This page has been written for parents who have a non-verbal child with CVI returning to school after the Corona Virus. We have written an alternative page for children with the language skills discuss what is happening. Please click here to view.
The Corona Virus has presented non-verbal children with CVI with particular challenges.
Think about your child's world and what happened to it? One day they were in a routine, for most involving school, and activities, and a range of people. Then, much of it just disappeared. Your child is non-verbal so you have not been able to explain anything to them. Like most, we imagine you have been very busy trying to keep your child as calm, happy, comfortable and as occupied as you can.
We know that in this group of children are some who can walk, and others who use wheelchairs. Some are at specialist schools for children with visual impairments, others at more general special education schools, some in specialist units in a mainstream school, some in a mainstream school and class with personal support and some home-schooled. There is a range of abilities, communication skills, personal skills and behaviours. So this is a broad group of children.
We know that different schools in different areas and regions in different countries are all making plans for their children to return to school, some are already back at school, some schools did not close.
So, everyone needs to PLAN.
We use an approach we have developed called Transition Steps (Non-Verbal Children) which is our guide to help plan for changes for non-verbal children and adults with CVI, and follows a 7 Step Approach:
A plan needs time, so give yourself as much time as you can, as you may need to request changes are made. We are using the term 'lock-down' for the period of social distancing and isolation, but different countries used different terms.
Who can you ask about the school? Possibly a teacher, maybe your child has a VI teacher?
What have you been told about your child's new day? You need to go through every part of every day and see what may have been missed, or may need more thought or attention.
Our suggestion is to break each day down into blocks of time, e.g. 8.30am-9am, and think:
We have created a form to help you, click here for downloadable pdf.
Thinking about your child's new school days, first, break each day down into blocks of time. These can be small blocks, maybe a few minutes, or larger, depending of what your child is doing.
Then, for each block of time...
Location / Room
Where they will be - which might be:
Next, for each block of time, each with its location, note down what they'll be doing - maybe you don't know, and this is a part of the planning process - what you don't know you need to find out.
Here is where your knowledge of your child with CVI comes in. Think about their world, how will this be for them? Write down everything you can think of.
You need a way of working out which elements of your plan need to be changed or developed, and how to prioritise what is most important. A simple scoring system can help with this. Thinking of your child, for every block of time in your plan, consider:
Below is an example of a form we've started completing imagining a boy called Sam returning to school:
Example from the form above:
Location: Home and Transport
Activity: Transport to school
Notes: Will the same people be collecting Sam? Will it be the same vehicle? Has anything changed e.g. different route. Are they still collecting Adam after? Is the vehicle cleaned where Sam can reach?
To do: Phone school transport - find out what the arrangements are - if new transport maybe drive Sam back to school to begin with (??) discuss with teacher - don't want Sam to think will always be me, so might not be best option. Check cleaning arrangements of vehicle - as used by many.
Little things, like Sam loving to give hugs, but not being allowed to until he has had his hands washed, can be very upsetting.
We have used this approach a number of times, because often it is little things that are missed, that can cause the most problems.
Now you have your plan...your plan. But this is a plan for your child. You can't talk through the plan with your child to get their views. As well as you know your child, you can't really experience their world as they do. You can only try to.
So, how can you prepare your child for this change?
One way, is by helping your child to build maps in advance.
We have written a short and simple explanation of this approach in the section STEP 2. MAP our page Transition Steps Non-Verbal Children. Please take a few minutes to read it.
Specifically, in relation to returning to school after the corona pandemic, think of how you can reduce the confusion of many changes, after an extended period of absence.
As much as you can, as appropriate, in advance, try to find opportunities for your child to experience the new school world they will be returning to, to build up memories. Think in terms of:
The more that already exists in your child's memory, the less that is new, and the easier the change will be to deal with...BUT...
Non-verbal children with CVI can easily be confused. Their maps to make sense of the world can be compartmentalised, and so a person from school may not 'belong' at home, so a home-visit may not be appropriate. A visit to a school to experience a new layout may be confused with school re-starting, leading to confusion and distress when they have to leave, for another period at home until term starts. For some, a phased re-entry to school, gradually building up their experiences of their new school world may work well. For others, this new phased re-entry may create confusion, as fewer and shorter school days to begin with, might not make sense as they are extended.
As we explained right at the beginning of this page, this is a wide varied group of children. You know your child best. This is your plan for your child. Do what works best for them, and remember Flexibility (below).
Look again at the list of scores on your plan.
Anything that has been scored as a 3 needs immediate attention.
Next, build a team. With more people involved you will all get more support and encouragement. Think about who might be helpful, likely a teacher, but also or friend, or family member. Allow enough time to go through your child's plan with your team and see if it is achievable, or whether it needs further review.
If further review is needed, go back up to Step 1.
There may well be rules and regulations the teacher has no control over, that are part of safety measures. For example, staff wearing protective personal equipment (PPE, face masks, gloves and apron) when supporting your child during their lunch time. A parent may object to this because their child is likely to find it scary, but that is how the school district, on the advice of the medical experts, has decided it must be done.
This may feel completely unfair, and be like your plan hitting a bit like a brick-wall.
So think - what are your options...
With the face masks during lunchtime, maybe:
In these times, 'perfect' for your child may not be achievable. With planning, hopefully you can make the best of what is available, and importantly prepare for what may be difficult.
Children with visual impairments have been particularly hard hit due to Corona, and the usual accessibility considerations may be second to safety considerations.
With planning, hopefully you can make the best of what is available, and importantly prepare for what may be difficult.
Whilst there are going to be a number of limitations, think also of the opportunities.
The plan is not just about anticipating problems, remember to think about opportunities too. And a difficulty can be seen as an opportunity to do things better for your child.
If you are not sure where to start when thinking about possible opportunities, maybe 'thinking in threes' can help. Are there opportunities to help your child:
We explain these three areas in more detail in our page Three Key Rights for those with CVI.
Over the last few months:
We have thought of a CVI specific list of opportunities, but also difficulties, that may be relevant to your child:
Opportunities - Looming affects many with CVI, and the greater physical distance between your child and others may mean they feel calmer, especially when everyone is moving about, for example between classrooms.
Difficulties - Expecting non-verbal children with CVI to understand social distancing rules is going to be next to impossible. Even if achieved, judging distances can be very difficult for children with CVI, so they may accidentally get closer to other people than allowed or intended. Enforcing social distancing rules on non-verbal children with CVI is going to be difficult for those working with the child, and likely stressful and confusing for the child.
Opportunities - Fewer desks, fewer children, less movement, and for cleaning purposes, less clutter is all good news for your child's brain. It is likely the classroom environment is going to be easier for learning.
New School Layout
Opportunities: Most schools are restricting access, reducing numbers and many are introducing one-way systems in corridors. This will all be easier for your child to process to build new maps. Hopefully, when school staff realise this, it will help them understand the optimal environment for your child to learn.
Difficulties: Your child likely heavily relies upon mental maps of their school, which are going to need to be updated, and this can take time. Also, many schools are using markings on the floors. Many children with CVI have a lower visual field impairment and so will not be aware of these markings.
PPE (Personal Protective Equipment)
Difficulties: Many schools are using very clinical looking PPE. We know that many complex non-verbal children with CVI have a fear of hospitals and clinical environments. School staff dressing in clinical looking PPE can be confusing and frightening for some children.
Opportunities: In schools, surgical grade PPE should not be necessary, so ask if more fun items be used, like bright colours (but not patterned). We know there are likely to be distribution issues, so can the existing supplies be made a bit more fun, maybe with stickers or drawing on it? Most PPE is single use and disposable, so it may seem like a lot of work for something that is going to be thrown away after a single use. But this is about getting your child used to something new, so hopefully will be temporary. Either the need for PPE reduces or the child gets used to it. Alternatively, the person behind the PPE could sing a song, to make the experience less scary.
Face Masks (on others)
Opportunities - Faces are difficult to process and people difficult to recognise with CVI. If the same person wore the same coloured mask, maybe red or purple (but not patterned) this could make them easier to identify.
Difficulties Face masks may be upsetting for some children.
Face Masks (on your child)
Difficulties - Many with CVI have a sort of multi-sensory impairment, where input from other senses is difficult to calibrate. Some children may find getting used to the feeling of wearing a mask difficult, and may find concentrating in class more difficult as it creates a distraction and irritation.
Opportunities - Playing with water can be fun, so handwashing can be made a fun activity, maybe with a song to go with it. You can practice the hand washing with a song (if agreed) at home in advance, so your child gets used to the greater frequency.
Difficulties - With repeated hand washing, skin can become dry and irritated, so think about moisturisers to avoid this.
Exceptions to Rules
Many areas have agreed certain exception to the rules around how schools are managed following the Corona pandemic, because some children are unable to tolerate or understand the regulations, particularly where there are learning difficulties. Your local education provider should be able to give you information. CVI may not be specifically mentioned, but if your child is going to struggle, you should consider discussing where there may be leniency.
With the best planning, there are always going to be unexpected things that come up.
Children were forced, for their own safety, at short notice with little planning into a temporary period of isolation. That was the first 'new'. They are not going back to how things were, they are going forward to another 'new'. A new, new if you like. And with CVI we like change to be nice and slow and controlled - not like this! So, within your plan, there needs to be FLEXIBILITY.
Build flexibility into the plan. Don't wait for things to come up, that is usually a sign of a problem. Review your plan constantly to see where it is working well, and where it may need a little attention. It may need a minor tweak, or a major re-think. Your child can't do this, they can't even tell you. They need you.
There are likely to be more transition stages, hopefully as the corona pandemic passes. Be prepared for further changes, and constantly review the plan.
Children with CVI can easily become overwhelmed and stressed. As part of your plan you need a plan for when things go wrong or get out of control, like an EMERGENCY button or exit.
Teach everyone around your child to recognise the signs of their becoming overwhelmed, which can lead to fear, stress, anxiety and even a CVI Meltdown. If your child is becoming stressed because it is all too much, then they need a way to get help. Agree in advance with those looking after your child what they should do in different circumstances.
This is going to be difficult for everyone. Your child, you, the teachers, the other children. Adjustments take time, and there will likely be many more adjustments. We champion parents at CVI Scotland because you are the ones with the most patience, love, motivation, time and commitment. Our children need us now more than ever.
Gordon Dutton's Corona Blog 4 - What do we need to do next?
Nicola McDowell's Blog 25 - Heading Back Without A Plan
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