Quiet, and lonely.

"Mom," Aidan called out from his bed last night.  "I don't know why, but I feel kind of lonely all of a sudden and it's really quiet."

"I think you miss your brother," I called back.  "We all do."

Without Conor's presence, our house is deafening in its quiet.  I've catapulted past the relief I feel at not having to physically manage his behavior, and have recently crept past missing his happy squeals and snuggle bunny episodes.  

(Ok, I’ll admit to still missing him. I miss the big lug.)

Now, I've resorted to wandering around our house, looking for things to occupy my time and fill the silence.  It’s funny; I have this whole to-do list but I just can’t seem to get to any of it.

My husband and I tiptoe around each other, around our anger, our sadness, our fear.  Conor’s not coming home any time soon.  He needs more intervention than we can give right now, and he’s been transferred to a longer-term, inpatient behavioral unit.

We should anticipate a six-month stay, the lead behavioral therapist told us.  We both gaped at her. 

I really don’t understand my own emotions in all this.  For so long, this is what I’ve yearned for--an extended rest, a reprieve from the grueling task of raising this child without sacrificing his treatment and supports. 

Yet, when it’s handed to me, I recoil.

“This is really, very excellent news,” the social worker at Sheppard Pratt gushed to me on the phone.  “He’ll be at one of the premier treatment centers in the nation!”

That’s the funny thing, you know.  Why it’s so hard to accept that my son gets this excellent treatment.  It’s because his behavior is so bad, so explosive.  Why he’s been accepted, that is.  And that’s really not excellent news. 

No, not so excellent at all.

Help, I need somebody. Help, not just anybody.

Having a child with autism can be a grueling, long, hard slog.  We’ve been grappling with our son’s diagnosis for ten years now, and I can tell you that it never gets easy.  It can be more manageable at times, but it’s a constant stress in our lives.

I see my friends and family wanting to help, especially during times of crisis. Sometimes, though, people just don’t know how.  So, I’ve come up with a short list of ways to help families coping with autism. (It’s especially important for families who are coping with a newly diagnosed child, or a child in crisis.)

What’s the first thing people do when a friend is diagnosed with a debilitating illness?  Deliver food.  It’s the same with autism.

When my son was in the hospital the first time, our neighbor cooked us a delicious lasagna.  I can’t tell you how many meals we got out of that dish. Heat ‘n eat, baby. Awesome.

You’d think that we’d have lots of time to cook for ourselves, but the day quickly becomes consumed with other things. I’ve discovered that worrying takes up an enormous amount of time. (Check it out: Jump start my heart)

But you don’t have to wait until someone’s in the hospital to cook a nice meal.  Having a child with autism can make fixing a meal a stress-filled juggling act.  It’s hard to cook the eggs when you have to have one eye on your child at all times.

Just remember… nothing says “I’m here for you” like a homemade sausage lasagna made by someone of Italian heritage. Abbondanza!

 Check-in often with a phone call. One of my best friends calls me every day during crisis periods.  When he’s not in crisis, she calls at least once a week.  We don’t even have to talk about autism, but having someone to listen to you really helps.
She says “yes”, “uh huh”, “it sounds so hard”, and “that’s awful” a lot. I know she’s listening.  It helps.

After all, my husband can only take so much of my constant worrying and needling.  And re-visiting.  And re-hashing.  And hand-wringing. You get the picture.

Volunteer to babysit.  Taking care of a loved one with autism is draining, physically, spiritually, and mentally. An hour to sit in a room by yourself is a luxury.  (Some days just going to the bathroom without worrying is a luxury, to be honest.) 

Ask your friend to teach you how to properly supervise their loved one and then show up as often as you can.  Personally, I find the weekends to be particularly draining, since we have all day to try to entertain Conor. 

If you’re uncomfortable watching the loved one with autism, or this person has significant behaviors, babysit any typical siblings.  It’s a gift to know that my youngest son is off having fun on an outing.  I don’t have to worry about Conor aggressing toward him or how much time Aidan’s spending in front of the TV or worse, the Wii.  And it’s respite for Aidan too.

If you can’t afford time, maybe you can afford some money.  The ugly truth about having a child with a disability is that it is ex.pen.sive.  Often, one parent has to stay home to manage things.  Good-bye second income.

Therapists, doctors, and medications cost money. Even babysitters and day care charge more for a child with a disability. If you’re uncomfortable writing a check, buy a gift card to Target or the local grocery store. Every little bit helps.

Buy the dad a punching bag.  I hear guys like to punch things, and I’m sure he could use the therapeutic benefits of really taking a wack at something.

If you’re uncomfortable giving money to the family, give money to a charity of their choice.  I’m always grateful when my friends and family support the organization that I volunteer for… Pathfinders for Autism. When Conor was diagnosed, I wished that there was a 1-800-mykidhasautism number so I could figure out what to do.  Lucky for me, someone had already thought of it.  Pathfinders for Autism runs a free resource center for parents, caregivers, providers and individuals with autism.

If the family isn’t involved in a specific organization, try Autism Speaks, the Autism Society of America, Talk About Curing Autism, Generation Rescue, the Autism Research Institute, or a number of other organizations helping our community.  Try to find one that fits the philosophy of the family you’re helping. 

Make sure you let the organization know who the gift is honoring and how to send them a notice to let them know you gave in their honor.

If you’re comfortable, invite the whole family over to your house for a casual get together. Ask what to expect, whether you have to fix special food, or how to make the individual with autism comfortable.  (And have lots of wipes available.)

It may only last 15 minutes, but hey, you tried.  And next time, it might last for 20 minutes.  And then 30 minutes.  If it weren’t for the McGurkins, honestly, we’d never go anywhere. 

And please, please, don’t follow the kid with autism around the house, turning off all the lights and ceiling fans that they’ve just turned on.  Just pay the extra nickel to the utility company and consider it a good deed. 

(Seriously, this happened to me.  We never went back.  It’s not worth the headache. That poor dad’s OCD was as bad as Conor’s.)

You can never go wrong with buying a beer.  Or a glass of Pinot Noir.  Nights out with my girlfriends are a guilty necessity.  We all need to blow off some steam and decompress after dealing with our loved one all day.  So yes, I know you’re tired at the end of the day, but just imagine how your friend feels. 

So do what I do.  Have a shot of espresso and put your game face on.  You can still be in bed by eleven.  If you want to, that is.

Honestly, just ask how you can help.  Chances are, just listening is enough.

Desperado

(

A few weeks ago, the local NPR station ran a promo about an upcoming Midday with Dan Rodricks show that featured two prominent, local experts on autism, Dr. Rebecca Landa and Dr. Paul Law. 

They were discussing the controversy surrounding Dr. Mark Greier and his Lupron treatment for nine children with autism.

Normally, as a parent, I take these things in stride.  But this promotion really got on my last nerve, as my roommate from college used to say.

The promo kept referring to “desperate” parents.  I’ve heard this before.  They’re referring to parents who, some people think, were so “desperate” that they’d try anything to cure their child with autism.

It’s usually the biomedical parents that are labeled with the “desperate” moniker.

I kept asking myself, every time I heard the promotion… why does this get stuck in my craw?  Why does it bother me so much?

Yes, of course, if you saw your typical toddler disintegrate within a few days time, you’d panic.  You’d be in distress.  It took my kid about a week to lose his eye contact, stop talking and stop sleeping.  You bet your ass we were in distress. 

Uh, hell-o, who wouldn’t be?

My beef with the word “desperate” is that it connotes some sort of crazed state.  You’re grasping at straws, silly Mommy, just accept your lot in life.  Just take him home and love him. (Say it in a sing-song voice; there, you've got it.  Check it out:  You can't always get what you want.)

Look, I have no idea whether what Dr. Greier was doing was kosher or not. There are plenty of trustworthy doctors out there trying to help parents figure things out.  I’m sure there are some charlatans who are preying on them as well. Many doctors prescribe drugs off-label, but then again...

You may not agree with parents who seek a medical answer to their child’s autism spectrum disorder.  That’s fine.  I just don’t understand why parents who do are labeled as “desperate”. 

In the end, some of these ideas we consider desperate and crazy just may have some credibility.

As Dr. Law pointed out during the show, quinine has saved his life more than once. (He grew up in Africa.)  Quinine is a drug that is made from the bark of the Cinchona tree.

Bark.  From a tree. Sounds pretty crazy to me; you must be desperate to try that.

I miss my son. Tonight.

I miss my son tonight.

I don’t miss the tantrums, the screaming, the obsessive requesting of puzzles and games.  I don’t miss the anxiety over the Wii or if the dog got out to the rest of the house or the electricity or whether the Internet remains connected.  I’m thankful not to worry about the next thunderstorm, that’s for sure.

I’m glad for the break from the constant supervision, the endless asking of the same question between my husband myself—Have you seen Conor?  Do you know where Conor is right now? Do you have Conor? Aidan, have you seen Conor? Conor, where are you? 

It’s like his name reverberates constantly against our walls.

I have actually slept until 7:15am… three days in a row.  That hasn’t happened since January 1999.  (No, I’m not kidding.)

It’s been 10 days since he was admitted into the Neuropsychiatric ward.  And I’ll tell you what I now miss.

I miss Happy Conor, squealing “Mommy!” as he runs up the front walk.  I miss snuggle time, watching Blues Clues.  Even though Conor is twelve, he is as snuggly as he was when he was two years old. 

I miss hearing his favorite Maroon 5 song blaring out of various Apple products—my iPhone, his iTouch, his Dad’s iPhone, his iPad. 

(Wait, now I know why Apple beat their estimates last quarter. I can’t help it; I’m an Apple junkie.  I take full blame. AA stands for Apple-junkies Anonymous in my house.) 

I miss bath time, with him eating the bubbles from the bubble bath and me saying, “Why do you eat the bubble bath?”  He sometimes asks me to put a beard on his face out of shaving cream, “just like Santa Claus, Mommy”.

I miss hearing my husband chasing Conor around the first floor, yelling “The Shark eats the Penguin” and listening to Conor’s peals of laughter as his dad catches and tickles him. Dad’s a Shark, Conor’s a Penguin, I’m a Fox, and, despite her denials, Aunt Lee Lee is a Cow.  According to Conor. 

(Seriously, Single Men, Aunt Lee Lee is cute and smart and single.  Call me for her number. Definitely NOT a cow.)

I even miss downloading music and videos with Conor.  Because even though it’s all tied up in the horrible obsessive/compulsiveness of it all, in the end, he picks really awesome music.  (Except the Miley Cyrus/Hannah Montana montage, but he IS only twelve so he can be forgiven for that.)

Conor’s not doing as well as I hoped, in the Neuropsychiatric Ward.  And that makes me sad.  Because I want more and more of the cute, snuggly Conor.  And less and less of the tantrummy, obsessive Conor.

But right now, it’s a package deal. We’re going to have to find out how to separate the two and get rid of the yucky part.  So we can enjoy more of the fun, happy part.

The lovey part, I miss the lovey part.

Surf's Up

Conor was just home for a quick visit.  He pulled up the latest video he's downloaded.

I'm not surprised that it features sun, surf, and sand.  The beach is his favorite place in the whole world.  A far remove from the two year old who wouldn't put his feet in the sand.

How does he even find these videos on the iTunes store?  It's amazing.

Enjoy.

Happy Happy Joy Joy

A couple years ago, I found this magnet at our local Whole Foods.  

After completing my third year of therapy (if you haven’t figured it out by now, I have issues), I decided that maybe I was just choosing to be down in the dumps about my son’s disability. 

I read these other people’s blogs about their experience, and they don’t seem, well, as dour as I feel. 

There’s so much acceptance, and love.   The total opposite of how I feel about autism taking over my son.

I’m all fight fight fight and everyone else seems to be all hug hug hug.

Maybe, I thought, I can will myself to be happy.  And there’s a lot to be happy about in my life.   

Nice house, hunky husband, redheaded freckled faced boys, great friends, good wine, delicious cheese, supportive family, a rascally pup… what was a little autism in the mix?

There are worse things, I was told.  Starving babies in Africa.  Al Qaeda in Yemen.  Earthquakes in Haiti. Soldiers maimed in Afghanistan. Kim Kardashian’s love life. Britney Spears’ parenting skills.  Lindsay Lohan’s kleptomania.

Serious, serious issues.

I know it helps some parents to think about their lives this way. It helps them to see the brighter side of life.  It just simply does not help me. 

I blame my parents.  Too much Catholic guilt.  I can’t help those babies in Africa and I’ve simply given up on Britney.  (Really, that girl just needs to stop trying already. She’s a train wreck.)

So I’ve decided.  Pass me my antidepressant and that nice glass of Pinot. Time to get my happy on.

I don't need no doctor, 'cause I know what's ailin' me.

Conor’s recent hospitalization is going to cure me of my addiction to John Mayer’s music.


Last year, I was tired of missing the phone calls from Conor’s doctors and specialists. So I found a ringtone I liked so I would know to run for the phone. And, of course, it was a John Mayer song. He does an awesome cover of Ray Charles’ I Don’t Need No Doctor. Awe. Some.


The problem is, every time the unit calls me, I (of course) hear the ring tone. And they’re not calling to say “Everything’s ok”.


“Hi, is this Alisa Rock?” Yes, it is. “I’m calling about Conor, do you have the code word?” Yes, I do. “I’m calling to tell you Conor became aggressive…”


I’m not going to bore you with the details. Suffice to say, they are required to call every time they have to put Conor in the “quiet room” (snort) because his behavior has become dangerous to himself and others.


We’ve been getting these calls daily, a couple times a day because my boy is one angry kid. Or he’s one sick kid. Or one frustrated kid. Or one spoiled kid. Or one sad kid. Who knows?


Because he really can’t tell us what’s going on inside his brain, and half the time the staff is asking me what’s making him upset.


Lady, if I knew, I would have a better idea how to fix it.


So, I’m on the hunt for a new ring tone, so I can continue my love affair with John Mayer’s music. I think I’m going to go for Panic by Sublime With Rome. Seems apt.

Here's a bad copy of a live performance of the song. John Mayer Live at the Nokia Theater

The autistic Dudley Dursley?

I have a recurring anxiety dream.  I inexplicably find myself naked from the waist up, on a busy street corner in some unknown city, frantically trying to cover my breasts with my hands (please, at least the nipples) and feeling the blush of supreme embarrassment rush up over my face.  It's mortifying. I wake up in a sweat.

This is how I felt when the psychiatrist on Conor's hospital unit spoke with us on Wednesday.

In his lilting South African accent, he asked us, "Is it possible, I mean, I don't want to be judgmental and I'm not going to use a politically correct word here... is it possible Conor is, well, um..... spoiled?"

Spoiled?  The idea sent my mind reeling.  And there it has lodged itself, rolling around in my mind like an errant marble. Is it possible?  Is he tantrumming all the time because we've spoiled him?

If there is one thing I set my mind on when I was pregnant, it was this:  my child/ren will not be spoiled.  They will be nice, polite, well-educated, well-mannered, respectful children who are, at the same time, strikingly handsome, articulate and athletic. (Just like their dad.)

Could it really be that simple?  The ruin of the character of my child through overindulgence? (Yes, I'm a dork and I looked up the definition.)

The issue is that Conor has a hard time hearing and accepting the word "no".  He wants what he wants, when he wants it. We've struggled with this the past two years. 

I’ve asked myself, over and over--where does this disability end (it's well accepted that children with autism have trouble being flexible, making transitions, and waiting patiently) and spoiling begin?

In the doctor's defense, he'd only observed Conor for a day at that point.  And the last time he was in the hospital, the doctor started off asking if we thought Conor was hallucinating.  (He wasn't.)  So these are preliminary ideas he's floating around.

Once I'd gotten over the initial blush of embarrassment and spent a few days mulling this thought, I've come to this conclusion.

Not to be defensive, but I don’t think it is that simple.  Like most parents of children with autism, I'm used to strangers thinking kids with autism are spoiled. 

We've all heard the comments... all that kid needs is a good spanking.  They're not disabled, they're spoiled.  I've got a belt in the car if you need that. Blah blah blah.
(If I ever see Denis Leary, I am seriously going to kick his ass.  He should consider this his warning.)

But a doctor?

We require Conor to ask to be excused from the dinner table, and he takes his dishes to the sink independently.  He'll help you cook dinner, happily set the table properly.  He helps my husband take out the trash, and he actually enjoys doing the laundry with some assistance.  He used to make a mean espresso, and feeds the dog when asked.

Conor dresses himself each day, takes good care of his retainer, and makes his bed each morning.  Carefully hangs his jammies on the hooks and has to put his backpack in his cubby when he comes home from school.  (Ok, he may need reminding about that, but still, so does his brother. Don’t get me started with the shoes.)

It doesn’t seem to me that a parent intent on spoiling their child would care about these things.

If only it was that simple.  Then we could just throw him in an intensive behavioral program and voila… improvement. I hope that will be the case.

Two days after our conversation with the psychiatrist, I ran into an old friend at the Eddies on Charles Street.  My friend helped me with the biomedical side of autism treatment with Conor many years ago, and her advice was invaluable.

With tears in my eyes, I told her about Conor being in Sheppard Pratt.  “Mood disorder,” she immediately stated. (Of course she knew, without even being told.)

“Baclofen,” she advised.  “A psychiatrist I know is using it to treat children and my son has been on it for the last 6 months and has improved immensely.”

“But our psychiatrist asked if Conor wasn’t just spoiled,” I tearfully replied.

She placed a gentle, firm hand on my arm.  “We both know that isn’t true,” she said.  “Baclofen.  I’ll email you.”

Here's a video of Conor during the three years he didn't have any tantrums, aggression or self-injurious behavior.  We must have stopped spoiling him for three years and started again when he turned eleven. I think he's nine in the video.  

The gift that keeps on giving.

Lately I’ve heard some people say that autism is a gift?  

I don’t think so, because I can’t find the gift slip to return it?  

I think Conor would rather have a basketball and a new pair of shorts, so I’d like to give it back.  

Except I don’t know who gave it to him, so I can’t ask them for the receipt.

I asked the sales woman at Kohl’s about it, because I hear they have a really liberal return policy. Plus, their stuff is really affordable so I could get Conor a lot of new clothes, since his autism gift was so huge. 

She whispered to me that they wouldn’t accept returns of autism because they can’t give that shit away.   

Jump-start my heart.

Today we put my son in the NeuroPsychiatric InPatient Unit at Sheppard Pratt for the second time in less than a year. My sister told me I should take some time for my husband, Aidan and myself.  It's time to regroup, recharge, recover from the past months that have led up to his hospitalization.  I love her for this.  It's really good advice. 

At the same time, however, it's just so hard to do.

My days are filled with other things, now that Conor is in the hospital.  There are the crying jags during the day, which ruin my make-up so the tedious re-application all through the day gets a bit much.  Thank god I'm not a celebrity, or the paparazzi would have a field day.

Then there's the staring blankly at the wall, wondering how we got here and why the hell do men keep tweeting pictures of their penises to women who don't seem remotely interested? I mean, hello, what happened to buying a girl some dinner first?

I can't figure out the carpool line at my younger son's new camp.  I've signed him up for a bjillion hours of camp this summer because I didn't know what was going to happen with his brother.  These other women in line get really pissed off if you don't know the carpool line etiquette.  Especially the Grandmas. (I found this out the hard way.)

There's all the time I spend feeling guilty for wanting to read a book.  So I re-organize the closets.  Again.  For the millionth time, my husband is left yelling "Where the hell are my boxers, Alisa, did you move them AGAIN?". 

What can I say, honey, I'm a "producer" personality, I have to have SOMETHING to do.  I can't just, you know, sit by the pool and read a book, can I?

What I can tell you is that I have already emailed a few of my closest girlfriends and have suggested a night out.  I think I need it. Luckily for me, Sue, Laura, and Lize are always up for a drink.  

We don’t even need an excuse, baseball/lacrosse/soccer/husband schedules allowing.

Visiting hours are from 5:30pm – 7:30pm, so I have lots of time to nurse the hangover I have from drinking two glasses of red wine the night before.  What can I say?  Two glasses of Bogle’s Pinot Noir make me feel like I’m wrapped in cotton and life doesn’t hurt as much as it did before.  (I know, two glasses=lame ass. At least I’m a cheap date.)

In all honesty, admitting my son to the psychiatric ward of a hospital is one of the hardest things I will ever have to do in my life.  Even if I know he needs it.  (He needs it. Oh boy, does he need it.)

In addition to the sheer emotional hurting, there are psychiatrist meetings, blood tests, medical procedures, and having to assuage the pain of all of our extended family. Much as we may feel differently, we don’t have a monopoly on loving Conor.

There are logistical problems, camp to alert, school to inform, therapists to manage, and questions about what to do next.

There’s the wondering and worrying about what will come next.  What will Conor be like when he gets out?  Will he be on more medicine?  Less medicine?  God forbid, the SAME medicine?

Will he be better?  The same?  Different? 

Where do we go from here?  Does anyone know?  Because I’m tired of trying to figure it out.

I'm sorry, the doctor can't see you right now.

I don’t know what is scarier--having the school call and say that my son needs to be hospitalized again because of the severity of his behavior, or the hospital saying they don’t have any beds available.

It’s at times like these when I just sit in my kitchen chair, look blankly at the wall and wonder… what did I do so wrong that this is what our lives have become? 

I must have done something wrong.  Something to either cause this or even deserve this. You know, some sort of cosmic retribution.

I thought we were doing all the right things.  But maybe I wasn’t strict enough.  Maybe I was too strict. I bought him too much stuff, I guess.  Or, I didn’t buy him enough stuff, the right stuff.

I shouldn’t have been so focused on keeping my house clean. (I’m no neatnik but I will admit that I like my house to be somewhat picked up. It’s my own perseveration. I look at the pictures in Dwell magazine and just sigh.) I should have spent more time one on one with my son.

I pushed too hard.  No, I didn't push hard enough.

I knew we should have tried that hyperbaric oxygen therapy.  Run different blood tests, tried more medicine, better medicine, more alternative medicine.

I should have gotten him together with more of his typical peers.  Oh, we did the dyads and the triads, various social skills groups and the like, but I should have done them more often, more intensively. So maybe he could model good behavior.

Maybe I should have gone to more conferences, read different journals, subscribed to different listservs, done more therapy. More ABA, better ABA, more therapists, different therapists, more OT, more Speech.

I should have worked harder, done something more, something different to help my family. 

I shouldn’t have taken that job. I should have stayed home and focused, focused, focused.  If I hadn’t been spending 40 hours a week trying to raise money to send Baltimore inner city public school students to college, that would have been 40 more hours a week to spend trying to help my own child.

I simply just do not know how we wound up here, how I could have prevented it, and what to do to fix my son.  Just tell me what we did wrong, and we’ll fix it.  We’ll fix it.  We have to. 

We have to fix it.

Love at first sight.

With all the flap about Congressman Weiner's, well, wiener, my husband decided to send me a picture of himself to show me how much he loves me.  I guess he feels left out, since sexting seems to be the thing to do.  Except he doesn't tweet and we don't have text messaging, so he emails me his picture instead with this note--"Just to keep the camp fires burning. Note: someone put an unknown head on my pic."

Well, I guess I had to send something back.  My single friend tells me that men do this in order to get a picture of you back.  I had no idea. We've been married for 14 years so I'm a little out of the dating scene.  It was 100 degrees in Baltimore today so I sent him this picture of me cooling off.

Yeah, I know, isn't it funny? As if I look like that.  

Well, it's a good thing I married the funniest man I ever met because I'm here to tell you that if you think co-parenting a typical child is hard, try it with a child that has a severe developmental disability.  It's a challenge on a good day. (Yes, gentlemen, funny is very hot. I’m sure Brad Pitt is quite a hoot.)

Oh, it's not been all champagne and roses.  There have been one or two nights when the guest room came in handy, for either one of us.  We’ve had our fair share of “discussions” and “constructive criticisms,” but in the end, he knows I’m always right.

But if it ever comes to the point where it doesn’t work out with my funny man, I’ll start stalking my second favorite funny man.  Isn’t he just dreamy?  Hotter than Brad Pitt, ladies...

Isn't Jon Stewart just dreamy?

Thanks, but no.

No, that is not really me.  I was bigger.

When I was 7 ½ months pregnant with Conor, I put my hand on my huge belly (I had gained 40lbs, I guess that explains the stretch marks) and proclaimed to my mom that I thought I could handle anything, even the death of my child, except autism.

My mom frowned at me, pursing her lips in a disapproving way.  She shook her head. “Plenty of people love to work with that population, Alisa,” she declared.  

(She worked for a nonprofit that provides day habilitation, vocational and support services for adults with cognitive disabilities.  Many have autism as well. My husband travelled a lot so I had lunch with her often at her office.)

“I think that’s great, Mom, that people take on that work, “ I replied.  “But I don’t think I could handle it, my own child.”

I had seen a TV report about autism just the day before.  It may have been on 60 Minutes, I’m not sure.  I do remember the beautiful towheaded boy and his mom.  He screamed every waking moment of his life.  (Was he five years old?)

From the time he woke up until the time he went to bed, he screamed.  He was nonverbal but vocalized constantly.  It was awful.

And his mom, she worked so hard.  You could tell from the tiny segment of the 60 Minutes report, she had the patience of a saint.  Me, I have the patience of a two year old.  Yeah, it’s not one of my virtues.  (My family and friends will happily confirm that.)

So I’ve often pondered what this all means, being handed the very thing I knew I couldn’t handle.  The one thing I just did not want.  And it’s turned out to be just as hard as I feared. Different than that boy, but just as hard.

If I believed in a god, I would say s/he was testing me, trying to prove to me I could handle it.  But I’m agnostic (leaning toward atheism), and I can’t.  At least not very well, most of the time.

I pretend to be a Buddhist sometimes and I guess they would say it was some bad kharma.  But basically, they would leave it up to me to figure it out through meditation.  And burning incense. (To cover up the smell of the pot.  I kid, I kid, totally not serious, don’t call my mom. Or the cops.)

I’m not sure why I was handed the exact thing that I feared.  With 1 in 94 boys now diagnosed with autism spectrum disorder, I guess the appropriate question is, why not me?

Oh, just shut up already

Every parent of a nonverbal child will smack me (as they rightly should, I know this) but sometimes I wish Conor would just shut up already.

My son is verbal, but most of the time his language isn’t very useful.  

It’s scripted, echolaliac, in a loud falsetto, like a bad young Michael Jackson voice.  

He’ll yell incomprehensible stuff at the Wii or repeat entire scenes from The Lion King at the top of his lungs. 

If he’s upset, he’ll request impossible thing after impossible thing, to the point where you think--just go ahead and hit me already. I can’t take anymore.

My son is very obsessive/compulsive.  Right now, I am officially labeling him with Obsessive Compulsive Disorder (OCD) on top of the autism, Tourettes and mood disorder.  He’s been this way ever since he’s regressed.    Now that he’s verbal, the demands to do something to scratch that itch can be unceasing. And, largely, unobtainable.

“Want to call the Mayor and have the streetlights to blink,” he’ll command.  Um, yeah, I’ll get Ms. Stephanie Rawlings-Blake right on that Conor.

“Want to buy an iPod Touch for Mehra,” he’ll demand.  (Mehra is a girl from camp a few years back that he developed a crush on.  I should say that we last saw Mehra three years ago and have no idea, really, who she is. I’m sure as hell not buying her an iTouch.)

“An iTouch is really expensive, Conor,” we reply. “Want Conor to have a million dollars,” he says in return.  Yeah, sure buddy. Better start buying Lottery tickets tomorrow.

“For Christmas, Conor wants a puzzle with 6,000 pieces for Tika,” he wails.  It’s June, Conor.  And Tika is a character in a book.

“Conor wants to buy a clock for 222 Ridgewood,” he orders.  We have no idea who lives at this address, but for some reason he’s totally hot to get in there.  They must have one of those “Big Ass” ceiling fans.  My boy is crazy for ceiling fans.

Today, my husband and I worked hard for the entire 40 minute drive back from my parents’ house to calm Conor and get him to sit quietly without demanding unobtainable things.  These demands often precede a tantrum, so it’s not just that we don’t want to hear what he has to say for 40 minutes straight.  We’re trying to head off the tantrum.

I’m actually quite grateful for my son’s language, to be honest.  He can tell me he loves me, which he does, and he can tell us where it hurts, at least most of the time.  We can have a back-and-forth sometimes, which is nice, but a real conversation is extremely rare.

And I know it’s selfish of me to wish Conor would not say these incomprehensible things. I know it is. There are so many parents out there who long for just one or two words, I know I’m being selfish. 

So I’ll just have to relish the silence after Conor goes to bed tonight.  And hope that, tomorrow, he’ll be able to tell me he loves me.  And then be quiet for five minutes.  Just five minutes, Con, just give me five minutes to finish my coffee.

Conor, Cubed

You know, I try really hard to be prepared.  To keep everything together so that our days go smoothly.  

I make lists and post them on the refrigerator.  I’ve put together a nightly routine to make sure the morning routine is seamless.  

I’m like an Olympic figure skater, I’ve got so many routines. Plug in the iTouch, make the lunch, check the backpack, find the sneakers, fill out the communication book, skip the homework, set out the uniform, check the laundry, drink the wine. 

I’ve got calendars and reminders, iPhone apps and alarms beeping at me throughout the day.  My sisters know to send email reminders.  I call people to follow up and leave voice mails when I can.  I’m like a really persistent (but nice) telemarketer.

 

Sometimes, though, no matter how hard I try, life keeps throwing curveballs at my head and I can’t get out of the way fast enough. 

This morning goes seamlessly at first.  Get the little kid dressed, breakfasted, and on the bus. (Little kid bus stop is ½ mile away and yes, I drive there.)

Race home to help the hubby get Conor finished. And behold, we are ready to get on the bus fifteen minutes before its intended arrival.  I sit on the porch to surf my iPhone and wait for the bus.  Conor’s inside, playing the Wii while he waits.  Great.  Routine, love it.

Five minutes later, my husband comes outside.  Bus company called.  Bus driver has been in a minor fender bender and the bus will be late.  Ok, I say calmly.  How late?  Don’t know, he replies.  They’re waiting for the police.

Ok, it’s Baltimore and we know the po-po doesn’t show up quickly unless there’s a gun involved.  We brainstorm with the school and decide to tell Conor the bus is “broken” and we have to drive him to school.

Caterwauling and gnashing of teeth ensue, mostly by Conor.  I ramrod him into the backseat of the car and take off, all the while Conor crying, “WANT CONOR TO DRIVE THE ACURA!  WANT CONOR TO DRIVE THE ACURA!” 

I’m terrified this means he will jump into the front seat with me and slam the car into park or something, but he holds it together.  Barely.  The longest three miles of my life.

I struggle with this issue almost daily with my son.  No matter how much I prepare and organize, no matter how many lists I make or phone calls I place, no one can control everything.  He’s got to learn how to roll with things. He just does. Life is unpredictable.

But my kid, he’s no roller.  He’s more like a cube.  Sometimes you’re able to push him into rolling over, but it ain’t pretty and you can tell it’s uncomfortable.  And I’m not sure how you turn a cube into a ball, but we’re just going to have to keep trying.