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.

I have never been asked to actually discuss anything cat!
Right, so, next opportunity (i need a few hours i reckon when baby doesn't need feeding/nap because i can't think while she's crying), i need to get down to the LEA and ask for
a) the number/address for parent partnership and
b) ask for a statutory assessment of my daughters' needs.
And i shall also check out the websites you have linked to, nooka.

Thankyou all very much. I need a good prod in the right direction now and again!

Sorry this is a bit long.....
I would recommend that you get a copy of the SEN Toolkit from the department for education and skills, tel 0845 60 222 60 e-mail [email protected], this is essential if you are considering going down the statementing route.

However, I believe it is better to be forwarned, so I am going to tell you, in my experience it is not easy getting a statement. I do have one for DS2 who had AS, but it was a long difficult road getting it and at the time he was in a very difficult place. You may well be turned down when you first ask, (they say they are unwilling to assess) and you may have to keep on asking or put in your forms to go to tribunal. If you are willing to take it all of the way you may succeed.

I was initially turned down for assesment even though DS2 was on the at risk of exclusion register.

I have not gone down this road for DS1 who is dyslexic and has been at school action plus since reception (yr 5 now).

The reason that I decided to have a private assesment was he had been seen by the EP at school three time and although she said in private to the senco that she felt he was dyslexic, she would not commit this to paper, so all of the tests she did and the reports she wrote did not contain a DX. It's as if they will not give a DX for dyslexia in my borough, I know several parents in my school (we have formed a dyslexia support group) and not one of them has been given a DX of dyslexia by the LEA EP.

Where I live it is very difficult to get a statement for dyslexia, some people do manage it but only by going to tribunal it seems. I know that my LEA say that you need to be 4 years behind, although this is not legal as the SEN code of practise does not say this.

If you intend on asking the LEA to asses you will need to get all of your paperwork together, you will need all of your IEPs and you will need to show that the level of intervention that the school is providing is not working.

Quote - SEN toolkit

Strands of action to meet SEN

Progress
The key test of the need for further action is evidence that the current rate of progress is inadequate.
There should not be an assumption that all pupils will progress at the same rate.

Relating intervention to individual needs:
Decisions about which actions are appropriate for which pupils must be made on an individual basis
By a careful assessment for the pupils difficulties
and
the pupil's need for different approaches to learning
and
the school and classroom context.

With regard to your IEP you should have a meeting at least twice a year to discuss, also the IEP should aim to include SMART targets, Specific, Measurable, Achievable, Relevant, Time bound, if you don't get the chance to discuss the IEP and if it is working there is no point in having it.

The fact that the school have not been reviewing the IEP with you could work in your favour, as it shows that they do not have a rigerous proceedure in place.

I hope you don't think I am being too negitive, I just know that when I went down this road I thought it would be easy and it was not and if someone had told me at the beginning that I would be refused I would have been better prepaired, as it was I cried when they first refused me.

Also I am in an inner London borough with lots of need, so funding is tight.

I did get quite a lot of support from the parent partnership, but I think others have not always had good advice, they are run by the council so sometimes are not as impartial as you need.

I hope that this is of some help and apologise for the many spelling mistakes that this post probably contains!

Quick update...went into Department of Children's Services this afternoon (it's at the address given for the LEA) and spoke over their phone to the relevant person - who said that unless ALL possible avenues of help have been explored by the school, they are extremely unlikely to consider assessing my daughters for SSEN. She gave me the phone number for Parent Partnership but when i rang them there was no staff available to speak to and i had to leave a message. They will apparently 'get back to me'. So basically, unless they do happen to get back to me, there's beggar all i can do then.

isgrassgreener - what actually is the SEN toolkit?

The SEN Toolkit is a box of information that is available free, it includes the Special Educational Needs code of practice, which is basically the book which sets out the law that governs SEN.
The other booklets in the toolbox tell you all sorts of things like principles and policies, managing IEPs, writing statements, conducting annual reviews etc etc
You should get it, it is very useful as you can quote passages from the SEN code of practise, to both your school and the LEA
EG: you could say to your school that according to the SEN code of practice, section 5.23 "provision for a child with special educational needs should match the nature of their needs" and "there should be regular recording of a child's special educational needs, the action taken and the outcomes" so you would like to know what action the school have taken to fulfill thiswith regard to your DDs.
Obviously this is all fighting talk, and it may not be the way you want to go with your school, but it can be helpful at times to let your school/LEA know that you know what the law is.
I don't know if anyone else has mentioned this, but you should contact IPSEA, (Independant Panel For Special Education Advice) tel 0800 018 4016, they are hard to get through to but keep on trying as they are really helpful.
Good luck.

No, don't thhink that has been mentioned. Actually grassisgreener...i am in a fighting mood at the moment. Shame they'll change schools next year - might have to go through the whole thing again!

The person that you spoke to was refering to the fact that the system is meant to be a graduated approach, so the LEA will be looking at what intervention the school has already put in place and the outcome. It can be that the LEA say that the school has not done enough at school action plus and that they need to put more intervention in place to get a more positive outcome.

The theory is that the school does everything they can at SA+ and if they do not get a suitable outcome and need more funding to put more help in place then you apply for a statement.

Its all about money, the school have to provide support at school action plus out of their own budget, they also have to pay for statements under 15 hours (12 hours in some places) so if the school says that they can't afford to put more help in place, it gives you a reason to say to the LEA that you need more funding, IE a statement to get the help needed.

If however, the school has done bugger all, the LEA will say that they need to put intervention in place and prove that it is not working before they will consider a statement.

Obviously sometimes it doesn't work like that and you can be at a crisis point and lots of children start at school with a statement in place, but when issues come up once you are already in school this is how it is meant to work.

By the way incase you don't know, School action, means that the school is putting extra help in place, SA+ is the same but it means that the school will be looking to get some outside input, from others like the EP, OT SALT, then a statement means that the money is dedicated to that child and the intervention that is need is written down in the statement.

The person that you spoke to was refering to the fact that the system is meant to be a graduated approach, so the LEA will be looking at what intervention the school has already put in place and the outcome. It can be that the LEA say that the school has not done enough at school action plus and that they need to put more intervention in place to get a more positive outcome.

The theory is that the school does everything they can at SA+ and if they do not get a suitable outcome and need more funding to put more help in place then you apply for a statement.

Its all about money, the school have to provide support at school action plus out of their own budget, they also have to pay for statements under 15 hours (12 hours in some places) so if the school says that they can't afford to put more help in place, it gives you a reason to say to the LEA that you need more funding, IE a statement to get the help needed.

If however, the school has done bugger all, the LEA will say that they need to put intervention in place and prove that it is not working before they will consider a statement.

Obviously sometimes it doesn't work like that and you can be at a crisis point and lots of children start at school with a statement in place, but when issues come up once you are already in school this is how it is meant to work.

By the way incase you don't know, School action, means that the school is putting extra help in place, SA+ is the same but it means that the school will be looking to get some outside input, from others like the EP, OT SALT, then a statement means that the money is dedicated to that child and the intervention that is need is written down in the statement.

sorry didn't intend to post that twice

Ok...fair enough. Have had a mad day (okay, it was mad by my standards - probably slow for some people ).

Firstly, i rang up the Parent Partnership again (i got the feeling they weren't going to ring back), and got the relevant lady to ring back (i was in a shop at the time, it was quite awkward). Filled in forms over the phone, was quizzed very intensively over what i was wanting from their involvement and what i expected from the school. Concluded that i understand it is not necessary for dds to get statements to obtain help in school/exams, and that being 'diagnosed' dyslexic does not mean they will be automatically entitled to more.

Later, i got a phonecall from dds' headteacher saying that he advises i don't go to the DI because apparently when they go to Secondary they will be tested by SENSS (or something - omg i have an atrocious memory...i need to see things on paper to remember them), and testing now will be a waste of £350 (and then he was shocked because i told him i wanted both dtds tested!). There was more to the convo than that but won't bore you with it, suffice to say that i informed him that PP were now involved.

Then i had some bad news about a family member, and that's about it. Oh, and argued with dh. See? Busy day.

I work in a London Borough and the LA have a contact point called 'Parent Pertnership' (I know this is available in Hertfordshire too so may be nation wide). They offer a whole range of advice on what parents and their children are entitled to in terms of SEN and will offer you advice going in to school or if you want to explore the statementing route independently (ie not through the school). Ring your LA and ask them if they have that service or an equivalent.
I'm sad to read on some of the comments that many parents feel they've been let down! For the record, as a SENCo, my priority is to get as much support and be as creative as I can to support children with additional needs - as do most of my colleagues! We want to work in partnership with parents and will try to get the best out of a system is driven (beyond a school's control) by funding issues, targets and very often hidden political agendas. - I hope you have success and get the support you need. -

Well, just for the info of anyone who posted -

I went to an appointment with Parent Partnership today, and may i say; "What a total waste of my and dh's time" I can't believe i left dh full of cold and with backache to look after dd3 while i traipsed all the way there for that rubbish. Grrrrr.

Sorry about the delay cat - hope you look at this thread again at some point.

Well, was told PP would get school to go through all possible avenues of help for my DDs (as this is apparently necessary before the LEA will consider getting them assessed). Also was led to believe that the PP could explain to DD1 and 2s class teachers and where they were going wrong (telling them to look spellings up in the dictionary, or complaining about mis-spelling things copied off the board, for a start).

Was assured this would go ahead by man on phone, but i wanted to meet the person who would go with me, first, so i could make sure i had my facts right, and also that i wasn't mistaken about them showing signs of dyslexia in the first place.

So i met this very nice lady today - but she knows absolutely squod all about dyslexia. So i haven't bothered arranging the meeting with the SENCO as this woman will be no help whatsoever.

Have you tried your dds with an ACE dictionary? They work on a phonetic basis, and can be great if you have no idea what the word you are after looks like. My ds hasn't found it that useful, but my nephew who is quite a bit older says it's good (which is why we bought one). You have to work out the sounds and sylabuls in words to be able to use it, but it is a completely different approach to the normal dictionary (ds and I struggled because we couldn't agree on how many sylabuls there were in the words we were looking up!). We've also used a variety of different pens which are easier to control (there are ones where you can see what you are doing better, and ones with curves or triagular bodies) try a good branch of WHSmith and see if any appeal to your daughters (there are some pink/purple ones, which dd appropriated). Have you managed to get hold of anyone from the dyslexia association? Our local branch does evenings for parents and that sort of thing whihc might help you with ideas (not that I have gone to any, but you never know!).

Haven't tried the Dyslexia Association, but have tried the D. Institute - who basically weren't going to actually discuss anything, just charge £350 for a test.

They have tried the ACE dictionary i think...but don't think that is what they've got at school now. Thing is, they don't realise when they're spelling something wrong! Plus, their spelling is very inconsistent too.

They don't need different pens or pencils though, as their handwriting is ok.

Ok
Then I either wait and make sure they get tested on their admittance to Secondary (I have to wait until March to find out where they are going), or....

I swallow my pride and ring PP to ask for an appointment with them and the SENCO which was what we were supposed to be doing in the first place.
But I still don't see how they can advise the school if they have no idea of the problem!

Okay, the problem I see is this - my kids have been improving, so me coming in and trying to tell them they aren't doing enough may not be seen as justified.

However, their lack of understanding leads me to believe that it mostly isn't their strategies that are causing the improvements - just a general increase in age (i did read somewhere that sometimes reading can 'click' as kids get older, as it has - honestly i'm not making this up!) and them trying really hard.

It's their GCSEs in later years i'm worried about - and for now, the lack of understanding from their teachers. If they weren't being told to use the blardy dictionary every 5 minutes, or told 'you should have copied this right it was on the board'. I don't think Parent Partnership can help with this.

My ds 12 didn't really click with reading until he was 7, if he reads a book he uses a ruler to follow the words, but actually now reads well.

He does have problems with writing mainly spelling. His yr 3 teacher did say he had dyslexic traits.

He did get spelling help over the years with scemes like Wordwall and Stareway to Spelling.

His Yr 6 referred to him having a SLD but didn't think he was dyslexic, She did say he improved a lot in Yr 6. He did manage to scrape a 4 in his writing for his SATS although everything else was high 5's.
I have been told in the last few weeks that the school only gets enough funding to test 2 children a year for dyslexia

He started secondary school this September and has had to do French and German . He got upset by both subjects,because there were lots of tests. He kept saying if I can't spell in english how can I spell in French/german..
A meeting was set up with the SENCO. Turned out he was on the special need register in primary but was taken off it. She put him straight back on it. She thought he was dyslexic, going to do testing on him.
She said he will probably get a little word processor to use in school and there will be a morning club in the summer term for him to go to.

This has filtered through to his teachers and they have been really good at boosting his self esteem etc.

I have heard another boy from his primary has already been diagnosed at his new secondary school. I think a lot of secondary schools in our area seem to pick up problems like undiagnosed autism/dyslexia in Yr 7

Thanks christywhisty, that's quite hopeful then!

cat64...i will speak to the SENCo after Christmas - seeing as these last few weeks are full of plays and parties, and my head is full of pre-Christmas buzzing. Plus, apparently they won't be doing any actual classwork until after the holidays now, so i won't be able to ask my dds how things are going.