What is CVI?


Profoundly Disabled Child Case Study

This is a case study to show you how to use the information we have explained in the previous section Understanding Support Needs in Schools, please read this section first.

This and the other case studies show how sometimes small things, both in school and out of school can make a difference. The children in these three case studies are fictional, but the substance of their stories and challenges come from real examples shared by parents.

We have tried to keep these relatively brief, to show the process without going into too much detail that might not be relevant to your child.

Case Study 1 - A child with profound disabilities in a wheelchair at a special school (CVI Classification 1)


Isabelle is a profoundly disabled girl aged 12 in a special school. Isabelle has poor visual acuity and is registered blind. Isabelle also has a lower visual field impairment, simultanagnosia and optic ataxia to a severe level (Balint Syndrome), but these are not understood by the people working with her. Isabelle is in a wheelchair and is unable to communicate other than wailing or crying when she is distressed. Isabelle relies on other people for all her personal care needs.

Isabelle's mother writes:

Isabelle has the biggest personally, how can people not see that? I just believe she has more to offer, but no one seems to know how to connect with her. Last week I went into school to drop off some medications and saw her just sitting on her own in her chair, someone saw me and said she's only been there for a few seconds whilst another child was attended to. I had to believe them, but I've been feeling really uneasy ever since. Maybe it was the push I needed to do something as I've never been convinced she was happy ay school.

People treat her like she's blind, and I know technically she's registered blind, but that doesn't mean that the vision she has is useless. The problem is that people think they need to make everything giant, whereas at home I have seen her enjoying tracking much smaller things. She especially likes my little finger puppets, when I make them dance to nursery rhymes. The class in school is busy and hectic - I sound awful saying this because the children are complex, but all the noise of constant screams and yelps and cries, with teachers and staff having to talk over everyone is hard even for me to tolerate. The walls are covered in dozens and dozens of different projects. I feel like I am not allowed to ask questions or challenge what they are doing, but Isabelle can't do it for herself, and I just know that she has more to offer, and suspect she is bored a lot of the time.

A few weeks ago she went on a school trip to a busy museum to learn about science - I just don't get it - what do they think she is going to come away with? She was so stressed when she got home, and I don't think she knew where she was and was actually frightened. They do loads of stuff like this, before, it was a trip to the circus - why?

Isabelle: The Guide

Isabelle: Before School - Personal Attention:

Isabelle needs to be dressed and have her pad changed, I prepare medications in advance but they need to be administered, her teeth brushed (which she hates), hair brushed (which she also hates) and fed breakfast. I try to be as prepared as I can but it's always chaotic, although not as bad as when her brothers Michael and Paul were younger, I was so stressed and it was a major operation getting everyone out. Now they help, and sit and cuddle their sister whilst I run around. Looking back, I should have got some morning help a couple of years ago, but we are ok now.

Isabelle: Before School - Getting to School

Isabelle is the second of four children to be collected by school transport. Once on the bus it can take up to (and sometimes over) an hour to get to school. Isabelle actually quite likes being driven, but only when moving, and becomes really agitated when stationary. Once the bus escort phoned me because Isabelle had vomited - the noise in the background was awful, traffic, the other children, and they had the radio on. Isabelle's teacher has often mentioned that she is agitated when she arrives in school, and on a few occasions tearful. I used to think it was the chaos of home, but she is always happy and calm in the mornings now, and I think the transport probably is very stressful for her.

Need: Transport with a shorter journey time (less stops) and less noise.

Isabelle: At School

There are eight children in Isabelle's class, six in wheelchairs and two who are independently mobile. In practice, due to sickness and hospital appointments there are usually six children in the class. When all eight are there it is pretty crowded, all the wheelchairs take up a lot of space, with further specialist seating and standing frames and other equipment. The staff to pupil ration is slightly less than 1:1 but the mobile children are a handful and because Isabelle can't move, and doesn't make a fuss, she is the easiest one to leave. She finds noise and lots of movement and clutter around her very stressful, I know this from attempting to take her to the supermarket. She used to scream, but now it seems to knock her out. Regularly school will report that she falls asleep around 11am, even though she has had a good night's sleep. 11am is just after morning break when everyone is in the class - I think she is just overwhelmed and conks out! It's better than having a CVI Meltdown, but shows that the environment is too much for her. I'm not suggesting she needs isolation, but she does need a break from the chaos. I would want these breaks to be specified and regular, so Isabelle can learn to anticipate them, and understand when calm is coming.

Need: two half hour sessions a day where Isabelle is taken to a quiet restful place to relax and re-charge her batteries. This place should be noise and clutter free, with supervision.

Isabelle: Lessons:

People make things too big for Isabelle, they think that because she has a visual impairment that everything has to be massive. I know she responds better to smaller things, particularly with slow rhythmic movements. To learn Isabelle needs to understand what she sees. Picture signifiers are used for classes and lunch time, and they are too big, thus a blob of red (actually a large picture of a red apple) is used to signify lunch. I need to see that the staff can demonstrate an understanding of how Isabelle learns, and that this knowledge is shared with everyone working with Isabelle. I don't want to start a fight, and am happy to show them what I know, but previous questions and suggestions have not been well received. I see no direction in Isabelle's learning at school, truthfully, it feels like a safe place where they try to keep the children happy but have minimal expectations, almost like a babysitting service.

Need - mother to have session with staff explaining how Isabelle learns, staff to review teaching material and report back to mother with suggestions, and regular reviews / communications starting with a short weekly feedback session.

Isabelle: After School:

Once Isabelle is dropped off she is always stressed and takes about half an hour to wind down, I put her in a quiet place (she has a little tent in her room with a giant beanbag on the floor and lies in there with nursery rhymes playing) and wait for her wailing to subside, her sign that she is relaxed again. I think the day and transport overwhelm her.

Isabelle: Tangible Quantifiable Demonstrable Needs carried forward:

  • Transport with a shorter journey time (less stops) and less noise
  • Two (minimum) half hour sessions a day where Isabelle is taken to a quiet restful place to relax and re-charge her batteries. This place should be noise and clutter free, with supervision
  • Need - mother to have session with staff explaining how Isabelle learns, staff to review teaching material and report back to mother with suggestions, and regular reviews / communications starting with a short weekly feedback session.

Isabelle's mother doesn't know that the above will work or help, no one can know for sure. Isabelle can't communicate her needs, and even if she could, may not be aware of what they are. Isabelle's mother can however now demonstrate that she has considered the real challenges as demonstrated by Isabelle's behaviour, and suggested practical solutions.

Isabelle's mother has moved from I've never been convinced she was happy ay school to a constructive list of suggestions to help Isabelle.

The school may have other, possibly better suggestions or reasons to refuse a request. It isn't unreasonable to request trials over a period of weeks or months, but always with the understanding that if successful, the new arrangements are continued.


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At CVI Scotland we are devoted to helping people understand cerebral visual impairments, and together working towards developing the understanding of this complex condition.