cognitive inflexibility

[smartyjones]

[quote name='ajcire' date='Jan 8 2010, 09:49 PM' post='51173'

With my son it is that cut and dry....if he tells me he will do something after a certain demand is met, he will do it. It's as if nothing ever happened and he's fine... It's beyond him being a brat and just wanting to get his own way though. He truly can't get himself together until it's done. I never thought of it as ocd with him but more as an inflexibility but I don't know.

 

ajcire - sounds very similar! so what do you do about it? this one, i can cut him some slack b/c we did plan in Dec that the friend would come here, he was excited about it b/c this kid has never been here and that plan got messed up. so i see his disappointment - but it's so extreme to refuse to go until that plan has been satisfied. how do you deal with these situations?

[smartyjones]

It sounds like he was told one thing,expected that to happen and when it didn't all heck broke loose.

 

First, I would really think hard about what else sets him off or what he does at his own home that bothers him. If you tackle what bother him at home first that may cause a chain reaction into helping him in other situations.

 

 

yes, i do feel for him that it wasn't what he had in mind for the next playdate with this kid. it's just so extreme and so non-bending - not even entertaining the thought of bending.

 

yes, thank you - maybe we can conquer something similar and that can be a reminder.

thanks!

[ajcire]

I am always reminding my son that sometimes plans change and it is nobody's fault... things happen. He only has problems with this when everything else is off for him too.

[smartyjones]

This isn't the kind of "just right OCD" behavior I'm familiar with because it seems to have some premeditated, logical basis, whereas the "just right" stuff seems to occur many times without any logical backstory and without any warning.

 

So we might ask him if he can think of another way he and we might have handled that situation better so that neither he nor his friend was disappointed. Or the next time we plan an event, we'll make sure he's in on the planning and try to prepare him for some contingencies in the event something shifts and he's called upon to "go with the flow" instead of have it 100% the way originally planned.

 

 

good thoughts - i'll have that discussion tomorrow and see if we can turn something positive out of it!

 

what would 'just right' OCD be to you - like having papers lined up correctly? since you've dealt much with OCD w/o the pandas element - do you believe it have to be tied to a web of thoughts and consequences or can it just be b/c that's the way it's supposed to be?

[wornoutmom]

this is very much my son. He has a "need to know" OCD where he needs to know what's happening, what the schedule is. He can't feel in control unless he knows. Then if it changes, or doesn't match the "order" that's in his head, he loses it. Most of the meltdowns/rages in the past week have been from this theme. With OCD, a thought can get "stuck" and keeps replaying in the head. My thinking would be that your son's meltdown resulted from the "order" being wrong and this thought being stuck. And having to do things in a certain order is most definitely OCD. When that order can't be fufilled, the anxiety gets fueled and you get the flight or flight reaction (similar to if you kept a child who thought he was contaminated from washing his hands).

[thereishope]

My son had an experience when he went to speech therapy at the elementary shool while he was still in preschool. They were walking back to meet me after the session ended. Mid way back he freaked out because they walked up a different set of stairs they always do. I mean this was a full fledge meltdown in front of everyone. It was awful. Even when I tried to calm him down, he just continued to freak out. It was that unbending, unflexible part that you described. It just wasn't what he was expecting. He expected the other stairs. It was at that moment we started "warning" him of changes in regular routines (when we could warn him). Eventually it was no longer a probelm and eventually we no longer had to warn him.

 

 

It sounds like he was told one thing,expected that to happen and when it didn't all heck broke loose.

 

First, I would really think hard about what else sets him off or what he does at his own home that bothers him. If you tackle what bother him at home first that may cause a chain reaction into helping him in other situations.

 

 

yes, i do feel for him that it wasn't what he had in mind for the next playdate with this kid. it's just so extreme and so non-bending - not even entertaining the thought of bending.

 

yes, thank you - maybe we can conquer something similar and that can be a reminder.

thanks!

[peglem]

I do some online talking with adults who have aspergers and autism symptoms. It helps quite a lot to understand my daughter. This seems to be very common among them and they call it "blueprinting." But, they seem to use it as a kind of tool to keep anxiety over an event in check. So, if they have it all planned and know exactly what will happen and how, the anxiety is lower. The problem is, life is very dynamic and these blueprints seldom come off as planned and then there is a lot of anxiety.

So, I'm thinking part of the reason your son wants the play date at his own house is that he has a greater sense of control over the blueprint that way. He can plan what they will play and what not. Also, at his own house he knows the rules and expectations better than at another person's house. Sorry if that is way off base. Just thought I'd throw it out there as a possibility.

[faith]

smartyjones,

I just wanted to give my take on this. I don't recall if ocd is part of your son's symptoms, but to me, this sounds more like separation anxiety. I've dealt with this more when my son was a bit youger, and I can't recall how old your child is, about 5 or 6 I think? My son always wanted friends to come here, he would go to someone else's house, but I had to go to. it took a while to finally get him to stay at someone else's house without me, so usually just had the kids come here. Also, he loves to have sleepovers and has had a few, but he never would go to someone else's. So jus given the situation you describe about a playdate, it sounds to me that he may have fussed alot because he didn't want to go alone to someone else's house and may not have known how to articulate that, afterall, he is still kind of young. Even tho they want to see their friends and play, he may just have an anxiety about wanting to be on his own turf.

 

Faith

[smartyjones]

With OCD, a thought can get "stuck" and keeps replaying in the head. My thinking would be that your son's meltdown resulted from the "order" being wrong and this thought being stuck. And having to do things in a certain order is most definitely OCD. When that order can't be fufilled, the anxiety gets fueled and you get the flight or flight reaction (similar to if you kept a child who thought he was contaminated from washing his hands).

 

this is the thing i just can't get about OCD - does it have to be tied to other thougths of calamity or can it just be that he wanted that order and it's not fulfilled and that's that without anything else?

 

so what to do about it? push it so that things are out of order and he has to deal with it to get over it? if it had been some other situation, i would have done things differently -- one other time he didn't want to go to someone's house for XYZ reason, i can't remember. i said fine, you can stay in the car if you want, you've got books, you can read, we planned on going and we're going. by the time we got there, he'd decided he did in fact want to go and it was all okay. however, this was my friend and her 2 year old - so neither would care if he obnoxiously threw a fit that he didn't want to be there. today, this other kid loves my son and would be so upset if he heard him say he didn't want to come to his house so i couldn't just push on.

 

generally, what's the answer? continue with the plan that is out of order?

[thereishope]

The majority of my son's OCD was compulsions that were not linked to obsessions. He didn't think if that he didn't get the cup out of the cabinet a certain way that he would die. He just needed to get the cup out that particular way every time. The psychologist said that does happen with OCD. It doesn't always have to be linked to an obsession. He had a lot of rules in his head.

[Megs_Mom]

Ok, so OCD is illogical. It really doesn’t matter “why” things are happening. It just matters how you treat it. Being the parent of a child with OCD (whatever the reason) is really hard. And with a PANDAS child, I’d be remiss if I did not say to treat them medically. But while you are doing that, you can do therapy as well. This post is not really for those of you whose kids have low level OCD. It’s for parents whose kids have multiple exacerbations per year, or who have chronic PANDAS, or who find that OCD or panic or agoraphobia seems to be sticky, and remains after the child seems to be healing on other fronts. OCD is an awful horrid disease. If it is affecting more than an hour of your child’s day, preventing them from doing things that they love, or causing conflict in the family or school – then I would recommend adding ERP therapy to your routine of abx, omega 3’s, vit D, etc. Go down both roads at once.

 

For us, ERP has become a way of life. EPR stands for Exposure and Ritual Prevention Therapy. Essentially, a person tries to deliberately stand the anxiety caused by an obsession without participating in the compulsion/ritual. For adults, the fastest therapy is to take pretty extreme anxiety steps. But for kids, you are mainly concerned about motivation. So you can take tiny tiny tiny baby steps, and celebrate any little success or even effort. And reward the heck out of it appropriately. No child wants to experience fear. So as a parent, you get to figure out how to motivate your child. And this means finding the smallest level of anxiety and helping them survive that.

 

So, here are the steps I’d recommend:

 

• Help your child understand OCD – read the book “What to do When Your brain Gets Stuck”. It’s an awesome workbook , and kids with OCD LOVE it!!! If too advanced for a young child, read it yourself, and then make up exercises appropriate for the age you are working with.

• Name the OCD – let you child name it. Use appropriate language. Don’t ever say “you need to do this”. Always say something like: “I am sorry that OCD is giving you a hard time about this. OCD is so mean. I know that Meg can do this and I know that once you have practiced the tools to beat up OCD, you’ll be able to do this again”.

• Break down any fear into tiny tiny steps – and don’t worry about the logic behind the fear. Yep, a lot of it is BASED in logic – but taken to extremes. All you have to worry about is being really creative, breaking down the steps, and encouraging and rewarding your child.

 

Ok, so almost all OCD is “just right”. OCD is all about feeling like if you take an action – or don’t take an action – that the world will end. There are all kids of ways to express this – stopping doing things, repititvely doing things, worrying about getting sick, feeling wrong – but in the end it is all illogical. So quit worrying about “why” they have a fear. It’s not because of a divorce, or a spanking, or a “bad-parent” moment. It’s not because you expected too much or too little or taught them to wash their hands, or told them not to eat to much sugar – or whatever. It is illogical. It is OCD.

 

• Now, you need to learn to use a fear thermometer. It’s in the book – or you can read “Up and Down the Worry Hill”. So a 1= no big deal, I can do it”, a 5 = “that sounds really hard, I might need help”. An 8 = I think I may freak out. A 10= I could never ever ever ever do that even if you took me to Disney afterwards.

 

I like to explain the fear thermometer by using a pain thermometer. A 3 might be stubbing a toe. A 5 might be falling off the jungle gym into a thorny bush. An 8 might be 2 broken legs. And a 10 might be breaking both legs, arms & all your toes. I like to use humor, so after giving a few examples, I’ll ask what they think a 10 is. Then I try to top it with something crazy. That drives down their 10 to an 8. Then they can try to top me.

 

Once you understand a fear thermometer, then you start to map a hierarchy of the fear you are working on. So in this case assume that going to this child’s house instead of yours, is a 10+. So start thinking creatively of alternatives. If the child cancels, what else can you do? Ask your child to rate the following (I like to roll play to see what the fear might really be – kids take roll playing very seriously. We often role play an imaginary situation before actually trying the real thing). Here are some examples:

 

• The child cancels – you invite another child over instead.

• You meet the child in a playground instead of their house.

• You meet the child in your yard, instead of your house.

• You meet the child in your house, but only for 10 minutes and then you go to their house.

• You meet the child in your house for an hour & then you go to their house.

• You meet the child at McDonalds.

• You go to a movie if the child cancels.

• You have a playdate at your house with this child & invite 2 others, so it is a different playdate.

• You meet 3 kids at a different child’s house, but include this one.

 

So you get the idea. Then you find the one that is a 2 or a 3 on the fear thermometer. And you role play it (imagine it happening) 4-8 times with your child. You can make it funny once the initial panic about this is over. You set up a reward program for imagining that this happens. Maybe an extra 15 min of TV. Or staying up 30 min late. Or points towards a new important toy, that sits on a special shelf. Or a dollar store box of stuff. Whatever – act like you are a teacher of 5 year olds and you’ll get really creative.

 

Then you actually try the situation you are working towards. Keeping in mind that you do the smallest possible situation. I don’t really like this situation as a starting point – I would guess that if you have this big level of “cognitive” OCD – then he likely has some smaller inflexible things that are also OCD. If so, do the smallest thing first.

 

Sorry for the long post. I just think that many kids and parents can learn tools to make their lives so much easier. But very few therapists are really trained in pediatric ERP therapy for OCD. So a lot of the work goes to you as a parent – and it is not intuitive parenting. It is time consuming and is a lot of work for you and the child. But when it helps – it is SO rewarding to see your child having just a little bit of control over this awful disease that can consume their lives.

[ajcire]

SmartyJones, I do think our kids sound similar in this way. I totally get what you are saying. I know if my son had the episode you described that it would not have been about going to someone else's house or what not but strictly about the fact that what was supposed to happen didn't.

 

This happens all time for us if he is in that mode. His reactions are not as strong as your ds's were and I think in the end my son would have gone rather than to give up the playdate but it would have been a big battle first.

 

Some of my son's little episodes of those types things could really be ones that any child might have but he takes it farther and gets really stuck at it. It's not always what he is reacting to that stands out to me but the way he reacts to it and how he can't get himself back together again. I can have the same exact thing happen and get 2 totally different responses from him depending on when.

 

 

Meg'sMom, you should so totally open a practice to work with parents and caregivers of children with ocd!! You really have such an amazing grasp on it.

[Megs_Mom]

I was tired last night & missed a few points. Once you have practiced one situation that is a 2-3 on the fear thermometer, then practice it again - about 4-10 times, until it is really boring. Then move up to some other breakdown of the situation. Keep working on different examples, until you work up to the original situation. This means you may have to create this situation again and again. As you continue to work up the fear heirarchy, take the temperature again, every week or so. Things that were rated an 8 should start to slowly come down. Don't remind the child where they were, just ask about the situatation again. Then afterwards, you call tell them a few, and how they are coming down on the thermometer!

[Megs_Mom]

I was tired last night & missed a few points. Once you have practiced one situation that is a 2-3 on the fear thermometer, then practice it again - about 4-10 times, until it is really boring. Then move up to some other breakdown of the situation. Keep working on different examples, until you work up to the original situation. This means you may have to create this situation again and again. As you continue to work up the fear heirarchy, take the temperature again, every week or so. Things that were rated an 8 should start to slowly come down. Don't remind the child where they were, just ask about the situatation again. Then afterwards, you call tell them a few, and how they are coming down on the thermometer!

 

And another point - as you are exploring and rating the heirarchy, then you may discover that some other type of OCD is actually the issue as others have suggested - such as contamination, sep anxiety, etc. Then you add in other Heirarchy ideas to start exploring this - you don't really have to ask the child about the "cause", you just propose a ton of ideas, such as "what would the fear thermometer be if:

 

* Sep anxiety - Mom goes with and comes in to visit with his mom.

* Sep anxiety - Mom goes with and stays in the car in front of the house making calls.

* Sep anxiety - Mom goes in with you, then leaves, but calls every 30 mintues to see if you want to leave.

* Contamination - You go but bring your own toys.

* Contamination - You go to his house, but play outside of his house.

* Contamination - you go to his house, but you don't use restroom, and you bring your own food.

 

Then if you find that he starts to talk about something that bother him, you can start breaking that down. A LOT of the time, there is more OCD there than you are seeing. It's like the tip of an iceberg is what you are seeing. The rest is under water until you start draining the lake ocean one drop at a time. It can be very illuminating talking about heirarcy items, as they may start suggesting things that would be "impossible" or things that would be "easy". Try hard not to react with things like "oh honey, you did that last week, you can do that". Or "don't be silly, that isn't scary, you have done that before". I make a lot of these normal mom statements early on - and it would make her SO mad. She couldn't explain at the time, WHY it was now a problem, so she'd dig her heels in and try to make sense about things, and pretty much make up reasons why she could not go places, or whatever. But be reassured - once you have a language to talk about it, it is SO much easier.

[MomWithOCDSon]

what would 'just right' OCD be to you - like having papers lined up correctly? since you've dealt much with OCD w/o the pandas element - do you believe it have to be tied to a web of thoughts and consequences or can it just be b/c that's the way it's supposed to be?

 

Our son's OCD has never really taken the "ordering" or "organizing" form, actually.

 

"Just right" for our DS12 is a little more ephemeral. It's more like he cannot begin a task (eating, reading, a homework problem) because something just doesn't "feel right." So he can sit for an entire math period with a quiz in front of him and not answer a single question, not because he doesn't know the material or because he's literally afraid of it, but because it doesn't "feel right" at that moment. So his OCD puts him in lock-down.

 

There's an excellent article on the OCD Foundation of Chicago web site called "What the Heck is Obsessive Slowness" which does a better job of explaining how such issues as "just right" impact one's ability to perform tasks in a timely manner (or rather, NOT in a timely manner!). I've found a number of excellent articles on this site to be really helpful in understanding some of the behaviors and what's going on in his head that he's unable to fully articulate. There might be one available that would speak more directly to what you're dealing with, too; look under "Expert Perspectives."

 

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Does that answer the question? Just as a follow-up, we are finding even this "just right" behavior is fading over time with the abx; what we seem to be perenially stuck with, however, are the contamination fears. Ugh!