Trouble identifying a learning disability

[happymainemom]

Hello friends!  I'm not sure I'm posting on the right board, as I haven't been here to the site in a few years.  I hope you might be able to point me in a good direction.

 

Long story short:  After years of struggling with mostly reading comprehension and math, we had my daughter (13 8th grade) do extensive testing with a private, very highly regarded doctor.  The result was an average IQ and a few minor things but mostly ADHD.  This was a SHOCK to us because she, even being a girl, does not exhibit typical ADHD behavior at all.  She is not inattentive to her work, people, situations, etc.  She is not a daydreamer.  She doesn't sit and stare out the window.  She is very social, reads social cues well, has tons of friends.  I could go on and on. 

 

I told the doctor, "but she doesn't get distracted by anything.  I watch her read and focus.  She is trying hard to understand her work and not miss anything."  He says, "yes, SHE is paying attention but her BRAIN is not attending to the information.  She has great coping skills!"  Hmmmm.....okay.

 

So, fast forward to now.  We agreed to try medications because we have tried everything else. Curriculums, learning styles and methods, different ways of testing/presenting info, blah blah blah.  We use every study method we can, but much of it just create more work for her.  Notes, highlighting, audio, visual, adding movement, flashcards, games, drills.   We spent 3 months with Strattera.  No change.  We have now spent 2 months with increasing doses of methylphenidates.  No change except she's grumpy as hell.  But here is what I have figured out about how she is processing information and here is where I need some input as to what this may be:

 

• She has a weak working memory.  and it seems to be limited to what she READS.
• She has very weak reading comprehension.
•      *Unless the answer is specifically in the paragraph, she has trouble finding it.
•      *Even if the answer IS specifically there she may read it over and over, even aloud, and never find it.
•      *If the wording is changed, she won't connect the meaning...even though her vocabulary is good and she understand what the words mean.
•      *She has a terrible time finding the deeper meaning.  It is agony and torture for her.  Only in what she reads.
•      *She cannot "read between the lines".  Only with things she reads.
•      *She constantly reads directions wrong and misses key information on what she is supposed to do, how its done, when it's due, etc.  That sounds ADHD like.
• She cannot skim a page to seek out bold or keywords.  She says she tries but it never works for her.
• She has never "eliminated choices" on a multiple choice test.  For example:  When asked about the colonial settlements, you may quickly rule out Canada and Washington state, leaving you with two choices.  She can't do that.  Never had even thought of it.  She sees it as a whole, get's overwhelmed and can't rummage through her information to make a good choice.
• She can pretty much forget a whole book.  She just read Watership Down.  REALLY read it.  I witnessed it happen.  She remembers almost nothing from the book.  She will be failing her essay that is due because you can't write the essay when you don't remember what you read.  She can't even fake her way through it. lol  :001_rolleyes:

 

These things are only slightly improved listening to an audiobook/mp3. 

 

This has been going on for years, but now that she is in higher grades it is REALLY showing its head.  Its so bad and we never thought it was going to get this hard for her.  She studies and studies and studies.....and fails tests.  She reads and reads and reads.....and has no insight into the story and is unable to meaningfully answer questions regarding it. 

 

There has GOT TO BE some piece that we are all missing.  I am desperate for her.  And this medication thing seems to be a joke....my older son was on medication during his school years and it was a miracle for him.

 

I have been homeschooling for 14 years.  I like to think I kind of know what I'm doing.  This is throwing me way out of my league!

 

Does this sound like any type of LD that I have never heard of? 

 

Thank you for any help you give.  If nothing else, I have been able to write this down to send to her doctor and maybe get somewhere with him. 

 

Lisa

[Serenade]

I wonder if she has some sort of dyslexia?   Has she been tested for that?  

[Lots of boys]

When you had her tested, what was her working memory scores. Specifically if they did any delayed memory work? It sounds like this could be a combination of a few things but definitely if her working memory is really low, most of what you mention above would be really difficult.

[geodob]

Hi Lisa,

 

What I would like to raise with you, is something called "Self-talk'  ?

 

As you read this, you are no doubt hearing the words in your mind, without saying them out loud.

But then you might consider what reading would be like.  If as you read, that you didn't hear the words in your mind?

How much sense would you be able to make of what you read?

 

But after you read that, you might have thought about it?

Where to think about it, you would have talked it through in your mind?

 

Then if you write a reply to this?  As you go to write each sentence, you will probably talk through and form the sentence in your mind. That you are about to write?

 

Though you then might consider the effect that it would have on your reading and writing?  If you didn't hear the words in your mind as you read?  Or had to write without being able to rehearse and form each sentence in your mind?

Also with tests, being able to talk through different options in your mind?  To arrive at an answer.

 

Where if you consider this in relation to your daughters difficulties?

You might see how this could provide an explanation?

 

 

 

[kbutton]

The types of reading comprehension problems she has sound like non-verbal learning disorder in my very not professional opinion. I read a lot about it at one point because it has features in common with my son's diagnosis, and I think we have an extended family member with NLD (that person has trouble with reading comprehension, following the plot of a movie, etc.). The reading comprehension problem while being able to read fluently is one of it's features--processing higher level information is difficult with NLD, as I understand it. I don't know how many characteristics a person has to have to be diagnosed, but one big feature is that verbal IQ is significantly higher than visual and spatial abilities. I think you would compare VCI scores to PRI scores from the WISC to see if they are significantly different. If that is not true, but some features fit, you might find good strategies to try anyway since reading comprehension is part of what NLD interferes with.

 

You might search both NLD and NVLD as both abbreviations are used.

 

To rule out developmental vision problems that a regular optometrist doesn't necessarily test for, you might want to have her examined by a COVD optometrist.

 

She sounds like a really hard worker--I hope you find something helpful soon. Your observations will be helpful to you at some point, even if this doctor is not sure what to do with them.

[PeterPan]

Lisa, what were her scores on performance and verbal IQ?  It's possible to get an adhd label and have it be CAPD, and it *should* show up with a discrepancy between performance and verbal IQ.  You've got some comprehension issues that you need to work on.  After you eliminate the APD possibility, then you could look into an SLP eval.  They do more than just speech.  We just had someone on the boards here who took her dd to an SLP for an eval because of reading comprehension and they got a very detailed eval to dig in on the language issues.

 

Here's the catch though.  Right now you're in shock (1) and operating on some huge misassumptions about adhd (2).  So before you do any expensive evals you might need a bit of time to process.  As you say, girl adhd looks NOTHING like what you thought adhd would look like.  In fact, if you read the other thread Tiramisu started, you have practitioners saying adhd doesn't even EXIST.  Well fine, but something is happening.  SOMETHING is happening when a kid has these symptoms, kwim?  Meds should change her ability to stay with something and process, but they don't improve EF issues (executive function) or solve processing problems.  

 

What you might want to do is dig in and figure out whether she has trouble with ALL comprehension of written material or ONLY the material you hand her.  What were her reading comprehension scores like?  Did he run a WIAT or something to give you some grade level scores?  Did he run a CTOPP to eliminate dyslexia concerns?  What tests did he run?  Even some very good psychs only run say 2 hours of tests, and others will do 6 hours or more.  More time, more tests, more info.  Dig in and see what he ran and what those scores were.  

 

If she picks up a book she likes, does she comprehend it?  I'm asking, because I remember this really horrible scene before we went to the psych for our evals where I handed dd this PH physical science text (not stellar, a very basic level course) and asked her to read the page and tell me the steps of the lab or answer basic questions and the dc COULD NOT.  I'm telling you flat COULD NOT.  But when you test her with the psych, her reading comprehension is age 30+, off the charts!!!!!!!!!!!!!!!!!!!!!!!!!!!  Ding, ding.  Attending means the brain is there, processing, turned on, giving a rip.  If the brain doesn't give a rip, it just turns off, sorry.  Change materials, and you change the whole situation.

 

I want you to have the right diagnosis and you want the right diagnosis.  If there were NVLD, the psych SHOULD have caught it.  I'm not saying it's not there, just saying he should have caught it.  It's part of the spectrum, and my understanding is finger agnosia is a discriminating symptom of it, meaning if you have no finger agnosia, I'd be surprised if that's the label.  Everything you're describing COULD be described by adhd.  The thing I'd be looking for beyond that would be APD and whether there are actual reading comprehension or language understanding issues to warrant referral to an SLP.  If there's no discrepancy between the performance and verbal IQ, no language comprehension issues, I'd probably accept the adhd label and just start coming to grips with it, sorry.  

 

:grouphug: 

 

I'm very sorry, because I know it's an ugly, nasty label full of preconceptions and social biases that DOESN'T make sense and doesn't describe our kids.  Use it as a starting point.  It *is* possible to need extra work on comprehension, and there are materials for that.  Come to the LC section and search or start a thread.  I know kbutton was just posting some stuff.  

[kbutton]

I want you to have the right diagnosis and you want the right diagnosis.  If there were NVLD, the psych SHOULD have caught it.  I'm not saying it's not there, just saying he should have caught it.  It's part of the spectrum, and my understanding is finger agnosia is a discriminating symptom of it, meaning if you have no finger agnosia, I'd be surprised if that's the label.  

 

Not all experts look for NLD--it's not given much attention in some circles. It's also debated whether it's part of the spectrum or not--some people diagnose them separately, and some people are diagnosed with both as separate things. Not to argue, but to point out that some docs wouldn't consider it because of their personal views on it.

 

What kind of discrepancy do you see with verbal or performance IQ with CAPD? Is it typical or just a possible flag? I'm asking because I think you're going to say that the performance should be higher than verbal because they aren't getting the verbal information. My younger son bombed his CAPD screening, but his performance IQ is in the basement, and his verbal IQ is in the clouds somewhere. However, across the board, he did poorly on tasks that required him to follow verbal instructions but well on tasks where he could easily see what was required of him.

 

[happymainemom]

You all are being very helpful, thank you.  I am going to try and respond in depth this weekend.  I just had a long email discussion with her online literature teacher and, after chasing after twin 4 year olds, one of whom has ASD, and an 8 month old, I'm simply BEAT.  Everyday, actually!

 

The "self talk" does make sense.  she doesn't do that.

 

no dyslexia.

 

I'm not in shock now, this was last summer.  She doesn't have a problem staying with something, or staying on task.  Not at all.  Processing it?  Yes.  We have been doing meds since august and they aren't helping anything.  Boooo.

 

More later. I'm tired and falling asleep. 

 

Thank you all, I will respond!

 

Lisa

[PeterPan]

Not all experts look for NLD--it's not given much attention in some circles. It's also debated whether it's part of the spectrum or not--some people diagnose them separately, and some people are diagnosed with both as separate things. Not to argue, but to point out that some docs wouldn't consider it because of their personal views on it.

 

What kind of discrepancy do you see with verbal or performance IQ with CAPD? Is it typical or just a possible flag? I'm asking because I think you're going to say that the performance should be higher than verbal because they aren't getting the verbal information. My younger son bombed his CAPD screening, but his performance IQ is in the basement, and his verbal IQ is in the clouds somewhere. However, across the board, he did poorly on tasks that required him to follow verbal instructions but well on tasks where he could easily see what was required of him.

 

Well the only thing I'll add to that is that there are stats floating around about the percentage of kids labeled adhd who will go on to get a CAPD label if you eval.  When I called around to learn more about this, the big place in town basically doesn't want you until you've had the full psych AND the SLP eval AND filled out their intake/screening paper work.  I'm assuming that varies with the practice.  So I'm all in favor of more evals and the op sorting through.  Yes, the audiologist I talked with said in general they expect to see a discrepancy between verbal and performance.  You seem to have such a WIDE discrepancy, even though of an unusual kind, that you still caught it, kwim?  In our case the scores were pretty close, with the verbal maybe 1-2 ahead, nothing major.  Even though my dd does some of the things that would make you think APD (covering her ears, trouble with understanding the audio tracks for her spanish assignments, etc.), we've concluded that the other component problems explained it (sensory, low processing speed).  We COULD be all wet on that, and unless I get more evals (see more money flying out the window), we won't know, kwim?  So I'm definitely interested in the thought of people being able to determine accurately whether they need to pursue those. 

[PeterPan]

You all are being very helpful, thank you.  I am going to try and respond in depth this weekend.  I just had a long email discussion with her online literature teacher and, after chasing after twin 4 year olds, one of whom has ASD, and an 8 month old, I'm simply BEAT.  Everyday, actually!

 

The "self talk" does make sense.  she doesn't do that.

 

no dyslexia.

 

I'm not in shock now, this was last summer.  She doesn't have a problem staying with something, or staying on task.  Not at all.  Processing it?  Yes.  We have been doing meds since august and they aren't helping anything.  Boooo.

 

More later. I'm tired and falling asleep. 

 

Thank you all, I will respond!

 

Lisa

Wow, then definitely follow through.  You would NOT be the first to get an adhd label and find out it's something else.  Tiramisu and FairProspects have had posts about proper testing.  You need a place that can do the full, isolated booth eval.  You may have to travel or find a children's hospital in a large city or a large practice.  If you call them, they may want other things first.  Like I said, the place I called wanted the SLP eval and the psych eval and wouldn't even consider an appt without getting both of those first.  They may have an SLP they like for those evals, so that would be further info for you.  

 

Keep us posted on how it goes.  :)

[ElizabethB]

Does she have the same comprehension problems when a story is read to her?

 

I would give her the MWIA and the New Elizabethian test to rule out a phonics problem, some of my remedial students had been thought to have a reading comprehension problem but actually had not learned all the phonics they needed to know to read every word accurately, they would guess at occasional words, causing comprehension problems.

 

http://www.thephonicspage.org/On%20Reading/readinggradeleve.html