I think he has dyslexia -- where to start?

[SeaConquest]

Ronen is my younger child. He will be 7 in August. You may recall me posting in the past about Sacha, my older son, who is profoundly gifted with ADHD. So, Ronen is very very bright, but has never been as naturally attracted to schooly things from a young age as older brother. He loves listening to audiobooks, loves gaming, loves hands on stuff, loves art. He is doing well in math -- probably 2nd grade level without much effort on either of our parts. Our issue is reading. He is still not there. He knows his letter sounds, but he is still struggling to move much beyond basic CVC words and two-letter blends. He is still sounding out words like cat after two years of doing this. It's just not clicking. It's painful for both of us. And, he's so bright. Something is just not adding up.

He was in speech therapy at age 2 because he used to make these very long, but unintelligible sentences. And I know that kids who struggle with speech tend to be at greater risk for reading issues. I've been using Progressive Phonics and the All About Reading Readers with him. We've also used Reading Eggs and Learn with Homer. We are going on two years of reading instruction, after 3 years of the Harvard of preschools in our area (he knew his letter sounds at the end of preschool), and I feel like we have made very little progress. Like I said, my mama radar is telling me that something is just not right. Where do I go from here?

Normally, I would request an IEP meeting and complete eval from his charter school to figure out what is going on, but due to CV19, the school is closed for the rest of the year. I really don't want to wait until the fall to help him, so I am hoping that the experts here can point me in the right direction. We do not have the funds to pay out of pocket for a tutor, so it has to be something that I can implement. Thank you in advance for any assistance that you can provide.        

Edited April 21, 2020 by SeaConquest

[PeterPan]

27 minutes ago, SeaConquest said:

He was in speech therapy at age 2 because he used to make these very long, but unintelligible sentences.

So the trick is to figure out whether there's a reading disability due to phonological processing (dyslexia) or whether that's that PLUS MORE going on. And the plus more I'd be asking about would be language issues. Just being straight. 

So what you can do today, on the cheap, immediately, is the Barton screening tool https://bartonreading.com/students/#ss  All it's doing is seeing if he has the basic phonological processing and working memory to succeed at ANY OG based program. Takes 10 minutes, give you a dab of info. Not a diagnosis, just a big red flag and a place to start. They can pass this and still have dyslexia, and nuts given the amount you've done let's HOPE he passes it.

The challenge with ps evals is they lick and promise and basically just screen speech/language issues. So they'll run something like the CELF (a largely multiple choice test that misses issues in a lot of gifted kids who, no shock, excel at multiple choice or when given models) and not do the deeper tests like the TNL or SPELT. 

So what you might consider doing and see if you can get access to right now even is an SLP who specializes in literacy. This breed of SLP should own the CTOPP to get you some data there, probably can do some reading achievement testing, and should own testing for narrative language, expressive language, and other stuff. Also they sometimes work under a psych to help funnel that data into full evals. Win win. And they bill for less and might have immediate availability and might be able to do that testing via tele.

For my ds the phonological processing difficulties were there, yes. He also failed the more detailed tests like the SPELT. And for him, it was all intertwined, ie. working on language improved reading, and working on phonological processing improved his ability to learn language.

So yes, you definitely have an issue. Yes, not knowing the word when you've worked on it 20k times with full understanding is just textbook, classic dyslexia. But, you know, start somewhere and maybe make sure more is not going on. Ironically, even a $$$$ neuropsych eval won't get you that detailed language testing. They'll just run the idiotic CELF and say you should shut up. So see what you have coverage for, but those are two places you might be able to start right now. And I agree you want something, yes. 

If he fails the Barton screening, the results will indicate what to do. If he passes, well then let's sort that out. You can report back with the results. And either way, getting a baseline CTOPP before you begin therapy level materials is just cover your butt wise. My ds made HUGE jumps once he got in therapy level materials. He was still diagnosable, but still it was good to have baselines.

Ok, I see go easy on the budget. Well the screening tool is free. Start there, report, and let's just see where it's at. Do you have insurance coverage for SLP services? Have looked around for a good OG tutor? Around here, there's a practice that does OG and they will run a CTOPP and achievement for $75. So who knows, you might have an option like that too.

[Terabith]

Agreeing with PeterPan.  I'd do the Barton screening and if he passes it, I would start with Barton 1.  If he doesn't, I'd do Foundations in Sound.

I think in a perfect world, an evaluation with a CTOPP before intervention would be good.  But, it's not a perfect world.  I think it makes sense to see if you can get through Barton 3 or whatever and then see where you are.

[PeterPan]

Just now, Terabith said:

I think in a perfect world, an evaluation with a CTOPP before intervention would be good.  But, it's not a perfect world.  I think it makes sense to see if you can get through Barton 3 or whatever and then see where you are.

So to take it a step further, the main reason to push push for diagnosis (or the baseline that makes it grossly clear on the diagnosis) is because you want BARD/NLS access. If you're just saying ps, it won't matter. They're gonna do that IEP eval in the fall and just deal with where he is at that time. And my ds was diagnosed by a ps psych *after* going through LIPS and Barton 1 and 2. We've had other people say the same thing. 

So if you can make it happen easily, like by getting the SLP to run it via tele or finding a reading tutor who can do it, boom. But if not, yeah I agree with plowing forward.

[kbutton]

You might also see if he has an auditory processing issue once things open up again. A sizable number of people with dyslexia have auditory processing issues too, and they are similar but have a different basis. An audiologist who has an interest in these things can parse out and explain some of the differences (particularly if they understand dyslexia too). My son has both. His dyslexia is more stealth. His APD is really pigeonholed--super low functioning in areas that are on the "optional" part of the test. It used to be broader, but some of those issues finally resolved (like hearing is noise--it's much better; at one point, he was functionally deaf in a noisy room). 

[ElizabethB]

The PAST test is good for phonological awareness screening.  If there are any that he can't do or that take longer than 2 seconds, buy his book, equipped for reading success, lots of good exercises and info about phonemic awareness.  With the PAST test, you can repeat the question but no hints, part of the test is if they can figure out what part of the word is being talked about.

https://www.thepasttest.com

Book from the reading league: https://www.thereadingleague.org/shop/equipped-for-reading-success-2016-book-by-david-kilpatrick/

From Amazon:

https://www.amazon.com/Equipped-Reading-Success-David-Kilpatrick/dp/0964690365/ref=sr_1_2?dchild=1&keywords=essentials+kilpatrick&qid=1587435897&sr=8-2

Kilpatrick is giving a lecture about phonemic awareness for a $10 donation to The Reading League, and a few other lectures by other people--it was going to be a live conference, now online.  

https://www.eventbrite.com/e/the-reading-league-symposium-were-all-in-this-together-registration-102174631072

 

[SeaConquest]

So, we finally did the Barton screening today. I really thought that he would have no trouble with A and B and struggle with C. It didn't go well all around. I think partly because he is a fidgety 6 year old boy who wanted to get back to watching his shows and partly because he despises anything related to reading at this point. He failed A and B, and was feeling so badly about himself that I didn't even bother with C (even though I know that she says to administer C). It's probably my fault. He wanted to know what we were doing, so I told him that I thought that he was struggling with reading because I think he might have dyslexia. I told him that lots of smart people have dyslexia, that just like his brother, papa, and mama all have brains that are wired a bit differently, he probably has one too. So, we were doing a screening test so that I could see what would be the best reading program for me to buy for him going forward. He thought I said a screaming test, which led to a hilarious convo about a Harry Potteresque screaming test that would scream at you if you got the answer right or wrong.  Anyway, at the end of each section, he wanted to know if he passed and I didn't want to lie to him. Ugh. Plus, I know that he really just hates what we were doing (testing), hates reading (because he is sensitive and feels demoralized), and wanted to get back to what he was doing (watching videos on his device). So, all around, not a recipe for success. 

[PeterPan]

12 minutes ago, SeaConquest said:

He thought I said a screaming test, which led to a hilarious convo about a Harry Potteresque screaming test that would scream at you if you got the answer right or wrong. 

Ok, I LOVE this. I haven't even read HP but that's hilarious. I need a screaming test today.

I'm sorry the screening didn't go well. It happens and we knew it might. Sigh. But it's still traumatic.

13 minutes ago, SeaConquest said:

Plus, I know that he really just hates what we were doing (testing), hates reading (because he is sensitive and feels demoralized), and wanted to get back to what he was doing (watching videos on his device)

Ok, I'm just gonna say this. My ds is a pain like that with trouble shifting, and it's part of what pushes into an ASD label. So that to me is a little, well there are stuff to keep your eyes on. That's all. He does sound wicked bright, wicked sensitive, like you can't pull anything over on him. You're definitely doing the right thing moving forward. So crazy question and maybe you already said. Is this something where you want to *outsource* or are you wanting to do the intervention? What's the plan. 

And remind us, has he had his hearing screened? And is there any family history of ADHD or anxiety? 

You're going to get good materials based on the screening. Are you thinking LIPS or FIS or something else? And did he have speech issues? I think if you can consider balancing the mental health issues (meds for ADHD/anxiety or maybe some Zones of Regulation and some self-awareness strategies for dealing with what he's feeling), that will make the intervention go better no matter who does it. I'm not saying what he needs, just saying the more you do to get him really calm and in a good place mentally to work, the better that's gonna go. So make sure of the hearing, thinking through the ADHD/anxiety issue really honestly, and go cognitive (Zones of Reg, mindfulness, etc) for whatever is left.

Our local, SUPER AWESOME dyslexia school uses Zones of Regulation (among other things) for ALL their kids. They have a time every morning and they go through this stuff with emotions, social thinking. They keep bins out with the tools and use them liberally. They have different kinds of workspaces and encourage breaks and encourage ADVOCATING for breaks. So working with the emotional health is just as important as the academic. They'll be in tandem. And I have the impression you're kinda crunchy and already into some of that. Just keep doing it then or go farther.

Are you wanting opinions on LIPS/FIS or you have another plan? Do you think anything was confounding the results or do you feel confident going forward with an intervention? And what were your options for snagging a baseline? You don't have to, but if you can easily it would be nice. An SLP who specializes in literacy, a tutor, anyone with a CTOPP lying around.

[PeterPan]

22 minutes ago, SeaConquest said:

he wanted to know if he passed

That's where I woulda lied and said he passed right into LIPS/FIS and doesn't need to do (insert name of well known preschool whatever). 

That's really hard that he's catching on that he's struggling. My ds was completely oblivious, sigh. And I don't know what to do about that. Mental health all the way. I mean, I lie. I took my ds to meet someone with significant autism and told him I was taking him to meet someone brilliant. It was also the truth, but it wasn't a normal way to spin it. And I'm pretty much in the disability sucks, this is not romantic camp. But it's just our mix. I think getting him in the loop of successful people who struggled is really wise. I watch a lot of videos like that with ds. I still do. I'll just haul him in and have him watch some more youtube clips. We watch a lot of Shark Tank, and multiple people on there are dyslexic. They say it's their twist that makes them more insightful in business. Branson with his new Scarlet Lady ship is dyslexic. Now maybe it will flop, but what a big, creative move! We like cruising now, so he can relate to that. And I give him tech and I just get pissy like ear reading is as normal as eye reading, it's all normal, they made billions doing it their way and you can do it your way. But it involves a certain amount of lying, sure. Most of the world is not so accommodating until you stand up for yourself, sigh.

[PeterPan]

Fwiw, I'm big on tech. And maybe it will be a downfall but I just tried to get honest like this is where it's going, we're going to normalize it, and that's it. So he has BARD, siri, dictation, anything he wants, any device. He's always had that access and always been told it's ok any way (eyes, ears, dictation, whatever). 

I think there's sort of a psychology to it. Ben Foss talks about that, about channeling your energy. He's a big proponent of ear reading and normalization of tech, just getting over it and say I'm hip, I might have dyslexia but it means my tech is better than yours. Sometimes tech is status, haha. 

So I don't know, it's just a thought. Maybe drown your tears with some tech purchase. Ask him what he'd like, what would remove some barriers for him right away, and just give him access. Open the door and make dyslexia awesome. It's not awesome, but it can be more awesome, less fearful, more doable. He's so bright, what does he want to do and what barriers could you remove to that? It's ok to cry and grieve, since this isn't what you were planning. But that may be your next step after that. Just a thought.

[Terabith]

I think Foundations in Sound is a good place to start.  That said, my kid failed the screening.  We wound up not going into Barton, because ironically her reading took off a week after I gave her the test.  (She has a super weird dyslexia profile; she could rhyme, segment and blend by age 2 and knew all of her letters and sounds at 18 months.  Her phonemic awareness was good enough that I simply never thought dyslexia.  What she was completely lacking was enough working memory to really put all the skills together....until she did.)  We did a weird mixture of Webster's speller and early readers and then she just started reading fluently around 7.5 or 8.  She went from basically a nonreader to about a high school level overnight.  Her spelling never took off, and I eventually got her into Wilson with a tutor, which made a huge difference, but not nearly as much difference as giving her an iphone and letting her text.  Her spelling level improved more in six months with a smart phone at age 12 than it did with years and thousands of dollars of specialized Wilson tutoring.  But....I'd do the Foundations in Sound.  

[SeaConquest]

18 hours ago, Terabith said:

I think Foundations in Sound is a good place to start.  That said, my kid failed the screening.  We wound up not going into Barton, because ironically her reading took off a week after I gave her the test.  (She has a super weird dyslexia profile; she could rhyme, segment and blend by age 2 and knew all of her letters and sounds at 18 months.  Her phonemic awareness was good enough that I simply never thought dyslexia.  What she was completely lacking was enough working memory to really put all the skills together....until she did.)  We did a weird mixture of Webster's speller and early readers and then she just started reading fluently around 7.5 or 8.  She went from basically a nonreader to about a high school level overnight.  Her spelling never took off, and I eventually got her into Wilson with a tutor, which made a huge difference, but not nearly as much difference as giving her an iphone and letting her text.  Her spelling level improved more in six months with a smart phone at age 12 than it did with years and thousands of dollars of specialized Wilson tutoring.  But....I'd do the Foundations in Sound.  

 

See, that's what I am kinda wondering. Am I just jumping the gun? He's one of those kids where everything has to be his idea and he will straight up tell you that he doesn't see any point to learning how to read. He's getting around in the world just fine without it. He knows his letter sounds. Probably not all the sounds that the vowels can make, but we were almost through all the consonant blends in the intermediate books in Progressive Phonics. But, he was still sounding out c-a-t. And I was like come on, seriously? After two years of reading instruction, why are you still sounding out d-o-g? Something is just not right. But, the other part of me is just like, he is not even 7. And is my stubborn child. Maybe he will just not put the effort into it until *he* decides that he is ready to do it, you know? Maybe, I just need to be patient? But, what if he really does have an issue and I wait? I am so torn about what to do. 

Edited April 22, 2020 by SeaConquest

[Terabith]

Just now, SeaConquest said:

 

See, that's what I am kinda wondering. Am I just jumping the gun? He's one of those kids where everything has to be his idea and he will straight up tell you that he doesn't see any point to learning how to read. He's getting around in the world just fine without it. He knows his letter sounds. Probably not all the sounds that the vowels can make, but we were almost through all the consonant blends in the intermediate books in Progressive Phonics. But, we was still sounding out c-a-t. And I was like come on, seriously? After two years of reading instruction, why are you still sounding out d-o-g? Something is just not right. But, the other part of me is just like, he is not even 7. And is my stubborn child. Maybe he will just not put the effort into it until *he* decides that he is ready to do it, you know? Maybe, I just need to be patient? But, what if he really does have an issue and I wait? I am so torn about what to do. 

To be clear, we did NOT do nothing.  Every day for more than two years before her reading took off, we spent time working on sounds/ phonograms, time reading words, time reading connected text, and time using a reading program on the computer (Reading Eggs, Headsprout, Funnix 2).  We spent at least an hour on reading instruction for 2-3 years.  It wasn't dyslexia specific reading instruction, but I had tutored kids in Barton before my kids were born and I used a lot of strategies.  There were also about three hours of reading aloud to her a day, plus audiobooks.  I really don't think she would have taken off without instruction.  I think there was a necessary developmental leap, but I think all the work we had done on skills was what allowed her to put it all together when her working memory got to the point that she could put it together.  And....she has issues.  She has a really high IQ  but even with intensive work, her spelling level is probably a third grade level, but that's good enough for spell check to be somewhat functional.  She reads great, but there was a long period of time where she could comprehend at a really high level, assessed both with multiple choice tests and narrations, even with only being able to decode about one word out of every ten.  I have no idea how she did that.  I spent years making her read aloud, but when she started reading silently and I realized she could comprehend even without decoding, I sort of mostly left her alone for a year and let her get a lot of practice on her own.  At some point she began reading fluently aloud as well.  It's something of a mystery.  

But it was a huge gamble.  She did two rounds of Wilson tutoring:  first through the public school in second and third grades and then privately through the autism school for fifth through seventh.  (The teacher who had done it via the public school tutoring ISP process retired.)  She made much greater progress spelling wise when she was older, but I wouldn't have been comfortable letting it go that long if she wasn't a fluent reader by then.  

Foundations in Sound isn't super cheap, but it does have good resale value.  It's comprehensive.  I think it's worth doing it.  

[PeterPan]

7 hours ago, SeaConquest said:

he will straight up tell you that he doesn't see any point to learning how to read.

That's because it's hard for him. If he could do it, he would. 

7 hours ago, SeaConquest said:

Maybe, I just need to be patient?

You have no reason to think his phonological processing will improve without intervention. Now it is true there are other things that affect reading, sure. My ds' language issues have affected how he thinks through words, parts of words, etc. So working on language with him bumps reading. But he still needed explicit instruction in phonological processing. 

I think there's a respectful middle ground. With my ds, I have chosen *not* to push reading very hard in the sense of forced, required reading. (books, chapter books, etc.)  I required him to do phonological processing, because it was clearly a disability for him. And we did Barton 1-4 and all the games for the higher levels. But as far as like here's a book, now you will read, I basically don't do that. I provide him lots of material and he's surrounded by text. I make ebooks of comics appear on his kindle and randomly drop around books that might engage him (tank drawings, Makey Makey books, you name it). 

I didn't want to make him *hate* reading, so I've been very careful. But someone here (Heathermomster) assured me that if I went at it and wasn't afraid, he wouldn't even REMEMBER the Barton tutoring. Reality is, I don't think he does. He knows reading is hard, but he doesn't remember doing Barton with me. We did it like 2-3 hours a day when we were making our push, so you'd think it would have made an impression, lol.

 

[Kanin]

On 4/22/2020 at 5:01 PM, SeaConquest said:

He knows his letter sounds. Probably not all the sounds that the vowels can make, but we were almost through all the consonant blends in the intermediate books in Progressive Phonics. But, he was still sounding out c-a-t. And I was like come on, seriously? After two years of reading instruction, why are you still sounding out d-o-g? Something is just not right. But, the other part of me is just like, he is not even 7. And is my stubborn child. Maybe he will just not put the effort into it until *he* decides that he is ready to do it, you know? Maybe, I just need to be patient? But, what if he really does have an issue and I wait? I am so torn about what to do. 

This is what stands out to me the most. My dyslexic students know their letter sounds - they can list off on their fingers all the sounds that the letter E can make, can tell me allll the ways to make the long a sound, etc. If you know your letter sounds, you can do "phonic decoding." That is, say each letter sound in order, and then blend the sounds together to make a word. Kids can be very accurate with this... and also VERY slow. It's just a laborious process... like washing the floor with a toothbrush. It can be done, and done very well, but it takes forever and nobody would want to do it because it's so laborious.

Phonological awareness is absolutely necessary to take phonic decoding and make word reading automatic. Phonological awareness includes the ability to count words in a sentences, clap syllables, and separate words into onset-rimes. Can your DS rhyme easily? Narrowing down even more, phonological awareness also includes phonemic awareness, the ability to identify, segment, blend, and manipulate the individual sounds (phonemes) in words. Take a word like "skip." Now change that /k/ sound to /l/. Now you have "slip." Change the /i/ sound to /a/, now you have "slap." Now say "slap" with out the /l/ sound ("sap"). This kind of manipulation is super hard for most dyslexic kids. 

Before starting Foundations in Sound or LiPS, I would buy a copy of David Kilpatrick's "Equipped for Reading Success." It's the best book about teaching reading that I've ever read. In it, he talks about phonological processing at length. He has an assessment you can do (the PAST, also found free online), and in the book, has a section with quick exercises that teach phonemic awareness from the easiest to most advanced level. Some levels will probably be easy, some difficult, but the great thing is that kids CAN master them, and CAN attain normal phonological processing. That, combined with knowing letter/letter combinations to automaticity, and a structured phonics program with plenty of practice, is what we know helps dyslexic learners. At this point, that's the "gold standard" for how to teach reading. I'm talking about the nitty-gritty of how to read the words, not comprehension, syntax, or anything like that, just the mechanics of reading.

Does your son need all this? It certainly sounds like he needs a change, since he's so resistant to reading right now. Like PeterPan said, if he could easily do it, he would. If I were you, I would get a complete set of phoneme cards (I like the Fundations level 3 letter sound cards), the Kilpatrick book, and spend a few weeks just working on letter/sound automaticity, and phonological awareness. There are a bazillion ways to make sound cards fun - lots of jumping! competitions! challenges! - and the Kilpatrick exercises are pretty motivating because you always do easy ones for review so kids feel proud, and then a teeeeeny bit (like 3-5 minutes) of work on a slightly harder level. 

If you look up David Kilpatrick on YouTube, you can watch some of his lectures. The Reading League on YouTube has excellent videos about the science of reading (for some of the older ones, just sort the videos by oldest first). 

[PeterPan]

56 minutes ago, Mainer said:

If I were you, I would get a complete set of phoneme cards

I think she would find that LIPS (or presumably FIS, which I haven't used) would start *even more* foundationally. This dc is very young, so it would not be overkill to go back and bring in multi-sensory work. When I did this with my ds, we did the tasks with the blank tiles, with face magnets, with sandpaper letters, with a salt tray, writing on our backs. Every step we added *just a few* sounds and we did it as many multisensory ways as we could. I think she would find that a nicely structured program will do this for her and make it easy.

The key to overcoming the disability is sometimes in being willing to make the steps SO SMALL that the person can finally get it. If the steps are too big and we just drill them more with things they don't really get, all we do is cement it can't work. Sometimes there's a smaller step, something in between, and as people without the SLD we don't realize what that is. So for instance to use a card, that's knowing the visual, naming, thinking about the sound, all kinds of steps. She needs something that helps her break down that bigger goal into the *smallest* steps, the most basic components. Then those components build. 

With my ds, using LIPS, we were starting with *if you say the sound could you see what your mouth is doing". If you say the sound, could you recognize the mouth shape? And then could you think about what would happen if you voiced or devoiced that sound? What other sounds do you make that way? Could you hear that sound if I said a word? Could you build words using those mouth pictures?

I mean, think about how far we can back up, how small we can make the steps until even a person with the most significant disability can get it.

I think LIPS is brilliant. I haven't seen FIS. Some people have liked it and it has the virtue of being highly scripted. It probably has some flaws (based on feedback we've had here on the boards), but it is highly scripted. 

He's already had basic instruction in the sound/written connection, so I think he's going to need instruction that backs way up, to the smallest parts. I would not go with anything that might let him fail at this point, since he's already convinced he can't do it. Get it so within reach, the steps so small, that he definitely can do it.