Use Your Words


The ways that Evan is learning to incorporate language into his life can be startling. All day, every day, Evan “scripts”—that is, he plays little scenes or plays or books or whatever over and over in his head.  He stares off into space, just past whoever or whatever is right in front of him; like there is a tv on my shoulder that he is watching instead of looking at my face.  Often, this involves him singing songs (in whole or in part) aloud, reciting either phrases or entire books, or quoting movies or shows he has seen.

Our ongoing effort to pull him into the world that is going on around him can seem utterly fruitless.  Getting him to use the most seemingly simple expressions or declarations have occupied years of our lives.  Just getting him to say basic, functional words, like “hungry” “bathroom” or “headache” has been a daily struggle that often seems, quite frankly, to be going nowhere.

The craziest thing is that he is starting to transform his scripting into the type of functional language we’ve been hoping for.  It started with his tantrums.  When he gets upset and throws himself on the floor, screaming and yelling, we do as we’ve been trained to do:  calmly remind him to use his words.  “What’s wrong, Evan?  Use your words.  Evan, stop yelling and stand up.  Are you mad?  Does something hurt?  Use your words.”  (And, in case you’re wondering, we often feel as idiotic as I’m sure we sound every time we recite this).

And now, slowly, he has started using his words.  No, not our words, his words.  Instead of telling us that he’s mad, he stops screaming momentarily to quote his favorite Christmas special, yelling:  “What’s the matter, Frosty?” at the top of his lungs.  He then answers himself:  “CRYING!”

Then, today,  came the next one.  At dinner, Evan bit into the taco I had just made for him; the meat was right off of the frying pan.  Evan took one bite.  Instead of shrieking and yelling over the molten hot meat-and-cheese combination,  he opened his mouth, fanned his hand in front of his tongue, and loudly, clearly, quoted the last line of Where The Wild Things Are, announcing  “AND IT WAS STILL HOT!”  while we all simply stared at him in amazement.

Yes, Evan is using his words,  And the books and movies he has been memorizing for the past several years are helping him put into words exactly what he needs to tell us. Like so many of his strides forward, it has come in fits and starts, with awkward progress gained in unexpected ways.  But I’ll take it.

Chain Reactions

Calhan, Colorado high school cafeteria.

Calhan, Colorado high school cafeteria. (Photo credit: Wikipedia)

Kids with autism are funny, for many reasons.  But one interesting thing I’ve noticed is how they exercise control.  They tend to have curious reactions that follow a seemingly unrelated event.  For example, when Evan gets a headcold, he stops using the toilet.  I don’t think it is related to ability—that is, I don’t think having a stuffy nose makes Evan forget how to go to the bathroom.  I think it is just a strange way to cope with things that he can’t control, or a weird way to control one thing when another thing is out of his control.  “I don’t feel well, and I can’t tell you why or how, so I’m just going to completely stop playing ball with you until you pay attention to this problem,”  Either that or, “I have no idea why I suddenly can’t breathe and my nose is running and my head hurts, and I don’t know what to do about it, so I’m just going to revert to a behavior that I engaged in two years ago and maybe that will make it all better.”

I don’t know if he’s really thinking any of these things.  As with everything else that goes on with Ev, I can only guess.

So, when a bunch of kids with autism are together and things go wrong for one kid, and that affects another kid, well…that’s when the fun really begins.  Take, for example, yesterday in the school cafeteria.

Evan brought his lunch and his chocolate milk over to the seat he sits in every single day.  Except, someone was sitting in that seat.  Okay.  The aide moved Evan to a different seat.  However, in the different seat, he was now sitting next to a kid that was talking constantly and wouldn’t shut up.  Naturally, Evan reacts to this by refusing to eat his own lunch.  Because…just…yeah.  That’s how the reactions go.  The aide, hoping to rectify the situation, tried to move Evan to yet another seat, one that was away from the talker.  Evan had other ideas:  he climbed up into the lap of the aide and refused to get down.

So, at this point, everyone is happy.  Right?  Ha ha ha.  No, another kid decided that he didn’t want Evan on the aide’s lap.  We’ll call that kid…I don’t know…Nemo (I don’t actually know the kid’s name, so I’m afraid that if I pick a typical human-child’s name, I’ll accidentally be breaking some privacy law.  So I shall give him the name of a fish).  So Nemo resorted to his patented go-to move when things aren’t going his way:  he vomits all over the table.  Nemo’s aide, ironically, is a person who vomits whenever she sees someone else vomit, so…she vomited all over the table (and now is the appropriate time to wonder why they paired that child with that particular aide).

Eventually, everyone got cleaned up and survived the experience.  What this has taught me, first and foremost, is that I never, ever, ever want to work as an aide in the elementary school.

All Aboard the Toilet Train


A few days ago, Evan suddenly found a new phrase to blurt out at odd times.  He’d look at me, smile, and yell, “Toilet train!” and then collapse into a fit of giggles.  While this wasn’t the first phrase he’s ever done this with, (“Mushroom on a stick!” and “Elephant!” are recent favorites that come to mind), this one did seem much funnier to him than anything in recent memory.  But, this type of thing happens every once in a while here at the House of Autizzy, so –other than a brief moment of wondering if he was expressing pride at his record four years in the toilet training process– I didn’t pay it much attention at all.

And then, on Sunday, we were on a little family expedition.  The other kids were campaigning to watch a movie in the car since we were anticipating a longer-than-usual car ride, and I obliged.  I turned on the DVD player while Randy drove, and the movie The Incredibles started playing.  The Incredibles has been Evan’s favorite movie for the past few months, so he was all smiles as the movie started.

Randy and I were alternately discussing the best route to take and absentmindedly chuckling at some of the movie dialogue (due to the car entertainment system , The Incredibles is one of seemingly thousands of movies that I have whole scenes of dialogue memorized for but have probably only actually seen once).

Suddenly, we were listening to a scene in which Mrs. Incredible and Violet, the daughter, were arguing.  Violet yelled, “The only normal one is Jack-Jack, and he’s not even toilet-trained!”

“TOILET TRAIN!” Evan squealed giddily, cracking us all up.  All five of us were suddenly laughing.  I looked back at Evan, and he was looking–yes, with eye contact and everything– at each of his siblings and grinning, as they looked back at him and laughed.  I was struck by this stunningly normal family moment, all of us laughing at the same joke.  All of us suddenly getting what Evan has been laughing at for days.  Evan suddenly connecting, sharing his joke with us.

In the past few days, Evan has made it clear that the hilarity of the phrase “toilet train” is in a simple misunderstanding of the meaning.  He lines up his train cars (of course) and then tells us, “Credibles say toilet train!” and cracks up all over again.  He’s picturing a train of toilets…which, in all my life, had never occurred to me when I heard that phrase.

Now, though, it’s all I’ll ever hear.

If only we could get to the bottom of Mushroom on a Stick…

Value of Mom


Every year—usually around Mother’s Day—some organization or other makes press for calculating the actual market value of motherhood.  You know, with values for all of the individual jobs it entails; taxi driver, laundress, nurse, etc.  And inevitably the total—usually about $300,000 if I remember correctly — is met with water-cooler type banter, often debating whether that estimate is too high or too low.

It’s all in good fun, but it does come to mind every so often for me when I start to doubt my own value.  Is it true that my value as a mother equates to the total value of all of the jobs I do?  The idea is interesting, but seems unrealistic.

As a woman who has no other paid occupation, this is something I grapple with.  I mean, honestly, I can’t even come up with a name for what I do; how can I even begin to put a value on it?  “Full time mother” sounds like a slight to working moms (Like, what are they, part-time mothers?  I think not.)  Non-working mom?  Ouch.  Homemaker?  It sounds like I sew curtains and bake cookies and wear an apron all day–  Not that there’s anything wrong with that, it’s just that I can’t sew and I never wear an apron (I have one, for when my own mother visits.  But I hardly see the point in wearing a $30 Williams Sonoma apron to protect a $9 Target tee-shirt.)  Housewife?  I didn’t marry a house.  So I just kinda stick with “I’m a Mom” and leave it at that; figuring that people will figure out that if I had some more compelling title, like talk show host or astronaut, that’s what I would have led with.

So that’s me.  I’m a Mom.  That’s what I’ve done for the past nine years.  And lately it is something I’ve been turning over and over in my mind, trying to come to some sort of terms with.  I’m seeing friends who have kept their careers meet great success, reaping the benefits of their years of service.  And I’m seeing other friends who have taken time away from their jobs start back at work, some slowly, some jumping right in.  And, as I try to determine when or if or why or how I will start working again, I realize that I have to figure out how I feel about how I’ve spent my time for the past nine years.  What is the value of what I do, and of what I’ve spent nine years doing?

Today was a particularly yucky kind of day for me, for no particular reason—the kids are healthy, they got along fairly well, no major meltdowns or breakdowns.  The car didn’t leave me stranded, I didn’t drop my bag of groceries in the parking lot of the Giant…it was, by and large, a pretty good day.  But as little annoyances built up and grew and got under my skin, I found that, by nightfall, I was pretty much a basket case.  First, I started with my “Fuck this, I’m getting a fucking job” pity party.  Which just becomes a bigger self-pity party when I realize that 1—I would then have a job and still be doing what I do now, and 2—If I stopped doing half the things I do now –and here is the depressing part—most likely, nobody would even notice.  Really.  I’ve gone on strike before.  Stop sweeping up the dog hair?  Nobody notices.  Stop weeding the front flower beds?  Nobody cares.  Stop feeding the fish?  They’d probably die, and then nobody would notice that they were dead, except me, who would try to take a stand by not emptying them from their fish bowl until they really stunk, and then I’d be mad that nobody even noticed the smell but me.

So, by this point (if you’re even still reading), you’re probably noticing that I’ve worked into an incredibly robust “woe is me” aria.  I’m really good at that.  I’ve had years of practice.  And usually, it pretty much ends there, and I see a shiny object and wander off and forget all about it until another day.

But today it kinda stuck with me long enough that I started really asking myself some tough questions. What exactly am I doing?  Why?  And, what is the value in what I do?

And it dawned on me that, in most jobs, no matter how lousy the day goes, we know that the XYZ Company values us at exactly the amount of our salary.  And if we get a raise?  They value us more.  So, the value of our work isn’t what we personally value ourselves at.  The value of our work is what we are worth in the eyes of our employers.

And then, something even bigger dawned on me:  I knew this all along.  Thus the good and bad days.  When the kids take me for granted, I feel valued at nothing.  When my husband complains about the brand of toothpaste I bought on sale, I feel valued at nothing.  Because I have no other “compensation and review” practice, my self-worth is reflected in whomever I feel is judging me at that moment.  When my mother in law not-so-subtly critiques me for how I discipline my children, or when a friend makes an offhand remark about ‘those stay-at-home mothers,’ I instantly identify that as a critical mark on a performance review.  Conversely, when one of Evan’s aides comments that the reason he is doing so well in his therapies and school work is largely because of the extra attention he receives because I don’t work, I feel like I just got a huge raise.

At this point in my writing, I’m starting to feel guilty because you are about to discover that there’s no big happy ending here.  My next sentence isn’t “and then Oprah heard my story and gave me 20 million dollars just for being me, and I got the new kitchen of my dreams and I realized once I was filthy rich that I am really happy doing what I do and I didn’t want to change a thing, except maybe the $9 tee shirt.” 

Not a chance.  But I think maybe I’ll work at not letting random outsiders put the value on what I do.  Good or bad, their opinions don’t really matter.  But I think, maybe, I already knew that, too.

On Statistics and Springsteen


In a house where a ‘crazy day’ is the standard, Thursday was one of those days when everything was just a bit more wacky than normal.  One of those days that gets completely rearranged because a kid wakes up sick…reschedule appointments, call the pediatrician, take the kid in for a strep test (positive), run to the grocery store, drug store, physical therapy for a knee injury, get kids off the bus, snacks for everyone, dispense Motrin, Allergy meds, and antibiotics as needed…but all along, I knew that if I could just make it to the evening, I’d end up with a major payoff:  tickets to Bruce Springsteen and the E Street Band.

And, like the day needed any more nuttiness thrown in, my smartphone lit up and buzzed all day with news reports of the latest CDC statistic:  1 in 88.  Deep breath, eye roll.  One in eighty eight children (one in fifty four boys) is now diagnosed with autism.

Another deep breath, another eye roll.  Autism awareness month is coming in April, so I have come to expect a full-court press of Autism in the news this time of year.  But sometimes it kind of sneaks up on me.  And sometimes, I’m just not sure what I can do about it.  One in eighty-eight.

As quickly as the new statistic tried to assault me, I deflected it.  Not today.  Not right now.  Don’t suck me in.  Not while I’m taking Elena’s temperature for the fourth time and trying to count backwards to figure out when she can have her next dose of Motrin.  Not while I’m reminding Ryan to finish his math homework.  Certainly not while I’m digging through the stacks of CDs looking for my copy of Greetings from Asbury Park (which I never found, by the way…but I did discover that we own three –THREE!—copies of Born to Run).

Eventually we made it out the door to the concert.  While munching on crab fries and sipping a beer before the concert began, Randy and I had a brief discussion of the new statistic.  We chuckled over Randy’s darkly comic suggestion that we reassure friends and family who had, with best of intentions, brought the stat to our attention by telling them, “Don’t worry!  We are your ‘one’!  As long as you don’t meet more than 88 kids, you’re safe!”  or “In our house, it’s one in THREE!”

Then we had another beer, and moved on.  Made our way to our seats for the show (arguably the worst seats in the house—second to last row behind the stage), and the lights dimmed as Bruce took the stage.

And, as promised, the world fell away.  We Take Care of our Own.  Waiting on a Sunny Day.  The Promised Land.  For those of you who have never experienced a Springsteen concert, the closest I can describe it is…it’s like church.  Not fear-and-guilt church.  Raucous, spiritual, feel-it-in-your-bones, connection with humanity sort of church.  Like stumbling into a revival, or the Gospel tent at Jazz Fest.

The Rising.  Rocky Ground.  The names alone read like sermon titles.  And, somewhere, somehow, beautifully and magically enough, I became wonderfully unaware of autism.  Unaware of statistics and predictions and behaviors.  Unaware of IEP meetings, psychologists, and therapists.  Unaware of anything but thousands of people dancing and singing in unison.  Kicking the ground and raising their fists.  Dancing, smiling, and cheering.

For three hours last night, I became unaware of everything in the outside world, and incredibly, powerfully aware of myself as part of a whole.  Of the power of music and soul and spirit.  Of harmony and humanity; of raising the dead and raising hell.

There is no one in eighty-eight.  There is one that is part of a larger whole.  Everyone in that arena is a one-in-something.  Everyone is facing some statistic.  And everyone laid down their burdens and their fear to be one with each other, in three hours of joy and music.  We were aware that we are all connected; that we are all part of one community.  We are one.

That is my statistic.  We are one.



I’m feeling guilty.  It is Autism Awareness month, and I’ve done nothing.  I haven’t changed my Facebook profile picture to a puzzle piece.  I haven’t changed my status update to preach awareness or acceptance—though I certainly appreciate those who have.

I’m not sure why I’ve been so uncharacteristically silent this time.  I guess I figure that anyone who is my friend, virtual or otherwise, is overwhelmingly aware of our status as a family affected by autism.

Evan was diagnosed with Autism on March 27, 2007.  The first ever World Autism Awareness day was six days later, kicking off the activities of Autism Awareness month.  Quite literally, as the world first became aware of autism, so did we.  It was a strange way to get acquainted with this crazy new aspect of our lives.  I will never forget those first few hours and days after the diagnosis—the strange combination of feeling simultaneously hurt to the core, yet strangely numb—staring at the television as talk show after talk show revealed this horrible, scary world that we had stumbled into.  The parents on Larry King or The View crying over their broken dreams for their children; the video footage of children struggling with the smallest of tasks.  And knowing that everyone we knew was learning these details about our new life at the same moment we were made it all too real, too fast, too soon.

We were exposed, vulnerable—having a gigantic, painful bandaid ripped off in front of the world.  I remember very vividly the belief that I would never lose that feeling of pain, of total horror and sadness and terror. I thought anyone who said that the feeling would pass was either a liar or a lunatic.

But, against all odds, pass it did.  And now we live our day-to-day lives much like anyone else; caught up in the routine of bus stops, homework, swimming lessons, and dance class.  We focus less on the horror of it and more on the reality.  And that reality, however weird it gets, seems increasingly normal.  Like any family, we try to plan a trip to Disney World with a dizzying array of books and options and guides…and then we increase the books and confusion by 50% when we consider how to handle the trip with an autistic child.  Like any family, we look forward to the neighborhood block party, but we rely far more than the other families do on the network of neighbors and friends to help ‘keep an eye out’ in order to be certain that Evan stays safely within range.  Like any mother does in mid-spring, I try to plan a summer that will keep a proper balance of free time, playdates, vacations, and day camps for all three kids.  I just have to make sure to work those things around and between Evan’s therapy schedule and his summer schooling.

However, I’d be lying if I said that the reality of autism lies solely in the logistical headaches.  Every week brings with it a new ‘oh shit’ moment or two.  But some strange mixture of experience, resilience, denial, and a kick-ass support system usually works to help us through the most harrowing moments. And if all else fails, we get through the day with equal parts coffee, chocolate, and cheap cabernet.

Still, I struggle with what I think “awareness” should mean to me at this point, four years into our dance with autism.  Looking beyond the obvious answers—letting friends and family know about autism, making sure to educate the babysitter and the neighborhood—where are we?  What sort of awareness do we need?

We need you to be aware when you vote.  Know that autistic children and adults are recipients of medical assistance programs and beneficiaries of state and local programs.  Know that your school district is legally required to educate special needs children, and ask questions of your school administrators regarding how they will do this.  The answers will affect not just my special needs child, but your typical one, as well.

You should also be aware of autism when you are speaking to your own children.  Know that they will likely encounter classmates on the autism spectrum—teach them what it means in ways they will understand.  There are books in the library and on that can help with that; one of my favorites is the Autism Acceptance Book.

You should be aware that autism affects the whole family, and that the other kids in the family are often most affected; that having a sibling who will throw a fit for no apparent reason can make the most well-adjusted child into a bit of a stress case.

You should be aware that most families who are dealing with autism are imperfect and messy and loving, just like yours.  We are not saints.  We have no more patience than anybody else.  We make lots of really good decisions and some really bad ones.  We are not idiots for trying the newest approach or diet; nor are we uninformed if we don’t.  We will fight like crazy for our kids, except for those days when we just can’t fight anymore, and on those days we go for a run, eat too much ice cream, ignore the outside world, or go to bed and try again tomorrow.

As we have in the past, our family will walk again this year in Autism Speaks’ Walk Now for Autism in Philadelphia on September 24 under the team name Evan’s Elves.  It is an uplifting day for us, a day of joy and hope and support.  We are always thrilled to give back to the organization that does so much for families like ours, and we appreciate those of you who have helped in the past and who choose to walk with us.

For me, awareness also means being aware of those who don’t have autism—those around us who regularly make every day life that much more bearable, normal, and enjoyable.  Those who make what we do –and what our children accomplish—so very possible.  And to you, I say thank you.