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.

What the hell?

Maybe there have always been stupid people in the world and it's just easier to hear about them because of the connected world. Facebook, Flickr, Twitter, Instagram, everything makes it harder to hide your offensive stupid horrifying behavior.

But an honest question here. What the hell is happening in this country?

• In Florida, a police sergeant shows up at a shooting range with targets that resemble Trayvon Martin. You remember Martin - the 17-year old boy who was shot dead by his neighbor, who then tried to hide behind the "Stand Your Ground" laws in Florida? Now he's a shooting target. Nice.

• A judge in Montana emails around a "joke" that apparently suggested that President Obama's mother had engaged in bestiality. 

Let me say that again, just to be clear. He sent an email that suggested that the mother of the President of the United States had sex with a dog. Nice. Remember all those times when people said things like that about Barbara Bush? Yeah, me neither.

The judge has since retired. He wasn't terminated. He retired, which means that now the state will be paying a lifetime pension to a racist idiot.

• In New York, a teacher assigns her students to "think like a Nazi" and make a persuasive argument as to why "Jews are evil and the source of our problems."  The school has apologized. No word as to whether the teacher faces any punishment for this heinous behavior. 

• This comes after ANOTHER New York teacher was called out for story problems about beating slaves. The assignment was in 4th grade.   Nine and ten-year old kids were asked questions like "a slave was whipped five times a day. How many times was he whipped in a month?" No word if this teacher was fired, but the whole school is undergoing "sensitivity training." Ahem.

• And then, there was the Georgia teacher who took it one step further, asking questions about how many beatings Frederick Douglass received. Also, this lovely example: “Each tree had 56 oranges. If eight slaves pick them equally, then how much would each slave pick?”

In GEORGIA. Which has a history of, y'know, slavery. Again, no word if the teacher was fired, but the principal was apparently looking into "what staff development is needed for the teachers."
 
Can someone explain exactly what kind of human resources training is needed to remind people that beating people is wrong and treating human beings like property is also totally the fuck wrong?! Jesus almighty Christ on a cracker.

I don't even know what to say. If a teacher assigned my kid something like that, there would be hell to pay. I'll be damned if some tone-deaf idiot is going to be indoctrinating my kid with their stupid racist 19th century ideas.

And the rest of them? I don't even know. What I'm going to do is raise my son to be open-minded, and to not be afraid to question authority. We all lose when people behave like absolute pigs and no one speaks up.

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.

Dealing with it, whatever it is

I don't even know how to start this. I want to use some witty introduction, a comfortable joke to ease into it. Maybe some deft wordplay. But I have nothing. So let me tell you what's happening.

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.

So in the last week, I've been coming to terms with the idea that my kid might have some bigger challenges than just having problems at school. It's tough. There was a nice article in a local magazine talking about adjusting to the idea that your kid has special needs. That's a great catch-all term. It covers everything: asthma, ADD, obesity, obsessive-complusive disorder, depression, anemia, blindness, everything. And when you look at it that way, how many of us have kids with special needs? More than a few. Just in my small circle of friends, I know easily half a dozen parents who have children with some challenge or another: cochlear implants, feeding tubes, learning disabilities, ADD. Stuff. Kids have stuff, and they deal with it.

Am I surprised? I guess I'm not. My brother (about whom I've written before) was diagnosed with hyperactivity and had major issues at school. He was probably bipolar, too, or something similar. His mother and I both have anxiety issues, and I'm almost certainly ADD. So, yeah, it's not a surprise when I really think about it.

Am I disappointed? Not in him. This is something that he's facing. Would I be disappointed if my child had leukemia? Or high blood pressure? Or if he had to use a wheelchair? Of course not. He's my kid and he'll always be my kid.

I guess I'm disappointed in the way you are when you expect a sunny day and it starts getting cloudy. You know you can't do anything about it, but you just wish that things had turned out a little differently.

What I know is that he's my kid and I need to figure out what's going on with him. I need to help him. We need to know what we're dealing with so that we can help him cope with it. If that means he ends up in some form of special education, so be it. If that means a different school, fine. Whatever he needs.

Right now, we're learning. As one of my wonderful friends put it, the worst part of this is the WTF period, when you know there's something but you don't know what it is. Once we know, then we can help. Once we know, we can develop strategies and make recommendations and suggest adjustments.

But my job hasn't changed. I will never stop loving this kid or wanting him to be the best possible version of himself that he can become. My job is to help him get there. And I'll do everything I possibly can to make that happen.

Not Failing

A month or so ago, I posted in my misery about the tough time my son was having in kindergarten. Since I posted that, I meant to post an update and let you know how he's been doing.

First, we started visiting a therapist with Oliver. The therapist is someone who's experienced working with kids, and who understands childhood anxiety really well. She's been wonderful with O, and he's grown to trust her very quickly. She's pretty certain that he's being dogged by anxiety, and has really worked on teaching strategies for dealing with it himself.

So we had a meeting. Both of us were there. Both of his teachers. (He is in two different classrooms during the day, so he has two different teachers who share responsibility.) The special ed teacher, the nurse, the PE teacher, the school psychologist, the principal, and a bunch of people I can't even remember. It was stunning to see so many people focused on our little guy.

We also had our therapist with us. And she was a godsend, people. Every time one of the people would start suggesting something that sounded off-base - hinting at autism or ADD or other scary stuff - our therapist pulled the conversation back to his anxiety.

In a lot of ways, it was reassuring for us to see that the teachers really didn't know Oliver. We told them that for years, we'd go to playdates and the other parents would tell us what a nice, sweet little boy Oliver was. He wasn't a hitter. He didn't spit at other kids. He didn't start fights. This was about him being overwhelmed in a new environment.

So the teachers have been working, since that day, to make the environment more welcoming for him, and to find ways to reward him for positive behavior. He has a little chart every day that the teachers fill out, so we know how he did during the day. Each part of the day has its own section, so we can see if he has more difficulty in the morning or in the afternoon.

The teachers have moved him closer during class, too. And this little change has made a world of difference. O was getting mischievous when he didn't know what was going on during class and when nobody seemed to be paying attention to him. So that little change of proximity has eliminated most of that issue.

He's blossoming in school now. He's always been smart - we saw his report card, and he's showing great progress in reading and in math. He can count and do simple math in Spanish and in English. He is reading now - short words, short sentences. But he's so proud to be reading, and he loves to show us how well he's doing. He's happier in school, and I know the teachers are happier now to see Oliver doing well. This is what we were hoping to see, and thank goodness everybody's been working together to get him to this point.

Failing?

I've never felt more lost as a parent.

When my son started school, I expected that certain behaviors might become an issue. He's a very shy kid. He withdraws when he doesn't understand something. I expected that, if anything, he'd be the kid who stood on the wall, waiting for someone to invite him to play with them.

This is not what has happened. He's been hitting. He's gone to the principal's office a few times. We've had meetings with his teachers.

I don't know what's happening. I think there are several phases in parenthood where a dad just goes, I don't know what's happening with this kid. Right now is one of those phases.

I think a lot of it is anxiety, and it's anxiety that manifests by him acting out against other kids. Which is a crappy way to act out, I admit, but it's coming from anxiety, not him being a maniac serial killer.

He's still our sweet little boy. He still skips down the sidewalk, he still sings to himself in his bedroom, he still has little conversations with his stuffed animals when we're not looking.

But at school, he's a wilder, more out of control little boy. Is it us? Is it something happening at school? Is it the sudden shift, from a daycare he attended for years to a new school with all new friends? Are we failing as parents, or is his school failing him? Or is it some third option? Not sure.

But it's bewildering, and it's frustrating as hell. I hate the feeling that each day, something's going to happen. I pray each morning - yes, I say a prayer to the Lord above - that he has a good day. A good day right now means he keeps his hands to himself, he doesn't hit other kids, doesn't kick them, doesn't trip them in the hallway. I wanted to be hearing about the books he was reading, the kids he was befriending, the awesome things he was learning. Instead, the reports I'm getting are about which kid hit him first and how he responded. I hate this. I know someday we will move past this period, and we will look back at this as ancient history. I want that moment to be today. I want this to be over.