Wednesday, May 9, 2012

Suggestions for a way forward?

Over the years I've written quite a lot about Joel's issues with reading and spelling. I've fluctuated between hope, sadness, frustration, excitement, joy and despair. As a university educated parent, it is confronting to have a child with a learning disability. To think that the world in which you live is one that may never be open to him. It's especially painful when you can see that he would fit so well into that world. He has the desire to be there and ideas to contribute - just not the keys to unlock the door.

The middle of last year was a turning point for Joel. We were always told that he would need to learn to read in his own way and that he would work out how to do it when he wanted it enough. Ten months ago, thanks to the Percy Jackson books, he wanted it enough. He went from reading as little as possible to reading constantly. He has a bookshelf that he's proudly labelled 'books I've read'. It contains all the Percy Jackson books (5), the sequel Heroes of Olympus series, the Harry Potter books and the dystopian GONE series that he's currently working through (we bought him #5 this afternoon.) Library books aren't good because you can't keep them.

People ask if his comprehension is okay. In answer, yes. It is very, very good.

Sometimes I allow myself to think that his issues are in the past. Then something will happen to make me realise that they are not.

Joel got a D for his first major English assessment piece this year. It was a persuasive essay. The content may have been fine but the spelling was so bad that the teacher couldn't read it.

I proofread Joel's second major piece of English assessment. A narrative. I was very careful to make sure that I did nothing except correct bad spelling (70% of words) and add full stops and capital letters. He got an A.

So Joel's issues primarily exhibit in spelling now. But base level spelling is really important. Your words have to be discernible to others or at least to word's spell-check. The spell-check doesn't know what to do with Joel's writing and teachers certainly don't. Unless we can get it under control he will not pass any subject (except maths) in high school.

So we are looking for a way forward.

My speechie friend has told us about the assessments that they do.
My friend with a learning-complicated ASD daughter told us how a DAS assessment has helped them.
We've had a WISC before and are having it again (because the school lost the report with the details on it!)

Apart from the WISC, I'm not going to rush into anything. Before I make up my mind which way to go (we have to do something) I want to be convinced that whatever we do will yield results for Joel. He doesn't believe that anything can help him spell better. And certainly nothing at school ever has. Ideas?

He really is complicated. We were chatting this afternoon about the book he had just finished. I looked through it and asked him what a pile of tricky words were. He could read them all.

I was curious so I put these non-words to him, one at a time.


- pothouse

- nosegate

- toothfairy

- joelosaurus

He could not read them. Not any of them. Not at all. Not even when I told him that each word was made up of two words crashed into each other. His could pick his name at the beginning of the last one, but still had no idea what the whole non-word was.

For Joel, reading is a non-phonetic activity. He gets to know words by their shape. When he encounters a new word in a text, he works it out based on the context and the beginning two letters and maybe the final letter of the word. Then after that he knows the word for next time. The middle letters contribute nothing in working out the word initially, but are useful in making the word distinct from other words so that he can recognise it in the future. Lots of letters make it longer. Letters with tails or flags will make it a taller or droopier word.  

Is it any wonder that Joel can't spell?

How do you teach spelling to a child who reads like that? When he's writing, he just makes up the middle letters of the word! He developed his own way of reading, not out of perversity but because his brain's slow processing speed could not decode words phonetically. So is it likely that teaching him to spell phonetically would work?

Psychologists? Therapists? Any suggestions? Are you usual methods likely to work in this case? I'm after advice. Joel goes to high school in 18 months. I feel like time is running out.


35 comments:

  1. Ouch. Is a medical diagnosis to authorize the use of verbal recognition software a possibility? He 'write' his exams by speaking into a computer? "Solve" the problem with technology?

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    1. Long term that's probably what he'll do. But I know how the school system works. His WISC assessment actually showed him to have a disability but that hasn't made any difference yet functionally. Because he is coping (i.e.. mostly C standard or near it) it's seen as unfair to give him extra consideration. It's like clever kid with a hearing impairment not being allowed written instructions since she can semi-make out + kind of guess what the teacher is asking and get Cs that way. Grrr! Very few teachers 'get' that he could be achieving far more.

      Also, Joel hates anything that makes him stand out.

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    2. hmmmnnn. At the risk of mentioning He Who Must Not Named, if the schooling system is that inflexible in this instance, there is the possibility of home schooling. That gets around the problem until he's closer to adulthood, at which point people stop seeming to think that 'C' is sufficiently okay that we don't need to provide extra assistance to enable the true potential to be realised. It also means he doesn't go through four or so potentially very discouraging and frustrating years.

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    3. I was expecting this response! (Asking for it?)

      If schools can't cater for tricky kids then schools need to change so that they can. Withdrawing Joel isn't the answer. Advocating for him for his sake and for the sake of those who will come after him is what needs to be done.

      There is plenty of good stuff at school. If he didn't go to school, who would tell him which series of books he needs to read next? (He has a good friend who points him in the 'right' direction!) And there are music lessons to be had at school. And lunch times.

      Besides, without school I'd have to teach him myself! There are lots of awfully boring parts of the curriculum I'd probably want to leave out. (Like science (except for space and volcanoes), anything to do with sustainability, any PE that involves a ball, and spelling.)

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    4. It certainly wouldn't be a silver bullet. Like anything you'd have a cost/benefit to weigh up. Merely putting the idea out there. There are conceivably a whole bunch of good reasons to not go a homeschooling direction - especially if Joel hates anything that makes him stand out.

      As someone who was almost the archetype of the tricky kid, I'm not sure I agree with you that schools must be able to cater for all tricky kids. I think that puts an unreasonable burden on teachers. But that's no doubt a philosophical difference between us - I think no matter what structure you create it will cater for some and not for others. You can't cater for everybody simultaneously in the one structure. It's a denial of our human particularity, in my view.

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    5. Mark - I can't find your email address. Can you come over for dinner? We'd love to meet your boys.

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    6. Love to, thanks for the invite. We're consumed by our forthcoming move into our new house this Sat at the moment, but we'll get in touch next week to line things up.

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  2. I'm so sorry to hear you guys are still struggling with this. I thought your more recent posts about it sounded lots more positive but obviously there are still issues.
    And I'm not sure I have too many suggestions to offer on a way forward. It's been a long time since I worked with big kids, and I'm pretty sure my experience with toddlers and preschoolers isn't much help...:)
    I think your plan for a repeat WISC sounds good. And I looked at the DAS link you put up too. I think something like that looks like it could be worth a shot. It would certainly give you a comprehensive profile of strengths and weaknesses. Is there a private psychologist who can do it or are you just using the school G.O.? You've seen an OT previously too, haven't you? How long since you've seen them, and what did they say last time?
    Technology solutions might help. OTs sometimes write reports to advocate for kids having a scribe in exam situations, although mostly in my experience that tends to be for the slow handwriters rather than kids with severe spelling issues, so I don't know how you'd go with that... And I like the idea of the verbal recognition software, though I haven't heard if that's getting any attention in the OT or SP world. It might not solve all the issues but could help with some of them.
    Will pray too that you find some answers on what the next step is.

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    1. We saw the OT first up. Joel was almost 7 then. She gave him stuff for poor fine-motor skills and visual processing issues. She was the first to show us that Joel was incapable of copying from the black board. He couldn't hold stuff in his head for long enough to look from the board down to the paper. She also wrote a letter to our G.O. saying that she thought he would be very 'interesting' to assess. We got an assessment because of that.

      Because of cost, I'm keen to use the G.O. if I can.

      Thanks. Disability doesn't go away. That's what makes it hard.

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    2. Yeah. Nothing like this is ever a quick fix :(

      And I think it's even harder because to all outward appearances, he looks normal. And eventually, he'll be able to function in the world in his own way. It's just that before then comes high school and university...where finding the right help can be a bit hit and miss.

      Hope the GO at your school is familiar with the DAS if you're going to go through them. I'd never heard of it before but it did look interesting in terms of the areas assessed.

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  3. I look forward to hearing other's suggestions as one of my boy's is a great reader, good comprehension but his spelling is crazy. He will put letters in the middle of words, that totally don't belong there, and even though I suggest he sounds words out after he's written them, it doesn't help. And so similarly, his brilliant stories look like gobbledegook. However if I spend ages with him doing his spelling words, making him write them out repeatedly, he can sight learn them.
    So heres hoping there is something out there that wil help....please share if you find something that works!

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  4. I was reading an article recently in either Aussie Kids about a similar problem. http://www.aussiekids.net.au/articles/0/143/
    It is basically a company advertising their Reading clinic but it may have some answers for you.
    Going through diagnosis and OT for 3rd child at the moment so I somewhat get the searching for answers problem.

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    1. I've looked into that kind of stuff before. Tried two similar things. No good for us.

      Good luck with your #3. What's going on with her?

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    2. Short story is Sensory Processing Disorder. I have been at my wits end with her for a while. Her complete meltdowns over minor matters and general inability to settle in the presence of large amounts of stimuli lead me to look for answer. I wasn't sure if she was the one who needed help or if with needed to completely change our parenting style. Something needed to change. I feel terrible saying it but I was getting embarrassed to take her certain places. Things seem to be a bit better when I do the recommended activities so hopefully we have a way forward.

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  5. I don't have specific answers, but I would highly recommend that you check out SPELD if you haven't already (www.SPELD.org.au). They are running Workshops in Brisbane on what dyslexia friendly schools look like. Might be helpful?

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  6. Also, if you do want to conduct some more specific tests (no assumption here), there are some good dyslexia specific cognitive tests for free at motif.org.au The Castles and Coltheart 2 in particular might be helpful. Some of the tests you would already know the outcome to, as you have screened for this already (e.g. The diagnostic reading test for non-words).

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    1. Thanks Aimee. I'll look at those tests.

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  7. Oh, I am sorry to hear of those struggles. It is so hard to watch and feel helpless. You mentioned at the end of your post that Joel has slow processing speeds. Is that measured? I am not a huge expert, but our Lola was diagnosed with severe auditory and moderate visual processing delay (auditory was at 700ms/s instead of 20-60) which had affected speech, reading and spelling (!) to a significant extent. She was passing at school, but spent a lot of time making good guesses in order to get by - and she was just getting by, even though she's bright. Anyway, we have done SAMONAS listening therapy with her and it has made a big difference. She improved nearly 2 years reading age in her first 6 months of therapy. She got excellent marks on her end of year report last year. It has been a bit tricky here in Chile, a long way from the therapist, but still doable. They say it restores processing speeds (and the improvements are maintained). Happy to send more info if you haven't heard of it or tried it. It is considered a bit alternative, but might be worth a shot. Certainly worked for us. Praying for God to help you to think wisely about the tricky situation, and to keep loving him well, as you are. Jo C

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    1. Joel's processing speed was measured in a WISC assessment - which is a kid's IQ test. He sits on the 16th percentile for processing speed (working memory - 42nd, Verbal comprehension - 97th, Perceptual reasoning - 90th).

      Fascinating therapy! My friend tried it with her son and was really pleased with the results. I'm not sure it would work for Joel, but will throw it in the pot of things to consider.

      Thanks for your prayers.

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  8. I'm so sorry that this continues to be such a tough issue, Simone. No advice, but I just wanted to say that one of my best students over the past few years was a mature-age student who had always thought she was stupid. She came back to Uni after retiring and was assessed as dyslexic. She writes all her essays and exams using voice recognition software and gets straight High Distinctions. I do think universities, at least, are quite good on disability support now - the Uni provides her with a note taker for lectures and the software plus special exam conditions etc.

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    1. Mum has said that too - that universities are great with disability support. It's getting there that we are worried about!

      What a shame that your student couldn't have started earlier.

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    2. That's an amazing story, Joanna. Thanks for sharing that...some days I think I could quite enjoy a job working as an OT in disability support at a Uni. Those kinds of stories make it sound very rewarding!

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    3. Yes, it was such a privilege to work with this lady. But she was of a generation where there was no special needs support and very little awareness - she left school as soon as she could.

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  9. Is his spelling near enough that a computer spell-check would help? I had a dyslexic boy once who used this. We still worked on his spelling in other ways, but the spell-checker was a functional solution which enabled him to communicate his ideas well and helped limit his frustrations.

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    1. No. Not near enough for spell check yet! My aim for us it to get to the point where it would be.

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  10. I'm so sorry that this continues to be such a tough issue, Simone. No advice, but I just wanted to say that one of my best students over the past few years was a mature-age student who had always thought she was stupid. She came back to Uni after retiring and was assessed as dyslexic. She writes all her essays and exams using voice recognition software and gets straight High Distinctions. I do think universities, at least, are quite good on disability support now - the Uni provides her with a note taker for lectures and the software plus special exam conditions etc.

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  11. Hi Simone,

    I haven't read all the comments, as there are too many. I am not a teacher and not a health professional. Take everything I say with a grain of salt.

    I have one child who reads well but spells terribly. People tended to say as children read more they'd pick up on their spelling. This has been true for one child, but not the other.

    For the first three years of school she would get every word wrong in a spelling test (that's every word). That has changed this year so I hesitate to say much more as there is obviously more going on in for you. But... can music help? Can you teach words through song? I mention this because last year my child was working on "own" words and they were always wrong. But one day she came home having learnt a song that ended with "D O W N down" and then she didn't look back on the "own" words. No idea who taught her the song or why but it was great for those words.

    We also would recite the spelling list together, "make, M A K E, make" as she could remember aural cues but there is no way she could remember to spell visually, just writing out the word had no impact whatsoever.

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  12. As a homeschool parent of boys with spelling issues I can tell you that I've been there and done that with a lot of things. We have some software which has been very, very good and I can recommend for poor spellers. I have a word prediction software program which works with Word and also a spelling program which has helped too. I'm happy to have a chat about what has helped us and give more detail about the software (one of the programs is endorsed by SPELD - mentioned above). Wendy has my email address/facebook link and can pass them on to you if you'd like or just email: anikamum@gmail.com. One other point I would make is that it is really, really important to get a good developmental optometrist to check his vision. I had one of my sons checked with a regular optometrist for years then went to a great one who picked up a massive problem which affected his ability to transfer writing from one page to another.

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  13. Have you looked into these people at all? I believe they have Australian options. I am a total ignoramus on the topic so it is just a suggestion. But the woman who founded this school initially had significant learning difficulties and couldn't read. They have a computer training program called Fastforword or something, which has helped a lot of people it seems (and curiously, their brain-processing training programs have had unexpected parallel results on behavioural/social problems also - not that Joel has those).

    http://www.arrowsmithschool.org/arrowsmithprogram/index.html

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  14. So many suggestions, Simone, you'll have heaps to look into from all of this! Just wanted to add, be very cautious with any program that claims to fix things in a very short period of time (usually these tend not to have great evidence to support them, or studies have been done without controls or only with convenience samples etc etc). But I'm sure you're already aware of that consideration...there's so much out there that it can sometimes be tricky to sort the good from the less good...

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  15. Thanks for posting and being honest about your son's literacy issues. I actually find it fascinating that he can learn all the words but then not get the compound words. There is something amazing about the brain that it can do one thing and not the other.. Unfortunately I have no experience in the area and hope you are able to find some way forward.

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  16. Hi Simone,

    I've been a silent guest at your blog for a while now but I can't help but put my two cents worth in on this one.

    As a speechie who works with school aged children, please consider seeing a speech pathologist who specialises in literacy/phonological awareness. Obviously it's difficult to comment on a case without all the information but what you are describing is their bread and butter.

    You could try some private speechies (just make sure they are registered with the SP board) otherwise you could get in contact with the UQ Speech Pathology department as they run clinics using the Phonological Awareness for Literacy program (PAL) which has a good evidence base and is widely used across Queensland. I'd also highly recommend voice recognition software.

    BTW I'm not aware that many school GO's are trained in the DAS II and wow, that's really poor that the school lost the original...

    You've got a smart cookie on your hands! Hope you find that combination of strategies that will help him succeed in high school and beyond.

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  17. Hey, Simone, I have no advice at all (despite being a Year 6 teacher!) but I wanted to say that your post was a real encouragement to me. It reminded me, in the middle of a personal pity party, that lots parents have kids who refuse to fit into the ordinary. And that it is my job to get on with it instead of moaning. I needed to hear that this week.

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  18. Hi Simone, I used to work as a Speech Pathologist, specialising with adults who'd had strokes. That was 6 years ago now and I have no idea what's been happening in the adult or pediatric fields since. But when it comes to adults, strokes can cause all sorts of strange impairments, depending on their precision and location. Some speechies who work in this area base their practice on a 'psycholinguistic model of language processing'. This is a hypothetical model which tries to capture how we manage to understand written and spoken language, and speak and write meaningfully and accurately. It's put together from clinical and research findings which tell us what is and isn't possible for normal and damaged brains.

    The reason I'm telling you this is that, when I was practising, it didn't seem to be something that had really been developed for clinical use with children - and I always thought that was strange and a pity. Maybe that's all changed now, I don't know. *But* I do know who would - Lyndsey Nickels, a research neuropsychologist with Macquarie Uni. She is the absolute guru in Australia for this stuff. She may not have the time to think through your son's presentation herself, but hopefully she'll be able to direct you to someone who can. This is her webpage - http://www.maccs.mq.edu.au/members/profile.html?memberID=63

    (In the meantime, the only thought I had was I wonder if is it possible to increase the accuracy of Joel's visual recall of words, so he can hopefully get enough letters right to make use of spell check...?)

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