Three questions - help - long

[lmh2402]

I apologize in advance if this is rambling. Ultimately, i think I need help with three questions but will provide backstory to get there.

DS - born Apr 09. always been quirky. and difficult. like really. really. REALLY difficult. have been trying to figure out what's "going on" since he was 11 months old. without tracing all of the many specialists we've seen and therapies we've tried, bottom line is that it's clear he had - and still has - sensory issues. we did intense OT and ST (for feeding purposes b/c of gagging) for several years and he was "discharged" I think two years ago when the therapists felt he was basically "ok" and not much more could be done for him. He definitely is much better in this regard than he had been, but certainly not 100%. very noise sensitive. can't tolerate wet clothing. can barely be able to be out of the water in a wet bathing suit b/c of the way it feels on his skin, etc, etc

In addition to sensory issues, he's been dx with fairly extreme generalized anxiety, separation anxiety and OCD. he's medicated with zoloft and extended release clonidine.

He's been tested by a person in the city a couple of years ago to see if he fit on the spectrum b/c he's got a lot of perseverative behaviors and other things that seemed/felt autistic. psychologist sent us to this specialist that did a bunch of testing and end result was that he's got "a lot of unexplained red flags" but does not fit criteria for autistic dx. he also tested gifted at this time.

Throughout all of this time, since he could speak, one of our biggest issues was perseveration. when he was a toddler and he would get upset, the ONLY thing that would calm him was writing the alphabet over and over and over again - me, not him. he would sit and stare. or drawing octagons over and over again. as he aged, he would start saying the same things over and over again. this morphed into asking the same question over and over. and over. and over again.

this persistence in asking a question -though it's been asked and answered several times already - has been going on for so long I don't even remember when it started. I remember discussing with his OTs and they put in place a three time rule - he could ask three times and I'd answer but after that I wouldn't answer. but this didn't stop the questions and often ended in tantrums.

the issue still continues to this day and i've discussed it with his currently psychologist and psychiatrist and neither has been sure of anything.

On top of this, we've also been playing with the idea that he's got ADHD. DS has a hum of energy that you can literally feel coming off of him. everything he does, he does in EXCESS. he's excessively loud (though he's extremely noise sensitive!), he never, ever stops talking. he talks over people. he blurts. he is unable to wait for others to speak or do something if he's ready to speak (which is always) or do something. we had some problems in school this spring - the teacher was awesome and immediately contacted me and the psychologist to let us know that she was seeing some impulsivity issues. the psychologist went in for a school visit and said that while she didn't see non-stop getting out his seat, she did see that he was literally almost vibrating with something pent up. he didn't stop rubbing his lips, or tapping his legs, etc. she said to the psychiatrist that she felt we were possibly looking at ADHD.

But again, no one was sure b/c some of this could also be blamed on the anxiety, etc.

Fast forward to this summer - we get a letter in the mail providing the results of DS' standardized test that all the kids in district take - the PTCS (Primary Test of Cognitive Skills). Last summer we got his results from taking in K. There are four categories - Spacial, Memory, Concepts, Verbal. Last year he got 99% on everything except Memory. In Memory he got a 56. I was confused b/c his commonplace memory is crazy - kid will tell me what I was wearing on 4th of July three years ago, or what the score was of some random baseball game last season...and who got each of the hits. But I shrugged and figured maybe a fluke and who really cares.

This year's test results come- 99s again on everything except Memory. This year he gets a 21 in Memory. Now I'm concerned. What's going on?!

Is this a processing thing? Is this somehow related to what I keep wondering is maybe his inability to process like the repeated questions and answers over and over again?

I ask the principal if he can tell me about the test/show me the test. I want to know what exactly is being tested to get the memory score. he says no.

If you've gotten this far.... thank you. I know it's sooo long.

But bottom line:
1. shouldn't I have a right as a parent to understand the specifics of this test, b/c it seems clear to me that there is something going on and that this test is basically putting up a red flag. Principal basically brushed it off said it wasn't a big deal and test didn't count for anything in the long run. but that's not the point. the point is that if it can give me some info on something DS might be struggling with, I'd like that info so I can do something about it.

2. does anyone have any thoughts or experience with this test? I googled quickly but got very little info and DS' psychologist wasn't very familiar with it either.

3. does anyone have any thoughts on what kinds of issues I might want to explore given this weird "memory" test result thing? and, might this be related to the questions. over and over again.

example of the repeated questions from just last night:
1. yesterday evening after soccer practice his friend's mom dropped him off and got out of the car to chat for a few minutes. it was around 7:30pm at the time. she was mentioning that she had already seen mums out in garden displays - "wow, fall is really close." he was so hung up on this - he kept obsessively asking what mums were. interrupting over and over again. the other mom and i both kept saying they were fall flowers but he just couldn't seem to get it. kept asking questions like, "are they here at our house? are they at your house? where did you see them? why are they out?" and on and on.


2. after we went inside and he took a shower, he sat down to eat some dinner. I was sitting with him and we started talking about something, which I cannot remember the specifics of right now. All that I definitely remember was that the conversation was more of a story I was telling him that had "two steps" meaning that first someone did something, and then another person asked the first person a question about what they had done. I was simply making conversation telling DS about this - I wish I could remember the specifics right now, but I can't. Anyway, he was so confused/caught up in this - what should have been a sort of "nothing" chit-chat turned into five minutes of questions and trying to understand the sequence and me having to repeat over and over.

These kinds of things happen over and over again. He's so, so bright and yet he often seems unable to grasp things when spoken to him.

Thanks to anyone who can get through this and give me some thoughts.

[abh5e8]

Hugs. It sounds incredibly tough. I have a friend with a son, with deficits in working memory and he has many of the same struggles you describe. It's like his brain has problems taking new info and creating memories with it, hence the repeated questions. Hopefully his psychologist can help? More testing or some skill work?

[westwoodmom04]

Have you ever taken him to CHOP to be evaluated?

[HannaAddict]

The memory they test on these sorts of tests isn't like everyday what you were wearing or facts. It is different and someone on here could explain it. The public schools aren't really set up to explain in great detail but I would take his results to a private psych who does testing and interprets and discuss the testing that has been done and think about what testing you may want to pursue privately. I have heard that lower working memory and/or processing scores can be indicative of ADHD and I'm sure others on this board can give more detailed info on this. The questions sound like you might want to possibly look at ASD things as well. Good luck, I would ask for referrals from other parents for educational testing and go from there.


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[Melbel]

As mentioned in prior threads, your son's presentation (sensory sensitivity, memory deficits, ASDish behavior, ADHDish behavior) is highly suggestive of Lyme Disease. I moderate a parents group with thousands, and have seen a similar presentation and recovery many times. Standard testing for Lyme misses 1/2 of actual cases so it is critical to see a doctor that has received specialized training. I recommend finding a reputable ILADS trained physician. Dr. Gedroic is in your area. Symptom list and hyperlinks to resources (green words) can be found here: http://lymediseasechallenge.org/childhoods-new-normal/

To better explore the memory issues, I recommend neuropsychiatric testing. This testing will help identify deficits and possible therapy, but will not identify the root cause.

I continue to keep your family in my thoughts and prayers.

[BunnyBee]

Schools don't test for diagnosis. Mass standardized tests aren't designed or intended to diagnose complicated issues. You have a right to a copy of the test results, but they don't have to explain them to you or figure out what they mean. Unless the principal also has a degree in neuropsychology or ed psych, I would bet she doesn't fully understand the implications of the testing.

Look up working memory and executive function.

Agreeing with everyone else re: neuropsych. A child we know well with some similar-sounding behaviors has been diagnosed with a few things (HFA, bipolar, ADHD) at different times/ages where some issues are more prominent than others. One expert thinks one's more likely, others say it's a combo. There's a great deal of overlap and co-morbidity with these conditions. Also OCD and ODD, though I don't think your DS has flags for ODD.

[hillview]

Neuropsych. My DS1 has low working memory and low processing speed -- he can't remember the last 7 digits or what I just asked him to do (go put on socks and unpack your backpack). He can remember a ton of details about the WWII books he's read or what the inning by inning score of the game we went to see was. Different types of memory behave differently (and test differently).

[lmh2402]

Schools don't test for diagnosis. Mass standardized tests aren't designed or intended to diagnose complicated issues. You have a right to a copy of the test results, but they don't have to explain them to you or figure out what they mean. Unless the principal also has a degree in neuropsychology or ed psych, I would bet she doesn't fully understand the implications of the testing.

Look up working memory and executive function.

Agreeing with everyone else re: neuropsych. A child we know well with some similar-sounding behaviors has been diagnosed with a few things (HFA, bipolar, ADHD) at different times/ages where some issues are more prominent than others. One expert thinks one's more likely, others say it's a combo. There's a great deal of overlap and co-morbidity with these conditions. Also OCD and ODD, though I don't think your DS has flags for ODD.

thanks, everyone. I've sent notes to our psychologist and psychiatrist to start the conversation about neuropsych testing

but if I don't want/need the principal to understand the test implications...I just want them to give it to me so that I can share it with my experts...shouldn't that be a given?

[PZMommy]

thanks, everyone. I've sent notes to our psychologist and psychiatrist to start the conversation about neuropsych testing

but if I don't want/need the principal to understand the test implications...I just want them to give it to me so that I can share it with my experts...shouldn't that be a given?

You want an actual copy of the test? Those tests (and all the state tests) are considered a high security item. They are kept under lock and key, and even as a teacher we are not allowed to read the actual test. We see the results and that is it. They don't want people "studying" for the test so to speak.

[123LuckyMom]

thanks, everyone. I've sent notes to our psychologist and psychiatrist to start the conversation about neuropsych testing

but if I don't want/need the principal to understand the test implications...I just want them to give it to me so that I can share it with my experts...shouldn't that be a given?

Unfortunately, you cannot get a copy of the test, but it really is not important. A neuropsych evaluation will use different tests, will uncover any processing disorders, and will provide a diagnosis. When you first meet with the psychologist, you can mention the behaviors that are giving you concern and also the oddly low scores on the standardized testing. Having that test isn't necessary for evaluative purposes, though. I promise you're not being hampered in getting help for your DS by not having a copy of that test.


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