Sustained Attention, Ritalin and my son

[sbgrace]

My son has several dx (ASD, ADHD combined, OCD).

He started short acting Ritalin a month ago.

When we got to a good dose it made a startling difference in the hyperactivity and impulsiveness. He clearly benefits. I wish we could do more than short acting, but with his other issues this seems like a wise start for now. He had some major issues with two other ADHD meds, so I'm thankful something is helping without negative effects.

 

He has signtificant problems directing his attention to the proper thing. We're doing math. He attends for 10 seconds and then his mind is only half with me at best. I can tell when he's clicked in and clicked out mentally. It's constant redirection for anything that actually requires true mental focus.

 

This is not worse with Ritalin, but I don't think it's better either. I believe he can focus better actually, but putting that focus fully on the task at hand is another issue. 

 

I'm guessing this is the ASD. If the Ritalin drops the hyperactivity, it's probably doing what it can for the attention too, yes?

 

Are there any effective cognitive or behavioral interventions I could use to try to teach him to direct and sustain focus?

[geodob]

The ability to control and inhibit Impulses, is the first stage of development and takes around 6 years.

Once these come under control?

Then without these distractions, one can then start to develop control of attention.

 

But an important thing about attention? 

Is that it isn't a 'single thing'?

Rather, at any moment, we are maintaining multiple points of attention.

So that we can attend to multiple things at once.

But given these multiple points of attention?

What needs to be developed?

Is the ability to manage them.

Which involves using a 'hierarchy of importance'.

So that we maintain 'things' at different levels of attention.

 

For example, time is something that generally occupies one area of attention.

But we need to be able to move it up or down, to suit the situation.

As we go from having plenty of time to do something, to getting close to completing it on time.

 

So that now his hyperactivity and impulsiveness have significantly reduced?

Without this distraction, he can now start to practice managing his hierarchy of attentions.

[Lecka]

Okay, my son who has autism is not thought to have ADHD.

 

I see the switched-on and switched-off thing, but it may not be the same thing. 

 

With him -- motivation is what helps him.  I don't really have to re-direct him *to the task.*  I just have to remind him *why are you doing the task.* 

 

This looks like -- he is staring around lacksadaisacally and looking switched-off.  But if I say "don't you want to see Emma?" (our dog) then his switched-on looks like:  really being able to move forward and do many things to reach his goal of seeing Emma.

 

So -- b/c he is like this, the behavioral interventions that work this way work AWESOME with him.

 

I have also seen him do programs where he is asked to "recall" (aka remember) something after a very short time, then slightly longer, then slightly longer.  He started out very low with this, but when he wants his reinforcer, he will make his best effort.  This is still a weaker area, but it has improved. 

 

But -- this kind of thing just fits him.  It is like it is fitting with how the autism works with him.  

 

Other things that tie in with being motivating for him can be:  seeing an amount that looks doable to him, and knowing  that is the total amount, so he can have the motviation of thinking "I do this amount and then I am DONE."  Also, telling him he will "show Dad" or "show big brother" are things that can motivate him. 

 

But anyway -- a lot of little and big motivational-type behavior intervention strategies go a long way for him.

 

But, I look at him and I *see* that, yes, some things are hard for him, and then it is a more diffiult task, and so when the task is more difficult, that makes it harder to focus for very long.  We see that with him.  I think that is how kids will be, though, if they are working at a level of higher difficulty.  They can work harder at a level of moderate difficulty, in general. 

 

But anyway -- I do see these strategies work, and that he does do his version of clicking in.

 

But I think that is kind-of because of motivation in the first place, and not because of focus in the first place. 

 

People who have worked with him, and who have also worked with kids who have autism and ADHD, tell me they do not see him struggle with focus like the kids who also have ADHD. 

 

So I do go by the "increase reinforcement, decrease demands" kinds of rules of thumb, b/c that just FITS him.  He needs high reinforcement of whatever kind, he needs to develop natural reinforcement and reinforcement like "I did a good job" and "I am all done."  That is a given.  Then he also needs demands to be not-too-great.  That is a given.  With him -- if I go to this rule of thumb, then I am going to get an answer.  But, one my answers might be "the demand is too great" which might mean to make a goal be a lower goal instead, or else to break that goal into smaller pieces.  But, I really don't know if this would help with math.  This is just my go-to for the switching-off, right now.   

[PeterPan]

Lecka's right on with looking at things like the difficulty, motivation, methodology, etc.  Have you looked at environmental control?  With my ds, I have to be so careful what I let into the space.  He's a gymnast, so he's literally GONE, poof, over the barriers, bolting, under things.  The more stuff I eliminate, the better.  He has his obsession objects, and we have our rule about our teacher table space being free of those.  Like we make a ritual of leaving them in another spot and coming back to our spot.  And barriers around (walls, furniture, cabinets, whatever you've got) to create environmental control so his brain gets the idea that when he's there he's there.

 

Is the dose on the meds cranked up as high as they're going?  Is it possible this will improve as the dose goes up?  Is it possible it needs another direction, like more sensory or OT?  We've been doing lots of OT on my ds this year, and when the things aren't in place he's really quite impossible to work with.  

 

Just throwing out thoughts there.

[sbgrace]

Thank you all for your thoughts.

 

Yes, I do see a difference in terms of motivation. Though he does seem to have problems staying focused even when motivated. Or getting focused initially. Or his thoughts/imagination are very motivating, so it's hard to compete.

 

He sometimes says that he can't stop thinking about x (his interests at the time) to focus on whatever. But, in thinking about it, I think this happens in the things that he knows are going to require a lot of mental effort-like math.

 

This has gotten much worse (couldn't "shut off his mind" to sleep or focus on anything) with some ADHD meds in the past. It's not worse with the Ritalin at the current  dose. If we push up the dose, I don't know if it would become an issue or not.

 

I do think there are sensory issues. There are also some regulation issues. Sometimes, even often, he gets in modes where he is just plain wild. I don't know what that is. I don't know how much control he really has at those times.

 

I worry about him. I feel at a loss.

 

I will think on the things mentioned here. Thank you!

 

[PeterPan]

SBGrace, if he were in school, they would be (if they have an OT and funding) be offering your ds Zones of Regulation, the 5 Point system, Alert, etc.  These are things you can buy and implement yourself.  You go to socialthinking.com buy the books, or you can even pay and attend a workshop or three!  I went to the Zones of Reg first level workshop last month and it was WELL worth the money.  Totally got me over the hump of how in the world do I implement this...  I now get what I'm seeing and how to have a plan.  I'm not working on it yet, because frankly we already have a lot going.  We tried Zones many months ago, and I realized I had holes in how I was understanding it.

 

Anyways, you sound like you need some of those materials.  You would work through the materials, set up to do check-ins several times a day, practice using his strategies/tools several times a day.  Then you're *both* gaining better sense of "wild" (yellow zone, maybe even red zone) and why he's getting there and what he can do about it.

 

Our SLP just got a terrific book on EF.  It's called The Source for Executive Functions, and it goes through a bunch of areas like transitions, self-regulation, attention, etc. etc. and how they relate to EF.  I found it very helpful.  It was one of those where you read the book and are just horrified because your dc does ALL those things, kwim?  But on the other hand, to actually see them and say ok, that's the right clinical word for that behavior, now I can do something intentional about it, now that I know what it's called...  

 

There's also a book Unstuck and On Target.  Less theory, more just right into practical lessons.  

 

Alert is doing online training in Nov.  It's a little bit pricy ($450), but these workshops always are.  Lecka probably knows more about Alert.  It just showed up in my FB feed, so I was looking at it.  Getting some kind of training, where you get to hear things thoroughly explained, where the cracks and glue you miss by just reading the book, can be so helpful.  You hear their tone of voice, see their videos, catch their *attitude* on how to handle things. 

[Lecka]

Okay, I went to a presentation on this over the summer.  http://www.isec2005.org.uk/isec/abstracts/papers_m/myles_b.shtml  Imo the word "rage" is really over-the-top, I do not pay attention to that.

 

But I hear this from this, from sensory areas, etc...... when, for whatever reason (emotional reasons, sensory reasons, frustration, -- whatever reason) a child gets into the "wild" stage (if it is the wild where they are just not very responsive) then they are NOT in a state where they are able to learn.  Then they have a coming-back-down stage that can last a LONG time (like the rest of the day, into the next day) and during t hat time, they are going to be able to go back into their "wild" stage very easily.  

 

So ---- you are supposed to look desperately for signs that come before they go into that phase, and try very hard to intervene at that stage, so that they don't even go INTO the wild phase.  

 

So nobody is saying it is easy or that it is possibly to be at 100%, but this is the goal ---- to try to recognize the set-up conditions and intervene then.  

 

Which -- there are just a huge number of ways to intervene before.  B/c as I have heard said, once they are at that stage, you have already "lost them" and you can't really "get them back" at that point ----- you kind-of just have to wait at that point.  Then afterward ----- b/c they will be more fragile, you have to go easy on them on some level.  So the best thing is try to look for patterns and intervene early, set up the environment for success, etc, etc, etc,

 

So it sounds like ---- he may not have much control at those times.  If you were in a school -- you *might* be re-directing him to a "safe space."  Or, you might be evacuating the rest of the class to finish the lesson in the library or computer lab (which is NOT a big deal) b/c you will be getting into an escalating, maybe physical alteration if you try to move the child.  But ideally it would never get to that point with the child in the classroom, you know?  They would show signs and the signs would be noticed, so that they wouldn't get to that point.  That is the goal.

 

If you wanted to try a "home base" there is a lot of information at Autism Internet Modules.  It is free.  It has got some ideas.  

 

But, they are two separate goals.  One goal:  prevent kids going into shut-downs, melt-downs, or whatever, where they are not in "ready to learn."  

 

That is not the same goal as increasing focus on math.  But with this, they will say ----- being in, and staying in, "ready to learn" HAS to be the number one priority, b/c of the long recovery time with a whatever.  All of that time is time that is not spent in "ready to learn."  So they will make that the top goal.  

 

You also might try break cards with him.  Break cards have been good for my son, and I read in a book that they are a "Top Ten Strategy" for this kind of t hing.  There is a method to it, you do not get to do a 'preferred activity" during the break.  You can have a break of just resting, or you can have a break of doing a non-preferred activity (so, an activity, but not like -- playing a video game if that is a preferred activity). (Save the preferred activity for completion of a task or goal;;;; this is where it is good to set mini-goals so the child can have success...  as small as the goal needs to be for the child to have success... then you try to slowly increase the amount or level of the mini-goal.)   

 

We have an ABA-style of break cards specific for my son's age and level, but here a top google link in general:  http://www.pbisworld.com/tier-3/breaks/   It is *definitely* an autism strategy (that is where I read it was a Top Ten Strategy) but this link is mentioning it for ADHD and focus.  

 

I really did not have a good impression of break cards, honestly I thought they were dumb and stupid.  Really dumb and stupid.  I was shocked to read they were a Top Ten Strategy (and the other 9 on the list ---- I totally agreed with).  So I am always like ---- "break cards:  they are actually good."   

 

 

Also, I will mention the "spoons" analogy.  This is where a lot of little things add up to a meltdown, and there is not one BIG thing, but instead a lot of little things.  For this -- it can *seem* like there is not anything, but if you just start doing a lot of little things that are recommended as "this might help" then it can add up to a better situation.  So that can be the sum total of a lot of areas, and maybe they all need to be pretty "on" b/c they are all kind-of frustrating and the frustrations build up.  That is something to look at when it seems like there is not any one thing.  

 

[Innisfree]

Lecka, the "spoons" analogy bit describes what happens here a lot perfectly. It's usually not one big thing causing stress, it's a lot of little things that add up.

[Innisfree]

Regarding Ritalin: we tried it, and I think it did help, but I didn't continue giving it to dd because I was just too uneasy about the overall number of medications she's taking. That one seemed helpful but less essential than the others. I might change my mind about the cost/benefit analysis there at some point.

 

I need to really study those top ten strategies.

 

The problem we run into is one of timing, which Lecka describes very clearly, and compliance. It's so hard to keep dd's cooperation. Ultimately she is willing to go to much greater extremes of behavior to gain what she wants than I am to gain what I want.

 

So, if she's in the yellow zone, and I suggest an activity to refocus or calm down, she is likely to refuse that and either shut down or defiantly go for a more preferred activity (in Lecka's example, the video game). So maybe I was wrong and she was really already in the red zone, even though she was just sitting quietly at the table? Or sometimes the mention of zones seems to get her upset.

 

I think I need to do more conscious monitoring of zones all day long, and make sure I don't just associate them with bad behavior and turn them into a trigger.

 

All this needs to be very conscious and purposeful and carefully implemented, and I've got enough ADHD tendencies myself that I find it really hard. I appreciate the chance to "listen in" as others are thinking it through.

[Lecka]

There is a book called Stop That Seemingly Senseless Behavior by Beth Glasberg.  It has a Chapter 11 that is Top Ten Strategies for Challenging Behavior.

 

It is really a book about behavior plans and challenging behavior.  But, it mentions Break Cards as a Top Ten Strategy for Challenging Behavior.  It got my attention!

 

It is part of a set of two books, and they are good books about behavior plans.  My son used to have a behavior plan, though he has been "off" of it for a year now. 

 

It is the kind of book that is a little more, in some ways, for kids who have language/communication issues.  It is definitely more on the "one cause/one effect" side. 

 

It is not a "spoons" or "total demands" or "cumulative stressors" (which are kind-of synonyms used by different people) kind of book, so much.  Break Cards would still be a good strategy -- but it is not focusing on the "little things of all kinds in the environment as much as it is focusing on one thing, and trying to solve one problem, and trying to prevent one cause-and-effect challenging behavior, that is a specific behavior. 

 

It is a good book, but it is maybe not the "here is the best top ten" book.  It is a great top ten for "specific cause and effect challenging behaviors." 

 

Innisfree -- it sounds like there is something of an escape/avoidance behavior there.  I do not know why it would be exactly, but it sounds like it could be that way.  *If* it is, then it may be a built-up pattern of behavior that fits into a box:  "escape/avoidance behavior."  There are  ways to try to change the cycle of behavior.  But, then there are questions of "why did this pattern start in the first place?  what is going on?  is there an underlying or root cause?"  That kind of thing can be part of "functional behavior assessments" and "functional behavior analysis."  They are helpful for me for my son.  They were really helpful when he was younger.  They are recommended for autism.  They are just one tool, and the thought process is not 100% aligned with other thought processes, but it is a useful tool I think.  But the "blowing me off, going for the video game" ---- that sounds like it can be the kind of thing that is fba-ish or where there is some insight into it.  B/c, there is a kind of shutting off where, it is not the same kind of shutting off.  My son does a kind where he can come back from it.  It is not the same as the kind where kids can't come back from it.  B/c there is a shutting off that is more of a "non-responding" that my son does, that is not the same as shutting down (like in the article about shut-downs).  I have seen my cousin shut down.  My son is not shutting down like that, he is non-responding.  He has shut down, but he is more likely to be non-responding.  If your daughter IS doing the shut-down thing, then it is not the same kind of thing.  But if she may be more non-responding, b/c she has *learned* that if she non-responds you will *leave her alone* and/or *take away the demand* then that is a different thing than if she is shutting down b/c she is going into that state of being shut down.  For my son -- if I take away the demand, and then he is happy as a clam again, then he was NOT in a shut down state.  You know what I mean?  If everything is fine and he is still upset for a very long time, then he was not just "trying to get me to leave him alone or take away a demand."

 

My son had a lot of escape/avoidance behaviors.  It is very lessened now, but it used to be a lot.  What you said sounds familiar to me.  But it is hard to tell.  But the fba (functional behavior assessment or analysis) stuff helped.  You write down an ABC (antecedent, behavior, consequence).  You see if the ABC seems to show attention-seeking, access, or escape/avoidance.  Then you try to look at why there is this pattern and how to change it, by changing antecedents (things that happen before the behavior).  Changing the consequence by itself will not be expected to work.  But, you may have to change the consequence, too.  There is a different way to change the consequence, depending on the "function" of the behavior, not the behavior itself.

 

That means:  the behavior is biting.  You do not respond the same way to all incidences of biting.  If it is attention-seeking biting (while you are busy with another child, while you are on the phone) then you respond with that consequence (and think "how do I keep this from happening next time").  If it is escape/avoidance (you want them to put on shoes to go outside, you get bitten, you throw up your hands and go "fine! fine! we will just stay in!  you can play in your room!") you respond with that kind of consequence (and think about preventing this from happening next time).  If it is access, it is the same.  Access would be ---- he bites his sister and she says "fine, you can be on the computer." Or,  you go "wow, we've got to get you calmed down, here is the iPad.") 

 

But it is only a good tool if it is *actually the case* that there is an engrained pattern of attention-seeking, escape/avoidance, or access.  If that is not what is going on, it is not so good.  It can be good for ideas.  But for it to be like "yes, this is awesome" you have to have one of those three things going on.  (Imo.)  So I do not think it is the best answer for a child who is having trouble focusing on math.  Even if you looked at it as "escape" then that routes you back to:  try to figure out how to help him succeed, look at small changes to make, think about mini-goals, think about increasing reinforcement, think about changing the environment, think about changing the daily schedule and doing it right after a sensory activity, etc. etc. etc. 

 

[PeterPan]

Innisfree, you can use a visual schedule to help you plan in break cards and your Zones check-ins and Zones tool practice.  Kuypers (author of Zones) envisions kids checking in multiple times a day and practicing their tools several times a day.  She had terms for it, but that guided check-in and guided self-monitoring is supposed to be phased over to the student.  As you say, it's not so effective if you look at someone in red zone and say Suzy, you are in Red Zone, go to your sensory break tent!  LOL  Not gonna work out well.  But if you're at their arm and they're checking in, or maybe you see they're moving to a different zone and you go hey, let's go check in...  Then you're guiding and they're getting themselves there.

 

Kuypers didn't want a big fuss over picking the wrong zone.  Like you could quietly guide them back and say hmm, I see you're doing (this body language), maybe you're in a different zone?  More guiding, less telling, if that makes sense.  Then if you can do video work or drawing what they look like in that zone, then they might figure out oh, when I'm in this zone, I always do X.  So then you can say hmm, I see you're doing X, do you know what zone you're in...

[PeterPan]

Lecka, that book sounds good, and our library has it!  :)

[Lecka]

I am going to add, for my son, if we were going to do Zones (he is young, it is on the list) then we would Very Likely start it with "you looked at your Zone card, have some tokens" and then if we practiced him using the card to choose an activity, then he would get tokens for that, too.  He would get tokens for every step in the process.  Or if not tokens, then some kind of "hey, these Zones things are Awesome!  There is no need for me to hate them and throw them on the floor!" 

 

B/c he can be that kind of learner in general, that can need to be part of the teaching process for him for anything that he does not immediately take to. 

 

I think if you are at a point where *you* are implementing the program, and not *teaching her,* then, b/c this is more where we are, you can step back to "first, then" where you just do some "first, then" and you want her to do it, and you use your observations to introduce the language you are using and stuff. 

 

That is the sensory program my son is in at school, it is for kids who are still introductory in learning the language and developing the self-awareness and also the desire may be lower (b/c maybe they are less self-aware and so they do not have a high level of internal motivation that comes from wanting to be "doing what they are supposed to do" on some level). 

 

I can't think of the name of it, but it has you use first, then cards, and give choices to the child of activities out of their list, but it is on the whole a lower-level of expectation of the child's independance and ability to do the program, in its way, I think.  But I think it is a great introduction. 

[Lecka]

I just thought of this, but another thing that might make Zones more motivating ---- if there is an older sibling, older cousin, or anybody like that, that might do Zones, that can be great for a child who will want to copy the older sibling or cousin.

 

We have gotten my son to do a lot of things b/c of his big brother doing them.

 

My older son will get something like extra tv or to pick supper (when he always wants tacos and I am tired of them).  I have given him $5 before when he was trying to save up for something.  

 

It doesn't always work, but it can really increase the cool factor.  

 

I have never gotten much  mileage out of having a child want to model something for a younger child, but if there is a younger child who would look up to your daughter and learn some Zones strategies from her, I have read that can work, too.  But we have never done anything with that.  My daughter will do things to be a good role model for littler kids at church, and that is good, but it has never been anything major.

 

But my younger son wants to do things my older son does a lot of the time, so that can work out great for us sometimes.  

[sbgrace]

I actually own Zones and Unstuck and On Target. I own a lot of books actually! I went from Zones to Mindfulness because we couldn't seem to find a way to regulate using the Zones. But I didn't practice multiple times a day diligently. I will try with Zones again incorporating what you've shared from the seminar OhElizabeth. I probably quit too soon. And yes, he does have issues in pretty much all the EF stuff. Smart but Scattered was eye opening and depressing at the same time! It's overwhelming and hard to know where to start.

 

Lecka, I'm going to look at the links. Thank you. I could tell this morning that he was just off from the start. He said he was green zone, but I wondered if it was a bit yellow. By a 1/2 hour and before he even started breakfast in he was red. And what you shared is important for me. I couldn't get him to regulate all day. It was so discouraging (alternate silly, out of control silly, angry, out of control angry, rinse/repeat all day). Horrible day. He's outside with his dad right now hopefully running off excess energy so he'll be able to sleep. I need to figure out something to help him.

 

I get 3 hours of calm and better focus (though still with click in/out) when he has the Ritalin. I usually prioritize trying to get as much school as we can in those hours.

 

Do you guys think I should prioritize working on special needs stuff like emotional regulation and executive function when I've got him for those 3 hours?

[Crimson Wife]

With a 5th grader, you've probably got some puberty-related motivational issues over and above the ADHD and other LD's. The meds sound to me like they're doing what they can in terms of reducing distraction but they're not going to make a reluctant 10 or 11 y.o. want to do math. I wish it were that simple!

[PeterPan]

SBGrace, do you have the option to bring in a behaviorist, OT, or SLP as part of your team and let *them* do the instruction for Zones?  Then it would be an outside person, more clout.

 

Yes, that was the biggest thing I learned in the workshop (aside from the idea that I knew diddley about EF), that they want you to spend SIGNIFICANT time and effort working on the Zones when they're CALM.  This is a program that is 80% when they're calm and then 20% pull it out when you need it.  And that's why I'm saying consider getting someone else to do it, because the kid might hold it together for them and calm down.  So then he's automatically more in ready to learn. The therapist would also bring more experience to the table.

 

Honestly, if you aren't recognizing his Zones *yourself* then you haven't done enough instruction with him.  It's not like you just learn the labels.  Kuypers showed us in the session that you could do the lessons out of order. The book is nasty sequential, I know, and so what you don't see there is you could go do lessons 5-9, then cycle back for 1-4.  You could do some lessons, pause, bring in some stuff from socialthinking.com, then go forward again.

 

I wouldn't try to apply ANYTHING with the zones until you've worked through more of the lessons together.  Like instead of trying to use it to solve problems, just focus on the learning part.  Learn, learn, learn TOGETHER, and then at some point in a month or two or three maybe you'll both go OH that's what zone I'm in and I know what to do!  She also talked about the idea that the teacher, the parent, the guide can model zones by themselves talking about it.  YOU can say I'm really blue zone right now, what can I do to feel better?  And let the dc tell YOU what to do!  This does not have to be just about that heated moment and problem solving.  Milk it more during the day for you, for the learning (while they are in ready to learn), and I think the application in red zone will occur on its own more naturally.  We want the end product, but there's a lot of process to getting us there.

[PeterPan]

Zones becomes the instructional framework, and things like Unstuck, etc. *plug in* to that structure.  So basically you want to go back and do the lessons from Zones and really slow them down and focus on the process.  Do check-in's 2-3 times a day and do tool practice 1-2 times a day.  That's straight from Kuypers.  Then, when you hit a lesson in Zones where you're like oh THAT is a weakness, then you slow down and you pull in your other materials like Unstuck, etc. 

[Storygirl]

 

 

I get 3 hours of calm and better focus (though still with click in/out) when he has the Ritalin. I usually prioritize trying to get as much school as we can in those hours.

 

Do you guys think I should prioritize working on special needs stuff like emotional regulation and executive function when I've got him for those 3 hours?

 

Can he possibly take a second dose of the Ritalin in the afternoon? DS11 is on extended release now, because he is in school, but when he took the short acting, he had it twice a day. Actually, he still takes the short acting sometimes now as a supplementary dose after school.

 

As far as what to work on while the meds are in effect..... I don't know. While homeschooling, we focused on academics, but I think if we ever go back to homeschooling, I might alternate. Maybe get math done first thing, because that goes 1000% better with the meds, and then as a kind of break from academics do something that is more therapy. I didn't have that ability before, because I was teaching four kids and didn't have extensive time to devote just to DS's needs. But I think it would be ideal to just have the therapy things woven in among the academic, alternating activities.

 

By the way, meds dials down DS11's impulsivity in a major way, and it improves his attention. He still has problems attending, but is more able to focus.

[sbgrace]

Oh thank you all! This is so helpful.

Yes, CrimsonWife, we are at the beginning of puberty and it's definitely gummed things up, particularly the emotional regulation. We've went way backward in lots of ways in the past year. Discouraging.

 

Thank you OhElizabeth. That makes sense. I will restart zones and move slowly. He does voluntarily/spontaneously tell me what zone he is in sometimes, and is generally in agreement with what I would assess. So something stuck I think. But we just couldn't seem to find anything particularly calming. I think I was expecting too much and not practicing long or often enough. He just received approval to get autism services. I hope the quality will be good, but I don't know what to expect yet.

 

StoryGirl, I'm thinking of asking the doctor. I'm a bit nervous because anxiety has been an issue in the past with non-stimulant ADHD meds, but we haven't seen anything at all so far with the Ritalin. I think it's probably worth a try. He feels better (calm/settled) when he's taking it. I'll call. I do think I'm going to do some of this while he's medicated.

 

Lecka, OhElizabeth, anyone else: would it be a bad idea to pair the break cards with various zones practices (breathing or whatever)? I would do this initially just when we're practicing through the day, not during the times when he's dysregulated. Thoughts?

[PeterPan]

Hmm, they didn't address that in the workshop.  (There's an advanced one to follow up with more practical stuff!)  I think the most important thing is to get it done.  I wouldn't make *all* your breaks that, because that wouldn't be fun.  But if you have 4 breaks in the day and 2 are practicing your Zones Tools, that can be good.

 

The gig with check-ins is to build it into your day.  Like put it where he starts his morning and eats lunch, so it gets checked as part of the natural routine.  You could build tools practice into your routine as well.

 

If you're getting access to a behaviorist or something soon with your new diagnosis, then I would expect someone there would be able to help you, mercy.  And even an OT can be really good, because they bring fresh ideas to the table on what is calming and regulating.  He might need some overall regulation through OT, and then Zones is the cherry on top.  Zones isn't mean to replace OT for overall stuff.  It's a tool, but you may need some OT interventions too.  

[Lecka]

I hope you can get first-hand advice, too.  It really does help so much!!!!!!!!!!!!!!!!!

 

With my son, we would not introduce/change two things at the same time.  We just cannot.  If we want to do 3 new things, we pick an order, and usually do one new thing for two weeks (and get to a point where it is not NEW) before adding another new thing.  This is just what he needs.  But if we have one thing established (at least a little) then we can add a 2nd thing to it.  

 

We also are still kind-of working on break cards, in the sense that he may be prompted to ask for a break, instead of independently requesting a break.  It is not something where we can just go "here, these are break cards, you can ask for a break when you need one" and he goes "okay, thanks, I will do that from now on."  It is more like ----- nudge the break card over w hen he looks like he might want to take a break.  Or things like that.  He is not really at "indepently requests breaks."  

 

But it it still a good strategy!  

 

But I don't know the more advanced things with it, either.  

[Lecka]

Adding:  But there might be more motivation for break cards, b/c you use them to ask for a break.  Maybe that would be more motivating.  If something is more motivating then that goes a long way!

 

There are a lot of little things, but if my son does request a break, then he can get a reward "b/c you used your break card!" plus getting his break.  He can get a reward just for using the break card, and so -- for doing that bit of self-regulating instead of going to behaviors (b/c he is a child who does go to behaviors at times).  So it is some independent self-regulation, when he does use it, and it is a minor prompt (I think a positional prompt) if we nudge it towards him. 

 

Also, you are using verbal prompts, and verbal prompts do set some kids off.  If you could have "check Zone" on a schedule, and oh, you just come to it on the schedule, or things like that, for some kids that will not provoke a behavior. 

 

This is all on the more ABA side.... and we are not doing Zones.  But I want to in the future. 

 

The ABA side is appropriate for my son, though.  He was diagnosed in the severe range, and now he is in the mild-to-moderate range.  So -- we started with the strong background of ABA, and as he does better we can incorporate more things.  It is more flexible than that -- but that is kind-of our situation. 

 

Some day asking for a break will be a great skill he takes with him into programs like Zones, though, I guess. 

 

And sometimes he does really well with asking for breaks.  But it is not like it is a mastered skill, either. 

[PeterPan]

With my ds, it's he bolted so I say Oh, you wanted a BREAK and hand him the break card, LOL.  He's not requesting them either, lol.  But we are trying things like scheduling them in.  It's a work in progress.  

[sbgrace]

I hope you can get first-hand advice, too.  It really does help so much!!!!!!!!!!!!!!!!!

 

With my son, we would not introduce/change two things at the same time.  We just cannot.  If we want to do 3 new things, we pick an order, and usually do one new thing for two weeks (and get to a point where it is not NEW) before adding another new thing.  This is just what he needs.  But if we have one thing established (at least a little) then we can add a 2nd thing to it.  

 

We also are still kind-of working on break cards, in the sense that he may be prompted to ask for a break, instead of independently requesting a break.  It is not something where we can just go "here, these are break cards, you can ask for a break when you need one" and he goes "okay, thanks, I will do that from now on."  It is more like ----- nudge the break card over w hen he looks like he might want to take a break.  Or things like that.  He is not really at "indepently requests breaks."  

 

But it it still a good strategy!  

 

But I don't know the more advanced things with it, either.  

 

I do think I need to focus on one thing at a time with him. Right now, I've decided to hone in on Zones work. Emotional regulation is probably foundational for working on other things, and I hope we can make progress. I also hope, if I do find ways that work for him to regulate, I can use those in break cards for example. I pulled out old chewy tubes, and that does seem to regulate him (though it's also distracting). I am going to investigate more sensory activities for regulation.

 

Adding:  But there might be more motivation for break cards, b/c you use them to ask for a break.  Maybe that would be more motivating.  If something is more motivating then that goes a long way!

 

There are a lot of little things, but if my son does request a break, then he can get a reward "b/c you used your break card!" plus getting his break.  He can get a reward just for using the break card, and so -- for doing that bit of self-regulating instead of going to behaviors (b/c he is a child who does go to behaviors at times).  So it is some independent self-regulation, when he does use it, and it is a minor prompt (I think a positional prompt) if we nudge it towards him. 

 

Also, you are using verbal prompts, and verbal prompts do set some kids off.  If you could have "check Zone" on a schedule, and oh, you just come to it on the schedule, or things like that, for some kids that will not provoke a behavior. 

 

This is all on the more ABA side.... and we are not doing Zones.  But I want to in the future. 

 

The ABA side is appropriate for my son, though.  He was diagnosed in the severe range, and now he is in the mild-to-moderate range.  So -- we started with the strong background of ABA, and as he does better we can incorporate more things.  It is more flexible than that -- but that is kind-of our situation. 

 

Some day asking for a break will be a great skill he takes with him into programs like Zones, though, I guess. 

 

And sometimes he does really well with asking for breaks.  But it is not like it is a mastered skill, either. 

 

Verbal prompts do set him off, at least when he's already dysregulated. If he's yellow, verbal prompts often push him more toward red. I'm glad you mentioned that. I need to think on how to reduce those and still work on zones.

[PeterPan]

That's why you practice the use of the tools when NOT in red zone, so that you can *guide* him to them with a non-verbal prompt.  For instance, you could have a cue, some kind of hand motion.  You could point to your check-in chart.  You can make colored books with pictures on each page of strategies/tools, so then you would just flip to that page.  Kuypers brought a bunch of these manipulatives to the workshop so we could see them, but I think the pictures are in the book.  They're just not all in color and inspiring like when you see them in person.   :D

 

Don't make your tool approach as nitpicky as chewies vs. hairy balls, kwim?  Like put a picture of the sensory treasure box, then put all those little things IN the box.  Then all he has to do is have the routine of looking at the flip chart and seeing sensory treasure box as one of the options on the red page, then he goes to your break tent/area that has the sensory box in it.  

 

See that's what was hard for me, was I didn't see how those things FIT TOGETHER.  So then when you practice your tools, you're not practicing specifically with a chewy tube, kwim?  You're actually practicing looking at the picture of the sensory treasure box, going there, using it for a few minutes.

 

In our box we have tons of things.  A body sock, textured balls, things to squish, stretchy exercise bands, weighted things.  Those magic wands that are filled with stuff are good.  The body sock is VERY calming to my ds.  I got ours on ebay.  So I don't have to train him which tool to use or have him whining about being bored.  It's just a matter of him going to his box (in his tent, which is dark and away from things) and slowing down and fiddling with things, rubbing things, turning things, then selecting something if he wants.  He could just sit there and fiddle things.  You can put in smelly stuff like chapstick or lavendar.

[PeterPan]

Hey, look at Zones pg. 142.  Should have a chart that says Tools for each of my Zones.  Do that.  Then do lesson 16 with the tracking chart. 

 

I'll see if I can find you pics of those flip books.  They were an easy activity and made a really nice tool.  I thought the pics were in the book, but they must have been in our handouts, oops.  

 

https://ccparentssharingpositiveideas.wikispaces.com/file/view/Zones+of+Regulation+Leah+Kuypers.pdf This is an older version of the workshop handout, but you can see some of the flip books and check in charts.  The pics are horrible, but think wordless books from kiddie church (a color for each page, label and laminate and spiral bind) and you'll be there.  Anything you want to make is fine. Paper, spiral, yarn, anything.

 

I'm a goober!  p. 101 in the book covers flip books.  It just doesn't have pictures really inspiring you with the VARIETY you could have with this.

 

http://www.mytherapycompany.com/wp-content/uploads/2014/05/full-version_May-7_MDUSD-ZoR.pdf This link shows check-in jars using popsicle sticks.

 

https://www.pinterest.com/lmkuypers/the-zones-of-regulation/ This pinterest board is by Kuypers herself, and she shows some.  There you see the could be small (half page or even 1/4 page), go on your desk, be full page...  It's really just whatever size and amount of language or visual fits your kid.

 

There's also a FB group for people implementing Zones.  I think target audience is OTs, etc.

[sbgrace]

I didn't see your posts until just now, and it's 12:30 here/I'm fading. I will read this again tomorrow. But I think I'm going to have a few questions for you if ok. I thought I was practicing individual skills (say breathing with the lazy 8)?

 

Oh ugh. I feel so incompetent to help him. Sometimes I don't think I even know what I'm dealing with.

 

He went hyper/out of control in front of the entire church this morning. I can't believe it.  I'm just so...so...I don't even know. Sad.

[PeterPan]

Sigh, I know.  And when they're out of control, it's so surreal.  People don't know how to help you, so they don't.

 

The Zones of Reg workshop helped me wrap my brain around it to see where everything was going.  The program is set up so sequentially, it's really hard for people who need the big picture.  The workshop would give you that.  Or, if you can't get to a workshop, can you hire someone to do Zones with him?  A behaviorist, OT, SLP, all kinds of people will be trained in this.

 

But yes, fire away questions.  I can parrot some of what I learned at the workshop, lol.  Like you, I had tried to do Zones with ds and knew I had holes in how we were using it.  

 

You know the other thing is, Zones is not a replacement for OT, ABA, that kind of thing.  Zones can be a framework to plug interventions into, yes, but it sort of has to be prioritized.  It might be he needs some overall help to get his body into "ready to learn" more often, so that Zones is just like keep him there.  I'm saying you might need to triage.

 

Not to add to your stress, but some behavioral logging might help a behaviorist help you find patterns.  I've been told to log, and I've spent months thinking you don't get it, there's TOO MUCH behavior stuff even to slow down and log!  LOL  Now we're improving just enough, and I'm trying to log things at the end of the day.  It's still hard to remember, but it's something.  There are forms, or you can just use paper and label ABC (antecedent, behavior, consequence).  Also make some notes on the page about overall stuff (how he slept, how he's eating, anything unusual or contributing overall).  

 

Are you able to hire some help for this?  It would jumpstart your process.  Do you want to talk about what happened at church and what led up to it?  The tools of Zones are small.  He may need some overall help (OT) to get him into a better place.  For my ds to do well in church, he needs food, consistent routine, a peaceful morning (not stressed), his proper stuff setting him up (kinesio tape, music, good nights sleep), NO STRESS, etc.  You mentioned in front.  When my FIL passed this summer, someone got the brilliant idea that all the grandkids should stand up at the funeral and testify, one by one, to memories of them with their grandfather.  My ds literally got sick and VOMITED over the stress!  He ended up not being able to do it at all.  Our kids need a lot of protection, in many ways, to set them up.  Sundays can be very stressful, with ouchy clothes, people rushing, missed food, changes in routines, social expectations.  I tell my dd the best thing about being an ADULT with issues (sensory, etc. etc.) is that you can set your terms.  When you're a kid, you don't get to set the terms and self-protect.  People yank you around and demand things and force you to wear things and get up and do things, and then they're frustrated at what happens.  Not that you're insensitive, but I'm just saying that, as an adult on the other side of this, I love that I can finally say NO and have it really mean something.  If someone jerks around with my emotions in a service, I leave.  If I'm supposed to wear something ouchy, I can go buy something else or refuse or decide to be less appropriate.  If smells are setting me off, I can leave.  Kids don't have that luxury AND they're too immature to put their problems into words.  We end up needing to be sleuths and advocates, all while dealing with the inconvenience of how they're disrupting our lives and schedules!  But if you think about it from his perspective, if he had been an adult feeling those things, what would he have done?  He might have refused to go.  He might have sat in the back.  He might have refused to shake hands.  He might have wanted permission to pace or go in and out. If it's noise adding to his load, he might want to wear earplugs or things to cut down on what is affecting him.   He might have wanted to do it on *his* terms.  

 

Well whatever, I'm on a tangent.  I'm sorry he's having meltdowns.  We've btdt.  I did them to my mother.  I was put in those positions where I couldn't succeed, where my sensory or this or that was going off, and I didn't have the luxury as a kid or teen to effect change.  I remember this BAD blow-up where my family was at a restaurant and there was smoking.  My family just thought I was bad, as I sat there repeating over and over, in a total meltdown, that there was smoke and I shouldn't be there.  They didn't just say wow, we'll take you to MacDonald's afterward, let me take you for a walk to get out of there.  There was no flex at all, because they had their plan.  I was inconvenient.  Now I don't live that way.  I'm upfront with my family and if it's a problem I leave.  As adults we're able to structure our lives to work for us, but our kids don't get that permission.  My dd was lamenting last night that EVERYTHING I keep in the house is soft!  I pretty much serve ground meat, things chopped up really fine, or soup.  She's like I WANT STEAK!!!  And I'm thinking steak? I can't chew steak!  LOL  But as an adult I can make my life work for me.  Now on that one, I didn't even realize I was doing it, lol.  

 

If you want to talk about the church thing, feel free.  :)

[PeterPan]

I'm rereading this.  Does your ped want to up the dose on the ritalin to see if it will reign in some of that inattention?  And has he had OT?  That's the elephant in the room here.

[nature girl]

I'm following along here...My DD has been much more compliant over the past 2-3 months, doing things she's asked more often, hitting or biting is extremely rare. But as that's improved, the meltdowns have increased and I'm at a loss. Sometimes it's because something is being denied (like yesterday she wanted to go out on the porch with my husband, but couldn't open the door because she had a plate and glass in her hands. She was kicking at the door to get him to open it, I asked her to set down her plate and open it herself, or to stay in and we could read a book, and WHAM she exploded for 10 minutes, smoke out of the ears.) More often though, she gets overly excited and becomes hysterical, laughing, rolling around, shrieking, not angry just out of control. It happened yesterday after we got home from the playground, just the excitement of being there with other kids set her off as soon as we walked in the door, and she was in that state for a half hour. Last weekend it happened at my IL's, she was so excited being around family that after two hours she exploded into that same hysterical uncontrolled loud silliness, even pulling her pants down repeatedlly. (And she did bite me when I tried to get her to use the bathroom before we left.) It lasts for 20-30 minutes and then she's exceptionally cool.

 

I'm at a loss for how to help her...I'm not going to do things like open a door for her just because she demands it, and when she gets over-excited I can see that she's descending into yellow, and we try to do heavy work and lazy 8 breathing, but by the time we get to that state the descent into red is inevitable and the heavy work only makes her more hysterical.

[MomatHWTK]

Personally, and I speak from personal experience, I would open a door before I'd let another meltdown get hardwired into my child's psyche.  There is a neurological reason for the behavior even if it seem illogical to us.  I have spent years undoing meltdown behavior patterns with one of my children, I now work very hard to keep them from becoming a habit with my other with similar patterns.

 

With my child, over-excitement and change in routine are big triggers and need to be carefully managed.  For us, it isn't about compliance, it is about recognizing our child's limits and working within them. Once the brain is fatigued or feels defeated or threatened, once the planned pattern is interrupted (i.e. a closed door), the amygdala kicks in and after that the child is only capable of fight or flight and definitely not executive function actions.  

 

A child with a brain that won't allow them to comply with the requests of those whom they want and need to please is in a very isolated place emotionally.  It is my job as their ally in this world to not leave them there alone.  We battle that brain together.   

 

OP:  We deal with ADHD, anxienty and ASD, so not quite the same.  I am still doing behavioral management for two undiagnosed kids and CBT along with non-stimulant medication + for another.  

[nature girl]

I see what you're saying. I wish I could find a pattern to this, that I could see it was related to less sleep/hunger/general agitation, but there aren't any obvious antecedents. 99% of the time she might fuss a little if we don't do what she asks, but within a minute she'll just do it herself. I didn't see any difference in the way she was acting yesterday beforehand, it was a nice, calm morning and this seemed to come out of the blue. I guess you're saying that on the rare occasions when she does explode, we should give in as soon as we see it to keep it from escalating. Where I'm conflicted is that I'm worried about her starting to think all she needs to do is explode to get what she wants, and I do want her to learn to regulate herself before she gets to that point, because people aren't always going to open doors when she demands it...But maybe I'm overthinking this.

 

As far as the overexcitement, this is probably the hardest thing. She was at the playground for an hour, playing very nicely. I hate the idea of limiting this sort of thing just because she might react. And with the holidays and travel coming up, I'm foreseeing day after day of this, I really do dread it. But we can't just stop our lives and stay isolated in fear of what might happen.

 

Personally, and I speak from personal experience, I would open a door before I'd let another meltdown get hardwired into my child's psyche.  There is a neurological reason for the behavior even if it seem illogical to us.  I have spent years undoing meltdown behavior patterns with one of my children, I now work very hard to keep them from becoming a habit with my other with similar patterns.

 

Are you saying you've seen that the meltdowns develop at some point and become a pattern the more they occur? This terrifies me.

 

[MomatHWTK]

 

 

As far as the overexcitement, this is probably the hardest thing. She was at the playground for an hour, playing very nicely. I hate the idea of limiting this sort of thing just because she might react. And with the holidays and travel coming up, I'm foreseeing day after day of this, I really do dread it. But we can't just stop our lives and stay isolated in fear of what might happen.

 

 

Gently, your life should be about raising your child.  If she were allergic to peanuts would you keep feeding her peanuts because you didn't want her to miss out?  If she had hay fever and asthma, would you still take her on a hayride?  

 

I don't live in fear of what will happen, I make choices.  I make a risk assessment given what I know about my child and then I decide whether I'm willing to take that risk or not.  I don't always make the right choice, but I'm getting better at making predictions and better at handling the consequences for the choices I make.  If I choose to do something that my trigger my child, then I need to be prepared to live with that choice and handle the meltdowns that may come.  

 

With regard to creating a pattern- the brain creates patterns constantly.  Commonly used brain pathways are reinforced, rarely used ones are pruned.  Negative thoughts beget negative thoughts, positive ones beget positive ones.  So yes, if over-excitement triggers a meltdown and that meltdown gives the brain an emotional release, then the brain is going to store meltdown away as a solution to the problem of over-excitement.  Smoking, eating comfort foods, seeking out familiar songs- all of use have learned what triggers a positive response and what triggers a negative and we seek out our places of relief.  

 

There are methods and treatments, but they don't happen  overnight, they aren't the same for every person and they require information to discern.  I have messed up a lot, but I keep trying and keep trying to learn.

[MomatHWTK]

sbgrace, re: the public meltdowns- As step one, teach your ds to seek a safe place and teach him  that it is OK to leave.  We humans are often caught up in doing what's right that we don't give ourselves the option to just turn and run if things become to much.  

For us:

Step one-leave and seek a quite place.  

Step two- try to learn not to yell and don't touch things (because touching turns into throwing)

Step three- communicate what is wrong and get our help (mom I need to leave...)

 

Here are some resources on managing meltdowns:

https://www.google.com/webhp?sourceid=chrome-instant&ion=1&espv=2&ie=UTF-8#q=ASD+meltdowns+how+to+deescalate

[PeterPan]

I'm following along here...My DD has been much more compliant over the past 2-3 months, doing things she's asked more often, hitting or biting is extremely rare. But as that's improved, the meltdowns have increased and I'm at a loss. Sometimes it's because something is being denied (like yesterday she wanted to go out on the porch with my husband, but couldn't open the door because she had a plate and glass in her hands. She was kicking at the door to get him to open it, I asked her to set down her plate and open it herself, or to stay in and we could read a book, and WHAM she exploded for 10 minutes, smoke out of the ears.) More often though, she gets overly excited and becomes hysterical, laughing, rolling around, shrieking, not angry just out of control. It happened yesterday after we got home from the playground, just the excitement of being there with other kids set her off as soon as we walked in the door, and she was in that state for a half hour. Last weekend it happened at my IL's, she was so excited being around family that after two hours she exploded into that same hysterical uncontrolled loud silliness, even pulling her pants down repeatedlly. (And she did bite me when I tried to get her to use the bathroom before we left.) It lasts for 20-30 minutes and then she's exceptionally cool.

 

I'm at a loss for how to help her...I'm not going to do things like open a door for her just because she demands it, and when she gets over-excited I can see that she's descending into yellow, and we try to do heavy work and lazy 8 breathing, but by the time we get to that state the descent into red is inevitable and the heavy work only makes her more hysterical.

Yeah, you sorta had one of those educational experiences for yourself there.  She probably can't sequence out the steps to problem solve this, but SHE is the bad one??  And you gave a little child an ultimatum (figure it out yourself or starve) when you could have just HELPED her?  

 

That's why you need evals.  You had neurologist evals but are waiting for a psych?  Or maybe reread your report a bit?  She's clearly having problems problem solving and figuring out the steps.  My ds used to do this.  Actually he still does, just in other ways.  He would sit at the counter and BANG.  He wanted breakfast, but instead of saying he wanted breakfast or getting up and getting his bowl, he just BANGED.  Infuriating and definitely meant he was a bad, lazy, reprobate, chauvinist, lazy man!  Not, lol.  He couldn't plan out the steps.  I actually had to take his hand and walk him to the drawer (which was down low where he could reach) and say what do you want first, what do you need next, what else do we need...  I still do that in other ways.  If he's never faced that scenario, he might need help for the steps.  If he has done it before, he might need some prompts.  

 

In your case, you could have said Wow, we have a big problem!  (using your Peg & Cat voice, of course)  What can we do about it?  Or you could ask What can I do to help you?  Or Do you need help?  Or just outright I could hold that for you while you open the door.  Or If you set that down, you'll be able to open the door.  I will hold it open for you while you pick up your plate.  

 

Issues with sequencing and problem solving are executive function.

[PeterPan]

Personally, and I speak from personal experience, I would open a door before I'd let another meltdown get hardwired into my child's psyche.  There is a neurological reason for the behavior even if it seem illogical to us.  I have spent years undoing meltdown behavior patterns with one of my children, I now work very hard to keep them from becoming a habit with my other with similar patterns.

 

With my child, over-excitement and change in routine are big triggers and need to be carefully managed.  For us, it isn't about compliance, it is about recognizing our child's limits and working within them. Once the brain is fatigued or feels defeated or threatened, once the planned pattern is interrupted (i.e. a closed door), the amygdala kicks in and after that the child is only capable of fight or flight and definitely not executive function actions.  

 

A child with a brain that won't allow them to comply with the requests of those whom they want and need to please is in a very isolated place emotionally.  It is my job as their ally in this world to not leave them there alone.  We battle that brain together.   

 

OP:  We deal with ADHD, anxienty and ASD, so not quite the same.  I am still doing behavioral management for two undiagnosed kids and CBT along with non-stimulant medication + for another.  

Totally agree.  And the hard thing for me is what to do when they're in that isolated, retreating, yellow zone place.  Like right now ds is there.  He can't handle anything.  He woke up with a repeated motion, has isolated himself, and when I tried to work with him (on something he'd normally enjoy, building shapes with knex) he bolted twice and hid, burrowing down into the couch.  When he's like that, I don't know how to help him.  He's just where he is today, and I don't know how to help that.  It's not like I did something wrong.  He just woke up that way, sigh.  For right now, we cut a first/then and he's listening to his kindle with a timer.  

 

It *feels* like, as a mom, you ought to be able to do something just so intriguing that he comes out.  Our Zones theory would tell us to help him make a choice that helps him get back to green.  I don't know that he can.  On days like this, often the whole day is a loss.  It's frustrating, because instead of doing what you think is homeschooling (teaching), it's more like behavioral control, what can I do to get him happy (seemingly), the whole inverse of where we typically want to be as homeschoolers.  As homeschoolers we're told to be efficient, be faster, be smarter, and get our kids as independent as possible as soon as possible.  This dc needing steps to do anything and lots of hand-holding just to stay stable blows that up.

[PeterPan]

I see what you're saying. I wish I could find a pattern to this, that I could see it was related to less sleep/hunger/general agitation, but there aren't any obvious antecedents. 99% of the time she might fuss a little if we don't do what she asks, but within a minute she'll just do it herself. I didn't see any difference in the way she was acting yesterday beforehand, it was a nice, calm morning and this seemed to come out of the blue. I guess you're saying that on the rare occasions when she does explode, we should give in as soon as we see it to keep it from escalating. Where I'm conflicted is that I'm worried about her starting to think all she needs to do is explode to get what she wants, and I do want her to learn to regulate herself before she gets to that point, because people aren't always going to open doors when she demands it...But maybe I'm overthinking this.

 

As far as the overexcitement, this is probably the hardest thing. She was at the playground for an hour, playing very nicely. I hate the idea of limiting this sort of thing just because she might react. And with the holidays and travel coming up, I'm foreseeing day after day of this, I really do dread it. But we can't just stop our lives and stay isolated in fear of what might happen.

 

 

Are you saying you've seen that the meltdowns develop at some point and become a pattern the more they occur? This terrifies me.

Yeah, that's the easy thing, to avoid xyz because you're avoiding meltdowns.  So then it SEEMS like she's doing well, and it's because she's never having to do non-preferred things, etc.  

 

You might have antecedents that are a bit more complex than the minute prior.  You might need to log things a while with an ABC approach (antecedent, behavior, consequence) and take it to a behaviorist to let them find the patterns.  

 

I wonder, as I read your accounts, if there's some language issue there?  Like is she SAYING she needs help?  Is she saying how you feel?  You have to use non-verbals or words or cue cards or something.  Sometimes people get in this rutt where they don't actually talk a lot.  She might have trouble self-advocating or saying what she's feeling.  You can't go wrong increasing communication.  Could be verbal, non-verbal, cue cards, a Zones check-in station, anything.  

[nature girl]

We had both a neurologist and neuropsych eval...The neuropsych said definitely ADHD, probably not ASD although she does show some rigidity and social issues (which could be just related to ADHD.)

 

Yeah, you sorta had one of those educational experiences for yourself there.  She probably can't sequence out the steps to problem solve this, but SHE is the bad one??  And you gave a little child an ultimatum (figure it out yourself or starve) when you could have just HELPED her?  

 

Well, that's a little harsh. There's a table right by the door, the door is the type that stays open, so normally she wouldn't have had any issue setting down her plate and doing it herself. I mean, she makes complex crafts with multiple components where she uses her mouth and underarms as extra hands if necessary, so she can put down a plate to open a door. It's just that yesterday she was in a state that I couldn't see at the time, where she was going to get violently angry at it not being done for her. (She even said, "You open the door for the cat all the time, you should open it for me!" I told her cats don't have opposable thumbs, you can imagine how that went over...) I do get that once she's in that state she can't think rationally enough to realize there are easier options (although once it was over we did a S, M, L problem rating scale and she admitted it was small.) But how do I know she's in that state?

 

 

In your case, you could have said Wow, we have a big problem!  (using your Peg & Cat voice, of course)  What can we do about it?  Or you could ask What can I do to help you?  Or Do you need help?  Or just outright I could hold that for you while you open the door.  Or If you set that down, you'll be able to open the door.  I will hold it open for you while you pick up your plate.  

 

Issues with sequencing and problem solving are executive function.

 

I do like this, I'll take that approach next time, kind of like a compromise. (I did suggest that she set the plate on the table to open the door, but even though it would've been an easy solution she was seeing that suggestion as a refusal to help. And even though the explosion hadn't even started at that point, I guess she was primed somehow to get there. The kicking at the door instead of asking probably should have been my warning.)

 

 

I wonder, as I read your accounts, if there's some language issue there?  Like is she SAYING she needs help?  Is she saying how you feel?  You have to use non-verbals or words or cue cards or something.  Sometimes people get in this rutt where they don't actually talk a lot.  She might have trouble self-advocating or saying what she's feeling.  You can't go wrong increasing communication.  Could be verbal, non-verbal, cue cards, a Zones check-in station, anything.  

 

I don't think so? She usually asks for help if she needs it, I haven't noticed any communication issues. Although maybe it's an inability to express how she's feeling? Other than saying when she's scared, she really doesn't talk about her feelings at all. It's one of the things I was hoping Zones could help her with.

[nature girl]

We probably do need to do more Zones check ins...It's just that when I ask what Zone she thinks she's in, she tends to act all crazy for a second just to prove she's not in Green. Sigh.

[PeterPan]

We had both a neurologist and neuropsych eval...The neuropsych said definitely ADHD, probably not ASD although she does show some rigidity and social issues (which could be just related to ADHD.)

 

 

Well, that's a little harsh. There's a table right by the door, the door is the type that stays open, so normally she wouldn't have had any issue setting down her plate and doing it herself. I mean, she makes complex crafts with multiple components where she uses her mouth and underarms as extra hands if necessary, so she can put down a plate to open a door. It's just that yesterday she was in a state that I couldn't see at the time, where she was going to get violently angry at it not being done for her. (She even said, "You open the door for the cat all the time, you should open it for me!" I told her cats don't have opposable thumbs, you can imagine how that went over...) I do get that once she's in that state she can't think rationally enough to realize there are easier options (although once it was over we did a S, M, L problem rating scale and she admitted it was small.) But how do I know she's in that state?

 

 

 

I do like this, I'll take that approach next time, kind of like a compromise. (I did suggest that she set the plate on the table to open the door, but even though it would've been an easy solution she was seeing that suggestion as a refusal to help. And even though the explosion hadn't even started at that point, I guess she was primed somehow to get there. The kicking at the door instead of asking probably should have been my warning.)

 

 

 

I don't think so? She usually asks for help if she needs it, I haven't noticed any communication issues. Although maybe it's an inability to express how she's feeling? Other than saying when she's scared, she really doesn't talk about her feelings at all. It's one of the things I was hoping Zones could help her with.

It's all executive function problems.  Whether the final diagnosis, when she's 16 and this is all obvious, is ADHD or ASD, the explanation is STILL executive function deficits.  See if you can find an affordable copy of this book  The Source for Development of Executive Functions  So it doesn't matter what zone she's is, she's going EF deficits.  She has them severe enough, in some of the categories covered in that book, that when any little thing piles up she's toast and can't use even the skills she has.  

 

Sounds like she has trouble waiting.  Maybe that's something that you target another time.  Maybe you get a token board from Christine Reeve's TPT store and incentivize asking, waiting, etc.  You could pick one or two target behaviors and every time she does them, bam, token.  And you give tokens enough that she gets a reward easily within a day.  

 

Yes, collaborative problem solving.  Have you read Greene's The Explosive Child yet?  Kuypers (author of Zones) says Greene was her INSPIRATION, her lightbulb moment where it all came together.

 

I think KICKING instead of ASKING is a communication problem.  She had a problem, and instead of using her words she kicked.  Hannaford says this is typical of certain profiles.  The Dominance Factor: How Knowing Your Dominant Eye, Ear, Brain, Hand & Foot Can Improve Your Learning  I'm just saying you can see that and put things to words for her.  You could put words to what she's feeling as you come up to her, but then switch to non-verbal for the options.  (pointing to the door handle then you to let her request with non-verbals)  Or you could stay entirely non-verbal and let her use gestures to request.  

 

My ds has gotten really demanding lately, but he does his in the car where we're driving.  Every Single Light, it's like why aren't you going, why aren't you turning...  It's very distracting to drive with, oy!  He'll start shouting Go, Go, Go, and the light is RED!   :scared:   

 

[nature girl]

Haha, DD is the opposite, I go through a light 0.002 seconds after it turns yellow and she yells, IT WAS YELLOW!!! WHY ARE YOU STILL DRIVING??!!

 

Sounds like she has trouble waiting.  Maybe that's something that you target another time.  Maybe you get a token board from Christine Reeve's TPT store and incentivize asking, waiting, etc.  You could pick one or two target behaviors and every time she does them, bam, token.  And you give tokens enough that she gets a reward easily within a day.  

 

That's a good idea, she does have trouble waiting. We tokenize everything else, so it would make sense to give her tokens for patience, starting at waiting a few seconds without getting upset and building up to a minute or two.

 

 

Yes, collaborative problem solving.  Have you read Greene's The Explosive Child yet?  Kuypers (author of Zones) says Greene was her INSPIRATION, her lightbulb moment where it all came together.

 

I think KICKING instead of ASKING is a communication problem.  She had a problem, and instead of using her words she kicked.  Hannaford says this is typical of certain profiles.  The Dominance Factor: How Knowing Your Dominant Eye, Ear, Brain, Hand & Foot Can Improve Your Learning  I'm just saying you can see that and put things to words for her.  You could put words to what she's feeling as you come up to her, but then switch to non-verbal for the options.  (pointing to the door handle then you to let her request with non-verbals)  Or you could stay entirely non-verbal and let her use gestures to request.  

 

Okay, you've convinced me it's time to put other things aside and read Greene. (I have an older version, hopefully it's as good as the newest.) The fact I haven't yet makes me realize that at the time I got it she really wasn't all that explosive, I was thinking of it more as a way of helping her deal with frustrations in schooling. The meltdowns have escalated so much recently.

 

Re: the kicking, she demanded first that the door be opened, and then a second later when DH asked her to open it herself she started kicking. In the future though, I think I'd interrupt the kicking by coming up to her, asking if I could take the plate so that she can open the door so that at least she'd feel like she had some control. Since she hadn't quite exploded at that point, she probably would have been able to calm down enough to hand me the plate

 

(sbgrace: I apologize for butting in on your thread. I hesitated, but then thought some of our issues were similar so was hoping the responses would be at least somewhat helpful to you as well.)

[Lecka]

I think there is balance and context.  I do want compliance on some levels and at some times.  I really do.  I need it and I think it benefits my kids b/c it allows them to participate and do things like -- just going places that they enjoy. 

 

But when do I care about compliance, and when do I care about a bigger picture and wanting things to go smoothly for my child?  It is just a lot of context. 

 

I care about both things. 

In the door situation -- I would attempt to request "ask me nicer" and then help.  That would be my attempt.  Does my attempt work?  Maybe, maybe not.  But if I think it is a reasonable attempt, I will ask for it.  If there is a pattern of not knowing how to ask in a nice way, I would practice that at other times.  I would also consider making my requirement of "what is asking nice" much lower. 

 

But I can see it going in a lot of directions.

 

I could see trying to prevent a meltdown in some cases.  I could see letting the child have the meltdown, calming down, and then starting over with "so what is going on?  let's try to figure it out."  Like -- maybe she wanted you to look at something, go outside with her, watch her, etc.  Those are all possibilities.

 

I do a mix and try to do whatever seems the most appropriate at the moment. 

 

But I think there are kids where you go way on one side of "let's not worry about compliance so much" b/c you KNOW they are doing  their best, that is their personality.  Or, every time something happens, you realize afterward "there was some extenuating factor," such that you wish you had handled it differently.

 

But then sometimes maybe kids are testing limits and need boundaries in order to feel secure and understand what limitations are in place for them. 

 

But I don't think it is always going to be one thing or the other for all kids.  I think there is a lot of personality involved, and skill levels, also. 

 

When you see two kids, and they want the same thing, and one of them can easily manage to ask and wait for it in ways that are very smooth and easy, and another kid doesn't have that ability ----- I think it has to be viewed as teaching a skill in a lot of ways, and kids are already frustrated, you can only frustrate them so much when they are doing their best. 

 

But I am not someone who feels like "I am against requiring compliance."  That is not my situation.  I have a daughter where I am in that direction with her, b/c she is conscientious and she does her best.  She wants to do things the right way.  If she comes across non-compliant there is a very, very high chance that she is ill or confused, and she will cry and cry if she is misunderstood. 

 

But that is not my situation with my younger son at all times. Sometimes that is his situation (he is not complying b/c he doesn't understand, he is doing his best, he is ill, etc) and sometimes he may be testing his limits or he may have to learn from experience (this is a THEME for him) how he is expected to act at times.  He may have to learn from experience that even if he gets upset, he may not get something he wants.  Or, he may have to still do something he doesn't want to do.  There are times I believe this is appropriate for him.  But even with believing this is appropriate at times -- there are so many ways to be flexible, make goals achievable, set kids up for success, try to know what they are thinking, give them chances to decide on things, etc. etc. etc.  All those things can go along with compliance and they need to go along with it, in order to maintain the parent-child relationship, the child's development, the child's experience of being respected and able to make decisions, etc.

 

But I cannot disagree with someone who see that there are kids who are not well-served by focusing on requiring compliance.  I agree with that. 

 

But I am like -- at a certain point, we couldn't go places and do things if there were not some requirements to meet.  It just would not be safe, it would not be possible.  I don't think it is worth it to give up on things that are also good, if they are in the realm of possibility and benefit. 

 

[nature girl]

Lecka, you stated the complexity perfectly. And part of the complexity is that there can be something different behind it at different times...And my difficulty is trying to figure out ahead of time whether she's driven by stubbornness and pushing limits (which definitely happens often, and I thought at first that's what was going on yesterday, although I'm pretty sure now it was something more) or if she's in a certain mood where anything that doesn't go exactly as she planned becomes a huge issue. Since we went from being peaceful, me reading to her at the breakfast table, to her kicking a door, I'm at a loss for knowing when to not reward her for testing limits just to keep the peace.

 

In retrospect, I think she might have been excited by the idea of finishing breakfast on the porch with Dad, and the excitement (and a sense of that desired thing being denied) might have been what drove her over the edge. But on another day, really 9.5 out of 10 days, she'd have been able to get over that pretty quickly.

 

 

But even with believing this is appropriate at times -- there are so many ways to be flexible, make goals achievable, set kids up for success, try to know what they are thinking, give them chances to decide on things, etc. etc. etc.  All those things can go along with compliance and they need to go along with it, in order to maintain the parent-child relationship, the child's development, the child's experience of being respected and able to make decisions, etc.

 

This really resonates with me, thank you. Finding ways to set her up for success, and celebrating with her when she IS successful, are so important. I do it pretty well in ordinary life, but when things get more difficult it feels like more of a crisis situation and I panic. I think I need to get better at thinking on my feet of things I can say to make those crises a "success," before things fall apart.

[kbutton]

Well, I'm not going to say that she doesn't have EF issues, but I'm going to go against the grain and suggest (again, I think) that you find a professional that deals with RAD and start asking some difficult questions. She can have both. 

 

The things you are telling me are strikingly similar to the stuff I hear from acquaintances and friends dealing with RAD.

[nature girl]

In what way? If it was RAD, wouldn't the meltdowns have happened earlier? Other than periods of intense hyperactivity, she really wasn't like this till recently. And ADHD kids have meltdowns too. I'm not saying you're wrong, but I don't want to assume it's something completely different when we already have a diagnosis that can explain it.

[Lecka]

I don't know anything about that issue.  But I think it is a good question, if it could occur later.  I don't know anything about it, though.

 

I wanted to mention, though. something that can be a problem when I want to be responsive and when I also want to be consistent.  

 

Sometimes consistency is my higher value . 

 

My son really, really needs consistency.  He doesn't need total consistency.  He doesn't need consistency at all cost.  

 

But, to a certain extent, I do place a very high priority on consistency.  

 

With another child I could place a much higher priority on responsiveness and a lower value on consistency,

 

That is in context of:  highly valuing both these things.  There are just times when maybe it is not "either/or," but it is "which is getting the main focus, and which the lower focus."  

 

This is a tricky question, too.  

 

I do not do Ross Greene, but I like about his book, he has 3 baskets, and so it is explicit to the child (as I understand it ) ----- some behaviors will have a flexible response, some behaviors will not have as flexible of a response.  This is my broad idea of how his baskets work, b/c I haven't read the book in a while.  I think that it is a good approach on the "consistency and responsiveness" side.

 

It is one of those things that is hard, and you want to think about it, b/c it can be a downfall of being responsive and flexible.  But that is not a reason to give up on being responsive and flexible.  There just needs to be some consistency that makes sense to the child.  

 

But if I think it will confuse my son, if I am flexible in order to be responsive, such that he may feel I am inconsistent and he does not know what the boundaries are, that could backfire on me and lead to him trying to figure out the boundaries.  

 

I still place a very high value on flexibility and responsiveness, though.  

 

This is one of those things that is hard, though.  But there are a lot of ways to be both/and and not either/or.  It is something to think about and try to figure out what balance will be best.  Or, think of ways to make it a both/and situation.  This is where I get a lot of ideas from books, websites, and being around people who have this gift/experience in knowing how to manage this with kids.  

[nature girl]

Yes, good point, and I think this is where the "compromise" could work. Offering to hold the plate so that she can open the door, or if that didn't work at least asking her to ask nicely (which I'm pretty sure she'd do, albeit in the wrong tone of voice.) This way she could understand that her behavior is the wrong way to approach the problem, but that I want to work with her to find a solution.

[nature girl]

(At the time, my approach was to say, "I understand you're frustrated..." at least trying to show her I understood. But I guess it wasn't enough to show her that I was on her side.)

[kbutton]

In what way? If it was RAD, wouldn't the meltdowns have happened earlier? Other than periods of intense hyperactivity, she really wasn't like this till recently. And ADHD kids have meltdowns too. I'm not saying you're wrong, but I don't want to assume it's something completely different when we already have a diagnosis that can explain it.

 

I don't deal with RAD in my home. I can only tell you my impression from what I hear you talking about. 

 

I don't think there's a specific time when RAD symptoms manifest, but I don't know a lot about it. Adoptive parents are led to believe that it's pretty rare, but I am hearing IRL that many people who swallowed this line have been put off from getting timely help due to believing it's rare. They are frustrated with their experiences and want to tell those new, excited adoptive families that this is not rare. They don't want to shatter dreams or be the harbinger of bad news, but they do want families to have support going into adoption. They do want new adoptive families to realize it's not rare, and that they are not alone. 

 

I don't have a lot of time to debate, but I would suggest that if you had reason to think that she could do this task and don't really know what precipitated the meltdown, then you may very well just have a complex set of EF stuff or inflexibility going on. Inconsistency is the name of the game. However, the fact that she seems to do a lot of somewhat naughty, attention-seeking things (as well as sensory-seeking things) gives me pause. That sounds like RAD. And yes, she still can have ADHD or something going on too confounding the symptoms. I hear that RAD behavior is directed the hardest at mom, and then trickles down to others. A lot of SN families see the same thing though.

 

This organization could point you to resources. http://connectionsforlife.org/ Theydeal with issues that overlap. I think you said she's been with you since she was an infant, so some of what they do may not apply. However, here is another intriguing idea from epigenetics about inheriting trauma, literally through DNA, not experiences: https://www.google.com/webhp?sourceid=chrome-instant&ion=1&espv=2&ie=UTF-8#q=trauma%20inherited%20via%20epigenetics