I am so lucky. I have two beautiful boys. One of them, J, you've heard about. "The Boy" is five, has autism, and often sets the tone for the house. He's hyper and loud and funny. You've heard all about his crazy hijinks.
But he's not the only one. My 10 year-old, N, is the unsung hero of the house. He's had his room trashed, his homework ripped up, and his sleep interrupted by his brother. He rarely has both parents in attendance at baseball games and scouting events because one of us has to watch the boy. He's had to leave playgrounds and parties early because of meltdowns that weren't his own. He's given up his favorite shirts and hats because the boy wanted them so badly.
He didn't sign up for this, but he doesn't complain too much.
When we're out at the beach or the playground, he runs interference between his brother and other kids. At the lake, he warns newcomers to the dock.
"This is my brother. He likes to push people into the water. He doesn't mean anything by it. Just say 'quiet hands' and he should leave you alone."
He's a master of redirection. At the dock, for instance, N realized that what J really wanted was to hear a scream and see a splash. So, with his friends, he made a game of it.
"Use your words, J. Do you want me to jump in?"
"Yes!"
And N and his friends would do screaming cannonballs into the water, and the boy would laugh delightedly.
Those are the good days. On bad days, nothing works and we go home.
My older son is the de facto Autism Ambassador to the neighborhood. He takes it in stride.
"Why does your brother make those noises?"
"He has autism. It just means he's happy."
"Why does your brother do that thing with his hands?"
"He does that when he's excited."
He's also fiercely protective.
"Dude, your brother is weird."
"Yeah? You're weird, too. He has autism. What's your excuse?"
He's so good at this, but he's just a kid. N has some attentional issues himself, and often does some pretty boneheaded things. We try not to freak out when this happens. "Just think before you do something, pal. I need you to think," is a common refrain in our house. We don't want to put too much pressure on him. When he leaves his saxophone on the bus, I don't say what I'm thinking. I don't yell, "Get it together, man! You are our only hope! You will have power of attorney over all of us one day! The fate of this family is in your hands!"
That's a bit too much for a 5th grader.
We try to make sure that he feels special, too. The whole family turns out for his school concerts--grandparents, great-grandparents, aunts and uncles. He has a rather loud cheering section at his games. My husband and I also take him out to movies without his brother.
I worry that it's not enough. Can I really say that taking him to Iron Man 3 makes up for the fact that every restaurant decision is based on whether or not there are gluten-free options? Or that a secret ice cream cone after a baseball game compensates for the thousands of times I will drag the poor kid to the zoo this summer?
I worry that I'm screwing up my first born. But then he'll say something like, "Mom, if being a major league baseball player doesn't work out, I think I'll be an occupational therapist." And then I feel better.
For a little while.
Saturday, May 25, 2013
Wednesday, May 22, 2013
Whatever Keeps You Off the Front Page: "Coping" with Autism
Last summer, after a particularly rough evening involving screaming and kicking and a soupçon of fecal smearing for good measure, I grabbed a bottle of rum and went out to my kids' swingset. I pulled out my phone and texted my best buddy, Deb.
Me: "Dude. I'm getting drunk on the boys' swingset."
Deb: "Whatever keeps you off the front page."
Debbie's wise like that.
It's good advice. I've recently become friendly with a mom whose son was just diagnosed. She's in the "Holy Shit" phase of all of this. She's reeling from the news and dealing with family members who are in denial. She asked me to meet her for a drink because she mistakenly believes that I've got my shit together. I do not have my shit together. (The shit is smeared everywhere. N'yuck, n'yuck.) But talking to her got me thinking about what's keeping me from losing my ever-loving mind, at least temporarily.
So, in no particular order:
1. Exercise. (Don't get excited. I'm not going to preach.) I'm not remotely athletic, but about a year before the diagnosis, I did my first triathlon. That gave me such a boost of confidence, that I figured I was up to any challenge--even autism. (Granted, I had no effin' idea how hard it was going to be.) I still race in the summer, though I don't have time to train like I used to. But I do meet my friend Dana at kickboxing once a week. It's very satisfying to beat the crap out of a bag for an hour, and it makes me feel badass--probably because there's nothing punching back.
Exercise is great and gets your endorphins going, but before you start thinking I'm well-adjusted, let me tell you about something I like even more:
2. Alcohol. I'm not being remotely ironic here. I medicate with chardonnay. Cheap chardonnay.
3. Friends. My oldest girlfriends are probably the only non-ASD parents that I can be totally open with. They are awesome at not pitying me--probably because they know what a jerk I am. I am awesome at not envying them--probably because I know how fucked up they really are. (I say this will all the affection in the world.) We don't get together nearly often enough, but even the occasional weekend at the shore is an effin' tonic for my nerves.
4. My husband. I know. I'm lucky. Though I have to say, sometimes we can't vent to each other. There have been times that he's wanted to talk about his feelings and frustrations, and I've cut him off because I can't take in any more. I've reached critical mass. I'm soaking in it. But I have a partner in this madness. And he can cook.
5. Downton Abbey. At least I don't have to worry about the pressures of maintaining a castle that's been in the family for generations. We live in a three bedroom ranch that was built in 1981. However, it does need new windows, so in that way I can relate to Lord Grantham.
Holy crap. What was that? Did I mention the alcohol? Do you see I wasn't joking?
5. This blog. You. All of this wonderful networking and communication has made me feel like I'm not the only one. Sometimes I'll read a blog or one of your comments and be amazed because someone has read my mind. It's the best thing I've done for myself in a long time.
I think that's the key. We have to have something for ourselves. We can't just be ASD parents all the time. We can be writers or artists or mediocre athletes...whatever it takes to keep us off the front page.
Me: "Dude. I'm getting drunk on the boys' swingset."
Deb: "Whatever keeps you off the front page."
Debbie's wise like that.
It's good advice. I've recently become friendly with a mom whose son was just diagnosed. She's in the "Holy Shit" phase of all of this. She's reeling from the news and dealing with family members who are in denial. She asked me to meet her for a drink because she mistakenly believes that I've got my shit together. I do not have my shit together. (The shit is smeared everywhere. N'yuck, n'yuck.) But talking to her got me thinking about what's keeping me from losing my ever-loving mind, at least temporarily.
So, in no particular order:
1. Exercise. (Don't get excited. I'm not going to preach.) I'm not remotely athletic, but about a year before the diagnosis, I did my first triathlon. That gave me such a boost of confidence, that I figured I was up to any challenge--even autism. (Granted, I had no effin' idea how hard it was going to be.) I still race in the summer, though I don't have time to train like I used to. But I do meet my friend Dana at kickboxing once a week. It's very satisfying to beat the crap out of a bag for an hour, and it makes me feel badass--probably because there's nothing punching back.
Exercise is great and gets your endorphins going, but before you start thinking I'm well-adjusted, let me tell you about something I like even more:
2. Alcohol. I'm not being remotely ironic here. I medicate with chardonnay. Cheap chardonnay.
3. Friends. My oldest girlfriends are probably the only non-ASD parents that I can be totally open with. They are awesome at not pitying me--probably because they know what a jerk I am. I am awesome at not envying them--probably because I know how fucked up they really are. (I say this will all the affection in the world.) We don't get together nearly often enough, but even the occasional weekend at the shore is an effin' tonic for my nerves.
4. My husband. I know. I'm lucky. Though I have to say, sometimes we can't vent to each other. There have been times that he's wanted to talk about his feelings and frustrations, and I've cut him off because I can't take in any more. I've reached critical mass. I'm soaking in it. But I have a partner in this madness. And he can cook.
5. Downton Abbey. At least I don't have to worry about the pressures of maintaining a castle that's been in the family for generations. We live in a three bedroom ranch that was built in 1981. However, it does need new windows, so in that way I can relate to Lord Grantham.
Holy crap. What was that? Did I mention the alcohol? Do you see I wasn't joking?
5. This blog. You. All of this wonderful networking and communication has made me feel like I'm not the only one. Sometimes I'll read a blog or one of your comments and be amazed because someone has read my mind. It's the best thing I've done for myself in a long time.
I think that's the key. We have to have something for ourselves. We can't just be ASD parents all the time. We can be writers or artists or mediocre athletes...whatever it takes to keep us off the front page.
Monday, May 20, 2013
For the Families of Mikaela, Drew, and Owen.
When my son was two and a half, he "got out." He was playing in the fenced-in yard with our dog when the phone range. I knew the gate was locked, so I ducked in to answer the phone. The phone wasn't where it usually was, so I had to look for it a bit. After several rings, I answered it. It was a telemarketer. I hung up and went back outside.
I wasn't in the house a minute, but it was long enough. The boy and the dog were gone.
My heart stopped. He wasn't playing in the cars, he wasn't in the driveway. Which way did he go? Panicked that I would lose time, I jumped into the car and went up the road, screaming his name with the windows down. I pulled up along side some guys working on a truck.
"Please," I begged. "Have you seen a little boy?"
"He went that way," one of them said, pointing up the road.
Sure enough, there was my boy marching purposely in the direction of the lake.
The fucking lake.
I caught up with him and squeezed him so hard. Ohmygodohmygodohmygod. What if?
To this day, I still don't know how he got out. My husband was furious that people saw him walking by himself and nobody stopped him. But if they had stopped him, then what? He couldn't say his name or where he lived. What could we do to keep him safe?
I aged about 20 years that day. We all have stories such as these. These close-calls. These luckiest-days.
We have ASD families around us who, through no fault of their own, weren't so lucky. They are grieving and living our worst nightmares. I wouldn't know what to say to them if I saw them. Nothing anyone could say could make any sense of these tragedies. My heart hurts.
We can't bring back Mikaela or Owen or Drew. But, for what it's worth, we can stand by their families. We all try so hard every day to keep our kids safe. These parents were just like us. They had locks and alarms and ID tags and everything else that we have to try to keep our kids out of trouble. They loved their children as fiercely as we love our own, and worried themselves sick, just as we do. But sometimes, despite our best efforts, tragedy strikes anyway.
I want them to know that we know they're good parents. That it wasn't their fault. As our beautiful children walk fearlessly toward the water, we do everything we can to stop them.
They did everything they could. We know this.
I wasn't in the house a minute, but it was long enough. The boy and the dog were gone.
My heart stopped. He wasn't playing in the cars, he wasn't in the driveway. Which way did he go? Panicked that I would lose time, I jumped into the car and went up the road, screaming his name with the windows down. I pulled up along side some guys working on a truck.
"Please," I begged. "Have you seen a little boy?"
"He went that way," one of them said, pointing up the road.
Sure enough, there was my boy marching purposely in the direction of the lake.
The fucking lake.
I caught up with him and squeezed him so hard. Ohmygodohmygodohmygod. What if?
To this day, I still don't know how he got out. My husband was furious that people saw him walking by himself and nobody stopped him. But if they had stopped him, then what? He couldn't say his name or where he lived. What could we do to keep him safe?
I aged about 20 years that day. We all have stories such as these. These close-calls. These luckiest-days.
We have ASD families around us who, through no fault of their own, weren't so lucky. They are grieving and living our worst nightmares. I wouldn't know what to say to them if I saw them. Nothing anyone could say could make any sense of these tragedies. My heart hurts.
We can't bring back Mikaela or Owen or Drew. But, for what it's worth, we can stand by their families. We all try so hard every day to keep our kids safe. These parents were just like us. They had locks and alarms and ID tags and everything else that we have to try to keep our kids out of trouble. They loved their children as fiercely as we love our own, and worried themselves sick, just as we do. But sometimes, despite our best efforts, tragedy strikes anyway.
I want them to know that we know they're good parents. That it wasn't their fault. As our beautiful children walk fearlessly toward the water, we do everything we can to stop them.
They did everything they could. We know this.
Monday, May 13, 2013
Go the Eff to Sleep: Stuff We've Tried That Worked for a Little While
We're tweaking his meds again. He's not sleeping. It's a cycle. We see his developmental pediatrician--a wonderful woman who actually listens and understands that three hours of sleep a night is not sustainable--and she tries to fix it for us. She changes up his meds and he sleeps well for a couple of weeks. Then we're back to the midnight madness. This time, she's ordered a EEG and a sleep study so we can get a better idea of what the eff is going on.
We've tried it all. Here's a list, in no particular order:
1. Melatonin as a verb. It is a verb in our house. An active verb: Did you melatone him? A passive verb: Has he been melatoned? The answer is yes, and it doesn't friggin' matter. It does nothing for him anymore. (Knocks me on my ass, though.)
2. Meds. Clonidine, Tenex, Risperdal. As I mentioned before, they work for a little while and then quit. My husband and I try to squeeze all our movie-watching into those few days.
3. Sleep CDs. We once burned out a cd player playing Sleeping Through the Rain on repeat all night for months on end. Don't think the boy noticed, but it worked really well on me, which is why I will never go to one of those hypnotist shows. I'd be that crazy bitch on stage clucking like a chicken and then denying it later.
4. Driving around in the middle of the night. When the boy was still light enough to carry from the car without waking, I'd take him on drives. I once came upon an animal convention in the middle of the road. I swear, there was a deer, a raccoon, a possum, and a rabbit, and I think they were discussing something important before I interrupted them.
5. Epsom salts baths. This is a cheap solution, and if he drinks the bathwater, it's a natural laxative. Our local store stopped stocking the plain kind, so we tried the chamomile and lavender salts, which made the boy smell like my Aunt Agnes.
6. My nightshirts. For two glorious nights in a row, the boy brought one of my nightshirts to bed with him and slept all the way through. He likes my nightshirts because they all have cartoon characters on them. (How does my husband resist me? I have no idea.) I think he was reassured by the Mommy smell. For two nights at least.
7. Videos. Good Night, Gorilla. Good Night, Moon. Raffi. You name it, we've tried it.
8. Grandma's House. Every once in a while, my in-laws will take pity on us, and take our kids overnight. (Those nights are the best because we sleep like it's our job. We pull down the shades, take some Tylenol PM, and it's Enter Sandman. We take this opportunity seriously.) Then we find out the next day that the boy slept just fine. I'm convinced my mother-in-law is some kind of white witch. Or maybe it's their Tempurpedic mattress.
So...whatcha got?
 |
| I'm going to stab my eyes out with these knitting needles. |
We've tried it all. Here's a list, in no particular order:
1. Melatonin as a verb. It is a verb in our house. An active verb: Did you melatone him? A passive verb: Has he been melatoned? The answer is yes, and it doesn't friggin' matter. It does nothing for him anymore. (Knocks me on my ass, though.)
2. Meds. Clonidine, Tenex, Risperdal. As I mentioned before, they work for a little while and then quit. My husband and I try to squeeze all our movie-watching into those few days.
3. Sleep CDs. We once burned out a cd player playing Sleeping Through the Rain on repeat all night for months on end. Don't think the boy noticed, but it worked really well on me, which is why I will never go to one of those hypnotist shows. I'd be that crazy bitch on stage clucking like a chicken and then denying it later.
4. Driving around in the middle of the night. When the boy was still light enough to carry from the car without waking, I'd take him on drives. I once came upon an animal convention in the middle of the road. I swear, there was a deer, a raccoon, a possum, and a rabbit, and I think they were discussing something important before I interrupted them.
5. Epsom salts baths. This is a cheap solution, and if he drinks the bathwater, it's a natural laxative. Our local store stopped stocking the plain kind, so we tried the chamomile and lavender salts, which made the boy smell like my Aunt Agnes.
6. My nightshirts. For two glorious nights in a row, the boy brought one of my nightshirts to bed with him and slept all the way through. He likes my nightshirts because they all have cartoon characters on them. (How does my husband resist me? I have no idea.) I think he was reassured by the Mommy smell. For two nights at least.
7. Videos. Good Night, Gorilla. Good Night, Moon. Raffi. You name it, we've tried it.
8. Grandma's House. Every once in a while, my in-laws will take pity on us, and take our kids overnight. (Those nights are the best because we sleep like it's our job. We pull down the shades, take some Tylenol PM, and it's Enter Sandman. We take this opportunity seriously.) Then we find out the next day that the boy slept just fine. I'm convinced my mother-in-law is some kind of white witch. Or maybe it's their Tempurpedic mattress.
So...whatcha got?
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