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 :(

Hi Indigo.

You popped into my thread so i thought I'd pop into yours

hassled directed me to a site about dyspraxia which rang so many bells I was nearly deafened!

Have to say your DD sounds lovely

Well - I think sometimes you can put it down to tiredness, hunger etc, but other times I REALLY don't know. Nor does her Mum! I am beginning to wonder if she has some adhd-ish traits but I'm not sure.

Sarah - :(

This thread has really got me thinking.

Do you think there is anyway your pupil's spikeyness could be to do with diet?

Does she have whole sessions when she's fine, and then whole sessions when she's not?

Or does she change halfway through a session?

I think building up a detailed profile of strengths and weaknesses is really useful. For example your DD appears to be able to communicate verbally and non verbally and doesn't have difficulties with socialisation or peer interaction. She is also imaginative and likes to learn. These are real and important strengths.
She has difficulty processing auditory information and putting pen to paper. These are weaknesses. Short instructions, visual cues, a visual timetable, mind maps, check understanding of what is required in class, etc etc loads of stuff. So thats why the right labels/descriptions are important- to get the right educational interventions.
I once did a job where nearly every mother walked through the door saying her child either had adhd, autism or dyspraxia and they wanted me to say which- as if those were the only things which caused learning problems and as if they caused the same difficulties - they don't. There can be overlap but its no use thinking a mum can read the internet and diagnose whats wrong with her child. It has to be a partnership with a professional.

Timing of spikiness is useful - relationship to meals, time of day, any light/sunlight/noise triggers, end of the week etc.

Or tiredness just at the end of activities which are particularly difficult? This is common. For some children school is like driving in a fog, so it is tiring - little exercise breaks help, then - tea and half an hour of playtime when they come home from school, rather than straight into more reading and writing.

Developing communication skills by joining in with their play and having fun together running about, turn taking ( eg shops, board games) , chatting and role playing is always useful: their questions about their day at school can come out and be chatted about in a low key way. It is as important to develop the strengths as to work on weaknesses. Memory can be visual as well as auditory. So to develop your DD visual memory ( her strength) you can play those games where you have objects on a tray and you take the tray away and have to remember how many; spot the difference; charades; that face game 'guess who' snap, etc.

It doesn't all have to be online.

Sorry, haven't read whole thread, but blue RWI would equate approximately to 2C/B - so pretty much in line with the end of Y2 assessment for reading.

Have you had a hearing test for specific sounds? In the summer term of Y2, a child in my class (who was nearly 8 and had been seeing a host of learning support specialists over a period of several years) had a detailed hearing test and they found specific sounds that she couldn't discern. Does your dd find any sounds difficult to say?

FraidyLady - you're right, blue RWI equals a 2c/b. Thing is she can't read blue RWI books (without support).

Or maybe she can on a good day - but she can't most of the time.

But after 3 years of doing RWI she has managed to progress to blue anyway.

FunnyPerson - thanks for keeping on talking to me.

She has a dx of dyslexia from an EP. I have been unable to get her seen by a paed. She does not have any of the symptoms of ASD , ADHD or dyspraxia.

She does have some (but not all) of the symptoms of APD. I've already tried once to get her tested for this and failed (The audiologist just said her hearing was fine). I can try again, and I might, but I'm just not convinced the dx will help her at all.

I would love her to be seen by a 'professional' - but what professional will see her? As her symptoms are 'unable to learn to read and write' it does not fall into the paeds remit.

I don't care what classroom strategies are needed to help her. That's schools problems. I don't care whether she learns about the tudors or teeth or the nativity or not.

If she does not learn to read and write - none of the rest matters. It's straightening the deck chairs on the titanic.

I'm satisfied that school are using appropriate classroom strategies. That's probably the other reason I don't care about them.

If she does not learn to read and write I won't be sending her up to high school. And I am happy with how her junior school is teaching her.

The spikeyness is not just due to being tired. It really is very random. (and very extreme) But I'm going to try and create a diary for spikeyness and see if I can find out what is triggering it.

FraidyLady do you know who does a detailed hearing test?

FunnyPerson - I'm not sure if this helps, but here's her cognitive profile:

(Numbers are percentiles)

Processing Speed: 15 (This has vastly improved. It was a lot worse)
The ability to perform cognitive tasks, particularly when measured under pressure to maintain focused attention

Working Memory: 51
The ability to hold information in immediate awareness while performing a mental operation on it

Auditory Memory: 39
The ability to hold auditory information in immediate awareness while performing a mental operation on the information

Visual Memory: 49
The ability to hold visual information in immediate awareness while performing a mental operation on the information

Long-Term Memory: 58
The ability to store information and fluently retrieve it later in the process of thinking

Visual Processing: 68
The ability to perceive, analyze, synthesize visual patterns, including the ability to store and recall visual images

Auditory Processing: 1 :(
Phonemic Awareness, the ability to analyze and manipulate speech sounds; crucial underlying skill for reading and spelling

Logic & Reasoning: 98 (The EP also said her 'cognitive abilities' were in the 98th percentile)
The ability to reason, form concepts, and solve problems using unfamiliar information or novel procedures

Word Attack: 12
The knowledge of and application of sound codes in order to pronounce unknown words

Indigo, I really think you should have a short break in Scotland to see Ian Jordan. At least phone today, see if you can have a chat with him on the phone about things, see if he thinks he can help.
Have found these for you, not sure if you've seen them before...

www.squidoo.com/auditory-processing-disorder#module151088057

www.facebook.com/#!/pages/Auditory-processing-disorder/105635286136098

Also, this is the program that friends DD did, and her APD was severe, like your DD's.
The research behind this is very good, it teaches the brain to recognise new phenomes. It's very intensive but I've heard some good results.

Doh! Forgot to add link.
www.neuronlearning.eu/index.cfm/page/viewArticle/rId/5/aId/23?_kk=auditory%20processing%20disorder&_kt=e79fc180-e3cf-4792-8ffc-b7407f7d6a46&gclid=CMC9qoXCnKwCFcMOfAodqGHuAA

paranoid - thanks, those links do help.

I've discussed it with DH, and we have decided to try and get a referral to GOSH. I don't actually think DD has APD. I think she has auditory processing problems, which is one of the symptoms of APD, but I don't think she has most of the other symptoms of APD, and I therefore don't think she has it.

However, it won't really hurt much seeing GOSH (if we can - big if)

I've been a bit reluctant to try FastForward, because she's done AIT (which helped a lot) and I'm not sure if it's OK to do both of them, plus a well known very depressing poster is very critical of it. So it really helps to hear your positive story about FF. I'll ring the London Provider of it and discuss it with them, as well as discussing it with the person who did AIT on her.

So, thanks for all your support and advice. Given me lots of ideas.

I have so many things I want to try next, it's hard to decide which one to choose :)

Just wanted to say she seems to still be winning ground, even though you're feeling the effects badly of a dip at the moment. Also wondered what your reasons were for going for that particular version of auditory treatment? And is it still work in progress?

As you know, I went for another version; one of mine didn't need it, another only a little work, and the third took a long long time and much tinkering, the last bit was really frustrating to crack. It made a world of difference, and reduced the issues to visual, which for us is the next battle to win.

Sattva - I forget which program you went with?

AIT only takes 10 days. So it's finished. It's not a work in progress.

And it has made a huge difference. She would not have made any progress last year at all without doing AIT.

I went for it because a friend of a friend had had good results with it - So basically a random choice (plus the fact it was only 10 days) :)

Have just PM'd you!

Indigo - with me, I've noticed this child can change from doing/not doing something in the space of an hour, so unlikely to be diet. Mum told me that one day she could, one day she couldn't so can change from day to day too!

Sarah :- does she get less able to do/spell things as time go on, or is it at 10 am she can't read something but at 11 she can?
I ask because my son (at senior school) produced a piece of writing in Science with one specific word in it several times; first time it was spelt correctly, second and third it was spelt phonetically, final time it was spelt in a very bizarre way although as I had read it before eventually I could decode it (it was vaguely phonetic but split into two words, like someone who didn't speak English might have written). This variation was due to increasing tiredness, and time pressures.
Actually if it improved at 11 am, I would suspect that break time had had a positive effect on releasing tension etc.

Hi Indigo

We are finding with the children that I work with that attention and working memory are very much a moveable feast.

One day/ hour/ minute they can have sufficient attention and access to their working memory to apply previous learning to a task (like reading) the next not.

We find medication for ADD can help with the attention- your DD may not be ADHD but may come up as ADD. That can be harder to get a decent dx for as it doesn't score so highly on a Connors etc.

We are still investigating the vagaries of the degree to which the children can access their WM at any given moment. Many things seem to cause peaks (motivation, lack of somatic distraction, support with sensory intergration- like coloured lenses, physical pressure) and troughs (stress, still processing information from earlier, emotional arousal etc).

We have a fab OT who is coming up with all sorts of strategies to support sensory modulation in order to give the kids the best shot at keeping their working memory 'up and running'. We are also trying to ramp up their base level of working memory using a daily programme including amongst other things a piece of software called Cogmed

A very quick (and completely unscientific) check that we use to guage the kids WM at any given moment is just to see how many pieces of information they can reverse e.g. if we say blue, green, red can they say red, green, blue.

Might be worth seeing if your DD's ability to do this type of task is varying day to day and whether it has any correlation with her 'spikes'.

Sorry Indigo, I'm not sure who did the test, but they ended up with some amazing graphs that identified exactly the sounds she was having trouble hearing, which correlated (exactly) with the sounds she couldn't enunciate. We ended up with a Multi-agency provision plan, and regular auditory support (including in-school equipment such as microphones for the teacher, lap-top allocation, etc).

I really couldn't believe that this wasn't found earlier.

FraidyLady - thanks for that update. I am going to try and see if I can get her referred to GOSH - but am not holding out much hope :)

Although DD doesn't have any problem pronouncing any sounds. So it doesn't sound quite the same as your student.

EBDTeacher - That info is all very interesting and helpful. We were convinced she had ADD, but no longer think so (although, of course I could be wrong).

That test for WM would work - and is pretty much how an EP tests WM. Need to talk to school and see what they can come up with.

Are you suggesting school should test her WM before doing 1:1 with her, and if it's low then do the 1:1 some other time?

I have thought about Cogmed. Do you think it's helping?

Don't forget attention deficit is not just about difficulties maintaining attention. It can also show up as a difficulty selecting the right information to pay attention to and starting to pay attention to that info (cuing), the balance between attention and inhibition (modulation) and the ability to move flexibly and appropraitely between attentional foci (shift). Attention is about so much more than just 'concentrating' and a child can look like they are concentrating perfectly well but still not be paying attention to the right things. (I'm really sorry if I'm teaching you to suck eggs there- you sound knowledgable about this field- I just know it's a common misconception).

We wouldn't expect to get much learning from a child who was unable to access their WM to much of a degree. However, rather than looking for times when their WM was functioning at it's best and teaching them then we would seek to understand what factors were placing a load on their working memory and attempt to modify their environment to ameliorate it. We can't always do that because many factors (such as issues from home) are beyond our control. Your DDs school may also find this a difficult tactic as they are a school!! Our children are taught 1:1 in a specialist facility.

We have found using a programme to improve WM to be effective. Improvements in WM have definitely contributed to an increased rate of learning in several children. We like cogmed. We have some issues with it being rejected (our children have severe and complex behavioural difficulties) but I think where it can be done consistently it is a useful tool (amongst other WM expanding excersises- not considered a magic bullet on it's own as the creators would have you believe!).

Forgot to add:

If I was going to use a computer based programme at home I might be tempted by Lumosity. We trialled it and liked some of the games. We can't afford it in school or I think we would have used this as part of our armoury.

Hi,
I've read this post but not your earlier ones so please excuse me if I have missed some important details. I am an experienced primary school teacher, I've taught in foundation stage, key stage one and two and also in special schools. I also have dyslexia. My writing at 8 years old was very similar to your childs, I was given extra support, special pencils, endless eye tests and coloured plastic to read through. None of this made any difference to my spelling or reading. I took the 11 plus and failed miserably. As an adult I still cannot spell, I find it difficult to retain written information in my head, I can get confused over the time etc etc. None of this stopped me attending Cambridge University and getting a 2:1 in my degree (in English Literature no less!) It has not hindered my career. I have learned to work around it.

Looking at your daughters cognitive profile it seems clear that she does not have 'special educational needs' 'learning delay' or any of these other labels. Such a large difference in auditory processing and logic and reasoning suggest that she has a specific impairment with auditory processing (dyslexia). Functionally, what this means is that your child's brain is 'normal' they are able to process and contribute to the world in the usual way BUT a small area of the brain has been impaired, in this case the part that deals with remembering and reproducing letter patterns (as your child can produce these sounds, it is very unlikely that hearing is the problem). There is no way to 'cure' this BUT there are many skills teachers can give your child that means this does not need to be a problem in their life. The teacher's job is to equip your child with all the skills that they need to achieve the same as their peers reguardless of their impairment. This will take time. Sometimes it seem like children make masses of progress and others very little seems to help. It will take your child a little longer to get there than some others BUT THEY WILL. Have faith. I panic every September that this child and that child is not going to progress and THEY ALWAYS DO!

Lastly, your child's teacher is EXPECTED to track your child's progress very closely. The school HAS to make sure that your child succeeds and is given the very best chances. Seriously, most of us got into this career to see people like your child suceed but on a very base level, our pay is determined by what our children achieve so beleive me when I say the teachers at your child's school care almost as much as you do!!

I hope some part of this can be helpful. Apologies again if I have missed the point! oh, and excuse the spelling!!

EBDTeacher - no, I didn't know that ADD could be about paying attention to the wrong thing. That does help.

Challenging Our Minds is the cheap, at home, version of CogMed. I am tempted by it. But there is also BrainSkills and Lumonisity.....

But I think (based on this thread) I have decided to do FastForWord next.... Which should have the biggest impact on her auditory skills.

Then after that I might try one of the cognitive training problems.

k8ttb - thanks for your comments. You haven't missed the point :)

This thread has given me loads of ideas, and loads of energy.

What I'm going to do nextish is:

• Research FastForWord a bit more and make a decision about it
• Ask the GP for a referral to GOSH
• Get a private nutritionist to test her for everything
• Talk to school about trying to work out what causes her spikyness

Thanks everyone for all your help and support.