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    Joined: Dec 2016
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    @aeh I've flagged this to S1's psychologist and asked her to take a look/double check the numbers. Will see what she says.

    When we originally received the report it contained errors that I flagged to the examiner (e.g. incorrect age of previous testing, and one reference to another child's name and DOB). Taken together it seems plausible that the examiner cut and paste S1's information into an old document, perhaps to save formatting work, but failed to edit it completely.

    What I am taking away from the exchange (my goodness, thank you THANK YOU for this feedback) is that S1 has some pretty significant learning disabilities, and a developmental coordination disorder - neither of which are being addressed in therapy. He receives CBT for anxiety and the focus has been on medicating him wth guanfacine or prozac - long story short, he is not medicated.

    What I should do as his mother to better support the LD and developmental coordination disorder? I'll note that:

    - His drawing skills were not only delayed, but he went through a long phase of scribbling and ripping up both artwork (in preK) and letter formation (in K and 1st). This caused a lot of classroom disruption, catalyzed reprimand, etc..

    When he learned to read (a multi-year, multi-expert battle), he never really decoded. He is a "whole-word" reader (he sees a string of letters and guesses a word, usually correctly). When reading aloud, he often skips or inserts words (it feels like he scans, gets the gist and relates the gist).

    In sum, I have an increasingly sinking feeling that he is not remotely getting the therapies he needs. We are not on the right track, which is why we've made little progress despite years of therapy.

    The prevailing theory is that his task refusal at school is anxiety-based (hence the emphasis on medication). The hypothesis is: quell the anxiety, the behaviors will fade out.

    It seems plausible and worth investigating that while there may indeed be anxiety (e.g. performance anxiety) underpinning the task refusal it is the LD and developmental coordination disorder that are the Prime Movers.

    If he has trouble coordinating visual inputs and planning motor outputs, it is no surprise writing is so hard. It also fits the pattern of strong vocabulary (auditory memory) and weak spelling (visual memory).

    I'm going to wait for the initial wave of feedback about the scoring then ask how we should think about the LDs and DCD in terms of his therapeutic plan -- and see what the team suggests.

    I'm incalculably grateful for the thoughtful feedback. I realize S1 is not in the same league as the children the forum serves, but nothing has been remotely as helpful to me as this thread. So I hope I can stick around, if that's OK.

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    Aspieration I pm'd you wink

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    @EmmaL wrote you back. Thank you so, so much for reaching out.

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    Aspieration, sorry I'm in a rush once again, but I wanted to let you know my 2e ds has developmental coordination disorder. DCD impacts each individual differently but for my ds it is the root of significant challenges with both handwriting and verbal communication. The root of the challenges wasn't obviously clear to anyone (including his parents) when he was in early elementary, and we only learned of the DCD after finding ourselves through a neuropsych eval after we'd desperately sought help from our pediatrician because his teacher was convinced he had ADHD and that diagnosis just didn't seem to fit the child we were parenting at home.

    I only have time for a few notes -

    1) Our ds also ripped up his school papers. That's a classic example of what looks like a behavioral issue but is more likely a child who is extremely frustrated because they are faced with an overly-challenging task.

    2) We didn't realize our ds had verbal communication challenges because he talked a lot. Instead we first began to realize (after his diagnosis) that he had handwriting challenges, and then after we were able to get handwriting accommodations in place we started to realize he was struggling to answer open-ended questions (via handwriting). When he was just a bit older, in 4th grade, he finally was able to articulate to us that he had the very same challenges with verbal expression - (expressive language) - we just hadn't seen them because he was so talkative.

    3) DS has been through counseling a few times - it's never really worked out, but it was recommended to help him learn how to cope with the anxiety etc he feels due to his DCD challenges. One of the counselors was convinced he had ASD - just as one of his teachers had been convinced he had ADHD. The thing in both of these cases was the teacher and counselor were seeing behaviors and symptoms that fit diagnoses that they were familiar with. Neither teacher or counselor had completed a thorough global eval so they didn't see the larger picture, and they also weren't familiar with DCD. Our neuropsych has a Venn Diagram which shows significant overlap in symptoms between the three. While they can absolutely co-exist, it's really important to understand what is at the root of each behavior so that you can be sure your ds is getting the therapies he needs that *will* make a difference. The good news for you is, your ds is still very young (in the grand scheme of things). He's extremely frustrated right now, but if you're able to get accommodations and therapy in place to address his DCD you might find his anxiety and behavioral challenges are reduced.

    Our ds had extreme anxiety which was morphing into clinical depression when he was eight, prior to diagnosis. It had become so bad he was imaging horrible things happening to him at home, where he had no reason not to feel safe. I'll never forget the day I knew we had to do something, anything - it was a beautiful Saturday afternoon and he was terrified of going out into our yard because he thought "bad guys" were out there. All of that anxiety, all of the fears, all of the everything that was so psychological, went away when he was given accommodations at school and at home for his writing challenge. Which is not to say it was then all lollipops and sunshine for the rest of his school years - he needed IEPs and accommodations and years of language therapy, and a ton of support and help with social challenges and organizational challenges. But understanding the diagnosis allowed us to find appropriate help and support, which in turn gave him the opportunity to learn how to cope with his challenges.

    He's a junior in high school now and doing really well. Your ds will get there too.

    No time to describe the details of it now, but we did have to change school programs. The issue ultimately wasn't the program perhaps as much as the willingness of school staff to be supportive.

    My advice for you right now, today, is to start learning as much as you can about each of your ds' diagnoses and thinking through the behaviors and challenges you see and think through what might help him. Google "diagnosis + accommodation" etc.

    Continue to let us know what questions you have - and know that you not giving up on him is going to be the thing that ultimately matters more than anything else for your ds.

    Best wishes,

    polarbear

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    I have so many questions, but first thank you, THANK YOU for sharing your story and for connecting with me about your experience. Polarbear cub is lucky to have such a thoughtful, involved parent.

    Some questions. When he was my son's age (young elementary):

    Was your ds always been able to complete work independently? For example, homework? If so, was he able to complete it within a reasonable amount of time?

    Has ds always respected authority? Would he talk back or argue with teachers? Would he disregard rules or "opt out" of participating in classroom activities?

    Was he able to make and keep friends? Play with new kids at a playground? Have playdates and maintain a friend's interest/"host" them (rather than slip into parallel play)?

    My son can do homework independently but it seems to take 5x? 10x? the time it should, and he needs incentives like baked treats. Having me sit by his side nagging him doesn't seem to help speed things up much and actually can sour us both.

    My ds has little regard for authority. He will argue/talk back to teachers, and even say rude, hurtful things if he is upset. Going to the principal's office doesn't register as a big deal.

    Worse, he "opts out" of almost the entire school day. As in, when given a worksheet will just say no thanks. We do the worksheets he refuses to do at school at home. He does not join the class on the rug, he often opts out of recess. All he wants to do all day is read.

    To be clear, he is a happy, excited, enthusiastic child, highly engaged with the world ideas and bursting with interests from world religions to the Vietnam War.

    My ds has always been liked, even loved, by peers. Every year a parent will approach me and say, "Oh, your ds's mom! My son/daughter loves him!" And yet. When we've had kids over for playdates, ds will lose interest after some period of time (about an hour) and "lose himself" in his legos. Or start building something without involving the friend. If I intervene and try to encourage hosting, he can get upset (making it very uncomfortable for the friend).

    Since he is being asked to leave his school, we are consumed with school placement first and foremost. He's been rejected by two of the three schools we've applied to on his behalf. Too behavioral. So we wait and hope the third will take him.

    It's normal to worry about college, right? The third school sends some kids to college, some to group homes. I really struggle with that. But I also can't deny he needs a tremendous amount of support right now. We've tried mainstream school and it doesn't work.

    Clearly he needs a special needs educational environment and lots of explicit teaching of basic social mechanics. He needs teachers trained to find out 'the why' when he struggles and help him build skills.

    In the meantime, we've reached out to his psychologist with a very straightforward request to use the new information in the neuropsych eval to help us identify the treatment priorities (I'm so grateful to aeh for flagging all the mistakes on his percentiles - aeh was absolutely right and they are re-checking the entire report now for mistakes).

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    Are you familiar with the resources at the Wrightslaw website?

    As you move forward, the resources at Understood.org may also be of some help.

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    Indigo thanks.

    As for the legal side, we have a lawyer retained from the top special education legal firm in NYC. She has been very skilled in guiding us.

    The understood website advertises heavily in NYC and I've checked it out. Some nice resources and articles. You can tell dedicated non-profits are behind the site -- they focus on the right spectrum issues (e.g. how parenting an SN child impacts marriage).

    Thank you for the recs.

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    Originally Posted by Aspieration
    Some questions. When he was my son's age (young elementary):

    Was your ds always been able to complete work independently? For example, homework? If so, was he able to complete it within a reasonable amount of time?

    No. He participated in any kind of experiential project work - which there was a bit of in the school he was in, but other than that he completed very little work. At school he spent most of his time looking off into space or staring at his paper if written work was required. He attempted to complete the quick math facts practice (had to write 20 equations in 2 minutes), but never completed more than maybe 5 or 6, and was never able to move "up" in mathematical difficulty because he wasn't writing enough equations down within the time limit. Homework came home in packets of worksheets, all of which seemed like they should be easy for him, but he protested, through fits, screamed, tore up his sheets of paper, never got past page 1 of any of his packets. We were hopelessly clueless as parents, because we could see how "easy" the work seemed to be, we knew how intelligent he was based on the thoughts and ideas he shared with us, and there was this huge disconnect.. so we unfortunately ignored it thinking he was just annoyed that the work was too easy.

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    Has ds always respected authority? Would he talk back or argue with teachers? Would he disregard rules or "opt out" of participating in classroom activities?

    Our ds has, but that's part of his innate personality. I'm not sure "respect" is the technically correct term, he's always felt it's better to just give in and accept the situation he's in, rather than fight back. He did, however, opt out in other ways - by giving up primarily. He was too scared to let anyone know he couldn't do what the other kids were doing, or that he didn't understand what he was supposed to be doing, so he just gazed off into space and didn't participate. I have a younger dd who is also 2e, and she's a totally different personality - she doesn't want anyone anywhere to ever know that there's anything of any type she can't do, so she's stealth on the challenges and erupts like a volcano when things don't work for her.

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    Was he able to make and keep friends? Play with new kids at a playground? Have playdates and maintain a friend's interest/"host" them (rather than slip into parallel play)?

    This was the hardest part of elementary school for *me*, because I have younger dds who are very social, and I'm an extrovert. DS had two friends in kindergarten that were friends basically by default - one was a girl who thought ds was really cool because he was obviously smart when he talked, the other was a boy who also didn't really fit in and who's mom needed me to take care of while she was working at least one day a week. As ds moved on past 2nd grade, those friends (both nt) made other friends and expanded their social circles, and ds was left with basically no friends. His expressive language disorder made it extremely difficult for him to understand how to communicate and participate in typical elementary school playground and classroom situations. We didn't realize the extent of his expressive language challenges until he was (ironically) old enough to explain them to us... which was in 4th grade. We weren't able to get help through his school, so we found a private SLP who he worked with from 5th - 8th grade, and that helped him make huge progress.. but it was also slow progress. Changing schools around this same time helped too, because we were able to find a school where his teachers specifically mentored him and the curriculum supported him in a way to support development of his expressive language skills. The other students were much more open and wanted to be friends with him, so that in turn gave him more opportunities to basically learn how to be a normal kid (who still doesn't talk a lot) around other kids. The other thing that helped him as he moved through middle school and high school was finding a hobby he is truly passionate about - it gave him a way to be himself, which helped tremendously with self confidence.

    Back to when he was your ds' age - he really didn't play with other kids when he was around them. We did playdates (orchestrated by parents) but they always involved going somewhere and doing something specifically to keep my kids and the other kids entertained (I have three kids so it's usually crowded around here...) DS was notably different from my dds in that my girls loved to have friends come over and just play - dolls, house, make videos, cook, play games, draw together, whatever... they did a lot of pretend play. DS, otoh, worried a lot and experienced stress over having a potential playdate because he "didn't know what to do".

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    My son can do homework independently but it seems to take 5x? 10x? the time it should, and he needs incentives like baked treats. Having me sit by his side nagging him doesn't seem to help speed things up much and actually can sour us both.

    It sounds, from what you've written, that your ds probably needs help in some other way to get through his homework. If he has a learning challenge, and that's what's causing the long time it is taking to get through his homework, it's never going to get quicker or easier by offering treats or just sitting with him - he'll need remediation or accommodations that address what the true challenge is. Remember I mentioned my ds tearing up his homework papers and not doing anything in class? The reason was he's dysgraphic (issue #1) and he didn't know how to answer open-ended questions due to his expressive language disorder (issue #2). We started scribing right away after we found out he was dysgraphic, (he told me his answers and I wrote them out), and that made it possible to get through his homework - in approximately the amount of time the homework was *supposed* to take to complete. It didn't help with the open-ended questions, but it made it very obvious that the reason homework took so long was the handwriting, not the actual work.

    Today he uses keyboarding exclusively, and the only homework that takes longer than nt kids is math (because he finds using the computer for math also time-consuming) and writing (because he is still very slow with expressive language and open-ended questions).

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    My ds has little regard for authority. He will argue/talk back to teachers, and even say rude, hurtful things if he is upset. Going to the principal's office doesn't register as a big deal.

    That sounds very much like my youngest dd smile

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    Worse, he "opts out" of almost the entire school day. As in, when given a worksheet will just say no thanks. We do the worksheets he refuses to do at school at home. He does not join the class on the rug, he often opts out of recess. All he wants to do all day is read.

    Do you know how he's feeling on the inside? What happened with our ds was that he was opting out, and even though he wasn't having outward signs of behavioral issues, inside he was horribly anxious about everything and became very depressed. He seemed ok for a long time at home, but eventually what was happening at school became just too much.

    Every year a parent will approach me and say, "Oh, your ds's mom! My son/daughter loves him!" And yet. When we've had kids over for playdates, ds will lose interest after some period of time (about an hour) and "lose himself" in his legos. Or start building something without involving the friend. If I intervene and try to encourage hosting, he can get upset (making it very uncomfortable for the friend).

    I'm so sorry you're having such struggles with school placement. The only advice I can offer there is to realize that an answer now isn't necessarily the answer long-term, things can change from year to year. Try to take it all one step at a time (as much as possible), then move on to what you can tackle next.

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    Clearly he needs a special needs educational environment and lots of explicit teaching of basic social mechanics. He needs teachers trained to find out 'the why' when he struggles and help him build skills.

    He needs teachers who care enough to try to find out the "why" - but I think the first thing he needs is more info from a professional on the "why" - what's really fueling his behaviors, is there an undiagnosed learning challenge? It's possible that a sped environment is what he needs, or it might be possible he needs some other type of environment. It's really tough to know until you understand what's going on that's truly driving the behaviors. I'll also add that, for kids with high intellectual abilities... it's tricky. You already know that smile Having access to classwork that was at his intellectual level was key for our ds to actually make progress with the remediation work he needed to do to get past his challenges. I'm typing in a hurry and that sentence probably doesn't make sense... but it was really key.

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    In the meantime, we've reached out to his psychologist with a very straightforward request to use the new information in the neuropsych eval to help us identify the treatment priorities.

    You're on the right path - I hope the psychologist has some insight for you.

    Best wishes,

    polarbear

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    Polarbear your post sustained me through a lot of soul searching this weekend about what to do about S1's school placement (see questions at end of this post).

    I'm using Ross Greene's framework (from his most recent book, "Raising Human Beings") to organize how I'm thinking about parenting S1.

    1. Figure out who your child is (skills. preferences, beliefs, values, personality traits, goals)
    2. Get comfortable with it
    3. Help your child live a life congruent with it

    I do not feel - after all these years, three full neuropsychological evaluations, hundreds of hours of therapy - that we have a good view of step one, item one: skills.

    I guess this is one of the big challenges of 2E kids.

    Firstly, parents are dazzled by a 2E kid's gifts and it is natural to want to focus on the good (the extraordinary!) that we see. So we might overlook or "explain away" evidence that there are challenges too. As in, oh, he's not interested in playing with peers because he's so far beyond them, intellectually. (And there may even be a grain of truth to it.. but we throw out the baby with the bathwater!)

    Secondly 2E kids, like anyone, prefer to feel and identify as talented rather than challenged and so they

    a) compensate for (hide) their challenges and
    b) may resent getting "help" for their challenges since getting help means admitting to said challenges, e.g. a learning disability (how can I have a learning disability if I'm so smart!?)

    I emerged from this weekend thinking: find out more, find expert help finding out what is going on under the hood.

    Assess, address, accommodate.

    The good news is that I am sure I will be comfortable with whatever we find because it is what it is.

    I have a superabundance of positive, sustaining feelings about S1. I have never met such a passionate self-learner. He wakes up wondering how the communism of Cuba and the former USSR were similar and different. He wants to know what to call Russia's current political regime, if not communism than what? (GOOD QUESTION! TIMELY QUESTION!). These questions bubbled out of reading books about 20th century wars, a book about symbolism, and reading about macroeconomics (a cartoon guide) -- those are the ones I see piled in his reading nook -- and making bold connections, synthesizing, etc. This is what profoundly gifted means to me. And it shows up in his vocab and information scores. S2 is bright. Great student. But there is nothing like this insatiable hunger in him. He does what is expected of him very well. S1 is driven by an internal burning fire. All I do is leave lots of dry wood around (in the form of books) but the fire does the consuming.

    Against this PG backdrop, is a child with difficulty doing below-grade math word problems (how many more chocolate chip cookies are than than the difference btw oatmeal and sugar cookies?).

    When he gets the answer wrong.. RIP, RIP, RIP goes the worksheet. And because THAT behavior is more glaring to teachers (and parents) we've been focusing on aggression, frustration management, etc.

    Not wrong, but not the whole solution!

    Today I speak with his psychologist about aligning the therapeutic strategy and school placement with needs.

    Question #1. Let's say the recommendation is to place him in a school for kids with autism and LD including minimally verbal kids (i.e. we ignore the gifted half of the 2E). Is that going to be OK if he's getting enrichment galore at home? Some of the kids in the school we are waiting to hear from and his psychologist (not a 2E psychologist, an autism expert) is recommending, albeit with some reservations, end up going to group homes.

    Question #2: If we go this route, anyone have experience navigating their kid from a SN school to a mainstream school in, say, middle school?

    I'll end with a positive story. Friday S1 helped another child who was having a meltdown, earning S1 much teacher praise. The child's mom passed along her contact info and asked for a playdate for the boys over the holidays. S1 said this boy is new BFF because "we both love science."

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    My 2E 6th grader has been in a spec Ed school since 3rd grade. It was a tough decision because the peers were not appropriate. But it was the only way we could get her the level of remediation her LD issues needed. As a 3rd grader she was placed in an 8th grade reading comprehension group - using audio books. It was still too low and too slow but she was so happy to be able to do it she didn't say anything until the end of the year. Starting in 4th grade she started a 1-1 high school literature curriculum. Also she has done enrichment projects on a topic of her choice since being placed at the spec Ed school. And she gets tons - and I do mean tons - of enrichment on the outside.

    Has it been perfect? No. And it seems she is now outgrowing what the spec Ed school can do for her.

    You can make it work but only if the special needs school is open to it. They may not do it perfectly or at the appropriate level but the effort makes a huge difference.

    My DD is a super sweet, emotionally mature kid. She is empathetic and interested in understanding other people. She gets that each of the kids she goes to school with is there for a reason and is working on what they need. Your DS may not have this skill so may experience it differently. Even with this skill she gets frustrated sometimes. Outside contact with neurotypical peers is crucial.

    Now in 6th grade DD spends one day a week in our district's pullout TAG program. Trying to decide best course of action for next year.

    My btdt advice is to address the current issue. Once you get his anxiety, frustration, ED or whatever is causing the meltdowns under control you will be in a better position to make decisions for what he will need in middle school.

    When I first arrive on the board the experienced parents told me it's a marathon not a sprint. 5 years later I can attest to that. One step at a time...

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