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My daughter is 6.5 years and was identified as exceptionally gifted at 4. However, it's not symmetrical. Her cognitive scores are on the bottom half of average while her Verbal scores are at the 99.8%tile (She's a single point away from qualify here, so I hope it's okay I'm asking this here.) At four years old, I was concerned about this difference but they acted like it was no big deal. Yesterday she went through testing again for an IEP. The school psychologist said we were looking at a "twice exceptional" student because of this difference.

My daighter has SPD, anxiety, OCD, and ADHD. The SPD is important as she has trouble maintaining eye contact with people and is having trouble correcting speech issues because of it (trying to show her r, th, f, m, n, so on.) She can't read and can only name 18-20 letters. She can recall less from memory. She has trouble with phonetics because she can't remember the sounds for E,F,G,M,N,W and Y. She can do math story problems but can't remember what + and - are for. She's on her second go round of kindergarten and scoring at low average for her age. No one is arguing she needs and IEP. The problem is figuring out what services she needs. They keep asking my opinion and I don't know how to respond.

I have a child who WANTS to learn, even her teachers have seen this, but I don't know how to teach her. (Important info; she is doing an online charter school after a year of homeschooling since the Pediatrician can't/won't help and pushed it off to the school district. The Pedi really wants to see her in public school setting but I just don't feel that it is appropriate.) What kinds of thing should I know about an IEP for the gifted?

Thank you for taking the time to read this

Important info; she is doing an online charter school after a year of homeschooling since the Pediatrician can't/won't help and pushed it off to the school district. The Pedi really wants to see her in public school setting but I just don't feel that it is appropriate.

I wonder why your pediatrician feels so strongly about that. Why is it inappropriate, in your estimation? Not saying that you're necessarily wrong, but if you haven't yet tried that, I'm wondering what you're basing it on. It seems really clear that a full scale evaluation is going to need to be the VERY first thing on the agenda here-- if the local district isn't OFFERING one, then you may need to insist upon it. It's entirely possible that there is much more here than even initially meets the eye-- gifted children are extraordinarily capable of hiding the severity of underlying disabilities.

This sounds as though it could be quite a complex set of challenges.

Unless your physician and local district can help figure out what services your child needs-- and a way to actually DELIVER those to her...


I'd very carefully think about whether a home-educational environment is the best thing here. Even with a virtual school (as opposed to "homeschool") the onus is on YOU to be the one actually "delivering" or structuring interventions. Depending on what those are, it may really be the domain of a professional instead, but your virtual school isn't likely to admit that.

I say that as another parent to a 2e child who is a long-time virtual school student (as a way to avoid 'home-bound' instruction).

Most online charter schools are REALLY not good at doing interventions outside of a few very well-defined things. It's an open secret in this particular educational model. They basically reach a point where they shrug and say, "well, we've done _______ {intervention for ADHD} and we've done _______ {intervention for slow processing speed}, and we've told you what to do about {other challenge.}" Then they give you the cold shoulder if that isn't working. Trust me here-- I've been with one of the big names in this model for the last seven years, and they have a canned response to everything, and if you need something that ISN'T in the system as an option, you're out of luck.

What help were you hoping for from your Pediatrician? Honestly-- this DOES sound like the domain of your local school district's special education specialists. I don't know enough about ADHD at the severe end to know whether or not the kinds of memory and learning difficulties you're describing are possible there, but those things sound like really severe impediments to learning. I don't think that "just slow down and increase repetitions" or "use both auditory and visual cues" is going to be enough-- or you'd already have seen evidence of it helping. I'm assuming that is probably what your current school has suggested, maybe along with a move to less enriched curriculum (which would not necessarily be a good move from a GT standpoint).

To answer your first question; I approached them when DD2 was four and we had the initial testing results (she initially went in for potential autism). She was behind socially, didn't point, didn't communicate well, had speech issues, etc. The school district wouldn't/couldn't help because she scored in the overage or only slightly in the "yellow area of concern range". She simply didn't qualify. Plus it seemed EVERYONE focused on that top score and had no idea what to do with her. Never mind she couldn't spell her name. At the same time as this testing my first daughter was in the local school where they bragged about her scores and the groups she would participate in, advanced math and reading that NEVER happened. It was always pushed off until the school year ended. I watched a child who loved learning refuse to go school because it had become her job to help the others ate her table or she'd have to do the same desk work several times as she waited for her classmate.

I think we have a full scale assessment going on. The online charter is based out of our home district but is the K12 system and is about to be kicked out (charter is scheduled to NOT be renewed) so we do need a new school before next year. I have a teacher, a special Ed teacher, OT, and School psychologist all fighting to get her on an IEP despite average WIAT scores. We're awaiting some specialized test from speech though.

I honestly don't know what to expect from the doctor, or the school district, or the online charter. This is such new territory that I'm confused, overwhelmed, and fearful I'm making all the wrong choices. She has social anxiety, a big part of the reason she is home, but is working with a psychologist on this in hopes that a brick and mortar school is an option in the future. Grandma has severe dyslexia, which can be hereditary, and I want her tested for that but it seems the only way to figure that out is $1500 in testing because no one wants to cover it. She needs speech therapy that no one was willing to do two and half years ago. She hasn't out grown the issue.
We provide some OT therapy in the form of hippotherapy because we can afford it. The insurance is finally covering OT but we're on a waiting list now.

I did notice the initial IEP paperwork is stating "home-bound" is ideal which I thought was a bit premature with everything, and wants to deliver the therapies online instead of in person.
And I have been thinking a lot if this is the best place for her.

But IEP is a legal document, correct? If they find she needs help based a lot on what I see and their testing, instead of fighting a classroom teacher who doesn't see her as problem and therefore needs no help (something I'm watching a friend go through with her very similar child) then the local public school has to adhere to that IEP until it comes times for renewal, correct?

I started this all this when she was four because I knew then there was problem. I also knew that everyone saw a quiet little girl with a few quirks but was no real problem. I was hoping the initial testing would give me the foundation to get the education she needs from the local school but it didn't. Now I'm trying another way. As the psychologist stated yesterday; "this is not child who should be scoring average in average in kindergarten. This is a child who should be in second grade and looking at fourth. We need to use common sense here and get her help." (I love her for this but today the words really took meaning and now I am scared I can't give her the education she needs or deserves. It's why I am here.)

This is all over the place and I apologize. I don't know what to ask or do and will happily consider any advice I can get.

Okay, well, you're correct that your school (virtual or otherwise) HAS to follow procedural guidelines in writing an IEP.

Those guidelines are very much about the child's disability(ies) driving the services and accommodations. At least that is the theory.

But this is where pragmatically, there can be a complete breakdown, which is what I'm guessing is happening here. They can see that what they have on the menu isn't helping, and that nothing else on the menu seems likely to, either. Which is where you are now-- they don't KNOW what to do, and they aren't going to go looking, either, because what ISN'T on the menu is: a) difficult, b) unfamiliar, and most likely c) way more costly or problematic to implement.

Virtual charter schools in particular seem to be very...er... fixated on this last point, I might add.

It's good that you have educators working with you who understand that there IS a problem.

I see no reason why YOU should be on the hook for outside testing related to clear possible learning problems, however. Why won't THEY pay for (or provide) an evaluation for dyslexia? That should be PART of a complete eval in light of her family history, shouldn't it?? I'm really kind of scratching my head on that one. What has the school done in terms of evaluation?

And by "school" here, I mean not just the virtual school-- but also your districted school.

I also wouldn't necessarily judge your local school's ability to help with special ed needs on the basis of your GT older child. There isn't any federal law behind GT. For your younger child, ironically, you have MUCH more leverage. Provided that you can figure out what is going on and what to do about it. It doesn't sound to me as though anyone that you're working with has yet clearly identified exactly what the nature of the problem is, mechanistically speaking. I mean, yes, you have a handful of diagnoses, but you don't really have a firm connection to the particular learning difficulties that she's having. KWIM? That leaves all of you without a way to leverage change for the better-- because you don't know which lever to use.

It just seems far more likely that a B&M setting is going to have a wider array of options to choose from. As noted above, it's when your needs are way outside of ANY of those options that you begin to have trouble.

Please note that I have no expertise at all with the particular challenges that you're facing her-- other than familiarity with how cyberschools approach special needs as a general thing.

So far:
the request for IEP testing was submitted at the end of September. (She is livid it took until the end of November for them to start.)
November 26, 2012 the release for testing was signed.
January 22nd, DD2 met with the OT who recommended service but couldn't get testing in in time for the meeting.
January 25 WISC-IV and WIAT was done by the school psychologist.
Speech testing was ordered.

That's what we've done so far.

The school district did the simple head-start (?) screening and rejected her. Looked over the testing from Children's later and said she didn't qualify. Was IEP an option at this time? No one ever mentioned anything and kept telling me she tested average so she was fine. I know there is no mandate for gifted education.

Testing done at Children's included IQ, age based skills, gross motor, fine motor, speech, and a physical. It seemed complete but I've never cared for the way everything was so quickly dismissed but her verbal score. The psychiatrist had "never used those cards before!" and was so excited at her potential that she dismissed everything that scored so much better. Oh, and she said she had great eye-contact and social skills (she was wearing makeup, something that fascinates DD2, and she was talking about DD2's obsession at the time.)

I know I need a "lever" to get what she needs. I'm trying so hard to find that lever. I just feel lost with no map and am reaching tentatively in all directions. This recent testing is the first time my hand was not smacked in return, if you know what I mean. Having hope for a path I'm trying to make sure my naivety isn't used against me and that the IEP we draw up ends up to be useless. We're set to have another meting at the February to draw it up. I want it done right. That is why I am here

I'm going to have to apologize because I'm in a RUSH to leave to pick up my dd... but my one piece of initial advice is that you need to have your dd evaluated by a private neuropsychologist who does educational evals. It sounds like you had a full suite of testing (or close to that) in your dd's testing at Children's when she was 4, but I suspect she needs the same full suite of testing again (plus possibly more). Even though your school district is cooperating and wants to help, my experience as a 2e parent is that you'll never get the same depth of advice and information and referrals to other qualified professionals from school as you will from a private eval. You can most likely get that private eval - later - paid for by the school once they've completed their testing *if* you appeal or disagree with their findings... but you will have to wait until the school district has completed their testing (maybe they already have?) and you'll have to choose a private professional that they trust.... which might not be the person you'd pick independently.

I'd suggest calling your ped, and asking for a referral for a neuropsych exam, as well as getting some more detailed info re why the ped felt so strongly about the public school. Our ped has very strong opinions about schools too - his opinion is different than yours, but that's because it's *local* to us (quality of school help/programs/etc can vary quite a bit from area to area)... and I valued his opinion because he sees *many* families as well as, in his case, he had personal experience with our school district with his own children. Our private neuropsych has also been able to give us invaluable advice on local schools (public and private) that is insight we would not have received by going through a school eval or a paid-for-by-the-school-district IEE.

In our case, we were able to get medical insurance to pay for the neuropsych eval - but even if we hadn't - it would have been worth it's weight in GOLD... that's how important it's been to me as a parent to have it in planning for and understanding my ds' challenges and needs. FWIW, it also was very helpful in terms of having leverage when negotiating for IEP services at school - and our neuropsych gave us advice rather than asking us what *we* wanted the school to do for our ds - which happened to us at school during the IEP process - they asked a lot of "what do you want" questions of us... when really... they had good ideas what to do, and really *had* worked with children who had similar challenges, but they weren't going to let us know any of that because we would then, of course, ask for those same services. BUT - our school district is a difficult district to work with. Hopefully yours is better - it sounds like it is!

Good luck,

polarbear

AtSouthDam,

Always listen to polarbear regarding 2E issues (if not everything else)!

We've hovered around issues for my DD since she was about 3.5 she is "exceptionaly gifted" at least but these 2E issues don't fix themselves. 2E kids are the hardest hit with the school system and also probably the most misunderstood and in the case of my DD she gets especially upset when not understood, it makes her feel lonely.

My DD is 9 and this time I am sticking to the neuropsyche eval even if with my new PT job I have to pay for it myself and even if I were to start homeschooling and go from there, I need to understand her better and gain the appropriate approaches!

Moms know best and I've seen the "not quite right" stuff for years. I do alot to help my DD cope on my own (reading, working with her etc.) and have a hard time getting people to listen to me but as she gets older the "not quite right" gets more noticable and you can't write things off as much. And the child loses self-esteem and precious time for appropriate interventions/approaches etc.

Have you had vision checked? My DD used to turn her head away etc. with close up and it hurt her socially and how adults interpreted her behavior but in the end we found out she had double vision at closer range so those comments she made about "seeing four eyes" etc. weren't her active imagination, they were real, and scary to her when she was younger.

Also with the giftedness allowing her to be enough above the other kids (but not aligned with her gifted-level potentials) to get sidelined from Pre-K through 3rd it gets to be a jumble over whether she has some issues due to lack of formal education or neuropsyche issues. For example, writing three letters one on top of another (always vowels) and if you ask her which one she means it to be (her writing is hard to read) she just shrugs - can she not hear the difference, know the difference, why would such a smart child be missing this....and other examples.??

Why does she invent letter styles to allow for it to go "either way" when she isn't sure if it should be upper or lower case? Does she "not care" or hasn't she been able to learn?

Anyway, these super smart kids with...whatevers...I don't like the word "deficit/deficiency" I prefer "differences" if you need to use a "d-word" LOL are tough so continue to be her cheerleader!!

I hope this makes sense. Good luck!

Good to know who to listen to!

In regards to the Pedi; she's new. My husband changed jobs a few years back and we had to switch to Kaiser (HMO). We lost our old Pedi who I loved dearly and understood so much, listened so well, and so on. The new one, well, she's new to everything. Was new to Kaiser when we came over, new to the state, new to DD2. I told her my initial concerns when I first met her, how I disagreed with Children's and was not impressed with the evaluation (I'm pretty sure everything I said flew out the window with the mention of Fructose intolerance of which they wrote down the wrong kind and nearly accused of me of trying to kill my kid. Then came the IQ test and all her anxiety is because she's so smart and just doesn't relate to kids her age, etc, etc. It was bad, honest.) Well, she got that report and went through it. The report suggested an appropriate learning environment, preferably a school SUITED TO HER NEEDS. Well, every where I looked was unable to help or was going to cost way more in tuition then we could afford. Her advise is based only on that report. I asked for Kaiser to do a new evaluation and they've only gotten as far as OT.

I'm not sure how tied in the school district is with the K12 school system. They are the home district for our state but are slated to deny renewing the charter. I'm not sure how it works with district and school Special Ed in this case and will have to find out. Our home district is underfunded, understaffed, and is a pain to get service unless you have that lever. It's her homeroom teacher, the school OT, and the school psychologist working with me now. The Special Ed teacher sees some of the same problem but I don't feel she is quite as eager to help as the others. She saw the word "average" on the WIAT test and seemed ready to end the IEP meeting then and there. It was the school psychologist that stopped her. In fact, the psych's words of "We have kids like this, we've helped them before. You know what we need to do." are still loud and clear to me and, a day later, are irritating me as the others are asking me what I want them to do. They're the professionals and I sought them for help, they shouldn't be asking me what to do.

I've inquired about an advocate already (yay for school email!) and will email the pedi next about another evaluation since I requested it before.

As far as vision testing she's never complained about trouble seeing up close. She can focus on her DS just fine, and coloring. It's letters, numbers, and people that cause her trouble. (Example of the bad at children's, the psych that did the eval at children's suggested I simply needed to "teach" her to make eye contact with me. I few days later I asked her to look at me as I brushed her teeth and she broke down in tears telling me she just couldn't look, it was too hard.)

I don't have time for a long post, and am on my phone so this may be blunter than intended but you have a highly gifted GIRL with sensory, social, attentional, anxiety and ocd and learning difficulties. You have labelled the parts/symptoms of what (i think) has got to be a global neurological developmental issue. Please find some one who is not just expert in 2E, but expert in highly gifted girls who are 2e. Being gifted can mask developmental issues, being a girl does to, being both makes it very hard.

It nice for the hospital staff who tested her at 4 that they'd "never used those cards before", its clearly distracted them from everything else - don't let it distract you!!!

Speaking as the mother of an MG girl with aspergers and a HG+ girl with ADHD (poor kids hit the genetic jackpot with our two families) it took me way way too long to understand my aspie girl because "she's so bright it will click soon" "but she makes eye contact" "but she likes people". All true, at least some of the time. She's also a gifted girl that took 3 years from 4.5-7.5 yrs old to reliably learn the whole alphabet. Who won't go to the beach because of the sand and sunscreen. Who loves people but has no real social skills. And who can be so concrete in her thinking that she seems quite slow (she's not). People tell me how lovely and well behaved she is, how normal she is, but mostly are unaware of how she should not be struggling to be barely passing school, or that she doesn't get invited to birthday parties or other kids houses, and that all the little ways she annoys and frustrates, irritates are symptoms of aspergers. Her tone of voice is off, her literal interpretation is too mild to scream autism but severe enough to cause daily disconnects in communication.... Her reading comprehension gets assessed as poor because of social comprehension issues... If YOU bought there was a problem there probably was. It's great that her giftedness will help her adapt (whateverthe problem actually is) but don't let her giftedness deny her a full and correct diagnosis for whatever else is wrong. Knowing empowers you to help her.

Thank you.
To all of you so far, thank you. It looks I have found a place where people understand what I'm going through and your advice is being listened to, considered, and even acted upon. Please keeping it coming!

You all won't mind if I stick around, right? (though I may mostly lurk) I'm reading through other posts and seeing so many of you going through the same stuff, seeing the same things, and am learning how you deal with some of the same problems.

We got a referral for the Neuro Psych exam through the pediatrician and insurance due to her fructose intolerance. Thank you for the recommendation to seek it. Hopefully they are listening to the part I requested of experience with highly gifted girls.

AtSouthDam, does your DD have HFI or is it fructose malabsorbtion?

Her file has it listed as Dietary Fructose intolerance, I assume fructose malabsorption.

Which comes to a question that I have struggled with all day; the referral list HFI as the reason for the referral. I am constantly correcting medical staff as to which one she has, which I think is ridiculous as they should have the report from the gastroenterologist.

I want to correct it but at the same I feel like I'm finally getting somewhere to getting her some help. I'm getting so tired of hearing that she tests low average so she must be fine. I've been looking for help since she was two years old and stopped looking at me.

Is correcting this likely to cause them to retract the referral?

Is correcting this (again) going to cause me problems?

ETA: I've had an email open to her pediatrician for 30 minutes now and am in tears. I'm so afraid that is will retract the referral and yet another door will be closed to us. I've been trying to get her help for nearly 5 years now and every time we're turned away because she'll test "average". She struggles with so much and knows she does, it's hard for me to watch. I just want help, always have, but no one seems to be around to give it.

AtSouthDam - I am in Australia, I have no idea how your health system works so I can't help you there. I am so sorry. But Dietry Fructose Intolerance is Malabsorbtion yes. Really there should be no confusion, HFI is far rarer and more serious, if she had HFI you would surely have known that with absolute certainty yourself.

But my understanding is that even malabsorbtion can be severe and cause huge problems. For us dietry intervention has had a profound impact on our DDs functioning. I wish I could help you. I understand trying and trying to get help for an odd child and not being able to find it.

It's not updated very often any more, but one of my favorite parenting bloggers has multiple kids with fructose malabsorbtion. She doesn't have the problems that you have the with the school system, but you still might enjoy reading some of her archives. (I particularly remember the one where the other parents were giving her the hairy eyeball when she was telling her daughter that she could not have any strawberries until she ate this roll of Smarties.)

Elizabeth I am the mother in the supermarket saying to my kid "NO! Don't touch the fruit! It will make you sick, her have some crisps." And yes I get the looks. My dd has just discovered the sweets and chocolates at the cash register and is asking for them and now I get the "why lie to your kid?" Look when I tell her they will all make her sick but I have something for her at home.

I think I may need a new pediatrician. This one just emailed me back asking if I had not heard the term hereditary in reference to Ciara's fructose intolerance. I had not. I distinctly remember, though, being told not to let food become a battle because it only makes her feel bad if she eats, not slowly kill her. That would imply she doesn't have the hereditary form, right? I don't think she knows the difference. On the plus side we haven't lost our referral yet.

Thanks for the blog link, I'll have to check it out. I used to keep smarties in my bag for that exact same reason but as DD gets older she needs them less and less. She simply has no taste for things that make her feel bad. It does upset me that McD's feels the need to put apples in the happy meals now. I get really funny looks when I ask them to switch them out because they make my child sick. Just add more french fries.

AtSouthDam you really really need to know which your child has. If she has HFI and you have been given inadequate advice (which I would guess is unlikely but possible) then diet may be a very real player in her issues.

Can you go back to whoever diagnosed the fructose intolerance?

Not quite the same thing, but perhaps it will make you chuckle-- I certainly go that particular hairy eyeball in my very granola town when I read the label on the back of some particularly heinous kid-junk-food item when DD was around three... and handed it to her in the shopping cart, smiling, saying "Nope, it looks great! Just sugar, artificial colors and all-artificial flavors!"



Hope that you can get some good answers from your medical providers. It's very hard not knowing what to do.

I can't due to insurance change but the pediatrician said she had the GI's file. I really don't think it's HFI, nothing matches up and the test done are wrong for it. She had diarrhea and stomach cramps after eating fruit; no jaundice or vomiting. The test done was a hydrogen breath test after consuming fructose and it was positive very, very quickly (12 to 95 units within 60 minutes).

A chronic care nurse will be calling me and hopefully we can get this cleared up. This is NOT what I expected from asking for a Nuero-psych referral!

HFI does not always come with jaundice and vommiting (usually does of course), by yes clearly she was tested for malabsorbtion not HFI. Good luck sorts it out!

Her record has been corrected and the referral revoked. I did get the names and number for our county's school advocacy and some for testing so at least that is a step in a direction, hopefully the right one.

If anyone knows of someone who has done testing for 2E kids in the Denver area, especially girls, I'd love to hear some recommendations.

Oh gosh that is so disappointing.

It is and it isn't. The amount of information I was finally able to get from the care nurse was a huge help. I have the number to advocates for our district and I was able to find some affordable testing for LD at the college campus. There's an intake appt where I hope I can get a feel for how they will respond to test scores we have already. It far more information than I had before when neither the doctors nor the schools wanted to take responsibility for the necessary test.

An update:

We DID get the IEP finalized under a learning disability. She'll stay in first grade and continue first grade science, history, literature, music, and art but continue to work at slower kindergarten pace for phonics. I'm okay with this plan for the rest of the school year. I am very happy I now have documentation that, even though she tests low average for her age, she does display areas of severe problems with phonics, reading, writing, and math calculation. I should have test results from the school soon and hopefully actual numbers will tell me more.

She'll be getting tested at the University this summer for learning disorders and I have made them fully aware of what they are getting. They have all the testing result I have so I am hoping they can give us a hand. I'm still looking for affordable neuropsych testing. If anyone knows of anything in Denver I'd love to know.