Fly like a bird

A while back, a friend told me about her theory on co-parenting roles. Children are like fledgling birds, she thought. It’s the dad’s role to make sure that they become independent, so they begin to push and push and push the fledglings out. 

It’s the mom’s job to nurture the fledglings, always checking to make sure they are ready and able. 

After all, she told me, just because you push them out of the nest doesn’t mean they are ready to fly.

For parents of children with autism, like me and my friend, giving our kids the skills they need to make their way in the world, and then the inevitable pushing them out of the proverbial nest, can be rather daunting.  It can take hours and hours (years and years) of intensive teaching to give them the smallest of skills.

It’s quite remarkable, really, how much our typical kids can absorb, like water soaking into a sponge.  Effortless. At the same time, some concepts are just so abstract and difficult, it’s a wonder kids with autism get them at all.

I discovered this when I tried to teach Aidan (my typical kid) the concept of yesterday, today, and tomorrow when he was young.

Think about it.  It’s actually quite difficult.  Aidan, who learns everything lickity split (it’s shocking, really, how quickly), took forever to figure this one out. 

“Is it tomorrow Mommy?” Aidan would ask.  No, sweetie, it’s still today.  “Is it yesterday yet?” he’d ask in the morning.

(Of course, he’s nine years old now, so I’m waiting for the questions about sex, which will be even harder to answer I’m sure.)

For typical kids, it’s almost as if just breathing and being is enough for them to learn and develop.  For those with autism, many, many things have to be painstakingly taught, step by step. If the concept of yesterday, today and tomorrow is hard for typical kids, imagine how hard it must be for kids like Conor.

(Except for the computer.  Conor picks that up so quickly.  It’s such a cliché, but it’s true.)

It’s amazing how many steps are involved in brushing your teeth.  Think about it. Getting the toothpaste, opening the top, getting the right (I stress, the correct!) brush, turning on the water, putting the stuff on the brush, putting water on the brush, which teeth to brush, how long to brush, what to do with your tongue, spitting it out… not to mention the sensory issues that can create obstacles.

So when do I know my fledgling with autism is ready to leave the nest?  Will Conor ever be ready to leave?  Sure, one day, I assure myself, he’ll be ready.  Only to join someone else’s nest. 

Because as hard as we try for the next ten years, my son will not be able to live independently.  Not with his place on the autism spectrum. I just hope he’ll live independently of us.

I’m sure by the time he’s 21, Conor will be more than ready to live independently of me.  Half the time he already looks at me like I annoy the hell out of him. (Yeah, right back at ya, buddy.)

It’s more than a little scary, you know, sending my disabled child out of the nest.  Who else will know all the little signs and meanings and interpretations and idiosyncrasies that my child has?

I guess I’d better start writing it all down now.

Leavin' on a jet plane

Once a year, I let myself look long and hard at my son.  I try to imagine what life would be like if he didn't have autism.  

I picture him in his Little League uniform, or lounging on the sofa reading a book.  

I imagine all the friends he would have over to the house every weekend, and me complaining about the noise and the mess.  (But not really minding, no, not really.) 

I picture the trips we would take and the people we would meet.  I wonder if girls would be calling the house, and then giggling when I answer.  Maybe we'd fight about the length of his hair, or his inappropriate language or when he can get his first tattoo. 

He'd call his little brother a booger butt and Aidan would call him a jerk and I'd send both of them to their rooms. My husband and I would let him babysit Aidan, and then fret all dinner long about whether the house had burned down.

It's very painful, which is why I only allow myself to do it once a year. Otherwise, I just can't stand it. I accept my son and his autism.  There's really no choice, I guess, since it's not like he's gotten just a sprinkling of it.

It's my way of recognizing our loss, I think.  Oh, it's not the loss of some grand dream, like hoping he'd be President of the United States one day.  (Although I do have the doctored birth certificate to cover up the fact he was born in Canada of foreign parents.  Don't tell The Donald.)

I don't care if he doesn't get 1600 on the SAT or isn't the best athlete. Who cares if he's a doctor or a teacher or a cashier at Target? (Think of the employee discounts!) I never dreamed he would be a corporate raider or a famous actor or a politician.

I do care that he doesn't know how to make, or be, a friend.  I do care that he won't ever be able to live independently. He won't get married. We have a pill case for all the medications. I care that I have to write stories with pictures to communicate an upcoming trip or schedule change. He needs help bathing.  He’s twelve, remember. Twelve.

It bothers me that he doesn't know how to tie his shoes, that I still sometimes have to help him when he goes to the bathroom.  It hurts that I worry when I go out in public with him by myself; will he have a tantrum or lash out at someone else? Will I be able to handle him?  (I think I can.)

There's a sweet little essay someone wrote a long while back.  Having a child with autism is like expecting to go to Italy and winding up in Holland instead, she wrote.  And oh, she soooo wanted to go to Italy, but you know, Holland isn't so bad.  They have flowers, and sunshine.  (And probably a lot better services for individuals with autism, but I digress.)

And I expect that this was true for that woman.  (C'mon, it had to be a woman. Seriously.)

Then, a few years after that, I read someone else's blog about how having a child with autism is like expecting to go to Italy and winding up in Rwanda during the genocide and the war.  It was a fight, it was senseless, it was hard, painful, and it was horrible despite the beauty of the natural surroundings.

And this is the crux of autism.  It is all those things.  Each of us packs our own bags (and the baggage that goes with it, along with our toothbrush), and boards our own flight to an unknown destination. 

(It's horrible, this metaphor, a cliché, but stay with me.) 

Some of us land in Holland, some of us land in Rwanda, some of us touch down in Canada, and others in Serbia.

And it's not just all about your attitude or your perspective.  You can be as positive as you want and just have the worst situation.  Sometimes it's about the autism, and what course it takes, and how it truly, really, honestly impacts your life.

You don't get to go to Holland because you're a glass half full kind of gal.  Your family doesn't travel to Serbia because you're a pessimist at heart. 

Sometimes autism takes you on a hell of a detour and you can wind up in flowers and sunshine or you can land in the middle of a war zone.  Or you can freeze your ass off in Canada.  But you don't necessarily get to choose.

Sometimes, autism chooses for you.

Nice to meetcha

Conor April 2011, 12 years old

It occurs to me that you might be interested in meeting the young man I’m always complaining writing about.  After all, it’s always nice to have a picture in your mind of a character in someone’s novel slash memoir. 

When I read George Orwell’s 1984 in high school, I thought the main character was really overweight because he had trouble touching his toes.  I couldn’t have been farther from the truth.  I think he just didn’t do enough yoga.

(Great, now I’m going to have to go re-read the novel because I can’t remember if he really couldn’t touch his toes or if I just didn’t pay attention. Mrs. Maurer would be soooo disappointed.)

Of course, Conor is currently overweight, but it’s because of his medication. See The Battle of the Bulge.

 Until Risperidone (an anti-psychotic), Conor was a skinny little thing but with a distended belly, not unlike some other children with autism.

If you met Conor in person, and you caught his fancy, he would point at you with his index finger and singsong, “What’s your name right there?”

Today, Conor is a 12 year old pre-teen (I am NOT old enough to have a twelve year old) with big blue eyes, a round freckly face, hair with just a hint of red, ears like Will Smith, an Autism Spectrum Disorder, Tourette Syndrome, and a burgeoning mood disorder.  Lions and tigers and bears, oh my.

Conor loves technology, as most individuals with autism do.  He’s a whiz at the Wii, a master at the iPhone, purveyor of iTunes (music + computers = love²), and wizard on the computer.  He’s not programming yet, but he certainly doesn’t need any help navigating his way around the World Wide Web.

He loves music; he has since he was little. Fortunately for us, he has good taste, generally, and only rarely hooks into the tween scene.  Party in the U.S.A., baby, I know every word.  

John Mayer, Maroon 5, and Michael Jackson have been perennial favorites, but Black Dub, Willie Nelson, Sheryl Crow and Coldplay have all made strong showings, as have others.  He doesn’t discriminate against country music, but jazz and classical music have never held much draw for him.  He occasionally listens to the blues. But don’t we all sing the blues at one point in our life?

He’s no savant, though, don’t buy into that Rain Man.  He can’t play a note, but loves to listen to music at full volume, preferably injected directly into his eardrum. Seriously, he will put the iTouch at full volume, hold the speaker up to his ear, and blast away.  Try it sometime, you won’t be able to stand the pain.

He played his music so loud in his home school, his teacher got him a t-shirt for his birthday that said “If it’s too loud, you’re too old.” It was his favorite shirt for three years straight.

He enjoys anything that goes fast.  Roller coasters are a favorite, but so is ice skating and riding in my Dad’s boat, and I bet if  when we ever get him on skis, he would bomb down the slopes like Bode Miller.

Cooking and gardening are favorite activities of my guy.  I used to describe him as my Renaissance Man, especially when he’d make me espressos like a little barista.

Recently, Conor’s really gotten into dogs.  This is terribly fascinating (only for me, of course) because for years he was terrified, absolutely terrified, of dogs.  Barking would drive him mad, with tears and shaking and screaming. 

Today, if he met you walking your dog, he’d point at you and yell “What’s that dog’s name?”.  (Right before he’d point with his index finger and singsong, “What’s your name right there?”.)

Swimming remains a favorite activity.  He mainly swims under the water, with a huge scuba mask on.  I think he finds relief from the world in the quiet of the water.

Ultimately, though, Conor loves math.  He loves numbers.  He loves the shape of them, the sound of them, what you can do with them.  He has untold numbers of calculators.  He plays math computer games for fun. He completes math worksheets to calm his anxiety. 

Don’t get your hopes up, he’s not going to Las Vegas anytime soon.  He just has this fascination for numbers, we like to call it “Conorology”.

But, despite all the wonderful qualities my son has, Conor has always been a difficult child.  At least since he regressed. Maybe he would have given us a run for our money without even regressing into autism, but we’ll never know. But you can read all about travails in, well, in most of my posts, but here's one that will tell you how bad it's gotten... Oh pick me, pick me!

So there you have it.  The C-Man. The Con-Man.  The Conorator.  I think I’ll start calling him “Con-undrum” because he certainly is a puzzle to me.

Abby Normal

Dr. Frederick Frankenstein: Ah! Very good. Would you mind telling me whose brain I DID put in? Igor: Then you won't be angry? Dr. Frederick Frankenstein: I will NOT be angry. Igor: Abby someone.  Dr. Frederick Frankenstein: [pause, then] Abby someone.  Abby who?  Igor: Abby... Normal.

From the movie Young Frankenstein

Recently, there's been a trend of asking this question as it applies to individuals with autism… "What is "normal"" anyway?  Some people don’t want to say “normal”.  It’s the new dirty word. 

As if it's bad for us to acknowledge the differences in our children with autism.  As if having autism is like having one blue eye and one green eye, or eleven fingers, or a mole that looks like the Virgin Mary. You know, something that doesn’t affect every single aspect of your (and your family’s) life.  (Autism impacts every part of the person’s life, it’s why it’s called “pervasive”.  Check this out: Groundhog Day )

I’m sure you can tell already that today I'm a little bitter about this.  My third and final therapist has quit, and now we have no therapists until the new one starts in three weeks.  The one who’s supposed to replace the first one who quit.  We haven’t even replaced the second therapist and now I’ve got to find a third.

Well, I'm here to tell you.  "Normal" does not need three behavioral therapists who then quit.

We all know what normal means.  Like U.S. Supreme Court Justice Potter Stewart said about pornography, I know it when I see it.  But in case you’re really confused, here’s the definition from a medical dictionary.  I even made like a good English major and footnoted it, APA style. (If it’s wrong, blame the Internet.)

My favorite is #3c but the most ironic is #2 given the whole vaccine/autism brouhaha.

1 nor·mal definition

Pronunciation:  /ˈnȯr-məl/

Function: adj

1 a :  according with, constituting, or not deviating from a norm, rule, or principle

b :  conforming to a type, standard, or regular pattern

2 :  occurring naturally and not because of disease, inoculation, or any experimental treatment < normal  immunity>

3 a :  of, relating to, or characterized by average intelligence or development

b :  free from mental disorder : SANE

c :  characterized by balanced well-integrated functioning of the organism as a whole

4 a of a solution :  having a concentration of one gram equivalent of solute per liter

b :  containing neither basic hydrogen nor acid hydrogen < normal  phosphate of silver>

c :  not associated < normal  molecules>

d :  having a straight-chain structure < normal  pentane>

nor·mal·ly Pronunciation:  /ˈnȯr-mə-lē/

Function: adv

2 normal definition

Function: n

:  a subject who is normal

normal. (n.d.). Merriam-Webster's Medical Dictionary. Retrieved May 27, 2011, from Dictionary.com website: http://dictionary.reference.com/browse/normal

Oh, pick me, pick me!

Today I mailed off my son’s application, and I am breathless with the hope that he’ll be accepted.  It’s like I just mailed off his application to Harvard and I’ve got my fingers crossed that he’s done enough extracurricular activities to actually catch someone’s eye.

Please pick me, please pick me, please pick me. Please please please please.

I filled out the form completely, and in my best penmanship.  (Not that the nuns at Catholic school ever thought it was ever any good. I got C’s every time.  It’s not my fault I have poor fine motor skills you know.) 

I looked up the expert’s contact information and jotted them down.  I included four videos showing him in various activities that are sure to catch the admissions director’s eye.  I even, get this, wrote an essay (totally not required, but you know I go the extra mile to beat out the competition.  Plus I’m a writer so it took me, like, 15 minutes.). I wrote the essay so that they could see that Conor was the perfect candidate. I hope I answered all the questions correctly, you never know what they’re looking for.

I’m breathless with anticipation.

Unfortunately for us, the application was to Kennedy Krieger Institute’s NeuroBehavioral Unit and, if they watch the video I sent with it, Conor’s participated in plenty of the required extracurricular activity.  Some days, it seems tantrumming is the major activity he does.

The NeuroBehavioral Unit or NBU (we love acronyms, don’t we?) is “dedicated to the assessment and treatment of severe problem behavior displayed by individuals with autism and intellectual disabilities.”  You can be admitted to inpatient or apply for outpatient.  We’re hoping for outpatient services.  Although Conor going somewhere else under strict supervision for eight weeks…. no, no, good moms wouldn’t think that way.  Bad mommy.

And so, I sent it the 5.28 miles down the road via Priority Mail.  Hey, I’m serious about this! (And it was only $0.05 more than regular parcel post anyway.)  I almost thought about getting that signature-required certificate thingy from the post office but who’s kidding whom here.  I’m going to stalk that Intake Specialist II Mr. Tony Ake until he processes that stellar application and at least gets me that interview.

At which point, I will impress them with my commitment to my son’s treatment and the way in which Conor has overachieved in every area they look for when considering admissions. Hell, at the rate he’s going, he could even be valedictorian. 

I’m so proud.

Is this the face of a crazy-ass stupidhead?

Yes, that's me. Wrinkles and all.

One of the toughest issues about being an autism mom that I have faced over the past ten years has been how to get along with other autism parents.

Look, at 41 years old, I know that I’m a bit of an acquired taste.  Either you “get” me or you don’t.  I’m blunt.  I’m opinionated.  I say too much, most of it without thinking it through first.  Let’s just say that I’m not being offered a diplomatic position anytime soon.

But with the skyrocketing rates of autism, you might think that we’d stick together.  That we’d get along.  At the least, you would think that we’d be fighting for the same goal. 

Well, I guess we have the same goal… helping our children progress.  Hoping our children progress, really.

The fighting occurs over how to make that happen. And boy, some parents can really bare-knuckle it.

Yesterday I was excoriated on an online forum by a (crazy) mom (who is probably on the spectrum herself) because I dared to suggest that a new mom (whose kid has yet to be diagnosed but probably has autism) might want to put her child on probiotics when he is on antibiotics.  The new mom had started him on antibiotics for an ear infection and saw his behavior worsen.  She wanted to know if anyone else had ever seen this.

I also suggested she try to find a DAN! doctor. (A DAN! doctor treats children with autism from a biomedical perspective.) Not because I think a DAN! doctor will recover (cure) her child, but because they see lots of the same issues day in and day out and might have a different perspective than your standard pediatrician.  We saw a DAN! doctor for years, and she was very helpful in cleaning up my son’s gastrointestinal, sleep and immune issues. 

And no, obviously, she did not cure my son.  And no, she was not anti-vaccine.  And no, she did not suggest that a magic crystal hung around my son’s neck would help. 

And yes, she asked at each visit what behavioral therapies we were doing, what his schooling was like, and what social skills we were working on.

Well, you would have thought I had just jumped into bed, naked, with Jenny McCarthy and started French kissing her the way this woman flipped out at me.

She started online screaming at me (YOU KNOW IN ALL CAPS AND NO PARAGRAPH BREAKS, I HATE THAT) about how there was no treatment plans and her son and Temple Grandin didn’t have treatment plans and they were just fine and her son went to the prom and had early intervention and full inclusion and now is learning how to drive and I don’t know what I’m talking about and people need to be aware of the charlatans out there…

I swear, she didn’t taken an online “breath” for one second.

You know, with all due respect to this woman’s son and Temple Grandin, my best guess is that my son’s autism is very different from theirs.  I dare say, they don’t even have the same thing.

Mainstream scientific consensus is starting to build around the understanding that “autism” is a broad term, that there are subsets of different types of autism, and that they are probably caused by different things (who knows what but here are only some theories I've heard: Is autism contagious?). But, because of their symptomatology, they wind up with this diagnosis: autism. (Symptomatology, cool word, eh? I had to look that one up.)

So my theory is that this is why parents are at each other’s throats.  (I know you’ve been dying to hear this.)

Our kids don’t necessarily have the same disorder, even though it’s called the same thing. 

Some treatments work great for some kids, some treatments work better for others.  Nothing works for every single child on the spectrum. 

And our kids’ needs are intense.  So we become intense.  (Key part of the word: tense.)

There are zealots on all sides, screaming about what worked for their child and you’re a crazy-ass stupidhead for doing it your way. 

Next thing you know, you’re looking out the window for Child Protective Services because you gave your child a Methylcobalamin injection.  (That’s B12.  I know, totally radical those B vitamins.)

Look, I’ll do what I think is best for my kid.  You do what you think is best for your kid.  We’ll swap stories over a hot cup of Hawaiian Kona and we’ll go home to our spouses and our kids (with and without autism), and struggle along the best we can, knowing that autism is a great big puzzle that has more than one way of being completed.

So, and I quote Rodney King here,  “"People, I just want to say, you know, can we all get along?"

Just eat the damn thing, already

This morning, my son had 14.2grams of pretzels for breakfast.  I know this because he only ate an Utz snack bag of shaped pretzel snacks. Lightning McQueen shaped snacks, to be specific.

Food and Conor have had a tempestuous relationship.  As a baby, he was a pretty good eater, gobbling up vegetables, fruits, and various other items that come in baby food jars.  (Hey, at least I bought the organic stuff.) 

I could never sell him on the pureed spaghetti and cheese, but really, who can blame him?

Then came the allergies to milk and eggs. (Oh, the distance the projectile vomit reached… it was like he was practicing for an Olympic barfing event. Gold medal contender. Just like that awesome scene in The Exorcist. Check it out, this was totally Conor.)

No worries, switched to soy milk and bought milk-free cookies.  It didn’t really alter his food choices that much. He's never liked eggs to begin with.

Then came the regression.  And with it began Conor’s very complicated relationship with food.

Basically, Conor eats two food groups: crunchy/salty and mushy/buttery.  Preferably of the carb variety. Not exactly "food pyramid" worthy.

Cross my heart, one time he ate sweet potato for dinner every night for a month.  That’s 30 days.  He turned orange.  It was like some sort of weird, bitchin’ tan.  (Hey, when you’re one of the whitest people on the planet, you take what you can get.)

Thankfully, I’ve kept him hooked on homemade spaghetti sauce, which has three vegetables—tomatoes (yes I know it’s technically a fruit, so kill me), zucchini, and carrots.  And garlic, garlic’s good for you, right?  And olives, that’s good, right, olive oil.  Very Mediterranean diet. Heart-healthy, I tell myself.

He doesn’t eat meat.  Something about it makes him gag.  So my kid was a vegan for a very, very long time.  No meat, no egg, no fish, no milk.  The dreadlocked moms that don’t wear deodorant at Whole Foods love me. The sausage eating red meat moms think Conor’s being a food snob.

Invariably, someone raises their eyebrows quite high and says “But what about protein, he’s not getting any protein.”  You know what lady? I tried to fight that fight.  Thousands of chickens needlessly died in my efforts to jam it down his throat.  But he’s not having it, nada, no way.  He doesn’t care if it’s fried, broiled, baked, grilled, marinated, pureed, or covered in chocolate, he is not eating it.

We used to really worry about it.  (Ok, I worried about it and my husband shrugged his shoulders.)  His teachers would tell me not to worry, most of what Conor ate was healthy enough and they knew kids who subsisted on French fries, corn chips and goldfish.

So here’s a quick sampling of food that Conor might eat on a good day.  He's outgrown the allergies.

On a bad day, he eats pretzels for breakfast. And lunch.  And dinner.

• Rice cereal
• Rice
• Rice Cakes
• Gluten free (or regular) pancakes or waffles
• Gluten free (or regular) muffins
• Baked potato
• Mashed potato
• Sweet potato
• French fries
• Chips, preferably Utz Bar B Q
• Cheerios, dry
• Pretzels
• Tortilla chips & salsa.  Hey, salsa’s a vegetable, right?  Score.
• Spaghetti sauce
• Pasta, preferably angel hair
• Cookies
• Ice Cream
• Sprinkles on the ice cream.  Hey, it counts.
• Peanut Butter, on a spoon straight from the jar
• Everything bagels
• Applesauce, but only because we put his medicine in it and he has no choice
• Cupcakes
• Butter, straight up

But you know what the really weird thing is?  Conor loves to cook.  He wants to be a chef when he grows up.  He will help me make a delectable Roast Pork Loin with Garlic and Fennel Seed with Roasted Fingerling Potatoes.

Just don’t even think he’s going to eat any.

Sex & Drugs & Rock & Roll

Dear Universe:


When I got pregnant and had my first child, I thought I had to worry about sex, drugs and rock 'n roll.  


I didn't know I should be worried about autism, Tourettes, and a mood disorder.


Psych.


Love, Alisa

Don’t kick the Shark.

Last night, I think my son broke his toe kicking my husband in the shin during a temper tantrum. Maybe? 

(Why he was having the tantrum is a whole separate post.  But let’s just say it surrounds the issue of sexuality. See If you want my body and you think I'm sexy.)

I never know what to do during these situations.  He knows how he hurt his toe. 

Me: ”How’d you hurt your toe, Conor?”

Conor: “You kicked the Shark.”  (Shark being his dad. And we’re still working on the pronoun use.)

He tells me his toe hurts, and limps around saying “ow”.  He asks for purple medicine.  (Children’s Motrin, grape flavor.  Recently we switched to Advil since he’s twelve and weighs close to 100 lbs. But he still asks for the kid’s stuff.)

Do I give it to him? Or is the pain a natural consequence, something that might make him think twice next time he wants to kick someone?  Do I talk to him about it, or is that giving him attention for bad behavior?  Do we punish him for the tantrum, or do we just breath a sigh of relief that it’s over?

I’m sure my behavioral consultant would have the answers, but I just feel so stupid for having to even ask the questions.

I feel guilty, too, for not taking him to the doctor.  I don’t want him to feel pain.

But there’s nothing to be done for a broken toe.  Tape a couple toes together and you’re off.  I’d take him to the emergency room if I thought he needed it.  That’s what we did when he put his arm through the windowpane in a tantrum years ago.

And so we literally hobble along, with the help of some Advil and years of experience dealing with self-inflected wounds.  Broken hearts, broken toes… the walking wounded you might say.

Movin' on up...

What would you do for your child with autism?

Would you pick up and move to a better school district, even if you can’t sell your home?  Relocate to a state with better services?  Would you move for a trusted doctor?  A family member in need?

My husband and I have discussed moving from Baltimore for all of these things.  I’m a small town girl, reared by farm-raised parents (you know, like salmon)…a gal who moved to New York City for a job and never looked back. (A locale, by the way, recently rated as one of the best in which to raise a child with autism, ironically.)

I love living in an urban environment.  Neighbors, sidewalks, sushi a block away and authentic Indian food on the speed dial.  People from diverse backgrounds and numerous universities and colleges right next door. So we settled in Baltimore before we had kids… jobs, family, friends.

I know the local Chinese restaurant’s owner by her first name (Li Ho, she’s awesome), and she knows our regular order.  But the one thing a city (any city) rarely has is a great school district. Especially for kids with special needs. Hell, we send our typical kid to a private school, are you kidding me? One with autism… there’s not a choice here.

So we’ve hemmed.  We’ve hawed.  We’ve see’d and we’d saw’d.  Do we move?  Do we fight?   Do we settle?  Buy all the services we need privately?  But good lord, the bills, the bills.

In the end, it’s pre-determined.  We will stay here because, quite frankly, it’s too hard for me right now to leave.  And my family is here in Maryland. Mom and Dad, three sisters, four nieces, one nephew, one cat, one English Lab, and one pit-bull mix.

And I’m a city girl, maybe not born and bred, but by choice. I like it here, with all of Baltimore’s troubles and warts. Maybe, even because of it. I run into John Waters in the local grocery store.  John Waters!  Is there anything more fabulous than running into John Waters in the store?  He’s fabulous, fabulous.  (Did I say he’s fabulous?)

Good lord, I have three of my best friends within three City blocks of me, what more could you ask?

Plus, the City just agreed to place my son in an appropriate Level 5 school, so moving would jeopardize all that.

As for my husband, maybe it’s because he moved “down South” so many years ago.  (He’s from northern Connecticut, born of Boston Irish Catholics.) Maybe it’s because he comes from a family of (mostly) boys and I come from a family of girls. But, it’s easy for my husband to contemplate moving and it’s so hard for me to do it.

Theoretically, I am ready to move.  New Jersey has the best services, so I’ve heard.  Our DAN! doctor is in Richmond, VA… how are the schools there? My sister lived in Richmond for a while; looks like a nice place.

My husband could get a job in two seconds in California.  It’s the Home of his People, the Tech Folk. Those Tech Folk have lots of kids with autism, a built-in community of peeps. How about Boston?  Close to the hubby’s family and still a fun City.  Lots of Tech Folk there.

A while back, we did a little search to find the absolute best school for children with autism.  We made a lot of phone calls, did tons of internet research and emailed many administrators and consultants.

Turns out, no such thing really exists.  Oh, there’s the “truly awful” coupled with the “mediocre” followed by the “pretty good”.  But there’s no Harvard of autism schools, at least none that I’ve found.  Have you? If so, let me know.

So here we stay.  In John Water’s land, picking crabs that have been steamed in Natty Boh,  eating steamed shrimp and drinking Rolling Rocks at the Cross Street Market, watching the Orioles give up another season, cheering the horses running the Preakness, and hoping that the Ravens will go all the way again this year.  And coping with a child with autism.  And Tourettes.  And a mood disorder.

Hand me another Rolling Rock, I think I’ve earned it.

The Measure of a Mom

Once or twice people have remarked that I’m an amazing mom and, while I politely thank them, I cringe inside.  Not only is it untrue, it sets unrealistic expectations. 

What does this mean people expect of me?  I’m not sure.  What would you do if you had a child with autism?  Leave?  Give up?  Doubtful. You do what you have to. I can’t measure up to “amazing”.  Mediocre, maybe.  Run of the mill.

I think I’m more like a “Do what you can and move on” kind of mom.

Then I wonder if they really mean, “Thank god it’s you, not me.”   

You want to know the real truth?

I don't want to be an autism mom.  I’d rather be a soccer mom, a hockey mom, a helicopter mom.  Hell, a Toddlers and Tiaras mom. Anything but this.

I am bitter, resentful.  I am angry and frustrated.  I didn’t ask for this, I didn’t volunteer.  Kudos to those who foster and adopt children with special needs.  They’re the ones who signed up for this, not me.

I am exhausted, sleep deprived beyond the pale.  I am crabby, irritable, irascible and acerbic.  I yell, am impatient. 

I slam doors, go sit in my car and turn up the music to drown out the narrative in my head. (I haven’t done this since I’ve started blogging, though.  Turns out writing it all down tends to silence the running narrative I’ve got going on in my brain. Lucky you.)

I’m often depressed, anxious, self-medicating on top of the doctor-prescribed medication. It’s ok; I always ask if alcohol is allowed.  If not, I ask for something else.

I’m a wimp, and often wake with a sense of dread.  I loathe the weekends, no school.  A babysitter’s out of the question. Summer vacation is enough to send me into a tizzy.

I cry, gnash my teeth.  I give in, I give up.  I’m disorganized and overwhelmed.

One time, my babysitter’s friend told me I always looked like I was just trying to get through the day.  Well, yeah, lady, that’s the goal, isn’t it?  Put the day to bed already. Or at least the kids.

Sure, I celebrate the little joys. Usually with a glass of red wine.  (See, multitasking. Self-medicating AND celebratory.) Except every time my son progresses, it’s bittersweet because I know that tomorrow he could slide back. One step forward, two steps back his doctor used to say. Forward. Back. Back. Forward. Back. Back.  Like a bad foxtrot.

A truly amazing mom would embrace the challenges inherent in raising a child with a disability, rejoice mightily in his triumphs (no matter how small), let the tough times roll off her back, and wake each day ready to face what comes next, with a spring in her step and a smile on her face.

I mean, wouldn’t she?

Oh no, not quirky.

I dislike the word “quirky”.  It lets people off the hook.

Quirky is too easy.

Quirky is liking broccoli with peanut butter.  It’s enjoying punk polka dancing, liking pina coladas and getting caught in the rain.

Quirky is fun, unexpected, kind of cute, a little peculiar. It’s wearing a raspberry beret in the middle of the summer.

Some of my son’s behavior is quirky, I’ll admit. He’s twelve, but he still skips around when he’s happy.  He’s never been much of a hand flapper; more like a hand wringer.

But many of his behaviors are very disabling.  And most are downright weird and somewhat antisocial.

In all honesty, I could handle quirky.  I’d rather read a book than play a sport (any sport).  I took clarinet and piano. AP English classes. I was in the marching band, dude, I know all about quirky. 

I was a geek, a dork, a nerdlette.  I wore glasses and braces, simultaneously, with a healthy smattering of Clearasil. Some might say I'm still quite a nerd. I mean, I blog.

I know that sometimes people like to say that individuals with autism are quirky because it makes their behavior seem lovable, it makes you feel warm inside, all fuzzy.  Look at me, I love my little dork.  And I do often smile at some of the things Conor does. Like literally marching around the kitchen to his favorite Maroon 5 song.

He used to do this little dance, where his feet (only his feet) swirled around like beaters on a mixer.  We called them “Happy Feet”.

I guess maybe if my son had Aspergers or a much more mild form of autism, I would feel that way about quirky too. Or maybe if he didn’t have such a high level of behaviors.  Even most dorks can be friends with other dorks.  That’s what the A/V club is all about, after all.  Or the band.  (I was a flag.  One of the big ones.)

And I know it’s hard for kids with Aspergers or high functioning autism (HFA).  The bullying, the teasing, the awkwardness, and sometimes the anxiety and depression. Knowing they are different, not quite sure why but looking for acceptance… just like the rest of us.  Hopefully they come out of school with a friend or two or three, and find their home in academia or at Microsoft.

I just worry about Conor, that’s all, not having any friends.  Not knowing how to make friends.  Not understanding how to be a friend. I know he wants to.  He just doesn’t know how. And it's so hard to teach.

That’s why it’s good that he has a brother.  At least someone will have his back. Now I just have to teach Conor how to appreciate his brother.

The best laid schemes o' mice an' men

I used to be a fairly spontaneous person. I'm no Angelina Jolie, mind you. (In more ways than one.) 

But I didn't mind picking up on a whim and going to do something fun, something exciting.  I didn't need every minute of every day predictable and boring.

Roommate’s boyfriend playing in a club in Philly?  Count me in, baby.  Friend’s Ocean City condo free for a beautiful May weekend? I’m there, with bells on… and my bikini.

I figured being a parent would be the same, just with more… baggage.  You know, like a Pack ‘n Play, diaper and a stroller. My husband and I were going to travel, visit exotic locations, see the Seven Wonders of the World. My children would be Citizen of the World, a la Brangelina.

Bye bye dream.  Hello, reality.

For most people, autism takes the spontaneity out of life.  Our family is no different. Before we go on vacation, I put the helicopter in helicopter parent.  

I schedule down to the minute sometimes.  You have to.  It's the foundation for a successful outing with Conor. If he knows what to expect, things go a little more smoothly.

But, as the story goes, the best laid plans of mice and men...  You can’t control everything.  Not even the weather.  Or bus drivers.  No matter how hard you try.

Let’s use this morning as an example.  Conor started at a new school last August.  But since we were privately paying, the public school’s bus service wasn’t an option. Fourteen months and twelve thousand dollars in legal fees later, the school system finally agreed with us about our son’s appropriate placement and he’s entitled to the bus.

Awesome.  Great.  Conor LOVES riding a bus.  Rode a bus every day to camp last summer; earned the award for Best Camper On The Bus.  (Who wouldn’t have loved a full hour to listen to your favorite music on your headphones?)

So there we were this morning, the four of us, waiting for the bus.  Me, my husband, Conor, and Linus (our dog). (Check Linus out: he's pretty cool, for a rascally pup. )

I’d written the social story.  We’ve interfaced with the school.  My husband has given directions to the bus company.  The bus driver, having missed the house once already last week, has been informed of the directions.

The iTouch is fully charged.  Headphones have been located.  I personally set the volume limit control on said iTouch.  (Conor can really rock out on the iTouch, let it be known.) Lunch: packed.  Backpack with communication notebook: packed. Red windbreaker: donned.

7:45am, full of excitement. Any minute now!

8:00am, still waiting, happily. Running around the yard, getting his sneakers soaked in the dew, listening to my iPhone.

8:15am, husband makes first phone call.  How the hell do we know what the bus number is?  We never got a letter from the City.

8:20am, husband makes second phone call.  Bus driver is lost.  Conor is still calm.  He’s excited, after all.  Woke up at 5:45 this morning to make sure he didn’t miss the bus! (Yawn.)

8:30am, husband makes another phone call; starts cursing like a sailor.  Conor’s still calm, but starts asking… “When is Conor going to ride the bus?” He knows something's going on.

8:35am, Husband makes another phone call.  We discover the bus driver has taken the other kids to the school because he’s been driving around forever.

Conor asks, “When will Conor’s bus come?”  Uh oh, his eye contact is getting really good; not a good sign.

8:40am, husband makes another phone call.  We’re told the driver (and his now empty bus) is currently stuck in traffic on the way to our house.  Husband starts pacing back and forth in front of the house. 

Linus has decided to go into his crate; he knows the gig is up.

Conor stops asking, starts demanding, “Want Conor’s bus to NOT BE STUCK IN TRAFFIC!”.

Uh, yeah, that makes two of us, buddy.

8:45am.  Jim and I see the writing on the wall.  Conor sees it too, and doesn’t like the message. No bus ride today.

Insert 45 minute tantrum here.  Needless to say, no bus ride.

What I’ve learned over the last decade is that we can try as hard as we can to control all the variables, but there is always something that we can not control. 

The weather.  Other people.  Traffic.  Long lines.  Inventory in stores.  Attitudes. 

Invariably, something goes wrong. 

And so we work on patience in our behavioral program.  And waiting.  And appropriate behavior.  Handling frustrations.  Accessing our calm behaviors.

And not biting people on top of the head. Yeah, we work on that too.