Dyselxia help

[PeterPan]

Ironically, some of these programs seem really short on the multi-sensory. I think Mainer's comment to use tiles with whatever you choose was important. We were pretty much in the overkill camp for multi-sensory. We used lips faces, blank tiles, letter tiles, letter magnets, sandpaper, writing on our backs, writing in sand, etc. and we did every phonogram, every word, even phrases and sentences (usually just in sand at that point) that way. So he had done the words/skills 4 times a day, sometimes multiple days, with multi-sensory before we ever moved it over to drilling.

Some of that is probably kid-specific too, with just how much multi-sensory you need. My ds is strong for learning through kinesthetic input, feeling it, touching it, and he needs that connection of this is how it looks, this is how it feels. We did a lot with mirrors and slowing down and seeing it and feeling it. We put our hands under our jaws and felt the vowel changes and felt the breathing and distinguished syllables. It was a very hands-on experience for us.

I'm a very impatient person, and I find it very challenging to stay in the moment and be patient and go ok, this is right where the dc is. That's what you do though. You back up and you look at all the options and you go ok how far back do I have to go to get the click, get the understanding? What tools will I need? And once you figure out what is getting understanding, then you build it very methodically, very patiently. Honestly, you probably couldn't pay me to do what I did for ds. Totally admire Tokyo, because me I'm like LET ME OUT, lol. Only for love I guess, lol.

[Lecka]

Tiles were really helpful for my son as well.  

[Terabith]

Okay....she sounds an awful lot like my daughter.  And I am SO not an expert, because we kind of bullied her into learning how to read, and I'm not even really sure how it happened, honestly.  But the more I read, the more she just sounds incredibly like Catherine.  Poor phonological processing and visual memory, amazing oral language and story memory type stuff.  Even the emotional stuff.  Wow.  Uncanny.  

I can tell you what I DID, but I'm not sure that I can recommend it.  Because again, I'm not sure how it worked.  We did not have a dyslexia diagnosis in first grade.  I had a feeling there was some kind of weird learning disability glitch, but the kid knew her letter sounds at 18 months and could orally blend by her second birthday.  She was verbally precocious, so she didn't hit those early warning symptoms of dyslexia, but there was enough trouble that I knew something was up but nobody could tell us what it was until later.  

I read out loud a lot.  Like 3-4 hours a day for years and years and years.  And she listened to a zillion audiobooks.  We tried vision therapy, but it was two hours away, so they were trying to have us come once a month or so, and she was so resistant and then developed full on PTSD from it, and the optometrist told us she was going to wind up a juvenile delinquent.  That was a nightmare.  I still think vision therapy could have been super helpful, but I wish I'd figured out earlier on how traumatic it was.  But she was so emotionally resistant to everything that everything was more or less a traumatic experience.  I'm not sure what we could have done differently, but I have a feeling I handled it badly.  

I used Reading Eggs, Headsprout, and then Funnix 2.  Headsprout was really pretty awesome.  There's a certain amount of rote repetition that is required, and my younger daughter needed more than my older kid did, and both kids were a lot more willing to put up with repetition from Headsprout than from me.  We also did a ton of Webster's speller reading.  And read out loud from easy readers.  I started with Nora Gaydos and then the I See Sam books and then a bunch of level one and two books from the library.  And I bribed and cajoled and threatened and did a lot of stuff that wasn't pretty and I don't recommend.  And then she just started reading.  But the weird thing was, she started reading books silently and being able to answer comprehension questions about them but not being able to read the books aloud or decode more than like one word in ten.  I have no idea how it worked.  I mean, we put in a lot of time....probably 1.5-2 hours a day of work on decoding for a year or so before that, and then she just started comprehending as a gestalt.  But she was so resistant, no matter how game like or rewards were involved, that it felt like I bullied her into reading.  She loved it when it became easy.  And if I was doing it over again, I'd probably use dyslexia specific resources.  But I think the computer stuff is worth trying, because it's a lower level of intervention and it was the easiest to get compliance on.  And again, we didn't have a diagnosis, even though I'd been approaching experts since she was 2.5 saying I think there's something weird here, but they blew me off till she was almost 8.  So the experts were saying no dyslexia, but they also weren't running CTOPP, either.  She still is a terrible speller.  She started Wilson tutoring in second grade, but she really didn't make any progress from it.  Did it for two years, then started again in fifth grade.  She was READING at a high level, but couldn't spell even first grade words then.  We started Wilson over again, this time with a teacher from the autism school.  And she really made great progress with her.  The teacher also tried to teach her to spell sight words using all the multi sensory stuff, but she figured out what I had figured out years before, that repetition really didn't work for spelling for her.  She just didn't have the working memory for it.  We could drill a word a thousand times a day, in 30 different media, and repeat it for ten days....so ten thousand repetitions, and on the eleventh day, she would spell of "uv."  But the autism teacher adored her, and was used to working with kids with frankly much lower IQ's, so she thinks Catherine is brilliant and funny and adores her, and just have had much better emotional rapport.  

[Pen]

4 hours ago, 4KookieKids said:

My only concern with drilling fluency is that it will encourage her to memorize more instead of sounding out left to right. Thoughts?

 

Our Way to achieve fluency was to have ds read aloud from the HN Sound Out chapter books multiple times till his reading was confident with good flow, prosody, intonation, etc at each level before working the same way at next level up.

I used their online test to determine what level to start at. 

I did not have him read the same book multiple times in a row to avoid memorizing. I would cycle a few of the Sound Out books and then test fluency and automaticity with a new book or passage at same level. So that way it would show he was actually reading the words, not relying on his memory of the book. 

We also did timed reading of passages from the HN Reading Intervention Program 

 

At some point, ds got into a concurrent enrollment at our local school so he could have IEP servicesss  .  He had a small group or one on one for dysgraphia in the SPED room, then a half hour with me oneonone in the computer room or library, then a half hour small group reading circle with a teacher in the Resource room.   At schools they used Treasures program and that also had a weekly check of fluency. 

[4KookieKids]

I'm overwhelmed by all the ideas! Thank you all so much! I really appreciate it! Maybe I'll come back to this conversation once I've spent the next week or two reading up on all of these resources! ?

[Guest]

Hugs. You'll figure things out ?!

[4KookieKids]

 I wanted to update a little bit: the last three therapy sessions with her NILD  person went amazingly, apparently.  She told me that dd made real leaps and she was really encouraged by that and hopeful that we’ll see big changes soon.

 We ordered  LiPS and will see what we can do with it. I read through the free OG stuff and thought it looked like really good stuff! I’m hoping to start it in a few months after we giv VT and LiPS our best shot for a while. I figured out that she’s less resistant to VT if we don’t do it first thing in the morning.   She says she just can’t do it when she’s tired which I thought was fair enough. Her eyes are much weaker than I thought based on the standardized scores I got back ( A few things like visual closure and visual form consistency had her scores beneath the 1st percentile… ) so we’re really just going to focus on that and just continue clapping syllables and Liz’s nonsense word game and the like for now.

[PeterPan]

Ooo, LIPS is good stuff! You'll be able to do a lot of that orally and with tiles. I wouldn't be afraid to push forward with it, honestly. She'll probably be fine, and what will probably be hard about it will be the working memory, holding the sounds in her head, and manipulating them, not so much a visual component. So if she needs breaks, take breaks. That's really GOOD that she's saying how she feels and asking for breaks! That self-monitoring is definitely something to work with. If they can tell people what they need, people want to help.

That's exciting that your NILD person is having better sessions!! I still think it's odd that you need LIPS on top of NILD, if that person is doing everything Tokyo is saying it ought to involve. But kuddos to you just making it happen. It's better just to do it, get the progress, and get it going. All that matters is it gets done, and sometimes doing things multiple ways helps things click. One key with therapy is INTENSITY. By doing it yourself, you're allowing yourself time to step up the intensity. You want short, frequent work sessions where she's really engaged.

Some ADHD kids need a fair chunk of time to wake up in the morning and be ready to work. It can be 1 1/2 hours, 2 hours, pretty significant. My dd and I considered that part of her personal reading time, and we didn't plan on being together. I'm pretty high energy in the morning, like boom let's do this and this, very on, and she needs to go SLOWLY in the morning. So you're wise to be talking that through and problem solving. She has to understand how her body works and how she can work with it.

[Kanin]

Great update! WELL done! LiPS is really pretty fun, and the mouth pictures are funny to kids. It doesn’t feel like reading practice, really. I hope you like it!

[PeterPan]

LOL Well it wasn't FUN for *us* but that's because with ds' apraxia it was like rocket science. But yeah, just in general, I can see that. And even if it's hard for whatever reason, it's a powerful tool. You can run the techniques parallel with your OG work and not even leave them behind if they work for her. That's what I did. I blended LIPS into Barton 1 and 2, because it was just really good hands-on methodology for him. You'll know if that's good for her, and it will be obvious to you how to do it. 

[4KookieKids]

Ha ha. Thanks. You know, it took me a whole two weeks to figure out what the vision therapist identified in five minutes... Dd had been telling me during her Broch string exercises that she only sees one string most of the time (instead of the X that she was supposed to see). I finally figured out that focusing on that bead was just so difficult for her that her brain is just suppressing her vision in one eye on a regular basis. It completely blew my mind.

Also, related to vision stuff, I read back through her initial report and found that she scored *under* the first percentile in some areas like visual closure, which is supposed to be very strongly related to guessing words. All interesting things for me to ponder, because so money of dd's issue seem like they have similar-looking symptoms (i.e., struggles to read, guesses at words, etc.), and yet the underlying issues are much more varied (can't focus on the text, poor visual closure skills, can't blend, can't substitute/delete/add sounds in words, can't tell syllables, etc.). I can only imagine how frustrating all of this is for her!

[Lecka]

When kids get to a little older age, the percentiles can get pretty low, because they are comparing to kids the same age.  It doesn’t necessarily reflect the skill being so bad.  It is delayed but it isn’t necessarily so bad.  

My 9-year-old has some things like that, and they’re not things that are objectively that bad, but they are things that most kids his age can already do.  But it’s not like getting a low score on a test where it would definitely mean you didn’t know any right answers.  

I hope you see some synergy between areas.  It makes sense to me you hopefully will.  Visual closure and blending seem like they would really go together, because if you aren’t blending through a word you are reading through a word, and vice versa.

The other thing is, keep in mind that kids develop some of these skills (visual skills also) over a period of years as they spend more time doing close work and reading.  It’s not happening overnight for anybody.  

And, your daughter has been learning useful, important things all along, too.  

But it’s good you are seeing where her weaknesses are and can be more aware.  Doing things at a slightly older age has benefits too, in maturity and communication and attention span and all those good things.  Hopefully this is a productive time for your daughter.  It’s great her tutoring sessions are going better, too.  And — I think there’s a lot of reason to think there will be synergy between what you are doing and what the tutor is doing.  It sounds very good!

[PeterPan]

39 minutes ago, 4KookieKids said:

Ha ha. Thanks. You know, it took me a whole two weeks to figure out what the vision therapist identified in five minutes... Dd had been telling me during her Broch string exercises that she only sees one string most of the time (instead of the X that she was supposed to see). I finally figured out that focusing on that bead was just so difficult for her that her brain is just suppressing her vision in one eye on a regular basis. It completely blew my mind.

Also, related to vision stuff, I read back through her initial report and found that she scored *under* the first percentile in some areas like visual closure, which is supposed to be very strongly related to guessing words. All interesting things for me to ponder, because so money of dd's issue seem like they have similar-looking symptoms (i.e., struggles to read, guesses at words, etc.), and yet the underlying issues are much more varied (can't focus on the text, poor visual closure skills, can't blend, can't substitute/delete/add sounds in words, can't tell syllables, etc.). I can only imagine how frustrating all of this is for her!

Yes, that shutting off or alternating is what the eyes do to resolve the poor convergence. So rather than seeing double, the brain just shuts one image down. Our VT doc did a Visagraph thing with infrared goggles to track the eyes while reading, and you saw the same thing. Her eyes would switch and jump, and it would cause her to lose her place, making them backtrack a lot. 

I think, and this is just my two cents, that situations like this are packages that you unwrap. You resolve the physical vision problems, so her eyes can move and track and converge and stay on the page, so the things that develop from those (visual processing, visual memory, etc.) can be there to work for her. Then you see what's left and you go ok we've got a language issue or a decoding issue or this or that. You can have layers. The physical vision stuff is not dyslexia, but it's so so common in kids with challenges. She may have some retained reflexes underlying it. We keep harping on that, but that would be an area to put your energy. 

Fwiw, my dd did almost no school work during her VT, even though it was many months. Afterwards, she made MASSIVE gains. She was actually not behind before, but it was like her new eyes were just ready to see anew. So I don't think it's necessary to be all freaky if you're making progress on the vision stuff. I would check retained reflexes, because working on those will let the vision therapy work better. Then it's just what she has energy for.

[4KookieKids]

Her vision therapist actually tested for retained reflexes. And I did at home too. The only one that either of us flagged was the stnr one because she arched and curved her back when I moved her head up and down (VT didn’t test this one). But I’m planning to do it again amd ask her to hold the position this time and see if she actually can. I hadn’t asked her to hold it if possible and I’m wondering if the arching is  a function of how I tested them because every single one of my kids did the exact same thing with their backs. Lol. Maybe it’s not a fluke but I wanted to wait. Week and try again.

Edited August 2, 2018 by 4KookieKids

[PeterPan]

STNR would make sense, and it's super common. Testing reflexes is funny. I tend to under-identify, because the symptoms are not like all/nothing. The reflex can be *partially* retained or partially present. So yes, if she has STNR retained, that's probably why she's having such a wicked hard time in the VT. It only takes 40 days of consistent, daily effort doing the exercises to get the stupid reflex to integrate. Seriously. Instead of retesting to prove it's not, my two cents is go ahead and start doing the exercises, 3-5 times a day, every day, and commit to the 40 days. And maybe retest the others and see if there were some with subtle symptoms.

For my ds, doing the exercises for the retained reflex was challenging and uncomfortable. That's actually how we knew we were on track, because they got more comfortable (less uncomfortable or annoying or irritating) as the reflex began to integrate. Now it can be that the reflex is there and your dc will do the movement for the exercise so quickly or imprecisely that it won't really work on the reflex and won't feel uncomfortable. But if you're doing the exercises slowly and accurately, it may be obvious it's hard/useful to her.

Ok, so I googled for STNR and Pyramid of Potential, because that's the instructions/system the PT we used used with ds to get his reflexes integrated. Here's a link on her take on STNR and vision. http://archive.constantcontact.com/fs146/1103098668680/archive/1120218962790.html  Kinda makes you wonder why the VT doc didn't know enough to test/treat this. Terribly common. Also, there's a whole book on STNR/ATNR and ADHD symptoms Stopping ADHD 

And here's a video from PoP on how to work on the STNR. Key is to compel the dc to slow down, putting your hands on them, saying the steps (which I had to do for my ds), whatever it takes, so they do it slowly and carefully. 

 

[PeterPan]

Foo, she's not showing how to do the exercise. Someone else here wrote her. She sells access on her site, and I think maybe she had some download options that weren't crazy expensive. But even if you paid $100 for her full dvd, still it's a nothing. The exercises worked, and they'd be all there. But maybe snoop around online, see what she has put up for free, see what is cheaper on her site. 

It's really not a rabbit trail to work on reflexes. That tracking is developmental, and it develops after the other things integrate. So you're going back and fixing WHY she can't track, the underlying reason, rather than doing tons of work trying to form the skill as a splinter skill and frustrating the kid. You may even get the splinter skill, but it's going to go a LOT better if you build the foundation first by integrating reflexes. And, sorry, but if your VT doc didn't check for STNR, they're... well I'm just removing not nice words. Think hard and verify that what your therapist is doing is best practice. 

[ElizabethB]

You can work on a lot of the phonemic awareness activities orally until the vision is better, focusing on blending and the feel and sound and position of each sound and how they blend together to make words.

[4KookieKids]

9 hours ago, PeterPan said:

STNR would make sense, and it's super common. Testing reflexes is funny. I tend to under-identify, because the symptoms are not like all/nothing. The reflex can be *partially* retained or partially present. So yes, if she has STNR retained, that's probably why she's having such a wicked hard time in the VT. It only takes 40 days of consistent, daily effort doing the exercises to get the stupid reflex to integrate. Seriously. Instead of retesting to prove it's not, my two cents is go ahead and start doing the exercises, 3-5 times a day, every day, and commit to the 40 days. And maybe retest the others and see if there were some with subtle symptoms.

For my ds, doing the exercises for the retained reflex was challenging and uncomfortable. That's actually how we knew we were on track, because they got more comfortable (less uncomfortable or annoying or irritating) as the reflex began to integrate. Now it can be that the reflex is there and your dc will do the movement for the exercise so quickly or imprecisely that it won't really work on the reflex and won't feel uncomfortable. But if you're doing the exercises slowly and accurately, it may be obvious it's hard/useful to her.

Ok, so I googled for STNR and Pyramid of Potential, because that's the instructions/system the PT we used used with ds to get his reflexes integrated. Here's a link on her take on STNR and vision. http://archive.constantcontact.com/fs146/1103098668680/archive/1120218962790.html  Kinda makes you wonder why the VT doc didn't know enough to test/treat this. Terribly common. Also, there's a whole book on STNR/ATNR and ADHD symptoms Stopping ADHD 

 

 

Wow those articles are crazy. She has almost every issue they mention, from the adhd symptoms to the W-leg shape while sitting. I’m slightly creeped out by how many of those things fit her (not to mention all the vision issues).

 

eta I can test again but I actually felt like all of them were super obvious. DS9 had a couple that were exactly what they said might happen (elbow obviously bending when rotation head opposite direction, for example) but the ones that I didn’t flag seemed like the kid held perfectly still (which was equally odd because they’re usually so fidgety). They really enjoyed doing the testing  though and asked me to do it again the next day. Lol.

Edited August 2, 2018 by 4KookieKids

[Lecka]

Boo ?.  

Have you ever googled “w sitting”?  It has got a bad rap.  My kids have never done it but I have been around kids who do it and it’s been something where they try not to have their kids sit that way. 

The retained reflexes sounds like it’s good to work on!  

[Lecka]

I don’t know if it’s possible for you to when an OT consult with her, but it might be helpful.  

I think they have a lot of game ideas and supported-sitting ideas (if it’s what they recommend) for w sitting, if it’s something where she can build up other muscles or whatever.

I have a good impression, when I have seen stuff.  

Both my boys have qualified for OT but for other things.  

Edited August 3, 2018 by Lecka

[4KookieKids]

48 minutes ago, Lecka said:

I don’t know if it’s possible for you to when an OT consult with her, but it might be helpful.  

I think they have a lot of game ideas and supported-sitting ideas (if it’s what they recommend) for w sitting, if it’s something where she can build up other muscles or whatever.

I have a good impression, when I have seen stuff.  

Both my boys have qualified for OT but for other things.  

 

 This is where we run into the wall that I mentioned in some other thread regarding my son, in terms of there being a severe dearth of providers in my area. Dd has been on waitlists for OT for the last eight months, and there are still no openings in sight. 

[Lecka]

That is too bad!

[Lecka]

Just if she would think it was fun — scooter boards can be a fun way to sit without w sitting. My son has played soccer with scooter boards, with sitting on the scooter board and shuffling to the ball and kicking, and it’s got a lot of good movement.  It’s one my son thinks is fun.  I don’t know if that would be something recommended, but it is one my son likes, and I know it’s the kind of thing recommended for some kids, if it its the right level.    

An easier thing is for kids to sit and hold on, and have somebody pull the around with a jump rope tied to the scooter board.  So popular, lol.  

Edited August 3, 2018 by Lecka

[PeterPan]

OTs are a mixed bag anyway. Yeah, I hadn't thought about it, but my ds' W-sitting totally stopped. I know he was doing at 5/6, because he was doing it at a wedding we were at, very conspicuous, with people commenting on it. But yeah, his reflexes are integrated and now he doesn't do it. I just hadn't made the connection. 

A LOT changed for us with getting reflexes integrated, and that just takes 40 days. We're not talking about forever. It's hard work to tell yourself to do them every day, 3-5 times a day, whether you feel like it or not, but the results may blow your mind. And if she just has the one, that's all the better, kwim? Once we really, really got into a good routine and had compliance (not as easy as it sounds with ds, ugh), we actually had noticeable improvements in 2-3 weeks. But we were seriously doing them 3-5 X a day. Small effort, big benefit, costs nothing.

[4KookieKids]

So my search isn't turning up any threads on retained reflexes, and the information I'm finding online is incredibly conflicting: do it three times a day vs. do it 2-4 times a week, do it for two months vs. minimum of 6-12 months, etc. Are the main resources for this the paid ones? I found tons of youtube videos, but how do I know they are legit and will do any good? Is there any actual science regarding these that I can read about? Should I start a whole different thread?

[PeterPan]

Nah, you're good to keep going here. Or start another thread. 

If you want a laugh, some Pilates moves are similar to exercises for retained reflexes.

I think you need to understand why the reflexes are there. Each one is part of a developmental process that makes things happen. When the reflexes get USED, then the reflexes get "integrated" or put away on the shelf. As you age (elderly), they actually reappear as your body starts to decline. At least I read that somewhere. So anyways, the reason you want to do the exercises consistently, every day, and the reason more is more better, is because you're giving the body enough USE of the reflex that it goes ok, I can put that away, integrate it, and move on to the next step. That's what you're trying to do. So more is more better. 

Honestly, on amounts, I think you'll find your sweet point. My bare minimum suggestion (not based on evidence but on the PT who helped us) was do them every single day without fail. My ds really struggled with them, because they made him uncomfortable and exaccerbated behaviors. LIke we went from bad to seemingly worse! It was crazy for a while. It took us about 6 weeks to get a routine where he would comply and actually do them with me. Life was HARD then, oh my. It was really, really bad. Once we had him to where he would do them at all (and were making a little progress, like he could at least tolerate the motions and would do them with enough motivators and supports), then we ramped up big time. At that point we went whole hog, 3-5 times a day, because getting it over with made more sense. And once we did that, literally in about 3 weeks it was wow and about 4-5 weeks of that and we were DONE, just totally done. We went back to the office and it was an astonishing change. Even though the PT knew it could work, she still was shocked. Like she knew, but you don't realize till you see it. He went from feral, on my back, almost impossible to work with, to just calmly sitting there and replying.

Working on retained reflexes was the absolute cheapest thing I've done of all the things I've done for my ds, and the results were that profound. What you might do is write the lady at Pyramid of Potential and see what she recommends you buy. Or pick the download version of whatever she sells that hits all the reflexes. Or pick a video that has just the one you think you need. Or google for exercises for it.

Just start somewhere, kwim? If she looks uncomfortable, floppy, complains about it, rushes through it, whatever, that's probably a sign you're on the right track, lol. It should be a slow, rhythmic, methodical movement. I don't even know where our papers are now with the exercises we did, sorry. That was a few years ago. Ds tended to rush, and that's what took us so long to bust through. Once he could slow down and do it to my instructions, then we started making progress. But think wrestling a wet, feral cat. That's what working with him was like. Ask Kbutton, lol.

[PeterPan]

This is the exercise we did for STNR, irc. Notice the care the practitioner gives, saying to keep it slow, keep it smooth. They shouldn't BOUNCE up or zip zoom. Slow down, slow up. And in the forward position the head is still down I think. You can google and check. There are different reflexes, different ways the head goes. I just had it in my notes at the time. So like when I say it was hard to get compliance, this exercise, what you'll see in this video, was SO uncomfortable for my ds that he would sit there almost bouncing, rocking up and down, up and down. It was crazy! So I was putting hands on him, slowing him down, making chants for the motions. My guess is we did 10 reps 3-5X a day. That was once he was actually compliant and doing it CORRECTLY. The price is right (free), so I'd just try it, see what happens, kwim? And you can report back. I'll be interested to hear if it's hard or easy for her. :)

 

 

[4KookieKids]

Well, she’s not a fan of the STNR exercises. She wants to we go and wiggle her hips the whole time. What’s interesting is that I also have her do the exercises for the retained reflexes I flagged on her brother, but did not flag on her, and she does those exercises without issue. They are slow, Controlled, and she looks completely relaxed. It’s a bit uncanny how on point  these retained reflexes descriptors and expectations are for my kids.  Very uncanny, in fact. 

 Vision exercises were also much more difficult today, after taking a 4 to 5 day break. We were back to crying and refusing to do them.  Stated reason was that she didn’t want my help, but I can’t trust her to do the exercises correctly on her own… So we had a bit of a power struggle over that, but I am not sure if the power struggle is the real issue, or if the real issue was just that it was hard. I will chalk it up to a lesson learned on my part, and to not take such long breaks again… 

On the whole, I talked with her Dyslexia therapist, And we decided to take a break from that aspect of things for a few months while we work on the retained reflexes and vision therapy. I am certain she will still need help with the phonological processing side of things. But I am hoping that it will go more smoothly if we can get these other things ironed out first. In the meantime, we will casually go through the LiPS, But I think our priority really needs to be on the vision stuff, and the reflexes, since those seem foundational to the vision stuff. She was disappointed with that decision, and really wants to keep seeing the dyslexia therapist, but I think I am happy to take a break from going to those appointments twice a week. 

We did luck out, and have an opening with an OT open up at the exact same time as my son will be getting OT as well, and I am hoping they might be able to help some with the reflexes. Even if not, it’s still something we have been waiting for for the last 8 to 10 months, because she has a lot of anxiety and other emotional issues  as well as sensory processing issues, and I am hoping that OT will greatly improve the quality of life here at home. ?  maybe I’m just trading one hassle for another, but I think that we will be able to get much more out of the dyslexia help if we can make some progress in these other areas first. 

[PeterPan]

Given how challenging the reflex is for her right now, how impactful it is, and that it's directly hindering her ability to do the VT work, it makes no sense to do the VT homework right now. You should completely suspend the VT, work on the reflexes without fail 3-5 X a day for 40 days, and see where that gets you. At least for my ds, once we got his ability to tolerate doing the exercises correctly up and then got the frequency up, he got dramatic progress pretty quickly. You might only be looking at a 3 week suspension of other therapies that use vision before you'll be ready to go back to them. Seriously.

And yeah, that's pretty amazing that it's SO obvious that it's an issue for her and that the ones that are integrated (not retained) aren't.  Now you see why we keep bringing them up, hehe. When you get the most foundational things repaired, everything else goes better. 

She's bucking it because it's hard for her. Make it fun, bring in motivators. Tell her that only reps done correctly count and that if she rushes and does them on her own she'll just have to do them all over again. TV is a solid motivator in our house, so I found some cute series that we brought out only for doing reflex work. There's this series sort of behind the scenes in zoos that you can stream on prime. Like Zoos of Ireland or some such thing, lol. It could be a new Disney movie that you buy and she gets to watch 30 minutes while doing the exercises IF she slows down and does them correctly with you. The minute she stops complying and doing the exercises, the movie turns off. Kwim? 

I'm pretty much in the whatever it takes camp on reflexes. They were AWFUL in our house to work on. Everything got worse, behaviors got worse. Since she has sensory issues, you may need to do some work afterward to help calm her body. What she's feel could be very intense. Decrease demands (but keep interaction!!!), increase calming sensory, get through it. When you get to the other side and the reflex begins to integrate, you'll know. Just keep going at that strong pace at least through the 40 days. At least that's what we were told. We did them quite a while, but 3 weeks at that vigorous pace got us over the worst part.

OT will be a mixed bag. You can go to 12 and they'll all be different, lol. I say use 'em up till they're not worth anything more and then spit out and try the next. Or go for a while then take a break and try somebody new. I actually really liked our last OT, and I keep OT on my ds' IEP. I'm just more middle of the road about them. They all have holes, and very few will check for reflexes. I've only had *1* check him, in fact, and that one didn't do it thoroughly or correctly. That's why I ended up using a PT someone referred us to. So use 'em while they're doing you good and when you've maxed out their knowledge move on. 

[Guest]

4KookieKids, check out this resource and see if it might be useful to you. It is inexpensive and your library might carry it.

https://www.amazon.com/Parents-Occupational-Therapy-Autism-Special-ebook/dp/B01B23CDJE/ref=mt_kindle?_encoding=UTF8&me=&qid=1533764266

All the best,

M

[4KookieKids]

Ok so I’ve had time to work with dd more, I’ve had more questions arise:

1)  when we go to the library, she routinely chooses books that I don’t think she can read. She sits in her room or in the car looking at them, Paging through them (at a speed that not even I could read…) And she tells me she’s reading them. But she can never actually tell me what she’s reading about, if I ask her but she read for what is most interesting. Should I discourage this? On the one hand I like that she still enjoys “reading”. On the other hand, I worry that it might be reinforcing bad habits of skipping words and skimming and not reading things carefully.

2)  looking ahead to ITBS or other types of standardized testing, do I need to apply to make accommodations If I were giving a test at home, or only if I go through someone else? Is it only school tests that get accommodations? Does achievement or intelligence testing.  Also get accommodations? Are there particular tests that are more suited to someone who is dyslexic and still very verbal And possibly still gifted in other language areas?

 I’ve never been a fan of the idea testing before, but all of this has made me genuinely question is perhaps my expectations are too high, and I think it might be helpful for me to have objective information as to her progress. 

3) This one is not a question, just a thank you: she loves her talking book player from NLS. She spends 3 to 4 hours a day with it, carrying it around the house, and listening to her talking books. 

4) She started OT, and I think it’s a huge hit. Yesterday, after her appointment, she came home and told me that she wanted to work in that same office when she got big, so that she could help kids have good feelings too. I thought it was great. I’m still working on getting access to that OT book recommended, and I think I am working on it even more now that I see what a benefit it is to her. ? Again Just an update, not a question! ?

Edited August 22, 2018 by 4KookieKids

[PeterPan]

4 hours ago, 4KookieKids said:

3) This one is not a question, just a thank you: she loves her talking book player from NLS. She spends 3 to 4 hours a day with it, carrying it around the house, and listening to her talking books. 

This is so exciting!!!!!!!!!!!!

4 hours ago, 4KookieKids said:

4) She started OT, and I think it’s a huge hit. Yesterday, after her appointment, she came home and told me that she wanted to work in that same office when she got big, so that she could help kids have good feelings too.

That's amazing!!! Whatever they're doing, it's having a good effect!!

4 hours ago, 4KookieKids said:

2)  looking ahead to ITBS or other types of standardized testing, do I need to apply to make accommodations If I were giving a test at home, or only if I go through someone else? Is it only school tests that get accommodations? Does achievement or intelligence testing.  Also get accommodations? Are there particular tests that are more suited to someone who is dyslexic and still very verbal And possibly still gifted in other language areas?

These tests are a mix. You'll learn something, yes, but it will basically be stuff you already know. Has she had a psych eval? Once she has a psych eval, you'll actually have paper trail saying what her accommodations should be. Until then you're guessing. And it's not so much that you can't do that (obviously the testing company won't know, since you're doing it in-home), but you'd feel more confident having the paper trail. I think given where she is it could be more discouraging than anything. I probably wouldn't bother unless you can get something like the Woodcock Johnson that is open-ended, making it less apparent where she's not doing well. 

4 hours ago, 4KookieKids said:

1)  when we go to the library, she routinely chooses books that I don’t think she can read. She sits in her room or in the car looking at them, Paging through them (at a speed that not even I could read…) And she tells me she’s reading them.

I have no clue. Obviously not every book needs to be narrated, but she needs time when she's reading, definitely reading, at a level that is improving her reading. So I'd be more concerned about making sure she's also reading something she CAN decode than I would about taking this stuff away. 

 

[4KookieKids]

1 minute ago, PeterPan said:

This is so exciting!!!!!!!!!!!!

That's amazing!!! Whatever they're doing, it's having a good effect!!

These tests are a mix. You'll learn something, yes, but it will basically be stuff you already know. Has she had a psych eval? Once she has a psych eval, you'll actually have paper trail saying what her accommodations should be. Until then you're guessing. And it's not so much that you can't do that (obviously the testing company won't know, since you're doing it in-home), but you'd feel more confident having the paper trail. I think given where she is it could be more discouraging than anything. I probably wouldn't bother unless you can get something like the Woodcock Johnson that is open-ended, making it less apparent where she's not doing well. 

I have no clue. Obviously not every book needs to be narrated, but she needs time when she's reading, definitely reading, at a level that is improving her reading. So I'd be more concerned about making sure she's also reading something she CAN decode than I would about taking this stuff away. 

 

 

Yes, she has had a psych eval, but they didn’t address the learning or reading difficulty at all. They focused exclusively on her emotional state… It was somewhat disappointing. I wonder if the speech and language pathologist who evaluated her phonemic issues would be better able to make recommendations for accommodations.. I might contact her to figure it out!

 

 As for her reading, I had about two hours today where I thought her reading had improved so dramatically it was off the charts. She was reading a book to her younger sisters (princess in black series, so roughly kindergarten or first grade level), and it sounded absolutely stellar. I sat down to listen with them, and she asked me to hold the book while she read, and then she started dangling upside down facing a different direction while “reading.” Then she looked at me with a goofy smile, and just said, “I just memorized these books!”

[Guest]

Good to hear you have found an OT and that your girl feels like it is helping ☺️.

I wouldn't worry about the OT book. I suggested it in case you had no other alternative or if the wait turned out to be longer. 

Hoping all goes well and that your girl makes much progress!

All the best,

M

[4KookieKids]

13 hours ago, PeterPan said:

I have no clue. Obviously not every book needs to be narrated, but she needs time when she's reading, definitely reading, at a level that is improving her reading. So I'd be more concerned about making sure she's also reading something she CAN decode than I would about taking this stuff away. 

 

 To be clear, this is not assigned reading or reading for school, since we are currently not requiring that. This is just pleasure reading that she chooses to do on her own. So I am not requiring narrations, but I just sometimes ask her what she read about or what is happening in her book. Until we get the reflexes and vision sorted out,   And spend some time working through lips and working on sounds and syllables and the like,  I am not requiring any sort of reading.

Edited August 23, 2018 by 4KookieKids

[Kanin]

I would let her do her thing with books, since she obviously has positive feelings about reading this way! I would also work hard to find books that she CAN read on her own (maybe the Boris series from Scholastic Branches, or some High Noon Sound-Out series, or other books from the Easy Reader section of the library). And leave them where she can find them and see if she starts reading them ? 

[4KookieKids]

On 8/2/2018 at 9:23 PM, PeterPan said:

 

A LOT changed for us with getting reflexes integrated, and that just takes 40 days. We're not talking about forever. It's hard work to tell yourself to do them every day, 3-5 times a day, whether you feel like it or not, but the results may blow your mind. And if she just has the one, that's all the better, kwim? Once we really, really got into a good routine and had compliance (not as easy as it sounds with ds, ugh), we actually had noticeable improvements in 2-3 weeks. But we were seriously doing them 3-5 X a day. Small effort, big benefit, costs nothing.

 

So we did them almost religiously 2-3 times a day (usually one longer 20 min session and two 10ish min sessions - but broke it up by doing just a few minutes each of multiple exercises targeting the same reflexes) except Sundays for the last four weeks. I retested my kids today and didn’t flag anything as being unintegrated anymore (despite me looking with an extremely critical eye). Can they stop the exercises? Or maybe just back off to a few times a week to make sure things get/stay fully integrated?

[PeterPan]

7 hours ago, 4KookieKids said:

 

So we did them almost religiously 2-3 times a day (usually one longer 20 min session and two 10ish min sessions - but broke it up by doing just a few minutes each of multiple exercises targeting the same reflexes) except Sundays for the last four weeks. I retested my kids today and didn’t flag anything as being unintegrated anymore (despite me looking with an extremely critical eye). Can they stop the exercises? Or maybe just back off to a few times a week to make sure things get/stay fully integrated?

That's really good! You could fade to once a day for another 10 days or so, just to make sure they're really staying integrated, and then drop.

And yes, that's why I was saying go for broke and do it so many times. We got that kind of wow progress too once we went all the way, doing them multiple times every day. Well I'm excited for you! There are more reflexes, unfortunately, that I'm less helpful to you about. If you can figure out how to check them, you should. Now my ds had nominal to no issues with them, but they're the next things in the progression to check. Vestibular, vision, etc. 

On the vestibular, it was like have them seated on something flat with no back and *tip* them slightly and see if their head rights. There are some visual reflexes that you work on by spinning  I think. My memory is failing me. The point is, working on those, if you can find a list, will continue to develop the foundation for the vision. Maybe the Visual Spatial Portals book has them? I could check. The vision development flows from all these reflexes working correctly, and of course your goal was to eliminate barriers so they can go back into VT work more comfortably.

Maybe I can go check the VSP book and see what it has. I'm being lazy. 

[PeterPan]

Now would be the time to transfer those reflex work sessions to VT. You have the habits and the routines and the logistics figured out, so don't lose it but transfer it over. My dd, with diligent effort (the level you're putting in now for reflexes) got noticeable progress in 1 month and wow progress at the 2 month mark. The key there is of course working but also making sure the VT doc is giving you enough homework. You should have 5-6 things you're working on, and you should be working intensely enough that you're burning through them, seeing the tasks get easier. 

How was their behavior with the reflex work, btw? Good or any flare-ups of anything? 

Edited August 26, 2018 by PeterPan

[Lecka]

I don’t know a lot about retained reflexes, but there are two things I have heard.

One, irl I have never heard of reflexes being permanently done and over with, with kids who are in early elementary.  Never.  Many kids will have a growth spurt or developmental change, and not be able to do the same exercises.  Now I do think that if you are able to have everything done in a month, this shows issues are less severe than what I would hear about.  I’m sure that makes a difference.  But it’s not a sign of failure if your child has a growth spurt or developmental leap, and something is harder to do again.  

Two, the exercises can be regulating and good to do even if the child is able to do them.  You can just see on this.  There are integrating exercises (not necessarily just retained reflexes, but generically) that are really good for some kids, that help them focus and regulate.  If you see it help, you can keep it.  But this is on a level of.... dribbling a basketball could also help someone focus, it’s rhythmic, it’s cross-body.... it doesn’t have to be an official exercise.  But it can be good to have something in your back pocket for bad weather, half way through an indoor event, etc.  

If you see that, but your kids are tired of the same exercises, kid yoga and Go Noodle are also popular and I think pretty easy (put on a YouTube video).  

Little relay races where kids do a wheelbarrow walk or bear walk or crab walk; those are also fun and easy.  These are harder things to do but  if kids can do them and not be frustrated — they are great.  

If you have seen improved focus or lessened impulsiveness or reactiveness, then definitely look for regulating movement breaks.  

Stuff like bike-riding is good too, though.  Pedaling is rhythmic and cross-body.  I think it’s heavy enough to be considered heavy work.  Swimming is rhythmic and cross-body.  

To some extent — for coordinated kids, there is a lot of easy common-childhood stuff, and they will like it and not mind doing it, or seek it out.  

For kids who aren’t coordinated, the easy, common stuff is effortful and they can’t do it smoothly.  So they are not going to seek it out so much, and it may be more tiring/frustrating, and not regulating.  That’s when you look more for easy things.  Kid yoga has a good reputation then, because it is slow.  Some kids like it, some don’t.  Go Noodle has easy things.  With videos too, some kids will have an easier time watching the same video and knowing what to expect (having a selection of videos).  Some kids get bored with that, and are easily able to adjust to doing things a slightly different way every time.  

I have also heard good things about some Wii games, but my kids were younger and I never knew exactly which game.  A dancing game?  I’m not sure.  

Edit:  we have been 100% reliant on the trampoline for the past several months.  I need to make sure I make an effort when it starts snowing here.  

Edited August 26, 2018 by Lecka

[PeterPan]

For my dd, when she gets stressed the reflexes re-emerge. For my ds, when we recheck him, he seems fine. Now it happens that some things that integrate reflexes are also present in pilates, yoga, that kind of thing. I was watching a Le Cirque exercise video on youtube and their stretching included things that were part of reflex work. But whether they're re-emerge or stay integrated is probably just the child. I also think the intensity matters, like really getting that input. My dd's sensory is so bad (hyper-sensitive, blah blah), that she has never pushed herself hard to do the exercises. She does a little bit, and her system just goes haywire. So obviously someone like that, who's struggling to tolerate the exercises, who's not doing as much, is not getting as much input as someone doing them 3 times a day very intensively. And to look at other people and say what results did they get, again, was the input there. It's the input that integrates.

We continue to do the foot brushing, because that was one thing that was really calming for ds. The PT had these theories on why, but it wasn't really about the reflexes. It just so happens that it also helps integrate one of the reflexes. 

7 minutes ago, Lecka said:

For kids who aren’t coordinated

I missed it, was the op seeing this? That's definitely a thing to want intervention or a plan for, when you're dealing with even mild praxis. Dd has that, and it's pesky. There's a book Beating Dyspraxia with a Hop, Skip and a Jump: A Simple Exercise Program to Improve Motor Skills at Home and School Revised Edition because, well you're Wonder Woman now. 

Remember too, the integration is not yes/no. You can have partial improvement, integration on one side and not the other, etc. I would definitely stick with the exercises diligently *beyond* what you think you need to a bit, just to solidify things. But then, you know, just watch it, see how your kid rolls. It's no trouble to pop them down on all 4s every so often and check things. My ds' spinal gallant was bad, so at night I just check it when I give back rubs. I just keep track of it, kwim? But we did so much overage, went so far, gave SO much input and margin, no there has not been any seeming incidence of re-emergence. Only my dd, who did the bare minimum and struggled and was older and couldn't compel herself has had that happen. So be overkill is my advice.

[Lecka]

I think some kids have more severe issues by nature.  Not everyone can work hard for a few weeks or months and have that result.  

I think an OT can tell by knowing overall things about a kid, knowing how hard it was to integrate, and things like that.  

When I have heard things, I have heard things wrt a population where the results you are describing aren’t the expected results.  

But I think when OTs are seeing things overall and think the reflexes integrated fairly easily, they can give an opinion that it’s not likely to be an ongoing issue.  

I think another way to look at your daughter is to say it was harder for her and she didn’t get the same results, because it was harder for her.  That’s not the same as saying she failed compared to another person who had an easier time.  

I am saying there are kids (maybe like your daughter) who do it for years and it never comes together as much as it comes together for some other kids after 2 months.  There are kids who have been doing it slow-and-steady for years and it just goes like that, even though it’s still good to do.  

Or maybe your daughter could have had better results, that’s also possible.  There are definitely kids who are doing it steadily for long periods of time without having it “fixed,” though.

But as far as op, I think her kids’ progress sounds very good!  I was just mentioning things.  

I don’t think it’s good to set it up like “okay, that’s crossed off the list,” though, because it doesn’t always work out that way.  But there are also a lot of common kid activities that, if kids are able to do them and enjoy doing them, if a kid was doing them then probably it’s not going to be an issue.  

Stuff like swimming, bike-riding, dance, gymnastics, tae kwon do, if a child can participate in these with kids their same age, it’s probably not an issue.  

Thats part of the “overall” picture.  

But other kids don’t quite keep up, take private lessons, go in a class for younger kids, don’t choose to do certain activities, have a lot of frustration with certain activities, etc.  

I have also heard, on the other side, of very athletic kids with ADHD who really benefit from keeping up with similar activities indoors and as breaks, that it keeps up the regulation.  When — maybe someone was hoping for increased regulation in the first place.  It’s a common reason to do retained reflexes exercises.  

Not many people do them for no reason, there is some reason, and it’s usually either for coordination, focus, or regulation, and they are all likely to be “more” than just doing retained reflexes exercises for 2 months.  There’s still a lot more to build in on the same topic of “helpful exercises/activities.”  

 

[4KookieKids]

 That’s interesting what you say about bike riding being a good thing, because Dd has always been calmed by bike riding. Even at just barely six, she could ride over 13 miles and then would actually sleep well that night.

 She does not lack coordination in general, and intense physical exercise does help her manage her anxiety. So she does intense ballet Ina class of older girls twice a week for an hour, and then practices at home daily. 

I had been hoping to transition right over to vision therapy exercises. I need to get in with the vision therapist though and ask for more exercises, because she currently only has two, and she gets bored very easily. We had been doing the vision therapy every other week, because of how far away it is, and because we had a lot of other stuff going on, but I intend to switch that to weekly now, and try to make good progress this fall. With any luck, I won’t have to be making that long drive with four kids come winter, with its snowy and icy roads!!  I have been supplementing the vision therapists’ assignments with vision therapy exercises that I have found online but DD is resistant to them, more resistant to the ones assigned by the therapist, at least.

I did want to ask More about  how to find information on the visual reflexes that you mentioned, PeterPan. I tried finding those with a few brief Google searches, but couldn’t really find anything that seem to match with what you were saying.

[Lecka]

Really I guess I am just suggesting next steps.  If doing a regular movement activity has been helpful, it’s good to keep it up, and there are suggested kinds of activities, that can give an idea for quick breaks, but also for good activities kids might do anyway.  

What happens sometimes is kids are doing an activity and getting a benefit, but it’s not realized, and then there’s a crash when the activity is stopped.  Where — if you’re aware, you can notice and try to provide alternate activities that might have similar benefits. 

[Lecka]

The bike riding and ballet and dance practice sounds great.  I think you have that covered.

What happens sometimes is — VT takes up the space that used to be taken by ballet class, and then it is like a double whammy.  I see things like that where one activity is replaced with another, and in retrospect, the previous activity was very regulating, and the new activity is very stressful/frustrating, and it just doesn’t go well.  

[PeterPan]

Can you get a different VT doc? 

Try Tonic Labyrinthe Reflex or head righting

0:09Left head righting

 

[4KookieKids]

4 hours ago, PeterPan said:

Can you get a different VT doc? 

Try Tonic Labyrinthe Reflex or head righting

0:09Left head righting

 

 

I will check that out! Thanks!!  I did to the TLR reflexes already, but I haven't ever checked the head righting.    Unfortunately, we cannot find another vision doc. Although there are several in our area (and one we like much more, even), the place we are at is the only place within a three hour drive that does VT and also accepts our insurance (I called them all...). Our current plan is to get as much as we can out of google searches on VT and the current Vision doc while it's covered by insurance (4ish months of VT is covered), and then go back to the doc that we liked a lot who originally diagnosed, get re-evaluated, and get additional support as needed (crossing our fingers and hoping that it's not needed by then and we will have done enough on our own). I have two kids who need VT, and there's just no way we can drop $5K PER CHILD over the next six months to pay that out of pocket... ?

[ElizabethB]

Here is a book with a lot of different exercises, by a FCOVD doctor.  Organized by type of problem, exercises for each.  A lot of variety in there!

Developing Ocular Motor and Visual Perceptual Skills: An Activity Workbook 1st Edition

by Kenneth Lane OD FCOVD (Author)

https://www.amazon.com/gp/product/1556425953/ref=oh_aui_detailpage_o00_s02?ie=UTF8&psc=1

[PeterPan]

I have the Lane book, and yes it is significant. Visual Portals is exceptional. Really though, you're better off with the VT doc, if they're any good, because you're getting tools and targeting. They have special tools they'll use (flippers with different types of lenses, etc.), and you want to know what you need to work on and what you can skip so you're not just working on everything endlessly and getting nowhere due to non-compliance and fatigue on your part.

The issue to me is whether the VT has a strong vision of their capabilities when they're dribbling out two exercises at a time. Now sometimes they do that at the beginning because they want you to FOCUS on that 1-2 and reailly nail 'em, fine. But after that, you want to see 5-6 a week, enough to keep you BUSY, even working at an aggressive pace. You want to see that you're making progress, not hitting walls. It should be therapy, not fairy, kwim? 

So it's just something to watch. If you have to go out of network and just do one child, then you do. At the place we used they had a therapy notebook you bought, so you could easily do all your children once you got the routine with one. Not ideal, but in theory you could. So practices are really going to vary in how they roll, how much they do in-office, etc.

[Lecka]

It depends on the situation and on insurance, but with my oldest son, insurance would pay for OT but not for VT for him, and the VT said that he would do similar things in either one.  The VT said some kids would do better with one or the other and it wasn’t always possible to predict, so he said if there wasn’t improvement with OT I could try VT later.  

Anyway my son did well with OT and it was covered.  

For just vision he had tracking issues where his eyes would “jump” at the midline.  So midline exercises in OT could help him.  

I was only concerned with reading at the time and so I was focused on that, but it turned out he had more OT things and OT was helpful for him.  

The OTs said there was one vision thing they couldn’t treat or rule out, with my son, and recommended I see a VT for that.  I think that was for convergence insufficiency.  My son didn’t have convergence insufficiency when he was this age (8).  When he was younger (6) he had some mild signs of CI that he grew out of.  

It’s hard to say though — I think where I lived more OTs did retained reflexes than in other places, and the VT didn’t do them, he only did eye exercises.  I think this varies a lot by location.  

But then later when my son was in 5th grade he had another retained reflex.  I don’t know the name but he did the “starfish” exercise.  I am pretty sure he was checked for it when he was younger.  

I have never kept up as much with this stuff, it’s always come up for me while I needed to focus on a different set of things with my younger son.