Just wanted to cry in OT today

[Southern Ivy]

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. 

He decided to test her and see if this was a short term memory issue. 
He would remove random items off the alphabet mat - like he removed umbrella, bike, yarn, mailbox, and hose. He would ask her where each item was and she could identify the spot where it was. Couldn't say the name of the letter, but definitely knew where the items went. 
He kept this up until the board was blank, THEN he asked her all 26 items. Except for confusing V and W, she got them all correct. 

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. 

At the end he said, Wow. She's got great short term memory, but you're right. There is definitely something keeping her from retaining the names and sounds of the letters. I honestly don't know what we're working with, but we'll figure it out. 
I think he finally saw that it's not me and lack of instruction. 

My heart just hurts for her and I wish I could figure it out. :( 
I just want to cry. 
 

[SKL]

Sorry if this has already been asked 100 times, but have you had her vision checked by a developmental optometrist?

 

My eldest was taking forever to learn her letters and numerals, until about halfway through vision therapy.  Then in a very short time she knew them all.

 

Of course it might be something else, but this is something I'd check if you have not already done so.

[hornblower]

but you're getting more pieces of the puzzle!  You learned something new about her brain. That's a good thing. 

I'd consider that she has very good spatial memory. I think remembering a thing (yam) is quite different than remembering a concept (letter Y) .... 

[Southern Ivy]

Sorry if this has already been asked 100 times, but have you had her vision checked by a developmental optometrist?

 

My eldest was taking forever to learn her letters and numerals, until about halfway through vision therapy.  Then in a very short time she knew them all.

 

Of course it might be something else, but this is something I'd check if you have not already done so.

Yes. Since she doesn't know her alphabet and can't read, they had to do some modified testing. He was very open and honest with us. He did say that he didn't think it was visual, but that it seemed more like it might be auditory. (He suggested we look into Auditory Processing Disorder and see if the characteristics match.) He gave me tips on learning the alphabet and said that once she knows that, he'd love to help us if we felt like utilizing their vision therapy and reading program. But, he said that since we were homeschooling, he knew that I could do it at home; basically he was saying, "don't waste your money here when you can teach her at home, but we'll be here later if you need." 

 

We're looking into APD, but people around here don't test until 7 or 8. We're looking into a program in Colorado that will test her now. We have an appointment in February, but it's so much money. I keep second guessing myself on whether we should go or not. 

[PeterPan]

I'm sorry, I've forgotten. What was the result of psych testing? You did CAPD screening or psych testing or both? 

 

There's some more complex testing an SLP can do for naming and how the brain organizes words and concepts and categories in the brain. You're describing a naming issue, which is common to some disabilities, yes. You're correct to be concerned. But you'd like to know how far the language issue goes, how extensive it is, how many other areas of language are affect. Even if they've done *some* language testing, they can do *more*.

[prairiewindmomma]

I think today was an awesome experience for you guys---you got outside confirmation that there are issues, and someone took you seriously.  That's a good chunk of the battle, to be honest.

 

You guys will figure this out.  She is young. You have time.  

 

(Check out Barton and LiPS if you haven't already.)

[PeterPan]

What test would they be doing if you went now?? What matters is the test. For instance, there's the TAPS, and that can be done at that age, sure. An SLP can run it. The SCAN is your standard APD testing, and that's going to be normed. I don't even know if it's normed for age 5. 

 

Don't jump on testing and don't drive a long way super fast. Like driving can be good, but first remind us what you've had and figure out what they're offering to do. There's a LOT more digging your local people can do. Usually when you go in, the first eval appt is kind of cursory, screening. Then they dig in. Also, all professionals are NOT EQUAL.

 

What was this OT doing anyway? I don't know, it's such a hairbrained profession. 

[hornblower]

This is the 5 year old that doesn't know the alphabet? I'm not really convinced that this is a problem actually.... 

[PeterPan]

You're saying he was doing modified testing, but what in the world was he doing??? Nobody plans on a 5 yo reading for evals. That's absurd. Was the guy making stuff up? Like his own stuff? Who was he and what was he trained in? 

 

Therapy people are like used car salesmen. They go places, find stuff, and they SELL it. So they're like oh I got trained on this therapy, I can sell it to you! They get trained on another system (behavioral stuff, reflex stuff, you name it) and they're like oh that would be good for you! It's totally idiotic. 

 

I've been to so many of them and the whole profession just is wearying. They're always nice people. They sometimes do some good. They cost a lot of money. 

 

There should have been forms and it should have been stuff like gross motor, fine motor, visual motor, blah blah. Should have been real standard stuff for an initial eval.

 

Be skeptical at all times. 

[Southern Ivy]

but you're getting more pieces of the puzzle!  You learned something new about her brain. That's a good thing. 

 

I'd consider that she has very good spatial memory. I think remembering a thing (yam) is quite different than remembering a concept (letter Y) .... 

I have to keep reminding myself of that fact. I know more and more about her. 

I told my mom that I feel like I'm working a puzzle with missing pieces, extra pieces, and I don't know what the picture is supposed to be. It's so confusing trying to weed out what could be a symptom or what's just her quirks. 

 

This same child who doesn't know her alphabet told me all about how the moon's light is just a reflection of the sun and she also gave me a whole speech on the Sphinx and pyramids when she saw a picture of them. I know she's super smart. I just have to figure out how to unlock it all. 

[PeterPan]

Have you done the student screening for Barton? Does she pass that? 

 

I'd be MUCH more concerned about whether she passes that test. If you don't pass that, you've definitely got problems. Naming gig, maybe it could be several things. Working memory would not be one of them. It's a naming issue. 

 

She's going to need some interventions over the long run. You know that. Naming is pretty fun to work on and it's in the province of an SLP. SLP, happily, is pretty concrete. They actually get trained in stuff. You go in and ask for evals and they do them. So if she hasn't had that eval, then I would start by just making a list of any and all language quirks you've ever noticed with her. Then, with that list in hand, you can call up a good SLP and talk with them on the phone and say what you're noticing and see if they think some testing would be wise.

 

SLP testing is part of a thorough APD eval btw. We're not sending you on rabbit trails here. Around here, a private, high end audiology clinic that does the APD evals won't even see you till you've done the SLP and psych evals. 

 

An APD eval is frustrating, because on the one hand you learn stuff and on the other hand there's almost squat they can do about it. That's why there's no rush. If the tools to diagnose aren't normed for that age, it's pointless to drive out of state for it. Language stuff is stuff you can work on NOW. That actually has interventions. 

[Lecka]

This reminds me of when my son did Zoo Phonics, and they had a picture of a letter S looking like a snake.

 

He knew snake and the motion they used.

 

Couldn't get to the "s" sound.

 

He couldn't segment "sn" to get "s" so actually snake was a really poor choice of a key word for him.

 

I'm sure if you are doing a quality program it will be good -- but Wiley Blevins had some good recommendations for letter sounds to me. He writes informational books, not curriculums, but still helpful and maybe available at the library!

 

Learning letter sounds can be very hard, just because it is "supposed" to be easy doesn't mean that it "is" easy if a child specifically has problems with this exact thing!

 

Have you checked out dyslexia resources like Overcoming Dyslexia or the Barton website?

 

Bottom line -- letter sounds can be really hard, really, really hard.

 

My older son is a solid reader now, it does get better for a lot of kids. It does take time but slow and steady can win the race!

 

A word like "mailbox" would work for a lot of kids, but honestly it is not such an easy word to segment the first letter sound to get it.

 

It sounds like this game is measuring her ability to segment a word into sounds (or at least the initial sound plus the rest of the word) and that she doesn't have that skill yet, or that it is easier for her with some letters and/or key words than others.

 

It really is okay, it is a skill and she can learn and improve.

 

I am assuming the game is like -- there is a word and she should identify the first sound? And then associate that first sound to a letter?

 

If she can isolate the first sound, but not associate the sound with the letter from memory -- that is another skill.

 

I am going to link another book from Amazon, it has a nice foreward, but it wasn't something that would work great for my sons as it is more for kids in general and not for kids needing extra help (imo).

 

https://www.amazon.com/gp/aw/d/1557663211/ref=mp_s_a_1_2/131-1946208-1372811?ie=UTF8&qid=1510177721&sr=1-2&pi=AC_SX236_SY340_QL65&keywords=Phonemic+Awareness&dpPl=1&dpID=51LepjZqhyL&ref=plSrch

 

Both my sons -- one qualified for speech therapy anyway for articulation and got help in speech therapy. My other son qualifies for speech therapy for articulation, too, and he has had phonemic awareness goals in speech therapy.

 

Anyway -- my older son was this way and he really is a solid reader now. He tested at level Z last year at the end of 6th grade.

[PeterPan]

I just have to figure out how to unlock it all. 

 

Language testing. You're saying she's gifted at that you're noticing unexpected language holes. Language testing by an SLP. 

 

A $$$$ neuropsych will do some language testing, but only at the screening level. The tests are expensive to buy for the practitioner, so you need someone who sees a lot of challenging kids, NOT just some random nice SLP, kwim? 

[Lecka]

Also she did get 5 correct! That shows the concept is there, which is huge! She needs her skill level to come up, though, it is true. Honestly -- celebrate every letter, and keep in mind there are only 26! It isn't "such" a big number, she is about 20% there :)

[PeterPan]

There's a CTOPP normed for that age too.

[PeterPan]

Lecka, was that Z in F&P or something else? I was just looking at the lists, and Z in F&P would be really good!! :D

[Lecka]

I looked at your other post -- if you have auditory processing mentioned, look at dyslexia. Look at the Barton website. Find out about "phonemic awareness" and "phonological awareness." Those are the buzz words you want.

 

OT also helped my older son but I wouldn't get my reading/letter-learning information there -- it isn't there specialty even if they do help.

 

My younger son is a bit mysterious -- we don't know if OT helped him or if he grew out of some things.

 

But if OT is working for goals you have and seems like a good experience for your daughter, it is good, it just might not be a reading solution by itself.

 

She sounds like a delightful child :)

[Lecka]

Yes, he was assessed in Z in Fountal and Pinnell. I am bragging a bit (though I think it is 7th grade level and he was at the end of 6th grade).

 

And yeah serious struggles to learn letter sounds in Kindergarten. It isn't too soon to look at it as something to pursue. Now -- you might pursue and then think "really it's fine." But when there are some red flags for dyslexia then it is an appropriate age.

Edited November 8, 2017 by Lecka

[Southern Ivy]

I'm sorry, I've forgotten. What was the result of psych testing? You did CAPD screening or psych testing or both? 

 

There's some more complex testing an SLP can do for naming and how the brain organizes words and concepts and categories in the brain. You're describing a naming issue, which is common to some disabilities, yes. You're correct to be concerned. But you'd like to know how far the language issue goes, how extensive it is, how many other areas of language are affect. Even if they've done *some* language testing, they can do *more*.

No CAPD testing yet. The audiologists in this area won't test until 7, MAYBE 6, but highly unlikely. 

Psych test came back as "very ADHD" with "low processing speeds" and FSIQ of 76, but basically said that the IQ probably wasn't accurate since she had such a hard time focusing. 

(Since then, I've done research on CAPD and I think dd was misdiagnosed. I could be wrong, but symptoms of CAPD and ADD overlap. There is some hyperactivity, but she can focus in speech just fine. Could also be both. I don't know yet.) 

 

She had the CELF and has a language deficiency which they are working on as well.

 

I think today was an awesome experience for you guys---you got outside confirmation that there are issues, and someone took you seriously.  That's a good chunk of the battle, to be honest.

 

You guys will figure this out.  She is young. You have time.  

 

(Check out Barton and LiPS if you haven't already.)

We did the screening for Barton, but she couldn't follow the multi-step directions when we did it 2 months ago. We're working on multi-step directions now, so maybe soon?

 

What test would they be doing if you went now?? What matters is the test. For instance, there's the TAPS, and that can be done at that age, sure. An SLP can run it. The SCAN is your standard APD testing, and that's going to be normed. I don't even know if it's normed for age 5. 

 

Don't jump on testing and don't drive a long way super fast. Like driving can be good, but first remind us what you've had and figure out what they're offering to do. There's a LOT more digging your local people can do. Usually when you go in, the first eval appt is kind of cursory, screening. Then they dig in. Also, all professionals are NOT EQUAL.

 

What was this OT doing anyway? I don't know, it's such a hairbrained profession. 

 

The group we are wanting to go see for CAPD testing is Able Kids Foundation in Ft Collins, CO. They're testing is different slightly different from the SCAN, but I've heard from many people who have been who have had great results, spoken with them directly and read their reports (and follow up reports). So, I feel confident in their testing, but I'm a bit leery of spending the money on a "maybe" right now. 

 

The OT is working on retained ATNR, some fine motor skills, helping her with sensory processing issues, etc. Today was a bit different with the alphabet. 

 

 

This is the 5 year old that doesn't know the alphabet? I'm not really convinced that this is a problem actually.... 

The only concern is that she was in preschool for 2 years. I know some of it is readiness, but mommy gut says there's something more. Especially since she had consistent exposure and teaching of it. 

 

You're saying he was doing modified testing, but what in the world was he doing??? Nobody plans on a 5 yo reading for evals. That's absurd. Was the guy making stuff up? Like his own stuff? Who was he and what was he trained in? 

 

Therapy people are like used car salesmen. They go places, find stuff, and they SELL it. So they're like oh I got trained on this therapy, I can sell it to you! They get trained on another system (behavioral stuff, reflex stuff, you name it) and they're like oh that would be good for you! It's totally idiotic. 

 

I've been to so many of them and the whole profession just is wearying. They're always nice people. They sometimes do some good. They cost a lot of money. 

 

There should have been forms and it should have been stuff like gross motor, fine motor, visual motor, blah blah. Should have been real standard stuff for an initial eval.

 

Be skeptical at all times. 

He is a developmental optometrist and came recommended. He did a full developmental exam, but they were not able to do the tests that the would do for kids that read. That's all I meant by modified. 

I feel like if he had wanted to sell me something, he would have recommended they teach her the alphabet. As it was, he gave me books to read and some helpful instructions to try to help her with the alphabet and directed me to APD. So, I feel like he was at least honest about what he can and can't do at this point. 

Edited November 8, 2017 by Southern Ivy

[Southern Ivy]

Have you done the student screening for Barton? Does she pass that? 

 

I'd be MUCH more concerned about whether she passes that test. If you don't pass that, you've definitely got problems. Naming gig, maybe it could be several things. Working memory would not be one of them. It's a naming issue. 

 

She's going to need some interventions over the long run. You know that. Naming is pretty fun to work on and it's in the province of an SLP. SLP, happily, is pretty concrete. They actually get trained in stuff. You go in and ask for evals and they do them. So if she hasn't had that eval, then I would start by just making a list of any and all language quirks you've ever noticed with her. Then, with that list in hand, you can call up a good SLP and talk with them on the phone and say what you're noticing and see if they think some testing would be wise.

 

SLP testing is part of a thorough APD eval btw. We're not sending you on rabbit trails here. Around here, a private, high end audiology clinic that does the APD evals won't even see you till you've done the SLP and psych evals. 

 

An APD eval is frustrating, because on the one hand you learn stuff and on the other hand there's almost squat they can do about it. That's why there's no rush. If the tools to diagnose aren't normed for that age, it's pointless to drive out of state for it. Language stuff is stuff you can work on NOW. That actually has interventions. 

 

We did the initial screening, but due to multi-step directions, she did not pass the last level. That was 2 months ago. She's been working with her SLP on multi-step directions and we're almost at 100% with 2 steps. Getting better at 3 steps. So, we'll try it again once she's doing a bit better. 

 

She had the CELF done by one of the best SLPs in the area. We currently go to speech 2x a week. We have goals for the next year. 

I expressed my concern about CAPD and the SLP said she could understand my concern. She spoke with her contacts in this area and the clinic she works directly with in the Kansas City area. They all agreed that at this point, they would want to wait until my daughter is 7 or 8. 

 

 

Language testing. You're saying she's gifted at that you're noticing unexpected language holes. Language testing by an SLP. 

 

A $$$$ neuropsych will do some language testing, but only at the screening level. The tests are expensive to buy for the practitioner, so you need someone who sees a lot of challenging kids, NOT just some random nice SLP, kwim? 

?? I honestly don't know if she's gifted. I see my nephew being gifted. My daughter? I don't know. 

My neuropsych was not impressive, imo. We won't be going back to her next year for a follow up. I do have a 'in' with another neuropsych who is really good and works with the dyslexia center in town. I think he'll do well for her. I'm also going to ask for a non-verbal IQ. I fully believe that language was the downfall of the last testing. 

 

Also she did get 5 correct! That shows the concept is there, which is huge! She needs her skill level to come up, though, it is true. Honestly -- celebrate every letter, and keep in mind there are only 26! It isn't "such" a big number, she is about 20% there :)

 

She did. We totally cheered her for that. 

She can recognize so many letters - Hey!! That's the letter that my friend Avery starts with! Hey! Kinley starts with that letter! Or if she sees a letter in her name, she recognizes it, spells her name to get to the letter name, then tells me. But, she can't recall the names on her own.

(She remembers the Avery/Kinley thing from preschool and seeing their names printed.) 

 

There's a CTOPP normed for that age too.

That's right! I forgot about the CTOPP. We can get it done at the dyslexia center for $50. 

 

I looked at your other post -- if you have auditory processing mentioned, look at dyslexia. Look at the Barton website. Find out about "phonemic awareness" and "phonological awareness." Those are the buzz words you want.

 

OT also helped my older son but I wouldn't get my reading/letter-learning information there -- it isn't there specialty even if they do help.

 

My younger son is a bit mysterious -- we don't know if OT helped him or if he grew out of some things.

 

But if OT is working for goals you have and seems like a good experience for your daughter, it is good, it just might not be a reading solution by itself.

 

She sounds like a delightful child :)

I've looked at it and while it might be a phonological processing issue, I'm not sure it's just that. She has a lot of other signs of APD. She fits a lot of the signs in the book "When the Brain Can't Hear". (of course, like I mentioned somewhere else - the some of the symptoms overlap with ADD and SPD, so it's hard to know for sure without the testing.)

 

Oh, no. I don't expect him to continue to work with her, maybe occasionally, or he'll build it into whatever he's doing. We're mainly focusing on some fine motor, some retained reflexes, and sensory processing things. 

 

and thank you. I find her delightful most days. lol She's being a pest right now, but for the most part, she's a pretty good kid. :) Keeps us laughing. 

 

 

For example: 

 

R: Hey mom, are superheroes real? 

M: No, not really. They're pretend. 

R: Oh. Hmm, well, the movies have told me they're real. So, that might be a problem. I might have made a big water mess in the kitchen that they were supposed to clean up. 

 

(She learned about her own superpower - the power of cleaning up!)

Edited November 8, 2017 by Southern Ivy

[VinNY]

This was my daughter. She has CAPD and is language impaired.  It takes more time to develop phonemic awareness and sound symbol skills. Keep at it..we used Earobics for years, LiPS and Orton Gillingham reading material. She is now 16..I still work on her reading and managing her APD but she has come a long way.  She was officially diagnosed at age 7as CAPD (also apraxia of speech) by SLP/Audiologist.  A Neuropsych confirmed that at age 12 where they usually say Add..she said hers was auditory ..as well as other issues.

Have her work with a SLP. My daughter struggled with reading and taking directions. You need to add a visual piece to help with learning. Lots of repetition etc.. 

 

I loved the input our OT gave in regards to my child. 

  

 

 

[Southern Ivy]

This was my daughter. She has CAPD and is language impaired.  It takes more time to develop phonemic awareness and sound symbol skills. Keep at it..we used Earobics for years, LiPS and Orton Gillingham reading material. She is now 16..I still work on her reading and managing her APD but she has come a long way.  She was officially diagnosed at age 7as CAPD (also apraxia of speech) by SLP/Audiologist.  A Neuropsych confirmed that at age 12 where they usually say Add..she said hers was auditory ..as well as other issues.

Have her work with a SLP. My daughter struggled with reading and taking directions. You need to add a visual piece to help with learning. Lots of repetition etc.. 

 

I loved the input our OT gave in regards to my child. 

May I PM you later? I have a couple of questions about things you saw. 

[Lecka]

Yes -- the reading side may be just one part of everything. There may be more than just reading if she has something where reading is just one part of it.

 

But for the reading part -- probably this dyslexia stuff will still be a good fit, or at least it is possible.

[Southern Ivy]

It sounds like this game is measuring her ability to segment a word into sounds (or at least the initial sound plus the rest of the word) and that she doesn't have that skill yet, or that it is easier for her with some letters and/or key words than others.

 

I am assuming the game is like -- there is a word and she should identify the first sound? And then associate that first sound to a letter?

 

If she can isolate the first sound, but not associate the sound with the letter from memory -- that is another skill.

 

I am going to link another book from Amazon, it has a nice foreward, but it wasn't something that would work great for my sons as it is more for kids in general and not for kids needing extra help (imo).

 

https://www.amazon.com/gp/aw/d/1557663211/ref=mp_s_a_1_2/131-1946208-1372811?ie=UTF8&qid=1510177721&sr=1-2&pi=AC_SX236_SY340_QL65&keywords=Phonemic+Awareness&dpPl=1&dpID=51LepjZqhyL&ref=plSrch

 

Both my sons -- one qualified for speech therapy anyway for articulation and got help in speech therapy. My other son qualifies for speech therapy for articulation, too, and he has had phonemic awareness goals in speech therapy.

 

Anyway -- my older son was this way and he really is a solid reader now. He tested at level Z last year at the end of 6th grade.

He wasn't even doing that. lol He was making it so easy for a typical kid who has had 2-2.5 years of alphabet instruction. He'd ask her what it was and she'd tell him. He'd say "Good. Goat - g-g-Goat. Goat starts with G. Where is the G?" 

 

 

Yeah, we had articulation therapy from 3-4, then graduated out. We went back in for new testing when we were noticing some problems with other people understanding her. She didn't have an articulation problem, per se. More just general language, but it made it hard. Her plurals are all over the place; subject/verb agreement? Gah. It's bad.

If I remember correctly, (just being lazy and not finding her paperwork) her expressive language was at about 3.5years instead of 5. So, not completely awful, but definitely something that requires work. 

[Southern Ivy]

Yes -- the reading side may be just one part of everything. There may be more than just reading if she has something where reading is just one part of it.

 

But for the reading part -- probably this dyslexia stuff will still be a good fit, or at least it is possible.

Yes, a lot of programs geared towards dyslexia will work for her if it does end up being CAPD. Heck, those can't do anything but help whoever uses them. We just need to get her to the point that she can pass the Barton screening!

I need to look into LiPS more. 

[Lecka]

I wonder about the eval coming back "very ADHD"? I don't have any first-hand experience, but I've heard second-hand about kids improving in following multi-step directions when they treated the ADHD with medication. Just mentioning it, I know there is a lot that goes into that and it sounds like you are doubtful about the ADHD.

 

Edit: not that I think that would help her reading, or mean she doesn't have APD or related issues, but kids can also have ADHD.

Edited November 8, 2017 by Lecka

[EKS]

My son wouldn't have been able to do what you're describing at 5 either (she is 5, is that correct?).  He is 2E--gifted with dyslexia--but I suspect that there are a lot of 5yo out there who don't have any diagnosable conditions who don't know the letter names/sounds.

 

 

[Lecka]

For kids whose parents are doing a relaxed start -- yes.

 

For kids who are being taught -- yeah, it is expected to know many letters (maybe not every letter, but many) half-way through Kindergarten. Not knowing many of them, with instruction, is a red flag.

 

Now if somebody has just turned 5, or hasn't had much exposure, etc, then I agree.

 

And even then -- something can be a red flag, and then not still be a red flag after looking into it.

 

But there are age norms for phonemic awareness, so it's possible to see if kids are on track or missing/late on skills at this age.

 

People who are reading their kids books with rhymes or nursery rhymes can be considered to developing their kids' phonemic awareness, too ;)

 

But I read my son all kinds of rhyming books and did nursery rhymes with him, but it didn't help him to develop phonemic awareness.

 

That is more of a red flag I think, but it is easier to notice letters and letter sounds and talk about them. But it isn't exactly all about "oh 5-year-olds are behind if they haven't drilled their letters." It's more that it is possible it is a sign of weak phonemic awareness.

 

I'm not sure if that makes sense -- just trying to explain a little more :) Bc certainly kids with no underlying issues will still be developing their phonemic awareness whether they learn letters at age 5 or not. But for kids who are exposed -- it can be a sign their phonemic awareness is weak.

 

And -- having a weakness in auditory processing could be a reason to have weak phonemic awareness! So it can go together.

Edited November 9, 2017 by Lecka

[EKS]

For kids whose parents are doing a relaxed start -- yes.

 

For kids who are being taught -- yeah, it is expected to know many letters (maybe not every letter, but many) half-way through Kindergarten. Not knowing many of them, with instruction, is a red flag.

 

I agree that it sounds like a red flag since she has been taught.  But it shouldn't have been discombobulating to an OT.

 

Also, I should add that the thing that it is most likely a red flag for is dyslexia, which is something that can be dealt with and has good outcomes.  The sensory stuff tends to go with dyslexia.  

[Lecka]

Yeah, I agree the OT sounds a little judgmental! It's not necessary, they should make kids feel good about how they are doing, whatever level they are at.

Edited November 9, 2017 by Lecka

[Southern Ivy]

I wonder about the eval coming back "very ADHD"? I don't have any first-hand experience, but I've heard second-hand about kids improving in following multi-step directions when they treated the ADHD with medication. Just mentioning it, I know there is a lot that goes into that and it sounds like you are doubtful about the ADHD.

Oh yeah, it definitely can help.

The neuropsych wanted us to medicate and said that she won't do well on any testing until she's medicated, but we just really felt like something was off, so we decided to hold off on medicating for a bit. But, she's still doing really well in speech with the multi-step directions. The SLP has been really pleased with her progress. 

 

As for the skepticism -

There were a lot of weird things in the psych eval that still have me baffled. I honestly I have never seen her act the way she acted in that evaluation. If I was observing her for the first time, I would say she has ADHD as well. She was all over the place and not paying attention. Those behaviors were atypical for her, though. 

As I've done more research on APD and have learned more about SPD from the OT, I've seen a lot of actions and reactions in her that look like ADHD, but can also very likely be APD or SPD. The additional signs of APD (mishearing words, the alphabet thing, asking "what?" ALL THE TIME, inability to rhyme, etc) make me lean towards a misdiagnosis. 

 

[Southern Ivy]

For kids whose parents are doing a relaxed start -- yes.

 

For kids who are being taught -- yeah, it is expected to know many letters (maybe not every letter, but many) half-way through Kindergarten. Not knowing many of them, with instruction, is a red flag.

 

Now if somebody has just turned 5, or hasn't had much exposure, etc, then I agree.

 

And even then -- something can be a red flag, and then not still be a red flag after looking into it.

 

We've worked on it at home; she had extra work at preschool when we realized she wasn't getting it; she's watched The Letter Factory and Amazing Alphabet Amusement Park so many times it's not even funny; we've started using pre-reading AAR; we do Alphabet "Spot It" and she can find the matches faster than I can, but has to go to the alphabet chart on the wall to find out the name. 

She has so much exposure that there SHOULD, by now, be at least 50% retention. 

 

But there are age norms for phonemic awareness, so it's possible to see if kids are on track or missing/late on skills at this age.

 

People who are reading their kids books with rhymes or nursery rhymes can be considered to developing their kids' phonemic awareness, too ;)

 

Good heavens, this child can't rhyme to save her life. Currently working on it in speech and at home. Anything beyond rat/cat/bat...not happening. And if it's another word with at, but not those? She won't get it. 

 

But I read my son all kinds of rhyming books and did nursery rhymes with him, but it didn't help him to develop phonemic awareness.

 

That is more of a red flag I think, but it is easier to notice letters and letter sounds and talk about them. But it isn't exactly all about "oh 5-year-olds are behind if they haven't drilled their letters." It's more that it is possible it is a sign of weak phonemic awareness.

 

I'm not sure if that makes sense -- just trying to explain a little more :) Bc certainly kids with no underlying issues will still be developing their phonemic awareness whether they learn letters at age 5 or not. But for kids who are exposed -- it can be a sign their phonemic awareness is weak.

 

Yep - makes sense. :)  Phonemic awareness was one of the first things I looked into when we noticed this all back in January. We had psych testing in May; felt something wasn't right and got the speech/OT evaluations. Been doing more in depth questioning and reading about APD since August.  

 

And -- having a weakness in auditory processing could be a reason to have weak phonemic awareness! So it can go together.

 

Oh, for sure! 

 

[Southern Ivy]

I agree that it sounds like a red flag since she has been taught.  But it shouldn't have been discombobulating to an OT.

 

Also, I should add that the thing that it is most likely a red flag for is dyslexia, which is something that can be dealt with and has good outcomes.  The sensory stuff tends to go with dyslexia.  

There's a lot of overlap with APD and Dyslexia. 

 

These are some CAPD signs from the audiologist's website that we're going to go to. 

My daughter fits every one. (There are many more in the book When the Brain Can't Hear and she fits a big chunk of them as well.) 

 

 

• Difficulty following directions
• Sensitive to loud sounds
• Easily distracted, frustrated, and/or confused
• Overwhelmed in noisy places
• Exhibits a short attention span
• Struggles to complete assignments
• Easily upset in new situations
• Labeled as an underachiever or daydreamer
• Experiences anxiety or tension
• Lacks self-confidence
• Forgetful
• Shows restlessness and has problems sitting still
• Difficulty with transitions and/or changes in routine

   

Diane Craft also states that this is almost always a sign of CAPD: 

• Difficulty learning names of alphabet letters when younger

   

I will say - dyslexia was one of the first things I considered in the beginning. According to Barton, APD IS dyslexia and a lot of the symptoms overlap, but according to the CAPD community, they're not the same. So, one and the same? Different? I don't know. But, dyslexia is definitely in the back of my mind as well. 

Edited November 9, 2017 by Southern Ivy

[Southern Ivy]

***I should have stated from the beginning....this was more of a rant. I was just so frustrated and heartbroken for her today. I knew she was extremely frustrated and just tried to hold it in until she wouldn't see me cry for her. 

But, I do love all the help, extra info and advice. :) 

[EKS]

There's a lot of overlap with APD and Dyslexia. 

 

These are the diagnoses my son got on the way to the dyslexia diagnosis:

 

"Just slow," vision issues requiring VT, APD, SPD, ADHD, and Asperger's.  All of them were a piece of the puzzle but none were the thing that made it all fit together the way dyslexia was.  (And the Asperger's diagnosis was totally wrong.)

 

I should also say that having an APD diagnosis wasn't all that helpful.  

[Southern Ivy]

These are the diagnoses my son got on the way to the dyslexia diagnosis:

 

"Just slow," vision issues requiring VT, APD, SPD, ADHD, and Asperger's.  All of them were a piece of the puzzle but none were the thing that made it all fit together the way dyslexia was.  (And the Asperger's diagnosis was totally wrong.)

 

I should also say that having an APD diagnosis wasn't all that helpful.  

Thank you. That's very helpful. 

 

I'm honestly not surprised about your son and those diagnoses. Dyslexia was one of the first things I considered in the beginning. I'm sure you now, but according to Barton, APD IS dyslexia and a lot of the symptoms overlap; but according to the CAPD community, they're not the same. So, one and the same? Different? I don't know. But, dyslexia is definitely in the back of my mind as well. 

 

The main reason we are going to this place in Colorado is that if she DOES have APD, she might be a candidate for their filter.

There is a specialized filter that they have developed that has been very helpful for the kids who have had it and some of the adults who have chosen that route. 

I just learned about them a few months ago, but I've since talked to several parents whose kids have seen drastic changes and a couple of adults who have been happy with it as well. (Not all are candidates as some show improvement with it, some don't. Just depends on the type of APD and the severity, I think.) 

 

[Ottakee]

Do YOU see the ADD/ADHD?  Inattention?  Highly distracted? If so, then medication for the ADHD might really help.  My daughter went gained over 2 years of reading ability and other academics in less than 6 months after starting meds.

 

You might want to look at the I See Sam program for learning to read.  It works very well with dyslexics, eye tracking issues, etc.............AND it starts out with 5 letters (sounds) blended into 3 words and they are reading their first book.  It takes them about 26 weeks to get through all 26 letters of the alphabet.  Their idea is to teach a few and start using them, solidify them, etc. and then slowly add a new letter/sound at a time and work hard at that before adding more.

 

www.iseesam.com  www.3rsplus.com  You can google for the first 52 books (K level) to print out for free as well.

[Southern Ivy]

Do YOU see the ADD/ADHD?  Inattention?  Highly distracted? If so, then medication for the ADHD might really help.  My daughter went gained over 2 years of reading ability and other academics in less than 6 months after starting meds.

 

You might want to look at the I See Sam program for learning to read.  It works very well with dyslexics, eye tracking issues, etc.............AND it starts out with 5 letters (sounds) blended into 3 words and they are reading their first book.  It takes them about 26 weeks to get through all 26 letters of the alphabet.  Their idea is to teach a few and start using them, solidify them, etc. and then slowly add a new letter/sound at a time and work hard at that before adding more.

 

www.iseesam.com  www.3rsplus.com  You can google for the first 52 books (K level) to print out for free as well.

Honestly, it depends. If it's something that's very language intensive, heck yeah. Otherwise, not really. 

Right now, she's playing Go Fish with my husband and not acting any differently than other kids. She was very calm today while working with the OT. Speech, she can be fidgety during the multi-step directions work, but that again is very language intensive for her. 

 

I'll look into I See Sam. Thanks. :) 

 

 

Edited November 9, 2017 by Southern Ivy

[kbutton]

There is a school of thought that vestibular processing and retained reflexes feed into APD. I think this has some credence--my son's hearing in background noise improved with some reflex work.

 

He's getting OT again (previous OT didn't do reflex work; it was done in VT), and she is hitting reflexes hard. She's also doing vestibular stuff (called astronaut training). It's from the Interactive Metronome people. I will try to update you if it seems to help the APD.

 

It's hard to put it all together. My son also has ADHD, and knowing where things start, stop, and overlap is maddening. 

[Southern Ivy]

There is a school of thought that vestibular processing and retained reflexes feed into APD. I think this has some credence--my son's hearing in background noise improved with some reflex work.

 

He's getting OT again (previous OT didn't do reflex work; it was done in VT), and she is hitting reflexes hard. She's also doing vestibular stuff (called astronaut training). It's from the Interactive Metronome people. I will try to update you if it seems to help the APD.

 

It's hard to put it all together. My son also has ADHD, and knowing where things start, stop, and overlap is maddening. 

The only retained reflex my daughter had was ATNR, but we're working on that one a lot. Fascinating about the background noise for him, though. That's great!

 

But, you are right. The overlap is maddening. It makes me second guess so much when I think I should just follow my gut. 

And please do update me. I've actually had several PMs about different programs for APD (here and on Facebook). I'm definitely interested in seeing what works and what doesn't. 

[PeterPan]

No CAPD testing yet. The audiologists in this area won't test until 7, MAYBE 6, but highly unlikely. 

Psych test came back as "very ADHD" with "low processing speeds" and FSIQ of 76, but basically said that the IQ probably wasn't accurate since she had such a hard time focusing. 

(Since then, I've done research on CAPD and I think dd was misdiagnosed. I could be wrong, but symptoms of CAPD and ADD overlap. There is some hyperactivity, but she can focus in speech just fine. Could also be both. I don't know yet.) 

 

She had the CELF and has a language deficiency which they are working on as well.

 

We did the screening for Barton, but she couldn't follow the multi-step directions when we did it 2 months ago. We're working on multi-step directions now, so maybe soon?

 

 

The group we are wanting to go see for CAPD testing is Able Kids Foundation in Ft Collins, CO. They're testing is different slightly different from the SCAN, but I've heard from many people who have been who have had great results, spoken with them directly and read their reports (and follow up reports). So, I feel confident in their testing, but I'm a bit leery of spending the money on a "maybe" right now. 

 

The OT is working on retained ATNR, some fine motor skills, helping her with sensory processing issues, etc. Today was a bit different with the alphabet. 

 

 

The only concern is that she was in preschool for 2 years. I know some of it is readiness, but mommy gut says there's something more. Especially since she had consistent exposure and teaching of it. 

 

He is a developmental optometrist and came recommended. He did a full developmental exam, but they were not able to do the tests that the would do for kids that read. That's all I meant by modified. 

I feel like if he had wanted to sell me something, he would have recommended they teach her the alphabet. As it was, he gave me books to read and some helpful instructions to try to help her with the alphabet and directed me to APD. So, I feel like he was at least honest about what he can and can't do at this point. 

 

Ok, I want to keep reading. You have a link on that eval place? My concern with the testing is going to be whether she has the language to be ready for it. Of course, that in itself is also a factor in the diagnosis in a way. How is she with background noise? Difficulty discriminating background noise, where the dc is functional deaf, is THE BIG symptom. There are other symptoms, but that is going to be your oh my lands, really huge, glaring, glaring thing. And if that's present, just chalk it up, done deal. If that's not present, me personally, I'd probably treat the stuff you know how to treat. I don't know. Depends on what they're offering to run. Answer might not be more evals but rather in genetics. I'm not meaning to be like a downer or something, just saying the truth.

 

It also sounds like you're saying either/or on the ADHD and CAPD, which I think it's terribly unlikely. I think you're dealing with an *and* kinda situation. So it's only whether it's ADHD *and* an APD *and* SPD *and* this or that, not *or*. Sigh. There's no statistical probability to think they're not both going on. Sometimes with girls you think it isn't and it is. So my advice is assume *and* and be pleasantly surprised if, 10 years from now, it turns out to be otherwise.

 

If the place in CO is skillful in more things, including genetics, *and* you have the background noise issues where she goes functionally deaf in large settings, you could consider going. If they CO place is not skillful in a lot of other things and she has the background issues, you could consider waiting. Reason is, if she has the background noise issues, you already have your answer. There's nothing to do about it and you got that piece answered. So why would you spend $$$$$$ to be told something that is already obvious if they can't add to your knowledge of what to do? But maybe they're adding something?

 

If the dc doesn't have issues in background noise and the clinic in CO doesn't do more than APD, then it doesn't make sense to go. 

 

I'll keep reading what you've written.

[Storygirl]

The list of things that seem to indicate CAPD to you could be dyslexia plus ADHD. In my opinion, the dyslexia diagnosis would give you a starting point, because you would know to use materials designed for dyslexia when teaching her.

 

Honestly, the dyslexia thing should be easy to figure out if you get that CTOPP. I'm surprised your psych didn't run it, because it's pretty standard when dyslexia is suspected.

 

I wondered about auditory processing for DD12 at times, but her diagnosis is dyslexia plus probable ADHD.

[PeterPan]

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. 

[PeterPan]

I think it would take the younger normed CTOPP for a 5 yo. The psych may not have had it.

[PeterPan]

The TAPS is widely available with SLPs and normed down to that age I think. My ds failed the half you'd expect a dyslexic to and didn't the other half, the part you'd expect an APD kid to fail. So again, where is the SLP in this? Op shouldn't have to drive and spend so much. The SLP ought to be running more testing.

[Storygirl]

And :grouphug: for your rough day!

 

Your daughter may have a good visual memory, which is why she could place the items on the correct letters, without being able to name the letters. Because she could remember seeing the item on that spot previously.

 

DD12 was always awesome at concentration type games and things like jigsaw puzzles. People with dyslexia often have visual-spatial strengths, and are sometimes considered visual spatial learners.

 

[PeterPan]

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. 

[Storygirl]

I think it would take the younger normed CTOPP for a 5 yo. The psych may not have had it.

 

Ah ha. I forgot she is five.

[PeterPan]

. The additional signs of APD (mishearing words, the alphabet thing, asking "what?" ALL THE TIME, inability to rhyme, etc) make me lean towards a misdiagnosis. 

 

 

Those aren't. My dd had most of that, and she has ADHD with borderline APD and word retrieval issues. The rhyming thing, that's phonological processing. The asking what is attention. Their mind is somewhere else. Mishearing, same gig. They weren't attending. 

 

You've got to look at what symptoms differentiate APD from all the rest, not the ones that are the same. Extreme difficulty in background noise is really specific. That's the one you want to figure out. 

[PeterPan]

Yeah, it took me a long time to notice this stuff, like them saying oh that's not what I use or this is what we'll do, when what they really mean is I don't want to spend another $350 to get some obscure test for your kid's issue to have the right tool.