Dyslexia and various other issues - Psychomum needs advice

[FlameBat]

Only a brief run down, will email her a link to this thread later.

Her DD2 (11yrs) has been struggling, finally had various tests at school and she has dyslexia, issues with eye muscles, visual processing problems etc - Her reading and understanding (on various sections of the test) ranges from 5 1/2 yrs to 8yrs.

She is being sent for eye exercises etc which are between £20 & £40 a time.

She has been told she is something like 1% better than the % needed to be statemented.

How does Psycho go about getting a second opinion or something to fight for statementing? Is there any way she can get help with the costs of these eye things?

We don't know where to turn, the best I could come up with was the GP she most trusts.

I'll get her on later to give you a full list.

How is a girl meant to cope at senior school when some of her reading/writing and understanding is that of a reception child??

[cornsilk]

If there has already been an application for a statement that has been turned down then you can appeal against that - can SENCO help? I don't know if you can apply for any sort of DLA to help pay for the eye exercises but it might be worth a try. Also look on dyslexia action and british dyslexia association websites for advice. There used to be a poster that was a dyslexia teacher but I don't know if she's still around - hopefully someone else will.

[swedishmum]

If it's an optometrist it should be free on the NHS - go through the gp for this and don't let her be fobbed off!
This whole dyslexia thing drives me mad - my son's difficulties are far less but I've ended up re-training as a dyslexia tutor to help him and I'm constantly angered by the lack of knowledge in primary schools. I assume she's on School Action plus? She'll need this to get support at secondary up and going. I'd make an appt with the SENCO at the secondary school - he or she may have more knowledge of the system and advice on statementing. IME it's the people who fight the most who get there in the end. Your friend really needs to get the headteacher on side.

[swedishmum]

www.ace-ed.org.uk may be some help

[FlameBat]

I think it was the senco who told her she couldn't be statemented!!

Emailing her the link now and hopefully she can give more accurate details - thank you for the help so far

[AttilaTheMeerkat]

"She has been told she is something like 1% better than the % needed to be statemented".

Bloody SENCO, well honestly!.
Actually what she has been told here is illegal. LEA's know the law and cannot have such blanket policies.

It is very hard to obtain a statement for dyslexia but it is not impossible. Ignore the nay-sayers and apply for the statement yourself. Parents have far more power than school does in this regard anyway.

IPSEA should be able to offer more advice re this whole area - www.ipsea.org.uk.

Would suggest that this is posted on the Special Needs board of this site - you'll get more responses that way too.

[isgrassgreener]

Flamebat, there seems to be this general thought that you have to be 4 years behind to get a statement for dyslexia, I know someone who was even told that by the LEA, but as Antilla says that is not the legal position, there is no directive anywhere that states this.
In my experience parents who are willing to fight and take it to tribunal can win and get a statement for dyslexia.
My DC goes to a dyslexia/dyspraxia school and there are some children there whos fees are being paid by a statement, so it is not impossible.
What is important is proving that the level of intervention that she gets is not enought/not working.
What level of support does she get at the moment? It amazes me that she is that behind and the school have only just found out that she is dyslexic, they could have been looking at that before now.
Your friend must be really worried. Has she found out if there is any dyslexia support groups where you live? they can be very helpful.

[FlameBat]

She's been offline for the last few days so hasn't been able to look at the links yet.

Quick history - was at a terrible school until about 2 years ago (told her that DD2 didn't have any problems, you just have to get into "DD2 world" to understand her writings ).

She moved to a much better school, but various things like the first school telling the second they were doing something, notes not turning up etc, it all kept being held up until into her last term there (this summer just gone), then they announced it was being passed over to the secondary school to get everything in place when she got there.

She started there this September and has finally had this whole barrage of tests which has brought this up. Apparently it was the LSS (? is that a borough kind of thing rather than school SENCO?)) that said about the statementing etc.

She is working with a dyslexia woman for 1 1/2 hours a week - but I'm not entirely sure what she is doing with her (will get her to tell you).

The problems with her eye muscles means that she can't adjust properly to focus on the board and then on her paper, plus she is only able to see 3 letters of the word at a time, so her notes are a mess - she came home with a recipe talking about self raising sugar because she merged everything trying to write it down.

The ophthalmologist (I think it was him) has sent her to the LEA building to see if there is any way to get help with the fees, if nothing else they should be able to point her in the right direction.

On top of it all, her DS1 (7yrs) is very very similar to DD2, so she is now fighting to get him thoroughly tested too in the hopes of starting much earlier if he does have the same issues

I'm going to look for support groups now, and hopefully she should be back online later too.

Thank you so much - the whole statement thing sounded dodgy to me, but not having any experience I wasn't sure if I was all for fighting a losing battle iyswim.

Will link in main SN too

[maverick]

She may find the info. on the following page useful: www.aowm73.dsl.pipex.com/dyslexics/should_I_options.htm

Also, absolutely everybody interested in the teaching of reading should watch the CH4 TV series of programmes 'Lost for Words', on next week:
www.channel4.com/culture/microsites/L/lost_for_words/

After that, if you want to know more, then come to the Reading Reform Foundation conference in London, 9th Nov., and hear talks by Ruth Miskin, Sue Lloyd, Prof. Diane McGuinness and other synthetic phonics experts:
www.rrf.org.uk/messageforum/viewtopic.php?t=3026&sid=8c2ff86408920942271723ad4f9305cc

[psychomum5]

hi all, just managed to find this and read replies.....thanks all.

very sorry i not come here sooner....the kiddies and i were all involved in a nasty car accident on 22nd oct (not our fault, a rather stupid man decided that he could come out of a side road and round a bus to go down another side road without thinking there may be a car on the other side of said bus. head on collision, injuries etc.....hence I not been here until a few days ago and forgot about flame setting up thread for me!)

anyhoo.....DD2 dyslexia.

as flame has said we have had crap support from schools etc.
I pulled all DC's out of their previous school as the responce for me asking for help with DD2 (when I commented that I could never understand her writing) was ''to get into the worl of DD2"!!!! I mean WTF, I have to get into her world???? Surely SHE needs to get into OUR world...........

well, anyway, I pulled them out, but then had the fight in the next school. Tp be fair to them tho, it wasn't really their fault that things went so slowly. previous school failed to send up notes, then claimed they had, then claimed they were lost, blah blah blah.
new school in the meantime set up IEP's and extra help, and then when it came to her SAT's set up a reader for the maths and science papers and a scriber for the english paper. She got level 4's, which I am sooooooo proud of as with all her probs I never expected..
It did go in her favour tho as when the lady came out to see her she said it kind of prooved there was a problem as she clearly had normal understanding making the reading and spelling difficulties more obvious (IYGWIM).

the only prob we then had was that they refused to test her until she went up to secondary school as they said it would be easier to get her the correct help there. I was sooooo angry as i felt she would slip thro the cracks once there but heyho, what could I do, I was only a parent......!.

well, they did indeed carry out promise to test, she is REALLY BADLY behind, as flame said, age ranges for different things go from 5 1/2 to 8yrs, made me cry! BUT, and here is the bad part, she needs to be in the worst 2% to be statemented and she is in the worst 3%.
Having said that tho, she is on school action plus, school have also given her a tutor who comes to our home for almost 2hrs a week (so pleased with that I have to say), and she has a helper in certain classes.
we have also taken her to an optomotrist(?spelling?), who DX poor muscle control as well as upping her glasses prescription (ooh, and did you know, apparently it is more common for dyslexics to be long sighted and need glasses too?? I never did!)

she has since had lots of therapy (eye gym as she calls it), and her focus distancing has upped from 7 to 10 (she needs to be 12 for her age).

problem now is all the cost. It was £60 for initial assessment for her eyes, then £20 per wk for eye gym (6wks worth). we now need to find another £30 for the next test, then £40 after that for something else. new glasses cost £50 has we had used her NHS voucher in specsavers (even tho they were wrong in the prescription but that is another rant), and we also need £60 for a special program for her PC.
grandparent so far are helping (fab people), but surely they shouldn't have to.

the LEA DX her, told us what we HAD to do regarding eyes, PC programs etc, then assume we can pay! we would find it should we have had to, it is her education at the end of the day and therefore hugely important, but WHY. she is a child who was ignored for several years and now it is down to us to make right something they should have started helping with when I said she had a problem. she would never be so far behind now had they listened back then !!!!

and what makes all so much worse now is that it is clear to me that DS1 has similar issues yet when I asked for help they fobbed me off AGAIN. GRRRRRRRRRRRRRRR

and sooooooooooo sorry this is so long. thankyou for reading should you have stuck with me

[aquariusmum]

the others are right, the SENCO can't just say she's in the 3% so won't get a statement. If you send a letter to your LEA head of SEN saying "I would like to request a statutory assessment of my child's SEN, under the 1996 Education Act, adn point out that she is at 5 1/2 level on some things, I would think they would have to consider at least assessing for a statement

[psychomum5]

so would this work tho? it was the dyslexia testing lady that told me they would'nt statement, does she not come from the LEA?

sorry for soulding thick asking this but I assumed that it was one and the same IYGWIM?

will get onto it tho if it would help. altho what would it mean if she is? would she get more help or would the school just get more funding just to do the same? how would my DD benefit from this?

[aquariusmum]

I do not know enough about dyslexia pscyhomum, maybe you should post on the other SEN thread, under topic parenting. If you write that letter, they are legally bound to come back to you and it is probably not the same lady as there is usually a whole assessment team. That said, they'll probably take advice from her so you may end up in the same place. All I know is that they fobbed me off and told me he wouldn't get a statement , but once I wrote that letter and made a very clear (and bad) case about his difficulties, they did assess my ASD son. Lots of other mums got fobbed off with early action plus, even though their kids were just as severe

[AttilaTheMeerkat]

Pyschomum

It is the LEA's statutory duty to issue a statement when it is needed - they cannot wriggle out of such responsibilitiesby quoting percentages at you and saying "well she needs to be in the bottom 2%". Such statements made are blanket policies and thus illegal in law.

IPSEA have good advice - I would speak to them also. Their web address is www.ipsea.org.uk.

There is nothing to stop you writing to the LEA asking for her to be statuorily assessed although they will likely say no. You will likely have to go to tribunal if you want a Statement for her. It is thus difficult though not totally impossible to get a Statement for dyslexia.

Would also suggest you post in the "Special Needs" forum of this website - you'll get replies that way too.

[ChristmasSendsMePsycho]

thankyou attila.....all good points to consider.

I will approach the LEA again then in the new year and start the (probably) looooooong route to statementing. I dread it in a way to be honest as I am easily set back at times and I have also got to fight for DS1, but she soooooo needs this in order to good in her GSCE's. I know that they are still 4yrs away, but when she is still at reception level in parts 4yrs is not nearly enough time to catch up enough in my mind, let alone less as it will obviously be if and when I get the statement thro.

If it has to be tho, we will pay for a tutor in special ed. to help. She has one at the moment provided thro the school but it is only for 2 terms and then we have to pay £60 for a programme to keep it going ourselves. and let's be fair, with all the family day-to-day stuff that will soon lapse even with the best intentions!.

heyho.....here goes......