Tuesday, April 08, 2008

Frustrations

Currently, I am functioning under the assumption that Scooter will eventually end up with a diagnosis of Asperger's Syndrome (and that I would too if I decided to get evaluated). With each new thing I read, I find that more pieces click into place: explanations of behavior, connections of seemingly disparate characteristics, the sense that someone understands us.

But I also recognize that there remain many frustrations in dealing with my son. He is prone to meltdowns, sometimes with no specific warning. He has recently learned to assert that he is right and the other person is wrong and will defend his position ad nauseam; to his credit, when faced with incontrovertible proof, he will respond, "Oh, I guess I was wrong." He is very rigid about routines and how things are supposed to be done. He gets stuck on tiny details, is repetitive in his play, can say the same or phrase without end.

These, however, are not the particular frustrations that are niggling at me tonight.

It doesn't take a particularly keen observer to note Scooter's devotion to routine and repetitive behaviors. And so when I remark on his love of pretend play and his imagination, I tend to get a look of surprise or disbelief (or the obvious attempt to hide such a reaction). Perhaps they think I'm delusional. But I've seen it pointed out in several things I've read that the "lack of imagination" that is a characteristic of Asperger's is not a lack of creative thought, rather it's a difficulty in imagining the everyday and expected differently. In my experience, this means that Scooter can spend hours making up new events on the Island of Sodor or come up with an unusual solution to a practical problem, but he will likely go into meltdown mode if we suggest that we'll have to go to the library at a different time than planned or wait until the bread is done baking to have the grilled cheese sandwich he is used to having for lunch.

The most frustrating issue by far has been dealing with the meltdowns or, rather, other people's reactions to his meltdowns. Trillian and I are accustomed to the fact that they can happen suddenly, apparently without warning. But it's quite clear to us that it's not usually a single thing that sets Scooter off; he's quite clearly more prone to them when he's not feeling well or is in a new situation. The best thing to do is to get him into a quiet corner and let him take the time he needs to calm down; sometimes he likes a little hugging or back patting, but trying to talk to him about what happened right at the beginning of a meltdown will only prolong it. At his previous daycare, they had him go sit on a bench for a while, and he even got to the point where he would proclaim, "I need to sit the bench." In general, the frequency of his meltdowns has decreased and often last only a few minutes.

This frustration is particularly keen tonight, however, because we have to go in for a meeting with his teacher tomorrow. She wants to "strategize" how to deal with his meltdowns. My frustration is particularly keen, because I have discussed this twice with the teacher, Trillian once, and we have both told her that separation and time are the only two things that have ever worked. On the phone with Trillian today, she brought out a version of that old teacher chestnut (and I've certainly been guilty of this too): "But in kindergarten, with only one teacher and twenty kids, he just can't do this."

I am frustrated even more so because this is a teacher, of children with documented developmental delays, who has now been to multiple training sessions on autism, who is supposedly learning to identify students likely on the spectrum, to be a resource for the school on autism. And meltdowns (which are not exactly tantrums) are classic autism; Scooter's meltdowns are particularly characteristic of Asperger's. And what I found in the quickest of searches (and in a very affirming email from Aliki) was a consistent message that it is pretty much impossible for these kids not to have meltdowns, that the best ways of handling them include removing the triggers and waiting until they've passed to address them, that most kids need to be at least 7 or 8 before they can start to control the beginning of a meltdown.

Tomorrow morning, as calmly as I can manage, I will tell Scooter's teacher about the bench and how he learned to recognize when he needed that separation (which was a huge amount of awareness for a 4-year-old). This is, in essence, what we have already told her, but I hope that a concrete example might satisfy her. Maybe I can even point to a place in her room that could function in this capacity.

(Perhaps the irony in this is that I recognize what is my adult version of a meltdown in this frustration, the swirl of strong emotions and the way they wreck my concentration. No longer the unbridled weeping, it's a restlessness and a simmering anger. A meltdown over meltdowns.)

6 comments:

Bea said...

Oh, yes. When I went to pick Bub up from nursery school two days ago he was crying so hard I assumed he must have broken his wrist. No - he was crying because the teachers had made him put on his spring coat.

The transition from winter to spring outerwear is always fraught with conflict, but I was taken aback by just how entrenched his resistance to change was until I realized that two triggers were at work here: his resistance to change and his need to control his body and actions. He doesn't often need to control his external environment, but he does feel an intense urge to do only self-initiated actions. So putting on his spring coat was like the perfect storm of wrongness for him.

Still, I make a distinction between those kind of goal-oriented meltdowns and the kind that emerge from a sense of shame (like when he is rebuked by an adult he doesn't know well, an experience that always causes him intense and awful despair). If he's melting down because he's feeling sad or embarrassed, I rush to comfort him, while if he's melting down in order to avoid doing something he doesn't want to do, I find the shortest way out is through - after that one major protest, he has accepted his spring coat without a murmur.

I don't find that his nursery school teacher really accepts this distinction: to her, the crying is all goal-oriented, which is not to say that he can control it, but at least that it arises from things that he wants and isn't getting. I just kind of put up with the fact that she very clearly thinks that I live in fear of and thus coddle the tantrums.

So yes. I get it.

Mouse said...

This teacher has also grabbed onto the fact that Scooter is an only child and therefore being "a spoiled only" is the cause of problems like difficulty sharing. Never mind that he's been in daycare since he was 18-months-old and that being territorial over toys and such is another common trait in Asperger's.

And it's a whole extra category of frustration when people want to dismiss his meltdowns as common tantrums ("like most preschoolers have").

You're also right, Bea, in that there are subtle differences in the types of meltdowns and sometimes touch will help calm him down and sometimes it sparks another level of meltdown--I haven't quite broken them down like you have, but can generally judge the situation to figure out what's called for.

Lisa b said...

I hope the meeting went well.
Your plan to meet his needs seems pretty clear to me. If she cannot deal with this she shouldn't be working in the school so I hope she steps up.

Aliki2006 said...

I think you're really right to point out the difference between tantrums and meltdowns. It's funny in a dry, ironic way, too, how so many people shrugged off L.'s terrible meltdowns when he was younger but as soon as he hit four it just wasn't funny/acceptable for him to be having meltdowns in public. Nothing sends people scurrying away when a five, or six, or seven-year old has a meltdown in public.

Good luck at the meeting...

Mouse said...

The meeting was decent, though it also became clear that there are some things we won't sway her on. She really believes that he's a "spoiled only child." She did have her notebook from autism training out, open to the section on meltdowns. The most important point in that list (all caps and in bold) was to "stop talking." Of course, she gave an example of 3 or 4 sentences she'd say before letting him go to the quiet spot--she can't just STOP TALKING.

On the plus side, I think she realized in recounting some incidents to us that they need to follow what we know works for him better. He's had meltdowns over things like being in the middle of playing and then being told it's his turn to do table work; they're going to try either to have him do his table work first so it doesn't interrupt what he wants to do or to tell him when the kid before him is going ("After Johnny finishes, it's your turn) so he'll have adequate warning.

She seemed a bit tentative when suggesting that maybe he'll need more than the current hour a week of services he has (OT) for kindergarten. Trillian and I are perfectly fine with him having an occasional shadow to help him through transitions. In fact, my biggest concerns for kindergarten are working on general "school skills"; he'd probably be fine not doing a lick of academics.

Lisa b said...

hey that seems like good news.
I find it odd too when people are tentative about suggesting services. Sign me up!