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Nervous...What should I expect?


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So Anna's neuropsych eval will be on Monday. It's an all-day evaluation, and I have no idea how she's going to sit through it, even though I know they often deal with difficult kids, and that they'll have breaks. 

 

I'm also worried, since she tends to be a perfectionist and really have a hard time when she can't get something right. Those of you who have been through this with a young ADHD child, were they able to get through it without having a meltdown? Maybe being unable to complete some of the tests is one of the determining factors  :mellow: but I'd really like it to be an actual test, not just results due to noncompliance.

 

Also, I'm trying to figure out how to explain the test to her, so she'll have some idea what to expect. What did you tell your kids? I know not all evals are the same, but can you give any examples of the tests they ran for your kid? I'm assuming they'll do the T.O.V.A. (which I KNOW she won't sit through. Twenty minutes of clicking? I wouldn't be able to do it myself!) But what else? Is it mostly fun? Mostly boring? So challenging they get frustrated and upset?

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We went through this process recently with my 7 y/o. My biggest piece of advice would be to bring snacks, drinks, and some toys to play with during breaks. Our appointments were broken up--consultation, IQ testing, achievement testing, ADHD interview and ASD screening. 

 

We started out sitting in the office and talking about what was going on--areas of concern, areas of strength. P jumped in the conversation, which actually helped the psych see the behaviors of concern. My ds is also somewhat of a perfectionist, but the psych explained to him that we was not supposed to know how to do everything--the tests are made from kids ranging from his age to teenagers. She was really good at working with him, and I think that she got his best effort out of him nearly the entire time. She didn't frame it as a test--it was a series of games and questions to see how his brain works. :) 

 

DS thought the IQ test was kind of fun. He especially liked making patterns with the red and white blocks. The WISC has a lot of small sections, and ds had a break after every couple of sections. You can look up the WISC and see the subtests. 

 

We didn't do a test for ADHD, but our psych used a standard diagnostic interview, plus her observations of his behavior during testing, to make the diagnosis. We did fill our a questionnaire for ASD screening, then discussed the answers.

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What should you expect?  

 

Weight gain, chocolate cravings, extreme fatigue, passing out, a strong need to go eat piles of italian.

 

I have no clue what your question is, but anything you're feeling is normal.  We've btdt.  It's awful.  Be good to yourself (and her) and do good, peaceful things that make you happy.  Get lots of sleep (you and her), and plan on her needing snacks and a good long nap afterward.  

 

The psych eval itself should be fun though tiring.  You'll make it through.  Just be good to yourself.   :)

 

The tests?  Some games, some writing, some math, something at the computer that will be boring as the hills, some things with toys to stack or arrange.  But it will mostly be fun.  Just set her mind at ease.  The psych will explain anything further.  Really, you don't want to hyper prep her.  If she's going to have anxiety with it, you want the psych to see that.

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OhE, you don't want to know how much weight I've gained since this all has started...

 

 I'm not going to tell her about it till Sunday, hoping she won't think of it as a big deal. She's young enough that she won't realize most kids don't go through this...

 

Since I haven't really discussed the ADHD with her yet (waiting till we get the results) I like the idea of telling her the questions are to see how her brain works. (Although that might make her anxious and worry she's not going to be smart enough? I don't know...I've been using the term "supercharged brain" with her, and now she probably thinks that means she's brilliant, haha. But she may feel stressed about proving it...) Prepping her by saying she won't be able to answer many of the questions, that some of the tests are meant for much older kids, is a great idea.

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We broke up our testing over 2-3 days so as not to stress DS.

 

Don't make a big deal out of it. The tester should make every attempt to build rapport with your child. Pack a lunch and plenty of snacks. DS has been np tested 3 times. The 2nd np would not allow us to leave my DS and come back, so I packed tons of food, UNO cards, a book, and DVD player for my then 3 yo.

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Each NP exam is going to contain a slightly different set of tests because no two children are going to come in with the same symptoms and previous testing results. An IQ test and an achievement test is pretty standard.

 

For my DD, the NP did a Leiter non-verbal IQ test, a couple of non-verbal subtests from the WISC, the Children's Memory Scale, a few subtests from the Woodcock-Johnson Achievement test, the Bracken Basic Concepts Scale, the Rapid Automatized Naming and Rapid Alternating Stimulus Tests, the Beery-Buktenica Developmental Test of Visual-Motor Integration, the Physical and Neurological Exam of Subtle Signs (this appears to be another motor skills test), and an adaptive behavior and an EF rating.

 

The ADHD diagnosis was not in question so the NP did not run a TOVA or any other attention-specific tests.

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Ah, more tests to look up. Thanks, Crimson Wife!

 

I'll admit also that another big part of what is making me nervous is dread at seeing the extent of the issue, even though I KNOW it's an issue I don't really see the actual lack of attention much in our schooling and every day life. Fearing  something that I already know isn't logical, but there it is. Seeing a printout proving how far she is from other kids her age, getting that confirmation in writing, is going to hurt.

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And my husband just told me we're going to go see my in-laws over an hour away on Sunday. She always gets riled up on long trips, we probably won't get back till 9 or later, and I'm sure she'll have a harder time falling asleep because of the long trip and excitement. Seriously, why didn't he check with me first?

 

/vent

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OhE, perhaps try to let it come more naturally. With my oldest, I don't plan discussions. They just come up naturally and I let my youngest listen in. Very often you think he is not listening but he is. We openly talk about autism in our home, some of the challenges, some of the differences between how it presents between the two boys, and coping/ adapting skills. At this age I worry that too much of a direct discussion might hurt their self-esteem. So I put focus on the positive, what do we do about it.

 

Other family is going to be there as well, they'd been trying to get together for awhile and only get to see Anna every few weeks. 

 

I don't want to speak badly about my husband, I know he adores our daughter. It just upsets me that I've been in charge of countless hours of researching, figuring out everything we need to do, setting up and going to all our appointments, reading everything I can, doing the therapies and stressing over it all, and something this important doesn't even seem to be on his radar.

 

ETA: Sorry to vent. It's been a difficult week(/month/year.)

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I would seriously either get home much earlier or find an alternative. To spend all that time for a Neuropsych eval (and likely money), will be for nothing if the conditions are out of normal. And the tests can't be repeated for at least a year I think even if there are bad testing conditions.

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I did just write him to say we're going to have to leave by 7 at the latest (which will mean getting home by 8:30.) Still not ideal, and I'm just so frustrated and feel alone in this.

 

Normally I wouldn't even go with them, since Sunday is typically my "day off," but I'll go to make sure we really do get her out of there. I'm probably going to look like a b*** for pulling her out the door right after we eat and, knowing dh, I'll probably have to almost yell at him to get him to leave on time, which will stress her out even more.

 

Maybe I should give her a small dose of melatonin to help her get to sleep?

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I did just write him to say we're going to have to leave by 7 at the latest (which will mean getting home by 8:30.) Still not ideal, and I'm just so frustrated and feel alone in this.

 

Normally I wouldn't even go with them, since Sunday is typically my "day off," but I'll go to make sure we really do get her out of there. I'm probably going to look like a b*** for pulling her out the door right after we eat and, knowing dh, I'll probably have to almost yell at him to get him to leave on time, which will stress her out even more.

 

Maybe I should give her a small dose of melatonin to help her get to sleep?

Do you have two cars? I think it would be worth the extra gas just so that you could leave early and not have to wait around for him.

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I wouldn't even go Sunday.  You're probably paying thousands of dollars for that testing starting Monday.  Those people can see her another week.  Just say sorry, we have an important appt Monday and she has to be rested.  

 

 

I suppose you could try to be flexible and just say earlier, but in our case the kid would still be whacked out, overtired, blah blah AND you NEVER leave when you mean to.  

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Other family is going to be there as well, they'd been trying to get together for awhile and only get to see Anna every few weeks. 

 

I don't want to speak badly about my husband, I know he adores our daughter. It just upsets me that I've been in charge of countless hours of researching, figuring out everything we need to do, setting up and going to all our appointments, reading everything I can, doing the therapies and stressing over it all, and something this important doesn't even seem to be on his radar.

 

ETA: Sorry to vent. It's been a difficult week(/month/year.)

 

I think your dh is typical of very many fathers.  My dh loves the kids and loves to do things WITH them.  He is NOT into the researching their special needs, going along for testing or to the doctors, going for ER visits, or keeping track of when the countless appointments are.  I am sure that I could ask him to rattle of their med lists and/or doctors lists and he would fail.  We have that all written down for him in various places in case he ever needs it in an emergency situation.

 

He though is great on just doing normal dad stuff with them.  I have to keep reminding myself that just because he does it differently, it isn't bad.  I think God gave our children the 2 of us to balance each other out and give the kids a healthy balance of meeting their needs (more my area) and treating them as any other kids (dh's area).

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Thank you all...Well reading your posts helped me come up with convincing words, and was enough to make me demand that we leave earlier, even if we don't get to eat dinner with everyone. We'll be arriving right after lunch and leaving before 5. :) I'll sit in the back seat with her on the drive back to read her stories, which relaxes her and will put her in the right frame of mind for a restful night.

 

I think your dh is typical of very many fathers.  My dh loves the kids and loves to do things WITH them.  He is NOT into the researching their special needs, going along for testing or to the doctors, going for ER visits, or keeping track of when the countless appointments are.  I am sure that I could ask him to rattle of their med lists and/or doctors lists and he would fail.  We have that all written down for him in various places in case he ever needs it in an emergency situation.

 

He though is great on just doing normal dad stuff with them.  I have to keep reminding myself that just because he does it differently, it isn't bad.  I think God gave our children the 2 of us to balance each other out and give the kids a healthy balance of meeting their needs (more my area) and treating them as any other kids (dh's area).

 

 

I know you're right, thank you for this. And truthfully I don't think it really bothered me, or that I really thought about it until he made these arrangements. I need to be the one researching because trying to figure it all out keeps me from feeling helpless and lost in all this. But I've been so mentally exhausted and on edge trying to deal with the behaviors at home and figure out the steps to take, and worrying about the future. And realizing it hadn't even crossed his mind that today could be an issue was like a slap to the face, making me feel like I really AM alone in all this and the sole person responsible for helping this little girl. I know that's not logical, I know he worries too, but...when we discuss it he feels like his job is to reassure me that it's going to be okay, that she's wonderful and special enough to overcome anything put in front of her. (Another typical male thing, I think.) I know she's wonderful, and I know we'll get through this, but I need acknowledgment of how difficult everything is for us right now. (I know I need to tell him that's what I need.)

 

Sorry for rambling, like I said I'm just overwhelmed right now. This has become my life. (I think we need to hire a babysitter and go out to dinner just so I can get away and recenter...)

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Anna's mom, I suspect the husband thing is really common. Just yesterday I spent a bunch of time (hours) typing up information for our school to use during our IEP process. DH read it (took him just a few minutes), said, "this looks really good," and made one or two small suggestions. I admit I had a little voice talking inside my head, complaining that the major responsibility for dealing with these things falls on my shoulders, even though we are both the parents. I managed not to say anything, though :D . I did tell him I need his help copying and organizing documents this weekend. He's perfectly willing to do things like that when I ask.

 

Ottakee, I like your perspective. DH really is a great dad. We all have our strong suits! Considering that the vast majority of posters on the LC board are women, I think it's fairly normal for moms to lead the charge. Go moms! :cheers2:

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OhE, you don't want to know how much weight I've gained since this all has started...

 

 I'm not going to tell her about it till Sunday, hoping she won't think of it as a big deal. She's young enough that she won't realize most kids don't go through this...

 

Since I haven't really discussed the ADHD with her yet (waiting till we get the results) I like the idea of telling her the questions are to see how her brain works. (Although that might make her anxious and worry she's not going to be smart enough? I don't know...I've been using the term "supercharged brain" with her, and now she probably thinks that means she's brilliant, haha. But she may feel stressed about proving it...) Prepping her by saying she won't be able to answer many of the questions, that some of the tests are meant for much older kids, is a great idea.

 

If spiritual things turn you off you may not want to read the following. That's your warning.

 

I've gained ten pounds since a lot of our family stresses started in the winter. I've been exercising to keep my head on straight but it hasn't helped the weight. I've been feeling down about it and some other things, and praying very much for God's guidance, because I know I have to do something to get me out of this slump. Last night, immediately after one of those little moments of crying out to God, I stepped on the digital scale and got a message that I've never seen before. It said something like "overloaded". I moved it on the floor to make sure nothing was tricking it up, but it happened again. I'm not kidding! I'm about 143 pounds on a heavy day so that really shouldn't happen. Last night I thought maybe God is teasing me to make me smile. Today I think maybe he was telling me that I'm overloaded, not the scale. Reading the Bible last night and listening to the readings in church, I realized I'm holding grudges and have to forgive and let go. Maybe if I can do that, I can regain my peace....and lose the weight. It was so strange, though. Maybe it's just perimenopause making me feel grouchy toward people and gaining weight, and my scale is just broken. 

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Tiramisu, I think we all need scales or signs we can hold up that say OVERLOADED! so other people will notice too, lol.  And yes, stress does that to me.  It's the cortisol.  Can you go work it off with a bike ride or a vigorous walk or something?  Maybe a new PE regimen for your 4th grader that just happens to be what you need to do?  I was just reading that exercise helps tone down aggression in our SPD kids...

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Tiramisu, I think we all need scales or signs we can hold up that say OVERLOADED! so other people will notice too, lol.  And yes, stress does that to me.  It's the cortisol.  Can you go work it off with a bike ride or a vigorous walk or something?  Maybe a new PE regimen for your 4th grader that just happens to be what you need to do?  I was just reading that exercise helps tone down aggression in our SPD kids...

 

Interesting. Dh has been bike riding almost everyday this summer with dd. I thought it might be the bilateral thing helping her, but just the activity alone is probably beneficial.

 

All year I've been doing videos from fitnessblender.com, but this week the weather has been a little cooler and drier, and I've been walking for about an hour a day, thinking I should enjoy the outdoors. I need new running shoes, though. It might be a good time to splurge. I think just having the routine of doing something has been helpful.

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Well, she's in testing now. And they won't let me in with her because they don't want me interfering in any way. The doctor just came out to say she's not complying, having a hard time sitting for testing, so most of their diagnosis will just come from observations. This is really upsetting, I mean I make the same observations every day, I know what she's going to say, I don't need to pay $1,500 to tell me what I already know. I was really hoping for something more concrete.

 

I know that sort of behavior is diagnostic too, but I know how to calm her down and stop her from the hysterics and they won't even let me try.

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:grouphug: :grouphug: :grouphug:

 

Hopefully someone who has been in a similar situation can chime in. It must be very hard to be worried and feeling helpless. Is there an office manager that you can speak to about this while the doctor continues working with her?

 

I'd point out that I was reluctant to pay for testing that was going to be incomplete. If she doesn't calm down, I would not let her go all day like that (it's an all-day appointment, right?) but would insist that she be allowed to take a break to come and see you. When we had our NP testing, regular breaks were taken. They can note in their report that it required parent intervention for her calm down enough to participate.

 

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I think the best thing you can do is allow the doctor to observe.  Hearing a parent talk about something is not the same as seeing it.  The test administrators have been through this with other children, and know how to use the information they obtain.  I think the child's ability to comply is part of the evaluation.  Spending the money now to get started toward answers is worthwhile, IMO.  But you should be aware that you aren't going to get concrete answers to every question, maybe not even all of them.  The information collected today will be a start.  Then there may be medication trials, therapy, further testing or follow up sessions.  There's no easy fix. 

 

Bottom line, if you want help, you have to let people do their job.  If you are really uncomfortable with the treatment team, then keep looking for one that fits your needs better.  But, I wouldn't try to interfere with what they are doing, while they are trying to do it unless you feel it is putting your child at risk.

 

 

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Thanks...I did talk with the doctor about it, but they apparently need to see how she does without a parent in the room. They're letting her take breaks to run around the room, I guess, and gave her a snack I'd brought, and they're going to let her see me in 15 minutes or so (after2+ hours of testing) for a half hour break to eat lunch and run around the hospital...

 

Another thing that upsets me a bit, and may be upsetting her, is that I'd told her I'd be there with her today, so now on top of all this I'm worried about her feeling like she's been abandoned with strangers, so the anxiety may be ramping her up even more. Yes, I do feel so helpless sitting here knowing she's in a stressful situation...

 

Argghhh...I'll talk to the doctor when they come out and make your point about incomplete testing.

 

ETA: this was in response to Storygirl's comment, I'm tapping this slowly on my tablet and cross posted. You all make good points...

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She should be done in about a half hour. She's in now with the "tech" guy (whatever that means), and I had a brief talk with the doctor. He said all the results are going to be skewed because of the attention issues, that they're not going to be able to get an accurate assessment of anything because she wasn't able to complete most testing, so not to read anything into most of the results. I really wanted to get an idea of whether working memory and/or processing speed were an issue, but it sounds like it will be impossible to tell.

 

So this was basically pointless.

 

Except that, like you're saying Ottakee, the attention and distractibility issues are a sign she's in an even worse place than I suspected. She can attend pretty well to schooling as long as she's engaged, so I was hoping that meant the problem was more hyperactivity than attending issues. I asked the doctor whether she could give me a severity level, based on what he's seen in other kids, and he said, "I don't like to compare, but...yes, he doesn't usually see this much of an issue completing the testing.  :sad:

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I'm sorry it's been such a difficult day. I think you will not learn as much about her IQ as you'd hoped, but you will definitely know what's in the way of her learning otherwise. You already have a sense that she's pretty bright. Sometimes you get a piece of information at a time, act on it, and then learn more. I'm sorry it's not the cheapest way to go.

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You must be exhausted and frustrated. It will be okay. You'll be getting answers even if it didn't go as well as you'd hoped.

 

ADHD is most basically a working memory thing. So if attention was interfering with the testing, it will be interesting to see what the working memory score is. And I think you can already assume that she's brighter than any score will show. 

 

When you have the specific subtest scores, maybe the folks here can help you sort out visual or auditory weaknesses from them to get an idea of the next step, in light of what the np recommends.

 

:grouphug:  :grouphug:  :grouphug:

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What a rough day!  You're home now, sigh.  Were they doing it all in one day or do you have more days?  

 

You could negotiate for a follow-up in x number of months to rerun the WISC and whatever else once she's on the meds.  

 

I'm sorry it feels like such a failure, but, as the others have said, it's really not.  You took her in as good as she gets, with rest, with food.  She was herself, and the got to see it, in full form.  That's ideal actually, because, like the others said, it's not you saying BUT YOU DON'T GET HOW SHE IS AT HOME...  They SAW it.  

 

This whole process is hard and very emotional.  You're doing fine.  It's going to get a little harder even, and about 6 months from now things will have settled down, with you applying the results, making changes, maybe getting particular interventions or whatever, and things will get better.  This is just the very unpleasant road you have to go through to get there.  And it's the right thing to do.  Pretending it isn't happening isn't going to get her help.  They had to see it and they saw it.  It's going to be ok.

 

:grouphug: 

 

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Anna's Mom, we did not get a full neuropsych evaluation so I didn't feel equipped to give any useful advise. I just wanted to offer some :grouphug: :grouphug: It's hard! Things will get better though because you will find a way. Take a few deep breaths and remember to be kind to yourself. You have had a lot to take in in a short time. :grouphug:

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Although we did not have the same experience that you did, there was a test that DS11 could not complete because he just was not able to produce any answers. Not being able to do it was an important factor in his diagnosis, and knowing that he has such great trouble with that activity was in itself helpful information to me.

 

I just wanted to echo what others have said about the value of seeing the extent of her problems with inattention and emotional regulation laid bare for you and the professionals to see. Hopefully they will have some suggestions about how you can address those things, which is probably the most important thing for you to know at this point.

 

And I agree that if you try meds, you might repeat the testing a few years down the line and get the fuller picture that you are looking for. Ask the doctors when they would be able to redo the testing if you were to try meds. Could you bring her back in six months and have them run the tests again at a reduced rate? They may not go for that, but it doesn't hurt to ask.

 

For what it's worth, DS11 took the Woodcock-Johnson at a private school a couple of years ago, before he was medicated, and his attention and behavior issues were so prevalent that the school refused to admit him  :(  and highly encouraged me to get full evaluations for him. That was extremely painful. But it was exactly what we needed to push us forward to get him help. Four months later he had his NP evaluations, and the meds were working so well for him, that THEY COULD NOT SEE the ADHD issues during the testing. They still acknowledged that it was an issue even though it did not present itself for them, and they gave a lot of advice in the report about programs and accommodations for ADHD. But he was able to pay attention and behave for them during the testing.

 

Note, this was only four months after starting the ADHD meds. Maybe three.

 

So there is hope for you that your daughter can repeat the testing at a later date, after  some of her issues are more controlled, and get more helpful results for the other areas of concern.

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Thanks, all. It was so hard for her...Last night she said she "wasn't smart enough" to answer the questions, the first time I've ever heard her question her intelligence, and she was asking if she was "going to get coal in her stocking" for acting up and not doing what the doctor told her to do. (How did she ever even hear about coal in her stocking? I hate that threat...) I reassured her over and over, and told her what a brave, strong girl she was for going back into the room without me each time after she'd needed to come out in tears for a hug. And she WAS so strong, she never complained about it, just took the doctor's hand and resolutely went back in. Hopefully the reassurance sank in, it just breaks my heart and I wish more than anything we hadn't done the testing.

 

If nothing else, it reassures me that we're doing the right thing by hs'ing, because of course she'd have those same self-doubts when she had trouble in school. Here I can at least keep her in this safe bubble just a little longer...

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Hi Anna's Mom - Longtime lurker here - just wanted to offer hugs and say I hope you and your dd are recovering from the long day of nueropsych testing. I am taking my ds 8 - also with adhd, perfectionism, anxiety stuff, in for testing next month. It was helpful to read about your experience and I appreciate your being willing to share it. 

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Hi Anna's Mom - Longtime lurker here - just wanted to offer hugs and say I hope you and your dd are recovering from the long day of nueropsych testing. I am taking my ds 8 - also with adhd, perfectionism, anxiety stuff, in for testing next month. It was helpful to read about your experience and I appreciate your being willing to share it. 

 

:grouphug:  :grouphug:  :grouphug:

 

Yes. I've been blessed by so many people who have been willing to share here.

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OP, I don't know what conversations you have with your child.  But, she does sound anxious (I have one of those kids).  If I were you, I would be cautious about how much emphasis I put on testing, seeing doctors, etc.  Our child was older when he went and actually asked to go because he was having anxiety attacks.  But, my general advice would be that doctors and testing are a part of life- nothing to get worked up about or turn into a bigger deal than they are. 

 

If you are nervous or anxious about what is going on with your child, learn to shield her from picking up on that fact.  If you can't, get yourself help so that you can maintain calm and do what you need to do. 

 

In my personal experience, an anxious child will feed off of any irregularities in the moods of the people around him or her and it will just build and build.  We have fared much better explaining things more clinically- sticking to the facts.  :grouphug:

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Like MomatHWTK, I'd encourage you to de-emphasize things.  It's like when you give birth and you pee on the midwife or have a bowel movement.  Objectively, that would be bad, but in that moment, in that scenario, it happens, it's common, it's normal, it's expected, and it was NOT a big deal.  It didn't bug that psych and you are not disappointed in her.  You need to say these things to her.  You can't shield her from things, but you can let her know that she's accepted anyway, that people accept her and care about her even when she has a hard time, that everybody has a hard time sometimes.  

 

Honestly, it sounds like, in addition to meds, you need to get connected with a counselor who has experience with your dd's mix.  You need someone you can say these things to very honestly so they can give you feedback on how to handle it.  That  way it's totally private.  Some of this stuff we deal with is really ugly or embarrassing, and we end up with thoughts we didn't really mean to have.  Sometimes a spouse can talk those through and sometimes the spouse isn't the right one.  

 

So, no, you did the RIGHT THING by getting the evals.  Say whatever it takes to set her at ease.  Rest assure her of your pleasure, the psych's pleasure, that you know it was hard, you're proud of her, that many people have a hard time, that they didn't expect her to know everything.  Even criticize the psych if you want to, sure.  Tell her that some psychs give kids energy breaks every hour and this psych didn't, that next time you'll get her a psych who does breaks.  Don't let this turn into some thing where she's stuck and won't ever be willing to see a psych of any kind again.  Absolutely criticize him and validate her complaints if he was in the wrong.  My ds tends to get stuck, so I'm always concerned about that sort of lifelong conclusion he'll draw, lol.  If it objectively was bad, I'd rather he thought that first psych sucked and another one in a few years will be better, not that he's allowed to decide never again, kwim?

 

You HAD to have the information and you HAD to do this.  I'm sorry it's awful.  Give her a cone, do some nice things together, and in a week hopefully it will be a fading memory.  

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How old is Anna? I am sorry things were so rough for her but I am sure you will still gain some valuable insight into how you can help her. My kids have each gone through evals like this a few times. They both just had updated evals in the past few months. They are teens now and it goes easier now than the first time.Take care!

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