Hi all, I'm the mother of three gifted kids, at least two of whom are 2e. In process of getting deeper w my 12 year old son who is currently in FT gifted program, 6th grade, he's suddenly hit the wall. Current dx is ADHD w anxiety but indicators of developmental issues and going to get neuropsych eval by doc w expertise in 2e.

I've asked twice for Spec Ed eval and been refused twice bc test scores and grades were high. Middle school has been nightmare so far. I haven't heard a single nice thing all year. Very poor executive functioning, lacks self awareness, doesn't read social cues and has no ability to "play the game."

Teachers have not followed (simple) 504 and seem to range from defensive/combative...to inexperienced/ineffective.

Just received word that OT has met w teachers and some interventions are planned --I was unaware he'd been screened and have no idea what the findings are.

He was supposed to be evaluated for motor and sensory issues. Waiting with bated breath to find out what's going on.

Neuropsych is looking for spectrum disorder, NLD, EFD, etc. I don't think it's autism but it's *something.*

Was so happy to find this forum. This has been the most painful year yet. Ironically, I have gifted master's and used to teach in this program. Unfortunately, that's worth less than nothing when it comes to figuring out my own child.

Hi, Eco--


I think that's a good plan. Gathering more information can be so helpful.


You might want to type the word "functional" into the search box at wrightslaw.com. Federal law protects children with disabilities-- not only those with academic challenges, but also those with functional challenges, which can run the gamut from social participation, to self-control, to executive functioning, to pragmatic language, to handwriting, to toileting or buttoning pants.

If your child's deficits in functional skills impact his ability to be successful at school, he is absolutely entitled to a full evaluation, regardless of his academic skills. The information at Wrightslaw may help you make that case-- it did for us.


I'm so sorry. Sometimes it is harder for them to understand the challenges of a 2E than a "regular disabled child." Because "if he's so smart why can't he just." It can be so hard to get people to see the gifts and challenges clearly-- the neuropsych report should add data and clinical observations into the conversation and (hopefully) help bring these things into focus for the school.


They are allowed to start services for some time under RtI (Response to Intervention)-- trying things they think might work and seeing if anything helps. The good news is this means they see that there are problems...


Sometimes it takes a lot of experts to give you the pieces to put together. You'll figure him out.

Welcome.

Thank you so much. I am really having a difficult day...week...month...year. I really hoped this program would help him have a better educational experience. It is 40 students from around our city, selected from all the identified gifted kids.

He just told me I am going to be "getting a phone call" bc in science, they were cutting cardboard with Exacto knives and he "jokingly" held his up in a menacing gesture toward a classmate. I haven't received a call but what in the world do I say to that? A) I can't imagine a teacher allowing a bunch of unsupervised 12-year-olds to use Exacto knives but B) particularly my son who is impulsive and has identified behavioral issues (not like this, though, just usually talking too much, blurting out, and not turning in work). He said the administrator told him that "depending on how the phone call went," there may or may not be more disciplinary consequences. I don't even know what that means.

His program is a "choice program" and one of my friends who is a Special Ed processor told me that the process is different in this type of situation. IOW, he is not *entitled* to be in this program, so the regular rules don't apply.

There really isn't a great placement for him. I've considered putting him in our assigned school but his academic skills are advanced. It's the behaviors that are the issue. It's like he is an 8-year-old socially/emotionally but he talks like a (smart) 18-year-old and in adult company, he seems perfectly well-adjusted, if precocious.

Put him in a room with his age-mates (who are all highly gifted--so I don't doubt he really stands out) and he fails to assimilate. I can't believe how sad all of this makes me, and confused, and angry. All at once.

Welcome!

I'm not sure what to suggest, but your school district sounds like ours. Ours would have never initiated or agreed to any assessments or interventions, though.

If you put a written request in for a comprehensive evaluation, they have to do it, and if they refuse, they are supposed to send you a prior written notice. You can then take action, such as going to due process/a hearing. With a school district like this it may be better to get your own eval if you can afford it and present it to the school, because if the school does not WANT to do an eval and you have to force them, you can almost guarantee that they will find him ineligible and blame all of his problems on you. I had tried to get my own eval of DD but the evaluator I chose turned out to be as idiotic as the school and could not understand 2e or her issues. So it was a waste of time and I couldn't even give the report to the school, because even though the test results showed large discrepancies indicating a LD, the report said she was fine. I FINALLY found someone who seems to get it.

Welcome

Argh.

Another thing to type into the search box at Wrightslaw: "Manifestation Determination." If an unwanted behavior comes as a result of a disability, there are some legal protections. It helps to know them in these situations.

We have often negotiated with our school to craft consequences that result in maximal learning for our child-- that is, not gratuitous punishment, but social learning through making mistakes.

The other thing is that while your DS may not have a "right" to be in this program, he cannot legally be excluded from the program on grounds of his disability alone.

This is an excellent resource... has come in handy for us many times. http://www2.ed.gov/about/offices/list/ocr/letters/colleague-20071226.html

This document, from the US Department of Education, advises that:


That means if their standards are biased against people with disabilities, they are inappropriate and can be challenged.


That's... "normal 2E" in our experience. I know it's hard. Try to treasure him in his complexity, while easing his interface with the world where possible. The problems are not with him, they're with the interface.

Hang in there!

Welcome and Hugs.. You are not alone here. My DS16 had a major problems in a pullout gifted program in 6th grade. Major anxiety problems and altogether a terrible year. I chalk at lot of it up to teacher who expected a higher executive function out of DS than he was ready for. (Gifted and High Achiving kids were thrown together.) And the beginning on puberty that has multiple issues from hormones running amok to the craziness that is the social skills even of the average 6th grader.

Stupidly I didn't get him 'tested' until last summer after his freshman year of H.S. He did much better at junior high in 7th & 8th and then began to have problem in a full honors load at H.S. Neuropsych really wanted to label him with ASD but it doesn't really fit, and finally gave up with a "some characteristics of autism" on his report as well as a LD, anxiety disorder and depression.

Good luck and getting your DS the accommodations he needs. In 6th grade we didn't get an official 504 but I got him private therapy for the anxiety and eventually put him in a social skills group. Academically we just backed off, reassuring him that school the next year would be a lot different. Wish I had worked a bit harder on his language processing/essay writing issues.

He has a 504 for OHI (ADHD) and the district coordinator ordered OT eval at last meeting--I think largely bc she must have noticed that the teacher's (one in particular, I'll nickname her The Bully)agenda seemed to be to REMOVE each of his accommodations. Each time The Bully spoke up (wanting to remove extra day for incomplete work, even though ALL the students are allowed to turn in late work, for instance), 504 Coordinator said NOPE, that is standard for ADHD. And then 504 Coordinator ADDED things (which made me happy, I was feeling outnumbered) that I would never have considered asking for. One of the *many* things The Bully complained about is that my son has trouble handling his Trapper Keeper--and bumped things on her desk. Also, he is very physically slow and it takes him forever to get his things out of his backpack and vice versa. So the counselor said--"maybe a motor delay?" And I said, I haven't considered that but he is very slow. Before I knew it, 504 Coordinator was ordering OT eval to screen for motor/sensory issues, telling me even if they can't provide services, it would give me a better picture.

The Bully was visibly annoyed by all of this. Small victory.

I have asked (and been refused) for SPED eval twice since third grade when his then-counselor told me she observed in classroom and he seems to be in "his own little world." I have had Asperger's in the back of my mind since then but just based on DSM criteria, it didn't really seem to fit.

I inhaled the OASIS Guide in the last 24 hours and am seeing my child in it--looks to me like this is a much more nuanced diagnosis that I recognized.

Met with neuropsychologist today. Some of her questions were not what I was expecting and came away feeling pretty overwhelmed (onaccounta--he evidently really does have some pretty significant indicators). She sent home parent rating scales for:

ABAS II
BASC-2
BRIEF

She herself used to teach in this program, and was so informative, patient, and user-friendly that I'm glad I took this direction. Even though it is costing a small fortune, out-of-network, that I can't afford.

I love my son exactly how he is and my mantra is: "Just let DS be DS" because I see the beauty in his brutal honesty, guileless, open-faced personality, and warmth, love and affection toward his family, friends, and pets. One of the most difficult things yet was when we brought him into a team meeting at his school this year, and he looked like a defended, skittish stray dog. I saw then what his teachers see and understand why they don't like him...but I didn't even recognize that child and it broke my heart.

Thank you so much, Dee Dee and bluemagic. I don't have the hang of how the posting thing works yet or I would quote you. It helps so much to have somebody to commiserate with.

As I said in my above post. Hugs. I have been there and I know how frustrating and discouraging it is. My son's 6th grade teacher (who had only taught gifted kids his whole career) told me to my face that my DS was the most disruptive kid he had ever encountered. Mostly DS was melting down and having anxiety attacks, not hurting other people or things. Same teacher told me at the end of year that my son really did belong in the class. Sigh And don't get me started on the 8th grade science teacher who decided and threw a fit that one of DS's doodles was a satirical picture of her. He was so confused.

What grades are the program he is in? I'm curious because the program my DS was in was 4-6th and his problems happened mid-year so things were going to change the following year anyway. Then when he got to 7th grade they didn't enroll him in the 'gifted' humanities class. That only took one meeting to resolve as in my district once tested as GATE the school is required keep them in the 'gifted' classes through 8th grade. (H.S. is another whole issue I won't get into here.) I recommend you look at what the district policy is on gifted education.

You aren't alone in realizing there isn't really a good place for you son. I've been so frustrated for years trying to fit a round peg into a square hole. My son's H.S. English class is case in point. DS can't be in the honor/AP English classes my H.S. offers, he just can't for a number of reasons I won't go into here. But the 'regular' class bores him to tears. He reads circles around the other students and gets so frustrated with class discussions that are so superficial after years in honors programs.

I think that most of the parents who post here can identify well with that feeling of having "no place in the world" that is a good one for our kids.

It's a sad thing to realize that, as a parent.

unsupervised with knives,no but at 10 to 12 we did woodwork and cooking with one teacher to 30 kids. Maybe in future the teacher should put your son at her desk for such activities so he can't get into silly activities with his friends (it was probably the result of multi child sillyness).

Welcome Eco! You will definitely find lots of people here with similar stories, and some great advice as well. DS9 is 2e, but we homeschool now, so I'm not dealing with his IEP at the moment. But we've had to drop out of other activities because the adults involved had no clue how to help him succeed, and were mostly unwilling to take my advice. We still haven't figured out exactly what that second "e" is, either; it's a work in progress.

If you have the energy, I would definitely fight the school for a comprehensive evaluation. But do keep in mind that they probably don't see a lot of kids like yours, so their evaluation might not tease out certain problems, or they may reach conclusions that someone more expert in 2e issues would not.

OT called me today and said his visual something and fine motor skills are above average, but she gave some sort of assessment and identified some "sensory" things. She didn't elaborate but said she'd email her report. Then she didn't. Which pretty much encapsulates how communication has been all year with every layer involved.

I said the teachers haven't followed 504 plan consistently this year, and the biggest complaint I have is that they do not respond to my weekly, check-in email, asking about his performance and behavior. One does (but her tone is not descriptive--I'd describe it as contemptuous, but I tend toward hysteria). The others don't for a long while, until they do--and then it's never any good news, after weeks of my assuming no news is good news. I've tried explaining I'm trying to get a picture to share with his prescribing doctor and counselor, but that has been entirely ineffective.

I took DS to a counselor today who is going to do EMDR therapy with him, long-term, to try to strengthen executive function and self-awareness. When we left, DS was so relaxed and happy, he skipped to the parking lot and proceeded to do a bunch of push-ups. He was very smiley and warm during the session and that was heartwarming. All I've seen lately has been a very drawn, defended, and miserable child.

I assume EFD is executive function disorder/dysfunction. DD9 has similar issues and we are in the process of a neuropsych/educational eval. I will update on what I find out in case it helps. He said that it's important the school doesn't think it's "just" ADHD because there is so much more to it. He did standardized testing specific to executive functioning issues. Other than the Rey Complex Figure Drawing (which she messed up) I'm not sure what he did. Here's a kid with a matrix reasoning score that hit the ceiling and she had no idea how to draw this design. She did it in haphazard pieces (you can google this), but then was able to duplicate the hapharzard pieces perfectly from memory 30 min. later, which probably indicates the other "e".

Also if you are seeing motor impairments/clumsiness you should ask about Developmental Coordination Disorder. Look up the Wikipedia page on this. This is what my other 2e kid has and he qualified for a "physically impaired" IEP.

These would be for symptoms of ASD, EFD/ADHD, and any other emotional indicators.

Good to hear your 504 liaison is supportive. I would view this person as a resource for possible sped eligibility. OT services are not stand-alone, so the referral for OT eval signals some openness to moving to the next level. I would echo blackcat's suggestion to consider DCD and the physically-impaired classification. But it sounds like you have a sympathetic neuropsych involved, so she should be looking for that and many other possibilities, anyway.

Thank you! I will be really interested to hear about the results. With my son, the ADHD thing has never really fit because he is neither hyperactive nor daydreamy. Stimulant med has helped, but not with the big picture, only with impulsivity. And his medication makes him miserable, but what can I do? I have suggested homeschool to him (he never takes meds at home) but he is firmly opposed, loves his friends.

The thing he does NOT seem able to do is self-initiate when not interested in the subject, sustain attention under same conditions, switch gears, multitask, etc. He is also pretty terrible at anything related to self care. Sounds like EF stuff to me?

He is deeply reflective and intelligent and highly creative. He is wonderful at music. He is hilarious. He doesn't seem to have motor delays (except maybe in terms of motor planning?), is reasonably athletic, good eye hand coordination (thank you, LEGO), likes to draw, write stories, etc. Affectionate and loving with us at home.

He can also be a giant pain, defiant, angry, prone to withdraw, and has no real desire to be helpful or "play the game" socially in most situations. He does not have much patience or respect for anyone or anything he feels is unpredictable or illogical. Except for his mama, thank goodness.

Also look up "Sluggish Cognitive Tempo" on Wikipedia. Neuropsych didn't come out and use this term, but what he was saying to me seems to match up.

There are many classes of meds-- if one is unpleasant, other solutions are likely available. Do you have an expert prescriber on your team who is very well versed in the details? We use a developmental pediatrician. I do not recommend letting a regular pediatrician manage this on an ongoing basis.

People do not have to be hyper OR dreamy to have ADHD, by the way. The inattentive type can be quite subtle but have profound effects on the person's EF skills.


People with ASD and/or ADHD often have these problems. They do improve if you work on them, but sometimes improve best with the right meds AND working on them at the same time.


Oh, yes, this is tricky to manage, isn't it. Could very well be Asperger's (now just called "autism"-- but the Asperger label is still descriptively helpful). Or an edgy person with EF issues. Only the neuropsych will be able to tell you...

ps Is your neuropsych doing the ADOS? I would recommend it.

This is an interesting link too regarding executive functioning.

http://en.wikipedia.org/wiki/Dysexecutive_syndrome

The "sluggish cognitive tempo" thing is really interesting. Seems to fit in a lot of ways.

Meds: he is taking his second stimulant class, now. It seemed better and then worse. Ugh.

Neuropsych is doing ADOS, maybe WISC-5 (she is looking at old IQ scores first). I don't know what else.

Also, Dee Dee. He currently has his medication prescribed by a psychiatrist. We switched from a neurologist after that doctor was unwilling to try anything but methylphenidate. He is on an amphetamine now (Vyvanse).

The neuropsychologist made the same suggestion you are making, and is going to give me some names of developmental pediatricians. She recommended this after a long interview, and mostly because of her questions and my answers to a number of questions about constipation and other functional toileting issues. Who knew? Not me.

Eco, you sound like a very attentive parent who's moving in the right direction.

I kind of feel like the polar opposite of attentive right now, like I've missed some very important clues. But he held up pretty well (very well!) until this year. I have told a couple of close friends about the neuropsych appt and that she is evaluating for autism and nobody can even fathom that could be possible.

And I've asked twice for SPED to look at him, no dice. When I first asked family doc for neurologist referral, he told me the only thing wrong with my son is that he is too intelligent to fit in easily.

It is really upsetting that a child has to flounder and be miserable before anyone will help. Is this more of the 2E problem?

I'm not sure why the idea he might have autism is so much more painful than "just" ADHD. But it is.

We have had an incredibly difficult time getting anyone to understand what DD's issue is as well. She is hyperactive and impulsive at times (she actually BIT her brother the other day), so I'm pretty sure she has ADHD combined type, but the medication was not really speeding up her processing or fluency issues, or helping her to organize her thoughts to write, at least not to a normal level. I think that since she also has ADHD as well as EFD it improved her focus so that there looked like a slight improvement, but it was because she was focusing better on the task rather than having an actual improvement in processing. She had the WJ math fluency test on stimulants, and then a few months later, on guanfacine, which is a non-stimulant. Her score dropped from around the 50th percentile to the 25th percentile. So maybe she did process better on stimulants, but I feel that she was no where close to "normal" even on stimulants, and there were still large gaps between fluency and conceptual ability.

Thought this was interesting:
http://www.additudemag.com/adhd/article/7051-2.html

It talks about the differences between ADHD, EFD, and LD

Our DS12 was misdiagnosed for years-- we knew something was unusual and tried to find answers. We were told he couldn't possibly have autism because [he speaks so well, he clearly attends to everything that's said, look how bright he is, he's just quirky and gifted, etc etc].

(That even though he adored spinning objects, lined up toys rather than playing with them, gave little scientific lectures to his friends, and freaked out at transitions. I mean *really*-- these would have been obvious cues, except that his gifts blinded the evaluators to these traits.)


Yep. That's the 2E problem. It's very hard for them to see. And kids like this are rare enough that most schools have no experience to bring to bear. (Based on level of giftedness and disability profile, I figure my child is at most a once-in-a-career type for any educator.)


You know, one very distasteful side effect of the "autism awareness" campaigns is that autism has had a lot of press as a "devastating illness." ("This family was happy-- until autism struck"--cue the ominous music.) It's not an illness, and may or may not be devastating according to circumstances. This stuff can leach into one's brain and make one think that an autism diagnosis is an ending.

A 2E autistic life is a quirky and challenging life, but can be a very good life. I persist in believing that there is nothing wrong with autistic people per se (they are part of natural human variation). What's hard is the interface between the person/family with autism and the rest of the world-- the world may be "aware," OK, but there is not yet enough acceptance and understanding to make it smooth sailing.

And yet. My DS just came back from a school sporting event very happy-- he had a lovely time, no parental supervision, found and enjoyed his friends, remembered to eat dinner, happy that his team won, feels good. That is: doing normal 12-year-old stuff. We had a heck of a strenuous journey to get here, but here we are, and things are looking pretty bright these days.

And you know, that is ALL I want for my son--to be happy and accepted. I am so disenchanted with his "gifted program" right now my impulse is to pull him out and tell them they are hideous (having received a really nasty email today, again, from a teacher who went on and on about how he is talking excessively in class, in a very unprofessional manner--knowing that he is on cancellation list with psychiatrist and we are taking him for eval).

But my son says that all of the ugly at his school is worth having friends who understand him and with whom he can use the words he uses and express the ideas he wants to express.

If there weren't this huge threat they might not allow him back next year (they haven't explicitly stated that, but if he doesn't get a C or better in each class, it's the policy), I would feel less stress. If my daughter weren't going there next year (with same core teachers), I'd also feel less stress. Thankfully, she is NOT 2E and does well with teachers, much more savvy.

Because I could not survive another year like this one. My eldest had his own issues (tics, ADHD, epilepsy--now I'm wondering if he is autistic), but he was very, very quick and stayed on top of academics, never any issues with his grades.

I hear you. Does the principal know about tha nastiness? My inclination would be to sit tight until you know from the neuropsych what you are dealing with, and then figure out what the best educational environment will be. But I would not wait on addressing the nastiness with the principal or supervisor. Every child should be treated with respect and care, even if they mess up. (Humans do mess up.)


That's important. Any prospect of a better teacher next year? Can you ask the principal to take care with the teacher placement and find someone who will be accepting of your DS's quirks while helping you work to solve problems as a team?


That's another reason to share the nasty email now-- if there is any prospect of this teacher grading him low to get rid of him, I'd want that paper trail established.


Try to wait and see a bit. Things will get less murky, I think, once the neuropsych weighs in. That person can also bring their expertise to bear on crafting a school situation that works better.


I know what that feels like. My sympathies.

You'll find solutions... it just takes longer than it should.

Dee Dee, I have finally reached full bore Mama Bear, after the nasty email. Not only did I forward it to the coordinator, I also forwarded previous emails from the same teacher that directly contradicted a couple of his claims:

He stated my son had been disruptive all year, when I had emails saying "behavior is good."

He stated my son did not do a huge painting project, which, in fact, my son LOST attempting to bring home to complete...and which we recreated at home. I had two emails stating the project was coming along well and that my son was on task.

(The teacher told me he would accept it late. My son spent many hours on it, and it's beautiful. The teacher gave him 24/300 points. Yes, after telling me he would accept it.)

I also pointed out to the coordinator that I'd asked both this teacher AND the X-acto knife teacher to move my son close to their desks because he has not been on task in class, and neither of them moved him. To me, that is educational malpractice...kid with ADHD, having med issues, mother asks for extremely simple intervention...

But I digress.

Not only did I email the coordinator and forward my "evidence," I used the words document, disability implying I want it on record. I am usually much more conciliatory and empathic but I've had enough of this.

I also cc'd my father, who is an attorney, fact of which coordinator is aware.

The thing is: he has not had proper supports in place to succeed. I feel like I need a clearer picture of how he might fare, with his 504 actually implemented and my having a better understanding of his issues. I think I made that clear in my email.

To everyone, I have read all of your posts very carefully and thank you so much for sharing. I can't figure out how to do the quote thing easily and so I'm spending too much time trying to reply.

It is so good to know the people make it through this muck.

I totally understand. Just wanted to add to my previous posts that for my son things HAVE gotten a lot better for my son. Sixth grade was terrible and you almost wouldn't recognize him now. He is 16 and a sophomore in H.S. and he just got back from a week long spring break trip with his band. That isn't to say he is perfect but as he has matured he has learned to handle his emotions better. I don't have a lot of advice except to hang in there and get the evaluation so you know best how to help him.

Which "autism awareness" campaign(s) have done this?
Or was the press acting counter to the information put forth by the "autism awareness" campaign(s)?

All of what you describe is egregious. I'm glad you're making the principal aware.

Make sure you do this in such a nice tone that you leave them room to turn around and make it right. This is hard (when you are THIS ANGRY) but someone has to act like a grown-up around there, and it's most likely to be you. Calm, measured firmness is your friend.


Perfecto. Mastering the lingo helps them understand the situation in a new light.

Well done, Eco! Keep teaching!

That is so encouraging, thank you! My son's favorite class--and the only class where there've been no "issues" is BAND.

I think the thing I hate the most about all of this is how frustrated it's made me with my child, even knowing that so much of what's going on is beyond his control at this point. He has been entirely clueless about everything. When I talk to him about how his teachers perceive him, he looks so confused, and hurt.

It's awful when the adults seem to view the child as a "jerk" instead of having some empathy for his predicament, which I've done my best to communicate. I feel like I've been beat up this year.

We were so fortunate in his elementary school. Wonderful teachers, he bonded with all of them (except one). He is actually a very relational person and needs to connect with his teachers to feel safe. One of his math teacher's complaints this year has been that he "approaches her to have non-math related conversations." I mean--what do I even say to THAT? When I taught, those sorts of conversations were the best part of teaching. I feel like they ought to give some sort of empathy assessment to teachers and have a cut-off score, before they are allowed to damage our children.

Autism Speaks routinely puts out advertising with this message.

Poor sweetie.

It is very hard to go around in the world and have people mad at you all the time and not know why. VERY hard. He may feel rotten about himself (unjustly).

I spend a lot of time teaching our teachers to simply be more informative with DS so that learning can take place. That is, for them to tell DS explicitly and calmly what other kids can infer. "When you do X it bothers the class; I need you to do Y." "When I say 'we are on page 42' I mean 'turn to page 42'."

They have a hard time with this (because "he's so smart he should know")-- but it's an important intervention.


Yes-- you can be the one who is left holding a lot of rotten feelings. If you can, do something nice for yourself.

I have tried so hard to have this conversation. When they have said he needs to be kind and supportive toward other students, I've asked for specific, concrete examples of how he could demonstrate this--or how what, specifically, he needs NOT to do. I've explained that he doesn't understand when I use vague terms. They can't even tell *me* what they mean, so where to begin?

He got in big trouble for making a joke about a classmate "not getting the point" when the math teacher was teaching about coordinate planes--points on a graph--he was being punny, in his mind. It was perceived as bullying.

It took days to get to the bottom of this. Finally, when I explained to my son that the reason he was in trouble was because the joke was at someone else's expense, he understood: "So, if I had said *I* don't get the point, it would have been funny?" Yes, dear. He had thought all along he was in trouble because the teacher didn't get his joke and didn't think it was funny--which struck him as unjust and made him angry (which seems to be his go-to emotion in these cases).

He is pretty thick-skinned and doesn't get his feelings hurt easily--I guess I should be grateful for that, because it protects him. OTOH, *I* get my feelings hurt, profoundly, on his behalf. I guess I need to toughen up. Hard to do. I am a counselor and work with kids (many of whom have diagnoses) and adults, helping them with emotional issues. So I have a pretty high awareness of how hurt people can be and the damage that's done in school for kids who march to their own drum beat.

I do know that my child is still emotionally intact, thank goodness, since we speak that language at home all the time. He told me the other day that I am the only one he really trusts, because he knows that I would never intentionally hurt him.

I want school to be a safe place for my child.

I hear you and empathize.

My go-to is to keep trying to get the most important players at school to understand. If the teachers won't change, the administration and/or district special ed director must be involved to insist on change and appropriate placements for next year. Perhaps the neuropsych will be willing to come to a school meeting and explain things-- we have found this to be a useful strategy.

The neuropsych should at least certainly put in their report very detailed recommendations for what the school plan should include. Sometimes having it in writing from a specialist helps school to understand.

Yes, one does toughen up as a parent in this business. I fix what I can, I do not allow abusive behavior from teachers, and I teach DS as much as I can about how to not make mistakes twice. At the same time, a lot of this experience is going to produce learning for him. I think that a person with interesting wiring does have to adapt a lot in order to function in the world--I do not believe that this kind of learning has to be unpleasant, but we've all had unpleasant learning in our lives. I do not excuse ANY of what that school is doing to your DS-- highly inappropriate and must be stopped-- but if you keep working on making school appropriate while also informing your DS on how to respond better, I believe this learning can be important for his eventual success. That is a highly calloused viewpoint, but it's where I've gotten to after 10 years in the special ed biz.

I do talk with DS about advocating for himself, as well-- that is an ongoing conversation. He is learning to solve problems politely, ask people what they mean when he might have misunderstood, keep himself in check rather than flipping out, etc. Ultimately, these are good survival skills.

I've not seen this messaging - can you point me to an instance of it (print ad in a magazine, online video, etc)?
Also have you contacted them with facts which counter specific inaccuracies in their advertising?

Although I've not seen what you refer to... unfortunately, amongst organizations serving special populations, including gifted, some focus more on growing the industry and less on serving needs.

Indigo, if you google, you will find many critiques. I don't have time to dig them up for you.

See, for instance, http://www.forbes.com/sites/emilywillingham/2013/11/13/why-autism-speaks-doesnt-speak-for-me/

Are there any resources to aid in helping a child understand himself better, and learn to ask for help when needed? My son has a huge deficit in that area. He ignores problems and doesn't communicate what's going on. Huge disconnect between cause and effect. I wonder if a formal curriculum might help him increase proactive behaviors.

DS found this book very interesting and useful (when he was in 6th grade, I think).

http://www.barnesandnoble.com/w/be-different-john-elder-robison/1101558806?ean=9780307884824

So much of our help has come from allies within school-- the few people who are willing to teach instead of scold, again and again, until the job is done. Are there teachers or guidance counselor or someone who DOES get it? Can you enlist their help? DS has two adults within our school whom he trusts deeply, and whom he goes to for problem-solving help during the school day as needed. Because they are colleagues to the other teachers, they can "translate" and help DS navigate the particular situations arise.

The adults in Boy Scouts and martial arts have also been extremely helpful teachers/mentors for DS. It helps to have on the spot guidance when something goes wrong (or is about to go wrong). This kid really does take a whole village.

And a ton comes from us parents. Sometimes I am worn out from explaining the world to DS and DS to the world. I keep doing it anyway.

Thank you for sharing this link. In exploring its contents, I see the 2013 article begins with criticizing the symbol of the blue puzzle piece, and goes on to include this link to a 2009 article.
This article goes on to mention a specific video which was immediately pulled when some expressed offense.

From the article, evidently what was intended as an outreach (encouraging families to investigate quirks) and empathy (sharing personal experiences of the exhaustion and difficulty in dealing with ASD) came across to some as eliciting "fear and pity."

Possibly some ideas may have been better expressed by the organization in their video with fact rather than left open to interpretation. For example:
- Rather than stating the number of children being diagnosed, the video is described as stating: "I work faster than pediatric AIDS, cancer and diabetes combined."
- Rather than stating divorce statistics, the video is described as stating: "And if you are happily married, I will make sure that your marriage fails."
Many (although not all) people may prefer straight facts and numbers. Hopefully the particular organization has reconsidered its approach to raising awareness.

For future readers wishing to learn more about this controversy, it is discussed in some detail here.

So far, they have not. I've seen further videos since then. Sensationalism is apparently excellent for raising funds.

Unfortunately. Unfortunately. Amongst organizations serving special populations, including gifted, some focus more on growing the industry and less on serving needs. (So glad I did not mention that particular organization in my post to begin the thread on Autism Awareness Month.)

Indigo, if you want to debate the message of Autism Speaks, could you please take it to another thread? Eco, please copy and paste this one somewhere safe, so you don't lose it if it gets disappeared by the mods for ideological bickering.

There is no debate, for I am not taking an opposing view. There is simply request for clarification for statements made by other posters, expression of appreciation when clarification was provided, and agreement.

My posts seem to be on-topic as:
1) the request for clarification was based on another member's post,
2) the OP is considering ADOS for possible ASD diagnosis; Being aware of the better resources (and reasons why some resources may not be as valuable - or may be more controversial) may become important if an ASD diagnosis is forthcoming.

In the lower right-hand corner of the gray dialog box, there are various links to click on:
Reply - Quote - Quick Reply - Quick Quote - Notify - Email Post.

If you click on the Quote option, for example, you will find the post to which you are replying copied into an edit window, prefixed by
' [ q u o t e = author ] '
and with a suffix of
' [ / q u o t e ] '.
These can "nest" quoted conversation about 4 layers deep, if I recall correctly.

You may edit to remove all but the particular snippet you are addressing with your reply.

If you wish to address more than one snippet, you can edit to enclose subsequent snippets in similar quotes.

Each quote, and/or each nested layer of conversation quoted, requires a matching set of
prefix [ q u o t e = author ]
& suffix [ / q u o t e ].
In this example the '=author' is highlighted in a different color to show that it is optional; The prefix may simply be [ q u o t e ]

Note that in each e x a m p l e in this post, spaces were added between each character in order to prevent the example from being interpreted as an actual prefix/suffix creating a quote.

Agree

Thank you for your concern about keeping the forum friendly and useful for all; I share that concern.

There was no debate, for I had not taken an opposing view. There was simply request for clarification for statements posted upthread, expression of appreciation when clarification was provided, and agreement. The better resources, as expressed by the article you provided, were subsequently posted to another thread... several minutes prior to ElizabethN's post suggesting I do so.

My posts on this thread seem to be on-topic as:
1) the request for clarification was based on another member's post,
2) the OP is considering ADOS for possible ASD diagnosis; Being aware of the better resources (and reasons why some resources may not be as valuable - or may be more controversial) may become important if an ASD diagnosis is forthcoming.

Indigo, because we were discussing Eco's struggles to get her DS an appropriate education, it does seem apt to locate the neurodiversity/Autism Speaks discussion in another thread.

While the conversation has ranged from commiseration to testing/diagnosis, advocacy efforts, behavior, resources, and use of the forum features... a far-ranging conversation during which I did *not* introduce "neurodiversity/Autism Speaks" but rather sought clarification of your post...

Yes, it appears there are now two threads discussing what information/resources make a helpful outreach -
April is National Autism Awareness Month, created 04/11/2015
and
Neurodiversity, created 04/25/2015

I probably couldn't explain all the weirdness that has made this situation extra difficult to navigate, but I'll give another example (there seem to be way too many). The counselor for the 6-8 students is the MOTHER of one of the core subject teachers; in fact the one I eventually reported to the coordinator for not following the 504 piece about parent communication (I didn't want to--tried to complain generally, but the coordinator insisted on knowing who).

I believe she is probably a really good counselor, and under different circumstances would have been a great help (and may still be, next year).

When I spoke with her a couple of weeks ago, though, she acted like a complete nutcase and was abusive toward me on the phone--contradicting herself, telling me my thinking is distorted if I've felt anything but concern from the teachers (when the teachers were not honest in the 504 meeting--on points of fact, such as whether or not they have common planning time, for instance...and not correcting the coordinator's statement they had all been signing my son's assignment planner, when they had not). I chose not to address those points because it would have felt petty to me and I really just wanted a good plan going forward. When I explained that--she told me that *I* was the one being dishonest, because I wasn't willing to make myself vulnerable in that meeting (huh--what could be more vulnerable?)

She told me I am "consumed" with this, when all I've done this year is come to meetings arranged by others, and write a weekly email, as per 504. In the next breath, she said I need to be an advocate for my son.

She told me I need to get counseling.

The conversation with the counselor was so upsetting, and caused such an enormous amount of cognitive dissonance, that I immediately typed out the conversation and called my therapist (yeah--I have one). My therapist confirmed the conversation was completely inappropriate, bullying.

I guess my point is: I don't think the counselor is going to be my son's biggest supporter. Ha! Except it really isn't funny. I hope I'm wrong.

This program is kind of a thing unto itself, a little bubble in a large high school. The coordinator is only on site PT, the counselor even less. So I don't think there's much reason to hope for a lot of support. My son probably wouldn't seek support anyhow, though, except through his friendships. And the band teacher likes him a lot, so there's that.

Oh yeah--the counselor stated the teachers had gone "above and beyond" for my son. When I asked her in what ways--she had no answer. I said I assumed she didn't mean the 504, since that would not be considered extraordinary, especially when it's not been implemented consistently.

I am pretty sure that may have been what caused the rift. Or at least part of it.

I'm so sorry this is happening.

I'm proud of you for asking, and gently probing, for facts behind the opinions which the counselor shared.

In general, parents may wish to document each encounter. This may be in an advocacy notebook, and contain date, person(s) present (by name and/or tile, role, etc). Much of your documentation you may wish to keep for yourself at home. It is a ready resource to pull facts and information from when needed. You may wish to keep your documentation statements short, factual, unemotional. The teachers' inconsistencies and contradictions are, I think, quite important to document.

From the documentation you prepare, you may choose to send a summary of the meeting or phone call (teleconference). At the end of the summary you may wish to list next steps (as you understand them to be from the encounter). You may also wish to list questions. Sometimes enumerating the items helps ensure each one is answered/addressed.

There is a lot of advocacy information on the forums. The website wrightslaw and the book From Emotions to Advocacy are often helpful.

This old post gives one possible resource for finding an advocate.

This article from the Davidson Database, Finding A School That Fits, has a 2e emphasis and discusses finding an educational consultant.

You may have read this in posts elsewhere on the forums: a crowd-sourced list of meeting tips.

Oh, for heaven's sakes.

Because this situation is so abusive, I would not hesitate to "report up" the food chain until you get to someone who understands that the school is violating your child's rights. Do keep documenting everything, and be ready to show that documentation to the administrator you find (building principal or district-level) who will listen.

What is the principal like? Or does the coordinator have sole control over this program? Who is responsible for implementation of IEP and 504 plans in this school and in your district? (Some schools have a Coordinator of Instruction or similar, usually reporting to the principal, who deals with those plans.)

Some states have an "office of exceptional children" or a "legal rights service" that will provide free legal or educational advocacy in these situations. It does no harm to place a call to these folks and see what they can do to help you.

You may also want to google your state's department of education and find out who the special ed people are on that level. I have had to call in the state to fix horrid school situations. Sometimes this can be done informally (the state folks make a phone call and suddenly things are better); sometimes it's a written complaint process. This is not a step to take lightly, as it may make enemies locally. Therefore it's not how I like to work. But sometimes it does get a problem solved and it's good to know what all the different forms of recourse look like.


Keep documenting like this. In ink, with dates and times. Print all hostile email and stick it into the binder too. The paper trail helps you demonstrate how badly everyone is behaving when you need to.

Stay so calm in these interactions that everyone can notice that you are the sane one. This can actually be very intimidating to people who are behaving badly-- they expect you to run away.

If you need to, you can ask to record meetings with school personnel. (In many states it is illegal to record people without their permission, so you do have to ask). You can say "I'm finding it hard to take notes; may I use this recorder?" and put it down on the table. Again, can't do it without their consent, but once the recorder is on it can markedly change the atmosphere in the room, as no one is willing to be abusive on the record.


Keep that sardonic wit handy. You may need it again.


This may sound crazy, but I think that in parallel with going up the chain of command you should also talk with the band director and enlist his/her support. You might even be so bold as to ask the band director for suggestions about helping other teachers understand DS. He may even be willing to intercede for DS under some circumstances. At the very least he can be an identified safe haven and a person who can be called in to help DS as needed.

I feel for you. Hang in there.

DeeDee

[quote=DeeDee

Stay so calm in these interactions that everyone can notice that you are the sane one. This can actually be very intimidating to people who are behaving badly-- they expect you to run away. [/quote]

This actually made me laugh out loud--the "sane" thing, which I have been seriously questioning.

It's been suggested to me that the teachers may feel threatened by me, because I have gifted master's and taught in this program, and they are new teachers. It is difficult for me to conceive of anyone finding me threatening--my approach all year has been "I know this is frustrating, please help me crack the code." But there is some nonsense I won't allow to go unchecked. I ignore things like their lack of consistency in following the 504, but address language that is not behavioral/descriptive of my son's behavior and instead assumes an understanding of motivation. i.e., if they say "he doesn't care," I say, "it may seem that way, but it is a skill deficit, not a character or personality issue." It really pushes my buttons when teachers tell me what my child is thinking or feeling--particularly when I don't believe they've bothered asking him. Keep it behavioral, please.

Basically, I think I've approached this all completely upside-down. They are not interested, clearly, in understanding my son and there is nothing I can say that will make them *like* him. So I am letting that go. He has plenty of adults in his life who find him delightful. I went into it with the frame they would be interested in him as a person but I think that is not the case.

It takes a LOT for my son to emote, he is a stoic kind of guy. But he has done a fair bit of crying this year about school, and told me at one point he felt "hated and unwanted." I felt eviscerated but he moved on.

I just heard yesterday, that another friend's child, actually failed the Art class that we're struggling with right now--and was not asked to leave the program. That gives me a little bit of courage.

I am going to print out the emails, etc., as you suggested and create The Binder. It irritates the heck out of me that this might be necessary. I have an acquaintance who is extremely well-versed in advocacy (and is a former teacher, now homeschooling) because of her own son with autism, who has offered to come to meetings with me as my "spunky advocate." I think she will be a powerful resource. I become some overwhelmed in these meetings, when I sense the antipathy toward my child, that I freeze. That, and I'm introverted by nature so need time to process, not good at thinking on my feet.

I'm still stunned by this entire year--I do feel "consumed" but wouldn't any parent, watching her once happy, excellent student, suddenly sucked down the drain? It's somewhat comforting to know that a lot of children struggle with the MS transition, but only somewhat.

Does anyone manage to work full-time while raising one of these children? :P I feel like I need to hire a full-time assistant to help manage all the paperwork and another one to follow my child around so he doesn't lose his shoes!

I will read the Emotions book, immediately. That has probably been the biggest problem. I am more interested in the emotional life of gifted students, generally, than the academic side--which is why I left the program to get counseling master's.

DeeDee: as for your question re: The Principal. There is a building principal at the high school, but the principal over the gifted teachers is in another building. And she is unethical, generally, and was a driving force behind my leaving the program, as well. There was a mass exodus of teachers the year I left. That is one reason my son's three core subject teachers are all brand-new, inexperienced, and under-qualified (provisional gifted certificates). The one who has been there longest is in her third year of teaching. UGH.

Honestly--the entire program is very dysfunctional. OTOH--there is no better option at the moment, particularly since my son feels the social interactions are "worth it" and he loves going to see his friends and playing in the band.

The time-consuming nature of advocacy can definitely impact family lifestyle and priorities. Some may say the only thing worse than spending time documenting, is spending MORE time because you did not document... things can pile up quickly.

Documenting can encourage one to boil down each encounter into salient facts. For example, in a post upthread it was mentioned that the 504 is not being followed. You may wish to keep documentation on what is not being done that should be, as well as what is being done which should not be.

Only slightly different from other advice given, it is often possible to keep all sides of the encounters "sane" by focusing (and re-focusing) on facts, stating (and re-stating) your common and unifying objective (which is to facilitate access to appropriate educational experiences for your child), staying calm and unemotional, seeking information, not presuming certain underlying motives but rather asking for clarification, and realizing when something seems to push your buttons and feels internally like it may trigger a negative emotional response... do not yield to that impulse but rather make a note of it. During an encounter (such as a meeting or phone call) or from one encounter to the next, you may find that you are repeating yourself but that is OK.

You mentioned upthread that your father is an attorney. Might he be interested to review the information on the wrightslaw website, and see how it may apply to your advocacy efforts? This might also help increase understanding within the extended family, as to what you are dealing with, and build support within the extended family as a safe place to talk about circumstances and to vent.

We had in the 504 that the teachers were to make sure DD writes in her planner what the homework is, and they were supposed to initial it even if there was no homework. Well, they weren't doing this at all. It was like we signed the 504 and no one bothered to even read what they signed. Did they think it was just a list of tips and not an actual legal document? I don't know. Unfortunately, most of the 504 was written in such a way that there would be no way to prove if it was or was not followed, for instance give her warnings for transitions and scaffold assignments. The teachers just blew off things like that. Almost everything was "If DD requests..."...well, they could just claim that DD never requested anything. After a few months, the teachers were aware that I was complaining about the 504 (long story), but I did not confront them directly. One thing I started doing was I ripped the pages out of her planner/calender when the dates passed. I think it scared them a little bit. They knew I had these pages at home with proof that they were not writing in her planner or initialing it. Suddenly they started doing this. If they had asked why I was ripping out pages, I would have just said that it makes it easier to find the appropriate pages in the book, if the old ones are taken out. I guess what I'm saying is that you should collect evidence that the 504 is not being followed and if you can make them aware that you are collecting this evidence, or might be collecting the evidence, without coming across as adversarial, that might help.

and
Well said.

We had a change to 504 at semester that DS is to take a photo of daily assignments with his iPad. He doesn't have much homework, unless classwork isn't complete. 504 coordinator told teachers ADHD child will not process verbal instructions to "take it home if you're not finished."

That seemed like a good plan; however, he is only taking the photo in one class--math--where, ironically, just doing this seems to have changed his behavior and he is now completing nearly all assignments in class. That teacher checks student planners. The rest do not.

So when I look at his 504, it doesn't actually say they need to check, just that he needs to record assignments. In this case, technically, they are not failing to implement. It's just poor verbiage. If he can't remember to write down assignments, he is unlikely to remember to photograph them.

There is also a 504 accommodation that he will have "peer assistance" with organizing. The teachers said this didn't work, so they stopped doing it. I'm not crazy about that accommodation, anyhow, so I didn't push it.

I think we need clearer instructions. The district standard is that all assignments are supposed to be posted weekly, online, but for some reason the gifted teachers aren't doing that yet. I hope they will next year--that would help enormously. The pattern so far has been DS will do very well for several weeks, I will grow complacent, and then there is a sudden plunge into incomplete work and poor grades. He's been wildly inconsistent.

Also: one teacher, at least, did NOT know what the 504 is and how it functions. Because they are all brand new teachers. I didn't hold that against him--poor training--but it has definitely effected my son negatively.

Because teachers weren't responding to weekly email, I coasted along for several weeks believing everything had leveled out. In fact, it seems like DS is having a medication issue (he changed meds and it went well for awhile, then he tanked w depressive symptoms) that needed intervention a long time ago...but since I didn't know, I didn't know. And we are unable to get "urgent" appt. with psych.

I think it's really a learning curve for me and the teachers. I need to quit being so *hurt* by everything and they need to quit being so defensive.

Hi Eco,


I know-- they can make you feel like that when they are ganged up to do the wrong thing, and you're there in the wilderness saying "wait-- is this ethical? is this appropriate or normal?"

Trust me. Your expectations seem very reasonable and what they are doing is awful (and a violation of civil rights).

We have BTDT and gradually been able to negotiate for change. Sometimes it's impossible-- much depends on the people and structures in place locally. But sometimes it can be done.


That's the right approach. There may be a limit on what advice they're willing to take from a parent, as well. You always want to leave their sense of their own professionalism intact.


Yes.


I would reframe that. Somewhere in the system there is an incentive in place that is making them choose to not acknowledge or address his needs. They may have learned that they can get rid of children who are too much work. They may be rewarded by other parents or administrators for having only "perfect children' in this program.

Given the chance and the right incentives, they will probably do the right thing (unless they are not competent to). That's behaviorism too.

At this point I am betting that those incentives will have to come from the district level.


Feelings are like weather; they do pass. However, I would still document the heck out of this and tag it to the incident that made him feel this way. "On the day when the teacher reported X, DS told me that he felt Y."


If you can find other parents to talk to, and encourage them to speak to the district too, that could help. Dysfunction needs to be exposed for what it is.


WONDERFUL. It is very important that you feel someone has your back, especially if they are the one who can help think of the right thing to say.

DeeDee

Yes, there is information available on how to create an effective 504, including
1) Davidson Database, IEP / 504
2) Understood.org, 7 tips for developing a good 504 plan
3) About.com, special children - sample 504 plans
4) Kids' Health - 504 education plans
5) GreatSchools.org - 504 plan
6) Wrightslaw has lots of information - use their "search" feature to find '504'

I do have a job. I also do hire helpers-- mostly college students-- who can help with homework management, leaving me more free for other kinds of management and basic parenting.


Clarification: From Emotions to Advocacy is about how to get from the lost, desperate feeling of seeing your kid go down the drain to making change that helps.

Yes. That they are new CAN be a good thing-- not yet set in ther ways. It does mean you have to treat them as professionals, while also helping them see what's within their purview as teachers. (includes: following the plan!)

Edited to add: this is also a teaching job for you. Persuading them to think again and know their obligations is a huge job... but it might not be totally unlike your old teaching job in certain ways...

DeeDee

That's how I took it, I skipped a step in my communication. I've been feeling so emotionally overwhelmed, and my orientation is toward emotional content, that I've focused on the wrong pieces, I think. It's been a colossal waste of time trying to influence the teacher's empathy by "painting a picture." I have to get out of that mode and into facts.

I think you'll be pleased with the power for change that comes with this approach.

Eco..I can't provide much advise but your comment about working full time while raising a gifted 2e child is challenging. I made a comment to another parent on this board that I felt like I was a full time case manager trying to manage my child's education and care. I seriously need to consider starting a school specializing in 2e kids. There is such a need.

Laurie, how about you move here first, then start the school... :-)

No way, I'm keeping her in my area!

That is a ridiculous accommodation. Even non ADHD kids need help at this age for organization. Other kids can't be expected to 'help' your child in this manner. My DS's teacher at this age expected the kids to have a 'buddy' in class they could ask about missed assignments if they were sick or missed school. Did not work, the other student was not at all cooperative.

You need to go back to your team and try and set up some better accommodations. It's totally normal to expect students & teachers to keep contracts that both student & teachers sign to check that they understand the homework. This is done in H.S. with failing students, and should be fairly common in junior high. My son had to do one with one of his teachers this fall and it really helped. This was a teacher who is known for miscommunicating what homework was due and the contracts was as much for her as me.

Good advice, thank you. I don't know how often I am allowed to "go back." Clearly, what we are doing isn't working very well.

I agree it's a dumb accommodation, especially for 12 year olds. It's not some other child's responsibility to help my child. If *I* have a terrible time getting him to self-regulate and his teachers do, too--it's hard to imagine a kid could do it. LOL!

The other thing that's somewhat salient: the core teachers in this program only have 15 students per class, maximum, in block schedule format. They teach 40-45 students total. It's not the average MS situation...the rationale being the students need extra attention. LOL!

The kids take HS classes, too. One in 6th, two in 7th, not sure how many in 8th. So in those classes, the demand-on-teacher is more typical.

I am not sure where the LOL'ing came from. Suddenly it struck me as outrageous how little support my son has received this year.

LOL!

You can ask to revise the plan anytime. Having the new report will certainly be an occasion for doing so.


Indeed :-)


Well, OK then-- bring on the extra attention!


I will take the laugh over the weep any day. Well done.