Observe, Observe, Observe

We found out that our son was severely sight impaired, with a Cerebral Vision Impairment (CVI) when he was almost 10 years old. He has been in mainstream education from preschool upwards, with full time one to one adult support, to enable him to independently access the curriculum and enjoy school. You could say that we have been on a journey as a family, finding out about how our son functionally operates in this world, including how he sees the world. So how have we fared on this trip of discovery?

Meeting people on our journey with multi-sensory therapy skills has been a joy, a godsend and a saving grace. Dedicated, highly trained health professionals who achieved so much therapy through fun play was awe inspiring. Inclusive teachers who listened to what previously worked well, who sought advice, who showed empathy and aimed high for our son, realised the most potential.

Teaching staff who observed our son to pinpoint his personality and learning strengths (in order to build on them) were fantastic confidence boosters. Advocates in school who were on standby to consistently model correct behaviours have promoted his ability to be self-reliant as he grows up. Caring teaching assistants who are prepared to look beyond the smoke screen of any poor behaviour to uncover recurrent root causes of frustration or distress experienced by a child are definitely in the right profession.

It doesn't matter if your child is not visually ready for school. If your child is not an efficient, effective or effortless vision processor, they are entitled to increased support via Special Educational Need (SEN) provision in school.

Understanding adults, who were prepared to see a vulnerable child in need of essential boundaries and guidance in order to provide vital reassurance and the all important "can do" attitude for our son is what mattered above all else.

Committed and mindful teaching staff who planned in advance to embrace learning difference have been the "top attractions" en route during our journey. We have always agreed that teachers are expected, quite rightly, to identify and respond to a range of diverse learning needs in mainstream settings. Furthermore, those teachers who adopt flexible approaches akin to saying "if children don't learn the way we teach, we will teach them the way they learn" have been paramount.

What that actually boils down to, in our opinion, is the integration into classroom learning of such generally accepted best practice teaching techniques, such as mind maps, storyboards and story mountains. It has always been a source of great reassurance, when placing our child into a mainstream setting that what we were asking for wasn't a) unrealistic or particularly ground breaking b) and more to the point, of great benefit to other children in a classroom of 30 children, where all children cannot be expected to learn in the same way.

Leaders in schools who operate a "zero tolerance" against failure, expecting all children of all abilities to progress, and who sensitively balance the need of children to acquire literacy and numeracy against their right of access to a broad and balanced curriculum, are heroes.

This group of amazing individuals are responsible for our child's progress and happiness. Moreover they have "skilled us up" as parents.

Watching our son interact so very positively with other people showed us the way forward. We wanted that same level of interaction in our home so we started to learn how to become multi-sensory aware individuals too. Now that we have an official CVI diagnosis we are "fine tuning" our skills. We want to enable him to "see how his friends see". By definition, a multi sensory mum and dad just spend a bit of time beforehand thinking about how best to approach their child when they want them to achieve something.

Most of all a parent of a child with multi-sensory needs watches their child, a lot. "Observe, observe and observe" a mum with a child with CVI in America told me! Unless you try to understand how your child sees the world or operates in this world, your energy to unlock your child's potential is being wasted. We haven't always got it right first time, but we are committed, at least, to trying. Having a child with transient vision, that fluctuates minute by minute, isn't easy to comprehend - believe me. However, observation has been the key to our understanding. Sometimes though, things work visually that shouldn't and expected things have not worked. Nobody said this was going to easy but having time to reflect on these things does in the end provide greater insight.

If you don't understand your child's abilities you will never be able to maximise them. Understanding CVI means knowing your child's blind spots and empowering them to use their good vision. Knowing what is blurry, jumpy or invisible and offering strategies to increase vision functionality. Eliminating where possible any vision impediments such as speed. To some extent everyone's vision is restricted by speed. No one can see a bullet. If possible we slow moving objects down for our son to boost vision independence. Reducing the speed at which we throw a cricket ball before he smashes it for example. We inspire him to be visually curious by starting with the familiar first and then building in the new. We book seats in the right place in a cinema to alleviate crowding or make sure we get there first.

See your home as an environment for your child to start achieving things in controlled conditions first. When little, have play dates at home (as they will be comfortable knowing the layout and where things are to start off with). Then transfer these learnt social skills into adult led small group activities in schools and maybe provide some structured activities during playtimes at school. Teaching children to listen to "tone of voice" and explaining about the importance of body language are areas a speech and language therapist can facilitate.

The more supported experiences we provide, the more able our son is able to build up his own incidental learning knowledge, the more he enjoys and integrates into life.

The importance of your child receiving auditory information (hearing information) is likely to have increased following CVI diagnosis if those pathways are intact. We have always read to our child for instance, now he reads to us. We think of ourselves as "radio parents" and come with "audio description"! However, appreciating that your child's seeing and hearing pathways may be in competition with each other is powerful knowledge. Empowering our child to say to adults (who require him to look at them), "I can't, I have to listen first and then see" (or vice versa) is a positive step to teaching him how to manage his own situation.

Sometimes though, when things are complex, treating symptoms is important to maintaining self-esteem and a happy family. Understanding what causes your child's (visual) anxiety, and appreciating that anxiety is just an adrenalin release, a physiological body response, is so empowering. When you see your job to dissipate adrenalin out of the body in order to restore your child to full function you are in a much better place as a parent to start moving forward with the right strategies.

We try our best to create an uncluttered household that is a visually calming space and have either removed some obstacles or use equipment to aid access in order to maximise independence in our home. We are lucky enough to have an iPad and laptop which help us achieve so much. In affect we have established a "resource base" from home by developing skills, gaining experience and using the right inclusive equipment. We feel these resources are an essential step if we are to help him develop independent living skills, be relaxed and have fun at home, and expect him to independently access his homework.

Our house is filled with transparent storage boxes. Yellow, red and orange objects, providing maximum colour contrast, are everywhere. Wikki Stix, Bumpons, and a black on yellow label maker are now essential household items!

Providing him with the all important "can do" attitude has been key. He loves to cycle, swim and ski. Having the diagnosis is providing us with even greater insight as to how to maximise his vision. Giving him the TV remote control to press "live pause" on SKY (whilst encouraging him to get closer to the telly to aid vision) has been a revelation. Similarly, pausing and rewinding DVD films increases his functional vision independence too. Magnification apps on the iPad and e-books are all vision maximising tools that we are encouraging. We are very excited by voice recognition software on iPhones for when he is a little older.

Having the formal diagnosis now extends us further opportunities to make our son's future even brighter. We will continue to aim high to maximise his vision independence. At the end of the day, and by far the single most important piece of information we have ever received - and which must never get lost - is that all children progress the most when they are happy.

CVI Society

The CVI Society is entirely run by people giving up their spare time to share information and support others.

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