CVI Mascot - VIC

Blogs & News

Issue 7 - 8 January 2018

Hi,

Happy New Year

Allowing for the number of hours an average child will spend in school across the year, we calculated that around 85% of their time was spent outside school. Some of this will be sleeping, some on holiday, some at clubs and activities, but most of it will be active and engaged at home.

Children with CVI need a lot of support, and not just at school. The across the board input the child with CVI needs at home to gain independence is fundamentally important to all aspects of their development, including and beyond their formal education.

We have created a major new section simply called HOME to provide suggestions and support to enable those who help across the majority 85% of the child's life. The people this information is particularly written for are those closest to the child; the parents, family, extended family, neighbours friends and carers. These are the people with the most love, time, dedication, patience and motivation, the people at home.

We have written the first of many sections, on CVI's public enemy number one - clutter!!! Please find time to read this section, just small changes in the home can prove life changing for the child with CVI.

In his Blog 17 (also featured in the previous Newsletter) Gordon Dutton explains how a parent followed his advice and decluttered their house and their son Jeremy, who has CVI, for the first time in his life started using his vision to search for things. Jeremy's discovery of visual search, even over just a few months, is proving life changing for him. All of his life Jeremy's vision has controlled and often frightened him, now he is learning to both control and use his vision. This was just due to simple inexpensive changes. We try to avoid recommending anything that comes with any sort of expensive costs, for the most part a combination of knowledge with love, time, dedication, patience and motivation are all that is needed to make fundamental changes that will permanently benefit the child in many ways.

Nicola McDowell in her blogs 14 and 15 has been spending too much time at home. As a teenager with unknown CVI she is increasingly retreating to the safety of her bedroom. Her parents, also unaware she has CVI, try to take her on a holiday to help. As the departure day approaches, Nicola's initial excitement turns to dread. Nicola was like Jeremy (above), her vision was still controlling and frightening her. Nicola's popular blogs give a voice to so many who are unable to articulate their experiences.

We have ongoing communications with many parents on many subjects. In a recent conversation, the issue of light gazing came up, which is a common and well reported feature of CVI, although there is no consensus on why this occurs. Several parents describe two elements which we thought were interesting:

  • 1) Light gazing is not voluntary; their child is drawn to the bright light source and is unable to pull themselves away
  • 2) Light gazing is not a pleasant experience for their child, it may be uncomfortable or painful (and in extreme cases even damaging)

We report these finding and share some thoughts and suggestions. We feel that amongst the parents, there is a goldmine of widely unknown information about CVI.

New For 2018

Home

We have already started putting the next section together under Home, and it is all about emotions. We hear repeatedly how children with CVI have atypical or unusual emotional responses. We look at emotional development, and how this is affected where vision may be reduced, or unreliable, inconsistent and untrustworthy, as is the case for many with CVI. With understanding, it is often simple strategies that can make the biggest difference.

Guest Blog

We have some wonderful Guest Bloggers lined up, to share their experiences, views and thoughts on a wide range of issues affecting people with CVI. Watch this space.

Research Notice Board

We pride ourselves on working closely with the scientific, academic and research communities. In our resources section we are going to dedicate an area, where those undertaking research, subject to certain checks and conditions, can advertise for participants to help with their studies. This will be a free service, because we feel that the benefits of getting as many people as possible to engage with these studies will help everyone.

This year we plan to extend to make our Reading Tool for children with CVI, called Look easier to find and more user friendly. Another space to watch.

Everything new can be found in our Updates section, and we also share links on Twitter @scotlandcvi and via our Facebook page.

We are looking forward to an exciting and enlightening year.

Best wishes,

The CVI Scotland Team

In this issue...

  • Home
  • Home: Clutter
  • Light Gazing
  • Gordon Dutton's Blog 17
  • Nicola McDowell's Blogs 14 and 15
  • Look
  • Updates

Home

Introduction to our new evolving sections focusing on support in the home.

Home: Clutter

Clutter is CVI's public enemy! Simple inexpensive alterations in the home can be life changing for the person with CVI.

Light Gazing

Why do children with CVI stare at bright lights? Is it voluntary? Is it uncomfortable? We bring together some fascinating accounts and consider possible reasons.

Gordon Dutton's Blog 17

Gordon Dutton explains how a child started to use their vision just because of simple changes to their home.

Nicola McDowell's Blogs 14 and 15

Nicola is a dream teenager, not worrying her parents about being out late...because she won't leave her bedroom! Nicola continues warmly and humorously telling her story of life with unknown CVI.

Look

Our free reading tool, soon there will be a direct link on the homepage, but for now you can access all sections via this link.

Updates

All changes to the website are recorded in the Updates section.

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About Us

At CVI Scotland we are devoted to helping people understand cerebral visual impairments, and together working towards developing the understanding of this complex condition.