Red Brownie Box, Begone

Charlie in the back seat of the white car on the way to the beach in late February  At the risk of sounding really really boring……

Too many days off from school increases anxiety in Charlie (and his parents), due to his sense of order being rendered very disordered.

An increase in anxiety in Charlie leads to an increase in his OCD behaviors, as these derive from his own attempts to maintain some sense of security and understanding about the world around him.

An increase in OCD behaviors has been shown to foment a neurological storm, as if (I'm speculating here) Charlie has had too much of his own orderings and is sick (ad nauseam) and tired of it, but doesn't know how else to proceed or to get out of said behaviors.

On the other hand, our trying to move him beyond or through or out of an OCD box can lead to severe cognitive dissonance in Charlie, a known prelude to head-banging.

Saturday after a fine trip to the beach Charlie and I went to the grocery store. We've gone several times, as in way too many times this week, all to fill in the time during the snow days. (Yes, I'm getting pretty nervous about Spring Break already, planning ahead as much as one can.) On Wednesday we were successful at going through the store without buying brownie mix. I'd been on guard about not getting that certain red box every single time we go to the store as Charlie's increasingly dogged insistence on getting the brownie mix, and his almost total disinterest in eating the brownies once made, have been a harbinger that this whole brownie business had gone from being a fun activity to a ritual in which, if everything isn;t done just the right way, expect major unhappiness.

As you may have figured out from this build-up, the promise of sprinkles that resolved the issue on Wednesday (when Charlie had had three full days of school and was looking forward to another two days, which were not to occur thanks to Mother Nature overworking the snow machine) did not work at all on late Saturday afternoon. After I'd quietly shook my head to getting that red box (as we'd gotten it on Friday) everything went into slow motion with Charlie freezing and his face looking flat and troubled and then, storm and an immediate need in Charlie for deep pressure on his forehead and his mouth, and to knock several items (all paper packages, I felt very lucky) off the shelves.

(These, along with the way his face seems to lose affect are reasons that we and the neurologist continue to wonder about seizures or some sort of seizure activity in Charlie.  Definitely got to reschedule that cancelled appointment.)

I got Charlie out to the parking lot and into the car without much else happening, but it took him a while to settle in the car. 

Obviously stores are becoming increasingly, if not downright, difficult for Charlie to visit. How can we try to make it possible for Charlie to be able to go out to some places, even as we cross others off our list?

When Jim got home—he'd gone to see his mother in the nursing home—he and I talked about needing to keep changing up what Charlie does, including what he eats. I really don't think Charlie gets too much pleasure these days out of going into any stores, though he's done well grocery shopping with his school: They give him a shopping list (with photos and words of the items) and he finds them. I'd like to adapt this same strategy, but think it'll be a while before we attempt grocery stores again. The fluorescent lights and the shelves of choices and colors and the music coming from the speakers: Charlie is sensitive to everything and he probably can't help reverting into OCD mode when faced with too many stimuli.  

Maybe you're wondering, if we know what sets up a said neurological storm, how come it keeps happening?

Not great but honest answer: Charlie's not a robot. Being a human being, he keeps changing. Lots of that changing is good and about him growing up. But it's really hard for him to get himself out of established and ordered ways of doing things (isn't it for all of us?) and sometimes the only way we all know the old order is so over, is when it's really really over.

But he does need us to help him move on and out of the OCD boxes that accumulate around him. It's an old thing with us that, after tough times, we ask Charlie to do something new, a bit challenging. Even a tiny bit of progress can make it all feel better. One of the problems with grocery store shopping is that Charlie has tended to want to get fewer and fewer items beyond the ones connected with whatever rituals are running through his head, and also to limit his food choices extremely. Maybe he'd like to try spaghetti with red sauce, but something in him just won't let him, and then he's stuck eating the same things that he's already tired of and doesn't feel like eating, and he's still hungry to boot.

Yesterday I figured Charlie had to be hungry after not eating since lunchtime and walking around at the beach. Safely back home, he helped himself to some crackers and, without wheedling or verbally insisting in Annoying Mom mode, I gave him a piece of a new food, a fishstick. Charlie choked it down without chewing and told me "no chicken" and I assented. A few minutes later I put a bowl of grapes out and offered him a few, and also the nong, crunchy crust from the bottom of the rice pot (a sometimes favorite), then walked away across the room.

Several minutes later, Charlie walked into the kitchen and put the box of crackers on the counter. I walked back over and saw that the bowl of grapes was empty and the nong half-eaten. Charlie asked for a pre-bedtime walk, put on his shoes and jacket and coat and gloves, and raced ahead amid the snow mounds, Jim happily hurrying to catch up.

"He doesn't want to be babied," Jim said to me later. As in, it's our sense that Charlie doesn't want to be caught in the obsessive routines he locks himself into and that he can't get himself out of; doesn't want to have to let a red box of brownie mix control his life. I don't know if there's any easy way to pull him out of that OCD box without kicking and screaming (figural and literal) but hard as it is, we're going to keep at it, red boxes of brownie mix notwithstanding.

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Comments
14 Responses to “Red Brownie Box, Begone”
  1. Jenn says:

    What about giving Charlie a shopping list when you do go a store?

  2. Raquel says:

    We went through something similar (orange juice) and were successful with OJ every Friday after school. he knew he would get it again and when but it wasn’t every time. Liki so many things, this phased out and morphed into something else.

  3. Rochelle says:

    I don’t comment frequently, but I really love your blog here… it inspires me to blog more every time I read it. 🙂
    Rochelle

  4. Rochelle says:

    I don’t comment frequently, but I really love your blog here… it inspires me to blog more every time I read it. 🙂
    Rochelle

  5. autismvox says:

    @Jenn,
    I think I’ll definitely try the list! but it’ll be some time before we attempt the store again, I guess.

  6. Callista says:

    Charlie really has my sympathy. I got kicked severely off kilter by the snow days this year, too. It’s no fun. Spring is coming; hang in there.

  7. Estee Klar says:

    We seem to be on the same journey, Kristina. We are having the same storms in our house.

  8. Rose says:

    Ben used to lay on the ground whenever we went into certain stores (Target) and the tut-tut of the clerks got me down.He still hates Wal-mart.
    He had such a limited diet for years it used to drive me crazy. French fries, chicken nuggets, McDonald’s hamburgers, ice cream. Anything else got picked at. I don’t know if this would help, but we broadened it by giving him high fat/salt/sugar goodies. It took years, but his diet has broadened considerably. He will at least try something new…he may leave 99% of it on his plate!
    If anyone is going to figure out Charlies needs, it will be you. That babied thing was sheer genious. I find myself nodding in agreement, thinking Ben is just like that! Kids are kids are kids!!!

  9. Rose says:

    Ben used to lay on the ground whenever we went into certain stores (Target) and the tut-tut of the clerks got me down.He still hates Wal-mart.
    He had such a limited diet for years it used to drive me crazy. French fries, chicken nuggets, McDonald’s hamburgers, ice cream. Anything else got picked at. I don’t know if this would help, but we broadened it by giving him high fat/salt/sugar goodies. It took years, but his diet has broadened considerably. He will at least try something new…he may leave 99% of it on his plate!
    If anyone is going to figure out Charlies needs, it will be you. That babied thing was sheer genious. I find myself nodding in agreement, thinking Ben is just like that! Kids are kids are kids!!!

  10. Sounds like Matt with his coloring book at Walgreens and Rite Aid. Always has to get one as soon as we enter the store. At home he stacks them so I got a bunch of them and put in a bag to donate and put elsewhere. Now he is colorig out of those books.

  11. Matt also has to grab a box of cheez its at the store. Before we headed out I showed him a box that was not opened in cabinet, so instead he chose Teddy Grahams and that was ok.

  12. Regina says:

    This is just our experience – My daughter got in a rut and for a while we used a little bit of premack principle- choose something new and then we’ll get the “old usual”. There’s all kind of dependencies in there, but it helped so there was some variety, but also the aspect of choice, and it helped to get some new things introduced, and eventually the no-longer-really old favorites were able to be left out on an intermittant basis.
    We also use a list now, both for the skill aspect, but also because it also became more difficult to shop without one. Our daughter would be “disappointed”, to put it mildly, when she expected that we were going to get something because we always got it, and then was told “no” or asked to put it back. Now she and I sit down with those photo ads from the newspaper and other pictures and work together on a list. Over time I added checking our cupboards, pantry and fridge, so that she helps me figure out what we “need” (I really know, but she enjoys doing it). I always ask her whether there’s anything she might want and that goes on the list too. We also note things on the list during the week that run out. It’s become kind of an enjoyable game for us and helped cut down on some of her disorientation on what we are shopping for. The work in progress is having her be in charge of the list at the store – getting the items and crossing off the list and we’re putting the toe in on fading more control on the actual composition. I have noted that the “have to get” aspect is still there somewhat, but the reaction knob has turned down, esp. if I can refer to the list -“let’s see, is that on our list?…what’s on our list”. A “surprise” at the end of shopping is still appreciated.

  13. autismvox says:

    Regina, I think you’ve give me a reason to stop tossing those circulars into the recycle bin…….

  14. Jill says:

    I feel sad for you and Jim and Charlie. Your world keeps getting smaller and smaller with walks in the city suspended for the duration as well as eat-in meals at restaurants and now it looks like supermarket trips are too much for Charlie, too.
    He clearly feels like something’s not right and his attempts to feel secure by imposing order are readily understandable. When I’m out of sorts I don’t feel like trying new things. All I want is the comfort of a big, soft chair, a cup of tea and a familiar book.
    We’re all like Charlie in many ways, but most of us can get relief by expressing what we’re feeling. Charlie is trying his hardest, but he can’t find the words to express whatever it is that’s troubling him.
    Have you talked to his neurologist about OCD medications? I agree from what you describe that he has something neurological troubling him. I hope things are better for you guys today.

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