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How my parents support me and my vision impairment- by Elin @myblurredworld

My name is Elin, I am a 19-year-old student and blogger from North Wales. I was diagnosed with a degenerative eye condition called Retinitis Pigmentosa (RP) at the age of six and have since been diagnosed with another condition called Optic Disc Drusen shortly following my 19th birthday. I was registered blind/severely sight impaired when I was twelve years old and my vision has deteriorated drastically over the years meaning I have very little remaining vision to this day. One of my main goals in life is to raise as much awareness as possible surrounding the topic of vision impairment. … Read more

Battling for answers – My quest for the non-existent definitive.

Scarlett is five years old and in her very short life she has had a hell of a lot of things thrown at her.  At four and a half months we were told she had a problem with her vision, which in itself is an awful lot to comprehend, but some days it would be wonderful if it had just stopped there! I speak with many parents through my role of running Through Scarlett’s Eyes and it is clear that we all share one thing in common, the shockwaves following the diagnosis of a sight problem continue to plough throughout … Read more

Nystagmus experts will provide research updates at Open Day

Many of the UK’s most knowledgeable experts of the eye condition nystagmus will be attending the Nystagmus Network Open day at the Hilton Hotel, Reading on Saturday 7 May.  The Open Day is an annual event where people with the eye condition and families of children affected by nystagmus gather to meet vision scientists and eye health professionals. The day will feature updates about; identifying more and more of the genes associated with nystagmus and new tests to measure how nystagmus affects vision. Current work includes, looking for answers to questions like whether contact lenses help and whether there’s an … Read more

To fight or not? That is the question.

When things in life become tough, you have to make decisions that will create a huge impact on your life or on the lives of your children. As parents doing the right thing is so important, when you have a child that is capable of helping with those decisions it can make the situation a whole lot easier to both achieve and contend with. We as a family have had to deal with a lot over the past year and a half, making choices, dealing with tantrums and tears, but most of all finding and realising that family comes first … Read more

25 things only a mother of a child who is visually impaired would know

Becoming a parent to any child is magical in its own right, but below is a list of observations about things only a mother of a child who is visually impaired would know. Myself and a group of other super-mums have helped to create this list!  How many of them resonate with you? We all as parents know the fear of keeping eyes on our children constantly to make sure they are safe, more so if your child has a visual impairment, the stress of completing this task increases ten fold! Oh why isn’t it humane to put a lead … Read more

Visually impaired toddler toy and recreation information pack

Play and recreation are key to children in the early years.  Children learn through play and  toys are very much designed to be aesthetically interesting, which in turn generates an interest to engage with the toy.  It is important to promote hands on or kenetic learning with a child who has a visual impairment.  Also, you must consider a full sensory experience for the child and make sure you incorporate activities or toys which are stimulating to the other senses.  The skills that are learnt through play can be transferred to other aspects of the child’s life and can help … Read more

Henshaws Activities

Henshaws are a great charity and have supported myself and Scarlett from the very early stages.  I have been on a number of their events and myself and Scarlett have always had a great time! This month is no exception, with touch tours and adrenaline based excitement, there is lots of information about the up and coming festive season.  A ‘save the date’ for their Christmas bash and they are also looking for potential budding Mary’s or Josephs to take part in their Christmas Carols By Candlelight event. These events are all Greater Manchester based, all priced wonderfully and there … Read more

Mia-May her journey so far……Daddy’s story

So I have been reading a few stories and articles online since finding out my daughter Mia has Leber’s Congenital Amaurosis (LCA) and all of these articles and stories have been from Mums so I have decided to write a story about Mia from her Dads side of things hoping that other fathers will read and see this and help them through this challenge in life from a dad’s point of view. Mia was born in July 2014 she was a breach baby and was born through planned c section which Jo (Mia’s mum) had a healthy pregnancy and the … Read more

Best piece of advice for a parent who is raising a child with a visual impairment.

I was recently asked by a QTVI, “What would be the best piece of advice you would offer a parent who has a young recently diagnosed child who has a visual impairment?”  I have been asked this question many times and my answer tends to be don’t wrap your child up in cotton wool.  I know it sounds silly but as parents it is our job to teach our child to be independent, learn from their own mistakes, explore and be encouraged to learn through experience.  Sometimes it can be difficult as our natural parental instinct is too help and to never see … Read more

Sensory Processing Disorders and Audio Overload- What is it and how can we prevent it?

Scarlett has always been somewhat of an enigma when it has come to working with her.  I can appreciate that all children are unique but in terms of the normal development patterns of a VI child she follows quite an unusual route.  Of course we are still working through the ‘is it autism’ debate and we are still waiting to see the right doctors to investigate this further.       Following observations by the Educational Psychologist I was recommended to read the ‘Out of Sync Child’ book by Carol Stock Kranowitz.  This book is big on the autism circuit … Read more