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My first thought too would be that the school staff does not realize that the signs for all the mentioned diagnoses (PDD, Asperger's, Anxiety, ...) could also be big signs for giftedness. When they see "trouble" they think in negative terms rather than finding out what's really behind it. Especially if the neuropsych didn't see it.

Wow. I guess my gut says--that is too many things to come back high on. The teachers are just scoring her high on every negative measure out there. This may mean she is really shut down, but how could she really have ALL that? Do you feel like the environment is very toxic to her?

I would absolutely want data to support the judgments in the report. What standardized assessments were done?


Task initiation is getting going on a task; very hard for people who have ADHD, not usually impaired in people with anxiety AFAIK. People who have impaired initiation often show a frustrating gap between the time they are given an instruction and the time they actually acknowledge it or start to complete it. It can make a child look oppositional even if it's really a processing glitch.

Executive function issues (often associated with ASDs and ADHD) show in a lot of ways, but the gist is that it's the skill set that lets you stay on task from start to finish without wandering off, lets you bring yourself back to your task if you are temporarily distracted, etc. It's the command-and-control center for getting things done.


IME, EF-challenged people do find standardized tests exhausting and annoying. They require a high level of attention and control of one's own brain. To get accurate results, your DD may need tests chopped into smaller pieces over more days.


The EF stuff can look baffling and be very aggravating to adults in a school setting, who spend tons of time giving instructions and expect immediate compliance. Here is a kid who has the brains to comply, and yet she doesn't comply, so it can look like conduct disorder etc. Also frustrating for the kid, because even if she wants to comply her get-going skills may not be letting her do it, and she lands in trouble all the time.

I wonder if you can find someone (sometimes called "educational therapist") to work on the EF problems specifically and see if the other things improve.

What is he suggesting for the anxiety?

Did he do any testing that would reveal deficits in perspective-taking skills? (ADOS?) I wouldn't be eager to do a group social skills class for this kid unless it was clear to me what skills were lacking and that these were the precise skills that would be addressed.

DeeDee

I kind of disagree with this, though. As I've said before, I am not a big fan of definitions of giftedness that paper over behavioral struggles (Dabrowski etc.). Most gifted kids IME do not show serious behavior struggles of this kind; and ignoring the struggles can mean that another exceptionality goes unaddressed, when addressing it can improve quality of life.

All the more reason to get to the bottom of what's going on.

DeeDee

I'm just thinking that I'd rather take the neuropsych's opinion than the school who's usually too fast to label? Personally, as I child, I would had been labeled ADD, Asperger's, OCD with severe social Anxiety to say the least but I never did (wasn't something that was done back then). But in the end I just turned out to be gifted with some social Anxiety but nothing I couldn't keep under control.

Maybe get further evaluation and / or second opinion???

Actually I think that the phrase "barely 2e" describes the data in the NEPSY - one thing about neuropsychs that can be a bit frustrating and confusing is they will usually describe the data they collect in a very specific way according to how the data should be described - for instance, when they use descriptive words rather than numbers to describe WISC results they use terms such as "superior" "very superior" etc that are actually defined for a specific range of numbers. When you look at your dd's NEPSY scores, they are all consistently very high except for "Word Generation" which is within the average range (on the lower side, 10 is the middle of the bell curve for NEPSY subtests). So techically speaking, that really does seem to describe a "barely 2e" situation when you look at WPSSI (I looked at your past posts, you posted it as 149), WJ-III (all high numbers except for handwriting (50th percentile) and unable to complete the math test, and NEPSY (all high numbers except word generation).

One thing that I wonder about is could the lower scores on word generation, handwriting, and inability to complete the math test on the WJ-III be tied together in some way.

I'm not sure, but have you posted your dd's WPSSI subtest results here? Was there any scatter?


Anxiety is a diagnosis, and it can be very real. Is it *the* diagnosis for your dd? It's possible that only time will tell. Many of us here with children with challenges have found that there isn't one definitive report from one professional that gives you the definitive answer and sets the path forward in stone.


You actually do have a lot of data here, and a 100 pages long report most likely contains quite a bit of observations from the tester. The trick is putting it all together with your observations of your dd's challenges and making sense of it. Chances are it's not going to neatly all fall together with one report and be completely clear, but as you go forward, you've now got this extra information to collate with what you already know about your dd and I'm guessing that as you have time to let the report sink in and think it through you'll find that some of it makes sense, maybe some of it doesn't, but it will help give you direction for what you need to do next.



Have you had a follow-up interview with the neuropsych after receiving the report? If you haven't, schedule one. It has always helped me tremendously to read the report, let the results sink in, and then meet with the neuropsych one on one to ask questions I have. For me, that interview usually gives me so much *more* to think about that I schedule a second interview a few weeks later just to make sure I get all my questions answered.


They are! Which is good news But - having all scores be incredibly fine and one little score be less than optimal (or even average for HG/+ kiddos... can be *extremely* challenging depending on the nature of the challenge. Another thing - you can't *just* look at the NEPSY scores to get a full picture of your dd's functioning, you need to look at NEPSY+WPSSI+WJ-III... and there is something low in at least the NEPSY + WJ-III.... so I'd ask the neuropsych if they are possibly related.



Which math subtest was it? How is it administered (oral response, written, did she have to read the directions, things like that - plus what specific skill was it measuring, and was it the last test or was it given somewhere in the middle?).

If it wasn't the last test given after a long block of tests, and if there wasn't some type of anxiety trigger noted by the neuropsych, I'd really wonder if there wasn't some type of challenge causing frustration for your dd directly related to that test in some way - her other tests are so consistently high across the board it's clear that she was having a good test day, that she wasn't across the board anxious, and she must have had a somewhat good rapport with the neuropsych.


Her teachers are not psychiatrists/psychologists/medical drs/etc. They are teachers. They are seeing a little girl who's clearly having challenges at school, and that's going to be reflected in the surveys they are given as part of a neuropsych eval. I think what you have to do at this point is simply acknowledge something is up, and it's not clear, and the teacher/caregiver input *is* all over the place at this point. It doesn't point in one specific direction, but it indicates your dd needs help.


It really helps me to think of input like this as simply data, rather than good or not good. It's actually a good thing to have data - even if it seems depressing on the surface.


I would give his recommendations a try - the first step is simply calling the people he's referred you to and asking them questions about what their therapies would involve. If it sounds reasonable and like it makes sense for your dd, you can try them out and if they seem to work, keep at it, if they aren't working, drop it. Along the way, you'll be collecting more data, and you may also find things help.


Sending you a huge hug - this is simply one point in your journey, and you're doing exactly what you need to do for your dd - trying to find answers and trying to put together meaningful help. Things will look better as you move forward. I will never forget how I felt when we received our ds' first neuropsych report - the neuropsych used the words "his disability" in passing, they just flew out of her mouth very casually and the pit of my stomach literally fell through the floor - I'd never in a million years thought I would be parenting a child with a "disability" (please know I'm not a shallow person! It just wasn't on my radar... and I'd spent 8 years at that point raising a child who was clearly exceptionally intellectually gifted.. and yes, at that point in time, I had no idea the two could coincide)... so I'm just mentioning that because I've been in that spot where suddenly things seem very grim... and really it *does* get better.

Best wishes,

polarbear

ps - I'll second all of DeeDee's advice

...although, clearly, your daughter had difficulty with the neuropsych, too? That is, sounds like she was oppositional in some way? Is she oppositional with you and your spouse? Can her behavior be okay under the right circumstances? I reread some back posts and I find it hard to imagine exactly what is going on, but I am intrigued, and also I feel for you. (My DD can also be oppositional and shows/has shown signs of ADHD, ASD, ODD....she is also very good at pushing adults' buttons and outwitting adults, and is becoming a fast and accomplished liar, which is not looking very ASD, I must say...)

ETA that the only diagnoses she has at this point are anxiety and depression, though she has only been casually screened for ASD and ADHD (she did a computerized screener for that). I am looking at her behavior through the anxiety lens more and more these days with more and more "aha" moments. Anxiety is no cakewalk.

There are other types of reasons that task initiation (and word generation) might be impaired relative to overall EF and intelligence (outside of ADHD). And many of us here with 2e kids have their "impairments" show up as average range scores on tests like the NEPSY/WISC/etc. It's the discrepancy in scores (high to low) that means something, not the absolute number - other than in the technical description in the report. The type of number your dd has means that it is technically described as "mild". If I remember correctly my ds has #s on a NEPSY subtest that are 4 or 5 and his report description is "moderately impaired". Then in the summary section his neuropsych pulls all of his tests together and describes how they impact his functioning - and she uses the word "severe" there - but it's not tied to a specific test. And it is relatively severe - so I'm just offering that up as an example of - you can't get to hung up on the words used to describe the data as prescribed by professional guidelines... you need to look at how the whole child is functioning.

polarbear

ps - I was also surprised to read that high #s on the other EF skills rules out ADHD - I thought ADHD was usually assessed through surveys, and our neuropsych also had a computerized type of attention test she uses in her evals. I thought ADHD could be reflected in NEPSY scores, but didn't realize they could be used to rule out ADHD. BUT - I'm not a professional so my thoughts are pretty much meaningless and should be ignored on this!

I suspect the reason each teacher thought they saw a different diagnosis is due in large part to the fact they are teachers, not psychs trained in diagnosis. We've experienced some of the same thing, and what's happened with us is the teacher who has seen a lot of kids with ADHD diagnosis picks up on the symptoms that might be ADHD related (or look like it), and the counselor who has a large percentage of clients on the autism spectrum picked up on symptoms that might overlap with ASD diagnosis etc - so everyone who doesn't have the full expertise to diagnose is seeing what they know and extrapolating that to a suspected diagnosis.

polarbear

Well, if they said, sure, it'll get better, and then it doesn't, then they're negligent.

And it's true that intervening to correct these behaviors is likely going to be more effective than doing nothing, IMO. But choosing the intervention is going to be important.


Also: those questionnaires don't ask the teacher "do you think it's autism?"-- they ask for observed behaviors, many questions, some of which are irrelevant. It's entirely believable to me that your DD acts differently with different teachers across the day based on what demands are placed on her, how she feels about the teacher, etc.


My feeling is that you are starting to get data on relative lows; that's useful. I'd work on those spots and see how it goes.

I have a very high opinion of CBT as a method. It does require willingness on the part of the patient, so if she's oppositional with everybody but you and gram, that may be difficult to do at age 5. (5 is also very young for CBT; but if you found the right person, her strength in theory of mind is an asset there too.)

What does the neuropsych think will improve the oppositional behavior? That seems like an important element to making her life smoother overall.

DeeDee

Not discounting DeeDee's excellent input, but--

Task initiation is getting going on a task; very hard for people who have ADHD, not usually impaired in people with anxiety AFAIK. People who have impaired initiation often show a frustrating gap between the time they are given an instruction and the time they actually acknowledge it or start to complete it. It can make a child look oppositional even if it's really a processing glitch.

Hmmmm... well, not necessarily true that task initiation is uniquely correlated with EF deficits. There are a number of other explanations which involve anxiety directly.

Significant socially prescribed perfectionism can trigger task/performance-avoidant behaviors (basically, procrastination and anxiety).

You can't "do it wrong/imperfectly" if you don't do it at all, basically.

BTDT, this is precisely the pattern that we see in our DD, who has no other indicators of anything non-NT. But those things can reach a level that they'd lead to a (mis-)diagnosis-- probably of ODD/ADD-inattentive. Neither of which is at all applicable when separated from the anxiety and perfectionism. Things which are not subject to objective or subjective "grading" or standards, we simply never see this.

The thing is, the "punishment" for non-compliance has to reach a point where it becomes > the 'reward' for not risking failure/taking action... and that can cause delays in "processing" directions/tasks or starting them. What I realized at some point is that what my DD is actually processing is which is the better alternative-- to do what she's being asked to do? Or to refuse and not 'risk' imperfect performance? Lots to consider when making that determination, including who you're dealing with and how they are likely to respond to a refusal, what other stuff you'd like to be doing, etc. You'd think that it would be easier to just do what you're asked, right? But apparently not.

You really hit on a big point there. Also, since perfectionism type anxiety often has some self-loathing mixed in, punishment can also be a relief because it reinforces self-concept. Doing things at the last minute also means you can blame failure on the procrastination.

so true! with my kid, the key to cutting through the perfectionism turned out to be explaining how much more her brain grows when she makes a mistake, vs. when she gets something right vs. when she doesn't try. her true currency is apparently her own development (!)

it's not a panacea, but it has significantly improved the cop-outs in the past few weeks and we're hoping it will eventually translate into a new sense of resilience and thereby reduce the self-loathing, which is just... the worst.

How does he recommend you treat the anxiety? Certainly CBT should help. Medication?

DeeDee

Just a thought,
and my own opinions of course, and all that....

but if the teacher reported all that "negativity"- do they then in course of the day perhaps somehow convey their thoughts to your child? I mean, if a teacher thinks she showing Conduct Disorder issues- which btw is VERY serious and many think the worst pediatric mental illness to be diagnosed-- (((I am currently learning all about ODD and Conduct b/c my DS6 BF is very ODD/adhd and possible Conduct in future if current issues not dealt with- and it is scary stuff

ok, so if Teacher etc, think such thoughts- your child may pick up on this and of course she would have cause to be upset/anxious- what the adults at school are thinking, may affect the way they treat her, respond to her, etc etc!

DS6 picked up on the teacher felt he was "stupid" b/c she wouldn't teach him new things. Fact is she came across this way to him, and to me- She basically doesn't feel a child who is Autistic can also be possibly gifted.

so again, that's my opinion, but I just feel-- it can't possibly be helping your child if this is how the adults at school observe her to be. I am assuming they "observed" her, and wrote their observations down?

(((interestingly enough, DS's BF's teachers all wrote wonderful "observations" down, so yes, all the problems were sort of listed, but they "loved having him in class" yadayada and he is adorable kiddo but neuropsych felt that they were not Objective ENOUGH! compared to what they finding with kid.)))

my point I was trying to make above was that I'd be concerned if teachers saw such things, and Dr. isn't picking up same stuff, or at least contributing to the long list of Dx they could be, and

if your dtr is anxious? then if she picks up on any of it, even the very subtle bits... this could just increase her own anxiety ?

and the giftedness part comes into play with many are more sensitive, so that itself increases the anxiety levels.
idk.

Sorry if I am completely off base.
Just a thought as I said....
I will go finish gardening!

Was there any suggestion that this might be the result of inappropriate educational environment/fit?

Seems odd that it's so highly situational. I guess I'm wondering if that isn't a red flag.

We chose not to take our DS10 out to HS. He was very difficult as a kindergartner, tending to melt down, act on impulse, be off track, focus on his own interests, distract the class etc. But we wanted him to learn the skill of interacting with others in school and elsewhere. We wrote tons of behavior goals into his IEP and made sure they were worked on. At 10, he can participate meaningfully at school, has friends, and is doing pretty well overall. We are glad we stuck it out, even though it meant a couple of impossibly hard years early on. Had we homeschooled him, he would probably not have learned all these soft skills that we believe will be necessary for him to hold a job down the road.

Moomin, is your DD in public school? If so, have you started the "educational evaluation" process (called RTI or ETR in most places)? I would bet that if your DD is going to master these participation skills, she'll require management and direct instruction in those skills, as well as sophisticated thinking about how to make it worth her while to participate. (For that job, a behavioral psychologist can be useful.) An IEP is probably necessary in order to get those services deployed in a school setting.

DeeDee

That's the key, I think. We can get a lot of things for DD because she has a 504 plan. Now, some of those things aren't things that would garner any accommodation otherwise... and have, simultaneously, NOTHING to do with her qualifying condition...

What that means, unfortunately, is that without a qualifying diagnosis or evidence of impairment that impacts major life activities, you may be relying on largesse alone to mitigate the poor fit.

It's not how it should be, for sure-- because if your neuropsych is correct, this is pretty profound impact from a situation that the school is setting up, but I'm not sure (short of an IEP/504) what you're going to be able to do about it. KWIM?

Some anxiety diagnoses can be qualifying for section 504-- but the impairment probably has to be a lot more global.

We're sort of moving in this direction with DD. There is an additional complexity with her, and perhaps your DD is the same, in that she frequently does not volunteer her actual concerns unless painstakingly and lovingly prodded to do so. Also, she does not usually "look" anxious in the sense that I conceptualize anxiety, which is a child who is shaking, crying, and refusing to approach.

For instance, the other day she was being a royal PITA about an arrangement we had made to switch cars so that she would ride up somewhere with her father and ride back with her grandparents, while her brother did the opposite. She decided she didn't want to do the switch on the way home, and argued our ears off with reasons why this was all right and we should change our plan (her brother did not wish to change the previously arranged plan).I finally got her to tell me what was at the root at this after oh, 15 minutes of angry protestations, but I had to pry it out of her. She had heard an offhand remark, not intended for her, about how her grandfather didn't know the way and didn't have a map, and was therefore worried he would get lost (she hates being lost). Once I was able to adequately reassure her that this was not a concern, no issue remained and she switched cars.

But she DIDN'T TELL ANYONE THAT THIS WAS THE PROBLEM! Instead she aggressively confronted us--I don't want to do the switch, I changed my mind, I'm not going. The behavior looked ODD, or something other than anxiety, anyway. Even when I asked--why don't you want to switch?--she would not initially explain. I had to really work it out of her.

What a lot for you to process, Moomin, although it's more like the other shoe dropping than not knowing a shoe might drop. When we've battled with the school and gone through the testing, I think we're already somewhat prepared for the fact that the news is going to be a mixed bag.

On the bright side, if there are executive functioning issues, they don't seem to be intense enough to deeply dampen her scores. My kiddo's came out so low on one test that the neuropsych tried to tell me I should prepare him for manual labor-type careers - and then wondered why I reacted the way I did.

In all of this, I think the thing I come back to is that she's five and has only had a handful of years on this earth to figure out how to cope with a world that is often very much at odds with the way she thinks and feels and processes information. I think the suggestion for therapies is probably very spot on. And time does have a way of buffering; what may seem insurmountable to you now may be old hat in a few years.

I let my kiddo have a lot of Yellow Bus Fever days when he was in his early years of elementary school (as in the "fever" passed when the yellow bus passed by). While our kids need to be taught routine and responsibility and all those excellent traits kids learn by being in school, sometimes it is just too much to expect kids with 2e issues and who are in a poorly matched environment to cope all day every day. I found when I let him stay home on days that he was overwhelmed, he was able to do better on the days he was there. It can bite you if you don't negotiate agreements, though - I always negotiated a commitment about going the next day if I let him stay. He knew he had to live up to the bargain or the vacation days would end.

We have had similar type incidents in the past with our DS. Fortunately, he will tell me pretty easily but he will not tell others (like school officials for example!) and he would look 'ODD' to them - he's petrified of getting in trouble yet he gets in more trouble not explaining himself! I tell them he is never oppositional without a 'good' (actually usually pretty darn good) reason that may not be immediately obvious to you. I can always get it out of him so call me. He is MUCH better these days and I honestly think it's due to his underlying issues being supported, accommodated, remediated. It's weird the two don't seem related but they are ... The more proper support and proper remediation he gets (fixing his vision, accommodating his writing disability), his anxiety melts away all over - across all aspects, ykwim? Anyway, no real advice just have been there.

ETA: DS does have a anxiety diagnosis

You are so lucky to be able to do this. I really wish I could not work every day so my sons could stay home every now and then. I let my son stay home last time I was sick but obviously that is pretty rare. Oh well.

Actually...I would advise against Waldorf for a child like this. While my kids have not gone to Waldorf schools, I am personally familiar with them and they are rather more dogmatic and rigid than they appear. There is a lot of complex philosophical structure behind the seemingly natural/hippie Waldorf environment, and their basic beliefs are not friendly to an academically oriented young child.

I see this (through my ASD lens, of course) as a blend of anxiety and a perspective-taking glitch. She did not seem to know what information you needed in order to understand how she felt. We have this issue routinely; DS10 is gradually getting better at understanding that certain pieces of information are missing from other people's heads, and that if he offers those, things in his head make more sense to the people around him, but it hasn't been straightforward, and we've had a lot of incidents like this...

DeeDee

No, she knew we didn't know how she felt. She didn't want to admit that she was worried about it because she was embarrassed. She dislikes appearing weak, but doesn't mind other people seeing her as angry. For some reason, she considers anger okay, but fear is something she doesn't want people to know she is feeling.

Ultra, your DD is fascinating...

DeeDee

totally second this. we looked at a Waldorf school for our girl, and practically ran out the door when the principal casually mentioned that children under the age of 7 are only capable of learning through imitation and should be actively discouraged from reading and writing.

er... no.

Ditto what doubtfulguest posted. Our local Waldorfian's were horrified (horrified, I tell ya) that we had forced* our poor sweet little girl to read when she was just four...


*their term, not ours; obviously in their worldview, such a thing was both unnatural and probably even abusive, and CERTAINLY wasn't child-led... This was our signal to RUN.

DeeDee: She is SO HARD to figure out! OMG. "What's your concern?...okay....any other concerns? Is there anything you feel anxious about? Anything else you might be worried about? Could it be.... (WILD GUESS HERE)" has been working sometimes. Only sometimes, though.

I don't like trading in stereotypes, but in some ways she is very very....Mars? She has no trouble externalizing--except that she never hits. Expressing anger--sure, why not? Hostility--she's great with that. Vulnerability...she would really prefer not to be vulnerable. She has a lot invested in being tough. She loves bugs, snakes, scary rides, etc. She can hike for hours without complaint and does not feel much physical pain--although if you have to remove a splinter, look out.

I do still feel she is mildly impaired on perspective taking as well. However--boy, oh, boy, is she turning into a great liar.


Sorry. Threadjacking.

This is going to be very Waldorf school-specific, same as not all Montessori schools are the same. Also not all gifted kids are extremely academic - not even EG/PG kids. Kids like my ds sometimes have personalities that are more into inventing, creating, experimenting and thinking outside the box than they are into sitting down and zooming ahead in reading or math when they are in early elementary. I've known similar kids who've fit in well at a local Waldorf - *but* again, it depends on the Waldorf school. And you also wouldn't want to send your child to Waldorf if *you* as the parent are really bought into feeling you want your kid to be breezing ahead in reading/math etc because Waldorf isn't going to be teaching those things specifically in the early years.

I think that ultimately what helps students the most who are challenged with anxiety etc over school is not so much the school philosophy as much as the teacher-student ratio (smaller is better) and having a kind, caring teacher staff who really want to pull the child in and integrate them with the class, make them feel loved, safe, and a part of the "team" that makes up the classroom or student body.

polarbear

Montessori is a quasi-meaningless label at this point, I believe, though perhaps you can get an accreditation? I think the Waldorf label is much more tightly controlled.

It is unquestionably a core part of Waldorf philosophy to believe that children who learn to read before losing their first teeth are unbalanced and living too much "in the head." There is a really complex philosophy and the teachers all go through a long and exhaustive training that IMO is hostile to children who develop asynchronously. I vaguely considered sending DS to a Waldorf preschool--I didn't at all care if he was taught anything about reading or math at preschool--but could not reconcile myself to the idea of sending him someplace where his basic mode of development was going to be viewed with suspicion or seen as inherently dysfunctional.

I would also caution that Waldorf schools aren't philosophically neutral, so parents should be aware of the anthroposophy ideology that underlies the Waldorf method.

I agree with ultramarina that this philosophy could be quite damaging for young gifted children. Anthroposophy ideology is based on a form of karmic reincarnation and could falsely ascribe friction between students and school administrators' rigid practices to being the child's due from "another life". Particularly for a vulnerable child, I would steer clear of Waldorf teaching.

I think "Waldorf inspired" (not accredited or whatever their official stamp is) could easily be quite different. DD went to preschool where they incorporated some Waldorf elements (along with some Reggio and Montessori elements) and it was fine. But if it is an actual Waldorf school, with teachers who have been through the training, I would be wary. I actually think there are some admirable and appealing things about Waldorf, btw, but it also seems quite dogmatic and rigid. It's important to understand that at its core, Waldorf is a religious philosophy.

I am, as always, approaching your non-autistic DD with my autism toolkit, but here are the tools I see as useful.

1. Ask the school for a Functional Behavior Analysis done by a Board Certified Behavior Analyst. They should agree to this; they do not want disruptions to continue any more than you do. The BCBA is the person best equipped to take data and notice all the trigger situations that create anxious/oppositional behavior, and to set up a plan to systematically change your DD's reactions in those situations. They work precisely on that moment between anxiety and opposition that you have identified.

2. Consider private ABA (Applied Behavior Analysis) therapy, again with a BCBA. These folks do serious behavior modification in a way that works. This should be coordinated with your CBT program. The CBT works on the thoughts that aren't useful, the ABA works on the behaviors that aren't useful. Some practitioners do a blend of ABA and CBT, but this is rare IME. Neither is a fast fix, but I would bet that ABA is faster for a 5-year-old.

3. You need more than a 504, you need an IEP. I think this because your DD will need extra services to work on generalizing her new coping skills and newly learned behavior strategies throughout her day. The FBA would tell you at what times of day she needs this most; a special educator deployed specifically to prompt and reward the desired behaviors is the main way this job will get done, and you could then fade that support as soon as the skills were mastered. As long as she finds her coping strategies more rewarding to her than doing what's desired by the adults around her, it will be very hard to get anywhere.

4. I would talk with a developmental behavioral pediatrician about anxiety meds. For some kids (including one of mine) relief from anxiety improves everything and radically reduces the (seeming) oppositionality. It can truly be night and day. For my DS, anxiety meds gave him the ability to access the behavioral therapies we have used; without the meds he was in fight-or-flight too much of the time for any of it to be useful.

To be frank, I don't see all this as "slightly 2E." Maybe from the testing perspective she only measures as slightly 2E, but it sounds from what you write as though she is always on a knife's edge of being too distressed, and it sounds as though it affects her throughout her day, nearly every day. I think that after you start addressing the anxiety, you will be able to get her to the point where she realizes that the more advanced schoolwork is fun; but I'd work on the anxiety first.

DeeDee

I suspect that the district will shut you down if you make noises about an IEP... so don't discount the idea of a 504 plan on the basis of thinking that the one thing is "more" than the other. By all means ask if they'll consider an evaluation under IDEA, but I wouldn't make a big deal if they think that it's more of a 504 matter. The accommodations in a 504 plan don't necessarily have to be any different than they would be in an IEP, and they are every bit as mandatory.


The two things are just different from one another in terms of intent-- IEP is about educational benefit to the individual student, and 504 is about making a level playing field so that the child has the same opportunities as unaffected peers. Many districts see IEP = "special ed, different classes/placement" and 504 = "everything else" in terms of qualifying student needs. That's not right, necessarily, but unless you have a diagnosis that is specifically on the list of qualifying conditions, with clear history that it results in IEP's in a variety of educational settings, well, then a 504 may be the most probable outcome. (Parents whose kids are on the spectrum may not be as aware of this since most districts automatically qualify kids on the spectrum for IEP's.)

That said, it does sound like you have some compelling evidence to support qualification on that score. Major life activities impacted would be learning and social interaction.

The nice thing about a 504 is that it is tied to ADA, not IDEA-- so it actually has broader applicability outside of school settings. A 504 can fade in/out in terms of supports/accommodations as well as an IEP can.

I do think that DeeDee has given you some good recommendations. Know that some kids just struggle with anxiety more than others-- it seems to be something about the way that they are wired, to worry internally about things, but you can modify how they cope.

We've worked on putting anxiety into physical outlets-- playing the piano, walking the dog, working with one of our DD's animals, pulling weeds, that kind of thing. It's partly imagery (CBT) and partly about developing a healthier set of coping skills behaviorally by substituting an adaptive behavior for a maladaptive one (ABA).

We've not resorted to medications. That's my personal bent, though-- I really see psychoactive medication for pre-adolescents as a very very last resort. It's not that I'm against it unilaterally, but that I think that it's more important to try to address things other ways first, because those medications, even fairly short-term, do have more-or-less permanent impact on neurotransmitter function in the midbrain.

I also firmly believe that in a child for whom the anxiety seems tied to specific environments (school, etc.), the answer is probably not "this is a dysfunction" so much as "this is a response to an environment which is somehow inappropriate for this individual" and the answer needs to be different, as well. That's where an IEP/504 can come into play-- to flex that environment in some specified and predictable ways in order to allow the child to experience an educational environment which is as accessible as it is to any other student in the classroom. Ratcheting down the fight-or-flight is definitely the way to make progress in shifting the learned maladaptive responses. The other trick that we've learned over the years is to try to do most of the "work" in changing DD's responses... during the SUMMER months, when the natural anxiety-stimuli associated with school are not present. It's much, much easier then.

Lovely.

My DD is 9. However....she has been this way forever. However and however again, I feel like we are just starting to figure her out. You're much farther down the road than we were at 5.

FWIW, her behavior in school was better than your DD's, but her behavior at home was worse, from what your describe. Her school behavior improved as she got older, though she still is hardly known for being a pleaser, and it takes a good, experienced, sensitive teacher to handle her *well.* She could, and did, really run rings around some of the young, uncertain teachers at preschool. The preschool suggested that we have her evaluated for giftedness and "other things" at age 3.

She has been extremely impatient to become an adult pretty much since birth. The other day she was given a consequence (weed pulling, actually--we do give her physical chores as consequences and it works well) for being disrespectful and said something like, "You're all wrong about me and you always were. One day, I'll leave this house, and you'll see what I can become."

Whether or not a 504 or an IEP would be a better solution for a situation like this can depend on the school district. Anxiety disorders qualify students in our school district for IEPs (under OHI), as well as ADHD and ASD. What services are offered under a 504 or an IEP also can very between school districts.

polarbear

Absolutely true, that.

What you normally can't get under a 504 is any kind of services that require staff time. Just accommodations. (These days this depends on where you are, and how RtI is being implemented; it's complicated.) I think one should use experts to figure out what's truly needed to make school workable first, and then see what kind of plan will suffice.

DeeDee

What do her teachers say about this ? My kid had a very high self-esteem, even in the face of great frustration on the part of his teachers when he was in preschool. He would not escape, but he would pretty much ignore the teacher (or have an explanation of why he is doing what he is doing) and does what he wants (basically, not follow the process steps as outlined by his teacher, and would pretend play with the materials). His teachers kept saying he is not learning that his behavior is not conducive to learning. However, despite that, he learned a lot (started reading prior to age 4, could count to whatever number in the 100 thousands, could accurately tell you what any number was (like 234,768) etc. Now that he is older, I have asked him about it and he told me he disliked being told what to do and how to learn. He still does, to a certain extent, though he has tempered it down quite a bit.

Nodding my head sadly. I have not always done well in this regard. DD has seen all too well the way she can reduce me to frustration, anger, and, occasionally, tears. I know it scares her. But holy CRAP, she is one.powerful.little.being.


Great idea. Service is very meaningful for my DD. She also is extremely connected to animals and nature. DD also responds well to responsibility, although it can be a tricky balancing act to find the *right* responsibilities. Unfortunately, she is not the kind of kid who gets chosen by teachers for special responsibilities due to her nonpleaser personality and unpredictable tendencies. Last year's teacher got it anyway and gave her special jobs, but this year...noooo.

ETA--regarding this:


YMMV, but DD's self-esteem seemed fine, even a little inflated, at 5. At 9, it is low. I'm not sure what changed other than maturity and possibly just years of negative experience. Like your DD, she "blows over" quickly--it's the rest of us who are struggling to recover while she is often quite cheerful after the incident "burns out."

If manipulation is a problem, I highly recommend the book "The Manipulative Child," which I think I've probably mentioned before. It's very eye-opening just in terms of being able to RECOGNIZE and face those situations in which our kids are deliberately (if pleasantly/passively) manipulative.

My DD is another Zen Master at manipulation. It's as natural to her as breathing, and we've done a lot of hard, hard work to make her more self-aware and give her other options for managing her need for control/autonomy, encouraging more direct/assertive communication, etc. Unfortunately, the world conspires to lead very bright girls down that path of becoming manipulative, because it's how they tend to get the best results with most situations; cheerful covert manipulation over assertive problem solving. It's part and parcel of what they learn as HG+ females, unfortunately. Nobody takes them seriously enough to listen to them, so they resort to other means.

What is scary is that they KNOW that they are just children in some ways-- so the ability to manipulate/coerce/persuade adults against those adults' natural inclinations is pretty frightening stuff. DD never respects an adult that she can manipulate-- this was a HUGE problem when she was much younger. Probably this peaked about age 6.

We worked at developing compassion alongside theory of mind, and emphasized that other human beings have the same rights to autonomy and control-- ergo, it's WRONG to use passive-aggressive methods, even if it's easy/possible.

How refreshingly self aware your DD is. What a gift.

One of our most powerful motivations for helping DS with both his anxiety and his behavior issues was that by 2nd grade he had well internalized the idea that he was a bad person. He had some teachers who really made this a big problem. He was miserable.

Finding out the name for his neurological difference was extremely important for him-- the other available names (weird, bad, disruptive...) were really not good. Once he knew that it wasn't his fault that he was struggling, he was so relieved, and we could work together to make things better for him. Frank talk about challenges, including their names, is very important IMO.

I don't see this form of labeling a disability as pathologizing at all-- DS definitely sees it as being aware of a difference, and learning to not let the difference hold him back.

DeeDee

Agree. My DS10 is much happier now that he understands that offering the world expected or unexpected behavior has to be weighed carefully. He likes having a choice. I like his understanding the consequences of the choice and his ability to make the choice consciously, rather than because a particular response feels like his only option.

Agree that 5 is too young to have all this down pat if it doesn't come naturally; but 5 is not too young to start laying the groundwork for it and removing the obstacles.

(The expected/unexpected language is from Michelle Garcia Winner's Social Thinking curriculum-- we never did it formally but I found some of it useful in parenting a kid who does unexpected things.)

DeeDee

Forgive me, because I think you've addressed this already, but is this your daughter's first preschool environment? I seem to remember there was another? Has she ever been in an adult-led environment that worked for her? I was thinking about your DD and mine--my DD was seen as a major problem at preschool till she moved up to the 4s and 5s class where a different, better teacher had her. It was night and day.

I also wonder if they have tried any behavior modification systems with her. What's her currency? Does that sort of thing work with her at all?

BTDT, totally, my sympathies. We have sometimes had success with "low value currency"-- that is, something that's just barely worth working for, but doesn't feel life or death. ex. not working for video games, which DS feels strongly about, but working for the option to choose what's for dinner, which he doesn't think is a crisis if he doesn't manage it. This is hard to calibrate.

If the school is supposed to be doing behavior mod, it sounds like your DD is kind of out of their league? From your descriptions it sounds like they have given up and are letting her escape when she wants/needs to. I wonder if you could get another opinion (from a BCBA) about first steps to change that situation.

DeeDee

It sounds like there's basically nothing wrong with your daughter. She's reacting badly to the environment(s) she's being put in. The environments are the problem.

Ouch.

Well, I can't say what we'd have done with DD here, because she was totally non-disruptive (almost shy/fearful-seeming?) with other authority figures at this age. Well-- until she got to know them well enough that they were in her inner circle. To wit, I have frequently joked that having DD "trust" you that way is probably best viewed with a somewhat Dante-esque perspective, and moomin's DD is a good example of why. Her style was just different-- less overtly disruptive, and more passive. (I've mentioned the nickname "Little Ghandi" though, yes?)

She's fine until you cross her agenda... which on average, in a novel environment, is pretty broad and flexible. When she has HER agenda, though, and someone crosses it or interferes with her ability to pursue it, watch out.

It's not really about autonomy. Not about control. Not about anxiety. Not about rewards, not about punishment, not even really about perfectionism, so far as we can tell. What is it about? Who knows. But behavior modification is a non-starter with her because she is SO cagey about just what her currency is. And it seems to change-- just when you think "AHA! I know what matters to you!" then she finds a way to supply it independent of the 'system' (and justifies it as a basic need, or something), or walks away from it emotionally to deprive us of the lever to modify other behavior.

Sounding familiar?

Sounds like learning is her currency, Moomin. Unfortunately, as you likely already know, promising that she will get a reward for compliance is something that you don't have a ton of control over a lot of the time, and when you're wrong, she loses trust in you (and judges the entire system to be corrupt/unfair).

We did this dance with DD for many years before we figured out that we were setting up an oppositional relationship with her that we didn't even control OUR end of-- that is, we'd promise "do your work and it will get better, you'll see-- new, shiny! Exciting! Next year..." but then it didn't. This lasted for about five years, but each one got increasingly worse, both in her anxiety, her perfectionism, and her escapist/avoidant/defiant behavior.

We had to step back and let her know that we are on HER side, and that we just want her to have tools to be happy in a variety of settings and under a variety of expectations.

I'm not sure that I have any advice for you here... but definitely don't promise what YOU can't deliver, even if you know/suspect that it would be a great currency for her. You personally, I mean. I've been down that road, and it goes nowhere good.

It's really all about unmet needs, when you get right down to it. Some kids do NOT respond well to environments that do not meet a primary need for themselves-- and some of those needs are quite unconventional/idiosyncratic in HG+ kids. A smaller subset of them are furtive about even digging into what those needs actually are. Again, I have one of these. She's afraid to let anything matter "too much" to her, because she cannot stand to "lose" if she plays the game, and even moreso if it feels unfair to her because she did what was required and STILL didn't get the proper reward/payment.