Cerebral visual impairment in children: the development of optimum management strategies
Setting the scene
The brain plays a major role in interpreting visual information. Problems experienced by children with cognitive visual dysfunction, due to cerebral visual impairment, may be overcome using advice drawn from parental experience.
Forty families shared their knowledge in developing strategies to improve the quality of life for the visually impaired child.
The research aims to enable the child to negotiate obstacles, navigate around school and home, recognise people, and to enhance selfconfidence and social skills.
Resolving the problems
There are common recurring problems experienced by children and young people with cerebral visual imparement (CVI) and their carers. The researchers aim to offer successful solutions and some examples of unique tips, plus implementation of ideas that the families/carers themselves have deployed.
Children having CVI, were identified from a paediatric ophthalmology clinic as those having symptoms from impaired processing of visual information. This caused varying problems with clarity of vision, colour vision, contrast perception, field of vision, movement detection, visual memory, crowding, dealing with complex visual scenes, visual fatigue, recognition, orientation and mobility in the three dimensional world. Their conditions had many causes, such as spastic diplegia, hemipleigia, quadripleigia, hydrocephalus, prematurity, hypoxic ischemia, encephalitis, meningitis, acquired brain injury, congenital, genetic or causes unidentified. Every child exhibited a range of these problems to a varying degree and many of the problems diminished with age, but all had associated social problems. The parents of these children had many coping strategies to improve their child’s everyday experiences.
All parents emphasised how socially debilitating these problems are, even in more mildly affected children. The importance of communication with those in regular contact with the child was essential in order to share coping strategies. The children were often labelled as naughty or disruptive, due to lack of understanding on the part of the teachers. Some schools had been very supportive, others less so. Parents felt a definite medical diagnosis would help this, but were also cautious about labelling their child. The children often required extra equipment at school and a special locker was useful to store this, so the child was less self- conscious. Attempts to include the child in all activities are important and this requires adjustments to teaching style. Allowing the child to partake in discussions and answer questions in class is important, even if it takes time, identifying problems, and encouraging the child to overcome them is essential.
Constant reassurance is important. Several parents helped their child with difficult situations by making up stories where a hero had a similar problem and managed to find a solution. Visualisation was used as a technique to overcome problems by some. Parents helped children by identifying specific tasks they could not do so they could be repeatedly practiced, to avoid self-consciousness. This varied from using scissors to playing party games.
Outcome of attendance at a vision clinic
All families were asked if the attendance at the vision clinic and the report provided had been a positive or negative experience.
40 = Positive 0 = negative
A resounding positive was reported by all families, even when the information about their child’s visual ability may have been less than they had hoped for. The considered opinion appeared to be that the provision of the facts had given them a starting point to build from.
It is important to note that it was this question, which provided the most emotional response from the families. During this part of the interview many of the families became upset when they recalled the journey they and their child had had to date. This often centred around their frustration to get other people and professionals to acknowledge their child had any problems, or required appropriate support. The families were also upset that sometimes they had blamed their child for bad behaviour, while not recognising the triggers behind it.
Moving on from this however, the families could reflect on the new knowledge they had gained and the relief of having someone listen and explain, in clear and meaningful language, the visual functioning of their child.
Families also felt that the individual report and time taken to speak directly to their child and seek, where possible, their opinion had contributed to a feeling of being taken seriously. They appreciated the collaborative discussion and inclusion of beliefs.
Professor Dutton’s sympathetic and plain language communication style was often noted as being of an exemplary standard and all families stated they hoped other professionals could consult in this manner.
The overall hope expressed by the participants is that the awareness of CVI will spread among professionals and that there will be increasing resources and education forums.
The visual system
The primary visual pathway begins with light entering the eye and stimulating the retina. The visual information passes along the optic nerves, chiasm and optic tracts to the lateral geniculate nuclei, then via the optic radiations, to the occipital lobes.
Higher visual processing takes place in adjacent brain areas. Two pathways are central to this process: the dorsal stream and ventral stream. The dorsal stream runs between the occipital lobes and the posterior parietal lobes, which subconsciously appraise the whole visual scene along with all other sensory inputs, providing the facility for the frontal lobes to choose the components to pay attention to. This area computes the location of components of the visual scene and thereby facilitates visual guidance of movement. It does this by passing the coordinates of three-dimensional visual space to both the motor cortex to plan and bring about movement of the body, and the frontal eye fields to generate rapid, accurate head and eye movements to chosen targets in the visual scene.
A part of the scene is chosen, for example an apple, and the information is passed to the frontal lobes, which instruct the head and eyes to look at it. The apple’s co-ordinates are passed to the motor cortex, which initiates hand movement and accurate reach with pre-adjustment of finger position, to grasp the apple. (The ‘picture’ of the apple is inside the brain. The miracle of vision is that this becomes coincident with reality, so the apple is lifted by successfully shaping and moving the hand to emulate the ‘picture’ within the mind).
The ventral stream connects the occipital lobes to the temporal lobes, which contain the brain’s ‘visual library’. Information transmitted here allows recognition and visual memory of what is being viewed.
Recognition of faces involves image data passing along the ventral stream into the temporal lobes (commonly the right) where it is compared with data concerning all known faces stored in the fusiform gyrus. If there is a match, the face is recognised. Recognition of shape and form and the ability to recognise and follow routes are likewise temporal lobe functions.
Damage can affect any part of this overall visual system in any combination and degree, giving rise to a wide range of patterns of visual dysfunction.
Examples of some of the problems encountered in the home environment are listed in the following table, together with solutions and modifications for individuals given by parents:
| Difficulty going down stairs |
Handrails on both sides to guide foot placement, plain carpet, good
lighting to enhance stair boundaries, highlight treads with bright paint or bright dots on middle of step |
Wooden or plain stairs without pattern. Verbal prompts to remind child to slow down and hold hand rail. Spotlights at landing and base of stairs, to create enhanced depth perception. Coloured marker on floor at last step to indicate end. |
| Tripping on floor surfaces and
boundaries |
Remove patterned carpets to provide plain or laminate floor surface, ensure good lighting, talk child through ‘trouble spots’ with verbal clues to remember as prompts. |
Place picture or symbol to represent obstacle at child’s eye level to act as a visual prompt. |
| Bumping into furniture |
Reduce amount of excess furniture, consider shape of furniture and
furniture. Colour contrast with flooring, no sharp edges or glass furniture, consider ‘traffic flow’ through the rooms and allow adequate space. Not moving furniture. |
Involve child in room organisation. Consider coloured ‘room trails’ on the wall for child to follow to lead to different rooms or put coloured foot prints on floor as foot guide in tricky spots. |
| Can’t find toys, books etc in bedroom |
Plain walls, floors and bedspread, remove excess furniture, organise
things in ‘zones’ eg clothes zone, toy, schoolbooks. Spotlight key areas. |
Child helps to organise room their way Choose different paint colours e.g. pastel for calm environment and bright for contrast. |
| Difficulty enjoying T.V
programmes |
Large screen TV, Flat screen if possible, let child sit up close to the TV to screen out surrounding visual clutter. |
Try small TV if large screen is too much to scan. Try different programmes e.g. cartoons or films before 1975 (when the
zoom lens was patented). Join film club, look for old videos etc at jumble sales. |
| Difficulty going over uneven
surfaces in the garden |
Ensure good access to garden, handrails if required.Minimise height variations or provide safe level area
Ensure safe ground cover. Provide coloured foot-steps or hand rails to follow to different areas. Have scooters (to walk with) or push toys to provide stability when moving about. |
Try ‘astro’ turf or bark or rubber play mat
Try them in different colours. Use bright fencing or flush rubber flagstones to ‘zone’ areas. |
| Tripping over obstacles |
Use scooter, dolls pram to push. Provide safe ‘storage zones for older children to keep toys in when not using (tidy up). Encourage a policy of ‘slow, look, check, go’ using verbal prompts. |
Plan obstacle courses for fun and to develop spatial awareness and
observation skills. Encourage use of crawling through and climbing over toys. |
| Difficulty seeing things in the distance e.g. bird in tree, plane
in sky |
Family member takes picture on digital camera to use (can enlarge on screen) use video with zoom to locate object with the child. |
Child can learn to use camera for themselves. Use verbal prompts and large visual targets to ‘cue’ child to correct target. eg. look at red roof, then blue road sign etc Give time to process; don’t rush on to next object or give up too soon. Encourage the child to select a distant target for family members to find (can scan with a video camera). |
Problems which may be encountered in school and strategies:
| Difficulty going down stairs |
Handrails at all steps, fluorescent highlight paint on edge of steps. Allow child
to leave early from class or later to avoid the crush. Supervision from support teacher with verbal prompts to assist child. School ‘buddy’ for transition time. Good lighting, minimal wall decoration around stair wells. |
Move classes to ground level (where possible). Use of lifts or stair climber. |
| Cluttered class environment,
bumping into desks etc. |
Move furniture to allow ’flow through’, decrease amount of clutter on walls to allow background contrast for furniture and minimise distraction. Place child’s desk closest to access point and teacher. Try footprints to lead to desk. Use symbols, picture or colours to indicate storage areas for materials. Plain
flooring. |
Involve child with layout and choice of symbols for storage zones. |
| Difficulty focusing on blackboard and teacher |
Place child at front of class facing blackboard and teacher to prevent looking over/between other heads and objects. Provide chair with arms to help child ‘sit in middle’ so they cannot fall off and can concentrate on ‘looking’ and’ listening’. |
Provide separate desk (can still be situated beside neighbour) or ensure large surface area on double desks to prevent distracting ‘elbow bumping’ and peripheral distraction caused by movement of a ‘wiggly’ neighbour. Consider portable ‘work screen’ to assist with above |
| Difficulty copying from
blackboard. Difficulty seeing computer screen |
Position child face on within close proximity to reduce clutter and increase magnification. Remove distracting wall coverings around board. Consider ‘white board’ for different contrast. Provide material on handouts to reduce unnecessary copying of material. Check lighting around board Use mat computer screen to block glare. |
Classroom assistant to help with scribing or keeping child’s visual attention to target. Teacher not to talk and write on board at the same time to allow visual sense to be the maximum focus. |
| Regularly looses school
materials |
Use portable screen to demark desk area. Use coloured tape to mark
placement zones e.g. jotter in red box, pencil in yellow rectangle to right etc. Provide labelled storage tray etc with personal colours or pictures for child to store and return materials to. |
Encourage child to only have current items required on desk. Provide clear pencil case with a white cardboard insert. Use
coloured coded paper to cover school books or use a picture or clear symbol to assist visual recognition. |
| Fatigues easily, become overwhelmed visually
and sensorially, Behaviour deteriorates |
Allow child to place head on arms for ‘time out’ at desk. Let child move from desk to designated ‘quiet zone’
Change activity to less demanding one and return later when refreshed Consider content of teaching day and do not do too many intensely visually focused tasks in a row. Allow for some gross motor physical movements to ‘calm down’. |
Ensure time out zone is viewed positively and used by other children
Involve child with design of zone, colour choice and, position and seating etc Encourage use of ‘traffic light’ system e.g. child can say I am feeling ‘green’ for go, ’amber’ for tiring and ‘red’ for stop. This allows the child to express how they feel as a single word. |
|
Difficulty accessing playground and playing |
Handrails at steps, smooth pathways, clear boundary markings. Handrails for path guides or footprints etc Soft zone for safe play. |
Bright paint on railings, designated play zones. Accompanying classroom assistant or ‘play buddy’ push along toys available to walk with. Suitable activities accessible for CVI children. Involve child with what they would like. |
Leisure time and travelling, examples of problems and strategies:
|
Difficulty with team sports and ball games etc, lack of leisure pursuits |
Riding: child can feel movement from horse, good view of the world around, horse does movement and child can experience moving safely through their visual environment. Good for posture and balance as well, movement of horse can help with visual fixation. Swimming; great for body awareness can help with visual spatial skills when completing under water obstacle courses. Ballet and Tae Kwon Do: good for balance, core stability, movement through space and stamina. |
Try riding for the disabled for expert tuition for all levels of ability. Look for special needs class, 1:1 lessons or go at a quiet time of day. |
|
Difficulty in busy environments. Disco/ birthday party |
Take child to venue first when empty. Arrive early and introduce to people as they arrive, plan an ‘escape’ route if too busy. Talk child through stages of activity, use ongoing verbal prompts to reassure. |
Limit time spent to suit child Prepare them for loud noises and flashing lights or ensure they will not be part of the event but can simply observe. Explain your child’s needs to organisers. |
|
Difficulty attending cinema/ theatre |
Check content of film e.g. cartoon with bright colours or film with a darker background may be preferred, where others have identified the opposite, to decrease amount of visual stimulation. Sit at front for full attention and no heads to look over, or choose back for quick exit. Try ballet or mime show rather than fast paced pantomimes. |
Arrive early with lights up so child knows where they are going, or arrange for back seats at door and arrive in darkness as main feature begins to prevent over excitement. |
|
Difficulty recognising facial expressions |
Ask child to concentrate on tone of voice, use words to verbalise what you are feeling. |
Inform other parents/ group leaders and ask them to be aware of this and assist your child. |
|
Difficulty walking outside |
Hold onto elbow of partner (not hand) or pocket of jacket or belt. Take a scooter or pram to push. Try hiking stick or hockey stick to feel the height of the ground ahead. |
Get the child to make his own ‘hiking stick’ to use on country walks. Use verbal prompts or physical cues such as tapping the shoulder, when obstacles occur. |
|
Difficulty recognising faces or finding people in a group |
Stand in same place when collecting from school. Clap, have special wave. Call name or special call sign if name is confusing. |
Wear the same bright scarf, or carry large bright bag. Try a hat. Stand apart from crowd. A bright item of clothing (coloured anorak) allows identification from all angles. |
|
Difficulty finding your way |
Use digital camera to make route map of familiar sights, or ask child to draw a map with pictures they recognise. Let child lead the way and use their own verbal or visual cues, use mnemonics or rhymes. |
Present pictures sequentially to child at each stage or compile into map. Look out for the sequence of shop symbols instead. e.g. start at MacDonald’s go to the O2 shop etc. |
|
Difficulty in busy environments |
Ask child to pick their own route through the supermarket e.g. start at magazines, look for bananas, go to crisps etc. Provide verbal encouragement and prompts ‘what are we looking for?’ Bring comfort toy or involve them with selecting a treat if panic starts. |
Consider time of day (early or late). Try small corner shop, Use motivating shop to encourage participation e.g. Games store. Slowly build up exposure time. |
Activities required for daily living examples of problems and strategies:
| Difficulty finding clothes. |
Hanging vertical wardrobe pockets with the day’s clothes inside, stored from bottom up
Hang clothes in groups and colour matched in wardrobe to limit visual confusion. Place a days outfit on the one coat hanger, do this for sports clothes, smart wear etc. Place clothes in accessible drawers eg. tops in top, vests in next drawer, pants next etc (do not put too much in at one time). |
Place shoes at eye level Use best label type e.g. real pictures, drawings or colour coded or black white symbol, even numbers e.g. 1=pants, 2= vests. Dress part of child but let them finish rest (easiest articles first). Consider a new child selected outfit to increase motivation. |
| Missing food on plate |
Plain plates. Use coloured place mat under plate to highlight. Teach child to turn plate. |
Keep foodstuff separate (don’t overlap). Think of bright foodstuffs not all beige etc |
| Completing homework
independently |
Clear ‘work zone’ in bedroom and ‘walls’ round the computer. Use
labelled shelves for storing schoolbooks or plastic storage boxes. Use spotlights. Ensure all school based equipment is available e.g. Typoscope, sloping board etc. |
Cover books with coloured coded paper, symbols or pictures to speed up selection
Factor in breaks; choose optimum time of day where possible, the child may need a physical activity prior to settling down. |
| Difficulty selecting and playing
independently with toys |
Keep background plain e.g. bedspread, carpets etc, store in clear
boxes, Only put a few toys out at one time (rotate them). |
Try clear boxes or labelled toy cupboard with groups on shelves. Put pictures or numbers on boxes. For younger children select simple non-complex toys i.e.
2 properties max e.g. Post and collect. Beware of toys which over stimulate or are too ‘busy/noisy’. |
| Difficulty reading for pleasure |
Ensure optimum print with optimum spacing between words and
between lines not exceeding the amount of text the child can cope with. Photocopy and enlarge type size. Look for clear pictures with not too much ‘fuss’. Have school based aids available at home as well as school e.g. magnifier etc. |
Photocopy a few pages at a time and encourage child to increase the amount to read to provide sense of achievement and increased concentration. Compile ‘Tailor made book’ for your child. |
Conclusions
Cerebral visual impairment is a poorly understood condition, which encompasses a wide range of problems. Our children were identified from a paediatric ophthalmology clinic as those having symptoms from impaired processing of visual information. This caused varying problems with clarity of vision, colour vision, contrast perception, field of vision, movement detection, visual memory, crowding, dealing with complex visual scenes, visual fatigue, recognition, orientation and mobility in the three dimensional world. Every child exhibited a range of these problems to a varying degree and many of the problems diminished with age, but all had associated social problems. The parents of these children had many coping strategies to improve their child’s everyday life. Finding something the child could excel at was helpful and boosted confidence. Many children found comfort within a well-known peer group but excluded themselves when they felt uncomfortable in larger groups. Some enjoyed team games, while others did not. It was important to find activities the child enjoyed and to promote these.
The parents all agreed that the discussions had been very helpful. They found it reassuring to hear of other families with the same problems, and helpful to share coping strategies. They felt that support groups for families of children with CVI would be useful and suggested improved access to information and resources for their children.
There is still much to be learned about CVI, but these discussions with parents provided a great deal of insight into the range of symptoms that these children might exhibit. More importantly, for those involved in their care, it highlighted the daily problems these children experience and some strategies to overcome these.
Project design
Parents of children with cognitive visual dysfunction were invited by letter, to take part in discussions concerning the management of their child’s condition. An information sheet was enclosed, and parents were requested to return a consent form, with the assurance that all personal records held on the database would remain confidential and secure. Participation was purely voluntary. The majority of interviews were conducted by telephone.
Ethical approval of the questionnaire and procedures was given by Yorkhill Ethics Committee.
This information is not meant to replace the advice of any physician or qualified health professional. The information provided by Cerebra is for information purposes only and is not a substitute for medical advice or treatment for any medical condition. You should promptly seek professional medical assistance if you have concerns regarding any health issue.