School evals, counselors & ASD-- would you do this?

[Innisfree]

We're in the middle of evaluations for dd14, in preparation for high school next fall. She's been homeschooled for a number of years.

I've found a book with a great many very practical ideas for accommodations which are very pertinent. Would it ruffle feathers or seem presumptuous to give copies to the school counselors most involved with this process now, at the middle school, and in the fall, at dd's new high school? Or does anyone know if this is enough of a standard work that they are already likely to know it? I know Brenda Smith Myles is well-respected in the field, but counselors can't be expected to know everything, and this is information I'd really like them to have available.

And, in case anyone else is interested, here's a link. 

https://www.amazon.com/Asperger-Syndrome-Adolescence-Practical-Solutions/dp/0967251494/ref=mp_s_a_1_1?crid=3TSE0Z857NZ0D&keywords=asperger+syndrome+and+adolescence&qid=1553803452&s=gateway&sprefix=Asperger+syn&sr=8-1

[Lecka]

I have seen Brenda Smith Myles speak!  She was awesome!  The school district was doing CAPS (or whatever — not googling right now lol) and had training on that at the same seminar.  

I think I would be more comfortable to ask first.  Ask them and see what they say.  Ask them if there is a book they think would help you understand their process, too.  If they already have some system and it uses slightly different phrasing or terminology — it’s good to know that stuff.  

Edit:  it is hard to know — I think it could be great to buy books if they are welcome.  I wouldn’t assume they don’t have some idea of supports — they may or may not.  I think it is good to ask.  

If they don’t have an idea — I think it could be good to buy a book (or welcome) but also share a small amount of information, highlighted to your daughter. 

I have done this and it helps my comfort level, because I think it helps communication about things I may be particularly concerned about.

I think personal accounts of “this works well” are really, really important and welcome. 

In a thick book it’s hard to know if another person is getting the same stuff out of it or realizes how it would apply to a certain child.  

Edit:  I think it is fine to ask things like what they do for autism, how many kids they have, do they use any particular things....

Our old district did CAPS (whatever), they did Superflex, they did “The Incredible 5-Point Scale,” they did this Tony Attwood book of visual supports, etc.  They would be happy to share that and try to get on the same page.  

They tend to love consistency with caregivers, for autism!  Because it is helpful on all sides lol.  

 

Edited March 28, 2019 by Lecka

[Lecka]

I did click on the link, and I know my previous school district loved that book, as far as people working more specifically with autism.  Would everyone in a school know about it?  No.  Would there still be a need to share things with various people?  Yes.  Depending what kind of classes etc a kid is in.

I think if you read and think “ding ding ding” about certain things — definitely share that.  If there are a few pages here and there particularly pertinent — share that.  And see from there about the book.  Just my personal opinion!  And my comfort level.

https://www.amazon.com/Comprehensive-Planning-Individuals-Disorders-Disabilities-ebook/dp/B01LWXHJFO/ref=nodl_

For an example — this book was a framework they used in my previous district for older, more mainstream kids.  It’s what they liked.  

They also liked “autism internet modules” and — as a parent that was a good resource for me to see “what do they mean by this and that,” and see what kinds of things they think of as “evidence-based practices.”  It’s free with a free registration and it’s really good for seeing example of what various terms mean.  

But — I think ask!  See if there is some preferred resource/s they use, and then you can have an idea how they approach things and what some of their terminology means.  

And hopefully they seem to have an idea about things that will be good for your daughter!!!!!!!!!

[Lecka]

I know for my younger son when we moved here  — there is an art to writing the narrative description in his IEP.  

They manage to get in things like “responds well to x, y, z” in a way that tells what he needs help with and what they have been doing to help.  

They manage to do a little “he has these strengths” and “he has these weaknesses” in a way that’s not offensive but also shares some info.  

Lately I have felt like — stuff is pretty clearly covered for him (with reading between the lines kind-of) within his IEP, but before I felt like that (because it was just ———— either he didn’t have it or there was a lot, or there was a long list of available supports but I thought 2-3 of them were the most essential and wanted to make that clear)...... I did want to share specifics and also sometimes some “evidence” that stuff I knew would go well was good to do, and they should do it too!  

 

[Lecka]

I do also think — what’s the worst that can happen if you give them books?  

You come across like an involved parent!

I think that is always a good impression to make.

So I do think “go for it.”

I think it’s part of their job to have parents who want to find out about their mindsets and processes, and this is a way to share your mindset and your ideas about your daughter, and what helps her.  

Edit:  but I do think I have heard, they can be more likely to read something short than something long (depending on things).  I try to be short. 

I also know I have a tendency to be long winded 😉

Edited March 28, 2019 by Lecka

[PeterPan]

You definitely want to read it yourself. There's such a gap between ideal and what's really going to happen. Some of the people on our IEP team are working with high schoolers, and I can tell you they're very strapped. After you read the book, maybe it will be obvious whom it would most help to help your dd? The school already has their gig, and as she hasn't been enrolled they're basically projecting, based on what they see and past experiences with others, what she'll need. So I think the book will inform *you* but make little difference in what *they* are likely to do. However if you read something in there that is clearly applicable to her situation that you'd like to have happen, I would bring that up! And if you find someone who is really helpful and want to converse about the book (hey, I was reading this), that may work about. But no, in my experience, handing people materials that we think are obvious and great does NOT change the intervention and services our kids get. The people are busy and they're going to do what they already know to do. That's what I see across the multiple settings where I've worked with people.

So back up here, are you wanting to give this to the *counselor* in the thought that the counselor will be working with her and use the ideas? Hmm. I was thinking more a teacher. But I need to see the book. The counseling we've done has been a mix. They seem to have their own gig and what they think is important, and they're also rolling with the kid and the moment. 

They may have enough experience that they already know most of the things in the book. It would be a nice thought and it's possible.

[Lecka]

I think it’s a book that has suggestions for supports that could be included in the IEP, when the IEP is being written.  

I do think they probably are set up for some supports to be “go-to” supports for them (common, many people familiar with them, etc).  

But I think they adjust, too.

What I think makes a big difference is placement.  Or not exactly “placement” as a “place” — but a level of support services.  

Some kids do fine with a minimum amount of supports, and then some kids need more.

I think it’s common for many people to be aware of some common, minimum supports and then totally unaware of some more individualized supports.  It’s just not common knowledge because of privacy.

Ime they are so strict on privacy because it can be easy to figure out what kid someone is talking about, sometimes, and if enough is shared that someone can identify a child from sharing certain info — that is a breach of privacy.

I don’t know if I’m explaining that well, but I have definitely seen it.  

Parents are free to share what information they want to share, though 😉

[Innisfree]

2 hours ago, Lecka said:

I think if you read and think “ding ding ding” about certain things — definitely share that.  If there are a few pages here and there particularly pertinent — share that.  And see from there about the book.  Just my personal opinion!  And my comfort level.

There are about 60 pages that talk about a wide range of accommodations and supports.

[Sorry about quote box, I messed that up and can't get rid of it]

1 hour ago, PeterPan said:

 

As I read them I was just blown away that schools were *doing* all those things, because it was so much more than we were offered when we went through this process before. That time we decided to keep homeschooling, because what they were offering didn't seem like enough. But, if we could get a lot of these supports, then life could maybe be different for dd. I could see these things making a big difference for her. I was thinking "ding ding ding" a lot, lol.

I know not everyone is going to get every support. But there are things like a seven-page Transition Checklist for going into a new school. Seven pages.   They say, "The planning process described here may seem extensive and time-consuming. It is! For adolescents with AS, it is necessary that each of the items on the Transition Checklist be considered before the student moves into a new school environment." 

 I'm really just kind of thrilled to read a book that takes all this seriously, that seems to recognize how hard this can be and expects schools to provide support.

So, even just sixty pages is a lot to copy and ask someone to read. The book is more like two hundred pages. I can make notes and suggest certain things, yes. And I can absolutely find out what they are used to doing. But this seems to give me grounds to ask for a lot. I don't want to be pushy, or on the other hand to neglect to push enough, kwim?

I guess it will necessarily be a gradual process. We'll hopefully get some help at first, and then we'll see how things go, and make changes. But the book seems to emphasize the importance of starting with adequate supports.

Anyway, I'll certainly ask if this is a book they already know. I'll see how receptive they seem. And I'll also ask what their established ways of handling things are. 

Thank you for helping me  think this through.

[Innisfree]

1 hour ago, PeterPan said:

You definitely want to read it yourself

Finished that part.

😉

1 hour ago, PeterPan said:

But no, in my experience, handing people materials that we think are obvious and great does NOT change the intervention and services our kids get. The people are busy and they're going to do what they already know to do. That's what I see across the multiple settings where I've worked with people.

This sounds realistic, and a great pity. I hope they're already doing this stuff, then.

1 hour ago, Lecka said:

I think it’s a book that has suggestions for supports that could be included in the IEP, when the IEP is being written.

Yes. This is correct.

1 hour ago, Lecka said:

What I think makes a big difference is placement.  Or not exactly “placement” as a “place” — but a level of support services.

This is exactly what we need to iron out now. I'm hoping and cautiously assuming they'll agree she qualifies for an IEP, because they did before, and we have a lot of documentation. But I do want her to start with enough support in place that things go well. She already is extremely negative about going back to school. I'm anticipating significant resistance, and quite possibly school refusal. So I guess these supports just sounded like they could be very helpful.

[Lecka]

Okay — I think go in with the book, say your daughter has a lot of need for support, you want to give the best start possible, etc.  

Say “this is where we are at.”

See what they say.  

I do think it sounds like she should start with a lot of supports.

Its hard to know because — frankly a lot of parents want stuff but then they don’t want too much, they get scared off, they don’t want their kids to seem different, etc, and sometimes I think school tries to not come on too strong (but I have positive experiences so I realize this varies!).  

I think share with them you think it is needed.

I think if this means “I am looking at 60 pages” then — that is your situation, and I think be up-front about it.  

I don’t think that makes you pushy or demanding, I think that means your daughter needs higher supports. 

I hope it goes well!!!!!!!!! 

You might get the CAPS book I linked, too, to see what can be offered or — what you might show them or what you might ask for.  

Edited March 29, 2019 by Lecka

[Lecka]

I also think — since it sounds like it didn’t get offered before — is there any way you can have an advocate?  Are there any organizations that might have one?  Sometimes there are.  You might ask about any support groups or organizations, maybe ask through any service providers, etc?  

Are you able to go in with a private eval naming some of these supports?

I don’t know what would be good locally but just some ideas.

I think it is good you are starting now for next year!  

[Innisfree]

16 minutes ago, Lecka said:

You might get the CAPS book I linked

Thanks for pointing this out! I'm putting it in my cart.

[Lecka]

Also just FYI — my understanding is that this book is Brenda Smith Myles’s flagship book:

https://www.amazon.com/High-Functioning-Autism-Difficult-Moments-Practical/dp/1942197241/ref=mp_s_a_1_fkmr0_1?keywords=Brend+Smith+Myles&qid=1553856529&s=books&sr=1-1-fkmr0

It’s hard to know what would be repetitive from the book you already have, but it’s got a new version with updates.  It updates her book about “Aspergers and difficult moments” which has all kinds of strategies for older kids, and was her flagship book at the time I saw her speak.  

Also when I saw her speak, this is the book they had out for teachers who maybe wanted something shorter. BUT it is for all ages and might not be right for your daughter’s age.  But just to say — it’s what they had out.  

https://www.amazon.com/Strategies-Educators-Students-High-Functioning-Disabilities/dp/1931282994/ref=mp_s_a_1_3?crid=1SQYOQ6AT9INA&keywords=brenda+smith+myles&qid=1553856771&s=gateway&sprefix=brenda+smoth+&sr=8-3

The book description says it is 40 pages 😉

I saw a lot of people buying it, though!  It was very recommended among the people there (the conference I went to had a lot of service providers and school employees).  

I don’t know, but I suspect from looking at the covers that the CAPS book is an update of the book you linked.  I don’t know — it could have different content!  But it is very possible, because it has an older-looking cover, and she has had a long career.  

Edit:  the book you linked is from 2001 and the CAPS book is from 2013.  But I don’t know if they have all the same content.  But I bet between the updated CAPS book and the updated “difficult moments” book — there would be updated versions of the content from the book you linked.  

It is very hard to search for her books on Amazon because she is not always the lead author (?) and it doesn’t list her, and other times it looks like she has written a book but she just wrote the introduction.  

Edited March 29, 2019 by Lecka

[Lecka]

https://texasautism.com/WorkshopFiles/rage.pdf

I googled and this looks like a power point presentation from Brenda Smith Myles.  This is the kind of thing I saw when I saw her speak.  

To be honest I didn’t attend the CAPS session, i attended her “keynote” session which talked more about behavior supports.  

A lot of times there are kind-of two categories with autism:  one is more behavior support, and one is more teaching strategies.  

The stuff I am linking is more on the “behavior support” side.  

If the supports you are liking in the book are more “teaching strategies” then the things I have linked won’t be what you are looking for so much.

There is also a big overlap of “teaching strategies to teach behavioral strategies.”  

But if you are looking more for strategies for teaching academic content ———— I don’t know if that is what she is known for. 

She is very known for behavior supports and teaching behavioral strategies.  

It does all go together, but there is also a point where — a shutdown learner is not going to be doing any learning, so you do have to work on the shutdown part if anything else is going to get done.  

Also here is how it was where I used to live:  the district I lived in had good programming.  A woman had sued them and also talked a lot to the school board etc etc and they had some good things.  Well — in surrounding districts people had a choice:  either fight and fight for the same things, or move into the district that already had it.  But then our district was doing things to help other districts in some ways, because really it’s not like people “want” families to move over things like this.  But it is just a process.  This is how it was where I lived, though.  One district was sending tones of employees to see Brenda Smith Myles speak, and another district might not send anybody.  

People would say comments like “look for a district where someone on the school board has a grandchild with autism.”  A neighboring district supposedly had a really nice (better than ours) program for Down Syndrome for that reason.  And then I think someone on our school district may have had a child with autism?  I’m not sure.  

It is so frustrating when it doesn’t seem like there is equity within special needs let alone equity with other areas.  

But in that area, there would be big differences in different districts that might be otherwise very similar and not too far away from each other.  Or a school district that is otherwise not seen as being as good may invest more in some autism-related programs.  

There, this was something a lot of service providers would have been familiar with, because they would go to state-wide conferences or to trainings or whatever and meet people and hear things.  

I met people from a fairly nearby school

district at another autism-related event, and it seemed like there were a lot of kids getting no school supports but then being prescribed a lot of drugs (which I would say some kids took in ours, but fewer, and kids taking them *definitely* had supports).... or else they would let them work on computers all day and not interact with anyone.  And then — I know ours did have computer options and “study carrel” options for kids who needed a lot of quiet — but it wasn’t like they were just not going to address other things.  

 

[Innisfree]

Thank you! The original Difficult Moments book is one I was looking at yesterday online. I remember reading it a few years back and thinking it was helpful, but didn't buy it, so I might get the new one. I'll check out the shorter teachers' book also.

[Innisfree]

15 minutes ago, Lecka said:

lot of times there are kind-of two categories with autism:  one is more behavior support, and one is more teaching strategies.  

The stuff I am linking is more on the “behavior support” side.  

If the supports you are liking in the book are more “teaching strategies” then the things I have linked won’t be what you are looking for so much.

There is also a big overlap of “teaching strategies to teach behavioral strategies.”  

But if you are looking more for strategies for teaching academic content ———— I don’t know if that is what she is known for. 

She is very known for behavior supports and teaching behavioral strategies.  

It does all go together, but there is also a point where — a shutdown learner is not going to be doing any learning, so you do have to work on the shutdown part if anything else is going to get done.  

I think dd really needs both teaching strategies and behavior support.

She shuts down a lot. She just has no internal motivation for academic work. The work is hard for her. Stress shuts her down, and she says she just doesn't care about the work. 

We don't have much chance of moving to a better area. Actually we're probably in the best spot close enough to dh's work already.

They do use a lot of computer options, such as taking classes online while sitting in the library. I'm not sure of the details, but that's something they've mentioned. It's not what I had been thinking of as ideal. It could be okay, or not, and I just don't know yet.

Edited March 29, 2019 by Innisfree

[Lecka]

When computer instruction like that is good, here are some good things about it:

It can function as a sensory and auditory processing and social break.  Some kids really need this.  

It can be more individualized (but isn’t always).

It can be more of a strength (I guess for more visual kids?).

It can be more predictable in structure, which — for some kids, anytime the structure can be more predictable, they can focus more on the content, because they aren’t distracted by a change in structure.

So I think if that is one part of the day, or some parts of the day, then that can be a good fit for a lot of kids.  Is it a good fit for your daughter?  Maybe or maybe not.  If it’s not a good fit for your daughter — or you think it won’t be — you can say that.  There are definitely some parents who find it a relief to have as an option because they think it will go well.  

Then this is also something easy to describe, where it would be harder to describe some things or harder to know what they might end up doing, for things where different kids might have different things.

So then there is everything else that addresses goals!  

My son has had goals for “tolerating” things or “frustration tolerance.” That is some wording I have seen for — not shutting down.

It is nice you are already in the best option place!  Really — that is good.  It’s better than thinking it would be better if you did move a few miles away.  

The other thing about computers is that — for a lot of kids computer time or a game acceptable for school are their top reinforcer, and that can be built in when computers are used.  My son is a kid (just by personality) who responds to things like “when you finish this you can have 10 minutes of doing something for reinforcement.” It’s okay if your daughter doesn’t have this personality but some kids do.  But I think feel free to share that with them so they are aware.  

I think for “other things” — “not shutting down” is an important goal.  And then academics are important, too.  

Do you have ideas for non-academic goals?  Have you seen any ideas for non-academic goals?  Off the top of my head, maybe google “IEP goal bank social emotional” or “IEP goal bank executive functioning” or ——— something.  But hopefully you are getting ideas for goals rom your reading!

My son has had goals around “frustration tolerance” that can include — when doing academic tasks.  He has had goals for doing independent work for academic tasks (he requires a lot of re-direction — anything independent is good for him).  

So that’s related to academics without it being — learning a math skill or being able to write a paragraph or something like that.  

So I guess hopefully there are things like that?  

Because there are those skills that can apply to anything and can be part of actually doing academic tasks, but aren’t just “be taught how to regroup when adding and subtracting.”

But then there are also things that ARE “be taught to regroup when adding and subtracting” and lots of ideas for ways to teach that and practice that.  

But just to say — ime we have had goals for some skills related to academics.  

But then for teaching techniques — they can be mentioned but it hasn’t been a goal, unless the goal is to be able to do something using a certain technique.  Like if a goal was “show how to regroup using a manipulative such as unit blocks” — which I don’t know if that can be a goal, specifically, but sometimes things kind-of like that can be a goal, where — if that was a goal, you would know unit blocks were being used.  

A lot of goals though — address things like frustration tolerance or independent work — that aren’t specific to certain academic content, and then also hopefully the skills transfer to non-academic tasks, too.

I don’t know if that is the kind of thing you might want?

[Innisfree]

Frustration tolerance might just be the most important goal.

I would really love to see social thinking instruction, but I'm not sure if they'll do anything where there isn't a direct link to academics. But kids who need life skills instruction can get that, and social thinking seems like a life skill to me. She has no friends. One neighborhood girl was a friend for years, but she and her mom finally lost patience with dd and the mom cut off contact. Dd has missed her a lot.

She needs a lot of help and support with executive function stuff. Like-- she always comes out of her co-op classes unsure what the homework is. I know the teachers tell the class, but she never "gets" the information or understands it. So, in the book there are all sorts of supports for getting homework information. That's something she needs. But I'd also like to have her learning how to get that information in the same way the other students do, if that's possible.

Computer time is certainly an incentive, yes. So, yes, that method of instruction would have that benefit.

She is fiercely modest. Won't even let her female nurse practitioner examine her fully. Changing for gym seems like a big stretch, and this book cites examples of schools waiving or altering the PE requirements for that reason. I never even knew that might be related to autism.

[PeterPan]

2 hours ago, Lecka said:

It is very hard to search for her books on Amazon

The best way to find those books and to know if they're the most current thinking is to go look at AAPC, the publisher. They do really great sales sometimes and free shipping too. Prices change all the time, but they often have 20% off and sometimes go as much as 40%.

Edited March 29, 2019 by PeterPan

[PeterPan]

38 minutes ago, Innisfree said:

Frustration tolerance might just be the most important goal.

I would really love to see social thinking instruction, but I'm not sure if they'll do anything where there isn't a direct link to academics.

You need to push social thinking REALLY HARD!!! Did I say that enough? Pound it over their heads. Social Thinking will literally decide her employability. Also affects reading comprehension. Go to the ST website and start reading. They're very, very vocal about all the areas of school that ST affects and why it affects their ability to access their education and why it MUST have intervention. Hopefully it will be a high priority to the school too!

I think the frustration tolerance will improve with the high structure of the school, the social thinking intervention, and work on interoception and self-awareness. If you want to blow the lid off things, bring up Interoception and Kelly Mahler's work. See if anyone bites! There might be someone there at the table who has been in the closet, trying to learn about this, who would step out and help you.

You can't use your self-regulation strategies if you aren't self-aware. You are going to struggle to understand how other people are feeling if you aren't self-aware. So working on Interoception will make everything else go better. And you really might be surprised. At our ps, the SLP is the one innovating and leading on this. Usually it's OTs, but getting OT in high school is less common. Our school farms out OT to a local company (that services adults, all kinds of things) and doesn't have anyone on staff. So it's the SLPs who are there continuously and doing intervention. You never know what allies you'll find who will make goals and help you.

 

Edited March 29, 2019 by PeterPan

[PeterPan]

36 minutes ago, Innisfree said:

She is fiercely modest. Won't even let her female nurse practitioner examine her fully. Changing for gym seems like a big stretch, and this book cites examples of schools waiving or altering the PE requirements for that reason. I never even knew that might be related to autism.

Yeah, sigh. Just from my personal experience, I'll tell you that the student can usually find a work around for the dressing part (use a stall, go to a corner, plan out your clothes, etc.), but that SHOWERING is absolutely out. We were at a ps one year that actually tried to require that, and they had these horrible, curtainless shared stalls. Even that can have workarounds, but I certainly never did it. 

Have you toured yet? That's something where you see the locker room and ask the questions. What do they require, what are her options, what could be solutions? 

[PeterPan]

39 minutes ago, Innisfree said:

She needs a lot of help and support with executive function stuff. Like-- she always comes out of her co-op classes unsure what the homework is. I know the teachers tell the class, but she never "gets" the information or understands it. So, in the book there are all sorts of supports for getting homework information. That's something she needs. But I'd also like to have her learning how to get that information in the same way the other students do, if that's possible.

This is something the school is gonna nail. The good thing is you're coming in with evidence and experiences to head it off. It also sounds like they're taking you seriously. It would be disastrous if they enrolled her WITHOUT supports and did a watch and see for a grading period. You don't want that for high school. But as long as they're listening to you and bringing in the supports, that's fabulous. 

Hopefully they're doing some more testing to nail why she's not getting the assignments. EF, maybe some dysgraphia, maybe some language issues. They shift from intervention to accommodation and deal with it, figure out how we live with it, in high school. 

Yes, they'll take privacy very seriously. I'm sure they'll do whatever they can. It will be really interesting to hear what they offer! Some schools have websites where the teachers post everything or they have all the students get planners. So they might have something that works really well in their system that is discrete. 

[Lecka]

There is information on the Social Thinking website about how it relates to academic goals.  

I think this is an easy thing to ask — ask if they use Social Thinking materials, anything by Michelle García Winner, etc.  If they don’t — maybe they use older things and then DIY.  That can be good too.  It is an easy thing to ask.  I would suck up my courage and inquire.  

This might also let you see if the counselor is who you would talk to, or if you say something like “it’s used a lot with autism” if they say “let me ask so-and-so and let you know.”  If there is a so-and-so they ask — maybe you can talk to that person.  Maybe you could ask if there is someone good to talk to about autism programs.

What happened when we moved — we didn’t live in the district yet and they were very stingy with info.  But now that I am here — I can see they have vastly different options depending on specifics, and those are not handled by the same people, and it takes somebody an hour of hard concentration looking at his IEP to figure out about what people he would be working with.  It was a lot more centralized in our previous district.  All the autism stuff was more together.  Here the special ed type classes (that my son is in) are together with other special ed type classes, and the autism kids in more mainstream are in with more mainstream stuff (still autism — but also grouped together with kids with SLDs or ADHD or whatever).  It’s hard to explain.  But I can see why they couldn’t be sure who I should talk to without giving me really poor information.  

[Lecka]

As far as learning the usual way to get information — a lot of times they identify the “current level of functioning.”  Then they have a task analysis for the task (a list of steps).  Then they look at the next step on the task analysis and make that step a goal or prompt that step or whatever.

So they might say “what is step 1 in things she needs to do in walking out of class with her homework assignment written down with only a verbal direction from the teacher.”  Which might be your long-term goal.

But her current goal might be step 1 of wherever she is in this process.

Is she listening?  Is her auditory processing up to a full class period? Is it up to the speed the teacher talks?

Is she able to identify “a homework assignment”?  Does she know what is meant if there is not extraneous information?

Is she aware of the expectation “listen for a homework assignment and write it down”?  

Does she hear it and know she is supposed to write it down, but not take the step of “actually writing it down”?  

Ime — they have an opinion about which one of these (or whatever step in a task analysis) is the step where she is getting off track.  So they identify that.  Maybe they identify a related skill (like “identifying important information” or “understanding classroom routines” or “understanding classroom expectations” or whatever).  Maybe they identify a support — maybe they give her a paper to fill out (which is a type of prompt) and the teacher checks it as she leaves.  That would be a minor support.  A more major support might be the teacher monitoring her and reminding.  Or whatever — this could be a million different things.

But anyway — yeah they should have goals related to teaching her things like this, and not just do it for her.  

But maybe that goal is in one part of day or area, and other times it is more on the “do it for her” side, and you are allowed to have an opinion about if that is appropriate.  

[Lecka]

I agree with Peter Pan — a lot of people know about executive functioning.  It is common.  A lot of kids have ADHD or anxiety or autism and they all have executive functioning and it is pretty known.

I would be more worried about shutting down at school or putting her head down and not doing things, etc.  Those are things harder to deal with and less people may know how to handle it.  It can take a higher level of support than ———— what a lot of kids need for executive functioning (a lot of kids need a low level of support, basically, and some need more, or even more).  

[Innisfree]

39 minutes ago, Lecka said:

s she listening?  Is her auditory processing up to a full class period? Is it up to the speed the teacher talks?

 

39 minutes ago, Lecka said:

Is she aware of the expectation “listen for a homework assignment and write it down”?  

I get the impression she essentially zones out after a while.

We know from testing that her attention span is short. She can attend, but not for very long, very effectively.

She also hates noise, confusion, disruptions. So if kids are noisy, she's more likely to shut down and stop listening.

She does know that she's supposed to come out with assignments. Sometimes she thinks she understands, then realizes she doesn't. Sometimes she's so fed up by the end of class that she doesn't care.

She does just shut down, too. We had a problem with a teacher trying to pat her on the shoulder to comfort her when she put her head down, and that just made things worse.

There's so much of this stuff I need to write down for them. My teacher evaluation form I filled out was *so long*, but I keep thinking of more.

Academic support -- complex assignments overwhelm her. It all needs to be in individual steps, given at different times.

Group projects must have been invented to torture kids on the spectrum. Social needs, multiple people talking at once, arguments... Ugh. Nightmares. She does not do well with them.

I'm certain there's more.

Edited March 29, 2019 by Innisfree

[Innisfree]

51 minutes ago, PeterPan said:

ou need to push social thinking REALLY HARD!!! Did I say that enough? Pound it over their heads. Social Thinking will literally decide her employability.

This I can and will do. 

41 minutes ago, Lecka said:

There is information on the Social Thinking website about how it relates to academic goals.  

I'll find this and take it to them, thanks!

[Innisfree]

She had testing yesterday, was in a rotten mood afterwards, is supposed to have more testing today but is refusing to go. I've offered rewards, so maybe by the time we need to leave she'll cooperate (at least enough to get in the car and go). I'd like the psychologist to see her when she's fed up. Yesterday she was fresh and cooperative.

Edited March 29, 2019 by Innisfree

[PeterPan]

2 hours ago, Innisfree said:

She shuts down a lot. She just has no internal motivation for academic work. The work is hard for her. Stress shuts her down, and she says she just doesn't care about the work.

 

5 minutes ago, Innisfree said:

She had testing yesterday, was in a rotten mood afterwards, is supposed to have more testing today but is refusing to go.

If I could politely say, I think you have a communication gap. Is she in a rotten mood or is she worn out? And is she able to TELL you how she's feeling? 

It's a challenge to separate the behaviors from taking it personally, to separate what you think is motivation (being bad, being disobedient, whatever) from the skill deficits that drive the behavior.

If this dc cannot SAY how she feels, does not realize what her body is feeling (interoception), does not have the language to self-advocate, then where is she? She's left with people assuming she's bad and being rotten and hard to work with.

It's normal to be wiped out after that testing. Is it past the time to go? One option would have been to acknowledge how she felt and then suggested that they go and that they compromise and not do anything fatiguing but reschedule. The psych WANTS to see how tired she got from her work the day before. It gives him a standardized way to gauge how things are going, because he knows how all the other kids are the next day. So if she would go just to let him see that, then that would help the psych out. She might be able to understand that. 

Or you call the psych up and say sorry she's so worn out she can't compel herself to go and I can't get her out the door, lol. That's fine too. 

Just don't take it personally. Odds are it's not personal. Odds are she's actually a very nice child who complies when she can, but she's feeling things that are so extreme that she doesn't have language to tell you and make it seem nicer. With my ds, we used to say he'd be using profanity if he knew how, lol. 

Anyways, I'm sorry it's hard. Btdt on the refusals. Don't take it personally. Cut a deal if you can, because the psych would find it helpful to see her, even when she's so tired, and he could add more hours another day when she's rested. Just collaborate and problem solve. Try to get her engaged in a positive way if you can and not make it personal or a fight or something.

[PeterPan]

12 minutes ago, Innisfree said:

Yesterday she was fresh and cooperative.

Some psychs will spread sessions over a number of weeks so they see the range of how the dc presents. Is she often moody? Is she at a place with puberty where moodiness is normal and is it within the range of typical? 

Still, overall I'd assume she's feeling intense things and her ability to communicate and problem solve is dropping. Testing is really fatiguing, poor thing.

[PeterPan]

19 minutes ago, Innisfree said:

Academic support -- complex assignments overwhelm her. It all needs to be in individual steps, given at different times.

Group projects must have been invented to torture kids on the spectrum. Social needs, multiple people talking at once, arguments... Ugh. Nightmares. She does not do well with them.

I'm certain there's more.

We haven't done a high school IEP, but this sounds like a higher support than someone who mainstreams for everything. I would keep telling them everything and let them get to know her well enough to figure out a good placement. They're going to have a variety of placements. Do you know her support level? They finally bumped my ds' support level to 2. That language shutting down, where he can't self-advocate and the language is affected to that extent, is a big issue.

So I think they're going to see that and up supports. She should also be getting evals for language and counseling. Did you say she flopped at counseling? It takes so much language. Language is what drives everything, sigh. It can be anyone on the team who sees how language is affecting her. SLP, OT working on interoception, art therapist, music therapist, psych, anyone. I'm looking into getting my ds art therapy, because they could tackle the same issues but with less language, sigh. 

Well the good part is it sounds like they're trying to get to know her. She's not the only one who has been in this pickle and they're going to be thinking about how they can place her so that she'll function well. See what they come up with. Hopefully it will be good and supportive and helping her succeed rather than waiting for her to fail. I'll bet it's really good. It sounds like they're very compassionate and making an effort. If they bring up those supports and give her a chance, I'll bet she sees that and is encouraged too. Some of the people working in the resource rooms and whatnot have a real heart for kids with SN and make a lot of effort to be encouraging and supportive. She may do really well and this may be a turning point for her. There's a lot that comes with that positive momentum, even if things have happened in the past. You get that right person, that positive momentum, and she will probably start doing things. I see that with my ds. 

[Innisfree]

2 minutes ago, PeterPan said:

. Is she in a rotten mood or is she worn out? And is she able to TELL you how she's feeling? 

Oh, I know she's worn out. I didn't mean to imply she's being bad per se. She is, just objectively, in a rotten mood where she snaps at everyone, even her dog. She just can't take any more noise, smells (dog, he was digging), anything. But I know it's because she's worn out and overstimulated.

Can she verbalize how she feels? Not really, especially when she's tired.

The testing is in 2 hours. She may be able to manage it, we'll see.

The testing is spread out. We have more days scheduled, so if today doesn't happen, it's not the end of the world.

[Innisfree]

9 minutes ago, PeterPan said:

We haven't done a high school IEP, but this sounds like a higher support than someone who mainstreams for everything. I would keep telling them everything and let them get to know her well enough to figure out a good placement. They're going to have a variety of placements. Do you know her support level? They finally bumped my ds' support level to 2. That language shutting down, where he can't self-advocate and the language is affected to that extent, is a big issue.

Yes, I'm having trouble imagining her mainstreaming for everything. Maybe over a long time. I really want to keep her in high school until she's 21, to get as much support and eventually vocational training as possible, so maybe over time she could manage the regular requirements, but I'm doubting it at this point.

She was initially diagnosed at level 2. Recently her dev ped has been putting level 1 on her paperwork, but I think 2 is more accurate.

Edited March 29, 2019 by Innisfree

[PeterPan]

2 minutes ago, Innisfree said:

she snaps at everyone, even her dog. She just can't take any more noise, smells (dog, he was digging), anything. But I know it's because she's worn out and overstimulated.

The ADHD meds help my dd with that.

11 minutes ago, Innisfree said:

Can she verbalize how she feels? Not really, especially when she's tired.

Yes, you have the interoception issue (realizing how she feels, awareness of her body and emotions) and then you have the language dropping, sigh. Does she have a phone, even an old one on wifi, so she can text? Some people text when their language drops and some people use AAC. There are a TON of great, middle of the road AAC apps that people will use. Doesn't have to be all the way to LAMP or something. It's more common than we realize to have language drop and go to text/AAC. Proloquo2Go, all kinds. Stuff will be on sale for April and autism awarenes month.

[PeterPan]

8 minutes ago, Innisfree said:

Yes, I'm having trouble imagining her mainstreaming for everything. Maybe over a long time. I really want to keep her in high school until she's 21, to get as much support and eventually vocational training as possible,

Yup, that's what we're thinking too. And I think with that IEP you can keep them in the system till 21, do transition, etc. Transition is the law anyway. Is she registered with your county board to get transition services?

[Innisfree]

Yes, she's on the waiver waiting list. Of course the list may never be funded enough for her to get a waiver, but as she gets older, there's help she'll be eligible for.

She's been refusing any meds beyond ibuprofen for months now. It's a control thing. She was on them, and they did help, but she'll have to choose to take them. Since she doesn't want to acknowledge that she needs help, that's not likely atm. Interception is probably an issue there too, sigh.

[PeterPan]

In our state the waiver and county services are two separate things. 14+ gets a transition coordinator and they are placed with job training, etc.

Sorry it's hard. Sounds like you're doing the right things. Yes, the Interoception work can sometimes be the missing piece in why the other interventions don't work. https://www.kelly-mahler.com/what-is-interoception/

It may help too for her to get in with peers and swap stories. Like you say, she may choose them herself at some point. Like if she were hanging with my dd, my dd would tell her story and then your dd could be like no way are you for real I want that too... It could happen. She has no friends right now, but maybe in some of these settings it will happen. Or maybe there's some kind of teen social skills group run through an SLP office or psych? 

[PeterPan]

Well keep us posted. You're doing the right things, so you just keep swimming and doing them. 

[PeterPan]

I don't know what your options are or how you'd translate this into what would work for her (and fit your budget and all that), but our behaviorist encourages me to do positive things with my ds that repair that relationship and get some positive momentum going. Like we do a lot that sucks and is really hard, so she's like yes, go travel, go somewhere and just be together and get back your happy together. 

Age 13/14 is a funky time to do that, but you could just think about it. And the kid can be a total pill too. But it's just something to think about. ABA will call it pairing. Like earlier this week ds and I went and looked at Teslas. It was sort of an accident (making lemonade of a trip that didn't need to happen because the appt was canceled, grr) and we just took some time and ate junk food and hit the Tesla store. We really need that, because the rest of the time it's all demands and work, work, work. And I've taken him to Disney and on cruises. I need to find lower key (cheap) things to do too. 

So maybe that and the communication that results can help. Like you can just bring it back up, like hey someone was telling me her dd's sensory overload is helped by the ADHD meds, were you interested in those again... 

My dd is funny. She'll growl but then later, like 6 months or a year later she's like oh yeah now I'm ready to try that. And its about giving her power too and then helping her see the consequences of her choices. She's at the age where she's taking over, yes. It's hard, because we can't protect them or smooth over every consequence. We can show them we're helping them by helping them see how the plans/paths will pan out with various choices. 

[Innisfree]

Yes, I agree the positive stuff is important. I've been telling dh we need more of that.

One thing I've insisted on is letting dd do an activity she loves almost every afternoon. It might have vocational potential down the line, and it's something that gives her enormous satisfaction. So, I have not been willing to take away this activity as a consequence for anything else, even school participation. This is the most positive thing in her life, and she needs it, end of story.

But that's something she does on her own, not with me. Which is good-- independence is important. But you're right that we need to do fun things together. I'll have to think about that.

[Terabith]

8 hours ago, Innisfree said:

Frustration tolerance might just be the most important goal.

I would really love to see social thinking instruction, but I'm not sure if they'll do anything where there isn't a direct link to academics. But kids who need life skills instruction can get that, and social thinking seems like a life skill to me. She has no friends. One neighborhood girl was a friend for years, but she and her mom finally lost patience with dd and the mom cut off contact. Dd has missed her a lot.

She needs a lot of help and support with executive function stuff. Like-- she always comes out of her co-op classes unsure what the homework is. I know the teachers tell the class, but she never "gets" the information or understands it. So, in the book there are all sorts of supports for getting homework information. That's something she needs. But I'd also like to have her learning how to get that information in the same way the other students do, if that's possible.

Computer time is certainly an incentive, yes. So, yes, that method of instruction would have that benefit.

She is fiercely modest. Won't even let her female nurse practitioner examine her fully. Changing for gym seems like a big stretch, and this book cites examples of schools waiving or altering the PE requirements for that reason. I never even knew that might be related to autism.

I was really pleased to discover our middle school doesn't have kids change for gym, specifically because so many kids were refusing and there were so many behaviors around it.  

[Innisfree]

Bumping this to bring it up to date.

We have our IEP eligibility meeting tomorrow. I *think* we'll get it. The school psychologist who did dd's testing called today to see if I had any questions. She said that she couldn't say the team would approve an IEP, but that she thought they would, and she had worked under that assumption herself.

And, guys, she said she could see all the work we had done. She said we did a good job homeschooling.

Dd's WISC-5 was all over the place. I can't remember all the numbers off the top of my head, but the spread went from 77 for processing speed, I think, all the way up to 133 for verbal comprehension.

That 133 stunned me. The last two times the WISC was done she was squarely in the slow learner range for everything. But she was also shutting down during testing repeatedly in the past, and never finished all the subsections. So-- they had said to interpret those old results with caution. But everything we had was consistent, and it was all in the 70s-90s. So that seemed accurate. 

But this year, the psych said she worked doggedly. She just kept going and got through it all. She came home and melted down spectacularly afterwards, and barely got back to finish the next day, but she did it.

On the achievement testing, she was right around the 50th percentile.

So she's got great verbal comprehension, her working memory and processing speed are very low, her analytical skills are still low end of average. But overall, in spite of glitchy thinking and ASD shutdowns, she's learned enough to be right around the middle on achievement tests. I'm pretty satisfied with that.

Oh-- and we hired an advocate with tons of experience with ASD kids. We met him yesterday and were pretty impressed. He saw some of dd's weaknesses, because she was *not* happy about meeting with him. He seemed to get what was going on with her, and I think he can help convey her needs to people at the schools.

Wish us luck for the meeting tomorrow, please!

[PeterPan]

4 hours ago, Innisfree said:

she had worked under that assumption herself.

See, but in our district that means when you walk in all the team members will have drafts of their parts of the IEP written. But yes, whatever happens, it sounds promising! And yes, even though it's not supposed to happen, there seems to be sometimes a dynamic where everyone looks at one person who has the most power in the room at that moment and they all get in line. So having the psych in your court is HUGE.

4 hours ago, Innisfree said:

And, guys, she said she could see all the work we had done. She said we did a good job homeschooling.

Yay!!!!

4 hours ago, Innisfree said:

But this year, the psych said she worked doggedly.

How wonderful! That's probably why ou finally got some valid, useful results. It also sounds like this psych was good at bringing good things out of her. Excellent!

4 hours ago, Innisfree said:

Oh-- and we hired an advocate with tons of experience with ASD kids.

Wow you're sharp! So he will know how your district rolls. Our district is about as nitpicky as any *I've* heard of in our state. They wanted the exact legal definition proved. Your advocate will know this, but the issue, the big win, is getting the disabling condition listed as what you think it should be. They could throw wild cards there. Hopefully they won't though and you've got your advocate to help you understand what they're offering and formulate a response.

Well good! This process is so stressful, but it sounds like you're going to be to the other side soon.

[Lecka]

Good luck tomorrow (today?)!  I’m glad you got an advocate — awesome!

That is great her scores are up, and she persevered on the test 🙂  That is wonderful!

I think it’s a really good sign too, the woman you are talking with assumes she will get an IEP.  It’s not her job but she probably does basically know.  

 

[Innisfree]

We got the IEP! There was no disagreement at all, everyone seemed to feel it was appropriate. Dd qualified under autism and other health concerns.

So, now the real planning starts. I'm curious about how different areas handle direct social skills/social thinking and emotional regulation instruction in high schools. Starting a spin-off thread for that...

[Lecka]

That is awesome!!!!!!

Our previous district I know had some job training (where older students could have a job in the community and an aide and teacher would go to check up on it), and they also had a club that did activities, that was set up to be like any other student club but had fun activities.  It was called “friendship alliance” or something like that.  

Those were just ones I heard about or knew about, but none of my kids were that old.  

[PeterPan]

Congratulations!!!