UPDATE page 2 - Feedback on my plan for DS 6 for the rest of the year

[Cake and Pi]

I'd love some feedback on what I've got planned to temporarily homeschool my youngest, who is 6.5yo and repeating kindergarten this year. He was mainstreamed in public school with an IEP and pull outs, but things are shut down now due to COVID-19. Unless we fall in love with the arrangement, he's likely to return to public school in the fall.

Background:
Although he has low-average cognitive functioning, he struggles mightily to learn. He has a neurodevelopmental disorder related to his prenatal/birth history (previously dx GDD) with a language disorder that significantly impacts his ability to understand spoken language. He hit the floor of the test for auditory memory. Visual memory is low-average. Processing speed is in the borderline range. He has a relative strength in visual-spatial, which is exactly average. Developmental peds says an ADHD dx is on the horizon and likely SLDs in reading, writing, and math.

My Plan:
Math: RS level A (1st edition, easier than 2nd edition), but I think I'll need to adapt it to be less auditory
Handwriting: HWOT kindergarten with all the manipulatives
Phonics: ?????

All of this I have on hand already from when my older boys were little.

For kinder language arts own:
TYCTR in 100EZ Lessons
Sing Spell Read and Write
a couple of the early Explode the Code workbooks
BookShark K
tons of readers of every level (including BOB Books)
sandpaper letters, magnetic letters, some other manipulatives

I know Barton is typically recommended on this board, but I worry a bit about alternating between what the school uses (Wilson) and Barton, especially since he's unlikely to continue homeschooling this fall. That said, I do plan to give him the Barton readiness test this week.

Thoughts on this plan? What should consider changing or adding? Other ideas? I'm willing to buy other curricula, but I need to keep the total under about $200.

Edited May 31, 2020 by Cake and Pi

[PeterPan]

Ok, so first what I love is that you have had full psych evals. That's a lot of great info to guide you. 

14 hours ago, Cake and Pi said:

Unless we fall in love with the arrangement,

Do you *want* to fall in love with it? Are you homeschooling your others? I mean, I see your huge sig, multiple kids. Are they normally homeschooled or are they home because of the school closures? If they're home all the time, how does that affect your time to work with him? How much time do you have to give to this and what kind of work arrangement do you need with him?

I'm asking, because I think understanding your situation and how you need to work with him and what time you have for 1:1 will help us guide you. Also, what is his ability to work independently and what kind of structures does he need to succeed? Was he succeeding in that K5 mainstream classroom? What supports were they using? And what of the materials you're considering do you already own?

No, I would not use RightStart with him and I would not use Barton. So there, that saves you $400 and you can move on. Sorry. What was the ps using for handwriting? Was he getting OT? If he was getting OT for handwriting, I would continue whatever method the OT was using. If not, yes anything basic like that will be fine. Reality is, the ability to write (fine motor) is proceeded by gross motor and other early writing skills like doodling and mazes. So just my two cents, but you might find it useful to see where he's at with his ability to cut, trace, do dot2dots, doodle or follow steps of a simple drawing, do grid drawing, coloring, coding (make up little codes that he solves by writing the letters to spell his reading/phonics words or preferred vocabulary like something he's into like Thomas the Train or whatever). I would do daily gross motor like having him draw on the whiteboard, paint while standing at an easel, taking him to the park, etc. And if ALL those skills are there, all the foundational stuff, then proceed with your HWT, kwim? But if they're not, if any of those more foundational steps are hard, then you won't go wrong working on them. Happily, they're inexpensive things that are easy to pull off and might be things he can do somewhat independently, allowing you to work with your others. You can set him up an independent work station like this 

https://autismclassroomresources.com/setting-work-system-stations-workbasket-wednesday/

https://autismclassroomresources.com/benefits-structured-work/

These are structures I was using with my ds at that age. Clear structures will allow him to do tasks independently so he can be productive while you work with the others. He may already be used to the concept of stations, so it may be an easy reach. And don't make it hard, kwim? Metal divider stands, cardboard magazine holders, whatever you've got. If you really wanna go all out, colored squares for him to match and velcro them to the bins and then the task sheet or a strip on his desk.

Also consider the value of "preschool" activities that build language and other good skills. If he can do them independently, all the better. Dot 2 dots, color matching, category matching, initial sound matching, dominoes, etc. Go through LakeShore Learning and you'll hit JACKPOT. Any kind of preschool play, like hanging up laundry and pretending to wash dishes, felt puppets, etc.

https://www.amazon.com/Melissa-Doug-Educational-Double-Sided-Spelling/dp/B0007Y4DLG  This is awesome.

                                            Learning Resources Vowel Owls Sorting Set, Word Recognition, Assorted Colors, Set of 6, Ages 5+                                       This will be together, not independently, but it's fun.

Can he do an alphabet puzzle? And can he do a simple puzzle of 13, 25, or 30 pieces? Visual spatial is a strength, yes? Ok, here's an irony. Visual spatial and visual *motor* are not the same. So my ds has stunning visual spatial skills and through the floor visual motor. That's why we ended up doing so much OT for handwriting. You can't assume the visual motor is there just because the visual spatial is. In fact, given his current challenges, I would assume the opposite. But yeah, inventory, see what he can do. If it's a common preschool skill (playdough, coloring, cutting, mazes, matching games, etc.) and those skills are not intact, then they should go on your list. 

14 hours ago, Cake and Pi said:

He hit the floor of the test for auditory memory. Visual memory is low-average.

Ok, so two thoughts there. One, the ADHD meds could help. Two, check out how he is with rhythm. Can he clap to a steady beat? Or is he like all over the place or going into hyper clap? We've had some kids here go from basement low working memory to slightly more functional with metronome work. It targets that EF portion of the brain, and after they get the ability to keep beat with the metronome, you can begin to bring in digit spans, distractions, directionality, rapid naming, whatever you want. So it's fine to work on them directly sure, using games but also consider adding in 5-10 minutes once or twice a day to target the brain.

Games for different kinds of working memory, yes so visual, kinesthetic, auditory. I tried to hit all three each day when I was working on them. So 5 minutes 3X a day. Visual was a game like Memory (I know, so original, haha), auditory was digit spans, and kinesthetic was a series of commands in motion like touch your head, jump twice, turn around.

The ability to repeat a sentence is DIRECTLY TIED TO LANGUAGE DEVELOPMENT. So be very cautious there not to frustrate him. It's not just working memory there but whether he even understands it. Repeating something you understand is easier than repeating a similar length of jibberish or a language you don't know, kwim? Try it for yourself, lol. Does he go to something like Awana? How does that go?

Another thing I'd be asking, given everything you've described, is retained reflexes. There are some neonatal/primitive reflexes that glitch language and motor development if they don't integrate. So that's another thing you could hit over the next 1-3 months that might give a noticeable bump in behavior and language. It's really counterintuitive, because you think you need to work on other stuff. But going back and checking the foundational issues sometimes gets you farther. And it's stuff you can do easily at home, stuff the school won't likely do, and stuff you can make noticeable progress on in the 1-3 months you're wanting to work here.

So yeah, if you were asking me, I'd be doing

-metronome work

-gross motor and fine motor

-reflex work

-independent/structured work systems

-speech therapy materials to target language issues

-Ronit Bird for math--This is the BOMB.

There are also some math instruction systems meant for ID. I'm not really up on those. Ronit Bird is inexpensive and readily available. I suggest you start with her Dots ebook, which is under $10. RightStart is what I used with my dd (no SLD math) but my ds (SLD math/reading/writing and ASD2 and apraxia) couldn't even get out of the gate with it. You're much more likely to succeed with Ronit Bird and it's less expensive, can be started today, and will use items you already have. Bonus, it's very conducive to short lessons or multiple short sessions, making it very ADHD friendly. So with my ds (who was a pistol to work with at that age), we would do an exploration session (5-10 minutes) and then a game (another 5-10) and then some other kind of application to generalize and get it into real life (play animals, dot to dots, cooking, another game using the math, measuring things with a measuring tape, playing with clock manipulatives, you've doubtless got stuff lying around). So it's easy to get in the amount you need to progress without having long sessions or taxing poor fine motor skills.

LakeShore Learning has a set of math stamps. Actually they have numbers and they have rods/blocks. Our IEP team suggested we focus on writing numbers, since that's more within reach for ds than functional (full page) handwriting. So if you're picking any goal, again, for 1-3 months you could pick a more focused goal like that.

Ok, I'm terribly sad. I was trying to find a link for Go Nuts (Gamewright) because that was one of our FAVORITE games for this age. So easy to play, fast and fun. But it appears to be oop, sorry. But really, play games. Dyscalculia is considered a disorder of number sense, so it may turn up in his sense of quantity, his ability to recognize groupings/quantity without counting, his ability to estimate, etc. So games where you have a field and are counting them up but being challenged not to count by 1s can work. Yahtzee is good. We have multiple kid yahtzees (Disney, etc.) I got at the thrift store. Trouble is another to hit some of those basic math skills.

I'm reading your list of what you have. The magnetic letters and sandpaper letters sound great!!! https://bartonreading.com/students/#ss  Here's the barton screening tool. I would suggest you do this today, see where he's at, and then report back. And if you can answer the other things about where he's functioning, maybe we can make suggestions on how to proceed. You are correct that a dc with a DLD and borderline or ID might not be well suited to Barton. I used it with my ds, but honestly he ended up hyperlexic, reading but having no clue what he was reading. He needed extensive language work. Sigh. I have a whole thread on what I did.

What you end up with is strands you're running parallel. You don't get the luxury of assuming he'll make connections or have all the skills. If he had straight dyslexia, for instance, with no DLD, you'd typically get the decoding going and the comprehension would likely follow. But you are going to get to work ALL the strands. You're going to build the phonological processing skills AND the language AND then morph that into decoding and comprehension. And you'll keep going with the language because that leads to the morphology (word bits) for spelling and more advanced comprehension. So you'll end up with kids who can spell in theory (with their reading program) but have it filed somewhere else in their brains, not connected to meaning and usage. For most kids, connecting the meaning (language) and the written and the sound all just come together. We're going to get to work it all.

On the plus side, it's fun. My ds, aside from the behaviors, is actually way more fun to teach than my dd. More challenging intellectually to understand the issues and more rewarding to see him get things. So I think you guys can have a great time together, sure! But how you're going to have enough time, that I don't know. If you have dedicated 30 minutes with him twice a day and he can work structured work systems he'll probably be fine.

Is your ps providing tele services? Our state is making way for all IEP services to continue via tele. It's a BIG DEAL and there are legal fights going on, stuff in Congress, about how to handle IEP/federal rights during this time. So just me, but I'd be fighting for what you can make continue to happen. WRITE YOUR SENATOR at the state level. Seriously. If they're saying can't, write your senator. And just being honest, if you can make something happen privately via tele, funding it with insurance, now might be the time. SLPs have dramatic openings and are rapidly converting to tele, so you'll be able to get in with someone. The only question is funding. You have enough issues going on that it would NOT be overkill to get two hours a week of speech therapy. I kid you not. That's 30 minutes a day, 4X a week. For DLD and phonological processing issues? Not overkill. And our IEP, with language issues like yours AND the apraxia, is like 15 minutes a week. So we take our state funding and do it privately at 2 hours a week. And I work with him. 

If you're not overwhelmed, you can look at my language intervention thread or I can throw you ideas. Short version is Linguisystems, ProEdInc, Super Duper Inc. I would start with games for categories, etc. and pair them with the SPARC series. I used more, but my ds was ready to read. Super Duper has a Grammar Processing Program we used at the age of your ds. I think if you do games for language and GPP and SPARC and work on reflexes, that will keep you busy 3 months easily. You can add in something for phonological processing based on the results of the Barton screening. Then, when his reflexes are integrated and you've had the resulting language bump (yes, it can happen!), THEN work on reading. 

When in doubt, play games. You can do this.

Edited March 23, 2020 by PeterPan

[PeterPan]

                                            Pickles to Penguins!                                      This is great for working on categories, attributes, etc. If he can do it easily, then you're golden. But if it's hard, then that's a clue to back up and go through those language development skills. My ds would make these crazy connections but couldn't just say they both have wheels, they're both blue, they're both foods, they're both used for... etc. 

If you're christian you might find these a good fit.                                             Family Life Resurrection Eggs - 12-Piece Easter Egg Set with Booklet and Religious Figurines Inside - Tells The Full Story of Easter                                       Simple objects for each lesson, short narratives, allows you to work on narrative language. 

If you tell him a Bible story or other short story, can he retell it?

https://www.amazon.com/s?k=kumon+mazes&ref=nb_sb_noss_2  We did lots of Kumon mazes. Kumon also makes these cute cut and fold books that are super fun. 

You can get dot2dots at dollar tree, but also Kumon probably has them. I would start low (20, then 50) and see how he does. You could print a sample just to test. You can even get double mileage by having the longer ones (100 dots) be together work and easier be independent work. There are also alphabet and skip counting dot 2 dots. 

We did graphing art at that age. Teachercreated.com has a cute book of holiday graphing art. Graphing data can be hard for kids with SLD math, so it's both math and fine motor, boom.

 https://www.youtube.com/user/StorylineOnline/videos Picture books are so, so good for language comprehension and he may stay at this stage a long time. You can never do too much with picture books. I can go look at the BookShark K, but you might do better focusing on picture books. Does he understand your read alouds? Unfortunately, the spread between his language skills and his peers may increase. Maybe not. The most obvious indicator will be his behavior when you try to read him books at a given lexile or when watching tv. What movies or tv will he sit for? Not just the content, but the speed, the language complexity. My ds would walk away from shows because he couldn't follow the story line. He's only just starting to follow well enough to engage well with an adult or more complex movie and we're doing mostly physical comedy and musicals. We'll actually pause and talk about the narrative components (what their problem is, how they feel about it, what their plan is, etc.).

Edited March 23, 2020 by PeterPan

[PeterPan]

15 hours ago, Cake and Pi said:

what the school uses (Wilson)

Wow, your school uses Wilson?   You are SO lucky, wow. Our school doesn't even have anyone trained in OG of any kind. Nothing. So this is just super stellar. 

I'd still pretest with the Barton screening tool, just to MAKE SURE those skills are there. Then, you know what you might do is see where he is. Barton would send you her placement tests for the first few levels of the Barton program so you can see. I think see what your data shows and then decide, kwim? How can his auditory working memory be so poor but he's progressing in Wilson? That's a little odd. It can happen that the instruction wasn't clicking, the interventionist wasn't given enough time, or that he hasn't been at it long enough. 

So I think see where he's at and get back with us. Barton is *not* going to address his comprehension needs, but that's because he's a more complex situation. There's a really cool book I used with my ds that has so many great activities for hyperlexia.                                             Word Callers: Small-Group and One-to-One Interventions for Children Who "Read" but Don't Comprehend (Research-Informed Classroom)                                       I'm not saying your ds is but just that attending to comprehension will be terribly important. 

I really like the physical kits I'm getting from Lakeshore Learning where you build words to go with pictures. Pictures=MEANING. So it's tricky because we had to do a significant amount of drill to build fluency, but we also had to build meaning. Cartwright talks about it the idea of (my slang term) multi-processing. So the word has to be both processed as letters AND as meaning. Lots of great activities there. Something maybe to get from the library when your library system reopens. Not right now maybe, but when you can get it for free.

Linguisystems has a hyperlexia kit that includes a lot of basic language topics. It will give you a *checklist* of the things you want to be considering for his DLD, even if you don't want to buy the whole kit. I didn't buy the kit but someone else here had an SLP who used it. But the list is very applicable and stuff to consider.

If you pick SOMETHING and work on it and do it well, he'll be making progressing. You don't have to pick the most $$ thing or replicate the school, kwim?

Hey, let's page @Mainer She's fluent on Wilson, right? So where can op jump in and what can she do easily? And what are the odds that they were doing Fundations instead of the full Wilson? How can she assess where to start? 

I don't think it's so much that Barton would be bad. I think more just it would be an $$ choice given your $200 total budget. Have you tried writing the intervention specialist and asking her for at home materials to use? That might be your first stop. This is ABSOLUTELY OUTRAGEOUS if he was enrolled and they are offering services to other children but not their IEP kids. If they offer academics to the others, they HAVE to service your dc. Unless the federal gov't waives that, it's all controlled by law, even under pandemics. So he should continue to receive services and get materials sent home to help him access his education. I'd definitely be pushing for at home materials from that reading specialist.

The Shape Coding app is free right now. You don't need it *right now* but you might want it eventually. Trying to think if there are any other good early reading apps free right now. OmazingKids on FB is the bomb for that. There's a LOT free right now.

Spelfabet is very low cost, fits your budget, solid instruction, AND it has visual. https://www.spelfabet.com.au  

The MA Rooney foundation has free OG materials. http://www.marooneyfoundation.org/professional-learning.aspx

I will still do the Barton pretest to make sure his foundation is solid to go forward. But if it is, either of those might work.

Total aside. Did you have his hearing tested? When his blows over, you might want to get that done. He'll be 7 at that point, so they can run an APD screening as well. We can get this done for free/low cost at our state university. You want someone who specializes in APD so they can at least screen.

Edited March 23, 2020 by PeterPan

[PeterPan]

Mainer shared how she works with her kids 

  

[Terabith]

Even if your school uses Wilson (and do they use Fundations or the Wilson Reading Series?  I don't think WRS is usually used before second grade.), the first level of Barton, assuming he passes the pre-test, is absolutely stellar.  But I'm betting he won't pass the pre-test.  I think working on the pre-Barton stuff would be incredibly useful and make Wilson way more effective when he does get into it.  

[PeterPan]

https://www.weareteachers.com/reading-apps-for-kids/  

And Spelfabet just posted a link to more readers on their FB page. You can never work too much on fluency. https://www.readingelephant.com/shop/  

44 minutes ago, Terabith said:

the first level of Barton, assuming he passes the pre-test, is absolutely stellar. 

That is such a good point. And really, the comprehension issues for Barton with this student will be long term, showing up more in like Barton 3. I'm trying to remember, was it Barton 2 where we were reading phrases and building sentences? That's where the comprehension issues were showing up on my ds. But that's a good point that if it takes her 3-4 months to get through level 1 with him, it might be great timing. 

[Cake and Pi]

1 hour ago, Terabith said:

Even if your school uses Wilson (and do they use Fundations or the Wilson Reading Series?  I don't think WRS is usually used before second grade.), the first level of Barton, assuming he passes the pre-test, is absolutely stellar.  But I'm betting he won't pass the pre-test.  I think working on the pre-Barton stuff would be incredibly useful and make Wilson way more effective when he does get into it.  

 

Sorry, yes, they are using Wilson Fundations at his level. 

[Terabith]

Wilson is great, but I think all students should go through Barton 1 before any other OG program.  It really works on phonemic awareness, discrimination, and auditory memory without the distraction of letters. 

[PeterPan]

35 minutes ago, Cake and Pi said:

 

Sorry, yes, they are using Wilson Fundations at his level. 

Well let us know how he does on the pretest. It's covering skills like that are necessary/foundational for any program. Also, I'm not sure Fundations is considered tier 3. Considering what is on the table, I'd want a tier 3 approach, just me. 

https://www.wilsonlanguage.com/programs/fundations/implementation/tier-2/  Yes, so it's tier 1 in group, tier 2 if you stretch it.

https://www.wilsonlanguage.com/programs/fundations/implementation/student-assessment/  Was he doing the K5 level of Fundations?? That's kind of concerning. 

So yeah, do the Barton pretest, see where he's at. If you're taking more of a tier 3 approach (which there's no reason NOT to), you're going to have options.

Edited March 23, 2020 by PeterPan

[PeterPan]

31 minutes ago, Terabith said:

Wilson is great, but I think all students should go through Barton 1 before any other OG program.  It really works on phonemic awareness, discrimination, and auditory memory without the distraction of letters. 

And the problem is that some kids need to back up even farther and does some LIPS/FIS work. She really needs that pretest data. It doesn't look like Fundations is really trying to hit those skills, because those are sorta tier3 intervention at that point. But I haven't used Fundations, so I don't know. All that matters is where he is and going forward.

[PeterPan]

As part of his speech therapy, does he have goals for articulation, or all they all for language? Just checking. That can also make a difference in what program you use.

[Terabith]

Yeah, I am pretty sure he needs LIPS or Foundations in Sound.  

[PeterPan]

6 minutes ago, Terabith said:

Yeah, I am pretty sure he needs LIPS or Foundations in Sound.  

Well I guess she can do the pretest, get her data, see. Intervention is more than the program, so who knows what they were doing and what got done and what stuck vs. what could use more work.

[Cake and Pi]

5 hours ago, PeterPan said:

I would suggest you do this today, see where he's at, and then report back.

I will check if he can keep a rythm, do the Barton screening, and check for retained reflexes (if I can figure out how...) and try to report back tomorrow.

Puzzles: He can do 12-piece independently, 24-piece with a little help.

Retelling a short story: NO, he is not able to do this yet, but if you tell him a story with pictures he can sequence the pictures correctly. He hates being read aloud to unless there are lots of pictures and few words per page.

Movies/TV: He's still mostly in toddler shows, I think. He'll sit for Blippi, short Elmo clips, Blue's Clues, and Daniel Tiger's Neighborhood. He only started liking these in the last 6-9 months or so. Before that he showed no interest in videos.

Hearing: Yes, tested multiple times with audiology, plus an auditory brainstem response test because his behavioral tests were so inconsistent. They thought for a while that he had fluctuating hearing loss, but couldn't come up with a physical cause for it and ultimately decided that it's probably an auditory processing or attention problem, not a physical hearing problem. He *does* have mild hearing loss, but it's mild enough that it shouldn't affect normal speech development.

Other: We're still working on potty learning... and by working on, I don't mean he sometimes still has accidents. I mean he's in the phase where he sometimes goes to the potty instead of in his pull-up.

5 hours ago, PeterPan said:

How can his auditory working memory be so poor but he's progressing in Wilson? That's a little odd. 

We don't know. He's highly unusual is all they can tell me. He has some extremely weird memory issues, and basically every professional who has evaluated or worked with him ever has commented on it. He is actually better able to remember a string of gibberish or unrelated words than he can remember ideas in context.

He has had echolalia since about 2yo, but it isn't something he can control and it's not functional. He can repeat 8-12 "bits" but it's so random and nonfunctional and not something he can do on command. He also has weird lags in responses. So you might ask him to do something and he doesn't respond, but then two days later he does it.

Here's an excellent example: When he was a toddler, maybe 16, 17-ish months old, DS 8 (then 3) took a toy out of his hands. He immediately screamed and bit DS-then-3. His EI SLP was in the middle of a session with him and modeled placing her open palm on her chest saying, "Mine," very emphatically. At that time he wasn't yet able to imitate words or gestures and just gave her a blank stare. Three MONTHS later, when he still wasn't talking or communicating at all, the same scenario happened again with DS-then-3 taking the same toy from him in roughly the same location in our house. He put his hand on his chest just like the SLP did and perfectly replicated her intonation while saying, "Mine." It blew me away. But he's done tons of things like that since then. When he was 3yo and only using occasional single words to communicate he ran into the kitchen yelling "Mama! It's 10:43! It's time to GO!" which is something one of his brothers had said to me a few weeks before when we were running late for a playdate. This was actually him trying to ask for an afternoon snack. I caught his urgency and understood what he wanted because he ran into the kitchen, but his speech was completely nonfunctional.

I forgot to mention that he also has diagnosed recall issues in addition to memory issues. So, sometimes even when he knows and remembers something he can't recall it or demonstrate that he understands. We mitigate this by giving him choices. (e.g. Me: What color is this? -- Him: Blank stare. -- Me: *after waiting 8 seconds in case he's processing* Is it blue or red? -- Him: Blue! -- Me: Right!)

He's been evaluated by developmental peds, the concussion and rehab clinic, neuropsychology, neurology, audiology, opthamology, had brain MRIs, an ABR, countless x-rays, a swallow study, and so many other tests and procedures; he's followed by genetics, endocrinology, neurogastro, urology, the colorectal clinic (his potty learning issues seem to originate in his brain stem); he's done years and years of OT, PT, speech, feeding therapy. No one can explain anything. They finally just about 6 months ago they settled on neurodevelopmental disorder associated with his prenatal/birth history. They say it all comes back to that. We know he had compromised blood flow in his brain before birth, a couple of teeny, probably benign genetic mutations, and an itty bitty cyst in his brain (that should only have the potential to affect growth, vision, or possibly cause head aches). He doesn't fit in any boxes. 

5 hours ago, PeterPan said:

You are correct that a dc with a DLD and borderline or ID might not be well suited to Barton. I used it with my ds, but honestly he ended up hyperlexic, reading but having no clue what he was reading. He needed extensive language work. Sigh. I have a whole thread on what I did.

He has a low-average IQ. He just has problems understanding, learning, processing, remembering, and retrieving, lol.

Future hyperlexia is a real possibility. Thank you for bringing this up. He already says more than he can understand and uses cocktail speech (not sure that's an official term, it's what the SLP calls it when he throws together words and phrases but not in a way that is functional). That said, he does have age-appropriate understanding of single spoken words. It's when words are strung together that his comprehension breaks down. I'll look up your thread on language work!

3 hours ago, PeterPan said:

Do you *want* to fall in love with it? Are you homeschooling your others? I mean, I see your huge sig, multiple kids. Are they normally homeschooled or are they home because of the school closures? If they're home all the time, how does that affect your time to work with him? How much time do you have to give to this and what kind of work arrangement do you need with him?

I'd love to homeschool him. However, I *am* homeschooling the three others, and I fear we are already at max capacity. DS 12 is ASD1+ADHD+mood disorder+dysgraphia+gifted, DS 10 is ADHD+ODD+anxiety+dyslexia+dysgraphia+gifted, and DS 8 is ASD1+ADHD+anxiety+gifted. Just for the older three each week we normally have CBT, DBT, ABA, social skills group and/or behavior group, OT in cycles, speech in cycles, and many of these are for multiple kids. As my siggy says, it's all sorts of complicated.

So, I don't really have much in the way of free time. I can probably devote about 60 minutes a day of focused time to DS 6 right now because we're in a shelter-in-place situation with no outside therapies, though we should be getting at least some of those set up via telehealth in the coming weeks. Honestly, it's been pretty crazy in the house with no therapies or ABA support for the last week. I am stressed to the gills trying to keep the household running and everyone quiet enough that DH doesn't loose his job (his company's policy is that he can work from home only if he has a quiet, distraction-free area... which was pretty hard to pull off this week with all these kids in 1,700 sqft and crappy weather).

Also, DS 6 spends a lot of time each day crying/moaning/humming (really, he's almost never silent) and he is pretty near incapable of entertaining himself. I'm trying to set up a rotation of the older kids "mentoring" him for chunks of the day (reading to/playing with him nearby) while the other two do lessons/ mom-facilitated therapies. That works with DS 10 and DS 12, but DS 8 is more significantly impacted by his ASD and probably will end up needing me to directly coach most of his "mentoring" of DS 6... which I'll probably do to encourage that growth, but isn't going to free up any time in my day, lol.

3 hours ago, PeterPan said:

No, I would not use RightStart with him and I would not use Barton. So there, that saves you $400 and you can move on. Sorry. 

I already own RightStart and am super familiar with it after already going through the whole program with the three older kids. That's sort of why I planned on it. Do you think it can be adapted to suit our needs? I'm totally fine going off script. It's also first edition, which was was much more gentle than 2nd ed for level A. It only covers number sense, place value, and addition. There's no subtraction or intro to multiplication/division as in the 2nd edition. 

What is different about Ronit Bird? How does it work? 

3 hours ago, PeterPan said:

What was the ps using for handwriting? Was he getting OT?

PS uses Wilson Fundations for handwriting. In the summers we do private OT and learning and language group therapies and they use HWOT in OT and something I've never seen or heard of before in the learning and language groups. I already own HWOT (bought a set of 4 when I first ordered for my DS#1 six-ish years ago, completely expecting to HS them all at that point). 

He lost his school-based OT this fall at his IEP triennial because his fine motor skills are in the normal range now. The learning specialist works with him on writing letters as part of reading intervention in that he must write letters from sound dictation, but his letter formation is not being addressed at all. Pretty much every letter possible starts at the bottom or middle, he's got reversals out the wazoo, and he somehow manages to even write letters sideways sometimes.

I believe that with some focused instruction he's entirely capable of writing well formed letters. He makes wonderfully detailed drawings and loves to color. We tried mazes and he didn't seem to get the point of them.

3 hours ago, PeterPan said:

Is your ps providing tele services?

Not so far, but we were notified last week that they will be! 

[PeterPan]

1 hour ago, Cake and Pi said:

He has had echolalia since about 2yo, but it isn't something he can control and it's not functional.

https://www.northernspeech.com/speech-language-acquisition/natural-language-acquisition-in-autism-echolalia-to-self-generated-language-level-1/  Don't know if I already linked these for you, but you might want to consider buying both courses. The 40% off is a DEAL. 

1 hour ago, Cake and Pi said:

Puzzles: He can do 12-piece independently, 24-piece with a little help.

Retelling a short story: NO, he is not able to do this yet, but if you tell him a story with pictures he can sequence the pictures correctly. He hates being read aloud to unless there are lots of pictures and few words per page.

Movies/TV: He's still mostly in toddler shows, I think. He'll sit for Blippi, short Elmo clips, Blue's Clues, and Daniel Tiger's Neighborhood. He only started liking these in the last 6-9 months or so. Before that he showed no interest in videos.

Hearing: Yes, tested multiple times with audiology, plus an auditory brainstem response test because his behavioral tests were so inconsistent. They thought for a while that he had fluctuating hearing loss, but couldn't come up with a physical cause for it and ultimately decided that it's probably an auditory processing or attention problem, not a physical hearing problem. He *does* have mild hearing loss, but it's mild enough that it shouldn't affect normal speech development.

Other: We're still working on potty learning... and by working on, I don't mean he sometimes still has accidents. I mean he's in the phase where he sometimes goes to the potty instead of in his pull-up.

What you're describing is a lot of how my ds was at that age. And I'll give you the chaste advice NOT TO PUT YOUR MONEY INTO CURRICULUM. Curriculum is going to let you down. Put your money into YOU or put your money into therapy level, intervention tier 3 level materials. 

1 hour ago, Cake and Pi said:

He also has weird lags in responses. So you might ask him to do something and he doesn't respond, but then two days later he does it.

You're describing autism. Have you read Show's book?                                             Teaching Your Child with Love and Skill: A Guide for Parents and Other Educators of Children With Autism, Including Moderate to Severe Autism                                       

I'm sorry if that's not what was on the table. Is there a reason they're not getting him diagnosed? Multiple other of your kids are already diagnosed and he's seeing a lot of people. In any case, Show is an MD and explains the neurological basis for the slow/delayed reactions you're describing. Also some of the big name psychs like Ruth Aspy may have some research on it. 

So yeah, getting a diagnosis that opens doors to more intervention, maybe some at home hours when this is done, could be good. He has enough challenges that he would EAT UP high quality interaction. I can get it if you're like oh no not ABA, kwim? But intentional high quality interaction, someone who is more umbrella, more naturalistic, more aware of how to work with complex kids from a gifted family.

I was thinking this before and I'm still thinking it. I highly doubt that IQ score is accurate. He just has too many challenges. I mean, just that funky delayed echolalia. I've READ about that but not had it in my house. There's just no way a verbally driven IQ score is telling you the complete story. So I want to keep reading what you're explaining, but personally I'd teach to his contradictions. He probably is as bright as he seems and as challenged as he seems at the same time. But 3 SLDs and wetting at age 7 do NOT define high/low IQ. And my ds' IQ swung wildly, almost 50 points, between administrations. Work with him in a way that fits everything you see, not only one angle or interpretation.

1 hour ago, Cake and Pi said:

He's highly unusual is all they can tell me. He has some extremely weird memory issues, and basically every professional who has evaluated or worked with him ever has commented on it. He is actually better able to remember a string of gibberish or unrelated words than he can remember ideas in context.

So doesn't that sound like a highly bright child in a highly challenged body/neurology? Sure sounds like it to me.

1 hour ago, Cake and Pi said:

his speech was completely nonfunctional.

Actually that was textbook echolalia, and echolalia IS FUNCTIONAL. It's just a top down, whole language, extreme memorization of language, rather than the normal bits to whole, bottom up way little children learn language. So the materials I linked you to on northernspeech services and linguisystems for hyperlexia are very fitting.

Again, he's getting SLP services, but that's like what, an hour a week? If you push to get this called ASD (and I'm sorry to be saying it if it wasn't on your mind), you could get more hours, more service. More would be more better here. Language drives EVERYTHING. ABA and getting someone who is naturalistic and knows the VBMAPP or something could give you a solid road map to intervene on language. If you allow a whole to parts approach to go forward, he'll hit a point where he can't keep going. Even the brightest kids can only memorize so long till their maxed out, kwim? And the problem is, like you're finding, the meaning is getting attached incorrectly. So he memorized an ENTIRE SENTENCE and in his brain filed it to that room, that scenario. So it was non functional in the sense that he didn't understand it at the bits level to use the sentence components in another setting. 

Sigh. Deep breath. Why aren't they calling this autism and giving you more services??? So by assigning him a low IQ on paper, they've dropped expectations and don't give a rip. Just saying. That's your real fight here, the low expectations.

1 hour ago, Cake and Pi said:

He's been evaluated by

Ok, so I'm reading all this. It's also very obviously autism. So what if they called it the brain damage AND autism? You may need to go to a bigger hospital. I knew someone who was having trouble in her legal fights and she drove to the biggest name hospital she could find many hours away. Your number one problem right now is funding and access to services, so to fight to get access to services would be worth it. Like get a lawyer, make a fight, get the ASD diagnosed, get the highest tier of funding in your state through the ps or through your insurance, kwim? If GDD isn't opening doors, go autism. Because them saying ID and low expectations isn't getting you anywhere. 

But I'm not a lawyer. Just saying.

1 hour ago, Cake and Pi said:

probably benign genetic mutations

Have you looked at the SPARK study? It would take a while to get results, but if you have at least 3 people (which you will, with the siblings and parents), then you'll get a reply from them on mutations. So you'd throw this sibling in and see if he has them too.

1 hour ago, Cake and Pi said:

He has a low-average IQ. He just has problems understanding, learning, processing, remembering, and retrieving, lol.

Does he *function* like a person with a low-average IQ? I mean, I'm not wanting to get your hopes up. I'm just saying IQ is a construct. Did they do a TONI or a nonverbal IQ test of some kind? He has a severe, severe language delay that is going to mess with all testing. I would work with him the way he really functions and ignore the numbers. Is he CURIOUS? Does he surprise you on things?

1 hour ago, Cake and Pi said:

what the SLP calls it when he throws together words and phrases but not in a way that is functional). That said, he does have age-appropriate understanding of single spoken words. It's when words are strung together that his comprehension breaks down.

I'm not sure your SLP is meeting your needs here. This is a level of language problem that needs HOURS EVERY DAY, not one hour a week. That's why a BCBA who is supervising and setting goals using the Verbal Behavior Approach and those roadmaps is what you need.                                            Verbal Behavior Analysis: Inducing and Expanding New Verbal Capabilities in Children with Language Delays                                       Here, this book is NOT light reading, but it will make clear what I'm talking about. There is this astonishing turf war our system has allowed between the BCBAs and the SLPs. Actually, if you want to blow things out of the water, find an SLP who is a BCBA. They're very hard to find, very rare. but they do exist.

Do you have any clinics near you that specialize in autism? That might be another way to find an SLP who could work with him and get you a better plan.

1 hour ago, Cake and Pi said:

Just for the older three each week we normally have CBT, DBT, ABA, social skills group and/or behavior group, OT in cycles, speech in cycles, and many of these are for multiple kids.

Whew!! And you've worked so hard for them. Wow. 

1 hour ago, Cake and Pi said:

I am stressed to the gills trying to keep the household running and everyone quiet enough that DH doesn't loose his job (his company's policy is that he can work from home only if he has a quiet, distraction-free area... which was pretty hard to pull off this week with all these kids in 1,700 sqft and crappy weather).

Oh my. Ok, well I agree with you that mental health comes first and that this is a VERY STRESSFUL time. I didn't realize you were so stressed, so please just file things away in the someday pile, not the guilt pile. You can only do what you can do right now.

1 hour ago, Cake and Pi said:

Also, DS 6 spends a lot of time each day crying/moaning/humming (really, he's almost never silent) and he is pretty near incapable of entertaining himself.

Again, with a family history of ASD and EVERY SINGLE SYMPTOM IN THE BOOK, why is this child not diagnosed???????? Would it get you access to services? 

Do you have a BCBA for your other kids? Who is supervising their ABA? So you maybe have her texting or phone and you call her and set up a chat. And your insurance pays for it, but you start talking about this child. And you go ok this is where he's at and I'm realizing that all his things are ALSO AUTISM and what do I do??? And she goes let's start at the beginning, he's stressed, let's lower stress. Pair, what makes him feel good. Go back to basics. But yeah, maybe milk the resources you already have, kwim?

Could anyone handle one or two of your kids for a few weeks? Like do you have a grandparent or aunt who can handle them? If you could send out the 12 and 10 yo for a bit, you could handle the 8 and 6, get them on track, then bring the others back. Otherwise, I'd probably focus on getting the 12 and 10 independent (or let them go to seed) and focus on the 8 and 6 yos. Or just let 12/10/8 run amuck and get the 6 yo on track. 

Have you done anything with joint attention or RDI? It's something you could do with ALL your kids. That way you'd have ONE GOAL and apply it to each kid as you have time. If academics help them feel structured and safe, then continue. If they'd rather play nintendo all day, I'd let them and just focus on a couple goals and getting your 6 yo doing better. Dropping demands is a a reasonable thing to do during stress. If it would reduce stress, you could drop academics. Also you could test ALL your kids for retained reflexes. 

Well I'm sorry your little one is so stressed. That's hard. And you're pulled in so many directions, so that's hard. Realistically, you're not going to be doing a lot of anything fancy when a dc is stimming and stressed, kwim? First thing is to get the stress down, the interaction and calm up. Then he's in ready to learn and ready to do things with you in increasing bits. 

1 hour ago, Cake and Pi said:

I already own RightStart

Oh I didn't realize! Well fine, go for it, see what happens. 1st edition is what I used with my dd. You'll know if it's not clicking, lol.

2 hours ago, Cake and Pi said:

What is different about Ronit Bird? How does it work? 

Ronit Bird is a lady out of the UK who specializes in dyscalculia. She has a website with lots of free resources, several print books, terrific ebooks, an informative FB page, etc. If you like RightStart, you'll love her. But she's really specific to dyscalculia. My dd was fine with RightStart and my ds couldn't even get out of the gate. He couldn't even look at a field of 5 objects and tell you how many were there! 

But yeah, I would just try the RightStart, since you have it, see what happens. If it's not clicking, it will be obvious. My ds literally couldn't even do the first lesson. I bought it and it was just blank looks, no go. Now he had been ok with the parts of the Saxon K5 math we did, go figure. I did it with him just to be rogue. It's adorable, lol.

2 hours ago, Cake and Pi said:

He lost his school-based OT this fall at his IEP triennial because his fine motor skills are in the normal range now.

You've gotta love how services are decided. Ugh. Well you clearly know that "in the normal range" isn't good enough for many kids and is used to keep what they have to offer affordable. Your plan to use HWOT seems spot on. You might also want to write in a salt tray, trace your sandpaper letters, that kind of thing.

2 hours ago, Cake and Pi said:

He makes wonderfully detailed drawings and loves to color. We tried mazes and he didn't seem to get the point of them.

Oh this is really interesting. See our SLP had this theory that when kids have a glitch in one part of their development, that brain energy has to go *somewhere* and it funnels around, looking for other things. So his drawing is developing using the brain energy that could have gone to speech possibly. My ds was that way, with outlandish fine motor skills at ages 1 and 2. Once we started speech therapy, it redirected that energy back and his fine motor started to go back to normal for age and eventually was behind, qualifying him. So to me, I'm always looking for where unusual energy is being funneled as a sign that we could chose to funnel that back a different direction. 

Well there's a great reason not to do mazes, lol. My dd is almost 21, and when she was young I used to say my dd didn't do (insert thing, xyz) because she was so (insert words like awesome, creative, truly artistic, blah blah). Well she is awesome and creative and all that, but she wasn't doing those other things because they were HARD for her and hitting her DISABILITY.

So my learned the hard way advice is that when a dc is totally shying away from a developmentally typical activity, I want to know why and want to consider whether there are precursor skills missing or some other reason. Maybe he just needs the support or a simple enough version to realize he'd enjoy doing it, kwim? What happens if he does mazes with something physical like the little balls you guide through a maze with a magnet wand?

2 hours ago, Cake and Pi said:

Not so far, but we were notified last week that they will be! 

Good. What about your private providers? Around here anyone wanting to stay in business is going tele in a hot flash.

[PeterPan]

2 hours ago, Cake and Pi said:

That said, he does have age-appropriate understanding of single spoken words. It's when words are strung together that his comprehension breaks down.

I wanted to come back to this. I'm trying to think of what SIMPLE things you can do right now. If he wants to make a request, how does he do it? 

That's where you start, with how he makes requests. If he's used to making requests with pointing or grunting, then we need to move that up to one word. If he's used to making requests with one word, we want to move that up to two words. And honestly, the language you're going to use for those two words should be very simplified. We did things like "me do" "put on" etc. Some of the ugliness of the process works out later.

So if you want a simple thing you can do that will make a noticeable difference, that's it. 

Then I would get some preschool activities. I used the MFW preschool activity cards with my ds right about the age your ds is. They might be too complicated or they might be great. But ANYTHING you have lying around will work. Simple games, Djeco art kits, anything. And merge your language goal (increasing from no words to 1 word, from 1 word to 2 words, whatever his next step is) into that. So every time he wants something, he uses his language. So then you have a high language activity (hopefully something with some colors, turn taking, etc.) and you're hitting language goals. 

I would stop describing his echolalia as nonfunctional, because it IS functional and it's a normal, appropriate stage of language learning indicating his brain is TRYING super stinking hard to learn language. Problem is it's going whole to parts. So you really have to bring in the parts to whole. The Northern Speech Services materials, especially their book, can explain that. If you want open and go, I really like the SPARC books. I would start with just one, maybe this one https://www.linguisystems.com/Products/31161/sparc-for-concepts.aspx 

I would see if you can get access to materials on VBA=verbal behavior analysis. You need to know what the BCBAs are saying about language development, because the SLPs are not typically versed on it. It will help you recognize simple goals you can have. They'll use terms like manding and tacting, things you already know from your other kids doing ABA. Is there a reason your ABA people are not coming to your home? Are you far away from services? Even then, the BCBA should hire someone and get you in home. You can't do that now. It's just in home can be better for some kids. And maybe, with 4 kids, they could do some things together and save you the driving hassle too. I don't know, just thinking out loud.

Have you ever considered some kind of AAC software with him? LAMP is 50% off. We got it late in the process with my ds, and it turned out he couldn't use it. He couldn't use it because with his language issues he didn't actually understand the language well enough to select the buttons. But the flip side is, you can use AAC to TEACH the language. And if you have an AAC app lying around, it might be worth playing with as a way to generalize, another way to explore whatever you're working on. (two word utterances, attributes, whatever)

Well I was trying to think simple and got lost in my thoughts.  https://www.linguisystems.com/Products/31856/spotlight-on-vocabulary-level-1-6book-set.aspx  We got a LOT of mileage with this series. It's not the only way to kill a cat, but it's good stuff. He might barely be ready for it. Technically you can hit these skills lots of other ways (games, naturalistically in life, with literature, etc.), but it's so so nice to have an open and go workbook.

There's a file of an older oop 100% vocabulary book by rothstein that is TERRIFIC, highly recommend. I'm not sure if we can still find it. Here, see if this works http://www.e4thai.com/e4e/images/pdf2/100_vocabulary_primary.pdf  It's what I used as the spine for my ds' language intervention. If it's not what you want to use, it at least gives you a sense of some of the skills to hit. Also you can find the checklists used for the VBMAPP online. It almost sounds like ANYTHING you do where he forms short sentences of 2-3 words, over and over, will be of value.

Edited March 24, 2020 by PeterPan

[PeterPan]

DeGaetano's stuff on this site https://greatideasforteaching.com  is GOLD. 

[Cake and Pi]

5 hours ago, PeterPan said:

You're describing autism.

...snip...

Is there a reason they're not getting him diagnosed?

He was evaluated for autism at 3.5yo by a 3-person multidisciplinary team in developmental peds at a huge children's hospital that serves a 7-state region in the West. At the time he was pretty delayed across the board with most skills in the 0.1% and a relative strength (2nd%) in visual reception, an estimated IQ in the 50s and an adaptive composite in the low 60s. He had very delayed social skills, but everything was delayed fairly similarly. Social skills were at the level of a 14mo, but receptive language and play skills were in the 10-11mo range, and then he had fine motor, gross motor, and expressive language all clustered in the 19-22mo range. They said the ADOS was technically inconclusive, but they felt strongly that he did not fit an ASD diagnosis.

From the report: "... he does not meet diagnostic criteria for autism spectrum disorder. Cognitive testing is significant for overall delays which are most significant in language, especially receptive language. Social interactions, overall, appeared consistent with his development. At this time it does not appear that autism would be an accurate diagnosis."

We did a follow up at 4.5yo but the developmental pediatrician didn't feel a repeat of the ADOS was warranted. They commented on notable gains in language skills (up to 2nd% receptive, 8th% expressive iirc) and sent us on our way.

Neuropsychology saw him right after his 6th birthday and reported, "Similar to his earlier evaluation with [big regional children's hospital name] Developmental Pediatrics, it is our impression that M is a socially related child and from informal observation, a diagnosis of autism spectrum disorder (ASD) is not likely."

5 hours ago, PeterPan said:

I highly doubt that IQ score is accurate.

I have my doubts as well. I mean, at 3 they thought it was in the low 50s, at 4.5 a non-verbal IQ test was borderline, and now we've got this low-average score. It just keeps going up as he gets older, or as I see it, as his receptive language improves. That said, he did get exactly the same score on the WIPPSI and the WISC 6 months apart, which makes it feel more likely to be accurate.

5 hours ago, PeterPan said:

So doesn't that sound like a highly bright child in a highly challenged body/neurology? Sure sounds like it to me.

I go back and forth on this. Sometimes I get glimpses and I'm like, "Yes! There is someone really smart inside this little boy dying to get out!" He checks some gifted boxes, especially emotional sensitivity, and his memory can at times be phenomenal.

And then other times it feels like wishful, unfair thinking, like I'm failing at accepting him for who he is just because he's nothing like I expected. 

His current IQ estimate is like 4 standard deviations below his brothers, who are all clustered within about a 5-point range. 

5 hours ago, PeterPan said:

Does he *function* like a person with a low-average IQ? I mean, I'm not wanting to get your hopes up. I'm just saying IQ is a construct. Did they do a TONI or a nonverbal IQ test of some kind? He has a severe, severe language delay that is going to mess with all testing. I would work with him the way he really functions and ignore the numbers. Is he CURIOUS? Does he surprise you on things?

No, he functions like a gifted person with an ID, lol. His adaptive scores are in the 60s. He requires an immense amount of care at home, and in many ways just seems like a child several years younger than he is.

However, he also has splinter skills, amazing spatial skills, and he occasionally does something incredible. Like, he knows where everything is (unless he, personally, lost it). If something is lost by me or one of his brothers, he can point to it or take me to it. I've seen him do things like draw pictures upside down so that they're oriented correctly for the person he wants to look at them. And today when I was working with him trying to check his skills, I asked him to do something he either couldn't or didn't want to do and -- I kid you not -- he wrote "no" so that I could read it and it was completely sideways for him!

And, yes, he is curious. He randomly asks some pretty creative questions. "Do adults have birthdays?" "Do cars have houses?"

5 hours ago, PeterPan said:

I'm not sure your SLP is meeting your needs here. This is a level of language problem that needs HOURS EVERY DAY, not one hour a week. That's why a BCBA who is supervising and setting goals using the Verbal Behavior Approach and those roadmaps is what you need.                                            Verbal Behavior Analysis: Inducing and Expanding New Verbal Capabilities in Children with Language Delays

I'm not too happy with what they're doing in speech this year at school. Last year he had an hour of speech and 30 minutes of sped 4 days a week. This year they switched it to 30 min of speech and an hour of sped 4x per week. Previously speech was working on language. This year they seem to have changed gears to focus on his articulation, which, admittedly, is in need of some help, but what I *want* them to work on is language, especially receptive.

The problem is that DS 6 is remarkably good at having conversations now. He's made tremendous progress with his expressive language in the last year. You can now talk to him and he says completely appropriate things back, but if you keep this up long enough, at some point he says something so completely off the wall that you realize he has no idea what the heck your talking about. So the folks at his school like to try and say that he's doing so well and has met his language goals, but I think they're missing some pretty significant issues. Private SLP and neuropsych both noticed it and pointed out that he's still using scripted language and echolalia, but he does it so fluidly now that it's hard to get the school to agree with me. (We've only been doing private speech during the summers.)

4 hours ago, PeterPan said:

If he wants to make a request, how does he do it? 

He does a lot of humming, vocalizing, and reaching, but he also speaks in complete sentences. Some verbal interactions from today (changed to correct pronunciation for ease of reading and typing):

Him: Ah ah ah ah ah.
Me: Use your words.
Him: Mama, can I has a piece of paper so I can draw star?
Me: Here you go, buddy.
*climbs onto my lap and starts talking as he traces a stencil*
Him: See the pencil keeps going and making the bumps. See I made it. And have to put them in, right? We have to first make the circles. I made it! I made one of these!

*Later in the day. He's not wearing pants and it's cold in our house.*
Him: I want you to know where the blanket was?
Me: I don't know. I haven't seen it.
Him: But where's the blanket that I was holding?
Me: Are you cold? I wear pants when it's cold. Pants.
*He walks away and comes back a few minutes later, wearing pants -- this is a relatively new skill, putting on pants by himself*
Him: Mama, two chocolate chips for had pants on?
*I reward him with a chocolate chip*
Him: These are my last pair of pants. Why do I have more shirts?
Me: Well, you have long sleeve and short sleeve shirts in your dresser, but your shorts are put away for the winter.
Him: So, we're all shorts together.

My last explanation was just too long and so he didn't understand it. Sometimes I just forget to change the way I speak to accommodate him. I usually try to say a normal sentence followed by a pause and a short phrase or key word from the longer sentence. Not sure if this is legit, but I'm hoping to both expose him to longer sentences with correct grammar and syntax and whatnot, while still getting him to understand what I'm trying to say. It seems to work most of the time.

Articulation example: "My wook why an jus take tuff off?" = "My work why and just take stuff off?" -- That was him asking me how the thing he glued to his paper fell off.

It got late quickly this evening! I'll be back tomorrow to continue...

Edited March 24, 2020 by Cake and Pi
fixed typos, added something

[PeterPan]

https://sites.udel.edu/chs-tell/for-clinicians/info-slides-links/  This might give you some practical ideas.

 

[Cake and Pi]

Following up...

Retained reflexes: Couldn't find a site with instructions on how to check for these. My google fu skills have failed me. Anyone have a link I could follow?

Clapping a rythm: Nope, can't do it, even if I ask him to clap along with me.

Barton screening: Failed all parts. Part A: Could only repeat back the shortest sentence. Repeated them for him a few times and he was able to get one more, but still didn't pull down tiles for each word. Part B: Got the 1 and 2 syllable words correct! Got all the 3 and 4 syllable words wrong. Part D : He did surprisingly well on this part! He only got 5 wrong (max wrong allowed = 2). He needed a lot of repetition, and he was pretty confused at first about using the same color tile for the same sound. His mistakes were often repeating the correct sounds in the wrong order or repeating the correct sounds in the correct order but then not getting the corresponding tiles right (e.g. the sounds were s/sh/s, he said s/sh/s but then pulled down red/red/yellow).

Aaaand, a slight hiccup in my plans... I failed the Barton tutor screening. DH gave DS 6 the student screening for me while I watched. However, doing a daily reading lesson is not something he could do for me every day, or even most days. He could probably work with DS 6 on something like this about twice a week, so I need to figure something out.

So, uh, what do I do to make myself Barton-tutor worthy? I am a slow but fluent reader. I use highlighting or a piece of paper under the line I'm reading to make it easier. I'm probably dyslexic, but I was never diagnosed and never received any interventions because my mom was convinced I was really smart and just being lazy. (Thanks, Mom.) I eventually (in 4th grade!) figured out how to read all on my own, but I think I did it by memorizing whole words like they were individual pictures. When I used TYCTR in 100EZ Lessons with my oldest, I learned a bunch of phonics (-igh says "I," lol!) and I can totally sound out words now. But, I bombed the first part of the tutor screening where you're supposed to pull down tiles for each sound in the word and then change or remove sounds. I did well on the second part, where she gives the sounds and you say the word.

[Cake and Pi]

12 minutes ago, square_25 said:

You could hear it all well and everything, right? The first time I tried it, I did it on my phone, and I just couldn't do it because of what turned out to be bad speaker and volume issues. I didn't have any trouble when I did it on the laptop. 

Yeah, I've got great speakers set up on my desk top. I did things like only pulled down 3 tiles when I was supposed to pull down 4, pulled down 4 when I was supposed to get 5, straight up couldn't think of what the "word" would sound like with a sound taken out. I couldn't remember the sounds separately. I could remember the whole "word" of sounds, but then when one was taken away, I couldn't think of what would be left. If I'd written it down I totally could have done it, but she said specifically not to write anything.

[Terabith]

Okay....yeah, I don't think Barton is a good plan for either of you.  I mean, I thought it was going to be a struggle for him, given the limited auditory memory and phonemic manipulation issues.  But, not a good fit for you, either.  So just take it off the table.  Boom.

I think Peter Pan's plans of focusing on LANGUAGE skills would honestly get you more day to day functionality than working on reading.  I mean, I'd take a look at ABeCeDarian.  It's a Phonographix approach and less rule based.  It might be a better fit.  But it sounds like he's six but not really functioning globally at the level of a six year old.  So I'd look at what would benefit his life NOW, and language and adaptive skills is probably the thing that would give you the most bang for your buck.  

I probably wouldn't work on "academic" skills at all.  I'd work on therapy level receptive and expressive language skills, play, and adaptive, independent functioning.  I mean, if he can't dress himself, is being able to add really going to benefit him or you?  

[PeterPan]

46 minutes ago, Cake and Pi said:

I failed the Barton tutor screening.

So that's why she has the tutor screening.   It's not the end of the world, so don't get discouraged or jump the gun.

3 minutes ago, square_25 said:

Hmmmm. It does sound like you wouldn't be able to do this with him :-(. 

I don't think it's quite as dramatic and dire as that. What it definitely means is that she will struggle unless she remediates her *own* phonological processing issues. It does *not* mean she can never tutor her own dc. There are dyslexic OG tutors, absolutely! But what it *does* mean on a practical level is she has an additional hurdle, something that would need more time.

So on the plus side, you've made a clear path to him being diagnosed with SLDs, because mom with SLD, dc, genetic, boom. Like no need to beat around the bush or wonder, kwim?

51 minutes ago, Cake and Pi said:

Part D : He did surprisingly well on this part! He only got 5 wrong (max wrong allowed = 2). He needed a lot of repetition, and he was pretty confused at first about using the same color tile for the same sound. His mistakes were often repeating the correct sounds in the wrong order or repeating the correct sounds in the correct order but then not getting the corresponding tiles right (e.g. the sounds were s/sh/s, he said s/sh/s but then pulled down red/red/yellow).

This is the one I'm MOST concerned with. Like let's look at all three sections but they're testing several things here for a functional level of how the skills converge. Some of the things being tested are working memory, and you already know he has a severe disability in working memory. So we're not astonished that he's scoring low in areas on the screening tool that are drawing on working memory. You could even decide to move forward and support that if everything else is in place, kwim? So I'd be looking at everything else that is factoring in.

Ok, so what you labeled as part D is part C. The task is pulling down individual letter tiles for each sound. It's a very low working memory drain, almost as low as you can get and spell a CVC word. So I would suggest that we're seeing where his phonological processing and developmental skills are. I'm saying developmental, because you keep not liking autism. But yes, 1:1 correspondence is another autism issue. So the idiot psychs can say all day long no autism, and you keep saying autism issues. Go in any autism school, and what are they working on? 1:1 correspondence. And what is he having trouble with? Not meaning to be irritable, just saying. 

So I think you're probably seeing a convergence of a couple weaknesses there. And it seems to me that doing the intervention, you don't want to frustrate him, because if the task uses multiple skills too much (ie. is too high level), it's expecting too much at once. So then if you break it apart, like ability to do the 1:1 correspondence from the ability to distinguish the sounds, THEN you can pull them together. But you've got multiple skills there. 

That means that jumping in too deep, too fast is just gonna make him drown. I DO think what you're seeing is that he was making progress with Fundations. I mean, seriously, given that you failed the screening and that he possibly has your genes, it just seems likely. So that is really GOOD! That's a good sign that he has the ABILITY to learn. That seems like a really positive thing. 

58 minutes ago, Cake and Pi said:

Part B: Got the 1 and 2 syllable words correct! Got all the 3 and 4 syllable words wrong.

Ok, here's the thing. I'm going to stop and ask *why* he got them wrong. I'm not disagreeing he needs tier 3 intervention. It's just when your situation has layers of complexity, you don't want only one explanation. Otherwise you're missing all the things factoring in. You want to know what part of this is developmental, like frontal lobes and attention. What part of this is maybe a math disability, that he really doesn't even have a strong concept of 3/4. What part of this is language (not processing bits or not knowing the words to be able to repeat them even). Was he able to *repeat* the words even? Just wondering.

Again, I think this is a tread slowly, look at all the angles, bring it in reach.

1 hour ago, Cake and Pi said:

Failed all parts. Part A: Could only repeat back the shortest sentence. Repeated them for him a few times and he was able to get one more, but still didn't pull down tiles for each word.

Given the severe level of his echolalia and that most of the conversation you transcribed earlier sounded scripted, this isn't astonishing. He is not processing words individually but is memorizing language in terms of phrases and chunks attached to situations. Therefore he can't count words. It means his most severe need right now is *language work*.

If you got him qualified for ABA, the BCBA could set up a plan for his language and give you hours. There's no reason why he can't improve, but he needs hours. Not 1 hour a week of SLP but hours daily. When I was pushing on my ds, we were doing 2-3 hours a day. We made dramatic progress at that rate. My ds wasn't as severe as yours and I grant didn't have the brain injury complication. But I'm not sure it's helping you for them to say it's *one thing* kwim? It just doesn't make sense. If they'd look at it as layers, they could peel away they layers and address each layer. So the autism and the brain injury interwine. They merge and make both more complicated. The SLDs on top of that are real too.

I think this pretest shows he has potential! Seriously. He probably would have scored much worse before he started in Fundations. He just needs a lot more intervention. The only question is what and how to give it and how to *prioritize*. 

Your worst case scenario is to teach in a very disconnected way, like teaching letters and spelling and reading over here and having it be completely disconnected from meaning over there. So if you can run language intervention and phonological processing parallel, that would be ideal. If you could begin reading about hyperlexia (Cartwright book, maybe the one AAPC sells that I didn't think was that great), that would be something to do while you're doing the intervention. Sort of to get the big picture. 

That stuff from Northern Speech Services on echolalia is solid. I don't know, I usually just make a lot of leaps and skim books, lol. Maybe just read the description and get the jist? I mean, they tell you a lot in the free videos. Then choose for yourself what to prioritize and what you think the intervention order is. I think running parallel strands would be very wise. I think pushing forward too much would be early. I think maybe working on discrimination and LIPS/Barton 1 skills while going BANG UP HARD on language could be a really solid plan. It would not take a lot of work, given how young he is, to get some of his language to catch up maybe to what he would then be ready to read.

Think about it. Early reading material is both low decoding AND low for syntactical complexity. So the language is lower and the decoding. So you could make it your goal to get his LANGUAGE up to where he at least comprehends what he's decoding. Lecka has talked about this with instruction for her ds. She was like ok we can either push push push decoding, or we can keep decoding paired to language comprehension. It doesn't look so astonishing, but it's more practical. It would be an attempt to head off the hyperlexia.

And if that doesn't make sense to you, go look at your Bob Books and really think about the syntactical structures. Would he understand those? If not, then you can do enough language intervention to get him there and in parallel get the decoding there.

More later if more occurs to me.

[PeterPan]

1 hour ago, Cake and Pi said:

Clapping a rythm: Nope, can't do it, even if I ask him to clap along with me.

Ok, so we've had people go from bottom of the basement working memory scores to functional (mid-30s percentile) with Interactive Metronome. Thing is, it's almost seemingly out of reach for your kids. With my ds, I started with hand over hand. He was about the age of yours. We used an alphabet puzzle and I would say the sounds and tap as we hand over hand. It was just a physical way to track how many trials. It's your basic ABA stuff, because this is wicked hard. So you're going to start with a trial of like 6 and see if he can allow you to do hand over hand and clap together to the rhythm 6 times, stop, praise, done. Repeat daily. Repeat a few times a day if you want. Nuts, do it with all your kids. 

Heathermomster has posted instructions, but jist is 54 bpm once they're able to use a metronome app and keep beat. You can do midline exercises, tapping, balls, anything you want. I've added in directionality, RAN/RAS (you'll do this eventually, if you do it it will SPEED UP YOUR READING!!!), etc. Free, easy to do. Just have to start where they really are and don't exasperate them. Patience pays off here. You're a pitbull with lipstick remember.

1 hour ago, Cake and Pi said:

Retained reflexes: Couldn't find a site with instructions on how to check for these. My google fu skills have failed me. Anyone have a link I could follow?

https://www.brmtusa.com/what-are-reflexes  Here's a link to get you started. It has a list, and then you can look on Youtube for videos for the tests and interventions for each. We did exercises with an OT but didn't make good progress. Eventually we got referred to a PT who was using the instructions from Pyramid of Potential. THOSE exercises worked BRILLIANTLY for my ds. And I have *not* seen anything online like them. The PoP lady has a lower priced ($35?) dvd that I think contains many of the exercises. So I'm all for free, but the PoP exercises are what the PT used with us. The change when you get reflexes integrated can be DRAMATIC and some kids will have a language bump. There's a reason, something about the brain and development. My ds had the language bump and our SLP has had it happen with kids many times. She only hires OTs who will do reflexes, so now you can be pissed that OTs are NOT doing this. Burns me up the way the system works. Whatever. 

So yeah, this will be useful probably to all your kids to some degree. Do the exercises yourself too. This is GROUP THERAPY, haha. Everybody does metronome, everybody does reflexes. And if you do the exercises 3-4 times a day for just a few minutes, all the better. Instead of thinking academics, academics, try making a 6 week push on ONE THING and really nail it. The reflexes could be that. In fact, just my two cents, but if you're feeling really pushed and have about as easy a household as you probably do (haha, I'm feeling with you because you basically have FOUR of my ds, lol), I would do the reflex work. The ceiling will come off, things will get wild, then it will settle down. And after the reflexes are integrated in say 6 weeks (you'll know when it happens), THEN do metronome work and phonological processing. At least that's my advice.

 

[PeterPan]

11 minutes ago, square_25 said:

Good to know. I'm not experienced with this, clearly!! 

Haha, my experience says not to believe CAN'T. She's gonna get a lot of can'ts, and that needs to be CAN'T YET. A dedicated mom can make almost anything happen she sets her mind to. And if she can't, then she can put her money and energy into advocating and hiring. I think there's a lot more the ps could be compelled to do here, clearly. It's outrageous he's not getting more language intervention/goals and PT at the very least. Or maybe he is? 

But no, don't believe in what you can't do. It's just being honest and saying I have time and energy to give to it or I don't and need to outsource. The dh *might* be a good plan. Honestly, if he's not really motivated, he might not be the right one. I don't know, see how it goes. Around here, we have OG tutors who specialize in ASD. There are SLPs who specialize in reading. Someone like that will often be trained in OG *and* have their SLP tools. That could be a really powerful option if she got funding to get a person like that. 

But yeah, I'm pretty rah rah. Homeschoolers do things every day of the week they told us couldn't be done. Just be honest is all.

 

[PeterPan]

14 minutes ago, square_25 said:

I think at some point it's just a naming issue. I would assume that the professionals she's working with have a reason not to call him autistic. That doesn't mean that none of the issues will overlap with autism or that the techniques will not be helpful. But it may not be the most helpful label for him. 

His last ADOS was at 3.5

Look, I'm not as veteran as some people, but I've been around long enough to see a lot of psychs be wrong. I've seen a lot of labels CHANGE on kids, change as they become older, change as things became more apparent.

Ain't no psych gospel and it's more likely for a diagnosis to change, expand, become more complex, be added to. Let's start a collection here on the board with how many people's kids got diagnosed at 14 finally, after having seen multiple psychs over the years. Happens ALL THE TIME. 

Some things become more obvious with time. I deleted lots of stories, because it's obvious she doesn't want to go there yet. I met a boy who was maybe pretty similar, with brain damage from a surgery plus ASD plus being from a highly gifted family. I really liked him, because he had this layer of intensity (from the biological giftedness) that was just really engaging. But when you combined the ASD and the brain damage his functionality was incredibly poor. Like really sad, significant support. Sigh. 

And I think some kids are like theological watermelons. You know how they explain the Trinity by saying it's like watermelons and hard to hold all three at once? Well there you go. I'm saying it's like holding a bunch of watermelons at once. Genes for all kinds of stuff plus the brain damage. And to hold tightly to any one explanation just drops all the rest of the issues. I'm saying to juggle watermelons.

[PeterPan]

29 minutes ago, Terabith said:

language and adaptive skills is probably the thing that would give you the most bang for your buck.  

I probably wouldn't work on "academic" skills at all.  I'd work on therapy level receptive and expressive language skills, play, and adaptive, independent functioning.  I mean, if he can't dress himself, is being able to add really going to benefit him or you?  

You know, kids are funny. Like I'm all for language work (says the woman who was willing to do it 2-3 hours a day, lol), life skills, phonological processing, etc. But I think it's intriguing also to ask what HE wants. What interests him? What captures his attention or seems like something he wants to learn? What is he motivated by?

He's so contradictory, so multi-faceted, I don't think I'd teach him like he's all the way one thing either. Like to say well he's this, he's whatever, I don't know. You want him to feel fulfilled, successful, like he engages with part of his learning or it scratches his itch. What is his itch?

What are things you could do that would improve his quality of life? You've said he spends a lot of time humming. Is he stressed? Would self-awareness and self-advocacy help? Leisure skills? Play skills? I don't know, I think I'd add one more thing to the list, something that makes his life good or scratches his itch. Or both if you have enough time, lol.

[PeterPan]

Here's an example of makes life good.

https://www.amazon.com/gp/product/B00NG4OPRG/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1  

We did these velvet coloring posters together when my ds was that age. They're great, not too hard, good for joint attention, pairing, a great reward/motivator, and a great break. They're something anyone can do with him too, very handy. And they get him some more fine motor. We used Crayola Supertips for the markers. 

[PeterPan]

I'm going to be really interested to hear how he does with the RightStart. @Cake and Pi do you feel like you have a disability of number sense as well? Some people with dyslexa also have dyscalculia (number sense disability) but not all. And SLD math is a larger umbrella, with things like issues with computation and word problems. My ds has had funky issues understanding the language of math *and* he needed the number sense work. So he could still get an SLD label for the math eventually, even if his number sense is relatively intact.

I think I'm just making conversation there, lol. It will just be interesting to see. Ronit Bird was astonishing for my ds, totally unlocked his ability to do math. 

[PeterPan]

Ok, this is a total, total aside, but does he listen to audiobooks? Once you get the school, anyone to give paper trail on that dyslexia, you can get him hooked up with BARD/NLS. My ds would listen to audiobooks, even when he was still scripting and echolalic. He even was listening to Great Courses (the college level stuff) at 5, lol. And it's not so hot for pushing absolute comprehension but not so crazy either. Sometimes it really scratched their itch. And I think, given how complex he is, it would just be really interesting to see what would happen if you gave him access to something with a much higher ceiling. Who knows, kwim? Like just have it around, see what happens. My ds would listen to a McCullough book one day and Beverly Cleary the next, I kid you not. You might just download some stuff, maybe something you can get free through your library system (free!!!) and just see what happens.

[Terabith]

My younger kid could NOT handle Right Start, and she actually has pretty good number sense.  But even the first edition, which is what we have, required way more working memory than she had.  We kind of got through A, but B was just right out, and I actually went straight to B with my older one when she was 4.5.  I love Right Start, but it really is pretty heavy on the working memory front.  You've got it, so it's certainly worth a shot, but we had way better luck with just playing the cuissinaire rods and Education Unboxed.  I think my kid actually has some low level PTSD from the abacus.  It's such a stellar tool, but even now when I try to pull it out to illustrate a concept, she literally breaks out into hives.  

[PeterPan]

26 minutes ago, Terabith said:

the abacus.  It's such a stellar tool

And see, I would say it's not! To a more math typical person, the abacus makes sense. To my ds, the abacus was total greek. Everything in RS was total greek, lol. The instruction in Ronit Bird breaks everything into *much smaller steps* which is what it took. RS A, for instance, is going to start immediately with visualizing quantities 1-5, like boom of course you can, just in one lesson, just because we said to. Ronit Bird will give you enough activities to spend an entire week learning to visualizing the number 3. Actually I don't remember how long we spent, maybe longer. Was it a month? I remember it droning on and on. And ds was 5, gifted IQ, and I had this mantra of "embrace the pace" because I couldn't look ahead AT ALL or I'd go crazy and go too fast and overwhelm him, lol. 

I still have to do that. I read just what we need, and then we stop and stay there till it clicks. So the difference between RightStart and Ronit Bird is sorta like OG/Wilson vs. SWR. SWR is great, but it makes a lot of assumptions about skills being intact and that the instructor can say do it and the dc will be able to. Intervention level programs, tier 3, are gonna make no assumptions and break it down to the most tedious little steps so the dc can be successful.

My dd had some trouble learning multiplication. She did great with add/subtract and I LOVED the way RightStart taught 4 digit subtraction. I taught my ds to do it that way too, absolutely yes. But for multiplication, RightStart just really drops the ball. It honestly embarasses me, because I look at how much better my instruction is for ds, more thorough, and I'm just like wow I could have done better with dd. Sigh. 

Whatever, those are just total asides.

I got really inspired by this discussion btw and went back to Audible. I haven't been a member for a few years since we got our BARD/NLS. I don't really need them for audiobooks, but they have a super stash of Great Courses. We were talking itch here and scratching the itch and it occurred to me maybe it was time to get that for ds again. He's super psyched and now has 3 new Great Courses downloaded and is in bed SO HAPPY. And one of them The Art of Negotiating the Best Deal  totally surprised me. Now granted, the guy speaks really slowly and clearly. But still, I go back to my point that you NEVER KNOW what will unlock kids, what they enjoy, what they're interested in. My ds is like OF COURSE I want to know that I'm not paying too much! LOL Isn't he hilarious? He cracks me up. You just never know, so you just try things. So in the same day he's spelling with a really basic level phonics box from Lakeshore Learning (think K5 level) and enjoying an adult/college level Great Courses. Kids can be contradictory and we can try to bring things in their world that hit them at all the levels. 

Oh, and it wasn't like I didn't teach spelling. I did teach him spelling with Barton, but it was clear it was just kind of jibberish, not connected to meaning or usage for him. So I was like fine, we'll just wait. Now HE initiates spelling and is proud when he can spell a word, so we're going forward with it again. He's actually developmentally ready and connecting the spelling and the power of it, the usage, the meaning. 

You can file that away in your "it's ok to do what really fits your kid because I know other people have had that happen" file, lol.

[Terabith]

That's hilarious about the course he picked out!!!  I love it!  

Yeah, Right Start was brilliant at addition and subtraction but pretty much rubbish for multiplication.  I LOVED it with my oldest for B, liked it for the first half of C, but then we mostly finished C but didn't continue onto D.  We switched over to a mish mash of Singapore, CLE, and Beast Academy.  

[PeterPan]

I had some math-ish things I did with ds when I didn't know what to do. You could think up your own pile.

-Lakeshore learning has different kinds of games where you match coins to quantities in little puzzles

-number ordering puzzles. You can make these or buy them. You can print them and cut apart.

-board games, simple games

-dot to dots

-anything with patterning--The MFW preschool cards have activities to go with these cool shape/color things. We did those around age 6 iirc. We did a math unit by GEMS on Frog & Toad. I never realized my ds had issues with categorizing till we did that. It was honestly unbelievable that he couldn't do the sorting. He was 6 at the time, not yet diagnosed I think. It was just eye opening, because I THOUGHT he was fine on so many things. I thought he was pulling my leg or being oppositional, and then I realized he flat couldn't. Now he learned relatively quickly, but it's still an issue. Sorting still shows up as an issue we've had to work on in life. It's a language thing too and working on it in language helps with the real life sorting, adaptive living stuff. If you want to make life good, SORT things, lol. Sort anything you want, stuff for science, pictures, laundry, pictures of money, your math manipulatives, whatever. And remember that 1:1 with the Barton tiles? How about sorting and doing 1:1 with colored tiles for something other than sounds and seeing what happens? That's how math works, yes? We have a mental box and have relationships (part whole circles, whatever you want to call it). 

-anything with graphing-- These are all great. https://www.teachercreated.com/products/search-results.php?q=graphing+art

It has gotten harder, as he has gotten older, to embrace where he's really at and be creative and keep on top of it. I have to remind myself sometimes to keep my juices flowing, lol.

[Terabith]

4 minutes ago, square_25 said:

What did it do for multiplication? 

I don’t remember in detail.  Mostly skip counting, I think.  It did teach the concept but didn’t spend a ton of time on it, and since my kid was six, maybe that was the issue?  It did teach the fact that the nines table digits add up to nine, which was a cool thing I hadn’t noticed before.  We did a lot of trains with c-rods on our own and then did a lot of Waldorfy stuff to work on memorizing them.  (Drawing, clapping rhymes, songs, stories).  But we also worked through the Beast Academy stuff, which was a lot more engaging.  

[PeterPan]

8 minutes ago, square_25 said:

What did it do for multiplication? 

Not the one you asked, but crap nothing. Look at patterns and notice the digits. Memorize by playing games. It was so worthless and ineffective for my dd.

By contrast, with my ds we're going through learning key facts, memorizing them, learning more relationships (how they turn into division, fractions, and percentages problems), and then using those key facts to SCALE to solve the others. Everything very carefully visualized, very nitpicky. If I ever get through it with ds, I anticipate he'll be WAY better at multiplication facts than my dd was.

So yeah, don't get me started out how much RS sucks for multiplication. We suffered for years. With ds I'm getting the chance to try again another way and it's SO much better. 

[PeterPan]

This is for @Cake and Pi but remember working memory is the scratch pad of the brain and essential for long term learning. So when we're saying can we get addition facts learned, can we get multiplication learned, we're partly saying can we get it from short term to long term. And that requires that working memory. So because it's really low, you may end up needing a lot more repetition. And just to meet him where he is, it may need to be repetition across a variety of settings. Like for my ds, he'd be able to do 2+5 in a flashcard app and then not for a worksheet. Or he'd know it in the worksheet and with dots and in the app and then not know it all over again when we pulled out a hundreds chart.

But anyways, yeah it's going to get interesting because of the low working memory. I guess see what happens with the retained reflexes. If you get them integrated, especially any STNR/ATNR, then you can look at the attention question again. If he still is showing ADHD after those reflexes are integrated, you could consider meds for the ADHD. They'd bump the working memory and might make him easier to teach. We've had some stories here to that effect that some kids are able to do stuff on their ADHD meds that they flat can't do off.

Total aside, but there's also some research going on with using Alzheimers meds in this population. The guy on the Epiphany blog talks about it. On some of the kids the meds will get them up into the normal range for IQ. Kind of wild.

Edited March 25, 2020 by PeterPan

[Terabith]

Yes, it laid such an amazing foundation even with adding that *I* had all these light bulbs going off.  It was so careful and systematic and incredible, and then we get to multiplication and it was just, well, now just memorize it.  There was no thinking.  It felt completely half assed, like she’d started this AMAZING program and then just totally lost steam.  I was legitimately disgusted.  

That said, I don’t think anything compares to B.  If I was teaching my oldest again, I would have gone straight from the first half of C to Beast Academy and CLE for review.  I wouldn’t have dallied with Singapore. If Ronit Bird has been out, I would have used that with Cat, although she actually had rock solid number sense. She just didn’t have enough memory to even hold two numbers in her head, let alone manipulate them in any way.  So mental math was just a terrible fit.  

[PeterPan]

47 minutes ago, Terabith said:

like she’d started this AMAZING program and then just totally lost steam.

Actually that's EXACTLY what happened. RightStart B was her masters thesis. Worked backward to develop A and worked forward to develop others. Now she had a montessori (preschool, school, something) so she had some way to test some. But no, you are exactly right that add/subtract was the most thought out, the most inventive. And even then it's not enough for kids with dyscalculia, at least not mine. And Ronit Bird is everything you liked about RightStart, just more, and keeping up that level of "why didn't I think to explain it that way!" over and over and over, for every single thing. But she's actually in the trenches, tutoring dyscalculia, so she's pushing herself over and over every day to connect and help things connect.

[PeterPan]

On March 23, 2020 at 6:35 PM, Cake and Pi said:

He *does* have mild hearing loss

I thought maybe we could run with some suggestions that were addressing all the other things you raised. I was going on about the (A word) angle, but how would the approach be modified or what would help you with the rest?

So with the hearing loss and the question of APD, is there an issue with background noise? Does his comprehension change if the room is quieter? I'd probably just be watching for that, like what happens if the air conditioner is on, etc. And you might try to use *headphones* any time you're wanting to make sure he gets the input. Or does that make a difference? 

On March 23, 2020 at 6:35 PM, Cake and Pi said:

if you tell him a story with pictures he can sequence the pictures correctly.

There are K5 picture sequencing workbooks you can do and sentence sequencing for little stories. I did them with my ds around this age. So you have been giving him the language, but what if he is repeating the language he's given or creating his own language? You can pair that with your vocabulary goals and syntax targets. For SLPs, vocabulary = both knowing what words mean AND using words as attributes, concepts, etc. etc. That workbook pdf I linked will show you. So, for instance, if this week (or month) you're working on attributes, then you could bring attributes into your picture sequencing narrative. And you would make sure the sentence length fits your goals (4 words, whatever he's hitting successfully). So what that meant with my ds was we had to go through each picture and make a little sentence for each picture. Then we sequenced the picture and finally we could say it in order. You could even then take it farther as a working memory exercise where you repeat the sentence for the picture, he repeats, and build up with him repeating till he is saying all 4-6 sentences for all 4-6 pictures still using the pictures.

That's how SPARC works btw. They start off with single words level comprehension for the targets and have them using them in full narratives by the end. So if you bought one SPARC workbook, like say the one for attributes, you would learn a methodology that you could apply to other materials. Or if you're like no, SPARC is not my pricepoint, then see if they have a sample online and riff it yourself. 

Anyways, that would be a way to make some gains with affordable materials. 

                                            Read, Think, Cut & Paste                                     

                                            Short Story Sequencing, Grades 1-2 - Teacher Reproducibles Print                                       This says gr1-2 and has a lot of text. 

                                            Fairy Tale Sequencing                                      this is much harder

                                            Beginning Sequencing (Learning Line)                                      This looks like a great level. I would start really, really simple, because you want him to be able to nail the language. This is labeled K4-K5. So then if you google it, you're going to find tons of free options online and want to look for materials marked at that level.

                                            What Happens Next? Picture Sequencing Educational Board Game                                      Lauri has a bigger set that I got at an education store that has 3-5 card story sequences.

                                            Carson-Dellosa Learning to Sequence 4-Scene Educational Board Game                                      This one looks like a set to use when you're working on FUNCTIONS=VERBS because it appears to have lots of life skill verbs happening. 

Again, to make this more clear and give you *free* supports, look at the narrative language chart at this link https://mindwingconcepts.com/pages/methodology  So you're going to see that working on verbs and attributes (that "vocabulary" work I linked you to and am suggesting you use as a spine for language intervention) creates the necessary language to do the first TWO STAGES of narrative language development, the descriptive sequence and the action sequence. So your language (vocabulary, syntax) and narrative language goals merge. You're learning bits to build them into a whole of narrative. Right now he has memorized narratives that don't refer back to the right bits. We want to go the other direction and learn bits that we build into narratives.

On March 24, 2020 at 1:35 AM, Cake and Pi said:

And, yes, he is curious. He randomly asks some pretty creative questions. "Do adults have birthdays?" "Do cars have houses?"

I missed this! How interesting. You can never work on asking questions too much. You can write the question words on a foam die and make a little game where he turns over a picture (from that pile of picture sequencing cards, whatever you've got) and asks a question. I have a WH question workbook from SuperDuperInc that I used and someone else here on the boards used. It shows a little picture and then goes through each question (who, what, when, where, why, how) I'm not sure it was so great, but anything in that vein, just keep dripping and doing it. Things like that are not like do it intensely for a week and win. They're more like do it over and over for a year, so I would just put a method, any method, as 5 minutes a day in your plan and just keep hitting it. Keep the length at that the target (4, whatever) and try to make sure every word is understood and supported. 

Also a little in the weeds, stuff you probably already know. Expressive vs. receptive SLPs will talk about this. My point is, you using it and him listening doesn't mean HE can use it. He has to say it for himself and say it more ways, more times, till he can use the target independently in a narrative. And then your VBA people will talk about manding, tacting, etc. I simplify it think to of it as the POWER OF LANGUAGE. Not only is he goes to use it (expressive language), but we want the language to have power. So if you're working on attributes or classiifications or verbs or whatever, he needs to make the target length sentence (4 words, whatever) using the target skill (attributes, category, function, whatever) and it has to have POWER. So you had given the example of asking which cereal he wants, which crayon, which paint, blue or red. There using his target skill now has power.

On March 23, 2020 at 6:35 PM, Cake and Pi said:

He is actually better able to remember a string of gibberish or unrelated words than he can remember ideas in context.

So you can try using the picture supports to build targets into sentences and narratives to build working memory. I go back to can't yet, and I think I wouldn't assume he can't till you've hit the walls. Who knows. If he can say 2 words to a picture (blue dog) and then build to 3 and 4 with full comprehension where he's repeating, that's a lot! That GPP workbook I linked is expensive, but it is specifically building working memory using language. 

https://www.superduperinc.com/products/view.aspx?pid=TPX37701&s=the-processing-program-level-1-&lid=41E46A95#.XntItRT95Fs  I did not use this one, but I think look at the samples and see if it would be good to start here first.

https://www.superduperinc.com/products/view.aspx?pid=TPX27704&s=the-grammar-processing-program&lid=41E46A95#.XntI4BT95Fs  this is the one we used.

Ok, what if that's TOO HARD? What if that's too many steps? You could hit your language targets and much it much more streamlined if you did say a sequence of physical objects, no story. (blue bear, yellow bear, red bear) He could match the bears to a sequence of color dots on a page. Better yet, use colored squares and colored objects. Now we're leading him into the Barton skills that he failed on the screener, kwim? So red dot, yellow dot, blue dot on page. He matches them and finds red/yellow/blue bears and places them on then says (pick your sentence with I have, see my, whatever).

That's all in the weeds, sigh.

11 hours ago, Cake and Pi said:

I am a slow but fluent reader.

https://www.dropbox.com/sh/4rcl6f0uo70esmv/AAAaGAHw3_YTMEQZSw_WI-t_a?dl=0  This is a link to my dropbox of RAN/RAS files. You can print and put in page protectors. If he can say the color names of the dots, you're golden. You can make your own with anything you want. Start very slowly. On the CTOPP (test of phonological processing psychs use) they run the RAN/RAS multiple ways. With my ds, we worked on it one way (with color names) so that he scored poorly on some of the others. So he was still flagging, but he got the benefit. What is your ds' processing speed from his IQ testing? Processing speed helps there too obviously. But anyways, high RAN/RAS is strongly correlated with strong readers. And you'll see reading tutors online saying don't bother, blah blah, but to me that's silly. It's free to work on, motivating, and probably makes a difference. If you're looking at things you can focus on for 1-3 months that will make a major difference when he goes back to school, that could be one. And you'd be surprised how often therapists are NOT working on it.

A thread we had in 2014 on it 

 

On March 24, 2020 at 1:35 AM, Cake and Pi said:

No, he functions like a gifted person with an ID, lol. His adaptive scores are in the 60s. He requires an immense amount of care at home, and in many ways just seems like a child several years younger than he is.

The way the behaviorist put it with my ds is that he functions not more than 3 years behind. I just plan on it, kwim? So last night I gave him adult Great Courses, but when I pick something I'm going to think about my goal and find a -3 way to do it. Or expectations for chores, -3. Pottying, -3. So yeah, he was wetting prolifically at 7. Integrating reflexes helped a bit. It was crazy. He wet at least occassionally daytime through age 9. Around then I was able to stop taking extra pants on our day trips. I bought a gel seat cover for his spot in the car after he stopped using a booster, because I needed to protect the car seat. He's *mostly* dry now, but under very freak circumstances (extreme anxiety, sickness) it can still be there. And at night he's still in nightpants.

Working on interoception can help. But yeah, the -3 thing. It sounds like your other kids weren't that way. What is their support level for their ASD? Are they all ASD1? Just wondering. Just saying everything you're saying is normal for a much higher support child and a shock when your other kids don't need that kind of support.

Are you using picture supports and language to support sequencing of adaptive living skills? So there will be picture sequences for washing hands, for bathing, for cooking, etc. I made pictures for the steps to put away his laundry, pack his swim bag, etc. 

On March 24, 2020 at 1:35 AM, Cake and Pi said:

I'm not too happy with what they're doing in speech this year at school. Last year he had an hour of speech and 30 minutes of sped 4 days a week. This year they switched it to 30 min of speech and an hour of sped 4x per week. Previously speech was working on language. This year they seem to have changed gears to focus on his articulation, which, admittedly, is in need of some help, but what I *want* them to work on is language, especially receptive.

The problem is that DS 6 is remarkably good at having conversations now. He's made tremendous progress with his expressive language in the last year. You can now talk to him and he says completely appropriate things back, but if you keep this up long enough, at some point he says something so completely off the wall that you realize he has no idea what the heck your talking about. So the folks at his school like to try and say that he's doing so well and has met his language goals, but I think they're missing some pretty significant issues. Private SLP and neuropsych both noticed it and pointed out that he's still using scripted language and echolalia, but he does it so fluidly now that it's hard to get the school to agree with me. (We've only been doing private speech during the summers.)

Oh my. I missed this the first time. So you already figured out that $$$$$ DRIVES EVERYTHING. The school is not going to do the hours it would take. The private SLPs don't own the materials and don't want to spend the money. So again, for getting hours of service for language, the A diagnosis could open those doors. Like if you're just crass, if you're just fighting for the intervention, that's a way. And people do this, kwim? They fight to get an intervention that opens doors. Right now they're saying that he has low IQ, it's ok to have low expectations, and they've done what the law demands. And they HAVE! 

That's what happened to us and why I ended up doing the language work myself. I have our state autism scholarship, but because my ds had aged out of when they expect to do language, even in autism circles, I couldn't get anyone to do a VBMAPP on him or proceed forward. They had no clue what to do. And I was like fine, I studied linguistics in college, I'm not an idiot, I can do this. And I didn't have the hindrance they had of some therapy office supervisor saying don't buy stuff. 

See you've got to remember, much of the ps therapy and clinic therapy is going to be one task set up to use with every client that week. Everybody with the same handwriting worksheet. Everybody doing the same spy/coding activity you developed. Everybody doing free downloads from TPT. Everybody doing the same picture book. And they're going to be witty about it and they're going to customize. But there's going to be a lot of that naturalistic, immersion, we used a book and hit our targets kind of stuff. 

So contrast that with "this month we're working on attributes and every day we're working for 2 hours on them using a range of materials beginning with worksheets and building into narratives and we're bringing attributes into every conversation and manding with attributes and pausing movies to talk about attributes and bringing attributes into our picture book read aloud and into our dinner and and..." Kwim? That's a really different level. When you work like that, you're bringing in more targeted, intense work than they could get done in an entire year, kwim? And me, I don't give a rip who does it or how it happens and I doubt you do either. It's just that for my ds, those hours needed to happen and someone had to do them. I couldn't get enough workers and coordination to make it happen under the ABA/autism label. Your ds is younger, so you still might be able to. My ds was a bit older, and they all just wanted to move on.

See that's the thing about IEP goals. They keep going up and they can't stop and say wait, you missed the foundation, kwim? That's why the thing to focus on is foundations. Reflexes, RAN/RAS, your through age 5-6 VBMAPP skills. Cuz you're right. Once his language is above their cutoff (by scripting, by whatever), they're gonna shove him on through. 

On March 24, 2020 at 1:35 AM, Cake and Pi said:

Articulation example: "My wook why an jus take tuff off?" = "My work why and just take stuff off?" -- That was him asking me how the thing he glued to his paper fell off.

I don't know, I'm just thinking here. My ds has apraxia, so I always read things and go ok WHY did he not get the articulation? You've got mild hearing loss, phonological processing problems, and a significant developmental delay. 

You know, given the amount of busyness you have, have you thought about phonological processing software? Does your ps have something that they could give you online access to? You could write the SLP and ask. 

Have you looked at LIPS and FIS to see which you might want to do? I think LIPS might be your preferred tool, but FIS is open and go. I guess just see what calls to you, what you can find a deal on. For my ds, improving discrimination did help speech some. I'm not saying it will cure it, but given your mix it might help *some*. It wouldn't hurt. Since it's easy for an SLP to work on artic and tedious to work on discrimination, I would be working on discrimination.

-alphabet sorts with objects/pictures

-minimal difference pairs worksheets (you can google and find these)

-Vowel Owls game for sorting vowels

-Attention Good Listeners or something similar if you can find it (this is the BOMB)

-LIPS/FIS

-software for auditory processing

And when he does something like that, using a more complex construction that is incoherent, try breaking it down into two sentences at the target length. "This was my work. My pictures fell off! Why did they fall?" If you have time to look through that DLD posters page I linked you to, they show recasting as a technique for language intervention. You have such a strong connection that it sounds like you can do this.

On March 23, 2020 at 6:35 PM, Cake and Pi said:

I'm trying to set up a rotation of the older kids "mentoring" him for chunks of the day (reading to/playing with him nearby)

They might be able to do the RAN/RAS pages with him. they could play Simon Says to work on working memory. The trick with that will be to have the dc *repeat* the command he's given. So if big sib says "clap 1, hop 2" then little dc repeats "clap 1, hop 2" and then does it. They can play other games with him like Memory, Trouble, etc. It will be interesting to hear how the mentoring works out and if they enjoy it. It's a wonderful opportunity to have.

I don't know. I was just trying to think about other ways to approach this. But it seems like, no matter what you call the cause or complicating factors, he still needs some work that the system is not likely to make happen. And you won't know the walls till you've tried.

[Cake and Pi]

3 hours ago, PeterPan said:

Ok, here's the thing. I'm going to stop and ask *why* he got them wrong.

He could repeat all of the words correctly, but when the word had 3-4 syllables, he still only clapped once or twice. DH didn't even ask him how many claps were in the words, just to clap out the words like he did.

3 hours ago, PeterPan said:

And if that doesn't make sense to you, go look at your Bob Books and really think about the syntactical structures. Would he understand those?

Yes! Those super short sentences are exactly the kind he does well with. 

3 hours ago, PeterPan said:

https://www.brmtusa.com/what-are-reflexes  Here's a link to get you started.

Thank you!

3 hours ago, PeterPan said:

His last ADOS was at 3.5

Yes, and I will probably put him back on the 2 year wait list to get reevaluated around the same time they want to redo his IQ, but at this point it doesn't matter much. He has a developmental disability dx and qualifies with our community centered board. He's got tons of minutes in his IEP, and we haven't had any issues getting insurance coverage for private therapies. I don't know about ABA for him... I guess I've only seen it implemented with DS 8 and DS 12, who present quite differently from DS 6.

He looks ASD from the restricted/repetitive side of things, he's got the sensory issues, and overall communication struggles. However, he is very socially related. He's got that joint attention. He points to show interest, follows points, checks in with adults, is appropriately affectionate, is socially motivated and interested in what adults and other children do. He is very expressive with clear (intense!) emotions and appropriate affect. He has these delays that look like ASD at first, but then something clicks and it stops looking so ASD. Like, he didn't imitate at all, and then suddenly around his 2nd birthday he imitated everything (and he still does!). He had basically no imaginative play until maybe 4.5yo, and then suddenly became this super imaginative little boy. He does pretend play and roll-playing type play in ways that DS 12 and DS 8 have never done. He has a rich make-believe world like DS 10's. His social skills are delayed, but they do seem to develop right in line with his receptive language.

I mean, he's constantly changing and we may well end up with another ASD dx by the time he's 10-12yo, but for now I think I agree with the doctors who have evaluated him. He just doesn't meet ASD diagnostic criteria. That's how they came up with "other specified neurodevelopmental disorder" as his main dx. He's clearly got a neurodevelopmental disorder like ASD, it just doesn't seem to be ASD right now.

And the school doesn't care what his diagnosis is. I've spent years (like, literally since he was 5mo) fighting for services. He used to get speech, OT, PT, and sped. Now he's down to speech and sped with almost negligible PT minutes, but his overall minutes are higher than when he had more kinds of school-based therapy. Their argument against OT and PT is that his lagging physical skills do not impact his ability to access the classroom, curriculum, or playground. If they had any stairs, the story would be different, but there are none. Much of the OT and PT we've done privately has been targeting skills like chewing, sensory integration, strengthening his core to help with pelvic floor control, and balance. These aren't things that impact learning at school, so the school feels he doesn't need them from them.

The thing is that he is very well behaved at school. He is extremely good at blending in a group. He's quiet. He follows along with the other kids. They sit down, he sits down. They line up, he lines up. He doesn't cause disruptions. He just sits there quietly doing nothing while everyone else works on the assignment until the classroom aid comes over and does the work with him or he gets pulled for interventions. Last year, his first time through kindergarten, he came home every week with empty worksheet after empty worksheet that someone else had written his name on. They sent home his math workbook at the end of the year, and it was so empty that we were able to send it back to school with him this year and not have to pay the fee for a new one. Honestly, it was heartbreaking to observe.

3 hours ago, PeterPan said:

But I think it's intriguing also to ask what HE wants. What interests him? What captures his attention or seems like something he wants to learn? What is he motivated by?

He likes to cut paper in to tiny shreds. He could do that for hours as long as I'm nearby. He likes to glue things together, draw, and color. Recently he's been into tracing simple stencils. He also likes play dough. He likes dot-to-dots, but he needs support to do them correctly. He has this Automoblox wooden car thing that he takes apart and puts together over and over and over and over. He loves Baby Shark, stuffed animals, bunnies, and rainbows. He loves to help cook or really help with anything the adults are working on. Big brothers are origami masters, so he also likes to fold paper up even if it doesn't look like anything when he's done. Actually, he enjoys playing with his brothers in general and tries to do most of the things they do. He's also very affectionate and loves to cuddle. 

3 hours ago, PeterPan said:

Here's an example of makes life good.

https://www.amazon.com/gp/product/B00NG4OPRG/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1  

He LOVES these things.

2 hours ago, PeterPan said:

Ok, this is a total, total aside, but does he listen to audiobooks?

No, he hates them. We listen to audiobooks a bunch in the car driving to and from school, therapies, and doctor appointments (all those specialists DS 6 sees, plus occasional weight checks, etc. since he's still barely 32 lbs), mostly because the older kids like them and I got so tired of hearing the same songs on the radio. But, no, he really, really, really dislikes this practice. Sometimes he cries and screams until I turn the audiobook off, in fact. And then, of course, I listen to the other three complain for the rest of the drive. 

3 hours ago, PeterPan said:

What are things you could do that would improve his quality of life? You've said he spends a lot of time humming. Is he stressed? Would self-awareness and self-advocacy help? Leisure skills? Play skills? I don't know, I think I'd add one more thing to the list, something that makes his life good or scratches his itch. Or both if you have enough time, lol.

He probably has anxiety. Developmental peds thinks an underlying anxiety problem is probably the cause of most of his restrictive, repetitive behaviors and trouble with transitions. I don't know what would lessen that. All three of the older boys and I have diagnosed anxiety. It runs in the family. Possibly some medication eventually. I think bringing him home officially and ditching PS would improve his quality of life, but only if I can pull it off while still meeting everyone's needs, which feels overwhelmingly impossible from where I'm sitting right now.

3 hours ago, PeterPan said:

do you feel like you have a disability of number sense as well? Some people with dyslexa also have dyscalculia (number sense disability) but not all.

This is an interesting question and it has a complicated answer. No? I don't think so? But I had a hard time learning math until it was presented in a way that made sense to me.  

Really, my math-learning pattern mirrored what happened in reading. I went from not reading at the beginning of 4th grade to reading and understanding 1,000+ page adult novels by the summer between 5th and 6th. In 6th grade I had zero understanding of fractions, could only add or subtract by counting on or off, couldn't multiply or divide, had a super funky mental number line, and was failing math (except for geometric stuff! that always made sense). In 7th grade we got a new teacher and she implemented new curriculum with blocks and other manipulatives. Suddenly, numbers became quantities and math made sense! By 8th grade I was being given extension materials in math and granted independent studies because I'd surpassed the highest level group in the school, and by 10th grade I was placed in calculus. However, since there wasn't anything at all after calculus, I putzed around for most of high school. 

That said, I had a serious lack of mental math strategies.  I got all the way through engineering college without ever learning the multiplication/division facts (I'm a calculator ninja!). I learned to add 2-digit numbers mentally from RightStart back while I was teaching DS 12. Much of what I accomplished in my own educational career was intuitive. What I really needed was some guidance. I've been learning alongside my big kids all along.

1 hour ago, PeterPan said:

This is for @Cake and Pi but remember working memory is the scratch pad of the brain and essential for long term learning. So when we're saying can we get addition facts learned, can we get multiplication learned, we're partly saying can we get it from short term to long term. And that requires that working memory. So because it's really low, you may end up needing a lot more repetition. And just to meet him where he is, it may need to be repetition across a variety of settings. Like for my ds, he'd be able to do 2+5 in a flashcard app and then not for a worksheet. Or he'd know it in the worksheet and with dots and in the app and then not know it all over again when we pulled out a hundreds chart.

Yes, I already see this issue with not transfering skills now. He can read his name if it's written with a capitol first letter and the rest lower case. If you show him his name in all caps, he has no idea what it says. He can show 1-5 and 10 on his fingers without fail, sometimes 6 too, but with anything besides his fingers he has to count if it's beyond 3.

1 hour ago, PeterPan said:

If he still is showing ADHD after those reflexes are integrated, you could consider meds for the ADHD.

Perhaps, eventually. My kids all have seriously complex ADHD and every one of them has required a lot of trial and error finding meds that work. They all see a pediatric psychiatrist because they've proven so complicated. My kids seem to get all the rare side effects. We spent about a year and a half trying to figure out what works for DS 10, and DS 8 is still trialing different things now with nothing really helping more than it hurts so far. We shall see, though.

1 hour ago, Terabith said:

Yes, it laid such an amazing foundation even with adding that *I* had all these light bulbs going off.  It was so careful and systematic and incredible, and then we get to multiplication and it was just, well, now just memorize it.  There was no thinking.  It felt completely half assed, like she’d started this AMAZING program and then just totally lost steam.  I was legitimately disgusted.  

 I wonder if my copy of RS 1st edition is somehow different that what you guys used. I don't remember it being at all about memorization at all. In fact, I *loved* the way multiplication was handled in RS level C. It was beautiful, really...

1 hour ago, square_25 said:

What did it do for multiplication? 

In our copy, at least, they approached multiplication from multiple angles like they were separate topics and then tied them all together in this nice, neat package. They did skip counting (lots of skip counting -- possibly overkill on the skip counting) and looking at patterns in the skip counting sequences, arrays of beads on the abacus and of 1" tiles, area, and repeated addition each like they were separate things. Then they tied them all together. I remember my DS 12's big ah-ha moment when he realized they were all different ways to see and do multiplication. They did some other interesting things like pointing out how you could cover a standard multiplication table with tiles and the number under the bottom right tile matched the total number of tiles in the array (that was in 2nd edition, though, I believe). They had this brilliant exercise where the kid had to lay out the skip counting number cards in rows: ones, then twos, and so on. Then when it was time to clean up, they asked the kid to pick up the cards in columns instead of rows to show the communicative property in a creative way. That was another big ah-ha moment.

My older kids, especially DS 8, all loved finding patterns in the skip counting sequences. RightStart has you write the sequences in specific ways and then notice patterns. Like, every other number in the 2s skip counting sequence is the 4s, if you arrange the numbers of the 3s sequence in rows of 3 you add 9 every time you go straight down from a row to the next, with the multiples of 9 the 10s digit increased by 1 and the ones digit decreases by 1 each time, that kind of thing, except it went way deeper and DS 8 took it far beyond even that.

RS taught really solid multiplication strategies. From RS we *all* learned that the 4s are double the 2s, so you can double and double again to get a multiple of 4. The 8s are double the 4s, so you can double-double-double to get the 8s. The 5s are half the 10s. The 6s are one more grouping than the 5s (super intuitively presented distributive property: 6xa = 5xa + 1xa). The 9s are one less grouping than the 10s (again, using the distributive property without ever calling it that: 9xb = 10xb - 1xb). RS taught "check numbers", which is just the remainder when a number is divided by 9 taught from a pattern perspective. Really, everything I know about multiplication, I learned from RightStart as an adult. 

[Terabith]

Oh my goodness, it does REALLY sound like anxiety is a significant issue.   And....I know it sounds crazy, but I want to encourage you to really think about medication for anxiety.  My youngest was anxious from birth.  She was incredibly precocious, spoke in sentences at 11 months, knew all her letters and sounds by 18 months, but when she was two, we moved across the country and she just stopped.  She stopped learning, stopped interacting, stopped developing.  Her physical growth slowed way down.  She pretty much did not gain a single new developmental skill between ages 2 and 5.  We put her on an SSRI right after her fifth birthday.  The difference was night and day.  And it wasn't a six week ramp up.  Within two days, she was talking at preschool.  She started learning.  She started growing physically.  She looked REALLY autistic before the meds but much, much, MUCH less so after.  (She still wound up with an ASD diagnosis by 11, but it's really subtle.)  The difference in the quality of life for the entire family was dramatic.  I really wish we had medicated at three.  She really had an acquired developmental delay from those three lost years, and it took a long time to really recover.  She never tested that way because she had been so incredibly precocious at 2, but over the years, those percentiles dropped until she started learning again at five.  

I was really hesitant to medicate such a young child, but it really was necessary and the difference it made was profound.  I would never have guessed that so many of her issues were tied to the anxiety, but they were - including growing physically.  We knew she was anxious, but we didn't realize how global the effect was until it was somewhat ameliorated, you know?  

[PeterPan]

2 hours ago, Cake and Pi said:

However, he is very socially related. He's got that joint attention.

He has a mom who is very clued in on ASD issues who doubtless has been hitting those things just by habit. Once you've parented one, you don't turn that off. My ds had that with some of his evals, that people weren't realizing just how much time he had spent working with adults. He really had the adult gig down. And he has siblings, so that is doing good stuff for him too! The ADOS modules mature as the kids mature, and there comes a point where the psychs diagnose anyway and use their judgment over the ADOS. 

That two year wait sounds horrible, wow. Around here it's 6-12 months for the children's hospital and shorter for private.

2 hours ago, Cake and Pi said:

He is extremely good at blending in a group. He's quiet.

Could I just say that when you pair that with a serious language delay and so much scripting and echolalia that that *isn't* a good thing? That could be more the language difficulties than personality. Might be something to talk with his IEP team about, how they can structure him next fall so that's not happening.

2 hours ago, Cake and Pi said:

He does pretend play and roll-playing type play in ways that DS 12 and DS 8 have never done.

Technically it's not just whether he does the pretend play, etc. but what the characteristics are. But you know, seeing good stuff is what you want! But it can vary, yes. I mean, dude, how many people on the spectrum are doing DnD and cosplay, kwim?

2 hours ago, Cake and Pi said:

Their argument against OT and PT is that his lagging physical skills do not impact his ability to access

Yup, that's how it always is. 

2 hours ago, Cake and Pi said:

I mean, he's constantly changing

And that's good! I remember someone who used to post here years ago, and she'd go so frustrated because NO ONE had a dc as unusual as hers. That can happen when a dc is unique even among unique kids. With my ds, I identify with *some* posters here. Like I'll have moms write me and be like hey your ds is like my dc, we should gab, we should get together. It's not super common, because he's a little less common. But he's not like needle in a haystack unique. Yours sounds needle in a haystack unique. Just saying.

2 hours ago, Cake and Pi said:

Last year, his first time through kindergarten, he came home every week with empty worksheet after empty worksheet that someone else had written his name on. They sent home his math workbook at the end of the year, and it was so empty that we were able to send it back to school with him this year and not have to pay the fee for a new one. Honestly, it was heartbreaking to observe.

Wow. That is sad and hard to watch. With my ds, he seems to run a year behind on academics. Like it would be really laudable to say keep him on grade level, but I balance other things (life skills, mental health, him learning to self-advocate, time for social, etc.) so that's not what happens. And it has been pretty consistent. I also think we'll probably grade adjust a bit so he gets some extra time on the other end too. His IEP technically still says grade level, but I don't want him graduating and losing access to services before he's ready. So we'll see. 

Fwiw, my ds' IEP has almost all academics with pullouts and intervention specialist hours. Maybe their move to add SLDs is a move toward that, dunno. It's kind of a funny thing because maybe as parents we have one set of goals and the school has different goals. But sometimes they're are reasons why they think it's the best way.

2 hours ago, Cake and Pi said:

 He likes to glue things together, draw, and color. Recently he's been into tracing simple stencils. He also likes play dough. He likes dot-to-dots, but he needs support to do them correctly

That gives you a lot to work with! Kumon has cute workbooks                                             Let's Cut Paper! (Kumon First Steps Workbooks)                                       

2 hours ago, Cake and Pi said:

He has this Automoblox wooden car thing that he takes apart and puts together over and over and over and over.

 

2 hours ago, Cake and Pi said:

He likes to cut paper in to tiny shreds. He could do that for hours as long as I'm nearby. 

Are these activities calming to him? Maybe you can follow them to find other things that are like that, things with parts so he can take them apart and put them back together, things he can do repetitively. Or is he doing them so much that he's sort of falling into it and not coming out to talk, to pause, to take a break, to be with people? With my ds, he would fall into the aut even with audiobooks. I made it a practice (and still do!) to stop every 20 minutes and talk with him and reconnect. 

2 hours ago, Cake and Pi said:

No, he hates them. We listen to audiobooks

You could see if your library has audiobooks more at his comprehension level. I know BARD does. You'd never want to pay for them on audible or whatever, but they do exist. Picture books, 6 minute books, etc. Or try apps for books, so he gets the visual with the audio. You could put headphones on him with his things that he can understand on a tablet so the other kids get their audiobooks. That's not cool if he's learning that screaming gets him what he wants. Now asking nicely, using language he has been taught (hurts my ears, it bugs me, too loud, whatever), language is fine. But screaming is not fine. When my ds was younger, we had a lot of stop the car, can't go forward with that. But yeah, whatever, you already know that, lol.

Our library has overdrive and can do audiobooks and ebooks. So if you check out an ebook through them, it goes through amazon (weird, I know) and for the duration of the loan it's as good as owning, meaning amazon offers you the other component. So then you have something with a picture book and professional recording where he can just tap to go to the next page.                                             Bats at the Beach (A Bat Book)                                       We did this book around that age and it was a lot of fun. Ok, I'm listening to the file and the language might be too complex. But it's just the idea.

Oh I REMEMBER!!! I had started that whole long "what if we approached it from all the other angles" thing because I had been thinking about how you could use MUSIC to connect with him! There's a lot about using music to connect with language through other parts of the brain. There's music for apraxia, and it has a slower pace and simplified vocabulary and syntax that could really work for this. Kids Express Train and Time to Sing were the ones popular when my ds started. 

 

[PeterPan]

3 hours ago, Cake and Pi said:

He probably has anxiety. Developmental peds thinks an underlying anxiety problem is probably the cause of most of his restrictive, repetitive behaviors and trouble with transitions. I don't know what would lessen that. All three of the older boys and I have diagnosed anxiety. It runs in the family. Possibly some medication eventually. I think bringing him home officially and ditching PS would improve his quality of life, but only if I can pull it off while still meeting everyone's needs, which feels overwhelmingly impossible from where I'm sitting right now.

So we ran genetics and found some easy explanations (TPH2 defect, blah blah). Sure treat it, either with supplements or meds. That's kind of interesting to say the stims and repetitive behaviors and difficulties with transitions are anxiety. They are, sure. And anxiety makes them worse, sure. But is it possible he also has those when he's NOT blazing high on his anxiety? My ds has those all the time to some degree, which is why he gets an ASD label. Sometimes they're really mild and you're like what were we worried about, lol. But rev up that anxiety, and they're gonna go off the charts. So teasing those apart is kind of, well I guess it's more helpful to just say the behaviors occur and that if he's anxious while they're occurring he should have supports. Someone can stim to calm. So do you want him to stop cutting paper into shreds and stop assembling and disassembling those car blocks?? They're clearly intertwined with who he is and they sound like something that would continue to occur.

In our state anxiety is a tier 3 diagnosis, so they want to go through that FIRST before they get to ASD. It's just how they roll. ASD is a tier 5, so they want to use anxiety supports and see what remains after they do anxiety supports. And the funny thing for us, what I hadn't anticipated, was that ds actually looked MORE autistic after he got supports for his anxiety. The autism was actually MORE apparent. Go figure.

3 hours ago, Cake and Pi said:

I think bringing him home officially and ditching PS would improve his quality of life,

That sounds like a lot of guilt on your part. He's got an IEP and is in with people who care about him. You're saying he's well behaved there. What indication do you have that anxiety is a factor at school? Are things happening there? Or does he hold it together and then come home and melt down?

You know what is amazing. I think you've done SUCH A GOOD JOB and hit so many bases that you're literally like what's left, kwim? You've done every therapy, he has access to social, he's surrounded by love. He gets worked with on life skills, gets attention. You may literally just flat be right that you've DONE it. I wouldn't feel guilty about that, kwim? You also can't feel guilty about not being able to fix the unfixable. 

3 hours ago, Cake and Pi said:

Really, my math-learning pattern mirrored what happened in reading.

Oh boy. Well I guess you'll just see how it goes. At least you know you have options. 

3 hours ago, Cake and Pi said:

He can read his name if it's written with a capitol first letter and the rest lower case. If you show him his name in all caps, he has no idea what it says.

So you may need to play some games with upper and lower case so he begins to memorize them both and make the connection. Do you have sandpaper letters for both? 

3 hours ago, Cake and Pi said:

Yes, I already see this issue with not transfering skills now.

So the magic number for generalizing is 6. Somebody here said it and our behaviorist said it too. Six different settings, six different people/scenarios/situations. Whatever the thing is, keep hitting it more ways. So matching upper and lower case with sandpaper then with environmental print then with two different alphabet puzzles then with... kwim? 

3 hours ago, Cake and Pi said:

My kids seem to get all the rare side effects.

This is a rant, but it totally irks me that the psychiatric field is SO FAR behind on using genetics to predict these reactions, just saying. 

 

Edited March 25, 2020 by PeterPan

[PeterPan]

38 minutes ago, Terabith said:

it does REALLY sound like anxiety is a significant issue. 

I missed it, what behaviors are impacting his ability to access his education or have a joyful life that are due to anxiety? I'm not sure that's cool to give someone meds simply because they stim or have repetitive behaviors. Not disagreeing on treating anxiety. Just saying I missed what is going on here that screams put on anxiety meds.

Might be safer to start by working on interoception and his ability to self-advocate. Daily body scans using the nonverbal/simplified boards in Kelly Mahler's materials.

https://www.kelly-mahler.com/product/the-interoception-curriculum-bundle/

Edited March 25, 2020 by PeterPan

[PeterPan]

Food for thought. When he disassembles the autoblox cars and reassembles them, does he ever use them AS A CAR? Like does he do whatever boys typically do with cars? Or is he really about the parts? 

My ds was like that with playmobil. He'd set up this really complicated play, but it usually involved taking apart anything that was supposed to be something else and using the parts to make something totally different. He never actually played with the thing as it was intended. And his creativity is REALLY AMAZING! Like it's astonishing to watch, it's great. But it was also very obvious that he was not engaging in typical play. And when it looked like he was engaging in more typical play, he was *scripting* following things he had learned in speech.

See that's the thing. We expect narrative language to show up in play too. And the narrative language development and the cognitive, the cognition of the concepts, go hand in hand. Unfortunately narrative language development DRIVES higher level thinking. Meaning when our kids are delayed for language, they're also behind going forward in these higher thinking processes. So the language and the thought process that would show up in age typically play cannot be there, because the language and development is not there.

Or to put it another way, when we teach language we are driving cognitive development. So right now, I'm teaching my ds ethics. You can laugh, but it's for real. I read to him from the Old Testament law and we discuss all these conditions. What if you have an enemy and that enemy's ox wanders onto your land? What about finder's keepers? Does that mean you can just keep it? Well to discuss these requires more complex syntax, and the development of the THOUGHT and the SYNTAX go hand in hand.

So if you want to play in a targeted way with him, you can use his language targets in his play. The sentence length targets we were talking about plus the language goals (attributes, functions, whatever) come over to his play as narrative language. 

[Lecka]

I have known several kids make major progress after starting anxiety medication.  For a couple they did everything at the same time as far as — making changes.  But also a couple where they were doing other things already and then added medication, and still saw major improvement.  
 

Age 5/6 is an age I have seen several kids start and it has worked well.  
 

Not sure if this has been mentioned, but one issue is if kids start to develop a social delay due to limiting their social interaction due to anxiety.  That can be something that is accumulating through pre-school years and early school and then that can be an extra issue, and then that can get into negative cycles with social anxiety and more limited social development, etc etc.  

It’s a reason people due go ahead with medication even if they think their kids are young and don’t really “want” to do it.  

[Terabith]

3 hours ago, PeterPan said:

I missed it, what behaviors are impacting his ability to access his education or have a joyful life that are due to anxiety? I'm not sure that's cool to give someone meds simply because they stim or have repetitive behaviors. Not disagreeing on treating anxiety. Just saying I missed what is going on here that screams put on anxiety meds.

Might be safer to start by working on interoception and his ability to self-advocate. Daily body scans using the nonverbal/simplified boards in Kelly Mahler's materials.

https://www.kelly-mahler.com/product/the-interoception-curriculum-bundle/

I'm just thinking, you have a kid with restricted, repetitive behaviors, a strong family history of anxiety, developmental delays, and physically struggles with growth (and a pediatrician that wonders if anxiety is underlying a lot of the issues)....  These don't make it so he can't have a joyful life.  But, they're really unusual presentations of anxiety that most of the time people don't associate with anxiety.  And especially with a family history.  I get being cautious with meds, but these are the EXACT issues Cat had that responded overnight to meds.  We would not have thought to try meds except for the fact that she was having panic attacks if she wasn't in physical contact with me.  But when we did, not only did the panic attacks stop, but so did the repetitive, restricted interests, the sensory stuff calmed down, she started growing physically and gaining weight, and the learning, particularly her memory, improved overnight by like 30 points.  She still has significantly impacted working memory, but it's in the realm of functional.  We didn't realize how much it was impacting her, because we didn't associate these issues with anxiety.  It's to the extent that I wonder, even now, if we overtreated the anxiety (upped her meds or whatever), if the autism symptoms that remain would disappear.  They're THAT tied to anxiety.  She's functional 95% of the time and happy and stuff, so we don't, but there are all these weird things that are anxiety but don't look at all like it.  And we were unable to do any CBT or interoception or even OT work until she was medicated.  I just think it's easy to not realize how impacting anxiety is until it's gone.  

Now, it's totally possible to have those symptoms and they're just ASD or something else entirely.  It was the constellation of weird, unusual things that were the same weird, unusual characteristics we saw, along with the strong family history (which again, we have) that made me think it was worth a two month med trial.  

[Lecka]

It’s really common for ASD to also have anxiety and have a good response to anxiety medication.