Just got back from a great few days camping in the New Forest. Whilst flicking though our photos I found this great photo where Joshua used one of his optimal Null Points to smile directly at the camera, Its usually very hard to get a great photo like this.
…A little delayed (5 months) but something worth writing about. At Christmas 2010 I took Joshua to his first ever panto with my family, unfortunately my husband Ashley had to work over the Xmas period. Jack & the Beanstalk was on over the Christmas period at the Kings Lynn Corn Exchange. This is Joshua’s first time in such an environment, he hasn’t even been to the cinema. We spoke to the venue staff and advised them that Joshua was partially sited and we would require seating near the front. Josh was seated second row from the front on the left side, which helped with his head tit (null point). To my surprise Joshua sat through the whole production. I was very anxious prior and on the night as I thought Joshua would play up or get scared but he was absolutely fine. With unknowns about Vision somewhere like a theatre, Cinema etc… I wasn’t sure if this would be an experience Joshua wouldn’t enjoy but I was wrong. I suppose the low level lighting and sound help with the whole experience and I can say I was so pleased to see Josh drawn in to the play. I look forward to the next panto and hope my husband will be able to come and enjoy the experience.
Picture to the left is a copy of the flyer advertising Jack & the Beanstalk at the Kings Lynn corn Exchange
These are the main things Joshua has struggled with due to his Nystagmus so far.
Uneven sufaces
Joshua often misses steps and trips when walking on an uneven suface’s. This is usually only a problem in an unfamiliar surrounding as he quickly remembers the hazards in our home or places he visits reguarly.
Sunlight
He seems to be very sensitive to light and always wears a hat when going outside if it is bright. Even a bright cloudy day can cause problems as the sun reflects off the clouds and bounces up after hitting the pavement. At the moment Joshua refuses to wear sunglasses. We were also told that wearing sunglasses a lot in childhood can make your eyes more light sensitve. We purchased a shade for the pushchair which was brilliant. (Shade a babe) When the light does glare Joshua finds getting about much more difficult and can miss obsticals in his way, such as toys/objects on the floor. Moving objects he may also miss, such as he may bump into playing children.
Change in enviroment
Joshua when on the move misses changes in the enviroment around him. for example if his is running and somebody opens a door to walk through his vision is not quick enough to see it and he would run straight into the side of the door. The same goes for a running child he often will bump into them causing injury. This is why we look like mad over protective parents at the park etc as we are constantly running around and following him. Obviously there is a limit to that and we must also ensure he has his independance.
Joshua always seems very unhappy for the first 30 minutes after a nap. I am sure this is down to him being disorientated due to his Nystagmus which always seems worse when he first wakes.
He stands almost on top of the television to watch his programmes. After speaking to other parents this is very comon for them to do.
Judging distance
Judging distance his difficult for him, for example last week he went to kiss his baby sister and head butted her as he thought she was further away.
Books and puzzles must be clear and not have busy backrounds.
Tiredness
Joshua will get tired much more easily if there is a lot going on. It takes alot more effort for him to see when he is in a busy enviroment and he is having to work hard. I was told by a visual impairment teacher to try and keep things simple so he isnt having to work so hard to see. For example give his dinner to him on a plain plate that contrasts to the food. if he is given his dinner on a pictured colourful plate it is much harder for him to distinguish the different types of food.
Null point
The null point is the position in the eyes that he can keep his eyes more still. This for joshua is the top right, Joshua has a head tilt when adopting this position. The worst postion for Joshua to see is looking down.
Parks
parks,playgrounds and play areas seem to pose problems for Joshua as it is these sorts of enviroments that seem to have the most hazards.
There are many uneven sufaces, drops and holes in play equipment (firemans pole etc).
swings – Joshua will often run behind them
running children – including Joshua
There is so much going on that he finds it difficult to focus, although does cope well.
Has mad parents running around after him, to ensure less injurys.
these are a few that spring to mind. I will update if i think of anymore.