Nystagmusblog has now been upgraded. For anyone returning to the site you will notice that there has been a change to the look and feel of the site. We will be going back to the roots of Nystamusblog and as part of this our Forum will be no more, It simply wasn’t used the way I thought it would.
Instead There will be links to the 2 biggest forums out there:
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!!
This is one of the scariest questions you may be asked. It is one of those subjects that only you as a parent can decide if its best for you/ your child or not. I have to ask this question to many of my patients and its often the time they will feel the lowest.
Remember you or your child are exactly the same person before you were asked this. It does not mean the vision is worse or it will be worse it is just clarification on what your childs vision is. It is a voluntary process and you can take your child off it at anytime. Many parents think that this will stop their child from having the right to choose whether to drive ot not. If he/she decides they want to give driving a go and there vision is now sufficient according to driving regulations they can be taken off the register.
It will always help with a DLA claim which may come in handy if you need to purchase some lovely expensive magnification equipment for your child – Its always good to have the extra cash for assistive technology or resources that your child may need.
It will help with concessions. Why should you pay full price when visiting the Zoo when your child can only see half of the animals?? Many of them are camouflage or hiding making it very difficult for someone with a visual impairment to see.
The most important pro of having your child registered is the involvement of your local Sensory Team and Visual Impairment Advisory Teacher. As soon as you child is in a setting whether it is a nursery/playgroup or school the visual advisory teacher will come out to the setting and do exactly as the title says……Advise them on how they can help a child with a visual impairment access everything the others do. For example:
Where they should sit in class
Give teachers ideas on practical issues like having a glasses and hat box near the door for easy access at playtime.
painting the edges of steps yellow
Use of high contrast
The list is endless – They are wonderful.
Registration can also feel a weight off your mind when you don’t have to keep proving your child is visually impaired, You have a yellow card that does it for you!!
It helps access all the great support groups and activity fun for partially sighted children. LOOK, Actionnaires, Blind childrens society.
Charities that have the word Blind in them always put me off but since working for Action for Blind people it has made me realise it is a name and they all cover anybody with a slight visual impairment to severe.
Some parents feel that registering your child as sight impaired or Severely sight impaired is “a label” Its a choice and everyone feels differently. I however feel if your child falls into the registration criteria (ask your ophthalmologist at your next appointment) then the fact is they are already sight impaired and a piece of paper will not change this. The way we look at it is visual impairment will always be part of Joshua’s life and we want him to be confident about how it effects him and and not to shy away! As soon as Joshua was registered the support and servces found us instead of us searching for them and information.
All of the things mentioned can be accessed without a registration. If your child has a visual impairment they are entitled to the above, it just helps prove it quickly. If you want access to the VI teacher but do not want registration you can self refer by calling your local Social Services helpline.
You can request a booklet on the “Benefits of Registration” either at your local hospital, RNIB – also online or through social services.
All advice and information is purely based on my parental experience and views.
Following on from our cinema experience I have completed some research regarding the ‘carer card’ the staff told us about. Looking on the Cineworld website I found the following;
http://www.cineworld.co.uk/terms
3.7 Customers entitled to a free carer’s ticket must provide a valid Cinema Exhibitors’ Association Card (CEA card) or locally issued disability card. Please see www.ceacard.co.uk for the full terms of use. Guide and Hearing dogs are welcome but other animals are not permitted on the premises.
My wife and I hadn’t heard about this card, so here is some more useful information that will help you and your family when going to the cinema.
The following has been taken from the CEA website;
Welcome to The Cinema Exhibitors’ Association Card Website. This is a national card that can be used to verify that the holder is entitled to one free ticket for a person accompanying them to the cinema. Terms and Conditions of use apply which can be downloaded by clicking here.
The card is valid for 1 year from the date of issue for cards issued since March 2009.
Printed application forms are available from cinemas across the UK supporting this card.
You can download an application form to print out and fill in.
We are unable to provide application forms by post.To apply for the card you will need submit proof to show that you meet one or more of the following criteria:
a) Be in receipt of Disability Living Allowance or Attendance Allowance.
b) Be a registered blind person.You will also need to supply a passport-sized photo with your application to appear on the card.
A processing fee of £5.50 is chargeable per card. This is to be sent along with the completed application.
If you wish to search for participating cinemas please click here.
For information and frequently asked questions about the scheme please click here.
The RNIB can offer information about audio description services in cinema, on DVD, on digital television and in the theatre.Visit the RNIB web site.If you require information regarding subtitles and audio description for cinemas visit http://www.yourlocalcinema.com/
If you have any difficulty, please contact us at the address below:
The Card Network
Network House
St Ives Way
Sandycroft
CH5 2QSTel: 0845 123 1292
Fax: 0845 123 1296Minicom / Text phone: 0845 123 1297
Email us
Breaking The Language Barrier…Opening The Door To More Resources & widen your knowledge, information and networking.
For most people searching the internet in your favourite search engine will more than likely return content not only relevant to what you’re searching for but also returning results in your language. English being a fairly universal language there are lots of sites out there about Nystagmus, there are also sites in other languages that may or may not be returned when searching or you might simply dismiss due to the fact that you cant translate.
For example if you hit a French blog and you don’t understand French, let’s face it not everyone is multilingual, you will probably close the page. This doesn’t have to be the case. Google chrome, has an inbuilt language translator. Google chrome is simply Google’s own web browser, its an alternative to Microsoft’s internet explorer, or Fireboxes – to mention the most popular ones.
If you come across a page that isn’t in your native language it will present a pop up bar asking if you would like to translate
simply click the Translate button and the text is instantly translated, with no need to install anything onto your computer. Obviously the Google Chrome browser is a pre-requisite.
You now have access to even more content on the internet which is good especially to someone searching for ‘Nystagmus’. If you want to download Google chrome you can by clicking here, its Google so its safe and its FREE.
If you would prefer to stick to your existing web browser and don’t want to download Google chrome you can still translate content by using the below Google link.
On the down site you will need to copy and paste content from the website into this page.
You can learn more by watching the following video
http://youtu.be/HqmUbNGkM9I
I am very excited that I have been appointed West Suffolk Hospital’s Eye Clinic Liaison Officer, based in the Eye Treatment Centre.I am employed by Action for blind people. I started after christmas and it is going well. The patient is referred to me for support and information after they have been diagnosed with an eye condition after seeing the consultant. I am also there to sign post people or parents to any local support groups or services that are available to them. I am going to Birmingham next week for my intense ECLO trainig course so i will keep you updated.
Jen
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!
