This page aims to help parents plan for changes and transitions by describing a way of planning that we've found helpful.
Transitions can minor, like planning a day out (knowing that sometimes even small changes can be difficult for your child to cope with).
Or they can be major, like a house move or change of school.
This approach can also be helpful when trying to identify the cause of existing problem areas or difficulties.
If the person with CVI you support, has little or no language, you may find our companion page Transition Steps (Non-Verbal People with CVI) helpful.
Our suggested approach has seven steps.
Sometimes it is difficult to know where to start when making a plan.
We have created a form to help you, click here for downloadable pdf.
We all live in Time and Space, so why not start here? Very simply...
When is the event (time) and where will it be (space).
Then what will they be doing (activity)?
Thinking about what you are planning to do, first, break it down into blocks of time. These can be small blocks, maybe a few minutes, or larger - hours, or even days.
Then, for each block of time...
Space (Location / Room)
By space we mean location - 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 - this might be part of the planning, so think about different options, or choices. Or leave it blank, the blank space is part of the plan, it shows you something you need to comeback to.
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 to plan for changes when returning to school after the Corona Virus pandemic.
Example from the form above:
Time: 0730-0800 hours
Location: Bus stop and bus
Notes: Fewer people allowed on bus, only one person per double seat, queuing at bus stop - need to check, check bus times not changed, are masks needed?
A little thing, like feeling confused on the bus because the seating arrangements have changed can be very stressful, and a bad start to the day.
We have used this approach a number of times, because often it is little things that are missed, that can cause the most problems. One parent realised her daughter struggled with her care placement because after being dropped off, to encourage independence, she was expected to hang her coat and bag on a hook she was unable to find.
Now you have your plan...your plan. But this is a plan for your child, so your child needs to be involved, invested and ultimately in control, as much as is possible. Time to TALK.
Plan first or talk first?
For some relationships, it may be better to talk about what's going to happen first as Step 1, and then plan together for this as Step 2.
Some children, particularly younger children whose learning has been affected, may find things easier if their parents have given the upcoming event some thought and planning first. You know your child, so do what is best. The key is that your child knows that how they feel and what they want matters.
Give time to go through the plan when you both can focus on it.
This may need a number of talks, to explain what's going to happen, to discuss options and to agree what will work best.
Together, go over your plan again, and if needed, start again and completely rewrite.
Once agreed, look again at that list of scores.
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, possibly a teacher, or friend, or family member. All with your child's agreement, giving enough time, go through your 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 and start again.
It may be that a new suggestion will have an effect on something else.
For example if your child struggles to stand in a crowded queue for class, you may ask if they can always go at the front, and the teacher suggests that they can go in first on their own instead. But, this means your child will be separated from their friends - by solving one problem you may be creating a new one.
These may seem like little unimportant things.
But we hear time and time again, that it is these little things that are often missed, even by your child, which can create difficulties.
What if there are no obvious solutions?
You have taken the time and worked out what needs changing or altering, but can't get the agreement needed?
An example may be that the fire alarm is tested weekly at a new school your child is due to start. You know from previous experiences that fire alarms are so stressful and frightening for your child that they scream and burst into tears. The alarm has to be tested, so your plan on this point has hit a bit of a brick wall - what can you do?
There are three main options for your child:
So, with the fire alarm. You may have asked that it be tested before school or at weekends, and that request has been refused. So you can't change it.
Maybe don't do it, which might mean your child missing school - is that an option?
How could your child learn it? Maybe set an alarm on a watch for your child to put some earplugs in, so they anticipate it, or stand outside for the duration of the test.
It may feel very unfair. Laws around accessibility may be on your side, but the world still has a lot of catching up to do. Some issues you may choose to address through the law if they can't be resolved, others you may choose to reluctantly accept.
With planning, hopefully you can make the best of what is available, and importantly prepare for what may be difficult.
The plan is not just about anticipating problems, remember to think about opportunities too.
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.
With the best planning, there are always going to be unexpected things that come up. When they do, review.
It may be that only a small simple adjustment is required.
It may be a major re-think is needed and you have to go back up to Step 1 (above).
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 your child to recognise the signs of becoming overwhelmed, which can lead to fear, stress, anxiety and even a CVI Meltdown. Our page 'Anxious' gives a brief explanation and suggestions. If your child is becoming stressed because it is all too much, then they need a way to get help, either by helping themselves if able, of seeking help from others. Agree in advance with your child what they should do in different circumstances.
Change can be difficult for everyone.
Adjustments take time.
We champion parents at CVI Scotland because you are the ones with the most patience, love, motivation, time and commitment.
Change requires everyone's patience.
Give it time.
Your generous donations will be put to immediate use in supporting our charity...
At CVI Scotland we are devoted to helping people understand cerebral visual impairments, and together working towards developing the understanding of this complex condition.