Sunday, July 31, 2011

The hard, cold facts

This week was like a splash of cold reality.

First, they discharged Pippen on Friday.  This is really interesting because Pippen had an AMAZING tantrum on the unit on Wednesday.  I know, I witnessed the event.  (At least, I witnessed the beginning of it, like the loud POP of a firecracker going off. After that, Conor’s Clinical Assistant immediately jumped up to stand between the two of us and Pippen. I felt like Whitney Houston in The Bodyguard.)

And thus, I am reminded that the goal is an 80% reduction in behaviors.  Not zero behaviors, not 99.99% of behaviors reduced… 80% reduction.

Hey, listen, I know these people aren’t miracle workers.  There’s no magic pill (although that topic is for a future post).  Slogging through an effective behavior program takes discipline, structure, follow through, consistency, and a lot of medication for all of the parties involved.

(One mom is promoting pot brownies and I’m currently researching how to implement this, um, treatment for both of us. I’m all about the science, you know. And it beats eating porcine whipworm eggs.  It’s true—and worked for that kid--but more about that later.)

The cold reality is that when Conor is discharged, he will continue to have behaviors.  Intellectually, I know this.  We’re prepared. It’s the emotional side of me that is struggling to accept it. I just want my snuggle bunny back.  Without the rabid rabbit side.

Second, I recently learned that this is Stacy’s second visit to the NBU.  Holy mary mother of god, we could go through all of this, try our damndest to get Conor better, and return for round two? O.M.G.

(Insert bad Poltergeist II Heather O’Rourke imitation here… “They’re baaaaack!”. Here's the original Poltergeist II trailer... wasn't allowed to embed it.)

Now, I know that this is rare.  And Kennedy Krieger will do everything in their power to try to avoid this happening.  After Conor is discharged, they will follow him for a very long time and continue to help support our family as best as they can.           

But changing behavior that has existed for a long time isn’t easy.  (Jillian Michaels can tell you that.) And it doesn’t happen overnight. 

If Jim and I can’t follow the protocol, if school struggles with the plan, or if Conor’s brain decides to have another firestorm, it IS possible he’d wind up there again.

Hmmm, well, time to take a hot shower to wash away the cold reality.

Wednesday, July 27, 2011

Vacation, All I Ever Wanted

My husband and my 9 year old leave in two days to go on vacation, and I haven’t packed a thing.  Well, that’s not really true. 

I threw some sheets and towels in a bin since they have to take their own linens. I’ll be joining them a few days later, so I’m packing for myself too.

It’s so different when Conor goes with us.  

By this time last year, I had three lists taped to the refrigerator (itemized and categorized by what bag or cooler the item went in), visited Target at least twice, the pharmacy three times, and had already started putting clothes and beach items into bags and suitcases.

Hell, half the time I ship a box of nonperishable foods ahead of time when I am unsure if the local grocery store carries them.  I’m not going anywhere without Quaker Lightly Salted rice cakes.

One year, I was explaining to a close friend’s husband about my frenetic, hyper kinetic packing.  I complained about the god-awful amount of items we took each year.  (Ok, ok, I was whining pathetically. They’re really good friends.)

He looked puzzled and suggested that since we were going to the beach that I pack two pairs of shorts for each of the boys, two t shirts, a pair of underwear, a bathing suit, a towel, and whatever else I forgot I could just purchase when we got there.

I just gaped at him.

I have a kid with autism, the price of forgetting a treasured item (or, Mon Dieu, a medication) is so high that, if I could afford it, I would move my entire household of items to the beach house for the week.

If Conor’s obsessed with the kitchen sink, by god, I would move the kitchen sink.  I want vacation to be at least a little bit enjoyable for us.

I tried to explain this to Tim, and he said he understood.  But as he walked away, I could tell that he didn’t really get it.  And I couldn’t blame him.  It sounds utterly mad, truly insane. 

But it’s what we live with each and every day.

One year, when Conor was much younger, we flew to Florida for Spring Break.  This was a big deal for us.  Airplane ride, new city, new resort, no idea what to expect.

The morning we were flying out, Conor discovered a pretty blue marble.  So cool, don’t you think?  Smooth, round, feels good in your hand, it’s a sphere!  Conor hung on to that marble through the ride to the airport, through security, while we waited to board the plane (step right up to the front of the line, thank you, my child has a disability, trust me it’s in your best interest), and we found our seats. 

Being the overwrought mom that I am, I suggested that my husband take Conor to the bathroom on the airplane before we took off.  Of course, Conor took the marble with him.  Why wouldn’t you, when it’s the MOST AWESOME THING you have EVER SEEN?

I could tell something went wrong by the look on my husband’s face when they came back.  I was sitting a row behind them because Aidan was still in a car seat and you CAN’T have a CAR SEAT anywhere but next to the WINDOW.  Because you might CRASH and then you CAN’T GET BY the CAR SEAT as you run SCREAMING down the aisle.  (Like that’s what I’m going to be worried about if the plane crashes.  This was pre-Sully Pilot Hero, though.)

The marble went into the toilet, my husband reported.  And he isn’t sticking his hand down THERE.  (No, I would think not, I readily agreed.  Good decision.)

Well, the tantrum that ensued over losing that blue marble was monumental.  This blew my mind.  Conor hadn’t even known the marble EXISTED before that morning, but losing it was it was like losing his best friend.

And WOW, the other passengers were SO understanding and compassionate.  (I’m being sarcastic here.)  I suggested to Jim that we leave the plane, but this was post 9/11 and our bags were already checked.  Getting off meant delaying the plane and then the other passengers would REALLY like us.

Fortunately, my husband was able to calm Conor down and we took off with no delays.  The vacation was a blur, but I think we had a moderately successful vacation.  All things considered.

And so here I am.  Drifting around without the usual stresses of forgetting a special something.  If Aidan forgets to pack his DS or his iTouch, that’s his problem, not mine.  (Smile.)

That reminds me, I have to pack at least one bottle of Pinot Noir so I don’t have to go the liquor store when I get there.

Tuesday, July 26, 2011

Mall Rats

Weekends are for outings, at least for those on the unit without elopement issues.  It’s been so bloody hot this week that Conor’s been to two malls this weekend.  I’ve been thrilled that I can accompany him on both of these outings.

Going to the mall with a retinue of staff to help out if Conor has a tantrum?


Being able to walk around the mall and actually tell him “No, you can’t buy that fifteenth million puzzle” without worrying that he’s going to yank my hair out by its roots?


Seeing Conor having to wait his turn, wait for the group, be patient while other children take their time walking around?


There were so many staff with us, I felt like I was with P. Diddy and his entourage.  Six adults for three kids?  Yeah, that’s about right.

I had a whole strategy in my mind.  If Conor had a tantrum, I would go and stand next to Stevie, who has red hair and blue eyes and looks enough like me that I would pretend to be his mom.  At least until he started up.  Then I’d move on to Johnny and pray that he’d behave himself… at least for a few minutes.

If things got really hairy, I would quickly walk into The Body Shop and pretend I was interested in organic free trade vegetarian fragrance free no sodium laurel sulfate apricot liquid soap for sensitive skin.

Luckily for me, Conor behaved well despite a high level of anxiety, and I escaped the mall without having to buy any soap.  And I held his hand the entire time.


Monday, July 25, 2011

Happy Birthday Dad

This past Saturday was my husband's birthday.  In case you've forgotten what he looks like, here's a recent photo--

He's been working out.

Anyway, Conor came home for a visit the day after Jim's birthday.  He wanted to share what he did to help his dad celebrate.

Sunday, July 24, 2011

Hold that thought.

When he was younger, I used to really fret about whether we were doing enough to help Conor.  When your child is newly diagnosed, all a parent hears about is how intensive early intervention needs to be, how you need to push hard hard hard right now to make progress.

Seriously, it's like giving birth all over again.  Push push push hard hard hard.  Oh, lady, not THAT hard.

So on days when I felt like we were struggling through quicksand, like we weren't getting absolutely anywhere, I would look at this card that I posted on my bulletin board.  I would take a deep breath.

And it would calm me, at least a little.

Friday, July 22, 2011

Self Portrait (if I were a talented artist)

“Three Capacity Men,” a 2005 sculpture by Thomas Schütte in “Ostalgia,” an exhibition of art from and about Russia and the former Soviet bloc, now at the New Museum. As seen in today's New York Times.
At the end of a long day with Conor, this is how I feel.

Looks like a good excuse for a mani/pedi, a massage and a facial. At least I can skip the hair cut and highlight.

(In all seriousness, I love these sculptures; they speak to me. I want to put them in my formal living room and stare at them for hours.)

Thursday, July 21, 2011

Climb Every Mountain

Mt. Everest.  Beautiful, isn't it?

Right now, this whole thing, this whole damn autism thing, simply seems insurmountable. 

I feel like we’ve been climbing toward the summit of Mt. Everest for the last ten years and now there’s been some cosmic joke and we’re all stuck at some horrible base camp, gasping for oxygen.  And there’s an icy wind blowing.

Let me be honest.  I am no tough cookie.  Over the years, I’ve learned that I like to take it easy. 

Ok, I’ll say it, I’m a little… lazy. Ok, I'm lazy. I don’t take on challenges simply to take on challenges. 

I have no idea why you would even climb a mountain when you can simply drive around it or fly over it.  (Oh look down there, how pretty! Pass the Bloody Mary, steward, when do we land?)

My husband is the athlete, the challenger.  He’s the one running 6, 8, 10 or more miles a day, blisters on his feet, sweat pouring off his forehead, pulling muscles and tearing his meniscus, ignoring the inevitable chafing. 

Personally, I think avoiding chafing is a good thing. But that's just me.

Me, I’m still the book-nerd, sitting in the corner reading a 700 page Harry Hole mystery thriller, twirling a lock of my hair. I have never torn my meniscus reading a book. My eyeballs do not get blisters (although I may get a headache from reading for too many hours in a row).

Simply put, I am no autism mom/athlete/wunderkind.  With a passion, I hate this challenge.

But I love my son with an equal passion. And so I will climb this stupid mountain with him. 

I will strap my oxygen tank to my back (it’s filled with Pinot Noir, but still, it’s my oxygen, don't judge) and I will drag myself and my kid up this stupid fucking autism mountain with bleeding fingernails, weeping blisters, and cramped toes, sweating and bitching and moaning and complaining the entire way.

I’ll do it ‘cause I have to, but you can’t make me like it.

For you Sound of Music fans... you know who you are!  I know, it's corny, but who doesn't like The Sound of Music?

Wednesday, July 20, 2011

Lucky Number 13. Times ten.

I snuck around to the pantry last night, phone in my hand.  I didn’t want my husband to know I was calling the nurse on the unit.  (I don't know why, I just didn't.)

Plus, all the contact names and numbers are there on the bulletin board.  Win-win.

I saw some bruises where Conor didn’t normally have them, and I was calling to check in with the nurse about his day.  I started off pretending that I was interested in his weight.

“He looks heavier to me, has Conor gained any weight recently?” I asked her.  

“No, he’s at 100lbs, so he’s gained maybe half a pound since he was admitted,” she replied.

“Oh, ok.  Um, uh, ok, today I noticed some bruises at the top of his arm?  Is there a new behavior he’s exhibiting?” I stammered out.

“Well, I did a bath check tonight and I did see the bruises,” she replied calmly.  “I’d talk to the behaviorist tomorrow about any new behaviors she might be seeing.”

I could hear her flipping papers.  “As you know, he’s been a busy boy today,” she reported half-jokingly.  “He’s had 113 aggressions today.  He’s quite active.”

I politely thanked her, and hung up the phone.

113.  That’s… horrifying, is all I can say.  Just horrifying.  I mean, I know he had three temper tantrums yesterday, but when you put it like that

I could say that there are no words to describe my feelings, but, of course, I’m a writer and so I have a multitude of words.  Too many really. 

Nauseated.  Embarrassed.  Ashamed.  Horrified.  Perplexed.  Aggrieved. Depressed. Sad.  Exhausted.  Terrified. Undone. Despairing. Desperate. Puzzled. Scared. Anxious. Beleaguered. Overwhelmed.

113.  Man, that's alot.

Sunday, July 17, 2011

Sigh of relief

Tonight, I breathe a sigh of relief.  Relief that Conor’s 3 ½ hour visit home went well.  Relief that my parents didn’t have to again witness a 12 year old having a grand-mal tantrum.

Relief that the happy Conor showed up for the visit, and the cranky Conor stayed away.

Glad that the bruises have largely faded (even the one on his forehead), and the scars from the last temper tantrum are mostly mine, and mostly emotional and hidden.

To be so close to almost-normalcy for a few hours, thanks to this brief interlude, makes me feel hopeful for Conor’s future.  For our future.  At least, until the next tantrum.  Because there will be a next tantrum. I know this.

But until then, I am simply going to breathe a sigh of relief that Conor behaved calmly, and rationally, while my parents and my sister visited with him.  That he interacted with his brother without anger and resentment, and that he agreed to chat with me a little on camera.

He’s even asked me to upload it on my Facebook page, and next Sunday, we’ll sit down at the computer together and watch it.


Thursday, July 14, 2011

Just don't touch me.

I blame the nurse.  She hugged me, dammit.

I had just finished watching three people literally carry my 12-year-old son back from an outing we were on with some of the unit.  Luckily, we had only gone a block and a half.

It’s not important why he started to tantrum.  Suffice to say, it was a doozy.

I was proud of myself; I held it together.  I helped block some of the most egregious behaviors, kept my game face on, and the four of us got him safely back on the unit.

And that’s where it happened.  On the unit, Julia hugged me.  I could feel myself welling up with tears, so I quickly said goodnight and left after gathering my things.

I was in the parent lounge when I realized it.  Shit, I would have to talk to the security guard.  You know, the over-empathizer.

I tried so hard to hold it together.  I put on my very fashionable, very large shield-style Burberry sunglasses (thanks to my sister -in-law Maria for my quite nice Christmas present, love the glasses, sorry, I traded in the earrings, thanks though), and calmly presented my parking ticket to Mr. Ladies Man to be validated.

“Every time I see you, I just want to give you a hug,” Mr. Ladies Man chortled.   Just give me the damn ticket, I thought.

“I don’t need a hug.  I need a cure for autism,” I tersely replied. I held out my hand for the ticket.  Just give me the fucking ticket.

“Two words,” he replied, holding up his left hand in a V-shaped peace sign.

If he says Jesus Christ, I am SO going to snatch those gold-rimmed glasses right off his face, I thought.  I steeled myself.

“Your. Love.,” he says.

“If all it took was my love,” I tersely replied, “my son would have been cured a long time ago.”

I cried until I reached President Street, and that was enough of that. I gave myself extra crying time tonight because the scratches on the back of my wrist were still stinging.

Tuesday, July 12, 2011

Marcia Marcia Marcia

I don't know what it means for my blog, but as of today, I am officially sick of talking about Conor.

I've got to admit it, the Kennedy Krieger Institute has cured me.  They want me to tell them all about Conor, in so many different ways and times, that if I have to say one more word about him, I will vomit.

This is how I feel tonight, in my best Jan Brady voice:

Conor Conor Conor Conor, it's always about Conor

It makes me wonder... will my life ever NOT revolve around my kid with autism?

Monday, July 11, 2011

Don't smile, your face will crack.

“Hi, I’d like to get my parking ticket validated, please,” I asked as I handed my card over to the security guard at the hospital’s front desk.  I was on my way out after visiting Conor.

I’d seen this guy before.  He looked like he was in his mid-thirties, a little overweight, an open face and—you can tell by how he calls out to all the women who work there—thinks he’s a ladies man.

“Don’t worry, everything will be all right,” he cheerfully says to me as he hands the card back.  “You have such a sad expression, I mean.”

I politely gave him a small, perfunctory smile and headed out in to the humid Baltimore air.

How the fuck does he know everything’s going to be all right, I yelled to myself, in my head. For Christ’s sake, he works the front desk of a freakin’ hospital, he should know better. 

Don’t make me those types of trite promises, I want to tell him, because if it doesn’t come true, I’ll be even more devastated than I already am.  I’ve learned, over the years, to manage my expectations.  It’s better for everyone that way.

Luckily, I got half way down the block before I started feeling the tears running down my face.  I let myself cry until I reached my car in the parking garage and then choked them back. 

That’s enough of that, I tell myself.

Sunday, July 10, 2011

Organize this

I’ve spent a lot of time today thinking about what to get my husband for his upcoming birthday.  I was taking out the trash, passed our garage, and thought to myself, “He’d really love it if I got one of those organizing companies to tackle the garage full of stuff.”

You know, like on Clean House?  Sigh.  Love.

I quickly came to my senses.  That would be like buying your mother a baseball glove, my husband would say.  More a gift for me than for him. 

Kind of like the time I bought him an espresso machine.  I thought he liked espresso, but apparently I like it A LOT more than he does.

It’s hard to believe, but it’s taken me ten years of dealing with my son’s autism to realize that I’m so obsessed with organizing my stuff because it’s just so damn hard to organize my life.

The unpredictability of his autism, the disorganization of it all, is the excuse I use regularly.  Just when I think I’ve got it all figured out… BAM!  Conor surprises me with a whole new set of challenges.

He hates the sand.  He loves the sand.  He loves to cook.  He throws tantrums if we don’t have cinnamon.  He begs for playdates.  He bites the playdate.  

He won’t sleep at night.  He sleeps, at least, in my bed.  He sleeps all night, jumps out of bed, and naps during the day.

He loves the Wii, and asks Aidan to play.  Psych… he won’t share it with his brother, and is willing to fight to the death. 

He’s terrified of dogs, he loves dogs.  He hits the dog. He kisses the dog.

He loves to hike.  He won’t get off the couch.  He swims for five hours.  He gets out after five minutes.

Home school, school school.  Therapist comes, therapist goes.  Loves school, runs for the bus.  Tantrums all day at school.  He can’t wait to go back to school.  What the…?

Really, it’s exhausting just trying to keep up. 

So, I’ve given up trying to organize Conor, and I’ve dedicated much time to organizing my things. Makes me feel more normal. It’s difficult, you know, due to all the retail therapy I’ve been utilizing in the recent past. Don’t get me wrong, I’m still trying. But the shopping is getting in the way.

I downloaded a segment of Hoarders last week, and one of the people highlighted actually hoarded organizational items.  Plastic bins, hanging sweater holders, manila folders, that kind of thing.

Awesome.  Wonder how late Target is open? Maybe Jimmy would like a bin for all his polo shirts.  On second thought, no. Maybe some running gear.

Saturday, July 09, 2011

Tough love

At eleven o’clock last night, I fell into bed, utterly drained and exhausted.  And then didn’t fall asleep until 4:30am.

Don’t you just hate that?

It was a heart-wrenching day. My husband and I were asked to come down to do a “parent session”.  They’re still trying to figure out how to push Conor’s buttons.  (They have to know what’s causing the behavior in order to put together an effective treatment plan.)

Ironically, they want to see the grand-mal temper tantrum during the assessment session.

The struggle has been that while Conor’s had about 5 tantrums on the unit in the week, they haven’t been able to trigger one.  They don’t really know yet why he’s having them. The antecedents aren't too clear.

(Except for the ones related to food.  Go ahead, just try to feed him scrambled eggs.  He’ll make your day.)

If they can’t get Conor to have problem behavior during the sessions, insurance might deem him “cured” (snort) and kick him out prematurely. (snort again.) Leaving us right back where we started.

So my husband and I traveled down to east Baltimore to try to set off a tantrum.  Lovely.

Conor, Jim and I sat in an empty patient bedroom, with the four beds pushed against the wall. Three plastic blue chairs were placed in a semi circle in front of a mat on the floor. We face the two-way mirror. 

I had brought three items that I thought would be helpful—his iPad, his iTouch, and our iPhones.

And off we went.  Conor got two minutes to play with the iPhone.  Then we took it away. Then we gave it back. Then away.  Then back. He asked to download a song. Nope.  What day can he download the song?  Never.

He asked to download an app.  Nope.  He asked when he was going home.  Nope.  No, not going to happen soon.

Conor watches my husband playing with the iPad.  He glances over at me, sees me gripping the iPhone.

My stomach just churns.  I start to feel shaky.
Still no tantrum. He IS getting upset. Conor starts begging to know when he was going home.  “Be quiet,” my husband barked.  Conor begins to cry and stands up.  Begging, begging, begging to know when he was coming home for a visit.  He wants to come home so he can download songs and apps.

“Sit down,” my husband demanded.  More tears.  Conor puts his hand in his pants.  “Take your hand out,” my husband directed gruffly.  Such a mean voice, so unlike Jim.

Personally, I just sit there, holding the stupid iPhone, horrified at what we have to do to try to help our son.  I feel like I’m going to throw up.

After about three minutes of my husband just barking at Conor to sit down be quiet take your hands out no app no song, it happens.

A grand mal tantrum.

The behavioral assessment team comes into the room to help manage the tantrum. My husband leaves to take a short walk on the unit, to clear his head.  The team gets Conor calmed down after awhile.  I watch it all, a little shell-shocked.

When Jim comes back, we’re alone in this hospital bedroom.  They’ve taken Conor for a walk on the unit.  (Where he promptly takes off running and hits another patient.  Lovely.)

He’s just shown a lot of love for Conor, doing this extremely hard thing, I tell him, reaching up to fix his hair.  He just shakes his head and looks down at the floor.

Yeah, me too.  Me too.

Thursday, July 07, 2011

Home Sweet Home?

This is the living room in the Nova Scotia summer home of a couple from Los Angeles.  They are both interior designers. Got that?  This is their second home.

You can tell they don’t have a child with autism from three very simple things.

These wicker chairs are both listed as having cost $3,045… each.  That’s $6,090 worth of chairs that would be broken in two seconds by Conor’s big butt.  Plus, no one providing therapy (or wanting to provide therapy) to their child with autism could ever afford to throw away six grand on two puny wicker chairs. 

Ok, maybe a hedge fund manager, but no way two interior designers.

Although… they ARE from L.A.  Maybe they work exclusively for Tom Cruise and Katie Holmes.  Or Victoria and David Beckham. Or both. (Wait a minute, maybe these are all hand-me-downs from Madonna. They’re too simple to be from Elton John.)

The table is $950 and the chandelier is $1225.  That’s, what, $8,265 for two chairs, a light and a table aptly labeled a “Toothpick Table”?  My typical kid would destroy that table in a New York minute, for Pete’s sake, forget Conor.

And $8,265?  That’s, like, at least 413 hours of ABA therapy.  Or 82 hours of Occupational Therapy.  103 hours of speech therapy. Mon Dieu.

There’s no TV.  Where, exactly, is the kid supposed to either play the Wii or watch the numerous Harry Potter flicks? I mean, you can only put so many puzzles together, seriously.  You can’t expect a child with autism to simply enjoy the view. Can you?

Who the hell would fly from Los Angeles to Nova Scotia at least twice a year with their loved one with autism to visit their second home? 

I realize this is an unfair question, because many individuals with autism can travel quite well with their families.  But LA to Nova Scotia is an eight or ten hour travel time.  Without delays. And you would do this without being physically threatened?

What, you couldn’t find a second home on the same coast?

I would do it.  I would travel with Conor on a plane for ten hours.  To see a doctor that I think might help, mind you.   With drugs, for him AND for me.

But a second home?  Pshaw.  That’s just plain crazy.

Tuesday, July 05, 2011

Working for a livin'. Workin'.

Isn't Zach Braff so cute?

With all due respect to the direct care staff at my son's unit (I know they have a thankless job, believe me, I do, I do), if I hear one more person complain about their work schedule I am going to go all Van Gogh and lop off both my ears.  (And those that know me understand that I've got some really big-ass ears to lop off.  It won't be easy.)

Look, I know it's hard taking care of individuals with developmental disabilities.  (Lord, try raising one.)  I know they have all been extensively trained, and they behave quite professionally with the patients.  I have no complaints about that, and am thankful, so thankful that they are there. Really, I am grateful.

But I swear, these people talk about their schedules like, well, like young kids with autism talk about Thomas the Tank Engine.  Incessantly.  Loudly.  Annoyingly.

OMG, could they talk about ANYTHING else?

 I get it.  You're working for the man, making an hourly wage. It’s a really tough job. You have to come in when you're on call.  The patients can’t say “thank you”.  Often, the parents are in a separate state, so they can't say "thank you" either.  Getting holidays off is difficult. Someone's always telling you what to do, how to do it, and when to do it, and damn, Maureen won't stop playing with her spit already. 

But would it kill you to, I don't know, talk about a movie you saw or a book you read?

Here’s the rub. Visiting with my son is difficult.  Not because of his behavior (we’re used to that), but because it's hard to have a real conversation.  Quite honestly, I think he's more interested in putting on his headphones and listening to the iTouch I bring than visiting with me.  (Of course, he's all snuggly and tries to sit in my lap. Smile.) 

So I have a lot of time to sit next to him (or with his 100lb big butt on my lap), and also to look around the unit and listen to the conversations.  Most of the patients are nonverbal, so the staff talk to each other a lot.  

Ok, I admit it.  I'm nosy. And not subtle.

(One wonderful staffer was simultaneously playing hangman with a patient while talking about her schedule with the adults in the room. He was largely nonverbal but clearly loved the game.  It made me smile. I'm going to try hangman with Conor.)

It’s totally understandable.  People are social creatures.  But seriously?  

At this point, I would welcome a discussion about Rush Limbaugh, the debt ceiling, or even vaginitis, which tells you how bad it’s gotten for me. 

Please, for the love of Pete, discuss Jennifer Aniston’s new tattoo, something more than your on-call schedule. (Should she really have gotten it on her foot?  Poor dear, that thing will fade quite quickly.  Should have gone for the tramp stamp.)

One on one, the direct care staff are polite, and talk to me if I want to talk.  They answer my questions, and if they don’t know, they find out the answer. If I want to be quiet, they’re quiet.  Many are working on furthering their education and I enjoy hearing about how they came to work there. Very professional.

But the conversations going on around me?  One employee was seriously wondering… why is it, exactly, that her mom can’t watch her daughter while she was at work? I mean, why should she have to put her daughter in day care or hire a nanny when her mom is retired?  When she’s not at work, she’s with her daughter, she’s not leaving her there to go out with her boyfriend or out to a club. 

Are you kidding me?

Clearly a close friend, Conor’s clinical assistant responded that 1) it was her child, so it was her responsibility 2) her mom is just trying to have her own time, she raised her children already and 3) she better start checking people’s references if she’s going to have a nanny coming in to her home.  And get a nanny cam.

I didn’t get a warm welcome when I gave my “Amen, sister”.

Hmmmm, guess I better start focusing on my own kid. And keep my mouth shut.   

Sunday, July 03, 2011

London Calling

I had to shake my head tonight.  Unbelievable.  My son is unbelievable.

It’s been six days since Conor was admitted into Kennedy Krieger’s InPatient NeuroBehavioral Unit.  Six days in, and Conor is already starting his demands, hoping to get his obsessive itches scratched.

My husband came home today with a list of songs to download onto Conor’s iTouch. (The Clash’s London Calling and some song I’ve never heard of).  

He also would like to see the mountain puzzle with 1000 pieces tomorrow. 

For dinner, Conor wants Chinese rice, spaghetti sauce, cranberry juice, and a large lemon Italian Ice from Tropicool.  

Oh, and the puzzle catalog too… please. 

And when, exactly, is he going to get to watch the fireworks, he wants to know?

It’s better, of course, than the begging to come home. (I'm sorry buddy.)  But as the days progress, I feel the controlling and the manipulation beginning from afar, ensnaring us again despite the distance.

The ice age is coming, the sun is zooming in
Engines stop running and the wheat is growing thin
A nuclear error, but I have no fear
London is drowning-and I live by the river
Chorus of London Calling, by The Clash

Friday, July 01, 2011

I'm sorry.

“Conor looks a little sad today,” the new clinical assistant reported.  “And he’s been kind of quiet.”

“He’s depressed,” I answered.  “Last night, he realized all the things he’ll miss while he’s in the hospital.”

Seeing the realization dawn over Conor’s face last night during my visit was difficult for us both.  I could tell by the questions he was asking that he figured out he was stuck in the hospital for a good long while.

“On Saturday, Conor will…” he asked, with his eyebrows lifted inquiringly.  I shook my head.  Sorry, no boat ride with Pa this weekend.

His eyes grew wider. “On July 4th, Conor will watch fireworks…” He pointed at his chest as his voice trailed off.  You’ll get to see fireworks, I told him.  Just not at Nanny’s house. 

His hospital is downtown, so he’ll see the City’s fireworks from his window.

Then the tears filled up his eyes.  “What will Conor do on July 30th?” he cried.

Sorry bud, no beach vacation this year.  No train ride to see Grandma and Grandpa, no sand, sun and surf. No visit to see the cousins, who have so many toys that their house is more fun than Disneyland. No shopping at his favorite store, The Black Dog.  (I swear, he has at least 10 t-shirts from this place.)

“You’ll be in the hospital for a long time, sweetie, until we can help you not have temper tantrums anymore,” I said.  Christ, this is hard.

He cried harder, wiping at his eyes.  “Want Conor to have medicine to not have temper tantrums,” he begged.  He’s so sad.

Don’t have a tantrum, don’t have a tantrum, don’t have a tantrum, I chanted in my mind. Although, quite frankly, if not here, when?  They actually want to see what he does so that they can come up with a plan to fix it.

And that’s what I have to remain focused on.  Not the fun events that he’s missing, but what we’ll all gain at the end.  A plan to fix it.  Please, please, please let there be a plan that will fix it.

Remain focused.  Be strong, I tell myself.

Still, I feel horrible.  This brings a new meaning to the cliché, tough love.

“On December 24th, Conor will go to…,” he begins. 

“Conor,” I replied firmly, “I’m not talking about Christmas until December 1.”  OMG, Christmas, he could still be in this place on Christmas. 

Deep breaths, deep breaths, focus on the goal. Focus, focus.

Conor's recently discovered R.E.M., so I thought this song was appropriate.  

I'm sorry, Conor.  I'm so sorry.