Jack, I, and Auntie Jen attended our first Nystagmus Network (NN) Open day in London yesterday. I found it incredibly useful, and learnt a lot more about the condition and what to expect for the future.
The morning consisted of a short AGM (annual general meeting), an interactive session for parents of diagnosed children, followed by talks by professionals about the latest research findings. In the afternoon there were sessions on education, what’s it like to have nystagmus, plus a chance to ask Q+A’s to a panel of experts, and provide feedback.
Throughout the day we were asked swap tables (to music not unsimilar to the Benny Hill theme tune) to meet and chat to as many different people as possible. We spoke to several parents, people with nystagmus themselves, and a healthcare professional. The first lady we spoke to had a 22 year old daughter with nystagmus who is just starting her 4th year of Medical School at SheffieldUniversity. We then spoke to a middle aged man with nystagmus who worked as an accountant for the NHS. We also got to meet Ashley and Jen Bacon who own the Nystagmus Blog at the parents session. It was really good to meet them as their website was a huge comfort when Jack was first diagnosed.
I took some notes about new things I’ve learned which I’ve shared below;
In general parents have found their children have been well supported at nursery and primary schools. The main problems have been when they start at secondary school where there are multiple teachers and multiple classrooms. However, there seem to be big differences depending on where you live, and with the individual schools and teachers involved.
The Maisy and Meg and Mog books are very good for young children with nystagmus.
As soon as your child attends an establishment e.g. nursery, school, you are entitled to complete an IEP (Individual Education Plan) to document specifics that will help your child on a day to day basis. These may include things like providing them with a an easily accessible box to store a hat and sunglasses for when they go outside (many children with nystagmus are sensitive to light), ensuring they are always first/last in the queue to collect their coat to make it easier to locate it, ensuring that teachers explain in words all activities that are available for the session and where they are rather than your child spending a lot of time figuring it out for themselves.
Encourage your child’s teachers to make a note of any differences between your child and others of their age as and when they spot them to keep you up to date, but more importantly to build up a portfolio of evidence you can use when applying for things such as School Action, School Action Plus, and statementing later on if required.
Getting support for your child is a two way thing. Parents have found they’ve received a lot more support if they’ve got involved in nursery and school parent/teacher groups.
There is evidence to suggest it’s possible to reduce the impact of your child’s nystagmus by stimulating their eyes particularly up to the age of three. You should encourage your child to look at black and white and contrasting images and to track objects from an early age. It’s possible to download applications with such images onto your computer or smart phone.
A recent study into the difference between wearing glasses and contact lenses for people with nystagmus has shown that the use of soft contact lenses decreases visual acuity (what can be seen on an eye chart), particularly for people with an astigmatism. It showed that hard contact lenses are no better or worse than wearing glasses.
There is a study showing that nystagmus has been cured in dogs so there is hope for humans in the future, although it’s believed this is a long way off yet.
In the Q+A session, the panel of experts confirmed that alcohol and cannabis can dampen the effects of nystagmus, but none were willing to comment on whether the ability to see after consumption is improved!
For Public Sector jobs it’s possible to get a guaranteed interview if you have nystagmus, provided that you meet the minimum requirements for the job.
At interviews, turn nystagmus into a positive, by sharing your experiences and what you’ve had to achieve to overcome problems you’ve faced e.g. because it is difficult to read train timetables, you have become an expert at planning well in advance, and at using up to date technology to help you get from A to B more easily.
Provided you book 24 hours in advance, it’s possible to book someone to meet you at a rail station, escort you to onto your train, and then help you get off at your destination. Click here for further information.
All in all the open day was a great day and I highly recommend it. It was confirmed next year’s will take place a bit closer to home at Manchester