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Dyslexia support group !!!

23 replies

noushi · 31/01/2011 21:39

Hi , im currently struggling to get my dd the help she needs in school , she is dyslexic and the school isnt doing enough to help her.
I would really like to start up a group in brighton for other parents with dyslexic kids who may or may not be getting the help they need or if you think that your child maybe but has not been assessed. Alot of the schools are; for one not picking up on the signs, and two; not giving the correct support when they are reconised .

Please Please message me or comment if you have any interest in this, something needs to be done for all these kids and i am willing to take on the fight with the schools and goverment and who ever else is not pulling there weight with this subject but if we can get a group together it will certainly be an easier battle .

I look forward to hearing from you x

OP posts:
IndigoBell · 31/01/2011 21:58

Hi Noushi,

I am not in Brighton, but my DD is having massive trouble learning to read and write.

She has a label of dyslexia, but I think it is a very, very, very, unhelpful label.

Before you settle for a label of dyslexia have you checked:

That she has been taught synthetic phonics properly ( this is the most common cause of reading problems - and the help you are really asking for is yet more synthetic phonics teaching.)

Had her eye tested by a behaviour optometrist ( opticians don't test very much )

Had her hearing tested by someone like the Sound Learning Centre (Again I am flabergasted that an audiologist told me DDs hearing was fine when it wasn't)

Had her tested for auditory processing disorder ( I think can only be done at GOSH)

Had her memory tested by an EP.

Had her tested for retained reflexes.

Investigated whether she has ADD-Predominantly Inattentive.

Omega Fish Oil

Well, that's as far as I've got after 3 years of researching 'dyslexia'. But the more I research it the more I am convinced that dyslexia describes the symptoms of struggling to learn to read and write - but does not describe the cause.

I am convinced the cause has to be something like I've described above:

  • Bad teaching
  • Vision problems
  • Auditory Problems
  • Attention Problems
  • Cognitive Problems

And the only way to help our children is to keep persisting until we find the underlying problem - and fixing that.

noushi · 31/01/2011 22:29

Hi indigo, thank you for getting back to me !
My dd had hearing problems when she was 3 so it would seem thats where it stems from , she did recieve alot of help with phonics through S.A.L.T ever since she was in nursery and it is the one thing she can do . My daughter is now in yr 3 and still cant say the complete the alphabet ! she does have regular check ups for hearing tests and such like but i am having all of that re-assessed at the moment i did find a website which was rather informative www.dyslexiaonline.com/information/whatis.html its worth checking out !!

OP posts:
IndigoBell · 01/02/2011 07:28

When you say she doesn't know the alphabet, do you mean if you show her a letter she doesn't know what it is? Or if you ask her to write a letter she doesn't know how to? Or she can't recite the alphabet in order?

Not being able to recite the alphabet is neither here nor there - it is not a skill needed to read or write.

It does suggest to me she has a memory problem. There are lots of different types of memory though. Auditory, visual, working, ......

Your DD may well have an auditory memory problem which is making it hard for her to learn. This is certainly one of my DDs problems.

Daily memory games should help if you can work out what bit of her memory needs improving, and therefore what game would be the best.

'they' will tell you dyslexia can't be cured. Don't believe them. She has got to have an underlying problem which I'd making it hard for her to learn to read and write.
If she has had hearing problems, and if you can afford it, you really should get her checked out by the sound learning centre in London.

School are quite happy to label my DD with dyslexia and use that as an excuse for her learning difficulties. I am not. SLC found my DD has auditory discrimination problems, ie she can't distinguish between similar sounds, which is hindering her. We are goingto do auditory integration training with her this month which will cure that. It should also help with her slow cognitive processing.

But if I had just believed school when they said it's dyslexia and there's nothing else we can do, then she wouldn't be getting this help.

noushi · 01/02/2011 10:58

With her alphabet she 1, doesnt know what the letter is when shown 2,cant write it if i tell her a letter and also cant recite it ,its not with all letters but quite a few.
I do think some of it is down to memory but not all as when i teach her things in the dyslexia friendly way of teaching she remembers it but then when the school ask her the same things but in the normal way she cant remember.
It wasnt the school who said she was dyslexic it was me after researching it and then when the ep assessed her they confirmed it .
I am getting a full assessemnt done with the ENT specialist at the hospital to look further into itand i shall now speak with him about what you suggested also .

OP posts:
IndigoBell · 01/02/2011 11:06

What do you mean by 'dyslexia friendly way of teaching'? Do you mean multi-sensory?

IndigoBell · 01/02/2011 11:22

I'm sorry, I think I'm coming across harsher than I mean to.

I have just been through all this with my DD, and have come to the conclusions I said above.

I know what the defn of dyslexia is. I also know there isn't one agreed defn of dyslexia.

I know EPs will give out dx of dyslexia left, right and centre. I am not disputing the fact that your DD has a dx of dyslexia.

I have just found that a dx of dyslexia was not helpful for my DD. Whereas continually challenging of all of the above things (sight, hearing, etc ) is starting to (slowly) yield results.

The problem with accepting a dx of dyslexia is then you are also accepting that she will never read and write as well as others.

Dyslexia is an easy dx to give out. It costs no one any money - because there is no cure for it.

If my DD has dyslexia how come I have since found problems with her vision and her hearing that can be corrected and are improving her ability to read? Dyslexia is not cureable - so therefore she doesn't have dyslexia she has (quite a few) other underlying problems.

And I strongly suspect so does your DD.

Neither the NHS nor school cares about your DD. Only you do. So you are the one who has to get to the bottom of it...

noushi · 01/02/2011 11:23

yes mostly ! Just trying to keep her interested with it and making it fun for her also she loves art so including that wherever possible .

OP posts:
IndigoBell · 01/02/2011 11:28

I think that if she can learn via 'multi-sensory' methods but not via 'normal' methods - than it is a huge indication that one (or more) of her senses are not right.

If she has hearing problems (or hearing and vision problems) then she will learn better via 'mulit-sensory' methods, won't she?

You should not need multi-sensory methods to learn. If you do it has to be because your main senses aren't working properly.....

IndigoBell · 01/02/2011 11:31

In countries where the language is phonetic they mostly don't have dyslexia.

I think this is because when a child struggles to learn to read they don't blame dyslexia, but rather find out why the child can't read.

Whereas in English they just say 'Oh, it's dyslexia'

If dyslexia was real, there would be just as many dyslexic people regardless of what language they were learning to read and write in...

noushi · 01/02/2011 11:33

I do totally understand where you are coming from and do appreciate any input you have to offer , But i will be doing everything i can for my daughter until she is taught in a manner that she properly understands and if i have to go to hell and back to get that ( which i mostly will lol ) then so be it .
I certainly wont just stop because she has a so called label i will only stop when my girl can come home to me after school with a smile on her face instead of the floods of tears we have every night because she doesnt undrestand what is being taught and because of the other kids telling her she is stupid and the school doing nothing to help her !!

OP posts:
IndigoBell · 01/02/2011 11:44

Great, well these are all of the things I'm trying - all of which have helped a bit

  • Moving School
  • Omega Fish Oil (containing a high level of DHA)
  • Vision Therapy
  • Reflexology

We are doing Auditory Integration Training next, and once we've done that we're going to do Retained Reflex Therapy.

I think that will cure her. But if it doesn't I will then try the Dore Method, and if that doesn't work I will then try the Davies Method.....

At school my DD is currently getting an hour phonics lesson a day, taught in a small group, plus she is being read with 1:1 3xs a day...

She has had 1:1 every day since reception and also a daily phonics lesson every day. her progress is slow. (Well, actually she hasn't made any progress at all in the last year and a half)

However her confidence is high and she is happy. I have no idea why.

The day her confidence drops I am going to take her out of school.

And if I really, really can't teach her to read and write after doing all of the above therapies (plus any more I find in the mean time) I will then take her totally out of the education system and send her to Summerhill.

I will not send her to school to fail.

So, yes your school should be doing more for your DD. But no matter how much they do it won't help if she really has a hearing / vision / retained reflexes problem...

School can't access or prescribe any of the above treatments. Nor can anyone in the NHS. Only you can.

noushi · 01/02/2011 11:55

My plan is to take her out of the school because as i said they are not helping , but the only descent schools here have waiting lists which she is on , plus i have to prove the help they offered is not suitable or working so i can use this at a later date but if it things get anyworse for my girl i will teach her from home until the school is available . I will find out about her hearing on the 12th and her vision next week then i can start looking into the other therapies. But i wont be trying the fish oil as we are all vegatarian.
I wish you well for your daughter and hope she gets all the help she needs x

OP posts:
IndigoBell · 01/02/2011 12:14

If you are all vegetarian don't you think then there is a very high chance that she is deficient in DHA?

Taking her out of school (today) seems the right thing to do for your daughter at the moment if she is so unhappy.

Read the home educating board. Lots of good advice on there.

Good luck. And I wish you well too :)

noushi · 01/02/2011 13:34

Thank you but as far as her lacking in dha im pretty sure shes not lacking on anything on that side of things ive been veggie since i was old enough to understand where meat comes from and i make sure she gets all the vits and mins she needs to be a healthy and strong girl to which she is x

OP posts:
shelly321 · 09/03/2011 19:46

I have just been reading the forum where the link to this dyslexia support group was mentioned. I have written there about a great online resource for worried parents. It features a test which can be completed in as many different sittings as you wish. Your child plays 12 online games and then you get a full report on what your children are good at and also what they are not so good at. I then took this to my childs year 5 teacher and they then can help address these issues. As I mentioned before on another link, the school can also buy this test for school but it is a bit more expensive for schools. For parents its £20 and well worth it.

www.smartcatlearning.com

Hopefully I have written this in the right place this time and hopefully it will help you as much as it has me and my daughter. Good luck!

dolfrog · 09/03/2011 20:44

Some clarification.
There are two types of dyslexia, Developmental Dyslexia and Alexia (acquired dyslexia)
Most children have Developmental Dyslexia, which has a genetic origin, inherited from at least one biological parent

Dyslexia is a reading disability.
Dyslexia is about having problems with a man made communication system the visual notation of speech, or having problems decoding the graphic symbols used to represent the sounds of speech.

Dyslexia is language dependent. There are many different writing systems developed by different cultures around the world, and each writing system requires slightly different cognitive skill sets to decode the different types of graphic symbols used or the different writing system orthographies.

The purest writing systems are the logographic systems writing systems such as Chinese and Japanese, which have a single sound to single symbol relationship. And the most complex writing systems are the alphabets, such as the Latin alphabet we use.

There are many more different writing systems used in Asia, Africa and the Middle East.

Each writing system requires a slightly different cognitive skill set to decode and recode the symbols used to represent the sounds of speech. Which in turn means that there are different cognitive deficits which will cause the dyslexic symptom, of having problems decoding the graphic symbols that make up a writing system.

Next within each writing system there are the every day languages which use the writing systems symbols. English is part of the Latin Alphabet writing system, which is primarily used in Western Europe and North America.
The truest, Shallowest Orthographies, in the Latin Alphabet System are Italian and Finnish, the Deepest Orthography or most complex language is English.
S
o Dyslexia is language dependent, and the underlying cognitive deficit or information processing disorder which cause the dyslexic symptom may vary from one writing system to another.

Much of the early dyslexia research focused on the problems of the Latin Alphabet system used in Europe, at the end of the the Nineteenth Century, and English especially in the USA during the Twentieth Century. More recently there has been a great deal of research coming from China as they become more dependent on the use of the visual notation of speech as the main form of communication.

There a few isolated societies who do not have dyslexia, where they do not use a writing system as a form of communication.

There are three cognitive subtypes of dyslexia auditory, visual, and attentional. Which have been the focus of international research over the last decade or so.
So auditory processing (Listening) problems, visual processing problems, attention problems or any combination of the three are the underlying causes of the dyslexic symptom.

HelensMelons · 09/03/2011 20:49

Ok, very interested. Dd3 has processing difficulties, on IEP level 2; not likely to move to level 3 this year anyway, school certainly not pushing for Ed Psych intervention at this stage; I suspect she would fit under the dyslexia umbrella. However, Indigo, can you point me in the direction of Vision Therapy/Reflexology - what would be beneficial about reflexology for example? Do you mean the same kind of reflexology that we can get? I am interested.

What is Auditory Integration Training? I haven't heard of it - have heard of retained reflexes but have no idea what that is?

Sorry, if I am causing a 'melter' but would genuinely like to pick brains!, if that's ok!? x

dolfrog · 09/03/2011 21:07

HelensMelons

Auditory Integration Training Institute

AIT is one of the many remedial programs which may help children who have auditory processing issues, especially autistic children who have auditory processing problems.

HelensMelons · 09/03/2011 21:16

Thank you Dolfrog; I have a lot of reading to do! x

dolfrog · 09/03/2011 21:30

HelensMelons

Relexology can sometimes help with triggering a child's development when there are some communication developmental delays.
Basic human neurology which has only recently been identified by researchers over the last decade or so.

In human evolution we first used our arms and legs to communicate, and it is the same part of the brain which controls our arm and leg movements, which controls our communication processing, which is now more about processing sound based communication, or speech, and more recently using graphic symbols to represent the sounds of speech. Which is why when many are talking they also use their hands and arms to help express their meaning.
So based on this it has been found that some children who have a some forms of developmental delay can benefit from reflex or muscle stimulation to trigger their communication development.
This is not a cure for any underlying communication or information processing deficit or disorder which can cause long term communication disabilities.

There are some related research papers in my research h paper collections listed on my Communications and Neurology research paper collections web page

IndigoBell · 09/03/2011 21:34

HelensMelon - I can't explain why reflexology helped DD, but I'm certain it did. It helped her be more alert and concentrate better.

I think it's a long shot and might not help anyone else's child - but for £10 it's worth trying.... (Yes I mean the kind you get at any Chinese therapy shop)

Vision therapy is done by a Behaviour Optometrist

I went here for Auditory Integration Training. AIT has had the biggest impact on DD, and for the first time she is actually making progress with reading.

They also do retained reflexes therapy (which they call a development programme).

IndigoBell · 09/03/2011 21:38

Shelly - can you tell me more about SmartCat?

Are you associated with it?

What kind of recommendations will it make?

School already know DD has dyslexia and are doing everything they can for her. What are the chances SmartCat will tell them anything they don't know?

HelensMelons · 10/03/2011 12:39

Thanks very much Dolfrog and Indigo x

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