Mild Nystagmus and school

[Lou]

The amount of times my mum rang the school! She had a meeting once with my teacher, the special needs teachers and some idiot from our local council who went to different schools helps those who had some kind of disability. His name was Richard Pratt (I'm not saying a word!) And my teacher (who was the nastiest thing ever...She lived in a road called Love Lane, so should have been called Hate Lane instead!) said 'All children who are behind are pre-madonnas!! My mum couldn't believe it! But this teacher in particular wanted a class with 30 perfect students in it, which I clearly wasn't, but she was so mean and nasty that I actually started wetting the bed (I was and having nightmares. I even wet myself in class because I was too scared to ask to go to the toilet.

I'm not saying all teachers are like that, because they're not. As you've said, most of them want to help, but they may have other students who have various different problems and therefore, have lots to deal with.

If things don't get done, keep pushing until they are! It's the only way

[Angeleyes]

wow! thank you all for your support. i never expected to get such good feedback! this site is brilliant, i felt totally lost and confused when i first found out, worrying about where to turn next but you have all helped make this alittle easier for me so thank you
in regards to getting him statemented the SEN co-ordinator told me she couldn't do that as it wasn't affecting his learning yet. however there are certain things that i think it does affect and as he is still only in reception i suppose its not that obvious to some as the work they do in there is not the national curriculum yet, its EYFS (i know this as i work in a nursery) so surely it would be too early for her to make this kind of judgement??
if i felt in the future that it was affecting his learning and they still didn't statement him how would i go about doing it myself (for future reference)

[Angeleyes]

Well! Have just received Taylors school report and it makes for interesting if not a bit angering reading Spelt his name wrong Half way through it turns into a report about another child States he doesn't need additional help from SEN Behaviour needs working on ok fair enough if he is misbehaving but we all know he is likely to get more tired and grouchy than most due to constantly straining his eyes to see! Can't see them taking that into account though. Maybe this school are not so good after all feeling a litlle disheartend now.

[Sofie]

Behaviour needs working on ok fair enough if he is misbehaving but we all know he is likely to get more tired and grouchy than most due to constantly straining his eyes to see!

Could his behaviour also be due to him not getting the help he needs, therefore he can't do his work, meaning he plays up?

[Angeleyes]

Yes it could be, very good point I will mention that to them aswell. I have a parents evening with them on Thursday so I will be making my concerns LOUD and CLEAR

[Lou]

States he doesn't need additional help from SEN .

You should definitely discuss this with the school. My mum always says that being borderline is almost worse than having it severely! I'm grateful that I do only have it mildly, but sometimes we're overlooked and it looks like we're coping, but we're actually not if you see what I mean. And also, people don't see my eyes wobble so they wonder why I can't see something.

[Angeleyes]

I've finally got round to joining the nystagmus network. i'm having trouble ordering leaflets and the parent pack which is free to new members, it keeps asking me for my card details even though i've logged in. any suggestions?

[Sofie]

have you emailed the web mater? info@nystagmus.org (i think)

[Lou]

Yes, that happened to me when I wanted the driving and nystagmus leaflet. Because you're technically ordering something, even though you're not paying, it still asks for your card details and I even tried putting mine in and it still doesn't work because you're not buying anything! I emailed them and asked and they just sent it to me.

By the way, I'm writing an article to fo in "Focus" The NN magazine so look out for it

[Angeleyes]

I managed to speak to Penny Marsh via Facebook and she said she has sent a message to James Taylor? I think thats who she said anyway to see if there is a glitch in the system and will let me know. If not i'll just use the email address then.
I will look out for it lou will it be in the next one?

[Larry]

As a point of interest, this is James’ own website but he is also the Webmaster for NN.

[Lou]

I think it'll be in the next one, I have a deadline, 10th August. It's quite exciting! :)

[Angeleyes]

I thought his name sounded familiar
I look forward to reading it Lou!

[Angeleyes]

All sorted
James ever so kindly sent me an email, there seems to be a bug so have sent him a list of the leaflets I would like so he can send them to me.
Now I can go into Taylors school fully armed!