Processing asd as it pertains to learning

[mamashark]

Ok, I was going to journal about this but thought if I did a brain dump here, I might be able to get some more experienced input. We have an appointment with a behaviorist in a couple weeks, but I wanted to try thinking through some stuff in the meantime, especially with people who aren't going to tell me to enroll him in the public school system so I don't have to worry about these behaviors. I'm reading Uniquely Human, which has been super helpful in understanding what I'm looking at, and helping me to adjust and process, but there's a lot to ponder and I just need to try to think through some basic every day stuff.

He doesn't like to struggle with anything, so we structure any "learning time" to be as relaxed as possible but he asks for reading and math daily so here are the issues I'm having with that.

For phonics we are having flexibility issues - I am following the progression in phonics pathways. He hates reading from a book so I use index cards, but we keep getting stuck: stuck on the number of words used in a sentences (I'm not reading that, it has too many words), the order of words in a sentences (no, I can't read that, you put that word in the wrong place), which word starts the sentences (I want to start this sentences with "I" again!!) which little words are used (I want to keep using the "was" card, put it back in the sentence!!) Does he think I'm trying to trick him? what is the foundational issue facing me here? Bribing him with treats will help sometimes, but it has to be a high enough value treat to motivate and I've run out of the artificial free marshmallow minis. After just a minute or two he'll get into silly mode and use a robot voice to sound out sounds and refuse to put them together into words. so I have to run with a single skill with as much "sameness" as possible until I run out of compliance and then we're done... so the fact that he's learning how to read at all is a bit miraculous to me...

Math, He refuses to play math games with me, and I don't know why. I do Ronit bird math games with my daughter and he flat out REFUSES to join in, like it's dangerous to his health or something. So I'm doing a little math mammoth with him since I already own it. I think he just gets weary after a few problems, but he insists on wanting to keep going. He likes using a number line to answer any addition problem he doesn't just know the answer to - and he's starting to memorize some, which he thinks is great fun to surprise me with a math fact that he just KNOWS. It's like he doesn't like to think. So the skill has has to be simple enough to not engage too much of his brain at once.  

He doesn't like writing numbers down unless he can write it perfectly and fine motor control is weak still even with the huge progress we have made in the past 9 months. But I figure that's skill based and will come in time, we still work on a lot of other fun fine motor things like coloring and playdough and cutting. He can write his name now - copying from a card, and he shows obvious pride at that in his church class.

[PeterPan]

Decreasing stress doesn't mean removing structure or expectations or that you can't have a plan or make demands. It means that you're controlling the amount of stress and keeping it within his ability to manage, ie. increasing SUPPORT. So I would tweak your "relaxed" to say supportive and decreasing stress. The person on the spectrum physically does not tend to handle stress well. So pacing, choice, balance (hard/easy), breaks, these are all really important. You can get a ton done when the support is high enough.

He's going to be more rigid when his stress is really high. My ds had behaviors before we started with the behaviorist that tend not to come out now. The controlling is compensating for his extreme stress. The world feels chaotic, so he's trying to bring it back into order. Your best bet there is to work on pairing, relationship, predictability. Just DO things with him. Games, nature walks, whatever he likes. Be reciprocal, collaborative, and just do stuff together. Get that stress down and he'll probably relax and be a bit more flexible. You'll also work on it, but lowering stress will help.

Back later

[PeterPan]

He doesn't sound like he's ready to learn in a group yet, so you'll want to teach him 1:1. 

For the motivators, honestly our behaviorist had our workers and me pair so WE became the motivators and reinforcers. We built relationships and paired and made OURSELVES valuable to him, so that he wanted time with us. Once time with us was valuable (because we could do anything, play air hockey, read books, have Beanie Baby wars, whatever), then we didn't need the tokens and stuff. Now sometimes I pull out a snack or whatever, but I try to be really careful. He gets BORED with anything done too much, so it loses its power. It's easier to have frisbees and balls and card games and things you know you like to do together from pairing and just take turn choosing. Make yourself high value.

[PeterPan]

It's good that you're starting with the behaviorist. I hope you like him/her. It takes time to chill some of these down and build trust and relationships. And that's relationships with the workers too, kwim? 

It might seem dark, but you'll come to the other side. My ds was like a feral cat when we started. He thrives on intensity of interaction, and with him sometimes more is more better. If your insurance will pay for you to get some hours, you might take them. You also have your dd to deal with, so you're going to be spread thin. 

[kbutton]

On 10/8/2018 at 2:10 PM, mamashark said:

He doesn't like writing numbers down unless he can write it perfectly and fine motor control is weak still even with the huge progress we have made in the past 9 months. But I figure that's skill based and will come in time, we still work on a lot of other fun fine motor things like coloring and playdough and cutting. He can write his name now - copying from a card, and he shows obvious pride at that in his church class.

A little bit out of order here...sorry.

On the writing, knowing if he has reasons for resisting motor tasks can be really helpful--OT/PT/VT stuff like crossing the midline, eyes not tracking, etc. 

To keep writing at a minimum, you can potentially scribe for him when you do longer work (if that goes well--I know that's a separate thing), but you can also do things on a version you can edit via ipad. I haven't done that, but I know that some people do that for Math Mammoth. Also, you can use number cards/tiles/magnets so that he can display his answers. Writing on a whiteboard is almost always easier for kids. Writing on a vertical plane is easier than writing on a horizontal plane. 

I do think that bringing up the perfectionism on this is a good thing to do with the behaviorist. You really want help getting more flexibility overall, and this is a good example for her about where it crops up.

Quote

For phonics we are having flexibility issues - I am following the progression in phonics pathways. He hates reading from a book so I use index cards, but we keep getting stuck: stuck on the number of words used in a sentences (I'm not reading that, it has too many words), the order of words in a sentences (no, I can't read that, you put that word in the wrong place), which word starts the sentences (I want to start this sentences with "I" again!!) which little words are used (I want to keep using the "was" card, put it back in the sentence!!) Does he think I'm trying to trick him? what is the foundational issue facing me here? Bribing him with treats will help sometimes, but it has to be a high enough value treat to motivate and I've run out of the artificial free marshmallow minis. After just a minute or two he'll get into silly mode and use a robot voice to sound out sounds and refuse to put them together into words. so I have to run with a single skill with as much "sameness" as possible until I run out of compliance and then we're done... so the fact that he's learning how to read at all is a bit miraculous to me...

Am I remembering that Phonics Pathways is a scripted curriculum? I personally don't find scripted stuff to be easy to use with difficult to teach/flex kids. Are you comfortable deviating from the script (if I am correct that there is one)? 

A behaviorist can help you figure out if this sort of thing is a hill to die on vs. working on flexibility in another way. It could be that this is an important area to gain flexibility, but the behaviorist sees a backdoor way to get there or a different skill that you need to be successful here. Then, you might have to do phonics differently or something to not set up a situation where he is going to "win" in a way that reinforces rigidity.

First, I am glad you have some fairly easy to use "high value treats." My son seriously had nearly nothing like that I could work with! You have a real positive there--now you need a steady supply, lol! 

Totally spitballing ideas here, could you publish ahead of time some kind of idea he can buy into, such as a theme of the day with phonics? Or, "I choose/you choose" sorts of approaches? So, with a theme, maybe he could have a day where he does sentences with an I/was or whatever really floats his boat, but another day, you use something else to start them. But he'd know ahead (maybe the I theme could be tied to multiple subjects), and knowing ahead would give him some time to adjust his expectations. The choosing thing would be that he chooses x number of times, and then it's your turn to choose something. You can even pep talk him about what you'll choose--"I have to choose from this stack of cards we know you can read already."

Also, do you have a way of showing him progress from start to finish--some of these kids don't get time. You have to train their concept of time, but you can use things to show the passage of time, such as moving an object on a sliding scale, say 5 to 1, and when he gets to one, he's finished. So, you could  have him move a space closer to 1 for every 2 cards he uses, or whatever works for you.

On wanting to use the word cards over and over--I would try to make this a positive. He's comfortable with those words, more than likely. If he sees that a "long" sentence has I or was in it multiple times, maybe the sentence feels more doable, for instance. I didn't teach my kiddo with ASD to read--he actually learned in Montessori preschool and then refined it at a brick and mortar school (small Christian school). My second son, who has his issues but isn't autistic, HATED long sentences, so we'd work on individual word cards, and then we'd put those word cards in sentences. Then I could tell him that he already knew all the words, he could see that they were the same cards, etc. You can also split a sentence up into phrases and them combine phrases to build confidence.

Some kids just really get anxious about being wrong, and I think it's not unusual for a child with autism to not have enough trial and error data in their own mind to be sure they understand WHY they are right and WHY they are wrong. My son needs more "rights" than typical to feel confident, AND he needs to generalize that correct answer to many scenarios before he feels confident that he will always know that information no matter when it crops up. He also needed to see why wrong didn't work, but he didn't want to be the one wrong. Maybe that is part of what is happening with your son.

Quote

Math, He refuses to play math games with me, and I don't know why. I do Ronit bird math games with my daughter and he flat out REFUSES to join in, like it's dangerous to his health or something. So I'm doing a little math mammoth with him since I already own it. I think he just gets weary after a few problems, but he insists on wanting to keep going. He likes using a number line to answer any addition problem he doesn't just know the answer to - and he's starting to memorize some, which he thinks is great fun to surprise me with a math fact that he just KNOWS. It's like he doesn't like to think. So the skill has has to be simple enough to not engage too much of his brain at once.  

Some kids really don't like games. My son just wants to get things done. Games are not all that fun for him in academics, though he would play now and then. The other thing is directions--if you play a game, you not only have to internalize the concept, you have to internalize the rules. That kind of thing drove my son nuts. He wants to change gears as few times as possible during on lesson (transitions), and he wants the learning activity to be learning math or whatever, not learning rules for something else. 

I would caution about using only one tool for solving math problems--number lines are great, but if a child fails to generalize to other types of thinking, it can become a rigidity thing or the student even over-generalize by applying a rule to things that the rule doesn't fit. But, that's not a given--a behaviorist can help you figure that out. It's sort of like when kids memorize something by where it is on a piece of paper vs. because they can read it or something like that. My kids were fast to memorize that kind of stuff, and then they really actually missing the whole point. (I have a kiddo that plays music by ear, for instance, and it's hard to know when he's sight reading vs. playing by ear, and he needs both skills.)

In general, I strongly recommend listing all the things that are difficult and then sorting them in life vs. academic lists. Then maybe group similar things. At some point, you could label them if you have words. If not, that's a great place to start with the behaviorist--"Why is this situation bothering me so much--is there a word for this kind of behavior?" At some point after you've sorted, rank things or show how they are intertwined (one leads to the other)--if you don't see these connections, don't stress. If you do, it can really be helpful. You might not even be able to see it all--with these kids, you really do adjust your own behavior without even knowing it. But anyway, if you can sort of rank things in intensity by what bothers you, your family structure, your other kids, school, church, etc., then it will help a behaviorist see a big picture place to start working on techniques. You have to be able to be consistent with ABA, and if you feel like you can pinpoint what's the most problematic, and the BCBA can show you how working on x or y will yield better things, then that alone is a HUGE step forward and is motivating. Also, something might be a "minor" thing in the grand scheme of life but drive you batty. That's totally okay--you can prioritize things for a variety of reasons. There isn't a perfect way forward.

I think using some kind of matrix could help too--this link goes to an image search for an urgent vs. important matrix. You might find that you can categorize needs this way too. https://www.google.com/search?q=urgent+important+matrix+template&rlz=1C1KYPB_enUS597US601&tbm=isch&source=iu&ictx=1&fir=I4_38aNJ5hSQIM%3A%2CzlyTjWcHOlgBjM%2C_&usg=AI4_-kSVZRo4CjOUSgDwhh5NhfK0MHbShg&sa=X&ved=2ahUKEwiSva3ek_rdAhUh3IMKHZB1BNAQ9QEwAXoECAYQBg#imgrc=is0ceD1xGzKx9M:

 

[mamashark]

Thanks KButton, that gives me a lot to think through, and a great systematic way to do so. I appreciate your thoughts.

Phonics pathways isn't scripted, it's more of a book of words/phrases/sentences to read in a systematic order and almost no script or direct teaching at all. I make what I want of each page and lesson. So it's super simple for me to take and organize it however I want. I've put a lot of the Barton blending strategies into the beginning pages, because I think those strategies are that valuable. 

Your caution about using only one tool for math is something that I've been concerned about in a number of areas where his behavior is inflexible. Like how he simply cannot get in the car to leave his grandparents before everyone else is physically in the car. Becoming too rigid with that behavior is going to be a problem at some point. I need to just structure things more, maybe plan them out and put them on a visual chart so he knows ok today we are going to work with tokens, tomorrow we will work with the number line, and on Friday we will be playing with the cuisinaire rods. Or something like that...

Your thought about not being comfortable with trial and error data about why he is right and why he is wrong is a curious one, and one that makes total sense. I am going to have to play around with that and try to give him more language to understand each. 

[PeterPan]

Your behaviorist is going to bring something to this. A lot of what you're describing is anxiety. He's trying to control the situation because he's not comfortable enough to let you lead. What you actually do then is build TRUST by working on pairing, relationship, collaboration. When you do that stuff, his need to hyper-control (who goes in the car, what comes next, etc.) will improve. 

It also doesn't really matter who does that work. If you can get some ABA hours or bring in the behaviorist, they'll be working toward those goals. The more people do it just overall with him (anyone on the team), the more his stress will go down and the easier he'll be to work with.

On the math manips, you can offer choice. Choice is actually a really important thing, because it's teaching them to collaborate, to have give and take. Like if he's saying hey I want the rods and only the rods, then you're gonna say hey we've done those 5 days in a row now and could we *first* use animal counters for the 1st activity and *then* use the rods for the 2nd activity... So then you're bringing in 1st then and him realizing his words have power if he will use them.

The higher the IQ, the more you have to work on collaboration, choice, etc. I was talking to the psych doing my ds' counseling, and she says that's the kind of overarching stuff she weaves into all her sessions, that if you use your words and ask, people will listen and care and work with you. 

We want to *model* the flexibility we want him to have. So if you want him to be flexible on math manips, model it. Maybe he does the problem with his and you do it with a different and then you trade for the next problem. Model flexibility and compromise and working together.

Edited October 10, 2018 by PeterPan

[PeterPan]

As a total aside, the $140 an hour psych counseling we're doing now, with a psych who has significant experience with gifted + ASD, has been the BEST THING. We've gotten major breakthroughs in how he is to work with, and that's really a lot of it. She's not doing your regular ABA stuff or working on DTT or filling in language holes or any of the stuff the rest of the team was doing. He's just old enough now that she can get in his head and figure out what was glitching and what would be pivotal. It has made him easier to collaborate with, and that level of interaction and communication and collaboration makes it easier in turn for me to step up demands.

I don't know how young you can start that. My ds has had significant language issues and we only just this year have had the funding level in our disability scholarship to bring on this level of services. But if you've got access (via insurance, whatever) when the time comes it could be really valuable to you. It's something to keep on your radar. The higher the ability of the dc, the more you have to step in with these supports to get them there. Every time I bring in a new person, they bring a fresh vision on what could be. They step up those demands and bring in enough supports to get him there. I'm not just doing it alone.

[mamashark]

10 minutes ago, PeterPan said:

As a total aside, the $140 an hour psych counseling we're doing now, with a psych who has significant experience with gifted + ASD, has been the BEST THING. We've gotten major breakthroughs in how he is to work with, and that's really a lot of it. She's not doing your regular ABA stuff or working on DTT or filling in language holes or any of the stuff the rest of the team was doing. He's just old enough now that she can get in his head and figure out what was glitching and what would be pivotal. It has made him easier to collaborate with, and that level of interaction and communication and collaboration makes it easier in turn for me to step up demands.

I don't know how young you can start that. My ds has had significant language issues and we only just this year have had the funding level in our disability scholarship to bring on this level of services. But if you've got access (via insurance, whatever) when the time comes it could be really valuable to you. It's something to keep on your radar. The higher the ability of the dc, the more you have to step in with these supports to get them there. Every time I bring in a new person, they bring a fresh vision on what could be. They step up those demands and bring in enough supports to get him there. I'm not just doing it alone.

 

I realize this as I read your suggestions and examples. We are in the process of building out his team again, and I am feeling much more steady on my feet this week. I know I'm going to have to find a good psych, the lady we worked with who gave us the diagnosis is not an option at this point because of the communication issues we had, but that's a secondary issue to building a support team right now. I need Speech, and OT first, the ABA program has a frustrating waiting list so I'm on that... I don't know how to find another private behaviorist beyond that, but I am in the process of getting into a program where a rep will be assigned to his case to help us navigate what services are available in our area and help us find the team members we need to service his specific needs. 

 

[PeterPan]

Is anybody doing play-based therapy near you?

[kbutton]

5 hours ago, mamashark said:

Thanks KButton, that gives me a lot to think through, and a great systematic way to do so. I appreciate your thoughts.

Phonics pathways isn't scripted, it's more of a book of words/phrases/sentences to read in a systematic order and almost no script or direct teaching at all. I make what I want of each page and lesson. So it's super simple for me to take and organize it however I want. I've put a lot of the Barton blending strategies into the beginning pages, because I think those strategies are that valuable. 

Your caution about using only one tool for math is something that I've been concerned about in a number of areas where his behavior is inflexible. Like how he simply cannot get in the car to leave his grandparents before everyone else is physically in the car. Becoming too rigid with that behavior is going to be a problem at some point. I need to just structure things more, maybe plan them out and put them on a visual chart so he knows ok today we are going to work with tokens, tomorrow we will work with the number line, and on Friday we will be playing with the cuisinaire rods. Or something like that...

Your thought about not being comfortable with trial and error data about why he is right and why he is wrong is a curious one, and one that makes total sense. I am going to have to play around with that and try to give him more language to understand each. 

I am glad you can make the reading what you need it to be. I am probably mixing that resource up with another one that I tried with kiddo #2 that was scripted.

My insights are really meant to blend with what Peter Pan is saying--my son was diagnosed late, and while she is totally right about the pairing, collaboration, etc., we had zero guidance on that and had to fly blind. The insights really are things that my son kind of thought--he is always looking for clues in his environment and not expecting order, lol! He has to be convinced it exists. Also, the collaboration and pairing was something we did with life skills because my son was really getting rigid at very early ages, whereas Peter Pan's experience unfolded differently. By the time we did school (pulled him out for 3rd grade and beyond), we'd gone through the "uh, oh, if we don't figure this out, there is no going back" phase and were just dealing with overload and residual issues with insufficient explanations--we were burned out and needed some specific tools. Later we also found out that we have significant language issues (which I'm not sure will ever be solved, frankly--I think the window is slamming shut for meaningful intervention). It sounds like you are more in the middle of that ramped up rigidity, and that it's tied specifically to academics. I agree that it can be anxiety, but I think my point about getting behind my son's need for data is that he tries to be systematic, and he even often realizes that something he's doing is not the typical way people do things--he just can't BE typical, and therefore, he needs another way. Knowing where he stands compared to other people has actually been something that helps him with his anxiety (that and ADHD meds that give him the focus to finish tasks). Some kids will not really be able to see those things, and they might find that they need more of the pairing, etc. My son sometimes could just be told something cut and dry about how people think/act and then feel better about it or be relieved that he now knows what he's trying to compensate for. We certainly have had (and still have once in a while) rigidity about academics, but we went through our serious make it or break it time with my son during toddlerhood/preschool. We are finding that academic issues at this point (early high school) are more about language gaps, trouble generalizing, etc. The rigidity is still there a little, but he's frustrated about things that are frustrating to most people at this point, lol! He just tends to have a little more entrenched response than is typical. He's also extremely flexible in other ways that kids his age are still working on. 

I know grandparents have been in denial. Do they tend to reinforce good things or negative things like the rigidity (either directly through expectations or indirectly through not using supports he needs)? Just curious--we had one set of grandparents that saw what we saw (though later--they all live away), and one set that constantly set precedents that we could not undo and that were NOT GOOD. Thankfully my son did not pull the kind of behavior they reinforced with other people, just with them. We did find that we had a VERY difficult time giving my son tools he could use across the board in some circumstances. My son had the social awareness that other people's cars were theirs, not ours. But he didn't have the social savvy to realize that there were "all the time" rules about cars. So, if someone overruled me about letting him open their trunk or climb inside, he would take their overruling me as law--it was their vehicle (and he was right--he just didn't get that we're his parents regardless of who had the vehicle, sigh!). That was super frustrating. We made sure people coming over knew about this issue though. It was mostly limited to vehicles (special interest). I had some people not listen, think it was funny that he would do x or y with the vehicle, and then get mad at me when he did things they didn't like. I would just point out that they overruled me, and that's what happens when you overrule a parent, lol! 

On the grandparent front, the lack of support from one set has directly affected our relationship, and on a practical level, I didn't want my son around them. It was not beneficial for them to constantly undermine me. 

So, you might also ask your behaviorist/team about outside relationships and rules, such as with grandparents. They probably have some good tips.

 

 

[mamashark]

19 hours ago, PeterPan said:

Is anybody doing play-based therapy near you?

No, not that I can find closer than an hour drive. But I do have music therapy within a half-hour, I might look into that. I've figured out the insurance gave me incorrect info so the cost for therapy should be nothing if it is billed correctly (for OT, Speech, and PT anyway) so I have some wiggle room with finances now.

[PeterPan]

11 hours ago, nwahomeschoolmom said:

I'm sorry if this is off-topic, but does anyone know why kids with ASD resort to silly voices? 

If it makes you feel any better, the 150 IQ kids the Interoception author was working with were doing it too. Totally cracked me up. My ds does it. He'll sometimes spend a month doing a british accent or go all robot, complete with the stimming arms. He has a high pitched bird way of talking to go with when he's flapping. I figure it's just the merging of the creativity and the moment. It's a defensiveness sometimes too, a protection when stressed. 

11 hours ago, nwahomeschoolmom said:

DS is losing stickers in our homeschool for silly voices because its such a problem on certain days...its not like an occasional funny thing.

You use a behaviorist? Does your data show your method is working? When he was young we fiddled with tokens and things. Now we don't. We use relational motivators like being able to do things with me, etc. Anyways, you always go back to your data and whether your data show your method is working. What our behaviorist has us do for annoying stims (which is the category I'd put that into) is to put a time limit to it and then redirect and substitute with something that serves a similar purpose but is less annoying. So we're gonna say something like "Hey, we're gonna do that for 5 minutes and then when the timer goes off let's switch to... " But that can really mean I have to step it up and do something equally intense that matches the stim. Like I may need to be willing to dance silly or play Nintendo or read a highly preferred book or whatever. You can match the intensity of the stim as you transition him to another thing. Then you can step it down to something less intense and more calm. 

Some people stim or do repetitive behaviors because it feels good too. Like you can look in the moment (or in hindsight) and say what was the function of the behavior. The book Stop that Seemingly Senseless Behavior is your go to book for analyzing functions of behaviors, HIGHLY recommend. Cannot emphasize enough how helpful this book is.

[kbutton]

My son does voices for fun, I think. He has always LOVED to play with sound and would do so as an infant. He replicates not only accents but sounds of all kinds. If radio shows were still in their heyday, he would be hired in a heartbeat to make sounds for shows, lol! 

In his case, it's not really a problematic behavior--it's generally the right time and place or at least a non-issue (such as reading out loud but totally understandable and otherwise behaving in a composed manner). In school, it might be quirky or annoying, but I think that he'd probably quit it if he got much flack.

[PeterPan]

Shark hasn't gotten a support level assigned yet, correct? When she does, some of this might start to make sense. 

[mamashark]

4 minutes ago, PeterPan said:

Shark hasn't gotten a support level assigned yet, correct? When she does, some of this might start to make sense. 

No, we don't have a support level assigned yet. And the ABA lady told me they would do that but we are on the waiting list for probably December. 

I do have a behavior support rep assigned to him now, so he said he would look for other ABA programs nearby to see if any of them have openings sooner.

[PeterPan]

I'm just saying don't be disheartened. There's a range on things and your ASD1 level of support kids need less support than ASD2. So if you're feeling like whoa I don't identify with that, this is so much harder, that's why, not that you're doing something wrong. With ASD2, you can do everything RIGHT and it's just, well the kid just takes significant support, hence the 2 meaning significant support. My ds' music therapist came out looking BLANCHED this week. They had a good time, but I was like wow he really wore her out! LOL And she's a total professional. 

Our behaviorist never lets her workers do more than 3-4 hours with a client, preferably 2-3. They just get too worn out. That's kids who need in-home services, that's your level 2-3. And we moms are on ALL DAY with that level of significant support needed. I do time with my ds, and then I NEED A BREAK. 

So you're not doing something wrong if it doesn't feel like it does with someone else's kid. Well maybe you are, lol. Maybe you just totally need to up your game, lol. Or, as one psych told me, you're gonna have to pull up the chair and reach higher! But even with my ds doing better, his support level is still 2. Like today, I was like GOOD NIGHT WHAT IN THE WORLD WENT WRONG??? I spent the whole morning going through all my tools like what did I miss, yesterday was fine, did he miss food, why is he stimming, why is he having a hard time... We think we figured it out btw. 

I do spend a lot of time thinking about ADHD meds. Like not so much anymore, but I was thinking about them again today. For some kids they make a big difference. My ds has significant aggression and a profile that doesn't respond well to stim meds (like would get more aggressive). And there's also that argument to want to get as far as you can cognitively before doing meds. But still, if they're on the table, it's another thing to talk through with your team, when that factors in, when you would go ok we've worked through our behavioral stuff.

For my ds, a lot of stimming is about regulating. So anything that helps regulate, like ADHD meds or regular sensory or things that help destress or whatever, is going the right direction. 

Edited October 11, 2018 by PeterPan

[mamashark]

13 hours ago, PeterPan said:

I'm just saying don't be disheartened. There's a range on things and your ASD1 level of support kids need less support than ASD2. So if you're feeling like whoa I don't identify with that, this is so much harder, that's why, not that you're doing something wrong. With ASD2, you can do everything RIGHT and it's just, well the kid just takes significant support, hence the 2 meaning significant support. My ds' music therapist came out looking BLANCHED this week. They had a good time, but I was like wow he really wore her out! LOL And she's a total professional. 

Our behaviorist never lets her workers do more than 3-4 hours with a client, preferably 2-3. They just get too worn out. That's kids who need in-home services, that's your level 2-3. And we moms are on ALL DAY with that level of significant support needed. I do time with my ds, and then I NEED A BREAK. 

So you're not doing something wrong if it doesn't feel like it does with someone else's kid. Well maybe you are, lol. Maybe you just totally need to up your game, lol. Or, as one psych told me, you're gonna have to pull up the chair and reach higher! But even with my ds doing better, his support level is still 2. Like today, I was like GOOD NIGHT WHAT IN THE WORLD WENT WRONG??? I spent the whole morning going through all my tools like what did I miss, yesterday was fine, did he miss food, why is he stimming, why is he having a hard time... We think we figured it out btw. 

I do spend a lot of time thinking about ADHD meds. Like not so much anymore, but I was thinking about them again today. For some kids they make a big difference. My ds has significant aggression and a profile that doesn't respond well to stim meds (like would get more aggressive). And there's also that argument to want to get as far as you can cognitively before doing meds. But still, if they're on the table, it's another thing to talk through with your team, when that factors in, when you would go ok we've worked through our behavioral stuff.

For my ds, a lot of stimming is about regulating. So anything that helps regulate, like ADHD meds or regular sensory or things that help destress or whatever, is going the right direction. 

Honestly, a year ago he would have probably needed a higher number than now, my gut says probably level 2 a year ago and level 1 now. But I'm still learning to see what I'm looking at. A year ago, we had major stimming, huge outbursts, lots of negative behaviors, each day brought me closer to seeing the autistic pieces. By the time we got to the first visit with the psychologist in January 2018 we were seeing hand-flapping when he was upset, and he would sit on the floor facing his chair in the sanctuary at church after Sunday school and rock his body while allowing his forehead to hit the soft seat cushion in front of him. My in-laws claimed he just needed spanked. That I was coddling him too much. After one particularly insidious conversation with them I browned an entire pound of ground beef from totally frozen. I had to peel my fingers off of the spatula when I was finished...Anyway that's where dietary intervention and OT work has helped. Even my MIL says he's a new kid. We obviously are still seeing things, but the diet keeps the intensity way down. He hasn't hurt me in months.

I got in touch with his old SLP, who was our PROMPT therapist when he was 2 years old and she was surprised. Went through her old notes and said she didn't have any notes of any hints of spectrum things at age 2 although by the time he was 3 she does have notes of me asking a lot more behavior type questions, but specifically said she has no recall or notes of issues with language, fascinations, or engagements. I also found in his medical record the autism screening they had me do somewhere around that age and he passed the screening with flying colors... I guess it's too stereotypical? No he doesn't stare at fans. No he doesn't ignore me when I call his name...I do recall bringing up behavioral issues with his pediatrician for the last several appointments we had with her (we left the practice after his 3 year old visit) and she told me at the time that he was going to be just fine, he was intense but still normal. 

The thing is, I can't say he regressed in behavior, it's more like he grew into himself... before he was born he was breech and his movements were different (odd) from every other kid (out of 4). As an infant his sleep was terrible. Forever. And I wore him all the time face into me because others getting into his face would freak him out and he would scream and scream so I would pull the fabric of the carrier over and tell people he was eating or sleeping. He was the kid who around about a year old would throw breath holding spells to try to prevent me from changing his diaper. He was intense. So as much as I'd like to say that one day he was fine and the next he wasn't, and go back and fix whatever broke at that point, he really showed signs of something neurological going on from before birth. High functioning, sure, but still something. 

 

 

[PeterPan]

58 minutes ago, mamashark said:

After one particularly insidious conversation with them I browned an entire pound of ground beef from totally frozen. I had to peel my fingers off of the spatula when I was finished...

I know! LOL My mom always told me to CLEAN when you're angry, so look out when I have really clean floors and stuff starts getting done, lol.

58 minutes ago, mamashark said:

I got in touch with his old SLP, who was our PROMPT therapist when he was 2 years old and she was surprised.

Our PROMPT SLP did the SAME THING. Don't even get me started. One, they are personally attached, see so much spectrum, sometimes have opinions (it's sad, it's overdiagnosed, blah blah), are working from a VERY bonded/paired position, only see him in one environment, are probably bringing in super high supports (hello, games and physical input for everything), have a consistent environment and routine that is highly predictable, on and on. No, she's not gonna see it. She doesn't want to see it and she's not in a situation with enough variety to catch on. She's not seeing him with his peers at the park, etc. She's probably also dealing with so much level 3 and CP and Downs and other stuff (because that's the broader market for PROMPT), that what she's really at least telling you is he's not level 3. So he's not level 3 support. That doesn't mean he's not on the spectrum.

58 minutes ago, mamashark said:

I do recall bringing up behavioral issues with his pediatrician for the last several appointments we had with her (we left the practice after his 3 year old visit) and she told me at the time that he was going to be just fine, he was intense but still normal. 

Your ped was not evidence-based in this. The studies show that parents pick up the subtleties of a spectrum diagnosis WELL BEFORE professionals. Just statistically. When you went in saying you were seeing it, you were.

58 minutes ago, mamashark said:

The thing is, I can't say he regressed in behavior, it's more like he grew into himself...

Yup, and since it's genetic, not something  you caused, that totally makes sense. My ds was very similar, with just this really different way he was as a baby that was hard to pinpoint. He had this social justice thing where he was ANGRY if you didn't do what he wanted. It wasn't like just upset like a baby should be but angry. And think about it, if he's not making all the connections a baby should make (picking up patterns, learning cause effect, figuring out how the world works), then yeah it would all seem random and unjust and unfair.

58 minutes ago, mamashark said:

High functioning,

Such an unhelpful term, eh? What's high functioning if you can't hold a job? I had some well-meaning person say that while I was on vacation. We're in the pool, having a nice time, and I just politely said hey if he's bothering your (nephew) just tell me or help your nephew say something because my ds has autism and won't catch on. She's like oh, I didn't know, he must be really high functioning! And people say this and don't realize the significant support, don't realize that IQ WON'T SAVE THEIR BUTTS when it comes to holding a job. Under-employment in the autism community is 80%. Chew on that. If he can't hold a job because he can't regulate emotions, can't understand social dynamics, can't handle stress, struggles with anxiety, won't leave the house, etc., he's still under-employed, no matter how high his IQ is and how great he looks compared to the next person. I just find the term not helpful, because it's too easy for the person then to gloss the SIGNIFICANT SUPPORT my ds needs. I will usually say something more accurate like "Hey's very bright but he requires significant support." That's the truth and it doesn't let people make pat assumptions.

I want to go back to the PROMPT thing. So you have an apraxia diagnosis? And how old is he? And are you still getting PROMPT? My ds is considered severe with his apraxia. We did PROMPT from ages 2-10, so 8 years (with breaks here and there). They did not address language, and the autism was causing significant language issues. That LANGUAGE will bump a person from support level 1 to 2. It's a major discriminator. It's going to underlie a lot of behavior. The higher the IQ (not being rude here but the truth), the more horrifically discrepant he will be. SLPs don't have scores to allow them to establish discrepancy by IQ, and they're not supposed to use lack of discrepancy in ID (low IQ, intellectual disability) to deny services. That protects the ID end, sure. But it doesn't protect your high IQ kids.

Think through the logic. The high IQ kids are expected to be functioning at a certain level for achievement testing, etc. How are they going to get there without the LANGUAGE?? They aren't. And when their language acquisition doesn't keep pace with their peers and their IQ drops (because the psych used a verbal IQ test instead of non-verbal), then you get under-scoring. So then you don't actually REALIZE just how astonishingly discrepant the kid is. I have yet to have a psych run a non-verbal IQ on my ds, even though a lot have seen him. Think about that. My ds utterly failed the TNL and SPELT this spring and his verbal IQ dropped 30 points between administrations (as his peers pulled ahead and his language disability became more obvious) and they STILL didn't run a non-verbal IQ. People don't even think. I should ask his current psych to do that. It would be interesting. Now that she has enough rapport with him that he's more compliant, maybe she could just throw it in. Maybe it's not reliable and doesn't correlate well? I don't know. I'm just saying the whole thing boggles my mind.

So anyways, I was operating under what they call the "praxis theory of autism" or this idea that the language was all there and that if we just did enough PROMPT it would all start pouring out. It's what underlies the now discredited RPM. Reality is, the language isn't there TO come out. And how do I know? When we handed my ds an AAC app (LAMP, $250, amazing) this spring before our major language intervention, he absolutely positively could not use it to get things out. Think about that. Try it. Go find some free language software and play with it and see. Maybe your ds is at a totally different place. Kids are different and this is just my ds. I'm just saying I had thought it was all the motor planning holding him back. In reality, he had memorized tons of language (tv shows, audiobooks, etc.) and his brain couldn't work through from whole to parts. Most people learn parts to whole. Our PROMPT SLPs were amazing with PROMPT, but PROMPT itself is only motor planning. IF your dc also has language disability, that needs its own intervention.

I couldn't find an SLP prepared to do what needed to be done, so I did it myself. I have a whole thread on it under narrative language and PeterPan. I have a linguistics background, so I'm like fine, I'll do it myself. We went through everything Linguisystems had for grammar, syntax, etc. They're actually speechie terms you can look up on that site. We worked 2-3 hours a day, every day, for several months. Now we're getting amazing things and lots of original speech. Getting reflexes integrated gave us a language bump to, but not like this. He started noticing spelling. Think about it. If you're understanding language at the whole level instead of each individual word, then the parts of words also have no meaning for you. He started getting rhyming, spelling, morphology, jokes. It was amazing. All from working on things we assumed he already understood but couldn't use expressively on his own with variety and flexibility. I have another SLP who is supposed to be working on language and instead she does stupid stuff like showing him videos and talking about social. I'm like HELLO I'm paying you to build language. They don't care. Building language is harder than showing videos and they want to take the easy way out and still be able to pat themselves that they did something. People don't think, aren't sequential, don't think through foundations and order of development. DON'T EVEN GET ME STARTED.

Mindwings has an autism-specific kit. I'm using it right now along with the SKILL Narrative kit by the Gillams that you can order through Utah State. SKILL is very well-organized, very clear. The MW kit is stronger on development, the actual language part, etc. I'm saying if you have the stomach for it they're actually complementary, which is how I'm using them. So I use SKILL's lesson on setting and then practice it using the setting elaboration graphic organizer from MW. Without that organizer, ds has NOTHING TO SAY about setting. Now maybe your ds is different, sure. I'm just saying that's where we're at. Ds is at a really early level of narrative if you look at the developmental sequence in MW. SKILL doesn't care about this. They just want to jump to the end, which makes no sense to me. So I'm slowing it down (which isn't what they say to do) and going to attempt to get him to apply the skills to picture books we've already read and maybe expository, THEN teach the next components with SKILL, hit the next developmental step in MW, and so on. At least that's what I'm doing. I may live to regret it, lol. Sometimes I'm really wrong in my nutty ideas, and sometimes I'm right, lol.

The point of that ramble was if they don't run the tests for things like narrative language, then you don't realize they're going on. So then with interoception issues plus narrative language issues, you can end up with a kid who's super bright but having these behaviors and you're like WHY and that will be why. And you won't realize it's discrepant unless you go hang with other kids of his IQ of his age and go OH MY. 

Google youtube and see. I have a friend who posted a video of their kid playing with a toy, and I'm like that is SO spectrum. I've watched the kid from a distance and assume the dc is on the spectrum but I say nothing because it's rude. So the parent posts this video and I'm like WOW you don't see how discrepant that is? So you just google that age playing with that toy (it's a currently made toy) and you find videos of unwrapping the toy and how kids that age play with that toy and what kind of language they use and what kind of social referencing (eye contact, joint attention, etc.) they use. Do you realize by age 4-5 children are doing VERY COMPLEX things with their play and language and social thinking? Michelle Garcia Winner showed video in her social thinking workshops where preschoolers would change roles, take turns, quickly take on another role, using tons of language, all stuff my ds couldn't do. When you see how it SHOULD be, then you get really angry and can go ok, my dc really has some gaps there. But we accept our kids right where they are and we're used to them and we're not seeing that gap. So sometimes you have to reconnect with where other kids are so YOU can see the skill gaps (joint attention, language, etc.) so you can get angry and force intervention.

 

 

Edited October 12, 2018 by PeterPan

[Lecka]

There is some kind of toddler autism screening my son also passed.  He doesn’t flap his hands, he doesn’t toe-walk.

It’s not a very good screening.  

My son definitely has autism, he was diagnosed with autistic disorder a few weeks before he turned 4.  

There is a video series showing very young children with autism, I can see it in my son.  When I look at old videos, I see it in some but not in others.  It can just depend on the day and what he is doing, in the old videos.  

http://www.autismnavigator.com/asd-video-glossary/

Also it’s worth checking out from the library, there is a book called https://www.amazon.com/Early-Start-Your-Child-Autism/dp/160918470X

An Early Start For Your Child With Autism.

If I remember correctly, this is the book I thought explained joint attention really well.  This is something where — for me at least — it is a crucial thing to see with little kids.

I will mention another resource also, it is called Autism Internet Modules.  There’s a requirement to make an account, but then it has a lot of good videos.  They used it as part of staff training in the school district I used to live in, it has some good overviews.  

https://autisminternetmodules.org/user_mod.php

 

[mamashark]

3 hours ago, PeterPan said:

I just find the term not helpful, because it's too easy for the person then to gloss the SIGNIFICANT SUPPORT my ds needs. I will usually say something more accurate like "Hey's very bright but he requires significant support." That's the truth and it doesn't let people make pat assumptions.

I  agree that it is not a super helpful term, and I will say that the more I read the more I realize that what the general public assumes autism to look like is really inaccurate. And I agree, some of the frustration I've had with grandparents not agreeing with the diagnosis is that I feel like they are dismissing the level of support that we provide him,  or simply don't see it. I don't know. I like your phrase, because I think that not everyone realizes what "support" looks like.

 

3 hours ago, PeterPan said:

I want to go back to the PROMPT thing. So you have an apraxia diagnosis? And how old is he? And are you still getting PROMPT?

No - he does not have an apraxia diagnosis. He benefited from PROMPT Therapy, but she wouldn't officially diagnosis him with apraxia. He's currently 5, turns 6 in January and we discontinued PROMPT when he was 4. Really, he received it for about a year, from age 2-3 and then we consulted a couple times until age 4 to ensure everything was developing properly. You mentioned as a baby not making "normal" connections - this is speech for him. He would make these grunty sounds in the back of his throat, with inflection, and made no words. His inflection was so good people would respond to him as if he had spoken words, but he made no attempt at words, as if communication was the goal, but words were not relavent. Infants and toddlers tried to say he was selectively mute. Then I found the PROMPT therapist. She had me connect the open breath sound "hhh" onto his hand with the word help, and had us repeat that every time he asked for something, so he could literally "feel" the word as the breath came out of his mouth onto his hand, and it was as if language clicked in his head and every week we went he picked up a dozen words until by 6 months in, he was "at level". After a year she told us there was nothing more she could do with him.

4 hours ago, PeterPan said:

When you see how it SHOULD be, then you get really angry and can go ok, my dc really has some gaps there. But we accept our kids right where they are and we're used to them and we're not seeing that gap. So sometimes you have to reconnect with where other kids are so YOU can see the skill gaps (joint attention, language, etc.) so you can get angry and force intervention.

Yes, this. And, this connects back to the rant about high functioning because I cannot tell you how many people over the past year have tried to be helpful by detailing their child's fit over something to help me realize that all kids throw fits. I'm like, yes, I realize throwing fits, slamming doors, kicking, throwing toys, can all be normal behaviors for kids, but really, your kid is 3 and mine is 5 and secondly, your kid isn't the one curled into the fetal position in the corner of the classroom refusing to speak or move. (Thank goodness we've moved past that stage - that was when I contemplated never trying to put him in any class ever again)

[PeterPan]

TNL and SPELT. We needed detailed language testing that didn't use multiple choice to bust through and show the deficits.

[kbutton]

11 hours ago, PeterPan said:

My ds was very similar, with just this really different way he was as a baby that was hard to pinpoint. He had this social justice thing where he was ANGRY if you didn't do what he wanted. It wasn't like just upset like a baby should be but angry. And think about it, if he's not making all the connections a baby should make (picking up patterns, learning cause effect, figuring out how the world works), then yeah it would all seem random and unjust and unfair.

My ds utterly failed the TNL and SPELT this spring and his verbal IQ dropped 30 points between administrations (as his peers pulled ahead and his language disability became more obvious) and they STILL didn't run a non-verbal IQ.

The point of that ramble was if they don't run the tests for things like narrative language, then you don't realize they're going on. So then with interoception issues plus narrative language issues, you can end up with a kid who's super bright but having these behaviors and you're like WHY and that will be why. And you won't realize it's discrepant unless you go hang with other kids of his IQ of his age and go OH MY. 

The baby/toddler rage is SO REAL. It was terrible, demoralizing, and I learned that you couldn't talk about it to very many people because it made them think, "Mom is psycho." I had ONE friend during those years whose kid was like this, and when I heard her use the same language to describe it, you could've picked my jaw off the floor. We are no longer in touch, but I think her daughter and DH are both on the spectrum. It was her second child, she was an older, confident mom, and she didn't mince words talking about how angry her kiddo would get.

We had the invisible language deficit with strong verbal IQ scores as well! My son's verbal IQ went up, and so did his non-verbal IQ (that one went up astonishingly--previously it was lower than the verbal IQ but still very strong). I've read that's very unusual (2e kids usually have lower scores as they age), and the psych remarked on that as well. But he still bombed the TNL. (Peter Pan, I wonder if they didn't do a non-verbal IQ because previous testing showed a pretty good verbal IQ? Getting a non-verbal test later might be a good idea.) Language testing that is not multiple choice, as PP said, is a MUST.

I would note that you have to hang with kids with similar IQs who are not also somewhat able to pass as NT but aren't--I think part of what delayed my son's diagnosis is that we knew two girls and at least three boys who had quite high IQs and are also likely on the spectrum who were in our orbit. It made my son seem fairly typical. The girls passed better than the boys. We are no longer in the same circles as any of them, but only two of those kids that we know of had people suspect they had ASD traits. One has an informal diagnosis (parents keep it in mind). One dismissed it early on because the doctor made a really big deal about one tiny aspect that was really blown out of proportion, and that soured them. A third did get some kind of therapy later (Brain Balance), but I have no idea if he has a diagnosis. I have seen enough and read enough since then that unless they've changed dramatically, I truly think they are all on the spectrum. 

10 hours ago, Lecka said:

There is some kind of toddler autism screening my son also passed.  He doesn’t flap his hands, he doesn’t toe-walk.

It’s not a very good screening.  

M-CHAT? Good substitute for toilet paper, IMO.

7 hours ago, mamashark said:

He would make these grunty sounds in the back of his throat, with inflection, and made no words. His inflection was so good people would respond to him as if he had spoken words

Lol, my son did this kind of thing too (especially from age 1-2), but he did actually use speech as well. It was always exquisitely clear to everyone exactly what he wanted when he made these sounds. It was not clear to the neighbor's dog though, which made my son really annoyed, lol! 

I hope hearing us all talk about this stuff is helping to make it feel like your new normal is normal to someone else too. ? 

Edited October 12, 2018 by kbutton

[mamashark]

1 hour ago, kbutton said:

I hope hearing us all talk about this stuff is helping to make it feel like your new normal is normal to someone else too. ? 

YES! I've spent all afternoon and evening reading through previous threads of information and then we had this issue tonight at bedtime where something happened and my son couldn't verbalize why he was so upset about it and I felt like all these lightbulbs were going off in my head. Things were clicking that I've been seeing and the information you guys have already hashed out are helping me see a clear path to start walking. All of a sudden I'm not feeling overwhelmed so much anymore and it's like there is this clear door to walk through for the next thing I can work on with him at home. Sure, we'll keep pursuing each piece of the team that we need to get in place, but in the meantime I feel like I can breathe again because I have tools to work with too.

[kbutton]

12 hours ago, mamashark said:

I feel like I can breathe again because I have tools to work with too.

Make sure you give yourself credit for every one of the things you are doing that you didn't realize was a tool or strategy. It adds up!