Neuropsych testing and cooperation

[akafred]

So... I found a neuropsych who is supposedly a magician a few hours away. He has a reputation for really getting challenging kids to cooperate and really finding good info in complex kids. I sent him the eval from last year and paid for an hour of his time to review and phone consult. None of it is particularly new info and keeping in mind he has never met my child:

1) He said he almost never starts this sort of thing talking about meds but it was obviously something we have had challenges around. He would definitely not want to see her until her meds were as balanced as possible. He is not a psychiatrist of course.

2) Her previous scores average to an average IQ, but there is a lot of variability in her results, and based on that, the developmental and anecdotal history as well as the song of hers he listened to online, and the observations regarding behavior that the previous examiner noted (and how obviously anxious she was during testing that would affect results), he believes that number to be quite low. I am aware he could be trying to flatter me, but truthfully he pretty much talked me out of seeing him (more later). But he agreed with the previous examiner that this should not be shown to a public school because they will say, "She has an average IQ and is performing average. Done!"

3) He disagreed with the previous examiner in that he thinks, even given how young DD was at testing, that there are a number of warning signs of dyslexia. He said this with regard to my answers to his questions (things like how she skips small words, has an easier time reading large words than small, frequent substitutions) and the variability in the reading subtests (from 16th percentile in 2 areas to average and including 75th percentile in one area), as well as spelling and the particular types of spelling mistakes (omitting vowels).

IF I go forward getting her another full eval, ideally I would want him to do it. The positives are that he is a magician with challenging kids, and he bills hourly so if it really isn't working he isn't going to try to force it. The negative is it is 3.5 hours away, so we would have to take several days off work/school, stay in a hotel (which would drive its own anxieties and challenges), and cost a fair bit extra. His fees are 10% higher than at home plus the cost of a vacation. I got ZERO pressure from him in trying to get me to come see him. He said he would be happy to see her, but he did not push it. He definitely wants to wait until she's in a good place with medication balancing, low anxiety, high resilience. But he also said we don't need to wait for an eval to move forward on dyslexia treatment.

After talking to him I'm not sure what another full eval would bring to the table. Yes he *might* be able to tell us a more realistic IQ number or a better picture of strengths and weaknesses if he gets her to really focus. But having a number and possible confirmation of the "2" part of "2e" isn't the end goal for me. He should be able to definitively say if she has dyslexia or not. But I already have strong suspicions. Remediation with intensive tutoring can move forward even without specific confirmation of diagnosis. My understanding is most of the tutoring programs will do some kind of reading-specific evaluation of areas of weakness anyway, right?

[waverly]

I thought auntie had said the Ortin Gillngham program tests for dyslexia. I could be wrong, but it would make sense if they did.

[akafred]

Nov 16, 2017 8:59:32 GMT -5 waverly said:

I thought auntie had said the Ortin Gillngham program tests for dyslexia. I could be wrong, but it would make sense if they did.

My understanding is they test for strengths and weaknesses to figure out where to focus and track improvement, but they don't specifically label it Dyslexia. Same for LMB.

[auntie]

Generally speaking, it is difficult to get a dyslexia dx unless and MD is involved. It is considered a "medical" dx. DS's Orton program tested for dyslexia- along with a whole host of other things- at the clinic branch of their facility and the testing reports were signed off by a neurologist.

It's one of the reasons I often suggest checking out a pediatric teaching hospital.

[akafred]

Nov 21, 2017 6:16:17 GMT -5 auntie said:

Generally speaking, it is difficult to get a dyslexia dx unless and MD is involved. It is considered a "medical" dx. DS's Orton program tested for dyslexia- along with a whole host of other things- at the clinic branch of their facility and the testing reports were signed off by a neurologist.

It's one of the reasons I often suggest checking out a pediatric teaching hospital.

But what benefit is there to a dyslexia presentation? As opposed to just starting an OG or LMB program?

[auntie]

Nov 21, 2017 9:58:14 GMT -5 akafred said:

Nov 21, 2017 6:16:17 GMT -5 auntie said:

Generally speaking, it is difficult to get a dyslexia dx unless and MD is involved. It is considered a "medical" dx. DS's Orton program tested for dyslexia- along with a whole host of other things- at the clinic branch of their facility and the testing reports were signed off by a neurologist.

It's one of the reasons I often suggest checking out a pediatric teaching hospital.

But what benefit is there to a dyslexia presentation? As opposed to just starting an OG or LMB program?

You mean any benefit to a dyslexia diagnosis? 

I can think of several. For one thing, remediation of a true learning disability can be counted as a medical expense on your taxes. With these programs running upwards of $30K a year, being able to deduction tuition and mileage can make it doable for more families. 

It is a whole lot easier to advocate for differentiated instruction or services with a public school when you have an actual medical diagnosis to back you up- especially when that diagnosis is on the letterhead of one of the best pediatric hospitals in the world. 

The diagnostic process will rule out other conditions that could lead to academic difficulties. DS had a classmate whose reading issues were more related to working memory- he could learn to read/do math but he didn't retain it day to day. Sometimes an evaluation will uncover a much lower than expected IQ or attention issues. 

The evaluation will- hopefully- tease out where the disconnect is. Especially for LB which has a range of products available. If a child has a phonemic awareness issue, OG might be the way to go. BUt if you're looking more at comprehension, LB's V&V would be a better choice. Sometimes kids start with a decoding program and move onto V&V once they're strong decoding. 

[akafred]

Thanks, auntie. My problem, though, is that she will almost certainly not test accurately. IDK how useful the results will be. The cost of the eval will be several thousand if we travel. We would probably have better success if we did some kind of targeted dyslexia specific test that would maybe last a couple of hours (optimistically) vs the full neuropsych exam that would be a full day. She does not have the stamina to sustain that kind of testing. At this time the public school argument does not apply.