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Just wanted to cry in OT today


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#51 ktgrok

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Posted 09 November 2017 - 07:23 AM

 

I wanted to cry. I just do NOT get it. I don't understand how she can memorize the placement of these items, easily name all of them (except for ones she wasn't familiar with), but knowing the names of the letters is just beyond her. 

 

 

It's called Dyslexia. It's not about memory, and it's not about visual memory for sure. 

 

The research I'm finding says we store letters in our head as auditory memories, not visual. Some kids for whatever reason struggle with this, probably due to brain differences (that correlate with strengths in other areas) and they need to be explicitly taught phonemic awareness skills to a high level before they can learn letters/reading. 

 

Hugs. 

 

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#52 Lecka

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Posted 09 November 2017 - 07:42 AM

For the ADHD question ----- sometimes it helps to have a behavior rating scale filled out by different people who are often around her. That gets around her acting unusual at the appointment.

Sometimes though -- the appointment is adjusted in a way, because it is new, unusual, different, for every kid, so every kid is going to react like they are in a new place.

At the same time -- observation scales can be a way to get around that.

If you have observation scales results as part of her paperwork, you can look at it or ask your OT or speech therapist if they are able to look at it. Or you might be able to look it up.

Just a suggestion because this was helpful with my older son.

He ended up showing an elevated level related to anxiety and it was helpful to know about and hadn't been on my radar at all, and then we did it again later and the anxiety-ish scores were lower the second time. So then it was like -- a way to know we were on the right track.

#53 Heathermomster

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Posted 09 November 2017 - 08:49 AM

In OT today, my daughter mentioned to her therapist that "Mom is teaching me to read and write!" I clarified that she has been resistant and she has asked for me to teach her "on her birthday", no other day. 
Anyway, he decided to pull out a Mystery Alphabet Box game. She was supposed to pull items out of the box, say the name, and put it on the letter that it starts with. 
 

That went over like a lead balloon. I knew it would be a disaster. 

We did the activity and aside from the letters A, O, R, X and Z, she had to sing and touch the alphabet to figure out where the item needs to go. I hated how frustrated she was. 
 

Unless the OT is a qualified O-G reading specialist, he needs to back off.

 

When a student learns to read, they learn what a phonogram sound makes first, and then map that sound to the letter

 

If she hasn't mapped the phonogram sound first, she cannot possibly match the sound to a letter.  

 

Your girl is 5 yo and doesn't know her letter sounds.  Direct, multisensory instruction will take care of that.


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#54 Southern Ivy

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Posted 09 November 2017 - 09:32 AM

The online symptom lists you read are crock. People put them on, but those symptom lists are the same for 20 other things. I'm speaking in hyperbole here. Those lists are like saying you cough and trying to decide if it's hay fever, a cold, pneumonia, or cancer. Those are really different things, but they all have a cough!

 

The thing that DIFFERENTIATES the APD issue from all the rest is the extreme difficulty discriminating targets in background noise. So does she or doesn't she have that issue? In the most severe cases, they'll even have issues discriminating the target in a *quiet* room if anyone is making noise. That's what an audiologist told me.

 

Now, a few observations. One, I've been told by an audiologist that she sees significant bumps in kids with APD who go on ADHD meds. So you've got the diagnosis, and there's a chance that going on the meds would help not on the ADHD-related issues but also the APD. A significant chance. Like a no way would I NOT be putting that kid on meds kinda chance. If that much is on the table, if there's the possibility of APD so severe that it's affecting her ability to acquire language (which is what you're saying is going on with those CELF scores), then you want her to have ALL the tools.

 

And for the record, I'm one of the most outspoken, wait on ADHD meds as long as you can, people on the entire board. And that would really be on the table for me. That just makes sense, because you want ALL the tools.

 

Iirc you had enough evidence of other things that you really wondered whether the IQ was correct. I don't know. There is a correlation with ID and APD, sigh, but also it makes you wonder how much the language issues are just flat pulling that IQ score down. Kids will have major jumps with intervention sometimes. Somebody could do a non-verbal IQ test like the TONI on her. Again, that's where I'd be asking what all that place in CO brings to the table. I don't know anything about them, just suggesting stuff to ask as you sort it out. I would be asking how their version of the SCAN works and how the language issues would affect it. The SCAN stuff I was in used language, but it seemed pretty straightforward. I don't know. 

 

So you're saying they're using hearing aids with filters? When you say filters, what are they doing? It would be interesting to know how much working on those retained reflexes will help. Surprised it's only one, frankly. That seems improbable.

 

How much speech are you getting? That's some pretty significant stuff, when you have issues with multi-step instructions, language delay, etc. etc. Is that SLP giving you homework to do at home? Language is where it's at. EVERYTHING for the next 13+ years is going to be held back by language. I think the APD is important if it's affecting her ability to acquire language. What happens if you put on an FM transmitter? People do this. There are some workaround hacks people do, I forget how. Like you use your phone and... I don't remember. 

 

Yes she does. It's incredibly hard for her to be in scenarios with background noise. Even when we are alone and she is looking right at me waiting for an answer, if there is other noise, I have to repeat what I said. 

I fully agree that the language skills brought her IQ score down. I have no doubt on that and I definitely want the non-verbal test done on her. 

Able Kids has developed their own unique testing for children that are under 6. The ones normed for above 6 are more language based, but the ones for children below are a picture response. As long as their receptive language is at 3 years old, they can do the test. 
The filter looks almost like a musicians ear piece. It has a small filter in it that assists in filtering the background noise. They test both ears to see which one is most receptive. Sometimes, neither are, but usually one ear has a higher result than the other. That ear will be fitted for the ear piece. 
Had I not talked to multiple people who have the filter and who have been to Able Kids, had I not read their audiology reports (a couple moms sent them to me), had I not met with someone in my hometown who went, I would be skeptical. As it is, I'm willing to go out there if it will give me answers now, instead of waiting 3 years. 

Please trust me when I say, I have done a ridiculous amount of research on this. I may not have mentioned every sign she has shown us, but there have been so many. This isn't something I've pulled out of the air 2 weeks ago. I've been researching this since August, talking to the SLP, talking to other APD moms, reading books and articles on the topic. I've gone through so many symptoms and scenarios. I've talked to the clinic that we are scheduled to visit. We've weighed the pros and cons. It's definitely not some arbitrary decision to pursue testing. 


Edit to add: 
A lot of this started when I would be working with my daughter one on one. I would ask her something, but if it was noisy (fan, dishwasher, anything), she would say "My ears are hearing you very funny. I don't know what you said." or she will repeat something that sounds VERY similar. She often says "My ears aren't hearing your words right" or "I need to see you to hear you." This was all her own explanation of what her ears were doing, unprompted by me. She's had her hearing tested recently, so I know it's not that. 
So, yeah, when it's noisy, or if she's not reading my lips, she's hearing words wrong or saying "What? Say that again." She's very conscious that something is not working right. 
 

Rereading here. If that psych warned you not to do more testing till she's on meds, then I think you should take that seriously before driving all the way to CO for an APD eval. Part of the reason they wait till 7 is because it requires extreme patience and participation and is tedious and slow. They were shocked my ds could do ANY of it at newly 6, and he was doing double (2 hours) speech therapy sessions at the time. 

 

Speech therapy for your dd is probably with high motivators and reinforcers. Like they're using preferred activities, building in rewards, pairing, etc. to make it go well. The audiologist isn't gonna do ANY of that. Now maybe this place will! But maybe not. Psychs, audiologists, these people just want the kid to show up and be able to sit in the booth or room and do it. 

The psych also told me that she needed a margarita after testing my child. Her lack of professionalism and her very visible frustration with my daughter during the test makes me less likely to appreciate her recommendations, unfortunately. 


Edited by Southern Ivy, 09 November 2017 - 09:59 AM.

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#55 Southern Ivy

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Posted 09 November 2017 - 09:36 AM

Unless the OT is a qualified O-G reading specialist, he needs to back off.

 

When a student learns to read, they learn what a phonogram sound makes first, and then map that sound to the letter

 

If she hasn't mapped the phonogram sound first, she cannot possibly match the sound to a letter.  

 

Your girl is 5 yo and doesn't know her letter sounds.  Direct, multisensory instruction will take care of that.

Preach. I felt like yesterday was a bit of a "test" to see if I was doing my job as a homeschooler. I'll be monitoring if that keeps up. 

Yesterday was very informative for me, but it was very frustrating for her. 

Oh it isn't the sounds. It's just the name and letter identification. He would say the sound, but he would tell her the letter that it started with. ;) 



#56 Heathermomster

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Posted 09 November 2017 - 10:09 AM

Preach. I felt like yesterday was a bit of a "test" to see if I was doing my job as a homeschooler. I'll be monitoring if that keeps up. 

Yesterday was very informative for me, but it was very frustrating for her. 

Oh it isn't the sounds. It's just the name and letter identification. He would say the sound, but he would tell her the letter that it started with. ;)

I didn't realize you felt that he was judging you for homeschooling.  

 

Did you see the book that ktgrok recommended a couple of days ago?  Check out the thread.  



#57 Southern Ivy

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Posted 09 November 2017 - 10:23 AM

I didn't realize you felt that he was judging you for homeschooling.  

 

Did you see the book that ktgrok recommended a couple of days ago?  Check out the thread.  

Mmmm, a bit. He's very amiable, very easy to talk to, but I do find myself guarded when we discuss homeschooling. Just a little feeling I have. 
Right now, because she has been so resistant to anything educational. Preschool did a number on her. By the time we decided to take her out, she was saying she was stupid and not smart like her friends. So, formal education has been pretty much by the wayside. In Missouri, compulsory age is 7, so I'm perfectly legal right now. ;) But, we've been doing more unschooling. If she likes it, we watch videos on it or find a picture book. 
The fact that she is asking to learn to read and write is HUGE. However, she shuts down when we get to the alphabet - wikisticks, painting, ABC body movements, crafts, etc. She does an amazing job of finding the letters, but name recognition is not there. 
 

I did not. I'll go check it out. Thanks. 


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#58 Lecka

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Posted 09 November 2017 - 10:25 AM

If it is part of a practice it is easy to see someone else if you want (probably).

OTs should not be frustrating kids. I mean -- some can't be helped, but it's easy to put away a game a change an activity when they see frustration.

It is just going to make you daughter tense when you take her back next time (possibly at least).

I hate, hate, hate baselining when it seems to mean that kids just get a lot of wrong answers with tepid feedback.

Apparently my insurance really does require it, though. But after baselining, there is no reason for it.

I mean -- yes, some things just are frustrating, but it shouldn't be just frustrating kids by highlighting that they aren't good at something.

#59 Lecka

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Posted 09 November 2017 - 10:28 AM

In the realm of things that are options -- you could politely ask him to move on, or ahead of time say you want to limit frustration wrt letters as that is frustrating for her. You can say "here's a list of the letters she knows, start with those if you want." That might be a better experience; if you might be in situations where letter knowledge is assumed and it might be frustrating for your daughter.

Edit: when they have built trust and a rapport with your daughter, then they are going to be able to push her without it being frustrating -- I have heard often they should be at this point by two months.

Edit: also for a 5-year-old maybe prefer someone who works with pre-school kids, she is still young and a manner that can be great for elementary school age may not be as good.

Edited by Lecka, 09 November 2017 - 10:34 AM.


#60 VinNY

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Posted 09 November 2017 - 10:31 AM

Can you clarify something for me..is the OT and the developmental optometrist  the one and the same person you are speaking about that gave your child that "alphabet' quiz?



#61 Southern Ivy

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Posted 09 November 2017 - 10:37 AM

If it is part of a practice it is easy to see someone else if you want (probably).

OTs should not be frustrating kids. I mean -- some can't be helped, but it's easy to put away a game a change an activity when they see frustration.

It is just going to make you daughter tense when you take her back next time (possibly at least).

I hate, hate, hate baselining when it seems to mean that kids just get a lot of wrong answers with tepid feedback.

Apparently my insurance really does require it, though. But after baselining, there is no reason for it.

I mean -- yes, some things just are frustrating, but it shouldn't be just frustrating kids by highlighting that they aren't good at something.

Totally agree. He really did modify as he went along. He started off with sounds, then moved to letters, then we moved to just object placement memory once he saw how much of a struggle it really was.
I think some of it was seeing if she was just stonewalling me (or to check up on me haha - who knows) or to see if something else was up. He saw something else was up so that was a good thing. 
She said afterwards that she was frustrated, but she did work well during the session. She utilized the skills she has to figure out where items went. Thank God she has great one-to-one correspondence. She would just sing the alphabet until she got to that letter. 

 

In the realm of things that are options -- you could politely ask him to move on, or ahead of time say you want to limit frustration wrt letters as that is frustrating for her. You can say "here's a list of the letters she knows, start with those if you want." That might be a better experience; if you might be in situations where letter knowledge is assumed and it might be frustrating for your daughter.

Edit: when they have built trust and a rapport with your daughter, then they are going to be able to push her without it being frustrating -- I have heard often they should be at this point by two months.

Yeah, they have a very good rapport. He gauges her frustration level and either pushes her (she will give up VERY easily on anything) or he sees when it's time to move on. 
Wednesdays are her favorite because she sees Dave. :) 


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#62 Southern Ivy

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Posted 09 November 2017 - 10:38 AM

Can you clarify something for me..is the OT and the developmental optometrist  the one and the same person you are speaking about that gave your child that "alphabet' quiz?

No. Developmental Optometrist was, gosh, back in June? We saw him once. 

The OT is someone we've been seeing since August. This is the first time he's ever done the alphabet thing. I think it was a spontaneous decision based on her conversation during gross motor exercises. 



#63 Lecka

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Posted 09 November 2017 - 11:48 AM

Well, he sounds good with her :) I'm glad she likes it :)
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#64 kbutton

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Posted 09 November 2017 - 06:53 PM

The online symptom lists you read are crock. People put them on, but those symptom lists are the same for 20 other things. I'm speaking in hyperbole here. Those lists are like saying you cough and trying to decide if it's hay fever, a cold, pneumonia, or cancer. Those are really different things, but they all have a cough!

 

The thing that DIFFERENTIATES the APD issue from all the rest is the extreme difficulty discriminating targets in background noise. So does she or doesn't she have that issue? In the most severe cases, they'll even have issues discriminating the target in a *quiet* room if anyone is making noise. That's what an audiologist told me.

 

The book she referenced is THE BIBLE on APD. Just sayin'. The symptom list might not have been from there, but she's reading the right stuff regardless.

 

Difficulty hearing in noise DOES NOT HAVE TO BE PRESENT to get an APD diagnosis. They test multiple areas, and any one of them falling below the 25%ile can trip a diagnosis. My son's issues with background noise were borderline, yet he was functionally deaf in a noisy place. However, the rate at which he takes in speech was tested at the 2nd percentile. 

FWIW, my son's speech degraded considerably during testing, and they couldn't finish it. It was very odd. Basically when they covered his ears, he couldn't hear himself well enough to make the proper speech sounds, and then they couldn't understand his responses. They got through only part of the SCAN 3 as a result. 

My personal theory on background noise is that at least part of it is related to vestibular stuff--being able to locate sounds correctly in order to separate them in the brain. I have no idea if there is a theory out there like that--it's been too long since I read the book. It's more an impression I have gathered from bits and pieces of information. 

 

For the ADHD question ----- sometimes it helps to have a behavior rating scale filled out by different people who are often around her. That gets around her acting unusual at the appointment.

Sometimes though -- the appointment is adjusted in a way, because it is new, unusual, different, for every kid, so every kid is going to react like they are in a new place.

At the same time -- observation scales can be a way to get around that.

If you have observation scales results as part of her paperwork, you can look at it or ask your OT or speech therapist if they are able to look at it. Or you might be able to look it up.

Just a suggestion because this was helpful with my older son.

He ended up showing an elevated level related to anxiety and it was helpful to know about and hadn't been on my radar at all, and then we did it again later and the anxiety-ish scores were lower the second time. So then it was like -- a way to know we were on the right track.

:iagree:


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#65 Storygirl

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Posted 09 November 2017 - 07:28 PM

Mary, I think if you see signs that it could be an auditory processing disorder, that you will want to pursue that line of testing.

 

But I also want to emphasize that I see red flags for dyslexia in all of your posts. Please don't forget to look into that, because dyslexia and auditory processing can have some of the same symptoms. And the CTOPP should give you a clear answer on how her phonological processing is (dyslexia is a phonological disorder). Once she turns 6 -- or whatever the minimum age is -- it wouldn't be a bad idea to get that test.

 

By age five, I really knew that DD12 had dyslexia, but I didn't know how to test for it, and the people that I asked didn't steer me in the right direction. DD didn't have her diagnosis until she was 10. I wish I had received good advice earlier, because early intervention makes a huge difference.


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#66 Southern Ivy

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Posted 09 November 2017 - 07:32 PM

The book she referenced is THE BIBLE on APD. Just sayin'. The symptom list might not have been from there, but she's reading the right stuff regardless.

 

Difficulty hearing in noise DOES NOT HAVE TO BE PRESENT to get an APD diagnosis. They test multiple areas, and any one of them falling below the 25%ile can trip a diagnosis. My son's issues with background noise were borderline, yet he was functionally deaf in a noisy place. However, the rate at which he takes in speech was tested at the 2nd percentile. 

FWIW, my son's speech degraded considerably during testing, and they couldn't finish it. It was very odd. Basically when they covered his ears, he couldn't hear himself well enough to make the proper speech sounds, and then they couldn't understand his responses. They got through only part of the SCAN 3 as a result. 

My personal theory on background noise is that at least part of it is related to vestibular stuff--being able to locate sounds correctly in order to separate them in the brain. I have no idea if there is a theory out there like that--it's been too long since I read the book. It's more an impression I have gathered from bits and pieces of information. 

 

:iagree:

Oh wow!! That's crazy. I guess the test came back inconclusive then? How frustrating for you all. :( 
I do wonder, if he were to do testing again, if he could complete it with an ear filter from Able Kids in his ear. (Just my random musings)


And yeah, between that book and Like Sound Through Water, I do feel pretty confident in what I'm seeing. I had gone through lists of CAPD signs, and I was pretty iffy on it as an issue, until I read When the Brain Can't Hear. I was reading parts to my husband and mom and they couldn't believe how accurately it described her. 
I've been reading on the 4 types of auditory processing and it's very fascinating. 

 


Edited by Southern Ivy, 09 November 2017 - 07:44 PM.


#67 Southern Ivy

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Posted 09 November 2017 - 07:40 PM

Mary, I think if you see signs that it could be an auditory processing disorder, that you will want to pursue that line of testing.

 

But I also want to emphasize that I see red flags for dyslexia in all of your posts. Please don't forget to look into that, because dyslexia and auditory processing can have some of the same symptoms. And the CTOPP should give you a clear answer on how her phonological processing is (dyslexia is a phonological disorder). Once she turns 6 -- or whatever the minimum age is -- it wouldn't be a bad idea to get that test.

 

By age five, I really knew that DD12 had dyslexia, but I didn't know how to test for it, and the people that I asked didn't steer me in the right direction. DD didn't have her diagnosis until she was 10. I wish I had received good advice earlier, because early intervention makes a huge difference.

What signs are raising a red flag for you? 
When I have looked at early signs of dyslexia, I was pretty "meh" about it as a diagnosis. It's always been in the back of my mind, but aside from the alphabet issue and rhyming, none of the other signs that I looked up for dyslexia stood out to me. 
(I hope that doesn't sound snarky. I really am curious.)

DH and I talked today and we'll get the CTOPP in December. I figure, if nothing else, it's another piece of the puzzle. 

 



#68 Terabith

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Posted 09 November 2017 - 07:47 PM

The lack of phonemic awareness (rhyming) and inability to learn letter sounds are pretty solid dyslexia clues.  Now, the dyslexia may be as well as APD.  And if there is something you can do about it (the filters), then maybe that's a path to take.  But I think I'd be looking into starting LIPS.


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#69 Storygirl

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Posted 09 November 2017 - 07:53 PM

It's the phonological processing problems that you mention that are the red flags. Although the other symptoms that you mention in your list of CAPD symptoms have a lot of crossover with dyslexia.

 

Phonological processing disabilities are at the root of dyslexia. And you are describing phonological troubles.

 

I just looked up your previous thread about her trouble with the alphabet, because I had that in mind, as well as what you have been posting in this thread. I lost the link as I tried to post it here (on my way out the door, so I don't have time to try again), but you might want to re-read it. I say a lot of things in that thread that I would repeat for you in this one. It's five or six pages back on the LC board.


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#70 kbutton

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Posted 09 November 2017 - 07:57 PM

Oh wow!! That's crazy. I guess the test came back inconclusive then? How frustrating for you all. :( 
I do wonder, if he were to do testing again, if he could complete it with an ear filter from Able Kids in his ear. (Just my random musings)


And yeah, between that book and Like Sound Through Water, I do feel pretty confident in what I'm seeing. I had gone through lists of CAPD signs, and I was pretty iffy on it as an issue, until I read When the Brain Can't Hear. I was reading parts to my husband and mom and they couldn't believe how accurately it described her. 
I've been reading on the 4 types of auditory processing and it's very fascinating. 

 

 

No, he got a diagnosis. Tripping 2nd percentile on one test and being borderline 25% on a bunch were enough combined with his symptoms and presentation. 

 

I have wondered about Able Kids before. DS tried specially programmed hearing aids for a bit (filtered some stuff), but the audiologist was not straightforward with us about this, and we could not continue. They seemed to help a great deal. 


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#71 Southern Ivy

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Posted 09 November 2017 - 08:05 PM

The lack of phonemic awareness (rhyming) and inability to learn letter sounds are pretty solid dyslexia clues.  Now, the dyslexia may be as well as APD.  And if there is something you can do about it (the filters), then maybe that's a path to take.  But I think I'd be looking into starting LIPS.

Yeah, they're both pretty solid overlaps with those symptoms.

There's a school of thought (*cough*Barton*cough*) that says that CAPD is just dyslexia by another name. The CAPD community solidly disagrees. But, regardless of the stance, since so much of it is a brain issue, I'm not surprised at the overlap. 
In the CAPD Facebook group I'm in, a few of the kids have dyslexia and CAPD and some have been thought to have dyslexia, but testing was negative, so they tested for CAPD and that came back positive. There's a whole gamut, which, again, isn't surprising. 


(As for the letter sounds, she's not having trouble with letter sounds right now. We haven't even gotten that far. Right now, she can't even remember the name of the letter. She can easily identify them if told "find this letter" and given a picture. If I said, "Find the B", she'd be lost.  She can easily match the upper/lower case of all the letters. She can find the matches faster than I can in ABC Spot It. But, she can't tell you the name of them.) 

 



#72 Southern Ivy

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Posted 09 November 2017 - 08:11 PM

No, he got a diagnosis. Tripping 2nd percentile on one test and being borderline 25% on a bunch were enough combined with his symptoms and presentation. 

 

I have wondered about Able Kids before. DS tried specially programmed hearing aids for a bit (filtered some stuff), but the audiologist was not straightforward with us about this, and we could not continue. They seemed to help a great deal. 

DH is pretty set on us going, so I'll give you an update in February...if I remember. haha 

This girl is older (not sure how old your son is), but as an adult, she opted to get the filter. I found her experience very interesting. 
Here's the link if you're interested. 


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#73 Southern Ivy

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Posted 09 November 2017 - 08:26 PM

It's the phonological processing problems that you mention that are the red flags. Although the other symptoms that you mention in your list of CAPD symptoms have a lot of crossover with dyslexia.

 

Phonological processing disabilities are at the root of dyslexia. And you are describing phonological troubles.

 

I just looked up your previous thread about her trouble with the alphabet, because I had that in mind, as well as what you have been posting in this thread. I lost the link as I tried to post it here (on my way out the door, so I don't have time to try again), but you might want to re-read it. I say a lot of things in that thread that I would repeat for you in this one. It's five or six pages back on the LC board.

Reading again now. :) 



#74 kbutton

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Posted 09 November 2017 - 09:02 PM

DH is pretty set on us going, so I'll give you an update in February...if I remember. haha 

This girl is older (not sure how old your son is), but as an adult, she opted to get the filter. I found her experience very interesting. 
Here's the link if you're interested. 

Very compelling. I will have to check out her blog as well! Thanks!


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#75 OhElizabeth

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Posted 09 November 2017 - 11:43 PM

Kbutton, my point was not that those things aren't symptoms. It's that they're symptoms on 15 other lists too. And what I've been told is that the issue with background noise is present in the *majority* of cases, making it a strong differentiator, something that, if present, would be a huge, huge, huge flag to go that direction in testing.



#76 OhElizabeth

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Posted 09 November 2017 - 11:45 PM

DH is pretty set on us going, so I'll give you an update in February...if I remember. haha 
 

 

I missed how this happened, but I'm excited for you! How close will she be to 6? If she's going to be close by that point, like within a month or something, it could be worth waiting. Or not. But we waited, because crossing over to 6 let the psych run more tools to get more diagnosed. 

 

Well I hope they dig in and start to get stuff figured out! It may take time and have layers.



#77 OhElizabeth

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Posted 09 November 2017 - 11:46 PM

DH and I talked today and we'll get the CTOPP in December. I figure, if nothing else, it's another piece of the puzzle. 

 

 

It sounds like he's really getting on board! So who will run this for you? What else will they run? 



#78 OhElizabeth

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Posted 09 November 2017 - 11:50 PM

Mmmm, a bit. He's very amiable, very easy to talk to, but I do find myself guarded when we discuss homeschooling. Just a little feeling I have. 
Right now, because she has been so resistant to anything educational. Preschool did a number on her. By the time we decided to take her out, she was saying she was stupid and not smart like her friends. So, formal education has been pretty much by the wayside. In Missouri, compulsory age is 7, so I'm perfectly legal right now. ;) But, we've been doing more unschooling. If she likes it, we watch videos on it or find a picture book. 
The fact that she is asking to learn to read and write is HUGE. However, she shuts down when we get to the alphabet - wikisticks, painting, ABC body movements, crafts, etc. She does an amazing job of finding the letters, but name recognition is not there. 
 

I did not. I'll go check it out. Thanks. 

 

Have you done typical preschool stuff with her, like the MFW preschool activity cards? I think I did them with my ds around that age. I particularly like them, because they bring in some activities like sorting, categorizing, etc. that can be good. I think your more interactive approach sounds really good. Curriculum is not the most important thing, especially with a child with a diagnosed language delay, no matter what the cause of the language delay is. The Most Important thing you can be doing together is working together on language. Huge payoff there. Playing games, doing things that build language, whether it's following instructions, categorizing, wh-questions, rhyming, sequencing activities, etc. all good. Sequencing would be fab with her right now. Like little workbooks or manipulatives from Lauri with pictures you sequence and make little stories for. 

 

Definitely play and definitely focus on language.



#79 OhElizabeth

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Posted 10 November 2017 - 12:00 AM

Yes she does. It's incredibly hard for her to be in scenarios with background noise. Even when we are alone and she is looking right at me waiting for an answer, if there is other noise, I have to repeat what I said. 

I fully agree that the language skills brought her IQ score down. I have no doubt on that and I definitely want the non-verbal test done on her. 

Able Kids has developed their own unique testing for children that are under 6. The ones normed for above 6 are more language based, but the ones for children below are a picture response. As long as their receptive language is at 3 years old, they can do the test. 
The filter looks almost like a musicians ear piece. It has a small filter in it that assists in filtering the background noise. They test both ears to see which one is most receptive. Sometimes, neither are, but usually one ear has a higher result than the other. That ear will be fitted for the ear piece. 
Had I not talked to multiple people who have the filter and who have been to Able Kids, had I not read their audiology reports (a couple moms sent them to me), had I not met with someone in my hometown who went, I would be skeptical. As it is, I'm willing to go out there if it will give me answers now, instead of waiting 3 years. 

Please trust me when I say, I have done a ridiculous amount of research on this. I may not have mentioned every sign she has shown us, but there have been so many. This isn't something I've pulled out of the air 2 weeks ago. I've been researching this since August, talking to the SLP, talking to other APD moms, reading books and articles on the topic. I've gone through so many symptoms and scenarios. I've talked to the clinic that we are scheduled to visit. We've weighed the pros and cons. It's definitely not some arbitrary decision to pursue testing. 


Edit to add: 
A lot of this started when I would be working with my daughter one on one. I would ask her something, but if it was noisy (fan, dishwasher, anything), she would say "My ears are hearing you very funny. I don't know what you said." or she will repeat something that sounds VERY similar. She often says "My ears aren't hearing your words right" or "I need to see you to hear you." This was all her own explanation of what her ears were doing, unprompted by me. She's had her hearing tested recently, so I know it's not that. 
So, yeah, when it's noisy, or if she's not reading my lips, she's hearing words wrong or saying "What? Say that again." She's very conscious that something is not working right. 
 

The psych also told me that she needed a margarita after testing my child. Her lack of professionalism and her very visible frustration with my daughter during the test makes me less likely to appreciate her recommendations, unfortunately. 

 

People believe you! What you're saying now is the stuff that's distinct, that isn't explained by dyslexia, ADHD, language delays, etc. etc. 

 

The tech AbleKids is developing sounds fascinating! That will be amazing to see how it works. I can see why you're excited! And to have your dh on board now, that's huge. I missed it, how did that happen? Researching stuff online is such a process, because you learn things till it all clicks in your mind and you're really convinced. Meanwhile the non-researching spouse is behind, trying to figure out how you got there and what to make of it, lol. And sometimes that click, where it all comes together and is obvious, is overnight.

 

Well good. And it's not that anybody disbelieved you, really and truly. It's more like if you were trying to sort out whether it was worth it to make a big trip, you would look for what differentiates it. You've got those things, so you've got such a STRONG PROBABILITY that you're nailing it that you are very, very, very on-track and wise. The stuff you're saying is HUGE. And just to get good evals will be huge. 

 

So why February? Are they that backed up? I guess that's a good sign. What do they want before then? I'm just curious, more than anything. And what do they run? Will they do sort of multi-factorial and do more evals (SLP, OT, pysch, etc.), or do they do just audiology? 

 

Part of what you're doing here, besides figuring out how to help her is creating paper trail for an IEP. Not that she needs one now, but it could happen. In our state, an IEP gets you access to a significant disability scholarship program. Maybe your state has something like that even or services that you would want to access. Like once you get that hearing support going, it would be nice to have a plan with an SLP for the language. Do you have SLP now? Or that is something on the table or not on the table? 

 

Well good. It sounds like you've gone through the transformation from what is going on to this is going on, and everyone in the house is onboard and making it happen. That's AWESOME.



#80 OhElizabeth

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Posted 10 November 2017 - 12:07 AM

Preach. I felt like yesterday was a bit of a "test" to see if I was doing my job as a homeschooler. I'll be monitoring if that keeps up. 

Yesterday was very informative for me, but it was very frustrating for her. 

Oh it isn't the sounds. It's just the name and letter identification. He would say the sound, but he would tell her the letter that it started with. ;)

 

Yeah, you were way more polite than I would be.

 

So, just to back up, because I can't remember, did she pass the Barton screening? If she didn't and she's over 5, it would be fair game to consider LIPS or FIS. Personally I'd go LIPS. 

 

Also, are there any modifications *now* you can make to make it easier for her to work together? You know from your reading that there are categories of APD, but that background noise is the most obvious issue that you can work to improve/isolate or structure around. Like the roku has cordless headphones, so she could watch documentaries with headphones and get the input directly, that kind of thing. Do the filtering aids seem to be a fix or a better? Will she need more supports on top of them? And then, just out of curiosity, do they wear them full-time or only at certain times? Do they have issues with becoming *more* sensitive when they don't have them in? For instance, with autism they'll talk about hearing protection (which it sounds like might sort of function similarly) and they caution you to only wear them so many hours a day. I'm curious to figure out what the AK devices are doing, etc.



#81 OhElizabeth

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Posted 10 November 2017 - 12:12 AM

Yeah, I can see why you were offended by the margarita thing. On the other hand, to me, it's not personal or offensive. Like me, I'm used to my kid, so if somebody says that to me, I'm gonna go wow he's WAY harder for other people to work with than I realized. It's not my fault, because he has a disability. It's a statement of how severe the disability is. There are kids who are that hard to work with EVEN IF THE PERSON IS AWESOME. Like for workers we bring in, they NEVER want to do more than 3-4 hours. Never ever ever. Because challenging kids burn people out. 

 

So, I don't know, but it's just something to think about. Hopefully one day you'll have enough assessment from a kinder, more thorough source that you'll come to peace with it. She's probably an awesome kid. My kid is an awesome kid. It just happens that my kid is astonishingly hard to work with sometimes. 

 

You're definitely doing the right thing stepping up evals. It will take time. It won't be one piece, one label, one explanation. You're going to have layers. You might look into genetics. I don't know, I'm just really into that right now. Genes for Good will do the testing for free. Who knows what might pop up. Can't do her, but you could do you and the father.

 

So what is AK's take on meds?



#82 kbutton

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Posted 10 November 2017 - 10:28 AM

Kbutton, my point was not that those things aren't symptoms. It's that they're symptoms on 15 other lists too. And what I've been told is that the issue with background noise is present in the *majority* of cases, making it a strong differentiator, something that, if present, would be a huge, huge, huge flag to go that direction in testing.

 

I am glad you are clarifying, but that is not at all how I read it or re-read it now. 

 

She's ringing every APD bell that my son did and then some. I get that she's also ringing all the dyslexia bells and ADHD bells too. 

 

OP, I know the testing in a booth is ideal, but you might find a psychologist who has and will run SCAN 3 on a computer, and it can be super helpful. My son had it done both ways a couple of years apart. The first time was when he was your daughter's age, and it lit up all over the place. The booth test was to formalize that something was going on when we really hit a lot of problems. He didn't end up being Dx with dyslexia, but his spelling is...interesting...and he does flag a few spots on the CTOPP. He does have ADHD as well. It's just not straightforward! 

 

I have seen the Able Kids site numerous times and have really wished it were closer to give it a try.


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#83 Southern Ivy

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Posted 10 November 2017 - 11:22 AM

I missed how this happened, but I'm excited for you! How close will she be to 6? If she's going to be close by that point, like within a month or something, it could be worth waiting. Or not. But we waited, because crossing over to 6 let the psych run more tools to get more diagnosed. 

 

Well I hope they dig in and start to get stuff figured out! It may take time and have layers.

She turns 6 at the end of April. We're going at the beginning of February. 

 

It sounds like he's really getting on board! So who will run this for you? What else will they run? 

There is a dyslexia center in the larger city near us. I am only asking for the CTOPP at this point. I think it will be good to include in the info for the audiologists. They're already getting all of our psych, speech, and OT reports. What's one more? lol
I don't think they can do any other testing right now, if I'm remember correctly from when I talked to them back in June. 

 

Have you done typical preschool stuff with her, like the MFW preschool activity cards? I think I did them with my ds around that age. I particularly like them, because they bring in some activities like sorting, categorizing, etc. that can be good. I think your more interactive approach sounds really good. Curriculum is not the most important thing, especially with a child with a diagnosed language delay, no matter what the cause of the language delay is. The Most Important thing you can be doing together is working together on language. Huge payoff there. Playing games, doing things that build language, whether it's following instructions, categorizing, wh-questions, rhyming, sequencing activities, etc. all good. Sequencing would be fab with her right now. Like little workbooks or manipulatives from Lauri with pictures you sequence and make little stories for. 

 

Definitely play and definitely focus on language.

Ooh! I like those cards. I'll have to get them when we get paid again. 

We were doing pre-reading AAR, but there was so much resistance that I decided it was better to stop and just try to build up her love of learning with other things. Then, bring in the hard stuff later. So, I guess you could say we've been unschooling these last couple of months. We go on nature walks and make picture with the items we find, we play games, we watch Magic School Bus and then read books or watch videos on the things she finds interesting in MSB, we do a lot of reading and listen to audiobooks when we are driving to and from speech/OT (so she's getting 4 hours of audiobooks a week, which is good training. She may not understand it all, but she's listening).  
She's totally fine with sorting, categorizing, etc. We do it, but she's like "meh, whatelse you got?" lol We do tangrams, shape blocks, puzzles (she can look at the pictures and build it - good visual/spatial skills). 
We've been working on rhyming. I threw some rhymes at her last night from a phonemic awareness test - "cat see" "dog hog" etc. She only missed one, so that's good. She can hear the rhyme, but telling me what the rhyming portion is is still a developing skill. 

My friend send me Shiller Math, so we've just recently started that. 

**I was going to say that she was able to sequence the events of Jumanji the other day when we listened to it on tape. I was just thinking "She really heard it!", but now I'm remembering that she was looking through the book while we listened. So, I'm betting that she was going off visual memory instead of auditory. Either way, she sequenced the heck out of it! 
We do need to do more sequencing though. 

 

People believe you! What you're saying now is the stuff that's distinct, that isn't explained by dyslexia, ADHD, language delays, etc. etc. 

 

The tech AbleKids is developing sounds fascinating! That will be amazing to see how it works. I can see why you're excited! And to have your dh on board now, that's huge. I missed it, how did that happen? Researching stuff online is such a process, because you learn things till it all clicks in your mind and you're really convinced. Meanwhile the non-researching spouse is behind, trying to figure out how you got there and what to make of it, lol. And sometimes that click, where it all comes together and is obvious, is overnight.

 

Well good. And it's not that anybody disbelieved you, really and truly. It's more like if you were trying to sort out whether it was worth it to make a big trip, you would look for what differentiates it. You've got those things, so you've got such a STRONG PROBABILITY that you're nailing it that you are very, very, very on-track and wise. The stuff you're saying is HUGE. And just to get good evals will be huge. 

 

So why February? Are they that backed up? I guess that's a good sign. What do they want before then? I'm just curious, more than anything. And what do they run? Will they do sort of multi-factorial and do more evals (SLP, OT, pysch, etc.), or do they do just audiology? 

 

Part of what you're doing here, besides figuring out how to help her is creating paper trail for an IEP. Not that she needs one now, but it could happen. In our state, an IEP gets you access to a significant disability scholarship program. Maybe your state has something like that even or services that you would want to access. Like once you get that hearing support going, it would be nice to have a plan with an SLP for the language. Do you have SLP now? Or that is something on the table or not on the table? 

 

Well good. It sounds like you've gone through the transformation from what is going on to this is going on, and everyone in the house is onboard and making it happen. That's AWESOME.

 

I had joined a CAPD group and I noticed several posts saying "We are not to discuss the Able Kids filters here. There is another group." Me, being naturally rebellious, wanted to know what was "forbidden" and confined to a different group, so I sought it out.
(The rule to not talk about it is because 1) not everyone agrees with the concept that you can test before 8. I mean, Australia frequently diagnosis earlier, but the US is pretty staunch on not testing before hand. 2) in the grand scheme of things, it's a small handful of people who choose to go, so they don't the support group monopolized by the questions. I get that.)

I did a lot of searches in the the regular CAPD group and the Able Kids group and learned more about it and approached DH about it. I asked him if he'd ever be willing to fly to Colorado to have her tested. I explained the filter and the testing and he said "Yeah, I would absolutely do that. Too bad we have to wait until she's older." Totally jumped on that - "Well, actually...." So, he said to call them and get an appointment asap(ish). 

As for the timing, he has lots of projects and trips at the end of the year/beginning of the year. He really wants to go, so February worked best with his schedule. Also, it gives us time to get money saved for the trip and the appointment (and filter if she is a candidate). 
Able Kids does not accept insurance for a variety of reasons, but they do have a scholarship program for those who need it. They do provide you with the codes so you can file to your insurance independently. 
They are typically booked 3 months in advance, so we could have had a December appt, but Feb worked better for us. 

What do they want before then? As in testing? Nothing really. They do ask that if we can, to send in psych/speech/audiology reports - anything we have as it helps them gauge better what they're looking for, what others have seen. (We also need to send in a detailed history...which reminds me...I still need to do that.) 
I'm honestly not sure what to call what they run. I know it's a test that was developed specifically for their clinic. There is a normed language based test for older kids. The younger kids testing is for ages 3-5 (and they will run this so long as the receptive language is 3years.) Several people I have talked to say it's hard to explain, but it's just very different from the other tests their kids took at other audiologists. 
CAPD is their specialty and all they focus on. 

Yes, we see an SLP for 30min/2x a week. One of the reasons why I'm really want to either get this dx (or find out that we don't have it), is that it will open more doors for us in regards to therapy and insurance. As it is, my SLP can not work on the alphabet or letter sounds right now. It's considered academic assistance and insurance won't pay. IF we have the CAPD dx, then it suddenly becomes "payable". 
I know I can work on the sounds and letters myself, but sometimes having that extra help is nice. ;) 


 

Yeah, you were way more polite than I would be.

 

So, just to back up, because I can't remember, did she pass the Barton screening? If she didn't and she's over 5, it would be fair game to consider LIPS or FIS. Personally I'd go LIPS. 

 

Also, are there any modifications *now* you can make to make it easier for her to work together? You know from your reading that there are categories of APD, but that background noise is the most obvious issue that you can work to improve/isolate or structure around. Like the roku has cordless headphones, so she could watch documentaries with headphones and get the input directly, that kind of thing. Do the filtering aids seem to be a fix or a better? Will she need more supports on top of them? And then, just out of curiosity, do they wear them full-time or only at certain times? Do they have issues with becoming *more* sensitive when they don't have them in? For instance, with autism they'll talk about hearing protection (which it sounds like might sort of function similarly) and they caution you to only wear them so many hours a day. I'm curious to figure out what the AK devices are doing, etc.

 

She did not pass the screening. She was iffy on the first 2 sections, but the last section was impossible. The multi-step directions just did not work with her and having to listen to the sounds, decided which color to put where each time? It was a trainwreck. I did 2 and stopped. 
(Her SLP is integrating APD listening skills into therapy right now. She's making her listen to different sounds (bell, drum) (bell, bell) (3 snaps, 4 snaps) etc and having her determine if they are the same or different. I believe they've moved on to rhythms, she's about 65% accurate on those right now. It takes a lot of concentration for her. 

She loves the Roku headphones, especially if DH and I are talking. After awhile, she says her ears are tired, though and she'll stop using them.  

The filters are an aid, like an FM system. They don't change how she hears things, but more - somehow - helps her filter the sounds better. You wear them full-time - except in the water (so swim lessons will still be a bit challenging for her). I don't think there is an issue of becoming more sensitive when they're out. I do know that there is definitely an adjustment period having them in, almost like if you had hearing aids for the first time - your brain is just having to make sense of all the new input and it's overwhelming/tiring. 

I don't know if you saw the link I posted above, but this girl got her filter as a 20-something and it's fascinating how it helps her. 

 

 

Yeah, I can see why you were offended by the margarita thing. On the other hand, to me, it's not personal or offensive. Like me, I'm used to my kid, so if somebody says that to me, I'm gonna go wow he's WAY harder for other people to work with than I realized. It's not my fault, because he has a disability. It's a statement of how severe the disability is. There are kids who are that hard to work with EVEN IF THE PERSON IS AWESOME. Like for workers we bring in, they NEVER want to do more than 3-4 hours. Never ever ever. Because challenging kids burn people out. 

 

So, I don't know, but it's just something to think about. Hopefully one day you'll have enough assessment from a kinder, more thorough source that you'll come to peace with it. She's probably an awesome kid. My kid is an awesome kid. It just happens that my kid is astonishingly hard to work with sometimes. 

 

You're definitely doing the right thing stepping up evals. It will take time. It won't be one piece, one label, one explanation. You're going to have layers. You might look into genetics. I don't know, I'm just really into that right now. Genes for Good will do the testing for free. Who knows what might pop up. Can't do her, but you could do you and the father.

 

So what is AK's take on meds?

Yeah, I mean, I sat in the room with them during the test. She was AWFUL. I have never, EVER seen her act the way she did for the psych. 
I mean, from my own observations at that point and the actions in the testing, I am not surprised that she was dx with ADHD.  I do wonder how she would test now. 
So much has changed for her since then, though. She's no longer in the preschool where there was no structure. (The teacher was not doing a good job, come to find out.) Her actions were copies of a very wild, uncontrolled little boy in her class and she was pretty much imitating him during the session. 

(One of the CAPD moms said "I even made my daughter appear ADHD on an eval. bc I was answering it according to her APD. But the therapist questioned me and we both knew she was nothing close to ADHD but I answered the questions under the wrong mindset". 

So, knowing what I know now and having noticed how she responds to things, I wonder if I would mark her differently. 

We are planning on testing with another psych next year. He works with the dyslexia center where dd will get the CTOPP. We could have had him evaluate her this past July, but we opted to wait since she had just had her other testing. I will probably email him again after we go to Able Kids to see about getting more testing. I am specifically going to ask him for the non-verbal IQ test, though. 

AKs take on meds..ummm... fine with it? I *think* they will test with. I know they test without. 
They said that it was ok to continue the supplement we give my daughter.
We give her a half-serving of Advocare Spark (a supplement drink) and it really seems to help her focus.
(a half serving has 60mg of caffeine  - it helps some with CAPD; of course, as it's a stimulant, it helps with ADHD. Again, not sure which, but the caffeine and vitamins seem to help.) 

Fascinating on the genetic thing. I'll look into that group.



#84 Southern Ivy

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Posted 10 November 2017 - 11:29 AM

I am glad you are clarifying, but that is not at all how I read it or re-read it now. 

 

She's ringing every APD bell that my son did and then some. I get that she's also ringing all the dyslexia bells and ADHD bells too. 

 

OP, I know the testing in a booth is ideal, but you might find a psychologist who has and will run SCAN 3 on a computer, and it can be super helpful. My son had it done both ways a couple of years apart. The first time was when he was your daughter's age, and it lit up all over the place. The booth test was to formalize that something was going on when we really hit a lot of problems. He didn't end up being Dx with dyslexia, but his spelling is...interesting...and he does flag a few spots on the CTOPP. He does have ADHD as well. It's just not straightforward! 

 

I have seen the Able Kids site numerous times and have really wished it were closer to give it a try.

No one around here will test her right now. Losers. :( 

Yeah, I'm definitely not shutting the door on dyslexia or ADHD. I mean, she could very well have all three. But, based on all of the signs I have right now, APD fits more so than dyslexia.

APD spelling is very interesting from all I've seen. The line between dyslexia and APD is so fine and gray sometimes.  



#85 Lecka

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Posted 10 November 2017 - 11:32 AM

Now -- not disputing anything!!!!!!

But -- there is no "reading method" for ADHD or APD, right? You are still going to need a reading method?

As far as a reading method ---- not getting into any associations (by which I mean -- having "dyslexia" mean 20 things associated with dyslexia, but that aren't just "phonological weakness") to go along with needing a certain reading method ----- your daughter is a textbook case of fitting the "phonological hypotheses" for dyslexia.

The author Sally Shaywitz is a professor at Yale, her specialty is reading, and she did some brain scans showing brain activation as weaker in certain regions that measure phonological processing (or something like that).

Then this relates to the "learning to read process."

At this level -- your daughter fits this.

When it gets into -- associated traits, or "well why does she have the weaker brain activation?" -- there I am not saying "dyslexia." I don't know.

But specifically for learning to read -- this seems to completely fit your daughter.

Sally Shaywitz has a book called Overcoming Dyslexia, that is a bit dated now and is not the end-all be-all or anything.....

But the beginning of it describes the phonological hypothesis and that is what people are meaning here.

For my son -- I read the same "brain can't hear, sound through water" books when my older son was 5. For us personally -- it didn't fit him anymore when he was 8! Would have still fit some while he was a younger 7. So we are in that group where -- we are the reason they don't want to diagnose a 5-year-old.

And then he certainly fit the phonological model of dyslexia.

Oh -- but he also needed OT, so that is outside of the phonological model's explanation. But he did need OT.

And then -- in 4th grade he was diagnosed with dysgraphia only.

So ---- I don't know what will ultimately fit and make sense, or if you will have overlaps, or if she will grow out of (or have success in therapy or your tutoring/help at home) some things, or if they will grow more pronounced with age.

But as far as fitting dyslexia as far as having a phonological weakness -- it sounds like her.

Now -- maybe it is weak partly from not hearing as well? Maybe the filter really solves this?

Here is my opinion on that: getting the filter tomorrow, if it works as you hope, won't make up for the 3 years that she didn't have it and other kids were making the associations of letter sounds in words. It won't make up for it.

So probably as far as reading -- you will still want a reading program designed for children with a phonological weakness, and it will help her to catch up and make up for lost time.

I feel like that happened with my son, he learned to hear the sounds better with his speech therapy (which was similar to LIPS), and then -- it didn't just go away immediately, but he did make progress and I think over time he got the same practice as other kids had been getting all along from just listening to nursery rhymes.

I think my son has had a good outcome, too, he really has. I don't think there are any guarantees of "do this, get this outcome," though. It is different for everybody.

And definitely I understand just bc my son outgrew or learned in speech therapy some things -- other kids have more severe issues and really do strongly fit APD or dyslexia etc.

But anyway -- just to explain why people are saying dyslexia. Maybe it doesn't actually fit her or doesn't fit her beyond "phonological weakness," but the phonological weakness part *does* fit her, and it's the heart of how a lot of dyslexia reading programs are designed, bc they are designed for kids with this weakness, to teach them to read despite naturally weaker phonological awareness.

Edited by Lecka, 10 November 2017 - 11:33 AM.

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#86 OhElizabeth

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Posted 10 November 2017 - 11:34 AM

AAR pre doesn't really offer you any additional tools if there's a disability. It's fun, but it wasn't the level of intervention my ds needed. Your dd sounds sorta in the middle. She's going to need some explicit help, but she does have some good processes going on. Like hearing rhyming at all, that's really good! That's a big deal. 

 

She might be beyond the MFW preschool activity cards. You could just look at the samples and get ideas and google. The stuff you're doing sounds wonderful. What you might want to do on her audiobooks is get her noise canceling earbuds or headphones. I know people who've done that and gotten major, major improvements. It's just the most obvious thing, that you're giving them the input closer to the ears, without them having to discriminate background, etc. Walmart, for back 2 school, had those earbuds for like $5. You might find some on amazon on the cheap. We use them a lot because of our car trips for therapy, but I would use them around the house too. As long as she'll keep the volume down and not blast her ears (I'm always paranoid about that), they could be a powerful too. Later, people have things they'll do like using an earbud only in the weaker ear to try to get that ear to process more, etc. But for now, I'm just saying it would be a way to improve her input. Might help the language issues.

 

I forget who is running the CTOPP for you, but sometimes you can strike lucky with an SLP, a dyslexia school, or a reading tutor. Also, the TAPS (test of auditory processing) is half phonological processing. An SLP will have the TAPS. It's a pretty common one, because it's a bit easier for them to run than the SCAN. I'm saying all that, because I'm just trying to toss out ideas for more ways to make evals happen. 



#87 OhElizabeth

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Posted 10 November 2017 - 11:39 AM

You're not crazy wanting the SLP to work on the phonological processing. Even if it's not dyslexia, there's still clearly enough going on that it would be good to get her qualified. They'll have more complex materials to use with her. For instance, DeGaetano has a STELLAR book Attention Good Listeners. You can use one book to build working memory, rapid naming, discrimination of sounds, and more. Stellar, stellar, stellar tool. Did I mention how helpful it was for my ds? Actually, DeGaetano has a ton of amazing, amazing therapy materials on her site. They cost money, but maybe start watching. You might find things here and there on ebay, amazon used, etc. 



#88 OhElizabeth

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Posted 10 November 2017 - 11:44 AM

Your SLP sounds really on the ball. Is she giving you homework? I would coordinate with her and blow her mind with your willingness to do stuff at home if she will jsut give you tasks. She's probably NOT used to having people do that. Or find stuff from DeGaetano, etc. and email it to her to see what might be a good direction to go. 

 

The stuff your SLP is doing was stuff we did in Earobics, but I think doing it together like that is dramatically better. 


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#89 OhElizabeth

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Posted 10 November 2017 - 11:52 AM

If the caffeine is noticeably improving behavior, focus, whatever, my suggestion would be to go ahead and talk with your ped about meds. And remember, I'm crazy strong on waiting on meds. I'm right there with you on supplements, eat organic, modify, blah blah. But here's the thing. The caffeine activates x number of parts of the brain. The stimulant meds will activate MORE, and it will be smoother, not up and down. You can get a really stable, time-released med, 12 hours, boom. Or maybe you want a 4 hour. The caffeine has a pretty short half life, only like 2 hours. Check.

 

So you'd get more parts of the brain activated and you'd get more effect with upping processing speed. My dd says her auditory processing issues are noticeably better on the meds than they were on caffeine. For her, night and day difference, WAY better. And she's only borderline. So once you're all the way there, maybe with differences in speeds in the ears, etc., that the meds could help, and when you add to that that there's such a significant effect on language acquisition because the auditory processing is so affected, yeah it would be worth pushing over.

 

To me, there's not a moral issue on the meds. Like anybody who says caffeine is fine and prescription meds are horrible is kind of hypocritical. They're all drugs. It's just helpful to know the prescription ones activate more parts of the brain and therefore may get her noticeably more benefit. 

 

That fatigue is really rough. Even if you were to stick with the caffeine, you might want to do repeated dosings to allow for the half-life. You might make some data and see if there's a pattern where her fatigue is connected with the support of the caffeine wearing off.



#90 OhElizabeth

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Posted 10 November 2017 - 11:56 AM

I want to spend some time and look at that filter. I'm particularly interested for personal reasons. I'm trying to figure out what they're making these out of and what they actually filter. It looks like they're custom molds for the ears. There's the physical sense in which you put something there and boom it knocks down the db and the most gross level of sound. That's not a scientific statement, just saying. I wear earplugs myself when I go out, have for a few years now, for a variety of reasons. Mainly it's wifi, but also the noise of loud places leaves me headaches. So as someone who uses that kind of approach myself, I'm trying to figure out what they're claiming these actually do. Cuz I can just go to Target and buy a tub of earplugs and I know what they do, kwim? So I'm trying to figure out how what they're doing is different. 



#91 OhElizabeth

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Posted 10 November 2017 - 11:58 AM

About the behavior when she was tested. We said this at the time I think, but I'll say it again. Behavior is not personal. It just is. It means she was maxed out, unable to cope, and her behavior was showing it. It's not shocking, and not having that behavior at other times just means you have more supports most of the time or don't max her out.

 

The behavior would probably occur to you too if you similarly maxed her out.



#92 Southern Ivy

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Posted 10 November 2017 - 12:08 PM

Now -- not disputing anything!!!!!!

But -- there is no "reading method" for ADHD or APD, right? You are still going to need a reading method?

Correct, and we are looking at Barton or something O-G. We were going to explore Barton, but she failed the screening. That was just a few months ago and we haven't explored LiPS yet. I would like to find a LiPS tutor in the area, but that's been hard. We may need to just buy the program. 

I bailed on AAR (pre-reading) and we ordered Get Ready, Get Set, Go for the Code. Hoping that might help. But, if that does nothing, I'll try to convince dh of LiPS. (It is dang pricey though.) 

As far as a reading method ---- not getting into any associations (by which I mean -- having "dyslexia" mean 20 things associated with dyslexia, but that aren't just "phonological weakness") to go along with needing a certain reading method ----- your daughter is a textbook case of fitting the "phonological hypotheses" for dyslexia.

The author Sally Shaywitz is a professor at Yale, her specialty is reading, and she did some brain scans showing brain activation as weaker in certain regions that measure phonological processing (or something like that).

Then this relates to the "learning to read process."

At this level -- your daughter fits this.

When it gets into -- associated traits, or "well why does she have the weaker brain activation?" -- there I am not saying "dyslexia." I don't know.

But specifically for learning to read -- this seems to completely fit your daughter.

Sally Shaywitz has a book called Overcoming Dyslexia, that is a bit dated now and is not the end-all be-all or anything.....

But the beginning of it describes the phonological hypothesis and that is what people are meaning here.

For my son -- I read the same "brain can't hear, sound through water" books when my older son was 5. For us personally -- it didn't fit him anymore when he was 8! Would have still fit some while he was a younger 7. So we are in that group where -- we are the reason they don't want to diagnose a 5-year-old.

Right - I'm sure you know, just stating for anyone else reading... that portion of the brain does not fully develop until around 8. Thus that testing guideline. Kids can "grow out of" APD. If they still have it at 8, they will have it for life. 

It's a gamble for us to get this testing done, BUT if she does get diagnosed with it, it opens up more therapy options per our insurance. As it stands, they can not assist her in anything "academic", so no ABCs, sounds, etc. APD will open that for us. It would allow us to provide more treatments for her until she's 8, rather than waiting 3 years on a dyslexia diagnosis if that's indeed what she has. 


And then he certainly fit the phonological model of dyslexia.

Oh -- but he also needed OT, so that is outside of the phonological model's explanation. But he did need OT.

And then -- in 4th grade he was diagnosed with dysgraphia only.

So ---- I don't know what will ultimately fit and make sense, or if you will have overlaps, or if she will grow out of (or have success in therapy or your tutoring/help at home) some things, or if they will grow more pronounced with age.

But as far as fitting dyslexia as far as having a phonological weakness -- it sounds like her.

Now -- maybe it is weak partly from not hearing as well? Maybe the filter really solves this?

Here is my opinion on that: getting the filter tomorrow, if it works as you hope, won't make up for the 3 years that she didn't have it and other kids were making the associations of letter sounds in words. It won't make up for it.

So probably as far as reading -- you will still want a reading program designed for children with a phonological weakness, and it will help her to catch up and make up for lost time.

I feel like that happened with my son, he learned to hear the sounds better with his speech therapy (which was similar to LIPS), and then -- it didn't just go away immediately, but he did make progress and I think over time he got the same practice as other kids had been getting all along from just listening to nursery rhymes.

I think my son has had a good outcome, too, he really has. I don't think there are any guarantees of "do this, get this outcome," though. It is different for everybody.

And definitely I understand just bc my son outgrew or learned in speech therapy some things -- other kids have more severe issues and really do strongly fit APD or dyslexia etc.

But anyway -- just to explain why people are saying dyslexia. Maybe it doesn't actually fit her or doesn't fit her beyond "phonological weakness," but the phonological weakness part *does* fit her, and it's the heart of how a lot of dyslexia reading programs are designed, bc they are designed for kids with this weakness, to teach them to read despite naturally weaker phonological awareness.
Oh, I absolutely agree that the phonological aspect fits her. I understand 'why' they are saying 'dyslexia' and it's most definitely not off the table. I'm not dismissing it as a possibility. I was just saying that at this moment more signs are screaming APD and if possible I want to get a dx that can open more therapy doors. I hope that makes sense. 



#93 OhElizabeth

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Posted 10 November 2017 - 12:09 PM

She's not ready for LIPS. The stuff your SLP is doing is more foundational than LIPS.



#94 OhElizabeth

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Posted 10 November 2017 - 12:14 PM

Ask your SLP if she'd like you to work on minimal differences pairs. Send her a link to this book and see if she thinks your dd would be ready for it. http://forums.welltr...good-listeners/

 

Like I said, that book was MORE powerful for my ds than LIPS. LIPS was good, useful, sure, but those minimal difference pairs were huge. And there are multiple ways you can use the book to get more out of it. And it's cheap. 


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#95 OhElizabeth

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Posted 10 November 2017 - 12:17 PM

So let me explain and bore you. A minimal difference pair is where only one little bit (sound unit) differs. So ship vs. shop. Bit vs. bat, etc. 

 

So the worksheets go through all the positions and sounds in a really systematic way, using visual supports. It's a precursor skill to LIPS even and not done well in LIPS. If you say minimal differences to your SLP, she will kiss you. This is the kind of stuff that is doubtless on her list to work on. 

 

See if you can find some samples. We're talking under $30, and it's brilliant stuff, crazy easy to implement. You'll do the same worksheet day after done. It's not a one and done. This is therapy. You're going to do the same page every day for a week or two, and each day it will get a bit easier, a bit faster. The sequencing? Yup, you can hit that too. Once she can actually hear the differences and touch the correct picture for words or give the correct words for pictures, then you're going to do little sequences of 1-3, even or 4 5. Think about the crazy working memory you're building up there! All from one little workbook. 

 


Edited by OhElizabeth, 10 November 2017 - 12:18 PM.

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#96 Southern Ivy

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Posted 10 November 2017 - 12:39 PM

AAR pre doesn't really offer you any additional tools if there's a disability. It's fun, but it wasn't the level of intervention my ds needed. Your dd sounds sorta in the middle. She's going to need some explicit help, but she does have some good processes going on. Like hearing rhyming at all, that's really good! That's a big deal. 

 

She might be beyond the MFW preschool activity cards. You could just look at the samples and get ideas and google. The stuff you're doing sounds wonderful. What you might want to do on her audiobooks is get her noise canceling earbuds or headphones. I know people who've done that and gotten major, major improvements. It's just the most obvious thing, that you're giving them the input closer to the ears, without them having to discriminate background, etc. Walmart, for back 2 school, had those earbuds for like $5. You might find some on amazon on the cheap. We use them a lot because of our car trips for therapy, but I would use them around the house too. As long as she'll keep the volume down and not blast her ears (I'm always paranoid about that), they could be a powerful too. Later, people have things they'll do like using an earbud only in the weaker ear to try to get that ear to process more, etc. But for now, I'm just saying it would be a way to improve her input. Might help the language issues.

 

Yeah, I stopped doing AAR. I got Get Ready, Set, Go for the Code. It was $20 for all 3, so I figured why not. I remember it looking like it might be a bit better than AAR, so we'll see. 

I do think she is beyond the activity cards. But, I may see if I can find other activity cards. 

Funny thing - she doesn't like listening to audiobooks with headphones. She is a lot more likely to listen to it if we are listening together. (BUT, she just pulled the headphones out for the Roku. There's a lot more talking in Odd Squad, so she's wanting to hear it better.)
 

Your SLP sounds really on the ball. Is she giving you homework? I would coordinate with her and blow her mind with your willingness to do stuff at home if she will jsut give you tasks. She's probably NOT used to having people do that. Or find stuff from DeGaetano, etc. and email it to her to see what might be a good direction to go. 

 

The stuff your SLP is doing was stuff we did in Earobics, but I think doing it together like that is dramatically better. 

 

She is really good. I do need to see if she wants us working on anything. or how we can enforce it more at home. 
She really is making great progress, though. I've been very pleased. I figure if I have to drive an hour for therapy, I may as well go to the best clinic. 
 

To me, there's not a moral issue on the meds. Like anybody who says caffeine is fine and prescription meds are horrible is kind of hypocritical. They're all drugs. It's just helpful to know the prescription ones activate more parts of the brain and therefore may get her noticeably more benefit. 

 

That fatigue is really rough. Even if you were to stick with the caffeine, you might want to do repeated dosings to allow for the half-life. You might make some data and see if there's a pattern where her fatigue is connected with the support of the caffeine wearing off.

I'm cracking up because I am totally the "I'd rather she have a little caffeine than a controlled substance." lol And I do see the hypocrisy of it. ;) 

DH is pretty firmly against meds until we come back from Colorado. However, I may talk to him about the benefits of the meds on APD and we'll see what he says. 

 

I want to spend some time and look at that filter. I'm particularly interested for personal reasons. I'm trying to figure out what they're making these out of and what they actually filter. It looks like they're custom molds for the ears. There's the physical sense in which you put something there and boom it knocks down the db and the most gross level of sound. That's not a scientific statement, just saying. I wear earplugs myself when I go out, have for a few years now, for a variety of reasons. Mainly it's wifi, but also the noise of loud places leaves me headaches. So as someone who uses that kind of approach myself, I'm trying to figure out what they're claiming these actually do. Cuz I can just go to Target and buy a tub of earplugs and I know what they do, kwim? So I'm trying to figure out how what they're doing is different. 

The only pics I've found have been in the FB group. I'll message you some pics. :) 
I'm honestly not sure HOW they work. lol All I know is they do. 

 

About the behavior when she was tested. We said this at the time I think, but I'll say it again. Behavior is not personal. It just is. It means she was maxed out, unable to cope, and her behavior was showing it. It's not shocking, and not having that behavior at other times just means you have more supports most of the time or don't max her out.

 

The behavior would probably occur to you too if you similarly maxed her out.

I agree. I know it's not personal. I just know that wasn't her either (though the psych kept trying to insinuate that I wasn't being honest..."This behavior is definitely being reinforced from somewhere and I don't see a school enforcing it." 
Sorry, lady, I can guarantee you - THIS is not MY daughter.
I tried telling her that she had anxiety and she would act out, but it was almost as if she was determined to diagnose the ADHD. 
Not sure if you remember - and I didn't until I reread my first post - the psych initially met me and Riv and she said "I really think this is just a case of above average parents with an average child." So, initial meeting wasn't "crazy Riv", it was normal playing with a toy Riv. It wasn't until the testing happened and she was asked tons of questions and given explanations that she was "off". 


Edited by Southern Ivy, 10 November 2017 - 12:45 PM.


#97 OhElizabeth

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Posted 10 November 2017 - 01:06 PM

Is she getting worn out in the half hour sessions? We drive 2+ hours each way, so we were motivated to increase the length of the sessions. If she fatigues at 30 minutes,  you might do the 30 minutes, break for lunch or the park, do another 30 minutes.



#98 OhElizabeth

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Posted 10 November 2017 - 01:07 PM

On the caffeine, I mean it a step further. Like people will say Oh I'd never put my kid on ritalin, but they sit there guzzling tea and coffee. THAT is hypocritical. 



#99 OhElizabeth

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Posted 10 November 2017 - 01:08 PM

Your ds seems to do well in the presence of information. That's why I was saying I would make data on when her fatigue is occurring. One of the advantages of meds is that it's extended release, unlike caffeine. So that would be helpful information to have, if you can quantify how long it's lasting, when the effect wears off, how much benefit it would be to have something extended release or 8 hour, etc. That's stuff you can actually quantify. 

 

Your ped will be able to explain what parts of the brain are activated. I'm just saying my dd says it's dramatic.



#100 OhElizabeth

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Posted 10 November 2017 - 01:18 PM

Ok, here's the thing. That psych didn't have the tests and skill set to work with the APD question, and really they're sorta hack anyway. A lot of the time they just shoot of their mouths saying this stuff and take no accountability for whether they're right, whether they gave you actionable information, etc. So if you wanna have a dish on psychs, slam the psychs, sure there's room for that.

 

However, being on the other side of it too, having been through the IEP process several times and now and having these (very nice, very conscientious) school people in my home, evaling my kid, observing, etc., I think I can say there's problem *something* to what she was saying. She just didn't put it well or say it in a way to help you know what she meant or make it actionable. 

 

If she had said that same thing to a school official, they would go back and observe in the classroom and figure out what was reinforcing the behavior. They would find where the gap was, because the KID is not assumed to run his OWN world and his own behavior. He's operating in the system they provide of supports and structures and reinforcers and motivators. And even in a typical, mainstream classroom, all that is there.

 

I used to take a lot of offense. Like people would be observing and they're like oh, you don't have enough CONSEQUENCES. I'm like dude, you really oughta get off my back, because I'm trying not to get hurt and I'm doing the best I can. But now, with things improved, with a few years under my belt, I go oh, I know what they meant! But my self from 3 years ago wasn't in a position to handle one more step, one more task, one more thing. So they were right, but they were saying it in jargonese and I wasn't ready.

 

So the TRUTH is that you probably ARE doing some things that you're going to change later. But REALITY is you're not ready to change those things yet because you're mortal, human, and overwhelmed. You're dealing with the same boatload of behaviors 24/7 that that psych melted under in just 2 hours. You do it all day long AND you teach her AND you stay fresh and jolly AND AND AND. And nobody pays you.

 

Lecka made a really striking point, btw, that merely improving the dichotic listening is not going to eradicate all the deficits in input for how many years. You're working on retained reflexes now, right? And has anyone done the more basic, obvious level stuff like listening therapies? Metronome work? Some of that stuff is super cheap for a therapist to make happen. Like you just use a metronome app or they hand you an mp3 with the special therapy music. 

 

I don't know, I'm pretty pragmatic. However I can see where this AK stuff is controversial, because it's taking a path to avoid rather than taking a therapy path to try to make more pathways in the brain.