Children with CVI can have very specific support needs, which are not always easy to understand or establish, both at home and at school.
This guide is designed to help you go through your child's day, and see the challenges from their point of view, giving ideas to help at school. It's not possible to cover everything, but we hope that through our ideas, and our stories about how CVI affects the three children we describe, you'll be able to see how your child is affected too.
Many parents have shared with us information about their unpleasant experiences trying to get support for their child, but a common difficulty is how to put their children's needs into words.
We have heard variants of the following story below from lots of parents:
Here are the views of a parent and a teacher, who have both separately (not involving the same child) been involved in such a battle:
A parent writes:
It was the worst time of my life. The school was lovely, the staff were lovely, but my daughter just wasn't learning anything. At first, she seemed happy there, but over time she became more difficult when it was time to go to school, and when she came home often seemed really angry with me. She couldn't talk, but I sensed something was wrong. I asked the school, but all I was told was how happy she was and what a lovely little girl she was and how well she was doing. At a meeting, I brought up that I couldn't see where she was developing, and asked specifically what skills she was developing, and no one seemed to have an answer. It just seemed that keeping my daughter safe and happy was enough, apart from I didn't think she was happy, and reflecting now I think she was bored, and often confused, and sometimes even frightened. Every day that I sent her to school against her will it ate away at me, even though I was constantly reassured how happy and lovely she was. I tried to be more assertive and asked for certain changes to be made. These were agreed to, then blatantly ignored. As I pushed harder I felt as though increasingly everyone hated me - how dare I challenge them? I started formal proceedings and had I not won I would have withdrawn my daughter from the school. It was awful on every level!
A teacher writes:
When teaching a child with complex additional needs, the relationship formed with their parents/carers is key. Effective communication is a must. When this communication breaks down the life of the teacher becomes extremely stressful and it can cause huge upset. I have gone through this. I taught a non-verbal boy who was a joy to have in class. His mother was a different story... She always wanted to find something wrong with her child, health wise, and would spend ages on the phone detailing his problems to me when in fact he displayed none of them in class. No matter what you said, you weren't right. She made increasingly ridiculous demands of the class team and constantly accused us of doing things that were harmful like giving him foods he couldn't eat, which just wasn't true - we adored him and our job was to care for him. All we were trying to do was our best but it was never good enough.
As a teacher, you get a feeling of dread whenever there's a phone message for you or new email from a difficult parent. Reading through screeds of accusations when all you are doing is your best for a child is so down heartening and stays with you even when you leave school for the day.
Listed below are some very brief explanations of how two areas of CVI (optic ataxia and simultanagnosia) can create challenges for children in school. We have singled these areas out because they are not widely understood and may not have been considered previously. For more details on the full range of CVIs please refer to the main sections on the CVI Scotland website. The more you know, the better you can understand your child's needs, and the better you can represent them.
Optic ataxia can manifest as a dislike of busy places. As a parent you may not have seen this at school, but if with you, your child demonstrates a dislike of busy crowded places like shopping centres, queues or airports (see optic ataxia section for more examples), then at school they may find the following difficult for the same reasons:
The reason for these challenges could be explained as due tolooming, creating a need for a protective shield.
Optic ataxia is non-conscious, so the child will be unaware that they have it, only that they don't like certain environments they find challenging.
Optic ataxia can also make the child appear clumsy, as their guidance of reach is challenging. This may make them feel embarrassed. This may also show as challenges playing certain sports.
Simultanagnostic vision can manifest in three key ways affecting your child at school:
Simultanagnostic vision affects visual attention, and makes it difficult to understand the whole visual scene at once. Things may not make sense because only a part is visually available, for example if a lot of information is on a black board or large television screen. The child may become confused, lose things and find following or understanding instruction challenging, because it is based on an assumption of full visual attention. This can look like the child is distracted or not paying attention.
Simultanagnosia is non-conscious, so the child will not know why they do not understand something, and maybe think they are just not clever, which is not the case.
With simultanagnosia the following may be challenging:
Note: A following guide will suggest detailed strategies to support the child with CVI through learning to read and write, understand numbers and mathematics and further educational aids for all levels of learner.
There are three example case studies following this guide, please take the time to read them to illustrate the anticipated practical application.
If your child has more than one cerebral visual impairment, and other difficulties, rather than consider everything together, which can be very complicated, just go through the guide one challenge at a time in relation to your child's rights to learn, be independent and have meaningful social interactions. At the end, you can bring them all together
The guide is in general sections that give examples. Some little things may not seem relevant, but small things can have a big impact on your child's well-being, for example, if your child feels pressure because they can't do something fast enough. This may have an impact of their mood, attention and overall self-esteem. Sometimes little changes are all that is needed to make a very big difference.
Children should arrive at school happy, relaxed and ready to learn. If just getting to school is proving difficult for the child, then some support or changes need to be considered. If extra help is needed within the home then other agencies would need to be involved, for example social services. In these circumstances the school may support your application for help.
Before School - Home Environment
Is the house noisy, busy or cluttered? Are there many patterns? This can make finding things like school uniform, and making sense of things, difficult for a child with CVI
Before School - Personal attention:
Is the child able to do these things for themselves? If not, is there sufficient support for them to be achieved in a calm and timely manner for example if there are other children to attend to?
Before School - Getting to School
Before School - Playground Before School
Your child should not be stressed or exhausted before they have even started the school day.
At School - Classroom
At School - Corridors
At School - Assemblies
At School - Verbal Communications
Are all professionals using meaningful language that can be understood? (see Gordon Dutton's Blog 6 on Radio Language) including:
At School - Lunchtime
At School - Playtimes / Playground
At School - Sports
At School - Music & Art and School Clubs
At School - School Trips
At School - learning
Your child can only learn from what they can perceive.
Consider in relation to everything your child is presented with at school:
If your child is agitated, angry, stressed, overwhelmed or about to go into a CVI Meltdown as soon as they get home, then this is a strong indication that something at school is too challenging and needs attending to.
Your child should not be coming home wanting to explode!
The following sub-sections contain three case studies showing how the guide can be used.
These 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.
Not everything is going to require a strategy, but the more you know of your child's world, the more you can understand, and learn to anticipate their needs.
At the end we share some tips and advice around negotiations, however we strongly recommend seeking professional input at this stage and have listed a number of organisations who can help you.
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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.