Poor communication and a lack of understanding can leave families with a visual impairment in the dark.
What can be done to help?
Focus area: Early intervention
Mrs Olive Light
Director of Services for the Blind
Isle of Wight Society for the Blind
Sight Concern Centre, Wallace Court,
England PO30 2DF
Telephone 01983 522205
Fax 01983 522792
Parents always want the best for their children. Usually much planning and preparation has gone into their arrival. They have hopes and dreams. Maybe the children will set the world alight, become a famous footballer or movie star. Or they may just be content to see them grow up in a loving stable environment.
So at whatever age the child develops a visual impairment it is going to be a shock for the child, the parents, the family and friends. There will be all sorts of feelings, resentments and questions. It is so important that in the very early stages good practical advice and emotional support are available. Those giving this should be saying the same things and not contradicting each other.
When preparing this talk I decided to research the experiences of local parents of visually impaired children. I sent them a questionnaire and here are some of the replies I received:-
I remember one father especially. His baby had no sight due to prematurity of retinopathy. His father was sitting in the corner of the room completely ignoring me. He was a keen snooker player and had hoped his new baby son would enjoy and share his hobby. He was devastated when he heard his baby could not see anything. Now, nearly fifteen years on, they are good mates and enjoy doing things together and he has two other sons to play snooker with.
The family were helped to come to terms with their baby’s blindness by the local “Paediatric Support Team” which consisted of the Paediatrician, Health Visitor, Education Adviser, and Rehabilitation Worker who worked together and met at regular intervals. As the child grew there were good links with the Vision Support Team which included the Rehabilitation Worker, Peripatetic Teacher for the Blind and Classroom Support Assistant.
Some families have to face up to the fact that their child, although born fully sighted, has lost its sight through a rare virus or an accident or other trauma. It really is most important that they are able to access the help and support they need.
So let’s move on and ask, what were the keys to success with the family I mentioned earlier? We need to advertise our services and have eye catching posters giving the name and phone number of our organisation. They need to be in places where people go and a good place to start is at the Hospital, the Eye Clinic, the Health Centres and the Libraries. We should make sure other professionals know what you can provide. We need to talk to them, meet with them on a regular basis and invite them to your centre to see all the equipment available to help those who are visually impaired. Organise occasional lunches for our Community Workers. Good working relationships are most important, as is an understanding of what other professionals have to offer. We must ensure the family gets all the support from different sources that it needs.
We have regular contacts with schools. One of our volunteers tries to go into at least one school a week to talk to the children about her blindness and the help she received from the Isle of Wight Society for the Blind. So if a problem arises with a child’s sight then the school knows where it can access help. Our two Rehabilitation Workers regularly go into schools, supporting children who have a visual impairment. They provide teaching in keyboard skills, mobility, advice on magnification and a whole range of useful everyday advice. In return the schools often organise a fund raising event for the society – which in turn raises our profile with all the other parents.
Perhaps you are not able to offer a service at present. If that is the case I hope you will return to your organisation and plan to set one up and advertise it. You should first consider a booklet on “Failing Sight” which explains where to get help for children and families. You may already have one for your adult and elderly clients, so put together a supplement. This booklet should signpost families to organisations such as those giving advice on eye conditions and useful web-sites. You should also be providing emotional support and counselling. Parents will need to talk to someone who will listen. You should have an up to date range of equipment for people to try out, and games that the visually impaired child can play with their family or friends.
Someone should be available to encourage the parents to treat the child as normally as possible and to expect them to reach the milestones set for sighted children. The parents should be encouraged to keep a diary of the child’s progress, hospital appointments, operations and achievements. Help, advice and information must be given right at the start on how to help the child explore its environment and to use its hearing. The family will need support when registering the child for a nursery, a playgroup or for school. Someone should be on hand to accompany the parents initially and to be able to reassure those in charge that it will be all right to have this child along.
A handicapped child = a handicapped family. The needs of other children in that family need to be taken into consideration. It may be that a volunteer befriender can be introduced to the family to spend time with the child, leaving the parents time to spend with the other children. This will be particularly necessary at first when there will doubtless be several appointments at hospitals and clinics. These are always so time consuming and wearisome.
Mobility will be an essential part of the child’s life and this needs to be started at an early stage and include the parents. Resistance to using a cane may be overcome by personalising one.
Parents need parents. I have found it difficult to set up Parent Support Groups as such. This is due to the pressures already on parents but they still need to meet up. So consider having small groups just meeting for coffee and chat who are linked by a common thread – e.g. nystagmus. Ask your parents if they would be willing to be approached by another family experiencing the onset of blindness in their child. Parents can become a great source of knowledge and are often only too happy to share it.
Remember too, it costs more to have a handicapped child. Those hospital appointments can be costly, considering the travel costs and the treats necessary to get through the day. So help in getting benefits and grants should also be available from your organisation.
There may well be denial or refusal to accept that there is a problem with failing sight by the family, the child and/or the medical profession. One family I have been in contact for many years had a very difficult experience before I met them. Their daughter was born with poor vision and the mother tried to get some help. Someone from Social Services called to see her and said that she knew nothing about children with a visual impairment as she only worked with adults. So the mother received no help and eventually persuaded the local playgroup to allow her child to attend. It was a very bad experience, because although the playgroup was very helpful, the noise made by the other children was very frightening and the child would crouch in the corner. Desperate for help the mother went to her Doctor, who was concerned that nothing had been done to help. He arranged for someone to visit from the local Education Department, who carried out an assessment of her sight and arranged for her to go to the local Blind School.
At last something was being done and because of the trauma the family had been through and the lack of help, it was felt the child needed Mum in the classroom. So for three months Mum went into school too and helped first of all in her child’s class and then gradually withdrew to help in other classes until it was felt the child had settled. Then the child’s sight started to deteriorate so she was left with very little vision. The child denied it but the teacher gave her a book to read to the class one day and gave it to her upside down. She told the story from memory, as she could not read it, in the hope she would convince the teacher she could see. An appointment was made for her to see an Eye Specialist who said that there was nothing wrong with the child’s eyes. She just didn’t want to see. In fact he went as far as to suggest that something was obviously very wrong at home and the child was refusing to see because of it. He suggested the family received counselling. The family was very confused and upset. Her angry mother contacted the first Eye Specialist the child had seen as an infant and also got a second opinion from another specialist as Moorfields Hospital. These two agreed that this girl had virtually no sight. Can you imagine the anxiety this caused? As Mum said to me recently ‘it was very traumatic not being believed and having to convince this man that my daughter could not see. He would never agree with me and was very cross that I had gone to the other Eye Specialist. But what could I do – I was desperate.’ This last year their daughter has graduated from University with a First Class Honours Degree in Fine Art, thanks to support of her parents and her own hard work.
To avoid such disasters we need to be available to help parents and children when disasters happen. We need to provide a good service for parents and children. They will know about us as soon as they need us because we will be well advertised. Our service should include advice, and information on benefits, equipment, education, employment and training. There should be a parents’ network and help in obtaining financial help. A booklet with a wide range of information should be available. Let us make sure that poor communication and lack of understanding is a thing of the past as we set up paediatric and vision support groups, which will enable us to work together with professionals, exchanging knowledge, supporting each other, for the benefit of the children and their families.
Please send comments or questions to firstname.lastname@example.org.