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.