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dsylexia and schools response

(28 Posts)
mumslife Tue 20-Sep-11 21:29:51

Message withdrawn at poster's request.

dolfrog Tue 20-Sep-11 22:26:13

Dyslexia is a man made problem, about having problems with a man made communication system the visual notation of speech, or the graphic symbols society chooses to represent the sounds of speech.
Developmental Dyslexia has three cognitive subtypes auditory, visual and attentional. So an auditory processing disorder (listening disability) a visual processing disorder, an attention disorder, or any combination of the three can cause the dyslexic symptom. It may be better to try to indentify the underlying issues which are causing the dyslexic symptom.
Remembering homework and poor self organisations abilities are working memory issues which can be influenced by having to run coping strategies to work around one or more of the underlying cognitive issues which can cause developmental dyslexia

IndigoBell Wed 21-Sep-11 10:16:07

The school is doing exactly what they should be doing. Toe by toe every day, counts as very good support. And they are doing that without a dx.

What else would you like school to do?

There isn't much else school can do, but there's a lot else you can do.

Here are my suggestions: http://www.dyslexiaadvice.co.uk/

Personally I wouldn't spend £500 on an EP report, I'd spend £500 on therapy to help him with his problems. But an awful lot of people disagree with me.

rebl Wed 21-Sep-11 11:20:01

I'm with dolfrog and indigobell on this. I was diagnosed dyslexic late in my education. But that label in itself doesn't, and hasn't, helped. What did help though was the in depth evaluation the EP did. My report clearly states that I have an auditory and visual processing disorder. It also says that my working memory is poor. It then goes on to list all the things that might help me. With this in hand I've then got help with all the things that I struggle with and have good strategies now in place to help in study, work place and general everyday life.

IndigoBell Wed 21-Sep-11 11:22:36

rebl - what did it suggest wrt working memory problems?

rebl Wed 21-Sep-11 11:37:15

Lists and visual aids mainly. Says that I would benefit from a structured routine as well. We're talking 20 years ago now. In reality now a days I have a dh who supports me well. The times I struggle are in meetings and dealing with ds doctors and professionals. I can't retain the information given in a meeting / appointment to then bring it up into an arguement for or against something 2 mins later or to ask questions. I think this is why I'm not getting the right help for ds tbh.

In day to day life DH is very good and supportive and basically remembers everything and drip feeds the important stuff back to me. He just can't come to everything for ds. DH answers the phone all the time when he's home so that he filters out any professionals and deal with them.

mumslife Wed 21-Sep-11 12:37:14

Message withdrawn at poster's request.

mumslife Wed 21-Sep-11 12:37:45

Message withdrawn at poster's request.

rebl Wed 21-Sep-11 13:00:58

Forgot, I used to use a dictaphone when I was at uni studying so that I could go back over all the lectures. I didn't have the social life that others had, I couldn't if I wanted to get the grades I knew I could get because I didn't have time. One thing I have got is good concentration and staying power and I use my strengths in these areas to compensate for my weaknesses. I'm definatly slower at alot of things in life compared to other, I definatly have to put in 100 times more time than others but I have a good degree and a PhD as well so its possible with the right help and support. I couldn't manage half as well without my computer or my dh though.

nickminiink Wed 21-Sep-11 13:11:23

rebl, what you have written sounds just like my son. He is 10 and we have just been told he is Dyslexic along with his other learning difficulties such as speech delay. I am not sure how to feel about this yet as the dyselxia could have been missed becuase of his speech and language problems, but we have been told from the start he has poor working memory, sentence recall, auditory processing. We have after months of fighting, appointments, assessments now got a referal to GOSH to their APD clinic and now we are awiating for the official appointment. I am hoping this will help (strategies etc) our son more with his poor memory, struggles remembering homework always forgets to bring it home, despite constant reminders from us (you would think his school would help, we have mentioned it many times). How did school help you as I feel they say what I want to hear but do not implement or apply the recommendations from the professionals who have assessed my son. It's also difficult as when I ask my son if he gets additional help (other than 2 x 10mins 1:1 per week) within the classroom he's confused at the question and always answers no. Sorry for rambling I feel we are closer to understanding my son's difficulties (ASD ruled out) but struggle how to help him.
Thanks for reading

Becaroooo Wed 21-Sep-11 13:16:35

OP

Agree with Dolfrog and indigo.

Google AIT and retained reflexes

Good luck

Jakadaal Wed 21-Sep-11 19:52:35

We had a similar problem with our daughter 2 years ago and decided to go for assessment with Dyslexia Action. It is the best thing we have ever done and the assessment highlighted a number of issues that school had 'flagged' and I had suspected - dyslexia, ADHD and a brain injury from when she was a baby (she is adopted). The outcome is that my daughter now has weekly classes with DA which we pay for but which is bringing great results. We had also had her assessed by CAMHS and she is getting the appropriate support for her numerous learning difficulties. The ironic thing is that the day before we went for the assessment the Ed Psych sat in front of us and told us that our child definitely did not have dyslexia and that we were wasting our money. As we sat in front of the same Ed Psych today discussing a statement for our daughter we got the impression that he was eating his words ....

Don't stop pushing at school - there is an emphasis on teachers being trained in identifying dyslexia and actually doing something about it.

Good luck!

plumtart Wed 21-Sep-11 20:26:11

hi, mumslife, whilst I absolutely understand what indigo and dolfrog are talking about, as a parent who has recently been in your place I can imagine that it may not feel too helpful for you right now? If you can afford it then I would recommed that you have your child assessed privately.

It is human nature that once someone "tells you" that your child has "dyslexia" you will be able to process that and start thinking of ways to move forward, including all the other suggestions on this thread.

But right now maybe you feel liuke you dont know what direction to tuen in and how could you guess on what you should spend your money to help your ds if you dont have an assessment?

If it isnt going to make any difference to support levels at school, so it is therefore for your benefit only, then I would consider having a less costly assessment maybe £300 or so?

IndigoBell Thu 22-Sep-11 09:26:06

Mumslife - sorry if I came across harsh.

You know your DS has dyslexia. You don't need to pay someone £500 to tell you that. Dyslexia means you have problems with reading and or spelling despite being adequately taught. Therefore your DS has it.

There is so much you can do to help, as I listed on my website. And almost nothing school can do. But it does cost money. So spend your money on this instead

PlumTart has had huge success with vision therapy.
I've had huge success with auditory integration training
Sphyl has had huge success with retained reflex therapy.
I can't remember who, but someone else has had huge success with the Davies method
I've just started the GAPS diet, and are so far very pleased with the results.

So don't sit round working out what school should do. Decide what therapy you want to try, and try it.

There's every reason to believe that your DSs Dyslexia is a 100% curable. But you have to work and work at it.

dolfrog Thu 22-Sep-11 16:21:03

Mumslife

Unfortunately there is no cure of the underlying cognitive causes of dyslexia.

There are many programs which can provide some basic coping strategies, which may match the coping strategies your DS is able to develop and use.
Developmental Dyslexia is a life long issue and only genetic engineering can provide any cure. There are many so called programs which claim to be provide a cure, and can provide a short term benefit, but they can also conflict with your DSs natural coping mechanisms. You have to cut through the marketing hype to work out if each program may provide any support at all, and i have known many parents who have followed the advice of other well meaning parents and spent over £2000 and more on a program for their DC for which their DC has gained no benefit what so ever.

So money does not always buy what you might want, and these programs can lead to more problems if not used under best medical advice and supervision.

dolfrog Thu 22-Sep-11 16:43:00

I keep on forgetting about this research paper collection, Dyslexia and Remediation which is one of my many online PubMed Dyslexia research paper collections

IndigoBell Thu 22-Sep-11 17:14:15

Unfortunately there is no cure of the underlying cognitive causes of dyslexia.

You can not say that. No one can ever say that.

The most one could claim is that a cure has not been found yet that works for everyone.

Or in your case, that you have not yet found a scientific peer reviewed paper claiming a cure for dyslexia.

Which is not the same thing at all.

Dyslexia can be cured.

dolfrog Thu 22-Sep-11 20:21:29

There are no cures for dyslexia, which is why there is considerable ongoing research to identify the underlying cognitive causes, involved in the task of reading many of which still require a full understanding.

The only people who make bogus claims for a cure are those selling and marketing programs which have continually failed to demonstrate any long term curative properties.

So this is more about you promoting your own web site and increasing the sales of the programs you think may help.

if you could provide scientific evidence acknowledged by international peer reviewed research that any of these programs have demonstrated that they are a recognised cure then there would be some substance to your claims.

All you can claim is that some of these programs can provide some help for some who have these types of problems.
If you have scientific proof of a cure as I have said before the Medical Research Council and others would love to hear about them and save them a fortune in research costs, time and effort.

So provide the scientific support for your claims and then you can claim a cure.

IndigoBell Thu 22-Sep-11 20:38:48

No, this is not about me trying to promote any sales.

I have a very well paid career in IT. (Very well paid). And have absolute nothing to benefit from promoting any dyslexia cures.

It's about me believing the evidence I see with my own eyes, and other anecdotal evidence I've seen and read about.

It's about me being sickened by the whole NHS and the way so many children and adults, like you and your family, are being failed.

It's about me trying to help other people so that they don't settle for compensating strategies when they could have a cure.

It's about me trying to help other people so they don't suffer their whole life.

I have almost totally cured DS and have halfway cured DD. So how you can tell me there is no cure I don't know.

I have been very open about what therapies I have done with DS and DD. You haven't tried any of the therapies that I have done. So you don't even know if they'd help you and your family or not.

You don't want to try them. That's fine. But stop telling me they don't work. When they are working. For both DS and DD.

Everyone has to make their own mind up about what they want to do.

I have absolutely no interest in providing scientific claims. It's not something I can do. I work in IT, not in academic or scientific research.

I believe in 'working within my sphere of influence'. I can't influence the NHS, nor can I influence the LEA, nor can I create scientific studies. What I can do is inform people who read this site about what has worked for my DS and DD.

And that is all I can do.

IndigoBell Thu 22-Sep-11 20:43:58

All you can claim is that some of these programs can provide some help for some who have these types of problems.

Which is a bloody good start.

That is exactly what I am claiming. That some therapies cure or help some people.

So if you want to do something about your dyslexia - do.

Only if you have tried every therapy on the market, and they have all failed, can you say that the cure for your dyslexia has not been discovered yet.

Otherwise, you really can't tell.

You can sit round and wait for some professional to tell you what to do, or you can just get started, and try stuff that might work.

plumtart Thu 22-Sep-11 20:53:00

op - indigo has a point. if YOU feel that you can move forward and invest in some possible solutions for your ds WITHOUT an assessment then go ahead asap and save your money as these things can be costly.

If on the other hand you feel unable to choose or try any kind of possible "solution" without an assessment, then obiously you need to either find a way to get certain about your sons condition, or invest in an assessment so you can clear the tables and move on.

School have made it clear that they cant do anything more, but you probably can.

Please also get this book www.amazon.co.uk/Dyslexia-Parents-Survival-Christine-Ostler/dp/1869866134/ref=sr_1_1?s=books&ie=UTF8&qid=1316721064&sr=1-1 as soon as you can. It is a simple and friendly book about parenting a dyslexic child. You will probably enjoy a lot of "ahaa" moments and it might give you the confidence to give the assessment a miss.

IndigoBell Thu 22-Sep-11 21:00:40

I think this is the best book about what treatments and therapies exist and work for dyslexia:

Children with Dyslexia

dolfrog Thu 22-Sep-11 21:09:32

IndigoBell

"You don't want to try them. That's fine. But stop telling me they don't work. When they are working. For both DS and DD."

I have tried various so called miracle cures in the past. Some may have provided some support for me or others but that is all they can provide.

The problem is that you do not state the exact clinical diagnosis your children have, and for which specific clinically diagnosed conditions your children have been cured.
And from your comments last Friday one of the so called cures was no longer working. A cure means that you have a permanently corrected a medically diagnosed condition.

"It's about me believing the evidence I see with my own eyes, and other anecdotal evidence I've seen and read about."

anecdotal evidence is what snake oil sales are all about not based on repeatable scientific investigations, and as such do not work for all.

I too share your frustrations of medical science not being able to provide all the answers we require and need to explain all of the differences we may have, and the lack of scientific technology to understand the problems and find real solutions.

As i have said before take your observations to the medical researchers and stop making unsubstantiated claims based on anecdotal evidence, the stuff of myths.

They may work for your children and that is all you can say, and you need to have substantial scientific medical support before you can begin to use the word cure.

I would love to claim how I helped our sons was the cure for APD, but that is purely anecdotal evidence and not scientifically tested, so i can only suggest that it may help others, and that is all you can do.

" have almost totally cured DS and have halfway cured DD. So how you can tell me there is no cure I don't know."

So what is the clinical diagnosis of the problems your DS and DD, at what age where they clinically diagnosed, and what exactly have you cured. and what further clinical assessment has been made to support a cure for the previously diagnosed disabilities.

plumtart Thu 22-Sep-11 21:22:59

errmm, i wonder if this thread is still proving helpful to the op???

dolfrog Thu 22-Sep-11 21:30:49

IndigoBell

"Everyone has to make their own mind up about what they want to do."

very true but you are making miss leading claims of a cure.

"I have absolutely no interest in providing scientific claims. It's not something I can do. I work in IT, not in academic or scientific research.

I believe in 'working within my sphere of influence'. I can't influence the NHS, nor can I influence the LEA, nor can I create scientific studies. What I can do is inform people who read this site about what has worked for my DS and DD."

In which case you are in no position to make statements about cures for issues of which you do not have a full understanding. If you really want to affect change then you will have to influence the scientific medical researchers. As that is the only way you can begin to make any claims of a cure. Very long winded and requiring years of research and funding, so may be you would be best trying to find the funding for the research to support your claims of a cure.

Because regardless of how well intentioned you are and want to help others you are going down the route marketing hype to help promote unproven products, which may provide some help for some, but could actually damage or harm others, and which are not classified as a cure.

"What I can do is inform people who read this site about what has worked for my DS and DD."

Which is fine but you have to state each time what the precisely clinically diagnosed problem was at outset, and what the clinically difference was after using the program and how long any improvement lasted over a substantial number of years.

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