We've been dealing with some "behaviors" of late. (That's polite autism-speak for "my kid has been an uncooperative asshole.") I told the school that I wanted a behavior plan. I was told that he didn't need one, presumably because he hadn't started any fires. The behaviorist was happy with the compliance trials. The behaviorist didn't have to live or work with my son on a daily basis.
For those of you who are unfamiliar, a compliance trial rewards tokens to kids for doing what they're told. When they get enough tokens, they get a special reward. The idea is to get them back on track, but my boy works around it. It goes like this:
Boy: I want a cookie!
Aide: You need to finish writing your letters first.
(Boy throws himself on floor in boneless, jellyfish fashion and refuses to do anything.)
Aide: Touch your nose! (Boy touches his nose.) Good touching your nose! (Puts token on board.) Touch your mouth! (Boy touches his mouth.) Good touching your mouth! (Puts another token on board.) Okay, sit up and you can have your cookie.
Boy: Thank you. (Eats cookie, then throws himself on floor in boneless, jellyfish fashion all over again.)
When I brought this up at the IEP meeting, that he's figured out how to manipulate the trials, the behaviorist said, "Well, I don't know if intellectually he understands what he is doing."
If I had been drinking my water, I would've done a spit-take right across the table.
My boy knows exactly what he's doing. He is a military genius. He is a criminal mastermind. He is an effin' Sith Lord.
When there is something he wants that is closely guarded--cookies, for instance--he creates a diversion. I'll be in the kitchen working on dinner, and he'll ask for a snack. I'll say, "No, it's almost dinner time." Then he will rage. Or he won't. It's when he doesn't rage that I should get my guard up, because he's about to eff with me big time. He quietly backs out of the kitchen, and I, relieved that there was no hysterical scene, foolishly go back to food preparation.
That's when I hear the shower.
He's turned it on full blast and aimed it out of the tub, onto the bathroom floor. I go running in.
"What are you doing?! STOP IT! YOU'LL FLOOD THE HOUSE!" And then, while I'm mopping and cursing, he slips into the kitchen and takes whatever he wants.
He's a master tactician. Some of his plans I haven't even figured out yet.
"How did you do that? How did you DO that?!" Then I just step back and take a deep breath and whistle through my teeth. You've got to admit, he's got a mind for strategy.
In the middle of the night, he's pretended to fall back to sleep so I would get back in bed and not thwart his plans to paint the kitchen floor with dish soap. Or he'll say, "Go to sleep, please, Mommy," and I'll know he's up to something, but I don't know what.
And now he's learned to pick locks.
I'm not even kidding. We hid the keys to the kitchen locks, so he used my car keys to open them. He helped himself to a huge serving of chocolate ice cream on the couch. So my husband locked ALL the keys in the closet and then hung the closet key around his neck.
So the boy punched out the accordion sides of the air conditioner, and while we were fussing with duct tape to fix it, he picked the freezer lock with a pair of scissors and helped himself to more ice cream.
"How did you DO that?!" Then I tried to unlock the freezer with a pair of scissors, but I couldn't figure it out.
He's doing all of this without any help. Alexander the Great, Napoleon, and Stonewall Jackson all commanded huge armies. They had underlings. My kid is pulling this off all by himself. I thank God I didn't have twins.
So, Behaviorist Lady. Never underestimate my kid. He's not one of Skinner's rats pushing on a lever to get a pellet. He goes for the full-on mind-fuck, and he's going to tear your little plan apart.
If I didn't need it to work so badly, I'd almost find it entertaining.
Thursday, June 26, 2014
Monday, June 9, 2014
Autism and the Art of Defenestration
Defenestrate (dēˈfenəˌstrāt/) v. To throw out a window
I love this word. I believe I use it more often than the general population does. I teach middle school, and in my work setting, it's a remarkably handy word.
"Put the cell phone away, or I will be forced to defenestrate it."
"Huh?"
"Huh?"
And then I explain. Defenestrate provides its own teachable moment. The word comes from fenêtre, which is the French word for window. The Latin prefix "de" means "out of." This beautiful little word allows me to teach vocabulary--covering affixes and the origin of the English language, beginning with the ancients and up through the Norman Invasion--all while threatening my students in a memorable way.
Can you use it in a sentence?
The boy defenestrated his shoes.
He'd done it again.
"Can you go look?" my husband asked. No problem! I didn't mind. I had an audiobook in the car, anyway.
I started back down the road, retracing the route my husband had taken. I drove slowly and scanned the road for the shoes. My eyes were zipping back and forth so quickly, I felt like one of those Cylons from Battlestar Galactica. (The old ones, not the updated ones.)
It is 6.7 miles from my house to the Dairy Queen--6.7 miles of winding mountain roads with no shoulder, let alone a sidewalk. But I did not give up hope. Three miles in, and I saw one sneaker in the middle of the road! Success! I had to drive down the road a bit to find a spot to pull over. I ran back up the road, waited for a car to pass, and then snatched up the sneaker. I figured the other one was probably close by, so I paced up and down the road and checked the bushes and the ditches for the shoe. It occurred to me that I should have changed into running shoes myself, instead of hiking along in my work heels. Several motorists stopped to see if I was all right. See, unless you're in workout gear, you do not just walk this road.
On my way back to the car, I spotted his sock. Yes! How did I know it was his sock? Mother's intuition. Plus, it was still warm. I swear I was like an outback animal tracker.
I continued down the road, where I saw another sock...and yes, it was his. Excellent. I was making progress, and I'd only been gone for an hour. Two socks, one shoe. Back in the car, continued down the road. What are those lights? Uh, oh. Police. Apparently, there was a fender bender at the intersection where we'd turned right after we'd left Dairy Queen. I hoped to God it wasn't caused by a flying shoe...
I banged a U-ey (that's Jersey-speak for a slightly illegal U-turn) and headed back from whence I had come, still searching the road, when my Cylon-sensors picked up on something familiar. I pulled over. It wasn't black like the shoe, but yellow--my husband's golf hat. He didn't even realize it was missing.
Two socks, one shoe, one hat.
Text from my husband: "Give up and come home. He's melting down."
Sigh.
I crept home, hoping to find that other shoe, but...nothing. I was so disappointed. I felt defeated by this sneaker. That was a week ago, and I'm still looking. This shit has gotten personal. I'm obsessed with finding this effin' shoe. It will be my downfall. I'm Captain Ahab and this damned sneaker is my Moby Dick. Even my 11 year-old has tried to get me to give up.
"Mom, it's been a week. It's rained four times and the mowers went by. Let it go. The shoe is gone."
I guess you've got to be pretty effed up when a sixth grader becomes your voice of reason. Maybe one last search.
Thus, I give up my spear!
Here's where I'm going with this: Have you ever seen a shoe on the side of the road and wondered how it got there? Well, wonder no more. It was my kid. Mystery solved.
This is a new thing. It started a couple of weeks ago, as he rode home in Grandma's car. He took off his shoes and socks and threw them out the window. She didn't notice. Fortunately, my husband was following them in his car, and pulled over to get the shoes. We had a good laugh about it and remarked how lucky we were that my husband saw what happened and was able to rescue the shoes!
Alas, our luck changed. The other day, we met at Dairy Queen after work. The boy was in raptures over his little cup of ice cream. I had more errands to run, so my husband took him home. When I got home, I found my frantic husband tearing the car apart while the boy stood barefoot in the driveway.
 |
| Lonely shoe seeks mate. |
He'd done it again.
"Can you go look?" my husband asked. No problem! I didn't mind. I had an audiobook in the car, anyway.
I started back down the road, retracing the route my husband had taken. I drove slowly and scanned the road for the shoes. My eyes were zipping back and forth so quickly, I felt like one of those Cylons from Battlestar Galactica. (The old ones, not the updated ones.)
It is 6.7 miles from my house to the Dairy Queen--6.7 miles of winding mountain roads with no shoulder, let alone a sidewalk. But I did not give up hope. Three miles in, and I saw one sneaker in the middle of the road! Success! I had to drive down the road a bit to find a spot to pull over. I ran back up the road, waited for a car to pass, and then snatched up the sneaker. I figured the other one was probably close by, so I paced up and down the road and checked the bushes and the ditches for the shoe. It occurred to me that I should have changed into running shoes myself, instead of hiking along in my work heels. Several motorists stopped to see if I was all right. See, unless you're in workout gear, you do not just walk this road.
On my way back to the car, I spotted his sock. Yes! How did I know it was his sock? Mother's intuition. Plus, it was still warm. I swear I was like an outback animal tracker.
I continued down the road, where I saw another sock...and yes, it was his. Excellent. I was making progress, and I'd only been gone for an hour. Two socks, one shoe. Back in the car, continued down the road. What are those lights? Uh, oh. Police. Apparently, there was a fender bender at the intersection where we'd turned right after we'd left Dairy Queen. I hoped to God it wasn't caused by a flying shoe...
I banged a U-ey (that's Jersey-speak for a slightly illegal U-turn) and headed back from whence I had come, still searching the road, when my Cylon-sensors picked up on something familiar. I pulled over. It wasn't black like the shoe, but yellow--my husband's golf hat. He didn't even realize it was missing.
Two socks, one shoe, one hat.
Text from my husband: "Give up and come home. He's melting down."
Sigh.
I crept home, hoping to find that other shoe, but...nothing. I was so disappointed. I felt defeated by this sneaker. That was a week ago, and I'm still looking. This shit has gotten personal. I'm obsessed with finding this effin' shoe. It will be my downfall. I'm Captain Ahab and this damned sneaker is my Moby Dick. Even my 11 year-old has tried to get me to give up.
"Mom, it's been a week. It's rained four times and the mowers went by. Let it go. The shoe is gone."
I guess you've got to be pretty effed up when a sixth grader becomes your voice of reason. Maybe one last search.
Thus, I give up my spear!
Wednesday, May 21, 2014
Haircuts Can Suck It: Our Flowbee Experience
As a newbie, I didn't understand what a big effin' deal it was to give a spectrumy kid a haircut. My 20 month-old had curly little ringlets that didn't get in the way of anything, and I was too busy researching how to "fix" my kid when I came across a "miraculous" video of a little autistic boy sitting patiently as his hair was combed and trimmed.
I was unimpressed.
Did I mention I was a newbie? I was all, A haircut? Are you kidding? I want my boy to go to college. I have higher aspirations than haircuts!
I was an ass, but I learned soon enough.
In the years since, we caused so many barbershop spectacles. We were the Traveling Circus of Snot. We tried bringing toys and treats. We tried seatbelts on the chair. We tried letting him stand during his haircut. We even experimented with different times of day to see if that made a difference. The barber, a wonderful woman whose best friend's kids are on the spectrum, tried everything in her bag of tricks. He raged and jumped around and she ended up cutting her own finger. We left a big tip and with half his head trimmed. And I don't even want to talk about the time I took him to one of those kiddie salons, with all the well-behaved toddlers and their staring moms.
So Grandma took over. I may have mentioned that my mother-in-law is some kind of white witch who can get him to do amazing things, like sleep. For a little while, she was able to trim his hair enough that it was out of his eyes. So that worked...until it didn't. The hair situation was getting out of control. His hair no longer curls, so when it’s long, it’s loooong. It was in his eyes and sticking out in all directions…and he would barely let us brush it.
On my Facebook page, I jokingly suggested that I should just buy a Flowbee. Remember the Flowbee? Back in the ‘90s, there were these hilarious commercials of this haircutting device that attached to a vacuum hose. The hair would be sucked up into the vacuum and then trimmed and sucked away! We used to laugh and laugh at the commercial. Who would actually buy this? Autism moms, that’s who. I didn’t know they still made them, but some readers sent me Amazon links, and swore it was the only way they could cut their kid’s hair. Really? But, I reasoned, the boy hates haircuts and loves vacuums, so why not?
"Eff it," I said to my husband. "I'm buying a Flowbee."
When the Flowbee arrived, we were giggly and excited. Who buys a Flowbee? WE DO! It was like the last thread that bound us to normalcy was cut. We were those people. We giddily assembled it and connected it to the vacuum. Damn, that thing is loud.
It took some time to figure out which was the right attachment, so we did a lot of plain ole vacuuming of the kid's hair. And then finally, we heard it--Buzz-zap! It cut his hair! The boy sat on the floor and watched his hair swirl in the vacuum. Zap! We trimmed his bangs. Now with the short bangs and longish hair, he looked like a medieval page...or Mickey Dolenz of the Monkees. Cool!
Then he decided he'd had enough and ran away.
"Come back, Mickey Dolenz!" I screamed.
I managed to wrestle the boy back to the vacuum and tried to engage him in the wonder of swirling hair. He lost his fascination with the Flowbee, but because there are no dangerous clippers, I was able to tickle him (and tackle him) while my husband vacuumed his head.
And how was the haircut? Well, it looked like someone trimmed his hair with a vacuum cleaner, which was no worse than any other haircut he's gotten. So we're cool with that.
Thank you, Flowbee!
I was unimpressed.
Did I mention I was a newbie? I was all, A haircut? Are you kidding? I want my boy to go to college. I have higher aspirations than haircuts!
I was an ass, but I learned soon enough.
In the years since, we caused so many barbershop spectacles. We were the Traveling Circus of Snot. We tried bringing toys and treats. We tried seatbelts on the chair. We tried letting him stand during his haircut. We even experimented with different times of day to see if that made a difference. The barber, a wonderful woman whose best friend's kids are on the spectrum, tried everything in her bag of tricks. He raged and jumped around and she ended up cutting her own finger. We left a big tip and with half his head trimmed. And I don't even want to talk about the time I took him to one of those kiddie salons, with all the well-behaved toddlers and their staring moms.
So Grandma took over. I may have mentioned that my mother-in-law is some kind of white witch who can get him to do amazing things, like sleep. For a little while, she was able to trim his hair enough that it was out of his eyes. So that worked...until it didn't. The hair situation was getting out of control. His hair no longer curls, so when it’s long, it’s loooong. It was in his eyes and sticking out in all directions…and he would barely let us brush it.
On my Facebook page, I jokingly suggested that I should just buy a Flowbee. Remember the Flowbee? Back in the ‘90s, there were these hilarious commercials of this haircutting device that attached to a vacuum hose. The hair would be sucked up into the vacuum and then trimmed and sucked away! We used to laugh and laugh at the commercial. Who would actually buy this? Autism moms, that’s who. I didn’t know they still made them, but some readers sent me Amazon links, and swore it was the only way they could cut their kid’s hair. Really? But, I reasoned, the boy hates haircuts and loves vacuums, so why not?
"Eff it," I said to my husband. "I'm buying a Flowbee."
When the Flowbee arrived, we were giggly and excited. Who buys a Flowbee? WE DO! It was like the last thread that bound us to normalcy was cut. We were those people. We giddily assembled it and connected it to the vacuum. Damn, that thing is loud.
 |
| Not the weirdest thing I've done as a parent. |
It took some time to figure out which was the right attachment, so we did a lot of plain ole vacuuming of the kid's hair. And then finally, we heard it--Buzz-zap! It cut his hair! The boy sat on the floor and watched his hair swirl in the vacuum. Zap! We trimmed his bangs. Now with the short bangs and longish hair, he looked like a medieval page...or Mickey Dolenz of the Monkees. Cool!
Then he decided he'd had enough and ran away.
"Come back, Mickey Dolenz!" I screamed.
I managed to wrestle the boy back to the vacuum and tried to engage him in the wonder of swirling hair. He lost his fascination with the Flowbee, but because there are no dangerous clippers, I was able to tickle him (and tackle him) while my husband vacuumed his head.
And how was the haircut? Well, it looked like someone trimmed his hair with a vacuum cleaner, which was no worse than any other haircut he's gotten. So we're cool with that.
Thank you, Flowbee!
Saturday, April 26, 2014
Fakebooking and Lies by Omission
This is my Facebook status: My son got the game ball! I'm such a proud mom! :)
And it's true. Today was opening day for Little League and my older son's first time in the "Majors." He pitched--one inning was a 1,2,3--and had a great offensive game as well. He crushed a line-drive double off a smack-talking pitcher, but rather than talk smack back, he just nodded and smiled. He stole three bases. They won.
And I missed all but the last half inning.
My ASD kid, The Boy, had an epic meltdown before the game even started. Correction: It wasn't a meltdown. It was a rage. He raged like I have never seen him rage. And he hurt me and almost caused a car accident.
Before the game, the boy asked for ice cream and to go home. I thought, OK, I'll take him for some ice cream and we'll be back in time for the game. I got him into the car and drove in the direction of the ice cream shop. And for some reason unbeknownst to me, the boy utterly lost his shit.
I don't know what triggered it, but he started screaming. He took off his glasses--new ones we had just picked up this morning to replace the ones he broke last week--and broke them in half and threw them at me. I pulled over to see what was the matter, and he unbuckled his seatbelt and hit me.
No ice cream, then. I re-buckled his seatbelt and drove home.
I don't know if I can adequately describe the trip home. "Nightmarish," "terrifying," "horrific," and any other drama queen words would be an understatement. He scratched at my face. He pulled out chunks of my hair. He kicked me in the head. He screamed and raged and punched and bit and completely lost control of himself. I kept having to pull over so I could wrench his fingers from my hair or his teeth from my arm. Both of us were sobbing. Who was this child?
We finally made it home and I ran him a bath to calm him down. I sat on the bathroom counter and emailed his doctor from my phone. I'm not sure what I wrote, but I'm sure it was an incoherent, blubbering mess. I sent my husband a text basically telling him that I hated his guts because he got to coach Little League and do typical parent things and I got to get the shit kicked out of me. (This was totally unfair of me. My husband is super-involved with both of our boys. I was feeling sorry for myself.) I cried a little bit.
Something you should know about me. We're four years into this "journey" (and you know what? Fuck that term, "journey." I hate it.) and I've hardly ever let myself cry. We got the diagnosis and I cried for about 30 seconds and got to work. I cried the first time he hit someone. Oh, and I cry for happy things and every damn commercial featuring a dog. But for myself? Not so much.
So I texted my husband and asked how Big Bro was doing. Turns out, he was doing great. He was pitching great, and I was missing it. And that's when I really broke down into big ugly tears with loud, heaving, grieving-whale sobs. My kid pitched a 1-2-3 inning and I didn't get to see it.
Then I got a second text that he got hit by a pitch.
"Get out of the tub," I said to the boy. "We're going back to the field."
We got back in time to see the last three outs, which my son pitched really well. The smack-talker, hoping to unnerve him, yelled "FAIL!" just as he released the last pitch. It did the little shit no good. The throw was a strike and the game was over. The final score was 16-4 and the head coach gave Big Bro the game ball.
So you see, my son did get the game ball and I am a proud mom.
I just didn't tell them the rest of it.
Now if I post the proud mommy moments, but don't share the nasty stuff, doesn't it stand to reason that other people do the same? Fakebooking is like farting or picking a wedgie--everyone thinks they're the only ones who do it.
And by the way--next year, I'm attending coaching clinics. I will assistant coach and my husband will wrangle. 'Cause eff it.
And it's true. Today was opening day for Little League and my older son's first time in the "Majors." He pitched--one inning was a 1,2,3--and had a great offensive game as well. He crushed a line-drive double off a smack-talking pitcher, but rather than talk smack back, he just nodded and smiled. He stole three bases. They won.
And I missed all but the last half inning.
My ASD kid, The Boy, had an epic meltdown before the game even started. Correction: It wasn't a meltdown. It was a rage. He raged like I have never seen him rage. And he hurt me and almost caused a car accident.
Before the game, the boy asked for ice cream and to go home. I thought, OK, I'll take him for some ice cream and we'll be back in time for the game. I got him into the car and drove in the direction of the ice cream shop. And for some reason unbeknownst to me, the boy utterly lost his shit.
I don't know what triggered it, but he started screaming. He took off his glasses--new ones we had just picked up this morning to replace the ones he broke last week--and broke them in half and threw them at me. I pulled over to see what was the matter, and he unbuckled his seatbelt and hit me.
No ice cream, then. I re-buckled his seatbelt and drove home.
I don't know if I can adequately describe the trip home. "Nightmarish," "terrifying," "horrific," and any other drama queen words would be an understatement. He scratched at my face. He pulled out chunks of my hair. He kicked me in the head. He screamed and raged and punched and bit and completely lost control of himself. I kept having to pull over so I could wrench his fingers from my hair or his teeth from my arm. Both of us were sobbing. Who was this child?
We finally made it home and I ran him a bath to calm him down. I sat on the bathroom counter and emailed his doctor from my phone. I'm not sure what I wrote, but I'm sure it was an incoherent, blubbering mess. I sent my husband a text basically telling him that I hated his guts because he got to coach Little League and do typical parent things and I got to get the shit kicked out of me. (This was totally unfair of me. My husband is super-involved with both of our boys. I was feeling sorry for myself.) I cried a little bit.
Something you should know about me. We're four years into this "journey" (and you know what? Fuck that term, "journey." I hate it.) and I've hardly ever let myself cry. We got the diagnosis and I cried for about 30 seconds and got to work. I cried the first time he hit someone. Oh, and I cry for happy things and every damn commercial featuring a dog. But for myself? Not so much.
So I texted my husband and asked how Big Bro was doing. Turns out, he was doing great. He was pitching great, and I was missing it. And that's when I really broke down into big ugly tears with loud, heaving, grieving-whale sobs. My kid pitched a 1-2-3 inning and I didn't get to see it. Then I got a second text that he got hit by a pitch.
"Get out of the tub," I said to the boy. "We're going back to the field."
We got back in time to see the last three outs, which my son pitched really well. The smack-talker, hoping to unnerve him, yelled "FAIL!" just as he released the last pitch. It did the little shit no good. The throw was a strike and the game was over. The final score was 16-4 and the head coach gave Big Bro the game ball.
So you see, my son did get the game ball and I am a proud mom.
I just didn't tell them the rest of it.
Now if I post the proud mommy moments, but don't share the nasty stuff, doesn't it stand to reason that other people do the same? Fakebooking is like farting or picking a wedgie--everyone thinks they're the only ones who do it.
And by the way--next year, I'm attending coaching clinics. I will assistant coach and my husband will wrangle. 'Cause eff it.
Tuesday, April 15, 2014
Zen and the Art of Oversharing: How You and This Effin' Blog Saved Me
A year ago, I felt exhausted, pissed off, and alone.
The boy wasn't sleeping, he was having behavior problems at school, and some potty-training relapses. Every afternoon, I would anxiously open the communication book, silently praying for good news. My stomach would twist in a knot when there wasn't any. I spent my evenings cleaning poop, my nights in a groggy purgatory between sleeping and waking, and my days fueled with crazy amounts of caffeine. Our speech therapist broke up with us, our occupational therapist was out-of-network, and the bills were mounting. I was an angry, twitchy stress-ball.
And nobody had any idea.
Surrounded by well-meaning people who didn't understand our situation, I put on a brave face and acted like everything was fine. I was complimented about my "great attitude" and told that God must have chosen us for this special assignment.
"I don't know how you do it!" they'd say.
"I don't do it!" I wanted to shout. "I'm hanging on by a fucking thread and it's all I can do not to scream at you for your seven hours of sleep and your normal-people problems!"
Good, good people would give me books about Temple Grandin, and instead of feeling grateful, I wanted to throw them at their heads. You know, that's really great that she's this brilliant scientist/researcher/professor, but my kid can't wipe his ass, I'd think to myself. I wasn't ready for Temple Grandin. I still don't think I'm ready for Temple Grandin. (With all due respect to Dr. Grandin...but we're still in triage mode most of the time.)
Meanwhile, I had this secret little blog that I would write when I felt frustrated or worried and confused. I didn't show it to anyone. I wanted it to be a place where I could yell at the world without worrying that the world might yell back. I vented, but it did nothing to make me feel better.
Then one day, I read a post by Autism Daddy that sounded so familiar, so like my own feelings, that I took a risk and put a link to one of my posts in the comments. A stranger on the thread read it and messaged me to tell me that she liked what I wrote and felt the same way. She sent me a friend request. I accepted. This was the first time I'd ever accepted a request from someone I didn't know in real life, but as we exchanged short but important messages, I felt like I DID know her. (Yes, Amy. It's you!)
Then I discovered Autism with a Side of Fries, and that settled it. I had to "come out." Here was a woman who was somehow inside my head, and being a Jersey Girl, she even sounded like me! And she was telling her story and she was funny and honest and I thought, I bet that feels good. So I showed her my blog, and she showed Fry Nation, and the rest, as they say, is...
...Where the story really begins--when I found my people. When I found people who didn't wrinkle their noses and say, "Oh, really?" when I mentioned some simple term, like "fecal smearing." No nose-wrinkling here! Just head-nodding! Just, hell-yeah-me-too-poop-is-everywhere-but-what-can-ya-do-right?
I wrote about poop and people didn't act like I was pathetic. I wrote about sleeplessness and nobody suggested we try a "bedtime routine." I wrote about the full moon, and instead of telling me that I was being superstitious, people said, "My kid, too."
I realized that if you get enough of the right people together, our wildly stressful, insanely funny, batshit-crazy existence can seem kind of normal. Our normal.
It was the best feeling in the world. I finally found people who understood, and I'm so, so grateful.
Finding these friends hasn't fixed anything, but it's changed everything. My kid still has sleep problems. My kid still has behavioral issues. My kid still has ass-wiping difficulties. Autism isn't going anywhere...but now I'm not going at this alone.
How can I show my appreciation for all the support I've found this year? How can I tell you that you are more effective than a therapist and a helluva lot cheaper? I couldn't come up with a poem to express how much you all mean to me, so I'm going to leave you with the words of my favorite modern American philosopher:
There's not a word yet
For old friends who just met.
--Gonzo the Great
Peace.
The boy wasn't sleeping, he was having behavior problems at school, and some potty-training relapses. Every afternoon, I would anxiously open the communication book, silently praying for good news. My stomach would twist in a knot when there wasn't any. I spent my evenings cleaning poop, my nights in a groggy purgatory between sleeping and waking, and my days fueled with crazy amounts of caffeine. Our speech therapist broke up with us, our occupational therapist was out-of-network, and the bills were mounting. I was an angry, twitchy stress-ball.
And nobody had any idea.
Surrounded by well-meaning people who didn't understand our situation, I put on a brave face and acted like everything was fine. I was complimented about my "great attitude" and told that God must have chosen us for this special assignment.
"I don't know how you do it!" they'd say.
"I don't do it!" I wanted to shout. "I'm hanging on by a fucking thread and it's all I can do not to scream at you for your seven hours of sleep and your normal-people problems!"
Good, good people would give me books about Temple Grandin, and instead of feeling grateful, I wanted to throw them at their heads. You know, that's really great that she's this brilliant scientist/researcher/professor, but my kid can't wipe his ass, I'd think to myself. I wasn't ready for Temple Grandin. I still don't think I'm ready for Temple Grandin. (With all due respect to Dr. Grandin...but we're still in triage mode most of the time.)
Meanwhile, I had this secret little blog that I would write when I felt frustrated or worried and confused. I didn't show it to anyone. I wanted it to be a place where I could yell at the world without worrying that the world might yell back. I vented, but it did nothing to make me feel better.
 |
| Another Pleasant Valley Sunday... |
Then one day, I read a post by Autism Daddy that sounded so familiar, so like my own feelings, that I took a risk and put a link to one of my posts in the comments. A stranger on the thread read it and messaged me to tell me that she liked what I wrote and felt the same way. She sent me a friend request. I accepted. This was the first time I'd ever accepted a request from someone I didn't know in real life, but as we exchanged short but important messages, I felt like I DID know her. (Yes, Amy. It's you!)
Then I discovered Autism with a Side of Fries, and that settled it. I had to "come out." Here was a woman who was somehow inside my head, and being a Jersey Girl, she even sounded like me! And she was telling her story and she was funny and honest and I thought, I bet that feels good. So I showed her my blog, and she showed Fry Nation, and the rest, as they say, is...
...Where the story really begins--when I found my people. When I found people who didn't wrinkle their noses and say, "Oh, really?" when I mentioned some simple term, like "fecal smearing." No nose-wrinkling here! Just head-nodding! Just, hell-yeah-me-too-poop-is-everywhere-but-what-can-ya-do-right?
I wrote about poop and people didn't act like I was pathetic. I wrote about sleeplessness and nobody suggested we try a "bedtime routine." I wrote about the full moon, and instead of telling me that I was being superstitious, people said, "My kid, too."
I realized that if you get enough of the right people together, our wildly stressful, insanely funny, batshit-crazy existence can seem kind of normal. Our normal.
It was the best feeling in the world. I finally found people who understood, and I'm so, so grateful.
Finding these friends hasn't fixed anything, but it's changed everything. My kid still has sleep problems. My kid still has behavioral issues. My kid still has ass-wiping difficulties. Autism isn't going anywhere...but now I'm not going at this alone.
How can I show my appreciation for all the support I've found this year? How can I tell you that you are more effective than a therapist and a helluva lot cheaper? I couldn't come up with a poem to express how much you all mean to me, so I'm going to leave you with the words of my favorite modern American philosopher:
There's not a word yet
For old friends who just met.
--Gonzo the Great
Peace.
Tuesday, April 8, 2014
The Autism Commune in My Head
There are times in the middle of the night, when I get all woe-is-me because my kid won't sleep, that I'm so grateful for my cyber-friends who are up with me--either because their kids aren't sleeping either, or they live in Australia. (I love the Aussies! Holla!)
And then I imagine what it would be like if we all actually lived together...in the beautiful autism commune in my head. Would you like to take a tour? (This is not real. This is in my head. I promise I'm not trying to sell you a time-share. Go with it.)
First of all, it's not really a commune. It's more like a gated community. I'm claustrophobic and I would have to leave once in a while. Anyway...
Welcome to Spectrum Estates, a judgement-free zone for families with autism. Our community, bordered by a fence, has a security staff specially trained in helping folks on the spectrum. Lifeguards are on duty 24/7.
Our streets are arranged according to sensory-sensitivity. Sensory-avoidance homes are landscaped during the week while the children are at school. The houses with sensory-seeking kids are landscaped on weekends so the kids can stim off the lawnmowers. Ditto for leaf blowers and snow plows. We don't worry about spraying for mosquitoes because this is my fantasy and mosquitoes don't exist.
The climate is warm; clothing is optional. Obviously.
There are several restaurants that cater to every possible food allergy and offer seating choices based on sensory preference. Need booth seating for four in a noisy room full of music and balloons? No problem! Need a quiet corner with plush seats and bland food? We can do it! Our "date night" restaurant features a separate respite room that serves platters of tater tots and Yoo-Hoo. There's something for everyone!
Here at Spectrum Estates, we have a community center with specially-designed rooms for obsessions of all kinds. Be sure to visit our displays of model trains and vacuums! Our community center is a place for therapy and playtime, as well as respite care. We have a gym, pool, climbing wall, and carousel. There is a tiki bar--no cash necessary. Expenses are covered by member dues and puzzle piece magnet fundraisers. "Support Autism. Buy this Mama a Mudslide!"
One of the best features of the community center is the Moonlighters room. Softly lit and lined with comfy couches, it is a safe place for sleepless children be sleepless while parents nap or keep each other company. A selection of bean bag and swing chairs are arranged in front of a number of dim screens featuring soothing favorites like Good Night, Moon, Baby Einstein, and Tales from the Tracks. We shuffle around in our pajamas and snuggies and clutch cups of coffee or beer. It looks like finals week in college...only with kids.
The center offers social activities and support for the siblings as well. There's a specially-stocked kitchen in the Sibling Station full of all the junk food we can't keep in our homes. They can eat gluten and food dye to their heart's content! We have movie nights featuring anything other than Thomas the Train, The Wiggles, Blue's Clues, and Fraggle Rock. Be sure to stop by for our helpful weekly seminars covering topics such as "So Your Brother Dropped Trou in Front of Your Girlfriend" and "Making Echolalia Work for You!"
And of course, the Spectrum Estates activities director organizes plenty of social and wellness events for the parents--yoga, book clubs, wine-tasting classes, wine-making classes, cooking with wine classes...
Everyone is invited to the birthday parties. Nobody gets mad if you can't make it. The playground always has enough swings and the trampolines are surrounded by crash-pads. If your kid wants to wear a Santa hat in June, nobody asks why. If your child insists on showing neighbors his plastic bug collection, there's no need to apologize. If your kid is naked in the front window, nobody will notice.
"Spectrum Estates--Where People Get It."
Happy Hour is at 5:00.
And then I imagine what it would be like if we all actually lived together...in the beautiful autism commune in my head. Would you like to take a tour? (This is not real. This is in my head. I promise I'm not trying to sell you a time-share. Go with it.)
First of all, it's not really a commune. It's more like a gated community. I'm claustrophobic and I would have to leave once in a while. Anyway...
Welcome to Spectrum Estates, a judgement-free zone for families with autism. Our community, bordered by a fence, has a security staff specially trained in helping folks on the spectrum. Lifeguards are on duty 24/7.
Our streets are arranged according to sensory-sensitivity. Sensory-avoidance homes are landscaped during the week while the children are at school. The houses with sensory-seeking kids are landscaped on weekends so the kids can stim off the lawnmowers. Ditto for leaf blowers and snow plows. We don't worry about spraying for mosquitoes because this is my fantasy and mosquitoes don't exist.
The climate is warm; clothing is optional. Obviously.
There are several restaurants that cater to every possible food allergy and offer seating choices based on sensory preference. Need booth seating for four in a noisy room full of music and balloons? No problem! Need a quiet corner with plush seats and bland food? We can do it! Our "date night" restaurant features a separate respite room that serves platters of tater tots and Yoo-Hoo. There's something for everyone!
Here at Spectrum Estates, we have a community center with specially-designed rooms for obsessions of all kinds. Be sure to visit our displays of model trains and vacuums! Our community center is a place for therapy and playtime, as well as respite care. We have a gym, pool, climbing wall, and carousel. There is a tiki bar--no cash necessary. Expenses are covered by member dues and puzzle piece magnet fundraisers. "Support Autism. Buy this Mama a Mudslide!"
One of the best features of the community center is the Moonlighters room. Softly lit and lined with comfy couches, it is a safe place for sleepless children be sleepless while parents nap or keep each other company. A selection of bean bag and swing chairs are arranged in front of a number of dim screens featuring soothing favorites like Good Night, Moon, Baby Einstein, and Tales from the Tracks. We shuffle around in our pajamas and snuggies and clutch cups of coffee or beer. It looks like finals week in college...only with kids.
The center offers social activities and support for the siblings as well. There's a specially-stocked kitchen in the Sibling Station full of all the junk food we can't keep in our homes. They can eat gluten and food dye to their heart's content! We have movie nights featuring anything other than Thomas the Train, The Wiggles, Blue's Clues, and Fraggle Rock. Be sure to stop by for our helpful weekly seminars covering topics such as "So Your Brother Dropped Trou in Front of Your Girlfriend" and "Making Echolalia Work for You!"
And of course, the Spectrum Estates activities director organizes plenty of social and wellness events for the parents--yoga, book clubs, wine-tasting classes, wine-making classes, cooking with wine classes...
Everyone is invited to the birthday parties. Nobody gets mad if you can't make it. The playground always has enough swings and the trampolines are surrounded by crash-pads. If your kid wants to wear a Santa hat in June, nobody asks why. If your child insists on showing neighbors his plastic bug collection, there's no need to apologize. If your kid is naked in the front window, nobody will notice.
"Spectrum Estates--Where People Get It."
Happy Hour is at 5:00.
Friday, March 28, 2014
Greener Grass And Fences And Shit: Why We Are No Worse Off Than Anybody Else
I sometimes speak in a proverbial shorthand I learned from my father. It started years ago, when my mother, a catalog-shopping enthusiast, told me I needed to be more careful with my money. My father, blown away by the irony of my mother offering financial advice, attempted to tell her that this was like the pot calling the kettle black. Only it didn't come out that way.
"Pots and kettles and shit!" he shouted, waving his arms in some kind of gesture meant to indicate a connection between us. "I mean, are you kidding?!"
A new way of talking was born.
I've taught proverbial shorthand to my colleagues, and it's served us well as educators. Like when we call a meeting to discuss the attitude problem of a student, and meet the surly parents. "Wow! Apples and trees and shit, huh?" Or when we give up our lunch periods to tutor kids who don't show up. "Oh, well, you know. Horses to water and shit." Or even the notion that we have to jettison the entire existing curriculum to accommodate the Common Core. "Really? Don't you think that's just baby and the bathwater and shit?"
Note: It's imperative to add "and shit" to the abbreviated phrase.
Anyway, this all leads me to my point, which is, "Greener grass and fences and shit." I mean that we sometimes get it into our heads that our NT friends have happier lives than we do. But I don't think they do. Their lives are different, for sure. Easier? Most likely. But happier?
There are times when it's almost impossible not to compare. After spending an afternoon at a friend's house, Big Bro was uncharacteristically quiet. I asked him what was up. Didn't he have a good time?
It turns out he had a really good time. He and his friend played soccer and basketball and manhunt with her younger brother. Then they went swimming and ate pizza and played video games--all three of them, all day long.
"It's just...she gets to play with her brother. It must be nice. My brother doesn't play like that." And there it was.
I tried to explain how different the circumstances were. Laura and her brother were a year apart in age. There's a five year age gap between our boys. Apples to oranges and shit. But he wasn't having it.
"Look," I said. "Our family is different. But there is no less love in our house. Yes, Laura and her brother play together, but they also fight like cats and dogs. Your brother doesn't play ball with you, but he does idolize you. To him, you are better than Elvis and the Beatles and Derek Jeter all in one. We do things differently here. But we still love each other just as much."
That doesn't mean it's easy.
One night, when things were getting particularly "interesting" in our house, my husband got frustrated. "Other families get to watch movies together. Other parents get to relax a bit. Why is nothing easy? Why is everything such an effin' tractor pull?"
And I responded, "I don't know. But nobody is any happier than we are." And I meant it. I mean it.
We were once an NT family--just the three of us. Were we happier then? Of course not. We had our worries and stresses and arguments. We didn't know at the time that our lives were relatively simple. We didn't know that a few years down the road, we would be installing locks on every appliance and door. We didn't know that we'd be in this club we'd never asked to join, but has the most amazing members. All we knew is that our family didn't feel quite complete.
Well, it's complete now. He's our miracle. And yes, it's hard. We're on our toes 24/7 and we don't get enough sleep. But we get to celebrate every little milestone. We get as excited about the boy playing Candy Land appropriately as we do Big Bro making the honor role. They both bring us such joy. We're going to worry about some things that other families don't worry about and they're going to worry about some things that don't cross our minds. And that's cool. Everybody has their shit.
And shit does get weird around here. Sleep is interrupted all the effin' time. Our conversations revolve around meds, therapies and meltdowns, as well as report cards, scout meetings, and baseball practice. Every outing requires Navy Seal-level planning. There is often some kind of food substance stuck to our walls. And we watch an awful lot of Raffi. But we laugh an awful lot, too. My kids are funny. I mean, the boy was naked and trying to hang rosary beads off his junk! That's good comedy! We have dance parties in the kitchen to Harry Belafonte and the Beastie Boys. And I can hardly wait for the weather to get warm so I have an excuse to blast the kids with the garden hose. Oh, how we all laugh!
Other families likely have cleaner houses. Other families definitely have quieter houses. But I don't believe that other families have happier houses.
Home and heart and shit.
"Pots and kettles and shit!" he shouted, waving his arms in some kind of gesture meant to indicate a connection between us. "I mean, are you kidding?!"
A new way of talking was born.
I've taught proverbial shorthand to my colleagues, and it's served us well as educators. Like when we call a meeting to discuss the attitude problem of a student, and meet the surly parents. "Wow! Apples and trees and shit, huh?" Or when we give up our lunch periods to tutor kids who don't show up. "Oh, well, you know. Horses to water and shit." Or even the notion that we have to jettison the entire existing curriculum to accommodate the Common Core. "Really? Don't you think that's just baby and the bathwater and shit?"
Note: It's imperative to add "and shit" to the abbreviated phrase.
Anyway, this all leads me to my point, which is, "Greener grass and fences and shit." I mean that we sometimes get it into our heads that our NT friends have happier lives than we do. But I don't think they do. Their lives are different, for sure. Easier? Most likely. But happier?
There are times when it's almost impossible not to compare. After spending an afternoon at a friend's house, Big Bro was uncharacteristically quiet. I asked him what was up. Didn't he have a good time?
It turns out he had a really good time. He and his friend played soccer and basketball and manhunt with her younger brother. Then they went swimming and ate pizza and played video games--all three of them, all day long.
"It's just...she gets to play with her brother. It must be nice. My brother doesn't play like that." And there it was.
I tried to explain how different the circumstances were. Laura and her brother were a year apart in age. There's a five year age gap between our boys. Apples to oranges and shit. But he wasn't having it.
"Look," I said. "Our family is different. But there is no less love in our house. Yes, Laura and her brother play together, but they also fight like cats and dogs. Your brother doesn't play ball with you, but he does idolize you. To him, you are better than Elvis and the Beatles and Derek Jeter all in one. We do things differently here. But we still love each other just as much."
That doesn't mean it's easy.
One night, when things were getting particularly "interesting" in our house, my husband got frustrated. "Other families get to watch movies together. Other parents get to relax a bit. Why is nothing easy? Why is everything such an effin' tractor pull?"And I responded, "I don't know. But nobody is any happier than we are." And I meant it. I mean it.
We were once an NT family--just the three of us. Were we happier then? Of course not. We had our worries and stresses and arguments. We didn't know at the time that our lives were relatively simple. We didn't know that a few years down the road, we would be installing locks on every appliance and door. We didn't know that we'd be in this club we'd never asked to join, but has the most amazing members. All we knew is that our family didn't feel quite complete.
Well, it's complete now. He's our miracle. And yes, it's hard. We're on our toes 24/7 and we don't get enough sleep. But we get to celebrate every little milestone. We get as excited about the boy playing Candy Land appropriately as we do Big Bro making the honor role. They both bring us such joy. We're going to worry about some things that other families don't worry about and they're going to worry about some things that don't cross our minds. And that's cool. Everybody has their shit.
And shit does get weird around here. Sleep is interrupted all the effin' time. Our conversations revolve around meds, therapies and meltdowns, as well as report cards, scout meetings, and baseball practice. Every outing requires Navy Seal-level planning. There is often some kind of food substance stuck to our walls. And we watch an awful lot of Raffi. But we laugh an awful lot, too. My kids are funny. I mean, the boy was naked and trying to hang rosary beads off his junk! That's good comedy! We have dance parties in the kitchen to Harry Belafonte and the Beastie Boys. And I can hardly wait for the weather to get warm so I have an excuse to blast the kids with the garden hose. Oh, how we all laugh!
Other families likely have cleaner houses. Other families definitely have quieter houses. But I don't believe that other families have happier houses.
Home and heart and shit.
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