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My child hides under things when he's anxious


Pegs
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I don't know what to do. He's shutting down and hiding at the drop of a hat these days. It's getting harder and harder to get us both out and about. Our world is getting smaller and it's suffocating me. 

Just venting, I suppose. :(

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You want behavioral strategies? You can look at the function of the behavior and ABC it. You want medications? You want a non-medication?

I would ABC as many of the past incidences as you can and try ABC'ing everything for 3 days to see if some patterns become obvious. Do you have a behaviorist? Ours made us check forms to make it easy to ABC behavior. She put in common behaviors and common consequences, so it's super fact to just checkbox and fill in the rest. Even if you have to write it out, just doing that will probably make it gel for you whats going on, what the pattern is.

Is there anything up with you? Our kids co-regulate, so if they're with someone chipper and upbeat they might be fine, but when they get with someone say with a headache or spring allergies or asthma going who is down on their energy, it's really hard for them to stay up and be their chipper selves. So like me, if I have a headache, I'm gonna outsource and call in the troops, because ds co-regulates. He just does. 

Anything else going on? Any changes? Anything stressful? I'm sorry it's hard. I'm just kitchen sinking it here, throwing out ideas. I can tell you that for my ds, usually the under the table gig is what happens after he comes home from something that was very, very, very, very stressful. Like church with no aides. What you might do is crawl under there, make a cave with blankets, turn on a story, bring a flashlight, bring snacks, work on pairing, under the table. Even ask if he wants to build some forts. Sometimes when my ds pulls in like that, it's because his normal closet for retreat has gotten messed up and he doesn't have that to go to. If he doesn't have a space like that, maybe work on setting him up one? 

If you can figure out what the antecedent was, you might be able to fix it somehow, reducing his stress. For my ds, it's sort of a litmus test. Also you could check his genes for anything affecting anxiety. My ds has mild anxiety, and he's only heterozygous for the 5HTP defect. Nevertheless, he's had really good response to it. Might be another piece to look into.

Sorry it's hard. :(

 

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I'm sorry, Pegs. My DS liked to hide under things when he was a preschooler. For him I think the hiding was a combination of sensory avoidance (when things were too loud or too busy) and anxiety. If the two can even be separated into different things for a kid that age.

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I can ABC past hiding incidents pretty easily. The trouble is, the antecedents are generally not something we can avoid - visits to the Dr especially. I suppose we could stop trying online classes? But sometimes they go really well, if he hasn't had to cope with something stressful beforehand. And he does enjoy them when he can participate. I guess I just need to make the day as vanilla as possible if we have a potential trigger coming up. 

I don't think he's co-regulating with me. To be honest he's just not that emotionally aware. If I say that I have a headache and need to rest, he'll bring me a glass of water and then go and play quietly on his own. Sometimes he needs a bit of help getting started on an activity. If I tell him that I desperately need to get out of the house "for the health of my mind," he'll begrudgingly agree to a nature walk or a visit to the beach or playground. So he's kind and caring if told explicitly what's going on for me, but he also can be a little baffled by my emotions if I don't give them words. "Why is there water coming out of your eyes?" "I'm crying because I'm sad. Could I have some privacy please? I'll feel better soon."

I like the idea of joining him in a hidey hole, but we don't really have the space for it. Maybe I could get a little pop-up tent and use it with the Zones stuff we've been (sporadically) working on? Feel like hiding? Time to chill out in your tent! Currently he's using either a cardboard box or his desk, and I don't fit in either.

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We did some exposure (?) therapy for visiting the dentist, it is recommended some times for autism.

Now, my son has been observed a few times and we don’t think he has anxiety.  But if we did I would be pursuing treatment and frankly I hear amazing things about medication.

But we don’t think it has been anxiety for him.

Anyway, with exposure (?) therapy you do repeated exposures, but very small and positive.  As small as it is possible to be.  And if even that is not going to work, heavily pair (aka make it pleasant) to even go near the thing.

So we have had this for a few things, but all when my son was younger.  Which is another reason it doesn’t seem like anxiety with him, lol.

Anyway, for the dentist.  For having a toothbrush touch his teeth.  He slowly acclimated.  He was allowed to handle the toothbrush with no pressure to put it in his mouth or open his mouth.  He opened his mouth and held it open, like he might at the dentist, to get a piece of candy.  Things like this.  We took him to the dentist with siblings but without his own appointment.  Etc.  Over time.  Many dentists will allow kids to come multiple times and see the equipment and possibly get in the chair just to have exposure, but not have a real appointment.

With stores we went in very short at slow times and let him pick a treat, and added time slowly over months.  

With sunscreen we started with lotion, being exposed to lotion, because they wanted to separate the smell and the texture and the letting-someone-apply-it parts.  So he was around family members using lotion, allowed to squirt lotion onto others, allowed to handle lotion, and then eventually he would put on lotion, then put lotion on his face looking in the mirror, etc.

 We did that for months and months, and he did go from me swiping at his face while he was strapped in the car seat, screaming and thrashing, to the next year he could apply sunscreen to his face and let me rub it in.  

Anyway — if the doctor is a particular issue, there might be some ideas there. 

There are probably social story type videos on YouTube, too.  My son likes videos and I basically don’t make social stories (he had great success with one that we read for ages, about times we feel thirsty and asking for a drink when we are thirsty, other than that he doesn’t really like them).  But there are probably videos on YouTube about doctor visits, I have searched things like that sometimes, it can help sometimes.  For my son it has helped more for new places.  

Anyway it was very hard because I had to take him a lot of places we just needed to go, or his siblings needed to go.  We had a horrible experience once when I HAD to fill a prescription for my daughter and my son was just struggling and miserable.  But my daughter needed her prescription and I didn’t have anyone to call.  

I hope you can find something to help.  It is so hard!  He sounds like a very sweet boy, too :)

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We're on a waiting list to see a psychologist, with an appt coming up in June. I'll ask her about exposure therapy, see if she can guide us with that.

I'm not opposed to trying medication. DS has been on valium a few times before attempting vaccinations. That didn't cut it and we had to have his shots done in hospital with the help of some nitrous oxide. I expected the valium to make him a bit sleepy and floppy. Instead he just radiated joy until it wore off. I was like, Wow! This is my kid sans anxiety! He was really happy and content with the valium in his system. Come crunch time he was back under chairs at the Dr's though. I know that benzos are not a long term solution, but I guess what I'm saying is that the little glimpse into his demeanour beneath the anxiety has kind of opened my mind to the possibility of medication. 

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Pegs, what you're describing could be his 'fight or flight reflex' ?   Which is an instant response,  and you said that it happening 'at the drop of a hat'.   The flight response, could be causing him to 'hide under things'?

The fight or flight reflex, causes an instant surge of Cortisol and then Adrenaline.  Which triggers a physical response.  You also noted the effect of Valium, where Valium has inhibitory effect on Cortisal.  Which could be what you are observing?

It would be well worth identifying if this is his issue?   As left unaddressed, it can lead to Adrenal Fatigue with a range of effects.  Though tests of Cortisol levels can be done by taking 'mouth swabs' at different times of the day.  Of particular interest, would be spikes when he hides? 

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The gene we looked at was TPH2, rs4570625, risk allele G. If you run the $69 23andme testing, you can search the raw data for that, see the result, and then boom you know. That's the rs# the PureGenomics site looks at, so that's how I found it. They have a sample report and you can work backwards. But if you're just like cut to the chase, what do I look for, that's the gene. Screws up your 5HTP production to be heterozygous or homozygous for the defect. So if you're GG, you're homozygous for the defect. You take the 5HTP, the anxiety stops, boom. Time Release Natrol, totally cheap ($10 a month?). We're doing it twice a day. New child. 

You can also look at the VDR gene, but that's more methyl levels. You're already doing niacin, right? Or was that somebody else? I get people confused, lol.

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1 hour ago, geodob said:

Pegs, what you're describing could be his 'fight or flight reflex' ?   Which is an instant response,  and you said that it happening 'at the drop of a hat'.   The flight response, could be causing him to 'hide under things'?

The fight or flight reflex, causes an instant surge of Cortisol and then Adrenaline.  Which triggers a physical response.  You also noted the effect of Valium, where Valium has inhibitory effect on Cortisal.  Which could be what you are observing?

It would be well worth identifying if this is his issue?   As left unaddressed, it can lead to Adrenal Fatigue with a range of effects.  Though tests of Cortisol levels can be done by taking 'mouth swabs' at different times of the day.  Of particular interest, would be spikes when he hides? 

And yes, lowering stress is a huge thing in the autism world. It's why we're struggling in church, because they seemed under the impression that if you stressed the kid enough he would eventually cave and cowtow and get with the picture. No, then you just have a non-compliant, stressed kid. My ds, at a different church with significant supports was out, relaxed, interacting, a TOTALLY DIFFERENT child from what the previous church had ever seen. But there's just this quiet assumption that being stressed is ok, terrible stress is their norm, until you get them to a place where they aren't stressed. Then you're like wow, not going back to that. We want NOT STRESSED to be their norm. Dealing with stress, low stress where they're like ok this is a problem and this is what I'll do, manageable stress. Not under the table, wigging out, body in fright/flight stress.

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5 hours ago, geodob said:

Pegs, what you're describing could be his 'fight or flight reflex' ?   Which is an instant response,  and you said that it happening 'at the drop of a hat'.   The flight response, could be causing him to 'hide under things'?

The fight or flight reflex, causes an instant surge of Cortisol and then Adrenaline.  Which triggers a physical response.  You also noted the effect of Valium, where Valium has inhibitory effect on Cortisal.  Which could be what you are observing?

It would be well worth identifying if this is his issue?   As left unaddressed, it can lead to Adrenal Fatigue with a range of effects.  Though tests of Cortisol levels can be done by taking 'mouth swabs' at different times of the day.  Of particular interest, would be spikes when he hides? 

I think this is exactly what is happening. Sometimes after or during a hiding episode he describes a sensation of almost greying out. I guess this is his version of a panic attack? :(

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It happened twice today. Under the table in tears. This time I could actually fit, so I brought him some water and sat with him until he was ready to come out. We distracted and redirected with a movie the first time. The second time he recovered much more quickly and went off to play with the friends we're visiting. 

I'm not imagining this. It is definitely increasing in frequency. I hate the thought of those stress hormones flooding his little body. He's such a sweet, gentle kid.

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43 minutes ago, Pegs said:

It happened twice today. Under the table in tears. This time I could actually fit, so I brought him some water and sat with him until he was ready to come out. We distracted and redirected with a movie the first time. The second time he recovered much more quickly and went off to play with the friends we're visiting. 

I'm not imagining this. It is definitely increasing in frequency. I hate the thought of those stress hormones flooding his little body. He's such a sweet, gentle kid.

What were the antecedents?

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If he's trying to do harder things and has language deficits, it's going to come out as behavior. If he's able to calm with you there, that's a really good sign. Figure out what the antecedents were. It's ok to push a little bit and have things be a *little* hard. We want to control that stretch and bring in more supports, like more language or whatever the piece is. Fwiw, under the table is better than eloping. So like if he's trying to do math with you and he goes under the table and cries, at least he stayed in the room, didn't get aggressive, didn't leave the house. Like there were a lot of other things he could have done and didn't. And I know it doesn't feel that way in the moment, but it's stuff you look at as steps of progress. Like we go from he got overwhelmed and LEFT THE HOUSE for 2 hours... then maybe it's down to he stayed in the house and stimmed and was aggressive, then it's he went to his closet for an hour, then the duration on the in his closet went down, then he started tolerating someone joining him in the room to calm down, then he was able to take a break from his office and return, then he was staying in the office but under the table, then he was... kwim? Like a whole continuum, all with the similar underlying issues but just getting that duration shorter, etc, the ability to use language or make safer choices improved.

Not sure what the antecedents are, but it's always good to work on communication and pre-practicing strategies when they're calm. So you can practice and do drills where you pretend to be going yellow zone and use your language or a break sign or a picture or a secret hand cue and you say what strategy you're going to use. Or you can make a mural together, a sequence of pictures on the wall where you show him going yellow zone and making choices to avoid going red zone. This is the kind of stuff an OT has been doing with ds. It sort of merges the social story concept with Zones with comics. So 4-6 cells with him drawing a situation that makes him go yellow zone or red zone and showing what he might choose to do to deal with it. And draw red zone and show what happens if he makes choices that don't help him deal with it, lol. They do this a lot.

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The first time he was overwhelmed by a rough game with a (much bigger) friend.

Then later I asked him to sit at the PC for an online class. He had been looking forward to it, but freaked out at the last minute. I supported him in telling the teacher he wasn't up for attending today, and then he basically ducked for cover.

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Okay. The second trip under the table was shorter than the first. Much faster recovery. I can hold onto this. 

He doesn't get aggressive or abscond. He just kind of shuts down. The increase in frequency is really bothering me. But maybe I should just be glad that he recovers? I don't know. I think I'll try to get a time with his OT while we wait on the appointment with the psychologist.

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Just my two cents!!!!  I am glad you are getting in with a therapist soon, I think that will be the best thing.

For getting overwhelmed with another child, we had this with siblings and for my son he needed to be able to communicate “I don’t like this anymore.”  He also needed to notice that he was starting not to like it.  For some kids that self-awareness is more key.  For my son it was more of a language issue as he would have a very hard time thinking what to say and saying it in the midst of a less-calm situation.  He worked on some language stuff with therapy (in a category of self-advocacy skills or in a category of initiating language use, both problem areas for him).  I would watch him for clues and give prompts for him to notice or prompt him to say something.  Since it’s all my own kids I am free to call pauses and my other kids have to listen to me.  

For the online class, I think in that kind of situation DO listen to your therapist, but ime if this is a known trigger we would work out a plan ahead of time and probably I would make my son do it for some amount of time, maybe a small amount of time.  Or he might be willing if we made a deal like I will sit with him or something like that.  Or a deal like he can participate in a more minimal way.  Like maybe he has to sit in the chair and watch, but his webcam can be set to where he watches but they don’t see him.

Allowing kids to totally avoid things can lead to an avoidance cycle where they worry more.  But stressing them too much is totally counterproductive.  Totally.  So sometimes you can find some deal where they do a tiny bit, such that they aren’t avoiding 100%, and then slowly over time build on that. 

Also to be on the bright side, if your son recovers quickly then he is probably not flooded with stress chemicals on that occasion.  Or he is  but it’s an amount that he is habituated to (though it could be too high and should be lower in general).  

Kids can take a break to self-calm and that can be good!  If that is what he is doing, that is good.  If that is what he is doing, you would want to help him do it in a more socially acceptable way.  By requesting a break or commenting that he is going to take a break, and then maybe there is a better venue where he can take the kind of break he needs.  But even just saying he wants a break and doing that in a calm, controlled manner can be really good.  That’s a goal for kids who need breaks but need to take them on their terms before things get too stressful.

There are programs aimed at that like “incredible 5-point scale” where kids do check-ins to see if they are getting stressed.  Or adults do check-ins and look for their signs and point them out to kids, to help them recognize them and proactively take breaks.

But taking a break is good, it means the stress chemicals aren’t building up the same way, and kids can come back and be okay.

Getting overwhelmed and not taking a break and not doing any self-calming is when kids are more likely to have the stress chemicals, and they can take days to totally go away, so it is not a good situation, and it makes it harder for kids to know what “calm” is really going to be like if they are frequently having stressful incidents.

There is stuff out there.  Besides Zones, the Incredible 5-point scale is also for anxiety/autism.  And Brenda Smith Myles has stuff.  If you look for them you can see links to other autism/anxiety stuff on Amazon.

Good luck!!!!!!  And for anything I say, my kids don’t have clinical anxiety.  My older son has had situational anxiety and my younger son has had extreme avoidance.  But it’s not the same situation so I don’t think it’s that I know what you should do.  But what I have mentioned doing with making deals and avoiding 100% avoidance has helped my older son, too.

There is a anxiety cycle where avoidance can increase anxiety, and doing even a tiny step can decrease anxiety. It feels mean at first, but I have to keep my older son from 100% avoidance on things he does actually want to do, or ——— well, it has spiraled downward before and I don’t want it to spiral downward again, and this is what I have been recommended.  

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There is an interplay between the mental

and the physical that is hard.  There really are physical symptoms and stress chemicals.  But then there is also mental thoughts that can effect those things, because we do have some control over our body so we can help to either calm some or increase.  

This is where breathing can come in, and relaxation, because the tenseness and increased breathing can also lead to a rapid heart rate (or something) and that is part of the physical side.  

So there is this interplay.

And so both sides have to be considered, that there are mental thoughts and decisions, on one side, and then on the other side there are the physical conditions that are effecting the person.  

There is an article about shutting down, it says if it is increasing it can be because there is more stress chemicals in general, and that leaves the body in a state where things are more easily triggered, which is a bad cycle.  

But then avoidance can also be bad on the mental side, it gives power to the idea “I should be really nervous about this” which does also mean more stress.

So if it’s possible to have just a little stress by approaching it, but not provoking the full stress response, that can actually be less stress  in a way.  

 

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http://docericryan.com/habituation-and-the-fear-and-avoidance-cycle/

I got this from a google search, it seems like what I was told for my older son.

 

https://autismawarenesscentre.com/shutdowns-stress-autism/

Then this article is about the really bad shut down cycles.  I think of this article a lot. 

I think it is a hard balance, because the worst thing is to provoke a full stress reaction.  But then avoiding things is also not good.  It is hard to find that little thing that can be successful.

What I have been told to some extent is, to try not to let things build up again.  Now I know, I can spot things sooner.  I can spot those times of not wanting to do something I know he does want to do.  I can spot those times he doesn’t feel good and think it’s stress-related.  And then I can try to encourage/require/bargain before the avoidance is so engrained.  When it is more engrained it is a lot harder.  So prevention is a lot easier.

But still I am aware my older son is not as severe as other kids, really, so I don’t think it’s like there is some easy, universal solution.

Also it has not been easy here, in the first place.  But both my sons have made progress :)  And I have known other kids to make progress, too :)  

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2 hours ago, Pegs said:

Okay. The second trip under the table was shorter than the first. Much faster recovery. I can hold onto this. 

He doesn't get aggressive or abscond. He just kind of shuts down. The increase in frequency is really bothering me. But maybe I should just be glad that he recovers? I don't know. I think I'll try to get a time with his OT while we wait on the appointment with the psychologist.

I'm with Lecka that you're not gonna like where this is going if he gets to cut a class every time he's anxious. Is it *often* connected to that class? You really need to be ABC'ing this and getting some data. Go through all the occurrences for the last week and figure out the antecedent for each. Start making data. Can't problem solve without that. Sometimes the answer is in front of you and you don't see the pattern till you start writing it down. At least that's how I am.

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We have never done this strategy, but the one Peter Pan mentioned before is called “social behavior mapping” and you can google it and see samples.  

It’s not that you “have” to do an online class.  Maybe it’s not the right thing for him.  Maybe it’s too hard right now.  But if that’s the case — you drop it.  What you don’t do is a back-and-forth where you are going to do it but then he doesn’t do it, and he gets more and more anxious about it.  You either don’t do it.  Or, you do it in some limited or circumscribed way that he is willing to do and you are able to plan ahead with him.  Now it has a hard start time which will be harder than if you could be doing something where there’s not time pressure.  Though if you asked the teacher he might be able to join earlier or later in the class.  Edit:  if you think he would be fine 5 minutes after starting then I think it’s fair to say “hey, I think you will be fine in 5 minutes,” or set a timer and after 5 minutes he can stop or keep going as his choice, if he is feeling better once he has gotten started.... things like that — you will know how he is, if that is reasonable or too much to ask.  This kind of deal works with my older son.  If something like that would push him into shutting down then it’s bad!  It just depends.  

But the back-and-forth isn’t good.  

It was very hard for me as I had also been supporting my son in avoiding things that made him uncomfortable.  I thought it was nice!  It kept him from getting upset!  But my outcome was not that he got less anxious and did better the next time, my outcome was he got more anxious and did worse the next time.  

Now the thing is, nobody is saying force kids to do things with no supports, don’t care about them, give them no emotional support, etc.  

So that is where the therapist came in, for putting it into practice and deciding what is fair and reasonable for my son, what is fair to expect, what is not fair to expect, and how to get buy-in, and how to figure out a small step in the right direction, etc.

Then a hard part is that — okay, here is the dynamic I had with my youngest son.  He would get upset and I would remove him from the thing making him upset.  So then if I changed to wanting him to use his words to ask to leave, but he was very used to just getting upset, even though really it was a fair expectation for him to use his words....... because the current pattern he was used to was getting upset, it was hard for him to change that pattern.  And then I had to change my part in the pattern, too.

It was not as easy as just saying, “hey, from

now on use your words when you want to leave,” and then he just starts using his words the next time.  That was not what he was used to.  So then I am stuck reminding him to request to leave.  And people looking at me like “why don’t you just take him, he wants to leave.”  But if I want him to ask to leave then at some point I have to want him to actually ask to leave.  He needs to be able to speak up for himself.  

Anyway, it is hard.  

And it depends on the situation/goals.... I could have a goal one time that he asks to leave, but we will leave immediately if he asks, or at least immediately take a significant break.  Another time I could have a goal that if he asks to leave, I ask him if he could wait a few more minutes.  It just depends.  

But bottom line if there is a new skill to practice in an uncomfortable situation — it’s not easy, it is stressful and hard,  but if it’s not TOO stressful and hard, then in theory it will get easier in the future.  That is the theory.  

Also, the theory is that internally kids have the same kinds of things going on, that can manifest externally as withdrawing, shutting down, or acting out.

So you can see it lumped in with acting out.  And then a lot of parents will say their child would never do that.  That is fine.  Some things will be different but a lot of things will be the same, for things to try, whether a child acts out or withdraws.  

Also you might look at “home base” strategies.  There are ways to let kids go to home base without letting them avoid things.  Its part of home base.  It should be nice for the kid but not just a way to avoid things.  So anyway — I think that is something to look up and then maybe the therapist would have suggestions that way too.  It is supposed to be a good strategy.  

It is a little hard when there’s one hand, we want kids to take breaks when they need to, but we don’t want kids to avoid things by saying “I need a break” whenever the thing they are avoiding comes up.  But there are strategies to address that.  It sounds like he might like that kind of thing, though.  

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14 hours ago, Lecka said:

 

I think it is a hard balance, because the worst thing is to provoke a full stress reaction.  But then avoiding things is also not good.  It is hard to find that little thing that can be successful.

 

Yeah, this is where I'm struggling. I had him actually attend the class yesterday to tell the teacher he wasn't feeling up to it. The hiding came after that - it's not something he's doing in order to get out of class. He's the only kid enrolled and the teacher has been really understanding, plus she's seen him on good days where he's been really engaged and had a great time. I hear what you're saying about either committing or dropping it. I need to give that some more thought.

Thanks for the links. I'll go read them now.

 

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14 hours ago, Lecka said:

...Or a deal like he can participate in a more minimal way.  Like maybe he has to sit in the chair and watch, but his webcam can be set to where he watches but they don’t see him.

Allowing kids to totally avoid things can lead to an avoidance cycle where they worry more.  But stressing them too much is totally counterproductive.  Totally.  So sometimes you can find some deal where they do a tiny bit, such that they aren’t avoiding 100%, and then slowly over time build on that. 

Thank you. Yes. These have been my thoughts too. Last week he did the class via me while he peeked through a hole in the cardboard box he was hiding under. The teacher was amazingly cool about it. I was so grateful.

I think next time we'll attend for the first five or ten minutes, then do the rest as homework.

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27 minutes ago, Pegs said:

Yeah, this is where I'm struggling. I had him actually attend the class yesterday to tell the teacher he wasn't feeling up to it. The hiding came after that - it's not something he's doing in order to get out of class. He's the only kid enrolled and the teacher has been really understanding, plus she's seen him on good days where he's been really engaged and had a great time. I hear what you're saying about either committing or dropping it. I need to give that some more thought.

Thanks for the links. I'll go read them now.

 

Maybe online classes aren't a good match for him? They're sort of abstract to understand (a person on a screen) and don't make it easy for the person to pair or change up their methodology. Like if they were in the room with him, they might see a channel to reach him with (more kinesthetic, play a game, etc.) and bring that in. They're sort of limited by the methodology. 

How does he do with phone calls? I think they're kind of abstract for my ds, and he talks on the phone very little. He can some now, like he can answer the phone and talk with me, but it's not really a wow great way to communicate with him. I don't know, just throwing that out. My ds is very kinesthetic, so somebody working with him needs to have that option. But if your ds doesn't need that and is normally good with a solely auditory and visual approach, might be fine.

11 minutes ago, Pegs said:

Thank you. Yes. These have been my thoughts too. Last week he did the class via me while he peeked through a hole in the cardboard box he was hiding under. The teacher was amazingly cool about it. I was so grateful.

I think next time we'll attend for the first five or ten minutes, then do the rest as homework.

Is this class incredibly valuable?? Why are you keeping it if it's that stressful to him?? If he wants to be in the class, tell him to come out. If it's that stressful, then maybe treat the anxiety and reapproach the class gig later. Maybe he's not ready to learn that way, even if it's good stuff. It sounds like it's stressing him out if it's happening week after week. Can you just cancel? He's 8. You can drop a lot and still be fine when they're 8.

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We could totally drop it. Yes, that is always an option. But he has phone calls and video calls with friends and family daily, and we do online violin lessons with another WTMer. I don't think the format is way out there unfamiliar to him. 

He's also been under chairs at vision therapy and the Dr, and when things go wrong in games with friends, and once or twice at mealtimes if he feels too anxious to eat. So we could drop the class, but stressors abound anyway. And at least with the repeated exposure and an understanding teacher, I feel like this could be an opportunity for him to learn other ways of expressing his discomfort, if I can just figure out how to help him with it.

Does that make sense? I'm worried I'm just talking in circles now. You've both given me a lot of advice and I need to read through it all a few times and figure out what it all means for us, going forward.

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First, I’m really impressed he talked to the teacher himself.  That is really good!

Second, I like your idea to plan on 5-10 minutes for the class.

The main thing to keep in mind is “end on success.”  That means ——— stop while he is doing well, don’t think “he’s doing so well we can do a little more” unless he asks to do more or says “I don’t want to stop” or something.  

Then ideally you have ended on success, the plan succeeded, you think he did a good job, he thinks he did a good job, and there is a good feeling.  

It’s the difference between ——— say, expecting 60 minutes, the child does 30 minutes, is a wreck, and gets negative feedback of “I didn’t make it through the whole time, I failed, I can’t do this.”  

Even with doing a less time, since less time is what is planned, then the child isn’t a wreck and can feel like “I did it, maybe it’s not so bad.”  

There are other ways to make classes easier in general.... doing some easier work, mixing in some preferred interests, scheduling short breaks, requiring fewer verbal responses and allowing pointing instead, or providing more wording so the child doesn’t have to come up with as much of the language (this can be done by offering choices or by just using more language before the question or during the question, that could be used in the answer), things like that.  You could see if he has an easier time when there is more visual or written and he doesn’t have to do as much listening.  Or anything like that if there are things he has an easier or harder time with, and you or the teacher can adapt to make it easier and then adjust over time.  

 

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Pegs, I would  return to the idea of arranging tests of his Cortisol levels with his doctor.  Which simply involves taking mouth swabs throughout the day and evening.  This will identify if he has a high baseline, and whether spikes are occurring when these episodes happen?

If Cortisol isn't the problem, then you can rule it out.   But if it is, then you need a very different approach, rather than just trying to avoid triggering it.   Where the underlying physiological cause needs to be identified, and managed.  So that the both the baseline and spikes of Cortisol need to be reduced.   As it has other effects, where its action on growth hormones can reduce growth.  Also its effect on Glucose, can result in Diabetes.  

Though fortunately it is relatively easy to do these saliva tests.

 

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Pegs, are you working with a behaviorist or other professional who can help you sort this out? 

For us, sticking with something stressful on the theory that it will somehow miraculously become less stressful doesn't seem to work. Maybe you need someone who can work with him in person to give you some feedback? Then it can fit your whole reality, not just the pieces we're hearing. 

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16 hours ago, geodob said:

Pegs, I would  return to the idea of arranging tests of his Cortisol levels with his doctor.  Which simply involves taking mouth swabs throughout the day and evening.  This will identify if he has a high baseline, and whether spikes are occurring when these episodes happen?

If Cortisol isn't the problem, then you can rule it out.   But if it is, then you need a very different approach, rather than just trying to avoid triggering it.   Where the underlying physiological cause needs to be identified, and managed.  So that the both the baseline and spikes of Cortisol need to be reduced.   As it has other effects, where its action on growth hormones can reduce growth.  Also its effect on Glucose, can result in Diabetes.  

Though fortunately it is relatively easy to do these saliva tests.

 

Okay. I'll ask the Dr about this. 

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22 minutes ago, PeterPan said:

Pegs, are you working with a behaviorist or other professional who can help you sort this out? 

For us, sticking with something stressful on the theory that it will somehow miraculously become less stressful doesn't seem to work. Maybe you need someone who can work with him in person to give you some feedback? Then it can fit your whole reality, not just the pieces we're hearing. 

No. I'm hoping the psychologist will be able to help.

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He hid under things this *several times* at vision therapy today (our last session for a few months), and every time the VT was able to gently negotiate his engagement with her. I was so impressed! I've sent her an SMS to say thanks.

DS and I brainstormed some calming activities on the way home, so he's working on that now, and hopefully he can enjoy his online class later today. I worded up the teacher to say that if he's still very anxious by the time we get started, we'll probably just try it for ten minutes. 

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It didn't last. Yesterday was really tough on DS and he couldn't participate in his horse riding lesson, which is usually his favourite time of the week. We gave it a go then left early, rather than leaving him there sitting and fretting.

I'm learning though that it's not so much about particular events being stressful, but more that sometimes things are too much for him if he's already in a state of anxiety. I need to keep on top of gently pushing when he's primed for it, and respecting that he's overloaded when he's, well, overloaded! 

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Poor boy! I know, it's hard. Yes, if he's maxed out from one thing, then he doesn't have a lot of reserve to handle the next. Really, I keep harping on it, but doing the genetics and working on the things we found made ds a lot more stable, a lot more consistent. Like if you just talk to your behaviorists, they'll be like oh yeah baby we're gonna ABA that behavior. Well we did ABA, and my ds needed more. Or, as our behaviorist put it, he needed the physical help (could be meds, we used supplements) that let him be ABLE to receive the good behavioral instruction he was getting.

So for us, treating it as complex, rather just a single facet that he could just think away or will away or strategize away, was really key. And you know your ds is 8. When my ds was 8, I was putting up with behaviors that now, as my ds approaches 10 I'm like OH MY LANDS THIS HAS GOT TO STOP NOW, kwim? So I get why you're like ok let's be patient, let's see what can change with a strategy. I'm just saying for us it didn't change, and he was still having those behaviors.

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7 minutes ago, Ravin said:

Pegs, with it getting worse, I suggest you get him in for a psychiatric workup for meds as soon as possible.

Yep. I'm on it. We're seeing the paed tomorrow to get the appropriate referral. 

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  • 4 weeks later...
On 5/7/2018 at 9:51 PM, Pegs said:

Thanks, M. I'm having a look now.

Pegs,

One thing I should have clarified! I only know about Seasonal Affective Disorder from coming across it in the multitude of autism books I have read. It is not something we are dealing with. I gave you the links as something to look into since the behaviors seem to coincide with the seasonal changes where you live.

I am explaining this to let you know that we do not use any of the supplements mentioned in the second link (ETA: Except for low doses of Omega 3 for which our pediatrician is aware of). If you do decide to go with any supplements, please consult with a doctor and do your research on possible side effects. Here's something I found on 5HTP:

https://www.webmd.com/vitamins/ai/ingredientmono-794/5-htp

Hoping you have some answers by now.

Wishing you all the best,

M

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Thanks M. 

Things are up and down here at present. We spent four days at home then managed to get out two days running. I'm not really seeing a trend in either direction.

Waiting on appointments in late June and early July.

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I'm sorry ☹️! I wish answers and resolutions were a bit easier to come by. For all our precious ones!

I'll be gone again but I will visit your thread hoping to see some positive news.

Hugs,

M

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