Does the guilt ever go away???? :(

[Becaroooo]

Just wondered.

Am feeling that I have failed my ds1 badly.

He is now - finally! - in the process of getting a dx but he is nearly 8 and I have had concerns since he was a baby and I am so angry at myself that I have allowed myself to be "fobbed off" by so called "experts", HVs, GPs and teachers for so long.

Can you get past the guilt?

Everytime I look at ds1 I feel like crying.

Dh doesnt really understand...he is still coming to terms with the fact that ds1 has SN.

Bec I have an almost daily struggle with my dh about ds2 I even convince myself I have Munchhausen's by proxy sometimes. It is very isolating and exhausting. Do you have anyone in RL who you talk to about it? There is a wonderful mum at my ds's school whose own ds (now 17) had to go through the same crap. Going to school has been made more bearable knowing she is on my side.

dolfrog Thats very interesting...I have always felt that phonics should not be the "only way" of teaching literacy, especially as I have seen kids (not just my ds1) who really struggle with phonics right from the start, but are made to plough on with it, even when its clear its not working.

So many SNs overlap, dont they? dyslexia/dyspraxia/aspergers/APD.....its very confusing!

Goblinchild

As a Wikipedia editor, i know why you should not use Wikipedia as a sole source, but due to my one dyslexic communication problems it is sometimes easier to use a quote to express what I mean, and i did so while providing a link to the research paper used to support that quote on Wikipedia, the ref is 130 if you read the Wikipedia article.

The one size fits all is a reference to the "Phonics for all" policy which discriminates against my disability, and although there are some teachers who do try to help those who are different, most unfortunately will only follow a one size fits all approach.

Unfortunately this is not speculation but my experience when trying to get the help my two eldest APD sons. Our third has had better support after a grest struggle, and he is going to a different Secondary school, which is not so focused on topping the A 'level leagues, and has more time and resourses to provide the support our youngest needs.

I think that was my point dolfrog. There is a ton of information that we are not party to. I know that the professionals that you mentioned are unlikely to have access to all the research data, but surely access enough to be able to understand that there are alternative ideas 'out there'.
I am not medically trained, but a professional in my field. I find it hard to sit and be told to 'wait and see', 'might grow out of it' 'we can deal with it later' - without being given any justification as to their point of view. Are they so out of touch with real people that they cannot explain their reasons to a layman in simple enough terms? Perhaps if they could then many of us would not feel the way that we do - fobbed off and condescended to.

lambksin I understand completely what you mean! I have sometimes wondered if I was going a bit mad wrt my concerns about ds1....as for dh - he is going to have to deal with it. I have been dealing with it since ds1 was 4 days old and I have dealt with it on my own for too long. I have made it clear to him that ds1 is getting help and if that means I have to stage a sit in at the school/GP surgery/hospital then so be it. I expect him to be with me.

Interestingly, since our GP (who my mother idolises) has said that he thinks I have "cause for concern" about ds1 and referred him she has done a complete U turn!!!! She has even offered us money to pay for some of his therapy! My PIL...well..what can I say? They are both devout christians and their attitude is "what will be will be". Not an attitude I can take wrt my son.

When we told them about the therapy, paed referral etc my MIL said
"Oh, he is just like (dh)"

sigh...no he isnt. dh didnt have difficulty learning to read and write, or use a knife and fork, or tip toe walk....." aaarrrggghhhhh!!!!!

HecateTheCrone
you wrote

I think to suggest that you can leave an autistic child locked in their own world until they are 7 or 8 years old before you start to say right, let's see what we can do here then, is laughable and I don't intend to dignify it with a moment more of my time. I certainly won't be trying to fight it out on pointless wiki.

First if you read what i have said, and that is all children develop different cognitive abilities at different ages and at different rates until the ages of 7 - 8 what is known as the age of maturation. And until that age they can grow out of some problems as part of their natural development.

There are certain types of problems including Autism which could also be a problem and which can be identified at an earlier age. But you need to be specific as to the types of problems you are encountering due to the wide range of problems included as being part of the Autistic Spectrum. (This is not helped when the world health organisations keeping on moving the goal posts)

I am not saying that there should be no interventions, but that there is a need to find out which interventions are applicable on a case by case basis. And inline with any recomendations for a specific set of problems>

Bec I'll check in in the morning again but if you want to pm me for a chat that would be great x

I am off to bed now lambskin but will PM you tomorrow x

Bec, in reality there are very few schools (indeed probably none) that only use one way of teaching to read. The reason phonics is so often banded about is because the majority of today's parents were taught using whole word and have never come across phonics.

It isn't that they are ONLY using that system, it is that that system is the ONLY one that the teachers and parents need to learn.

red At ds1s old school phonics was the only method used.

The HT thought ORT was the be all and end all.
(have you read them, btw??? soooo boring!!)

His new school use lots of different books/schemes and band them together by colour and number. (??)

ds1 prefers it because there is a good mix of non fiction in there too which he likes.

I really am off to bed now!

auntevil

It is not that difficult to find the information, if you find out where to look.
I started out as a parent with a child who had diagnosis of a disability, which non one in the UK wanted to know about back in 1998. And i have had to find the research to prove that the so called professionals where not as well informed as they made out.
So to provide you with the links to the information i mentioned above.
the Longitudinal study is the Jyväskylä Longitudinal study of Dyslexia this is my collection of the research papers resulting from and related to the study.
My PubMed Dyslexia research paper collection, which are listed by related topic, by year of publication, and my favourite Dyslexia researchers. There are many more all you have to do is to put dyslexia in the PubMed Search Engine
The one of the main research paper re the lexical and sublexical systems is Neural Representations of Visual Words and Objects: A Functional MRI Study on the Modularity of Reading and Object Processing there are more included in my "Dorsal and Ventral Streams - functional anatomy of language" research paper collection which can be located via my Communication and Neurology web page

Becaroo - ORT isn't a phonics scheme. So they were telling you they were teaching phonics, but then sending home look and say books.

Unfortunately its really not the case that if phonics doesn't work something else would. Often kids do learn to read via look and say - but the key point here is they learn to read. Whereas your DS and my DD don't learn to read. Ever. No matter how you try to teach them. If look and say worked for them they would have learnt to read despite being taught phonics.

I've spent too long blaming the school and bad teaching for DDs lack of progress. That has cost me valuable time and an awful lot of stress.

I agree that the original ORT isn't a phonics-based scheme, but they have added a lot of phonic-based readers to it now.
Most schools use a range of approaches to teach reading, my DS didn't cope well with phonics as a reading method, but learned to read because other strategies were used.

ahhh.....see? I really am clueless

I was told ORT was phonics! Ds1 certainly had some that were phonics based.

"Jolly phonics" was used in pre school which ds1 just did not get It made him very anxious and unhappy that the other children could do it and he couldnt.

In ds1's case I firmly believe some of his problems could have been helped by better teaching but, as you say indigo I can blame them til the cows come home, it wont help ds1 now.

His new school do use phonics but also look and say. ds1 has problems with both tbh as he is struggling to retain the words he learns by sight and he seems to find the blending skills that phonics requires very difficult too.

There is no easy answer is there??

Bec. Headsprout allow you to try the first 3 episode for free. Perhaps let him have a go at that?

Have done it red It was the first thing I tried after his year 1 teacher told me he was "struggling". He did quite well with the 1st 40 lessons but found the second part difficult....it was a real struggle to get him to the end of it and tbh he has forgotten a lot of it

I have also used;
Toe by toe
step by step
jolly phonics and
fun with phonics....he hated all of them and I am not sure any of them really helped.

I feel, atm, that he is working hard at school, we are doing his therapy and awaiting the com paed appt so I am backing off a bit wrt doing stuff at home.

Thanks for the suggestion though!

"Studies of abnormalities in several regions of the autistic brain suggest the disorder results from a disruption in early foetal brain development"

"Some areas of the brain have smaller neurons with stunted nerve fibres which may interfere with nerve signalling".These are the frontal lobe; planning/problem solving/understanding other?s behaviour/impulse control , limbic system (including amygdala and hippocampus); reading and regulating emotions/recalling recent experiences and new information (Experiments show removal of amygdala and hippocampus results in autistic behaviour in animals) cerebellum; motor coordination/balance/process shift from visual and auditory stimuli, parietal areas; hearing, speech and language, and corpus callosum; passes information from one side of brain to the other.
(Marshall F., 2004 "Living with Autism")

There is no question that early intervention and 're-wiring' of neurological pathways is essential for the improvement in outcomes for children on the autistic spectrum!

Autistics don't get better - they adopt coping strategies - the earlier the process begins the better.

I would argue there are not different types of autism but different effects depending on the level of neurological impairment to specific regions of the brain.

Thats interesting nelleh

My ds1 has neurological development delay.

The NDD therpsit told me that ds1 is very bright as he has developed his own "coping" strategies to enable him to learn to ride a bike for example, or swim.