Cerebral Palsy and Visual Impairment in Children: Experience of Collaborative Practice in Scotland
Chapter 7 Learning from Observation by Eleanor Douglas, Mary Lee and Lindi MacWilliam
Learning from Observation
The visual development of children with cerebral visual impairment (CVI), who have cerebral palsy and additional disabilities, (sometimes referred to as children with multiple disabilities), will be inextricably linked with their understanding and ability to make sense of their environment. Seeing for many of these children does not happen easily and effortlessly, but is likely to be a complex learning process, and one in which they can benefit from skilled input and guidance.
Children with CVI do not fit neatly into categories, and one off assessments will not always be sufficient to give a properly detailed picture of a child’s visual functioning. Ongoing observation within everyday routines at home and at school can give us a fuller picture and should form the basis of each child’s individual programme. One of the extra benefits of this kind of observation is discovering how much the children can teach us about themselves, and it is a continually fascinating process.
A multi-disciplinary approach
For this kind of assessment to be genuinely useful it must involve all those who come into contact with the child during the course of the day, as they will be viewing the child in different contexts and perhaps from different perspectives. This is particularly so in the case of parents, whose input will be vital, since their child spends far more time at home with them than in school.
It is important that any multi-disciplinary assessment team should include the child’s teacher. He or she has the advantage of daily contact with the child and can co-ordinate regular observation of the child’s use of vision during everyday tasks. All staff and therapists can be involved through the use of a readily available record sheet. This information can then be passed to the multi-disciplinary team. In the same way, any questions that arise during more formal visual assessment can be passed to the classroom team as points to look out for during everyday activities. Parents should always be involved in this process, either by being present during multi-disciplinary assessment or through the use of a questionnaire that invites them to give their observations in a number of areas of the child’s development. Multi-disciplinary assessment must look at all areas of a child’s sensory development. For different children, vision will play a greater or smaller part in their ability to understand and function within their environment.
Problem-solving through detailed observation
1. Know your child
Before starting detailed observations, it is important to ascertain some information about the child. Try to gain:
- a knowledge of the nature of the child’s visual impairment and, if possible, a knowledge of the extent and type of brain damage;
- a knowledge of the child's approximate developmental level;
- how the child communicates pleasure, excitement, interest, distress, etc;
- what motivates the child?
- physical considerations: type of cerebral palsy; is one side affected more than another, in which position is the child most comfortable or appears most visually aware?
- an indication of the child's hearing;
- an awareness of seizure activity and how this might affect responses;
- an awareness of the length of time the child takes to process sensory input;
- an awareness of child's 'good' times of day, eg: is he/she more alert in the morning?
- an awareness of the child's state of health mood, etc
- the child's level of distractibility and ability to concentrate;
- where does the child appear most responsive, eg: in quiet area?
- does the child respond differently with different people?
The following situations can be particularly useful for observation.
Meal and snack times
- mouth opening to spoon; orientation, distance, route to mouth;
- does mouth open: to hand without spoon? with other object? outside the eating situation?
- reaching for food;
- note distance, position of hand or spoon - moving or still?
- size, background contrast, of food on plate, eg: crisps, fruit, bread, etc;
- visual field can be tested by spreading finger food out;
- note head position during reaching or searching.
Corners with hanging objects:
- note signs of visual attention, eg: stilling, focusing, tracking;
- What kind of objects are involved?
- is it better if they are moving or still?
- observe optimum distance, size;
- observe several times in the area and compare.
- does the child appear more visually aware when sitting up, on their back/front, over a wedge, well supported, etc?
- is there more response to objects hanging or on a surface in front?
- note the child’s ability to reach accurately to object.
- what is the child’s favourite type of play/activity, eg: moving around, lying on floor, play involving moving objects - rolling balls, carrying particular objects around, etc?
- what are the child’s favourite types of objects, eg: tubes, string and threads, bricks, sound making objects, switches, real objects, books, etc?
- does the child appear to see better in a quiet room?
- does the child recognise an object and then reach or move towards it?
- does the child move to a particular area to find a specific object?
- does the child recognise a familiar object in an unfamiliar place?
- does the child appear to recognise objects more when moving around?
- note the child’s head position when looking;
- at what point does the child bump into objects?
- does the child experience difficulty with changes of floor surface?
- how does the child negotiate steps or height changes?
- is the child aware of the adult moving? At what distance? Note tracking abilities.
Interactions with an adult:
- observe during 1:1 interaction sessions, massage sessions, changing times, physiotherapy and passive exercise sessions, etc;
- what is child’s preferred position at these times?
- eye contact and focusing;
- awareness and imitation of mouth movements;
- awareness of hand movements;
- at what distance and with what clues does the child identify the adult.
Observe visual acuity and visual field, depth and distance perception, contrast vision:
- this can be observed through activities such as peg boards, threading, sorting and matching, fitting objects together, filling and emptying, etc;
- Note the child’s painting and drawing skills. Is paper filled or limited to a small area? Note the movement potential of his upper limbs to reach the corners of the paper.
- the simplicity of the picture
- lack of 'clutter';
- good contrast and clarity;
- size of picture;
- how are pictures recognised? are they learned by rote? which visual clues are used?
- how close the child is, head position, which eye is being used.
3. Considering the child's learning style
All children have their own particular strategies for accessing information and their preferred ways of exploring and interacting with their environment. These differences can be seen in a range of everyday play situations. A group of children playing at a sand tray, for example, will play in many different ways. Some will want to dig holes and bury objects, to build sandcastles or make patterns or ´roads═ in the sand. Others will want to experiment with filling, emptying and pouring. This play may reflect the child’s developmental level, but it also points up individual interests and methods of experimentation. These are the individual child’s style of learning.
This preferred style of learning can affect or be affected by the way an individual child’s vision develops, and will have implications for those working with these children, in terms of both assessment and input.
Their visual ability and their perceptual understanding will influence the way that visually impaired children learn. However, other kinds of sensory input and especially their individual interests, likes and dislikes will also be crucial. Information about the child can come from the parents and those who know them well, but detailed, ongoing observation is also vital. By using an approach, and structuring an environment that complements and makes use of the knowledge gained from these observations, we can begin to encourage the children to use their vision more effectively. There are certain elements which are important to all aspects of learning, that appear to have particular relevance to the learning strategies used by this group of children. They are:
The following case studies show the importance of these elements in the visual development of two young children.
Case study: Moira
Moira is a little girl with limited movement and who is just beginning to develop speech. She is an anxious child, very dependent on a familiar and predictable routine, but also very sociable and loves adult attention.
When Moira first entered the pre-school unit, her parents felt that she may have been aware of people moving around the room, but reported little other visual awareness. It soon became apparent that Moira was indeed aware of people’s movements, but that she was using additional auditory clues to ´cue═ her into this. She was very alert to familiar sounds, such as doors opening and the footsteps and voices that preceded people coming into a room. She was able to follow them as they moved around, even at a distance, but at the same time she appeared oblivious to objects moving across her line of vision that were much closer to her.
At this time, if someone familiar was seated in front of Moira when she was in a play area, she appeared completely unaware of them until they spoke to her, at which point she would shout out their name and demand attention! However, she was able to identify different people, without hearing their voices, as they came in and moved around a room.
The improvement in Moira’s functional vision went hand in hand with her general understanding, but proceeded in a way particular to her.
In the first place motivation was paramount, and in her case this came in the form of people, and the attention they gave her. Movement was also crucial in enabling her to become visually aware in the first place, and at a later stage it is likely that by focusing so much of her attention on the way people moved, she was actually using this knowledge to help her to identify and recognise them. This was reinforced by her inability to recognise or even be aware of someone sitting still, although quite close to her. Sound, in the form of different footsteps, and the direction they came from, also helped in identifying the person, and these auditory clues helped her to build up visual images of the different people.
In Moira’s case two further elements seemed to play an especially crucial role in the development of her vision - routine and context. She learned that at certain times of the day, particular people would come into the room, for example, someone coming in for an individual session after break or for a group session after lunch. She was able to use sound and movement clues and link these to a visual image of their face, because it was in context, and because it happened at regular times everyday (repetition). If a person came in unexpectedly she would have been unable to identify them. She seemed at this stage to have a visual image of the person that she was expecting, and was thus able to link them to the "real thing".
As her understanding and visual ability developed she soon learned to do without the other clues, and was able to identify people and objects in any context, even extending this to pictures. However, in the early stages the elements discussed were of paramount importance in encouraging her to use her vision, thus building up a visual memory and enabling her to make sense of what she was seeing.
Case study: John
John was a four year old boy in a pre-school setting. He had cerebral palsy, was severely developmentally delayed and also visually impaired. He had no independent mobility, was unable to sit without support, but had good head control. He was a very sociable little boy, who was motivated by sound, and above all by food. He showed little response to anything other than a bright light within a dark room.
John was unable to hold a spoon and needed an adult to feed him. The adult was seated in front and slightly to the side of him. Observation of him at mealtimes confirmed that John was opening his mouth at the exact moment that the spoon reached his mouth. Any chance of sound or touch being involved was eliminated, and it became clear that John was seeing the movement of the adult’s hand and was able to judge accurately when it reached his mouth. He was only able to do this if the angle and direction that the spoon approached from was consistent.
When a similar situation was set up outwith the context of the mealtime, John did not at first react. However, after a few weeks when this was repeated he opened his mouth on cue. The orientation and trajectory of the movement was then changed, so the spoon approached John from a different side, or from slightly above or below eye level. John quickly adjusted to this change and soon learned to see the spoon approaching from slightly differing positions and he would open his mouth at the appropriate time. As long as the basic movement pattern was the same, he was able to visually process it, even though it was made in different areas of his visual field.
The most powerful elements that were at work in helping John to see were motivation, repetition and movement. Context was equally important in the early stages. These elements acting together meant that John learned to see this particular movement, and was able to generalise this to other situations. Shortly after this, it was observed that one of John’s favourite play activities was moving his arm up and down, over which had been draped lots of chains and beads, so that the objects hit against a surface, making a considerable noise. Sound played an important part in this game, but he also appeared to be visually aware of the rhythmic up and down movement of his arm in front of his eyes. His visual awareness was being enhanced by a movement pattern that resulted in a rewarding feedback.
4. Consideration of the environment
Determining how and what a child with cerebral palsy and associated visual impairment is seeing is a complex task, but as the above case studies indicate, careful observation can teach us a great deal about the environmental influences that will encourage the child to make the most of any vision he has. We can, therefore, go a long way to meeting the child’s needs through consideration of the environment in which he lives and learns.
The environment should be looked at from a multi-sensory perspective. It is important to provide opportunities for developing the use of other senses. The principles outlined for vision are relevant for the other senses as well.
5. Learning strategies
It should be borne in mind that most children with CVI will need a longer time to process visual information and to integrate sensory input. Activities should be demonstrated slowly and carefully, ensuring that the child is following the steps in the process. When presenting a visual stimulus to a child, allow time for the child to respond to this.
Visual tasks can be very tiring for a child with CVI and this should be borne in mind when structuring tasks that involve the child in the processing of visual information. Ten minutes on a visual task is enough for some.
The child’s interest and involvement in activities and stimuli provided by the environment is likely to be related to the amount of control he has over them. For example, he will probably find it more satisfying to watch a ball that he is banging vigorously on a table, than to watch something that floats past his line of vision. If a child is allowed to handle an object, the eyes are drawn to the hands and the child will hold it where he can see it best.
In the everyday environment, it is important to think about how much control the child really has over what he is doing, where he goes and whom he is with. The more independence he develops in mobility and general life skills, the more he will be motivated to use his vision to its full potential.
Daily routine, both at home and at school, can help a child to begin to anticipate what will happen next and to feel some measure of control over it. The routine should comprise whatwill happen, when and with whom.
The activities that go to make up the child’s routine can in themselves be structured. For example, learning to build a tower or learning to wash his hands. The adult should use the same language and sequence of actions each time the task is carried out. The sequence can be carried out with the child’s hands over the adult’s so that the child learns the motor patterns required. This can be particularly useful for the child who tends to look away when reaching for an object. (If a child looks away, do not follow with the object. The child may be using his peripheral vision to monitor the activity.) Once the task is understood then vision is more likely to be used. Adult support can be gradually removed.
Motivation can be a strong factor in encouraging children to use their vision and build up a visual memory. An object that has become associated with fun or enjoyment may be easily recognised, whereas other objects appear not to be worthy of attention. Objects are more likely to be recognised when they have been made a part of an enjoyable interaction because, through this, they will have acquired significance and meaning.
It can be a feature of CVI that the child cannot recognise faces and/or facial expression. If this is the case then the voice can be used to help the child identify familiar people, making sure that the person speaks before approaching the child. Most children, including those with an additional hearing impairment, will use touch and smell to recognise familiar people. Intonation in the voice can also be used imaginatively to convey emotion and to make language more meaningful. A tactile sign system should be considered for any non-verbal child with visual impairment.
Using other senses
It is important to take account of those senses a child uses most easily. These may be touch and feel, taste and smell, vision or hearing. Consider carefully the tactile qualities of an object that the child is expected to look at. If he does not like the way it feels, then he is unlikely to want to look at it. Tasks may need to be broken down to involve sensory input through only one or two channels. Sound, for example, may be useful as a means of initially attracting a child’s attention to a visual stimulus. However, some children, once their attention is engaged, will be more likely to maintain focus and track the object, if there is no sound. Both looking and listening at once can be difficult in the early stages.
6. Presentation of materials and activities
Children with CVI vary in the amount of sensory information they can absorb at the same time. They may, for example, find that using their vision in a busy room is very difficult because they are intent on listening. For these children, the creation of a quiet, distraction free area, where they can concentrate on using their vision, is very important.
When handling objects, some will only be able to cope with one object at a time, in order to be able to take in the various properties of the object. Others, however, may require and prefer to be surrounded by a variety of objects in order to make choices and comparisons.
The physical environment should be carefully organised to ensure that there is clear colour contrast, good lighting and that objects are presented in the best way to take account of the child’s optimum viewing position. This may involve a sloping surface, hanging objects, or storing equipment in the same place after each activity. If a child has difficulties in his lower visual field, then keep the floor clear of clutter. Those children who have difficulty with depth perception are helped by the provision of, for example, well-contrasted tasks, objects, stairs, etc, in their environment.
Many children need to constantly repeat activities in order to gradually absorb all the elements of a task. The more complex their disabilities, the more repetition they are likely to need. Children with CVI may well have problems integrating sensory information, and repetition will help them towards this goal. The sequencing of the stages of a visual task may present the child with difficulties, and here again, repetition can help.
Familiarity with places, objects and people is important for children who have to work hard to make sense of what they see and hear. A child who appears not to be using his vision in a given situation may well react differently when a known object is introduced. This can be a key factor in the development of children at a very early level of visual function. Once they have become familiar with an object through repeated, active exploration of it, they may begin to respond visually to this object, even though they may appear oblivious to other, less familiar, objects.
Some children with CVI see things that are moving in their peripheral vision more readily than if they are stationary. This should be ascertained from careful observation of the child in natural situations and should be given consideration when tasks are presented to a child. The second case study above illustrates this aspect and indicates how knowledge of the child’s visual functioning can enable us to structure activities that encourage exploration and, in so doing, develop the child’s ability to use vision more effectively.
Many children will rely on context to enable them to recognise objects and people. A cup, for example, may only be recognised in the context of a mealtime. Activities should always be carried out in the relevant surroundings, eg: a dressing programme should take place in the bedroom, in order to help the child make sense of the task. Introduce new elements to a task, one at a time. Try not to change everything at once. Experiential signifiers or objects of reference can be useful tools to help the child to recognise where they are or who is approaching them.
Positioning should be assessed with the help of a physiotherapist, to ensure that a balance is achieved between the child’s physical needs and his optimum viewing position. The child must be comfortably positioned before he is expected to use his vision, as it may be very tiring to have to, for example, maintain head control and concentrate on using the eyes at the same time. The child’s potential for movement should be assessed; can he reach out with his arms? How close does an object have to be positioned?
7. A multi-sensory approach
It is important to look at the environment from a multi-sensory perspective, and to provide opportunities for developing the use of all senses. The environment must be right to enable the child to function within it to his full potential.
Whilst in this section the focus has been on vision, we need also to consider all the other senses when we are looking at environmental factors. The child with a visual impairment may rely more on other senses. For example, hearing may be a more motivating and more meaningful way of understanding the environment and identifying people. It is important to look at the children’s skills and help them to use these to access their environment to the best of their ability. Some children will have difficulty using hearing and vision together and this must be taken into account. A child will be using different senses and skills for different tasks and all must be taken into consideration to enable the child to best make sense of his environment. The principles outlined for vision are relevant for the other senses as well. Structure, routine, motivation, repetition, simplicity and time are important to facilitate all the children’s learning experiences.
Lee, M and MacWilliam, L (2002) Learning Together: A creative approach to learning for children with multiple disabilities and visual impairment. London: RNIB