This page aims to help parents plan for transitions by describing a way of planning that we've found helpful.
Transitions can be 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.
If the person with CVI you support, has some language, you may also find our page Transition Steps helpful
Our recommended 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 think about...
Space (Location / Room)
By space we mean location - where your child 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. In the example, Milly has CVI and is non-verbal and has a significant learning delay. Milly is about to start a new school and her parents are trying to plan so that it will be a smooth, happy and stress free transition.
Extract from example form, above:
Location: Transport to school
Notes: Will there be stops to collect other children, or traffic. Will it be the same driver every day? Will there be someone to help? Will that be the same person every day?
To do: Phone transport department - let them know Milly will get upset of there is a radio playing, ask if ok to play her nursery rhymes, ask if can find a route that avoids traffic. Need to sort before day 1.
The score of 3 means it needs to be dealt with urgently. Something like if there is a radio playing might seem unimportant, but to Milly, could mean the difference between a happy journey to school and good start to her day, or a frightening journey to school, and terrible start to her day.
We have used this approach a number of times, because often it is the little things that are missed, which can cause the most problems. One parent realised her daughter, who was non-verbal, struggled with her care placement because after being dropped off, to give her independence, she'd been expected to hang her coat and bag on a hook she couldn't find.
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.
Think about how your child learns. It's a bit like the children's game of Snap! If something they experience is known, there will be a 'match' in their mind - Snap!
This is how we all learn. We experience something. That experience forms a memory, so when we experience it again, the new experience is matched with the memory and Snap! It is recognised. This is how we have learnt to do everything we can do from being a helpless new born baby - like a very elaborate game of Snap!
We explained this process briefly on our page Access, and in more detail in our Lessons, Level 2, How The Brain Learns.
Your child has two very big barriers to learning through our game of Snap!
And this is why, commonly...
The greater the language disability, the more severe the learning disability
The above quote was taken from our section Shopping for Suggestions, Non-Verbal Children.
So, that's the challenge - but what is the solution?
Use your child's memory.
As much as you can, as appropriate, in advance, try 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.
Be careful not to do anything that may confuse your child. In our example of Milly going to a new school, one of the questions was 'Who will meet Milly?'. Let us imagine there is a Class Assistant called Tom. If Tom visited Milly at home first, she may find it confusing to then see him at this new place (called school). So it may be better to introduce Tom on a visit to the school on a quiet day before term starts.
Just because your child is non-verbal, language can still be learnt, even if never spoken, to help label experiences in the mind. Tom (Milly's Class Assistant) could use his name. But Tom is a very short name - so maybe ask - can we call you Tommy? This is longer, but it may be an an easier sound to remember - and so when Milly sees Tommy again, even though she may not be able to identify him by what he looks like, consistently using the single word Tommy will help Milly learn to match the name with the correct person...Snap! Learnt!
Please see our pages Language (for non-verbal children with CVI) and Shopping for CVI Suggestions (non-verbal children).
You may need to review your original plan (Step 1) as you do this.
Next, build a team. With more people involved you will all get more support and encouragement. Think about who might be most helpful, possibly a teacher, or friend, or family member.
Go through your plan with your team and see if it is achievable, or whether it needs further review. Others with different past experiences may have good suggestions, or they may see difficulties you had not anticipated.
If further review is needed, go back to Step 1.
It may be that a new suggestion will have an effect on something else.
For example if your child struggles with the noise in a school dining hall, the school may suggest allowing your child to have their lunch in a classroom on their own. But whilst you understand your child's difficulties, you also don't want them to be isolated from other children, because you know how much your child loves the company of other children...so...what do you do?
What if there are no obvious optimal solutions, or you can't get the agreement you need?
Your plan has hit a bit of a brick wall!
There are three main options for your child:
So, with the noisy school dining room, what are your child's options:
This is one way you can update your plan. Consider your options, and re-plan, and as you learn more, or things change further, re-plan again.
Sometimes it may feel very unfair. Isolating your child, as with the dining hall example, may feel as though your child is being treated as 'the problem'. Another suggestion may be to stagger the lunch-time period so there are fewer children in the dining room at any one time, making the environment easier for your child (and others) to manage.
This might have an impact on the time-table though, which is set by the local authority, who refuse to change it, even if the school agrees with you.
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 all of these areas, anything that reduces clutter, noise and movement is likely to help your child.
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 needed.
It may be a major re-think is required and you have to go back up to Step 1 (above).
Many complex children with CVI who are non-verbal can become very resistant to new places, new experiences and new people. This may be because in the past they have been frightened or stressed.
The purpose of these transition steps is to help manage changes well, and by well we mean happily. It is as important for your child to be able to communicate 'no' or 'stop' as it is for them to enjoy and manage the transition. It is all about a sense of having control. A child who is in control is much more likely to enjoy trying new things - to explore.
It is extremely important that everyone understands the difference between your child when they are happy, calm and engaged and when they are stressed, worried or even frightened.
Between two extremes of a child laughing and screaming or crying, is a range. You need to let people know what to look for in your child.
And once again, you may need to re-visit your original Plan (Step 1) and think again.
It might feel like a lot of work, here's very simply why..
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.
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.
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