Dyslexia - bottom 1%

[Anthea1001]

Hi, Just wondering if anyone else has a child diagnosed with being in the bottom 1% with Dyslexia? My 8 year old son is not progressing at at all with reading and writing, am I wasting his time? will he never be able to read anyway? Appreciate hearing from anyone who has similar experience.

Hi - my son is 7yrs 9mths and in year 3. He was diagnosed with severe dyslexia last year, but I've known things weren't right since he was around 3. He is around a NC level 1b for reading, writing and maths but average at everything else (except sport, which he is above average at!).

My life seems to revolve around trying to co-ordinate a support package for him in school and working through synthetic phonics reading programmes with him at home.

In a nutshell, it just seems as if he has no 'natural' reading ability at all. It has never just 'clicked' and I don't think it will. He has to learn, learn and learn again every single little detail of reading. It will take a long time and lots of very hard work, but I believe (I have to believe!) that he will eventually be able to read at least enough to 'get by'!!

You could try posting here: www.beingdyslexic.co.uk

My son has milder dyslexia with phonological processing on the 6th percentile which I know is very very different from having it severely. I have had lots of help from the aforementioned website.

These messages are all sounding familiar - especially the not clicking bit - my DD appears to be the same at 7yrs 11mths - there just doesn't seem to be any natural ability there at all. I love books so started her early on reading so we have been going at it at home now for 3 yrs. I have been reading together with her one to one tons - ok maybe not so much over this past holiday, but still. Think I may go and get her tested. She has only peripheral vision in one of her eyes (retinal scarring) so think there may be a link there having read the previous post on optometrists. Strange thing is her handwriting is pretty good and she can certainly copy text from books - in fact she loves to do that, just hates the reading part!

Hi

My son is 11 years old and has just recieved a diagnosis of profound dyslexia his working memory is 0.3% percentile and all other scores are below 1% percentile including processing, phonological awarness, writing etc etc. Although his verbal I.Q is 100 which is average for his age. My son is able to remember interesting facts from documenteries for short periods and sometimes longer. But when it comes to reading and writing, numeracy, time, sequencing etc etc. This is where his frustration hits an all time high and you can see the real problems lie. We have got our LEA to agree to access our son for a statement of special eduactional needs. However they are not proving easy to work with and although they have plenty of hard evidence they do not truly understand him. I have always known my son was special and different but school did not aknowledge there was an issue at all. I fought for years before withdrawing him to home educate and get him diagnosed.

All i can say is hang in there, do plenty of research, get in touch with as many proffesionals as you can to better understand and know how to proceed and get the right support for you child. Never be afraid to ask and never give up.

kathy

Kathy
I don't know if you will see this as so much time has passed
Was SO interested to see your post as I have trawled the net and never found anyone remotely like my 12 year old son, what he has doesn't seem to be dyslexia, more like 'word blindness' it is so severe.
I am considering taking him out of school to home educate, we can not get a statement (Notts CC. policy means they do not statement children anymore) he is below the 1st centile but above the 75th centile for IQ according to the private ed psych report we had when he was six) and there is minimal improvement since then, the school are refusing to have another report done so we can see where we are, ( and won't let us pay) we are so fed up, can see him getting more and more despondent and miserable, but both scared of home educating... he even more worried than us despite his misery! Any advice would be SO appreciated

Plugugly I Just wanted to pass on, you are correct that Notts CC don't 'statement' as this has been replaced by Education, Health and Care Plans ( EHCP) countrywide do although statements no longer exist they haven't 'gone' just replaced. You can request an assessment yourself directly. Look online and plenty of templates for letters to ise and advise how to do it. Good luck.

Hi, contact your local Independent Support service you can find them here councilfordisabledchildren.org.uk/independent-support
they will be able to help you make a Parental request for an Educatio, Health and Care Plan (EHCP).

Never give up! Take a look at my blog on what I have found to work.
loopygoosedarling.wordpress.com

Plugplay - as another has said now EHCP rather than statement. My son is 11 and placed at a specialist independent school funded by LA for very severe dyslexia. The only thing I would say is our LA does not ever use the word "dyslexia" there have to be several very weak areas on the ed psyc report to qualify for the EHCP rather than just " dyslexia" so things such as processing, spelling, decoding etc that are all part of what we recognise as dyslexia need to be broken down individually in order to get the support. It's all a tiring and stressful "game" (or battle should I say!)

Meant to say also, school can not "refuse" to let you pay!!!!! You won't get funding for home education unless you can prove to your authority that there are no suitable schools to meet your child's needs. You can apply to your local authority yourself for assessment (with or without your schools blessing) or you could, as we did, pay private first and get a more detailed report and specific advice from the ed psyc on suitable placements and then make the paperwork "fit". You have to be prepared to never take no for an answer and its a learning curve to find that not everyone has you or your child's interests at heart - you are your child's only advocate.