Help - Dyslexia

[fraggle500]

Dyslexia, Help!!

My son age 10 has just been diagnosed with dyslexia, sorry NOT dyslexia " -"Learning difficulties associated with dyslexic tendencies".

Why can't they call it dyslexia and where do we go from here? My son has a psychical disability as well, and we have been turned down for DLA and the LA refuse to statement him.

Feel like I am just constantly fighting, just to get him the help he should have, to enable him a decent quality of life. It's so unfair for him, makes me so sad.

Sorry just wanted to rant.

fraggle500

Sounds like the diagnostic professionals have little understanding of what dyslexia is.
Dyslexia is a man made problem about having problems decoding and recoding the visual notation of speech, or the graphic symbols society chooses to represent the sounds of speech.
There are two types of Dyslexia, Acquired Dyslexia, and Developmental Dyslexia.
Most children have developmental dyslexia which has three cognitive subtypes: auditory, visual, and attentional. Which means that an auditory processing disorder, a visual processing disorder, an attention disorder, or any combination of the three can cause the dyslexic symptom.

So you really need to identify the underlying cognitive cause of your DSs dyslexic symptom, as these disabilities tend to have more severe symptoms than just the dyslexic symptom

Is he on SA or SA+?

Has he been seen by a SALT, OT and EP?

Fraggle - We've discussed dyslexia many, many times on MN. Mostly on the primary Ed board. If you do an advanced search you'll come up with lots of advice.

This is my Dyslexia Advice

Good luck. You have a long hard road ahead of you, and you'll need lots of fight in you.

But my main advice is:

• Don't view dyslexia is an educational problem - it's a medical problem
• Don't blame school or expect them to be able to help
• Work out how to help him yourself - it's possible.

Everything that indigo said!!

A correction
Dyslexia is not a medical condition.
Dyslexia is a man made problem, about having problems with a ma made communication system. In societies that do not use the visual notation of speech as a form of communication there is no dyslexia
However the underlying cognitive causes of the dyslexic symptom do exist.

So you are looking to identify an auditory processing disorder, a visual processing disorder, attention disorder or any combination of the three, which can cause the dyslexic SYMPTOM. These are clinically diagnosable medical conditions which have many different symptoms, but sharing the dyslexic symptom

You son has been diagnosed with "Learning difficulties associated with dyslexic tendencies" probably because he has not been diagnosed. He has just scored at this level on some test. You could push for a properly qualified individual to diagnose him (an Educational Psychologist or a specially qualified teacher).
The key things I would suggest are: you consider what areas he has difficulty with, and how he can be helped. You start to keep a notebook recording things you ask school and things they promise, say they will do.
I would go and talk to the school about what areas of difficulty he has, and what they are going to do about it. You could request he has an IEP, and then make sure it is regularly reviewed with you, and has specific measurable objectives, to which progress can be shown each time it is reviewed.
You may also want hearing and eyesight tests which go beyond the standard ones.

Thank you all so much for your words of wisdom,

I have made notes of all the above advice and have an appointment with the school on Thursday, following an EP assessment today .

He does have an IEP, which I have refused to sign this year, as I felt that when a diagnosis was made (if at all), it should be made more relevant to my sons needs.

Becaroooo,

Sorry not sure what SA,SA+, or SALT stand for.

Mummytime,

He is under the hospital for his hearing, slight hearing loss, which I know can cause problems. Eyes are fine!

Dolfrog,

How would I go about finding out which type he has?

Again Many thanks.

Ok, sorry....if your son has an IEP and they have called in an EP then he is on SA+ = school action plus.

Basically its like School action but with outside agencies involved like EPs, OTs (occupational therapists) and SALTS (speech and language therapists)

Indigo's website is great and details all the therapies/stratagies she (and I) have found useful/helpful.

x

fraggle500

In an ideal world dyslexia should be assessed by a multi -discipline team consisting of an audiologist, an optometrist, a psychiatrist, who would be able to assess which of the possible underlying cognitive deficits / disabilities are causing the dyslexic symptom. And they would then be able to make to correct further referrals for further assessment and diagnosis of the precise disabilities each dyslexic may have.
Unfortunately we have a system by which a dyslexia assessment is purely an educational measure of reading ability performance, carried out by an Educational Psychologist, or various individuals who have the dubious BDA qualification. None of whom are qualified to assess and diagnose the underlying medical causes of dyslexia. Purely in it to make money out of those who may have dyslexia, to extend their careers and protect their income source.
GPs should be aware of the medical issues which can cause the dyslexic symptom, emphasis on the word should. And they should be able to provide a referral to the specific consultants who are able to diagnose , an auditory processing disorder, or the various visual processing disorders, or an attention disorder. It may be preferable if your GP is not that well informed to ask to referred to a Consultant Pediatrician, who again should be able to identify the specific problem areas, and suggest the best referral options for each potential dyslexic.
There is a great lack of joined up thinking between the various professions, and many do not bother to keep pace with research developments from after the date they qualified, which given the rapid pace of recent research developments of the recent decade or so means that so many UK medical and educational professionals verge on being incompetent because thye are so far behind the current understanding of so many issues related to their daily professional work.

So try your GP to try to identify the real underlying problems, and try to avoid some of the so called remedial programs most of which are not based on any understanding of the underlying medical issues. All very hit and miss, or sometimes they may help, but more than likely little or no long term help at all.

dolfrog Whilst I agree that that would indeed be best practise the reality is that paeds are just not interested in dyslexia and always refer back to the school. Then the school say they are doing everything they can to help - which they arent because they cant! - and you get nowhere

My son is severely dyslexic - my feeling is that its a combination of auditory and processing issues in his case - and the only things that have helped him are RRT and AIT. Whether you agree that they are helpful or doubt their efficacy is, frankly, irrelevant!

He is also doing Apples and Pears at home with me which is also helping him. (this is the best programme I have tried btw!)

In the face of complete disinterest/downright hostility from the NHS and the school I am doing the best I can for my son with the therapies/dyslexia programmes I can access.

I am not sure it is helpful to point out what should be happening wrt dyslexia dx and interventions when the reality is so different for the majority of us trying to deal with it/help our dc.

Becaroooo

This is about lobbying for change so that those who run the support systems and diagnostic services get their acts together so that we can improve the system so that our children get correct diagnosis, so that we can understand the full nature of the problem or problems so that they can get the help they need.
Alternative therapies can provide some support for some, but these therapies are not based on a full understanding of the full nature of the problems, and can sometimes do more harm then good in the longer term. So it is not about whether I, personally like them or not, more about having best advice regarding the nature of the problem, and proper scientific research as to how these alternative therapies can help or hinder the problems each child or adult may be experiencing. Many of these therapies have be around for decades, but they still have not succeeded in the required Randomised trials, and the research done by the creators and providers is not sufficient, as they tend to skew the research.
So if you want to help both your DCs and the DCs of others you need to start campaigning and lobbying your local politicians, Civil Servants, LEA managers, etc who decide the various budgets for research and support provision.
It really depends on whether you take a personal short term view or the wider overall long term view.

Well, I love a good lobby as well as the next person but IME it makes little difference

I have voted with my feet - removed my son from a terrible school.

I have reported said school to the LEA, to no effect.

I have home schooled for a year.

I have fought his current school for the right provision for him, to no effect.

I have complained about the NHS paed we saw, to no effect.

And you know what? After 3.5 years, I am tired of it.

I will sign petitions, drop leaflets, give advice when and if I can on MN but other than that I have - reluctantly - come the conclusion that nothing I do will make a difference to the "larger picture" as you put it, and I need to concentrate on my son.

Becaroooo

All done on a personal level, not being critical, but i am taking about creating a lobby group with other parents, and having your lobby group make contact with other lobby groups, and even finding out what other lobby groups are doing, and why, as some other lobby groups may not serve your lobby groups best interest.

This actions you have listed are all single personal actions which tend to have little or no influence, and are too easily dismissed by those who have the power to influence change.

I do know exactly what you mean in your last paragraph, and that is precisely why there is very little change, we have the same problem trying to get volunteers to help us with the day today running of APDUK. No one has the time, except two of us, who have achieve quite a bit for APD recognition over the last decade. So if you want ot get the support and help we all need then you have to take time out to set up, help out, help administer your own local lobby group.
I know it takes time, i have spent untold hours trying to improve these issues while looking after my APD sons and my wifes APD and my APD. It is about having the commitment to want to make a change, othewise no or very little change will happen.

Too many want the right support services but too few are willing to take the time out to fight with others to get them.

The biggest problem is the genetic nature of developmental dyslexia and all of the many other issues discussed on here.
The parents are very unwilling to admit that they share these problems or the family history of this types of issues, as they would then not appear to be NT, and make a little sense of all the effort they put in to hiding their own deficits or differences.