIB. The aim of this leaflet was to raise awareness of which mainstream publishers were producing some of their non- fiction in a larger than normal print size and hence might well be of use to some visually impaired pupils. We were very grateful to Morley Books for financing the printing costs. More recently we have tried to separate braille production for the different age groups amongst the different producers we work with. We have four categories: newly fluent, 9-13, young teenagers and young adult. Naturally, these are not hard and fast rules and there will be some overlap, but on the whole producers have a focus for their work and can build up a level of expertise, rather than trying to cover such a vast group in its entirety. Given time for this to become established practice, readers will also come to know which producers specialise in the books that interest them, as they currently do with ClearVision at Linden Lodge. In all of this we have made a commitment that the less able will not be forgotten.

For its members, the group has also become a valuable forum for sharing ideas, experience and knowledge. With our new title and inclusion in the Curriculum Groups structure we have revamped our aims and objectives as follows:

Aims
  • to be a general forum for discussion on recreational reading in braille, print and tape and a means of providing such material to be transcribed which will then be passed to the producers where possible;
  • to work at raising awareness of current issues on recreational reading in any format.
Objectives
  • to advise and make recommendations on areas of recreational reading provision for young people;
  • to provide a selection of titles and gain a commitment to produce in braille or large print if possible in the following categories: newly fluent, young teenagers, less able readers and young adults;
  • to include discussion and presentation of suggested books.

One of the regular features of our agendas is that each member brings along two books which they feel would be enjoyed by one or more of our target groups. Everybody comes prepared to talk about their chosen books and they form a list which is then passed to RNIB, NLB and Chivers. At the next meeting we receive feedback on which books the different producers have taken up.

Our focus at the moment is on the provision of large print. We have looked at a number of series which appeal to either less able readers or the newly fluent and feel that if the print size was increased slightly they would be suitable for use by visually impaired pupils. To this end we are endeavouring to liaise with the production departments of mainstream publishers.

The Group consists of a mixture of people including librarians, technicians and teachers from a variety of organisations ranging from RNIB, NLB and special schools on the one hand to peripatetic services, mainstream schools and public libraries on the other. We tend to be practitioners, rather than philosophers, becoming involved directly with production.

Caryn Welch Bramcote Park School, Nottingham

Review: book

Children with visual impairments: a parents' guide

Edited by M. Cay Holbrook, Ph.D.

“We laugh so much more than we cry these days"

This is a quote from the first chapter of an excellent new book for parents of visually impaired children.

At RNIB's Education Information Service, we are contacted by many parents who are striving to find information about their child's sight problem. Most parents I speak to have been given very little, if any, information about the impact of the sight problem on their son or daughter's development, or about any of the support services which can help. What a difference it would make if every parent were handed a copy of this book!

Written by parents and professionals with vast experience of bringing up children with severe sight problems, this book helps parents, gradually, to consider what impact the sight problem is likely to have on their child's life and their family life.

The book is very American and some of the language used is different to that used in the UK. References to organisations, trade names and support services are of little use. What I like about the American-ness of it, is the open and honest style in which it is written. The book de-mystifies much of the medical jargon and uses quotes from parents to provide a reassuring grounding throughout.

It focuses on what parents can realistically do to help their child develop to the best of their abilities. It covers a comprehensive range of issues, from dealing with strangers, to helping children develop socially acceptable behaviours, independent mobility and literacy skills.

I would recommend that anybody who works closely with parents of babies and children with sight problems have a copy to hand at all times, to lend to families trying to come to terms with the diagnosis.

Nancy Chambers Manager, RNIB Education Information Service

    'Children with visual impairments' is available from: Gazelle Book Services, Falcon House, Queen Square, Lancaster LA1 1 RN Telephone 01524-68765. Price £13.99 plus £1.95 p&p. Alternatively, ask your local bookshop to order for you.

Music matters

By Adam Ockelford, RNIB 1996

In his most recent publication, 'Music matters', Adam Ockelford continues to uphold the case for equal opportunity in the field of music for visually impaired children and young people. His great experience, research and passion are evident throughout the book. It is intended for teachers (music and others) of visually impaired students, those in advisory branches of the profession, professionals in other areas, parents and the students themselves.

The text is written with great clarity and in a very concise way. It is a practical and thought-provoking book, offering much information and guidance. On the whole, however, it assumes the reader to have considerable understanding and knowledge of music-making.

The first section addresses classroom management of such issues as pupils impairment, lighting, seating, work space and access to information. There then follows a discussion on the topic of musical ability of visually impaired children and young people. Might I throw in a suggestion that a wider group than teachers could perhaps recognise that perfect pitch is no guarantee of a wider musicality?

The greater part of the book is devoted to the role of notation in music. An excellent introduction leads to a very clear explanation of the braille music code, followed by a chapter on the learning and application of it by a braille user. The use of tapes as 'talking scores' is included in a section on alternative approaches to reading and notating music.

A description of the problems of accessing music in large print and advice on technology are also valuable.

The final section, 'Playing matters', offers a most interesting discussion, together with advice and musical ideas relating to playing by ear, improvising and indeed, playing instruments themselves.

There is also a useful bibliography, although it is one which reveals the need for a book such as this. The Supplement, compiled by Sally-Anne Zimmermann is a useful reference for a wide range of information. (Could I add here that in Scotland, Standard Grade and Higher Music take the place of GCSE and 'A' Level).

I think that Music matters is excellent value at £7.50 and would be invaluable for a teacher beginning to teach music to visually impaired young people. However, while I greatly admire the positive and committed approach, I personally would argue with Adam Ockelford's statements that 'Visual impairment prescribes virtually no limits on musical achievement', or 'ability to play instruments'. In my experience, there are many additional problems related to visual impairment (I do not refer to multi-disability) which do constrain progress but which are not addressed here.

Personally, I feel that everyone in music education could benefit from a spell with visually impaired students and this book would be of interest to anyone who is interested in music with young people.

Judith Dean, Royal Blind School, Edinburgh

    Music matters is priced £7.50 and is available from RNIB Book Sales Service, Education Centre: London, Garrow House, 190 Kensal Road, London Wl0 5BT Tel: 0181-968 8600.

Leisure: Vacation Schemes

Marie Brown describes her experiences as a volunteer at one of this year's Vacation Schemes

RNIB Vacation Schemes are run annually at a variety of different venues around the country. They are intended to bring together blind and partially sighted children and young people to participate in educational and leisure activities. Throughout the week they have opportunities to develop their social skills and independent living skills, experience new activities and above all have lots of fun! Being a mainstream teacher myself, and wanting to become a qualified teacher of the visually impaired, I saw working on a Vacation Scheme as a volunteer to be an excellent opportunity to extend my experience with visually impaired children.

I joined the Vacation Scheme at Condover Hall near Shrewsbury. As I arrived on Friday evening at the spectacular house and grounds I felt a mixture of excitement and apprehension about the week to come. After meeting the rest of the staff I felt very much at ease, and as soon as the children began to arrive on Saturday morning, our busy week was well underway. The children, aged 8 to 11, had fairly structured days which began with living skills in their flats at breakfast time. This was followed by planned educational activities focusing on the theme of communication. Afternoons were mostly set aside for visits to a variety of venues. Throughout all these activities the children could go at their own pace and it was a timely lesson for me in slowing down and observing my surroundings more fully.

educational and leisure activities conducted by RNIB for visually impaired children

    educational and leisure activities conducted by RNIB for visually impaired children

The children loved the physical activities, with swimming and the dry ski slope coming out as favourites with many of them. They tackled the ski slope with toboggans and skis and appropriate accompanying sound effects! There was also a mention for the children on Radio Shropshire the next day as a number of them had been interviewed. The museums we visited were happy forthe children to touch and explore the exhibits. At Hoo Farm, the children delighted in feeding the animals, feeling them snuffling in their hands. They also loved the clattery steam train and the varied terrain of Hawkestone Hall, They clearly progressed during the week in many different ways from trying something completely new, to learning how to make their own breakfast independently. The week had a very positive atmosphere which was felt and appreciated by children and adults alike. My lasting impression is that it was fun, and that has to be the best way to learn. Visually impaired children should be given as many opportunities to try new things and broaden their experience as possible. The experience for me has been invaluable. Throughout the week I felt myself becoming more and more in touch with the children and their needs, learning about personal and living skills, mobility and communication.

I saw them overcome difficulties, develop confidence and skills and enjoyed their warmth and vitality. I am sure that the experience will help me on my way to working with visually impaired children, and I certainly hope to go on another Vacation Scheme next year.

Marie Brown, Teacher

    Photographs with kind permission of parents and children featured. The 1997 RNIB Vacation Scheme Programme will be available from January 1997. To receive a copy, please contact Angela Dinning on 0113-274 8855.

Let's go!

Recently, we asked for young visually impaired 'roving reporters' to review exhibitions and performances. Here's how they enjoyed what was on offer.

'Tap, ruffle and shave' at the Royal Festival Hall

This was described as 'an installation to meddle with' and it certainly lived up to my expectations - and more! It relied mainly on the sense of touch but included smells, sounds and colour as well. I felt totally involved with everything there and had a brilliant time.

There were plenty of holes to plunge your hand into; you never knew quite what you would feel - from beads to fluffy fur, to rough tree bark, to things that can only be described as ... indescribable! You could walk against a giant pinscreen that seemed to be made of hundreds of drumsticks, and made an impression of your body on the other side. There were lots of cupboard doors to open which revealed a rain chamber or an ice cavern or a selection of weird and wonderful seed pods.

I congratulate the designers on this brilliant achievement - it was interesting, fun and something that I, being totally blind, could relate to.

William Thorns

By Jeeves

Recently my Dad and I, both of us avid PG Wodehouse fans, went along to an audio described performance of 'By Jeeves' at the Duke of York's Theatre in London. I had been there before to see another audio described play -Roald Dahl's 'The Witches'.

I enjoyed both plays immensely. I saw 'The Witches' four years ago when I was eight. At that time I was reviewing it for the BBC Radio 4 programme 'In Touch', so I got to see how audio description was done.

For every performance there is a live audio describer sitting in a room with a monitor showing the play as it happens. He or she has seen the play several times before and writes notes on a script where there are gaps in the dialogue to enable description of actions and expressions. This is particularly helpful in 'By Jeeves' as there were a lot of expressions and visual humour that I would have missed. At the beginning of the play, they give details of the costumes and set. All this information is sent to an infra-red lightweight headset that you wear in the theatre.

We were told that you had to have the best seats in the house for the audio description. But the good thing was that both visually impaired person and carer go in half price. This meant we paid £12.50 per seat. I would recommend this play to children over 11, and it helps to have read or seen Jeeves and Wooster stories before.

William Thoms

Science Museum 'See me!' exhibition

Although I knew that this exhibition was for people with a range of special needs, I think that it did not really work for visually impaired people. It was mainly an art exhibition which I had not expected. The pictures were of different science related subjects, and some of the people depicted had special needs themselves. The braille descriptions were too brief and did not give enough detail. Older people might have liked reading about the paintings, but as a child I found it rather boring. The only tactile exhibit was a bronze sculpture of Einstein's head, but I did not learn anything from it. I was given some objects to feel that were connected to the paintings, such as a hat similar to that worn by Mrs Sage, the first lady aeronaut. These did help to enhance the pictures, but I would have like something more interactive that might have taught me more about science.

Later, I walked around the rest of the museum with my Dad and found his descriptions much more helpful. One of the things I was really interested in was the engine of a jumbo jet which I was able to feel totally. It was nice to find an exhibit with no barriers around it or 'do not touch' signs. I do understand that some things are too precious to touch, but it would be a good idea if they could have a detailed scale model of them nearby. Overall, I had a good day at the museum, but found the 'See me!' exhibition itself a little dull.

William Thoms

La Boheme at the London Coliseum

Audio introduced opera, as distinct from audio described opera, is where each act or section of an opera is introduced by a short introductory talk, relayed to the listener by a special headset.

La Boheme is quite a short opera with only one interval. The audio introduction works by giving information about the basic plot and staging of the opera at the beginning, followed by a detailed description of all the events in acts one and two. There are some announcements at the end of act two, and the necessary information for acts three and four is given about five minutes before the start of act three. At the end of the performance, you are told about who is coming off stage, and I found this quite useful. All the commentary is presented live. The only problem was trying to remember all the details for the appropriate act, so I did need help at times to understand what was going on. The performance was in English, as are all ENO productions, but the singers were sometimes drowned out by the orchestra. This occasionally caused problems for me in working out where the story had reached. La Boheme is a good opera to see if you have never seen an opera, since it is fairly light and short and has a simple plot.

The audio introduction is very helpful for visually impaired people, it makes understanding the plot much easier. Indeed, I could not have followed the story without it. I know the ENO now run this audio introduced service regularly. They also offer information in sign language for the hard of hearing, so they are obviously keen to meet the needs of disabled people.

I would recommend opera with audio description as a thoroughly enjoyable evening out, even if you know very little about opera.

Alex James

Technology

International Computer Camp

Student Daniel Bateman enthuses about his experiences at the International Computer Camp in Linz, Austria that took place in July. The Camp was open to blind and partially sighted students between ages 16-18 from a number of European countries. A total of 6 students went from Britain.

The International Computer Camp offered a chance to learn about information technology and a cultural exchange with students from all over Europe. I personally wanted to go to experience European culture, to learn IT and last but not least to have fun!

Daniel attended the following technology workshops:

We arrived on a Saturday having travelled by plane, train and automobile. That evening consisted of listening to a band around a bonfire. On the following day we had an introductory session and chose which IT classes we wanted to join. I learnt DOS for beginners. We were taught how to store files on the computer and how to save them onto a disk. At first I found this very difficult, as I have never used DOS. The session was run by a tutor from Switzerland. This was an excellent session, although I felt it was quite a hard start to the course. That evening we toured Linz and went to the local pub, giving us a chance to meet other participants.

Monday morning's lesson was run by a French tutor and was very interesting. We learnt how to use the DOS-based program Song Write for music notes and music writing. We had a wonderful buffet in the evening, followed by a disco and evening out to a nightclub!

Tuesday began with an internet and email session. This was great fun as it gave me the opportunity to write to people all over the world by writing a message and then following instructions to write a code or email address. This will be of value to me for use at University. The afternoon was spent on a spooky visit to a salt mine.

On Wednesday morning I asked if I could study DOS for beginners again as I found the first session difficult. This time I was given an instruction sheet which helped. The evening's activity consisted of a barbeque around a camp fire. We watched and listened to performing arts and music from different countries. Thursday morning's session covered studying in Europe. In the afternoon we learnt to use WordPerfect with DOS.

It was useful to compare with the Windows95 version. I established how to change from using a German keyboard to an English keyboard.

Friday was also excellent, as I had the opportunity to do a music workshop where we used a music technology programme. My friend and I produced a backing tape for the farewell party, and we all played our part on stage.

I thoroughly enjoyed the week and would recommend it to any young person. It gave me valuable computer experience and the opportunity to meet other visually impaired young people from all over Europe.

Daniel Bateman

DOS for beginners

Aims:

  • what is a disk operating system?
  • how are commands used?
  • what are files and directories?
  • how to display a directory
  • making a new directory
  • changing to another directory
  • copying, moving, reading, renaming and deleting files
  • formatting disks
World Wide Web

Aims:

  • to find ways of accessing information by using WWW browsers
  • how to design and write your own personal WWW page

Notation program

Aims:

  • to use an ordinary DOS editor
  • to use a special program to convert the notes written with letters into musical notes and import them into the program SongWrite. SongWrite will graphically show the displays a tune on screen and can play it, if the computer is connected to a loudspeaker.

Windows 95

Aims:

  • how to adjust the screen layout for your personal requirements
  • font size and type, colours and contrast - to learn about Zoomtext enlargement software

Internet

Interesting sites

The following internet addresses may be of interest to parents and professionals working with visually impaired children who have access to an internet connection. When searching for these sites, it is vital to type in the exact address as shown below. Please be aware of case sensitivity. These addresses were supplied by the RNIB Reference Library.

Command Corp. Inc.

www.commandcorp.com/cci/incube welcome.html

(unofficial) Lights for the Blind: Adaptive Technology Help Center www.community.net/~byndsght/resnick.html

NCIP (National Center to Improve Practice in Special Education Through Technology, Media and Materials)

www.edc.org/FSC/N CIP/

Productivity Works

www.prodworks.com

Tools for learning - technology for visually impaired students

www.jlodge.demon.co.uk/

Visability Problems and Solutions titan.mic.dundee.ac.uk/engineer/porting/index.htm

Visually Impaired Resource Center of Carefree Computing Services www.cfci.com/handicap/center.html

WWW Access for Blind and Visually Impaired Computer Users www.inf.ethz.ch/department/IS/ea/blinds/

American Council of the Blind

www.acb.org

AFB (American Foundation for the Blind)

www.igc.apc.org/afb/

In Touch Handbook

www.netlink.co.uk/users/pia

Nystagmus Action Group

www.btinternet.com/lynest/nystag01.htm

Opsis

www.ex.ac.uk/opsis/

Rehabilitation Research and Training Center on Blindness and Low Vision www.msstate.edu/Dept/RRTC/blind.html

Royal National College for the Blind

www.rncb.ac.uk

Royal National Institute for the Blind

www.rnib.org.uk

Teesside Society for the Blind

www.netlink.co.uk/users/lincs/tadsftb.html

Youth and Children Net

www.azc.com/client/enn2/ycn.htm

Technology news

Nystagmus Action Group on the internet

NAG are currently piloting a new web site on the internet including some basic information on nystagmus and covering 'frequently asked questions'. Internet address: http://www.btinternet.com/lynest/nystag01 .htm

In Touch handbook

The In “Touch handbook’’ has now been made available on the internet. Although an appeal was made last year, In Touch Publishing has not reached the target needed to secure the future of the handbook. The existing handbook, containing sections on children and young people, daily living skills, communication and rights and benefits, can be browsed on the internet at www.netlink.co.uk/users/pia

Speaking web browser

Productivity Works, a software company based in New Jersey, has launched a new speaking web tool which claims to be a simple, effective way for visually impaired people to access the internet. The product, pmWebSpeak Version 1.2 is available for $250 (commercial) or $125 (government and educational) by downloading it from the Productivity Works home page: http://www.prodworks.com or info@prodworks.com

Content author: joanna.shaw@rnib.org.uk

Last updated: 20/10/2008 15:51

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Smokers are twice as likely to develop eye diseases such as cataracts and age-related macular degeneration, which can lead to blindness.




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June's story - June Croft was told she had glaucoma after having an eye test. She was given drops to prevent further deterioration and later had an operation. 'Having an eye test is the most important thing you can do. It stopped me from going blind. People don't realise how quickly something can go wrong with their eyes. It doesn't hurt, everyone should do it.' June's full story.