Unsure what to do...(probably) dyslexic daughters - sorry, long post

[GodzillasBumcheek]

Right, where to start? I have id twin daughters, and they have shown typical dyslexic reading and spelling problems since they started school. DH is definitely dyslexic, and so are several members of his family.
Although i have pointed out the problems to the school several times over the years (they are now in Year 6), they didn't do anything about it, and now i have been told that they 'don't do testing in schools anymore'.
I have contacted the Dyslexia Institute, but their tests cost £350 and although they have hinted that i might be able to get funding, i will still have to get the dtds to Lincoln (we have no car) to do the test - which i don't even know if they need because they've never even been assessed!

The Dyslexia Institute asked for the dtds SATs results, their IEPs and a sample of free hand-writing. I asked dtd1s teacher if i could have these, and she said she'd get dtd2's off her teacher too (big apologies if you are reading this, teachers), and i got a folder home the other day containing reading and writing SATs results for dtd1, her IEP, and only the spelling/writing SATs results for dtd2. No IEP for dtd2, and none of the other SATs results. There was a heck of alot of writing samples though, for which i am quite grateful as they won't write much at home.

So now i have a choice...do i carry on the DI route, for which i have to send off these papers and hope it's adequate, and worry about getting there, let alone how to get £700 for the tests. Or can somebody suggest something else? Because time is running out and they will be in Secondary this September.

Bump...anybody?

Just a thought here, but you could just get a private EP report done. The cost would be about the same at £350, but you could look for a local one.
The other thought is, you would then get a broad view on your daughters. If you are not sure if they have dyslexia it may be worth seeing where there strengths and weeknesses lie.
My DS had a private EP report, I thought he had dyslexia, but wasn't sure and I wanted to see what the EP would say rather than me telling her what I thought.
He did turn out to have dyslexia, but I also found out lots of other things like his IQ and what type of a learner he was, it also showed the variation in his ability, he did really well on some things and really badly on others.
It may be that all of the tests at the dyslexia institute are the same ones anyway.
On the downside with regard to school, having an official DX of dyslexia didn't really magic up any extra support.
He was already getting some support and was at school action plus, the DX didn't change anything.
It does seem to depend on the school though, some are really great, others just don't seem to have the resources to make any real difference.
I would say that it is worth getting a report done, as it means that you know where they are finding things really hard and you can try and help them in those areas.
Good luck.

Our LEA assesses trhe kids in year 2 (ds2 has just been flagged for support), and has an awareness scheme going afterwards where they routinely keep an eye out through juniors. AHve you spoken to the LEA about testing?

Slightly interested in the fact that the DI just wanted the paperwork because dyslexia is more rounded in actuality- dyslexics for example often ahve memory issues and organsiational skill loss. I would have thought they'd show an interest in these as well? Am no expert on dyslexia mind you!

isgrassgreener i haven't found anything available in my area, but i wil be re-checking as now dd3 is nearly 1 i can cope with all this again. Feeling very guilty at the moment because their problems have taken a back seat while I was struggling with dd3 for a while.
I want at least a SSEN if it is needed so they get help with coursework and exams, and so my kids stop being called 'stupid', 'lazy', 'careless' etc by various people in school.

Peachy - i am worried the LEA will ignore me as the school is not involved (the kind of thing people at their school have said in the past is "but she's (dtd1) got great spatial awareness, she can't be dyslexic", and "i don't really know much about dyslexia"). Can parents get the LEA involved?
And i think the DI wanted al the SATs results to check whether there was a problem with either reading or spelling.

This is from the 'British Dyslexics' site...

"Parents commonly find themselves paying up to £350 for a private assessment and many months further on no closer to being able to resolve their child's educational needs. Furthermore, should the private assessment fail to identify the child's learning difficulty and the parent be naive enough to show the resulting report to the LEA without first getting a second opinion, the LEA may use this as grounds not to provide help or to refuse a statutory assessment, in effect the parent can unwittingly give the LEA a stick to beat them with. What is more, there is no right of appeal against anything contained within a private assessment."

This is an example of why i am hesitating pursuing the private testing route.

best advice I can give (this is from myexperience with ASD more than dyslexia though- only ben in that one a few days yet LOL), is to call the LEA yourself (parents actually have a lot more power at the LEA than schools often), and request a conversation with their SENCO or designated parent contact.

That sounds like a good idea. Do you think i could even pop in with the folder of stuff the teachers sent? The office is apparently about 10 mins walk from my house! Only just found this out on the British Dyslexia website .

Dtd1 is 2 and a half years behind in spelling, dtd2 is 1 and a half, from SATs results. I think dtd2 is worse than her results indicate though - her work is covered in corections .

One of the biggest helps it would be to (eventually) put a name to their problems is that they can tell the ignorant bullies sitting next to them in school to fork off, and know for sure that they are not stupid.

I certainly don't want to upset anyone who has gone down the private testing route for dyslexia, but my teaching colleagues are quite dismissive of them. LEA backed assessments carry much more weight.

Also Secondary schools can be much better about getting an LEA assessment. Obviously you don't want to wait until then, so the pp suggestion about going direct to the LEA is at worth investigating. But secondary schools often have devoted SEN depts - do you know anything about the secondary school your dd will go to?

We won't find out until march where they are going. It's secondary school where i will be more bothered about the effects of non-action though!

It's also really bugging me that dtd1 is in a class to helpher with spellings...but the teacher knows absolutely nothing about dyslexia

So how is he expecting to know how to improve my dd then? Especially when he called her lazy and careless and told her she rushes (although she finishes well behind the other pupils in her class) too much. And told her off, saying 'it's not good enough', because she copied words wrong when they were on the board. Errrr...hello? Short term memory problems...d'uh!

What does the SENCo say?

I certainly do not want to disparage all the excellent primaries but you do seem to have been let down here.

We pick them up in year 7 & you are right to want a proper diagnosis, as children can exhibit dyslexic type problems but not be dyslexic or have a range of learning difficulties.

We get, because of our catchment, a few m/c parents who insist their child is dyslexic who have paid for private assessment but who exhibit few of the other signs that your dd's do. They then demand action - which they are entitled to - but it's not the more intensive support an LEA assessment will get you.

I had an assessment done by the DI for my ds (then 7) about a year ago. It didn't make much difference at school because he isn't far enough behind to qualify for extra help. He does have an IEP and support for behavioural problems, but they aren't much interested in the link with dyslexia (apparently the criteria for behavioural problems is much lower than for academic ones at least in my LEA). However I have found it very useful to understand more about where he gets stuck and why, and he has since had some extra synthetic phonics tutoring which has been excellent, and really helped his confidence in figuring out the "rules" of language. You get a fairly broad report, as they do a whole battery of tests (ds really enjoyed it). However if you are after something more substantive you need to go through the LEA if you can.

I am going to go through the LEA if i can - i didn't realise i could though.

The furthest i have got towards any help with school is that when my daughters went up to Juniour school i spoke to the 'learning mentor', who told me she didn't think there was anything wrong with them (so they are now 2 years behind because the school is rubbish presumably then). One of the twins was in the Special Needs teacher's class (yes, i don't know why but only 1 teacher in the school actually seems to know anything about dyslexia) but she is the one who is furthest behind

I was told two years ago that dyslexia is not tested for in schools 'anymore' (although if they'd been tested when i first asked, it would have been available ), but they did a scotopic sensitivity test. The test was totally negative for dtd1, but dtd2 said there was a miniscule improvement with a grey overlay, which she never received, and the whole thing was brushed under the carpet.

From notification to decision to assess - 6 weeks
from decision to assess to assessments being made and a decision to make a statement or not - 10 weeks
To make a proposed statement (if necessary) - 2 weeks
From proposed statement to final statement - 8 weeks

In total the whole process should take 26 weeks.

Timescale from the department of education and skills SEN guide for parents.

Sorry it's sooooo long but I found this and copied and pasted for you.

If my child is receiving additional help through the school but does not seem to be making progress, what can I do?

The first step is to talk to the schools Special Educational Needs Co-ordinator (SENCO) to establish the type of support your child is receiving, what progress he/she has made and what steps the school plan to take to meet your child's needs. If you feel that the support your child is receiving through their school is not meeting their needs you can contact your Local Education Authority (LEA) and request a statutory assessment of Special Educational Needs (SEN). The LEA will consider all available evidence, from the school, education & health professionals and from you. If after considering the evidence the LEA decide your childs needs cannot be met solely through school based provision they may decide to issue a statement of SEN.

Download

SEN a Guide for Parents and Carers

The statement will:

set out the child's special educational needs, in terms of the child's learning difficulties which call for SEN provision, as assessed by the authority
set out the SEN provision which the LEA thinks is necessary and
name a school or type of school or other type of provision.
If the LEA decide NOT to issue a statement, or you disagree with the proposed statement, you can appeal to the SEN & Disability Tribunal, see below.

What if my child has a statement, but is not getting the support set out in the statement or the support does not meet his needs?

If your child is not getting the educational support set out in their statement you should first check with the school to see why, for example, is it a short term problem due to a staff absence/equipment broken down? If you are not satisfied with the reasons but feel the support set out is correct you should contact us directly by clicking here.

If you do not think the provision set out is meeting your child's needs you can request a reassessment of your child's SEN. If this is declined or you disagree with a proposed amended statement you can appeal to the SEN & Disability Tribunal.

What other help is available?

Each LEA must provide independent support & disagreement resolution services to help parents through what can be a very emotional and stressful time. See below for details of these services.

What is a parent partnership service?

Parent partnership services provide support and advice to parents whose children have SEN. They provide accurate and neutral information on the full range of options available to parents. They do not 'take sides'. They help parents to make informed decisions about their children's education. Where parents want an independent parental supporter, the service should provide one. You can find a list of contact phone numbers at www.parentpartnership.org.uk

What is a disagreement resolution service?

Disagreement resolution services provide an informal way of preventing or sorting out disagreements between parents (whose children have SEN) and the LEA or school (this will only include independent schools where they are named in the statement). This is an additional service parents can use if they want to. The service is designed to be a way of resolving problems quickly and informally. Using the service does not affect your right to appeal to the SEN Tribunal.

What is the Special Educational Needs Tribunal?

The Special Educational Needs Tribunal is an independent body that hears parents' appeals against LEA decisions on statutory assessments and statements.
You can appeal to the Special Educational Needs Tribunal if:

the LEA refuse to carry out a statutory assessment of your child after you have asked them to
the LEA refuse to make a statement for your child after an assessment
you disagree with the description of your child's SEN, the educational provision set out on the statement or the school or other provision named on your child's statement, (part 2, part 3 or part 4) when that statement is first made or if it is changed later
your child already has a statement, and the LEA refuse to assess your child again or to change the name of the school in that statement
the LEA decide to stop your child's statement.
The Tribunal is based in London but, outside the South East, appeals are heard locally. The Tribunal is made up of three people. One of these will be the Chairman, who will be a lawyer. The other two will have experience of SEN.

You can go to the Tribunal on your own, or voluntary organisations or parents' groups can help you prepare your case and go with you. You can also ask up to two people who know your child to speak for you at the Tribunal.

The Tribunal will look at the evidence and will make a final decision. In reaching this decision, the Tribunal may consider how the LEA's actions compare to the guidance set out in the SEN Code of Practice. Just because an LEA has not followed the Code will not always mean that their decision was wrong. But the Tribunal will expect the LEA to explain why they have not followed the Code's guidance when that is relevant to the decision they have made.

Copyright & Source: www.teachernet.gov.uk/

Thanks very much

Just one thing (i am off to feed my lo in a moment but will check back tomorrow, or in a few minutes if i get chance!) - do i contact the SENco through my daughters' school or through LEA then?

Thanks in advance for reply!

I hope I'm right, since I don't have experience of not being in a proactive SEN school.

If I've understood correctly, you speak to the named SENCo at your dd's school first expressing your dissatisfaction (I know you have said you have done this but I think you'll need to do so again, so you can then take the next step of speaking to the LEA if you get no joy from the SENCo)

The first step is to talk to the schools Special Educational Needs Co-ordinator (SENCO) to establish the type of support your child is receiving, what progress he/she has made and what steps the school plan to take to meet your child's needs. If you feel that the support your child is receiving through their school is not meeting their needs you can contact your Local Education Authority (LEA) and request a statutory assessment of Special Educational Needs (SEN)

Right, okay, ikwym. Do i really have to speak to the SENco again (i've checked on dtd1s IEP and this is the teacher i spoke to before who taught the same daughter in Year 4)?

She has admitted previously that there is a likelyhood both twins have dyslexia, but has done nothing about it (besides getting them tested for scotopic sensitivity and saying she'd follow up, but not doing). DTD2 hasn't been given an IEP this year (though she has had one other years), DTD1s IEP basically says she will carry on work with the 'Deputy Headteacher' in his little group...the man who confessed to me he knows nothing about dyslexia and was calling her careless. And the IEP was signed by the SENco. Can i get away with skipping the bit where i speak to her?

My experience of our school's SENCO was that she was utterly shite, knew very little about ds's behaviour despite labeling him autistic and was totally uninterested in his dyslexia (and like you we have it very strongly in the family). Yours sounds equally useless. The problem is that even if you get an assessment you may not find it leads to support because it's all related to the thresholds that the LEA is working to. It might be worth thinking about it the other way around. What sort of support might your girls need? My ds has classic memory and organisational problems (not much can be done on that front - he's going to have to learn to live with them) and phonological problems. I spent some time reading up about synthetic phonics (someone on mumsnet who's name I can't remember at the moment, but to whom I am most grateful) directed me to Dyslexics.org www.aowm73.dsl.pipex.com/dyslexics/index.htm and as a result of that I got in touch with a synthetic phonics tutor. The theory of this approach is that if children are taught to read properly they are much less likely to have dyslexia type deficits, and although I was very skeptical, watching ds start to learn the rules was quite a breakthrough, as his confidence really went up, and I found I could actually help him figure things out. There's an online tool recently released which you could try out www.phonicsinternational.com to see if it helped. I found it made a difference when I could actually do something to help rather than just watching him struggle. The DI assessment really just confirms things and pinpoints the problem. It may also help your dds to have someone tell them they are intelligent and talk about where they struggle. Ds wasn't so keen on knowing he had dyslexia at first (he wailed "I don't want to be dyslexie" quite a bit!). It really helped that I could get his cousins/uncles to tell him that they had it too and it wasn't so bad - especially the cousin who told him that it made him special. Now he has a new best friend who struggles even more with dyslexia I think again that helps. The other thing you might find useful, although I never succeeded on this one, is to contact your local branch of the BDA - I've given the link as it's a bit tricky to findwww.bdadyslexia.org.uk/ldas.html you may find they know how things work in your local area and can direct you to the most effective person to talk to.

Since your dds' primary haven't been as pro-active or specialised as you would like re your dds' dyslexia, if it were me, I'd still be speaking to the LEA. I am surprised at the primary's reluctance since it usually brings extra funding.

Thanks for your input nooka and heated...

I have sat down and read what was given to me from the dtds's school. I am now fuming with anger! Ok so i don't quite know what all of it means, but i do know that when they say they teach in a 'varied' way - it should mean that they aren't just coping from books/whiteboard most of the time (dds come home and complain frequently that they have done things wrong because just ciopying from the book doesn't sink in).

And the comments when their work is corrected...

"Some careless mistakes with spelling and meaning - read carefully the dictionary definitions" (along with the usual spelling mistakes she had mistaken "warily" for "wearily".) I have repeatedly told the teachers she (dtd2) has alot of difficulty using a dictionary.

As for the corrections and notes on dtd1s work (there was more of hers provided)...
"make sure you write in complete sentences"
"if you are unsure of a spelling, please look it up in the dictionary" (that was repeated quite a few times - unfortunately dd doesn't know when she's spelling something wrong!)
"copy given words correctly" (meaning she copied it wrongly off the board - she did this at least twice, spelling Embellishment differently each time)
"you have no excuses for spelling these wrong" (presumably because they were written on the blasted board)
"please speed up"
OMflippingG...no wonder she thinks she's thick

And i read a piece of the IEP that even said i'd asked about dyslexia in year 3 (actually in was in the infants school next door in year 2!), states 'NE Lincolnshire no longer tests dyslexia' (not a mention of assessment though), and mentions 'Specific Spelling Difficulties'.
Do i just live in the most rubbish area or something? They failed dh and now they're looking to do the same with my lovely dds.