Holy Moses

A couple of weekends ago, Conor requested paper and pen and sat down at the kitchen table to write.

He made four columns.  At the top, he wrote down the names of his in-home aids on Saturdays, Sundays, Tuesdays and Thursdays.  He then proceeded to make four lists.

“What is he doing?” I asked my husband. He was sitting at the table, watching Conor with fascination.

“I think he’s writing down his schedule of activities, but in some sort of acronym form,” he replied with a sideways smile. 

(When the aids come to hang with Conor, he writes a schedule of activities.  It keeps him structured and engaged, and he knows what to expect. Plus, it gives him some control over things while having him practice the fine motor skills involved in writing. Win, win, win, win and win.)

Oh, how cute, we thought.

Pb=Play Basketball.  AAC=Arts and Crafts. CSF=Cook Something Fun. TBTLIY=Throw Balls To Linus In The Yard.

“Wow,” I said.  Just, wow.

Man, there’s so much in that brain, despite its faulty wiring.

And then, he requested tape so he could post it on our refrigerator among the many dot-to-dots that he’s completed.

Little did I know that I had just posted the Ten Commandments of Conor’s schedule with his aids.

Do you think Moses’ mother was surprised when she saw the Ten Commandments?  Did she understand what they were? Did she know that you don’t mess with the Commandments? EVER? (I mean, they’re etched in stone, that’s gotta be a big clue.)

“Moses, why did you do that in stone, don’t you think you might want to, I don’t know, change it up once in awhile?  I mean, really, is it that horrible to covet another man’s wife?  It’s not like you’re really doing anything.  Just thinking, after all.  You don’t even say it out loud.  And, you might want to add another commandment later.  You never know.”

I’m not sure if Moses’ mother felt his wrath when she tried to mess with his missive.  Me?  I had no clue what I had just witnessed. But Conor certainly showed his displeasure when I tried to insert Walk On Treadmill into the schedule on Tuesday. (Tuesdays with Meredith.)

WOT=Walk On Treadmill. Just pencil it in, Conor, really.  Between Pb and WW, honestly. 

(WW=Windex Windows.  He’s on a Windex kick.  I think he gets a buzz off of the smell. Hey, whatever gets you through, baby.  Whatever works.)

Lordy, you would have thought that I tried to take out “Remember the Sabbath day”.  The stomping and the screaming and the crying and carrying on. He never did have a full-blown tantrum, but man, we came close.

And then, at the end of an hour of upset, my husband finally got Conor onto the treadmill for five minutes.  Conor then leapt off the treadmill, ran downstairs, went to his commandments and crossed off FTF (Feed The Fish) and penned in WOT.

Whew.  Better get that engraved in there ‘cause I’m supposed to be getting him on the treadmill every day.  (Doctor’s orders.) 

Too bad, little fishies, you're not getting fed any time soon. At least, not by Conor during his time with his aids. You've been replaced by WOT. It has been decreed.

It all makes me wonder, though. Did Moses put in Honour Thy Mother and Father just to shut his mom up, you think?

Pondering The Imponderable

Sometimes Conor asks the most profound questions.  It's amazing, really. Days go by, sometimes even months, and we'll hear only sentences that start with the words "I want". 

I want a Demi Lovato music CD.  I want to set the table.  I want to play shark.  I want to play the Wii. Conor wants to go to Whole Foods. You want to download a song. (He still mixes up his pronouns and refers to himself in the third person sometimes. We've been working on this... forever.)

I want, I want, I want, I want.

Yet, once in awhile, my son will bust out with a question that simply blows my mind.

"Mom?" he piped up from the backseat today in his singsong falsetto. We were on our way home from a session at Kennedy Krieger, where we were practicing the art of chillaxin'. (They're teaching him Relaxation Techniques. You know, to "help with the hitting" as he calls it.)

I guess he had a lot of time to ponder the ways of his world.

"Yes, sweetie?" I replied, expecting a question about his upcoming outing or a request for sweet potato for dinner.  Again.

"Mom?" he repeated.  "Why does Conor have to put the seat up when you pee and then put the seat back down?"

Well, Conor, it's like this...

Call Me!

I'm sitting by the phone, waiting for a guy to call. I haven't done this since I met my husband.

I keep asking myself, why doesn't he call?  We had such a great time.  We laughed, shared stories. It felt so comfortable, like we had a connection. We have so much in common. Experiences with kids with special needs.  He enjoys reading, too. We even vacationed at the same beach in Rhode Island, but at separate times.  Crazy world, isn't it?

I thought he'd call by now.  I mean, we emailed back and forth a couple of times, but I figured he'd want to talk things over again in person.  Go over dates, and times, and... well... expectations.  Not that I was going to ask for a long-term commitment.  Oh no, I've learned not to ask about THAT at the beginning of a relationship.

No, just take it day by day, week by week.  Get a feel for each other, see if things are going to work out.  Look, I'm not looking for a commitment either.  I don't even care if he sees other people.

I mean, I knew when I made him the offer that he already had another full time job. I'm willing to share him.  All I want to say, I guess, is... give us a try.  Be Conor's in-home aid for a few months.  Don't let our past record of therapists and aids coming and going stand again me; it wasn't my fault.  (At least, that's what I tell myself, late at night.) They were young; I'm a stress case, I know that about myself.  Maybe I was too clingy.  I hover, I can't help it.

I just wish he would be honest with me.  So I can know whether to start looking again, searching for Mr. or Ms. Right, if only for Mondays, Wednesdays, and Fridays from 3pm - 6pm and maybe even a paid beach vacation?

It's not me, right?  I'm not a loser that nobody wants to work for, right?

Call me, ok?

What Goes Around, Comes Around

Yesterday, I received a text message from my husband.  He was checking in, since he took Conor to his outpatient session at the Kennedy Krieger Institute while I picked up Aidan from school.

He wrote—

All is well. Jenny V. from school is in the room next to Conor.  She pinched C when she saw him.

Hmmmm.  Another kid pinched my kid. Should I feel mad about that?  

I shrugged my shoulders and replied--

Well, payback’s a bitch, and Conor’s built up a lot of bad karma over the last two years, I figure. 

Guess it's time for my boy to start doing random acts of kindness before all his bad karma comes back and kicks him in the ass. Literally!

Moneybags

Today my husband and I introduced a new token system to Conor.  Well, technically, we introduced another token system.  He already has three. (Don't judge.)

The thing is, we think Conor's gaming the system. (No, not like Rain Man, silly.)  He's figured out that he can have one, if not two, tantrums per week and still earn his Superstar outing.  (My boy loves himself a community outing, yes he does.)

As a matter of fact, I think he's figuring out what time to have the tantrum to minimize the number of tokens lost. My boy may have a developmental disability, but he is smart.

See, he gets these tokens on the hour.  If he starts tantruming at, say, 5:20pm and he tantrums until 5:45pm, he actually loses two tokens.  (One for the 4:30-5:30 hour and one for the 5:30-6:30 hour.) But if he can just hold himself together until 5:35pm and stop before 6:29:59pm... he would have earned the 5:30 token and only lost the 6:30pm token. (I know, it's mind-blowing, isn't it?)

Of course, I could be full of shit and it's all coincidental, but that's beside the point.

We thought Conor needed an additional incentive to have zero/zilch/nada/no/not-even-one tantrum during the week.  So my husband had a brilliant idea.

Money, baby.  Coin. Greenbacks. Pictures of dead presidents. Cheddar. Moola. We're talking duckies, man.

Nothing motivates Conor more than his weekly allowance.  He is a shopaholic.  The behavioral team at Kennedy Krieger Institute's NeuroBehavioral Unit actually put him on a budget, and I can not tell you what a difference it has made in our lives. (Thank God he's the only one that got put on a budget.  Just sayin'.)

So, if Conor earns every single one of his Superstar tokens during the week, he now has the potential to earn three extra dollars.  If he earns every token during the weekend, he can earn another $3.  So, if he goes from Monday morning to Sunday night without one single, solitary, individual tantrum, he gets an extra $6 that week.

(You can tell my husband was a banker.  He knows how to structure a good bonus/compensation plan.)

Six extra smackers.  Do you know how many pencils a pencil-addicted thirteen year old boy could buy with six extra bones?  Plenty.

"What do you think about that, Conor?" my husband asked at lunch today when he explained the idea to him.

"Conor will stop the hitting," he replied, eyes aglow with the prospect of earning a bonus every week.

Hell, Conor, if that's all it takes, I would have bought you off years ago.


R.I.P. Don Cornelius

Pretty Woman, Don't Walk On By

Tomorrow, my oldest becomes a teenager.  He’s stinky, has jock itch, small acne blooms on his nose, dandruff, and roaming hands.  

So attractive, I know, this road to becoming a man.

Despite having a communication disorder that results in large deficits in his social skills, I have complete confidence that my boy will have an easy time meeting new lady friends.  After all, he’s been putting the moves on his female therapists for years, and he’s got his rap DOWN.

And he's not shy.  Oh no, not my Conor.

“HimynameisConorwhatsyourname?” he splurts out quickly at pretty women he spies passing by on the street.  (Overwhelmingly, they are exceedingly nice. Despite his progress over the years, you can easily tell that he’s not typical.)

Quizzically, they look at me.  Inwardly, I sigh. I’m used to being Conor’s interpreter. I repeat his question.

“Oh, my name is Andrea,” she might say with a smile.

“HowoldisAndrea?” he’ll quickly retort, pointing his finger at her.

“I’m great!”  Big smile.  No, I clarify, he wants to know how old you are.  He’s hard to understand, in his quick falsetto, fast as machine gun fire.

“WhensAndreasbirthday?” he’ll say, pointing at her again.

“June 14^th!”  Gosh, this gal caught onto Conorese quickly.

“Ok, Conor,” I’ll say.  “Let’s get going!”  Big, fake smile.

“Andreadoyouhaveapet?” he continues. Oh Lord, take me now.

“I have a dog!” she replies.

“Andreawhatsyourdogsname?” he asks, still jabbing his finger at her.  Now I can really feel the embarrassment coming on.  How much longer do we have to talk to this complete stranger, nice as she is?

“Peaches,” she smiles.

Conor looks away.  He’s lost interest in the conversation and, thankfully, mercifully, he’s ready to move on.

Thank you, I mouth at the pretty woman.  She looks like a mom.  In any case, mom or not, she gets it.

If accosting unknown pretty women on the street doesn’t work, Conor has his back-up plan.  Today, I saw him sneak a kiss on the arm of the buxom behavioral therapist at the Kennedy Krieger Institute. 

Dude, whoa, slow down, you just met this girl last week! How about buying her dinner, or at least a drink first?


Look at how young Bruce Springsteen is in this video!

Gotcha

He had a tantrum last night.

The forks on the table didn't match, so he set the table incorrectly, on purpose.

I made him set the table correctly.

I think I'll set the table tonight.

Oh!  Note to self: Looks like I need to remember to cut Conor's fingernails. And next time... duck.

Take That, You Snot-Nosed Kid

This week, I became THAT parent.  If you're a teacher, you'll know what I mean.

Conor is sick, and I've sent him to school every day.  That's right, I have sent my hacking, snotty, tired, soon-to-be teen to school.

It’s not because I don’t want to take care of him.  I do.  Honestly, he slept from the moment we dropped him off at school yesterday until the moment they called us to pick him up. Are you kidding, a whole morning of Conor just sleeping and laying around the house? Score some mom points AND get the filing done? I'm all over that.

No, you know why?  I've become a wimp.  A wuss.  A pansy.  Weak-kneed.  Spineless. Cowardly. A fraidy-cat. A weakling.

Despite his head cold (no fever=no flu), Conor insists on going to school.  In my heart, I know he should be home, on the couch with a box of tissues, a fleece blanket, and copious amounts of napping and TV watching.  I have no idea why he insists on going to school when he just sleeps there, but he is determined. Determined, I tell you.

“Conor,” I say gently, “don’t you want to stay home from school today?  You’re sick. You can watch Phineas and Ferb all day or listen to your music.”

“No!” he wails insistently.  “Conor’s going to school today,” he says, smacking his open hand on his chest.

“How about going in late,” I cajole him.  “You can go in for lunch and art therapy, then come home.”

“No!” he squeaks loudly.  “Conor’s going to school today! Conor’s not sick!”  Cough cough sniff cough. He lifts his hand for a high five. (I’m not high fiving him; I’ve seen what’s been wiped on the backs of those hands the past few days.)

I don't know if keeping him home would mean a tantrum, or just a day of endless whining.  Either way, I'm not up for that. See what I mean?  Spineless.

If I were stronger, an actual vertebrate, I would insist that he stay home and just deal with whatever he would throw at me--books, pencils, lamps, tantrums. Bring it on.

Listen, I would say. You will stay home from school, lay on that couch, watch TV, drink juice, take a nap and BE SICK at home, goddammit. Or ELSE!

Grease Is The Word

“Mom, why does Conor hate me?” Aidan asked quietly after Conor had a particularly bad tantrum last year.  I could hear the hurt in his voice. 

Conor would often target his little brother with aggression.  Aidan, on the other hand, used to say Conor was his best friend.

“He doesn’t hate you, sweetheart,” I assured him. “It’s just… he’s just going through a hard time right now.  He loves you.”

“How do you know, Mom?” he asked. “How do you know?”

“Because he’s your brother, honey,” I replied.  “He just can’t tell you that.  But I know he does love you.”

Then I would regale him with stories about how my older sister and I would fight when we were young.  How we struggled to get along growing up, but that we became friends as adults.

I told Aidan that once, when I was not much older than he is now, Aunt Nanci took my Grease record, took it out of the sleeve, and put it under the living room rug so it got scratched and unplayable. I swear she did it just to be mean, but she maintains that I listened to the record obsessively, unceasingly, endlessly, and drove her to sheer, stark-raving madness.  (Who can listen to the Grease soundtrack too much?  I mean, Grease is the word. It’s got groove, it’s got meaning. Grease is the time, is the place, is the motion. Grease is the way we are feeling, for Pete’s sake.)

“That was really mean,” he replied.  I could tell he thought it was a little funny, too.

“Yes, it was,” I said, “And I’m sure I listened to the record too much.  But my point is that hopefully this tough time won’t be forever.  And you and Conor will become friends again.”

I tell him that just because his brother didn’t (couldn’t? wouldn’t? won’t?) tell him that he loves him, that doesn’t mean he doesn’t love him.

And then, at bedtime, I sang him the song I made up years ago, for both my boys, to know that they are loved, and that we belong together as a family.  (Aidan asks me to sing it every night when I put him to bed.)

To the tune of “Jesus Loves Me”.

Mommy loves me, this I know

For she always tells me so

Tucks me in and sings a song

Lets me know that I belong

Yes, Mommy loves me, yes, Mommy loves me

Yes, Mommy loves me

She always tells me so.

Daddy loves me, this I know

For he always shows me so

Coaches soccer and runs along

Lets me know that I belong

Yes, Daddy loves me, yes, Daddy loves me

Yes, Daddy loves me

He always shows me so.

Conor loves me, this I know

For my mommy tells me so

Plays the Wii and runs along

Lets me know that I belong

Yes, Conor loves me, yes, Conor loves me

Yes, Conor loves me

 My mommy tells me so.

Linus loves me, this I know

For he always shows me so

Wags his tail and runs along

Lets me know that I belong

Yes, Linus loves me, yes, Linus loves me

Yes, Linus loves me

He always shows me so.

Ain't No Other Man

Tonight is my 15^th wedding anniversary.

On our wedding day, Jim’s cheeks were rather flushed.  At first, he blamed it on the pick-up basketball game he participated in that morning with his buddies.  (One opponent was an ex-Towson University women’s varsity basketball forward who kicked everyone’s butt.  I just had to mention that.)

Then he said he was under the weather, a little sick.  Yeah, I replied, laughing at him.  Sick with fear.  And up the aisle we went.

Don't we look great? I thought the red added a little "punch".
I've been doing pilates; can you tell?

Little did we realize what we would have to navigate through, together.  It’s been quite the decade and a half.  Eventful in a bittersweet way that I could never fathom. All I can say is that I’m glad I married the funniest man I met because we’ve certainly needed some humor to deal with all the drama and sadness and stress over the past decade.

So… I’ve been racking my puny, addled brain for weeks trying to figure out what gift to give him. 

What do you give the man who has stuck by your side through the grief of an autism diagnosis, the grueling years of 1:1 in-home instruction and behavioral therapy, dealt with tantrums and upsets, who drove his family countless miles and hours to doctors and specialists and more doctors and more specialists? (Don’t forget the conferences I “suggested” we attend.)

What do you get the guy who sacrificed his career and ambition to focus on his oldest son’s education and therapy? Who takes his fair share of sleep-deprived nights and almost single-handedly toilet trained a child with autism with some pretty serious bowel issues?  A man who taught his son with autism to sit appropriately in a restaurant and have a meal, to fly on an airplane, to ride on a boat, ride a bike, swim like a fish, and refused to sit in the house all day with Conor even though the stress of taking him into the community often drove me to tears.

And that's not the half of it.

The 15^th wedding anniversary present is crystal.  I know, seriously, crystal?  We get THIS FAR, through ALL THIS, and I’m supposed to buy him a Waterford vase?

Shyeah, AS IF. 

No, instead I bought one of those “couples” gifts, of course. Something we'd both get a kick out of.

What else? Lingerie. 

Lingerie is, after all, the gift that keeps on giving. (Hopefully, more than once. ;-)

Win-win, I think.