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This project has been funded with support from the European Commission. This publication reflects the views only of the author, and the Commission cannot be held responsible for any use which may be made of the information contained therein.

 

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Parental support in the development of reading by vision impaired children - Results of Interviews with Parents in Five European Countries

Introduction

 

Reading brings together the skill of matching symbols, either visual or tactile, to sounds to construct words with the experience of the reader to draw meaning from the symbols.  How can parents support their children in developing reading skills and help them to develop a body of experience to widen their understanding of what they read?

Language enables us to share our experiences and thoughts and, freed from the limitations of concrete reality, it can be a doorway to imagination and the sharing of ideas and dreams beyond our daily experience.  Spoken language is between people in the here and now but written language transcends time and space, enabling us to listen to people from a different age and from different places, to have indirect contact with a world of ideas and imagination through literature.  As a culture, we have become so dependent on literature to create our understanding of the world and our place in it that our ability to read has become a key element in forming our individual identities and this applies equally to vision impaired children.  This development of language and literature is central to blind children as a foundation of their emerging sense of self.  However, vision impaired children have to overcome a number of barriers to achieve this. 

Vision impaired people are frequently subject to negative attitudes by other children and adults, varying from over-protectiveness to hostility and lack of expectation.

The physical environment presents a range of obstacles and hazards that make it difficult for a vision impaired child to explore and build up experiences of the world around them.

There are issues that arise from functional limitations beyond the problems of dealing with a physical environment.  In the context of reading, for example, vision impaired children are restricted in their ability to see illustrations and are less able than sighted children to rely on word pattern.

Given the problems that vision impaired children experience as a result of functional loss, the physical environment and social attitudes towards disability it is understandable that they have a basic issue of confidence and self esteem which inhibits the capacity for engaging with new experiences.

The Eveil project is seeking to identify ways in which parents can be helped to support their children in overcoming these barriers ?

 

The survey

 

This project has identified professional practice in partner countries, and professional input is especially important in learning to read Braille.  The teacher’s work, however, is made much easier with support from parents and this paper outlines current parental practice in partner countries. 

A questionnaire was circulated to project partners which was designed to be used with parents as a semi-structured instrument that encouraged open ended responses.

Altogether there were 42 children whose parents responded to the survey:

 

-        Czech Republic - 9

-        France - 11

-        Germany - 8

-        Ireland - 10

-        Slovakia - 4

 

The approach adopted in carrying out the survey was qualitative and needed to draw information from parents in widely varying circumstances whose children are within different educational structures.  The questions therefore focused on basic information and on giving parents an opportunity to expand on the issues that concern them and on how they support their children.  There were differences in how broadly groups of parents responded to the questions although the same basic issues emerged in all partner countries suggesting that there is a shared agenda of concerns that the project can address.

 

Children participating

 

No of children

42

Age range

3-12

Visual capacity

6:60 to No perception of light

Family history of vi

12

Only children

14

No in school

25

Of which, special school

1

At home with parents but with some time in a creche or with a child minder

17

Additional resources made available

Specialist advisory teachers, classroom assistants, orthoptist, ergotherapy,  physiotherapy

 

Reading preferences

 

16 are Braille only users and 12 use large print. (7 have no answer C.R) I unsure (SK). 6 children are large print +Braille users,

This question was not answered by all parents and, given the age range of the children involved, it is reasonable to assume that 8 of the children have not yet started reading but are engaged in pre-reading activities.

 

Mobility

 

Mobility has both an indirect and a direct impact on reading development. Personal confidence is linked to an active approach to learning so that a child who confidently navigates its environment is likely to approach learning confidently.  A more direct impact of mobility is the increased capacity of a confidently mobile child to relate narrative in a book to its own experience of different environments and to be able to enter more successfully into the imaginative world of story books. A child with experience of independent mobility will necessarily have a heightened awareness of the environment as compared to a child who is always guided or held by the hand.

A reference to a shop in a story, for example, will mean more to a child who regularly goes shopping and is allowed to explore independently, relying on sounds, touch, smell and seeking verbal clues. The need to draw on other senses for understanding the environment  gives a child a body of experience to enrich the reading of a story. A story involving forests might be made more vivid by memories of the tangle of roots and branches along a path in real woods in which case it may include the smell of rotting leaves and the sound of birds.  The sea might just be a description or a real memory of the power of breakers and the smells of seaweed and sound of seagulls and waves.  Depending on the experience of the individual child, the setting of a story might mean very little or might take a child into a world rich with memories and associations.  Sighted children can have these associations triggered and reinforced by pictures as well as words but blind children are unable to benefit by the enrichment of pictures.  Mobility, then, is crucial in helping a child to develop confidence and an understanding of the environment that deepens the reading experience.

 

Unaided mobility

 

When asked about routes that their children travel unaided there was a predictable emphasis on movement about their homes and gardens and, once at school, movement around their classroom.  Where school is a short distance away some children walk independently but with a parent nearby and this pattern of restricting movement to familiar areas is a common practice to all respondents.  Some parents, however, arrange situations that allow greater autonomy to children, For example, one parent waits outside a bakers shop while the child goes in alone to buy bread.

Parents were asked about the kind of support they provide when travelling with their children.  The occasions when support is provided include using the toilet, using public transport, getting in and out of cars and when in a potentially hazardous situation such as busy areas, street furniture, glass doors, poor lighting or poor contrast and uneven paving.  The support given varied from putting the child in a pushchair to holding hands, warning about hazards, giving information about the environment and encouraging use of a cane to identify hazards.

 

Mobility in social situations

Parents were asked about specific difficulties that their child encountered on social travel experiences and their responses included examples of all four barriers referred to above.

The identification of other people in the distance is difficult for a partially sighted person and impossible for a blind person.  Bright sunlight will cause discomfort for some eye conditions and darkness or deep shadows will be particularly difficult for people with, for example, retinitis pigmentosa. These problems arising from the functional impact of eye conditions were all mentioned as obstacles to the normal social use of public spaces.

The nature of the physical environment was referred to by some parents and specific reference was made to changes in the level of pavements, automatic doors, steps, sharp edges on shop display units, tree roots and traffic.

The environment also included other people either being over protective or being hostile to or dismissive of their vision impaired children.  Older people were identified as being most likely to be overprotective and have low expectation of the child perhaps due to a negative/over sympathetic attitude towards disability in general and often restrict children’s development, e.g. providing too much help when moving about, cut up child’s food etc.

Some parents referred to their children being uncomfortable in large crowds and disliking noisy environments.  This lack of confidence in social situations is not surprising given the barriers that the children face and the physical discomfort of bumps, trips and falls that they experience in trying to move around.

These difficulties referred to by parents were made more problematic for one parent whose child had additional physical disabilities that impacted directly on the capacity to move freely.

 

Investigating new surroundings

 

In responding to the questionnaire parents had many different strategies for helping their child to investigate new surroundings or explore alone:

 

-        All parents provided verbal support when accompanying their children, pointing out features including hazards, until the routes became familiar and their child became  confident enough to use routes independently.

 

-        Some parents provided tactile maps, including the use of Lego or toys to recreate the environment, or use computer images and maps. They also encouraged direct exploration of the environment to give child an idea of all the features/wildlife in the area e.g. skims stones in water, looks for crabs under rocks. In particular they encourage their children to use their hearing to identify features.

-        A common strategy for expanding a child’s experience of the environment is going on regular walks to the same location until the area is perceived as safe and secure. In one response the child is encouraged to travel with a sibling. Similarly one parent referred to always trying to go to the same spot when at the beach or on a picnic so that their child feels secure with the familiarity of the route.  Nevertheless, it was pointed out by one parent that going into new areas is stressful for their child who tends to become defensive, preferring to keep in physical contact with a parent.

 

Identifying environmental features

 

Parents were asked a specific question about creating opportunities for the child to handle objects and environmental features.  Their responses included:

 

-        Going for walks in the park, forest, river, on beach and encouraging tactile exploration e.g. examining stones,

-        Bringing their child to products on display and encouraging tactile investigation in the supermarket,

-        Involvement in daily routine e.g. posting letters, paying for products in the shop,

-        Baking to handle and mix ingredients,

-        Using the phone etc.

-        Visiting the local pet store and farm to stroke and hold animals,

-        Taking part in gardening, feeling different leaf textures and shapes,

-        Playing sports to improve co-ordination and a sense of space.

 

Despite the range of activities identified by parents many reported that their child had at some stage felt anxious and reluctant when faced by new experiences. As a result of gentle encouragement and increased exposure to materials most parents said that their child had overcome this difficulty. Parents generally preferred to use real objects rather than toys or models.

 

Strategies for explaining inaccessible environmental features or objects

 

When describing wild animals parents described features, used models and discussed the size in relation to the child’s own size, mimicking animal sounds.

The built environment and large features such as public transport systems are explained by using of Lego and toys. Parents whose children have useful residual vision use drawings and illustration and encouraging child to do the same, using programmes on TV or favourite stories to help explain.

Parents generally try to make a connection to some similar event/object that the child has previously experienced.

 

Using books

 

Children’s Reading Habits

 

-        8 children currently use regular print books,

-        13 use large print books,

-        14 use tactile/Braille books and

-        11 use audio books.

-        All children attending school take part in school textbook reading activities at home on a daily basis.

-        More than half of the group have a regular bedtime story with parent or read alone in bed,

-        10 children choose to either read independently or ask parent to read a book chosen by the child.

-        19 children are members of their local library,

-        15 are members of a specialist library service for people with vision impairment.

-        2 use the school library,

-        1 parent uses the university library where she works

 

Book purchasing by parents

 

-        11 parents buy books on a bi monthly or monthly basis,

-        21 purchase books infrequently.

-        Some parents do not feel the need to buy books, making regular and sufficient visits to the library.

 

The parents own reading habits

 

There is evidence that in homes where books are a normal part of the environment and where parents read regularly, children develop reading skills more quickly than children from homes where reading is a less significant activity. To some extent this is likely to be because those same parents who read for their own pleasure are more likely to read to their children and to convey their enthusiasm to their children. However, parenting is time consuming under any circumstances and the extra demands made by a vision impaired child further reduce the time that parents have for their own leisure pursuits.  When both parents are also working there is limited opportunity for parents to read for pleasure regularly and the response to the questionnaire is not surprising.

 

Purchasing books for children

 

Parents expressed strong views on what they found most helpful in choosing a book for their child.

 

-        Large print and bold writing

-        Colourful, clear and simple illustrations.

-        An interesting story.

-        A familiar event that the child can relate to

-        Stories about a favourite TV character/movie

-        A learning outcome

-        Tactile or interactive books (open the flap etc.)

-        Low price

-        Books that rely less on illustration but have good descriptive language.

-        Durable books that will last for prolonged use.

 

When purchasing books, parents found least helpful:

 

-        Tactile books that are not age appropriate

-        Poor contrast/colour/print size

-        Too much text

-        Crowded pictures

 

The high cost of books in general was raised by most parents with the exception of those in Ireland. Most reported that there are insufficient books available in Braille and large print.

32 parents out of the group said that they examine books prior to buying or borrowing them, thinking about how suitable they will be for their child. They expressed a tendency to buy books when there is a new situation facing the child and the examples given by parents were visiting the dentist, starting school and when someone has died.  This capacity of a story to help a child become familiar with a situation that is to be a future experience is indicative of the relationship between the imaginative world of literature and reality. It is the same relationship that enables past experience to enrich the process of reading and which makes it so important for children to have a wide experience to bring to their reading.

 

Helping children understand pictures

 

Parents responding to the questionnaire provided details of various strategies employed when helping their child to understand pictures used in books such as:

 

-        Encouraging use of a low vision reading aid

-        Explaining visual content in detail

-        asking child to tell what’s happening in the story and filling in the missing pieces,

-        asking what the child can see and bringing their attention to the things they cannot by using a magnifier or providing description,

-        making drawings of visual representations that the child cannot see or poorly illustrated images,

-        helping the child to trace with their finger,

-        using previous experience to further explain,

-        placing a lot a emphasis on the text,

-        using object reference,

-        using actions to re-enact the story.

 

When asked whether they, the parents, generally explain or describe events/objects/characters in stories or prefer to explain when the child takes the initiative and asks, parents indicated that while parents would offer explanation the child would generally ask.

 

Helping to understand the narrative

 

Parents encourage their child to expand their answers to questions about the story, asking the child to retell the event in their own words or question child in detail in order to determine if concepts are understood.

14 parents have previously adapted a book to suit their child’s needs using the following strategies:

 

-        Used the child as the subject in the story

-        Omitted some text which they felt was inappropriate

-        Used other books to offer further explanation

-        Used more dramatic expression to create interest

-        Used object reference

-        Enlarged print and images

-        Introduce games from the story

-        Used magnifiers

-        Added tactile detail

-        Introduced certain tactile elements to represent colours e.g red = velvet

 

Understanding what a child can see

 

Parents were asked if they have a good understanding of what their child can and cannot see.

 

-        12 parents answered that they had a good understanding,

-        23 that they were not always able to tell what their child could see.

-        The question was irrelevant to parents of children with no perception of light although they may have answered that they had a good understanding.

 

Some parents would like to know about the quality of what is being seen and described how they tried to understand their child’s vision:

 

-        Learning this on a daily basis through experience

-        Some have used simulation spectacles and found them helpful.  

-        Close their eyes to examine objects/environment.

-        Asking the child to describe what they can see.

-        Many parents report that they are waiting for the child to be older in order for him/her to be able to explain more clearly what he/she sees.

 

The problem of understanding what visual information a child receives makes it difficult for parents to understand the ideas their child has of the world. Children only talk about this broader understanding on rare occasions during a conversation, e.g. an example given by a German parent of their child being afraid of the staircase because they thought there was a hole through which they could fall down onto the floor below.

 

Support for parents

 

When asked about ways in which their ability to support their children could be improved, parents made a number of suggestions, most of them made by several parents.

 

-        Training in the use of low vision aids

-        Increased availability of large print books

-        Making school reading more fun

-        Strategies to help make the child more interested in reading

-        Better quality local library books

-        Age appropriate stories

-        Advice on the choice of books, sites, libraries etc. with classification by age

-        A forum for parents about reading for children with VI..

-        Assessing the child’s vision

-        Stimulating movement

-        An understanding of basic concept development and implications for VI children

-        Learning about tactile graphics and how to adapt books

-        Support for parents to learn Braille and use of Braille possibly alongside their children before reading/writing competence

-         Double format Braille and print books in order to read together with the child

-        To have more time with the child

 

Learning to read is a skill that develops out of earlier language centred skills and more advanced reading relates to the reader's wider experience, the richness of the reading experience being proportionate to that wider background experience.  To enter a world of imagination through stories a child needs to draw on experience but accumulating such experiences presents additional problems for a blind child.  Nevertheless, the parents who responded to the Eveil questionnaire were conscious of the problems they faced and collectively provided a range of support mechanisms that would help them to encourage their children to develop more confidence and become more autonomous in addition to specific suggestions related to supporting the development of reading skills.

 

Conclusion:

 

The most enlightening discovery following the interviews is that parents themselves are very knowledgeable about the functional effects that vision loss has on their child. More importantly their feedback about strategies being used to overcome difficulties demonstrates the importance of such content in the production of literature concerning issues about parenting children with vision impairment.

Despite this discovery only 12 parents report confidence in understanding what their child can/cannot see. Typical responses suggest that parents rely heavily on acuity measurements from the ophthalmologist and the belief that their child will be able to tell them what they can or cannot see when they are older. Both of these strategies find the parent quite dependant on clinical measurements and perhaps waiting for information that their child may never be able to tell them. The parent is the one constant in the life of the child and so professionals need to help parents to process their knowledge of what the child can or cannot see based on experience and observations. It is important to appraise the parent in their role while also helping them to feel more confident about relaying this information to professionals working for the first time with their child as well as other to parents looking for support.

In relation to parents helping their child to understand the world that is beyond their range of vision, it is clearly understood by parents of children with no vision that there is a need for them to provide description and added commentary in order to fill in the information that the child is missing visually. The challenge for parents is in knowing the best method of delivery for this type of information. For parents of children with some remaining vision the situation is somewhat different. The parents are often unsure what amount of information is gathered by the child and consequently how much additional information they need to fill in. 

The lack of availability of suitable reading material was mentioned by most parents with many reporting that they adapt books themselves to meet the requirements of their children. This reinforces the importance of work such as project EVEIL in addressing needs that cannot be met in a short time frame or where high production costs would make suitable reading material inaccessible. The development and delivery of workshops through this work package therefore is based on parents’ requirements in helping to assist with language and concept development and to promote and improve literacy skills.

Many of the suggestions by parents on how they feel they would be better supported cannot be addressed directly through project EVEIL. For example, increasing the availability of large print books or having more time to spend with their child. It is however necessary for us to make these needs known where individuals or organisations are better placed to assist so they can address these issues more appropriately.

The workshops being developed by partner countries Ireland and Germany will aim to address the following requests for support by parents identified through the  interviews that took place in all partner countries:

 

-        To provide parents with an understanding of “concept development” and its’ importance in the acquisition of life skills for children with vision impairment.

-        Strategies to make independent reading fun

-        Helping parents to assess their child's vision 

-        Haptic training for the child

-        Learning about tactile graphics and models and how to adapt books

 



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