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A lovely book but a word of caution for partially sighted children.

Joshua loves his books, he always has. For Christmas Joshua was given a Peter Pan popup book. With so much excitement built up from opening all his presents he unwrapped this present to find a book and immediately opened it however he wasn’t expecting a pop up book (this was the first one he had) the very first page is a pop out Big Ben clock which extends out of the page into a point. When opening the book this point caught the top of his eye lid and started to bleed – an unexpected injury from a book, but this goes to show it can happen. Due to Joshuas Nystagmus he does tend to hold books close to his face so he can see, so for most children that are not partially sighted this ‘pop out’ wouldn’t normally cause injury.

Don’t get me wrong this is a lovely book and Joshua now reads it knowing exactly what to expect when opening it. If you have a partially sighted child that receives a pop up book as a gift (or you’re buying one) it’s worth opening it first to check for any dangerous pop outs. It so happens the other pages are not as pointy and sharp.

Joshua’s playgroup has recently receiving funding  for a ClearView CCTV Magnifier.

Objects placed on the movable reading table can be magnified on the crystal clear display. This is a great tool to help Joshua with reading small font, viewing tiny objects as well as having fun magnifying objects. These photos were taken at playgroup showing Joshua magnifying a leaf and his hand.

The design enables easy magnification of any object at the twist of a button. A great device to help Joshua. A big big thankyou to his Playgroup and Visual Imparement Team for sourcing this. This is a great example to show there is help available out there you.

Joshua is 3 years old and chatting more and more each day, asking lots and lots of questions (as I’m sure I and everyone else did once upon time). In conversation it’s become very apparent that Josh has a very good memory. I know that young children are known to have ‘sponge memories’ soaking in as much information as possible but there are certain things that I wouldn’t really expect a young child to remember.

I think the best examples of Joshua memorising is when we are driving. Joshua’s sense of direction and location seems to be incredible, considering he is visually impaired and in a moving car.

Josh will point out;

• The other day he pointed out his mums work as i drove past. He has only been there a few times and we dont regularly drive past.
• Josh has a thing for bridges (under dual carrageways and railway lines) there is one in Colchester and Bury St Edmunds, he knows when we are approaching and will say. ‘we are going under the bridge in a minute’
• If on route to the grandparents he knows which grandparents we are going to see from the direction/location we are driving. Joshua once got a little upset when we said we were visiting granny and granddad but didnt take the turing he was expecting (we had to get petrol). He was a little upset until we explained we needed petrol then would be back on our way.
• When I take josh to playgroup I like to play a little game and pretend I’m lost.  I ask Josh for directions and pretend i dont know what way to go, and sure enough he knows and points to the road that I need to turn down. Amazing.
• He is also very good at pointing out cars that look like our old car and grandparents and I mean exactly, colour, make and model.

Do 3 years olds normally memorise this kind of information….This leads me on to the reason I though I would post this. I was reading a blog entry on theshiftyeyesblog.com and there was an article from the telegraph.co.uk titled;

‘Shifty eyes may be a sign of good memory’

The article was about research on how ”Moving your eyes from side to side for 30 seconds can boost your power of recall…”. If this was to be true just imagine the brain power enhancement of someone with Nystagmus. Perhaps this explains why Joshua memory is so good.

I look forward to any further findings on this topic

‘Shifty eyes may be a sign of good memory’

By Roger Highfield, Science Editor
Published: 12:01AM BST 05 May 2007

Moving your eyes from side to side for 30 seconds can boost your power of recall, researchers say.

Horizontal eye wiggles are thought to cause the two hemispheres of the brain to interact more, improving the ability to retrieve memories.

Scientists at Manchester Metropolitan University found people who made horizontal eye movements recognised significantly more previously studied words than subjects who did not make such eye movements. They also had fewer errors in their recall.

Dr Andrew Parker, whose findings are reported in the latest issue of the journal Brain and Cognition, said: “That such a straightforward experimental manipulation can bring about enhanced memory for studied information and lower the number of memory errors is quite exciting.”

The work suggests horizontal eye movements could be helping people to remember.

“We are conducting more research to clarify and extend the current findings,” Dr Parker said yesterday.

“It may help someone recall an important piece of information for an exam.”

This has really helped Joshua with his drawring at Pre school and I can imagine will be very helpful when he starts to write.

http://www.crossboweducation.com/Pencil_grips.htm#Writing Slope

My local Children’s centre has been so supportive to me and Joshua over the last 2 years. Joshua attends an Opportunity group for children with additional needs every week and it has been a life line. It’s just as much for parents/careers as it is for the children everybody understands what you are going through, with things like hospital appointments feeling alone /different. It’s such a nice support network of people. Some children’s centres have groups for specifically visual and hearing impaired children. My Sudbury children’s centre (phoenix) put me in touch with a group (visual impairments) in Ipswich and it was fantastic as i finally met another parent and child with nystagmus. I only went a couple of times as it was quite a distance but was def worth going.
Joshua has so much fun at the Opportunity group and has made such good friends with other children. All the children can be themselves without people judging and watching them. It’s fantastic!

I always thought Joshua would grow out of being a bit cranky after a nap but it seems this characteristic is a major part of him having Nystagmus. It takes Joshua about 30 mins to an hour to be his happy self after a sleep. He will appear grumpy and sulky but i think he is struggling with his eye movements. He will stay in one place and moan. He will often sit with his eyes closed and be very quiet,  and when he does look he almost scrunches his face with half closed eyes. After about 30mins -hour its suddenly its like a light switch he gets up and starts interacting with people and playing just like he usually does. If anyone else finds this please do comment.

We went to West Suffolk Hospital yesterday for Joshua’s routine checks. After a sight test using pictures getting smaller and Josh wearing 2 different types of glassing each covering the opposite eye the ophthalmologist discovered he see’s better with his left eye and thinks it is a good idea to start patching it. We then saw his eye consultant who dilated his pupils with drops and looked into the back of the eye. He discovered Josh had astigmatism in the right eye which explains the poorer vision. He said he thinks patching works well in children that do not have nystagmus but ones that do it can be very hard, which I can understand. Joshua’s nystagmus would become more rapid in the right eye whilst the left is patched and would find getting around twice as hard. The consultant is going to wait 3 months to check the vision again encase the testing was wrong as  Josh wasn’t very co operative in the sight test, and go from there with either glasses or patching. I’m slightly worried as the ophthalmologist was a bit concerned the longer we wait the higher the chances the vision deteriorates in the right eye. She did however say that if he needs glasses for something like astigmatism its best to go with them before patching. (Sorry bit confusing).  Hopefully in 3 months nothing changes.  I trust they have made the right decision.

I was recently asked to come and talk to some nurses and Doctors about what it was like from a parents perspective to have a child diagnosed with Nystagmus. This was very scary as they originally told me it would be for about 10 people but when i got there it turned out to be 75!!  I have never spoken in front of a group of people before and was scared at the thought of 10. I had to think fast so managed to get my blog page up on the huge screen behind me to fill some time. It also came in handy as we have a video clip of Joshua’s eyes when he was a baby.

I thought this was so good of the hospital as they primarily wanted me to talk about all things they could improve on to help future parents. Joshua see’s Doctor Vivian and he really is a brilliant Consultant so it was hard to think of things to moan about. The main one was the lack of literature which they said willl be promptly changed. Brilliant hospital, we are very lucky.

Jen