We received the neuropsych's written report today. Even though we were already familiar with the information it contains there is just something about seeing it all in black and white. With scores ranging from 99th+ percentile to below 1st percentile it really just defines 2E. I couldn't read it in one sitting - I had to keep putting it down. It felt like I was being punched in the stomach seeing JUST how tough a road DD has in front of her. There are so many challenges. In so many areas. I can't wrap my head around how this is going to work.

Has anyone else experienced this? Intellectually I know that I have already done the hardest part - getting her identified and tested and now having the school (finally) on track in trying to meet her needs. I have to just use these test results as a road map to make sure that her needs are being met in the best way possible. I just feel so awful for her - she is so sweet and so smart and such a special little person. How do you get over the feeling of Why Her? This is so unfair - she doesn't deserve it?

Looking for some BTDT words of wisdom...

The neuropsych report on DD8 was not too bad for me, but I know exactly what you felt from the OT report on sensory processing issues for both kids. I keep wondering what I could have done, and whether this is all my fault, even though I know it's not. It's really hard to wrap my head around it all. DD8 is struggling in school, and I am in dread of DS4 hitting kindergarten. He scored at the 2nd percentile on a test of fine motor skills! At the same time, he's such a fun, funny, sweet little person! I just don't know what to think.

My DS also had a score below the 1st percentile (receptive language). It's disheartening. It made me wonder how much of everything I've ever said to him has just flown over his head. For the most part he functions really well (excels at compensating) but geez... no wonder the poor kid can't concentrate sometimes.

Yes, that's a good way to put it.
Our 'news' was that our ds was 2e in a very difficult to define way, so issues, but not much hope the school would ever understand, and also that he was depressed, which was imo, the worst news. I was shocked that I would not have picked up on that...I mean I knew he wasn't happy, but I didn't know he was technically depressed.
Now we are homeschooling for emotional and 2e reasons, he feels pretty great most of the time, but I often wonder when this might come back up and when/if he goes back to school if "fit" will be essentially unattainable, as it was before.

It is exactly like a punch in the stomach, at first. It is overwhelming and hard to deal with. As a parent, you feel a little helpless and sad that you can't fix it. I remember crying a lot in the first week. Every time I looked at DD, my eyes would well up. I lost a lot of sleep, worrying how she would cope with all the challenges she was going to face.

It gets easier as time goes on. The shock fades and you get back to the business of working through each day as it comes. I try not to look too far ahead, to be honest. I focus on helping her deal with her current struggles and concentrate on keeping her strengths front and centre.

DD helps to keep things in perspective. She rarely gets down on herself now that she has her 'long list of troubled' identified. She says that she feels like a big weight has been lifted off by giving everything a name. It gives her access to appropriate resources and stops others from blaming her everything on laziness. I figure that if she can find positivity in all of this, than so should I.

Not to say that the mommy guilt and worry is gone. But, it does get easier to cope with. Hugs.

DS12 had scores in the 99th percentile for IQ and in the 2nd percentile for some fine motor skills. He was tested when he was about 7. The road has not been easy, and things got worse before they got better, but there's definitely been an upswing since he started getting help. He has had OT, learned to type, switched schools, began receiving special ed services, began psychotherapy, started ADHD medication, and got older. All of those things together have made things easier.

Hi Pemberley,

Yes, this is a difficult business. It will get easier. Here are my thoughts.

You have been through a ton of suffering and hurt together with your child. That's been awful. It is not your job as a parent to remove your child from all suffering, though you will continue to do what you can to minimize it. As I see it, your job is to help your DD learn to experience herself as lovable and capable-- which includes capable of coping with whatever comes. Her recent success with self-advocacy tells me that you and she are on the right track with that. I am learning to trust more that with our help DS will find and use his capabilities to find his way in the world. Our job is to assist.

(Of course you will continue to mitigate her anxiety and other sufferings in any way you can; I do not mean to minimize those, only to say you need to be realistic about your role there.)

One of the things that has helped me surprisingly much is to read a bit of the writing of parents of disabled children who are differently disabled from mine. This has not only helped me learn to think about disability as a part of human experience (remember, MOST of us will be disabled at some point in our lifespan) but also helps me to see DS's assets as well as his liabilities in clear relief.

For perspective and good writing of this kind, I like this blog:
http://elizabethaquino.blogspot.com/

Compared to many other disabled children, and many other children in the world, your DD is in good shape. She has tremendous intellectual gifts, and a parent who will lovingly and persistently move heaven and earth to educate her appropriately. She won't die of malaria or malnutrition, either. It is only if we indulge in perfectionist thinking that her disabilities are crises. It is likely that her road will be less straightforward than some, but she is an extraordinary kid, and I suspect that her road will also be ultimately more interesting than many. If you help her know herself and her capabilities, I think she will be far more than okay-- I think she will find a way to fly.

As a matter of policy, our family treats disability as a challenge-- it's nobody's fault, it's the hand you're dealt, but we are great problem-solvers and we will work with that. I realized how ingrained this was in our family culture when I recently became disabled; it hasn't always been pretty here, but this attitude can get a person through a lot of things.

I also try to make sure I am managing my own anxiety well through a variety of kinds of self-care. This will be very important for you. You are going to be navigating for a long time. You need to make sure your physical, emotional, and spiritual needs are being met. You need to make sure you sometimes have fun. This is not trivial, but necessary.

That's all I've got for now. I'm sure there's more...

Hang in there. It is going to be so much better.
DeeDee

Pemberley,

Yes, absolutely I know that feeling of having been punched in the stomach - it felt like total shock the first time we heard our neuropsych use the word "disability" and I will *never* ever forget that feeling.

I'll also second everything that DeeDee said - I would have wanted to say it all but she said it much more eloquently and concisely than I ever could have

The other thing I'll add - we have 2 of our 3 kids who have scored extremely low on one or more sections of ability and achievement tests that were run when we were tracking down their challenges. You have to remember why those tests are organized the way they are - they test very specific abilities so that you can pinpoint where strengths and challenges are and they can be *very* useful. I don't see them as limiting at all. Instead, those low scores helped us target where our children's challenges were, and once we knew that we were able to find ways to accommodate and remediate and whether or not they score a low number on the IQ/achievement test loses any kind of punch once you start seeing the strength that comes out when children are given a path by which they can succeed.

I also truly believe that the school years, particularly elementary school, are going to be the toughest years for our 2e kids to fit in and find their place in school. It's not what we planned for them when we were dreaming of having children, but it is what is. I've found it's helped me a lot to read the testimonials of successful adults who have disabilities - you'll often find the memories that stick with them are vague memories of how they didn't like or didn't fit in in school but found their place in the world as adults - that's something to hang your hope on for your dd. AND... you'll also find that many of them will remember an adult who was influential in their childhood beyond just the ordinary "they were always there for me" - oftentimes it's a parent or a teacher who believed in them, who encouraged them, who supported them, and who helped them figure out how to navigate through the maze of school and how to find their place in the world. That person, for your dd, is you Pemberley, and that gift, the gift of your love and support and determination for your dd is something that she will carry with her throughout her life and that one gift will be the lasting thing that means something in her life, that will set the bar for what she can accomplish and how happy, grounded, secure, and self-confident she will be as an adult much more so than a number on a test taken when she was young.

polarbear

ps - just wanted to add - you'll get past that punched-in-the-gut feeling pretty soon too. It may come back here and there, randomly, over the years and there will be times you might be sad or angry or just wish it had all never happened, but it's never going to feel this raw and this hard again. The majority of the time - by far - you'll be either very busy advocating/supporting/researching or - the best part - you'll be enjoying parenting your dd.

Polar, do you have some specific ones to recommend? This is so helpful.

DeeDee

Thanks everyone. So nice to hear from others who understand. Last spring we formed a Special Ed Parents group in our district - I thought it would provide a RL companion to this forum where I could talk face to face with parents who have been down this road. Instead the prevailing voices became those of parents with "typical" spec ed kids who insisted it was "impossible" for some of the issues that those of us on this board face daily to exist. Thanks heavens you all understand...

I have been telling myself "DD does not have leukemia or other life threatening illness. She has not lost a body part. She is not low functioning or intellectually challenged. Keep this in perspective..." Again intellectually I understand this. Keep this in perspective...

Ah yes, the mommy guilt. As DH and I sat reading separate copies of the report he said he went through each section saying "OK, I had this too. I didn't have any help with it and I got through school. HOW did I adjust to it?" He also pointed out that his road was tough enough with the portion of DD's issues that he shares but he doesn't have dysgraphia, dyspraxia, problems with visual perception, etc. I pointed out that I have the visual perception and fine motor issues (lucky DD - she really got the best of both worlds - huh?) but I was SO dang smart everything just came easy to me in school. I never felt like I was going through a "learning process" - it all just clicked immediately. Part of the problem is understanding how DD's learning process needs to be broken down into such small components. It's almost like trying to explain how to breathe - it just comes naturally but now we have to explore each minute aspect of each process. No wonder it feels like it will be overwhelming.

I think the biggest part now is getting the anxiety under control and we are working on that. She is working weekly with a psychologist who really gets it and the new SW at school also seems fully invested. The principal will remain a problem. I will have to ask very frankly at the IEP meeting next week if this will really be able to work in this school setting if the principal really, truly cannot "get" it. I have been told over and over that we are basically fighting a losing battle if the school environment continues to be a problem.

The neuropsych diagnosed ADHD-Inattentive and that was where her <1% score came from. I don't buy it - I think the test was a perfect storm that combined her issues with visual perception, fine motor and perfectionism. I think the test actually measured how she performs *when she is shut down from her anxiety*. He suggests that we get her on ADD meds - our position is not unless we see similar results in a test situation that does not trigger her anxiety. How is it possible that in 7 1/2 years no teacher, camp counselor, dance or swim teacher has mentioned concerns about ADHD if she is really functioning below the level of ALL her peers? How is it that her preschool teacher could tell me "I never had ANY concerns about attentiveness. None." The only person who ever mentioned her being inattentive was her kindergarten teacher - you know in the environment that triggered all these anxiety issues.

So I have to keep this in perspective, find out whether it's truly realistic that she will be able to have her needs met in the current school or what can/needs to be changed to make this possible, just accept that yes - she did in fact inherit the worst of both parents difficulties along with the gifts and remain grounded and realistic in what her needs are and how to address them.

Sounds good - now just to "put on my big girl pants" as I read on another thread - and just do it. Right?

Which test did she score the 1% on? You don't need to share that with us if you don't want to - I'm just curious if the score could be highly impacted by a physical or neurological issue and if there are clues in any of the other neuropsych testing re what might have impacted the score.

Re your dh - once our ds was diagnosed and we learned more and more about his challenges, it was easy to see some related issues in ds and more particularly in his father. It's true they both "got by" without accommodations, special help etc. But - realistically, dh isn't as challenged. And dh's father "got by" and was even successful in many ways, but he was also known as the man in the family who "didn't talk". In hindsight, having experienced the challenges first hand that my ds experiences with an expressive language disorder, that makes me really sad to think that maybe the reason he "didn't talk" wasn't because he didn't want to but because he really truly didn't know what to say. DH is from a large family, and we're now seeing related diagnoses/challenges among ds' younger cousins as they move through the first few years of elementary school - so for our family, there seems to be a genetic link that simply wasn't recognized in previous generations.

polarbear

No advice -- just cyber hugs. Thank goodness your DD has parents who will advocate for her!

Agreeing with MON, but not for quite the same reason.

You would still be working this hard for your DD, and loving her this much, regardless of what the disability was, and regardless of its severity. If she did have a grave illness, you'd be right there, bearing up, figuring it out, doing what you could.

My point is, the process of it *is not different* based on severity: you're in there, doing what you can. It's hard. (And it can be hard with "typical" kids too.) Parenting is like that. Wrings your soul out. But the keeping going is the thing.

I have learned so much compassion from parents who have faced the toughest situations-- some of whom wear their children's disabilities more lightly, and face them with more grace, than I have managed.

DeeDee

polarbear: the test involved sitting at a computer and pressing a button first when she saw the letter "a" and then in another round when she saw the letter "x" followed by the letter "a". She was obviously anxious about this test when we took her for a break right after - it really bothered her. The first test "without condition" she scored low average, the second "with condition" she scored <1%. When the neuropsych showed us the printout I saw that there were places where she hit the button for the letter following the "a" - so she saw it but her reaction time was too slow to count. Instead it counted as 2 errors - one for missing the "a" and one for hitting it for the wrong letter.

My guess is that once she saw that she made a mistake she froze up - her perfectionism shows itself in a fear of disappointing the adult asking her to do something. So visual perception to see the letter, fine motor to press the button and perfectionism realizing she was doing it "wrong" equals a perfect storm of anxiety shut down.

Obviously the neuropsych is MUCH better trained than I am so I don't want to say he's wrong but really - 100% of kids her age do better attending and NO ONE has ever indicated concerns about ADHD? I was at the library today talking to the children's librarian about all this and trying to find out about audiobook options. Even she said - "That's not possible. Even as a baby she always was attentive. She always paid close attention at story time - even while the other babies were wandering around exploring." In other words - not only did people never notice a lack of attending they even remember all these years later just HOW WELL she attended. If he measured her at 30th percentile I might be more likely to accept it but <1% - that just doesn't fit.

The story about your FIL makes my heart hurt. My own FIL is 85 years old. He is the one who turned down special ed help for my DH's obvious dyslexia when he was a child. If we talk about DD's LD issues in front of him he breaks down crying talking about how miserable school was for him. "They just told me I was stupid or lazy..." No, I think he is definitely ADHD and has some significant LD issues but no one knew about that back in the 1930's and 1940's. They were just unlocking it in the 1970's when DH could have been helped but his parents declined. In this regard I know DD is so much better off. It's still going to be a rough road though...

Master of None,

Very very well said!

Following along and thinking of yow Pemberly. And for what's it's worth I agree with this:

"I don't buy it - I think the test was a perfect storm that combined her issues with visual perception, fine motor and perfectionism. I think the test actually measured how she performs *when she is shut down from her anxiety*."

I see this happen with my DS only he becomes "angry" as well as shuts down. Like in a very similar situation (which has happened) Ds would have said "I HATE this ... this stupid thing I am NOT doing it." And so then ODD or something gets added to the list. Our situations are different but similar enough that I can really relate. I am pulling for you and your family!

I always tell my DD that she is smart in a way that is not honored until you are older. I've tried to use real-life examples of people we know and relatives from DH's extensive family tree full of gifted dyslexics. We make a point of having relatives talk to her about their life-experiences. For example, her great uncle, who owns a small ski-resort and has held public office, talked to her about how he can't spell and emphasized how excellent speaking skills helped him achieve success. He also smiled and winked when he told her that she's lucky to live in the age of spell-check. I just wish that the schools understood better how to support these kids so the school years wouldn't be so difficult. Hang in there.

Yes, we had results like that and I had the same reaction which faded over several months. With testing for several children now done I can second what Polarbear says. The tests are meant to drill down to areas of weakness, which in our case with more than one child meant several scores in the low single digits or fraction of a percentile score. I really value that information, know now that some of it can be changed and accept that the 99.9 percentile score and the and the 0.3 percentile score can with effort (mostly) peacefully coexist in the same child.

Yeah, this for us too. Just got a new one yesterday for DS7 and he's still below .5% on fine motor. Oh how I wish it would get better.


Some days I think the mommy guilt is nigh overwhelming. Cyber hugs to others who feel that way too, it's horrible.
My dh somehow manages to get through it without the crushing guilt, with a similar "I had this too and got through it."

My kids have had that test to (or something similar). It's always confounded me how you can draw conclusions from it that apply to attention in the real world But hey, I'm no neuropsychologist either

Anyway, for a little laugh for you for the day - the first time my ds had this test was the year he had the 2nd grade teacher who was convinced he had ADHD. He scored borderline inattentive on the computer test, and that combined with the teacher rating scale earned him a diagnosis of ADHD-inattentive, which later on was ruled out by multiple other private practioners, including the very same neuropsych who gave it to him in the first place. So the part that's funny (in hindsight of course)... on the way out of that first neuropsych eval when he was describing that particular test he said "That test was SO boring that I figured out a way to trick the computer!". AARGH!!!!!

Gotta just laugh at it all sometimes!

polarbear

That sounds like the Integrated Visual and Auditory Continuous Performance Test, except it was 1s and 2s for DD.

It put her to sleep. She dozed off.

Her scores on it (0.04 percentile to 75th percentile) were largely discounted in light of the observations that the neuropsych made during the exam as well as the results of parts of the NEPSY and the various rating scales.

DD and I both thought that the test ought to be banned by the Geneva Convention. It was torture.

LOL. Neuropsych said "most kids really enjoy doing it." Really?

Our neuropsych was more honest, though he though invoking the Geneva Convention was going a little too far.

Had our IEP meeting today with both psych and neuropsych attending. It was very interesting to say the least. Everyone on the team paid rapt attention as the neuropsych went through his report, explaining it in detail. He said "DD is one of those kids you really have to think about..." He kept driving home not only her "high level of intellect" but how much the difference between her conceptual abilities and performance levels affected her. It was pretty impressive.

He spent a lot of time talking about her inattentiveness, fidgeting when she had to work independently and "cognitive impulsivity". The psych, however, pointed out that "there are a lot of reasons for fidgeting" and explained how in her opinion everything he noted about her attentiveness is actually a result of her anxiety. She explained that DD "lives in hot task environment all the time." (She used as an example the stress of driving to a new place for the first time being a "hot task" but driving home on a familiar route being a "cold task".) "She wants to do better but her brain doesn't let her" and "she gets flooded with anxiety." Neuropsych seemed to drop it pretty quickly...

So it was again hard sitting and hearing each of DD's challenges pointed out and discussed. It really seems like too much to comprehend. He said he redid her IQ testing because there was SO much scatter last year and sure enough the scatter was repeated. I guess we no longer have a question about whether or not we are really seeing this profile which I have been told over and over is "exceedingly rare."

In the end I think the 2 experts were able to get the folks at DD's school to understand that not only are her challenges truly daunting but she is doing an AMAZING job of dealing with them. Yes, she has anxiety and headaches and somatic complaints but "most kids with this profile would be defiant and oppositional - she is not." The psych said that her "kind and sweet nature" means that she uses kindness as her defense strategy. Interesting concept. However there is concern that this will make her vulnerable to bullying...

Anyway, the neuropsych explained that DD does not meet all the diagnostic criteria for NLD "but it's a helpful diagnostic concept." So I guess I won't worry too much about the specific labels and just look at them as tools to get her needs met. Right?

After more than an hour of discussion about how to make DD more comfortable, how to address her anxiety, how to get her to stay in her classroom all day instead of feeling a need to use her break-pass to get out I couldn't take it anymore. I asked why on earth they were using a public shaming classroom management technique that makes her uncomfortable and is at cross purposes with everything we were talking about addressing. I asked the teacher if there was a reason the checkmarks she was using in lieu of colors HAD to be public. "Can't you record the checks privately? Both you and the child involved would know what your area of concern is but you can leave out the public component." Her reason was "I have used it in the past and have found it effective." I answered "The theory behind these systems is to embarrass the child being punished and induce anxiety in the other kids in the room so that they don't repeat the behavior. But you have a child in the room with a known anxiety issue and a negative reaction to these systems. If there is no compelling reason to make it public why can't you just use your system privately??????" So, they are going to try it. Not a permanent change but to "collect data" - if she leaves the classroom less often they will see if there is an impact. Totally disregarding that the effect of the system is already present and/or that they are providing a para and enrichment as of today/tomorrow respectively. But hey - if they got it we wouldn't have had to spend MONTHS on such a simple concept - huh?

Well, you are making progress.

It sounds like you will need to be most vigilant on the anxiety issue and avoid the public shaming techniques at all costs.

And the 2e plus kindness as a defense mechanism does sound like a potential problem from bullying.

And labels are tools to get needs met in a school environment.

I've thought about this for the last few days and frankly I feel a bit clueless. It seems obvious to my DH and apparently also to JonLaw but I am not getting WHY kindness would make DD a target for bullying. Can someone explain this to me? Have any of you had this situation?

I guess I'm naive but I can't figure out why the kid who is nice to everyone and has a sweet nature would cause kids to be mean to her. She used to continue to try to be friendly with kids with behavior problems even as other kids distanced themselves so that she tended to be in physical proximity when they lashed out. After being injured over and over she no longer does this - she keeps her distance from kids she thinks may physically hurt her. She hasn't made this connection in terms of kids lashing out verbally or emotionally but does this really equate with "making her vulnerable to bullying"?

I'm not sure that I think it's so much that she would be a specific target for bullying per se as much as once a bully does bully her, he may find the experience and lack of consequences deeply satisfying and thus find himself a wonderful target for his continued bullying needs.

Some people also give out "please bully me" vibes that bullies can read and respond to. I don't know whether she gives off these vibes or not.

That ability does not always (or often) follow from being someone who is always nice.

Being nice, even in the face of an insult or other testing of the waters by a soon-to-be-bully, leads to trouble when the person lodging the insult then decides that she can get away with it. Hey, I just needled this girl, and she didn't run and tell the teacher. Maybe I ought to try harder.

I'm told DD has never lodged an unkind word at another individual at school. Yet, as a rules follower that is also rather socially awkward, she's been subject to systematic bullying, both physical and emotional.

We are working on being less of a doormat and having a bit more social smarts, but we struggle against the thought that she will lose her instinct always be kind to others.

DS on the other hand, is also consistently kind to others, but when kids try to insult him, he shows some rough edges. So far, it seems enough to prevent the other kids from prodding further.

This was the point I was trying to make.

Does she get upset when she's bullied? Nice or not, I think a lot of bullies love to see the reaction. My DD is well-liked, fun, and lacking in "mean girl" energy. However, she is an emotionally immature hothead and "loses it" easily. For this reason, she has sometimes become a target, although it helps that she has a posse of friends who try to protect her.