Thursday, February 25, 2016

The Temper Tantrum

I've hesitated to write this post for a while now because...well.

It does not paint me in the best light. Or a very good light at all.

You know those mom-confessional things you see out there online sometimes, where the harried mom fesses up to some of the ways in which she's not perfect with her kids, like maybe she let them eat Pop Tarts for breakfast or snapped at them when they were running late? Sometimes I read these things and think, either you're afraid to make public some of the things you're really ashamed of (and for that I can't blame you)...or, I'm just a pretty crappy mom sometimes.

So here goes. I write this so that anyone else who has had a really crap-tastic parenting moment might feel just the littlest bit better. Or if you haven't fallen this far, you can take comfort in knowing that.

A few weeks ago, we bought a new vanity for our bathroom, and it left us with an enormous box. Ethan started walking around with it over his head, and then got the idea to punch holes for his eyes, nose and mouth and stumble around with it like some sort of robotic monster. He even wrote "Get out of my way!" as a bubble coming out of the mouth.

I thought it was the cutest thing ever. Annoying, but cute. Anytime he takes any sort of initiative with creative play, I still grin from ear to ear. I complimented him on his robot. He was so proud.

For the next several days, we stumbled over the robot but I didn't want to throw it out. I told Ethan we'd have to get rid of it...soon. Only then my temper took things into its own hands.

That Saturday I was struggling with the doldrums. It's probably no secret here that I am an emotional type. When I get into a "mood," it seems harder for me than the average person to quickly shake myself out of it. It's rather like slogging through mud. In the winter, the lack of light and outside time tends to magnify these kinds of moods. Add to that sick children that keep me inside and away from adult interaction, and sometimes I find myself desperate to do something, anything, to get myself out of the house, doing something different, away from messes that are never fully cleaned up.

But doing something different is exceedingly difficult with three children ages 11, 8 and 2, all with varying personalities and interests. I've written about this before. I can't tell you how many times I've attempted to hype up the kids to go for a drive and see something new, and to be met with all kinds of protests. The week before we'd driven to the beach in winter for the first time ever. And it was awesome.

This Saturday, with Dan working part of the day, I wanted to do the same...go somewhere that wasn't the grocery store and forget it was February. If I had been a little bit more sane I should have realized the kids really just wanted to stay home and chill, and I would need to buck up and deal with it.

But no, I had to turn into cruise director again. I figured we'd go to Yankee Candle, an hour's drive north. Either that or the butterfly conservatory. It was warm in there...we could dream of spring. Even Chloe liked butterflies.

I was met with the usual chorus of whining, grumbling and complaining. Anna had already been there before. Ethan wanted to play Wii. Chloe wanted to leave -- immediately. In a flash I thought of all of the Saturdays I'd spent in the car with my parents, winding around back roads, never stopping or spending any kind of money. I was promising to buy them lunch somewhere. The ungratefulness disgusted me. I wouldn't have dared to throw such a stink when I was a kid.

"I'm going in the bathroom, and then we're leaving!" I yelled. Really I sat in there and cried a little. Why were my kids such brats? What had we done that they were this ungrateful? Why couldn't I think of anything to do that would make everyone happy? Why was I so moody that I had to find something to "jumpstart" myself?

A few minutes later, I emerged, red-faced. Anna and Ethan were fighting. There was more complaining. I don't even remember who or what. All I know, is that in the middle of that, I half-stumbled over the stupid box in the middle of the floor of yet another room that I tried to clean but never looked clean.

I wish I could say that I heard a little voice tell me to stop, and I listened. But instead, I heard a little voice tell me to stop, and I said, No. Way. I started jumping on Ethan's box. His robot. With my boots on. Hard.

I bounced up and down as if it were a trampoline. The already somewhat damaged box buckled and collapsed. Every time I felt it crunch under my feet I felt exceedingly better. I felt better than I had in days. Jump. Jump. Jump. Anna looked at me, amused. Ethan came into the room. Suddenly, I started coming down to reality. The sinking feeling began before I stopped jumping. Then I saw Chloe again, who had a huge pout in her bottom lip and a tear forming in her eye. "Stop," she said, her voice trembling.

Then I heard another voice, clear as day, in my head: YOU are the parent here. And the guilt poured over me like the biggest wave.

"My robot? Why did you destroy my robot?" asked Ethan, incredulously. Of course he would say destroy. He always says that instead of wreck.

I looked at the mess I'd made, and like a toddler, I had no answers. I hugged him. I said I was sorry. Then I went in the bathroom and cried more, in a silent kind of way. I was the parent. What was I doing? What was I trying to prove? I HAD to get myself under control.

I couldn't even get myself to stop crying at first, because while I knew my son would forgive me, I also knew that I'd given him a memory that he wouldn't soon lose. I'd given him a Remember the time mom wrecked the box I'd worked hard on for no good reason?

That's what got me. I could never get that image of his wrecked box out of his mind. Man, I'm starting to cry now writing this. Ugh. Sigh.

I knew I couldn't completely fix things, but I could make it better. First, I rushed out to the garage and found another big box we had out there. I dragged it into the house and told Ethan when we got back from our adventures we would make a new robot. Or, if he didn't want to, I would make it for him.

Somewhat subdued, we headed to the car, and as we drove, we talked. We talked about how sometimes even grownups mess up really bad. We talked about how mom didn't get as much practice as she should have as a kid maintaining self-control, so she had to work harder at it now. We talked about why I so firm with them some that maybe when they grew up they wouldn't struggle quite so much with certain things. We talked about forgiveness and how we all still loved each other.

Then we went to Yankee Candle and had a pretty good time. And came home and made another box robot (who just ended up in recycling after several weeks of hard play).

Ethan hasn't brought up my temper tantrum again, but I know he might. I am going to try to not be too hard on myself. If anything, I can say this. I learned something I already knew. Only it was solidified. I am the parent here. I may fail sometimes, but my default can't be no self-control. I know that now more than ever. I'm just grateful my kids are more forgiving than I am sometimes.

Friday, February 19, 2016

Virtually Indistinguishable

Ethan had his eight-year checkup a few weeks ago, about two months late. We waited for too long in the exam room and then in came the pediatrician we've had since Anna was born. Ethan was sniffly but pleased to not need to get a shot. He began chatting it up with the doctor, asking him what the special light attached to the exam table was for and whether or not there was something secret hiding behind one of the ceiling tiles that looked different from the rest.

When Ethan was sidetracked for a minute talking to Chloe, the doctor turned to me and remarked, not for the first time, about how amazingly well Ethan is doing. "I mean," he said, "he seems virtually indistinguishable from his peers."

I knew what he was trying to say, even if it wasn't completely true (his developmental pediatrician, an expert in autism, has never said he comes across as completely "typical").

I knew that our discussions about him no longer needing therapies other than a social skills group, and being at or above grade level with no supports, and having friends and playing sports (despite some minor challenges) were very much reasons to celebrate. We DO celebrate. We never take the strides he has made for granted.

But still -- something about that phrase grated on me like sandpaper.

I don't want my son to be "virtually indistinguishable." I want him to be Ethan.

And I wonder: When did that be, or should that ever be, the end goal?

I've said this before and I'll say it again: I will never be, I can't in good conscience be, one of those people who states that everyone with autism is just fine the way they are, thank you, and shouldn't be forced to conform to the neurotypical world. It's one thing to say therapies are unnecessary when you have a quirky child with some restricted's something completely different when you have a non-verbal person who has trouble with the simple activities of daily life and is possibly harmful to themselves or their loved ones. Some therapies are very much necessary and tremendously beneficial. I'm not sure where my brother would be right now without the therapies he received over a number of years. It would not be a good place, I can say that.

But there is a danger, for those of us with children on the milder end of the spectrum. There is a trap, and I fell into it myself early on. It's that feeling of, My child is sooo close -- if I just do abc therapy or xyz therapy, then he'll be, I'll say it, normal.

It's this kind of thinking that leads us to inadvertently chip away at our kids' childhoods, because they're going to therapy sessions instead of being allowed to play in the park or even play video games. Interactions become less about quality time with the child and more about "teaching moments."

It's this kind of thinking that causes us to sometimes demand more of our kids than we might a typical child; to see every behavior as linked to their special needs rather than sometimes just "a kid being a kid." I remember one of Ethan's therapists once mentioning about the way we expect so much of the kids on the spectrum at school sometimes. We want every hello to be reciprocated with eye contact and a smile, when how often do typical kids actually do the that as they rush down the school hallways to somewhere?

It's this kind of thinking that makes us constantly see our kids in terms of what they aren't doing compared to their peers rather than what they are learning and doing, on their timeframe.

There is a kind of autism that is very, very difficult. There are people on the spectrum who struggle greatly, and their families struggle greatly. They need tools. They need support. This autism isn't all ugly, but sometimes it's easier to see the ugly side.

There is another side of autism that helps me remember the beautifully unique and wonderful things about autism. Yes -- there are wonderful things, traits I don't want to root out of Ethan.

I love his attention to detail and his appreciation for things others might never notice.

I love his single-mindedness and focus.

I love the way he has trouble lying and takes things at face value.

I love his honesty and the way he feels things so deeply (forget the robotic-like emotion clich├ęs).

I love the way he wouldn't dream about being truly mean to someone (except possibly his big sister).

In my faith, we talk sometimes about the Bible verse that calls followers of Christ a "peculiar people" who are set apart from the rest of the world. It always gives me pause, because as someone who doesn't like to stand out, rock the boat, or cause conflict, wanting to be peculiar isn't a desire I was born with.

But when I think about Ethan and autism, I see a little better. We are aren't here to demand the world meet his needs. There is a very real truth that he has to learn to get by, even with people who approach the world in a very different way.

But conformity is not the end goal. Not for him, and not be for me, either. Instead, how about we learn to be exactly who God called us to be?

Monday, February 15, 2016

Bedtime Stories; Analyzed

The other night at bedtime Ethan wanted to help read a book to Chloe. The rule is two stories, tops: anything else she wants to read goes in the crib with her.

Of course, Chloe didn't want Ethan to read, only mamma, so the compromise that was she would sit in my lap and Ethan would be right next to us and would read one book while I would read the other. That seemed to work. It's just that Ethan managed to turn the occasion into an interrogation.

We started with an abridged version of The Little Engine That Could.

"This book leaves out the part about all the trains that wouldn't help!"
"Yes, I know. This is the version for toddlers."

"Mamma? What's the 'foot of the mountain' mean?"
"It means at the very bottom of the mountain."

"Mamma! Turn back! Why is it that on THIS page the engine is coming from that direction but on the next page it's going a totally different way?"
"Umm...maybe we're just looking at it from a different direction."
"No! There's no way the train can be going that way. They didn't do that right."

I realized he was most likely right. Whoever had illustrated this generic version of the Little Engine had, upon not much inspection, not tried very hard.

I started to wonder if Chloe was going to protest all of these interruptions, but she just went with the flow.

"You know what? I can tell how the Little Engine is feeling by looking at her eyebrows."
"A-ha. I hadn't noticed that before. Good thinking..."

"And why do all the toys on this train look upset except the clown? They should be happy they're going up the mountain!"

And thus, it took us about 15 minutes to read a 10-page board book. This is what happens when you have a very literal child who has a keen sense of detail.

We moved on to the next book. Dora the Explorer. This night was feeling longer by the minute. Never mind Ethan, there are many questions I would like to ask about Dora, such as: Why does your pet monkey wear boots? and Why do your parents care little if you wander through spooky forests or are accosted by a grumpy old troll all by yourself?

Ethan insisted on reading the Dora book. "You don't have to read the Spanish parts!" I added generously, thinking of him laboriously sounding out each word. It had been a long day.

"Why does Tico say he's going to teach Dora's baby brother and sister Spanish? They're babies!"

Here we go.

"Mama? Why does it say her house is so far away? You can see it right there!"
"Well, you a kid these things are relative. Things seem farther away to a child than they actually are." I was talking more to myself than him at this point.

"I don't get this. They tell Dora to take the third path with the frog, but the crocodile and the snake are right there next to the other paths and could just go right through the trees and get her."
"Well, it's not supposed to be exact. They're just trying to teach kids which path to take."

With every question, the Dora book was becoming more ridiculously stupid than I already considered it.

"Wait! Turn back the page! Why is there a fence around her house at the beginning and not at the end of the book?"

Well, wouldn't you know? Of course he was right. Did the people who put these books together make any sort of effort? The editor in me started to get cranky. Or maybe it's because I probably could have headed off to bed myself.

Finally, we arrived at the book's conclusion. Ethan attempted to analyze which of the family members gathered to celebrate the birth of Dora's brother and sister were her actual mother and father, and debated whether or not the babies were really smiling at Dora, but I gently urged things along.

"And another thing..." he was on a roll. "In Chloe's book about going potty, why does the kid say, 'Want to know a secret? You can do it too!' It's not a secret. He's just telling her to go potty!"

And so, a half-hour later, we had finished the two books. I love cuddles and stories with my kids. But realizing lame children's books are even lamer than I'd previously thought, well...

I know there's got to be a way for Ethan to harness these kinds of skills. I mean, honestly, isn't that what I do half the time with my freelance work? I'm searching for out of place commas and dashes that aren't the right length and words that just don't fit right.

Sometimes I wonder if the perfect job for him might indeed be playing a video game over and over and finding every single possible glitch.

For now, story time just got a lot longer, and a lot more involved.

Tuesday, February 9, 2016

More History Lessons

We were driving in the car on the way to a Super Bowl party when Ethan announced, "If someone gives up their seat for an old person on a bus, that's segregation."

"Um, no..." I started to say.

"Yes! We learned about it in school! The people who were black had to give up their seats for the people who were white. And they didn't get to go to the same schools, and at some of the restaurants they had to stand up while the white people were eating."

"I know, buddy. That wasn't right."

"I am glad everyone in our family is white so that wouldn't happen to us."

"Well, Eeth, thankfully that doesn't happen anymore. Or it shouldn't. It's very wrong to treat people a certain way because of the color of their skin."

He went on, obviously repeating the lesson they'd learned. "...and the only place where all were welcome was the library."

"Really? I'd never thought about that before."

"But mamma, if someone is on a bus and gives up their seat, that is segregation!"

"No, hon. Not exactly. When you look at someone who is older or who looks weak and that they can't stand for a long time, that's called courtesy. That's just caring about someone and putting their needs before your own because you are young and don't have a problem standing. And it's not just on the could be on a train-"

"-Or a subway?"

"Yes. Anywhere like that. That's not the same as being forced to give up your seat just because of the color of your skin."


February is Black History Month, and I'm assuming Ethan probably had some very specific lesson he learned in class about all of this. Sometimes he jumbles up facts and needs clarification, but I'm glad he's learning.

I'm glad we live in a very diverse town that to me is the kind of place that would have given Dr. Martin Luther King Jr. hope. Neither of my kids usually describe people by the color of their skin.

I'll never forget the day last year when Ethan was learning about Martin Luther King. "But why did they do that, mama? Why did someone kill him just because he was black?" Tears were welling in his eyes.

I didn't have a good answer. I still don't.

Wednesday, February 3, 2016

Breaking the Pattern

It's no secret that people on the autism spectrum often prefer to weave certain patterns or routines into their daily lives -- and that sometimes disrupting those routines can be stressful.

We're thankful that Ethan isn't the type to be too rigid or particular about the way things have to be done, but sometimes we run into challenges. This is usually because I realize too late that some behavior or pattern has become a necessity for Ethan rather than a preference. That's when we know it's time to disrupt the pattern -- before it becomes even more painful for him to have the pattern disrupted.

All of our kids have always wanted me to put them to bed. I don't know why, but I don't usually mind, because it's a chance to chat with them about their day or give extra cuddles. But over the past few months Ethan's bedtime routine has gotten more and more, well, routine.

First it was saying prayers together. That's cool. Lots of kids have a moment like that with their parents before bed.

Then there was Ethan's invention: The Talking Room. The Talking Room is Dan's and my bedroom. Before being tucked into bed, Ethan wants to go to the Talking Room, turn on one light, shut the door and closet door, climb under the covers, and always ask, "So mamma, what would you like to talk about in The Talking Room?" Usually this means he wants me to tell about my day. Okay, that's fine. I'm glad he's asking about my day. I can understand him being curious about what I do while he's at school.

After that comes the tucking in ritual. I don't know what happened here. It started with a simple prayer and kiss goodnight. Somehow it has morphed into the same script, every night.

Me: Goodnight, sleep well.
Ethan: See you tomorrow.
Me: Okay. (Pause, while he waits for how long the pause is going to be). Yup.
Followed by both of us doing a silly laugh like Ernie from Sesame Street.

I have no idea how this came about. Obviously at some point this happened accidentally. I haven't a clue why I said "Yup." I didn't think it was a big deal at the time. But for whatever reason it set off a button and Ethan decided, "Yes, this is how I would like to end my evening."

I should have seen the warning signs. Several weeks ago I was out late and Ethan accosted me the next morning: "I was waiting and waiting for you!"

"I told you I'd be out late and that daddy would put you to bed."

"But I like when YOU tuck me in."

Then there was the night when we quickly did our verbal routine and he accused, "Mama! I didn't hear you say 'yup'!" A few nights later it was, "Mama, you didn't do the laugh!"

Around then I started to realize we'd dug ourselves into a little rut. We needed to make some adjustments.

Here is the thing about this: there are some autism advocates who disagree with this line of thinking. There are some who would say who are we, as neurotypical people, to not value the important place routine and ritual plays for people on the spectrum? They are comfort. They bring order to their world. Participating in this kind of scripting is a way we show our love for them.

I understand this, but I believe there can be a middle ground. Our goal isn't to grind any trace of scripting or ritual out of Ethan's life. But it also is to help him live his best life in this typical world. It's to help him learn how to cope with the anxiety that tries to come if he doesn't partake in a certain routine. Why is this important? Because there will of course be times that the routine can't happen.

It's a long way off, but what if he wants to live independently someday? Mom can't always tuck him in at night. Or jumping back to the present, what if I go away for a few days? Is he going to end up sleep deprived because he couldn't fall asleep for hours without our little routine?

The more we can teach flexibility, the more he will have the tools he needs to live a life that is not always scheduled and exact.

The next night we told him daddy was going to tuck him in. He wasn't happy. We found a compromise -- I said prayers with him and gave him hugs, then Dan brought him upstairs. The night after that we did The Talking Room but I said we weren't going to say the usual words when I tucked him in.

"Why??" I could tell this was stressing him.

"Because you're a little bit stuck, Ethan. We're just trying to help you get un-stuck. It doesn't mean we can never say the words again. It's just we're trying to help you not to HAVE to say them."

The night after that I told him no Talking Room but we could say the script -- and warned him daddy would be tucking him in the next night.

I think he's starting to see that we respect him, love him, and want to compromise about things like this. We don't want to be ogres who care nothing for his very real need for ritual. We don't want to make him go cold turkey. It reminds me very much of a show I used to watch about people with OCD. They were never forced to stop their rituals completely, immediately. Instead the professionals working with them would introduce what they called "exposures" -- times when they were forced to go without the ritual for at least a small amount of time, sit with that feeling of their anxiety spiking, and then feel the anxiety go down.

This isn't really a big surprise: it seems to be clear that somehow, in certain ways, obsessive-compulsive order and autism are most certainly linked.

I hope Ethan sees that we long to approach these types of obsessions in the same type of way: doing our best not to push him to a point of too much stress or anxiety, but urging him to let go just a little bit, to push himself as much as he can. I hope he sees that while we can't completely understand the way he thinks or why he needs certain things, we are trying to understand.