You don't zerbert underwear

“I think Conor likes Dad more than me,” I joked to Aidan while I tucked him into bed.

“Nah, Mom, they’ve just really bonded,” he replied, yawning.

Man, don’t you just love that kid?

I do think Conor prefers Jim to me.  I can see why. 

Jim’s loads of fun… running in the house, tickling, zerberting each other, screaming with laughter.  

They have this whole shtick where Conor is a penguin and Jim is a shark.  (Sharks eat penguins, apparently.) And Jim tickles Conor until he’s blue in the face. They wrestle around and create general mayhem in the house.

“Conor’s a penguin!” Jim will yell. 

“Daddy’s a shark!” Conor yells back. Tickling and screaming ensues, accompanied by rolling around on the floor in some sort of scrum.

Jim also has bit with Conor that my son just loves.  I have no idea how it started, but Conor calls it “doing jokes”. 

“Zerbert my shirt!” Conor starts.  Jim makes a farting noise.  (With his mouth, I feel compelled to say. I don’t know why.)

“Zerbert my pants!”  Conor continues.  Phszzzzt goes Jim.

“Zerbert my underwear!” he giggles and shouts.

“NEVER!  I will never zerbert your stinkin’, rottin’, smelly underwear!” Jim retorts loudly, bobbing Conor’s head around his neck.  (It’s really quite amazing.)

Conor’s screams of laughter continue.  (And I do mean screams.  Loud.)

Somehow, I don’t get the same reaction when I make Conor set the table, change the sheets on his bed, do the laundry or use the leaf blower.  Go figure.

When I mentioned this to my husband, he told me that maybe if I gave up high-fives as easily as he does, Conor would like me better.

Harrrrumph.

I almost pee'd my pants when I saw this.  Stupid-Hilarious.

Survival of the Fittest

Some of Conor's handiwork over the last 4 days.

We have just survived 96 hours straight with Conor.  Yes, I know, that's just 4 days, but it feels like an eternity.

We lasted through two big, public tantrums, countless hours of shooting hoops, listening to Willie Nelson’s “On the Road Again” 300 times in a row followed by the Doobie Brother’s “Old Black Water” 200 consecutive times, an extended family get-together (turkey!), two painted birdhouses, a portable CD crisis, four pretty early mornings (for a holiday weekend), and a harrowing trip to a children’s museum. 

(The museum was Conor’s choice, his “earned” outing.  

Let me tell you three words that do not go well together--Conor+children+museum.  He did fine, but Jim and I had to go home and pop some clonidine to lower our blood pressure.) 

I feel like my skin might slough off.

It pains me to say it, but holidays are a time for me to grit my teeth and muscle through until school starts again.  I’m like a competitive skier that closes her eyes and mentally runs through the course before the gate slams open. I plan and I train, and then I pull up my bootstraps, gird my loins and, of course, snarl for motivation.

That’s not the mom I want to be.  I want to be the mom that longs for five consecutive snow days filled with sledding, hot chocolate, movies, and fires in the fireplace.  I don’t want to be the one that throws eggs at the weather forecaster each time snowflakes light up the 5-day forecast.

I’d like to be the cookie-baking, house-decorating, gingerbread-building, child-hugging fantasy I imagine other moms can be, if only for a couple hours.

Scary lady

I know these days aren’t all fun and games for parents of typical children.  I hear my friends’ laments, and I sympathize.  I really do. I get it.  And from talking to them, I think one of the hardest aspects of raising my child with autism is the lack of opportunity for the age-old standby—the “play date”.

If my typical kid is getting’ on my last nerve, I simply invite Frank and George, Sam and Owen, or Aaron and Andrew over and-poof-they disappear upstairs to play pinball, air hockey, pop-a-shot, and the Wii.  (I have no idea why children come in pairs these days.)

Or if I’m really desperate, I call my friend Sue and ask if Aidan can go over there.  Hell, she’s got four kids and two dogs, what’s another rug rat running around?  Half the time, she doesn’t even notice he’s there, especially since he kind of looks like one of them. (Except that red hair, it’s like a flare.)

My husband and I are Conor’s play date, and I have to say, it’s exhausting to be your adolescent’s play mate for 8 hours a day.  (Jim and I split the duty.) And he’s a play date that, honestly, could give a crap about what YOU want to do.

And so we dance that delicate dance that we have, between doing the activity he would like to do 12 hours a day (bounce a ball, listen to Willy Nelson) and the horrible, horrible activities we require him to do.  Like Arts and Crafts, Yoga, Play with the Dog, or Cook Something Fun!

It’s 9pm now.  Eleven and a half more hours to go until school starts again.

I will survive.  I will survive, hey hey.

Um, no, you really shouldn't have. No, really.

Yesterday was not only Thanksgiving, it was my birthday. (Why thank you, I turned 42.)  

I scored with a very snazzy Kindle Fire (love), a beautiful silver bangle bracelet, and a calculator. (Calculator, of course, from Conor.)

 

In addition to the calculator (that, I was informed, goes to billions and was for my office), Conor gave me a grand mal, very public tantrum. 

It was a complete package, with strangers asking if everything was ok, Conor trying to pull his pants down, my abandoning my favorite "go cup" for my tea on the sidewalk, automobile drivers slowing down and staring as they went by, and my husband having to wrestle him the half mile home. 

 

And, to make it even better, we were walking the dog. (Of course we were.) Linus immediately began to FREAK OUT, thinking (I'm guessing here, he didn't say) that Jim and Conor were playing some sort of fun game that any dog would love to join.  

So today my back and chest hurt from wrestling a 60lb, three year-old, lunging, barking standard poodle for a half mile while my husband (who is in very good shape) doesn't seem to have suffered any physical ill effects from wrestling a kicking, screaming, biting, punching 100lb twelve year-old adolescent boy with autism a half mile.

 

So fun.  NOT.

 

The problem with a "consummable" gift like this tantrum is that if you don't like it, you're out of luck.  It's nonrefundable.

And then you feel badly because you don't really appreciate this gift, but you can't take it back to buy what you really wanted.  And then Conor feels badly, because he's given you something that, quite frankly, you can tell he doesn't really like himself but couldn't figure out what else to do. 

All I have to say is that I hope Conor comes up with something different for Christmas, or I'm going to be really disappointed.

Drink? Twist my arm.

The other night, my husband was mucking around in our unfinished basement and came up out of the depths with a dusty bottle of wine clutched in his hand.

“We seem to be always ‘saving’ these nice bottles of wine,” he said.  “But I don’t quite know what we’re saving them for.  Let’s start to drink them.”

Hey, you don’t have to ask me twice.

We have a very small (teeny tiny) but nice collection of wine in the basement, most of which were given to us as gifts during the halcyon days of my husband’s career.  (I don't know, are there six of them?) A few wines were obviously expensive, and we put them in the basement to save for a 'special occasion'.

Except ‘special occasions’ rarely happened in our house after Conor’s diagnosis.  We used our formal dining room for monthly team meetings with our various therapists, consultants, and teachers. There were so many people that we outgrew the kitchen table very quickly.

Visions of fetes to be had, large family gatherings at holidays, and swanky cocktail parties went quickly by the wayside as we tried to cope with our son’s diagnosis and challenging behaviors.

(I never liked that stupid china anyway.  So there.)

Before Conor went bazooka (BCWB), we did have friends and family over, especially during the summer. It was easier in the summer (isn't everything?), letting the kids hang out by our backyard pool and on the playset in the yard. Jim and I would take turns supervising Conor, and we could catch a moment or two with our friends or family.

But these were chips-and-guacamole, hamburger-and-hot-dog get togethers with gaggles of children.  I love Tim and Sue and Lize, but franks and beans (and nine kids between us) go great with my $11.99 bottle of Jack Barrett or a margarita, not a 'special occasion' wine.

So there the bottles sat, in the basement gathering dust.  I’d look at them longingly each time I went to hide a Christmas present down there but otherwise we didn’t give them much thought.  Oh, we had one for a special wedding anniversary. (Our tenth, I think.) We drank the bottle after the kids went to bed, and took turns holding our heads in the morning.

But mostly, we celebrated special times at a nice restaurant, leaving the kids with a trusted babysitter. It was just easier that way.  And quieter. (BCWB, anyway. After Conor went bazooka, we couldn’t leave him with a sitter.)

And so our 'special occasion’ wine has stayed in the cellar for a decade, aging and maybe even improving.

I'm glad Jim decided to break out the 'special occasion' bottles of wine.  Because, in our family, sometimes just surviving the day is an occasion to be celebrated!

The 2001 Beringer Napa Valley Cabernet Sauvignon Private Reserve--

Jim really enjoyed the voluptuousness of the wine, but I was thrilled that the finish lasted nearly 60 seconds.  Giggle giggle.

From Wine Spectator—

Large-scaled yet elegant, it boasts classic notes of creme de cassis, chocolate, and smoky oak. With extraordinary voluptuousness, great concentration, tremendous intensity, and a finish that lasts nearly 60 seconds, this saturated purple-colored, full-bodied Cabernet Sauvignon is one of the greatest wines ever made at Beringer. It is a tribute to the brilliant Ed Sbragia.

Yes, I am a dork, and I looked this up on the Internet.

My Husband is a Ho

My husband is a ho.  

There, I’ve said it.  He is a high-five ho.

He gives up his high-fives to Conor at the wink of an eye.  You don’t even have to buy him a drink first.

Me, I don’t give up the high-five so easily, but Jimmy?  He’ll high-five anytime Conor raises his little hand.

“The sky is blue!”  Conor will raise his hand for a high-five and smack!  There goes Jim, high-fiving him. Again.

“The rain is wet!” High-five.

“Conor went to the store and bought a calculator!”  Smack.

“Conor DID buy Mommy a calculator for her birthday!”  High-five.

“Conor is going to Port Discovery on Friday, November 25^th.” Smack Smack. (Double high-five.)

Conor loves getting high fives.  I don’t really remember when it started, but he’ll high-five you all day long if you let him.  It’s like a Seinfeld episode, especially when Conor talks about himself in the third person at the same time.  (Hey, pronouns are hard. Seriously, hard.)

“The Wii broke on August 24, 2011!”  Double smack.

Sometimes Conor views the high-five as your handshake.  He’s sealing the deal.  Most of the time, I think he just loves the interaction.  He definitely loves the attention. (It’s awesome when he and Aidan high-five each other goodnight.)

So what can I say?  I’m picky.  I’m choosy about when I high-five Conor.  I have a little respect for myself. I want it to mean something. 

But my husband?  He’s a high-five ho.  And he’s not ashamed to admit it.

Level 3 Is The Place to Be!

Conor's been home from the unit for 26 days now (that's 624 hours, but who's counting?), and our days are slowly developing a routine and a rhythm. We've had our ups and downs, but thankfully he's behaved well so far.

In addition to coming home with a suitcase full of clothes and a passel of gifts, Conor brought his treatment protocol.  Forget the gifts, this protocol is gold.  We trade it with therapists, aids, and each other like a baton in a relay race.

"Do you have the token board, Jim? Have you seen it, OMG, do you know where it is?" I compulsively grill my husband throughout the day.   He loves it, like he loves being raked over hot coals and sharp nails.

I'm thankful that the boards came with a carabiner so I can clip it onto my clothes and his backpack so it never gets lost.

Now, it's actually double-clipped because it fell off in the mall once and Conor practically freaked out.  (We found it.  Thank you good karma.)

The protocol is deceptively simple.  That is, it doesn't sound like rocket science until you try to implement it all day, every day.  Combine the token boards with Conor's budget rules and superstar outings, and you can melt your mind trying to figure out all the intricacies.

And if we try to gloss over the details, don't worry.  Conor knows the protocol inside and out, and if you even give a centimeter, he'll start pushing and pushing and pushing that boundary.

Hmmmm, sounds a little like childbirth, doesn't it?  It's certainly just as painful.

Level 3 is the place to BE!

Conor's behavioral team put him on a "level" system.  On Level 3, he earns tokens, and has access to toys, TV, fun stuff, and attention.  If he earns enough tokens, he gets 30 minutes on his beloved screens... his computer, his iPad, his Nintendo DS, or the Wii.  His much-desired "treasure chest" time.

If he engages in any destructive behavior (tearing paper, writing on walls, throwing things), aggression, self-injury or elopement, Conor gets demoted to Level 2. On Level 2, he does not earn his token, and loses access to toys, TV, fun stuff, and attention.  He has to be calm for five consecutive minutes before he can be back on Level 3.

There's no Level 1.  I have no idea why.  Maybe Level 1 is hell, or what I like to call Wal Mart. You've been really really bad Conor, pass Level 2 and go right to Wal Mart.

But I digress.

On the unit, Conor decided he loved Phineas and Ferb.  So he earns Phineas and Ferb tokens for good behavior.  He started out earning tokens every half hour, and they bumped it up to each hour by the time he was discharged.

According to our outpatient services behaviorist, this is a "thin" schedule.  I guess some individuals can be rewarded every 30 seconds or every minute!



Mon Dieu, can you imagine the effort? I have trouble remembering to get my hair highlighted every three months, for Pete's sake.

So, according to this token board (above), Conor has been in Level 3 for six consecutive hours, earning two Treasure Chest times and two superstar tokens.

That's right, you heard me.  There are even more tokens.
Not only is Conor reinforced by screen time, he loves loves loves going into the community for outings. Dispel any myth you might have about individuals with autism wanting to stay in their rooms all day long.  I'm sure there are those that do, but my boy loves himself an outing.

I like to call these his "SUPERSTAH" tokens,
with a flourish of jazz hands and
a voice like a very southern, very fabulous
Carson Kressley

This picture shows that Conor was on Level 3 every hour from early Monday afternoon to Friday morning.  He has to earn at least 80% of the tokens to go on the outing.

You don't mess with the outing.  At least, Conor doesn't.

Every week, it's a different choice, and it seems rather random about where Conor would like to go.  Inevitably, it usually leads back to a calculator, music CD, or a puzzle.

This Monday he wants to go to Staples to (drum roll please)... buy a calculator.

We have to track how often he buys these treasured items, but that's a whole 'nother protocol.

See what I mean... deceptively simple, remarkably complicated?

Finally.... we are trying really really really hard to control Conor's constant requesting. I mean, my kid could be a dictator of a third world nation. He will hound you to the death.

Some of it is to try to figure out why you're making the decisions that you do, but most often, he's trying to wrangle his way around a ruling you just made. My kid may have a major communication disorder, but man, is he smart.

I'd rather referee the SuperBowl than try to discuss these rulings with my twelve year-old. It's gotta be less painful having a 300lb linebacker run you over than to answer these questions for an hour. Or two.  Or three.

We have two things we're trying to manage--

constant requests for obsessive items, places or things 

"When can Conor go to 59 St. Bartholomew's Road?"

and inappropriate comments

"Want to bite Stephen M.!"

(Don't worry, Stephen M., he just screeches this.  It's not a "say it/do it" kind of scenario.  But I'd keep my distance, just in case.)

This is the final token board (below). Yes, that's right, another one. Each time Conor makes an inappropriate comment, he loses an iTouch token. If he has at least one token left on the board after two hours, he earns ten minutes on his iTouch.

These iTouch tokens can be taken away, rather than earned.

For his constant requesting, Conor writes down his request in his book. Jim and I either allow or deny the request.  (To be honest, now once he writes them down, he generally doesn't bring it back up.)

If he continues to request the same or new items, he loses tokens. I think.  I have to look that one up.

See?  See?  There's so much to juggle and remember.

In any case, this is Conor's third Comment notebook since they started the protocol.

Who can keep track of all this?

We all have to.  Home, school, therapists, respite care workers, camp counselors...  consistency is the key to success.

We do it all day.  Every day.  Every hour.  Holidays. Weekends.  Evenings.  Sunday mornings.  From the time he wakes up until he closes his eyes at 9:15pm.You get the picture.

So far, things are going well.  But don't worry if you step out of line.  Conor will be sure to correct you.

Conor reads his rule binder every day.  It's remarkably good at explaining the protocol.  But since he knows it very well, he reads it really really fast. Check it out.

My Furry Brother

Linus.  With a party hat.  Don't ask.

Linus, our two year-old standard poodle, came up to Aidan tonight, and put his head in Aidan's lap.  Usually I’d give Linus (and Aidan, truth be told) a hard time since Aidan was enjoying ice cream at the moment.

(Linus is a total table- and counter-surfer. He’s supposed to have his parti-poodle butt on the rug when we’re eating. But, like both my children, Linus likes to continually test the boundaries.  There’s a lesson in there for me somewhere.)

“What’s the best thing about having a dog?” I asked Aidan, just making conversation.

“Well, it’s like having a real brother,” he replied matter of factly.  “Well, I have a REAL brother already, but, like, a normal brother.”

“A normal brother that poops in the yard, you mean,” I countered, smiling.

“Yeah,” he chuckled, looking a little bashful.  “That poops in the yard.”

 In many ways, Aidan (my nine year-old typical kid) is like an only child.  But most times, it’s harder than being an only.  Certainly, in the past year at least, he’s been left in front of an electronic babysitter more than I would like because Jim and I were always busy either dealing with Conor’s behavior or trying to recover from dealing with Conor’s behavior.

There's so much he can't do because Jim and I can't donate the required time to the activity (i.e. I'm no soccer mom, I'm an autism mom), or I'm just too tired of asking our friends and family for favors.

Often, it seems like Conor and Aidan exist in alternate universes, sharing a home, a dog, two fish, and parents but rather than interacting with each other, they just orbit around each other.

I hate to say it, but I feel like we’re all moons orbiting around planet Conor.  His gravitational pull is just so strong.

“You know, Aidan,” I continued, “studies have shown that petting your dog or cat can help you feel calmer inside.  It can even bring your blood pressure down when it’s too high.”

“That must be why I felt so calm this summer,” Aidan said.  “I spent a lot of time petting Linus.”

“It may be why it was calmer,” I agreed.  “It could also have been that Conor was in the hospital all summer. It’s ok to admit that it was chaotic and hard when Conor was home before.  But hopefully he’s better now.  Happier.  Nicer.”

“No, I petted Linus a lot this summer,” he replied.

Ok Aidan.  If you insist.

Practice Makes Perfect

Last night, we traveled the 35 miles out to my parents’ house with both kids to “practice” for Thanksgiving.  This was our third “practice” session at my parents’ house and, other than one small incident, it’s gone pretty well. 

I want to make sure that things go smoothly at Thanksgiving, although it’s only going to be ten of us so I’m not sure why I’m fixated on this.  But I have GOT to make it nice.

Ok, ok, I admit, I know why.

Last Thanksgiving was a disaster, and we admitted Conor into Sheppard Pratt the next day. (That was his first hospitalization.) Aidan wound up staying at my parents’ house for days and days.

At home, Jim and I take turns eating dinner. All four of us try to sit down together at the same time every night, but Conor finishes his meal in five minutes. 

I swear, it’s like he has a vacuum hose attachment for a mouth. I think it’s because he doesn’t talk during the meal.  Seriously, you can ask him question after question and he just won’t answer you.  Never has, don’t know why.

Since my husband generally inhales his food in five and a half minutes (in spite of talking), he often jumps up to supervise Conor as I’m just sitting down to eat mine.  (Jim’s one of five children-four of whom were boys-so I think he just got used to fighting for his food. If you didn’t get it down your gullet in the first three minutes, you went hungry. Evidently there's some pork chop incident that lives in infamy.)

Aidan watches all this jumping up and down with amusement. (Aidan takes forever, especially when there is a green bean involved.)

It's poultry, so I went with a white.

But when we’re visiting friends and family, I often take the second shift just so I can linger over the end of the meal, have another glass of wine, and catch up.

(Don’t tell my husband; he thinks I’m just being nice.) 

Anyway, since Thanksgiving is all about mealtime, I’m working really hard to make sure that dinner is accompanied by good behavior by Conor.

I’m already making a mental list of items to take, including his favorite calculator, dot-to-dot books, and an arts and crafts project.

When he jumps up from the dinner table and definitively announces “Mom, may I be excused” (as if I have a choice), I’ll have a bevy of activities to keep him occupied so everyone else can enjoy their green salad, sweet potato, turkey, stuffing, mashed potatoes, carrots, kale, rolls and...

Um, YUM!

Hey, my mom puts on a spread.  

It makes me feel pretty small to admit that I often resent having to follow my twelve year old around like he’s a toddler, especially during holidays.  Please Conor, I want to say to him, can’t you just sit down and read a book while we eat dinner at a normal pace?  Watch TV? Not scream so loud all the time? Could you sit still for just two more minutes? Three?

Many people have loved ones that can’t even go to family gatherings and holidays, much less to other people's houses. So I shouldn’t complain that I can’t sit back, have a tall cold one, and enjoy the football games and the holiday dinner like everyone else.

It’s Thanksgiving, so I think I will just be thankful that Conor’s not on the unit anymore, that he’s doing better than he was this time last year, and that my family can afford to host a lovely sit-down dinner, even if Conor, Jim and I don’t do much sitting at all.

Conor channels his inner chimp

I now have proof that humans have descended from apes.  It’s Conor.  He’s unleashed his inner chimpanzee, and I have to say, it’s really, totally, horribly annoying.

Conor’s never been a quiet kid.  He’s always engaged in a lot of nonsensical noises, generally in a loud voice.  But this… this new noise takes it to a whole other level.

Eeeeeeee EeeeEEE EEEEEE Aaaahhhhh AaaAAhhhHH Ooooooh Ooooooooh  AAAAAHHH

Normally, I don’t care if he makes noises.  It helps me keep track of what he’s doing.  (Too quiet is actually a bad sign.  Quiet means he’s up to no good.)

We actually used to encourage him to go into the depths of our unfinished, dirty basement to whoop it up.  He’d ride around the dirt floor on his scooter, sing bastardized versions of The Lion King songs at the top of his lungs in a nice falsetto, and eat the scraps we’d throw down to him every night.  (That’s a joke, by the way. The scraps part.)

But this new chimpanzee noise, it’s driving me crazy! He’s literally doing it at the top of his lungs.

Eeeeeeee EeeeEEE EEEEEE Aaaahhhhh AaaAAhhhHH Ooooooh Ooooooooh  AAAAAHHH

And in the shower too, for good measure.  He gets phenomenal reverb in there and jumps up and down for good measure.  I keep expecting him to throw feces at the glass like the chimps at the zoo.  (I kid, I kid you. It’s a joke, the feces part.)

(Yes, Mom, I know jumping in the shower is bad; he could fall.  We’re working on it.)

The worst--when he adds his new favorite activity to the chimp screams.  Bouncing the ball.  In the hall, not the shower.

Any ball, he’ll bounce.  Watching him try to bounce the golf balls off the walls led me to ban them in the house. We have windows and mirrors and pictures and things with glass, after all.

He’s particularly fond of those medium-sized plastic bouncy balls from Target (they make a nice “ping!”), but he also likes tennis balls and Sky balls.  Sounds innocuous enough, the ball bouncing.  Until he’s on his twentieth minute of bouncing on the wood floor, that is.

THWACK THWACK THWACK

 THWACK THWACK THWACK

Eeeeeeee EeeeEEE EEEEEE Aaaahhhhh AaaAAhhhHH Ooooooh Ooooooooh  AAAAAHHH

 THWACK THWACK THWACK

THWACK THWACK THWACK

 Eeeeeeee EeeeEEE EEEEEE Aaaahhhhh AaaAAhhhHH Ooooooh Ooooooooh  AAAAAHHH

AAAAAAAAAAAHHHHHHHHHHHH!

That last one, that was me pulling out my hair.

I've got my eyes on you

On New Year’s Eve, many, many years ago, we left Conor with our babysitter and went to a friend’s house for a part-ay.  (I’m raising the roof right now.  Whoop whoop.)

This was when Jim and I were still young and could stay up until past midnight.  (Now, we’re more apt to wake up when the midnight fireworks go off, yelping “What was that noise?” at each other.)

We got a frantic call from our babysitter.  A pipe had burst in the house and we needed to come home right away.  Fortunately for us, we found a plumber who made house calls even on holidays.

Let’s just say that the kind of gentleman that can come on a moment’s notice, past eleven on New Year's Eve, could possibly be a little, hmmm, odd.  In short order, this guy totally ignored me, hit on my babysitter hard, and started calling my husband “Boss Man”.

Seriously, it was like a bad sitcom skit.  “Whatever you say, Boss Man,” he would say to Jim, bobbing his head.  My husband stared at him like he had three eyes and a big booger hanging out of his nose.  Gloria and I just chuckled at each other. We still occasionally call Jim “Boss Man”.  (Never gets old.)

Hey Boss Man, feelin’ lucky tonight?  
Snort, chuckle.

Jim may hate being called Boss Man, but he actually is a good boss. (I should know, he was my boss after all.  That’s how we met. I was his administrative assistant.  Scandalous.) 

Me?  I hate supervising people.  It’s not one of my strengths.  Oh, I’ll do it if I have to, I can give a great annual review. I can do the technical part of the job. But I find it exhausting.

Now that we have help in the house, it’s great.  Except when it’s not.

I’m having a hard time figuring out if one of our instructors knows what she’s doing. She’s a little green, never having been an in-home therapist before.  That’s no reason to discount her abilities.  Plenty of the Clinical Assistants on the unit had never worked with kids with disabilities before and they did just fine.

It’s just, well… there’s so much at stake.  And I’m terrified of making a mistake. 

I don’t want to continue with the wrong person and risk all the progress he’s made.  He can’t tell me if Miss Nancy is mean or nice, patient or short tempered, drunk, sober or hungover, whatever.

Nancy was hired by the service provider, so I didn’t get to interview her and they have a policy of not sharing resumes with parents. I did my own little interview in the car on the way to the toy store with Conor, though.  Of course I did, you betcha.

He can’t tell me, that’s the problem. 

My own therapist would tell me that I’m “catastrophizing”. Catastrophizing is when you have irrational fears about events in life, usually imagining the worst possible outcome to an event, even when it is extremely unlikely. It can lead to anxiety. (Um, yeah, that’s me.)

I shouldn’t just assume the worst.  Nancy’s only been with Conor for two weeks, for heaven’s sake.  A learning curve gets pretty steep when THE MOM is hovering over you every second of the afternoon.  Did you give him the token at the right time?  Did he earn his iTouch?  Don't forget the Superstar token.  Did he poop yet? Put the toilet seat up?  Put the seat down?  Wash his hands? Turn out the light, I want him to learn to turn out the lights when he leaves the room?  (Seriously, I  wouldn't work for me.)

I’m not stuck with this person either.  If she doesn’t work out, we’ll find somebody new. It’s also nice that I’m not alone.  There’s my husband, of course, our case manager from the autism service provider, and the outpatient services provider from Kennedy Krieger Institute.  So obviously, it’s not just me watching what’s going on.

I’ll do it.  I will. I’ll try to stop wringing my hands and imagining the worst scenarios.  I’ll pretend I just took a Valium and chill out once in awhile.  I’ll spend lots of time with Miss Nancy so that I can see for myself how she interacts with Conor.  If something’s amiss, I hope I catch it. I'll be a good boss.

Because I’ll be watching watching watching you, Miss Nancy.  Oh yes, I will. I’ve got my eye on you.

Waiting for the Shoe to Drop

OMG I WANT these.

Conor’s been home from the unit for seven days now.  I have to be honest; the first afternoon was a little rocky.  Ten minutes after walking in our front door, Conor had his first tantrum.

See, if we tell Conor to do something, he has no choice.  He has to do it.  I had given him two options of leisure activities to do, and he wouldn’t choose one.  He kept interjecting his own (different) activity.

So I chose for him, just as they had taught me. 

You guessed it. I forced my twelve year old to watch TV. 

I’m a horrible parent, I know.  I think my kid is the only one on the planet who had a tantrum because his mom WANTED him to watch TV.  Watch it, Conor.

WATCH TV, OR ELSE!

What can I say?  I was trying to have a little downtime after a morning of saying our goodbyes and discharge meetings while my husband had a bite to eat. (The other option was to shoot hoops in the backyard.  He didn’t want to do that either. The horror, THE HORROR.)

We managed the tantrum, and it was pretty bad. The eye punching is always the worst. But the whole thing only lasted fifteen minutes.  Progress!  Before the unit, Conor would tantrum for a good ninety minutes. 

He recovered, and we went on with the afternoon.  That is, until he got demoted again for head-butting my husband.  (He gets demoted for any aggressive, self-injurious, or destructive behavior. Demoting means no access to activities or attention.)  This time, no tantrum.

O.M.G.  He’s cured.  They cured him!

Unfortunately, no, there’s no cure, no quick fix.  I’m not being pessimistic here; the psychologist we met during the discharge process was honest and up front about Conor’s prognosis. Given the fact that he wound up on the unit, he is at risk for reoffending.

He’ll most likely have behavioral challenges for a long time, maybe forever.  But if we work at it and stick to the behavioral treatment protocol, we have hope that he’ll never get bad enough to have to go back to the pokey. But no guarantees, I guess.

It’s been a week, and he hasn’t had a tantrum since the day he came home.  Conor’s been absolutely pleasant, to be honest.  My husband and I keep looking at each other with wonder in our eyes.

My best guess… we’re in a bit of a honeymoon phase, and I’m simply left waiting for the next shoe to drop.

Much more practical
than the stilettos

But if a shoe has to drop, I figure it should be a nice shoe.  Why not? 

And so I’ve ordered these very cool (and waterproof!) Merrell boots from zappos.com.  (Love Love LOVE zappos.com.  It should be illegal, it’s so easy to order from them. And free shipping, mon dieu!) 

Fabulous.

If I got a pair of shoes for every tantrum, I might not mind waiting for the next shoe to drop so much.