In the previous section Looming, we considered some of the frightening effects of CVI, particularly where optic ataxia is present. Parents describe their child's anxiety in busy places where they are surrounded by movement. Parents also describe various strategies that help calm their child, and there are many similarities, in that all seem to serve a protective purpose.
To explain further we are calling these strategies Protective Shields.
The purpose of sharing these experiences is to provide, if relevant or helpful, very practical suggestions to help adults and children of all developmental abilities with CVI, when they feel stressed when in challenging environments like busy crowded places. In many cases the strategies' usefulness extends beyond these environments, and can provide comfort and relief elsewhere too.
It is impaired function of the posterior parietal lobes of the brain that tends to result in impaired ability to use vision to guide movement (optic ataxia), and this is a non-conscious part of the brain. This means that even for the person who is articulate, it is not possible to explain what they are experiencing because that experience is non-conscious, so they can only explain how they feel, not why they are feeling that way.
Parents and people affected by CVI have described, when in busy crowded places, that they feel...
What has been repeatedly described is a need or urge for a type of shield to give a sense of self protection. In some cases the protection is from the very real threat of collision. From the previous Looming section, when Greg thinks he is going to collide with someone he "reacts instinctively to protect himself", in this case by bracing himself and covering (protecting) his head with his hands and arms. Here Greg is using his own body as a protective shield, as we all do, the reaction is instinctive.
We have identified three broad groupings of protective shields from parent's accounts, the first is Physical Protective Shields.
Connor's mother describes:
Connor has always loved sitting in boxes, the smaller the better. He definitely enjoys the feeling of pressure across his body, and I think that it makes him feel safe and protected. When in a box Connor is happy and calm, and the only thing that upsets him is when we have to take him out, which isn't as easy as it may seem! The other day he had his shower in the box! As school when stressed his teacher used to roll him up in a yoga mat which he loved, again creating a feeling of having something around him, whether it is a box or a yoga mat, to protect him. Connor's optic ataxia is considered severe, and he is definitely severely affected by looming. I think quite simply he feels safe in a box because he feels protected, it makes perfect sense to me. When he was a baby he loved a baby hammock, I think it's the same thing."
We learnt in the previous section on Looming that Connor felt protected in his wheelchair with the tray on, and from within a pop-up tent, that provided a small clearly defined space.
Katherine's mother writes:
My daughter Katherine uses certain strategies to help deal with situations. When out walking she loves to push her dolls pram and when shopping she insists on pushing the trolley. I think the reason being, it gives her advanced warning of anything coming her way, a change in height, as well as giving her something to hold onto, other than me. I think this possibly offers her overall protection. I still witness her stress, especially if someone accidentally nudges her trolley... The other thing is small spaces. Katherine loves to squeeze herself into a box, or suitcase, if we let her!
At times I have the urge / need to protect myself from a difficult environment by tucking myself in a corner or hiding in a small space. Of course, I don't always do this, as it would seem a bit strange, but it takes an effort to calm myself down when I don't.
My main shield is my husband. When I am walking with him I can completely relax and I never feel as affected by my CVI. But of course, he can't always be with me, so at times I have looked for other shields. One recent example was when I was overseas by myself attending a conference. I decided to try walking up the main shopping area to see if I could handle it. Well it turned out I couldn't and I ended up getting very stressed by the crowds. My instincts drove me to find a shop front that had a pillar jutting out from the wall, which created a corner for me to hide in. I stayed in this spot until I felt calm enough to head back out into the crowds (which was helped by a phone call to my husband for a little pep talk!).
I had CVI for years before I was aware of it. I did certain things that seemed strange with no explanation why and no one to help me to understand why I had these behaviours. This of course had a huge impact on my self confidence and meant that for many years I didn't really know who I was. It was very hard to understand why I wanted to hide in a corner, or why I felt like I needed a shield.
Heather's mother writes:
Heather doesn't know where her world starts and stops.
Heather as a baby was premature and cried more often than not until she was about 18 months old, consequently she was held or carried everywhere kangaroo style in a papoose. There have been times when our front door has been a 'shield' as stepping outside it has meant yet another hospital appointment or meeting with 'professionals' who didn't see my child as unique, rather just another number and in some cases talked a lot of nonsense
I have often felt my life was parallel to Heather's in that I have been stumbling along as if blindfolded not knowing which way to turn. However we have found that Heather liked to sit in boxes and be bathed in them too. The supermarket is just not her thing and on the occasions that we have stepped foot inside one she has her portable DVD player pressed firmly against her face 'shielding' her from the overload that being there presents her with.
She loves being outside in open spaces, especially if it is windy, with her long wild ringlets blowing in the wind.
Annie's mother writes:
Some of this this comes naturally. To give an example - Annie used to have a matt of shiny very tight curls and I learned very quickly that this was frequently a focus of many people's attention. Even complete strangers would stretch across her face to touch her curls. Annie understandably found the experience frightening and not being able to move away, put her hands up to her face, I guess I became her shield and would let anyone and everyone know that this frightened Annie and touching her hands was more enjoyable for her.
Annie loves getting into bed where it is cosy, familiar and she looks up to the ceiling anticipating her lights. Perhaps her bed and wheelchair are shields too?
The Actual Physical Spaces described, that give a sense of safety, and through this, relaxation, are:
These are just a few examples from parents, but a clear pattern seems to be emerging that something that can be felt to be physically protecting provides relief from the feelings of fear and anxiety listed at the beginning of this section.
When Mary wrote "It was very hard to understand why I wanted to hide in a corner, or why I felt like I needed a shield" she was explaining that she was not consciously aware of the reason why she felt this way. Because Mary didn't know why she felt the way she did, she was unable to develop strategies to avoid such situations - she didn't know what she was trying to avoid. Once Mary's CVI was recognised she was able to make many changes:
After living with CVI for 17 years before getting a diagnosis and not understanding what was wrong with me - I just thought I was weird and maybe a bit stupid, it was so amazing to find out there was an actual cause for my difficulties.
After finding out, the first thing I did was stop forcing myself to do the activities that I found so difficult - like going to the supermarket. It was very liberating.
These accounts suggested two further types of protective shields, one of which we have called Trick Protective Shields, and the other Reinforced Protective Shields.
Many parents have shared with us their child's positive reaction to deep pressure and massage. Connor, Katherine and Heather's love of squeezing into small boxes provides deep pressure, but the boxes are also providing a physical shield as explained above.
What if, where a physical shield is not available or practical, you re-create the same feeling using the gentle application of pressure, for example through massage?
You may be essentially tricking the body into thinking it is protected by something, because the feeling will be similar to being squeezed in a box or tightly carried in a baby sling.
This way the application of pressure is feeding the non-conscious urge to be protected.
Katherine's mother wrote "Katherine loves deep pressure massage and compressions. She loves things that feel tight, weighted and loves really firm hugs. A technique we use for calming when out and about is a gentle head squeeze, which she finds quite soothing".
Heather's mother writes: Both Music Therapy and Massage Therapy have enriched Heather's life considerably, however Massage Therapy specifically has led in many areas to Heather putting down her 'shield'.
Heather as a small child, recoiled from any form of touch, from being held to moving away from the dog brushing past her. Applying sun tan lotion was impossible and brushing her hair an absolutely no go area.
Fast forward 10 years... Heather now likes to cuddle, lets the dog rub against her legs and applying suntan lotion is no longer an issue. The day I never thought I'd see has come, in that Heather will now let class staff brush, play with and braid her hair.
I have set them the target of an 'up do' and a tiara by the time she leaves school!
Heather has worked with the same massage therapist, on a weekly basis, for the last 10 years. There was a hiccup when post a particularly nasty seizure, Heather reverted to not wanting her head to be touched, however as the sessions are totally Heather led, time passed and she indicated that she was happy for her head to be touched again.
In short Heather no longer feels the need to 'shield' herself from something as basic as human touch.
Post massage Heather is relaxed and sometimes sleepy which benefits both her and those around her! Class staff use gentle calming pressure on top of Heather's hands when she is over excited, flapping, screeching and beating her chest which works to stop her having a full CVI Meltdown.
In total contrast Rebound / trampoline on the other hand leaves her high as a kite!!!
Mary wrote in her account above 'I stayed in this spot until I felt calm enough to head back out into the crowds (which was helped by a phone call to my husband for a little pep talk!)".
Mary's husband's protective shield is so powerful to her, through being reinforced time and time again over many years, that he doesn't have to be present for it to be effective.
With this example, Mary was in a different country, but still benefitted from her husband's protective shield. This could be considered a type of Pavlovian protective shield.
Katherine's mother writes: In new places, I always try and get there early before everyone else arrives, so she can have a look around first.
One place she hates and always has done, is soft play areas and I don't blame her, I couldn't think of anything worse!
Here Katherine's mother is extending her role as a protective shield from providing physical protection, to planning and ensuring any environment is suitable for Katherine, and becomes 'known' so that Katherine will feel safe. This is sometimes called prior mapping, to learn the environment. Soft play would be frightening for Katherine with lots of children running and jumping around her and her mother extends her role as a protective shield by keeping her daughter out of harm's way, even if the harm is only perceived and not real.
Connor loves to travel on his father's shoulders. Whilst there is little physical protective shield, this mode of transport has been repeatedly reinforced as safe and through this reinforcement, Connor feels physically protected. The same reinforced safety applies to horses for Connor, and whilst horse-riding he feels completely protected.
Katherine's mother added: I was watching Katherine horse riding yesterday and it is so obvious, that she uses the horse as her shield. I don't know how I missed that one!
Even her instructor is picking up on how different she is on and off the horse.
One final Reactive Protective Shield emerged from our discussions, and this one seemed to be a bit of a paradox.
We have talked about the need to feel somewhere enclosed, tight, squeezed-in and the application of pressure, however, nearly every parent we have engaged with has commented on their child's love of wide open spaces. Wide open beaches top the list with open countryside, village greens and snow covered mountain ranges also being mentioned.
Lucy's mother writes:
The great outdoors is top our list - weather permitting. Big skies, wind in her face, physical exercise and the company of one or two companions.
Lucy's favourite place is the beach, second village greens - England does them wonderfully. We always go to our favourite village green with a football - about 2 acres of flat green edged by a few houses and no traffic.
Lucy loves country walks too, or round our local reservoir. Parks are good too.
Another wide open experience Lucy loves is skiing. Especially in a sit ski on a mountain steered by a super fast instructor.
Our garden is not huge but green and lots of plants, earth, seeds and stones to get her hands into. We have a big mat we put down next to planters and beds so she can connect with the plants.
All of the above can only be enhanced by the presence of a football.
Just remembered - she rather liked the experience of green bowls!
Lucy, Heather and Connor's mothers have all noted their love of having the wind in their face - maybe they associate this with being outside in an open space where they can relax because there's no historically reinforced fear.
For this reason we have included a love of wide open spaces in with reinforced protective shields.
Mary's example, telephoning her husband from a different country to benefit from feeling protected by him shows how these strategies can be effective even if removed - the telephone call could not physically protect Mary, but it fed her need to feel protected, and with that she was calmer and able to manage better.
Consider the person with CVI, what protective shields do they use and benefit from?
Connor's mother has complied her son's list:
Physical Protective Shields:
Boxes - Connor loves boxes, if he sees a box he will sit in it
Being wrapped tightly in things
His wheelchair when it has the tray on it
His pop-up tent if we are out and about - it's absolutely invaluable, he seems to sigh relief when he sees is
People he knows well, particularly me!
Trick Protective Shields
Connor loves the application of pressure, he put's our hands on his arms to squeeze them, and likes it when we gently squeeze the sides of his face. He will sit motionless if we rub his back and likes to biggest of bear-hugs.
Reinforced Protective Shells
His dad's shoulders and his horse both spring to mind. He loves being outside, particularly open countryside. Open countryside on his dad's shoulders is probably as good as it gets!
Reviewing the list made by Connor's mother, what she has created is a number of different strategies that can be used to help Connor feel safe and protected in multiple different environments. It is essentially a toolbox of multiple strategies specifically relevant and known to her son Connor.
Connor's mother wrote:
It wasn't until I wrote out the list that I realised I had created a toolbox, and a transferable toolbox at that, of multiple strategies with multiple applications in multiple environments that can be used by multiple different people.
If you create a similar list in relation to the person with CVI you will have strategies that are relevant and known to that person.
To explain in context, we have picked one of the experiences universally considered very challenging for people with CVI, going through a busy airport. With what has been shared by the people who have contributed to this section we could utilise the following strategies:
There are many other examples.
This shows how these protective shields can actually be viewed as the way a person with CVI shows us what they need to feel safe and protected. As stated at the beginning of this section, these behaviours, if the effect of optic ataxia which is created in a a non-conscious part of the brain, cannot be known for sure. The person can tell us how they feel, but if the cause is optic ataxia, they can't tell us why they are feeling that way, because they don't know (it is non-conscious).
What we do know is that many parents whose children are known to be affected by optic ataxia, have identified with what we describe here, and have said it would be useful to learn how to use this information in a structured way to help and support their child in the future.
This is what we have tried to achieve through this section - a structured way parents can use what they know about their child, and create organised known strategies to help in wide ranging situations.
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