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Time: how does one ever find enough?


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There just aren't enough hours in the day.

 

We finally found a source of help with ABA expenses, for which I'm enormously grateful, so dd will get 10 hours per week instead of just 5. Everyone agrees that is necessary. Actually part of the time will be more mental-health than ABA, but in any case, if she can't learn some emotional regulation, she'll have major problems functioning in life. This is her biggest challenge and greatest need.

 

She also has an OT evaluation scheduled next week to rule out sensory issues. This is something I should have done a year ago, but we had to get the ABA in place first, and other things have intervened as well. So now, we'll see about the sensory stuff. That may be another appointment each week.

 

And when do we do school?

 

This is a kid who has very little frustration tolerance and shuts down repeatedly in the course of daily work. So, reading yesterday, the word "necessity" stopped us for over half an hour. She's been tested for dyslexia, has average phonemic awareness, nobody sees any *reason* for reading problems, but the school taught her to read using whole-language method, and she tries to guess at words based on the first letter. When guessing doesn't work she gets frustrated, and she can't handle frustration. Grrrrr!!! And as you see I'm getting frustrated too.

 

It's like this in everything. The essence of some (maybe a lot) of the trouble is that she just doesn't care. She has her special interests, and beyond that, she's really not very interested in the world. No curiosity about the French and Indian War, lol, let alone long division.

 

So there's no frustration tolerance, there's no basic interest or curiosity, she's a slow learner in general unless she's engaged in a topic, and there is *not enough time in the day* to do all the remediation she needs.

 

We have to demonstrate adequate yearly progress. I'm thinking we find an evaluator who understands special needs situations? Have you all found that people understand that, despite an IQ within (broadly speaking) average range, progress may be justifiably slow?

 

How do you find the time to do what you must, or triage without losing too much sleep over what you can't do?

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You probably know about these already, but there are a lot of creative, cool ways to incorporate special interests into learning.

 

But then there are lame, boring ways, and they can work, too.  Like -- just decorating with stickers, or having pictures, or things like that, and having them with the other subject -- it can help.  Maybe it does, maybe it doesn't.  I am just mentioning it, because I do not hear about the lame, boring things as much.  But if it is a high priority, it can help if there are even just pictures or stickers.  

 

I would ask the ABA people if they have any, any ways that they can suggest to incorporate her special interests into other learning.   

 

http://www.amazon.com/Just-Give-Him-Whale-Fascinations/dp/1557669600   I haven't read this book, but I have seen it mentioned on this forum before and people say it is really good :)

 

 

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Thanks, Lecka. Yes, we use all sorts of little rewards. Some are immediate, like chocolate chips after a certain set of math problems, some are more long-term.

 

I've been aware of the Just Give Him the Whale! Book, but I need to order it. We do use that basic idea as much as possible, and there's undoubtedly more I could do. I'll order it today.

 

I find myself getting frustrated because we seem to get so little done. Any little obstacle means we have to take a break, calm down, and lose time. There is so much to do and so little time.

 

We have worked on school during ABA to some extent, but lately they've been doing Zones. A lot of ABA time is also spent on fun activities and games as a reward for getting through the "business" of the day, like the Zones of Regulation. So if the BCBA is here for two hours, they check dd's charts, do a Zones activity, play a game, and that's about it.

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Innisfree, how old is this dc?  At some point we have to admit that the learning of the year IS learning how to work a routine, how to transition, how to stay in ready to learn, etc.  It's not like if we just got Just Give Him the Whale! and were perfect somehow that shazaam our kids would come into our worlds, work, blah blah.  There are a bunch of things that have to happen.  For my ds OT has been a huge part of that.  And it has been this process.  Like neurofeedback gave us 10%, Therapeutic Listening 10%, kinesio taping 10%, and so on. Now he has enough of those layers of things worked on that it's immensely obvious to me how much he struggles with transitions.  Like we have the visual schedules, have all the tools, are totally in on engagement, but transitions are still wicked.  And, like you, it feels like the whole year is a loss for traditional things because we're spending the whole year getting these things dealt with.  But he IS more calm and IS easier to work with and bring into my world.  The fact that more remains doesn't mean we haven't done well.  And I try to make it so that his thing he's stuck on is worthwhile, even if it's not what I would have picked.  So like right now he's memorizing CHOW.  He has had it going for hours.  To pull him out would be a mess.  But he's hitting a 2nd grade goal, even if it isn't hitting an SLD goal.  And sometimes it sneaks in anyway.  Like a couple days ago he spent the whole day listening/watching BJU online heritage studies gr 2 lessons.  Fine.  Wasn't transitioning, but it was fine for what it was.  So then she suggests these extension activities and he's asking me to help him write for a sign for his trading post.  Now we're to good!  Now we're hitting my goals and his.  (I am for a page of writing a day, wide lines, with engagement, with focus.)  He wrote his sign twice, so he hit our goal.  

 

I think there are so many ways to learn content.  In reality, getting to green zone, getting stable, these are foundational.  If he were to max out everything the way, in theory, I wish we could, he would be a really burnt out, joyless boy, kwim?  Like normally at this age you'd do 2 hours a day, and that would INCLUDE read alouds.  Chew on that.  A 7 yo would typically do 2 hours a day of school, including read alouds.  But no, because you have ASD, ADHD, 3 SLDs, SPD, and apraxia you must do 4-6 hours and your life must SUCK, kwim?  That's not fair.  But I can't reconcile that and service as much as I'd like ALL the disabilities AND give him free time AND give him time for social and outtings, kwim?  There's just not time to do it all.  

 

Like you, I have to do either testing or a portfolio review with a certified teacher at the end of the year and demonstrate that he is "performing at ability level."  I don't know who I'm going to use, though obviously I'll pick someone with lots of experience with SN.  At this point I would guess I'll do it with the ASD charter school.  Their people will *get* it.  Remember, the ps would service each area for a minimal amount each day or week.  So if we choose to service some area longer, we're rebalancing the mix.  It doesn't mean it's wrong, but it means we've shifted that.  I don't think it's reasonable for me to say I'm going to service X thing 4 times longer than the ps would each day or week and then also do everything else at that 4X level, kwim?  Kids can't handle that.

 

Anyways, my goal is to set reasonable, achievable small work goals and try to achieve them consistently over the year, not perfectionistically but sort of generally, so that I can demonstrate that even with a sticky situation we've been working.  So independent work 2 days a week is a goal.  Writing a page of something (which for him can take quite a bit of time and involves me dictating the spelling, the letter formation, etc.) 3-4 days a week. Math of some kind each day (4 days a week) is a goal. We lose an entire day to speech therapy btw.  Like seriously, when you say things are a bust I GET it.  I take him to 4 appointments on Thursdays and we lose all day Friday!  But what we do on Thursdays is squeeze things in.  NT kids would do 2 hours of work, and we can actually squeeze that in if we're really conscientious and grab 1/2-1 hour chunks.  It's just not like our more open days where we can just work.  Of course, look at today.  Wide open, so it's easy for him to get stuck, sigh.  So I find the days when we have things to break it up actually can be *more* productive IF we really work it, using the visual schedules, making choices.  

 

I'd love to hear more about your dd's charts.  I went to the Zones of Reg training, but I'd be interested to hear how they're implementing it in your home setting.

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I agree that sometimes the therapy is the learning that has to happen.

 

I would go a step further and ask if it's "too late" to do some general phonics with her, even if it's approached as spelling. If guessing at whole words is making her swirl the drain, that's just as valid a trigger to address as some other issue that makes her swirl the drain. Maybe she needs phonics to stay in ready to learn (and maybe they need to be stealth, like with spelling, so that it doesn't communicate to her that she can't read--that would be a death spiral here in that instance). My ASD kiddo learned phonics, but he didn't "use" phonics for all reading tasks. He got the basic words down and will try to sound out some difficult words if he must, but it's much more efficient, in his case, to just load that word bank with familiarity. He sees a word once or twice, and if he hears how to pronounce it, it's there forever--his memory is very, very good for that. So, we used phonics, but he also used whole language on his own. We spell by pattern, which is partially a phonics thing (we use Sequential Spelling) and partially a habit thing (especially since we type our words and put that muscle memory into typing skill since handwriting is a bear). Spelling is not natural for him, but when he used phonics to spell (in school), he'd get 100s on the test but not remember any of it later, lol! It is what it is.

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Dd is 11, which largely accounts for my frustration. I wish we'd been able to get a diagnosis when we first started trying, years ago, but that ship has sailed.

 

So now, yes, I know intellectually that we have to do the work on emotional regulation and executive function before other things will happen very effectively. I do have that as the first priority, and I think everyone who deals with her closely can see the need.

 

But at the same time she's in fifth grade, logic stage, almost middle school, and I have a hard time not freaking out over where we are. I *know* this is counterproductive, but--

 

my gosh, on bad days she can still get mixed up and forget that she shouldn't subtract the top number from the bottom. On good days, no problem. And then there's reading, and spelling, and writing.

 

Yes, we have done phonics until she is sick of it, but she's never *cared*, and it hasn't stuck very well. She thinks her reading is just fine. She's perfectly happy to read for pleasure (which she does, a lot), and just skip or guess at words. She gets very frustrated with me for asking her to slow down, work at separating the syllables, and sound out the word. I've started literally paying her for each word she sounds out, and we're having our best luck yet because it motivates her to put in the necessary work. Her bank account is getting pretty healthy, lol, but it helps.

 

Kbutton, I have ordered Apples and Pears, we're starting spelling over from the beginning, so I hope that will carry over and help with reading too. And like you said, once she knows a word, she does remember it pretty well.

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I've started literally paying her for each word she sounds out, and we're having our best luck yet because it motivates her to put in the necessary work. Her bank account is getting pretty healthy, lol, but it helps.

 

Kbutton, I have ordered Apples and Pears, we're starting spelling over from the beginning, so I hope that will carry over and help with reading too. And like you said, once she knows a word, she does remember it pretty well.

 

Bribery is a great tool!

 

:grouphug: , it sounds like you are doing a good job. It's hard to not see as much coming out as the effort we put in would suggest. I would keep trying and prioritize behavior as much as you can live with. It will help with upcoming biological changes, I think. 

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OhElizabeth, the charts are not really that much help. I think we've overdone them, actually.

 

Most important are the sheets of data for ABA on her behavior, both positive and negative. We track how often things happen, the BCBA plots it all on a graph, and hopefully the negative behaviors diminish over time, though they haven't really done so yet.

 

Then there's a chart that shows how many school subjects we've gotten through each day, with a small reward for days when we get everything done.

 

There's also a chart for days she gets through while avoiding the worst behaviors we're hoping to extinguish. Good days earn more rewards at the end of the week.

 

The trouble is we're experiencing chart fatigue, I think. There's too much to keep track of, and too many rewards getting handed out. Dd wants too many rewards that I'm not willing to give her, like lots of sodas for example, so she gets mad every time that comes up. We're already relying on chocolate chips for math, and $0.25/word she sounds out (maybe 4 to 8 words a day). It all just gets to be too much, but this is the only way we've found to motivate her. She gets to play games during ABA as a reward for getting through her Zones activity or whatever else they're doing.

 

Unfortunately the BCBA did not go to the Zones workshop after all, so she is probably less familiar with that than you are now. She does say she likes the program, but it's all brand new to her.

 

Anyway, thanks for the sympathetic ears, everyone. This has been a tough day. I know we just have to keep on going and do what we can, and slowly we'll make progress.

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"Upcoming biological changes": oh, you have just chilled me to the marrow of my bones, lol! Talk about scary thoughts! Yes, this is actually something I've been thinking about a lot lately.

 

;-) ;-) ;-)

 

Me too. My ASD kiddo is 11 also. And he's the one for whom rewards become a double-edged sword with my name on it. It's been SO HARD to come up with a plan that works for him and doesn't end all sanity as we know it.

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Me too. My ASD kiddo is 11 also. And he's the one for whom rewards become a double-edged sword with my name on it. It's been SO HARD to come up with a plan that works for him and doesn't end all sanity as we know it.

 

Did I mention that he is a calculated negotiator? Potty training: "What do you mean that you want me to pee in that thing to get a balloon? You gave me a balloon last time. Now I want two balloons and a matchbox car." Sometimes we just have to find something he doesn't like as an alternative to not doing what we want him to do. I don't remember what we did for potty training. He was old enough and had actually tried to potty train himself at one point (long story why that didn't work), so we knew he could do it. I think we pretty much called his game and told him that he needed to use the toilet and he better get over it if he wanted to do fun, big boy stuff. Oh, and he used cloth diapers--we got Buzz Lightyear pullups, which felt different that his cloth diapers. They turned cold if he peed, and we told him he shouldn't pee on Buzz. Forgot all about that...sorry to digress.

 

Negative reinforcement was our only tool for a long time because he has so few currencies that work, and he can manipulate them easily enough to make them invalid sometimes.

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Dd is 11, which largely accounts for my frustration. I wish we'd been able to get a diagnosis when we first started trying, years ago, but that ship has sailed.

 

So now, yes, I know intellectually that we have to do the work on emotional regulation and executive function before other things will happen very effectively. I do have that as the first priority, and I think everyone who deals with her closely can see the need.

 

But at the same time she's in fifth grade, logic stage, almost middle school, and I have a hard time not freaking out over where we are. I *know* this is counterproductive, but--

 

my gosh, on bad days she can still get mixed up and forget that she shouldn't subtract the top number from the bottom. On good days, no problem. And then there's reading, and spelling, and writing.

 

Yes, we have done phonics until she is sick of it, but she's never *cared*, and it hasn't stuck very well. She thinks her reading is just fine. She's perfectly happy to read for pleasure (which she does, a lot), and just skip or guess at words. She gets very frustrated with me for asking her to slow down, work at separating the syllables, and sound out the word. I've started literally paying her for each word she sounds out, and we're having our best luck yet because it motivates her to put in the necessary work. Her bank account is getting pretty healthy, lol, but it helps.

 

Kbutton, I have ordered Apples and Pears, we're starting spelling over from the beginning, so I hope that will carry over and help with reading too. And like you said, once she knows a word, she does remember it pretty well.

Ok, that probably explains what is going on.  My dd's brain totally left her shoulders at that stage.  Seriously, like she would look at the math and tell me 3+4 was 5, and you're just WHACKING YOUR HEAD...

 

I suggest extreme patience.  On top of SN, you have puberty.  Feed her more, give her more rest.  Jessie Wise puts it: Take a shower, take a walk, take a nap, have a sandwhich.  If you work through those, probably whatever is going on will improve.  We had to do a LOT of that for a few years.   :grouphug: 

 

Ok, things you don't want to hear.  One, you have more going for you than you realize.  My guess is the decoding is from something else.  If her private reading is fine and on grade level (is it?), then I'd just leave her alone on that.  With my dd the decoding funkiness was connected to her working memory *and* it was part of her vision problems.  We got her VT (vision therapy) and she started decoding on her own.  Her working memory was skunky low and, when paired with her very low processing speed, was just making life really hard.  We did metronome work per Heathermomster's protocol and paired working memory work with it.  That, plus typing incentives, is when her writing took off.  

 

So instead of working on the decoding, you might work on whatever *else* you can around it.  If it's not bugging her and if she's not clinically low (per a CTOPP), then I'd work on other things.  Improving working memory will actually improve her life.  Does she type?  I'd work on that.  If she reads comfortably, can get her thoughts out (with typing or dictation software), and is still interested in learning something, anything, you've got some good things going.  A lot of the rest won't matter.  It won't matter which science she did.  This is really the age where you start to see who in the world they really are.  Maybe she's growing so much she's going to pull into her shell, start to learn in other ways, and come out the other side, after puberty, really interesting.  Give her some room for that, kwim?  I think if she has ASD and needs social skills work, that's important.  That's mandatory, whether she likes it or not.  But a lot of other stuff (which science program, outline this, read that, blah blah) isn't really going to matter.  It's just not stuff worth fighting over.  Listen to the dark secrets of the board and hear the whispers.  Kids survive without the education we wanted to get them.  Make sure she gets the things that are most important and let go the rest.

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"Upcoming biological changes": oh, you have just chilled me to the marrow of my bones, lol! Talk about scary thoughts! Yes, this is actually something I've been thinking about a lot lately.

 

;-) ;-) ;-)

You're probably already there.  The throes start several years before Aunt Flo.  She may not become human again till she's 14.  Seriously.  Then it's like a LIGHT SWITCH!

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Okay, a few more thoughts and questions.

 

OhE, did the OT do the neurofeedback and Therapeutic Listening? I'm glad we have that appointment next week, that may be important.

 

Private reading is on grade level, as long as you're not picky about whether she can actually pronounce names of characters and places so that anyone else will recognize them. Familiar words she gets, but not new things she needs to sound out.

 

Her pleasure reading is also limited and repetitive. She's going through Harry Potter and the Warriers books for the umpteenth time. For me, though, she's read Because of Winn Dixie and Shiloh, and has started Julie of the Wolves.

 

Working memory and processing speed are ok, and the CTOPP was average. I have wondered about tracking problems, and may get to a COVD screening, but given what I know about the rigors of vision therapy and her frustration tolerance, that's not an avenue I've gone down yet.

 

The thing about reading is, it doesn't matter except socially if she doesn't pronounce the names of Harry Potter characters properly because she wouldn't slow down and figure them out. (Though social things are really a big deal, especially for a kid with ASD.) But then you get to history and science content and over the long term, if not right now, I feel like she needs to be able to deal with the terminology she comes across.

 

But I don't know what her life will hold, in terms of future education. You're probably right that we'll see who she'll be more clearly in a few years.

 

Puberty may be here. She's been sleeping an awful lot lately. But I'm also concerned that her SSRI may not be working any longer. It was like a miracle drug when it was prescribed in the spring, but her developmental ped had to increase the dose about two months ago, and now she seems to be heading downhill again. We've had major meltdowns each of the last two days.

 

And the elephant in the room is that last winter, after we got her ASD diagnosis, we went through the SN process with the local school hoping they had some suitable program for her. They approved her for special education, but did not really have a good situation to put her in. So she's still home, but with an ISP rather than an IEP, and the school is (very loosely) overseeing her progress. They don't *do* anything with her, but we have goals she is supposed to meet. That just adds another layer of pressure without giving any assistance. They were very nice, and try to offer suggestions, but that's it.

 

I think I may try going with her interests more. It would be interesting to see where that would take us.

 

I appreciate all the food for thought here. I'll be mulling it over.

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A lot of people re-read books, and my ASD kiddo does it to a bit of an extreme, but we just rotate with new books. His old books are like friends--it's not so much that he's stuck, he just enjoys them. He also gets more out of them upon re-reading in spite of fantastic reading comprehension.

 

I would consider a couple of things--maybe work people and place names into so pre-teaching on history and geography lessons. Same for science. In the long run, you might be able to use a program like Science Roots for vocabulary to help with that (it's for HS). http://cathyduffyreviews.com/science/science-roots.htm My son likes the regular Vocabulary Vine program, and this one is set up similarly. (My son is a self-starter for this, so ymmv, or you might have to do it together.)

 

My son handled VT pretty well--the therapist makes all the difference. He had a really, really good therapist that made him feel like a rock star.

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Are you legally able to dump the ISP situation and go back under full homeschooling laws?  

 

Kids with ASD can have naming issues.  It can make history and anything relying on names really pesky.  I mean, think about what you're saying.  History/science names/terms aren't working, character names in books aren't working, etc. etc.  On one level it probably is the working memory and ability to break them down, like you're saying, but also there's just that reality that maybe they aren't on her reality, part of her brain, part of what's going to stick.  There are worse things.  

 

The world moves on without history.  My two cents would be to dump history study (of a typical kind) entirely and go only with interest led. And then don't make it like ok you pick your history book.  More like ok she's really into kazoos, so we'll get a music course or study reed instruments and the lives of famous kazoo players and watch videos by Smithsonian on their kazoo collection (I'm making this up).  In this way, taking whatever she actually IS interested in, some history sneaks in.  Then, because it actually MEANT something to her, it sticks and becomes a peg.  And pegs are classical/WTM.  Therefore, when you do interest-led, even when it DOESN'T LOOK LIKE HISTORY, it's still creating the pegs.  

 

That's the WHOLE THESIS of WEM btw, SWB's other book that people seldom discuss.  People get all stuck on WTM, but actually WEM can fit our kids much better with the idea that ANYTHING studied can create pegs and a way to frame and process the world.  It's ok to frame the world around kazoos rather than the exploits of dead white men.  Really, truly.

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Yes, kbutton, I wouldn't mind the rereading if she were just a little more willing to add a few new things to the mix!  :lol:  :lol:

I loved (still do) rereading favorites too. 

 

I use the summer reading program to get him to read new books, so most of his new reading takes place then. Our library has good prizes and a drawing for cool prize baskets and stuff as well. They give away some Kindles each year too.

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She may be rereading to improve her reading speed.  You might also notice if there's a font size issue.

 

The COVD doc can just do a regular annual visit (in our area $60) and screen for the developmental stuff.  It would give you some information.  I agree with you that it takes a really special therapist if you're actually going to do VT and that you'd want to make sure of that before you started.  Our place had info nights and would let you meet a therapist and doc and ask your questions.  Some places will let you tour.  Once we found the therapist that was a good fit, we never changed.  

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Innisfree---your post really resounds with me. We're in a similar boat.  There really isn't time to do it all. I start to get panicky and then I remember that we are just on a different path with this kid. We are.   We have to meet the kid where they are at and if they don't have the skills to do higher level work, they just don't.  It doesn't mean that they are doomed for the rest of life, it just means that today they are not doing the same things as their age peers.  It's not fair to my kid to shove a ton of work on him to try to get him to "catch up".  

 

I'm no longer panicking about math. If this kid can use a calculator, I'm not going to freak if he can't remember his subtraction facts.

I'm no longer panicking about handwriting. If he can fill out a medical chart, sign his name, and do other necessary writing, we're good.

I'm no longer panicking about history.  If he has a general flow of history, and can identify the US on a globe, he's doing better than a number of kids.

I'm no longer panicking about science. If he has the basics, we're good.

 

Seriously.  I thought about this kid from the perspective of the average community college student, and the biggest issues are going to be the executive function and emotional regulation ones.  That I need to work on.  Skills > content.  We both have more than a few years left with our kids at home, and we've still got time.

 

Ok, hope that helps you, but that's me talking myself off the cliff here at the end of my lunch break....

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Re: the shut downs....try to just do 5 minute mini-lessons for a bit and see where it gets you. Also, stop and take a 2 minute break during shutdowns.  I'm amazed at how just STOPPING and taking a break at the first refusal helps keep everything from escalating. The recovery time is a lot faster.  Are you doing sensory/physical work several times a day regardless of whether sensory issues were ruled out? You might give it a go and see what happens.....

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Prairiewindmomma, you are absolutely right about both the short lessons and the physical breaks. Usually dd walks her dog a few times each day. It may not be coincidence that we had a couple of lousy days when it was rainy.

 

All of you who have said to just relax and have reasonable expectations and stop fretting are also right. Somehow the message has sunk in today. I let dd watch documentaries, we read a bit of history, she did a bit of math, we had ABA, and we had a good day. She took the dog out, and she saw a friend. It was good. Thanks for talking me down.

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This all sounds very familiar. I have an 11 year old spectrum, ADHD, low-ish IQ/slow learner son.

 

I hit chart/tracking fatigue quite a while ago!

 

We'll be starting 5 (I think) hours a week with a BCBA, but once a huge lawsuit settles, that BCBA will be hiring a tutor for an additional 25 hours a week.

 

Then we have a full day of OT (she'll be doing some listening program next month), PT, speech, and brain training. The drive round trip

 

He also has drum lessons, band, and Young Marines.

 

The SLP was supposed to be keeping sessions functional by incorporating some language arts and young marines stuff, but she's not. She's also not filling in gaps. She's insisting on doing grade level stuff, and that adds more homework.

 

The OT was supposed to be working on handwriting by using his school work, but again, it's not happening.

 

My current freak out is that he has no spelling outside of a few frequently used words. He still leaves out vowels on the rare occassion he tries to spell something.

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It sounds like you're doing a lot of good things, anyway!

 

Sorry about the problems with the SLP and OT. It is hard to keep various people on the same page about which academic things need to get done. Our contact from the schools who oversees dd's ISP wants to see dd get up to grade level in math this year, and I'm just not sure that's ever happening, or is even very important. If that relationship becomes too troublesome I may see if I can sever it.

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