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9 minutes ago, PeterPan said:

And see to me, having it work for both the provider and the dc is collaboration. That's appropriate. And behaviors because language isn't getting it through, yup expected.

But like we started with a new SLP and I BEGGED her to use a break card, just put one on the table. Two hours later, zero breaks, zero use of a break card, and kid flipping out.

SLPs are NOT trained to work with ASD. They're developing a new certification for SLPs to work with ASD and it's totally pissing the community off. Sorry, but you ought to see the fur flying. Some are like this is awful, you're making SLPs do ABA and ABA is so horrible. And then other SLPs are like hello, therapy done correctly IS like ABA if you knew the principles of ABA. Not the extremist stuff and aversion and mind control but just the basic concepts.

Whatever. But I'm right there right now. I took a break card in and was like ds hand this to her, USE the stupid break card. Intervention specialists are not learning enough to do everything being demanded and SLPs are not. The OTs are being told to get phds and even then they don't know enough.

So, ya know, do it yourself. No they can learn, but we have to be really careful.

 

It's got to be pretty hard for them to adjust to using a social/emotional/actually respectful model when they're working from the medical model. 

(Ha! Did you see me displaying empathy just then?)

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9 minutes ago, Rosie_0801 said:

victim

I think this sense of being a victim or being bullied is pretty common. 

Part of the antidote (and this is more just for op) goes back to that self-advocacy and problem solving. When our kids can say how they feel and know what they want and have the language (or other means like AAC), they can learn to PROBLEM SOLVE. It's a really hard thing. Like me, I'm a pretty spunky/nasty/feisty soul, but sometimes I have to stop and ask why I'm allowing myself to be bullied or feel bullied and what I can do about it. 

So yeah, whether it's kids or adults with business interactions or whatever, it's always an issue.

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1 minute ago, Rosie_0801 said:

 

It's got to be pretty hard for them to adjust to using a social/emotional/actually respectful model when they're working from the medical model. 

(Ha! Did you see me displaying empathy just then?)

LOLOLOLOL There's this really nice russian expression for this... NOW you understand. 

Like yeah, an SLP doing social? Really? They do it, but their vision, their understanding of the issues is SO small, so limited. And there's this constant infighting between the SLPs and BCBAs, with turf wars. 

So I'm arrogant and nasty and I don't like most therapists. I just have a really bad attitude about it, kwim? Like I know more, I'm better researched, blah blah. But sometimes I get over myself and I USE them. It's business. I pay them, they do something. It's something I didn't have the time or energy or skill or whatever to do. 

Variety can be good too. Imperfection can be good. Like sometimes I hire imperfect therapists (cuz ain't none perfect) and I just roll with it, kwim? 

Sometimes I hire therapists for reasons that have zero to do with the therapists. Like right now, we're working on waiting skills. He has a goal in his IEP and that's why we go. I drive 40 minutes there (and forget to give him anything to entertain him in the car), drop him off early (so he can wait and self-advocate with the secretary saying who he's there for, etc), show up late (oops), and then have him WAIT while I talk with the therapist.

I don't care a jolly fig what they did in the sessions, because that WAITING before/after was the real reason. 

So at that point, it's just damage control, like don't put him with someone who stresses him out so much that he can't accomplish the real reason we're there (working on waiting). As long as he comes out calm, I don't care.

Oh, and after a solid year of working this, he FINALLY is like oh I can't use your stupid green zone waiting tools because (drum roll), I'm coming out YELLOW ZONE.

Snort, cough, oops, scream.

So then we make a YELLOW bag and are like what are you going to do to get to green zone so you can use the stupid green zone bag and wait? LOL

I can't remember now if this is our 2nd or 3rd year of that. It's music therapy. Actually we're in our 3rd year. So 2 1/2 school years to get THAT level of self-awareness and self-advocacy.

But it's real, it's deep, it's solid, it's his.

So hire people that you think are good for your kid. To me, I look for good people and then let them do what they're good at. I do what they're NOT good at. I don't compel them to be something they aren't or do what they're not good at, kwim? 

That's just your tip of the day for using workers. :biggrin:

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3 minutes ago, PeterPan said:

I think this sense of being a victim or being bullied is pretty common. 

Part of the antidote (and this is more just for op) goes back to that self-advocacy and problem solving. When our kids can say how they feel and know what they want and have the language (or other means like AAC), they can learn to PROBLEM SOLVE. It's a really hard thing. Like me, I'm a pretty spunky/nasty/feisty soul, but sometimes I have to stop and ask why I'm allowing myself to be bullied or feel bullied and what I can do about it. 

So yeah, whether it's kids or adults with business interactions or whatever, it's always an issue.

 

The impression I'm getting on this journey through life, is that we are supposed to behave as though we have Stockholm syndrome with and towards pretty much everybody. 

And they wonder why we won't play nicely at parties. *shrug*

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7 minutes ago, PeterPan said:

So yeah, the kitchen table is out. That doesnt give you environmental control.

You mean her BEDROOM? That's bad on a bunch of levels. He's really spot on about needing a room. We converted a bedroom. But that's really crunchy psych for you to be in her room. Where does she break when she's overwhelmed??? 

I'm really serious there. Stop, think. When she needs a break, where does she go? You HAVE to protect that. She HAS to have safe places to go. 

So what would be ideal probably, in that situation, is to find a small room with *proximity* to the kitchen. I would do ds6 in the kitchen and do labs and life skills in the kitchen. Everything else for dd7 goes in her dedicated office space. I don't know where you're going to carve it, because I can't see your house. Ideally it would be within eye shot, like around the corner, from the kitchen. Do you have a pantry you could convert? A bedroom or half bath? 

I don't know. Think about what you've got. If you need to, you could combine the kids in one bedroom with bunks and make that room an office. That's a lot of change. Think about what you've got. 

It took a while for my dh to get on board. Actually, he never got on board. It was really hard to admit that ds was going to need these changes. And really, *I* am not a cooped up, go in a room to do school kind of person. He thought *I* wouldn't stick with it, kwim? It took me a few years to realize *I* like how I get treated when we use an office and I DON'T like how *I* get treated when we don't. So that ends the discussion, kwim? 

There's a lot to a physically dedicated space. Think about what suits her, talk with her, ask her for ideas. Tell her you're trying to set her up an office and ask where she thinks it could be. Some people will put up a screen and use the corner of a room. My ds does better with clear environmental control, a room. We converted a bedroom, maybe 10X13 I guess. 

 

Hmmm. I'll have to ponder this. Our house is very small, there are zero extra spaces. I think your converted office is bigger than our master bedroom. lol Her bedroom is set up the way she likes, and her bird is in there which she loves. She would hate sharing a room with her brother. When she (or anyone) needs a break we go outside or to our rooms. The kids both spend a lot of time outside; there's a fort and swings, climbing dome, pots and pans, etc. Her spot is hanging upside down on the dome.

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1 minute ago, Jentrovert said:

 

Hmmm. I'll have to ponder this. Our house is very small, there are zero extra spaces. I think your converted office is bigger than our master bedroom. lol Her bedroom is set up the way she likes, and her bird is in there which she loves. She would hate sharing a room with her brother. When she (or anyone) needs a break we go outside or to our rooms. The kids both spend a lot of time outside; there's a fort and swings, climbing dome, pots and pans, etc. Her spot is hanging upside down on the dome.

 

Well, if no one is chasing her up the dome, working in her bedroom is probably fine.

We have a very small house.  When dd is here, she does her independent work in her room and collaborative work on my bed. 

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27 minutes ago, Jentrovert said:

I plan to try it, although in general she prefers to be with people. But she may decide she prefers to do some alone (actually, with her bird, she'd probably love that).

So you've got a lot to unpack there. The bird could be great or a distraction. Our behaviorist suggested we *not* put a pet in the room. I thought it would be motivating, and she's like no it will be a distraction.

But going to see the bird would be such a stellar BREAK, kwim? Write out all the BREAKS she can take!!! Make a list of them and work toward them. 

So if your list has 10 things (each 5-10 min), then you might intersperse 3-4 planned breaks. You can even do DOUBLE breaks. So break 1, break 2, back to back. But break 1 is out of the office and break 2 is back in the office. That gets you a smoother transition.

Did I just rock your world? Make sure you see that, because that's some serious money there. :biggrin:

They have to be pretty high value, preferred things. Maybe innovate a bit and be creative. Like with my ds, they wanted to work on modulation, being gentle, so they would have a break with throwing things (his idea of a great time) but shake up what we were throwing (cotton balls). You can be creative like this and hit a goal in breaks. 

So the alone thing is tricky. Soon enough she'll be alone. It's good that she's socially motivated (my ds is, people comment on it, it's GOOD), and she has SLDs. So it's not realistic for her to go forward with skills without interaction. Only work she's already proficient at will be INDEPENDENT. So it's ok to work on independent work, but it's not the goal for instruction. 

Sometimes independent work is staged. There are swankier terms. Like independent as in we start it together and you have two left on the page to finish while I go work with brother.

It's going to take work to set up her office, and it's going to take work to PAIR the office with good things. And then it takes work to build independent work skills in there. But again, this is not instructional. We're talking more like CAN YOU BUSY YOURSELF. Odds are it's actually wicked hard. So you can collaborate or just flat try things to see what works. Like not try as in plop it on her but more do the thing together and see if she's SO proficient at it that she could do it completely independently. 

An example would be listening to an audiobook on the NLS/BARD reader device. If she can operate it completely independently (so long as there's a book), then that could be on her independent work menu. If she can do a 25 piece puzzle COMPLETELY INDEPENDENTLY, then that could be independent work. If you have to sit with her or encourage her, then she's not ready for that to be on the list.

So then you start with very small amounts of time, a timer, and you doing something in the room while she does her thing. High support, brief amount of time. And you build up and stretch.

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10 minutes ago, Rosie_0801 said:

When dd is here, she does her independent work in her room and collaborative work on my bed. 

I love this, and I love that it WORKS. 

I think for my ds it's that combo of the anxiety, that EVERYTHING seems hard, on and on. And well his support level is 2. I mean, 2=significant support. 

But I'm with you that op can find what will work for her and what that looks like. And you know, make data, see if it works. I've made SO many mistakes. I should be paid for my mistakes. I'm so good at making them. 

I lie to my ds a lot, bluff, and just generally smooth things over. It's only a lie in that of course I'm perfect and going to get it right. But since I don't, I say mess like "we're going to TRY this" and "things might go wrong because it's our first time" and all kinds of mess like that. 

Does that mean I've become a smooth talker? Hahahah I did it for our first cruise too. I just make up any kind of stupidity to smooth over that mess ups are going to happen. Like I told him we might not like any of the food but that they would have bbq. Turned out he liked the food fine and *I* as the one who thought it was really inferior. LOL Go figure.

But you know, that sort of fake it till you make it has made me more calm. It helps me too. :biggrin:

I think I'm trying to let op channel a bit here. Don't put expectations on yourself to do this well. Tell her you're going to flub up and let her expect that. Talk about it, collaborate, problem solve together. You'll be MODELING the flexiblity you want to see. 

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15 minutes ago, Jentrovert said:

 

Hmmm. I'll have to ponder this. Our house is very small, there are zero extra spaces. I think your converted office is bigger than our master bedroom. lol Her bedroom is set up the way she likes, and her bird is in there which she loves. She would hate sharing a room with her brother. When she (or anyone) needs a break we go outside or to our rooms. The kids both spend a lot of time outside; there's a fort and swings, climbing dome, pots and pans, etc. Her spot is hanging upside down on the dome.

Hmm, makes a lot of sense. You can talk with her about it and collaborate. It's not necessarily a wrong choice. You just try something, make data, see what happens. My ds is outdoors a lot too, but he also uses his closet. Once we got him a softer bed, he started using his bed more instead of the closet. 

I think just roll with it, see what she thinks. Does she want *you* in her room? How will that make her feel? Ask her? And maybe give her time to think. Like give her the heads up that the question is coming, and then when you have the discussion say you'd like her to take a week to think about it, kwim? Like maybe she could give you pros and cons. 

I just know *my* ds would be very stressed if we were doing intervention level work in his room. But he LOVES the idea of having a computer in his room, etc. 

Keep thinking. You could definitely try it and make data. But do something really realistic, whatever definitely is working well now. 

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1 hour ago, Rosie_0801 said:

Also, learn to narrate life to her. Like you did when she was little with "oh, look, there's a snail!" but the social-emotional stuff.

Yep, until you're sick of your own voice. 😉 If I didn't provide context, my son would balk at just about everything. If I explained the rationale for something, it helped a great deal. 

1 hour ago, Rosie_0801 said:

We don't like being treated like second class citizens and that makes it hard for us to learn to behave appropriately submissive.

This is likely the case even if relationships have not been overly coercive--it's just not something that makes sense to a lot of people with autism until they see a Why behind it. My son started to see the point of certain kinds of limits/authority when he had a younger sibling because he could see that we did things differently for the baby to keep the baby safe or because the baby was small or because the baby couldn't do xyz yet. It was a huge revelation for my son and a huge help for us. My son noticed his second-class status and objected to it before he spoke in sentences, lol, so when he realized that we were doing things to keep him safe and help him out like we did for the baby, his whole demeanor changed. 

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45 minutes ago, kbutton said:

This is likely the case even if relationships have not been overly coercive--it's just not something that makes sense to a lot of people with autism until they see a Why behind it. My son started to see the point of certain kinds of limits/authority when he had a younger sibling because he could see that we did things differently for the baby to keep the baby safe or because the baby was small or because the baby couldn't do xyz yet. It was a huge revelation for my son and a huge help for us. My son noticed his second-class status and objected to it before he spoke in sentences, lol, so when he realized that we were doing things to keep him safe and help him out like we did for the baby, his whole demeanor changed. 

 

Yeah! This is exactly the sort of stuff I meant about narrating the social-emotional stuff. 

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10 minutes ago, Rosie_0801 said:

Yeah! This is exactly the sort of stuff I meant about narrating the social-emotional stuff. 

A couple more things then, in case it helps.

By 9 months, my son would not sit in his carseat unless I told him where we were going. I felt like a crazy person explaining things to such a tiny kid, but it was exactly what he wanted to know. Other things were inexplicable at the detail level, and we just had to find ways to modify situations/routines/products in a way that made it look like we were trying to treat him equitably--so getting kid items that looked as realistic as possible was important. Unless they had Elmo on them--then they were even better, lol!  🤣

Other things that helped would be telling him how long stuff would last in terms that meant something to him, like, "This will take about the same time as one episode of such and such a TV show." Just be sure if you use a show, you realize that some shows have two stories in one episode, so make sure you both know what you mean by episode.

We also found that the sense o' justice meter was tripped when things weren't logical. My son was baffled by needing to apologize if he did something by accident, such as bumping into someone. Saying sorry was, in his mind, for when you were mean or did something on purpose. If something is still illogical, it's often a good idea to just say that it's a rule. It really depends on how much the person understands in the given context already. 

The good news is that once you figure a few things out, it snowballs--you see patterns and start feeling like if your child could be thinking x, then y is not such a stretch from there--maybe y could really be the problem. And you get better and better at figuring it out.

Some kids can't really tell you, but you can read about functions of behavior to see if you can find some insights into the why. They classify behaviors into categories--just realize that the lingo has specific meanings, and it's not meant to be judgmental necessarily. It's meant to kind of help narrow down the possibilities when it's hard to connect behavior to something that did happen or the child would like to have happen. 

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Language disability is a funny thing. Sometimes talking more *isn't* recommended. In fact, with ds they recommended we talk *less* but target our language exactly to his level of syntax. 

If you just want to up language exposure, tv, audiobooks, anything will do. If you want to improve a language disability, you have to be intentional. So pick ONE THING and talk about that ONE THING every time you talk. Like pick *nouns* for this month and play games with nouns every time you feel compelled to talk.

-name all the vegetables you know

-name all your aunts and uncles

-name things that aren't alive

-name things that are green

-name things you'd take on a trip

-name the characters in your favorite book

-name all the bad guys from books/movies

-name all the Disney princesses

-name all your favorite Disney rides

-name all your favorite snacks at Disney

Here's the pdf you need to get started with language work. It won't *contradict* anything the ABA people would do, so you can feel free to start.

http://www.e4thai.com/e4e/images/pdf2/100_vocabulary_primary.pdf

First section is on functions, which are VERBS. So think about highlighting VERBS all day.

-what are all the things you can do with a knife?

-what do you do with a hammer?

-what does a hammer do? (those are different questions)

-what can a cow do? what can a dog do?

-I'm going to CHOP the carrots with my knife. I will SLIDE the carrots in the pot. Do you want to CHOP? (she replies, yes, I want to chop!)

So instead of flooding her with language, you're being very intentional and using your time together to highlight the concept you're working on. You can use that pdf as a spine and flesh it out with games. I added in workbooks from Linguisystems, because of the overkill camp. But if you don't want to spend extra $$, don't! You can take that workbook and flesh it out. Play games where you turn over picture cards (Pickles to Penguins has tons of cards for this) or use magazine pictures you cut out, whatever you've got. Make up games and stories. But work very intentionally, getting her to use what you're working on.

So if you're working on verbs, go through the steps, using them passively (she responds to what you say=receptive) and actively (she uses them). And work them through word level to sentence to narrative

What does a cow do? A cow moos! I see a cow mooing in the field. And then into a little story using pictures, maybe retelling a little picture book focusing on the VERBS.

See how you hit language at the word level, the bits of word level, the whole sentence level, and then at the narrative level? And then when you get the MindWings autism kit, you'll look at the stages of narrative learning and TADA turns out using verbs/actions to tell a story is an early stage of narrative learning! So think about the safety implications of this. When you NAIL this, she should independently be able to say "I went to the park. I ate an ice cream. I rode the twirler and swings." If she can't SAY that, is she safe? No. And there are no advanced narrations till we get this. That's where you start, at the very beginning.

Your narrative language and your language (vocabulary, syntax) instruction will merge. You will see it when you get the charts in the MW ASD kit. 

But when in doubt, that's how you do it. Simple and wacky complex all at once. Not fast. The goal is to get from understanding to doing to doing it in narratives with support and finally doing it in narratives INDEPENDENTLY. 

Watch where you're at and you'll never be confused. That's all you have to do, over and over, haha. It's a game of patience. :smile:

Edited by PeterPan
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I had my ds *read aloud* every single word on the pages of that pdf book I linked. That's 100% Vocabulary by Rothstein and it's oop. I also really like the Grammar Processing Program btw. It's a little $$$, sigh. Really solid stuff. 

Anyways I had him read aloud every word on the page because I was making sure he actually UNDERSTOOD what he was reading. Remember, a child with echolalia is memorizing language whole to parts. So they have memorized a whole sentence "The dog is under the table" and that sentence is NOT being understood at the bits level. Their little brains just can't keep breaking it down to get there. So then, when they try to read other sentences using those bits, they don't really have a solid understanding. They just know what it means in the whole sentence.

So by having him read EVERY WORD, I was demanding word level comprehension, complete comprehension. And the worksheets are nitpicky thorough, so it was super helpful for his comprehension. 

Caveat. Ds was, um, 10 when we did this. But you know, if she's in Barton 3/4, I think I'd just press in slowly, see what happens, kwim? 

Reading comprehension is going to be your biggest challenge in the long run. What I notice is most of these kids with language disabilities plateau. So this is definitely the thing to win on. But yeah, play with it, see what happens. 

And remember, the ABA thing is 10. DO NOT DO THE WHOLE PAGE!!! Don't say I said to do the whole page, lol. We're not into torture here. My ds could never do more than 7-10 on those pages, and he was older. So you have to CHUNK it up. Cover up half the page and put a first/then card in front of her. First we do this page, then we play nintendo. Go buy a nintendo or something that will be super high currency so you have a motivator. Always work toward motivators. Short sessions, clear plan, working toward a reward/motivator.

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27 minutes ago, kbutton said:

A couple more things then, in case it helps.

By 9 months, my son would not sit in his carseat unless I told him where we were going. I felt like a crazy person explaining things to such a tiny kid, but it was exactly what he wanted to know. Other things were inexplicable at the detail level, and we just had to find ways to modify situations/routines/products in a way that made it look like we were trying to treat him equitably--so getting kid items that looked as realistic as possible was important. Unless they had Elmo on them--then they were even better, lol!  🤣

Other things that helped would be telling him how long stuff would last in terms that meant something to him, like, "This will take about the same time as one episode of such and such a TV show." Just be sure if you use a show, you realize that some shows have two stories in one episode, so make sure you both know what you mean by episode.

We also found that the sense o' justice meter was tripped when things weren't logical. My son was baffled by needing to apologize if he did something by accident, such as bumping into someone. Saying sorry was, in his mind, for when you were mean or did something on purpose. If something is still illogical, it's often a good idea to just say that it's a rule. It really depends on how much the person understands in the given context already. 

The good news is that once you figure a few things out, it snowballs--you see patterns and start feeling like if your child could be thinking x, then y is not such a stretch from there--maybe y could really be the problem. And you get better and better at figuring it out.

Some kids can't really tell you, but you can read about functions of behavior to see if you can find some insights into the why. They classify behaviors into categories--just realize that the lingo has specific meanings, and it's not meant to be judgmental necessarily. It's meant to kind of help narrow down the possibilities when it's hard to connect behavior to something that did happen or the child would like to have happen. 

 

Same thing here. Now we discuss that, even though it's not logical, we apologize if we hurt someone accidentally because otherwise they think we did it on purpose. (And, related, we look at them when we apologize, because otherwise they think we didn't mean it.) I look forward to the snowball effect. I kind of feel now as if I'm on the edge of much better understanding.

 

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13 minutes ago, PeterPan said:

.........................................

Here's the pdf you need to get started with language work. It won't *contradict* anything the ABA people would do, so you can feel free to start.

http://www.e4thai.com/e4e/images/pdf2/100_vocabulary_primary.pdf

..............................................

So instead of flooding her with language, you're being very intentional and using your time together to highlight the concept you're working on. You can use that pdf as a spine and flesh it out with games. I added in workbooks from Linguisystems, because of the overkill camp. But if you don't want to spend extra $$, don't! You can take that workbook and flesh it out. Play games where you turn over picture cards (Pickles to Penguins has tons of cards for this) or use magazine pictures you cut out, whatever you've got. Make up games and stories. But work very intentionally, getting her to use what you're working on.

So if you're working on verbs, go through the steps, using them passively (she responds to what you say=receptive) and actively (she uses them). And work them through word level to sentence to narrative

What does a cow do? A cow moos! I see a cow mooing in the field. And then into a little story using pictures, maybe retelling a little picture book focusing on the VERBS.

See how you hit language at the word level, the bits of word level, the whole sentence level, and then at the narrative level? And then when you get the MindWings autism kit, you'll look at the stages of narrative learning and TADA turns out using verbs/actions to tell a story is an early stage of narrative learning! So think about the safety implications of this. When you NAIL this, she should independently be able to say "I went to the park. I ate an ice cream. I rode the twirler and swings." If she can't SAY that, is she safe? No. And there are no advanced narrations till we get this. That's where you start, at the very beginning.

Your narrative language and your language (vocabulary, syntax) instruction will merge. You will see it when you get the charts in the MW ASD kit. 

But when in doubt, that's how you do it. Simple and wacky complex all at once. Not fast. The goal is to get from understanding to doing to doing it in narratives with support and finally doing it in narratives INDEPENDENTLY. 

Watch where you're at and you'll never be confused. That's all you have to do, over and over, haha. It's a game of patience. :smile:

 

Awesome, she LOVES stuff like this; riddles, games, stories. 

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3 minutes ago, Jentrovert said:

 

Awesome, she LOVES stuff like this; riddles, games, stories. 

Yes, and it's not that you have to teach her EVERY verb on the planet, lol. You just have to activate her brain to NOTICE them and realize what they are. Then you can work on tenses, whatever you want. 

If you look at that book, functions=verbs. Categories=nouns. Attributes=adjectives. And so on. ABA will use different terms, but it's the same stuff. And you can make it happen.

 

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https://www.linguisystems.com/Products/31161/sparc-for-concepts.aspx  One of my favorite series of resources. I also like the Spotlight on Vocabulary series. It pairs really well with the 100% Vocab book as the spine.

It is *not* overkill for you to work on these things, to make sure she's actually using articles and comparatives and prepositions and so on in sentences. Getting it into narrative, independently generated narrative, is the biggest win. 

 

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