Any advice for this flavor of OCD?

[peglem]

My daughter (nonverbal, communicates poorly, so can't discuss much with her) has this thing where she fixates on something that is clearly upsetting her. Its usually a toy or something that she used to enjoy, not something that is inherently upsetting. She will look at or clutch the item, clearly terrified. On good days she will allow us to remove the item from her presence. On a few terrific occasions she has given us the item to clear it away. But too many days are not like that and we cannot get her to give up the offending item.

Elevator avoidance has turned into this. If she can see the elevator from the waiting room- she will not go back to the exam room w/o a LOT of help and coaxing. She does not want to go on the elevator (or at least cannot get herself to that point). And while in the waiting room and she is looking out at it- there is clearly a lot of anxiety from it. But, by golly, she is unable to tear herself away from it. Last Thursday, after IVIG, it took us 45 minutes to get her out of the hospital lobby- after we had already come down the stairway, because she was fixated on the elevators. That sure is a long ending to a long day!

[MomWithOCDSon]

My daughter (nonverbal, communicates poorly, so can't discuss much with her) has this thing where she fixates on something that is clearly upsetting her. Its usually a toy or something that she used to enjoy, not something that is inherently upsetting. She will look at or clutch the item, clearly terrified. On good days she will allow us to remove the item from her presence. On a few terrific occasions she has given us the item to clear it away. But too many days are not like that and we cannot get her to give up the offending item.

Elevator avoidance has turned into this. If she can see the elevator from the waiting room- she will not go back to the exam room w/o a LOT of help and coaxing. She does not want to go on the elevator (or at least cannot get herself to that point). And while in the waiting room and she is looking out at it- there is clearly a lot of anxiety from it. But, by golly, she is unable to tear herself away from it. Last Thursday, after IVIG, it took us 45 minutes to get her out of the hospital lobby- after we had already come down the stairway, because she was fixated on the elevators. That sure is a long ending to a long day!

 

Peg --

 

From our experience, this falls into the category of "obsessive thoughts," and it is one of the most insidious, hardest to address pieces of OCD we've had the misfortune to confront. I mean, you can help block some of your child's OCD behaviors, but how do you block or stop them from thinking a thought?!?! Our DS has expressed, and his ERP therapist zeroed in on the fact, that the reason he keeps circling back around to the distressing thought is usually one of two reasons: 1) he thinks if he "keeps it in mind," it'll help him avoid doing whatever it was he did originally that upset him; and 2) he thinks that if he analyzes it enough, he'll figure out WHY it bothers him, figure out that "equation" of the distress and be able to "solve" it.

 

Yours is even a more special circumstance as your daughter is nonverbal. We started our DS with a "chant" or "mantra" when the thought would creep in: "X won't hurt me. X doesn't control me. I don't have to get made at myself for X." Is there any kind of equivalent for your DD? Maybe a white board? Or maybe you could replace that distressing thought with a thought of something she especially likes . . . a song, a color? Basically give her something pleasant so that she can eventually turn the association around from something unpleasant to pleasant?

 

Maybe Meg's Mom will have some more/better ideas for you, too. Sorry you're having to deal with this.

[Megs_Mom]

Hi Peg – I am rather fascinated by this post – and have been thinking about it for a few days. How do you do ERP for a child that cannot clearly communicate her fears? Honestly, I would be hard pressed to give you any advice, as you are so attuned to your daughter’s needs. You really will be the best person to figure out how to do ERP for your daughter. All I can do is give you some ideas that would work with a verbal child, and then you can try to adapt some to your daughter and see what works. I don’t think you’ll take offense if these are not right for your child – and maybe they will help someone else. I’m not a doc – just a mom, so take it with a grain of salt!

 

I’ve been thinking back to how we’d work with a 3-5 year old, assuming that is where she is developmentally. OCDMom is correct, these are intrusive thoughts – most likely . If she could talk, she would likely tell you something astonishing, like she is afraid the doors will crush her, or that the elevator will fall, or that it will never open – or even something like if you get into an elevator, you mom will die the next day. Or even something really simple, like if I touch the doors, I will throw up”. Intrusive thoughts are similar to what you and I experience when we are anxious about something – but they tend to feel much more intense and “real” to a person with OCD – and they tend to flood into their brains much more often. It really did not matter too much what the thought was – it mattered what she was avoiding or fixating on.

 

When we did ERP for a 3 year old, we did the very simple mantra technique, combined with beating up the worry bug. We told her that everyone has a little worry bug that flies around their heads telling trying to get them to NOT do things and trying to make them worry about things. We explained that we could smack the worry bug just like a mosquito. She used to enjoy helping her dad stomp in into the ground, putting it down the garbage disposal and throwing it out the window. It was very concrete in her mind at that time. We also did a mantra – which was composed of the following 5 steps: 1. Acknowledge that the thought was caused by the worry bug. 2. Say what he is trying to trick me into doing and say that we don’t have to listen to him. 3. State what we want to do. 4. State that we can do this thing no matter what. 5. Say that this is hard, but we can have a great day. Generally, for a 3 year old, this sounded something like this: “That is just the stupid worry bug. He doesn’t want me to go on the playground so he is telling me about germs. I WANT to go on the playground, and I can do anything that I want. I don’t have to listen to the stupid worry bug. I am going to go on the playground, and I am going to have a great day today.” (she LOVED being able to say the word “stupid”, as this was normally not allowed). I often would start this myself and she would listen & cry. Then I would ask her to think it with me. We would repeat it up to 20 times in a matter of 10 minutes or so. She would slowly work up to saying each sentence right after me. If she would sit with me while we said it, or say it herself, she would get a prize from the prize box. If she actually did the thing she wanted to do, she got another prize. But for that age, in many ways, it was her parents doing the work, and her listening – her OCD at age 3 was overwhelming & effected everything that she did – including eating – so we did ERP pretty much all day long. After a few weeks, we would hear her saying something like this herself. I like the “Worry Hill” book, only in its explanation of anxiety and about how it has a natural peak, if you can wait it out. Once you learn about this, you can literally watch the peak coming and then see the downhill move towards more peace. Our daughter peaked at about 15 minutes, if we did not throw fuel on the fire and if she did not do constant compulsions.

 

Her next exacerbation was at age 6, and this no longer worked for her. She knew it was her brain, and it made her really mad to be told that it was not. We spent a lot of time educating her about OCD and how it was a part of her brain, but was a part that was not working quite right & that she could use another part of her brain to get to do what she wanted to do. We called it courage work, and agreed that she would be in control of the speed. We slowly learned how to break any task down into tiny tiny pieces so that there was some part of any task that could be tried without severe anxiety. This was very effective for physical compulsions, but once we got into mental thoughts accompanied by mental rituals, it became much harder. In many ways, the actual thought was not important. This should be helpful to you, since you likely won’t know her exact fear. At this point, I would treat it like an intrusive thought, with a physical compulsion – since you have both avoidance and fixation, both of which are “physical” compulsions.

 

I generally found the easiest thing to do is to make a list of tasks which are related to the obsession first, and try seeing how high these are on her hierarchy. With a verbal child, you can ask them to rank them – this will be more difficult for you as you’ll have to gauge her reaction to the tasks as your ranking. So I would be more cautious about going very slowly and introducing tiny steps for each stage. I assume the elevator fear is the primary one? And it seems like she wants to work on this as well? Some simple steps are:

• to look at pictures of elevators

• Read stories (you may have to write them!) that include information about elevators

• Build yourself an elevator at home, out of 2 refrigerator boxes. Include the exterior buttons, interior buttons, etc.

• Make the sliding doors out of cardboard and get someone to help you glide them open & closed as you push her through them.

• Sing songs about elevators.

• Start with only friendly stories, pictures and songs – later, you can use your judgment as to whether you should introduce very simple concepts that may be frightening her. I usually am surprised at how “minor” the scary things are, and am careful not to introduce higher level frightening things. This may be hard to judge for her, so I would start very low and see if that handles the issue. For example, I would just start by assuming she is scared of the doors, or of the small space – vs. scared she’ll be crushed or that the elevator will fall. She may not even know that is possible (although very unlikely!!!)

• Write an elevator song. I have posted about this before – one of our (many) intrusive thoughts was about a robber being somewhere in the house (apparently he was very small, because he could even fit in drawers ). We would sing a song about it, to the tune of “hi ho the derrio”. It went like this (yes, I know, I should write music – hold the compliments please!!!) “There’s a robber in the house, there’s a robber in the house, hi ho the derrio, there’s a robber in the house.” We would sing this verse a few times, then change it to each room of the house “there’s a robber in the bedroom, there’s a robber in the bedroom….” And so on. We would add verses in between, such as “I don’t have to be scared of robbers, I don’t have to be scared of robbers, hi ho the derrio, there’s a robber in the house”. Or we might say “stupid OCD wants me to worry, stupid OCD wants me to worry, hi ho the derrio, stupid OCD is a meany”. Something about the simple familiar tune and the repetition of the worry was very helpful. Again, after about 15 minutes, the anxiety would die down & this would become boring. This is very similar to what is called “loop therapy” for teens and adults, where they write their fear down, record it & then listen to it over and over again, until they are bored with it. We never did loop therapy, we always used tools like reading it together, or singing – more appropriate for her age.

 

There is also a question of just being able to get her past an elevator. The above may help with this, but you may also need a time/distance tool for her. We found these types of tools helpful for a young child who could not understand time and parameters. So if we were trying to move her past something, we would use tools like music, color, drawing and reading. So for example, we might use a fairly short (but very familiar) song to explain time. “When this song is over, we are going to move to the doorway”. This allowed her to prepare for the movement herself – and it changed the ritual, which is the entire concept of ERP. Or we might lay out 8 of those colored play mats that link together to show distance. You can do this two ways – to avoid the elevator, you can have something like this on the ground, and tell her a story about how you will go around those mats and it will be fine. Or you can use this to slowly inch closer to the elevator over time. You may start on the red square (always put in the same order) and then discuss moving to the edge of the red, or moving into the yellow square. We do not have experience with an autistic child, so finding someone that can adapt communication tools to OCD work might be helpful. We did tap into the autistic community when our daughter was ill at 3 & 6, as they seemed to be closer to understanding our issues than anyone else. We learned a ton from those parents and from our OT therapist.

 

I think you have posted before on social stories? I like these a lot – in this situation, I might set up a plan for about 3 months. Each week, try writing a new social story for the step that you think she is ready to take, using a tool for communication, and a reward program. Read her this story 4-5 times a day for a few days before trying that step. Then repeat that step for 3-4 days until it seems boring to her. That was always the sign for our child – boredom with a step meant we could move on to the next one. You may want to have these social stories use a different child at first – if she finds even pictures or stories about elevators scary. But if not, most kids like to hear their own names in a book. Obviously, don’t make the social story about a step that she is not ready for – keep it focused on the step that she is about to take.

 

Ok, so I spent all my time on the elevators. On the objects that she fixates to, my best guess is that there is an obsession attached to them, that you will never truly know. I’ll give a voice to Allie for a second – which will likely be wrong – and in many ways, it does not matter what she is thinking. We’ll just deal with the compulsion, and it will heal the obsession. But so you can have something to think, here are some examples for what she might be thinking – remember that we ALL try to bring meaning to our feelings. “If I hold on tight enough to this doll, then my stomach will not hurt”. “If I let go of this toy, then my mom will fall and get hurt”. “If I can keep everyone from touching this doll, then I will not be yelled at in school”. “If I let anyone take this doll away from me, then I will die”. “If I lose this doll, then the refrigerator will fall on my head”. You can see where these would all be urgent enough to make her refuse to let you have them! So the approach is to deal with the physical compulsion (to hold the toy) with ERP. Again, for Allie, I would likely tell a social story, in which you have another child have the doll, and be scared to let anyone touch it. Then you would come up with your list of baby steps, and build those into each weeks social story. Here are examples that she could do, that should help to break the cycle of OCD that she feels about the specific object. Once you have done 1 object, then you can use that one to teach about future ones. (However, I will give you minor warning not to expect too much - our daughter had over 50 things she could not touch in her room at one point. For the first 15-20 items, there was no learning that translated into the next item. We had to approach them one by one. However, around the 20th item, she broke though, had me put them all in a pile, and dove headfirst into them.)

 

Ways to have a child do ERP for toy that they are obsessed about: have them release the toy onto a plate for 5 seconds, then 10, then 20, then 60, then 2 minutes, etc – no one else touches it. Then have them put on a plate, and move away from it, for 5 seconds, 10, 1 min, 2, etc. Then have them put on a plate & go into another room for 5 sec, 10, 2 min, etc. Then have someone safe be allowed to touch it with one pinkie for 5, 10, etc. Then with their whole hand. Then have that person take the toy into another room for a few seconds at a time, returning it to her each time. You are essentially training her brain that nothing bad will happen. You then reward her for each tiny step (even the 5 seconds) with a hug, praise, m&m’s – whatever works. Each time, remind her of her prior success. Repeat success steps multiple time before moving on to the next step. There are a hundred creative ways to do this. Hide it under a bowl. Play hide & seek with 4 bowls. Have the one toy do a play date with another toy.

 

Generally, for parents (and obviously, you have the best experience about this in all your work with Allie), the question shouldn’t be “how do I fix this situation”, but instead, “how do I take the first tiny step with my child”. Each of these steps may require the courage of a lion, but each step is a move in the right direction.

[peglem]

Meg's mom, That was amazing! And yes, knowing how to take the 1st step...knowing where to start, that's the difficulty here. I actually think this fear stems from safety training at school- in case of fire do not use the elevator. I'm not sure if she thinks using the elevator will start a fire or if she's afraid one will start while she's on it and she will not be able to get off... It was easier to deal with the elevator when she would just avoid them.

I'll start with stories and songs.

[Megs_Mom]

That would make sense. It's amazing how a simple safety message can be twisted by OCD. I don't think that the actual fear will matter very much as you take each step - it will be just as scary for her if it is fire or throwing up. All that will matter is that she takes the step forward.

 

I am especially interested in Allie - as I think that being unable to communicate about OCD must be beyond frustrating for her. There was a mom that spoke at last year's OCD conference. She is a writer, and she spoke about her son, who I believe has a pretty severe disease (I forget which one) - he is wheelchair bound, has to use a communication device, full time care, etc. I remember thinking, God, she must think we are all whiners, this seems so much worse. But her son got OCD. And she told us that of all his ailments - he felt that OCD was the worst. That having his mind not work right was far worse than any bodily ailment. That spoke volumes to me, and made me weep. It helped me understand how serious this really was.

 

The World Health Organization lists OCD as one of the top 10 most disabiling diseases (including physical diseases). On the one hand, that is hard to hear. On the other hand, it helps to think that Allie may largely be trapped by OCD. Whether she has underlying autism or not, simply helping on the OCD front through the medical interventions you are already finding for her - and therapy, may be the biggest help to her.

 

You are a one of my hero moms - most of whom I have met through this site, or through the OCD conference. Hoping for all the best for Allie.

[cab40]

Yes you are all hero moms!!

Edited March 23, 2012 by cab40

[LNN]

Cab-

You may want to search on old posts using the term "CBT" or "Cognitive behavior Therapy". Your son's reaction to the movie could be OCD but it sounds more like general anxiety. Your son needs tools to help him fight back and those who care for him need a new frame of reference for what's going on. He obviously isn't acting this way "on purpose" as though he has control over it. And that's very hard for people without anxiety to understand. Usually they reach an end of their patience and start to convey a "Dude, Man Up" attitude, which only makes things worse.

 

I highly recommend the book "What to Do When You Worry Too Much" as a starting point. And "Freeing Your Child From Anxiety" for the adults who care for him. The first step of CBT, like ERP, is to name the fears. Make it a 3rd party. Ours was called Warren the Worrier. It's a way to make your son realize that the anxiety isn't an inseparable part of himself. It can be fought and conquered.

 

The next step is to catch the Worry Guy and realize that the building anxiety is a trick - a way for the Worry Guy to steal energy. Reward your son every time he realizes that it's the Worry Guy trying to control him. Catching him diminishes the anxiety.

 

After that, you work on proving to your son that he is the boss. That Worry Guy has to listen to him. And that no adult can do this for him. That only teaches Worry guy to listen to you and that your son is weak. Your son has to be the one who becomes empowered. You can't "rescue" him. But you can coach him. A good book for helping you shift your mind set is "Talking Back to OCD" - even if it's anxiety and not OCD per se, I found the book to be a big help in changing the way I looked at my own role.

 

Along the way, you give your son tools - like deep breathing he can do in any situation, a few scripts or mantra he can use that build his confidence, funny songs as Meg's Mom suggested - for example, when my daughter has to get a blood draw, we sing the "I'm So Brave" song to the tune of Jingle Bells. "I'm so brave, I'm so brave, I'm so very Brave. The blood draw fairy has a fat butt and I'm gonna make her maa-ad." Sometimes, it's entertaining enough to distract my daughter and give her the courage to stick her arm out for the draw. You celebrate at every attempt to fight the anxiety - even failed attempts. The key is to try to fight back, even a little bit. because by trying, eventually your son will learn to succeed.

 

The single most important thing is to get your son to talk about his fears. Fears grow when they're fed and kept inside. By talking about them, you take away some of the mystique and power. You shouldn't try to argue the fears away, like "Oh, that's just not going to happen." Instead, you talk about what if - what if something bad did happen. What would you do? Having a coping plan for a "disaster" - no matter how improbable - can help a great deal.

 

You can also look for a therapist trained in CBT but I found the books most helpful in helping me develop plans and a dialogue.

[dcmom]

Cab- I agree with LLM. The book "What to do when your brain gets stuck" was very valuable to us.

 

But, to the bigger picture:

 

I do not know your son's story, but, I found it very important to have a psychologist on board to help us with the ocd. If/when my children could not go to the psych, then I went. It is hard, lonely and scary for the child, and the mom- it is so helpful to have someone in your corner. I assume he knows he has pandas and ocd. A good place to start is by talking to him. Tell him you know he always behaves well, and that this is out of character. Tell him you understand it is the ocd, and you can help him, with the psych, to work on it.

 

I think initially, since it seems his issues have worsened/ changed, it is good to take a step back. Will he discuss things with you that bother him? IMHO it is important to keep him out of situations that will cause major ocd like this, without support.

 

Oy- this is all so hard. Don't despair- we have all been there- things will get better.

 

Also, we have found that addressing the medical cause of the ocd to be the most helpful tool we have. I assume you have a pandas doc helping you with this?

[peglem]

Bringing back this ancient post to say that this evening my Allie opened an elevator and actually stepped in with both feet. She stayed near the door and we didn't "ride it" or even close the door, but all this time we've been working on this...it was a major break through. Before tonight we could not even get her close enough to touch the darn call button.

 

Last week on spring break, I finally figured out how to get "friendly" elevator videos on youtube. (instead of searching "elevator", which brings up a lot of scary stuff, search "how to use an elevator" for instructional videos) She spent a lot of time on those vids and she was checking out/confirming info from those vids tonight.

 

She did start the experience tonight w/ a bit of anxiety, I didn't push her. Every time I suggested we leave, she'd do more, get closer...the entire process took about an hour. Boy, what a rush. By the time we finally left the elevator, there was no anxiety! Hoping to repeat the experience soon!

[DeterminedMomVA]

That is so great! Congratulations to Allie for appearing to conquer this one!

 

And thank you for reviving this thread. The information, insights,and strategies in it are great, and I hadn't seen it at all. DS confessed to us last night that for months he's had a fear that robbers are in the house or are going to break into the house at night and kill us all, so having the chance to read the advice in here is really great as we figure out how to help him figure out how to that face that fear.

[peglem]

Yes, when I re-read this thread last night I was reminded what a genius Meg's Mom is!

[mkur]

That's awesome. You sure have been busy this month (or week?). Best Wishes.

[peglem]

That's awesome. You sure have been busy this month (or week?). Best Wishes.

I KNOW! Also had my b-day, wedding anniversary (and new grandbaby) all during Allie's spring break!

Also, hub lost his job this week- eek!

Allie's 1 on 1 and her speech therapist from school took her to an elevator today (those 2 have been an amazing help!). She was a little hesitant, but totally opened and walked in the elevator herself, with no coaxing. What an amazing time! I wonder how long it will take her to decide to go up and down?

Edited March 28, 2012 by peglem