Indigo's depressing update thread

[IndigoBell]

(This thread is for those of you have been following my DDs story so far)

Had an up and down year so far. After telling me she was a 2b in reading last year - she was assessed as a 1b this year. :(

Then I saw her teacher just before the holidays, and she's been doing really good work. For the first time ever I could actually read it. Miles better than the work she was doing at the beginning of the term.

Today had a brief word, and apparantly 'progress is slower than expected' with relearning learning 'split e'. (Which is one of her targets on her IEP)

And then today she came home and wanted to write a novel (great). But once again it is virtually unreadable :(

Catu A trific berthday

Hi I am Bile it is my 6 bthedon mum and dad gin to tac me to the poo I bon see wot cod ow rog larstyar I had a prod tam with sirel

mum gifig me rm dar and nud rus wut dad the opsit He cart wat mum cep on in barsig me but dad was the fos win in I wis we did breg mum

(Chapter A Terrific Birthday

Hi, I am Billy. It is my 6th birthday. Mum and dad are going to take me to the pool. I don't see what could go wrong. Last year I had a problem with cereal

Mum giving me arm bands and rubber ring. But dad is the opposite. He can't wait. Mum keeps on embarrassing me but dad was the first one in. I wish we didn't bring mum)

(And more paragraphs, of a similar standard)

The handwriting is a lot better than it was. Spelling is slightly better. :(

School say the are 'concerned' by how spiky she is. ie the difference between what she can do one time to another :(

I will not give up. Never. But bloody hell it's hard to know what to do :(

she obviously doesn't feel completely knocked back by her difficulties

Her reading is so bad she doesn't even realise she can't spell.

Nobody's ever told her that her spelling is undecipherable, so she happily writes pages and pages.

If she remembers what she wrote, she can then read it back.

If she can't remember what she wrote - then it just looks like all the other words she can't read. :)

Funniest thing was when I asked her if she'd read out her (marked) homework to her teacher, and she said 'Yes, but I don't know why. Miss M is good at reading'

Have nothing really helpful to say but it sound slike you're a lovely mummy. Your DD's story is full of imagination too. Has your DD been at this school long? Have you considered moving her - it's just you sound really unhappy with the way the school are operating.

Found it - it was on a thread about a little girl who was losing words..

RandomMess Sat 29-Oct-11 21:04:36
Remember hearing is a 2 part process, physical hearing and then auditory processing. With glue ear they can't physical hear properly for a while then it clears and then the brain has to relearn how to hear, they get glue ear again and the brain forgets how to listen properly etc etc etc

Also when I said my dds hearing curve wasn't normal, in one ear in the highest frequencies she was at 39 decibles the other about 35, 40 is the cut off for hearing impairment I am still absolutely fuming that they classed that as a pass when she spoke with the classic intonation of a hearing impaired person and the sounds she didn't use at all are all the ones they should learn first ie the high frequency ones. So please do not assume that her hearing is fine!

Paediatrician: mainly because if going backwards (though i see now that actually she is making progress) could be something wrong and if spiky could be something treatable wrong like epilepsy/hearing

We've moved school, and I'm very happy with this school. They are being brilliant. Doesn't mean they can help though.

Her problem is with auditory processing, not hearing. I've seen her audiograms and they're very good. She has almost perfect hearing.

It's not epilepsy (But a good thought ) - there's no 'absences'. Absolutely nothing like that.

So we're working on her auditory processing, and her diet, and her retained reflexes. School are working on her phonics. And I'm sure I will crack this, and I'll have a delightfully happy thread on here in a few months. But it's just a long, slow ( 5 years so far) and very depressing process.

Okay, I hate to use the word, but have you considered Auditory Processing disorder? Could you ask for a referral to GOSH for an assessment? Maybe even a hearing problem which comes and goes could explain some of the spikeyness?

Two things that helped my son a bit when he was around this stage and I have used with some success with others:

Writing our own stories - using language that can be decoded, using family friend names for recognition. They ended up being far fetched adventures for the dog! Or football. Ds's choice not mine! Kept to a page a day, printed nicely with pics. Then ds could read different stories to me/others every day.

Writing - we made mini books and tried to do whole pages without errors. A much easier target to achieve than doing a whole school book size properly! There are lots of US websites with clever ways to fold paper to make interesting mini books. In fact I use them quite a lot for phonics too.

She's very lucky to have you. I hope there's more forward progress soon.

I'm sure she has a lot of the symptoms of APD. But I'm not looking for another label for her, I'm looking for a way to teach her to read and write.

And seeing as dolfrog as so convinced there's nothing that can be done to help APD, I can't see any reason to go through the stress of getting a dx. I haven't ruled it out, but am waiting to find evidence that a dx of APD helped a child learn to read and write.

Her hearing doesn't come and go. She consistantly struggles with certain aspects of auditory processing.

I would go to GOSH if I thought they would help her. But a letter saying she has APD and can't hear well in noisy environments, etc won't help her. School are aware of her auditory problems and are doing sensible compensating stuff for her.

I'm not at all interested in getting more compensating strategies in place for her. I'm only interested (at this age) in teaching her to read and write.

Auditory processing difficulty plus spiky performance : I still think paediatrician. You need to know why and if its treatable. The strategies for learning also depend on the diagnosis though every child is an individual. I thought that place you spent lots of money on was useful but didn't look at the whole picture.
No need to go for GOSH, your local developmental paediatrician will be just as good and probably better. Even if no diagnosis, at least treatable causes will be excluded. Good luck

Indigo, did you know that RWI have just produced a tutoring kit for 1-1? Everything is in the kit - comprehensive instructions and starts with the basic code. There's a review here:
www.teachprimary.com/tried_and_tested/view/one-to-one-phonics-tutoring-kit

As she's doing RWI at school perhaps you could consider doing it yourself at home or sharing the kit between yourself and school. I don't know how viable an idea this is. Only you would know that.

HTH

Dolfrog is one of the most depressing people I have come across. I don't listen to him, and fortunately my son is now on track to get some A* at GCSE. I really advise not to listen to anyone who says nothing can be done, as we are learning so much about the brain still. I have a friend whose daughter was diagnosed with general learning difficulties at primary school, she is now in sixth form and hoping to go to Uni and study an Art based course (not oxbridge but pretty good for what used to be hoped for her).
Have you read ALex Richardson's book on diet? She's the most scientific person in this area. So some of it might help.
But I would want a paediatrician involved personally. (DS is just dyslexic with some emotional difficulties related to writing.)

Maverick - thanks for the link. But I don't think RWI (or any other learn to read scheme) can help.

She's had 3 years of RWI at school, and is still getting it. So at home I'd rather do something different with her (which we are).

FunnyPerson - maybe you're right. The AIT helped massively. She has made massive progress this year. But there are still other problems there.

I just have never had anything useful from the NHS. My DS is under the development pead, I like her and think she's good. But she doesn't actually do anything. She didn't recommend a single thing to help DS. Did very few tests on him. All she did was give us a dx. (Which in his case I did want)

I think unless I have an idea of treatable causes I want to be excluded there is no point in going to the paed. And so far I haven't found any treatable causes I want looked at.

Although I'm very open to suggestions. If anyone can think of anything it might be, I will look into it. Thanks to the suggestion upthread, I will research Epilepsy a bit.

I think she has leaky gut, and am trying to work out who the best person to see about that is. Everything just takes time. I'm very hopeful that we get her diet right and we'll get another huge breakthrough. Playing with her diet for the last few weeks has helped.

(Like I keep saying. This writing is good for her. She has made huge progress.)

Both my DD and a close friends DD are dyslexic with auditory processing problems and mearles irlen.
Stop worrying about labels, I'd give DD a million labels if it gave her the help she needed. That's your worry not relevant to her needs.
There is a fab guy in Scotland who specialises in auditory processing problems, it sounds like your DD needs some more input in this area. Have you had a colourimetery test done for her, coloured lenses help my DD imensely with her reading and writing, and friends DD actually hears differently, picks up close consonants when she has her coloured lenses on. Amazing breakthrough for her.
DD is also very up and down with her spelling, tiredness or stress makes her much worse, and she can spell the same word 3 or 4 different ways in the same essay. However she's recently got 10 B's and 2 A*'s at GCSE.
Again don't worry about labels, they're there to get the help that's needed.

Maverick - have you seen the price of that kit! It does not appear to be marketed at concerned parents :)

mummyTime Thanks for the books suggestion. I will buy it and read it. Am currently reading a number of books about diet and dyslexia. All of them with completely different advice :) But they're all interesting and useful.

I have been asking the GP for years to refer her to the paed. It just ain't going to happen. Paed's don't deal with 'dyslexia'. So unless I have a hunch about it being something else that paeds do deal in, there is no point in pursuing that avenue.

Did the paed have any good advice for your DS?

Do you have any other book recommendations?

Paranoid - she's had a colourmetery test, and doesn't need coloured glasses. She did have some minor vision problems, which we corrected using vision therapy.

Do you know who the fab guy in Scotland is?

indigo, i'm sure you know that there are various commercial software programmes out there that claim to 'brain train'. some have been shown to help improve phonological awareness. have you thought about or looked into any of these.

could your dd's spikes be down to the amount of background noise when she completes a task

I'll ask my friend for his details and get back to you.

Pickled - yes, she is currently doing one of those auditory brain training programs. Too early yet to tell if it's working, but I'm sure if we keep at it for a year it will help.

I don't think there is a link between background noise and spikeyness - but maybe. I'll keep an eye on it. I'll ask school for more info about when and how she does well. :)

Paranoid - thanks. Names of fab guys is very much what I'm looking for :)

Indigo, has your DD had any reading rescue intervention?

Another thought, is whethe precision teaching would be a good move...perhaps Moondog?

Lougle - She hasn't had any Reading Rescue. But I don't see how she could possibly get it. Nor does reading the website make me think it would help her.

(Although I would be very happy for school to do it with her - but there is no way that's going to happen.)

(It is also aimed at 1st and 2nd graders. And she's older than that now.)

We've tried precision teaching. It doesn't work because it assumes that with practice you can get better. Which isn't true in this case. Or at least it isn't true that she gets better through practising reading.

It may be true that practising auditory subskills will help - which is what we're doing with her. The software we're using does use precision teaching principles. And I help it will help.

Hi Indigo,
Ian jordan is his name. Friends DD was assesed there and he just seemed to know more about this kind of stuff than most. The fact that her auditory problems improved with coloured lenses on wouldn't have been picked up in a standard colourimetry test, in some cases they are now being used for autism as they help with sensory problems too.
www.jordanseyes.com/page2.htm
Hope it helps.

Thanks. I had heard of jordan eyes, but didn't realise there was any link between coloured lenses and auditory processing.

I think friends DD was one of the first cases he saw where lenses affected auditory senses. The human brain is an amazing thing, yet so complex as well. Some are just a bit more complex but will have other amazing talents.

I think you are probably encountering the natural "up and down-ness" that happens with all children but seems to be more exaggerated in children with specific learning difficulties like dyslexia.

I am having some similar problems with a year 3 student who is like this with maths. She does some quite (for her) complex work easily and you think that she is fine and that maybe you pitched the work too low, then the next minute she can't add 4 + 2, not even using fingers! It's like she is on a slippery surface and "slides away" from doing mathematical tasks really easily!

Sarah - You don't have any clue as to why she can sometimes do stuff and sometimes can't?

Is there really no rhyme nor reason to it?