New behaviors escalating. What is this one?

[tantrums]

My DS just isn't doing as well as I'd hoped. We are seeing an overall increase in most areas and some new behaviors all together. I'm starting to seriously look into IVIG and am going to ask about trying the steroid burst.

 

But this one in particular has me perplexed... He will suddenly "need" to go somewhere. He can be swimming in the neighbors pool with his friends (his favorite activity) - suddenly get out, run home and announce "I want you to take me to the pet store for a new fish" or "I need to go to the toy store". Of course, any normal response - busy now, don't feel like going out, don't need another fish, etc... gets met with a rage. Even if it is something I had said initially we could do later or the next day, he escalates so quickly and so badly that NO I cannot (being somewhat rational here) take my child for a reward So the answer 95% of the tiime ends up being no - and ends up in a rage. And then he will start over the next day. "will you take me today?" "will you take me later if I'm very good?" "why won't you ever take me??!!!" BAM!

 

He told me two days ago that he wants balloons and I'm just cringing. I did go to the food store yesterday and no balloons. He got testy and told me "I TOLD you they don't have balloons there! When are you going to get them?" Didn't escalate, but if I don't come home with balloons today or agree to take him to get them - I'm facing another rage. Now I don't want to get them bc I cannot be ruled by a 7 year old. And when he gets the balloons, we will be back on getting another fish

 

What IS this? Is it an OCD behavior that he suddenly decides he NEEDS to do something so complex? Any advice on how to handle this one? I am SOOOO hoping it morphs into something else and SOON!

[peglem]

My daughter does a sort of version of this. 2 years ago,, we could not take her anywhere- her fear was so great. So, once, she began being able to go to stores (dollar store, walgreen's, target) we were delighted and took her frequently...but its turned into a bit of an obsession and she is constantly "checking" when is the next time she can go to the store and frequently refuses to do things unless there is a trip to the store involved- kind of a reverse ABA! Then, too she has things in each store that she obsesses over- balloons, OMG!!!, flashlights, dvd's. We've made Fridays "store day" and she usually has to wait. But, we've been trying to expand the list of places she can/will go, but going anywhere else usually results in a meltdown if a store trip isn't included.

[dcmom]

We definitely had this type of thing with my older pandas dd.

 

It is pandas- it got better as she got better. Try staying calm, and use smartyjones's technique of repeating. It sounds silly but it does help diffuse the situation:

 

I want ballons!

 

repeat: You want balloons? I am sorry, we can't do that now.

 

I need balloons! You are so mean!

 

repeat: You need balloons? I am mean?

 

on and on

 

We find after three repeats, she fizzled down and goes away (but that depends on how he is doing) AND it helps the parent not to get drawn in and agitated- which can worsen the whole thing. Works great for DH too- still use it sometimes- is a great technique for life...

 

Give it a try and hang in there!

[tantrums]

So does "store day" seem to appease at least a lot of the time? He almost seems desperate to go anywhere. If he figures he's NOT going to a store, then it's "take me to a restaurant". And it's not like we are never out of the house either. Other times, when he isn't focused on some particular thing, he will refuse to go with one of us - we always ask him to go wherever we are going.

 

I hate balloons! I was a spaz about him having any latex balloons when he was younger bc of the choking risk. He still makes me nervous. I've seen him biting them But typically he just wants me to blow them up so he can pop them.

[tantrums]

I should add... I have to work on my DH! He frequently will come in and start yelling as DS is getting agitated and I KNOW it's only making it worse. I may have to start breaking that cardinal rule of "never contradict each other in front of the child." Last week - DH told him he had to sit in time out on the step. DS started running downstairs. DH would NOT let him go. He only goes downstairs bc it is quiet and dark down there - I've seen him use it as a personal time out. I said let it go and let him calm himself down. DH wouldn't budge. That whole incident might've been a lot shorter if DH didn't get into a power play with him.

 

So... do I go get balloons today or no?

[dcmom]

Give yourself a break- get the balloons. But then at a quiet time have a talk about him needing to stay calm- give him suggestions like go to his room and count to 50 or whatever.

 

Get your husband on board- suggest the repeating. My dh is same as yours- the repeating gives him a script and helps him stay calm which really helps.

 

Start the day with telling him what the plan is- so there are no surprises. If he then says I want to go here- tell him it is not in the plan right now- but we can look at doing that later in the week (if you can do it then).

 

It is a lot of managing for you and dh.

[peglem]

So does "store day" seem to appease at least a lot of the time? He almost seems desperate to go anywhere. If he figures he's NOT going to a store, then it's "take me to a restaurant". And it's not like we are never out of the house either. Other times, when he isn't focused on some particular thing, he will refuse to go with one of us - we always ask him to go wherever we are going.

 

I hate balloons! I was a spaz about him having any latex balloons when he was younger bc of the choking risk. He still makes me nervous. I've seen him biting them But typically he just wants me to blow them up so he can pop them.

 

"Store day" does help. When she checks we just say, "We go to the store on Friday." or "Friday is store day." She'll come back to it several more times, sometimes gets upset, but we stick by it- can't afford all those store trips! My daughter really has a problem w/ fixating on the helium balloons, and there have been times when our house looked like a sea of jellyfish w/ all those strings hanging down from balloons floating on the ceiling. (They last about 3 weeks) We've had to limit # of balloons before the trip and one of the reasons we prefer going to Target is that they don't have helium balloons. She likes the latex ones, too, but usually wants to draw on them or have us draw on them for her- that goes in phases, but its also an obsessive thing.

[tantrums]

WOW! Do we have the same kid or what? Mine also wants to draw on the balloons if he isn't popping them. One of his biggest obsessions is drawing and I can often tell by how he is doing with that, does he do the same one over and over, make US draw it bc he thinks his isn't good enough, have to cover the whole wall in his room with paper, etc... It's always an indicator for me as to when things are going south. Sleeping with his crayons now... Yep, we're nearing the south pole at this point!

 

I am going to get the balloons today. I think it IS best since he hasn't yet had a rage over it. He has been asking fairly nicely so it's not like I'd be rewarding him if I wait until he DOES rage and then end up getting them.

 

I am going to discuss "store day" with him. I think he does usually respond best when he knows what to expect. Wish he'd do the same for me!!! I feel like I never know what's coming at me anymore

 

I do also need to really sit and discuss this with DH. The repeating does work in this situation. I said before I wasn't impressed by the book, but I do realize there are some good suggestions there. DH will likely to better with a script.

 

We did start family counseling as well - just have to get DH to actually go with us at some point But I realize I'm doing things wrong too. Having a really hard time figuring where to draw that line between behavior and stuff he just cannot control.

 

DH HAS come a long way I should say. He has accepted the diagnosis, which he argued and hasn't complained about the constant stream of money going out for uncovered medical expenses, which would've been HUGE for him in the past. Maybe I can encourage him to take some of my ativan in emeregency

[peglem]

We're to the point now, where some things I just insist on, knowing we'll probably get a meltdown. The exorcist-type rages are mostly gone and a meltdown actually gives us the opportunity to help her practice self regulation and develop strategies for dealing with it. Yes, I'm a glass half-full person! We spent so many years tip-toeing around, in "don't wake the monster" mode, its real progress that the monster is beginning to get tamed.

[norcalmom]

My son is simialar, but different. Its like he has the first part of OCD, but not a fully developed rituatal around it, combined with inflexibility in his thinking - he gets stuck on something he wants and will badger the heck out of us until he gets it, or melts down. Silly stuff. And he cannot accept a rational answer. He will try to get us to commit to things even if they are a year from now - he'll start with "later" work to "tomorrow" then its "when I'm 12" etc...I dunno what it is. We just thought he was a tough negotiator and would become a lawyer when he was younger and do this - but it has taken on a life of its own and now involves the melt downs and irrationality. Its maddening.

 

I try to just answer him (uaually I will answer once or twice), and after that I keep telling him that I already answered him, not matter how many different ways he trys to come at the same question. Usually I try to accomodate the request, to avoid the melt down, but I always have to think very carefully about everything before I answer him, becasue god forbid, if I say yes to somehting and then for some reason we can't do it, all $%^ breaks loose. If I cannot commit to somehting because I can't predict our day, I will tell him he can ask me again at (whatever time) I will have a better idea of knowing. If he keeps beadgering before that time, soemtimes I will give a consequence or tell him the answer right now is no.

 

I feel a little bit of is like OCD control - my son involves me in his OCD - its like a control thing - and this is similar, but less defined than what his other behaviors are.

[Megs_Mom]

This is a really hard one, as there could be a lot of things going on his head, OCD or otherwise (you'll read a lot about the term perseverance on this forum & on autism forums). When he is NOT mad about something, I suggest asking him why it made him so mad, why had had to have it right that second, etc. If it's OCD, he either feels like "something bad (he may say what) will happen if he does not get it" or he just feels "wrong" if you don't leave that second.

 

But really, this sounds less like OCD, and more like a trait that is very faintly on the autism spectrum, of simply wanting something so completely, that any answer other than Yes, and immediate action, will send them into a rage. Do you take him to an OT? If so, explain the behavior to them, and let them help you develop a plan for this that you can communicate to your son ahead of time. A lot of times, they can deflect one frustration into another. So you may have to work with him for 2-3 weeks, but it is likely that he can be taught what the feeling is that he is having, and what will be acceptable and unacceptable ways of handling it. Often when a child gets PANDAS, we are not used to the childs new behaviors - so instead of having since birth to find ways to cope, we are thrown into situations that make us feel a little panicky as well. If you were dealing with a 3 year old with age appropriate tantrums, you would simply say no, give a consequence if he continues and that would solve it. But we are given kids that should already have those tools & suddenly lose them. I felt that we had to regress in both age and technique - like she learned differently. I also think that she lost a lot of things that she knew before - kind of like a stroke victim. But she could learn new techniques with a lot of repitition, and then once the exacerbation was over, she got it all back again. I love the Explosive Child techniques for this.

 

For perspective, I would say that we were a 7.5-8 on a severity scale from this forum. So really bad, non-functional, but could learn some and do basics. Not as bad as some here. I should add that we did some form of therapy nearly all day. I spent my nights planning every half hour of the following day, what we were going to try to process from the day before, how we were going to help her, etc. We tried to anticipate issues as much as possible - so things like the above "shopping day" or having treats on hand, and offering before a fit (reward before she could escalate). We were very blessed that I could take a lot of time off work, and she does not have siblings, so that made our job a good bit easier.