Psych testing results - what to focus on now

[Jentrovert]

Thanks to discussions on here, I had scheduled psych testing for my daughter. She had SLP testing (thank you for the advice!) and was dx'd with dyslexia, dysgraphia, and mixed expressive/receptive language disorder. After posting those results and some discussion and advice on another thread, I was able to find a psych with at least some experience with girl autism to do an eval. In addition (can't remember if we discussed this or not) we also had some concerns about adhd. 

So, anyway, I just got the psych report and she dx'd ASD1 and ADHD combined, severe. 

I'm so thankful for the advice from here to take in notes. I took 8 pages of notes with specific examples of things we are seeing. She passed the ADOS, scored 2, so the notes and interview were critical in getting a full picture and an accurate dx. The psych said taking everything into account, she met the criteria despite passing the ADOS. 

Very much expected. I feel . . . validated (yes, we're not crazy, we are seeing this stuff) and sad that she'll be dealing with all this and bummed that I'll be dealing with all this . . . all at the same time. 🙂 

I wonder if I could get feedback on what my priorities should be for, say, the next 6 months? Here are my ideas. I'm open to changes and being told what's most important and anything else I haven't thought of:

Continue doing Barton at home. DD just started Level 3 and it seems to be going well.

Contact the local school. What exactly is it that I'm asking them? I want to know what services are available, or I want an eval for special ed services? Something else?

Figure out speech therapy. There is a therapist in our small town. I don't have a great impression of her. She did an eval on my son some time ago and didn't seem to have a good view of homeschooling. Also I think I mentioned on another thread that I had a conversation with someone who had been told by her that their son could not be on the spectrum because he played with other kids. However, in fairness, this doesn't have anything to do with her skill at speech therapy, so I should probably put that impression aside. If we don't use her, it will probably be at least an hour drive to someone else. I don't know if she specializes in anything; I do know that she has been doing speech therapy for over 20 years. The kids have Medicaid, and so far they have paid for private services. But I keep expecting they're going to say, go through the school. I'm not sure if speech therapy at the school is individual or group.

Get an OT eval. Just because and for the dysgraphia. She had OT when she was little, for coordination issues and I believe they did some reflex work. (She has also had vision therapy and recent testing there which included some reflexes; we're continuing therapy at home.)  She has some sensory issues as well.

Check into ABA. I've done some preliminary googling, and this will be at least an hour drive, more likely 1.5 hours or more. Sigh. I'm not sure that we can make this happen regularly, even though it probably is a high priority, right? 

Things I have in mind but am not sure what priority they should be. (1) Social Thinking resources: I have the social detective book, but that is all. What first? (2) Mindwing stuff: Is this what the speech therapist will do? (3) Interoception stuff  (4) I think there might possibly be some issue with working memory or slow processing or something. More testing? 

 

 

[ktgrok]

Not saying not to do it, but for full information you should also look into the pushback against ABA by those with autism. 

[Storygirl]

You have a good list, but I agree it's hard to prioritize. Sometimes you just have to pick a few things and get started, then add more on as you go along.  How old is she?

One important thing I would add to your list is to contact your county board of developmental disabilities to qualify her for services there. Each county will offer something different, so you will have to meet with them to discuss what might be helpful to you. I think with that list of needs, she would qualify, and the county (and also your state) can help you with funding some of the things that she needs. They may be able to also direct you to additional ways to get help in your area.

For the school, if you are homeschooling, there is not a great need to connect with them, in my opinion, with a few exceptions. FIrst, if you think that she might be enrolled in school someday (I thought we would not enroll, but my kids are enrolled now), it's helpful for the school to assess her needs before she gets into their classroom, so that she can get a jump on intervention services.

Secondly, some schools will offer services to homeschoolers, and some will not. You will need to ask, and then you will need to decide if what they have to offer will be worth it. Sometimes what they have to offer is minimal and will not be enough for what you need. But you won't know unless you ask. You can call up their student services division (which the special education department) and just ask if they have things to help homeschoolers with diagnosed disabilities. Ask to talk to a case manager, not just the person who answers the phone.

Thirdly, some states have funding and/or scholarships that homeschoolers can access, if they have a student with disabilities and an IEP. Our state is like that. You have to have the school assess the child and write an IEP in order to apply for the scholarship. Your state may or may not have something similar. You may need to do some research to figure it out. Ask when you call the school and the county, but also look it up for yourself online. Our state has a lot of information posted on the state department of education website.

This only addresses a couple of your questions. I have to run, and hopefully someone else will chime in.

[Lecka]

3 minutes ago, Jentrovert said:

Check into ABA. I've done some preliminary googling, and this will be at least an hour drive, more likely 1.5 hours or more. Sigh. I'm not sure that we can make this happen regularly, even though it probably is a high priority, right? 

 

This will just depend on your location!  But I assume you are looking at this website as well as maybe people who aren't certified (our insurance requires the certification):  https://www.bacb.com/

Okay, here is my experience, lol, living two places.  

In one place, my son was supervised by someone a 2-hour drive away.  The RBTs and a BCaBA were local.  The office and all the information on the website showed it as a 2-hour drive away, though.  

Also there -- college students working as RBTs often would use their home address and not show up as local from this website.  Also as an aside -- the BCBA here had moved here I guess recently but I think over a year ago, and apparently hadn't updated her address on this website yet?  So she was not showing up.  

There are also options like consultations where somebody helps to set up a program for you and you implement or you hire people locally.  

This might not be a higher priority for you or end up working out or being worthwhile.  

But -- both places I have lived have major to semi-major waitlists, so you might want to get on waitlists and then decide later about it -- that would be an option ime, I do hear differently in other locations, though.

I would send emails to every BCBA on the list between you and major cities (and possibly into major cities depending) and say your area and say "do you know of anyone providing services in this area."  

This is how I found my current person.  I sent out about 5 emails and someone from 75 miles away responded with the contact information!  

Also asking around can be helpful.  

Good luck!  My son was younger and had limited verbal skills so ABA and contacting the school were our main two recommendations.  My son went to special needs pre-school from that time and is still in public school, so I don't know about that. 

The other thing is, both places I have lived, there are barely any BCBAs, so it is not like I have been sending out a huge number of e-mails 😉 

If you can get social skills goals through speech therapy and the speech therapist runs a social skills group billed as speech therapy ------- through school or not lol ------ I would be jealous.  Some people can get a combination of private and group sessions.  

I also have to say -- depending on the situation for sure -- but I have a pretty positive impression of group speech, because they can build in more peer social skills.  It does depend but it can be good!

For example my son for a while had group speech with 2 other boys who did not have autism but had some other language goals -- and it worked out really well.  This was with a school speech therapist also.

Where I live right now, ime the school speech therapists are better than private without driving 90 minutes.  I do hear good things from people who drive 90 minutes!  But.... in the big picture it doesn't make sense for us.  Locally-locally -- where it would actually be convenient -- they only do 30 minutes sessions!  Which is not worth the time out of the day for our situation.  It is geared towards little kids where that is appropriate to their attention span.  For a bit of a drive -- for our situation we are better off with the school speech therapist.  Ymmv!

For the local school -- I don't know specifically.  Here my son does not do it, but some students with autism who are in different classes see the school counselor for social skills and talking about their feelings and there is autism-directed stuff that is used (the kind of thing you see that can be used by various professionals).  

 

[Storygirl]

I have found the whole ABA thing to be confusing and have gotten some mixed information about it when talking with people. It's been useful to learn about basic ABA principals, but we have not hired any ABA professionals. You can hire people to come to your home to do ABA, so that you would not need to do that drive. I know that PeterPan has done this and hopefully will add some more ideas.

Know that ABA has changed over the years, and that people may mean different things when they discuss it.

[Jentrovert]

Thank you! 

23 minutes ago, Storygirl said:

You have a good list, but I agree it's hard to prioritize. Sometimes you just have to pick a few things and get started, then add more on as you go along.  How old is she?

One important thing I would add to your list is to contact your county board of developmental disabilities to qualify her for services there. Each county will offer something different, so you will have to meet with them to discuss what might be helpful to you. I think with that list of needs, she would qualify, and the county (and also your state) can help you with funding some of the things that she needs. They may be able to also direct you to additional ways to get help in your area.

For the school, if you are homeschooling, there is not a great need to connect with them, in my opinion, with a few exceptions. FIrst, if you think that she might be enrolled in school someday (I thought we would not enroll, but my kids are enrolled now), it's helpful for the school to assess her needs before she gets into their classroom, so that she can get a jump on intervention services.

Secondly, some schools will offer services to homeschoolers, and some will not. You will need to ask, and then you will need to decide if what they have to offer will be worth it. Sometimes what they have to offer is minimal and will not be enough for what you need. But you won't know unless you ask. You can call up their student services division (which the special education department) and just ask if they have things to help homeschoolers with diagnosed disabilities. Ask to talk to a case manager, not just the person who answers the phone.

Thirdly, some states have funding and/or scholarships that homeschoolers can access, if they have a student with disabilities and an IEP. Our state is like that. You have to have the school assess the child and write an IEP in order to apply for the scholarship. Your state may or may not have something similar. You may need to do some research to figure it out. Ask when you call the school and the county, but also look it up for yourself online. Our state has a lot of information posted on the state department of education website.

This only addresses a couple of your questions. I have to run, and hopefully someone else will chime in.

 

She's 8. 

We don't plan for her to be enrolled in school, but never say never. 🙂 I'll see if they offer anything, though. 

I'm not sure about the county board of disabilities or any state funding/scholarships, but will add that to my list to check on.

Thank you!

[Jentrovert]

31 minutes ago, Lecka said:

I would send emails to every BCBA on the list between you and major cities (and possibly into major cities depending) and say your area and say "do you know of anyone providing services in this area."  

I'll try this, thanks

If you can get social skills goals through speech therapy and the speech therapist runs a social skills group billed as speech therapy ------- through school or not lol ------ I would be jealous.  Some people can get a combination of private and group sessions.  

I also have to say -- depending on the situation for sure -- but I have a pretty positive impression of group speech, because they can build in more peer social skills.  It does depend but it can be good!

I had wondered if there would be some advantage for the social skills. This is a good way to look at it.

Where I live right now, ime the school speech therapists are better than private without driving 90 minutes.  I do hear good things from people who drive 90 minutes!  But.... in the big picture it doesn't make sense for us.  Locally-locally -- where it would actually be convenient -- they only do 30 minutes sessions!  Which is not worth the time out of the day for our situation.  It is geared towards little kids where that is appropriate to their attention span.  For a bit of a drive -- for our situation we are better off with the school speech therapist.  Ymmv!

The speech therapist locally would be the same therapist that provides services in the school. From what I understand, she does the school and private practice. So the only difference would be location and whether or not it's group.

 

 

[Lecka]

It's one of those things -- some people will make a point to add in social skills practice by playing games or things like that, or whatever, and some people don't make a point of it.  I think I've had it go both ways with school speech to some extent.  It depends on what they decide to do and how they do things.  

It is hard to know where to start or for what amount of money.  I think the MIndwings Autism package is worth looking at.  For Social Thinking depending on where you want to start -- you can get a lot of information just from the website.  And then see if anything looks like it would fit your daughter.  I am feeling a little in-between with Social Thinking products (the main package ones) as far as what would be a good fit for my son.  But I do think it is all quality stuff.  

My son did ABA for about 6 years and I have experience with it both home-based and center-based.  

There is a lot of overlap between professions with autism.  A lot of things are being done by all different professionals.  Iow there can be a lot of overlap between ABA, speech therapy, OT, etc.  It depends on what the goals are.  

For the speech therapist, if he/she has not done any continuing education or professional development wrt autism, he/she may be pretty behind the times.  I wouldn't think this would mean what he/she did do would be bad, but it might not be as informed as far as some language/comprehension issues or some social skills/pragmatics issues.  

[Lecka]

AAPC is having a sale right now for 30% off, it is full of autism books 🙂 It is either through Cyber Monday or also on Cyber Monday. 

Mindwings is having a sale, too, I think it is today but I'm not sure for how long.  

[ktgrok]

Oh, you may want to post about what state you are in, maybe in a separate post, to see what services are available. Here in florida an ASD diagnosis would qualify her for the Gardiner Scholarship which will give up to 10K a year for homeschooling/educational materials, curriculum, therapy, etc. 

[Lecka]

You will be lucky if the speech therapist does Mindwings type stuff.  I have similar through school and one school had it as reading comprehension with a special ed teacher, and the other had it as a speech therapy goal with the speech therapist.  Reading and speech therapy goals often overlap for my son.  For example, right now he has goals about answering "why" and "how" questions under reading and speech therapy both (this is how the goals are on his IEP).  But at the previous school, the speech therapist did much more with him that was reading-related (and reading comprehension-related), and here it is done in his reading group with the special ed teacher instead.  I would not count on it, but it would be nice, if he had it some with a speech therapist or even if he was enrolled in school.  

To be honest with you -- my son had a 6 most recently on the ADOS, and he qualifies for everything at school, and he has always been in a program where they bus kids (but we have lived where it would be his home school -- we picked our house here partly based on that).  

A lot of things he does qualify for, there can be other kids at the same school where their parents are being told, "he doesn't need this, she doesn't need this," but really they would benefit.  

[Lecka]

What are your main goals/issues?  Behavior issues?  Rigidity?  Language skills?  Conversation skills?  Social skills?  

The interoception book is on a good sale right now on AAPC, I will link it.  I have not read it but it is very recommended 🙂 https://www.aapcpublishing.com/products/interoception-the-eighth-sensory-system?variant=23029042151472  

[PeterPan]

1 hour ago, Jentrovert said:

Continue doing Barton at home. DD just started Level 3 and it seems to be going well.

How is her reading comprehension? That's going to be your real issue. Ds ended up a hyperlexic dyslexic.

1 hour ago, Jentrovert said:

Contact the local school.

Who said to do this? Does your state offer scholarships and you need an IEP to access them? Are you *wanting* to enroll her? Her disabilities are already identified, so you're either wanting services, access to something you get with an IEP (per your state law), or services. Remember school services would ONLY be to help her access her education, not a medical level of intervention. In fact, you want to check whether your district is even required to provide services. It varies by state. All are required to IDENTIFY by federal law, but providing services varies by the state.

1 hour ago, Jentrovert said:

Figure out speech therapy.

Since you have funding, I would milk the woman. However I would look at your paper trail and figure out WHAT you want her to work on. You probably have 5-6 areas an SLP could address, and assuredly Medicaid is paying for maybe 1 hour a week. That means she's going to hit 1-3 of your areas, not everything. So you have this balance of what you can do or are not strong in and what SHE likes to do. If you go in wanting syntax and she's grammar phobic, it's an uphill battle, lol.

What did they say about anxiety? Is there any anxiety or language dropping or mutism or word retrieval on top of this? 

Almost everything of language that needs to be done YOU CAN DO if you're game, if you have the time, if you have the money to buy the materials. I'm saying that particularly to you, that you CAN do this and should not underestimate your ability. However structure, variety, opportunities to generalize, different perspectives, there are a number of reasons why it can be good to build out a team rather than doing everything yourself. So if you LIKE the SLP and your dd clicks with her and you pick 1-2 things that SLP does WELL to have her FOCUS on, it can be really good. 

If her pet things are things you could do just as well yourself, that will be annoying. But it can be good and is worth the effort. She just can't do everything. You will HAVE to do language work yourself. If you do not feel comfortable doing that, then you could consider enrolling her to get the benefit of an IEP and a team effort at it. LANGUAGE IS EVERYTHING. Language is reading comprehension. Language is math. Language is writing. Language is pragmatics. Every single thing in her school day is touched by language, so if you look at my ds' IEP he has language goals across the curriculum. 

School IEP teams vary in how well they integrate. I went to a talk on IEP team collaboration and some schools are really kicking some SERIOUS BUTT on this. Like if I had a team offering what they were saying, I'd enroll my ds.   But you know, it's just something to see. The IEP process is 120 days of stress, and really they can't do a really spot on IEP till she's enrolled. But I'm saying be honest with yourself. I'm clearly not saying school is the only way (since I'm still homeschooling), but there's a lot to be done. If you aren't using an IEP team, then YOU are the IEP team. You have to think and collaborate and not section yourself off like oh the SLP will handle it. 

1 hour ago, Jentrovert said:

Get an OT eval.

Yup.

1 hour ago, Jentrovert said:

Check into ABA. 

Remind us, how old is the chickadee? And is there ID, average, or a gifted IQ? The older the dc, the less they know what to do with them, especially if not ID. The assumption is the school is taking over. You should call, but try looking for someone who is NATURALISTIC. Actually ask about it. Say I think I'm looking for naturalistic ABA services, I don't know what this means, what do you do and how is this different? Just let them explain. 

In general, you'd like them coming to your home. This means the consultant will supervise and hire closer people. It can take a while and be hairy. I suggest you call your county board of disabilities and ask them to get you referrals for ABA providers who can come to your home. It will improve generalization. They can also help get your homeschooling going better. How is that going? Is it like no big deal or do you have issues? Then again, having someone in your home, seeing what is going on, giving you help, could be the thing.

1 hour ago, Jentrovert said:

Things I have in mind but am not sure what priority they should be. (1) Social Thinking resources: I have the social detective book, but that is all. What first? (2) Mindwing stuff: Is this what the speech therapist will do? (3) Interoception stuff  (4) I think there might possibly be some issue with working memory or slow processing or something. More testing? 

So here's the joke of it. The system is set up to drive major things (ABA, IEP goals, etc.), but a lot of this newer stuff either squeezes into those (Social Thinking done by the SLP as IEP goals, narrative language done by the SLP as IEP goals, interoception done by the SLP or OT as IEP goals) or they're not available, the people aren't trained, and you're left doing them.

So to me, see what you have available. If you have a long wait even to get started on intake for ABA, then you're not waiting around. In general they would do some of the Social Thinking stuff, sure. Not interoception most likely. But if the wait is long, it's not of a benefit to wait. 

On deciding between the Social Thinking and Interoception, I think see which is more pressing. You'll want both, but which right now is really radical in her world? If you do We Thinkers 1 (which I have and could stand to sell, feel free to bug me), you're going to hit basic concepts like BODY IN THE GROUP. So if that's the most pressing thing, how you interact with her, how she interacts for your school work or activities, then that might be the place to start. It's great stuff. However if her SELF-AWARENESS is the biggest issue, like realizing how she feels and being able to self-advocate, then that would be the place to start.

If you're only choosing one, that's how I would choose between them. Both are fine and good. Interoception is maybe *easier* for you to do with her. But the We Thinkers is highly structured. If you *can* do both, it's not a problem. You could do a lesson from each, each week, no problem. If you're game, that's a thing you could do. She'll enjoy the interaction and make good progress. It would not be duplicative or fatiguing. 

Another way to do that would be for you to do the interoception work (unless the OT is trained and game and going to do it) and then get a social skills group through the SLP for the We Thinkers. That would be another way to do it. Then you would just reinforce/generalize.

Cognitive therapies? You should have already hit the working memory with your Barton work. How is her rapid naming? That's the one thing I always recommend. That's a simple 10 minute a day throw in. Just print my dropbox files, put in a notebook in page protectors, boom. 

1 hour ago, Jentrovert said:

ADHD combined, severe. 

You're pursuing meds? Have you had any issues with aggression? If you really want to get wild, get a 23andme kit and run some genetics. They're on sale right now. Might turn up something useful. Beyond that, assuming no aggression, I'd put the kid on meds in a heartbeat. I think the meds will help the concepts from the We Thinkers STICK better. After all, how are you supposed to notice the group and pay attention to body language if your brain is constantly squirrel squirrel??? It doesn't. And people often say their kids do SO much better with the Social Thinking and Zones of Reg when they get them on the meds. So just me, but as far as prioritizing, that's probably where I'd be. You could wait and start Social Thinking materials in January and work on getting meds, getting a team of therapies built, and beginning interoception right now. 

I'll say that again. 

Nov-Dec--build your team, line up therapists, get ADHD meds, run genetics, work on interoception

Jan--begin social thinking and other interventions

I think you'll like the interoception work because it's very natural, builds communication, and pretty no harm no foul. There's not anything that's going to be like oh that provoked her anxiety or oh I hate the philosophy behidn that. It's just self-awareness and self-advocating, and it could make everything else go better. It's scalable to her language issues, because the curriculum has printables at so many levels. It will build your relationship and make the foundation for the rest to go well. That way, if she gets into something and feels frustrated, she can TELL you.

That's a hard thing in our house, fwiw. My ds does not necessarily love his therapists and workers, and it's a challenge to sort out what is legit, what is them, what is him. So again, building self-advocacy skills goes a long way. 

Have you looked into RDI? =Relationship Development Intervention. I'm not saying spend a long time on it. However if you can get access to it and have a good person (especially if you are having trouble getting a provider for ABA or even just in the meantime) it could be really good. We did an intake eval and got a page of recommendations, and it really got us some good mileage. I highly recommend it even for the SMALL amounts like that, and it might be something quick and dirty you could do over this month when you're like I want to do something but ABA has a 6 month wait. So do RDI then, just a little, maybe just 1-2 appts with an intake. RDI starts with joint attention. They'll work on it in ABA, but the way the RDI people do it is very natural, game based, powerful. Highly recommend.

1 hour ago, Jentrovert said:

sad that she'll be dealing with all this and bummed that I'll be dealing with all this . . . all at the same time. 🙂 

Hmm, do you think she's sad? She's the same kid she was. She'll be HAPPIER after she does interoception work, because she'll know how she feels and how to feel better. She's gonna have an awesome life and you're going to do great at this.

As far as the your side, give yourself permission to grieve (yes) and also to say no to all this. There is not some mother litmus test, like good mothers do all this intervention themselves and junky ones send their kid to school. Kwim? It's really important that you and the other parent and your pastor/priest/whomever you trust sit down. Ok axe them. But just be honest about what you want and what is realistic. If you want to put her in school, you'll still be quite busy advocating. 

What you just found out is her needs are SIGNIFICANT. You found out she needs support (ASD), and significant interventions (language, OT, social, on and on). These are things normally done by a team, and the COST of doing them yourself will be your health, your sanity, your cooking, your laundry, your whatever. Do you have time/energy to add many more things to your day? What will you give up? Do you WANT to do that? 

It's ok to say the list is significant and put them in school. It's ok to choose to do it yourself. Now that you have full information and full evals, you can look at the teams you can assemble both ways and make that CHOICE. I wouldn't force yourself to do this if you're not into it or you think a school team would be better than the private team you could assemble. You're still an awesome mother and going to be doing a lot of work either way.

Edited November 29, 2019 by PeterPan

[Lecka]

https://mindwingconcepts.com/products/autism-3-books-only?_pos=1&_sid=7300d482d&_ss=r

This is the autism collection I have from Mindwings.  

It is hard to say what your top goals right now are, and that is how you would decide where to start.  

For how to think about that, you can think about:  Are there any daily problems right now?  Are there any things she is excluded from or can't participate in?  Are there any things where she can't participate successfully?  Are there any things where she can participate but there is room for improvement that you can see in some areas?  

There are a lot of angles for autism and it can take time, and then new things come up, too.  

To some extent you can just start somewhere, and have to just start somewhere, I think.  

Edit:  I would feel bad if this was something expensive that wasn't that helpful for you.  The interoception book right now is a great price, though!  

Edited November 29, 2019 by Lecka

[Lecka]

Working memory and/or slow processing are really common with autism and often this is related to language issues.  This is a reason you can see a lot of recommendations for using visual aids.  I don't know if you need testing for that or not.  

I don't know what your thoughts are for ADHD medication.  I don't know if that was recommended or not, but if it was recommended to do a trial, I think that would be up there for things to do.  Because -- if she does respond well with it, everything else will be easier.  

That is it's own topic because some kids with ADHD and autism really, really benefit from medication, and for other kids no effect.  

I have not tried as I have been told it would not help, my son is not also diagnosed with ADHD, etc.  

I have known people both ways though, where there kids have had really good benefits, and where they have had no benefit.  I also have known a few people where their kid is still going a hundred miles an hour, and they say "but you should see him without the medicine."  

 

Edited November 29, 2019 by Lecka

[PeterPan]

4 minutes ago, Lecka said:

the autism collection I have from Mindwings.  

For op, I'll just say the sale at MW right now for Black Friday is good enough that this is a solid place to start. And if you *want* to buy something from the Social Thinking people, We Thinkers 1 and 2 would be good. 

Unfortunately, by the time you buy all this stuff, it's a lotta cash! So if you are prioritizing, odds are your ABA people or the SLP will have the social thinking stuff. Super common. Less common for them to have narrative language materials and *rare* for them to have interoception. So that's where you put your $$, in the stuff you can't get someone else to do for you.

You can see if your state autism org has a lending library with materials. Ours does. Or move to a state with better access to services.

[PeterPan]

2 minutes ago, Lecka said:

Working memory and/or slow processing are really common with autism and often this is related to language issues. 

They'll go up a bit with the ADHD meds.

Won't help word retrieval, narrative language, self-awareness, and anxiety, lol, but at least the speed and working memory/EF will bump a bit.

That's why I was saying I'd up prioritize meds while you're lining up interventions. If her body is giving her that hard a time, then she needs some tools to get it under control so she can RECEIVE the good instruction she'll be given. Ditto for anxiety. Getting it under control makes everything else go better.

Edited November 29, 2019 by PeterPan

[PeterPan]

On the meds, you do a short acting med and it's a wash, in and out. We're not talking major commitments. It can be a safety issue. I don't know what's going on to get the psych to say SEVERE, but that to me means there are safety issues.

I like genetics, and I agree it's complex. Retained reflexes are a big part. But the meds are not fast either. She might end up getting referred to a pdoc or the ped might have his own process. Ours took MONTHS to work through, not a fast gig, not dispensing them for the asking. So she could make the call today and not even have meds till Jan/Feb.

Edited November 29, 2019 by PeterPan

[Lecka]

For Social Thinking ------ I have and have had (I accidentally left the 1st set behind with someone when we moved) We Thinkers Vol. 1 and Vol. 2.  I love them.  I love the Play book that goes with Vol. 2.  Love, love, love, love, love, love.  

But my son has turned 11 now and right now I am not seeing things that really look like a fit for him from Social Thinking.  

But I think it's worth looking at.  

I think their website does say to start with the social detective book?  But it is like -- it is really short and takes a few minutes to read.  It's not much.  I would not be satisfied with it.  

You can probably tell a lot from the samples if We Thinkers would be a good fit.

You could probably do a lot of activity ideas with your younger child, too.  There are a lot of ideas for pretend play and adapting pretend play for kids at a lower play level.  

My son really loved the shark book from Vol. 1, too.  

But here is the thing ----- for some kids of the exact same age, they would be fitting more with Superflex or Social Thinking and Me.  

Edit:  At my son's age, he has just turned 11, just in the past year probably his play goals have kind-of shifted into being conversation goals.  There is a lot of overlap because they are both back-and-forth.  But for kids who are talking more and having more back-and-forth conversation, I think they do go into the next age group of Social Thinking books, sometimes a little younger than the recommended age.  But if she would still like play things from We Thinkers, I think it is great and the skills are great skills.  

Edited November 29, 2019 by Lecka

[PeterPan]

12 minutes ago, Lecka said:

Edit:  At my son's age, he has just turned 11, just in the past year probably his play goals have kind-of shifted into being conversation goals. 

Yes. And MGW is doing talks on how to use her ThinkSheets to target emotional learning. She has her big red book, which is still a classic, but I think at this age it's more custom than oh this is what everyone goes through.

You've see the social rules books, right? And the new Peerspective book from Jen Schmidt at AAPC. I got this through the library https://www.aapcpublishing.com/products/let-s-talk-emotions?_pos=2&_sid=21b837f77&_ss=r&variant=23029042708528 and finally have my stuff prepped to go through it. Ds doesn't have a lot of emotional nuance, and the ability to talk about feelings or recognize them in others drives the next narrative language step.

[Jentrovert]

1 hour ago, Ktgrok said:

Oh, you may want to post about what state you are in, maybe in a separate post, to see what services are available. Here in florida an ASD diagnosis would qualify her for the Gardiner Scholarship which will give up to 10K a year for homeschooling/educational materials, curriculum, therapy, etc. 

WOW. I doubt we have anything like that. I'm in Oklahoma.

[Lecka]

I am moving to Oklahoma next year 🙂 

 

[Jentrovert]

1 hour ago, Lecka said:

What are your main goals/issues?  Behavior issues?  Rigidity?  Language skills?  Conversation skills?  Social skills?  

The interoception book is on a good sale right now on AAPC, I will link it.  I have not read it but it is very recommended 🙂 https://www.aapcpublishing.com/products/interoception-the-eighth-sensory-system?variant=23029042151472  

 

Our main issues in daily life right now seem to stem from rigid thinking. The behavior issues that we're having are primarily defiance and meltdowns . . . stomping, throwing and kicking things, pacing and repetitive language . . .  when she either doesn't want to do things or something has happened that doesn't fit into her set view of things. If she had more flexible thinking, more ability to identify the approach of this and head it off, a lot of this would no longer be an issue. She would also benefit from more conversation skills and social skills. 

I was unaware that she had language issues until the dx from the SLP. She talks constantly and I would have said that she carries on conversations fine. However, I can see that her conversations are not really very reciprocal. Now that she's getting a bit older (8) people are trying to converse with her more than just listening to her like you do a little kid, and I can see she has some trouble with that. And we often have to repeat things because she just doesn't "get it" the first time, even when she heard and understands the actual words.

[PeterPan]

Just now, Jentrovert said:

Our main issues in daily life right now seem to stem from rigid thinking. The behavior issues that we're having are primarily defiance and meltdowns . . . stomping, throwing and kicking things, pacing and repetitive language . . .  when she either doesn't want to do things or something has happened that doesn't fit into her set view of things. If she had more flexible thinking, more ability to identify the approach of this and head it off, a lot of this would no longer be an issue.

Ok, so just so you know, a BCBA might see it differently. Our behaviorist walked in the house and said the first thing is to REDUCE STRESS. The next thing is to be more predictable. All your school materials are language heavy, and they aren't conducive to ABA style chunks.

So it really might be you, not her, and no amount of Social Thinking materials will solve that or allow her to do what isn't in reach.

I don't know, I'm just looking at your sig and thinking how radically different it looks from what my ds does. Not that my ds is the epitomy or that there's one way. Just that we got a lot of peace when I realized how to chunk, be predictable, be clear, be within reach, and really work with him. He's still a pistol, but a lot of it was stuff on my end, not his. I have to be the flexible one.

Or put another way, stress impedes learning, stress increases rigidity, stress puts them in fright/flight, and stress will cause those behaviors. The language disability will result in behaviors too. You're going to need to go to visual.

So, given the amount of behaviors you're having and how negative things are, I would focus on pairing, joint attention, and possibly interoception. 

Can she say when she wants a break? 

Can she say how she feels?

Can she self-advocate and say what she needs to feel better and get back to being ready to work?

Fwiw, you might for this holiday season drop your school list (if you haven't already) and focus on finding materials that are small, chunked, predictable, clearly structured, things that work for her. She will need things to do (because otherwise she'll be bored) but right now it sounds like learning to use a visual schedule or checklist, learning how to point to a BREAK card and select a break, learning how to say how she feels (interoception) or point to the word, etc. would be highly valuable to you. I don't know where she functions, but for my ds that meant highly predictable, chunkable materials, things we could do one at a time. 

-really simple word searches (gr k5)

-graphing art

-dot to dots

-simple puzzles

-Highlights picture search magazines

-fuzzy velvet coloring

-math games

-workbooks I buy as ebooks and print so that I can hand him one page at a time

-speech/language materials we worked through in ABA fashion, small chunks

How Can You Effectively Teach Visual Schedules? LOVE Christine Reeve. Spend time here reading all her free info.

https://www.zonesofregulation.com/index.html  You can wrap your brain around it with pinterest if you want. Point is, if she's not in green zone, she's not ready to learn. Interoception builds the foundation to be ready to do Zones. 

                                            Stop That Seemingly Senseless Behavior!: FBA-based Interventions for People with Autism (Topics in Autism)                                       Behavior is not personal, and it might not be so much defiance is really poor communication. Given the severe communication disability here, that would be my first assumption. Don't make it about you. I agree they have volition, etc., but there's a lot of stuff we want to be addressing before we come down hard on if you wanted to you would/could. A child who is not on medication, whose sensory is set off, who can't communicate to self-advocate, who has a large load of language-heavy curriculum, who finds the world unpredictable, etc. is just not in a good position to choose to do what we're wanting. Also there's just the basic falling into the aut. We want to repair all that by PAIRING, by promoting communication, by going visual, by giving breaks, by being predictable.

When in doubt, play. Find out how she likes to play and play with her. Just saying. Give a break then play. You really can't go wrong with it.

[Jentrovert]

1 hour ago, PeterPan said:

How is her reading comprehension? That's going to be your real issue. Ds ended up a hyperlexic dyslexic.

Reading comprehension seems to be fine. It's rare that she needs to re-read to understand something. 

What did they say about anxiety? Is there any anxiety or language dropping or mutism or word retrieval on top of this? 

No, none of this.

Almost everything of language that needs to be done YOU CAN DO if you're game, if you have the time, if you have the money to buy the materials. I'm saying that particularly to you, that you CAN do this and should not underestimate your ability. However structure, variety, opportunities to generalize, different perspectives, there are a number of reasons why it can be good to build out a team rather than doing everything yourself. So if you LIKE the SLP and your dd clicks with her and you pick 1-2 things that SLP does WELL to have her FOCUS on, it can be really good. 

If her pet things are things you could do just as well yourself, that will be annoying. But it can be good and is worth the effort. She just can't do everything. You will HAVE to do language work yourself. If you do not feel comfortable doing that, then you could consider enrolling her to get the benefit of an IEP and a team effort at it. LANGUAGE IS EVERYTHING. Language is reading comprehension. Language is math. Language is writing. Language is pragmatics. Every single thing in her school day is touched by language, so if you look at my ds' IEP he has language goals across the curriculum. 

School IEP teams vary in how well they integrate. I went to a talk on IEP team collaboration and some schools are really kicking some SERIOUS BUTT on this. Like if I had a team offering what they were saying, I'd enroll my ds.   But you know, it's just something to see. The IEP process is 120 days of stress, and really they can't do a really spot on IEP till she's enrolled. But I'm saying be honest with yourself. I'm clearly not saying school is the only way (since I'm still homeschooling), but there's a lot to be done. If you aren't using an IEP team, then YOU are the IEP team. You have to think and collaborate and not section yourself off like oh the SLP will handle it. 

Honestly, at this point at least, I would actually prefer to do it myself. 🙂 It's more of a pain for me to coordinate appointments than it is to implement something. I actually enjoy learning about it and implementing things. BUT, one of my concerns is that as she gets older, it may be a strain on our relationship for it to all be me. I think for HER, it would be good to have a variety.

Remind us, how old is the chickadee? And is there ID, average, or a gifted IQ? She's 8, and we haven't had IQ testing but seems to be average.

.....................They can also help get your homeschooling going better. How is that going? Is it like no big deal or do you have issues? Then again, having someone in your home, seeing what is going on, giving you help, could be the thing.

We don't have any serious issues. I break up seatwork into small chunks and she spends much of the day playing. I mention in another reply that there is some defiance, and that happens sometimes during school, but normally it's in relation to regular life.

......................... How is her rapid naming? That's the one thing I always recommend. That's a simple 10 minute a day throw in. Just print my dropbox files, put in a notebook in page protectors, boom. 

😁 I printed that years ago (yeah, I've been reading a long time). It has improved a LOT.

You're pursuing meds? Have you had any issues with aggression?

No issues with aggression. I haven't had time yet to talk to my husband in detail about it all; I'm sure we'll consider meds.

...............Hmm, do you think she's sad? She's the same kid she was. She'll be HAPPIER after she does interoception work, because she'll know how she feels and how to feel better. She's gonna have an awesome life and you're going to do great at this.

I wasn't very clear on this. No, she's not sad now. I just meant that I'm bummed she even has to deal with it. My husband is on the spectrum and some things are just so darn hard. I wish she didn't have to deal with it at all. But, everybody's got something. And, my husband had zero help or intervention. We're already ahead.

As far as the your side, give yourself permission to grieve (yes) and also to say no to all this. There is not some mother litmus test, like good mothers do all this intervention themselves and junky ones send their kid to school. Kwim? It's really important that you and the other parent and your pastor/priest/whomever you trust sit down. Ok axe them. But just be honest about what you want and what is realistic. If you want to put her in school, you'll still be quite busy advocating. 

What you just found out is her needs are SIGNIFICANT. You found out she needs support (ASD), and significant interventions (language, OT, social, on and on). These are things normally done by a team, and the COST of doing them yourself will be your health, your sanity, your cooking, your laundry, your whatever. Do you have time/energy to add many more things to your day? What will you give up? Do you WANT to do that? 

It's ok to say the list is significant and put them in school. It's ok to choose to do it yourself. Now that you have full information and full evals, you can look at the teams you can assemble both ways and make that CHOICE. I wouldn't force yourself to do this if you're not into it or you think a school team would be better than the private team you could assemble. You're still an awesome mother and going to be doing a lot of work either way.

Such good advice, thank you. At this point in time, I don't want to put her in school. I think right now we can do better. These posts have helped me clarify a lot of my thinking; I got kind of deep into thinking it ALL. needs to be done NOW.   lol That's crazy-making!

 

I shortened above to answer some of the questions, but I'm reading it all and taking notes!

[PeterPan]

14 minutes ago, Jentrovert said:

She talks constantly and I would have said that she carries on conversations fine.

I don't remember the extent of her testing. Was it only narrative that flagged or more? We had somebody saying they were diagnosed DLD with only narrative, and I was taken aback. There should be more involved, seems to me. 

ABA usually involves running something like the VB-MAPP or another tool that hits skills through age 5. A dc can *script* and have memorized langauge but fail an expressive language test like the SPELT. She could have memorized tv, audiobooks, etc., hence the ability to monologue. So if you do a MLU and write down everything she's saying, they'll see a difference in MLU in monologues vs. when she's replying to someone in really novel conversation. The syntax, complexity, etc. may drop.

So my ds had a ton of language, all memorized. It's a dangerous position because they don't understand at the word and bits of word levels to go forward. We had to do a lot of rebuilding, which I've had larger threads on. What we did was stuff they would hit in very thorough ABA, sure. But as your dc ages out, they might *assume* she has those skills and not bother. So then it falls to the SLPs and means you use SLP materials. Same stuff, just different names.

[PeterPan]

Reading comprehension is a funny thing. My ds *seemed* to understand. He could answer multiple choice questions. Then when you said tell me what you read or draw a picture of what you read, he was TOAST. So on the really bright kids, you have to dig to find these issues. It's NOT wise to assume, kwim? You'd rather be thorough.

[Rosie_0801]

7 minutes ago, PeterPan said:

Ok, so just so you know, a BCBA might see it differently. Our behaviorist walked in the house and said the first thing is to REDUCE STRESS.

Or put another way, stress impedes learning, stress increases rigidity, stress puts them in fright/flight, and stress will cause those behaviors. The language disability will result in behaviors too. You're going to need to go to visual.

Can she say when she wants a break? 

Can she say how she feels?

Can she self-advocate and say what she needs to feel better and get back to being ready to work?

 

 

This. Because this is what stress does to all humans.

Make sure you don't get stuck into a system that teaches her to self advocate and also refuses to respect the boundaries she's setting. That only makes things worse.

 

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.

 

[PeterPan]

That would be unlikely for there to be *no* anxiety. Just saying. Sometimes anxiety is there and maybe it doesn't look like we're thinking it would look. With my ds, it doesn't look like worried over the polar bears or whatever, kwim? For him it results in that need for predictability and a plan, the BEHAVIORS you were describing. Those behaviors you listed, to me, sound like stress behaviors and she's stressed because she's anxious. It's something to read about or put a little flag on and think about, because autism and anxiety go together. If your methods set off her anxiety, you get behaviors.

Another way to tease that apart is as you guys figure out what makes her feel better. What they'll say (and I'm not saying it should be this tight, just that it's interesting) is that if a COGNITIVE solution helps (changing their thoughts, having a plan, etc.), then it was the anxiety. If a SENSORY thing is what solves it, then it was the autism. It's not that tidy, because autism and anxiety interweave and we expect anxiety to some degree. But it's interesting to ponder what is actually helping: spinning lights or changing her thinking? Kwim? So people will see my ds flipping out and they'll hand him a spinning light up toy and be like oh this should help. My ds needs cognitive strategies as well. And maybe he needs sensory, but he's so hyporesponsive he doesn't even realize what sensory would make him feel better, meaning he's less likely to realize it's helping meaning he's less likely to choose it. 

Anyways, it's a rabbit trail and sort of in the deep end. Come back in a year on that. 

[Jentrovert]

3 minutes ago, PeterPan said:

Ok, so just so you know, a BCBA might see it differently. Our behaviorist walked in the house and said the first thing is to REDUCE STRESS. The next thing is to be more predictable. All your school materials are language heavy, and they aren't conducive to ABA style chunks.

So it really might be you, not her, and no amount of Social Thinking materials will solve that or allow her to do what isn't in reach.

I don't know, I'm just looking at your sig and thinking how radically different it looks from what my ds does. Not that my ds is the epitomy or that there's one way. Just that we got a lot of peace when I realized how to chunk, be predictable, be clear, be within reach, and really work with him. He's still a pistol, but a lot of it was stuff on my end, not his. I have to be the flexible one.

Or put another way, stress impedes learning, stress increases rigidity, stress puts them in fright/flight, and stress will cause those behaviors. The language disability will result in behaviors too. You're going to need to go to visual.

So, given the amount of behaviors you're having and how negative things are, I would focus on pairing, joint attention, and possibly interoception. 

Can she say when she wants a break? 

Can she say how she feels?

Can she self-advocate and say what she needs to feel better and get back to being ready to work?

Fwiw, you might for this holiday season drop your school list (if you haven't already) and focus on finding materials that are small, chunked, predictable, clearly structured, things that work for her. She will need things to do (because otherwise she'll be bored) but right now it sounds like learning to use a visual schedule or checklist, learning how to point to a BREAK card and select a break, learning how to say how she feels (interoception) or point to the word, etc. would be highly valuable to you. I don't know where she functions, but for my ds that meant highly predictable, chunkable materials, things we could do one at a time. 

-really simple word searches (gr k5)

-graphing art

-dot to dots

-simple puzzles

-Highlights picture search magazines

-fuzzy velvet coloring

-math games

-workbooks I buy as ebooks and print so that I can hand him one page at a time

-speech/language materials we worked through in ABA fashion, small chunks

How Can You Effectively Teach Visual Schedules? LOVE Christine Reeve. Spend time here reading all her free info.

https://www.zonesofregulation.com/index.html  You can wrap your brain around it with pinterest if you want. Point is, if she's not in green zone, she's not ready to learn. Interoception builds the foundation to be ready to do Zones. 

                                            Stop That Seemingly Senseless Behavior!: FBA-based Interventions for People with Autism (Topics in Autism)                                       Behavior is not personal, and it might not be so much defiance is really poor communication. Given the severe communication disability here, that would be my first assumption. Don't make it about you. I agree they have volition, etc., but there's a lot of stuff we want to be addressing before we come down hard on if you wanted to you would/could. A child who is not on medication, whose sensory is set off, who can't communicate to self-advocate, who has a large load of language-heavy curriculum, who finds the world unpredictable, etc. is just not in a good position to choose to do what we're wanting. Also there's just the basic falling into the aut. We want to repair all that by PAIRING, by promoting communication, by going visual, by giving breaks, by being predictable.

When in doubt, play. Find out how she likes to play and play with her. Just saying. Give a break then play. You really can't go wrong with it.

 

Oh, I haven't updated my sig in a while. But, yes, I take your point. Basically I've just been adapting things to her attention span and need to move, not really using anything actually different except Barton. I need to take a fresh look at things in view of what we know now. Your last paragraph, last two, is exactly what I've been pondering this afternoon. What we've been doing is all wrong for her, or at least the implementation is wrong. I need to completely change my view of things, including her behavior, to account for what I know now. I also need to give her a lot more room and tools to self-advocate, and be much more predictable. 

[PeterPan]

3 minutes ago, Rosie_0801 said:

Make sure you don't get stuck into a system that teaches her to self advocate and also refuses to respect the boundaries she's setting. That only makes things worse.

YES. And that's why I strongly encouraged op to pursue interoception and self-advocacy BEFORE putting this bright dc in therapies. The school system, therapies, and ABA are largely predicated on the SHUT UP approach to behavior. I say to do it, you shut up and do it. And we're taking kids with a language disability, telling them they need to self-advocate, and then putting them with people who are like shut up and do what I said. 

There's a place for shut up, but for my ds it has been more like a stage to wrap his brain around, not a first step. To go in a mainstream setting (or to work with people who are not ASD trained) they have to be ready for this. But if our goal is cognitive, understanding, self-advocacy, we have to protect and nurture that. 

We have changed/fired workers when my ds said he was bored. He was legit right. We have changed materials used. Words have to MATTER and have POWER or why use them??? 

When you do the interoception work and work on pairing, you're rebuilding communication. At that point, words have to have power or why bother? It becomes collaborative. Most interaction is top down, not collaborative. The people who work *best* with my ds are collaborative. 

[Jentrovert]

9 minutes ago, PeterPan said:

I don't remember the extent of her testing. Was it only narrative that flagged or more? We had somebody saying they were diagnosed DLD with only narrative, and I was taken aback. There should be more involved, seems to me. 

ABA usually involves running something like the VB-MAPP or another tool that hits skills through age 5. A dc can *script* and have memorized langauge but fail an expressive language test like the SPELT. She could have memorized tv, audiobooks, etc., hence the ability to monologue. So if you do a MLU and write down everything she's saying, they'll see a difference in MLU in monologues vs. when she's replying to someone in really novel conversation. The syntax, complexity, etc. may drop.

So my ds had a ton of language, all memorized. It's a dangerous position because they don't understand at the word and bits of word levels to go forward. We had to do a lot of rebuilding, which I've had larger threads on. What we did was stuff they would hit in very thorough ABA, sure. But as your dc ages out, they might *assume* she has those skills and not bother. So then it falls to the SLPs and means you use SLP materials. Same stuff, just different names.

 

I'll have to check the report, but I don't think it was only narrative.

 She DOES do a ton of quoting tv shows and other things. 

[PeterPan]

3 minutes ago, Jentrovert said:

Your last paragraph, last two, is exactly what I've been pondering this afternoon. What we've been doing is all wrong for her, or at least the implementation is wrong. I need to completely change my view of things, including her behavior, to account for what I know now. I also need to give her a lot more room and tools to self-advocate, and be much more predictable. 

I was rough/blunt, but I didn't mean to be. I know it's hard. It took me 3 years to find a groove with ds. Seriously. And you're standing on our shoulders and like well I should be able to figure this out, lol. 

I think the interesting thing is when you grapple with the principles, grapple with your dc, and then find your own unique way. I have how *I* get there, but that doesn't mean there's not more than one way, kwim? But there are basic concepts:

-chunks

-predictable

-visual schedules, clear plan, definite end

-clear way to ask for breaks

All of this reduces anxiety. In our state, the way services work, we can hire providers who are supervised by a BCBA who will do the academics. When I first started watching them, I was like dude that's MEAN!!! I had to realize how it could look for me and be authentic and real and engaging. These were lower level workers and I'm a masters level teacher. Not that I have degrees, haha, just that I've been at it long enough and bring myself to the table.

You're teaching two? Is the other on the spectrum? Are they bio siblings? Just trying to picture what you're dealing with to make suggestions on how that might look.

One of the concepts we talk about is environmental control. We dropped behaviors 50% by changing the environment. I've posted pictures behavior. Small room, dedicated to him, clear break spaces, low visual stimulation, remove the clutter.

[Jentrovert]

10 minutes ago, Rosie_0801 said:

 

This. Because this is what stress does to all humans.

Make sure you don't get stuck into a system that teaches her to self advocate and also refuses to respect the boundaries she's setting. That only makes things worse.

 

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.

 

Quoting because I can't like. All good, but especially the bolded

[PeterPan]

4 minutes ago, Jentrovert said:

 

I'll have to check the report, but I don't think it was only narrative.

 She DOES do a ton of quoting tv shows and other things. 

Well there you go. Have I already bored you with the stuff on echolalia and language development (gestalt vs parts/whole)? She's learning whole to parts, so you have to flip and work on the parts.

Nice thing is, SLP materials for that are easy to chunk and do ABA style. Those were great months working through that stuff. Very structured. 

[Lecka]

If she likes to play, I would look at We Thinkers from Social Thinking.  There are a lot of ways to work on being more flexible with playing.

This is generic but — try a schedule and warnings before transitions.  It can go a long way.  A schedule can be like “here is what we are doing over the next bit of time.”  It doesn’t have to be really planned out or be planned a long way ahead of time.  

[Jentrovert]

7 minutes ago, PeterPan said:

YES. And that's why I strongly encouraged op to pursue interoception and self-advocacy BEFORE putting this bright dc in therapies. The school system, therapies, and ABA are largely predicated on the SHUT UP approach to behavior. I say to do it, you shut up and do it. And we're taking kids with a language disability, telling them they need to self-advocate, and then putting them with people who are like shut up and do what I said. 

There's a place for shut up, but for my ds it has been more like a stage to wrap his brain around, not a first step. To go in a mainstream setting (or to work with people who are not ASD trained) they have to be ready for this. But if our goal is cognitive, understanding, self-advocacy, we have to protect and nurture that. 

We have changed/fired workers when my ds said he was bored. He was legit right. We have changed materials used. Words have to MATTER and have POWER or why use them??? 

When you do the interoception work and work on pairing, you're rebuilding communication. At that point, words have to have power or why bother? It becomes collaborative. Most interaction is top down, not collaborative. The people who work *best* with my ds are collaborative. 

This. Thank you. This is part of what I've been trying to wrap my mind around this afternoon. 

[Lecka]

Wrt listening to kids when they self-advocate — if you don’t, why shouldn’t they stomp around?

Now — I think there needs to be some accommodation on both sides, but things do need to work for the child!  But not like — always getting their way.  Where it is reasonable because they have needs to be be taken seriously and respected.

Edited November 29, 2019 by Lecka

[PeterPan]

Ok, so this is just me, my take, but I think rather than re-thinking curriculum, instead think about what she NEEDS. I think if you do language intervention, work on joint attention (via RDI), and work on interoception, your whole take on what she needs will change. Like I think you'll just see it. Stuff that I wasn't sure about became totally obvious to me after we really got in sync.

If the language stuff in your homeschooling materials is aggravating her and causing behaviors, just pause it. I listed some things you can do. Those are HIGH MILEAGE for me with my ds. They're clearly structured, things we can do one at a time, engaging, build skills, and after we work through a pile like that he snaps better, interacts better. And it's just all FUN, kwim? 

It would be good to get her reflexes integrated, but if her body is still off the charts I'd be pursuing the meds. Just saying. I don't know, I'm on my 2nd hard kid and I'm 43, lol. The body gets tired.

[Jentrovert]

4 minutes ago, PeterPan said:

I was rough/blunt, but I didn't mean to be. I know it's hard. It took me 3 years to find a groove with ds. Seriously. And you're standing on our shoulders and like well I should be able to figure this out, lol. 

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

You're teaching two? Is the other on the spectrum? Are they bio siblings? Just trying to picture what you're dealing with to make suggestions on how that might look.

One of the concepts we talk about is environmental control. We dropped behaviors 50% by changing the environment. I've posted pictures behavior. Small room, dedicated to him, clear break spaces, low visual stimulation, remove the clutter.

 

I need blunt sometimes. 🙂 

Yes, I'm also teaching my son, 6. He's not on the spectrum; they're biologically half siblings. He may have some adhd going on, but not like her. There are some things I need to turn my attention to with him as well, but wanted to tackle getting dx for her first. He had an eval with the same SLP as she did. He was dx'd with dyslexia and dysgraphia, but no language issues. He's in Barton Level 2 now. 

Just last week, my husband (spectrum) suggested that we change some things so that she can do some work in her room (which is not cluttered or over stimulating) instead of at the kitchen table. He said that when he was young he loved having his room to do school in (his house growing up was quite cluttered) because it was quiet, peaceful, and HIS. 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).

[Lecka]

 

This is a short and sweet video with ideas about transitions.

I don’t “know” that this is a problem but it probably is.  

If — she is playing doing what she wants, then you want her to do something — is this a time she has issues?  Then transitioning strategies can help.  
 

“Why” she doesn’t want to do the things is also a reason.  
 

But if it is things that aren’t horrible in some way (high demands in some way? Like sensory?  Waiting?  Talking?), and just making the change, transition strategies are helpful.  This is a short video, it can be a big topic lol.  
 

[Jentrovert]

14 minutes ago, PeterPan said:

Well there you go. Have I already bored you with the stuff on echolalia and language development (gestalt vs parts/whole)? She's learning whole to parts, so you have to flip and work on the parts.

Nice thing is, SLP materials for that are easy to chunk and do ABA style. Those were great months working through that stuff. Very structured. 

Hmmm, no, I'll have to search for that, thanks!

[Jentrovert]

14 minutes ago, Lecka said:

If she likes to play, I would look at We Thinkers from Social Thinking.  There are a lot of ways to work on being more flexible with playing.

This is generic but — try a schedule and warnings before transitions.  It can go a long way.  A schedule can be like “here is what we are doing over the next bit of time.”  It doesn’t have to be really planned out or be planned a long way ahead of time.  

 

I'll take a look at We Thinkers, thanks. Oh yes, I definitely give warnings and let her know what's happening. Each day we discuss what's going on that day and week. (actually, this conversation happens several times a day. We do have a calendar she can look at, but it helps her more to talk about it.)

[Rosie_0801]

17 minutes ago, PeterPan said:

When you do the interoception work and work on pairing, you're rebuilding communication. At that point, words have to have power or why bother? It becomes collaborative. Most interaction is top down, not collaborative. The people who work *best* with my ds are collaborative. 

 

Collaborative, yes. Because, oddly enough, we think we are people and equally human to everyone else around. We don't like being treated like second class citizens and that makes it hard for us to learn to behave appropriately submissive. (Which means behaving like a victim while protecting the person in charge from knowing they are doing this to you.) You've got no idea how often that is expected of us, even when we are grown up. (Unless you have the same experience, in which case take "you've got no idea" as an expression of general frustration and pain.)

[PeterPan]

12 minutes ago, Lecka said:

Wrt listening to kids when they self-advocate — if you don’t, why shouldn’t they stomp around?

Now — I think there needs to be some accommodation on both sides, but things do need to work for the child!  But not like — always getting their way.  Where it is reasonable because they have needs to be be taken seriously and respected.

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.

[Jentrovert]

14 minutes ago, PeterPan said:

I don't know, I'm on my 2nd hard kid and I'm 43, lol. The body gets tired.

LOLOL I've been thinking I definitely should've started this whole kid thing earlier. 😂

 

[PeterPan]

6 minutes ago, Jentrovert said:

Just last week, my husband (spectrum) suggested that we change some things so that she can do some work in her room (which is not cluttered or over stimulating) instead of at the kitchen table.

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. 

[Jentrovert]

4 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.

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

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

 

😱 Two hours!?!?! Yikes.

[PeterPan]

6 minutes 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 so true. My ds does not get why someone else has the right to tell him what to do. To him he is equal to everyone, including me. 

I don't think my dd struggled so much with this. She was a little crunchy (not picking up that, hello, we are doing school every day), but ds really takes the cake. He'll literally turn it on you, like you told me what to do so now I will tell you what to do. A LOT is lost on him, lol.

And it makes him really fun and alive in a way. It's not the goal to squash it out, but more like to help him understand. We do a lot of work on understanding, sigh. (who is in charge in this setting, who makes the rules here, who enforces the rules here...)

[PeterPan]

2 minutes ago, Jentrovert said:

 

😱 Two hours!?!?! Yikes.

I drive 5+ hours round trip. I ain't doing it for no short sessions, lol. We started low (1 hour) and worked up to 2 hours. We've done it for years.