I think you need to follow up with your insurance re
neurospych testng. We have terrible insurance and would have only a copayment at Childrens or kki (these arethe ont
two places that would take our insurance). The wait at kki
is sinificantly shorter.

Anonymous wrote:Okay, given the level of intense frustration vs. effort put in, I think you should do some testing. There could be a problem behind this that he just can't solve on his own -- dyslexia, a vision issue, a neurological issue. What about Kennedy Krieger?

I agree that you're probably best served by additional testing There are some studies at KK and NIH that you might be interested in. I didn't see any that specifically tested for LD but they may be worth a call to find out. We participate in some at NIH (ADHD and anxiety) and have found them immensely helpful and informative. We're doing one with anxiety now and after testing, they offered treatment for a while afterwards (medication and/or CBT). My 8 yo has signficant anxiety, particularly in anticipation of things - like the start of school. Last year was horrific and your battle with homework/testing also sounds very, very familiar. DS has been on low doses of generic Prozac for about 2 months and it's made an incredible difference. The researchers told me that a number of kids they've seen that were previously diagnose with ADHD actually have anxiety. Once the anxiety was under control, so did their ADHD symptoms (my DS's have not).

http://lnir.kennedykrieger.org/studies.html

http://www.clinicaltrials.gov/show/NCT00018057

Anonymous wrote:15:48 - OP here. Yes, we did get the C-TOPP as well, and his scores well average to high average, except on rapid naming, which were below average. The school psychiatrist thought the rapid naming below avg was because he got stressed out when she instructed him to do it quickly (ED/anxiety), whereas the SpEd teacher thought it could be a processing problem (LD) because it wasn't the type of activity to stress him out.

But it didn't matter because it wasn't bad enough in that area to count as an issue, it was just noted as a relative weakness.

it's good to hear that the special ed services have helped with the reading, I'm hopeful that will be the case for us as well.

My aunt got us all freaked out, saying that you get different services based on the label, and with ED we wouldn't get as much reading support (which is what we need the most, imo). So i'm really hopeful that she's wrong, and we don't just get emotional/psych help, because that's not the total of his issues.

Some of the Arlington schools are really proactive. The ED label might also provide some useful counseling services for your DS as well, and perhaps certain testing accomodations. It is hard to know what to ask for and I hope DS' school has good staff/special ed teachers - good ones are proactive and will help guide you. Good luck!

15:48 - OP here. Yes, we did get the C-TOPP as well, and his scores well average to high average, except on rapid naming, which were below average. The school psychiatrist thought the rapid naming below avg was because he got stressed out when she instructed him to do it quickly (ED/anxiety), whereas the SpEd teacher thought it could be a processing problem (LD) because it wasn't the type of activity to stress him out.

But it didn't matter because it wasn't bad enough in that area to count as an issue, it was just noted as a relative weakness.

it's good to hear that the special ed services have helped with the reading, I'm hopeful that will be the case for us as well.

My aunt got us all freaked out, saying that you get different services based on the label, and with ED we wouldn't get as much reading support (which is what we need the most, imo). So i'm really hopeful that she's wrong, and we don't just get emotional/psych help, because that's not the total of his issues.

(OP here) Yeah, I think that's where we're at - needing the more testing. I'm hoping, and I know this is basically a pipe dream, that when we see the ped she's going to have some magic way of calling the testing medically necessary so we don't have to pay out of pocket. I called KKI a few weeks ago and, man, that's some pricey stuff. We can find the money for it, and that's what we'll do if the ped doesn't have a magic wand to wave, but I'm hoping that she does... In the meantime, I don't have a clue what to tell the school I want - it feels like they're already doing some helping with the reading without the IEP, so why are we giving DS any label unless there's something more for them to do?

If the school uses the label as a means to get him services for reading, great. As others have suggested, there could be any number of issues going on. Did the school give him the C-TOPP test?

DS, also in Arlington, has an IEP for OHI (ADHD in his case) and was way behind in reading. We asked for testing for reading disability last year and they gave him the C-TOPP. He actually tested average to, in a couple of cases, superior. Special ed services have helped a great deal.

DS also has anxiety - his IEP has not addressed that so far, although we are trying to do so. Good luck!

BTW, that was 15:23 again.

Okay, given the level of intense frustration vs. effort put in, I think you should do some testing. There could be a problem behind this that he just can't solve on his own -- dyslexia, a vision issue, a neurological issue. What about Kennedy Krieger?

OP here. 15:23 - thanks for the understanding (she really FEELS like Aunt Hectora) and the suggestions. We've had DS working with a private reading tutor for over a year, he's been in reading pull out at school since the middle of Kindergarten (it's now second grade) and this year he got put in a special morning reading group that meets every day for an hour before school starts with the SpEd teacher (the group is half kids with IEP's, half without but with reading troubles) so we're working on the extra reading help. We've tried everything from "book buddies" with the local highschool basketball players who act as mentors, to reading for prizes, to playing silly mnemonic games with letters and words. Somehow it doesn't work, there's just a disconnect. One day he seems ok with sight words, the next day, he can't tell "that" from "they" from "the" from "this".

It's like he looks at the first letter and then stops trying because he's frustrated that he doesn't just "know". Then he cries, says he's stupid (his word), bangs his head on the table or pulls on his hair, and refuses to continue. All over the difference between was/where/went.

Given all the reading help he's gotten and is still getting, it seems like there's something other than "just not reading" going on.

Beyond getting some other neuro tests done (on my agenda), I don't know what to ask the school to do or to help with.

The problem is your obviously very bright child can't read well and they need a hat to hang services on. He's a bit anxious so they are going with ED. The real question is coming up with good, practical long-term strategies to get him going with reading. I would ignore Aunt Hectora and her chorus of miserables. Ditto the ADHD doesn't sound on point at all.

Is it possible to get him a reading tutor privately and get him a fun success experience with reading? Kind of disengage the anxiety/reading hook-up and see if the anxiety issues flare down a little?

I have seen posts on this forum for reading tutors, maybe you can do a search.

So, we had our eligibility meeting last week for my 7.5 year old in Arlington County. DS is 7.5, and barely reads - cat in the hat level basically, but no one seems able to tell us why. DS's percentiles for reading and writing are all low to low average, his math is average to high average. He was given the Kaufman something (KABC-II) to test for cognitive functioning and scored very high - all 92-99 percentiles except on long term memory, which they termed a "relative weakness" although he did score average at 42nd percentile. He did fine on visual motor development (where we expected to see problems) and absolutely tanked on oral reading development, getting a "poor" categorization and a 5th percentile.

They qualified him as an "emotional disability" based on the fact that he has some significant anxiety issues, can panic when tested, and sometimes acts depressed. I'm not entirely sure ED is a better classification than LD, as I don't think it's the anxiety that's leading him to not read, I think it's the not reading that's leading to the anxiety. However, the school team insisted that he'd done "too well" on the other tests to make them think learning disability, and they knew anxiety was an issue, so it was take it or leave it.

We want him to get services, so we took it. Now my aunt (a former principal of a SpEd school) is telling my mom that we're idiots because he's not an ED kid and we don't want to be classified as one (why not? Will he grow horns? I mean come on, anyone who can see the label has to read the file, they'll find out that he's not torturing animals or setting fires, he's stressed out) and that we should've argued for an OHI classification based on his borderline ADHD behavior (note - ADHD has never been diagnosed by our pediatrician or any medical professional, and the school notes are based on DS's first grade teacher, who also told our therapist she "didn't feel he was very bright" and now we've got cognitive scores to prove her wrong, so what does she know... also my husband and I feel that the anxiety issues are way more pronounced than any ADHD type issues.)

To wrap up my long winded intro and get to my questions:

(1) Does the label really matter? Is it worth us appealing? Will the label mean we get different services because of the label, or does the school just have to give whatever services are necessary regardless of label?

and

2) I have no idea what the universe of service options are. Is there something that I should be thinking about or pushing for when we do go to have our IEP meeting?

FWIW, we've also scheduled a meeting with our pediatrician to discuss all of this, but I thought I'd check in here as well for some real life suggestions...

TIA