Sdel Posted January 7, 2016 Share Posted January 7, 2016 Okay, finally got my DD's psych testing results. The evaluator, who couldn't recommend meds, only recommended meds 7 times. She also pretty much presented meds as the magic bullet that would fix all the problems. Any time I asked a question not related to ADHD she pretty much purposefully misinterpreted the question and turned it back to ADHD. For example, I asked her if she had an opinion of Cogmed for working memory as an evaluator and she started talking about meds and neurotransmitters. She characterized DD has having severe ADHD. That said, I have some questions about the scores. Please don't quote the scores as I may delete later. WISC -IV Verbal Comp - 124 - Superior Perceptual Reasoning - 100 - average WM - 88 - low average PS - 97 - average Full scale - 105 - average Wiat - III Early reading - 56 Math problem solving - 82 Word reading - 106 Numerical operation - 84 Oral expression - 131 Oral reading fluency - 80 Spelling - 81 Math fluency - add - 96 Math fluency - sub - 102 Mathematics - 82 Math fluency - 100 Based on all the questionnaires, scored in the 90s for ADHD symptoms. The special notation was that her performances on the subtests were highly variable and could mean the processing speed could be misrepresented. On the Wiat- III about half of her actual scores were 20 points lower than the expected. Some examples: Symbol search - 13; coding - 6 Digit span - 11; letter-number sequence - 5 If you want any other numbers, let me know. I guess what I'm asking, are these scores only indicative of ADHD, like the psych kept saying, or can the different scores be affected by things like APD, vision and motor-processing issues and improve if those issues are addressed? They psych kept insisting that all of the lowered scores were caused only by ADHD. The results really didn't surprise me in that they echo what I see in her school work, but I'm not 100% sure that they are explained 100% by ADHD. That brings us to meds. Obviously if she is severely ADHD, she'll probably benefit from meds. DH doesn't want to wait, or necessarily look at other things. I want to do some more exploring. I don't want to wind up sticking on a Band-Aid and ignoring other issues with the ADHD meds. DH's concern is she'll wind up with a bunch of diagnosis she may not really have because that is what these other evaluators are going to be biased to see in her. So, bottom line, how much would ADHD meds mask any other issues that may need to be explored if we started her on meds now? The other thing I wonder, if the in attention is interfering so much on her scores, and she's still "average", what is going to happen if meds dramatically help...... Stefanie Quote Link to comment Share on other sites More sharing options...
PeterPan Posted January 7, 2016 Share Posted January 7, 2016 Did they run a CTOPP? Those are some low reading and coding scores. Having a diagnosis of ADHD doesn't *exclude* those other things you listed from going on. You can certainly have more. It's totally reasonable to want her hearing screened if she is having issues with background noise, understanding people, whatever. I finally took my dd, after years of wondering about APD (right now her only label is ADHD), and turns out she's like *right there* on the line for moving over to needing the full APD eval. The audiologist ran the SCAN3 screening portion, which is the standard thing to do. At our local univ I can get that done for $35. For that price, it was a good thing to get done, kwim? She was complaining about having issues with background noise, so it was a reasonable thing to get done. Now we know which ear, to what degree, and how to compensate. That's good info for $35. But it doesn't change that she has ADHD. ;) You asked about vision. Have you taken her to a COVD doc? Again, around here you can go in and get an annual exam, ask them to *screen* for the developmental stuff, and that's around $65-100, depending on the age. That's a kind of normal thing to do, totally reasonable. I take both my kids and that's where I go myself. Getting your eyes checked is a good thing. My dd had VT, and she still has ADHD. It's not going to change that ADHD. Now about motor planning. That takes a neuropsych. You were at a neuropsych or clinical or ?? If you didn't get any testing for SLDs, no CTOPP, AND you have motor planning questions (you suspect dyspraxia), then sure, you need further evals. That would be OT *and* a neuropsych. But you can go to a neuropsych and get told the same thing, that it's ADHD. But me, I'd wonder about that big spread on the reading scores. You can get sort of a 2nd opinion, a touch up, by a neuropsych. That would be reasonable. But I wouldn't worry about motor planning unless you have reason to. Does she eat well? Does she bang into things or have issues with imitation? My dd has *some* motor planning weakness, but not enough to push it over to DCD. That's just reality, that some kids have bits but are subclinical. You just compensate and move on. You've got a new diagnosis and have things you want to try. I think meds are an important enough question that people can take some TIME. You don't have to RUSH. How old is this dc? How do THEY feel about their challenges? Yes, Cogmed, stuff for working memory, metronome work, neurofeedback, etc. etc. can help a bit. Really though, we're talking about percentages, not absolutes. So let's say your psych is right and your dd has some shocking ADHD. And let's just say it doesn't bug *you* because you yourself maybe, well maybe it's kinda normal in your family, whatever. But it's bugging your dh and the psych is seeing so much that their eyeballs are bugging out like WOW, THAT'S SOME SEVERE ADHD!! You know, to me, I think it's healthy to stop and ask why a psych who, in general, is pretty reticent on meds, with your dd is like wow, just get them ordered and get over it. I think that's a reasonable question to ask. I've had my kids through multiple psychs now, and literally NONE of the psychs have said to put my kids on ADHD meds. I kid you not. And my ds is pretty stinking challenging to work with, bolting and this and that, and still none of the psychs have said that. So I definitely think there can be scenarios where psychs were honest with you upfront about their opinions and then they see the full of the situation and go WOW, you really ought to make that move. That's why we pay psychs the bucks, for that perspective. But that's hard, because it's all new for you and not where you're at. But I think it's a reasonable thing to ask. You could even just call that psych back and talk it through for 5 minutes, saying you know, can you explain to me what you're seeing in comparison and how you got there? I need to hear things multiple times from lots of perspectives before things click. Or maybe just agree as a couple to give it three weeks. Just say, you know, we're not gonna change ANYTHING with the meds for three weeks. Takes that long to get into the ped for that appt anyway. So maybe make the appt for three weeks from now (that initial discussion appt, which is usually a longer time slot meaning it takes a while to get) and just kind of sit on it and see how you feel when you get there, kwim? That would be a way to handle it. Cogmed isn't going to get the breakthrough you're hoping. Neurofeedback isn't. All these great things give you PARTS of improvement, percentages. They're all good, and maybe some people did them and felt like wow, we got enough breakthrough that our situation was livable! But there are differences in response, differences of degree, differences of budget to afford to try all these things. Fwiw, I HATE the whole line about how you're abusing your dc if you won't put them on the meds. Everybody has opinions, but a practitioner tried that on me and it really bugged me. I feel like my dc is whole and healthy as is, and if that's their perspective, that she's broken, that's their perspective. BUT, I have allowances in my mind for meds. I think meds for purposes of safety are an absolute and just override all other questions. Safety kinda trumps everything. And people who have kids who have safety issues know what that means. We've gone without meds all these years, and we talk about it and get all wistful and then don't. It's so not pretty, I really can't say I recommend it. I'd say if your situation is so serious that an otherwise neutral on meds person is going wow, open you're mind, it's worth opening your mind. And it would be OK to say let's do Cogmed and IM and neurofeedback all summer and see where we're at in the fall. It's January. You could line up a list of options, get them all done (blow $5K, have fun) and then decide this question in late July, early August. That would be a way to approach it. I agree that some things are better done not on the meds. If you *want* to do those therapies, you could go ahead and do them. But they're not going to "cure" ADHD. Percentage improvement, yes. Gone, no. And some of that improvement will be in executive function (which improves how well they LIVE) and not necessary their ability to attend and sit down and do their work and be comfortable in their own skin. 1 Quote Link to comment Share on other sites More sharing options...
Sdel Posted January 7, 2016 Author Share Posted January 7, 2016 Did they run a CTOPP? Those are some low reading and coding scores. They ran WISC - VI, WIAT-III, Bender-Gestalt Visual Motor test, Amen's checklist, Trail Making Test, Dyslexia Screening, Conner's Behavior Scale. This is all the psych we used was licensed to do, run these tests. Her report says she got a zero on the dyslexia screening and similar to the sample identified not to have dyslexia. We decided this was the most appropriate starting point so we could get an explanation of what I was seeing in school and we'd branch out after this. Having a diagnosis of ADHD doesn't *exclude* those other things you listed from going on. You can certainly have more. It's totally reasonable to want her hearing screened if she is having issues with background noise, understanding people, whatever. I finally took my dd, after years of wondering about APD (right now her only label is ADHD), and turns out she's like *right there* on the line for moving over to needing the full APD eval. The audiologist ran the SCAN3 screening portion, which is the standard thing to do. At our local univ I can get that done for $35. For that price, it was a good thing to get done, kwim? She was complaining about having issues with background noise, so it was a reasonable thing to get done. Now we know which ear, to what degree, and how to compensate. That's good info for $35. But it doesn't change that she has ADHD. ;) You asked about vision. Have you taken her to a COVD doc? Again, around here you can go in and get an annual exam, ask them to *screen* for the developmental stuff, and that's around $65-100, depending on the age. That's a kind of normal thing to do, totally reasonable. I take both my kids and that's where I go myself. Getting your eyes checked is a good thing. My dd had VT, and she still has ADHD. It's not going to change that ADHD. I wonder about APD because I've been seeing sequencing issues. She can't follow my orally spelling a word, even when I only do 2 letters at a time. She jumbles them. She doesn't seem to be able to recall word sounds for letters orally but when you give her a sound she can usually write it correctly. She also reads words well (word reading was 106 actual out of 103 expected) but doesn't decode well if you make her try to sound it out. Her early reading score as 48 points blow the expected and the psych described this test as "irrelevant" but had to do with pre-reading skills and phoneme awareness . I'm concerned about vision issues because she just has horrible tracking, ball skills, etc. When she played soccer, you could see the mental recalibrations she was doing to go from receiving the ball and getting ready to kick it. It also seems like when she's trying to decode, she completely doesn't see certain letters (usually blends) to include them in sounding out the word. Her visual motor test said, no significant degree of visual-motor impairment but consistent with mild degree of cognitive immaturity. I guess I was just wondering, is this really all ADHD or are some other things contributing to the downward pull....considering the highly variable nature of her results. Its really like high average then low.....and some of the commentary seems contradictory. Now about motor planning. That takes a neuropsych. You were at a neuropsych or clinical or ?? If you didn't get any testing for SLDs, no CTOPP, AND you have motor planning questions (you suspect dyspraxia), then sure, you need further evals. That would be OT *and* a neuropsych. But you can go to a neuropsych and get told the same thing, that it's ADHD. But me, I'd wonder about that big spread on the reading scores. You can get sort of a 2nd opinion, a touch up, by a neuropsych. That would be reasonable. But I wouldn't worry about motor planning unless you have reason to. Does she eat well? Does she bang into things or have issues with imitation? My dd has *some* motor planning weakness, but not enough to push it over to DCD. That's just reality, that some kids have bits but are subclinical. You just compensate and move on. She needs a real OT/PT/ST eval. She had one a year or so ago and it was really like, insurance isn't going to pay so nothing is wrong but you can google these sensory activities to help you get her under control. She's 8 and still W sits. She can't tie shoes (can't even cross the strings), do a cartwheel, only in the last few months has she gotten the hang of a bike (couldn't figure out how to push the petal down past 180 in the past). I believe she has some retained reflexes because when she turns her head she turns her whole trunk, it is very obvious when she is swimming or horseback riding. She can't tell when she's hungry, tired, needs to pee, etc. Recently I had another mom (with extensive ST experience) tell me she'd automatically qualify for speech because she wasn't making her R sounds in the two or three sentences they exchanged. She doesn't say hamburger she says hambuger, etc. Always chewing, rocking/bouncing, making some annoying noise, rubbing up against stuff, and yes, walks right into traffic, people, things on a daily basis and says she "didn't see it". She's a bit awkward in her speech, often repeats herself directly in conversations, and repeats the same conversations over and over, some multiple times a day. She also has 2 cousins diagnosed with autism. You know, to me, I think it's healthy to stop and ask why a psych who, in general, is pretty reticent on meds, with your dd is like wow, just get them ordered and get over it. I think that's a reasonable question to ask. I got the impression she was closer to the medicate it all philosophy. She just isn't by law allowed to recommend meds since she can't prescribe them. But, that said, she mentioned choosing to medicate no less than 7 times, and the way she was talking it came across that she believed it was severe. Or maybe just agree as a couple to give it three weeks. Just say, you know, we're not gonna change ANYTHING with the meds for three weeks. Takes that long to get into the ped for that appt anyway. So maybe make the appt for three weeks from now (that initial discussion appt, which is usually a longer time slot meaning it takes a while to get) and just kind of sit on it and see how you feel when you get there, kwim? That would be a way to handle it. Cogmed isn't going to get the breakthrough you're hoping. Neurofeedback isn't. All these great things give you PARTS of improvement, percentages. They're all good, and maybe some people did them and felt like wow, we got enough breakthrough that our situation was livable! But there are differences in response, differences of degree, differences of budget to afford to try all these things. I really just don't want to medicate and call it done if there really are things like APD, vision, or sensory issues that could be addressed to. Our disagreement is if we should medicate now and then do these other things, or do we really need to wait to medicate so the other evals get a fuller picture? DH said he'd be okay to wait a few months, but not much more, and I'm not sure I can get all the things I want to explore done by then. Stefanie Quote Link to comment Share on other sites More sharing options...
PeterPan Posted January 7, 2016 Share Posted January 7, 2016 I'm seeing a lot of working memory deficits in what you described. The stuff you're saying flags for APD, to me, is all working memory (the ADHD). How is she in noisy places like Chipotle? The working memory deficits *can* explain the decoding problems. You might find the name of the dyslexia screening tool she used when you get your final report and see how it compares to the CTOPP and whether it was a normed, standardized tool. The CTOPP gives you lots of breakdowns, including a RAN/RAS score, and then you can compare those scores to IQ and look for discrepancy. So you're going to get her speech and OT/PT evals? Always chewing/rocking/bouncing? Did the psych do any more screenings to see if it should push over to ASD? Extreme EF deficits (severe ADHD) are directly correlated to an ASD diagnosis, even more than pragmatics scores at this age. I think you have every right to be concerned about that. Have you thought about taking her to an autism clinic? I'm not saying she has autism. I'm just thinking that since you need OT, speech, etc. evals anyway, that would be a way to approach the ASD question, getting a team approach and getting all the remaining things done at once. Nothing you're looking at is going to "fix" the things you're describing. You can do all the cogmed and neurofeedback and whatever you want, but she's still going to have challenges. If you get more evals, you'll have more information to have a more multi-pronged, COMPLETE approach. Even meds aren't a COMPLETE approach. They're just one component. She would STILL need OT, social stories, etc. etc. So I would suggest you keep going, get the remaining evals. And if you want to get started on some meds during this time, you know, might not be the end of the world. Might help you chill some of what is ADHD to let you see what *remains*. That can be helpful. I can just promise you that there's NOTHING you're going to do that's going to make that list go away completely, not like oh shazam and certainly not just one thing. So if meds are a line in the sand and your situation is as serious as what you're describing, I'd be thinking multi-pronged. Like meds *and* more evals *and* *and* *and*. 1 Quote Link to comment Share on other sites More sharing options...
Guest Posted January 7, 2016 Share Posted January 7, 2016 (edited) nm Edited February 11, 2016 by Guest Quote Link to comment Share on other sites More sharing options...
kbutton Posted January 7, 2016 Share Posted January 7, 2016 So, you have the girl version of my 8 y.o., only with more ADHD and a sib with ASD instead of cousins with ASD? We are piecing things together after being told ADHD is the answer for it all. We do have a CAPD diagnosis, oral motor problems, speech motor problems, ocular motor problems (see a pattern with motor?), but he doesn't have DCD...right. Sigh. We did get some benefit from OT, but we're seeing better improvement in a lot of physical stuff with vision therapy (we also had some huge improvement with my older son's coordination when he did VT, but he his challenges were a bit different with the eye thing). The ocular motor stuff came and went and was always borderline until just recently. He finally crossed that threshold for "now it's real." Our COVD optometrist checks for retained reflexes and then targets them specifically--a huge portion of the therapy is billed directly as OT services. Our OT just looked for where reflexes might interfere with their therapy, which translated into "If they can make improvement with these exercises, then the reflexes must already be integrated or coming close to being integrated." It seems like around here, you have to go to a place like Brain Balance to get work on reflexes or qualify for VT to get that help. Your daughter could have similar retained reflexes to my son, but it might not tip her vision results enough to do VT, or your VT may have a slightly different approach, busier practice, and may be triaging. I am not certain that all VT places do the same things that ours does. But yes, when parts of the body work in tandem that shouldn't and some parts don't seem to be getting messages, then you probably are looking at reflexes. If that is the case, you probably need to work on that stuff before doing stuff like metronome work. Our OT thought my son would benefit from Bal-a-vis-x, for example, but he couldn't even do the basic stuff, probably because of the reflexes. Incidentally, my older son had more frank vision issues (convergence, especially), but was asymptomatic for a long time. I didn't know when he had VT that they were targeting reflexes. When I told the COVD how much the VT had actually helped his overall coordination, she was really surprised and told me that while that happens with some kids, my older son had not shown that much evidence of retained reflexes. The words we used to describe his coordination improvement were "life-changing." So, I think there is a personal component to this, and you might need to ask whatever therapist (OT, PT, VT, etc.) to look a little deeper. We basically got lucky, and it's now leading to answers for my younger son. It's the ONLY place that has offered us reflex work locally, and it's the cheapest option locally. The following directions thing can be CAPD, but it's a hallmark of ADHD too. I think that meds can cover up problems in testing, but you don't have to test on meds, and you don't have to test everything on meds. Meds are in and out of your system within hours. That's not to convince you, but if you feel it could be helpful, I don't think it's make it or break it on testing. We are not ready to move on meds for our younger DS because we have too many questions and loose pieces that no one has pulled together, and I think his ADHD will be mild when the other factors are helped. I think there is a great possibility that we will max out strategies at some point and then use meds, but not until I have more answers. He's not climbing the walls, etc. He's not terribly impulsive. We have more margin around the issues that meds target in our case. I will note that the particular spread in scores you have, especially with the sky high verbal and oral expression, combined with coordination issues and lags in performance and perceptual reasoning used to be called non-verbal learning disorder. It's not a diagnosis anymore, but a lot of kids who fit that profile qualify for a PDD-NOS diagnosis or autism diagnosis, which can open doors to more information and more options. We are working with a second psych (one we should have used in the first place), because we see a trend emerging with my younger son around NVLD patterns. It's not definitive right now, but with high scoring children, it can appear later. You might want, at some point, to get a second opinion (look at and discuss your child and the tests, not necessarily a whole new set of tests) with someone who sees a LOT of twice-exceptional kids (gifted plus some other exceptionality). When they see high scores, even in just one area, they will start looking more deeply and broadly for explanations. You don't get scores in the Superior range and above by accident. 1 Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted January 7, 2016 Share Posted January 7, 2016 Like kbutton, I thought of nld as a possibility. 1 Quote Link to comment Share on other sites More sharing options...
Sdel Posted January 7, 2016 Author Share Posted January 7, 2016 I'm seeing a lot of working memory deficits in what you described. The stuff you're saying flags for APD, to me, is all working memory (the ADHD). How is she in noisy places like Chipotle? The working memory deficits *can* explain the decoding problems. You might find the name of the dyslexia screening tool she used when you get your final report and see how it compares to the CTOPP and whether it was a normed, standardized tool. The CTOPP gives you lots of breakdowns, including a RAN/RAS score, and then you can compare those scores to IQ and look for discrepancy. I actually am not concerned with dyslexia. It's never been something that just really jumped out at me as, oh, this describes her. Other than the inattention issues with dyslexia, that obviously would be present with ADHD, the only other issue is with reversals, and those have always presented more as an "I'm bored, let me see if I can play a game." since they are always corrected the second she finishes them. The dyslexia test however was answer this list of questions with a score of 0 - 4 and here are a few lines to put down a few other concerns thing. So you're going to get her speech and OT/PT evals? Always chewing/rocking/bouncing? Did the psych do any more screenings to see if it should push over to ASD? Extreme EF deficits (severe ADHD) are directly correlated to an ASD diagnosis, even more than pragmatics scores at this age. I think you have every right to be concerned about that. Have you thought about taking her to an autism clinic? I'm not saying she has autism. I'm just thinking that since you need OT, speech, etc. evals anyway, that would be a way to approach the ASD question, getting a team approach and getting all the remaining things done at once. Yes, as soon as I can do enough research to find the place I want I'll be making appointments. I may get my aunt to ask one of her friends who works for an autism clinic (psychologist) to see if she'll do an informal interview one afternoon at my aunt's house and gut check me. I'd consider going with their clinic directly except its a 4 hour drive one way....but I'd certainly consider a family visit to get a gut check if the opportunity presents itself. Nothing you're looking at is going to "fix" the things you're describing. You can do all the cogmed and neurofeedback and whatever you want, but she's still going to have challenges. If you get more evals, you'll have more information to have a more multi-pronged, COMPLETE approach. Even meds aren't a COMPLETE approach. They're just one component. She would STILL need OT, social stories, etc. etc. So I would suggest you keep going, get the remaining evals. And if you want to get started on some meds during this time, you know, might not be the end of the world. Might help you chill some of what is ADHD to let you see what *remains*. That can be helpful. I can just promise you that there's NOTHING you're going to do that's going to make that list go away completely, not like oh shazam and certainly not just one thing. So if meds are a line in the sand and your situation is as serious as what you're describing, I'd be thinking multi-pronged. Like meds *and* more evals *and* *and* *and*. Stefanie Quote Link to comment Share on other sites More sharing options...
Sdel Posted January 7, 2016 Author Share Posted January 7, 2016 I will note that the particular spread in scores you have, especially with the sky high verbal and oral expression, combined with coordination issues and lags in performance and perceptual reasoning used to be called non-verbal learning disorder. It's not a diagnosis anymore, but a lot of kids who fit that profile qualify for a PDD-NOS diagnosis or autism diagnosis, which can open doors to more information and more options. We are working with a second psych (one we should have used in the first place), because we see a trend emerging with my younger son around NVLD patterns. It's not definitive right now, but with high scoring children, it can appear later. You might want, at some point, to get a second opinion (look at and discuss your child and the tests, not necessarily a whole new set of tests) with someone who sees a LOT of twice-exceptional kids (gifted plus some other exceptionality). When they see high scores, even in just one area, they will start looking more deeply and broadly for explanations. You don't get scores in the Superior range and above by accident. When I was looking at different diagnoses, I did think NVLD was ringing a few bells. Stefanie 1 Quote Link to comment Share on other sites More sharing options...
Storygirl Posted January 7, 2016 Share Posted January 7, 2016 DS11 has NVLD, DCD (also called dyspraxia), ADHD combined type, low processing speed, SPD, and additional learning disorders. We are going to take him to an autism clinic to have a thorough screening, because his previous evaluations were only cursory, and he is complex. I'll just say that some of what you are describing sounds very familiar. I see Developmental Coordination Disorder symptoms and sensory-related issues in what you describe. Although the perceptual reasoning score that you gave was not low, a 20 point gap between that and the verbal suggests NVLD as something to look into. With NVLD, usually evidence builds as they get older. Early success in math and reading can stall in mid-elementary. DS11 has LDs in math and reading comprehension. I wouldn't have guessed either when he was 8. Very common with NVLD. Visual spatial things are especially hard for him -- also due to the NVLD. I think once you hit fourth or fifth grade, the gap in these areas can start to widen very quickly. It's something to watch for as she grows. There is no therapy for NVLD specifically -- it is just working on the symptoms that are causing trouble. I suspect OT might offer benefits for your daughter. To be honest, there are a few red flags for what could be dyslexia in your descriptions (DD10 has dyslexia), so I wouldn't discount that as a possible problem, though her reading issues could just as easily be caused by something else, as Elizabeth mentioned. You mentioned phonemic awareness, but I couldn't tell if you were saying that she was good at it or struggled. I think it's great that you have some screening done. I think with kids who are complex, it sometimes takes multiple evaluations to get to the bottom of things. We've had various evaluations by psychologist, psychiatrist, speech, OT, neuropsychologist, and the school. And we still need more answers. It takes some time. I can add my experience with meds later, since you are asking questions about that, but I have to run out the door now. 1 Quote Link to comment Share on other sites More sharing options...
Sdel Posted January 8, 2016 Author Share Posted January 8, 2016 To be honest, there are a few red flags for what could be dyslexia in your descriptions (DD10 has dyslexia), so I wouldn't discount that as a possible problem, though her reading issues could just as easily be caused by something else, as Elizabeth mentioned. You mentioned phonemic awareness, but I couldn't tell if you were saying that she was good at it or struggled. She is admittedly very mixed on her phonemic awareness. Some areas she's excellent on, others kind of weak. I'm just going with my gut.....her "dyslexia" symptoms have more to do with possible vision issues or even plain careless mistakes than brain processing. She reverses, but the non-verbal cues she gives at the same time make me feel those reversals are a function of defiance (she's usually looking at me to see if I'll correct her, making a big show of writing it, and if I don't step in to correct she'll immediately correct herself) and the rate of them goes down dramatically on her non-defiance days. On the other hand, she prefers things to be loud, she talks loudly, she doesn't seem to follow conversations or what is going on when there is a lot going on, she will occasionally ask for clarification on what phonemes were actually said (today she asked if it was grownie or brownie that was said), according to someone with years of speech therapy she doesn't make all her sounds correctly, it can be hard to understand what she is saying when there is a lot of background noise (she mumbles more often), loves jokes but obviously doesn't understand how jokes work, her primary phonemic awareness issues are with similar sounds, R sounds (which she often omits during speaking), and the third/fourth vowel sounds that are similar sounds to other vowels. Stefanie Quote Link to comment Share on other sites More sharing options...
kbutton Posted January 8, 2016 Share Posted January 8, 2016 On the other hand, she prefers things to be loud, she talks loudly, she doesn't seem to follow conversations or what is going on when there is a lot going on, she will occasionally ask for clarification on what phonemes were actually said (today she asked if it was grownie or brownie that was said), according to someone with years of speech therapy she doesn't make all her sounds correctly, it can be hard to understand what she is saying when there is a lot of background noise (she mumbles more often), loves jokes but obviously doesn't understand how jokes work, her primary phonemic awareness issues are with similar sounds, R sounds (which she often omits during speaking), and the third/fourth vowel sounds that are similar sounds to other vowels. Stefanie That sounds to me like a combination of not hearing the sounds correctly (CAPD or hearing issues), and simultaneously, not easily troubleshooting what it might be that someone did say (could also be a facet of CAPD, and can be social in nature or executive function-related). I would seriously consider a hearing test (audiologist, not pediatrician) and a CAPD battery in a booth. I would also have her language tested--CELF or CASL. CASL seems to be preferred when CAPD is a possibility. My younger son that has motor speech issues (apraxia, but not so severe that he can't talk) doesn't say most of his sounds using the right muscles and movements (though technically L and R are the only "missing" sounds), and he can get kind of mushed mouth at times. He also told me recently that it's hard for him to make the right sounds when he has to talk loudly. We have not started therapy yet--we are going to be starting PROMPT therapy. The "regular" SLP totally missed the boat on all his issues two years ago, and they've gotten worse in some ways (he lost an L sound during that time). CAPD and ADHD have some similar facets, but not exactly the same symptoms. However, even a little EF trouble or attention issues, and you have a lot fewer resources to designate to things like overcoming CAPD, etc. 1 Quote Link to comment Share on other sites More sharing options...
Storygirl Posted January 8, 2016 Share Posted January 8, 2016 Now your descriptions are reminding my of my second son! It's hard to tell when DS10 is being stubborn and uncooperative (passive aggressive traits) and when he really doesn't understand something. Sometimes it is a mix of not understanding and being stubborn at the exact same time. I will explain something fully, only to have him say, "What?" in a confused way when I'm done talking. He tunes out when in noisy places and has trouble following oral directions. When we were homeschooling, I could inevitably sense him getting grumpier and grumpier when I talked a lot to explain lessons. He often mumbles, though he is able to pronounce his words correctly. He just confessed to his teacher at school that he thinks he misses information in class (proud of him for talking to her about that!). I've long wondered about auditory processing, so I recently took him for an audiology exam. Surprise! He has hearing loss and is getting hearing aids. I wish we had caught it at a younger age. I think he would not have spent so much time feeling frustrated and misunderstood. I think a hearing screening might not be a bad idea for your daughter. Check with your nearby public university. If they have an audiology department, they may provide free or inexpensive screenings to the public as part of their teaching model. We were impressed with our university clinic. 3 Quote Link to comment Share on other sites More sharing options...
Sdel Posted January 8, 2016 Author Share Posted January 8, 2016 Now your descriptions are reminding my of my second son! It's hard to tell when DS10 is being stubborn and uncooperative (passive aggressive traits) and when he really doesn't understand something. Sometimes it is a mix of not understanding and being stubborn at the exact same time. I will explain something fully, only to have him say, "What?" in a confused way when I'm done talking. He tunes out when in noisy places and has trouble following oral directions. When we were homeschooling, I could inevitably sense him getting grumpier and grumpier when I talked a lot to explain lessons. He often mumbles, though he is able to pronounce his words correctly. This is DD. I'm convinced we are so behind because of defiance and it is hard to tell when she's being passive aggressive or really doesn't understand. I know she knows her math facts, I don't think she actually has had any problems learning them or remembering them, but she also still gets a lot wrong during drill. She fights written math drills more than oral. I have noticed that if I push the facts and don't let up, she eventually gets to where she answers them as I would expect her to answer instead of melting down, usually after she's asked when she can stop. Same with her procedural math calculations. Math I think is a lot of defiance. Where I'm a little less sure is reading or listening comprehension. Sometimes she narrates consistently, if formulaic, some times she scrunches down and makes halting answers followed by quick, incorrect, guess style answers while squinting up at me (I'm reading as defiance) and other times I just get "I don't know, let me read it again" (a toss up, but I think more honest with reading comp than oral). It's very frustrating. Stefanie Quote Link to comment Share on other sites More sharing options...
PeterPan Posted January 8, 2016 Share Posted January 8, 2016 (edited) Sdel, I think the challenge with what you're describing is that it still, no matter what the final explanation, evidences that SOMETHING is wrong. Pudewa has this saying that apparently he copied from someone else, but the jist is that if they *could* do it they *would* do it. Or, when we're getting that kind of pushback from a young child, something is up. Young children are very motivated to please, so when they aren't and it's that arry, something is up. With your scenario, where something is making the math drills hard for her (generalization, the writing, the processing speed, the word retrieval, maybe a math disability, whatever) and she *can* do it but is giving pushback, I would probably make sure you're modifying everything YOU can on your end to eliminate factors that are due to disability (scribe, go to oral, eliminate the time component, shorter sessions, etc.), and then REWARD with positive things for what must be done that is unavoidable. I think a lot of scenarios that aggravate disabilities can be worked around once we pin down what the disability and problem is. But for where they CAN'T be, that's when we pull out the big guns and motivate and reward and change it to a positive dynamic. Because they're kids, kwim? And really, a little reward structure can go a long way. Edited January 8, 2016 by OhElizabeth 3 Quote Link to comment Share on other sites More sharing options...
Sdel Posted January 8, 2016 Author Share Posted January 8, 2016 OhE, That is the small stuff. The defiance is in everything. Except for like the first hour, sometimes not even that long, that she is awake, everything gets that passive aggressive resistance. Breakfast usually starts with her demanding something we don't have and ending with me saying "don't eat then". The day ends with her refusing to stay in her room at bedtime until threatened with some consequence. Everything in between is a fight. In a lot of ways, it isn't that she needs modification, it is because it has become habit to react this way when she is bored. Rewards actually do very little for her and get manipulated...she is very much like RAD kids in this. Stefanie Quote Link to comment Share on other sites More sharing options...
nature girl Posted January 8, 2016 Share Posted January 8, 2016 It sounds like you're on the brink of ODD there. Have you read Kazdin? It's made all the difference for my DD, who was also on the brink last summer. If you think she's acting up because she's bored, I'd try not react at all to the misbehavior. Having you get upset is exciting! It brings on the dopamine! What would happen if you said calmly, "Your choices are cereal or egg and toast," then turned away without any more of a reaction? Also, if rewards don't work, how does she respond to praise? Even praise for ridiculous things works for us...DD is refusing to brush her teeth, I see her running past the bathroom and PRAISE, PRAISE, PRAISE as if I think she actually was running toward it. More often than not she'll get all happy and go in to brush... 1 Quote Link to comment Share on other sites More sharing options...
Sdel Posted January 8, 2016 Author Share Posted January 8, 2016 It sounds like you're on the brink of ODD there. Have you read Kazdin? It's made all the difference for my DD, who was also on the brink last summer. She's not on the brink, she's probably been ODD since she was 3. She's not my first rodeo with ODD style behavior either. One of DH's kids would probably diagnose with conduct disorder (while he was in his teens) or sociopathy (now that he's an adult) if the assessor was being honest and not too afraid to diagnose it. Consistent praise gets manipulated and turned into a fight too. She turns it into a demand for a "reward" and then fights about why she isn't getting the reward that wasn't ever offered. The best thing that has worked is random reward and praise, and obviously not getting overly worked up with the defiance and standing my ground. But obviously it is a huge time and energy suck and contributes to being behind. Stefanie Quote Link to comment Share on other sites More sharing options...
kbutton Posted January 8, 2016 Share Posted January 8, 2016 OhE, That is the small stuff. The defiance is in everything. Except for like the first hour, sometimes not even that long, that she is awake, everything gets that passive aggressive resistance. Breakfast usually starts with her demanding something we don't have and ending with me saying "don't eat then". The day ends with her refusing to stay in her room at bedtime until threatened with some consequence. Everything in between is a fight. In a lot of ways, it isn't that she needs modification, it is because it has become habit to react this way when she is bored. Rewards actually do very little for her and get manipulated...she is very much like RAD kids in this. Stefanie This sounds like my ASD son (who is also gifted) before he was diagnosed and we knew what to do about it. Defiance = anxiety for him. Oddly enough, his responses at that stage (8-9 age range) have a lot in common with a friend's daughter who has RAD. And that daughter, coincidentally gravitates toward and is comfortable around kids with ASD. I don't know a lot about ODD, but I would definitely be thinking that you're going to get additional labels down the raod. I would be seeking a behavioralist now and worrying about the diagnosis later. 2 Quote Link to comment Share on other sites More sharing options...
PeterPan Posted January 9, 2016 Share Posted January 9, 2016 I'm with Kbutton. You're walking through ODD right into ASD, so you might as well go get the real help. You've already exhausted normal good parenting techniques. You want a behavioralist. In the meantime, read The Explosive Child and see if collaboration helps. For instance, I allow my ds to refuse any meal and always have the alternates (pb&j, cereal, eggs). 3 Quote Link to comment Share on other sites More sharing options...
Targhee Posted January 9, 2016 Share Posted January 9, 2016 ADHD could account for most of that, but that doesn't mean it's the only thing going on. Having not screened for CAPD or SPD or ASD or XYZ your evaluator only really could talking about what she did screen for - ADHD. IQ and Achievement, and Ability, tests tell you those things -IQ, Achievement/Ability. The discrepancies between expected and actual results tells you something is going on. It doesn't tell you what is going on. BUT evaluations highly indicative ADHD *are* telling you something. Whether it was the evaluator's intention or not, it sounds like she was saying "address the ADHD and then we can see if it's something else." I'm not for blindly following suggestions to medicate, but I also am NOT for not medicating just because. I highly suggest you research ADHD medication and the outcomes for those who have used that therapy, from scientific research (not from blogs and news articles, or anyone with an agenda). Nearly every parent I have spoken with who has started meds for child (or themselves) wishes they would have started sooner. I think you as parent have to make the decisions for your child, and if you choose not to medicate I completely support you. There is such a mixed bag of social stigmas, media hype, current limits to scientific understanding, anxious parents, and what not surrounding ADHD that it can be hard to filter information, process it, and make decisions. I don't think the evaluator should push meds, but I do think every ADHD parent should consider them objectively. Best wishes! 3 Quote Link to comment Share on other sites More sharing options...
PeterPan Posted January 9, 2016 Share Posted January 9, 2016 (edited) Have you seen this book? I'm not saying it's the ultimate. I just requested it from the library again. I had gotten it a few months (or maybe a year?) ago and it didn't click. Now I'm looking at it and his analysis seems helpful to me. It's No More Meltdowns by Baker. http://www.amazon.com/gp/product/1932565620?dpID=41qJTC8OEGL&dpSrc=sims&preST=_SL500_SR90%2C135_&refRID=D3ZZHCQDBWZSTD30W91B&ref_=pd_rhf_eetyp_s_cp_1 Edited January 9, 2016 by OhElizabeth Quote Link to comment Share on other sites More sharing options...
nature girl Posted January 9, 2016 Share Posted January 9, 2016 You might want to listen to this video, on emotional regulation in ADHD. About midway, he starts talking about ODD. If I'm remembering correctly, he says that meds will help to treat ODD as much as they help with the attentional aspects, and recommends that parents start early to prevent the opposition from becoming ingrained. Actually, the whole video is worth watching, I learned so much about what my DD is going through. 2 Quote Link to comment Share on other sites More sharing options...
Sdel Posted January 10, 2016 Author Share Posted January 10, 2016 Just want to say thanks for all the recommendations. I've already read some of the book suggestions and will check out the new ones. I had some people with experience with test scores look at her full results and they've also mentioned the NVLD profile, but also mentioned not to be surprised if meds don't help. I think we'll be trying meds. She needs something to help take the edge off. Stefanie 3 Quote Link to comment Share on other sites More sharing options...
Sdel Posted January 22, 2016 Author Share Posted January 22, 2016 Just wanted to post an update. Today was the first day of meds. We went with Focalin. Its short acting and are giving it 2 times a day. We did close to an hour and a half of school today, with only one 20 minute break. She retained the stuff she read. She still talked and interrupted quite a bit and needing redirection, but otherwise she wasn't squirmy or grabby. Later we went to the store and it was heaven. Not one hop, not one twirl, not one woowoo, not one leap, not one arm flail, not one spin, not one sudden stop in the parking lot to pick up some random object. Stefanie 7 Quote Link to comment Share on other sites More sharing options...
Storygirl Posted January 22, 2016 Share Posted January 22, 2016 :thumbup: A good start! I hope it continues to go well! 1 Quote Link to comment Share on other sites More sharing options...
kbutton Posted January 23, 2016 Share Posted January 23, 2016 That's awesome! I remember that moment of engagement in my son's eyes rather than like he was always "elsewhere." Priceless! And not having things knocked off the shelf in each aisle...so nice. 1 Quote Link to comment Share on other sites More sharing options...
DeniseF Posted January 24, 2016 Share Posted January 24, 2016 My ds started Focalin XR in September and it's been a game-changer in many aspects and, though it hasn't "gotten rid of" all the ADHD symptoms, it has made it possible to work with him with a therapist on skills and focus on schoolwork, etc, and he loves his success!!! A funny moment: The other day I told him he'd been working hard for an hour, did he want to run back and forth in the basement? He scrunched up his face and looked at me and said "WHY would I want to do THAT?" Internally, I laughed. He doesn't seem to be aware that when he's not on medication he is flailing around, flinging himself in all directions constantly and unable to sit still for one minute and he spends much of the dayon breaks to swing, run, skate around the house, etc. Good luck to you SDel. 2 Quote Link to comment Share on other sites More sharing options...
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