Preparing for Psychoeducational Intake Appt

[Shoes+Ships+SealingWax]

We have decided to have DS (nearly 7) undergo psychoeducational evaluation. We have attentional/behavioral concerns that have persisted for a couple of years now despite attempts to improve / accommodate them & are beginning to impact his self-perception & his access to activities. I would also like to see if he might qualify for certain educational opportunities (CTY, DYS) down the road, but that information is a distant secondary “bonus”. 

I have a discharge summary from the OT who confirmed his SPD 2yrs ago & an email from the administrator of a homeschool group class indicating that he continues to struggle with the same types of behaviors.

I have work samples from our lessons, but he’s never done any sort of testing. Should I have him take a standardized academic test in advance, even though achievement testing will likely be included in the evaluation? 

Unfortunately he’s isn’t in any other activities that have been consistent enough to replace the teacher rating scale since we just moved here over the summer. His fall soccer term was coached by a family member, & spring term begins long after the evaluation will be complete. He attends library days weekly, but the duration is short & the environment is incredibly relaxed so he manages pretty well in that environment (though afterward the “dam breaks” & he is exceptionally hyper/impulsive). 

What other documentation should I consider providing?

[PeterPan]

You don't need any. They'll do the achievement testing themselves. Just show up.

Is spectrum on the table here and does your person do the ADOS? Nothing more fun than thinking it should be on the table and getting the blowoff.

Fwiw, if he's 6 and bright (looking at the academics, he is), then some things may just become more obvious with time. Like you're seeing it and you're right, but the labels could evolve over time. I think you're wise to get the IQ done, but even that could change dramatically. Pragmatics testing isn't reliable at this age either. Is your person experienced with gifted? There are psychs on the Hoagies Gifted list, if you want to check there. Run of the mill will *not* be your ideal person for this.

[Shoes+Ships+SealingWax]

5 minutes ago, PeterPan said:

Is spectrum on the table here and does your person do the ADOS? Nothing more fun than thinking it should be on the table and getting the blowoff.

No, we don’t have any concerns about him being on the spectrum. 

7 minutes ago, PeterPan said:

Fwiw, if he's 6 and bright (looking at the academics, he is), then some things may just become more obvious with time. Like you're seeing it and you're right, but the labels could evolve over time. I think you're wise to get the IQ done, but even that could change dramatically. Pragmatics testing isn't reliable at this age either. Is your person experienced with gifted? There are psychs on the Hoagies Gifted list, if you want to check there. Run of the mill will *not* be your ideal person for this.

The practitioner we will be seeing is Hoagies-recommended. We suspect DS is 2E gifted / ADHD however all we have had to go on so far is our own experience & little pieces from here or there that don’t offer us a very complete picture. That’s primarily what I’m hoping to gain from the assessment. 

Basically what we know so far is that he has SPD (sensory-seeking tactile / vestibular), potentially retained reflexes, & some exceptionally low scores on visual tasks (<10%ile accommodation & <1%ile visual tracking) that were impacting his reading development. 

[Lecka]

He is so young, I don’t think other kids that age would have enough testing experience to make a difference. 
 

I hope it goes well and you can get helpful information 🙂

[PeterPan]

6 hours ago, Expat_Mama_Shelli said:

The practitioner we will be seeing is Hoagies-recommended.

perfect

6 hours ago, Expat_Mama_Shelli said:

potentially retained reflexes, & some exceptionally low scores on visual tasks (<10%ile accommodation & <1%ile visual tracking) that were impacting his reading development. 

So are you getting him seen by a developmental optometrist? Don't know when your appt is, but you could get those reflexes largely integrated in a month if you start working on them now. Pyramid of Potential has a download video, $30, and those are the exercises we used through a PT. Worked for us, and yeah the results can be that fast, that dramatic, with major changes in a month. 

Dyslexia is a phonological processing problem, not vision, so there's no *benefit* to waiting on the retained reflexes work. The VMI issues or midline issues or whatever are an OT thing and probably won't respond well till you get the reflexes integrated anyway. And while they can make reading harder, they're not going to cause a dyslexia label. He's also not going to have comprehension issues due to other SLD Reading issues, because his language is fine. (look at his curriculum) 

I assume you've already seen this                                             Bright Not Broken: Gifted Kids, ADHD, and Autism                                       At the very least, saying SPD with no ASD is debatable. Our school district will say it happens, but I just read some new research (came through on my FB feed) that new studies are questioning that. At the very least, it's headed that direction and something to watch out for. The two things you could use as you're keeping an eye on it

https://www.socialthinking.com/Articles?name=social-thinking-social-communication-profile  His profile will be more obvious around age 8, so it's just something to keep an eye on.

https://www.wpspublish.com/caps-clinical-assessment-of-pragmatics  This is a video based pragmatics test, rather new. And here's a review of it being used with 8 year olds https://www.smartspeechtherapy.com/test-review-clinical-assessment-of-pragmatics-cap/  Pragmatics testing really struggles with the younger ages, and the SLDT is definitely NOT reliable at the bottom end of the range. If you wait two years, like maybe till you're back in the States next time, and run pragmatics, it might show something.

There are other things that can be done, but he's just on the young end to bother. I'm saying I would *not* stop with this round. Do it again in a few years and you may get expanded information. You may be seeing weaknesses before then.

My ds actually blended in pretty well with other kids till he was 8. Very experienced people could sift it out, but for us as parents it just felt like his gifted strengths balanced out his weaknesses, making challenges less obvious. Then a SWITCH flipped, his peers leaped ahead, and it became so, so obvious that he had been left completely behind, on his own planet. But his initial diagnosis by a neuropsych when he was newly 6 was ADHD. He's now diagnosed ASD2 and it's agreed on by everyone. 

So then, fwiw, there is a sense in which the labels don't matter. The MRIs are the same whether it's ASD or ADHD. The genes are the same. The INTERVENTIONS are the same. So no matter what they call it, just make sure you're learning best practices for what he's actually dealing with and you'll be fine. Just know that whatever they call it today might not be what it's called when he's 12 or 16.

So I don't know what you're seeing, but at that age things like How Does Your Motor Run? (ALERT), Zones of Regulation, We Thinkers from the Social Thinking people. I wouldn't hesitate to run him through Kelly Mahler's interoception materials. Anything like that where you're helping him get more aware of his body with daily check-ins. 

What are you wanting to make happen? Are you wanting meds? I can see where meds wouldn't be on the table when he has retained reflexes? Is the psych going to test those? I've never heard of a psych testing them, but it could happen, lol. After you get those integrated, yeah that would be the time to be all over meds unless he has some contraindications. Sometimes you get that body calmed down and it lets them *receive* the good instruction they're being given (via Zones, Social Thinking, Interoception, etc.). But if you don't get the body calmed down, it's really hard to be using those cognitive strategies.

Well good luck! How long do you have to wait for the appointment? It's good stuff and sounds like the right thing to do.

[Shoes+Ships+SealingWax]

1 hour ago, PeterPan said:

So are you getting him seen by a developmental optometrist? Don't know when your appt is, but you could get those reflexes largely integrated in a month if you start working on them now.

He was when we were still living overseas, but while he mentioned the reflexes, nothing was actually done for them (super helpful, right?) I have been / will be working on integrating these myself between now & the testing. 

1 hour ago, PeterPan said:

Dyslexia is a phonological processing problem, not vision, so there's no *benefit* to waiting on the retained reflexes work.

As far as we know, there is no dyslexia; his difficulties are entirely muscular. We have continued / expanded the eye exercises independently with good results. His phonemic awareness has always been excellent & he is reading well above grade level despite the focus / tracking issues - he only struggles when faced with blocks of smaller / closer-spaced font. 

1 hour ago, PeterPan said:

So I don't know what you're seeing, but at that age things like How Does Your Motor Run? (ALERT), Zones of Regulation, We Thinkers from the Social Thinking people. I wouldn't hesitate to run him through Kelly Mahler's interoception materials. Anything like that where you're helping him get more aware of his body with daily check-ins. 

We have been working on ALERT since he was 5. It has helped... just not *enough*. Honestly I got the feeling at the time (& still feel) that the OT’s SPD indication was a matter of “I’m not qualified to diagnose ADHD, & really he’s pretty young for that testing right now, sooooo we’re going to call it sensory seeking & work on the same types of interventions.” I have never seen anything from him that would indicate an ASD. 

1 hour ago, PeterPan said:

What are you wanting to make happen?

I’m wanting to get a more holistic idea of what is going on now that we have been attempting self-regulation work for an extended period & have helped his visual system catch up so that it shouldn’t significantly hinder his performance. I want to know how to best help him learn & how to get him to reign in his attention enough to participate in classroom-like extracurricular environments without invading others’ space & bouncing off the walls. 

Edited December 12, 2019 by Expat_Mama_Shelli

[PeterPan]

2 hours ago, Expat_Mama_Shelli said:

his difficulties are entirely muscular. 

Not to nitpick, but it's developmental vision, not a muscle problem. So if you're doing some kind of eye exercises without integrating the reflexes, developmentally you're working out of order, making splinter skills. It can result in regression later (yes, for real) or having isolated skills without full development. 

For some kids, if  you integrate the reflexes, the vision (which is also developed through reflexes) will then come together. Maybe it won't for him, but working on vision before the primitive/neonatal and vestibular reflexes is definitely out of order.

2 hours ago, Expat_Mama_Shelli said:

he only struggles when faced with blocks of smaller / closer-spaced font. 

Yup, that's what happened to my dd. And as the reading level goes up, the font size goes down.

2 hours ago, Expat_Mama_Shelli said:

how to best help him learn & how to get him to reign in his attention enough to participate in classroom-like extracurricular environments without invading others’ space & bouncing off the walls. 

There's a lot to unpack there. Any of those things done 1:1 would be an accomplishment. To add the goal of doing it in a classroom is pretty challenging. 

2 hours ago, Expat_Mama_Shelli said:

We have been working on ALERT since he was 5. It has helped... just not *enough*.

He has so much cognitive, he'd probably do really well with interoception work. https://www.kelly-mahler.com/what-is-interoception/  She has a curriculum and an online class to get you going. She's also doing some 2 day trainings this spring. She just announced another on the FB group. It would be worth your time to connect with one if you're going to be in the country then and can work it out. Otherwise, just plow in.

2 hours ago, Expat_Mama_Shelli said:

how to get him to reign in his attention

Is this like he engages with anything but his body is off doing xyz? Or is it more like he's not really interested in it because he'd rather be doing something else?

2 hours ago, Expat_Mama_Shelli said:

without invading others’ space

Yeah, that's some pretty serious either ADHD or lack of self-awareness or social thinking deficits or something if you've been working on this a year and that's what he's doing. 

2 hours ago, Expat_Mama_Shelli said:

bouncing off the walls

What do you attribute this too? In the moment, does it come across as BOREDOM or body needing to move or a response to the sensory load of the room (noisy) or???

The frustrating thing is that nothing you're doing with the psych makes a major difference in that, because it's not their turf. That's either ADHD (medication, MD) or social thinking (pragmatics, typically with a SLP or BCBA) or the retained reflexes and sensory (both OT). Probably some combination.

So you should be doing the psych, sure, but I'm just noticing that all the psych can give you is really general answers. The actual help will come from other people, referrals. Has anyone done any social thinking materials with him? It would be interesting to see what difference We Thinkers 1 and a social skills group would have for him. It might be a homeschool co-op class is not the right starting point for him to learn these skills. He might need to do it in a smaller group setting with more targeted instruction.

We have a clinic here that works with kids, irrespective of diagnosis (many will be undiagnosed), and that's actually the most common complaint, that kids need help with behaviors in groups. They'll do a 6-8 week session and run through something like We Thinkers 1 or the Zones of Regulation and play games and activities. They support level is super high for that, like 2 therapists and 2 interns to maybe 6-8 kids. So everyone is getting constant supervision. It's where my ds discovered people were not trees, lol. That's how Kbutton put it when she saw him after he had done a round.

So I don't know how long you have in the States, but you might want to expand your team, see what else you can make happen. I can see not wanting the medication option, and there are arguments both ways. But if normal cognitive approaches to ADHD behaviors are not getting it done, you want to know why and how to step it up. Pragmatics testing won't be accurate. An ADOS, sure that would be informative. But for now you may just need to assume and do some things. And if you look at the Social Communication Profiles link I gave you earlier, it really doesn't matter what they call it or if they call it nothing. The interventions will still be the SAME. Medications not the same, but the social thinking interventions, at this point, largely the same. What changes, if  you add in ASD, is looking for narrative language and subtle issues. But yeah, for the social thinking, for group behaviors, for boundaries, for all that, doesn't matter what they call it.

[PeterPan]

2 hours ago, Expat_Mama_Shelli said:

I want to know how to best help him learn

Is he engaged or is he hard to engage?

[Shoes+Ships+SealingWax]

There’s a lot to unpack here, so forgive me if it takes a minute to address everything or if I miss something. 

40 minutes ago, PeterPan said:

... If you're doing some kind of eye exercises without integrating the reflexes, developmentally you're working out of order.

I have been attempting to do the integration exercises with him, but have not had guidance. He has improved greatly in this area & is reading for pleasure, which never really happened before despite adamantly wanting to learn to read. He is now blowing through high-level picture books (the kind normally read *to* children, not by them) & early chapter books almost entirely without losing his place. “Real” chapter books still intimidate him, but I can see him moving in the right direction which is FABULOUS! 

Therapies overseas were exceptionally expensive (& all OOP) so we had to really prioritize what we could / could not get outside help with. We are back in the US now, but our insurance has not kicked in yet & we’ve been living off of savings as the move was very sudden / unplanned. We haven’t been able to get anything started back up, but I’ve been doing the best I can with the tools I have. 

52 minutes ago, PeterPan said:

Is this like he engages with anything but his body is off doing xyz? Or is it more like he's not really interested in it because he'd rather be doing something else?

He engages, but is all over the place physically while engaging. He LOVES learning, has a lot of fun, & is appropriately challenged by engaging work. Teachers or coaches that don’t mind the constant buzzing around adore him because he is insightful & his enthusiasm is contagious.  We have totally flexible / unrestricted seating for lessons & he gets frequent breaks. He’s just... so... busy!

[Shoes+Ships+SealingWax]

1 hour ago, PeterPan said:

He has so much cognitive, he'd probably do really well with interoception work.

I’m not familiar with this; I’ll take a look at it over lunch. 

1 hour ago, PeterPan said:

Is this like he engages with anything but his body is off doing xyz? Or is it more like he's not really interested in it because he'd rather be doing something else?

He is very engaged, his body is just in constant motion. Coaches who can keep him super active or instructors who can overlook him buzzing around adore him because he participates actively, is insightful, & his enthusiasm is contagious. Unfortunately many adults & peers are overwhelmed by his constant movement / noise-making. 

1 hour ago, PeterPan said:

Yeah, that's some pretty serious either ADHD or lack of self-awareness or social thinking deficits or something if you've been working on this a year and that's what he's doing.

He has gotten MUCH better about keeping his body to himself, but again... just not enough. As a toddler & preschooler he would literally full-body hug/tackle his friends to the ground in greeting. He’s almost never intentionally aggressive, just *extremely* gregarious & physically affectionate. Sometimes he realizes it’s too much for someone - awareness that’s taken work, but he’s not oblivious... but he still can’t stop. Some kids can overlook it because they like him so much, but others can’t (& they shouldn’t have to). 

1 hour ago, PeterPan said:

So you should be doing the psych, sure, but I'm just noticing that all the psych can give you is really general answers. The actual help will come from other people, referrals.

I am totally okay with this. I just need a solid starting point that isn’t looking at one issue in isolation. I know it’s only the beginning of the journey. 

[PeterPan]

3 minutes ago, Expat_Mama_Shelli said:

noise-making

Is that repetitive? 

The amount of what you're describing can really walk right up on spectrum. 

33 minutes ago, Expat_Mama_Shelli said:

“Real” chapter books still intimidate him

You might want to get SLP testing while you're here, unless the Hoagies psych happens to run narrative language testing. You want to make sure there's no language explanation for part of this. It could be really subtle. The Test of Narrative Language might show it. Also there's the TILLS. You just need something that does not have multiple choice or models, or he'll be able to fake it out. So not the CELF. The SPELT could be good.

5 minutes ago, Expat_Mama_Shelli said:

just *extremely* gregarious & physically affectionate.

Another spectrum thing. 

6 minutes ago, Expat_Mama_Shelli said:

I just need a solid starting point that isn’t looking at one issue in isolation.

Well then build out your team. Unless the psych is also doing narrative testing, some theory of mind testing, the test of problem solving, etc., you're not going to be complete. Just talk with the psych. Maybe they have someone they like. It's not like this is run of the mill testing. You're talking about teasing out deficits in the really high cognitive, high functioning segment of the population. These kids can mask, imitate, and generally use their cognitive to fake out tests. 

My ds passed the CELF multiple times (it uses models and multiple choice and has known sensitivity issues) and completely bombed even the PRESCHOOL version of the SPELT. He can talk with you a ton and bomb the TNL. He "passed" the SLDT at age 6 and now is labeled ASD2. 

So you're at an age where the deficits are there that are driving the behaviors you're seeing, but getting the testing to show them is tricky.

You might want to open your mind on the spectrum thing. Not to say he is, but just more to say that it will open you up to the broadest range of tools. The behaviors you're describing are all things we *expect* in autism in a gifted kid (and kids without autism as a diagnosis who need social thinking intervention, etc. etc.). So for now, if you make your search for tools *broader* it's going to connect you with more.

In that vein, fwiw, if you really want to go way out of the box, I'd suggest trying to connect with a BCBA while you're here. Not somebody run of the mill, but somebody who has a reputation for being good with gifted, really high functioning kids. If you can find the right person, just bring them in and let them hang with him for a couple hours. Then you can talk it through, kwim? Not for diagnosing, just for having the conversation, for getting a different perspective. A BCBA is trained to observe and record behavior, so they may catch things you're not seeing or notice patterns. In some ways, they're better than a psych. Psychs often are crunching numbers and listening to your stories, where the BCBA is really in the trenches, like what am I seeing, how is he really interacting with people, what was the function of the behavior, how does he respond if I do this or that, how far can I push the interaction, what happens if I do something a different way from what he wants or is expecting, what happens if I change the topic of conversation, etc.

We brought in a behaviorist who was a licensed social worker who works a lot with gifted kids, and she was able to cut through and just be really clear. She spent hours with him and she could actually put into words what was bugging us and worrying us and then tell us why it was happening and what to do about it.

[Shoes+Ships+SealingWax]

43 minutes ago, PeterPan said:

Is that repetitive? 

No - just burning off energy. Singing, humming, thinking out loud. It’s something he only does to help him concentrate when he is working through something more challenging &/or trying not to move around so much. 

43 minutes ago, PeterPan said:

You might want to get SLP testing while you're here, unless the Hoagies psych happens to run narrative language testing. You want to make sure there's no language explanation for part of this. It could be really subtle. The Test of Narrative Language might show it. Also there's the TILLS. You just need something that does not have multiple choice or models, or he'll be able to fake it out. So not the CELF. The SPELT could be good.

I’ll look into this. We are back Stateside permanently. 

43 minutes ago, PeterPan said:

Well then build out your team.

I plan to. I can’t just pull one out of thin air when I don’t know who I need on said team, though - especially when we don’t yet have insurance or funds built up. We have to take this one step at a time. The psych hasn’t even MET him (or us) yet. Once we’ve all met, questions have been asked / answered, the testing has been done, etc. we will see where we stand & be able to move forward. 

Edited December 12, 2019 by Expat_Mama_Shelli

[Shoes+Ships+SealingWax]

After looking into the Narrative Language testing, I don’t think that is a concern for him at all. He’s always been my little story teller! He’s very creative, has a good natural feel for building characters & formulating a plot. He narrates well, can summarize, & comprehends deeply - often making insightful connections. He especially loves word play (rhyming, puns, idioms, simile & metaphor, etc).

Mathematics & language are the areas where he has always stood out most in a *positive* way. 

Off to look into interoception now...

Edited December 12, 2019 by Expat_Mama_Shelli

[Shoes+Ships+SealingWax]

Difficulty with interoception doesn’t really seem to fit him. He potty trained early, experiences hunger / thirst normally, knows when he is hot / cold / uncomfortable & why. He is able to express all of those things clearly &  solve them independently. He notices how exercise or emotions impact his body (heart rate, respiration, perspiration, etc). 

Same for proprioception. He moves around a ton, but he isn’t clumsy & very rarely hurts himself - even when doing risky things that definitely provide the opportunity. He’s a talented athlete who picks up novel, complicated movements quickly. He does seem to struggle with watching someone else do an action (without moving his own body) *then* performing the movements, but if he can mimic instruction with his own body while it’s being given, he’s golden. 

The main thing that stood out for the OT before was his vetibular sense. He used to not get dizzy at all, no matter how long or how fast he spun. He does now, but he still enjoys spinning quickly on playground equipment more than other kids. He also likes being upside-down, but doesn’t stay in that position very long. He doesn’t stay in any position for long 🤣. He is a gross-motor sensory seeker through & through - more, faster, higher, again! He loves a thrill. 

[PeterPan]

23 minutes ago, Expat_Mama_Shelli said:

He does seem to struggle with watching someone else do an action (without moving his own body) *then* performing the movements

That may be the vision thing again. 

Sounds like you've got a lot of strengths to work with. 

You started off your thread asking about the forms, what to gather. So I found that the forms I'd have people fill out were misleading, because as a homeschooled dc he was only being seen in brief amounts (an hour here, an hour there). They might not even *see* the behaviors that occurred on the way there or after. 

So if you have someone seeing him in longer chunks of time, it can be good. Otherwise, I'd just say sorry, just moved here, don't have anyone.

There are peds who will do the Quotient, which is a computerized attention test that using a number of monitors. It has given us some interesting data. 

Are meds on the table at all? If you don't want meds, your answer is stuff like Halloway's Superparenting ADHD book, going really out of the box, being flexible, dealing with whatever you see. Sounds like he should be enrolled in a social skills group. If you're going to be living near a big city, you'll probably have access to something like this. If you're in a rural area, it will be much harder. It might not be a long term thing but just like a few rounds.

[kbutton]

16 hours ago, Expat_Mama_Shelli said:

We have attentional/behavioral concerns that have persisted for a couple of years now despite attempts to improve / accommodate them & are beginning to impact his self-perception & his access to activities. 

I have a discharge summary from the OT who confirmed his SPD 2yrs ago & an email from the administrator of a homeschool group class indicating that he continues to struggle with the same types of behaviors.

I have work samples from our lessons, but he’s never done any sort of testing. Should I have him take a standardized academic test in advance, even though achievement testing will likely be included in the evaluation? 

What other documentation should I consider providing?

Can you elaborate on the bolded? I know you mentioned some of his behaviors, and I can extrapolate from that, but I am curious if he's discouraged, feels different, etc. Also, has he been in any kind of classes with other gifted kids? I know it can be hard to find things, but sometimes local things will tend to attract primarily gifted kids even if it's not for gifted students, or you'll just happen upon a group that offers some comparison. We had access to a local gifted program (wide range of activities for various ages), and it just so happened that my older son's class in school (attended K-2) had a super high percentage of really high ability kids. It provided a ready comparison, which was helpful. The variety of classes also helped--my son would be the kid upside down in his chair (but paying attention) in some classes, and in other classes, parents would point to their kids and say, "You need to do what kbutton's son is doing." It was like whiplash, lol! So, if you can kind of see a range of behaviors in different environments, that can provide some clues to your evaluator whether or not you share them with us.

The melting down at home after stuff is really important. You need to have a way to deal with it, and it's a symptom of its own.

I would not have him do any kind of academic testing ahead--they'll likely do something like the Woodcock Johnson. 

If you kept track of milestones or have your own observations about what he was like compared to other kids at different ages or in different activities, it might help to look at that information. If you don't, it could help to brainstorm because the psych will likely have an intake form with questions, and it can help to have brainstormed.

In some of the ways you are saying things, I hear spectrum traits, but when you clarify, it's less obvious to me. I will note, however, that my 2e ASD kiddo at 7 was a lot like yours, but he was less in motion. He was a combined type for ADHD--inattentive and somewhat hyper, but he didn't need to be in motion all the time. He did make NONSTOP noise. We had some hints of issues with narrative language, but I don't think it would've been that obvious at 7. It was becoming more obvious around 9, but that's in hindsight--at the time, there were just weird holes that didn't match other capabilities. He's still, as a high schooler, rather light on some of the obvious spectrum symptoms, but people who get it see things. People who don't get it just kind of get surprised if something unusual happens that doesn't seem right to them, but usually it's minor enough that if we try to explain the problem, we just sound special snowflake vs. like advocates (we tend to not say much about his diagnosis at his age--people who've known us know; newer people don't).

If your son is kind of borderline for spectrum or has some really strong ADHD traits, the biggest thing will be getting him functional enough to do what comes naturally to him, whether that's learning boundaries and coping with them, upping his social game, upping his self-awareness (he sounds like he an abundance in some areas, and not others) relative to his ability to contain his impulses, and working on life skills that may draw on these things. Those strategies really do sometimes cross labels, and sometimes, problems in those areas increase/come out of the woodwork with changing life circumstances such as dating, marriage, kids, moving, a new job, facing an illness that saps brainspace, etc. I would really accept any help from any relevant direction that helps your kiddo learn to bridge where he is to where he wants to be relative to his interests and goals. I think that's something that people with ADHD need across the board, and it sounds like that piece is likely to be a "for sure" label at the end of this road. A lot of times, people with some serious ADHD develop maladaptive coping skills vs. flexible approaches to things--they get by, but then something changes that leaves them high and dry, and it creates a crisis point (or should, but it lands on a family member instead of them). Just some observations as a "friend of/spouse of/parent of" 2e people. 

[kbutton]

2 minutes ago, kbutton said:

If your son is kind of borderline for spectrum or has some really strong ADHD traits, the biggest thing will be getting him functional enough to do what comes naturally to him, whether that's learning boundaries and coping with them, upping his social game, upping his self-awareness (he sounds like he an abundance in some areas, and not others) relative to his ability to contain his impulses, and working on life skills that may draw on these things. 

Oh, and the flip side of knowing what to do when he needs to function outside his strengths so that he doesn't get fired from a job, etc. ADHD and employment is a big issue. Family dynamics too--our counselor said her case load percentage for problems stemming directly from ADHD is pretty sad. Safety and risk taking is another area.

There is a point where you don't want your kid to feel terrible about themselves, but you also need the kid (at some point by adulthood) to know where they are reliable, not reliable, oblivious, conscientious, etc. because it really matters. Our counselor said that some kids with ADHD really don't "get" why people are mad at them are not motivated to fix it until they've burned a LOT of bridges. They just don't.get.it. without a great deal of pain coming back at them--we've been encouraged to allow a certain amount of realistic irritation show because of that. Sometimes it's task or situation-specific, and they don't care, or they are in a new situation and find themselves suddenly not good at something, but it's too late to fix the perception they just gave off. Just a heads up. It's not fun to watch happen. So, they don't need to be perfect, but they need to know where the potholes are and be as realistic as possible about those potholes. There is no magic age for this.

It's not an across the board thing though--my kiddo with ASD/ADHD is extremely motivated to avoid pain and suffering, to get along with people, to be up front about strengths/weaknesses, etc. My straight ADHD people are another story, lol! 

[Shoes+Ships+SealingWax]

44 minutes ago, PeterPan said:

You started off your thread asking about the forms, what to gather. So I found that the forms I'd have people fill out were misleading, because as a homeschooled dc he was only being seen in brief amounts (an hour here, an hour there). They might not even *see* the behaviors that occurred on the way there or after.

This is a definite concern. The extracurricular environments he is in are so sporadic or relaxed that they really aren’t all that informative. 

49 minutes ago, PeterPan said:

There are peds who will do the Quotient, which is a computerized attention test that using a number of monitors. It has given us some interesting data. 

Interesting; I hadn’t heard of it. He isn’t established with a new pedi yet, but it’s on our to-do list. Pedi appointments aren’t hard to come by, so we will arrange one as soon as our insurance cards come in.  

51 minutes ago, PeterPan said:

Are meds on the table at all? If you don't want meds, your answer is stuff like Halloway's Superparenting ADHD book, going really out of the box, being flexible, dealing with whatever you see.

We are open to whatever helps him be the best possible version of himself. 

[PeterPan]

13 minutes ago, Expat_Mama_Shelli said:

The extracurricular environments he is in are so sporadic or relaxed that they really aren’t all that informative. 

And some forms, like the GARS, assume longer chunks of observation, like 4-6 hours. They'll actually say how many times would you expect to see this in 4 hours, and we had a swim teacher doing them about 30 minute classes. This is why some of us have really bad attitudes about psychs, because they pull stupidity like this.

[EKS]

I always found that writing out my kids' developmental and educational histories as well as my specific concerns prior to the intake appointment was helpful.  I would give what I had written to the evaluator at the end of the appointment to refer back to.  If you do this, just be prepared to have your exact words show up in their report!

[PeterPan]

15 minutes ago, Expat_Mama_Shelli said:

Interesting; I hadn’t heard of it.

Yeah, it's not the only way, but it's a way. Your psych diagnosis isn't really a medical diagnosis or going to get you meds anyway. So you could have that conversation on the insurance dime while you're working out the psych thing, which can often take much longer. 

It would be interesting to see what would happen. To me, you still have some curious flags, like the humming. But, you know, you're starting somewhere which is all you can do. To me the *only* thing you've mentioned that might pull back a bit on that behavior is the retained reflexes, and even then it's probably not going to be like oh who needs meds. It will be more like 12 down to 9, haha. At least that's how it was for my ds. 

The nice thing about a med trial is you can do something short acting and just see. Now we've talked about this in the past, but there is data showing that parents who start with behavioral intervention (for the parents, parent training) actually are more satisfied with their outcomes, even if they end up at the same place in the end (on meds). So it was not a bad suggestion to consider a behaviorist. It's a referral the ped could give you, for some parent training, behavioral supports. 

You probably know this also, but the big buzzword in ADHD is structure. It's kind of counter intuitive, because you want to roll with the bright mind. And it's not so much that it precludes that but structure can decrease anxiety, improve their functionality, and just make everything go better. Is he having symptoms of EF deficits? Chaos? Both my kids have been walking entropy, lol.

[Shoes+Ships+SealingWax]

1 hour ago, kbutton said:

Can you elaborate on the bolded? I know you mentioned some of his behaviors, and I can extrapolate from that, but I am curious if he's discouraged, feels different, etc.

He is becoming increasingly aware that his activity level isn’t really socially acceptable for a kid his age, especially in the eyes of adults. He is very adept at reading adults’ emotions & is a people pleaser, so this bothers him. He’s a happy, resilient kid... but I can see this grinding him down over time if we can’t figure out ways to help. 

1 hour ago, kbutton said:

Also, has he been in any kind of classes with other gifted kids?

He has not, but I would LOVE this for him. We will be moving again next year to a suburb of a large city; access to large, active homeschool social groups & engaging extracurricular activities was a major factor when choosing where we will be looking. 

1 hour ago, kbutton said:

The melting down at home after stuff is really important. You need to have a way to deal with it, and it's a symptom of it’s own

“Melting down” was probably a poor choice of words on my part. There are two different scenarios that happen.

One is that right after trying really really hard to behave a certain way for a duration (“being good” for a 1hr class) all of the held-back energy comes rushing forth & overwhelms his ability to regulate it, leading to misbehavior.

The other is that once he is in a safe space (often at home, alone with me) he allows his emotions to surface & expresses his frustration / sadness. It’s when we have our most productive discussions & do our best work coming up with strategies for the future. This has been a more recent development. In a way I see it as a good thing, because he can’t really work on what he doesn’t see as a problem, kwim? So he acknowledges that there is an issue & he WANTS to improve.

1 hour ago, kbutton said:

If you kept track of milestones or have your own observations about what he was like compared to other kids at different ages or in different activities, it might help to look at that information.

I do have records of these, so that’ll be an easy thing to include. 

[Shoes+Ships+SealingWax]

1 hour ago, kbutton said:

If your son is kind of borderline for spectrum or has some really strong ADHD traits, the biggest thing will be getting him functional enough to do what comes naturally to him, whether that's learning boundaries and coping with them, upping his social game, upping his self-awareness (he sounds like he an abundance in some areas, and not others) relative to his ability to contain his impulses, and working on life skills that may draw on these things. 

Agreed; esp. the bolded. 

1 hour ago, kbutton said:

I would really accept any help from any relevant direction that helps your kiddo learn to bridge where he is to where he wants to be relative to his interests and goals. I think that's something that people with ADHD need across the board, and it sounds like that piece is likely to be a "for sure" label at the end of this road.

I will be truly floored if ADHD is not at least a part of the puzzle for him. 

[Shoes+Ships+SealingWax]

1 hour ago, kbutton said:

There is a point where you don't want your kid to feel terrible about themselves, but you also need the kid (at some point by adulthood) to know where they are reliable, not reliable, oblivious, conscientious, etc. because it really matters...

So, they don't need to be perfect, but they need to know where the potholes are and be as realistic as possible about those potholes.

I think this is going to be the key for him socially. He is charismatic, funny, & athletic. He has every opportunity to do well in this arena, provided he can learn to tone down the overexcitement & respect people’s boundaries. 

[Shoes+Ships+SealingWax]

30 minutes ago, PeterPan said:

You probably know this also, but the big buzzword in ADHD is structure. It's kind of counter intuitive, because you want to roll with the bright mind. And it's not so much that it precludes that but structure can decrease anxiety, improve their functionality, and just make everything go better. Is he having symptoms of EF deficits?

Yes, our homeschool environment has always been FAR more structured than others I’ve known. We have a formal classroom, set “school hours,” flexible seating but with clear expectations re: participation in work, greatly limited distractions. 

He struggles to stay on-task. Drops his pencil on the floor constantly. Misplaces items because he takes them with him while in motion & doesn’t realize he has set them down. Can’t use any type of fidget; it becomes a distraction rather than a help. 

Mentally, though - he’s there. If you were just listening to an audio of our day & couldn’t see him, you’d probably have no idea aside from my frequent cues to ”Get XYZ off the floor so you can [write that down, take your turn, put it where it belongs].” He’s developed excellent mental math skills so that he doesn’t have to stop, find his pencil, & write things down 😅

[kbutton]

Aw, he sounds like a sweet, sweet kid. It's great that he can pinpoint some of this and work on strategies with you. That will take him a LONG way in life regardless of what your testing turns up. 

[Shoes+Ships+SealingWax]

Kind of a splinter question... Something isn’t adding up for me, so if someone who better understands could explain that would be greatly appreciated. 

Last year, at age 6, a developmental optometrist assessed DS. He documented Accommodation Dysfunction, Severe Visual Tracking Dysfunction (1st %ile), & inadequacy in directionality (10th %ile). He definitely had severe tracking difficulty when we took him to see the VTOD. He was dependent upon a bookmark to keep his eyes on the correct line of text after more than a year of reading at a similar level & the tracking exercises helped tremendously. He struggles with attention, focus, & spatial awareness.

A year earlier, At age 5, an OT gave him the Beery VMI & he scored above average for both visual motor integration & visual perception. He has always had excellent (clear, straight, consistent) handwriting. He excels at age-appropriate mazes & hidden pictures. 

Don’t these results contradict one another? If not, what is the difference in what is being assessed? 

Edited December 13, 2019 by Expat_Mama_Shelli

[Lecka]

Well, it does seem contradictory to me too and I would be inclined to be suspicious of the developmental optometrist.  

BUT.

I think there are two possibilities.  

One is, the tests just covered different things.  

Two is, the age difference made him be in a different age group.  There is a big, big difference sometimes between being 5 or 6, with what is expected.  Kids are just starting to learn to read when they are 5, and a lot of tracking goes along with reading, so -- it could be an age thing with the testing, and them not testing certain things for younger kids, and hitting that age level where all of a sudden more is expected.  

Tracking has a lot to do with reading.  It doesn't only have to do with reading, in general, but depending on specifics, it can have a lot to do with reading.  Do you know if he was tracking across words or letters (or something that size) when he was tested by the developmental optometrist?  And then maybe it was more for like -- tracking a ball to be able to catch a ball for the other one?  Those can both be tracking but they're pretty different also.  

Honestly -- I think bring this up when you take your son, and see if you get recommended to follow up with OT or with a developmental optometrist, or not.

You are also mentioning ADHD concerns and it can mean that -- maybe your son was more engaged with one of the tests, maybe it was more active and more interactive, and then maybe he had a harder time focusing on one, maybe there was less rapport or the test was more boring by its nature. That is something too.  Especially when kids are on the young side of a testing age range, I think, and I think that could happen easily with a 6 year old.    

Edited December 13, 2019 by Lecka

[Shoes+Ships+SealingWax]

4 minutes ago, Lecka said:

Do you know if he was tracking across words or letters (or something that size) when he was tested by the developmental optometrist?  And then maybe it was more for like -- tracking a ball to be able to catch a ball for the other one?  Those can both be tracking but they're pretty different also.  

This could be it. His tracking difficulties only surfaced with reading - once text began shrinking & lines moved closer together. His gross-scale tracking (catching a ball, doing soccer / tennis drills) seems fine. 

[Shoes+Ships+SealingWax]

25 minutes ago, Lecka said:

Maybe your son was more engaged with one of the tests, maybe it was more active and more interactive, and then maybe he had a harder time focusing on one, maybe there was less rapport or the test was more boring by its nature.

I’m sure this is at least partially true, as well. The VT was simultaneously very bland & very difficult. I was stunned at how poorly DS did on the directionality assessment, as he hadn’t ever shown significant reversals in his writing & didn’t mis-read similar letters (b,d,p,q). I never would have believed it if I hadn’t watched him do the assessment myself. 

[Lecka]

I have had it explained to me that tracking is harder with reading because the eye is making smaller movements, and it’s easier to make larger movements.  And it’s pretty specific to reading, or pencil/paper, to make the smaller eye movements.  So it take more control.

Just to be devil’s advocate, if he was on the youngest side for the directionality thing, he could do poorly and still be average compared to Kindergarteners but very low compared to K-6th and sometimes a score or performance seems low for that reason with a 5 or 6 year old who is in the “ages 6-12” category — which sometimes is how things are done.

I don’t know that — but sometimes that comes up with being on the young side of an age range.  
 

If you knew what average was for his age and/or his reading development then you could know more.

Because you could probably give a 6-year-old a lot of test and see poor performance, but not know if it’s a concern or just being 6 or being earlier in reading development.  Edit:  I think it can be a judgment call if some things will go away on their own over a year or need treatment.  And whether tracking is a cause, part of a cause, or an effect (aka showing earlier reading development, but what is the reason for that?).  Edit — I think some people are not very sensitive to age differences and it sounds like this test was aimed at an older child to me, really.  
 

I think see what your testing says.  That person sounds reputable and I think can give you guidance with a big picture.  That sounds good to have lined up.  
 

Edit:  there’s also reason to be skeptical when you have not noticed a problem or noticed a difference from kids his age.  
 

Sometimes that turns out to be something a parent didn’t notice or the person is catching it early.

Sometimes it is someone who has children with problems brought in and they don’t see many younger children and it’s not what they are used to, and they lump different ages together too much.  
 

If he was a little older I wouldn’t think that, but at age 5-6 I do. 

Edited December 13, 2019 by Lecka

[Lecka]

And really tests can just be inaccurate if they are too long, not enough breaks, the child is fatigued, etc.  And especially with this age!

[kbutton]

Did they check convergence? What you are pointing out does seem odd to me, and I've had two kids do VT. One still has visual processing issues, but the therapy did help a great deal because of the work on retained reflexes, which we couldn't seem to get anywhere else at the time. My older son had primarily cut and dry convergence issues, and therapy was life-changing. 

If they didn't check convergence, I would be leery, and I would maybe want that tested at a different VT place. 

If he is 2e, is he reading above grade level? Vision keeps maturing, and reading more complicated books usually means less than ideal font and whitespace for younger eyes. 

I wonder if the VT test didn't allow him a chance to use compensatory strategies--since you mentioned him literally moving his body to learn things he sees, this came to mind. My husband has to dial phone numbers in the air to remember them, lol, and it sounds like your son has his own version of that.

[kbutton]

You should mention this to the psych, but carefully. Some psychs think VT is a crock, but others are more open-minded. Many realize that it depends on the practice just like everything else.

[PeterPan]

3 hours ago, Expat_Mama_Shelli said:

A year earlier, At age 5, an OT gave him the Beery VMI & he scored above average for both visual motor integration & visual perception. 

So if you want a laugh, my ds is the opposite, with crazy good scores from the developmental optometrist EXCEPT for the VMI. So tracking/convergence and VMI are not the same. Our VT place would screen VMI and refer off for OT. 

The retained reflexes you've got can result in the developmental vision problems, because the vision reflexes do their gig after the neonatal/primitive/ 

3 hours ago, Expat_Mama_Shelli said:

He excels at age-appropriate mazes & hidden pictures. 

Don’t these results contradict one another?

So VMI shows up on my ds with difficulty writing. He's basically non-functional for handwriting and at age 11 can write single words, maybe a sentence. Definitely nothing functional like a full page. The mazes and hidden pictures are using visual perception, so that makes sense that he's doing well.

It's still astonishing to me that they did VT without working on the retained reflexes. 

[Shoes+Ships+SealingWax]

40 minutes ago, kbutton said:

Did they check convergence?

Yes, the overall conclusion was a combination of convergence & accommodation insufficiency as well as difficulty with the saccadic eye movements necessary for smooth reading of near print. 

49 minutes ago, kbutton said:

If he is 2e, is he reading above grade level? Vision keeps maturing, and reading more complicated books usually means less than ideal font and whitespace for younger eyes. 

He is presumed to be 2E (guess we’ll find out soon!) & yes, he was / is reading above grade level - though not dramatically so. We sought out the VTOD because he had been “stuck” at the same reading level (around J/K) for a full year & was complaining of headaches when trying to read. Since spending a few months on the tracking exercises, he has advanced another grade level & has begun reading for pleasure. 

[Shoes+Ships+SealingWax]

24 minutes ago, PeterPan said:

It's still astonishing to me that they did VT without working on the retained reflexes

It’s likely that the procedures followed, testing chosen, therapies offered, & terminology used are all different due to where we were. Hong Kong is incredibly traditional / clinical. The VTOD we saw was literally the *only one* who worked with kids who had developmental vision issues other than amblyopia. I really didn’t care for him much (he was kind of a jerk about DS being so “busy”) but he was something of a necessary evil given our options for helping DS at the time. 

[PeterPan]

So what you might do, now that you're back, is have his annual eye doc visits with a developmental optometrist just so they can screen and make sure all that stuff is staying on track, still on track.

And hey, the good VMI scores or a GOOD thing!!! He's got a lot of strengths to work with. This is the kind of child who can go to college, hold a job, etc. It's GOOD, even if it is contradictory and bizarre to sort through, lol.

[Shoes+Ships+SealingWax]

1 hour ago, PeterPan said:

So what you might do, now that you're back, is have his annual eye doc visits with a developmental optometrist just so they can screen and make sure all that stuff is staying on track, still on track.

This is a good thought; thanks. I should probably go ahead & try to book one before our insurance cards come in... if I wait it might not happen before the assessment. 

[Lecka]

I am glad you did get those good results!  That is good!

And I think it could be good to have some follow up screening with his vision.  
 

But I feel free to roll my eyes some, or just think — those other things may have fixed themselves now that he is reading better.  So it’s good things have come together and you did get good results!  But he could just do better on the same testing now.  
 

I am just guessing and think it’s worth a follow up screening at some point and everything — I just would not be surprised.  
 

Some of these tests really can change drastically with kids developing their skills over a fairly short period of time.  It is good when that happens 🙂

[Lecka]

You can look for fatigue, unexpected difficulty with different fonts or sizes or page styles that are about for his age, looking from the side, etc.  

But it sounds like things are going well now.  
 

Was that test score stuff from before his reading showed improvement?  If it is the scores really have probably changed.  

[kbutton]

2 hours ago, Expat_Mama_Shelli said:

Yes, the overall conclusion was a combination of convergence & accommodation insufficiency as well as difficulty with the saccadic eye movements necessary for smooth reading of near print. 

What you're talking about with therapy doesn't sound like it covered convergence. None of the visual stuff is going to be easy until convergence is nailed down, and that is the primary thing that VT has going for it with evidence and studies. My son did brock string exercises as well as a lot of bilateral coordination work. There was also some other stuff that I can't think of right now, but lots of trying to fuse/separate images to create a 3D image or see something as one object instead of two.

Accomodative insufficiency usually involves flippers and then some near/far work. Both of my kids did this, but it doesn't help my younger son. My younger son is unable to do this work--his accommodation is what it is (and it's not at the level of needing bifocals). The muscle that focuses the eyes is connected to the zonules that hold the eye lens. His zonules are made of defective fibers due to a connective tissue disorder. At some point, it's possible that his lens can displace (so far, so good), but specialists in his disorder have mentioned accommodation as being problemetic to some degree in most patients with his disorder.

Hopefully VT for your son included something comparable because without fixing convergence and accommodation, the rest is harder. 

[Shoes+Ships+SealingWax]

1 hour ago, Lecka said:

Was that test score stuff from before his reading showed improvement?  If it is the scores really have probably changed.  

Yes, those scores were from his initial assessment in March. Unfortunately our relocation was unanticipated & extremely short-notice (a matter of weeks) so we weren’t able to repeat the tests before leaving. The headaches, resistance to reading, & tracking issues have all either disappeared or improved dramatically. 

51 minutes ago, kbutton said:

Hopefully VT for your son included something comparable because without fixing convergence and accommodation, the rest is harder. 

Yes, his tasks included work with flippers (which he HATED) + red/green bars, as well as some near / far activities that I don’t know the appropriate terminology for. 

[Shoes+Ships+SealingWax]

Assuming it turns out to be a representational assessment, this evaluation will be able to differentiate between hyperactivity as a symptom of an attentional issue vs a sensory issue, right?

The primary reason we are pursuing this is to make that distinction. We want solid data rather than purely trusting our guts, particularly as an attentional deficit diagnosis will prevent DS from being able to follow in dad’s footsteps career-wise (possibly moot, but we’d really like to avoid misdiagnosis). 

[Lecka]

I would be a little leery of finding out hard-and-fast at age 6-7.  It is just a young age.

When my older son (not the one who has autism) was 9-10 i was told his things that seemed like they might be ADHD were nebulous-sounding sensory issues.  I never felt like I had a solid answer for that.  I think that his Connors observation form did not show ADHD at all.  
 

He had the Connors observation form probably 3 times over elementary school and it never showed ADHD.  
 

I know not what you want to hear!  But nebulous sensory issues that often seem like ADHD — I don’t think it is super easy, because — I did not feel like I got really good suggestions.  Kind-of.  
 

My use of the word nebulous is how I can feel about vague sensory issues, though.  
 

But he does not seem like he has ADHD now (he is 14) and hasn’t in a few years, so — it just got better I guess.  
 

He got very high for anxiety on one of the ratings forms when it seemed like ADHD, also.  
 

So — I think it is hard to say until you go.  And maybe you get a definite solid answer, but maybe not.

Helpful information and strategies are good.  And maybe some solid information!  But it can be helpful even if it’s not the most definite stuff ever.  
 

Do you know if there is a “function” to his movement?  Is it self-regulating?  Is it helping him focus?  Keeping him from being bored?  If it is more sensory then that is an avenue — you can notice more if he is trying to engage or keep from being overstimulated, or if there are maybe replacement behaviors, or maybe things to do before he needs to focus (or as breaks)?  This is all the kind of thing OT can be good with or — since one of my son’s has autism, Ime a lot of people working with kids with autism are very on top of this kind of thing.  
 

 

[Lecka]

Do you have someone to fill out observation forms?  Some observation forms want a parent and a teacher.  

[Lecka]

I guess what I would say is — through 6th grade, my son did not do as well in a lot of ways compared to other kids who had ADHD and were doing well with supports, counseling (sometimes),  and medication.  

He was similar to some kids who had ADHD and needed a next higher level of supports.  
 

There are a lot of kids with ADHD doing really well with treatment and supports.

It is all really individual.

Its not necessarily going to be a severe untreatable situation At All if it is ADHD, and it’s not necessarily going to be easier if it is sensory/executive functioning/whatever.  
 

 

[Lecka]

I’m skeptical too that there are too many careers that could be ruled out from age 6.  It is just not too likely.  I doubt you get that level of answer right now.  
 

Even if you got an ADHD diagnosis — who knows how he will be doing when he is older, you know?  

[Shoes+Ships+SealingWax]

16 minutes ago, Lecka said:

Do you know if there is a “function” to his movement?  Is it self-regulating?  Is it helping him focus?

A bit of both. There are certainly sensory things that help him calm down when overstimulated  (firm hugs) but the energy level is pretty constant & often the only solution is finding a way for high levels of activity to happen in a way that is suitable to the environment. He definitely requires increased movement to focus on challenging tasks. Having adequate intellectual stimulation is the thing that helps the most. 

10 minutes ago, Lecka said:

I’m skeptical too that there are too many careers that could be ruled out from age 6.  

Unfortunately, his father’s is one of the few. An ADHD diagnosis makes obtaining a first-class medical exceptionally unlikely & use of any of the medications will bar him entirely. If he has ADHD, that’s fine - being able to help him is far more important. If he doesn’t, though & is misdiagnosed I suspect that could be really difficult to have officially removed from his records. 

[Lecka]

I am in the United States — it will probably be different on some things.  
 

Maybe you can ask at your appointment about that, maybe there is a way to put off adding it to paperwork, or something.