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.)