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Southern Ivy

Update, post 66 -----We got a diagnosis! *aka: Follow your gut!*

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We just got back from Colorado and kiddo DOES have Auditory Processing Disorder. 
Poor baby. She is correctly hearing MAYBE 50% of what we say. It's no wonder everything has been such a struggle. 

Anyway, this clinic has a filter that they produce themselves. It looks likes a musicians ear piece, but has a small white piece in it that is the actual filter. 
(description stolen from someone else)
1. It filters out high-frequency tones from the one ear that it is in. This helps with background noise.

2. But the big magic is that it slows down the input into one ear, balancing the input signal in time between both ears. One of the major causes for CAPD can be that one ear is hearing before the other, so by the time the signal from both ears meets in the brain, they are off in time by a microsecond. The ear filter corrects for this.

**When she did a portion of the testing without the filter, she could only identify 56/100 words correctly. With the filter in her right ear, she had the same score - 56/100. However, when they put the filter in her left ear, she was able to correctly identify 92/100!  

So, Riv was a candidate for the filter and we should receive it in 3 weeks. She will wear the filter in her left ear. 

The audiologist said that after she gets the ear filter, we should see progress in quite a few areas. When talking to her about our struggle with the alphabet and sounds, she said, "Of course she can't remember the sounds or names. Up until now, she's probably only heard the correct sound or name every 3rd or 4th time. That makes it hard." 

I'm not expecting immediate and perfect improvement, but this is definitely a huge piece of the puzzle. 
 

Edited by Southern Ivy
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That is AMAZING.  :svengo:  :w00t:  :thumbup:  :hurray:  :hurray:  :hurray:

 

So then is it ok to...

 

:party:  :party:

 

Like it's kind of sucky awful, but WOW that's an amazing change with just that one intervention!!! And then if you couple it with therapies to take advantage of her new readiness, wowee, that could be AMAZING.

 

So excited for you. How did your dh feel about it?

 

And how would ADHD meds affect the processing speed issues? Or was that ON the meds that she had that differential?

Edited by PeterPan

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Like it's kind of sucky awful, but WOW that's an amazing change with just that one intervention!!! And then if you couple it with therapies to take advantage of her new readiness, wowee, that could be AMAZING.

 

So excited for you. How did your dh feel about it?

 

And how would ADHD meds affect the processing speed issues? Or was that ON the meds that she had that differential?

Before going, I was in such a quandary. Like - Do I hope she has this so we can have a dx? Do I hope she doesn't so she doesn't have to deal with it? I didn't want her to have it, but I definitely didn't want to leave there without a dx. 

DH was very happy as well. It takes him awhile to really think things through and process, but he's happy we've gone and that we know at least a big part of what's wrong. 

There's still the potential for dyslexia, as we've talked about in other threads. But, we've at least taken two things off the table now. 

 

Yes, the differential was WITH the meds. I'm honestly curious how much of her issues are pure sensory overload from her "super hearing". Part of the test was listening to sentences with classroom background noises (rustling papers, pencils writing, the air conditioner blowing, etc) and per the doctor, it was quieter than her talking to us. She bombed that portion. She hears EVERYTHING too well. After the test, she was crazy hyper and DH had to take her across the street to the park while I finished up our meeting. The doctor said "That is incredibly common. Pure auditory overload right there. Almost all of our littles do that."

So, I'm wondering how she will be after wearing the filter - will we actually need the meds? Are we medicating a misdiagnosis or does she still have ADHD? I'll be talking to her doctor once we get the filter and we might experiment a bit to see if she actually needs the meds or not. (APD is very frequently misdiagnosed as ADHD, usually inattentive, though. This also makes me question the SPD diagnosis.) 

 

We will probably not pursue any auditory therapies at this time. We'll continue with speech for her MRELD and her OT, but the audiology clinic has been tracking the data and the growth of almost 200 kids doing therapies vs no therapies and the growth is almost the same.

She said that it's obviously up to us if we still want to pursue additional therapy, but she doesn't believe it's necessary. if we were going to do an auditory therapy like the Buffalo Model, FastForword, etc that we should take the filter out (basically so that if therapy doesn't help, the therapist can't blame the filter...which has happened).

(She used to do a lot of different therapies like The Buffalo Model prior to working for Able Kids and she says that the filter has shown more progress than she ever saw with the others. And, I know the filter is their "thing", but the girl who was there before us was saying she didn't meet the requirements for a filter, so I know it's not a "let's give everyone a filter" type thing.)

 

I'll have the actual report in 4-6 weeks. I took pics of what she showed us, but I honestly can't remember what all the numbers mean now! lol 

 

Edited by Southern Ivy
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Sorry for the challenge but happy for you for the diagnosis and intervention that sounds so helpful!

Thank you. :D

Have I told you before that I grew up in NWA? (Assuming you mean, the Fay/Spring/Rogers/Bent area...) 

Edited by Southern Ivy

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1. It filters out high-frequency tones from the one ear that it is in. This helps with background noise.

 

That is very interesting because that's exactly the situation that my DD is in with her physical hearing loss. She has one ear with the cochlear implant where she can hear the full frequency spectrum. Then on her other ear she has the hearing aid, which amplifies the low frequency tones but isn't powerful enough to get her the high frequencies.

 

I have no idea if the ear we chose to implant was the better one to hear the full spectrum with but it's too late now.

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That is very interesting because that's exactly the situation that my DD is in with her physical hearing loss. She has one ear with the cochlear implant where she can hear the full frequency spectrum. Then on her other ear she has the hearing aid, which amplifies the low frequency tones but isn't powerful enough to get her the high frequencies.

 

I have no idea if the ear we chose to implant was the better one to hear the full spectrum with but it's too late now.

:grouphug: 

 

You'd think the doctors would have tested for that!

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:grouphug: 

 

You'd think the doctors would have tested for that!

 

Unfortunately, with her particular hearing loss there would be no way to test for it. She couldn't hear the high frequencies with either ear and the only way to restore the access to the full frequency spectrum was to do the surgery. She didn't qualify to get 2 implants so the surgeon & audiologist picked the ear that had a slightly worse mid-frequency loss. It makes sense to do it that way but who knows if from a hearing in background noise the other ear would've been better. Might not have made any difference.

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Did you find out more about what APD kids are good candidates for the filter or how they determine that?

 

I am curious how the ADHD stuff goes--my son seems to have both APD and ADHD, and he's doing super well on meds. The APD is still there with the meds, but he is so much more able to do what he needs to do otherwise. He gets some serious sound overload though, and it's hard for him to deal with some days.

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You'll think of this yourself, but do your med breaks on weekends, like on a Saturday, not when you're trying to do school work or anything serious. Also, the first day off can be hairy because their brain was used to the support in processing. 

 

All that matters is that she functions and things are looking up.

 

As far as controversial approaches, just own it. Sometimes there are multiple paths and we just have to choose one. It seems like you've chosen a very reasonable one. She had significant, significant effect, and it sounds like this tech for her will be life-altering. 

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It might be best to stop the auditory therapy, once she gets the filter?

As the therapy might no longer be suitable?

Particularly, if it is able to balance the timing of hearing with both ears.

When they are out of balance, it makes it difficult to detect the 'onset of phonemes in speech'.  

Which is what a lot of auditory therapy helps to cope with.  But wont help, if she no longer has this problem.  It could even hold her back?

 

It might be better to expose her to different 'hearing environments'', and have her explore the difference that it makes to her hearing?

As what she hears will be different.

It was interesting, that the filter made an immediate difference.  Which suggests that the adjustment was quite easy for her.

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Did you find out more about what APD kids are good candidates for the filter or how they determine that?

 

I am curious how the ADHD stuff goes--my son seems to have both APD and ADHD, and he's doing super well on meds. The APD is still there with the meds, but he is so much more able to do what he needs to do otherwise. He gets some serious sound overload though, and it's hard for him to deal with some days.

 

I don't know specifically which versions of APD are better for the filter. I do know that they test two parts of the brain - in a sound proof room, my daughter was able to correctly relay sentences with 90-100% accuracy. When she had a competing sentence in either ear, she was still able to relay with 90-100% accuracy. That accuracy dropped to 24% in the right ear and 16% in the left ear when background sounds were added. 

So, I would say that for sure a filter would work for Auditory Hypersensitivity. 

When I get the full report, I'll share it with you. :) 

 

I would think that for your son, it would help. In the group I'm in, the kids who seem to have a lot of sensory overload are the ones that the filter does best with since it regulates the input. 

 

This is the Facebook group I'm in. They're far more experienced than I am and could probably answer your questions more. 

 

It might be best to stop the auditory therapy, once she gets the filter?

As the therapy might no longer be suitable?

Particularly, if it is able to balance the timing of hearing with both ears.

When they are out of balance, it makes it difficult to detect the 'onset of phonemes in speech'.  

Which is what a lot of auditory therapy helps to cope with.  But wont help, if she no longer has this problem.  It could even hold her back?

 

It might be better to expose her to different 'hearing environments'', and have her explore the difference that it makes to her hearing?

As what she hears will be different.

It was interesting, that the filter made an immediate difference.  Which suggests that the adjustment was quite easy for her.

We currently are not doing auditory therapy. We're only in speech (though they do work on multi-step directions), but due to the APD, she has some expressive language delays. Her grammar is atrocious. So, they're working on a lot of grammar skills. 

 

I discussed the possibility of the Buffalo Model or other therapies with the audiologist. She (after years of doing tons of different therapies) does not think that they help as much as the filter (and from all I'm reading online, the parents seem to agree). So, without really saying so, she kind of discourages the additional therapies. IF we do it, it would only be without the filter in place. But, we're going to see how she does with the filter for awhile. 

 

We'll definitely see how the filter affects her at church. It can be sensory overload for her and she has to wear ear phones to help with the noise. The dr said that even with the filter, she may want the headphones for a time (like a blanket for comfort), but eventually, she should be able to function without the headphones. 

With as young as she is, she may not be able to express the differences and I'm hearing that for some parents, it can be very subtle changes...until you don't have the filter. Then, you notice. So, we'll see. 

 

A lot of parents have seen that the ADHD symptoms go away completely as well. I'm hopeful! 

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You'll think of this yourself, but do your med breaks on weekends, like on a Saturday, not when you're trying to do school work or anything serious. Also, the first day off can be hairy because their brain was used to the support in processing. 

 

All that matters is that she functions and things are looking up.

 

As far as controversial approaches, just own it. Sometimes there are multiple paths and we just have to choose one. It seems like you've chosen a very reasonable one. She had significant, significant effect, and it sounds like this tech for her will be life-altering. 

A lot of people have said it is life changing. So, I'm hopeful it will be for her as well. Her CANS (central auditory nervous system) is still developing and will continue to do so until around 16. We could very well grow out of this by 16, but if not, at least we have a device to assist. 

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On the surface, it seems really reasonable to think that improving her ability to get the input will allow her to use regular speech therapy methods. If you do the regular methods and they're working, you're solid and good to go. If you do them and they're not working, then you could back up and work more on processing. 

 

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I don't know specifically which versions of APD are better for the filter. I do know that they test two parts of the brain - in a sound proof room, my daughter was able to correctly relay sentences with 90-100% accuracy. When she had a competing sentence in either ear, she was still able to relay with 90-100% accuracy. That accuracy dropped to 24% in the right ear and 16% in the left ear when background sounds were added. 

So, I would say that for sure a filter would work for Auditory Hypersensitivity. 

When I get the full report, I'll share it with you. :) 

 

I would think that for your son, it would help. In the group I'm in, the kids who seem to have a lot of sensory overload are the ones that the filter does best with since it regulates the input. 

 

This is the Facebook group I'm in. They're far more experienced than I am and could probably answer your questions more. 

 

My son's speech went way downhill during his testing, so they couldn't complete it. As a result, we don't actually have a subtype, but knowing what they do to test the filter's efficacy is helpful. His ability to hear in noise got a lot better after vision therapy (seriously, lol!). But his time compressed speech scores are single digit percentiles, and he has patterns of ear differences that make me think something like this would work. I think for a long time, he was so overwhelmed, he blocked out a lot of stuff. His auditory overwhelm is actually a fairly new symptom due to a little bit better processing, ironically. 

 

I appreciate your willingness to share, and I am so happy for your daughter! 

 

A filter would be so much less fuss and expense (other than the trip, etc.) than hearing aids, which is a possible intervention for my son as well.

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It’s not just the same, but my daughter got tubes in her ears and we were told similar things about her just not hearing properly, and she made MAJOR progress in 3 weeks. I saw someone after 3 weeks and it was a huge, obvious difference even that quickly. She was younger (she was turning 2) but she had concerns for her language development and then it turned around that quickly.

 

This is exciting :) I’m so glad it has worked out for you guys!

Edited by Lecka
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That's what I was pondering, what the difference in effect was between the filter and HA...

Digital hearing aids use signal processing to clean up the sounds and filter out background noise. I don’t have the technical knowledge to understand how (I hated my “Speech Science†course as it was basically physics). The filter I don’t think would be able to achieve the same quality as the mini-computer found in a digital aid but the flip side would be less expense and a less conspicuous look that older children and teens would presumably prefer.

 

 

Sent from my iPhone using Tapatalk

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Digital hearing aids use signal processing to clean up the sounds and filter out background noise. I don’t have the technical knowledge to understand how (I hated my “Speech Science†course as it was basically physics). The filter I don’t think would be able to achieve the same quality as the mini-computer found in a digital aid but the flip side would be less expense and a less conspicuous look that older children and teens would presumably prefer.

 

 

Sent from my iPhone using Tapatalk

 

There is also the possibility of the hearing aids actually acting as remediation for APD to some extent--a friend's daughter has been using a school-provided super high end FM system, and it's made a noticeable difference in her auditory behavior and what she catches even when she's not using it after school and on weekends. 

 

But, I would think that for the right set of conditions, the filter could be incredibly helpful. I assume that is why the foundation is so careful about the claims they make and their testing process--they want to be sure it's not being distorted as a cure-all. 

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What a great update!! Way to go, mom, for pursuing all of the testing and figuring it out!! I hope that her ability to pay attention, hear, and learn all improve dramatically now. Now you know what kinds of intervention and support she needs, which is awesome!!

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That's very interesting and yay for getting answers hopefully they sent you with a full report. I would just pretend she is getting a second chance at learning language as she should have as a baby if this hadn't happened. Talk with her , encourage her to talk and hear her own voice. Look up all the techniques they give kids with cochlear implants the brain is plastic and this is a good chance to reboot it.

 

Crimson is the cochlear implant in the right or left ear and is she right or left handed? Any chance someday she might get both ears.

Edited by exercise_guru
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That's very interesting and yay for getting answers hopefully they sent you with a full report. I would just pretend she is getting a second chance at learning language as she should have as a baby if this hadn't happened. Talk with her , encourage her to talk and hear her own voice. Look up all the techniques they give kids with cochlear implants the brain is plastic and this is a good chance to reboot it.

 

Crimson is the cochlear implant in the right or left ear and is she right or left handed? Any chance someday she might get both ears.

 

Her implant is in the left ear and she's right handed.

 

If both ears had had equal loss, the preference would be for implanting the right ear as that connects to the left side of the brain. But she was a very borderline candidate for an implant as it was (Kaiser HMO had previously denied the surgery) so the surgeon went ahead with the ear that had greater loss. Her genetic mutation means that the hearing in the right ear will continue to deteriorate and at some point she will need a second implant.

 

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Digital hearing aids use signal processing to clean up the sounds and filter out background noise. I don’t have the technical knowledge to understand how (I hated my “Speech Science†course as it was basically physics). The filter I don’t think would be able to achieve the same quality as the mini-computer found in a digital aid but the flip side would be less expense and a less conspicuous look that older children and teens would presumably prefer.

 

 

Sent from my iPhone using Tapatalk

A hearing aid also amplifies the sound, correct?

That in itself is a big difference. The filters do not amplify sound. They merely filter the background noises and are made according to the deficits of the wearer. So, another filter would not work with Riv because it's not made to her specifications. 

 

There is also the possibility of the hearing aids actually acting as remediation for APD to some extent--a friend's daughter has been using a school-provided super high end FM system, and it's made a noticeable difference in her auditory behavior and what she catches even when she's not using it after school and on weekends. 

 

But, I would think that for the right set of conditions, the filter could be incredibly helpful. I assume that is why the foundation is so careful about the claims they make and their testing process--they want to be sure it's not being distorted as a cure-all. 

Yes - and even the Moms in the group are quick to say it's not a cure-all. 

 

Able Kids also recommend FM systems. I think it all depends on the patient. The doctor went over a list of accommodations for Riv, but since we homeschool, I admit I didn't pay close attention. lol 

 

 

That's very interesting and yay for getting answers hopefully they sent you with a full report. I would just pretend she is getting a second chance at learning language as she should have as a baby if this hadn't happened. Talk with her , encourage her to talk and hear her own voice. Look up all the techniques they give kids with cochlear implants the brain is plastic and this is a good chance to reboot it.

That's a wonderful way to look at it. You are so right.

 

We will be emailed a full report in 4-6 weeks. 

Edited by Southern Ivy
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Both of you could look into Fast Forword. If a coach would let you do the demo with your kiddo that would be best. I was able to do that. It trains the ear to hear the lagging and leading sounds as well as important temporal mechanics of speech. 

 

To just try and see if it is an issue you could go to BrainHQ. They are the same makers and the programs in the auditory training target the exact same areas. It gives you a free month. The sound sweep is really challenging for kids with Auditory issues. It took my son 2 months to master the one in fast forword. I prefer their interface it is much more kid friendly and the tracking data is awesome but many many adults with hearing aids use BrainHQ , LACE , and there is another one called Angels something. 

 

If you have a speach therapist there is a great dichotic app for 50 dollars on the ipad called Skyscraper from accoustic pioneer that my son is doing now. He also will do the earplane starting tomorrow. 

 

Each morning I have him do 20-30 minutes of Auditory therapy. He likes the computer therapy games because he can self motivate and it helps key his hearing. I have read volumes of research and data and programs on APD. I have consulted a lot of experts. I wish my son had gotten diagnosed at an early age as the filter would have really really benefited him. 

 

His tests are continuing to improve with all the therapy we have but is in the low normal. He sure would have benefited from the filter when he was 5 and saved himself a lot of discouragement from getting labelled the bad kid for not being able to "hear" the teacher. 

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The various auditory therapy programs, are designed to help cope with the difficulties that hopefully the Filter will correct.

So that they could possibly have a negative effect, as they wont be appropriate for her 'new hearing'?

 

Rather, the focus should be on having her explore the change in her hearing.

How words sound, when the higher frequencies are reduced in volume.

But the greater change, could be if both ears are recieving signals at the same time?

Which directly relates to percieving the rhythm in speech.

 

Perhaps you could imagine, trying to make sense of a rhythm as it is tapped out.

If each tap is heard at a different time, in each ear?

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The various auditory therapy programs, are designed to help cope with the difficulties that hopefully the Filter will correct.

So that they could possibly have a negative effect, as they wont be appropriate for her 'new hearing'?

 

Rather, the focus should be on having her explore the change in her hearing.

How words sound, when the higher frequencies are reduced in volume.

But the greater change, could be if both ears are recieving signals at the same time?

Which directly relates to percieving the rhythm in speech.

 

Perhaps you could imagine, trying to make sense of a rhythm as it is tapped out.

If each tap is heard at a different time, in each ear?

Exactly. 

I wouldn't say therapy would be "negative", but it doesn't serve a purpose at this point. 

 

The audiologist likens it to glasses - you need glasses to see. If you squint hard enough, you could see a bit better, but why not utilize the tool you have that corrects the issue. Same with the filter - we could go to therapies and spend money on different things, but it only masks the issue at hand - it's like squinting to see better. 

 

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Article about Able Kids - the mother of "Isabelle" is one of the writers and a person I've been speaking with frequently



Anyhoo - we're happy. We're going to use JUST the ear filter for the time being as I truly believe we will see more progress than with additional therapies, though I know some therapies work wonders with some kids. I just don't feel like it's the right direction for my daughter at this time. 

I'll keep you all posted on any changes. 

Edited by Southern Ivy
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So they think she is going to need this filter for the rest of her life ? I assumed that they were using the filter to "train her brain" to process the sound correctly. Most auditory processing can be corrected with therapy even hearing in sound. I would be suprised if she needed this her entire life. I likened it more to vision therapy where you train the brain to process vision better than putting on a pair of glasses.

 

 

Well time will tell. do all you can to stimulate her auditory systems. Get that system going I am sure she will make huge growth.

 

 

But regarding auditory therapy and programs. The lace and the angel program were designed to help train the brain for chldren and adults with hearing aids. The FastForword program was creates by the man who coinvented the cochlear implant ans they have uses that program foe kiddos with the implant. They have even used it to train the auditory system of stroke victims with auditory processing loss.

 

All auditory focused stimulation is good. It's even good for kids with no problems because we live in a visual world and most of academic work requires a strong auditory system.

Edited by exercise_guru

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Just as an observation, it seems like an approach of training them to distinguish/filter would really be affected by the severity, etc. My dd is borderline, not diagnosed, and she always finds therapy like that exceptionally fatiguing. Like I could totally see situations where no matter what you do, they're still going to have limits and not get all the way to "normal" or without disabling effects and fatigue, and I could see situations where the parents are like this is stupid, just move on. 

 

I also think Ivy's child, in particular, has just a really, really, really serious effect. There are people with APD who are clinical, who are diagnosed, who are still learning to read and able to function. Lots of them do, and we've had plenty on the boards who do. This child wasn't even getting out the gate. Seems to me that means that therapy to try to improve it would be an astonishingly uphill battle with limits on how far you'd get. Not saying what she should do, just saying there could be that logic there.

 

And that's what I meant by controversial. There are going to be opinions on this, and the parent has to make the call and run with it and own their decision. It's good to have thought through the logic, and it's wise to trust no one. Always verify and make sure the approach seems reasonable, make sure your data is showing progression and that it's actually working. But at some point, that's what parents do. They make really controversial, hard decisions and do the best they can.

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There is also a difference between what is done within a therapy session and the other hours in a day. When my DD is at therapy, her SLP uses a special screen to prevent lip reading and force my child to use only the auditory information. But in real world situations, we want her to use multi-sensory input to help her understand what is being said to her

 

 

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So they think she is going to need this filter for the rest of her life ? I assumed that they were using the filter to "train her brain" to process the sound correctly. Most auditory processing can be corrected with therapy even hearing in sound. I would be suprised if she needed this her entire life. I likened it more to vision therapy where you train the brain to process vision better than putting on a pair of glasses.

It depends on the person's APD. For some, therapies work and they dont' need the filter. For some, the type of APD they have does not show improvement with the filter. Some grow out of the APD as their CANS matures. Some don't. So, the use of the filter is dependent upon their CANS. 

 

The current clinic director was an clinical and research audiologist for years. She's been trained in and utilized numerous therapies. Based on her experience, she doesn't believe that APD can be cured (as I was told it could be) through therapies. Their approach to APD is vastly different than the majority of audiologists today, though, so they do get a lot of push back. 

Their testing is very different from the traditional APD testing as well. Their testing protocol is designed to test and retest different areas of the auditory system at different times to avoid a situation in which all of the testing in one area would be near the end, when the person being tested is tired. Also, the founder said they also designed the test so that results couldn't be "faked" (resulting in a CAPD diagnosis when there is no CAPD.) The testing protocol is the result of 40 years of experience in the career of the founder, Joan Burleigh. 

All I know is that I have talked to many moms and adults who have seen drastic changes in their kids, so I trust the process and I trust the audiologist.

 

For me, I have seen my child in the middle of panic attacks because she is so overwhelmed by all the auditory input. I have seen her break down sobbing because she can't understand what her friends and people at church are saying. She's repeated over and over that she's stupid and will never learn to read because she doesn't understand. All this before she's 6. 

So, if a filter that costs less than a month of speech therapy can help, I'm all in. 

 

Will we try auditory therapy? Maybe. Maybe not. We'll go back in a year and follow up to see what kind of growth she has. Based on the reports that I've read (from mothers who were awesome enough to forward their reports to me), I have high hopes. We'll make more decisions then. 

Edited by Southern Ivy
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There is also a difference between what is done within a therapy session and the other hours in a day. When my DD is at therapy, her SLP uses a special screen to prevent lip reading and force my child to use only the auditory information. But in real world situations, we want her to use multi-sensory input to help her understand what is being said to her

 

Yes, they do that with mine. She's good a lip reader. 

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Just as an observation, it seems like an approach of training them to distinguish/filter would really be affected by the severity, etc. My dd is borderline, not diagnosed, and she always finds therapy like that exceptionally fatiguing. Like I could totally see situations where no matter what you do, they're still going to have limits and not get all the way to "normal" or without disabling effects and fatigue, and I could see situations where the parents are like this is stupid, just move on. 

 

I also think Ivy's child, in particular, has just a really, really, really serious effect. There are people with APD who are clinical, who are diagnosed, who are still learning to read and able to function. Lots of them do, and we've had plenty on the boards who do. This child wasn't even getting out the gate. Seems to me that means that therapy to try to improve it would be an astonishingly uphill battle with limits on how far you'd get. Not saying what she should do, just saying there could be that logic there.

 

And that's what I meant by controversial. There are going to be opinions on this, and the parent has to make the call and run with it and own their decision. It's good to have thought through the logic, and it's wise to trust no one. Always verify and make sure the approach seems reasonable, make sure your data is showing progression and that it's actually working. But at some point, that's what parents do. They make really controversial, hard decisions and do the best they can.

Yes - this was our who thought process. 

 

And you'd better believe it's controversial, which is baffling to me. The CAPD groups I'm in don't like that AK tests earlier than 7 and will delete any comment about them.

When we took Dd to speech yesterday, they asked about the visit. When we discussed the filter, there was immediate bristling. It was almost tangible, but she's at least willing to call and discuss the filter with them. I feel a conflict is going to arise at this speech clinic though. :/ I'm buckling down for it. 

 

It's not everyone's cup of tea, but like you said - this kid isn't even out the gate. They were doing some auditory skills training in speech and utilizing some of the Buffalo Model, but minimal improvement. So..worth a shot. 

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I don't know much about APD, but we did wonder for awhile if DS12 had it, so we had some initial screening and asked some questions. One of the things we did was see an ENT and his team at our children's hospital. That doctor actually told me that many physicians believe that APD is not a real thing and does not really exist. He seemed to be in that camp himself.

 

So I'm not surprised that there is controversy about how to treat it, as well. Ivy, I'm glad you've found something to try, and I hope it makes a world of difference!!

Edited by Storygirl
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What I think is such a catch-22, is that if you see improvement between ages 5-7, then people who think it's not diagnosable before age 7 will say it was just grown out of.  Not that the filter helped. 

 

Because if you believe it isn't diagnosable before age 7 but can be grown out of before age 7, then...... that's the obvious answer. 

 

But that is so unfair if it does work at age 5 and prevents problems at age 7 in kids who otherwise would have had problems at age 7.

 

I think the real issue is that there are so many really kooky things out there, that it makes it hard to separate out the ones that are legitimate from the ones that aren't.  Especially for people who specialize into areas that seem to attract a lot more of the kooky things just because they are more difficult and so there are more desperate parents looking for something to help. 

 

Then there is another issue, Temple Grandin talks about this I think, where if an intervention helps 10% of kids, why is that a failed intervention, and not an intervention that legitimately helped 10% of kids.  That's actually pretty good news for those 10% of kids, even if it is not helpful for the other 90%. 

 

 

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I don't know much about APD, but we did wonder for awhile if DS12 had it, so we had some initial screening and asked some questions. One of the things we did was see an ENT and his team at our children's hospital. That doctor actually told me that many physicians believe that APD is not a real thing and does not really exist. He seemed to be in that camp himself.

 

So I'm not surprised that there is controversy about how to treat it, as well. Ivy, I'm glad you've found something to try, and I hope it makes a world of difference!!

"It doesn't exist."

"It's just another name for dyslexia." 

"They can hear just fine. There's nothing wrong." 

 

Yup. Heard it. I've also heard "She's not old enough to have it yet." Ummm....

 

Orton (Orton-Gillingham) started his research of dyslexia in the 1920s. Comparatively, research into APD didn't start until 1954 and it's not as prevalent. So, yeah, it's considered new and misunderstood in the medical world.  It's often mistaken for a variety of other things, so people are misdiagnosed. 

 

Celiac disease was pooh-poohed for years by doctors and they were proven wrong. Heck, my own doctor doesn't believe that ADHD exists - but she still medicates my child. Who knows.

I'm at the point that I don't hold much stock in the negative opinions of a professional who hasn't devoted their work to studying that field or condition. 

 

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What I think is such a catch-22, is that if you see improvement between ages 5-7, then people who think it's not diagnosable before age 7 will say it was just grown out of.  Not that the filter helped. 

 

Because if you believe it isn't diagnosable before age 7 but can be grown out of before age 7, then...... that's the obvious answer. 

 

But that is so unfair if it does work at age 5 and prevents problems at age 7 in kids who otherwise would have had problems at age 7.

 

I think the real issue is that there are so many really kooky things out there, that it makes it hard to separate out the ones that are legitimate from the ones that aren't.  Especially for people who specialize into areas that seem to attract a lot more of the kooky things just because they are more difficult and so there are more desperate parents looking for something to help. 

 

Then there is another issue, Temple Grandin talks about this I think, where if an intervention helps 10% of kids, why is that a failed intervention, and not an intervention that legitimately helped 10% of kids.  That's actually pretty good news for those 10% of kids, even if it is not helpful for the other 90%. 

She's got a point. :) 

 

And yes - why wait to provide interventions? Wouldn't interventions help now instead of waiting? Even if their systems develop perfectly by age 7, they're still behind due to that wait time. 

 

Funny you should mention Temple Grandin. She was actually tested for APD by Burleigh, the founder of the clinic where we went. 

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Yes this thread has so much good information. that whole APD stuff is just controversial and I have no idea why. A lot of conflicting opinions and good luck getting help with it. I have consulted so many therapists and read volumes of information and still there is not concensus. 

 

There is something to be said for making the most of what they have. Which is what every parent on this thread is trying to do. In my situation my son had his hearing canal corrected and missed out on a very important auditory window. The Auditory therapy was fatiguing at times but now he really likes it and has made big gains. Will it be cured completely no. the therapy seems to be moving him into the low normal range. He can hear better in noise than before ( when he would crawl under the table) He can distinguish his guitar better and play nicely ( before he couldn't tell if he was hitting the wrong note) so yes improvement but he won't be a bartender working in a noisy environment or a stock trader on the floor of the NYSE there is just no way. 

 

But if you think about it. Its like swimming or learning a language or math. The Brain and body can learn and improve most of the time.  Improving the auditory system or preserving what they have by training the brain is possible a  lot of the time. LIPS and Barton work to do just that.  all of the reading programs do.  For my son certainly he has had a strong growth over the last 2 years. An amazing amount.  The thing is Reading to your child is auditory therapy, talking with your child is auditory therapy. the stuff my son does is just listen and respond to auditory stimuli in games to target certain skills at different frequencies and phonological input. Its all good at getting that brain center to fire.  None of the treatment is a magic pill and each case is so different there are common elements in APD but no one treatment does it all. 

 

I like these authors and own all of their books but they were written before the filter you daughter is using. I am going to see if they have anything written about that.  I also have seen that the Australia Hearing Association has developed some cool intervention programs for APD and Canada has some as well. They focus on hearing in noise, temporal mechanics, and dichotic listening. 

Handbook of Central Auditory Processing Disorder, Volume II
Comprehensive Intervention

 

I think the filter is a very very innovative idea. I certainly would have flown to Colorado when my son was 5 and tried it. I can't wait to hear more about it.

 

Please please keep us posted and update. 

Edited by exercise_guru
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If the SLP doesn't like it, move on. Your needs are pretty straightforward now and anyone could do it.

 

I would separate out language and the dichroic listening stuff and tell them hands off the part that isn't their area. I do this with ds. If you're not the person for my ds speech motor planning, you're not welcome to touch it or have an opinion. I have an expert for that and her opinion reigns. Therapists need to be managed.

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I'll bet Ivy's dc is horrific to try to read to. If you're not comprehending why would you stay? We see this with my ds in church. We have to preteach the music.

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I'll bet Ivy's dc is horrific to try to read to. If you're not comprehending why would you stay? We see this with my ds in church. We have to preteach the music.

As long as it's picture books, she's ok because she gets the visual cues to fill in what she's missing. I tried reading a book without pictures and I about lost it. 

 

Thinking back - I was so impressed one day when she was able to answer questions about Jumanji. I didn't factor in that 1) we had listened to it 6x on the way to speech and 2) she was looking at the book the whole way. 

We tried listening to some things like Adventures in Odyssey and she nixed that fast. She HATED them - I mean, if you're hearing minimal amounts, you'd hate them too. 

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Older ds had an auditory processing problem.  It was on the boundary for a disorder. By luck we stumbled into a wonderful way forward - the violin.  By spending 30 minutes to an hour a day, almost every day for 12 years, he has reprogrammed his brain to understand sound. This was not why he started -- he started violin because he loved the music, but this passion led to hard work which led to massive improvement in his auditory processing.  Because every note on the violin has to be tuned, it is not like a piano. He has to *hear* the note, determine if it is in tune by either listening to a piano note or by comparing it to notes around it, and then *fix* it.  This is crazy hard for a kid with AP issues, and ds spent 4 years struggling with the basics of this.  But he so desperately wanted to play, and in the end my dh learned to play to encourage ds to continue.  I think this must have been like having therapy every day, and it made a massive difference to his AP.

 

Ruth in NZ

Edited by lewelma
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"It doesn't exist."

"It's just another name for dyslexia." 

"They can hear just fine. There's nothing wrong." 

 

Yup. Heard it. I've also heard "She's not old enough to have it yet." Ummm....

 

Even if a clinician believes that there is not (yet) a reliable way to distinguish between kids with CAPD and kids who are just "late bloomers", the bolded is dumb. The child who will go on to receive a diagnosis at 7 or 8 had it all along. :rolleyes:

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Even if a clinician believes that there is not (yet) a reliable way to distinguish between kids with CAPD and kids who are just "late bloomers", the bolded is dumb. The child who will go on to receive a diagnosis at 7 or 8 had it all along. :rolleyes:

RIGHT? You don't catch it! lol I mean, you could have a traumatic brain injury or any number of events that cause it, but it's not like age 5 - no APD, age 6 - no APD, age 6 3/4, no APD, age 7 BOOM! There ya go.  :huh:  :lol:

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When I took my ds in at newly 6 to the university, where they have a really well-regarded APD program, they were more than happy to do parts of the SCAN on him for screening, as much as he had the behavior to do. The professor watched him quite a bit, because we were discussing whether I should come back in a year for a proper analysis. To her, it would have been present then and she should have been seeing signs of it if if were part of his mix. Since he did well on the screening and didn't seem to have symptoms, she cleared us. 

 

I think the limitation is the tools, not whether it's discernable. The SCAN3 isn't normed lower and requires behavioral control many kids aren't ready to give yet. So if this place has their own tools, it's probably a necessity and a good thing.

 

And yeah, imagine that, another professional saying something incorrect or presumptive or trite. I took my ds in for an RDI eval today and the woman (a former school teacher who now does this full-time) had all these theories about how "all" kids with autism will present a certain way, blah blah. She was really blown away that my ds could do a couple things. I sat there like, hello, we bought the book, we did the exercises, OF COURSE he has those skills...  And we just got our autism diagnosis doubled down by ANOTHER psych, adding how many to the list. I just get so worn out with people practicing out of field.

 

 

As long as it's picture books, she's ok because she gets the visual cues to fill in what she's missing. I tried reading a book without pictures and I about lost it. 

Thinking back - I was so impressed one day when she was able to answer questions about Jumanji. I didn't factor in that 1) we had listened to it 6x on the way to speech and 2) she was looking at the book the whole way. 
We tried listening to some things like Adventures in Odyssey and she nixed that fast. She HATED them - I mean, if you're hearing minimal amounts, you'd hate them too. 

 

That's a pretty significant limitation. You don't have an IQ yet, do you? I was thinking she didn't participate so it was rough. Anyways, my dd was listening to chapter books and the Lang Fairy Tales at that age. Even my ds listens to audiobooks with no pictures. It will be interesting to see how that changes as she gets her filters and her language work to bring her up to speed.

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I think the limitation is the tools, not whether it's discernable. The SCAN3 isn't normed lower and requires behavioral control many kids aren't ready to give yet. So if this place has their own tools, it's probably a necessity and a good thing.

 

 

That's a pretty significant limitation. You don't have an IQ yet, do you? I was thinking she didn't participate so it was rough. Anyways, my dd was listening to chapter books and the Lang Fairy Tales at that age. Even my ds listens to audiobooks with no pictures. It will be interesting to see how that changes as she gets her filters and her language work to bring her up to speed.

It's definitely a limitation with the tool. Like you said, for the SCAN, they do have to have a certain level of development. Some will test as early as 6, but they're not common. 

Able Kids has a picture response test that they have developed and use for children under 7. 

 

IQ was supposedly 76. Which is BS. There's no freaking way she's a 76. We actually just debating whether or not to take her back for a reevaluation. (We were told to bring her back when she's on meds for a year which is in May, but I'm not going back to that neuropsych.) 

Edited by Southern Ivy
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That IQ was 76 in Colorado or a previous run? Oh, that was the previous run. Well dude, not to state the OBVIOUS, but hello a dc who is only understanding 50% of what is said cannot POSSIBLY be demonstrating everything she knows on a verbally mediated IQ test. They could have done a non-verbal, but still she would have had to listen to the directions and wrangle with the air units, the background noise, etc.

 

No, you should rerun it at some point, yes, but you want to do it with the filters in. THAT will be interesting. And the thing is, I think her language acquisition has been so affecting by the APD that I would fight for a non-verbal IQ test. They have them. The TONI is one. I was told by someone that IQ scores drop in SLD kids as their NT peers pull ahead with language acquisition, etc. In other words, because her language is affected the IQ score will be affected too. You'd have to go non-verbal to possibly be accurate to her real inner potential.

 

Or just assume genius. :D

 

(ps. I never joke. I'm being serious. Why not? It's totally reasonable. She's scoring almost average range with only 50% of the input of life. Clearly she's quite bright.)

Edited by PeterPan
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I remember that, it definitely isn’t accurate. Just consider it a baseline for how ADHD meds and the filter work. Really! It’s not her IQ.

 

It’s not even supposedly her number, because nobody thought it was a valid representation of her ability.

Edited by Lecka
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That IQ was 76 in Colorado or a previous run? Oh, that was the previous run. Well dude, not to state the OBVIOUS, but hello a dc who is only understanding 50% of what is said cannot POSSIBLY be demonstrating everything she knows on a verbally mediated IQ test. They could have done a non-verbal, but still she would have had to listen to the directions and wrangle with the air units, the background noise, etc.

 

No, you should rerun it at some point, yes, but you want to do it with the filters in. THAT will be interesting. And the thing is, I think her language acquisition has been so affecting by the APD that I would fight for a non-verbal IQ test. They have them. The TONI is one. I was told by someone that IQ scores drop in SLD kids as their NT peers pull ahead with language acquisition, etc. In other words, because her language is affected the IQ score will be affected too. You'd have to go non-verbal to possibly be accurate to her real inner potential.

 

Or just assume genius. :D

 

(ps. I never joke. I'm being serious. Why not? It's totally reasonable. She's scoring almost average range with only 50% of the input of life. Clearly she's quite bright.)

I think that with the neuropsych I want to use, he might be ok with a non-verbal. He works closely with the dyslexia center in the city, so I have a feeling he would be more familiar with APD as well and would listen to what I'm wanting. 

 

As for the genius - this kid is definitely smart - I see it in so many immeasurable ways, but it's there. 

 

We were at the Denver Aquarium and were looking at the sea urchin exhibit. 

"Mom, where are the sea otters?" 

"What do you mean? We saw them when we first came in."

"No. Right here. I don't understand - why are they not here?" 

 

Other people tried telling her where the sea otters were and she smarted off with "Listen! I know where the sea otters were BEFORE, but WHY aren't they HERE with the sea urchins?"

 

We were all confused and just looked at her.

 

"That's what they eat, people! They need the sea urchins for food. So, WHY aren't they in here?" 

 

I said, "You're right. They DO eat sea urchins!" The other people all looked at her like "I feel stupid now." lol

It cracked me up. 

She picks up more than we realize, but it's also through lots of visuals and repetition. 

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