Great to see that Nystagmusblog is growing, connecting and helping others.
1,970 visits in 2010
3,142 visits in 2011
Nystagmusblog.co.uk now has an official Logo. I hope you all like.
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:
I thought it was about time to have a positive post! I am so pleased that Joshua has settled in to mainstream school brilliantly. He loves it. He is very sociable and his teacher has told me that he is very popular within the school.
He is very keen to learn and his Nystagmus currently is not effecting his confidence at all. He has bounced in everyday and has n’t said once that he doesn’t want to go in.
His school originally tried to get 15 hours a week funding for a Teaching Assistant but were denied. I was originally slightly worried about the amount of hours they were hoping to get as i wanted to see how he gets on first. They assured me the TA would just be an additional member of staff so they could teach in smaller groups etc. They however did not get the funding and at the moment Joshua as excelled and doesn’t need it. This of course is at present he is only in reception and will probably need more assistance as he gets older…..but its a good start!!!
His teacher and school have been fantastic and have the correct equipment (laptop. CCTV etc) and are aware of his additional need but have not put the impairment before Joshua. He is treated exactly the same as his peers.
Joshua has a Visual Impairment Advisory Teacher who goes into the school to help with his I.E.P and to make advisorys. When ours recently visited she put a request that the concrete steps where highlighed in yellow on the edges and the black supporting post located around the school were painted with yellow stripes. Also a hat and sunglasses box were put in place near the back door for easy access. A VI Teacher usually visits every half term.
Joshua is progressing at exactly the same rate as his peers.
All in all it has been a better school start than i could have ever dreamt of!!!
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!!
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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.
The purpose of this video is to help people understand how a person with albinism sees the world around them. It highlights the four factors that affect the vision of a person with albinism – Photophobia, Nystagmus, inability to see find detail and poor depth perception.
I dont know if many people are aware of the following, either way there’s no harm in reminding you all. There are ways charities can make extra money by using special web links to sites such as Amazon. I came across an article on the money saving expert web site. I have provided an extract of the article;
Earn charity funds or Nectar points
It’s possible to give charities a boost at no extra cost to you. Simply click through to Amazon from a charity’s special link, log-in and click on the product you want.
When you grab something, it’s recorded and the charity is paid cash. The charity gets around 5% of your purchase – no small beer, especially as it costs you nothing.
Click through to Amazon from there BEFORE you put anything in your basket, otherwise the charities won’t get the money. Charities that do this include: Voluntary Service Overseas, Royal National Institute of Blind People and Epilepsy Action.
If you work for a legit registered UK charity, add it to the Amazon Charity Clicks thread, so MoneySavers can help their favourite causes.
So if you are purchasing anything from Amazon please remember to visit this the RNIB using this link.
I’m going to look and see if the Nystagmus Network have set themselves up with Amazon or other companies that offer similar rewards as I would like to add a link on my site to make it a little easier.
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.
