Cerebral Palsy and Visual Impairment in Children: Experience of Collaborative Practice in Scotland
Meeting the Young People
Anne - a pupil in a mainstream secondary school
by Janis Sugden
Anne is a third year pupil who attends her local secondary school. She has diplegic cerebral palsy, which affects her mobility and balance. It is more evident in her lower limbs. She walks slowly and has difficulty climbing stairs and stepping from kerbs. Towards the end of the day Anne tires due to lack of stamina.
Anne is of normal intelligence and she is currently doing Standard Grade course work at general and credit level. However, her use of vision fluctuates. Visual acuity is probably normal but she has visual perceptual difficulties that are most likely neurological in origin. A consequence of this is that her use of vision fluctuates. In functional terms she has difficulty judging depth and distances. At times she has difficulty discriminating and ´seeing═ individual words and objects on a page.
Anne has a history of seizures which started during her upper primary years. Epilepsy was diagnosed. Hospitalisation and fluctuating ill health caused her to miss a considerable amount of schooling. This affected her self-confidence, emotional well being and stamina. Anne found it difficult to attend school at this time. During the transition between primary and secondary education a review of Anne’s special educational support needs was held. Anne’s primary teacher thought she would struggle educationally, socially and physically. Anne’s parents were keen for her to attend the local secondary. They were open to a restricted curriculum and any other adaptations that might be needed. The educational psychologist was of the opinion that Anne was academically able for mainstream secondary education. The principal teacher, support for learning, was established as the key worker for Anne at this stage. An Individualised Educational Programme (IEP) was initiated and Anne attended school on a part-time basis.
A learning support assistant who was working with Anne in class noticed that she was having problems reading work on the blackboard and from worksheets. This was noted at the initial review meeting at secondary. Anne’s parents contacted the consultant neurologist. The neurologist contacted the visual impairment service.
Multi-disciplinary review meetings are held regularly to review Anne’s progress. She now has a Record of Special Educational Needs.
Anne attends school three days full time and two days part time. Her parents believe that the time at home has been vital to her success at secondary. Anne and her parents remain very positive about the current provision. Anne is now enjoying school again. There are no difficulties getting her to attend. The school has set up a lunchtime club that Anne attends on the days she remains in school. The teacher of the visually impaired gives advice on the adaptation and provision of curricular materials. In-service was provided to staff working with Anne. Anne either goes for a ´walk═ or swimming lessons instead of PE lessons. She spends about an hour a day in a standing frame at home to improve her posture. This is on the advice of her physiotherapist. In classes Anne has a reader and scribe. However, she has recently been using a laptop computer with additional software that enlarges the font and has speech output. Anne finds this particularly useful as she knows immediately if she has made a mistake. Special arrangements are made for any assessments. The key person ensures that Anne is given any assessments in the same format as course materials, if necessary, first consulting with the subject teachers and other specialists.
Mairi - a pupil in a secondary special school
Mairi was referred to the Visiting Teaching and Support Services for visual impairment support in February 2001. She had moved with her family from England and was now attending a school for children with severe physical difficulties and associated learning difficulties. Mairi was 14 years old and came with her mother for a functional vision assessment1. The assessment was carried out in school, by the consultant community paediatrician who has responsibility for visual impairment and the visiting teacher of the visually impaired, with support from the school medical officer.
See Appendix 2 - An approach to functional vision assessment in special school.
We knew that Mairi has spastic quadriplegia, problems with tracking and ´communication difficulties═. She was referred because of problems interpreting complex picture material, particularly in a testing situation. However, Mairi has good visual acuity (6/4) and can read very small text so the problem was not caused by poor visual acuity.
During this assessment she demonstrated her ability to read fluently text size N8 using the Maclure Reading Type for Children chart. She did not show any visual field loss. She could track a Stycar ball in all directions, but had jerky eye movements and tended to move her head as well as her eyes. Mairi pointed out that small amounts of text did not present difficulty, but larger amounts of close print were harder to read. Mairi was very keen to understand and to help us work out what was causing these problems. She is a lively and articulate teenager and was clearly relieved at being taken seriously - having good acuities but problems with accessing text had not always been understood by teaching staff in previous settings, as a recognised effect of her cerebral palsy. We discussed the advantages of masking out parts of a page to reduce the effects of crowding and also the effect of double line spacing in making text more readable.
We moved on to The Manual for Teachers of Children with Learning Difficulties and looked at the crowded pictures. Mairi could pick out the features we asked her to find, but it was evident that she was having to scan the whole picture laboriously to find the detail she needed. We tried out the different coloured papers with printed text on them. Mairi was very clear that she could read black on white, but that black on pale green, yellow or other pastel shades was easier for her. Her own ability to tell us what she found helpful made the assessment particularly satisfactory.
We talked about using computers and adapted keyboards. Mairi has difficulties with hand function, especially when she is tired or stressed, so a normal keyboard presents problems. We agreed to contact the Technology Support Service and ask for a Big Keys keyboard for her to try. We discussed using a scribe and reader and Mairi pointed out that she likes to be able to see the text while it is being read to her. If it is good quality, enlarged and well spaced, it is easier for her to follow. The reader helps to take the pressure off, so that Mairi can process the information most effectively. She is also used to working with cassette tape and having her work recorded for her.
By the end of this meeting we had established a good starting point with Mairi and her mother for working together to share information and help her school staff to understand the implications of the combination of cerebral palsy and visual impairment.
Since that meeting a year and a half ago, Mairi has sat her Standard Grades and done well and has moved on to Highers. School staff are aware of her needs. The Exam Board are kept informed of her need for extra time, adapted papers and a scribe/reader. Text books are gradually becoming available on CD or in electronic format, which Mairi can access, with the support of her family, for homework and revision through a reading programme on her computer at home. The Big Keys keyboard is useful for small amounts of work, but typing is still time-consuming and tiring for Mairi. There are enormous challenges to be met, but a sharing of information and understanding between the student, the family and the various school and support staff involved has been essential.
Maclure Reading Type for Children. Harlow: Clement Clarke International Ltd.
Kinsley-Crisp, Ronald (1998) Do you have a child with a visual dysfunction in your classroom? (Manual and assessment kit for use by teachers in mainstream schools who have children with learning difficulties and/or behavioural problems, but who are not regarded as visually impaired). Ipswich: JAG Enterprises.
Sam - a primary school pupil
Sam is a lively, chatty boy and is now in primary 4 in his local school. He attended a nursery for children with special needs, where he gained very useful pre-school experience and then moved into mainstream at the start of his primary schooling. The Visiting Teaching and Support Service became aware of Sam only after this, when the ophthalmologist at the hospital referred him for a functional assessment to the consultant community paediatrician specialising in visual impairment. She and I met Sam with his mother to carry out this assessment in his school, during his first year.
Sam has athetoid cerebral palsy and it has been noted that his MRI scan shows a condition called periventricular leukomalacia which often has associated cerebral visual impairment. He had had an operation for a squint at four years of age and had also recently started further patching, as the squint had reappeared. His mother observed that Sam has always had some problems with his vision, failing to notice things until they are directly in front of him and sometimes bumping into things. His concentration span is not good. He likes pictures but his mother feels he does not always see real objects when they are static. Sam can walk for short distances, but uses a wheelchair for longer distances or on uneven ground. His sitting balance is not good.
Sam’s corrected distance visual acuity, measured with the Sonksen Silver Acuity System, was 6/24 binocular. Using the Maclure Reading Chart he was able to read size N14 print. His visual fields were tested using the Stycar Ball, and Sam showed a complete left hemianopia and a right field reduced to about 35 degrees. He could identify fine detail in crowded pictures and he located and identified all the objects presented during the testing. Sam’s visual tracking was slow and jerky.
The assessment meeting allowed us to discuss with Sam’s mother what we would do to support him and the staff in school. At first Sam preferred to use N18 sized print, which was fine for infant reading books and other texts. He has now moved happily to using size 10-12, with no loss of fluency.
The key to success with Sam was collaborative working with the occupational therapist and the physiotherapist. Once Sam was comfortably positioned in an appropriate chair or in his standing frame, he would tackle his work willingly (most of the time!). A Write-angle board has also helped to achieve better posture and ensure good light on his work. Sam can now work from the blackboard with the same ease as his peers and his handwriting has become very neat. He still finds it helpful to have busy pages of text masked, so that he has less information to process, and he does get frightened when objects or people appear soundlessly from his left. He is uncomfortable when there is glare from low sunlight, but the school has had blinds fitted in each classroom. He works with a support assistant who is well aware that it is her role to facilitate Sam’s independence, not create unnecessary dependence.
Staff have taken on board the nature of Sam’s needs and know that his vision does fluctuate. They position him carefully in the room or within a group so that he can use his field of vision to best advantage. He is learning to type, using his ´good═ hand, so that he has a skill to fall back on if writing becomes too onerous as he makes his way through his schooling. The technology support staff visit school to ensure that Sam has access to any equipment which might facilitate his learning. All this has been achieved through collaborative planning between the various agencies and is significantly easier because Sam has very supportive and involved parents, who are willing to share their own views.
Sonksen, P M and Silver, J Sonksen-Silver Acuity System. Windsor: Keeler.
My daughter, Celia who is now 16, has quadriplegic cerebral palsy. She is severely physically disabled but has good language skills although her speech can be distorted at times and needs to be tuned into. Celia very obviously has good cognitive abilities but this is accompanied by specific learning difficulties which are quite severe and which affect learning in different ways. She can see well but has a variety of perceptual problems affecting how her brain interprets what she sees. The muscles of her eyes have been affected as well so that her eye movements when reading are jerky and the pace of her reading is very slow. These eye movements also affect her vision in moving down from one line to the next, or, if her eyes lift off the page, finding the correct place again especially when a word is repeated on the page. This difficulty occurs frequently if Celia is reading aloud, as her head tilts back when she speaks, resulting in her eyes coming off the page all the time.
When Celia was a baby I was told that she may have perceptual difficulties when she got older and it was likely that these would affect her ability to learn. Taking that on board, I decided to do what I could to help develop Celia’s language skills to give her the best possible start with learning, and as a possible way round any learning difficulties which might appear, by encouraging listening skills. Celia was immersed in story reading, nursery rhymes and songs both from me and from tapes from a very early age. Her communication skills developed from an exceptionally early age as did her speech. However, after a short while, her speech development virtually stopped although it was obvious her ability to understand language continued to develop. Once Celia started using her speech again it developed rapidly and became advanced relative to her age very quickly.
When Celia started primary school at the age of 5 and a half, it soon became clear that reading was not going to develop easily. She had problems decoding and tried to use her memory to read which became more and more difficult the older she got. She exhibited symptoms very similar to someone with dyslexia. At home we religiously practised her reading but I continued reading books to her and she always listened to an age appropriate story tape when she went to bed. By about 8 however, it was fair to say that Celia was a reader and by the age of 9 there were clear signs that she was monitoring her own comprehension so metacognition had developed. Her reading age was tested by an educational psychologist at the age of 11 and by that time her reading and comprehension ages were 15+ with silent reading producing considerably better results than reading aloud because of the problem of her eyes lifting off the page.
As Celia got older, the rate of reading became the greatest problem and the one which was holding up her ability to show what she could understand. By this time we had moved to Edinburgh and after discussion with the consultant paediatrician, Celia was assessed by the VI service. As a result of this assessment Celia was diagnosed as having a moderate visual impairment due to the degree of perceptual difficulties. Recommendations were given to her teachers about using specific colour of paper and size of print for contrast but, much more importantly, a recommendation was made for Celia to have a reader as well as a scribe to help her cope with the volume of work. This was particularly helpful for exam level work. Celia did very well in the 3 Standard Grades she sat at her special school and is now going on to do Higher Modern Studies in one year with a B in the prelim and Intermediate 2 English and French this year. She has expressed a desire to attempt Advanced Higher Modern Studies next year as well as taking English and French to Higher Level. To help cope with this level of work, Celia has a program on her laptop which allows notes and books to be read aloud so that she can go over her work independently.
I am delighted that ways round Celia’s many difficulties have been found and am extremely grateful to her teachers and other staff, including the VI teacher, for all the hard work and willingness to embrace new ideas and suggestions. Who would have thought?