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9 yo possibly dsylexic trying to get diagnosis is a nightmare

(24 Posts)
kezza83 Wed 08-Jan-14 10:15:26

My 9yo is currently working at a stage 1-2 on his ready writing and maths.

he has started getting very angry at home and frustrated with himself because hes noticing hes different to his peers.

School have said he has mild learning difficulties and auditory memory problems. His eyes and ears have been tested all came back fine.

my husband has dyslexiic symptoms and should have gone to a special needs school but didnt. I wondering if it is hereditory.

Im pretty sure my son has form of dyslexia and i know if he had a reason for his difficulty in putting pen to paper he would start to feel better about himself.

ive been into school again today and im waiting on another phone call about getting him seen by a EP.

dont know what else i can do to help him, i feel although im trying to get him help im not doing enough.

bjkmummy Wed 08-Jan-14 10:26:41

I had to go privately to get my daughter dx - she is now 10 and in year 5 and was dx in October. school ppromised early this year to call EP in and then 6 month later when they said she had made no progress then would not call the EP in - I guess partly as the school has to pay for the EP to come in. it cost us £475 to get her dx - she was seen very quickly - now I have the dx its now a fight to get her the right support. if the school say they will call the EP in try and get a time frame from them - also are the school putting in any extra support - has he been put on school action , have an IEP?

kezza83 Wed 08-Jan-14 12:58:23

He does have a IEP but as yet i havent seen it. He is not making enough progress in my opinion.

Im waiting on a call to see if they will pay for him to be acessed. They have already said they will not get a statement done as his learning disability is not severe enough. I believe this is because he is not hyper active nor disruptive at school.

Infact he is the opposite which is why im worried hes slipping un-noticed as such.

bjkmummy Wed 08-Jan-14 13:17:20

yes my daughter is similar - she is one of the most well behaved children you would ever meet - every school report comments on what a lovely girl she is which is fantastic of course but being 'lovely' has led to her largely being ignored and now at age 10 4 years behind academically!!!!! I have just applied for a statement for her as her dyslexia is so severe and I have spoken to the secondary schools - one will refuse her if her levels don't increase and the other one better but in reality my only hope of getting her in there is with a statement.

I happily just let my daughter get on with things thinking she was okay - granted with two asd boys I have been rather busy over the last couple of years with tribunal/statement/schools but this oversight has now come back to bite me on the bottom. hopefully they will agree to assess him - would you be able to get him seen privately if needed? my daughter was seen by dyslexia action. it took about a month to get the appointment and they told me there and then she was. got the report a week later which then shook me to the core as although I knew she was dyslexic I was horrified to discover the true level of her difficulties

TOWIE2014 Wed 08-Jan-14 13:25:49

If the school refuse to have him assessed, I would strongy recommend you go down to the private route and get him assessed yourself.

Dylsexia Action are very good and very switched on to dyslexia (obviously!) They have their own private EPs who will be able to assess very quickly. It'll just be a question of arranging a suitable appointment time. They have branches all over the place, so you should find one near you - but they are about £400+. Here's their website dyslexiaaction.org.uk/

EP should be able to test for memory issues. It could be possible that your DS has auditory processing disorder. These all tend to go hand-in-hand with dyslexia - as does dyspraxia. Do you think your DS is dyspraxic too? EP won't be able to diagnosis auditory processing or dyspraxia, but might be able to give you pointers. (I am not diagnosing via the internet btw - but they do very often go hand-in-hand)

As bjkmummy says, this will give you the diagnosis but then you'll have to fight for the support.

I really don't know what the current thinking is re: hereditary. I am dyslexic (diagnosed at 11), my DD1 is too (diagnosed at 17) - as is my DS1 (diagnosed at 6). Looking back in hindsight, I'm sure other members of my family were/are too.

Getting angry and frustrated is another problem for dyslexic children to have to cope with. In my DS's case, I was told to get him the right support asap before he became disruptive because it was become evident that because he couldn't cope, he was starting to become obstructive (but strangely, not disruptive). The obstructive side of his nature was getting stronger because it was becoming one of his main coping mechanisms.

When DC was in an indie mainstream school, he ended up becoming very anxious and I had to remove him from the school to home ed because his dyslexia was so severe.

With DD1 - who as a child was very compliant and polite - she sailed under radar and was totally failed by her secondary school (primary was excellent). She sat there quietly not learning and doing nothing. As adult, she's done really really well and is very successful in her chosen career, but I honestly don't know why I even bothered send her to school because of the amount she didn't learn!

I would strongly recommend getting a diagnosis as soon as you can. Now your DS is 9, the clock is ticking before he starts secondary.

My DS dyslexia is so severe that I had to fight for him tooth and nail at Tribunal and he is now in a tiny indie ss for dyslexics. Now he has the right support, he is thriving.

Good luck!

kezza83 Wed 08-Jan-14 14:00:40

Thanks so much for all your comments and advice.
Bjkmummy i totally get what your saying and im sure when my ds gets asessed it will shock me too. The secondary school situation is a real concern of mine and my ds. Im worried that he wont be able to cope with the work load or wont get accepted into them if his sats are not good.

im pushing for the school to get him asessed but if need be i will find the money for a private asessment.

i just want to make sure he gets all the help he needs as hes a clever boy and i wont have him thinking otherwise.

lets hope the school acts now because im not letting this drop.

kezza83 Wed 08-Jan-14 14:18:59

Also the school has had a teacher from another school come in and they have said he does have auditory memory problems. Like i said his hearing and eye sight have been checked and they were both fine.

TOWIE the anger and frustration sounds very much like my son. He lets it build up until it erupts and then he feels a bit better. It seems to be his way of letting his frustration out and coping.

PolterGoose Wed 08-Jan-14 17:43:03

Message withdrawn at poster's request.

kezza83 Wed 08-Jan-14 17:52:27

PolterGoose thanks for your advice yesterday too smile

Allthreerolledintoone Thu 09-Jan-14 23:04:47

Kezza I could of wrote your post my ds is 9 and since year 1 I had major concerns yet the school did not refer him. They only recently made a referral to Salt as he was under them before they have now urged a second salt opinion and a referral to a paediatrician via gp and an ed psychologist. I am pretty pissed to be honest as now they finally agree he needs a lot more help because although the school give him a lot of support his poor memory skills means he cannot retain it and any progress is very slow or easily lost. He says he' is stupid, cries when he has to read. He can be really good at maths one day and yet another he cannot even add 5 and 5. He muddles his words and forgets a lot of things. Homework is so so painful as he cannot even read the question or if he does it is such a struggle that he cannot comprehend it.
Can a secondary school refuse to take a child??? What about inclusion???

We also have dyslexia in dh's side of the family but I am wondering if it's dyspraxia too. I had an awful birth and pregnancy which makes me wonder.

bjkmummy Fri 10-Jan-14 09:27:06

in theory of course a secondary school cant refuse a child however I viewed a secondary school recently and they openly stated that unless my daughter was a certain level then they would refuse her and if I got a statement for her naming specialist teaching then they would refuse her as well - of course they shouldn't say that but they did and what parent would want to put their child in a school so open about not wanting them

kezza83 Mon 13-Jan-14 14:24:45

Allthreerolledintoone i get ya. My ds is exactly as you have described yours. My son struggles with maths too, home work is one long painfully battle.

I just got his school tagets and its not good. Hes currently working towards level 2.

Senco at school have put him down to be assessed by EP next time there visiting school, but as for the dyslexic assessment im going to have to fund it myself.

its so heartbreaking to hear your child speak that little of themselves but all i can do is praise him alot and tell him im doing everything i can to get him help.

Let me know how you get on and good luck xx

Allthreerolledintoone Sun 23-Feb-14 00:32:06

Hiya kazza, have you made any more progress with school??? We are just playing the waiting game now :-(

nostoppingme Sun 23-Feb-14 05:38:26

Dyslexia is most certainly hereditary. I was screened at the time my son was diagnosed and was told I am dyslexic too.

School is not going to help you, they will string you along. Especially when your son (like mine) is very quiet/invisible in the classroom. You need to get him diagnosed privately; also for any other of the DYS (dysgraphia, dyscalculia, dyspraxia) and start the statementing process now. It is horrendous, we have been there and got a specialist dyslexic school fully funded by the LA after an almighty battle.

I won't go into detail what we went through with school and our son as it is now in the past and I would like to forget about it. It was pure torture. All I will say is that you are your son's ONLY advocate. He needs to come out of there as mainstream schools are not the place for severely dyslexic children. Early intervention is key and now at 9 years old, time is of the essence for your child - not only academically but also his mental health.

Please also know that Dyslexia is a gift and we have AMAZING strengths!! My son is now very proud to say he is dyslexic and says he has super powers (which he does)

Happy to help if/when you embark on the statementing process.

All the best....and stay strong! You can do it and remember that your son will flourish one day xx

Handywoman Sun 23-Feb-14 09:34:02

nostopping I am wondering about the future for my poor dd1

She is in Y6 and still not able to read for meaning very much sad

Her maths and English are NC level 3a. Her comprehension and social understanding are in the top 3% and she is very quiet, compliant, tries to hide her difficulties so her self esteem is on the floor. School have been rubbish and SENCO and I seriously fell out when she blamed me for causing my dd's anxiety by being anxious myself(!) although we are on good terms now. I feel I have failed her although she has had one hour a week with fab specialist tutor, wears tinted lenses, listens to audio books, I work 4days/week and have dd2 with ASD and other issues. Am also now single parent now that I've got rid of the useless miserable baggage that was exH (so a positive step).

I feel my dd1 should be at specialist school but don't know if I can face the fight (live in an LEA which is ruthless and goes to court over everything ). Can't afford legal advice.
It is awful. I know her NC levels are not awful but I am seriously wondering about secondary school.

sad sad sad

bjkmummy Sun 23-Feb-14 16:27:26

My daughter is in year 5 and on 2a levels. We have been refused a statement and are currently appealing with tribunal date set. I'm wondering still if specialist schooling is something I need to consider but time will tell. It's awful knowing the they are struggling but as they are compliant at school no one seems to want to help. I'm resigning myself that whatever happens in the next few months that the current school placement will break down and then will have to make some tough decisions.

Handywoman Sun 23-Feb-14 20:15:16

My dd1 was 2a level for a whole year (for some reason school tried to refute this despite me having school reports confirming this) year 4 to 5 whereupon I kicked up an almighty stink then SENCO and me fell out and lo-and-behold she miraculously went up to 3c after all. Her specialist tutor disputed this. It's such a stitch-up and a racket they just make it up to suit. My dd1's academic self esteem is zero. But yet she's of above average intelligence. So unfair sad

nostoppingme Mon 24-Feb-14 01:39:44

((((Handy woman))))

First of all; you haven't failed your daughter. As a matter of fact, your daughter is so fortunate to have you.

I realize as you are a single parent and work 4 days a week plus you have another child with ASD and other issues, you have very little time to do research.

But as hard and difficult your situation is, try to look at the big picture.

1) You need an advocate - if you are a single parent, you could be entitled to free legal help (advocates are A LOT cheaper) .. I can give you names of advocates if you send me a PM.

2) You need your own private reports by the best possible experts (start with an EP report) ... Is your ex husband in the picture at all? I presume he won't help you financially? Is there a family member who can help you with funding? Can you get a bank loan? I am happy to give you a break down of what it cost us in total.

3) Start the statementing process now and don't be derailed by anyone who says your child won't get a statement (or specialist school) ... You need to be very very determined.

You can do it. Think of your daughter.

bjkmummy Mon 24-Feb-14 07:07:54

It is draining. My daughter stuck for about 18 months and now we are heading to tribunal all sort of games are being played. La refused to statement her basically because they say she is making progress as she recently went up one sublevel. However, with the help of people on here I wrote down her progress and she is consistently and substantially behind her peers. She may have gone up but then also have all of her peers so the gap has not closed at all and in fact from year 3 to year 5 the gap has got wider. Dh is of into school this morning to confront her class teacher as we have learnt she was kept in at playtime etc to re write some work that was later shown to a mystery someone who we have no idea who and the teacher excitedly telling my daughter how her writing has gone up a sub level. When she came home and I asked her to write about it you could read what she has wrote as her writing was so poor.

Handywoman Mon 24-Feb-14 08:08:05

Thanks nostoppingme I do have 2 private EP reports, the last one was a year ago. It's a fab report actually and led to an IEP (apparently,never seen one) after 3 years being told she would NEVER get an IEP. But she's going to secondary in Sept I don't know whether to and whether to liaise with school first/wait for her new teachers to give me feedback. I will pm you thank you

bruffin Mon 24-Feb-14 08:14:49

Why do you need a diagnosis?

DS has got to the age of 18 without an official diagnosis. He gets extra time in exams, he extra help when he needed it and had IEPS.

Handywoman Mon 24-Feb-14 08:27:31

She already has a diagnosis she was dx age 7 now about to turn 11

bruffin Mon 24-Feb-14 08:36:58

This thread isnt about you Handywomen. The OP is asking about getting a diagnosis.

Handywoman Mon 24-Feb-14 08:51:28

Oh yeah

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