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Advice on dyslexia please

(18 Posts)
Nornironmum Mon 29-Oct-12 18:41:00

My almost 6 year old year two son has been showing signs of dyslexia from he was a toddler. I am have mild dyslexia and my older brother has severe dyslexia with mild dyspraxia so as a family we have always been aware of the signs.
Ds walked at 10 months and spoke in sentences from 1 year and has everyone who meets him including teachers comment on how bright and well spoken he is. He is a confident creative child, but always struggles with basic things like putting on shoes, using a knife and fork or holding a pencil. I took him to the doctor when he was 3 and was told he was far to young and to wait and see, which I did. Last year he did well in school with social skills and his memory is fantastic so he learnt to read from memory just could not grasp phonetics, really struggled with writing and in fact still can't write his name with surname.
This year his teacher who is fab, said he is very behind the rest of the class and his writing no matter how much we practice, and we do everyday is still no where near readable. She said if everything was vocal ds would fly through but reading and writing and also his maths are very behind. He reads well but only if the books has been read to him before, he can memorize a 20 page book but with a new book even stage one he really struggles. His co-ordination is also not great he is very accident prone and trips over his own feet a lot, he comes home from school everyday without a lunch box or school bag or coat, his teacher is also very sure he has dyslexia.
Because he is so young we are paying for a private assessment this Thursday costing £500 with an EP. The school will not do this for at least another 3 years. We are happy to go this anyhow and I believe the earlier we know the better and can get him the right sort of help.
I'm just wondering what next? What do we do when we get the diagnosis? What can I do to help him? What can the school do, they are very supportive and said they will implement the report. Also wondering what I tell him? He will be getting a 3 hour assesment, do I need to tell him why? And how do I explain it to him I don't want him to feel different? He already knows he is struggling and is always asking why he can't do things the others in his class can, I just don't know what to say for the best.
I'm sorry this is so long and please excuse spelling mistakes as I'm on my phone.

lorisparkle Mon 29-Oct-12 21:19:43

I'm afraid I offer no advice. We are currently waiting for a specialist teacher to assess DS1 as we are concerned about dyslexia / dyspraxia. We took him to the GP who said that he will refer him to a Community Peadiatrician if we have no luck with the specialist teacher at school. I downloaded a huge documentation called 'Identifying and Teaching Children and Young People with Dyslexia and Literacy Difficulties' written by Sir Jim Rose in 2009. I found this useful for outlining what the schools shoud be doing. DS1 has a speech disorder so was already on the SEN register. He gets individual support for reading, writing, speech and social skills during the week. We are still very concerned so will be interested how you EP assessment goes.

Sorry no answers!

Delalakis Mon 29-Oct-12 21:23:20

Dyslexic children tend to need a very structured approach. We decided to spend the money on a specialist tutor for our son, and initially he went to see her twice a week so that she could reinforce what she was teaching him. It was money well spent, particularly as she not only helped with his reading and spelling but also boosted his confidence.

Nornironmum Mon 29-Oct-12 21:41:45

Thanks to you both. I think I will get a tutor it's very expensive £35 per hour but I will up my working hours to pay for it as it seems the methods in school are not working for him. Speaking to him you would swear he is a genius he is so deep and intutavie, but I can tell already its affecting his confidence. He told me tonight he wasn't smart because he makes so many mistakes in his work book. I put him into drama and he loves it so hopefully this will help build his confidence back up. He is such a wonderful loving child, I'm a little sad it's going to be difficult for him In school etc so I just want to make sure I'm doing all the right things.

BigBoobiedBertha Mon 29-Oct-12 21:56:20

Apart from the social skills, he sounds a lot like my DS at 5 or 6 and he isn't dyslexic at all, he has DCD, the main symptom of which is dyspraxia. I don't think he learnt to read phonetically at all, he learnt by memorising the words but like your DS he has a great memory and once we rote learnt the key words it seemed to be enough and he was away - he really really struggled the first 1.5 years of school though.

Even with reading sussed, struggled with writing -he couldn't write his name and surname as we saddled the poor chap with a very long first and surname and his Yr 2 teacher said he didn't have to bother trying to write his surname as it just took so long! He is 12 now and has a reading and spelling age or somebody 4 years older so despite not learning to read by the usual route he has managed perfectly well. However, his written work is very scruffy and difficult to read, he cannot lay anything out properly and he makes the most stupid grammatical errors which he knows are wrong if you were to ask him the rules but he just can't see in his work - things like putting capital letters randomly throughout his work and never using a full stop or comma.

That isn't to say that your DS doesn't have dyslexia, but he may not. My boys' infants school only screeens for dyslexia, it doesn't do the tests there because it isn't ususal for children of that age not to be able to read for many other reasons. Hopefully, given that your DS is obviously a bright boy that won't be an issue when he sees the EP and they will feel able to diagnose now.

If you suspect dyspraxia the EP won't be able to help you. They aren't qualified to give a diagnosis for that, you really need to see an occupational therapist which means a referral from your GP. If you get a diagnosis of DCD (I was told dyspraxia is a symptom not a diagnosis by the occupational therapist confused - nobody has ever heard of DCD so saying dyspraxia is easier) the OT can give you some exercises to do and hopefully the school will do them with your DS as often as they need to be done - daily for my DS. The OT trained one of the LSA's in what exactly had to be done and OT came a couple of times a year to see how DS was getting on and update the programme. They even came in early with DS to do them before school so he didn't feel left out.

As for what to tell your DS, if he knows he is struggling in some ways, you could just say what I did and tell him that you are going to see somebody who might be able to make things a bit easier but first they have to find out what he can and can't do. My DS accepted this with no worries. I didn't go into the ins and outs of what might be wrong, just that he might need some extra help and this is the way to get it.

Good luck with your assessment though. I hope you get some answers sooner rather than later. It is all a bit of a worry isn't it? You have my sympathy. smile

BigBoobiedBertha Mon 29-Oct-12 21:59:36

When I say 'they came in early' I meant the LSAs - it makes a huge difference if the school are supportive. We have been very lucky. I know not all schools are as good.

Nornironmum Mon 29-Oct-12 22:16:58

Thanks so much Bertha he really sounds like your ds. We are thinking dyslexia because of me and my brother and my dad, but it may not be and could be something else altogether. I don't think it's dyspraxia his balance is good, could ride a bike easily and a good ice skater etc, my brother has no balance or co-ordination but then everyone is different so he could be? It's such a mine field really. I just can't wait to get the report and know for sure, it's terrible it costs so much but I'm lucky we are borrowing the money from my mum to get it done but its horrible for those who can't and just have to wait. I read that any son I have has a 75 percent chance of having dyslexia, I wonder if this is true? I also have a younger ds, don't know where I would get the money to tutor them both.

auntevil Mon 29-Oct-12 22:25:38

Yep, a high % of children with dyspraxia have dyslexia and vice versa. There is some opinion that both are symptoms of Developmental Coordination Disorder (DCD) - but often in UK called Dyspraxia.
There are many crossovers - ADD, ADHD, ASD, DCD, SPD etc. The more in depth the assessment, the better able you will be to work out what areas you can make the most improvement on.

KeepOnKeepingOn1 Tue 30-Oct-12 09:43:18

norn DS2 has very good balance and learnt to swim, ride a bike, scooter, skateboard before his peers but he has hypermobility and has real problems with writing. otoh DS who is dyslexic and only mildly dsyspraxic had more problems - especially learning to ride a bike. This is common in dyslexia rather than dyspraxia though it seems to go against commom sense. DS2 was assessed by OT following GP referral. They check gross and fine motor skills, visuo-motor and visuo-perceptual skills, sensory processing etc and can be very useful. DS2 has been given exercises (commando crawling, throwing and catching, pushing and pulling etc) that are pre-requisites to being able to have good enough skills to control a pencil. He needs to improve these skills before he can improve fine motor skills.

BigBoobiedBertha Tue 30-Oct-12 11:33:54

Yes, I just wanted to agree with what the others have said. There is co-morbidity (horrible phrase) between a lot of these conditions and in the end the label gets applied to the condition that is closest to the particular difficulties your child has. In a sense the label doesn't matter much so long as the school or anybody else for that matter, realise that there are problems and help the child not work to the label.

Also not every child presents the same way any of these conditions (probably why they are so difficult to diagnose). DS isn't really what I would call clumsy, he doesn't trip over his own feet or drop things which a 'typical' dyspraxic child might do but he certainly has trouble with anything, including writing, which requires fine motor skills or the use of both sides of his body together, like cycling or swimming, particularly where his hands are involved. Tying shoe laces, his school tie, using a knife and fork together and even just simple things like carrying a cup in one hand and a plate in another, he can't quite work out how to use both hands together. He would be a rubbish sewer or knitter!! grin

The good thing is that because it is a developmental disorder it doesn't mean that he will never do them, it just means it take a lot more time and practice to get to the same stage as children his age should be at. I was going to say that by the time he is an adult he would probably have caught up but I don't think I want him taking to the road in a car until he is about 30! The thought scares me witless!!

Anyway, I suppose the point is that you might need to see a range of specialists before you get the full picture.

BigBoobiedBertha Tue 30-Oct-12 11:37:57

Oh and I was wracking my brains to think of the name of it but the writing practice books that the OT and the school recommended, as well as a lot of people on MN over the years is Write from the Start. It is fairly expensive (£20ish for what is essentially a lot of work books) but the school might already have it and if not, it is worth the investment and 10 minutes at home every day.

A little link to it if that helps

Nigel1 Tue 30-Oct-12 17:11:33

If he is presenting as the teacher describes then it is likely that he will have significant difficulties. That will mean that he will need to be supported through his education so get a SSEN. To put in place private tuition at this stage will blow any chance of a SSEN. Wait until the EP report is through to make a decision. Make clear that you may need it to go to a Tribunal and it should therefore be of a medico-legal standard and state explicitly what provision he will need in a school.
Hope this is helpful

Nornironmum Thu 01-Nov-12 22:21:10

Thanks everyone had the assessment today will have to wait on the report. The Ed said he does not have dyslexia he scored high on the tests either average or above and showed no indicators of it at all.
He said he sees nothing that points towards either dyslexia or dyspraxia at all, but maybe a little ADD, but nothing major he wouldn't even say its a disorder.
He said he is just young in his class in year 2 but only 5 in Northern Ireland they start school at only 4, he said its just taking him longer to pick writing etc up and that's all it is because he is a boy who is youngest I'm his class also. To be honest I feel like I have thrown away £500 today and I just don't know where to go from here, his teacher saying he is very behind the rest, maybe the reason for this I's that he is just below average and that's all there is to it? Just confused now

mummytime Thu 01-Nov-12 22:38:59

Your son is only 5! I would have strongly advised you not to have a dyslexia assessment at this age, as it might not pick up dyslexia, he hasn't been in school long (regardless of starting at 4); and even if it had been picked up it might have seemed milder than it is.
You need to go to school and find out what they see as his issues and what they are going to do to help him. I would suggest you start to keep a diary of what school say to you, what they say they will do and when results will be measured, and issues you bring up with school and their response.
Also from what you have said it sounds more like dyspraxia, but even then he is still quite young. If you saw an Ed Psych I am not sure that is the correct person to diagnose dyspraxia.
I would suggest you read to him lots, especially including lots of poetry. Maybe get his hearing checked too. Keep working on phonics, maybe as games (no books) just "I spy with my little eye something beginning with the sound "c" " etc.

Niceweather Fri 02-Nov-12 08:06:16

Was the EP a specialist in dyslexia? I guess for £500 they must be so apologies if the rest of my post is irrelevant. My DS has dyslexia and yet has managed to pass some dyslexia tests. He, like your DS is very verbally strong which helps him compensate. He was an early talker who learned to read by word recognition rather than phonics. He has an excellent memory and only has to read a word once and he will remember it but give him a nonsense word and he will struggle. He could pass a spelling test but he cannot spell when he is writing. His reading is above average but 5 years behind what might be predicted from his verbal IQ. His writing has always been a real struggle and maths has been a challenge as well. Try a Google on Stealth Dyslexia. It might be of some interest to you.

KeepOnKeepingOn1 Fri 02-Nov-12 09:15:30

DS1 was assessed by the lea EP at 8.3 years and using the WISC-IV and was not dyslexic, by private EP using the WISC-III at 10.9 and was dyslexic and again by lea EP at 11.8 years using WISC-IV and was dyslexic. Assessment attaintment changes over time and the demands of the curriculum increase over time. See what the written report says - they should also have done standardised writing speed tests.

I would speak to the school and get a referral from your GP to the OT re fine motor skills.

BigBoobiedBertha Fri 02-Nov-12 13:44:14

Sorry the EP hasn't helped much. That must be very frustrating. sad

I was a bit afraid of that it would be inconclusive as your DS is very young, and as I say, my boys' school won't assess for dyslexia in the infants at all. They do a non-reading screening test to pick up children who might well have it but they don't do the full tests until the juniors.

Whilst the EP should know what he is talking about wrt the dyslexia, I would still go to the GP and ask about an assessment for dyspraxia if he is that behind with fine motor skills. However, I didn't realise that your year 2 was different to our yr 2 in England where they are 6-7 not 5 yr olds. Your DS has been at school less time than I thought so I am now tending to think the teacher is scaremongering a little - it is so difficult to say at this stage. My boys couldn't write when they started school, DS2 was reluctant to even hold a pencil and they struggled with writing in yr R (4 yr olds) but DS2 got to grips with it in yr 1 which I think is your Yr 2 from what you say. Your DS may be a 'typical boy' and just not really engage with writing much yet. It might not mean he never will.

It was my DS1 who has dyspraxia and still struggles but he has never seen an EP in his whole time at school so I am a bit dubious about their usefulness for dyspraxia. Talk to the school again. Get some clarity on what they expect from a 5 yr old's writing and fine motor skills and, if needs be go to the GP for an OT referral.

FWIW, DS1 saw a clinical psych as part of his assessments at 4/5 yrs and she said he had Aspergers traits but not enough for a full blown diagnosis. He still ended up with that as his one of his diagnosed conditions and whilst it isn't a perfect fit for him, the traits do get more obvious with age so don't rule out getting a second opinion, via the GP about the ADD as well. I don't know much about it but you might find that it is a better 'fit' for your DS than the things you have been considering so far.

SoontobeDoctorEll Mon 05-Nov-12 16:53:57

Hope I'm not too late to be of help...

Diagnosing dyslexia before age 7 is a risky business but not impossible. There are pros and cons. If your child is dyslexic, then the interventions are best put in place as early as possible, however, at this age, you are more likely to get a 'false positive' (i.e. a diagnosis of dyslexia when, actually, your child may just be slower at developing phonic awareness).

I know diagnoses are expensive - your average EP will charge £500 or there-abouts as do most places like Dyslexia Action. I'm a bit concerned as I read that EPs only seem to do a couple of tests to give a diagnosis of dyslexia... it's really not that simple. Your child should be having tests for ALL of the following:

attainment in both English and maths
general intelligence (problem solving and reasoning)
phonological awareness
processing speed
memory and learning
fine and gross motor skills

I suggest that you visit the PATOSS website to get a specialist assessor: an Educational Psychologist is will be qualified to diagnose but a specialist may be able to give a more in-depth analysis and point you in the direction of more specialised support. I make the analogy of an EP being like your local GP - good at pretty much everything - but your specialist assessor being more like your specialist at the hospital, who has a more in-depth knowledge of a specific area.

If you live around the Sheffield area I can do a full diagnostic assessment for dyslexia and/or dyscalculia and can screen for dyspraxia. In-box me if you're interested, I'll send my contact, qualification and professional membership details, CRB, prices (less than £500!!) and so on...

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