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 :(

Can you not get a referral to a specialist nutritionist from your GP Indigo?

mrz - On the whole, I just don't trust the NHS :(

Bits of it are good, and I'm sure they all try their best and work very hard etc, but I've had almost no good experiences of the NHS for either DS or DD.

Lots of referrals, lots of specialists ( well for DS, almost none for DD), but no good advice or practical help.

I don't think a nutritionist will be particularly expensive, so I'd rather just pay for it.

I'll be amazed if I can manage to get DD seen by GOSH.......

Too many people on the SN board have had bad experiences of NHS nutritionists.

Please can you tell me what GOSH stands for?

Great ormand street hospital.

Apparently it's the only place in the UK to test for auditory processing disorder. Which DD may or may not have.

I don't really want to put me and DD through the stress of it all, when I think there is almost no chance of it being useful. But I can't say for certain it won't help. There's a tiny chance it will be useful, so I'll at least attempt to get a referral.

Try a speech language pathologist before you go to an audiologist.

Have you read "Is This Your Child?" by Doris Rapp? (wrt diet and leaky gut)

Re:Cogmed
I've been curious about Cogmed for some years and now it seems to be more 'out there' with more people trying it and having an opinion!
I heard Prof. Susan Gathercole of the MRC brain and Cognition Un t at Cambridge speak favourably about Cogmed at a conference, despite her initial dismissal of it.
www.mrc-cbu.cam.ac.uk/people/susan.gathercole/

In her book, 'Improving Working Memory" Tracey Packiam Alloway describes a similar but vastly cheaper alternative to Cogmed called Jungle Memory. Tracey Alloway is a colleague of Susan Gathercole's.
junglememory.com/

In her blog the Perfect Score Project, the author does the Cgomed training and describes it, worth a read IMO.
perfectscoreproject.com/

Jungle Memory might be worth a try before investing in the time and cost of FF.

MathAnxiety - Very interesting article. Thank you.

is a speech language pathologist the same as a salt? She's been assessed by a salt who found nothing wrong with her speech. But it was an assessment done at school and I don't think it was very thorough.

If I can't get a referral to GOSH I'll try a speech pathologist.

I'm just reading 'is that my child?' now. It's very interesting.

Malaleuca - we tried jungle memory years ago and it was far too hard for her. I wouldn't really recommend it for a kid with severe problems.

Interesting to get feedback re the difficulty of Jungle Memory, thank you.

I just did that Working Memory test with DD and DS2 who is a year younger than her (and doing very well at school.)

And they both did equally well. They both struggled equally with recalling 4 numbers in reverse order. (I expected DS2 to do far better than DD)

Which ties in with the cognitive profile that says working memory is not an issue.

So it really does seem to be an auditory problem.

Malaleuca - I think we did Jungle Memory when DD was in Y1, and she was really bad. But she was in the recommended age range.

It has 2 games. You need to get 10 / 10 right to 'get the reward' and go up a level. So if one day she got 5 right, then the next day she got 6 right she got no 'reward' (singing monkey or whatever it was) and felt bad. So she felt like she hadn't improved.

Plus the 2nd game involved adding up. Something she couldn't do at that age.

We did it for a few weeks, but she was so stressed about it that it was sensible to give up.

Hi there Indigo. Glad this thread has refreshed your energy a bit.

Just wanted to mention that we would consider struggling to reverse 4 numbers pretty low. That is about where the children I work with are, one a little worse one a little better (at a good time). They all have clinically singnificantly poor working memory and we consider this weakness to to be a major underlying factor in their problems with learning.

We don't think the BRIEF or WISC (one of which I assume generated the cognitive profile for your DD?) is a particularly sensitive measure of WM- partly because it is such a snapshot. Just didn't want you to write it off as an area you could help your DD with.

Cogmed sounds like it is better than Jungle Memory (which I've never seen) as it does not rely on any pre-existing skills (like adding) and rewards improvement (and actually any sustained effort) rather than achievement.

GP cant refer to GOSH only your local paediatrician can, as its a tertiary centre. So perhaps ask for a local referral first: you may be pleasantly surprised.

I agree that the child's perception of her own difficulties and differences is important, and also want to point out that it changes with age, and that this can result in opting out/anxiety/feeling low etc so it is always important to keep the child on board and in the picture as far as possible and tailored to her age.

Good luck and wishing you continued strength.

Hi Indigo

Some excellent advice on this thread. I hope it has helped you to feel more positive.

We spoke in the summer about my daughter who I think has auditory processing problems. I did the test you sent me and it flagged up she had a problem distinguishing between certain sounds.

I have let her settle in to Y2 but am becoming increasingly worried about her progress and am looking forward to her parents evening and also arranging a meeting with the SENCO.

I spoke to the SENCO in passing and she said she thought DD may have a working memory problem and that she had talked with class teacher about DD. She was in a hurry so I let it go until the parents evening.

Could you give me some advice on what I should be asking!? Are there tests / assessments that could be performed on her in school? Are there any interventions I should asking for? She has had basic eye and hearing tests but as I have learnt on MN these count for nothing really!

She seems to be really struggling with processing information, stuggles with any kind of numeracy, lacks concentration (although is very well behaved which is why I think a lot of it has gone unnoticed) - she doesn't appear to hear a lot of the time and forgets things so easily.

Her reading level is coming along (turquoise) but she is not keen and gives up quite easily on other books. Recently I have noticed her pencil grip and any writing stamina have regressed although her phonic and spelling knowledge is showing some improvement.

I'm starting to feel really sad and worried about her and how I can help her.

Sorry to hijack - I always think you are the voice of wisdom!!

EBD - walking home from swimming, when she was tired, she couldn't even reverse 3 numbers :(

Justa - you are right I need a back up plan. I've been incredibly lucky that she's got to this age and is still so happy and confident, and still loves school. (So I guess school are doing a lot right).

My back up plan is home educate or to send her to Summerhill. I don't believe anyone can have DDs problems and enjoy secondary school. So I won't send her.

I didn't even think she'd make it in the school system this far. And if she wasn't so damn happy there I'd take her out tomorrow.

FunnyPerson - thanks! Now, I have a reason to get a referral to the paed. Hopefully this time she'll accept the referral.

Stupidly I have an appt with the paed for my DS in a few weeks - which I'm going to cancel, because he doesn't need to see her.

Hi Indigo

Just wanted to thank you for your advice and support on my thread and to say that I don't know your daughter's history and don't really know what mine's problems are at the moment and there is of course her background, but that I am also experimenting with my DD's diet at the moment. It's slightly different with my DD as she's not spiky she just doesn't get it at all. However, I have been researching nutrition and experimenting with DD since September as one of a number of things we are trying.

Have you tried cod-liver oil? Also cold water fish, smoked/grilled/fried- the healthy fats in these are supposed to improve cognitive functioning. DD is currently on cod-liver oil every morning and a couple of mornings a week she has smoked salmon on toast- TA working with DD on her reading is actually able to tell which mornings she has had smoked salmon for breakfast because they actually start to get somewhere with her maths! DD is hugely behind in maths and has little real concept of numbers, though for the first time ever in the last couple of weeks she has begun to get the idea that some numbers are bigger than others, and we are getting there slowly with odd and even numbers. There's no 'proof' of this link as such, but it might be worth a try.

Another thing which seems to be helping DD a little is having a bottle of water during lessons, which I am putting a slice of orange/lemon/lime into. Teacher was funny about it at first, but there is evidence that citrus fruit can help with concentration levels- natural sugars are supposed to help retain concentration. DD truly wants to learn and concentrates as hard as she can but when she understands so little her focus seems to slip without her even realizing; the harder she tries the more she fails, IYSWIM. Again, no proof, but just a small amount of natural sugar seems to be helping.

I don't know for certain if this is what is helping DD slightly but I have noticed a slight change in her since we started this- I think our situations are very different but just some suggestions. :)

TA working with DD on her maths, sorry, not her reading! Reading would be too much of a miracle!

Dream - thanks, that's really helpful.

I can't find any Fish Oil that DD will take (although have just ordered another lot :) ) - but had never heard about natural sugars. Very interesting idea.

You should try cutting out gluten (as an experiment). I'm fairly sure it's helped DDs cognitive functioning a lot.

About speech therapy/speech language therapy, pathology, etc. The school-based SALT seems to have focused only on speech? If you were to go privately to a speech Language therapist/pathologist you might find out more. They can identify language based learning difficulties and provide strategies geared toward whatever specific problems they identify, whether the problems are with the written or spoken word.

Dreameronastar, have you tried cuisenaire rods as a visual aid for maths concepts? They are calibrated in centimetres (1 is 1 cm long, 10 is 10 cms long).

IndigoBell Cod liver oil is available in capsules if you daughter can manage that. Flax is an alternative, grind and add over just about anything.

EBDTeacher What is desirable when remembering numbers in reberse order? The average digit span for children above 7 and adults without error is seven plus or minus two, I think.

Thanks Indigo- haven't tried that yet but will give it a go :)

Mathanxiety- funny you should mention those, just ordered some yesterday! Think they might be exactly what DD needs as she has to be able to see what is happening and how everything fits together- we'll see.

My son is 6.4 and wouldn't even attempt to write that many words ,never wants to at all.Should I be worrying now?

Hi Sorry to jump in. Your daughter sounds similar to my daughter who is dyslexic. We have been doing the Barton Reading system at home and it has made a huge difference for my daughter. She is finally actually learning to read. It is is easy to teach and I have been tutoring her myself.

It does look good but very expensive.

Not exactly what you are asking for (in fact a bit tangential really) but you might be interested to read a book about language aquisition and processing by a bloke called Steven Pinker. It's called the Language Instinct and is totally fascinating IMHO. Lots of stuff about how the human brain codes and decodes phonemes.

Hope you find something to help your DD soon and I hope you take heart from the lady who posted about being dyslexic and having a fab career and going o Cambridge.

I can see why you are thinking about nutritionists - but do be careful about who you approach. Lots of 'nutritionists' have been through very dubious courses (e.g., the Institute of Optimum Nutrition guff) that have a really weak scientific basis.