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    #246404 - 12/04/19 09:55 AM 2e? IEP help for 5 year old please
    yp44 Offline
    Junior Member

    Registered: 11/19/19
    Posts: 4
    My 5 year old received an ASD diagnosis a year ago. We were in denial, because he didn’t have any of the classic ASD symptoms, other than the intense focus on things that he’s interested in, and some social delay. However, his behavior became increasingly challenging at preschool, and now kindergarten. We sought second opinion and went to see a developmental-behavioral pediatrician, who thought he is not ASD, but was ready to diagnose ADHD, due to his very poor impulse control.

    Intuitively, we think he has some gifted traits. He figured out simple multiplication by himself (say, up to 5x5), and taught himself two-digit additions, and some three-digit additions. For a while he’s into astronomy and was able to sit through long planetarium shows, engaged and excited with lots of questions. He’s better/faster at LEGO than I do. He corrects my grammar mistakes. He is very curious and sometimes asks deep questions that surprise adults. However, his full scale IQ score is only 121. I wasn’t sure if he’s twice-exceptional, until I saw the “Matthew” case study here https://www.cde.state.co.us/gt/2e-l2-wkbk, and realized my 5 year old could be twice exceptional (or just normal with ADHD… I really don’t know at this point). What are your thoughts?

    His WPPSI-IV subtest scores are:

    Verbal Comprehension 98th percentile
    - Information 98th
    - Similarities 95th
    Visual Spatial 88th
    - Block Design 95th
    - Object Assembly 63rd
    Fluid Reasoning 87th
    - Matrix Reasoning 95th
    - Picture Concepts 63rd
    Working Memory 75th
    - Picture Memory 25th
    - Zoo Locations 95th
    Processing Speed 13th
    - Bug Search 25th
    - Cancellation 9th

    We are in the process of developing an IEP (eligibility is established due to his extremely disruptive behavior in classroom), but unfortunately our state doesn’t have a gifted/twice exceptional program. I know every kid is different, but would really love to know if there’s someone like him who’s traveled down the same path, and what worked/didn’t work. My main concerns are (1) compliance in the classroom (2) his ability to regulate his emotions to enable learning

    He had a functional behavior analysis done, and his very disruptive behaviors (hitting, ripping paper, pushing and throwing things, running around, screaming, attempting to leave classroom) can be mostly explained by (1) task avoidance and (2) seeking attention. He actually loves social interactions and initiates those interactions, not always in an appropriate way of course, but adults have been very patient and encouraging, given his age. He does really well one-on-one with an adult in a quiet room, but is a completely different kid in the classroom. He hates putting pen to paper, despite having really good fine motor skills. Wouldn’t practicing writing/letter formation, even one-on-one with me, but would happily draw/write if HE chooses to.

    He loves being read to, but his reading skill is a bit of a disappointment to me. He had good phonemic awareness early on, and using my other kid as benchmark, I thought he’d learn to read by age 4. He’s 5, and still not there. He seems to give up quickly and avoids hard work. It’s perplexing for me, because I also see how driven and persistent he can be in other circumstances. He seems to have poor self-control. I don’t know if it’s worth the struggle now, trying to get him to follow instruction, or is it something that he’ll grow out of, and I should give him a free pass most of the time, as long as it’s not a safety concern.

    We are about to start ABA. He currently has a one-on-two aide in the classroom, but that doesn’t seem to be sufficient. He will hopefully get speech (for social) and resource room pull out. What else could the school district provide to support him? His current aide isn’t a trained BCBA, and I feel like he needs social classes/groups, plus one-on-one support from a BCBA. But of course, that’ll be too much to ask from an inadequately funded school district.

    Thank you very much for your input!!!


    Edited by yp44 (12/07/19 10:12 PM)
    Edit Reason: omitted one test score earlier, filled it in now

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    #246423 - 12/06/19 11:45 AM Re: 2e? IEP help for 5 year old please [Re: yp44]
    aeh Offline
    Member

    Registered: 04/26/14
    Posts: 3592
    Welcome!

    It certainly can be frustrating when you have a child who doesn't fit any of the molds. This is definitely the right place to find other families with 2e children--but be aware that every 2e story is unique.

    In answer to the question of 2e or not 2e: the data you've offered does appear likely to be consistent with a 2e profile. Your DC has very strong verbal comprehension skills, in the Extremely High range, but processing speed in the Low Average range, bordering on Very Low, which is upwards of 3 SDs of range. He also has some notable disparities within cluster areas, namely between the pairs of visual spatial, fluid reasoning, and working memory subtests, each of which is 1.3 SDs apart. These inconsistencies don't necessarily invalidate cluster or index scores, but they do suggest that his on-demand access to various cognitive skills (other than language) is inconsistent, and may involve uneven development. In and of itself, that is also not necessarily a remarkable finding in a very young child (as young children tend to be difficult to test, and have a notoriously wide range of what might be considered normal), but it does point out some directions to look at, and to watch as he develops.

    For example, the magnitude of gap between his verbal cognition and his fine motor output efficiency often is accompanied by frustration (which impacts emotional regulation) at not being able to generate work products at the quality of his conceptual understanding. It's hard to persist in work when tasks that in one's mind ought to be quite easy don't turn out as well as one expects. In his case, he may actually find that his efficiency is even below that of his age peers (for completing accurate grade-level work), even though his reasoning is far above theirs. This would tend to feed into task avoidance. His high verbal cognition also suggests that he would find conversations with adults far more satisfying than those with age peers, who likely would not share his interests, or understand his vocabulary, which could feed into seeking adult attention. One way to address both of these needs would be to set aside time for appropriately engaging--but orally-completed--tasks one-on-one with an adult as anchor points in the day. E.g., in a half-day K, it might be a quick check-in the beginning of the day, to ground him for the day, and to give him a chance to get a few minutes of conversation of his choice off his chest (quick meaning 5-10 minutes, or even less), perhaps another check-in mid-morning, to praise him for whatever he's done well so far that day, and then a check-out at the end of the day, reviewing the successes of the day, and allowing him to let off a little steam from any thoughts he's been storing up. This gives him designated times and contexts in which to get adult attention, and also allows staff to divert some off-task conversation to the scheduled time slots. (E.g., "Hold that thought. Remember, we'll finish centers in 10 minutes, and then you'll go to your chat time with Ms. Smith.")

    On another note, it may be as well to temper your own expectations for reading. Early reading can be associated with high cognition (and with the milestones of older siblings), but it doesn't have to be (and one certainly should attempt to minimize comparisons; he's very much his own person, on his own schedule). I notice that there are connections being proposed between learning to read and learning self-control. You may wish to consider what realistic expectations for self-control in a small child are, and supporting his efforts in that direction separately from the accomplishment of any particular academic task. He does need to learn self-management skills, and that he is not at the mercy of his moment-to-moment impulses and emotions, but he doesn't need to learn it while also learning to read. Not reading at five is actually entirely normal. For that matter, not wanting to practice letter formation in fall of kindergarten is also quite within normal limits.

    I think your current focus on ABA and shaping his behavior and social-emotional self-regulation is an excellent place to start. Academics and academic learning needs will become clearer as the behavioral piece becomes more stable. If he is getting individual or small group social pragmatics services from the speech-language provider, ABA (is this through the district, or your insurance?), and pull-out academic support, I would give it a little time to see how it works before trying to pile too many pull-outs into his week. Is he currently in an integrated kindergarten classroom/co-teaching model (which is typical for kindergarten special education service models)? If so, he should be getting support for his self-regulation and classroom-appropriate behaviors on an ongoing basis throughout the day. If not, that might be a conversation to have with the IEP team.

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    #246427 - 12/06/19 11:41 PM Re: 2e? IEP help for 5 year old please [Re: aeh]
    yp44 Offline
    Junior Member

    Registered: 11/19/19
    Posts: 4
    Thank you so very much for your reply! You probably just gave me the most insightful guidance and suggestions that I've ever received about my son. I can't begin to describe my feelings. I wasn't able to find any other kid like him in the local ASD group or gifted group. I have people telling me that I should stop labeling my smart kid with a disability, and also people who are completely dismayed by his behaviors, and think that he "chooses" to misbehave. Thank you for reminding me again that every 2e is different. At least now I know my struggles are being understood here.

    The disparities within cluster areas are interesting. I did notice the 25th percentile vs. 95th within working memory, but as you pointed out, the other intra cluster differences are notable too. His inconsistency and unpredictability is something we've been struggling with. He sometimes appears to have "lost" a skill that he had mastered a few months back, e.g. the same puzzle that he had solved with ease before, or a word that he used to know how to spell. Again, I understand he's still very young, and that's probably normal. Similarly, there isn't one single strategy that works well with him, or a single area of topic/activity that will always interest him. It requires a lot of creativity to engage him.

    Thank you for theorizing why he'd avoid writing. Do you think we should ask for accommodation to reduce the demands of writing? I understand this would help his behavior and that it's not his fault to feel frustrated, but somehow this request feels "wrong" to me. As you know, letter formation/writing is a large part of the kindergarten curriculum. As kids get older, the requirement for writing (or typing) will only become more demanding, and he may never catch up. In contrast, I don't mind not attending to all of his academic/cognitive needs right now, because I know he can quickly catch up on those later.

    The scheduled adult check-in suggestion is a very interesting idea! I will definitely mention that and see if it works.

    He is in an "inclusion" classroom with another special needs kid and 20+ others, half day kindergarten. He will be getting small group pragmatics speech services 30 min a week and one-on-one resource room pull-out twice a week, 30 min each to complete tasks that he refuses to do in class. I absolutely agree that he needs ongoing support throughout the day, on the spot social guidance in the natural setting. We will ask for that.

    He will get a positive behavior intervention plan, details remain to be hashed out. Currently, he is being "left alone" as long as he's not causing safety concerns or property damage. He is effectively "allowed" to run around, or scream, or sit idle without doing any work, and he quickly figured out that he has to escalate his behaviors to get the attention he wants from adults. Staff are overwhelmed by him and are not able to respond proactively. I'd imagine his destructive behaviors are also causing emotional responses, and people forget that this is his way of telling us that he actually needs help. Instead, some think that he needs to be given a more serious consequence for misbehavior. We really need the behavior intervention to be positive and preventative.

    I know successful intervention really depends on the details of the behavior intervention plan, on the person who will implement the plan, on specific strategies used. It will require a lot of mental power, creativity, and proper training. I am anxious to say the least :S

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    #246428 - 12/07/19 04:27 AM Re: 2e? IEP help for 5 year old please [Re: yp44]
    Platypus101 Offline
    Member

    Registered: 10/01/14
    Posts: 664
    Loc: Canada
    aeh's words of wisdom have been invaluable in our own double 2E journey, so I'll just highlight a couple of key thoughts from a parental perspective.

    1) Five really is young for reading and writing. Lots of kids, gifted and neurotypical, aren't there yet.

    2 BUT - pay attention to the things that set off your kid's behaviour. I wish I'd understood way sooner that DD's nightly freak-out about her school reader was much more important than the fact that she seemed to be able to (eventually, when she calmed down) read the book. Anxiety, anger, avoidance, behaviour - all are ways your kid is telling you that there is something painful about the task you've given them, and they are panicking.

    3) 2E kids are really, REALLY good at looking like they can do things they really can't, or can only do with great pain, using all their resources, or when the planets align. The question is less, "Can they?" and more "At what cost?"

    4) My dyslexic DD when tested at 8 had great phonemic awareness (88th percentile), but scores plunged when she was asked to engage in increasingly complex manipulation of those phonemes - which aeh identified as a common pattern in 2E. She was probably the best "pre-reader" in her K classes, but she stopped there, while her peers moved on in grade 1. (Ditto for writing.) Detailed phonemic assessment (like a CTOPP) can help untangle this. 2E kids often don't look much like the typical descriptions of various LDs, but there are some great threads on this forum we can help you find if you are looking for more info.

    5) Writing letters requires a different part of the brain than drawing, and kids can be happy artists while also dysgraphic.

    6) Ross Greene is amazing, and I can't recommend collaborative problem solving and his advice on https://www.livesinthebalance.org/parents-families enough.

    Sending lots of best wishes to you and your son.

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    #246432 - 12/07/19 03:17 PM Re: 2e? IEP help for 5 year old please [Re: Platypus101]
    polarbear Offline
    Member

    Registered: 09/29/11
    Posts: 3363
    aeh and Platypus have both given you excellent advice. Like Platypus, I'm the parent of a 2e child, and second everything Platypus notes below:

    Originally Posted By: Platypus101

    1) Five really is young for reading and writing. Lots of kids, gifted and neurotypical, aren't there yet.

    2 BUT - pay attention to the things that set off your kid's behaviour. I wish I'd understood way sooner that DD's nightly freak-out about her school reader was much more important than the fact that she seemed to be able to (eventually, when she calmed down) read the book. Anxiety, anger, avoidance, behaviour - all are ways your kid is telling you that there is something painful about the task you've given them, and they are panicking.

    3) 2E kids are really, REALLY good at looking like they can do things they really can't, or can only do with great pain, using all their resources, or when the planets align. The question is less, "Can they?" and more "At what cost?"

    4) My dyslexic DD when tested at 8 had great phonemic awareness (88th percentile), but scores plunged when she was asked to engage in increasingly complex manipulation of those phonemes - which aeh identified as a common pattern in 2E. She was probably the best "pre-reader" in her K classes, but she stopped there, while her peers moved on in grade 1. (Ditto for writing.) Detailed phonemic assessment (like a CTOPP) can help untangle this. 2E kids often don't look much like the typical descriptions of various LDs, but there are some great threads on this forum we can help you find if you are looking for more info.

    5) Writing letters requires a different part of the brain than drawing, and kids can be happy artists while also dysgraphic.


    My 2e ds has dyspraxia and dysgraphia. When he was 5/6 and in kindergarten/first grade he was routinely throwing over-the-top fits when presented with any kind of writing task at home. As parents we were beyond confused about why he was getting so upset - we thought he just didn't like the idea of having homework to do, even though it didn't seem like much, and anyone who had a conversation with him could see that cognitively it shouldn't have been anything but easy as can be. By the time he was in 2nd grade his teachers were convinced he had ADHD because he was checking out in class and not completing his work. It wasn't until he had a full neuropsychologist evaluation in 3rd grade that we were aware he had an actual disability and learning challenge.

    As aeh mentioned, each 2e child and each 2e experience is different (fwiw, the same is true for people with dyspraxia - it impacts each person differently and across multiple functions). There are some commonalities of experience that are helpful to be aware of though when you're parenting a child who's potentially dealing with a 2e situation. First, it's extremely difficult to tease out learning challenges in the early elementary years because learning milestones are widely variable among all children, regardless of ability. For my ds, that meant his dysgraphia went unnoticed simply because he hadn't fallen behind any developmental milestones. At the same time, he was struggling tremendously every time he was faced with a writing task - but... leading into the second issue: Children in early elementary aren't masters of communication yet (and especially if they have any kind of challenge impacting communication). Our ds couldn't tell us he was unable to write letters, he just knew that he was being given an extremely frustrating task, he wasn't able to do it, other kids seemed to be able to do it, and he was upset. Since he didn't know how to explain this to us, and didn't know that it was not something "wrong" with him, he became frustrated, angry, and he did what kids do - he threw tantrums.

    Another common thing with 2e kids - simply because they are so intelligent, it's tough to see that they're struggling - both because they can hide their struggles and because adults see the "smart" functioning side of the child and think that the struggling side is either laziness or misbehavior or just typical development.

    I can't speak directly to the WISC version that your ds has taken as I'm both not a professional and also because the WISC that my ds took was an earlier version, but one thing stands out to my untrained eye: the relatively low scores for processing speed compared to other scores. I'm wondering if your ds has had any assessments for either fine motor or vision, that might rule out whether or not these are impacting the WISC subtest scores. Vision issues might be impacting your ds' reading I have a dd who had visual processing issues when she was little - we didn't realize it and instead thought she had either learning challenges or ADHD. Her WISC had a similar difference in these processing speed subtest scores vs other subtests - all due to vision. Her eyesight in each eye was a-ok, therefore the vision challenges hadn't been picked up in school screenings, yet her eyes weren't tracking together at all, so her vision was severely challenged. Once we realized that and she went through vision therapy, she went from a struggling reader to a kid who loved to read within a few short months.

    You're currently in that place where you don't know yet that if your child has a challenge outside of ASD, but there are behavioral signs that might point in that direction as well as WISC scores that are uneven. My advice at this point in time is to watch carefully, keep in touch with his teachers so that you're aware of what's happening at school, and if you have a concern, don't let anyone brush it off as falling into that "wide range of development" that takes place in early elementary if you feel it's something more. Keep asking questions, keep researching, keep looking for answers.

    Best wishes,

    polarbear

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    #246476 - 12/13/19 07:10 PM Re: 2e? IEP help for 5 year old please [Re: yp44]
    aeh Offline
    Member

    Registered: 04/26/14
    Posts: 3592
    In order to answer the question of reduced writing demands, we would need to know why fine motor speed is so dramatically different from his verbal cognition. An occupational therapy evaluation would have provided some of that data, as it might suggest some hypotheses regarding weaknesses in, say, fine motor control, or visual organization--or even lead to further evaluation by a developmental optometrist (as polarbear was alluding, with the discussion of visual tracking and convergence challenges). I prefer to pair reduced demands with remediation for the related skill deficit, especially this young. It is indeed possible that, at some point, it may become apparent that handwriting will not be the avenue for written expression (that is, that his handwriting will not "catch up"), and the focus should switch to assistive technology (aka typing or speech-to-text). That moment probably has not yet come. But it doesn't mean he needs to have his access to language expression or math instruction limited by his handwriting delays. It is actually quite within the range of the average kindergarten teacher's skill set and practices to scribe stories and captions for students, as even students with average or above handwriting often have a hard time generating meaningful language while handwriting.

    It's not so much a question of reducing handwriting work, as of limiting handwriting exercises to a certain number of minutes of pure handwriting practice (ideally under the guidance of an OT), while accommodating other written tasks with a scribe or oral assessment.

    Your description of "lost" skills suggests to me that there may be some automaticity weaknesses, which is one of the core cognitive skill deficits underlying both dyslexia and dysgraphia (as well as many dyspraxias). He's young yet to truly assess for automaticity and fluency (most children his age don't have fluency for the kinds of things that might turn up on tests), but I would keep an eye on that. It sounds a bit like the theorized lack of automaticity leads to having to essentially learn skills anew, or solve puzzles from scratch each time, rather than being able to holdover some internalized steps from past exposures. It looks like he's "lost" skills because the usual assumption is that if someone demonstrates a skill, they've actually learned it to mastery, and "own" the skill for the future. That might not be the case for him; he may be repeatedly learning the skill as if for the first time, rather than building on the last time. Meaningful language, on the other hand, isn't as much about mastering a skill as it is about understanding--which he does rather well. Building freeform Legos is less about memorizing a complex series of motions than it is about problem solving--which he also does rather well. Learning a spelling word, however, is often more about memorizing a rote sequence of letters--which he's quite a bit weaker at. Similarly the kind of early reading that most kindergarten's teach/expect. If you tried a systematic, rules-based approach like Orton-Gillingham (the gold standard for remediating dyslexia), he might catch on to both reading and spelling more readily.

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    #246499 - 12/24/19 11:07 AM Re: 2e? IEP help for 5 year old please [Re: yp44]
    yp44 Offline
    Junior Member

    Registered: 11/19/19
    Posts: 4
    Thank you everyone for your invaluable advice and your best wishes!

    Ross Greene is amazing! Thank you for mentioning it! I'm reading the book again. It is indeed very easy to forget that DS is going through some unknown/unseen struggles because he appears so capable. I've had some success trying the suggested techniques to figure out why he misbehaves/what he's struggling with. I need to bring his teachers up to speed on Ross Greene. His teachers insist on giving him "consequences" for his misbehavior, despite me telling them it wouldn't work. My son now downplays (do I use "lie" on a 5 year old?) his misbehavior, e.g. instead of stating that he (intentionally) threw something, he would say, he couldn't get a good hold of it and it was an accident.

    The automaticity comment is very interesting. I do notice my husband also has weaker automaticity than I do, despite having generally better memory than me. He can remember details from a book he read many years ago, but can't remember the route we took a few weeks ago to the same place, or how to operate an appliance that we haven't used for a while. He probably also has lower processing speed like DS. Whenever I suggest something new, his first reaction is usually "no" (just like DS too, lol) and after a while my words sink in and he'd probably change his opinion. DH also reads slower than I do, but has a much deeper understanding of the book once he's done. I could perhaps spend the same amount of time reading the same book 3 times, but wouldn't gain any additional insight, lol

    I took your advice and had his vision checked at a university pediatric eye center. Luckily his vision seems fine and his eyes are tracking together.

    DS has gone through an OT evaluation. Three tests were done but no direct OT service was offered.

    (1) Bruininks-Oseretskey (BOT-2) was administered. He was 99th percentile for Fine Manual Control, but only 38th for Manual Coordination, specifically his Upper-Limb Coordination (measures visual tracking with coordinated arm and hand movement) was about a year behind.
    (2) He passed the Shore Handwriting Screening. Letter formation was adequate.
    (3) Sensory Processing Measure: he appears to have hearing and touch sensory issues, but doesn't exhibit sensory seeking and avoidance behaviors.

    I came across a proposed diagnosis as a subset of autism, and the description very much looks like DS!
    https://www.autism.org.uk/about/what-is/pda.aspx

    I'm prepared to ask for an independent evaluation at some point and I'm hoping to find a psychologist who's familiar with 2e (found a list on SENG), and go from there. It is amazing how many PhDs have already seen him/been working with him. I'm actually very grateful and know that in a way my little guy is very lucky.

    Happy holidays everyone!

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    #246529 - 01/01/20 07:03 PM Re: 2e? IEP help for 5 year old please [Re: yp44]
    aeh Offline
    Member

    Registered: 04/26/14
    Posts: 3592
    Good to hear you have some useful directions and plans in action!

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