Saturday, January 30, 2016

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.

Wednesday, November 18, 2015

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. 

Sunday, October 18, 2015

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. 

Friday, July 31, 2015

Flashback: Back to Regular Dad

I posted this almost nine years ago on my old blog. I've been thinking a lot about my little boy, who just hit his tenth birthday. (I need to write more about him. He's amazing.)

Anyway, this seems appropriate and it's not on this blog yet, so here it is.

June 30, 2006

I know that ticklish spot, right under Oliver's chin, and I know that when I hit it with my bare toe just right, he goes spasmy with giggles.

I know that sometimes, his favorite thing is rolling across the floor like a log going down a hill. And that, if I gently nudge him with my foot, he'll roll and roll until he hits the window, softly giggling the whole time.

I know that he takes his naps almost like clockwork at 9 am and at 3 pm.

I know that he loves aquariums. And peekaboo. And watching birds. And watching the construction trucks that stream by our apartment. And anyone walking by our window.

I know that he smiles and occasionally waves at strangers. And he flirts with every woman who works at the grocery store, and they all flirt right back.

I know that when I eat snacks, I'd better put down a handful of Cheddar Bunnies or Veggie Booty for him, or else he'll get resentful.

I know that my little boy loves me. I know this. I know if I lay on the floor, sometimes he crawls right up to me and puts his little head against my chest for a few moments. If I'm really lucky, he'll crawl up to my face and give me a wet, sloppy, open-mouthed gooey kiss right on the lips. And that's the best thing ever.

Today is the last day I get to be a stay-at-home dad.

Mrs. B came home tonight and began her summer vacation, which is (unfairly) only six weeks. She gets a month and a half to be the primary caregiver for Oliver, while I try to find myself some gainful employment. And then, when the fall comes, both she and I will go to work, and Oliver will go to the day care seven blocks from our house.

I think back to those early days, when I worried if I was ever going to get the hang of taking care of him all day. (Actually, that first day, I was really worried if he was ever going to take a bottle from me.) Naps worried me. Feedings frightened me. I was constantly worried that I would poke him in the eye, or drop him, or something similarly awful.

And here we are, ten months later. Naps don't scare me any more. The bottles aren't even an issue anymore. We do two meals a day, two naps, hours of playing, and sometimes I'm exhausted and nap while he does and sometimes I don't even bother. I can keep up with him. He doesn't scare me anymore.

It's been nearly a year that I've been taking care of him, and we've grown so much together. I feel privileged to have had this much time with him, that we've been able to afford (barely) to do this. I have a bond with our little boy that not enough fathers get. My own father never had the connection with us from the early days that I get to have with Oliver.

Now I have to readjust to being just a regular working dad, one that drops his kid off at daycare in the morning and sees him at night for dinner and sleep. (Actually, the daycare won't start until late August, but stick with me, folks, I'm on a roll.) I won't get to see him play during the day, giddily tearing through his books or tossing around his blocks, one by one, with a squeal of glee every time one flies into the air. Those moments will just be on the weekends.

I'll miss all the intensive time with him. Hours of playing on the floor, hundreds of books read, balls tossed, blocks stacked and tumbled, messes made and cleaned and made again. I won't miss the problems: the difficult naps, the teething miseries, the days of complete distraction where he couldn't do anything for five minutes without screaming in frustration.

Well - I say I won't miss that. But I will. Because when things went wrong, I was the only one he had during the day to make things better, and almost always, I figured out how to make it better. I got him to sleep. I provided teethers and (before he had actual teeth) my fingers to soothe his aching gums. I found ways to keep him entertained. I figured out how to be his parent, the caretaker, the one he relied on. I learned how to take care of him, and he learned to trust me.

I don't ever want him to forget how much that time meant to me. I know I will never forget it.

Friday, June 19, 2015

Survivor's Rage

Another empty cubicle at my office.

We came in Monday morning and she was gone. Nobody knew what she did, who she offended, why she got the axe.

We all assume it wasn't for a rational reason. It never is. People here don't get fired because they miss their numbers or because they violated some crucial policy. It's because their supervisor didn't like them. Didn't like their attitude. They spoke up too much. They questioned too much. They showed too much independence.

We don't value independence. Our directors want people who are malleable and scared. We are intimidated, embarrassed, harassed. It's all small and subtle, often behind closed doors.

My last colleague - she was smart and passionate about her work. She read the news constantly: she was the most plugged-in person in the office. And she was loved by everybody in the office.

Almost everybody.

She dared to question the ideas of our director, and she got the axe. I don't know what happened, and I never will, in all likelihood.

In my small department, I've lost four colleagues in two years. It's a haunting thing to come in and see that empty office, and know that someone else failed the test.

My job is almost certainly fine. I have no concerns that I'll get the axe.

That's not enough. There is no job security in a place that fires someone every two to three months. There is no peace of mind when you know your entire team of colleagues might be gone in a year.

And we're just expected to carry on as though everything were normal. Our colleague is no longer spoken of. She is an unperson. She stopped existing the minute she was terminated. All of her work - it stopped. Her projects ceased to exist. Nothing she did will be mentioned again.

I have a good job. I am paid well. We have retreats in nice places and we're wined and dined. But the trade-off is too much. I've lost people I care deeply about. I've lost them for stupid silly reasons.
Because my boss decided to get rid of them.

This isn't survivor's guilt. This is survivor's rage. I'm angry that my friends - my very talented friends - are being treated so badly. I'm angry that I meet up with them months later and they're still shaken. Still questioning what they did wrong. Still wondering if the cruel things said about them are actually true.

I hate this place. I hate my boss. I hate the leadership of this toxic twisted office.

I'm sending out resumes and going on job interviews. I'm pushing as hard as I can to find somewhere else. This time, I don't want an escape hatch - I want to move up the career ladder. I have a huge palette of skills and, as one of my friends put it, I will be the answer to someone's prayers.

I want that to happen soon. I don't think I'm in danger of losing my job anytime soon. But I have learned how to survive in this toxic place, and I do it by swallowing my complaints and my anger and playing along. Going along to get along. I'm tired of it. My soul is tired, people.

Monday, April 13, 2015

A Death in the Family

My dear cat Chloe fell asleep for the last time last Friday.

Here's how we met. Chloe lived with three other cats in a house. I met a girl who lived in a room in that house. I'd go over to visit her and Chloe would come into the room and hang out with us. She would jump on my hip when I was laying down and just sit there, content, purring like mad.

Even then, she was partial to me. She could come to visit us, but she would sleep on my side of the bed. She'd rub her face up against me and I'd just pet her and pet her. We connected with each other instantly. She adopted me: I didn't adopt her. She chose me.

Chloe hated the other cats in her house. She became a bit of a thug - she would hiss and slash at the other cats when they walked down the hallway. When that girl moved out to move in with me, Chloe came with us. That girl became Mrs. B, of course.

According to her former staffer's best estimate, Chloe was six when she came to live with us. I put her in a carrier and drove her to her new home - a cinder block one-bedroom apartment. She looked around, saw that she was the only cat in the house, and began purring madly. She was home.

If the math was right, Chloe was twenty years old when she finally left this mortal coil. She stayed with us through four moves, and when I moved into my own apartment, Chloe came with me.

She was frail. Her hips were especially painful. She had hip dysplasia - her hips would slip out of joint. Also arthritis. There were days when she could barely walk across the room. She couldn't jump anymore. The kitty who used to jump up on the bathroom sink couldn't jump onto a foot-high couch.

I had cat stairs - one so she could get onto the bed, and a shorter set of stairs so she could climb onto the couch. It helped. Not enough. But the stairs helped.

She had other stuff. She had the inevitable thyroid problems. She had chronic renal disease - that was diagnosed a couple of years ago. One of her kidneys seemed to have stopped functioning completely.

Because of the kidneys and everything else, she became dehydrated easily. I was giving her fluids every other day, plus pain medicine once a day. Plus kidney medicine. Plus glucosamine in her food.

At some point, it just wasn't enough. None of it was enough, because cats get old, as we all do. Cats get old, and at some point, their life becomes just existing from day to day. One of my friends asked me if there was joy left in her life.

I like to think so. I don't like to think that she was just existing. She still ate. She still curled up with me - even when she could barely move on the bed, she would curl up next to me and purr her soft, fragile purrs. She loved being cradled and she loved being next to me. And Oliver. She was a snugglebug to the end.

Chloe would follow me from room to room, waiting for me to stop moving so she could sit down next to me. She always did this; even when she was at her weakest, she would do that. I was always her person.

Last Friday night, she fell asleep, and she was gone Saturday morning. Her body was still there. But Chloe had moved on. She was someplace where her hips didn't hurt, and where I didn't have to poke her with needles and fill her up with fluids like a water balloon. Some place where she could frolic and be free and joyful and happy.

I buried her in the backyard with one of her crinkly toys. And I cried. I cried because I missed her, and I cried because I was relieved. She was finally free of the pain and the suffering. When she decided she couldn't take anymore, she just let go.

I did the best I could with you, Chloe. It was an honor being your person and your staff. I hope you have sunshine and warm fuzzy blankets and grass to roll in. Thank you for giving so much of yourself to us and for filling our lives with joy. We will never forget you.

Thursday, February 05, 2015

Fighting Inertia

I hate this.

I've gained a few pounds. I've lost some of my lung strength. I haven't been doing real cardio work in four or five months. I fell off the wagon.

I don't eat well. I don't pay as much attention to portion size as I should. I eat too much dessert when I eat it, and I nibble on mindless crap like tortilla chips.

The worst thing about falling off the wagon is that you suddenly forget you were on a wagon. Living healthy is challenging, but living sloppy is not. It's easy. You stop caring, and it's easy to keep not caring.

But I'm tired all the time, and I hate that.

I get winded too easily, and I hate that.

I could just sleep more. But I don't want to do that. I want to get myself back together.

I'm going to start chipping away on my health. A little bit at a time.

I have the equipment, I just don't use it. A situp bench. An elliptical machine. Dumbbells.

Every night, I can do a little something.

Thirty sit-ups.

Thirty push-ups.

Ten minutes on the elliptical.

Every night, I can do something.

And it's going to get easier. Thirty sit-ups will become forty-five, and then sixty, and them maybe a hundred.

Ten minutes on the elliptical will become thirty.

I'm going to get myself back together. I hate looking like this right now. I'm going to change it.