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School Support

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.

Why we have made this Guide:

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:

  • Child says they are unhappy or shows signs of being unhappy, and / or is not obviously learning or developing. These signs might include a reluctance to go to school, distress when coming home from school and not progressing developmentally, so...
  • the parents contact the school and explain worries (but are not able to be specific), but...
  • the school is not sure what the problem is, as the parent has not been specific, and school might not think there is a problem, so the school doesn't know what to do, so...
  • the parents become more worried as their child's well-being continues to get worse, then...
  • the parents blame school for not doing anything, or not taking them seriously, or not knowing what to do, or doing the wrong things, and relations with the school deteriorate, and...
  • the parent takes formal action, then...
  • relations between the parents and the school get even worse, sometimes they breakdown altogether. Still no one knows the actual reasons why the child was unhappy. Sometimes a legal battle follows, sometimes involving the child being withdrawn from school, however...
  • The actual reason why the child was not happy or not learning still has not been identified, and has got lost in a bitter fight.

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

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:

  • Crowded transport
  • Busy playground
  • Queues (dining room, sports, school trips)
  • Busy corridors
  • Team sports including football, hockey, rugby, netball, la cross etc

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.

Simultanagnosia

Simultanagnostic vision can manifest in three key ways affecting your child at school:

  • Losing things
  • Not understanding things
  • Not having attention

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:

  • Cluttered places, including rooms and corridors
  • Cluttered work, like crowded worksheets
  • Reading(see note below)
  • Finding empty seats in classrooms / lecture rooms
  • Finding people
  • Finding lunch boxes / personal belongings

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.

The Guide:

  • Walk through their day
  • looking through their eyes
  • and seeing their world.

There are three example case studies following this guide, please take the time to read them to illustrate the anticipated practical application.

  • Case Study 1 - A child with profound disabilities in a wheelchair at a special school.
  • Case Study 2 - A child with some additional support needs in a mainstream school.
  • Case Study 3 - A high functioning child in a mainstream school

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.

Before School

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:

  • Getting out of bed
  • Washing
  • Brushing teeth
  • Toilet
  • Dressing
  • Preparing / Eating Breakfast
  • Preparing belongings for school

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

  • Walking
  • Public transport - is it busy or crowded, if cancelled is an alternative easy to find
  • Driving - is there a safe place to stop?
  • Authority provided transport - how long is the journey, are there many stops, is the radio on, are there other noises and distractions?

Before School - Playground Before School

  • Is it busy?
  • How is the beginning of school announced?
  • Does the child have to find a line?
  • Where do they put their coat / bag / lunch / pe kit? - is it easy to find?

Your child should not be stressed or exhausted before they have even started the school day.

At School

At School - Classroom

  • Are the walls clear or cluttered? It can be very challenging for the child with CVI to concentrate in a cluttered environment.
  • How are the children seated?
  • Does the seating change, for example from chairs at desks to the floor?
  • If the child has better attention on one side, is the teacher on that side most of the time?
  • Do the children stick to the same seats?
  • If multiple classrooms (e.g. in High School) does the child know where they should be, where to go and how to get there?
  • Finding an empty chair or space in a classroom can be challenging, particularly with people moving about. It can also put a lot of pressure on the child.
  • Is the classroom a noisy environment?
  • If in groups - can the child make sense of it? Are they ready for group work.

At School - Corridors

  • Are the walls busy or clear, clutter can create confusion and distractions.
  • Does the child know their way around the school and where they are?
  • How are class times / changes signified - if a bell / alert or siren, is this enough for the child to know where they are supposed to be?
  • How does your child cope in noisy, cluttered environments?

At School - Assemblies

  • How does the child move from classroom to assembly hall?
  • Is it busy / crowded? Being in very close proximity to many other people, especially whilst moving, can feel very uncomfortable, even threatening (see looming & Nicola McDowell's blog 8).
  • Are the assembly hall walls clear or cluttered? If sat in a cluttered environment, or in the middle of a large group of children (more clutter) it may prove very challenging for the child to focus and listen.

At School - Verbal Communications

Are all professionals using meaningful language that can be understood? (see Gordon Dutton's Blog 6 on Radio Language) including:

  • Teachers (all, if the child has multiple teachers)
  • Support classroom staff
  • Playground supervisors
  • Dining staff (how do they describe the food to make a choice? How much time is allowed?)
  • Drivers and driver escorts
  • Office and admin / reception staff
  • Nurses / therapists
  • Do all these professionals understand the child's needs and challenges, and allow the needed time to explain and help and support?

At School - Lunchtime

  • How is lunch signified? Is it easy to tell if it is lunch or a class change?
  • Where is lunch served? Is it easy to find? Are the corridors busy, noisy, cluttered, full of people moving in different directions, sometimes knocking into one another?
  • Does the child have to queue?
  • Does the child have to find their packed lunch from a cluttered rack with many multi coloured lunch boxes and bags?
  • If school meals, how is the choice explained, how much time are they given?
  • Are the child's nutritional needs understood and met, for example ensuring they have enough fluids, and if affected by low blood sugar that a suitable diet is provided.
  • How do they find a seat?
  • How much time do they have to eat?
  • Where do they put their tray / packed lunch after the meal?
  • How do the leave the dining room, is it busy, noisy?
  • How is the end of lunch signified? Do they know where to go?

At School - Playtimes / Playground

  • Does the child have the opportunity to play with other children? If not, why?
  • Is the ground level and safe?
  • Is there support (for example a teacher or supervisor) if needed?
  • Is equipment accessible and safe?
  • If bad weather, where does the child go if not outside? How is this communicated?
  • How is the end of playtime signified? Does the child know where to go and how to get there?
  • Does the child have difficulty finding and recognising friends? (see Nicola McDowell's blog 7)

At School - Sports

  • Where are the child's sports clothes kept? Are they easy to find?
  • If support is needed for changing, is this provided in a dignified and timely way?
  • Does the child have sufficient time to change?
  • Does the child know what sports they will be doing? How is this communicated? Do they have a choice?
  • If playing away from school, how do they get there? How do they find their way around a new environment?

At School - Music & Art and School Clubs

  • Can your child take part?

At School - School Trips

  • Does the child know exactly what they will be doing and where they are going and why?
  • What purpose is the trip serving? If very challenging do they need to go?
  • Will the destination be busy or confusing?
  • Does the child understand how long they will be there?
  • If staying away overnight, is there a provision for support if the child is worried or scared? What is that provision? Is it good enough for the child's potential needs away from home?

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:

  • Is it big enough? Is there sufficient contrast? See our Simulated Images sections for examples of the impact reduced clarity of vision or contrast sensitivity has on what the child can see.
  • Is it too big? With challenges around visual attention, if something is too big then only a part may be seen, and the whole may not make any sense.
  • Is there too much clutter, noise and distraction?
  • How are things explained? Does the child have enough visual information to match the explanation with what they are seeing to make sense of it?
  • Is the child being taught using materials that they cannot see?
  • Is your child possibly being criticised for not doing things that they can't do because they can't see them?
  • Is 'hand under hand' used correctly, as opposed to thrusting a child's hand into the unknown which can be frightening?

End of / After School

  • How is this signified?
  • Is there a noisy busy rush?
  • If parents are collecting the child, how do they know how to find them?
  • If transport is provided, is it suitable (see transport to school above).

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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About Us

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