Tuesday, November 22, 2011

Does Intentionality Matter?

I've been thinking a lot about what it means to be understood. As an ASD mom, I often feel like most people, even those who are supposed to be specialists, really have no idea what it's like to live with autism in your family. Friends, family members, and teachers all seem to be pretty good about listening to stories about life with Sky, but they often fail to extrapolate to apply what they are learning about autism when the s**t hits the fan. To be honest, sometimes even Ren and I fail to apply what we have learned since Sky's diagnosis. It can be pretty hard to keep a neutral voice and facial expressions when Sky having a massive meltdown about putting on his belt, for example.

Sky's high functionality is a double-edged sword. Since he is on target academically, our only real option (at least where we live now) seems to be a mainstream classroom. I know we are blessed to have a kid on the spectrum who can generally function in a regular classroom, but it is also feels like a curse. In a lot of ways, he only appears to be "normal." As his parents, Ren and I have figured out a lot of the idiosyncrasies that come with his ASD. The same cannot be said for his teachers, and unfortunately, since he is only with each teacher for a year, we spend most of that year explaining why Sky said or did whatever he said or did. Here are some recent examples of the challenges.


Today at pick up time:

Sky was wandering around the pick up area walking through each puddle while the classroom assistant followed him and verbally directed him to go back to the building and practice proceeding appropriately to the pick up spot. Since this was taking some time, I attempted to make small talk with his homeroom teacher who was standing nearby, "He often hyper-focuses on puddles." (Which is true. He tends to get obsessed by puddles and how they are like oceans to ants and how if you step in them to make ripples, it's a lot like creating an ant tsunami). She responded somewhat aggressively, "Right now, he seems more focused on ignoring Mrs. X" (not her real name, obviously).

Even if you know very little about kids with ASD, you know that they can tend to seem to slip into their own worlds. Granted, Sky can do this at inopportune moments, but it would have been nice for his teacher to entertain the idea that something less malicious was happening. Later, I asked Sky why he was ignoring Mrs. X and he emphatically told me he wasn't ignoring her. He heard everything she said. He just needed to test the puddles.

Upon pick up on a day when I taught late:

When I arrived, Mrs. Z (the woman in charge) said, "I'm so mad at your son"
"I can put up with a lot of things, but I just don't like it when kids are rude or disrespectful to adults."
Showing disrespect doesn't tend to be Sky's MO, so I prodded a little: "How was he rude?"
"He went out of his way to go to the other side of the gym to bounce his ball on the wall between two adults who were talking."
(She was so upset about this, you'd think he did something much worse.)
"Maybe he didn't notice them," I offered.
"It was obvious they were talking," she countered.
"You remember he's on the autism spectrum, right. Thing is, kids like him miss social cues. It probably didn't occur to him that they were talking."

She didn't seem to believe me, so to appease her, I told her I would talk to him. And I did. And, like I figured, he had no idea the two people were talking or why Mrs. Z was so short with him.

At school open house:

Upon seeing a classmate's one year-old brother, Sky proclaimed rather loudly, "I can beat him up." Then soft enough that no one could hear, "I'm super fast!" "Oh, you mean you can beat him, like in a race?" I corrected. Unfortunately, now all the other parents think he was threatening to throttle a toddler. (Go ahead, say it three times fast. You know you want to!)

In P.E. class:

Sky ran into two girls who were holding hands and knocked them down. Apparently he was trying to separate them, and when the P.E. teacher asked him why they shouldn't hold hands, he said, "Because you know what that leads to!" So now the P.E. and homeroom teacher seem to think he is using innuendo to refer to God only knows what. (Note: I practically LOL-ed when I realized they thought he was using innuendo. Fortunately, I managed to restrain myself.) I don't suppose it occurred to them to ask him what he meant. When I did, he said, "If all the girls hold hands, the boys will feel left out."


This kind of thing happens all. the. time. with Sky, and it really makes me wonder why it's so easy for people to misunderstand him but so hard for them to give him the benefit of the doubt. We can and should continue to correct Sky and his miscued behaviors by reminding him what is appropriate in any given situation, but assigning ill-intent to his actions probably isn't going to help. Still, this has led me to wonder: does intentionality matter? And if it does, how do we help his teachers better read his intentions?


FMBMC said...

Sky is a sweet boy. I do wish people would give him the benefit of the doubt. I think a lot of adults assign adult behavior to kids without realizing kids DON'T have the same intentions as adults. Especially hard for ASD kids.

Karen said...

I feel your pain, explaining every year to teachers how things work is frustrating. Does pointing to his IEP (or 504 plan) help? It doesn't mean you don't have to explain, but it carries more weight than what "mom says." Is your principal more supportive than the classroom teacher? Maybe they can offer the teacher better support? Maybe you should give the teacher some reading material on ASD as a holiday gift :)

Anonymous said...

I finally removed my 7-yr-old HFA/Asperger son from public school over nonsense like this. Nasty aides, evil principal, IEP violations, begrudgingly "inclusive" general education classroom. The best IEP or BIP in the world is useless if the faculty and staff ignore it or don't understand how to implement it (or don't think they should have to). Absolute nightmare. My son excels in academics and loves to read and work independently, so I placed him in a private Montessori school and it's been AMAZING. I know all Montessori schools aren't like ours (some won't accept kids with special needs), but you might investigate this option if you think it could be an appropriate placement for your son. Now that my son isn't being bullied by staff and rushed and stressed and bored and dragged around by the arm all day in school, he's blossoming.

Mom on the Edge said...
This comment has been removed by the author.
Mom on the Edge said...

He's in private school so has a "service plan" instead of an IEP. I talk with the principal regularly and am actively pushing them to provide more training and resources. So far, Sky is enjoying school and doesn't seem to feel stressed or bullied. When/If that changes, we will act swiftly. Because we live in the rural Midwest, we don't have as many school options, but we are making it work. My main frustration is that the teachers seem unable to generalize the knowledge they have acquired about ASD. It seems like we (his parents) are in a constant dance with them.

Anonymous said...

I was told for years that you should avoid putting an ASD child in a private school because (a) these schools don't have to follow IDEA and (b) they can kick your child out at any time. My son was kicked out of a private church-run preschool just after he received his ASD diagnosis, so I was terrified of any private setting. He moved into public school from preschool on into second grade. But the stress of the bells ringing, the sitting at a desk all day, the having to do worksheet after worksheet covering material he'd already mastered, the chaotic cafeteria, and the easily irritated teachers and aides finally took a toll on my son. He lost weight every school year, wasn't learning anything, and was acting out in school when he was fine at home. The main problem was that the teachers and aides were mean to him, and treated him like a "problem." He was the smartest kid in the class, but they didn't care about that.

In Montessori elementary, the kids come to school and decide what they want to work on. The teachers guide the students in what they're trying to accomplish, and sit with them in small groups for certain instruction. No desks, no bells, no cafeteria. The kids receive better "social skills" instruction in this natural setting than was ever provided in our public school through a million different IEP goals, and my son finally gets to work at an accelerated pace for academics.

No matter how much our teachers and aides in public school knew about ASD, they still weren't able to allow my son to be himself or fit in. He was held back academically because he had to do the same thing everybody else was doing. This is a kid who lives to learn, so not being allowed to learn in school was very frustrating for him (frustration leading to, of course, behavior problems). And since the unstructured social time in public school (recess, cafeteria) was chaotic, my son was lost, just wandering around looking at things, completely left out of what was going on with his peers. We don't have this problem in the Montessori setting.

I'm glad your son enjoys school and isn't stressed by it. I think our public school is just particularly bad and it was driving us nuts. My son was often oblivious--he thought the teachers were his friends--but my husband and I could see what was going on and it wasn't pretty.

Anonymous said...

Oh, I forgot one of my original points. I was told to avoid private school for an ASD child, but it's a private school (and not a special education or autism school) that has completely saved us. It sounds like a private school is working for your son, too.

Kati said...

Have you asked the teacher if she would ever consider watching the show "Parenthood?" I find that the character Max provides a certain level of enlightenment to others as to what it is like to have a child with ASD. I love the episode where Max's father thinks breaking the routine is no big deal and that they can just skip school for a day to go to the amusement park. All is well, until it's not and a huge tantrum rages. I think that helped one of my girlfriends understand some of the tricky moments you cannot always plan for...

I also think Max's character misses so many social cues it is almost a bad stereotype, except that there is always a kid that would fit that mold perfectly. Also, his ability to get hung up on small details and not let things go.

Unfortunately I think TV can do more to educate many folks than a well-intentioned conversation or a good book. At least someone feels like they are relaxing while they are really getting a message ;-)

Mom on the Edge said...

I watch Parenthood, too. Not sure this particular teacher would welcome television suggestions (or any suggestions for that matter). It would be nice if the Max character was a little more subtle, but at least there is an effort to portray ASD! Do you remember when the amusement park episode was? I didn't start watching until the end of last season so missed some good ones, I think!