Ring your local Action team to find out what is on offer in our local area, We found out its brilliant!
http://www.actionforblindpeople.org.uk/our-services/children-young-people-and-families/
We recently had a free day out to the Zoo with Action It was so lovely to network with other parents and children.Joshua has made some great friends and so have we, all with people that can relate. We can’t recommend it enough!!
Since the Nystagmus Network 2011 Open day we have had a jump in followers on twitter. It’s fantastic to see events such as the Nystagmus open day connecting people.
After attending the NN open day on Saturday it is very clear that education is a big worry and concern for parents. I will update the blog on helpful tips for your child starting school. For example what an I.E.P is Statements etc.
I will also put a bit on about Who’s Who and what they do – Hospital staff and professionals you will come into contact with.
If there are any other subjects you would like more information on please email me!
Our Nystagmus Network 2011 open day tickets have been booked. You can make you booking by visiting the following link. The NN 2011 Open Day will be in London and October 22.
…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
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
Jen and I will be attending the Nystagmus open day Saturday 3rd. This will be our first time at the open day and as such will be interesting to see what Nystagmus research and development is out there. Personally I’m not really sure what to expect but I’m looking forward to going.
I hope to take some photos of he event and maybe some of London (perhaps I might see some famous people), depends what the atmosphere is like when we get there. I don’t want to be the only person snapping away like some strange weird person.
I will also update on the event itself so watch this space.