What does this show/2E? What next? How to best support?

[Tanager]

removed personal info for family protection

Edited June 12 by Tanager

[Rosie_0801]

Google 'CSMP Materials' and work at home. It should suit her visual spacial skills. My kid had a similar profile and wouldn't have learned maths without CSMP. Start with the K level and have her translate between their methods and standard notation when she's ready for it. That'll help her connect what she's learning to what they do at school. Coz yeah, that sounds like dyscalculia to me. I used parts of MEP for maths facts drill and problem solving, since my kid is weak in problem solving. 

Working on vocab via Apples and Pears spelling might help too. Certainly don't do a full lesson each day, and if the kid can spell verbally or using ASL fingerspelling, that'll save the effort of writing.

ElizabethB's reading lessons off thephonicspage.org would teach mum how to drill the kiddo in phonics. She's just as dyslexic as she was last year and the year before and next year and the year after, no matter what the tests say. 

Rigidity and emotional dysregulation seem inevitable. The kid is living a high stress life.

[PeterPan]

I'm being straight/blunt, so if you're not in the mood for blunt don't read. 

The negative reaction to adhd stimulant meds indicates a potential COMT (methylation) defect. You can read up on this and run genetics inexpensively (23andme) to get the data to sort it out. 

The rigidity plus "ocd" plus everything else you mentioned indicates probably autism. You should assume this because girls are severely under-diagnosed. Assume it and stop fudging around. 

Given the father is a donkey, you should assume the father is where the dc got the genes for all this.

The dyslexia diagnosis is probably incomplete. If you get thorough testing for APD, she probably will have some holes there, which is why the spelling is not kicking in even though the interventionists are saying they've remediated the dyslexia. Dyslexia intervention tends to focus on sound to orthography, while the APD diagnosis is about the actual processing of the sounds and bits of language. An audiologist typically does the testing for that but the intervention can be done by that same audiologist sometimes or an SLP who specializes in it. It can be challenging to find an SLP who specializes in APD. There are sometimes cross-trained SLP/audiologists and you can sometimes find SLPs who specialize in reading/literacy who have gotten trained. We used an SLP with experience in the deaf community. With proper intervention, the spelling will kick in quite nicely.

You mentioned no language delays, but this is likely not accurate. With a 2E presentation kids can script, mask, and general cover it up. My ds was listening to Great Courses/Teaching Company lectures at age 5 and 6 but failed, FAILED, a preschool expressive language test at 10. He had "passed" SLP evals for language before because his MLU seemed fine. He was able to "pass" the CELF with ease because the stinkin' stupid test was MULTIPLE CHOICE and PROVIDED MODELS. Think hard. If you give a gifted kid multiple choice and a model, can they get the answer? Of course. Does that mean they can DO it in original speech without a model? Life is not multiple choice. When we got a more involved test (the SPELT) that gave no models and no multiple choice, his deficits because obvious. They also look at narrative language, pragmatics, etc. There is no doubt a dc with this level of rigidity and challenge has nuanced pockets of language issues that are not being identified and will become obvious over time.

Don't listen to teachers. They are not qualified to diagnose anything. Get data, use testing. 

The dysregulation will improve with OT. She doubtless has retained reflexes to integrate (which is the cascade that starts all the other quirks) and she will benefit from work on Interoception which is self awareness. See Kelly Mahler's work on interoception. Parent can do the online training and do the work with the dc herself or hire it with an SLP or anyone willing to provide the intervention. Interoception work takes about 8 weeks to go through the basic part of the curriculum. She may need to integrate reflexes first, which will take a month. So if you START NOW, by the end of the summer she can be in a radically better place. 

In a list of what to start with (because I threw a lot at you), I would find an OT trained in retained reflexes. I would also find an OT trained in Interoception even if those two are not the same person. Do both. THEN do the APD eval and intervention, which can be done nicely a couple days a week via tele during the school year. Prioritize the OT because it will get her more comfortable in school and in the fall update with an IEP or 504 to get her accommodations that reflect the parents' new understanding of what the dc needs.

If the parents wish to pursue the autism question (which they should at some point), I would suggest looking for a psych who specializes in autism, especially GIRL autism and gifted autism. Sometimes what happens is the parents don't mark behaviors on the stupid, idiotic questionares they use, so the fast food psychs (the ones who just use paper questionaires) have no data to justify a diagnosis. This is why autism is a whole separate, additional eval sometimes beyond the initial eval for IQ, SLDs, etc. When you get a specialist, they will do the ADOS and they will have enough experience to know what they're seeing. If you want to clear the air, that's how you get there. 

Is there a rush to do the ADOS and update evals? I'm not saying that. The average age of diagnosis for higher IQ kids is much higher, like 8-10, I forget. This is because what seems a little quirky becomes very obvious as their peers pull ahead. But the mom should *assume* it is and not beat around the bush. She should push for EVERY INTERVENTION that she would make happen if she already had the autism diagnosis. She should push for every ACCOMMODATION she would make happen if she had the diagnosis. 

Sometimes what happens with some other labels is people get into this "try harder" rut, which turns very negative. You end up with kids who will say things about hating their labels, hating themselves. When we acknowledge it's autism, it's fixed, there are gaps, we can just be a bit more gentle. We have tools, we gain skills, but we also know who we are and accept it and accept where we're at. Value this mental health and stability and it will protect her.

 

Edited June 8 by PeterPan

[PeterPan]

Btw, that crazy low vocabulary score tells you there are language issues. 

No, the answer is not reading more. Vocabulary is more complicated than that. When an SLP says vocabulary is low, it's more than just how many words they know. 

Is the mom overwhelmed with the dad situation so she's in denial? She doesn't have funds to access care? I'm not meaning to be mean, just asking obvious questions. 

I had to do vocabulary intervention for my ds years ago and right now it's rusty. The jist is the behaviorists and the SLPs pretty much talk past each other. They both say the same thing, that words have facets and that we have to process those facets to make connections and understand.

So an SLP might use a program like the Expanding Expressions Tool. If you look at what it covers, it's going to  hit the same facets of vocabulary has a behaviorist (BCBA, someone working with autism) using the VBMAPP. And Lindamood Bell has a program that also hits these. Does it matter what you call it and who does it? No. But it matters that it happens because those facets DIRECTLY LEAD to grammar/linguistic development. How do you understand verbs if you don't think in terms of FUNCTION? How do you understand adjectives if you can't think in terms of FEATURES? How do you understand nouns if you don't think in terms of CLASS? 

When an SLP or psych says there is low vocabulary, the question is not just how many words they know but how they process those words, lexicon, how it is organized in their brain. They have more detailed tests that can show this and it's why the intervention is done by an SLP. If you read to the dc, you expand their quantity of memorized words but you don't necessarily affect how they PROCESS the words, how the words are organized in the brain. Without that organization, comprehension is affected. In a worst case scenario, it turns into what they call "word callers" or hyperlexia. 

So, if you want a laugh, my ds at one point was a dyslexia hyperlexic. It happens. 

I have no clue how far this dc's challenges go. I'm just saying what to look for. Do not take claims of things not happening at face value because diagnoses often change over time as things become apparent. If she's not too old for Play Project, it's good. RDI=relationship development intervention is good. I'd probably update the psych evals before doing RDI, just me. In the long run it won't matter. She could do everything she can make happen and by the time the dc is a teenager whatever is going on will be obvious and diagnosable, despite all that intervention, lol. I used to have people brag to me what a GREAT JOB they had done because they had done so much whatever that some doctor told them their dc was no longer diagnosable. Whatever. It's obvious and as their peers pull ahead it will become obvious again. We just give tools and skill sets and enough self awareness and CONFIDENCE that they can apply them. 

[PeterPan]

Cartwright has an excellent book with that title Word Callers. Linguisystems used to sell a hyperlexia kit that hit a ton of great areas.

You should never assume stuff is not going on unless you've had thorough testing to demonstrate otherwise. We had an SLP doing language testing on ds in the early years who didn't want to do that super detailed test for facets of vocabulary because she said it wouldn't show anything. Granted, ds' quantity of words was crazy high, so it was a logical assumption!! So then I was working with ds doing this GEMS unit on Frog and Toad where he needed to categorize buttons by different attributes. Child COULD NOT do this!!! I thought it was a fluke or behavior because it was so shocking.

Gifted/2E kids end up with holes like this. Something can be so strong you have NO CLUE without detailed testing that the issues are going on. I call my ds 3E fwiw. 

The outcome is going to be great. She just needs to build a team and jump in with both feet and not listen to lightweight thinkers who blow her off and say stuff isn't going on. The only reason they can say that is because they DIDN'T RUN THE TESTS that would show the issues. Now if they run the more detailed tests for narrative language, for expressive language, and they're not tests that use models and multiple choice (yes, be that demanding) then fine. But often SLPs don't even OWN these tests. You have to go to a specialist in a major city typically to find someone who has that many tests. You have to find the tests you want run and ask upfront if they own them. For real.

To find the names of the tests, you go to a site like ProEdInc.

[PeterPan]

I stopped being a nice person years ago. Got burnt way too much. Don't trust anyone. Verify everything.

I used to show up and beg experts to help me. I would trust people and make it personal (you're nice, I like you, you're smart). Then I realized I was going to have to find the tests, find what intervention needed to happen, find the person trained in that or who owned it, and move on from anyone willing to take my money who didn't own those materials or wasn't trained in that.

It's that process where you realize experts and people who bill $100+ an hour will take your money and may or may not be able to help. Another person down the road might charge the same amount but have what you need. The only way to find that person is to realize what you need, sigh, which doesn't seem like how it ought to be.

The reason this is happening (rabbit trail) is because ASHA has resisted specializations for SLPs. They're being asked to do too many things, which means that in more complicated situations they do not have the specialized training it would take. There is discussion of this changing and we really need it to make it easier for consumers to know when they have an SLP who is likely to be prepared to do what they need. 

Edited June 8 by PeterPan

[PeterPan]

Btw, if you want to see what vocabulary intervention typically looks like, you can go to ProEdInc and SuperDuperInc. Both sell materials commonly used by SLPs. You'll see a range, from game based kits to workbooks to really specialized sets with cards. I like them all, but I'm going to suggest to you to be skeptical or ply your brain on why someone might choose to use one or another. My ds benefited from explicit instruction that punched through his holes and ability to mask.

For instance ProEdInc sells the Spotlight on Vocabulary series, which I used with ds. Not saying it's glamorous or fun, but it was effective. I led into it with a game and I'm trying to see if they still sell it. I'm not finding it, but you can dig around. Maybe I got it from SuperDuper? So a game then explicit instruction. Then I found *more advanced* workbooks to extend the concepts. I took my ds through all the SPARC for Autism books and liked them because they took the concept and got you using it in sentences building up to narratives.

Remember, if we do something once, in isolation, memorized, it's a parlor trick. The goal is for it to show up in original speech, in narratives. So we have to think on this continuum, where they're using the skill we're targeting. 

Yes, Super Duper has more of the fun stuff. They also sell 100% Vocabulary, which I used with my ds as that follow up after the games, the SPARC books, and the Spotlight series. 

Maybe your person won't need all that, but that's how you figure out what it's going to take. There's this range of materials. If the thing you're considering (attributes=adjectives=features) is showing up in original sentences and in narratives, then you're golden. Repeat that for everything (articles, adverbs, different types of conjunctions, whatever is age appropriate). That's the hack way to know where the dc is really at. If you get a narrative language program, they go at it from the opposite end, working on narrative and slowly building up making sure all those grammatical components are there. So you never win by saying it's not happening, lol. Eventually someone has to get those language pieces into their narratives for reading comprehension, writing, etc. to happen.

[kbutton]

igaps.org is a place to start looking for professionals that diagnose and remediate APD.

I agree with the others that this is complicated. It’s odd to say the dyslexia is gone, and it’s super odd to look at that vocabulary and not be finding an SLP and/or APD professional!!!

I agree with playing to the visual strengths. It will make things smoother and also make her feel more competent.

[Ottakee]

Another great learning to read resource that works well for people with dyslexia and mine on the spectrum was www.iseesam.com.   Older program but effective.  They even have apps now.

apples and pears spelling was the best we used.  Just do 1/2 lesson a day or less as needed. Just start from the beginning and build skills.

And I do agree that this is likely a spectrum issue as well.

[Rosie_0801]

I used the 'I See Sam' readers along with ElizabethB's lessons with dd. They're dull but effective.

[Tanager]

The only way I can describe the Donkey (great name) situation is it’s completely insane - I’ve never heard of the things happening she went/goes through, it’s constant worry/stress… literally PTSD causing. 

 

There are methylation issues in our family, didn’t realize that could be a factor.

Mom has been trying to look further, she’s brought up concerns before and I’m guilty of assuring her there’s nothing I can see, though dc was 2 or 3 when I saw her last in person. Our kids share some traits like being super, super shy when young… other things are donkey related.
 

Mom is taking dc to therapy, trying things, asking for testing… Mom works and has other responsibilities too, other younger kids with their own things, but can afford to get help, what she lacks is time/support. It’s really hard to be specific without being obvious. I offered to write here as I want to help somehow being far away and I didn’t have good answers/couldn’t understand her test results.
 

Thank you guys, for so much direction, support, ideas and validating her concerns. There’s a lot to digest here, it is hard to hear, but we are very appreciative.