My Autistic Kid

I forget to blog here sometimes. When my son was little, I would blog all the time, because he seemed to be changing every week. And it was all fascinating. What he ate was interesting, the way he learned to walk and move and communicate was fascinating. I do less of that now.

It's not that he's no longer interesting. It's just that, well, he's older. Change happens more slowly, but it is absolutely happening. He's in fifth grade now. He played baseball for the first time last spring, and in a few weeks, we'll be signing him up for baseball again. He has friends, he plays kickball on the playground. He's hilarious. He's insightful and witty and warm and loving. He's a great kid. He still fascinates me.

For those who don't know, my son was diagnosed as autistic when he was in first grade. My son is 10 and a half and he was diagnosed when he was in 1st grade. So ... he was six and a half.

This is what it looked like, in the months before he was diagnosed. We knew something was different about him. We just didn't know what it was.

Dealing with It, Whatever It Is

My son's got some stuff that he has to deal with. We saw some behavior-related issues last year, but with support from his teachers and other school staff, plus the invaluable help of a therapist that works wonderfully with children, he got better. It wasn't a perfect year, but he ended the year on a good note.

This year - first grade - we saw a lot of the same things. We tried the same kind of techniques that had worked last year, but they didn't seem to be working. There's physical stuff like hitting and getting in other kids' spaces.

There's name-calling. Unprovoked incidents with other kids. It's all behavior that we just don't understand.

See, our son used to be the kind of kid who was described as "really centered." Or "zen." "He's so calm," the other parents would say at play dates. And suddenly, we were in our second meeting in two straight years with the principal, the teachers, plus various other school staff. Suddenly, we'd be dropping him off at school and other kids would run up to us and tell us that he was being mean to them. Or that he had written on their book. Or hit them. This happens a lot.

 So ... we're talking to people. He's still seeing his therapist, but now we're going the next step. We're doing a deeper psychological evaluation on him, running some tests to see what else is going on with him. We might be dealing with ADD. Maybe some sensory issues (things like heightened sensitivity to noise or crowds). Or maybe something like Asperger's.

I resisted the idea of him being autistic at first, because I didn't know anything about it. Literally all I knew about autism was "Rain Man" and the kid in St. Elsewhere. That was it. That was my social context.

I was scared. I don't mind saying it. I didn't know what a diagnosis of autism meant. I didn't know what it would mean to have an autistic son. So I was scared.

But understanding autism helped me understand him more. Most importantly, I understood more about how he saw and experienced the world, and I found out about ways we could help him. He's been seeing a therapist since 1st grade. He's been in a social skills group since 2nd grade. This group, with other kids his age, helps teach him about social interactions like conversations, things that NT people take for granted but are fraught with unspoken rules and norms. The group has been incredibly helpful for him.

He's done occupation therapy before and that's been very helpful as well. He has a lot of sensory stuff - particularly needing deep physical input. When he was little, he would run from across the room and do these tackle hugs. Sometimes, they were strong enough that I almost lost my footing. Physical input. When he did OT, he loved things like diving into ball pits and mats. For a while, I would have him dive chest-first into a beanbag or onto the mattress a few times before he went to school, just so he could get that need met and he wouldn't be craving it at school. (At school, he would often bump into other kids in line, or swing his lunch bag around and accidentally hit them. We think this was him sensory input-seeking behavior. His teachers at the time, unfortunately, had trouble seeing it as anything other than him causing trouble. Sigh.)

My son is an intelligent, witty, joyful kid who reads constantly. Last year his teacher called him "brilliant" and I don't think that's an exaggeration. He also has Aspergers. It's a part of who he is. It's not the thing that holds him back, any more than having black hair holds him back. It's part of who he is.

Signs of Resistance

"It's time to go to school."

"No," he responds calmly.

You know who's not calm? Me. 

I ask him again, twice. Finally, he changes his tune and gets himself ready to go to school.

My son is ten years old. And he's grown; my goodness, he's grown. He's become so much more confident and charming and easygoing. Much of the social anxiety that we saw in the past has dissipated. He walks into the playground and kids call his name. And (Aspie parents take note) he stops and responds!!

There are many things going well. And then ... there's the testing that he does at home.

I'll ask him to turn off the television and he'll ignore me until the third or fourth or fifth ask.

I'll tell him to go to bed and he'll start whimpering, like a puppy dog. (It's obviously fake and I don't even think he thinks it'll work. He just does it instinctively.) 

And then there is the simple act of "No." Not that he wants to put up a fight or an argument. He just quietly says "no." To everything. 

With a smile on his face.

When he was a baby, he would run experiments on us. What happens if I drop my food off the tray? What if I smear it on my cheek? Now, I think he's doing experiments again. He's testing how I'll react if he ramps up the disobedience.

So I've approached with a certain amount of caution. Sometimes I'll ignore him and just ask again. Sometimes I walk off (making sure he sees that I'm irritated) and then come back a minute later.

Sometimes, I'll crack the whip on him. I've had to use my dad voice™ more in the last two months than I did for the previous year. 

"When I ask you to do something, I expect you to do it the first time."

And then I get the whiny response. "Okaaaaaaaay!" 

The whining. I HATE the whining. 

Or I'll get the angry response. He snaps back at me as though somehow I've angered him, instead of the other way around. 

He's testing, though. And he's still an Aspie, so I know that I can't just tell him to cut it out. So I'll check him. "When you respond like that, it sounds like you're angry at me. Are you angry at me? No. Okay, well your tone says something else. So make sure your tone matches what you actually feel." 

All things considered, he's doing fine. He's just testing some boundaries right now. I need to remember that he's always going to be testing me out. What's he really doing is testing himself out. Right now, he's testing out conversation, testing out emotions. He's trying to see what he can get away with, what he does that will upset the people he loves. He's growing into an older kid who needs to figure out how this human interaction thing works. I'm doing the best I can to help. 

What We Talk About When We Talk About Talking

One of the most challenging moments in the day-to-day life of a parent is the unforeseen meltdown. Sometimes, kids just have the wrong thing happen to them at the wrong time and they just explode.

This isn't just true for autistic kids, although I notice it more readily with mine. He doesn't like surprises; when he doesn't get something that he's expecting (recess, dessert) or when he has to change his schedule without warning, those are the days when he's more likely to melt down.

And yes, he's ten. Meltdowns still happen when kids get older. They just take different forms.

I worry sometimes about how I respond to him after a meltdown. I can't talk to him during the meltdown - he's flooded with emotions, and all I can do is to keep him from getting worse or doing damage to something (i.e. throwing a remote control across the room). 

So I talk to him afterward, once he's calmed down. We talk.  

Usually, too much.

I'll explain to him patiently how the rules are the same as they've always been. And how he has to take school/weekend responsibilities/chores/whatever seriously.

Sometimes, I'll talk to him about how he reacts differently than he used to. How he's gotten so much more mature than he used to be, and how moments like this don't come as often as he used to. 

Sometimes, I'll ask him if there was anything I could have done differently. Wait, what?! Am I really asking him what mistake I made when he freaked out? No, not really, but yes, sort of. This is a dangerous avenue, but sometimes I go down that path anyway. I get talking, and look, I'm still a dad that hates to see his kid upset. 

And I think part of it is that he's getting older. I'm so aware that he's not the same little boy he used to be. I can't see ten-year-old him without seeing two-year-old him reflected in his eyes. And sometimes, the conversations we have are really conversations I have with myself. "How can I solve this problem? How did this maturity blossom in you without me noticing?"

Sometimes, the questions I'm asking can never be answered by him. "What are you thinking when these things happen? Do you still trust me?"

I need to shut up sometimes. I know that when it works best, he gets upset and I just step back and let him work it out. He can do it. He doesn't need coaching from me as much as he used to. And he doesn't need me to relentlessly dissect every moment of conflict with him. What he needs to know is that I love him, and that sometimes that love means cracking down on the rules and not apologizing for it afterward. 

"I know."

Sometimes, my son gets stuck in repeating himself. Usually, it's the same phrase or variations on a phrase. This might be an Asperger's trait, or it could just because he's an eight-year-old kid and that's what they do. I don't know.

Sometimes, he'll spin the same phrase multiple ways. Variations on one phrase. "Happy birthday to you. Happy flurth-day to you. Happy earth day to you. Happy death day. Happy smurth day." Just goofin around.

So anyway, yesterday, he didn't realize he was repeating himself. "Dad? I love you."

"I love you too, son."

Two minutes later. "Dad, I love you."

"Love you too."

A few minutes later. "Dad, I love you."

"Son?" He stopped to look at me.

"I love you too."

He looked back at me. "I know you do."

That was the best answer. It's important that he loves me. But its so so so much more important that he knows that I love him. And that his mother loves him. I can't think of a better way to start the day than with that reassurance. He knows. I've done my job, then.

Proud

I made my son an omelette a few weeks ago, and he decided it was the best food he'd ever eaten. He's eaten omelettes nearly every morning since then.

Most days, he'd ask me for help cutting it up. Motor skills are a challenge with our little guy, so we try to encourage him to work on them as much as possible. But when he's hungry, I'll break down and cut his food for him. Boy's got to eat.

But I've tried to get him to do it. One day I noticed he ate his entire omelette without asking for help. I was so impressed. Then I  noticed that the knife and fork were spotless. He never used them. He just picked the omelette up with his fingers, like a hamburger or something. 

But I still gave him credit. Even if he didn't do what I expected, he found a solution without asking for help. That's what you do as a parent, especially if your kiddo has special needs. A victory is a victory. 

But then this happened. 

All I did was hand him the omelette and the fork and knife. The rest was all him. I didn't even notice at first what he'd done. And then I did. And I got a big grin on my face, and I told him how proud I was of him. He was grinning too. 

This was a good morning. 

The Rules Haven't Changed

(Note: I'm going to start working more to keep this blog more active. I have lots of readers out there, apparently. Thousands of you have found this post about double-swaddling, and I'm grateful to each of you for reading it and sharing it. I keep being amazed that people still read this blog, and especially that you still read posts I wrote years ago.

I used to blog a lot more when my kid was smaller. Now that he's older, I have to remind myself I'm still a blogger dad. I'm putting it that way because "daddy blogger" just seems like an insult. 'Oh, you're a daddy blogger, how cute!' No, I'm a dad. Who happens to have a blog. My job is being a dad.) 

When Oliver was little, it seemed like I would blog daily about what was going on with him. When he was a baby, it was easy. First of all, I was home with him for the first year of his life as a stay-at-home dad, so I had lots of time to sit and contemplate his existence. He didn't do much, but it was amazing watching him. He would roll over, he would look at me, he would reach his little doll-like hand out to me, and I would sit and think about how miraculous it all was, and then I'd write a blog post about it.

I'm working now, and he's going to school. So we don't spend nearly as much time around each other.

I'm fortunate, though. My wife and I have a staggered schedule, so she goes to work early and I get the morning shift with him. He wakes up three hours before he goes to school, so we have plenty of time to be with each other. He plays with Legos, he reads, he watches old shows like Godzilla and the Power Rangers and the Fantastic Four cartoons, and we eat breakfast and we talk about stuff. About school. About the kids in his class. About stuff.

And then we drive to school at a breakneck pace, trying desperately to make it before the second bell rang. Usually, we miss it but I just walk him to class anyway.

When he was a baby, I had to feed him bottles of Mrs. B's milk. It was very hard at first, and for the first couple of times, he fought and thrashed and wouldn't let me feed him. It was upsetting for me, and obviously, he wasn't digging it either. So I looked around a couple of other blogger dads, and I figured out that the more anxious I was at feeding time, the more anxious he was going to be. So I started forcing myself to be calm during feeding time. "You're all right, little man. It's just me, and it's just your lunch. No big deal." The more I relaxed, the better it went. Success breeds success, so the better the feedings went, the better I felt about them.

The same is still true. Especially now that we know he has Asperger's, I have to pay more attention to how he's feeling at different parts of the day and how I might be contributing to that, consciously or not. Our mornings have been problematic for a while, and I realized what the problem was. We have three hours - THREE HOURS - to get ready for the school day. And yet, I'd been waiting until the last five minutes of the day to ask him to do some basic things - going to the bathroom, putting on his socks and shoes. And my son is not a person who likes to be rushed. So he'd dawdle, and he'd get distracted, and inevitably it would take him twenty minutes for him to do something that I could do in 30 seconds. And we'd be late.

What's wrong with that equation? What's wrong is that I'm thinking about how I would do it. I would move faster. I would look at the clock. I would realize how late it was. Well, my son is not me. He does things at his own pace. And I just need to accept that. Instead of trying to force him to be me, I need to accept who he is.

And for me, that meant changing our schedule. Now, I give him a full twenty minutes to do those final last-minute steps before we walk out the door. And it works! We make it to school sooner. There's also less yelling, less hectoring, and less resistance from him. I just give him enough time to do his thing. If he gets distracted, I still nudge him back on track. But it's not an emergency anymore. I'm respecting who he is. And I have to remember that my anxiety level feeds directly into his. When the last conversation before school includes a lot of yelling and badgering, it can't be good for his psyche. I like it this way.

So the rules when he was a baby are the same as they are now. When I'm stressed, he's stressed. When I calm down and relax, things go better. He's still the same kid he always was. And I'm still the same dad, who sometimes forgets that.

There's One in Every Class

Photo from Flickr user Jez Page

How can you compose a eulogy for a six-year-old?

What do you say? They're not even at the beginning of their lives. What do you have left? Crayon drawings. Favorite books. Evanescent videos, recordings, photographs. Of course, photographs. We all take thousands of photos of our kids as if they're going to be snatched away from us any moment. We capture every moment, every romp in the park, every play date, every birthday candle, as if it will be the last.

If I think too much about what it must feel like, I just die inside. It cripples me. Because those kids who died in Newtown were our kids. Those children were just like the kids in my son's classroom.

I was just in my son's classroom on Friday. He has a decent-sized class. And there's the usual diversity. You've got the chatty kids and the sad, lonely kids who cry sometimes, under their desks or behind a table. You've got the girls with the pretty pretty hair they can't wait to tell you about. You've got the girls who barely seem like they comb their hair in the morning. You've got the bright-eyed, curious ones, filled with joy, beaming as though from an inner light. The ones who see every adult as a helper and every kid as a friend they haven't met yet. You know the kind. There's one in every class.

And you've got the odd ducks. The ones who glower in the corner, who make big red X's on their papers instead of completing assignments. The ones who flap their arms and shake in their seats and maybe they talk to themselves a little bit. Maybe they wear clothes a little odd, a little askew. They're quirky. I like that word. Quirky. It's not judgmental. I know a lot of quirky adults and I bet they were quirky kids, too. There's one in every class, you know.

Anyway, the arm flappers. The odd ducks. There was one in Newtown. One who died. His mother gave a eulogy for him. She said that he flapped his arms, and one day she asked him, why, and he said it was because he was a beautiful butterfly.

I didn't know this kid, but apparently he had some language challenges. Yet he could still express this, because it was the only possible answer to this question. Of course he was a butterfly. Just like my son is a monster. Of course this is true. It has to be. It's the only thing that can be true.

That kid was autistic. My son is autistic. For a while, I just said he had Asperger's, as if it was some different thing. But my kid is on the spectrum. He is autistic, and when I think about that beautiful butterfly, flapping his arms, I can't help but see my son.

He's not a flapper, by the way.  That's not his thing. He's a spinner, though. Sometimes he spins around and around, and sometimes he takes scarves or belts or just lengths of string and spins them in his hand, around and around and around. He jumps on beds, and he loves giving kaboom hugs. Y'know, the kind of hugs where he starts across the room, and gets a running start and charges at you and KABOOM! You get a hug that rattles your teeth. That's my kid. That's what he does.

I can't think too much about what happened in Newtown, but I know this. The kids in those classrooms were just like the ones in my son's classrooms. The bright ones and the dark ones, the pretty ones and the smudgy ones, the steady, calm ones and the arm flappers. Those kids remind me too much of his class, and your children's classes, and every classrooms. These weren't characters in a movie or a novel. These were just kids. Like my kid. Like yours.

Goddammit. I'm not sure I'm going to be able to sleep tonight. I just keep thinking about that little boy, the beautiful butterfly, and my heart breaks and breaks and breaks again.

Which is which?

I've slowed down on this blog, and here's why.

I have two different identities. I have my own name, my own identity, online. I'm on Twitter and on Facebook and on myriad other websites, using my given name. I have hundreds of friends IRL - in real life - and hundreds of online connections.

And then there's this identity. This version of me: this identity that I have constructed over eight years, before I had a son. Before Facebook. Before Twitter. Waaaay before Pinterest. My online identity has existed since 2004. I've written about politics, about music, about my family, about popular culture, and a bunch of other things.

And now, I write on Twitter and Facebook and in other places about pop culture, and music, and my family.

See the problem?

So I've had to reassess, constantly, which version of me will exist on this blog. The more I share under my name, the less material I have left for the blog. It sounds odd, but there it is. And the other thing is that I find it somewhat comforting to be able to write under my actual name. I enjoy seeing that there are people who have known me (and met me, and worked with me) who stay in touch with me online.

Every person is a brand now. Every person markets himself and herself with everything they say, everything they tweet, every comment they leave on a blog. And so now I have two brands. It can be a bit confusing at times.

Some people know me on both sides, under both names. A few people. I say things here that I can't say under my own name. Mostly about my employers. (And interestingly, I find that my Twitter stream is mostly used for profane messages about Seattle traffic.)

So there will be things I talk about on both sides. Here, I'm going to talk about my son. My son has been diagnosed with Asperger's Syndrome, and I'm going to talk more about in the months and years to come. It's important. And I can be more candid on this blog than I can under my own identity.

It's important for me to talk about it here because some of you have known me for years and years. I know a few of you used to read this blog back when it was a Salon blog. I have longtime readers - I suppose I could say you're friends, at this point.

I'm still going to talk about my son's diagnosis under my real name. But I can be more honest here, more unguarded. I can talk more about my own challenges, my doubts, the struggles.

In both of my identities, I am a political animal. I am a writer. I am a dedicated husband. And I am the father of a boy who has Asperger's Syndrome. Whoever I am, these are the things that will never change.