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


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4 hours ago, PeterPan said:

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.

I didn't really explain that well because I was trying to be concise. DS 6 can scream nonstop for an hour or two, and he gets where even giving him what he wants doesn't get him to stop. Sometimes these can come out of the blue, as when he screams for an hour that he wants a banana and there are. no. flippin'. bananas. in the house. Nothing I say or do will get him to calm down. Other times I can spider-sense a meltdown coming on and I will respond to his initial bit of screaming (that isn't yet hysterical) with structured "outs" so that he can communicate in *some* way to get what he's needing and the rest of us don't have to be stuck in the car while he screams bloody murder for the entire trip (and possibly for some time after we get to our destination). This is something I learned in DS 8's ABA, where they give him other ways to ask for a break besides just "I need a break" when he starts to get worked up and is past the point of being able to use complete sentences. DS 8 can reduce to single words, "break" or "done" or touch a break card, and so I have just modeled what I do with DS 6 after that but with expectations more appropriate for where he's at. So, no, I don't always require asking nicely, but when I don't it's intentional and part of my master deescalation plan, lol.

Also, we normally (sans COVID-19) run such a tight schedule that there just isn't time to pull over basically ever. We have one thing after another after another scheduled.

3 hours ago, PeterPan said:

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?

Well, after 3.8 years of public school, he is still crying most days at drop-offs. We're at the point now where he has a designated morning transition person who meets us at the front doors (parents are not allowed past the main office) to distract him and entice him into letting go of me. When this works, he gets to blow some bubbles or something and gets a star on his chart to work toward a bigger prize. When it doesn't work, which is usually about 3 days a week, I have to carry him kicking and screaming into the school, pry his little arms off of my neck, and pass him to the clinic aid, his transition person, so she can gently restrain him while dash out of the building. It sucks, and we've been doing it near daily for almost 4 years!

When he first wakes up in the mornings he sometimes asks if he has to go to school and will cry and ask not to go if I say yes. He says hes scared, but I've never gotten him to say anymore than that. It's just, "I'm tared." He can't tell me what he's scared of. He's never told me about anything bad happening. Granted, he doesn't really have the skills to tell a story about something real that happened earlier in his day yet (though there was one time when he talked at length about the time our cat died... a year before), so he wouldn't necessarily be able to verbalize a bad experience. He does say that he likes his teacher and his friends -- and this kid is beloved by half the school. Everyone knows him by name. Every day when I go to pick him up there are at least 3-5 kids calling out to him, waving, telling their parents, "That's my friend M!" It's astonishing how well loved he is at school.

They assure me that he's completely happy within a few minutes of my leaving, that he has a great time at school all day long, and that he has lots of friends. I'm promised that they've seen no indication of other children mistreating him, and they say that he seems to really like being at school. 

Like I said, anxiety medication is probably in the cards for him at some point, most likely sooner rather than later, once we get through the 6-9 month wait list for an intake eval and then another 3-6 for a medication eval. I'm not interested in taking him anywhere but our big, regional children's hospital for financial and quality-of-care reasons.

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6 hours ago, Terabith said:

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.  

Thank you very much for sharing your DD's experience.

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Have to go back a page and finish catching up!

18 hours ago, PeterPan said:

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? 

I've never noticed... I'll have to pay more attention and find out.

18 hours ago, PeterPan said:

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.

They're both ASD-1 and exceptionally/profoundly gifted. It makes for an interesting spread in abilities.

DS 12 can pass for NT and wasn't diagnosed until just a year ago. The road to diagnosis for him was an epic saga, seriously. I could write a book about it. We'd been doing ASD-specific interventions off and on since toddlerhood because they worked, but under different diagnoses. I'm pretty sure you and I had an exchange about that several years ago (At least I think it was you, maybe, possibly, probably, under a different SN?) where I mentioned that we did ABA for my non-ASD kid and you were were questioning why/how that would work... well, it worked because he actually did have ASD, lol.

DS 8 has adaptive scores low enough to qualify as developmentally disabled, but he's also undeniably brilliant. His self-care skills totally hit the -3 rule, social communication is more like -5, but he makes up for it by being able to follow directions. So even though he can't brush his teeth independently, if I talk him through the process (every single time) he can do all the brushing himself with me standing there telling him how to do it. DS 6, on the other hand, needs me to actually brush for him, and then there's a high probability that he won't cooperate and it'll turn into a 2-person job or not get done at all. Same thing for getting dressed. DS 8 might try to leave for therapy in shoes and a pair of underwear, but if I tell him to put on pants and a shirt and hover nearby, he'll do it. Meanwhile, DS 6 will strip down naked and then when I try to get him redressed he'll turn into a freaking octopus and 20 minutes later I'll maybe have managed to get pants on him. So, yes, totally different levels of support needed, lol!

18 hours ago, PeterPan said:

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.

Very cool, thanks! They did a rapid naming test with DS 6 at his 6yo eval. He had a scaled score of 3 on the color one, which I think is 1st%. Processing speed was in the borderline range.

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4 hours ago, Cake and Pi said:

This is something I learned in DS 8's ABA

Do any of your other kids have the types of challenging behaviors this ds6 does, or does he require a much higher level of support? Asking for a break IS asking for something nicely btw. That's a great thing to be doing and yes, dropping language demands and going to pointing, etc. is great stuff. I'm just kinda feeling for you here. It's pretty obvious that he has much more significant support needs and we don't have to hear all the stories to know that, lol. That's why I keep thinking wow, if you had someone helping you with that, you'd get that next step up of answers and options. There may be tools you *didn't need* for your olders that you need for this dc. 

                                            Stuck Strategies: What to Do When Students Get STUCK                                      This book is very practical, highly recommend.

https://www.zonesofregulation.com/index.html to catch things before it turns into two hours. He may have subtle yellow zone signs you could catch.

https://www.kelly-mahler.com/what-is-interoception/  A lot of what you've described could respond well to interoception work. She has nonverbal pointing response cards in her printables. 

4 hours ago, Cake and Pi said:

They assure me that he's completely happy within a few minutes of my leaving, that he has a great time at school all day long, and that he has lots of friends.

It's very probable!

4 hours ago, Cake and Pi said:

It's just, "I'm tared."

It's also possible that's not the right emotion word. His language issues are so funky, just given what you've described I wouldn't, as a mom, assume that's even the right emotion word. Now if you do interoception work and he's saying that 6 months from now when you're converting body signals to emotions, that's different. 

I'm *not* saying use this with him right now, because it sounds like he needs interoception work first. But you can file this away for later. It might be a simple form that would work well for him https://ianbean.co.uk/Downloads/SelfRegulation.pdf

4 hours ago, Cake and Pi said:

Like I said, anxiety medication is probably in the cards for him at some point, most likely sooner rather than later, once we get through the 6-9 month wait list for an intake eval and then another 3-6 for a medication eval. I'm not interested in taking him anywhere but our big, regional children's hospital for financial and quality-of-care reasons.

I hope you're able to get in then! Our children's hospital is like that, with long waits. 

When you think through it that way, maybe what he's calling "scared" is in fact anxiety? Like he's really, really close on the words. That could be. So, fwiw, on my ds (who was frankly unlivable and unworkable before), we ran genetics, found some treatable defects, and his moods stabilized out with a mixture of vitamin D, 5HTP (time release), and niacin. I'm not saying take those, but it was surprising how innocuous the things were that he needed. I think maybe undermethylation is more common. It definitely gets really complicated really fast. Like I said, just an aside. 

The bummer for us was when ds transitioned from small enough to compel to big enough that he really had to be able to anticipate being able to handle it and anticipating feel calm.

2 hours ago, Cake and Pi said:

They're both ASD-1

Well I was going to say you needed more tools, but then I keep reading and it sounds like your ds8 will rebadge to ASD2. I mean, that's significant support. And I'm not knocking you here. It sounds astonishingly hard. Someone from the boards here met me, and she didn't use profanity or anything, but she was really shocked, like WOW WHAT YOU'RE PUTTING UP WITH. And it's not that I wanted to put up with it in my head, by I was really lobster in the pot. And when the mix is really challenging/dangerous (like a kid screaming for hours, like a kid going aggressive like mine was), it's very hard to bring in all the rational stuff and get everything done. We're also mortal, and we don't get everything done we'd aspire to.

So I'll just ask this as a question. What if you mentally rebadged your kids as ASD1-3? Like screw the system, and just go you know, my ds12 needs SUPPORT. My ds8 needs SIGNIFICANT SUPPORT. And my ds 6 needs... But you know I'm not sure your ds6 would go 3. But he's at least at the high end. There's sort of a range. There's like skin of your teeth, really high 1 going into 2. For your trivia, *language* issues are the discriminator there. So it could be that ds8 is high 1 by the numbers. They'll take a GARS or the ADOS and use that as a consideration, but also there's just the common sense. 

And I'm saying play with it mentally and ask what you would change if you thought of it that way? A kid who is needing supports to know the steps to brush his teeth one needs significant supports but two has it showing up more ways. So what tools would you ask for if it was like wow this isn't just gonna poof and I need better access to more tools, kwim? Where is the BCBA in this??????? 

I don't know, you deserve an award. Just saying. 

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3 hours ago, Cake and Pi said:

I'm pretty sure you and I had an exchange about that several years ago (At least I think it was you, maybe, possibly, probably, under a different SN?) where I mentioned that we did ABA for my non-ASD kid and you were were questioning why/how that would work... well, it worked because he actually did have ASD, lol.

That sounds like something I would say, lol.

3 hours ago, Cake and Pi said:

The road to diagnosis for him was an epic saga, seriously. I could write a book about it. We'd been doing ASD-specific interventions off and on since toddlerhood because they worked, but under different diagnoses.

Ok, but then you're really dogmatic about how ds6 is definitely not the duck quacking like a duck, walking like a duck, swimming like a duck because psychs are omniscient and everything is obvious because they rub their hands and divine and just KNOW? LOL :biggrin:  Sorry, I'm just being lighthearted there.

Fwiw, I think it's possible the children's hospital system that is screwing you on this. Our children's hospital system is a teaching hospital. Every screwy story I hear with drawn out mess came out of a children's hospital. I'm not saying *why* it happens, just that I've heard a LOT of these stories. Their departments are very split up, compartmentalized, and it changes how they think of kids. I don't know what the explanation is. I'm just telling you I've seen the reports, talked with the people, and what you're describing is happening a lot. I think sometimes there's political pressure. Remember, these diagnoses have economic implications. And I think there's a level of inexperience. 

Every time someone hears my ds' speech diagnosis they're like oh, you go to *insert name of really well known, nationally well known children's hospital near us", and I'm like no I drive 2 1/2 hours because that children's hosptial doesn't even have people trained in the best techniques. My ds has BEAUTIFUL speech btw. I was right. So that was my first reality check years ago, that paying big $$$ to the big names wasn't always going to get the best care. It gives the impression, the reputation, but sometimes not the reality. Sometimes, yes. I'm not saying why, just I've heard so many stories that I no longer assume.

The problem is, no one is omniscient. You can go to a private neuropsych and have the same thing happen with shallow, incomplete answers. No one is omniscient and some things are more obvious with time. My ds, for instance, when he got diagnosed with ASD1 was right on the line. His GARS scores, everything were at that really high 1. Brought a behaviorist in who worked under a psych, and they're like high 1, bordering on 2, not sure which way it will pan out over the long run. They were looking at language as the discriminator between the levels, and his language issues at 6/7 weren't as radically different from his peers as they were about to be. He had also had like $80k in speech therapy, remember. But give it another year, and even that became more obvious as his peers pulled away. 

So needing to point for breaks, needing the steps of life level stuff, etc., that's really ASD2, significant support. Or don't worry about the term but just say kids are not the same, some kids need more support than others. And kids need the supports SPECIFIC to what they need.

There's no like well this is autism, so I've got this nailed. There's this is what is happening so this kid needs support. Rinse, repeat, over and over. There's no knowing autism. Every person will have their unique mix and presentation. And whatever you call it, you have multiple kids with unique presentations and support needs. So I'm just thinking about you, and I'm like WHO IS HELPING YOU DO THAT? 

So if you got access to ABA before without a label, then do it again. Quacks like a duck, gets duck food and duck care. Any ABA tools, any tools that would help him you want access to. And as a mom, you need someone talking through with you what you don't know yet. Your oldest is going into puberty, so you're dealing with puberty, puberty with ASD1, and all these other wide ranging needs. So someone to help you keep your head on straight and talk through each kid individually and bring in inhome hours to get it done. Ie. clone yourself.

 

Edited by PeterPan
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3 hours ago, Cake and Pi said:

DS 6, on the other hand, needs me to actually brush for him, and then there's a high probability that he won't cooperate and it'll turn into a 2-person job or not get done at all.

There's a reflex that affects this. Does he mouth or chew on things or come up and sorta gnaw/nibble on people?  I think the reflex was in the hands, babinski. It has to do with nursing, which is so bizarre to me that my ds needed the work because he nursed! Anyways, Nope, not babinkski because that's feet. Ds had that too. It was very subtle when the PT tested him. I think it may have been Babkin. Basically I just stroked his hands. 

So whatever the reflexes, I'm just thinking maybe work on them for 6-8 weeks and see what calms down. If it's uncomfortable because of reflexes, that's hard to overcome. Meanwhile, you could get your BCBA to give you a visual schedule with the steps for brushing teeth. Or go to TPT or google image and get one. There are visuals of steps for anything, definitely for brushing teeth. Or you can take a picture with your iphone of each thing (toothpaste on brush, wetting under faucet, toothbrush across teeth while he SMILES, timer shows 2 minutes if you're going wild haha, foaming, rinsing, toothbrush put away). 

https://www.pinterest.com/pin/477029785510911907/  The one at this link looks good. You can save the image and throw into your word program and expand to fill the page so you can print. Then pop in a page protector or just tape on the mirror. If you click the actual link, it takes you to some weird site, not sure why. But it's saved here on pinterest, haha. 

I brushed both my kids' teeth a long time. Ds is independent now, and if they're not clean enough I send him back. He's not so bad anymore, but he's 11, kwim? But that's really high support when it's taking 2 people. Is the flavor on the toothpaste really strong? Both my kids are HIGHLY PICKY about the toothpaste. My ds used a particular Toms of Maine for kids that had a mild flavor. Now at 11 he tolerates one of the mints. Not the other, just the one. I think it's the spearmint. But cutting down on the extremeness of the flavor can help immensely. They just keep changing the toothpastes so sometimes it's hard to find the milder ones without flouride. (if that matters to you)

                                            Tom's of Maine Fluoride-Free Children's Toothpaste, Kids Toothpaste, Natural Toothpaste, Silly Strawberry, 4.2 Ounce, 3-Pack                                      I think this is what he used when he was younger.

I used Calm Child when my kids were younger. Now my ds can take capsules, so I give him straight chamomile. You might see if something like that, administered say 30-60 minutes before you want to start your bedtime routine, could work. So I give my ds his 5HTP (400mg time release, 8pm) and a capsule of chamomile, and we then can have a smooth bedtime routine at like 9-9:30. Before, it was running around trying to calm his body, dangerous, utterly insane. I'm just thinking as a stop gap till you get your pdoc meds. 

https://www.iherb.com/pr/Planetary-Herbals-Calm-Child-Herbal-Syrup-4-fl-oz-118-28-mL/13690

Edited by PeterPan
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On 3/23/2020 at 11:06 AM, PeterPan said:

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? 

Hi guys! Sorry I'm late to the party but thanks for the invite! I agree with everyone here that suggested just focusing on that phonological awareness. And if mom isn't so good at it, no problem, that can be something to work on! You can always get better at it, even as an adult. I find your description of knowing the entire word vs. parts really fascinating 🙂 On that previous thread that PeterPan shared, I talked about how to work towards the goal of doing everything out loud - but like Cake and Pi said, she is able to do it if the word is written down, but not out loud (yet!). So you start to do things written down - like writing the word 'flap', then taking out the /f/ sound (cross it out), leaving "lap." Etc. Then when that's easy, represent each sound (4 sounds, f/l/a/p/) with coins or buttons or whatnot, and take off the button that represents the /f/ sound. Then tap out the remaining sounds, l/a/p/. After that, try it out loud. Boom! Mastered that level. Moving on.

I would buy David Kilpatrick's book "Equipped for Reading Success." It's my reading Bible. I LOVE it so much. The first many pages are informational, and then the last 50 pages or so are his phonemic awareness program. It starts with syllables and moves ever so slowly down to the nitty gritty of phonemic awareness. My kids, even those who struggle with sounds, love it. I think they love it because it starts them where the work is really easy, and then slooooowly moves them along. If they need it, we use letters, then objects, then just sounds. It's so gradual that it's not stressful.

I'm so interested to hear how it goes with a probably dyslexic adult. 🙂 I'm not so great on the other language stuff, so I won't chime in on that.

A really big bonus of the phonological awareness work is that it helps so many other things, just by the nature of it... focus, patience, perseverance, etc. 

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  • 2 months later...

Update with more questions!

 

UPDATE:

We had DS 6's annual PS review recently and came out with an excellent IEP. He's got goals for articulation (make the "s" sound), auditory memory (follow 2-3 step directions), language (use correct syntax), reading (read at least 8 cvc words), writing (write "at grade level" by writing words that contain correct beginning, middle, and ending sounds), and math (understand numbers 11-19 as 10 and 1s). They increased his speech minutes and kept PT on consult. We also decided to move him to a different school with a higher sped population.

If this were a normal year, I'd be feeling pretty dang good. But it's not. Not only do we have COVID going on, but unemployment dropped state revenue so significantly that our already underfunded district is facing budget cuts of 12% or more. In response, school will only be held 4 days per week going forward. Our district is encouraging families to do fully remote learning in the fall, though we do have the option of choosing a hybrid model where students come to school once a week and do remote learning the other three days. This is not going to work for DS 6, so we're making the leap. We're going to homeschool him officially next year!

I found an in-state but out-of-district homeschool charter that we can use for funding (I'll have $1,500 to use on educational materials!) with very few strings attached. So now I can order pretty much whatever is going to work for him. It's all in the budget, lol.

Learning-wise, we're now heading into week 12 of me teaching DS 6 at home. He's still in lesson 7 of RS A, so it's probably safe to say that RS is not going to work for him. He's not a fan of the abacus, but he loves our Nooms (home-made c-rods) and playing with pattern blocks. He still knows 21 letter sounds, so he hasn't learned any new sounds, but he also hasn't lost any. We're making a sound book, focusing on 1-2 letter sounds each week. He gets a page with the upper and lower case forms of a letter at the top, and then we go on a sound hunt finding things that begin with that sound, which he draws on his page. We review the entire book every day, saying the sounds and words. He's really enjoying it.

I bought Ronit Bird's Dyscalculia Toolkit book and Kilpatrick's Equipped for Reading Success. I'm going to spend the summer reading those and then working through what I can with him. I also plan on experimenting with a bunch of other resources I've got temporarily.

 

QUESTIONS:

I'd love feedback on the following programs (I've got free trials/borrowed copies now):
ST Math
MUS Primer
Hearbuilder

READING: In addition to continuing with Kilpatrick, I'm leaning toward at least trying Sing, Spell, Read & Write with him this coming fall. I already own it and he seems to learn more quickly and retain better with songs than with straight spoken language, plus he saw me going through the box and is now super excited about it and wants to use it. I've never used SSRR though. I just scored a free kit years ago and held onto it just in case. I have no experience with the program itself. Thoughts???

MATH: I understand Ronit Bird is just supplemental, so we'll need a main math curriculum. All I know is that it's not going to be RightStart. 😭 I think I'll still incorporate what I can from RS, card games and such, since it's the program I used with my other three and I'm so familiar with it. However, I need something as a spine for DS 6. I borrowed a copy of MUS Primer and it looks like a good fit for where he is now. I worry about the levels beyond Primer though. I'm a bit nervous about using a mastery based program with him. He needs to keep reviewing or he'll forget what he learned. Do the review pages incorporate skills from earlier levels as you move through MUS?

TIA!

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22 hours ago, Cake and Pi said:

he loves our Nooms (home-made c-rods)

Congratulations on moving to homeschooling! Yes, you'll do great.

So I would look at ronit Bird. Ok, you're saying you want a full alongside. Thing is, his disability is so significant you don't need a *lot* alongside *right now*. I have used some workbooks alongside. Instead of thinking full curriculum, think complement. Do what RB doesn't do, not what it does. A kid with dyscalculia doesn't need more computation. He needs more APPLICATION. So look for things that involve measuring, graphing, word problems, understandign the language of math. I have used tons of stuff, but I can tell you I just go to my favorite haunts and find what strikes me. 

Carson Dellosa

Teacher Created Materials

Evan Moor

These are my three uber favs. I'm also seriously in love with ANYTHING from Lakeshore Learning. Dump money there. I buy math kits from them. Look for clearance, especially if you can get in a physical store. I find things from them regularly half off. As far as workbooks, Lakeshore sells stuff too. See the samples, start with a little something, go with your gut. Don't try to do too much at first, kwim? One curriculum is not the cure for everything when there's an SLD.  I really like "daily warmup" type workbooks. There was a "Using the Standards" series for math I really liked. Graphing Art from Teacher Created. Just look through stuff, see what you find. there's a workbook that focuses on the basics I like, but I'm not sure I would have wanted it at that age. I can grab the title if you want. I like it now, but really at this stage you want Ronit Bird, games, application. 

22 hours ago, Cake and Pi said:

ST Math
MUS Primer
Hearbuilder

What is ST math? 

No, I would not use MUS. Focus on the Ronit Bird, because it's the most foundational, most meant for dyscalculia. Unless you find it fitting. But I'm just saying MUS is about the same level of instruction as RS. RB is intervention.

Hearbuilder is fine but that's therapy. I'm not up on Kilpatrick's stuff. Does your ds pass the Barton screening tool? Have you administered it? I think you could make more progress in phonological processing with a high quality program. There are some free OG options. If your ds passes the Barton screening tool, you can begin any OG program. If he does not pass it, you need to back up farther and are going to need more support than your letters of the week approach. That's charming for now, but I think you might want to step up the pace on that and within the next month make a move to the next step with either a program to intervene on his phonological processing or a full OG program. 

Ok, you have RB's Toolkit. Have you seen her ebooks? Her Dots ebook is superb. We spent 1-3 weeks on a two page spread. The ebooks are inexpensive and rearrange the instruction into a logical order and include videos. HIGHLY recommend even when you have the print books. Do what you want, but just saying.

Oh my, you want to use SSRW? I missed it, does he have dyslexia? Why the IEP? What are his diagnoses?

https://bartonreading.com/students/#ss  Here's the Barton screening tool. If he's not passing this, he doesn't have the foundation to succeed with *any* OG based program. So this is free and would give you some info about where to start with intervening. I love that he's excited about learning!! However you also want him to be SUCCESSFUL. If you're looking at using a charter, can they be compelled to offer services? Intervention? Do they have anyone who is OG trained or solid materials you can borrow? 

If you're asking what would be *charming* and the most charming for a fun loving dc who needs some OG, sigh, well Barton isn't charming. But still do the pretest and see what happens, kwim? *Some* kids with a reading disability can do AAR successfully. It's charming. There is free OG and some tutors will be able to make it charming. There are ways, sure.

http://www.helpinschool.net/home/reading/reading-and-dyslexia-overview/reading-and-dyslexia  Here's an article on SSRW for dyslexia. I'm not sure what you have going on, but it's more important that he be successful than that it be charming. You can make things charming by applying the skills in fun ways. You can bring in Lakeshore Learning kits, go multisensory, etc. I used the letter magnets from Lakeshore along with Barton for my ds. I used phonics dominoes, etc. etc. You can be fun without a fun program. Main thing is to get a tier of intervention that will connect with him.

http://www.marooneyfoundation.org/professional-learning.aspx  free OG materials 

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5 hours ago, PeterPan said:

A kid with dyscalculia doesn't need more computation.

We don't know yet if he has dyscalculia, but I suspect not. His neuropsych eval said he was at risk for SLD in reading, writing, and math (and ADHD) based on his achievement testing being that much farther below his (low-average) IQ. HOWEVER, *I* believe that his math ability may actually be pretty close to average and that his math learning so far has just been severely impeded by his language difficulties. He has excellent spatial skills, and when he plays with our c-rods I get the impression that he's got an innate grasp of quantity as long as no language is involved. You add words like "eight" and "middle" and "more" and it all goes out the window. Point being that I think it's too early to really tell if he actually has dyscalculia or if he has language-limited math achievement.

5 hours ago, PeterPan said:

I'm also seriously in love with ANYTHING from Lakeshore Learning

Yes! I love Lakeshore! And Didax. ITA. Just about anything from either of them is awesome.

5 hours ago, PeterPan said:

What is ST math?

It looks really promising and claims to be a math program that doesn't use language. "Spatial-Temporal Math." I've read some maybe not-so-positive reviews online, but none are from parents with language disabilities like my DS has, so it still seems worth looking into.

5 hours ago, PeterPan said:

MUS is about the same level of instruction as RS

Really? It looks so much more streamlined and simplified to me, like all the bells and whistles were removed. At least that's my impression of Primer. I haven't looked through Alpha and beyond. Did you try MUS with your DS? I met the program author, Steve Demme, at a homeschool conference a couple of years ago. I wish I would have paid more attention. I think I remember him saying he wrote the program largely to meet the needs of his son with Down Syndrome, and, incidentally, my DS 6 has a learning profile very similar to a child with milder Down Syndrome.

5 hours ago, PeterPan said:

Ok, you have RB's Toolkit. Have you seen her ebooks? Her Dots ebook is superb. We spent 1-3 weeks on a two page spread. The ebooks are inexpensive and rearrange the instruction into a logical order and include videos. HIGHLY recommend even when you have the print books. Do what you want, but just saying.

I don't have any Apple devices, so I can't get any of her ebooks. 😞

5 hours ago, PeterPan said:

Oh my, you want to use SSRW?

Well, I already own SSRW, so...maybe? I only used the SSRW readers with some my older kids. Two needed very minimal instruction and one taught himself before I got around to it, so I just never needed the complete program.

5 hours ago, PeterPan said:

I missed it, does he have dyslexia?

He is at high risk for dyslexia. I probably have dyslexia. My brother is diagnosed with dyslexia. DS 10 has a dyslexia diagnosis. It would not be surprising at all if DS 6 were dyslexic, and it's probably safest to proceed as though he were dyslexic. 

5 hours ago, PeterPan said:

Why the IEP? What are his diagnoses?

His main diagnoses are neurodevelopmental disorder associated with his birth history (IUGR preemie) and moderate-severe language disorder. He also has moderate-severe articulation disorder, sensory processing disorder, mild (sub-speech) hearing loss, and a *very* long list of minor physical diagnoses/differences that probably don't make much difference individually but altogether might impact his ability to learn and achieve. He also almost certainly has ADHD-inattentive (no hyperactivity). He would have been diagnosed at his last eval except that the questionnaire I filled out did not endorse inattentiveness. Now that I've been trying to work with him at home for a few months, I can see that he absolutely does have issues with inattention. He is very much off in la-la land a lot of the time.

5 hours ago, PeterPan said:

Here's the Barton screening tool

Did it a couple months ago and he did not pass any part of it. This is how we came to the conclusion that he needed a lot of focused attention on phonological awareness, hence the Kilpatrick book. That said, *I* didn't pass the Barton tutor screening and I still learned to read, so I'm inclined to run phonological awareness and reading instruction in parallel. He may spend a veeeeeeery long time on phonological awareness before he can pass that Barton screening. I figure it's okay to keep moving forward at least learning the letter sounds and beginning some digraphs and blends as he's able to, regardless of his passing the Barton screening. Eventually all the pieces will be present and then we can work on clicking them into place together. Or this was my theory, anyway.

5 hours ago, PeterPan said:

So SSRW will absolutely go too fast. Since we just spent 11+ weeks on 7 lessons of RS, I'm thinking just about everything will go too fast. 

This site is *very* interesting. It recommends DISTAR/ Reading Mastery. TYCTR in 100EZ Lessons is also DISTAR. Does that mean that 100EZ might work? Okay, there wouldn't be enough practice in 100EZ. Maybe I should look at getting some Reading Mastery materials. I actually used 100EZ with two of my boys (plus SSRW readers and Primary Phonics readers) and am very comfortable with the system. 

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If MUS Primer looks good for now, don’t worry about the upper levels.  You can change or adjust later. 

If retention has been an issue in math, expect to reteach sometimes.  It’s okay.  The lower levels of math can take a lot of work, that is okay. 
 

I don’t know where you can find a list (maybe school?) but there are lists of math language/vocabulary words, for younger kids.

It is things like more/less, half/whole, part/whole, longer/shorter, heavier/lighter.  
 

These are more abstract in their way, but also something possible to make concrete (compared to some other abstract things lol).  If you have an idea of words to work on, you can look for chances in games or during the day.  
 

These are hard concepts, but they go a long way.  

 

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11 hours ago, Cake and Pi said:

His neuropsych eval said he was at risk for SLD in reading, writing, and math

Well fwiw, I would assume he has all three and teach them like he has all three. You can also be *math gifted* with dyscalculia. I think that's possibly what you're looking at, given what you're describing. So literally teach him like he's both. The language thing you're describing *is* the dyscalculia. Math processes in multiple parts of the brain so the part on one side, not affected by language, is possibly very strong, making them math gifted, and the part that is over on the other side, tucked in with the language, has a disability. But yeah, if a psych is saying he suspects it, I would just assume it is. Worst thing that happens is you start into materials for each disability and he FLIES through them. But I don't think he will, not with what you're describing. Honestly, he's actually harder off than my ds was at that age, just saying. Now if he was in the ps, I can see why it happened. But just saying it's not nothing the psych is seeing. I would consider assuming all three, teach from the beginning with appropriate methodology for all three, so you don't waste time. 

There's a book on the math that explains the parts of the brain thing. https://www.amazon.com/Brain-Learns-Mathematics-David-Sousa/dp/1483368467/ref=sr_1_2?dchild=1&keywords=how+the+brain+learn+math&qid=1591098643&sr=8-2  Ooo look, new edition.

11 hours ago, Cake and Pi said:

mild (sub-speech) hearing loss,

How is this affecting his phonological processing? Now it makes sense why you're wanting the Hearbuilder. Is he still getting speech? If he still fails the Barton screening tool when you administer it, I'm going to suggest you strongly consider LIPS. This is a tool SLPs use to build phonological processing. It's NOT open and go, but it's the strongest tool for your situation. I carried the manips and methodology right on through levels of Barton. HIGHLY recommend. 

http://ganderpublishing.com/product/lips-manual.asp

11 hours ago, Cake and Pi said:

He is very much off in la-la land a lot of the time.

Hearing loss is a funny thing. The withdrawal, in your own world of hearing loss, even mild, can be significant. I've seen it in multiple people and if you read about social thinking intervention they're doing it in that community as well. So fwiw you *might* consider working on *joint attention* and seeing what happens. Maybe even go through some social thinking materials like We Thinkers 1. I've seen kids who were not diagnosed ASD but straight ADHD or even not yet diagnosed ADHD who really blossomed. It was just good instruction, giving them some common language to talk with their teachers and parents. The kids picked up the clue phone and it made a big difference. 

Did we already mention Braidy to you from Story Grammar Marker? They are doing tons of free workshops right now, and of course they always have lots of free info on their website and blog. They load up significant videos showing how the approach works. They have a new workshop coming up tomorrow (free!) you could sign up for that is going to be on using videos to teach narrative language. I think if you got a tool like this (like even just learning it yourself with the info online, not plunking out for anything yet), you could begin to weave that into your tv time, your picture book read aloud time, etc. That would give you a good headstart on the SLD Writing using an approach that is disability appropriate but not costing you anything. With WTM we talk about narration, but when kids have challenges we want to kick that up and make it REALLY EXPLICIT. This is how you would get there. He's right on the line for bumping up to the regular SGM or the ASD kit (which I like for the extra things it includes), but for right now you could see what you could do for free just by doing their free webinars and watching their videos and stuff. It might be just enough.

11 hours ago, Cake and Pi said:

He may spend a veeeeeeery long time on phonological awareness before he can pass that Barton screening.

Are there more ways you could get access to LIPS? I think as long as his hearing is in order that with even a month or two of LIPS he'd pass the screening. 

 

11 hours ago, Cake and Pi said:

so I'm inclined to run phonological awareness and reading instruction in parallel.

Yes, I've shared a document in the past that shows how I integrated Barton and LIPS. I *had* to do this, because my ds has apraxia and could not make all the sounds and needed the physical hands on instruction woven in completely. 

11 hours ago, Cake and Pi said:

regardless of his passing the Barton screening.

You might readminister it if it has been a while. Barton's screening tool is not so much about knowing all the sounds as being able to discriminate them (which goes back to the hearing issue) and having adequate working memory. It's why the skills are considered foundational.

That's interesting that you don't pass the tutor screening. Do you know why? 

Sometimes what happens is we assume because we got by, our kids will. Unfortunately, our kids are dealing with their own picture, their own additional complexities. That mild hearing loss is a significant complexity. And he may have other things on top of it you didn't have. So my dh has a language disability gene that my ds got, but my ds could got through school and college and grad school and my ds never will. Same gene, but we just piled too many things on top of my ds on top of that gene. Where my dh could use his bright brain and scrape through and infer and memorize and make it work, my ds just can't get there. He's still bright, but he has consistently needed intervention level materials.

So just your tip of the day, but if you get intervention level materials for each thing where the psych is flagging that it may turn out there are disabilities, you may head off some problems. When my ds got his evals, they did the same thing at 6, hedging. By the time we were done even just a year later the SLDs were very obvious. At this point NOBODY disagrees that my ds warrants all three SLDs. But at 6, sure the $$$$ neuropsych did the same thing, hedging. So that's why I can say you know, just mom to mom, my suggestion would be assume they are, learn the methods, teach like they are. 

Fwiw, I assume my ds is writing gifted and writing disabled. Math gifted and math disabled. Nuts, in some ways my ds is reading gifted and reading disabled. It's not mutually exclusive to say someone can be so bright and have strengths and then really need a high tier of intervention. So sometimes my ds goes through intervention materials *faster* than the average bear. But without them, he struggles to go forward. You'll figure it out and find your way. I love that you're getting access to funding, very wise. And it would be interesting to see what the charter can be compelled to provide. In our state, the charter school would be compelled to fund therapy services in the IEP. So then charters will offer more hours than the ps as a way to lure you in. If you found an SLP who specializes in literacy and got the charter to fund it, that could be amazing. You could look for stuff like that.

11 hours ago, Cake and Pi said:

we just spent 11+ weeks on 7 lessons of RS

Oh dear. I was remembering, I think we spent a *month* on each two page spread in the RB Dots ebook. It was actually really fun, because there are games and options. My ds did need that time though, yes. 

11 hours ago, Cake and Pi said:

It recommends

Fwiw, I just found that with googlefu, I know nothing about that site. I'm not sure there's really a replacement for LIPS if he needs it. Well there's a wonderful workbook by DeGaetano you can't even find anymore. LOVED that workbook. DeGaetano has great stuff btw. 

If you can get traditional curriculum through the library, that might be a way to start. Our library system can get reading programs, etc. Sometimes teacher colleges will have a library with materials. If you're *buying* my advice would be to buy intervention level materials, therapy level materials. It's not just about slowing down. Therapy materials put in more steps and make explicit things that are left to inference or assumed the dc will just get in regular curriculum. It's why even with 11 weeks the dc couldn't succeed with RS, because it wasn't about the speed. He actually needs more explicit instruction, a higher tier. And if your budget is limited, which it is, then you need to limit mistakes. 

If you watch ebay, you may come across things. You can save a search there. I don't know how high this will go https://www.ebay.com/itm/Lindamood-Phoneme-Sequencing-Program-LiPS-Kit-for-Reading-Spelling/133423960996?hash=item1f10b013a4:g:Y6AAAOSwaKZe0TYf  I made it work with just the manual and tiles. 

11 hours ago, Cake and Pi said:

Spatial-Temporal Math

I'm pretty sure we had someone use this here and she liked it. I think the thing is you have to bring the language over and for my ds you have to generalize. So if my ds does it one way, he has to do it more. Many kids with language issues are going to struggle with the language parts of math, like translating it into word problems or hearing a word problem and figuring out the equation, not so much the visualization. My ds is stunning at visualization, sure. 

The main thing on the math is that you already have SO MUCH in that RB Dots that you could keep busy for the next three years with that book. Guaranteed. If you add too much, you'll lose focus. You already have something good. 

Oh ok, I just looked it up. No, honestly, the ST math left too much to inferences for my ds. 

You'll try things and figure it out. We can give our hindsight, but you'll find what works for your ds. I just wouldn't burn through that $$ too fast. You'll probably find new things you want as you go along. And just in general, I wouldn't spend it on curriculum at all, not mainstream. For my ds like that, the things need to be more therapy/intervention level or the special things I can get at places like Lakeshore Learning. 

https://www.lakeshorelearning.com/products/math/numbers-counting/unlock-it-number-match/p/LC127  My ds LOVES the different kinds of locks. We got subtraction locks, but there are so many kinds. Bonkers for them.

https://www.lakeshorelearning.com/products/games/board-dice-games/the-allowance-gamesup-sup/p/LC1279  

https://www.lakeshorelearning.com/products/math/math-manipulatives/wild-animal-counters/p/LM986  We really loved the counters. They come in all kinds and we could easily use them with any curriculum.

https://www.lakeshorelearning.com/products/math/numbers-counting/sequencing-numbers-span-stylewhite-space-nowrap1-2-span0-puzzles-setof3/p/LL568  These kinds of things were hard for my ds. You can find them for free online as printables.

https://www.lakeshorelearning.com/products/math/money/counting-money-puzzles-level1/p/DD321  They have all kinds of these matching puzzles for money. Also Christine Reeve has some in her TPT where you match what dollar bill you'd use to pay for something. So the candy is 67 cents, what bill do you hand them... But yeah, matching puzzles are great for money, time, quantities, etc. You'll find a bunch of them at Lakeshore. Saw one for quantities up to 100 that could be stellar. You can also print cards for that or make your own games doing that, making up types of manips and what the written will look like.

https://www.lakeshorelearning.com/products/math/time/time-grab-play-game-grspan-stylewhite-space-nowrap1-2-span/p/LM255  I don't have this exact one, but we do a lot like this. Sometimes you look at their $20 game and go ok how could I play that with time flashcards from Dollar Tree and the clock I already have, kwim? 

https://www.lakeshorelearning.com/products/math/basic-operations/visualize-it-part-whole-addition-and-subtraction-cards/p/EE991  I have these for multiplication but they're looking sharp for add/subtr too.

https://www.lakeshorelearning.com/products/math/basic-operations/pop-add-to-12-game/p/HH966  This looks so cute! And again, this would be the kind of thing where I'd see it and go ok how can I make a little board and do that myself, kwim? Like just a piece of blue foam and sea creature counters. whatever you've got. Buttons. Whatever is cute from dollar tree. It's more just the idea.

https://www.lakeshorelearning.com/products/games/fine-motor-games/how-tall-am-isup-sup-measurement-game/p/FG246  I wouldn't *buy* this unless money were uber flush, but again what a great idea!! What I tried to do was take whatever we were working on for number sense and computation and carry that over to measuring. Then you can measure lots of ways (tape measurer for $1 at Joanns, ruler, volume, etc.). So then you're comparing and asking how much more is this than this, etc. etc., just weaving in those fledgling skills. This is an awesome stage to be doing a lot of measuring, comparing.

https://www.lakeshorelearning.com/products/games/fine-motor-games/classic-dominoes-game/p/FG524  Dominoes! So readily accessible, and they blend really well with your RB math lessons. 

https://www.amazon.com/Gamewright-GWI5215-Go-Nuts/dp/B0016WD9QS/ref=sr_1_3?dchild=1&keywords=go+nuts+game&qid=1591101591&sr=8-3  We played this a lot as a way to reinforce those basic skills. Almost any game you have would work. But when I'm saying we played games, literally they were games, lol.

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https://s3-us-west-2.amazonaws.com/palms-awss3-repository/Shared_Content/BAS/ASERT/ASERT+1332/ASERT+1332+Teaching+Joint+Attention+Skills+in+Young+Learners+wtih+ASD.pdf  

Here's a powerpoint on joint attention. It seems kind of thorough and uses a lot of pictures. For us, working on joint attention improved behavior. So you might see if between the hearing loss and the in his own world, if some strategies for JA would get him reconnected.

Fwiw, I'm not suggesting anything too complicated. The article is really thorough, but at it's most basic we're just saying wait till you get that, make each next step need that back connected with me checking in. I would not prompt or actually say it. Just slow down and wait for it, let the forward motion of the game or activity depend on him reconnecting.

The other thing is you're going to see with time how that plays out. For some kids the checking out is language overload. It's attention, but it's connected to how they're processing. That's going to take time to sort out and become more obvious.

But yeah, where this pdf says to praise them for good looking, mercy don't do that. I FIRE any worker who does that. Don't even get me started. You want it to be natural, where they figure out that re-establishing connection gets them something they want, like the next step in the game or interesting nonverbal feedback. I used to use exaggerated facials with my ds so he figured out that actually looking at me at points in the conversation got him helpful information or was interesting, lol. Now he references quite well and NATURALLY. So you want them to figure it out by having it get them something they want.

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100EZ is the main reading program that I used to teach my four kids to read, and it worked for my oldest three, so I used it for my youngest, even though I was suspecting dyslexia with her by age 4/5. We spent a lot of time on language arts and reading, so 100EZ was not the only thing that I did with DD14, but it was a main focus, and we completed all of it. All of the reading that I did with her at that age was a struggle, because the phonics just did not stick with her. By the end of second grade / beginning of third grade, she could finally haltingly read an easy reader book, but was mostly reading by context cues, and getting her to sound anything out was still a struggle.

I didn't know about Barton back then, and I was having a hard time getting anyone in real life to guide me about helping someone with dyslexia, so DD was turning 10 by the time I figured out how to get her evaluated and diagnosed with dyslexia. We found out that her phonological disability was severe. All of the things that I did to help her with reading, including 100EZ, had helped her, but had not remediated the phonological disability underpinning the reading issues. What finally made a difference with her was hiring an OG tutor and then enrolling her in a private dyslexia school. I had three other children to teach, and I knew I needed outside help.

So my experience is just anecdotal, but I would say that for someone who has deep struggles with phonological processing, that 100EZ is not sufficient. Every child is different, and since you already own it, 100EZ might be worth a try for you anyway. DD did advance her reading skills with it. But it does not remediate dyslexia or phonological issues.

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14 hours ago, PeterPan said:

How is this affecting his phonological processing? Now it makes sense why you're wanting the Hearbuilder. Is he still getting speech?

The audiologists seem to think his hearing loss shouldn't cause any problems. They say it's mild enough that it shouldn't impact speech development at all. He gets yearly follow ups because a form of progressive, juvenile-onset HL runs in my DH's family, but so far he seems not to have inherited that. The HL is most likely stable and related to his birth history.

I'm sure that he still wouldn't pass the Barton screening because he's still struggling with segmenting sentences into separate words and words into syllables in Hearbuilder. He can't get past the very first exercise where it gives him three choices and he's supposed to find the one that has either one or two words. He's super frustrated about it and has reduced to tears the last couple of times I tried it with him. He doesn't seem to understand what a word is, and no explanation from me has helped. Add in syllables and he gets extra confused.

He had speech at school, but he will loose that now that we're going to officially homeschool. In our state, any child who is not full time is considered to have relinquished their right to FAPE. He will loose his IEP and all related services. I've reached out to our Children's Hospital and I'm working on getting him on a wait list to resume speech with them. We stopped private speech about two years ago because he was getting so many minutes (and summer school) through our district that it seemed like an easy thing to drop so streamline our therapy- and medically-packed schedule. We'll get it going again here asap, but it's going to take at least 3-6 months to get through that wait list.

15 hours ago, PeterPan said:

That's interesting that you don't pass the tutor screening. Do you know why? 

I'm probably just dyslexic. Despite being highly gifted, I didn't begin reading until half-way through 4th grade, around 10yo. I might have read earlier if my mom would have let the PS do any testing beyond IQ or provide any interventions. She got my IQ back and basically said, "See? She's really smart. She's just being lazy. She could read if she wanted to."

17 hours ago, PeterPan said:

Did we already mention Braidy to you from Story Grammar Marker? They are doing tons of free workshops right now, and of course they always have lots of free info on their website and blog. They load up significant videos showing how the approach works. They have a new workshop coming up tomorrow

No, you didn't. It looks interesting. I signed up for the online workshop. Thanks!

17 hours ago, PeterPan said:

I'm not sure there's really a replacement for LIPS if he needs it.

I'm not sure I'm qualified to teach him with LIPS? I didn't pass the Barton screening. I also don't honestly have a ton of time. I can probably reasonably spend about an hour to an hour and a half with him one-on-on in a typical day. The three other boys are all very high needs as well (between the three of them we've got ADHD x3, anxiety x3, ASD x2, dysgraphia x2, dyslexia x1, ODD x1, and probably more that I'm forgetting).

Is there no other program that is likely to do the job without being super hard for me to pull off?

17 hours ago, PeterPan said:

For some kids the checking out is language overload. It's attention, but it's connected to how they're processing. That's going to take time to sort out and become more obvious.

Yes, I'm interested to see how this progresses over the next couple of years. He's able to do nothing or the same repetitive something for ridiculously long stretches of time. I can call everyone to our home classroom in the morning and he'll sit at his desk quietly basically forever. I've discovered that if I get busy busy with the other kids, he will really just sit there moaning, humming, making sound effects, etc. for a couple of hours. If I don't give him a task he won't do anything. If I do give him a task he'll either do it non stop until I take the supplies away, or he'll ignore it and continue just siting there making noises. It's like he's got his own little world in his head. This is probably how he got so lost at school. The teachers did report at his IEP meeting that he needed an adult to initiate tasks.

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2 hours ago, Cake and Pi said:

In our state, any child who is not full time is considered to have relinquished their right to FAPE.

Our ps tried to say this, but that is *not* technically correct. The state can say whether or not the student receives services while homeschooling, yes. But you did not give up your FAPE. Your  FAPE is a legal right, a federal right, and you can go back to the ps at any time. To give up your FAPE requires you to sign a legal document (like I have), saying you're giving it up, and technically you're doing it *in exchange* for something else being offered by the state. So your state is like ours where the ps is not required to offer services to homeschoolers, but that's not technically the same as giving up your FAPE. The evals are a federal right and the writing of the IEP is not, same gig. You haven't given up your right to evals by the ps (because it's federal law that they identify students with disabilities), but states decide whether the ps has to go ahead and write the IEP/504.

2 hours ago, Cake and Pi said:

he's still struggling with segmenting sentences into separate words and words into syllables in Hearbuilder.

We have another poster here (was it @Crimson Wife?) who said her dc with language issues and ASD is getting unusually helpful therapy through an SLP specialized in HL. For my ds, yes understand spelling and morphology was a language issue. It wasn't clicking at the bits level because he was not even understanding language as separate words. I don't know if this is what your ds is experiencing, but for my ds he had memorized whole language (echolalia) and was trying to go from whole to parts. So they memorize sentences or phrases connected to situations or pictures, but they haven't broken it down to individual words. No matter how bright they are, it's too hard for their brains to break down from whole to parts successfully, so you get this memorized language that can talk but doesn't understand each individual word in the sentence, let alone each part (roots, prefixes, suffixes, spelling). He could memorize it, but it was clear he didn't understand, it wasn't clicking.

The answer was to use speech therapy materials and do the reverse, going from the ground up, building what SHOULD have happened developmentally and didn't. And frankly, I've put an obscene amount of funding into SLP and never found an SLP who wanted to do it. I've read on therapy vendors about it and know it can be done, but they just don't do it. The therapy process is so driven by IEP goals that it doesn't generally seem to happen. My ds' IEP will say something like 15 minutes a week, blah blah. We're talking about something much more intensive, a lot more language work. 

This link has a video (the free part) that made this click for me about why whole to parts processing was glitching his language acquisition. I mean, it's brilliant, but at the end of the day he needed explicit instruction to go the other way, parts to whole. https://www.northernspeech.com/speech-language-acquisition/natural-language-acquisition-in-autism-echolalia-to-self-generated-language-level-1/

This SPARC series was some of the most powerful stuff I used 

https://www.linguisystems.com/Products/31161/sparc-for-concepts.aspx

https://www.linguisystems.com/Products/31159/sparc-for-attributes.aspx

https://www.linguisystems.com/Products/31162/sparc-for-grammar.aspx

We're STILL working on language stuff, if you can imagine. We had gone through so much, getting so much progress, but there's just always more. I had a writing workbook I wanted him to do (How to Write a Super Sentence) and it was teaching them sentence expanse through grammar. So he needed to be able to add a "when" to expand the sentence. He could add a "where" but not a WHEN!!!! Ugh. But think about it. It was easy to work on where (prepositional phrases), but we missed do it with adverbs. And then we didn't do when with adverbs at all. So he couldn't do the *writing* because he couldn't generate the grammar. And it went right back to this language issue. And with a kid who seems to have a ton of language. But that's what happens when it's all memorized, whole to parts, they don't really understand it at the single word and parts of words level.

So everything you do for language will be richly repaid. Working on LANGUAGE ups my ds' reading. Always always. I got him reading through at least a 5th grade level with Barton by the end of 1st grade, took him into a reading tutor (also SLP btw) and I'm like why won't/can't he read? She's like oh he reads great, I just see morphology to work on. But he wasn't reading because he didn't really understand what he was reading. And that will happen, because reading is constantly recombining words. So we have to make the individual words have meaning so they can understand them when recombined.

2 hours ago, Cake and Pi said:

but it's going to take at least 3-6 months to get through that wait list.

What you might do is work through SLP materials yourself with him using stuff like that from Linguisystems, then let the SLP follow up when you get that access. My ds is doing 4-6 hours a week of speech therapy right now (yes, you read that right, for real), using a variety of SLPs, and like I said they are SO vague, voodoo. Crimson has been successful at finding someone who will do what needs to be done, but I haven't. I can look more places, but I've used a lot of SLPs over the years, sigh. These are not typically people who really like grammar and linguistics and are like oh yeah let's dig in on this. They want to use this sort of meta level applied approach, same book/theme for all their clients, apply it, blah blah. So I gave up and was like fine, I will work him through the workbooks and you all do your vague applied life junk, whatever. 

Disclaimer, my ds is a total pain in the butt to work with. So it's not like they could, over the years, easily do what they wanted to do. He's a lot easier now, but he was not. But I don't think that accounts for it. There are SLPs that you say syntax to and they just CRINGE. They're like oh no I got in this to talk, play games, work on conversation, blah blah. I even tried an SLP who had her undergrad in linguistics!! I was like she'll get this. I studied linguistics, so I know and she'll know. Nope. Zero clue.

Going to the hospital may bust through that IEP driven stuff. A lot of the people doing therapy outside the ps were in the ps or are part time private and also ps. So the way the ps does things drives what is happening privately too, unfortunately. And the IEP process says move on, so foundational steps are glossed over and they just move on. So hopefully, maybe, going through the hospital could bust you out of that. And you can do what you can do while you're waiting for them or as a complement to them.

For real the charter school is not offering to implement the IEP??? I'm shocked about this. In our state, their butts would totally be compelled to. It's why they get so much funding and can offer that $1500 slice of the pie. If the dc has an IEP, he comes with a tier of funding from the state. So the increased funding allows them to offer services when the state is paying for the charter school. I'm just flabbergasted they're not offering to pay for speech therapy. Then you could have both. I'm definitely in the more is more better camp on speech therapy. SLPs are about the best people with my ds right now. Almost every goal in my ds' IEP, except for math haha, goes back to speech therapy. It can be intervention specialists, but often they're under trained for his needs. So we get a lot of mileage with SLPs or we're using SLP materials ourselves.

But conversely, that means if you hand all the goals to one SLP, they blanch. Even if they have 1-2 hours, they blanch. It's hard to get everything done with one person, one session. They end up rotating out goals, meaning everything takes forever. Meanwhile you're like come on I want him to READ, kwim? 

Fwiw, I wouldn't push reading before comprehension. You can end up with him not able to process the meaning and read at the same time. https://www.amazon.com/Word-Callers-One-One-Research-Informed/dp/0325026939/ref=sr_1_1?crid=2KYXF29ZS40GR&dchild=1&keywords=word+callers+by+kelly+cartwright&qid=1591175629&sprefix=word+callers%2Caps%2C166&sr=8-1  This book is exceptional and simple to implement. A lot of ideas at the back are things you might already think to do but not realize why they would be so helpful. The included cards and the things you're supposed to do with them are helpful, and then you'll realize how that ability to multi-process is showing up in other ways in his life as well. I don't know if your library would have the book and cards when they reopen. I guess see. 

2 hours ago, Cake and Pi said:

I also don't honestly have a ton of time.

Ok, then that's a challenge. I can see why you're so frustrated.

I think the key there is to focus on what will really make a difference and be pivotal and not spend time on anything that isn't pivotal or likely to work. There technically is the open and go program FIS. There was a workbook you can hardly get access to.  Let me think. I think, given what you're describing with his level of language, you might consider focusing on language for a while instead of phonological processing. You could start with the SPARC books because they are very open/go. They start with discriminating/using the concept/syntax at the word level, go through sentence, and end with them building narratives using the concept/syntax goal. So each unit/chapter goes through this process of building them part to whole for the thing. It's why it's brilliant and why it can flip that whole to parts learning that doesn't have him understanding individual words.

My ds is considered dyslexic and tests as dyslexic, but what you're saying is he's struggling to process at the bits of words level. 

What I did with my ds was starting with phonological processing and later doing the language work, and the end result was comprehension problems. But I'm with you that I probably, starting over, wouldn't be like ALL one way or the other, kwim? If you've got 90 minutes a day and 30 minutes of that is spent on math and let's just say fun stuff (games, read alouds, nature walk, teaching him to put away his laundry and life skills, learning the alphabet, doing cognitive therapy work like RAN/RAS or whatever), then that leaves you 60 minutes a day to work on language in some fashion. I would just put on history/science as audiobooks or let him tag along with siblings. So you're really saying 60 minutes a day to work on reading/language. And that's a LOT!! If you use that really well and have a plan and work that 60 minutes consistently, you're going to make tons of progress. I think it's enough.

My ds needed short sessions at that age anyway. So then I would think of that as 6 sessions of 10 minutes or 4 sessions of 15 minutes. And then I'd divide up your resources into those chunks. If you want to blanch, I was doing a chapter of SPARC a DAY with him at one point. That was insane and a lot of hard work, lol. But that's like 60-90 minutes to get through one of those chapters (from sentence to narrative applying the targets). But that means if you spread it over a week, 5-6 sessions, then you can easily get it done by working one of those 15 minute sessions a day, kwim? You'll get through a chapter a week at that pace. So that would eat up one of your 4 sessions each day.

Then like you say, I think you want at least one session where you're working on phonological processing. You can tie writing into that. I did the whole sandpapers, sand tray, letter magnets, etc. thing at this age (6) and yes you could do that in a 15 minute session. It weaves together with LIPS very easily. But I agree, it's not scripted and is going to eat up a lot of your brain time.  Not so much your time with him, but your brain time, sigh. If you could hire it done, that could be ideal. In all seriousness, right now SLPs are SO easy to get into because they are BEGGING for work. They aren't seeing people in person so they're doing teleservices. What you could consider doing is looking for an SLP who specializes in literacy and seeing if there's a way to make that happen. See if the charter will fund SLP. See if the charter will fund an intervention specialist and then find someone who is an intervention specialist who is OG trained, kwim? 

So that's 2 of the 4 sessions. Then I would do vocabulary work. You need some structure. http://www.e4thai.com/e4e/images/pdf2/100_vocabulary_primary.pdf  Here, this is free and it's what I used. I fleshed each chapter out with more workbooks and games, but just do games. That's your pricepoint. You can take a simple deck like the Pickles to Penguins game https://www.amazon.com/Outset-Media-Penguins-Thinking-Connection/dp/B001R0XPUO/ref=sr_1_2?crid=24G0OBYAUDTA5&dchild=1&keywords=pickles+to+penguins&qid=1591176964&sprefix=pickles+to+pen%2Caps%2C166&sr=8-2  and it will give you SO many pictures to work on these things. As you work through the workbook, it will be obvious what your little game should be. So work through the workbook 10 minutes and apply with the game for 5. If you're working on describing, then you make little games with describing. If you're working on categorizing, then you categorize. If you're working on function, make little games where you sort or describe by function. Linguisystems has a game, sure, but you can do just fine if you have a stack of pictures.

That leaves you one more session, and for that obviously you're going to work on narrative language. I'm glad you were able to get in on the session today!! MW/SGM has charts where they correlate LANGUAGE acquisition with narrative language. So think about it. If you can't describe or don't understand verbs as individual components in the sentence, it's really stinkin hard to write/say original sentences where you're saying what happened in a book or what the character was like. Your language work and your narrative language instruction will intertwine. The language will *hold back* the narrative and conversely as you do language work you will *apply* it to narrative. So you teach attributes and then you *apply* them to narrative language. You teach functions and then you *apply* them to take him to the NEXT stage of narrative language. The chart is at this link https://mindwingconcepts.com/pages/methodology  It took me a long time to realize that connection. I'm dense, hahaha. But seriously, that's the magic connection.

So four sessions

-SPARC/syntax 

-phonological processing (later morphology)

-vocabulary

-narrative language

And the narrative language work is where you'll get in your warm fuzzies by reading a book together and talking about it. You'll learn about that today. You'll probably realize quickly how to reinforce your language/syntax and vocabulary work during that time too. 

That would be an hour a day and you'd make astonishing progress. You could split it up if you wanted, working narrative on Fridays and two and two the other days, I don't know. Do whatever you think. But those are the areas. I would do the phonological processing daily and syntax as much as possible (only because it's neverending, lol).

If you do this, it will slow down his reading acquisition but it will BRING UP his comprehension, which is more important. It will allow you to make sure he understands every word on the page as he learns to decode. That's the goal.

3 hours ago, Cake and Pi said:

I've discovered that if I get busy busy with the other kids, he will really just sit there moaning, humming, making sound effects, etc. for a couple of hours.

Can you get him diagnosed ASD to get in home ABA hours? It sounds like he would benefit from the interaction. His labels seem so complex and sometimes they will give labels as a way of getting access to services. 

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Any possibility of you getting tele therapy services? You're saying you're driving a lot. I SO get this, lol. Our lives have improved so much during the virus shutdown stuff. Seriously. All our services are now online and we don't waste so much time driving. LOVE online services. They have issues with compliance, him shutting off the mic or camera, etc. But in general, he would have been doing something in the room if he were physically there. It's just SO much better.

Do you have a granny/auntie you can bring in, someone to clone you to up the level of time spent with him? I'm just thinking out loud, kwim? My ds' aunt takes him one day a week on outings and they go to town, work on shopping, eating out, life skills. 

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