My own Big Chill

On Friday, I leave for my 20^th college reunion.  You can say it...I’m old. 

I’ve been obsessing over this for the last month. I’ve got the requisite hair cut (but opted not to touch up my roots; big mistake), have the appointment for the mani/pedi, booked the hotel room, confirmed that my roommates will be there, and only need to buy a pair of shoes before I am ready to go. I have to find the pair that will make my outfit.

Reunions are all about catching up and I’m looking forward to hearing what everyone’s been doing with their lives.  But I’m starting to get anxious about talking to people about my life.

For the last ten years, I have been living and breathing autism.  Oh, I’ve had a job for a little while, and taken a few nice trips, but all in all, my husband and I and Aidan have been coping with Conor’s autism non-stop.

But, I am determined. I am SO not going to be that boring woman who can only talk about one depressing topic ad nauseam.  And crying, I am NOT going to cry. (Three years of therapy, and I still cry when I talk about my son’s regression. Wimp.)

To reinforce my determination, I have written a little mantra to repeat to myself several times a day.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

I will not talk about autism at my 20^th college reunion.

Break out the Doublemint Twins

In Mexico, I hear, there is a gum version of Viagra.  Perhaps it is for men who want longer lasting... flavor? (Turns out, even guys who can't swallow very well like to get a little action once in a while.)

I'd love for Pfizer to take all this innovation, all this research and development, and put it to use on autism.

I mean, I know erections must be simple, relatively speaking.  But we're talking brains here, right?  One's just a little smaller than the other.

Nice to meetcha

Right now, I'm not managing the relationships in my life very well.  And if I, a typical 41 year old housewife, am having trouble managing the relationships in my life, I wonder how Conor's ever going to be able to manage a relationship.

It's a conundrum.

I'll take three grasshopper sandwiches, to go please.

Our family vacations are my own personal version of Survivor.  You know, the popular TV show where the contestants have to eat live bugs, build their own shelter, overcome various challenges, and conspire with their mortal enemies to slowly pick off the competition one by one.

That’s nothing compared to have a “vacation” with Conor.  Hell, give me a cricket and I’ll eat it right now.  Right now.  

Stay balanced on a small perch or support my weight on a precarious roost for a long period of time in the hot sun?  Bring it, baby.

But ten days of Spring Break with my son?  I feel like faking a heart attack and going into the hospital just to get out of a few days of it.

I’ve often pondered why it’s just so hard to have him at home for an extended period of time.  I think I’ve boiled it down to three simple facts.

All this together time is killing me

At school, Conor has a 1:1 aide, Mr. Jakuta.  (We call him Jakuta the Barracuda. Don't worry, he's nice.  It just rhymes.)  He’s there to make sure Conor gets to where he needs to be, that he does his work, behaves appropriately and, most importantly, doesn’t hurt himself or anyone else.   At least, not seriously.

The need for constant 1:1 supervision doesn’t stop at school.  At home, vacation means no down time for me or my husband.

Like many families, school IS our respite program.  When Conor is at home, someone needs to be supervising him pretty much around the clock.  Oh, he sleeps through the night most nights, thanks to a bevy of medications, but then we have to do pesky things like clean the kitchen or pay bills.  Sometimes we even feed the dog.

I often equate my son with autism as being in a perpetual toddler state, behaviorally anyway.  You never know when he’s going to dump a cup of water on the floor, choke on a quarter that he’s put in his mouth, or throw a tantrum because something isn’t working. 

And, if you’re a parent, you know that toddlers need constant supervision. It’s exhausting. I don’t know how that Duggar woman does it.  (You know, the one with 19 kids.)

Just watch TV for a while, dammit

My son has very limited interests.  He’s not great at “hanging out”.  My friends who have typical kids are happy for a break from the school routine, glad the 101^st baseball game of the season is cancelled, and, gasp, actually miss their children when they’re in school.

My husband and I have to engage Conor in an activity pretty much the better part of each day.  He doesn’t really like to watch TV.  In fact, he hardly watches any TV at all.  He’ll play the Wii, surf our iPhones and his iTouch, and spend time on the computer.  But those activities don’t fill a rainy day.

He doesn’t like to play board games, but will play them if forced. (I mean, coerced.) Ok, that’s 15 minutes to play Star Wars Trouble and boom, he’s done.  Two games of War and he’s running away from the deck like it's a stinging insect.

We used to take Conor out in the community a lot.  We went to the mall, to museums, to department stores, to the playground, and the National Aquarium.  But since his behaviors have gotten so severe and unpredictable, community outings have become somewhat nerve wracking and restricted.

Ironically, I often find myself begging Conor please please can we just watch Shrek for an hour on this rainy day?  Because if I have to spend another hour trying to entertain him, I’m going to pull my hair out.

What will Conor do on Friday?

Individuals with autism need structure, support, predictability and consistency. It’s the autism mantra.   Unfortunately, it’s easy to say, not so easy to do.

We spent four days in Williamsburg, VA, with Conor on his Spring Break.  One day for travel, two days filled with riding roller coasters and puke-n-twirl rides, and one day for travel back to Baltimore. 

Conor’s first question on Wednesday morning?  “What will Conor do on Friday?” (We're still working on pronouns.)

I spend an inordinate amount of time planning, down to the minute sometimes, what we’re going to be doing on our vacations.  But pesky things like weather, electricity outages, illness, and even other people sometimes just get in the way.  It rarely goes as planned.  And that can result in heightened anxiety, incessant demands for the planned activity, and even aggressive behavior.

Seriously, Conor can handle the biggest roller coaster in the amusement park six times in a row, but a rainy day at the beach?  Forget it.

And I have to say, I would love to have some vacation days where we don’t have anything planned.  We can do nothing, or everything, or something… but just not have a plan.  Well, spontaneity went out the window with Conor’s regression, I guess.

So grab that grasshopper.  I’ve got the flour and the oil in the deep fryer ready to go.  Can’t wait to gobble them up.  I’ve even uncorked an appropriate Chardonnay to pair with them, along with a hearty cheese and some arugula.

But, please, let Conor have school tomorrow.

Oh brother, how art thou?

My husband and I took Conor to Busch Gardens in Williamsburg, VA, for his Spring Break.  He and his brother go to different schools, and thus, have different schedules. 

So we sent Aidan (our typical child) to my Mom and Dad’s for a few days and nights. They made sure he slept, bathed, got to school, and got the payment in for the class picture and the dollar for the Used Book swap.

Tonight, my Dad brought Aidan home.  I missed Aidan so much.  He’s my red headed, freckled face, blue eyed wonder full of what makes almost-nine-year-old boys so wonderful.  He’s the love of my life. 

(Until he turns thirteen, that is, at which point I’m sure I’ll give him away to the first gypsy who offers to take him.) Nine years old is my favorite age. They still need you, but they don’t need you.

We feed Conor dinner pretty early and by himself.  It’s just easier.  My husband inhales his food in about 3 minutes.  (He always has.) And then he supervises Conor while Aidan and I finish our meal together.

As Aidan and I were eating dinner together, he started crying because his brother was at the computer, just screaming.  Not screaming in an angry kind of way.  More like screaming in an “I-like-the-sound-of my voice” kind of way.  But still, Aidan said it made his stomach hurt and his chest feel all squiggly down to his stomach. I have to agree; it’s quite jarring.

Who can blame him?  After four days with two retired, doting grandparents and an 11 year old golden retriever/lab mix who sleeps for a living, it’s got to be a jolt to come back to a loud, chaotic, unpredictable environment with a brother with autism.

“You don’t know what it’s like to have a brother with autism,” he cried to me over his grilled chicken, noodles, and yogurt tube. 

“I know what it’s like to be a parent of child with autism,” I replied.

 “Yes,” he said.  “But it’s not the same as having a brother with autism.”

I guess it’s not.  I’m an adult after all.  I took on the responsibility of having a child, no guarantees, when I was almost thirty years old. It’s not the same as being an 8 (almost 9) year old with a brother with autism.

I mean, Aidan still cries if he can’t go over his new (I swear he’s my best friend even though I just met him) friends’ house.  I can’t imagine what it must be like for him to cope with a brother who struggles daily with communicating, has really weird behavior, and targets him with aggression for no reason at all.

I hope that it will get easier for him as he gets older.  Maybe it will get harder as he becomes more self-conscious.  I don’t know.  All I know is, he’s right.  It’s tough to have a brother with autism.

Dull women have clean houses, or so I'm told.

Look at this kitchen. It's so clean. And neat. It calms me just to stare at it. This couple has 4 children and a house in England that is a bajillion square feet on 23 acres of land. They own a successful I.T. company. This is code for: they have more money than god but not Bill Gates.

They converted the ballroom into a Lego room. What kid with autism wouldn't love a room full of Legos? (Well, my kid isn't into Legos, but this toy is Legend amongst many in the autism community.)

Five architects later, they have the house of their dream. (I know, five architects, it's so tough to find great help these days.)

Yes, I know they picked up the kids toys for the article profiling their English estate in The New York Times Style Magazine Design Spring April 3, 2011 issue. I'm sure they have dishes with 3 day old cheese crusted on them in the sink, just like me.

This is my son's room.

You can see just by this one picture how cluttered his bedroom is.  You might think he wouldn't notice if one tiny thing was removed, but oh believe me, he notices.

(I'm the Orioles fan, in case you're wondering.  My husband loves the Red Sox.)

I always wonder...  is Conor's mind as cluttered as his bedroom?

No more pencils, no more books, no more teacher’s dirty looks

It took me five grueling years to get my Masters in Business Administration.  Five long years of night school, of charging thousands of dollars each semester on my credit card to pay tuition to Johns Hopkins University. 

Five long years of working, studying, working, studying. Finance practically killed me, don’t get me started on Statistics.  

(There’s a reason Statistics sounds like Sadistic.  But I digress.)

 During those same five years, I moved from Manhattan to just outside Washington D.C., took a new job, had two direct reports quit while simultaneously trying to manage an acquisition, planned a wedding and got married, moved again, and had a baby.  Finally, I graduated in May 2000!

Such a waste of time. 

Seriously, I have a specialty in Strategic Planning and what I’ve discovered is… you can’t strategic plan your way through autism.

Here are the degrees that I should have gotten to help me as a parent of a child with autism.

Medical degree

I’m tired of reading the Journal of Autism and Developmental Disabilities and understanding the words “is”, “the”, “an”, and “autism”.  Seriously, it would take me 15 minutes to get through one paragraph.  Please, lord, give me a SWOT analysis and I’ll buzz right through that thing.  “High levels of homocysteine and low serum paraoxonase 1 arylesterase activity in children with autism”… not so much.

Oh believe me, I’ve tried. I tried to get my brother-in-law to explain medical studies to me, in plain language.  He’s a neurologist, and his advice was to simply stop reading the studies.  Yeah, right, Pete, like that’s gonna happen.  Could you please just break it down for me?

I’m tired of arguing with doctors about what medical tests to order to figure out why his gut hurts, and why he always has a funny rash on his arms, and what is making him so obsessive, and I know that something’s bothering him, I just know it.  A mom knows these things.

And I have my theories, you know, because I’m always reading those pesky Journals and medical studies.

Special Education degree

I have a sneaking suspicion that schools must pass along some secret in class to their Special Education teachers because who can muddle through a 36 page Individualized Education Plan and really address all those goals and objectives?!

Conor will pick his nose only twice out of ten tries with 80% accuracy.  Check!

Yes, my son’s IEP is 36 pages long.  Twenty of those pages are his Functional Behavioral Analysis and Behavior Intervention Plan, I swear.   Special Ed folks actually call this the FBA/BIP or--say it out loud with me--the Fa-Bib-Ip.  I am not joking. Fa-Bib-Ip.

When Conor is in crisis and he bites his hand, do not respond.  If he starts gouging at his eyes, please respond quite rapidly.  Check!

In all seriousness, teaching Conor has always been a mystery to me.  Oh, we used the Picture Exchange Communication System (PECS), and social stories and video modeling, discrete trial training, pivotal response, blah de blah de blah. 

But I never feel like I really do a good job explaining things to him.  It’s that damn communication disorder.

Law Degree

We’ve recently had to enlist the aid of an attorney and an advocate to wrangle with our local school district about my son’s placement.  I felt I should be prepared.

I mean, it’s not enough for me to pay someone $350 an hour to make sure they know this stuff.  I have to read books and watch how-to DVDs about it myself too.  (Hey, I watched Erin Brockovich, you know. My boobs might be smaller but I can still be helpful.)

But I think going to law school might help me understand regulations such as—

“(f) Rule of construction. Notwithstanding any other individual right of action that a parent or student may maintain under this part, nothing in this part shall be construed to create a right of action on behalf of an individual student or class of students for the failure of a particular SEA or LEA employee to be highly qualified, or to prevent a parent from filing a complaint under Sections 300.151 through 300.153 about staff qualifications with the SEA as provided for under this part.”

Huh?

When I read this, the voice in my head sounds like the adults in the Peanuts video.  Wah wah wah wah wah wah wah.

I think law school must teach you how to drink the right amount of coffee so that your brain doesn’t painfully twist around in your head reading this kind of language.

In the end, I just don’t have the time and patience to earn another degree.  I know parents who do just that, however.  They go back and get a degree so that they can help their child and their family progress. 

Personally, I just talk to whoever will listen about my son, his challenges, our struggles and our hopes.  I visit doctors, psychologists, teachers, experts, and parents to see what everyone is doing and trying.  I go to conferences and seminars on topics that pertain to what we’re coping with. 

At business school, we called this “networking”.   To me, it’s just being a mom.

Don't be such a baby.

I recently discovered a blog about parenting a child with autism, thanks to an old friend of mine, and I really enjoy it.  It's upbeat, positive, a loving portrait of living with two children on the more severe end of the spectrum.  

She doesn't candy coat it, but she's focusing on the positive aspects of the challenges in her life.  It's not the nail biting, soul searching, angst-ridden musings of a neurotic that mine is turning about to be.

One day I was reading her blog, and smiled at something her kids did.  I scrolled down to read the comments. Comments can be so insightful, supportive or even controversial.

One comment said something like, "I love your blog, it's so positive.  You're not whining like so many other people."

Whining.  Whining?  Whining.

This comment blew. my. mind. 

Would the commenter have told an Iraq war veteran with posttraumatic stress disorder to stop whining?  Suck it up, man, and grow some balls already?

Do you tell the parent of a child who has died to just get over it?  To stop obsessing about it, and to move on already, we're sick of your crying?

Of course not.  Look, autism changes your life, irrevocably.  Inevitably.  It can change it positively or negatively. Most times, both.  It's never what you expect. And each person’s perception and experience of it is different and unique. 

  

Communicating the hardships of raising a child with autism isn't whining, dear commenter.  It's important that you recognize the challenges of raising a child with autism so that when someone asks you for help, you'll know why. 

So when you're asked to support legislation and tax-funded services to help these families, you'll know why. 

So when an individual with autism comes to you for a job interview, you’ll be understanding and patient.

It’s important to be aware, so when a parent of a child with autism has to leave work early because the school called (again) about yet another crisis, you’ll be sympathetic and not resentful.

So when you meet someone with autism who is behaving oddly or even aggressively, you'll know why.

And hopefully once you know why, you’ll care enough to try to do something to help.

Don't bite the hand that feeds you.

Conor had a tough week last week.  Here's the nurse report.  (Sorry for the fuzziness; my printer/scanner/copier/fax sucks.) Full mouth dental imprint.  Yup, that's my guy, a hand biter.

OMG, what would the neighbors think?

When I was in high school, my mom caught my boyfriend and me steaming up the windows of his Volkswagen Scirocco behind the house.  It was only slightly mortifying. 

But what I remember most about the incident (other than how fun it was to steam up the windows) was her reaction.

She didn’t sit me down and talk to me about sex or birth control.  She didn’t question my morals or lecture me about the dangers of premarital lust.  Quite simply, all she said was--


 “What will the neighbors think?” 

As a parent of a child who often acts unpredictably, impulsively or, let’s be honest here, weirdly and sometimes aggressively, I often wonder what our neighbors think.  Or truthfully, what strangers think. (Our neighbors have actually been quite nice. Except that one horrible woman that no one on the block likes anyway.)

Oh, I’ve gotten past the embarrassment of him skipping around with his funny little dance and high-pitched squeals of happiness.  I’ve moved beyond the shame of him asking quite loudly to become a girl, and I’ve tolerated the remarks from the TSA employees about the green nail polish he had on his nails.  (I mean, really, who cares if he wears nail polish sometimes?  I like to think of him as going through a Goth phase.  How very punk, I tell myself.  How very Billie Joe Armstrong-ish.)

My face still gets red, though, when he picks his nose (and eats it, gross).  I get a hot flash when he sticks his hands down the back of his pants.  (OMG, please don’t have found anything back there!) I am BEYOND mortified when he starts tantrumming in public.  He’s twelve, for Pete’s sake.

I mean, can you imagine what those other parents must be thinking?  I know what I’d be thinking if I was watching this go down.  “Can’t that mom control her child?  What the hell is wrong with her? What’s wrong with him?”

Well, back in 1987 when my mom caught me making out with Troy in his car (he had a CAR!), I didn’t much care what the neighbors thought.  Today, I’d be fooling myself if I said that my son’s behavior often doesn’t embarrass me or make me cringe.   I just wish it was because I caught him out back steaming up the windows with his girlfriend.

Shhhh, here she comes!

I hate being That Mom.  You know the one.  The one always asking for favors. 

For me, usually, the favor is, can you watch Aidan for a couple of hours, get him off the bus and give him some dinner? Because Jim and I have to take Conor to the psychiatrist at 5pm.  Or… Jim’s got a meeting at 7pm, can you help me put the kids to bed?


This is my favorite… Our therapist called out sick today, can Aidan come over for awhile ‘cause Conor’s in a really bad mood?

I want to be the Mom Who Helps Out, not the Mom Who Needs Help All The Time.

We have some great friends and family.  They’re always willing to help out if they can.  But it bothers me—a lot—that we can almost never reciprocate. 

C’mon moms and dads, that’s how it’s supposed to work, right?  You watch my kid for an hour, I watch your rugrat for an hour.  I drag your kid to squash lessons and you drag mine to baseball practice. Your kid tears up my yard with his cleats and my kid tracks mud all over your carpet.

Conor hates little kids, so babysitting my 2 year old niece while he’s home is tough. Forget her 5 month old brother.  God forbid a kid actually cries near him, the trauma.

Conor’s jealous of his little brother, so having Aidan’s friends come hang out for any length of time can be challenging.  I mean, who wants to invite a friend over but, by the way, we have to lock ourselves in my mom’s office to play the Wii so my crazy brother doesn’t attack us?

Don’t get me wrong.  Everyone is so totally nice to me, it’s embarrassing.  They make offers to help, and I believe they mean it.  Most of them, anyway. Even parents who barely know us have helped us out.

I just… I don’t know, I hate asking for help, I guess.  I hate needing the help.  It just makes me feel so… helpless.  So dependent.

Groundhog Day

My son has autism today.  He has autism every day.

There’s no break from it, for him or for us.  There’s no minute or hour or day of “normal”.  That’s why it’s called a Pervasive Developmental Disorder.  It’s pervasive, all right.

It affects everything, all the time.

It’s there when he wakes up in the morning.  It’s there when he goes to sleep.  When he eats.  When he poops, when he pees. When he’s at school, when he’s on vacation, when he’s sick, when he’s well.  It’s there when he swims, when he runs, when he’s camping, even grocery shopping. At the orthodontist, the dentist, on the bus, on the train, in the car.  At the movies, in the mall, when he's ice skating or playing at the park. On Christmas, Easter, the 4^th of July, Armistice Day, his birthday, it’s there.

Every minute of every hour of every day, it’s there.

No remission.  No cure, at least not for my kid (god knows we’ve tried).  No time out. He won’t grow out of it.  No “let’s pretend everything’s ok today.” You can’t ignore it, it’s painfully omnipresent.

It’s just there, in your face.  Constantly. All the time. All. The. Time.

Welcome to the Hotel California, Such a Lovely Place

Ah, respite.  For most people, this is just taking a well-deserved break from the kiddos. Parenting is tough. But since my kid has a disability, it's called "respite". 

From wordnetweb.princeton.edu, respite is defined as a “reprieve: a (temporary) relief from harm or discomfort.”

Relief from harm or discomfort.  Yes, I would say that would be apt. Like OxyContin for your soul.

This year, I found respite 1,484 miles away from Baltimore, MD at College Station, Texas.  I took my typical 8 year old with me to visit my best friend and her family for four glorious days.  Amy and I have known each other since Mr. Yost’s general chemistry class our sophomore year in high school. Hubby stayed back at home with Conor.

It's so restful to spend time with my typical kid.  He's a breeze.  It was awesome.  I didn't have to worry about him having a tantrum. He’s too young for teenage angst. I didn't have to write him a story about everything that we were going to do. I could go to the bathroom at the airport without bringing him into the stall with me. Can you imagine the luxury? 

He actually, get this, played with their daughter--outside--and I could stay inside and have a cup of coffee with my friend!  Isn't that amazing?!?

The problem I have with respite is the temporary part.  You know, my kid still has autism when I come back. I'm right back in the thick of it when I return.  Back into the harm and discomfort of trying to raise my child with autism.  And I love him with all my heart, but he is one tough kid to raise.

I can’t believe I’m going to admit this, but for a long time, I was afraid to go away for respite.  Because I didn’t know if I would come back.

Once, during a particularly tough time, my sister said that I was a strong person (despite my crying to her everyday) because, well, I was still here.  I hadn’t left.  I looked at her like she was a crazy person.  (I should explain that she’s a social worker so she knows that plenty of people actually do leave when things get tough.)

I mean, of course, I had considered it, in the dark recesses of my mind. On the darkest days, at the worst of times. But to actually DO it?  It boggled my mind.  Was that really ever an option? No, of course not.

It’s like that old Eagles song that’s now become such a cliché.  You can check out anytime you like, but you can never leave.  I’m in it for the long haul, goddamn it, but that doesn’t mean I have to like it.

A vodka martini, please. And make it dirty.

I asked a close friend once how she handled having a child with autism.  Her son was much older than mine, and she’s done amazing things with him. But still, it was tough.

Vodka, she said.  Lots and lots of vodka.

The battle of the bulge

My son is fat.  Not pinch-your-cheeks, aren’t you cute! chubby.  Not even he’ll-grow-out-of-it extra weight.

It’s more like target-of-Michelle-Obama’s obesity campaign fat.  He looks nine months pregnant.

It’s not his fault.  I mean, increase in appetite and weight gain are typical side effects of both the anti-psychotic and the mood stabilizer that we’ve given him. (You should read the other possible side effects, but that’s for another post.) He’s gained twenty pounds since he got out of the hospital on December 17^th, and even though we’ve reduced the dose of the medication and are trying to get him on the treadmill everyday, the scale just doesn’t budge.

But still….  I hate myself for this, but I can’t stand that my son is fat. 

Every time I look at his chubby (albeit still beautiful) face, I flinch.  Inwardly, of course, he doesn’t see it, but still.  Every time I go to give him a hug, I have to reach my arms around that big belly and I feel a twinge of sadness. The love handles, you have no idea.


I know, I’m a horrible person, horrible, horrible. I'm sorry.  

He’s at risk for diabetes.  He huffs and puffs when he climbs the stairs.  I had to buy a Husky bathing suit. He has trouble putting his socks on by himself! I’m sure other parents think I’m force-feeding him pizza three times a day. It’s simply awful.

But, of course, I can’t stand that he has tantrums, is aggressive and self injurious if he’s not on the medication.  So you can see that I’m in a bit of a quandary here.

I obsess over each piece of food he puts in his mouth.  I count the number of potatoes, bagels, noodles, and chips. All he eats are carbs, carbs and more carbs. I try to make him run up the stairs.  Not in a Mommy Dearest sort of a way, but in a “last one up is a rotten egg” sort of way.  (He doesn’t care if he’s a rotten egg.  He walks.)  My husband takes him on marathon walks with the dog and I keep putting him on the treadmill for longer and longer sessions.

You don’t understand, this kid was so skinny; I used to beg him to eat. Now I can’t get him to stop.

I simply can’t wait until summer, when he can swim in the pool all day (will he even want to?  Be ABLE to?), hike the trails, play tennis, run around, and get all the physical exercise he can stand. And maybe get off at least one of these medications.

Now if I could only get him to eat cabbage soup…I’ve heard great things about the cabbage soup diet.

It's time to put down your pencils.

I often have to write stories to communicate with my son.  I hate this.  It would be more accurate, I guess, to say that I resent this.  But then I've been fighting against this autism thing forever.

You'd think I'd enjoy it more, after all, I have enjoyed writing for a long time.  (Well, not "writing" like Mark Twain writing, but I enjoy crafting a turn of phrase or two.)

Here's an example of something I've had to put together to communicate with Conor.

Notice I did NOT say it was ok to attack the teacher with a pencil. No, Conor, that did not make this list of appropriate things to do when upset. So stop doing it.

Just put the broom down, ma'am.

Lately, I’ve been feeling a little overwhelmed.  The problem is, I’m not quite sure why, since I’m unemployed.  I mean, it all just feels like too much to handle right now. And the only boss I have to report to is Conor. I don’t know how other people do it.

(Listen, I feel the need to say, I really do realize that I’m lucky to be able to stay home. It’s a luxury many parents don’t have.  But that’s for a future post.)

Oh sure, I have the passle of annoying chores that everyone else has to do, the same boring to-do list that every mom deals with. (If I have to sweep the kitchen floor one more time I’m going to scream.)


I go to the grocery store so often I feel French.

Someone smashed my car’s passenger door window and I have to deal with the insurance company and the repair company to get that fixed.  Today, please, if possible.

We’ve got a ceiling coming down in the back hallway and we honestly have no idea why.  (Well, I have my theory and my husband has his theory and since they don’t match, the collective “we” has no idea why. I’m right, though.) This means that we now have 4 ceilings with various levels of damage (mostly water) and the plaster is bubbling up on one wall (again, with the water).  We fixed the leaks but not the damage.

The six foot wooden fence around our yard is broken in four different areas thanks to our latest wind storm.  (Linus still can’t get out of the yard, I’m thanking the universe now for sparing us that!)

I’m shedding a lot of hair. I don’t have the time for the blood work (did make time for the doctor visit, though) but I am not going to go to my college reunion bald, thank you very much. So I’ve got to fit that in.

The dog has an ear infection, which includes, get this, MRSA.  Yes, the antibiotic resistant bug that means he’ll need multiple ear drops and multiple vet visits for multiple months… yeah, that’s gonna be cheap.

We need to upgrade the Internet because my connection keeps dropping, which is annoying to me (what with all the recent blogging) and tantrum-provoking for Conor. But I spent an hour talking to someone about the thingy (a modem I think it’s called) and got nowhere.

I could go on with the chore list forever (and my husband often says I do).  I think what overwhelms me is the extra layer of chores that having a child with autism often adds on.

Things like—

He only eats 5 foods so if we run out of one, I have to go to the grocery store.  Immediately.

Those Nazis at Quest Laboratories won’t release blood results to me (the patient’s mother). And for some unknown reason, the psychiatrist can’t seem to, oh, I don’t know, get around to contacting the lab for the results of the blood work he ordered… three weeks ago.

Insurance keeps paying or not paying various doctors bills and lab invoices.  So we’re constantly getting bills, paying bills, getting refunds for overpaying bills, and then more invoices.  Trying to keep the insurance straight is like trying to train a goldfish.  Impossible.  (But, again, thankful we have health insurance. I shouldn’t complain.)

Every time I pick him up from school, I cringe and try to hide from Conor’s case manager ‘cause if he’s coming out to talk with me?  It’s not for my sparkling wit, let me tell you.  Hmm, I wonder who Conor bit today?  Oh, it’s pinching?  That’s better. 

Keeping track of Conor’s medications and supplements is like living with an 85 year old man with high blood pressure, heart disease, diabetes, and erectile dysfunction.  We used to have a spreadsheet to track them all but now I just have one of those days-of-the-week pill cases.

You know, Conor is twelve years old now.  But in many ways, it’s like still having a toddler.  I can’t leave him unsupervised for very long when he’s home.  You never know what he might be getting in to.  He could have wet his pants. Or climbed on top of the dining room table.  He might be happily playing Pop A Shot on the third floor, or working up to a wicked tantrum because he can’t get on the Internet.

He might be bouncing a ball in the front hall and knock a picture off of the wall.  And then step on the glass in his bare feet because he doesn’t know that stepping on broken glass will hurt.

Spring is coming.  He can open the back door and let himself out in the yard.  He might decide to go swimming in our pool and he’s big enough and smart enough to work the lock on the door and the gate.  Of course, he can swim like a fish, but still…

So when it’s my turn to be Conor’s one-on-one at home (my husband and I take turns), there’s not much else I can accomplish. 

Oh, I totally left parenting my other child of my to-do list.  Maybe I’ll get to that tomorrow.

I just farted.

I just farted.  (Oh, c’mon, like you never.)

And I’m praying that my son’s therapist hasn’t heard it.  She’s 23 years old, gorgeous, a former university cheerleader, an Occupational Therapy graduate student, and I’m sure she never has gas.  (Yes, she’s that pretty.  And a damn good therapist.)

For the past 10 years, we’ve had therapists coming into our home.  First it was just the speech therapist.  Then, we started an Applied Behavioral Analysis program in our home.  (ABA is an intensive behavioral therapy that has been shown effective with children on the spectrum.)  At one point, we had eight people we paid to do some sort of therapy with Conor.

In this house, “alone time” didn’t exist.

Now, don’t get me wrong.  I am eternally grateful from the bottom of my gassy little heart that we can afford to have people come into our home to help Conor make progress and give us a break.  Without them, he wouldn’t have nearly the number of skills that he has. And I would have lost my sanity a long time ago.

And just this year, Conor went to a school-based program, instead of being in our home all day long.  I’m so grateful. I’ve finally gotten to listen to the ticking of the clocks for a change, instead of hearing Conor giving his teacher or therapist a difficult time all day long. Finally, some privacy.

But, since he’s had such severe behavioral challenges this past year, we’ve re-started a behavioral therapy program at home, too.  And I’ve had to re-learn what it’s like having to share a space with other people who aren’t family, or friends, or even acquaintances. 

You know, like prison.

Well, I can always blame it on the dog.  Thanks Linus!

Shuttlecock

At his 12^th birthday party, Conor received a wonderful gift—a set to play badminton (minus the net).  This gift was thoughtful in every way. Lightweight and ok for indoors. (It's still cold!) He has to be social to do it.  Works fine and gross motor skills.  Promotes verbal exchange (way to go, almost, your turn!). Turn taking.  Hand/eye coordination. Eye contact. Awesome. He loves it.  Awesome.

Shuttlecock.  (giggle)

“What’s that called?” asked Conor.

Me:  “Racquet.”

“That is…,” queried Conor, pointing to the shuttlecock.

Me: (giggle) "shuttlecock"

I know, it’s juvenile and immature.  I just can’t help it.  Every time I say the word “shuttlecock”… the appropriate name for the thing-a-ma-jiggy that you bat back and forth in badminton… I giggle.

Conor:  “This is a shutcock.”

Me: (giggle) “It’s called a …shuttlecock, Conor.  Shuttlecock.”

Conor:  “This is a shutc…”, eyes focused right on mine.  (Great eye contact!)  

Me:  (giggle giggle) “Shuttlecock.”

I just know the next time he plays with his grandmother, he’s going to yell out, “This is the SHUTTLECOCK!”

Hee hee.

Poop. On the floor.

Today, I found poop on the floor of our master bathroom.

I thought it was some leaves.  Hey, I’m middle-aged now and my eyes aren’t what they used to be.  And it was early.  So I touched it.

It wasn’t a leaf.

It happens.  Shit, that is.  And no, it wasn’t the dog. Linus has never had an accident in the house.

My kid, on the other hand, does. In his defense, he was probably wiping.  It wasn’t a big poop on the floor, and he stands up and turns around to wipe.

Wiping your bum is remarkably complicated, apparently.  Because we’ve been working on this forever.

This is the part where I shrug my shoulders and figure, whatever, he’ll get the hang of it.  Eventually.  I hope.

Then we can work on washing our hands religiously.  Cause I found a schmear on the wall, too.

This parenting gig is beyond me.

All the furor over Amy Chua’s “Battle Hymn of the Tiger Mother” has really hit home for me. What’s the best way to raise a child? Is it a culture of high expectations, strict rules, structured time and towing the line? Or is it spontaneity, creativity, follow-the-child discovery and unschooling with a dash of anything goes, whoopee?

Quickly following Conor’s regression into autism, it became abundantly clear to me that I had absolutely no (I repeat, no) idea how to raise this child. I always pictured myself as a disciplined but accessible parent, dreaming of sitting on the side of his bed one day, exchanging confidences like girlfriends. (Yes, I know he is a boy. But hey, it’s my dream.)

He would talk endlessly to me about his hopes, his dreams, his youthful crushes, and his fears. I couldn’t wait to find out what was going on in that brain of his. I just knew he’d be fascinating.

Talking. That’s the rub. Autism is a communication disorder. At first, for Conor, that meant losing his ability to talk. He was speaking in three and four word sentences, and then seven days later, he wasn’t. He had over a 100 words… until he didn’t, seven days later. He gazed at me with those wonderfully huge blue eyes, until, seven days later, he wasn’t. I remember the very first word he said after he regressed. Dump. As in, dump the sand out of the truck. Took six months of speech therapy, damn it, but he said it. Just that one word.  Dump.

It’s been 10 years of speech therapy, occupational therapy and Applied Behavioral Analysis, not to mention the biomedical interventions, and my son is verbal. Conversational, even. But communicating with him about what are the clearly complex inner workings of his emotions and his brain is still just so difficult. Pushing a boulder up a hill difficult.

And so my husband and I still struggle along, trying to figure out how to simply manage his behavior, most days. Some days we’re successful, we understand why he’s upset or happy, what’s tickling his funny bone or what’s clearly a sharp but invisible stick poking him somewhere. Other days, he remains a mystery, an enigma.

And pretty much everyday, I wonder… have we made the right choices? Am I doing the right things? Will I ever get to sit on the side of the bed and exchange confidences? When will I stop feeling like I'm just "winging it" and be confident that what I'm doing will, in the long run, pay off?

Going head-to-head with a pre-teen with autism is a losing proposition.

After talking to some parents of pre-teens, it’s not surprising to hear that you and your pre-teen might have some, well, differences of opinion.  And I’m sure that it can lead to raised voices, hurt feelings and the slamming of doors for the best of parents.  Hell, my brother-in-law once even took the door to his daughter’s bedroom off the hinges, literally, because she was slamming it so hard and so often.

So it’s no surprise that Conor and I are butting heads, more than we ever did before.  The issue?  His obsession is running afoul of my obsession.  Hey, it’s a spectrum and I’ll admit to having a touch (just a little :-) of OCD myself.  Our mutual obsession?  Music and the iPhone.  Namely, MY music and MY iPhone. 

I’m not sure how it happened.  Usually I’m pretty good at nipping these things in the bud.  But one thing led to another, and now, my son has bogarted my iPhone. (From urbandictionary.com, the act of hogging something to the point of annoyance.  Yeah, that’s it all right.)

There has to be a specific number of artists.  With a specific number of songs.  And a specific number of videos.  All in alphabetical order, of course.  Add a song?  He makes sure another one (of the appropriate alphabetical type) is removed.  If I make a playlist and it doesn’t match his criteria?  Deletes it, the little bugger. 

Fighting with him doesn’t do either of us any good.  Let’s face it… in the end, his obsessions are much, much, MUCH greater than mine and I’m supposed to be the adult here.  He’s the one with the disability. Confronting him or changing things would lead to tantrum upon tantrum and I’m just too exhausted of the whole autism thing to deal with that right now.  So I grit my teeth and suck it up.

Except now he’s threatening to erase my This American Life podcasts. NO, NOT IRA GLASS!  Does Conor know I harbor a secret crush on Ira Glass?  At least on his voice?!  I might have to put my foot down for Ira.

Stop saying that you love me

Stop saying that you love me

When it’s obvious you don’t

No matter what you do, you

can’t shove it down my throat

If it’s true that you love me

Like you often say you do

You wouldn’t do those stupid things

That make me want to hate you

When did things get so complicated

The years keep slipping by

Wearing at our relationship

All I do is cry and cry and cry

It’s all your fault you silly cow

That’s what you often say

No matter how hard I try, I

can’t make it go away

Stop saying that you love me

When it’s obvious you don’t

I’m getting the hell out of here

Where is my goddamn coat?

If it’s true that you love me

Like you often say you do

You’d say I was so beautiful

Smart witty talented too

Instead you rail loudly at me

About things I can not change

What do you expect me to do

Is our constant fucking exchange

We used to be tight, so close,

We breathed the same still air

Now we live so far apart

Even though we’re both still here

You get the hyper hairy dog

And I get the tabby cat

We can split the kids in half, you know

Let’s leave it right at that.

Stop saying that you love me

When it’s obvious you don’t

I’ll call you when I get settled, ‘cause

I finally found my coat.

The introverted, pessimistic and/or awkwardly social need not apply.

During times in my life, I have been at least one of the above.  All right, if you must know, there have been times when I’ve been ALL of the above.  And it seems to me that sometimes there is no lonelier existence in America than being someone who is not perennially happy, positive, optimistic, social, outgoing and just so darn cute.

What IS it about our society that struggles to see the value in being pensive, that penalizes those who prefer quiet evenings and one on one conversation to a bawdy, riotous party? 

Don’t get me wrong, I’ve seen my fair share of frat parties and man, are they fun.  People actually do get drunk, strip naked and dance on the bar.  I know--I’ve seen it with my own eyes!  (OMG, so hilarious, seriously.)  But really? Should it be a requirement for inclusion in our society that a person be the life of the party 24 hours a day, to always see the glass half full, to natter on about the silver lining in a chamber pot we’ve just been handed? 

I actually had a performance review at a former job that lowered my overall score (and don’t you just love that your co-workers get to rate you, what sadomasochist came up with THAT) because I wasn’t “social” enough.  Huh?  They knew my relationship status, pre-Facebook, mind you.  They knew where I grew up, how many sisters I had, what I liked for lunch, and the town I lived in. They met my fiancée and saw my vacation photos. We went to lunch together, and had meetings together, and swapped recipes.  But since I didn’t go to happy hours, football games, and weekend parties with these people, it actually affected the perception of my work performance. 

So no, I’m not one of those absolutely wonderful moms-of-a-disabled-kid women who always look at the bright side, can’t stop talking about how great it is that my kid is “differently-abled”, and that, “gosh darn it I wouldn’t change a thing-autism is a gift” folks. I know how hard it is to just be a quiet, somewhat shy, somewhat awkward typical person in our society. It has to be torturous for people with autism. And no, I'm not happy that my son will be tortured with that.

This is so not what I thought my life would be like.

When I was young (so long ago), I pictured my future life this way: a house (not too big, not too small), a husband (handsome, funny), a dog (furry, excitable), a passle of kids (maybe three, gasp, maybe five!), fun vacations and campfires with marshmallows.

Or I pictured myself as a career woman, maybe married but deliberately child-free, traveling to Paris on a whim and well-deserved vacations at the beach. And I would dress very chic, all in black.

Or I was single, working for a few bucks, living in a rental apartment but I had good friends and fun and drinks and hung out with my elderly-but-still-with-it parents and slept in on the weekend.

Oh, and I still had the dog, no matter the scenario.

I never pictured myself shut in my pre-teen son’s room, watching him bang his head on the floor or biting at the flesh on the back of his hand until it is black and blue and bleeding. I never thought I'd still be helping my son wipe his bum or that I would spend hours trying to help him understand that if he stopped picking his nose compulsively, it would finally stop bleeding.

But hey, at least I did finally get the dog.

Watch what you say, someone might be listening.

Today is a day for memories. Painful memories. Complicated memories. Thoughts of death, life, destruction, envy, hate, valor, and hope. The best of human emotion. The worst of human emotion. The understanding that we as humans are capable of so much…so much goodness and light, so much evil and dark. And, so much mediocrity.

My son has trouble with memories and emotions. Communicating them. Answering questions about them. If he can’t tell me what he did today, is that because he remembers, but can’t say? Or that he doesn’t remember at all? I turn this over in my mind, again and again. The expression on his face leaves me wondering. He looks as if he is trying to remember. He seems to be as perplexed as I am that these things are hard for him.

He’s slowly making progress with his memory. At once, he has a terrible memory and a wonderful memory. Terrible, in that he struggles to tell me what he did that day or who he saw, no matter how unusual (or usual) the event. Wonderful, in that he now talks about events that occurred when he was three or four, events and people that I never realized he was even cognizant of. It makes me stop and think about the things I’ve said when he was so disengaged. Things I would never have talked about in front of my typical child. Has he been listening all along?

I have come to love you

I have come to love you

as you are

not as I thought

you would be