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.

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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"
"Why?"
"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?

Sky in Motion

Yeah. This is a little of what it was like to have Sky in Japan at age 4. See him in the distance? Running away...

Schoolhouse Blues, Part Deux

"He did not have a good day," his teacher told me as she shoved him in my direction.

On a typical day, the entire class comes out to the playground to be picked up by their parents, but on this day, Sky had an appointment, so I got there five minutes before the final bell and waited for him outside the classroom. As I neared the door, I heard his teacher say, "Sky, if I have to hold your hand all the way to meet your mom, I will." It was not a kind gesture of support, but a threat made to him in front of his peers. Ducking out of sight so my presence wouldn't make it more difficult for him to pay attention for those last five minutes, I only glanced in long enough to see that he had returned to his desk from his cubby and that she was grasping him by the collar. He sits in the front of the room, so all of his classmates could see her holding him this way. When she brought him to me, she had her hand on the scruff of his neck. Because he sometimes needs hands-on direction, there are times when I guide him gently by the neck, so I didn't think anything of it. None of what I was seeing really registered. Only as we were getting into the car did I realize that her grip had left a red mark.

By all accounts, this is a good teacher. One of the best teachers in the district. She has her classroom set up to encourage maximal functionality for a kid like Sky. There are sound-deadening head phones, multiple opportunities for movement, and various visual cues taped on the walls throughout the room. If Sky needs to be away from his peers, she has places for him to go so that he can do his work. Her language is clear and direct and easy for him to follow. But somehow I saw this break down yesterday. And I worry about what I am not seeing during the numerous hours he is there without me. This is any parents greatest fear, but it is worse when your child has language issues and when he has trouble reading social cues. There are always pieces missing that make it impossible see the whole picture.

Ren and I have spent hours working with the school and Sky's teachers to make sure that they understand his challenges and have some concrete interventions in place when he is having a rough day. Sometimes the interventions don't work. Sometimes it's annoying as hell to have him in class. I get that. But, it doesn't change the fact that Sky's issues are real, they are persistent, and they will continue to challenge us for many years to come. He will make progress. And he will regress. This is how it goes. Life with a kid on the spectrum is the most brutal of marathons. No matter how spent we feel and no matter how shredded our muscles get, we still have to get up each morning and run the race again.

I have no choice but to deal with what I saw yesterday. To talk to the principal, the special ed consultant, and his teacher. Don't worry, I will say what needs to be said. I just wish, for once, that someone in the room could actually grasp what it is like to live with and fight for a kid on the spectrum every. single. day. Just once (tomorrow would be fine), I'd like to wake up and not have to fight some version of this very same battle.

***

Schoolhouse Blues (part 1) is here. More about Sky and school here and here.

The Things I Think about When I Just Can't Sleep

You remember my post about my multiple mom fails the first year of Pink P's life when we found ourselves in Japan? Well, it turns out that I didn't fail in one important way--I got her immunized on the Japanese schedule. Besides that big, bad BCG shot, the rest were uneventful. First of all, there were fewer of them. Second, they were spread out. She was never given more than one immunization at a time. This means that I had a hard time keeping up with all of them, especially since I wasn't terribly familiar with the Japanese names for all of the vaccines, but it was a sane, safe schedule. If I have learned anything from being a mom in two different countries, it's that much of what seems to be common sense is learned and largely subjective. Once you realize this, it's hard to accept most anything at face value.

Recently, I've been following the story of the regression of my friend's son (who has been diagnosed with PDD-NOS like Sky) following his flu shots and a round of antibiotics. So now I am learning a lot about how certain foods and chemicals can affect kids with autism. It's a vast and scary subject, but with one kid on the spectrum and another with allergies and asthma, it's time to take a closer look. Since we are a family that travels a lot internationally, going vaccine-free is probably not an option for Stow, but we will proceed with extreme caution.

Anyone with an ASD kid knows how hard it is to maintain the delicate balance that enables our kids to make it through the day (even for the "lucky" ones like us who have kids that function fairly well in the neurotypical world). During the past eleven months, I've discovered that every mom has a different story to tell about her ASD kid. And what works for one kid may not work for another. Moving forward can be hard. I'm still feeling overwhelmed on a pretty regular basis and try to keep reminding myself that it's okay to take baby steps as long as we keep moving forward.

So, now that we are making progress with speech, OT and social skills groups, it's time to tackle the question of diet and possible biomedical connections. Maybe there's nothing there, but it can't hurt to look.

Baby steps. Baby steps.

A Day in the Life

Thanks to SRMM for inspiring this post. She wrote "What I Did All Damn Day" in response to the condescending question often asked of SAHM's: "What do you do all day?" I work, so I don't get that question, but there are those out there that assume that working moms are somehow not really moms. So, here's a day in my life.

12, 2 and 4 a.m. Pink P wanders into our room and has to be reminded to go back to her own bed. At some point, she ends up sleeping on the green glider I sit in to feed the baby.

3 a.m. (though, thankfully, not every night!) Stow cries. Ren gets him out of bed and changes his diaper. I kick Pink P out of the glider and then stumble to the bathroom before settling in to a 20-minute feeding session.

5 a.m. Sky asks me if it's time to wake up. "Read in your bed," I mumble before drifting off for about 30 more minutes of sleep.

5:45 a.m. Up and in the shower. During the 15 minutes it takes me to shower and dry my hair, I am interrupted approximately five times. At least one of these times (though often this happens way more than once), Pink P comes in crying because Sky has picked on her. Throughout my shower, I hear a cacophony of crying, laughing, and yelling (mostly by Ren who attempts to herd the cats while I am busy). This happens every morning.

6:00 a.m Time to get the kids started on their morning routine. Pink P loves to choose her clothes, so she quickly picks out an awesome combination of stripes and hearts and gets herself dressed. Sky, who has already been awake for hours, has trouble pulling himself away from the Lego Star Wars book. Eventually, I coax him into getting dress, making his bed, and spending 15 minutes in his therapeutic sling swing before heading to breakfast. This was virtually impossible before we made a visual schedule, but these days, most mornings go fine-- that is except when they don't. Then all hell breaks loose.

6:30 a.m. Making breakfast and lunch. Fortunately, Ren helps with this part. He usually washes and cuts all the fruit that we need for breakfast and lunch. He also gets the older two started eating while I finish getting dressed and gathering my stuff for the day. He will sometimes also start making lunches, which is why I love him so much. On the days the kids take "Japanese lunch," there are rice balls, various vegetables, cute fruit, and some kind of meat involved. On non-Japanese lunch days, the bar is lowered considerably. As you can imagine, I ♥ non-Japanese lunch days!

Sky and Pink P usually bring out the worst in each other over breakfast. Fortunately, I've pretty much devised a way to keep them apart. Pink P eats while Sky swings, and Sky eats quickly, so he can get back to his Lego book. Pink P, on the other hand, take approximately two hours to eat. This also means, fortunately, that they don't have much time to play together.

7:00 a.m. While Sky plays upstairs, Pink P finally finishes eating and gets her nebulizer treatment (administered by Ren). Meanwhile, I dress and feed Stow.

7:30 a.m. Shoes and jackets on, bags in hand, we head out the door.

7:45 a.m. First drop off: Pink P. She refuses to let got of my leg when I attempt to leave her there. She loves her preschool, but she does this every morning just the same.

8:00 a.m. Second drop off: Sky. We have to get there right at 8. If he's to early, he has to go into the cafeteria (a.k.a "a special ring of hell for kids with sensory issues") to wait. If he's too late, there are too many other kids creating too much chaos, and he panics (which means I get to go in with him). As we pull into the parking lot, Sky packs his backpack with three 2-pound weights. This is our transitional activity meant to get him focused on walking into school calmly and quietly. The weights are for added compression, for more calming.

8:15 a.m. Arrive at work. Phew!

8:15 a.m. to 4:30 p.m. "Work" (because all that stuff I did up until now was something else). Today was a good day, so no calls from school, no trips to the doctor, and no crying college students or crazy e-mails.

4:30 p.m. Get home. As soon as I step in the door, it's time to feed the baby. I feed Stow and then start the evening routine. First, I check Sky's homework and start making dinner. While I make dinner, Ren gives Sky and Pink P their baths. None of this is easy. It involves screaming, resistance, and a lot of repetitive noises. It also involves slathering Pink P with greasy eczema cream which she proceeds to deposit on furniture throughout the house.

5:45 p.m. Dinner. Sky hums. We remind him to stop. He hums. We remind him to stop. He hums. We remind him to stop. He hums. We give up.

At some point during the meal, Pink P finds a reason to cry. Her crying triggers a near meltdown in Sky, who manages to grab his sound dampening headphones and flee the room before Pink P hits hyper-pitch. Eventually, Pink P is appeased (like always, this requires two princess bandaids) and Sky is lured back to the table with promises of a piece of Halloween candy.

6:45 p.m. Start brushing teeth and pushing the kids toward bed. If Sky stays up too much past 7:00, he's a wreck the next day, so the goal is to have teeth brushed, stories read, sheets tucked, and kids asleep by 7:15. Since Pink P is a night owl, this is not always easy. Fortunately, lately she's taken to reading in bed. Once the older two are in bed, we finish cleaning up from dinner and give Stow his bath. He eats again and goes down for the night around 8:30.

8:30 p.m. Start dissertation revisions, check blog, chat with online friends. For the next three or four hours, I attempt to make progress on chapter edits, grade papers, and begin prepping my classes for the next day. I also stare into space. A lot.

12:00 a.m. I realize I am not getting anything done and go to bed.

My daily schedule does not include the trying hours between 12:30 p.m. and 4:30 p.m., when first Ren picks up Pink P (at 12:30) and then Sky (at 3). The last 90 minutes before I get home are apparently the worst since both kids are tired and more prone to tormenting each other. Don't get me wrong. They love each other. Unfortunately, that love is currently expressed in less-than-lovely ways. Not only does Ren keep everyone alive and injury-free until I get home, he also does all of the laundry and cleaning, and most of the grocery shopping.

We survive by strict adherence to our schedule. Any deviance can be catastrophic. Therapy days, sick days, school holidays-- all of these are more challenging. Still, somehow we manage to get through and start anew every morning.

(As I was writing this, it occurred to me that every mom I know tells some version of this story, and I am reminded of the oh-so-catchy tune: "Weebles wobble but they don't fall down..." There. Now it's stuck in your head, too.)