Will you help me show him he’s not alone?

Lately I’ve been really curious about what autism means to my 10-year old son, Jack.

I mean, I know he knows he has it. And we know he hates it. But what does it mean to him, exactly?

So, I conducted some high-level research. It went something like this:

“Jack, what does autism mean to you?”

(Ears covered, face screwed up.) “Stop TALKING about this to me.”

“But what do you think it means to have—“

NO MORE TALKING.”

So I had to go underground with my investigation, if you will. I had to resort to strictly observing him, examining and noting his reaction in certain situations and circumstances.

And as best as I can understand, Jack thinks autism means you earn things.

Let me give you an example. Last week I had to bring Jack for his eye appointment, which is another post entirely and something I’ll tell you all about it when I’ve fully recovered from the trauma of listening to Katy Perry for the whole ride and pupil dilation and that man’s shirt looks dirty.

The appointment was at 12:45. We needed an hour and fifteen minutes to get there on time, which meant we needed to leave by 11:30 am. This left me plenty of time to take a 9:00 Crossfit class, go home, shower, and pick Jack up from karate camp.

There was just one minor autism-related snafu: Jack remembered that the last time we went to his pediatric ophthalmologist appointment in Boston—on Tuesday, December 10th at 10:30 am and the doctor wore a black dress and we were in the exam room with light blue walls, to be exact—he stayed home from school all day. And so now he wanted to stay home from karate camp, too.

This did not parse well with my plans for working out.

But see, I have experience with this kind of thing. I know what I’m doing. I’ve read all the books and done all the research about child rearing and autism and parenting, and so I did what every good mother would do in this situation. I reached for the bribe.

“Jack, if you go to karate camp first I will buy you Snow White on DVD.”

“The Disney Special Platinum Edition or the Two-Disc Extended Edition.”

“Uh, whichever one you want,” I told him, making a mental note to myself to limit his time on Amazon.

“NO! That is EARNING! I won’t EARN A DVD. People with autism earn things.”

You see? He has somehow gotten the idea that having autism means you have to earn things. It should be fun trying to convince him to get a job someday.

When we first started talking to Jack about his autism, we tried to explain it in terms he could understand. We told him his mind works differently and sometimes his body moves because of something called self stimulation.

Naturally, he had a lot of questions. He wondered if he could die from it and why he has it and if he’ll ever get rid of it. He also asked, “Who else. Has autism.”

We kind of skipped over that one.

Then one day last spring he came off the bus and said, “I am the only one. In my class with autism.” And that afternoon, it dawned on me: he feels alone in the spectrum world.

Sure, I can tell him all the about the statistics. I could sit him down and say, “Listen, Jack, one out of  eighty-eight kids are diagnosed now, so there are literally a bajillion people like you, people who picture Wednesday as orange and remember what the ophthalmologist wore six months ago.”

(And yes, bajillion is a real number. I researched it.)

“Henry. Henry has autism,” he announced one afternoon. We’d just finished picking blueberries, and I looked over at my five-year old—who was trying to see if one of the round ripe fruit would fit in his nostril—and  back at Jack.

“I can see why you might think that,” I said slowly. “But he isn’t diagnosed with autism.”

“Who else. Who else has it.”

“Well, lots of people have autism, Jack.”

WHO.”

What do I say?  Of course I know other kids who have it, adults even. But it is not my place to open that dialogue.

So instead, I try to point out autism’s more savory qualities; his memory and his kindness, his determination and his progress. But it does little to abate the obvious loneliness, the isolation of being the only one in his family, in his class, maybe in the universe diagnosed with spectrum disorder.

It’s as though I’m telling him this:

“Jack you are a brilliant unicorn amongst us ordinary horses. You are so beautiful!

 

We know there are tons of you out there—bajillions, even—but we don’t know how to show you. We don’t know where they all are.

 

Oh, and magical unicorn? We don’t really get you. We don’t understand you. We are blinded by your colorful beauty but your tantrums scare the crap out of us. In fact, maybe it would just be better if you were a plain old horse like the rest of us. Then we could figure out how to teach you fractions.”

All summer Jack’s been telling me he wants his autism to stay a secret when he starts fifth grade in the fall. He wants to keep it from the teachers and principal and students in middle school. As of yet, I have not had the heart—or the courage—to tell him they already know, that something called an IEP and paraprofessionals and a modified course load have been in the works for a while now.

I never had a concrete plan or vision when I started writing this blog. Mostly I did it because my publisher insisted I start one to promote the book.

But it’s been over two years now, and looking back I guess I also did it so I would feel less alone. From the safety of my little office I could share my heartache and make my jokes and connect through cyberspace with other people like me who are also balancing autism and parenthood and play dough and swimming lessons. And if there was a smidgen of autism awareness to the whole thing, well, that was just a bonus.

But ultimately, I have failed. I have failed because, while I feel connected to a wider community of people, the boy sitting in the room next to me—the boy with autism—feels confused and scared and ashamed.

He feels alone.

More than that, he wants to hide something that is as fundamental and essential to him as his beating heart or his thinking brain or the freckle on his right forearm. He wants to keep autism a secret.

I wish to somehow show him that there are, in fact, a bajillion more people like him in this world. That there are boys and girls and fathers and daughters who cover their ears during fireworks and squint against fluorescent lighting’s blinding glare. People who have IEP’s and aides in the classroom and battle anxiety’s fierce snake.

I want to show him that many of those same people play beautiful music and have jobs to earn money and love to go to the movies and always eat ice cream after dinner.

They are, in essence, just like him.

And so readers, I was hoping you would help me show my son he’s not alone. I was hoping I could call on my own community in order to expand Jack’s solitary world.

Would you click here to go to my Facebook page, and add the name of someone you know with autism in the comment section below this post?

Share as much or as little as you like. Share the name and age and of your son or daughter or neighbor or student or brother or maybe even yourself. Share a picture if you feel comfortable. Tell us where you live if you like, or add a little something that makes this person special.

I can’t wait to see what a bajillion looks like. I’ll even go first.

My son Jack has autism. He is ten. He is as magical as a unicorn.

My son Jack has autism. He is ten. He is as magical as a unicorn.

 

 

 

 

Why Girls Are Harder To Raise Than Boys

Dear Rose,

I have a confession to make. I didn’t want to have a girl.

We kept your gender a surprise throughout the pregnancy, but I was so sure you were a boy. We already had three boys, I knew how to handle boys, and everyone knows boys are easier.

But on a hot summer morning in late July, out you came; a pink baby girl.

I prepared myself for all the things people said were hard about girls, the whining and the tantrums and the emotional landmines. The battles over dresses and headbands and the right kinds of tights.

But so far, we haven’t really had any of that stuff.

I mean, yes, maybe you’ve had a few meltdowns over nothing and you cry a little more easily than your four brothers, but for the most part you are a very easy, pleasant girl. Quiet. A little on the serious side, but slow to anger and quick to smile.

But you’re still hard for me.

The hard part is that in some ways, the world is bossy when it comes to girls. The world wants to tell girls they should look less like this and more like that and eat this and not that and wear these but never those.

In some ways, the world is in charge of our daughters.

When you were in kindergarten, you came home one day and said you needed a new winter coat because a girl at school had told you your purple one was a “chubby coat” and it made you look puffy.

Looking in your teary eyes, I very nearly cried myself.

I was frantic. I had no idea what to do. Should I run out and buy a new coat? Something sleeker, trimmer, maybe a pink one?  Should I call the teacher, the principal, the other girl’s mother?

See, you are like the most perfect cake with delicate pink frosting. I worry the wrong comment or remark might cut into you like a knife, collapsing the whole sweet confection until you’re nothing but crumbs of self-doubt and insecurity and fear.

The idea of you feeling bad about herself—feeling for one teeny second like you are too much or too little or too tall or too puffy or too anything–makes the room stand still. And so I step gingerly, lightly around subjects like weight and appearance, diet and exercise.

It’s so easy to reach for the typical words we use to describe girls; beautiful, pretty, nice, cute. And I use them a lot for you. But sometimes they have a hollow ring to them, like I’m recycling the same time-worn phrase over and over.

One of the teachers from school once told me that as a mother with a daughter, I have to do more than just stop complaining about my own appearance. I have to make an effort to appreciate myself, to say things like, “Doesn’t my hair look nice today?” and “This skirt fits me well.”

This is very hard. It is hard for me to stand in front of the bathroom mirror and look at my reflection and try to come up with something nice to say. But then I look down and see a small blonde girl hovering at my elbow, absorbing every move I make with wide eyes and open ears. So I take a deep breath and say, “I like my new haircut!”

In that moment, I know that only I can turn off the world’s white noise and give you a voice of your own, one that says I am strong I am good I am everything I need to be.

I am enough.

Sometimes people wonder what it’s like for the rest of you to grow up with Jack, to have a brother with autism who is rigid and bossy and makes you watch Dumbo a hundred million times. They ask me if you are worried or scared or confused.

The truth is I don’t know how you feel about Jack and his autism. I’ve never asked you.

But I do know you are the only one who calls him Jackie.

I know that every single day after school last year, you waited until your older brother boarded the big yellow bus and then you walked over to his aide and asked, “Did he have a good day today? If he gets upset, you can come get me. Because I know how to help him.”

I know one day we were making lunch together in the kitchen and you said quietly, “Mom. No one sits with Jack on the bus. I am sad he has no friends.”

I didn’t say anything, I just kept my head down and my eyes trained on the green apple I was peeling.

“I wish I was in fourth grade so I could sit in the back with him.”

I don’t need to ask. I know you are worried and scared and confused. I know your sweet heart aches for him.

But I know you love him. I know you are one of the few people who can add a soft touch to his rigid world and reach his complicated heart.

You know what? I worried about you and that stupid puffy coat all through kindergarten. But I never did buy a new one. The next morning after breakfast you got up from your chair, took it off the hook, and put it on. And just before you walked out the door Jack said, “Zip it tight. It is cold.”

Rose, today is your birthday. You are seven.

Your favorite food is steak and your cheeks turn pink when you jump rope. You get carsick on long rides and you are missing your top two teeth and you just started wearing glasses. You adore your Daddy.

Today, and every day, you are strong and good and fast and sweet and beautiful and nice and special and smart.

You are enough.

Slowly, your voice is growing, building, blossoming, and when you speak I hear your strength and compassion, tenderness and love.

Especially the time you called out softly, “Jackie, sit here. Sit next to me.”

Happy birthday, my sweet girl.

Rose and her birthday flowers.

Rose and her birthday flowers.

 

 

Autism Smart

“Can you believe Jack made this?” the karate instructor said, handing me a small white flag.

“He did?” I asked, turning the piece of fabric over in my hands.

“Yes!” she said excitedly. “All on his own. We told them to use the space to describe themselves, and that’s what he drew.”

He’d colored boxes in the four corners of the rectangle, and written care, love, nice, and autism in each. In the center were four hearts with the words the hearts of awareness written unevenly above in red marker.

I looked back at her face, open and sweet, and noted her eyes had a glimmer of tears.

“I just think it’s so amazing, what he wrote.”

“Oh, it is! Amazing.”

But standing in the lobby of the karate studio, picking all five kids up from camp, I felt almost disconnected from Jack’s artwork. For some reason, I didn’t feel thrilled or excited or emotional in the least. I felt nothing.

Just then all five kids rushed up the stairs to where I stood, Jack sandwiched between two of his brothers.

“Hey!  Jack!  Did you–“

“Do NOT ASK ME about that FLAG!”

“Okay Jack, calm down. Let’s go.”

And home we went, to an afternoon of badminton and swimming. But I kept thinking about the flag, and whenever I caught a glimpse of it on the counter, jumbled amongst the rest of the papers and artwork from camp that day, I felt uneasy.

I asked Jack about it a few times during the day.

“Nothing. I don’t know.”

“What do you mean you don’t know?”

“I don’t know why I wrote it. It is just done.”

Later that night, as I was cleaning the kitchen after dinner and putting the day’s paperwork away, I realized why the flag bothered me: it didn’t seem like something he was, well, smart enough to think of and draw.

A lot of times people comment how smart Jack is; how uncannily brilliant people on the spectrum tend to be.

Huh, I usually say to myself. You think?

I’m not saying this to be mean. Joe and I have five kids, and as with any group, we have what I would consider to be a range of intelligence. Without naming names, we have one who is quite bright but incorrigibly lazy, two hard workers and one bound for juvie.

(Okay, I gave that last one away with the juvie thing. That was obviously five-year old Henry.)

And then we have Jack. Jack’s brain is about as easy to deconstruct as, well, I can’t come up with a good analogy here but you get the point. It’s tricky.

Yes, he has an extensive memory for seemingly random information; when we last went to Dairy Queen, what time Caillou is on, how old Rosa Parks was when she died.

But does the ceaseless acquisition of obscure information mean a person is smart?  Is the constant cataloging of dates and times and Oreo Blizzards a sign of intelligence?

Merriam-Webster defines smart as very good at learning or thinking about things, and showing intelligence or good judgment.

You see? This definition doesn’t mention one single thing about Nazi Germany facts or Disney movies or memorizing license plates. And we all know about his occasional lack of judgment, especially when it comes to kayaks.

How, exactly, does he process information?

He is good at a lot of things. He makes breakfast almost independently now and he has figured out how to manipulate the Rubix Cube so two sides have solid colors and he always, always reminds me when my nephew’s birthday is.

But there are other things that remain out of his grasp. Congruent with a spectrum diagnosis, Jack has a difficult time understanding our mood or expressions. He is always astonished when I get aggravated over things like asking me ninety thousand times if we bought the tickets to see Maleficent.

At age ten, he is painfully naïve. He believes every single car commercial he sees, and thought Breast Cancer Awareness month meant women only get breast cancer during the month of October. (He pronounced it breest cancer.)

And socially?  Well, please. Once again consistent with autism, social cues are like another language for our Jack. I mean, why wouldn’t you tell one of the teachers at school to stop wearing that purple plaid skirt she wears because it’s so ugly it makes you sick?

Just before he went to bed I asked him one more time about the flag, what made him think to write hearts of awareness and color a blue heart.

“Because. They are always saying LIGHT IT UP BLUE for autism.”

The next morning the kids all had karate camp again, but five-year old Henry was difficult to rouse. He stayed nestled in bed long after the other four were downstairs eating breakfast, only his chubby round face showing above his blankets.

We each took turns calling up to him, and I grew irritated while I organized the other kids’ lunches and bathing suits.

“Henry!  You are making us late and you are going to miss breakfast!”

Eventually he wandered downstairs, wearing a red striped shirt and mismatching shorts. “I was sleepin’,” he announced proudly.

“Henry, LOOK!” Jack shouted.  We all turned saw him standing at the toaster, buttering a warm bagel. “I made you BREAKFAST. So you can EAT. We won’t be LATE.”

I paused for a second. “Uh, Jack?”

“WHAT?  No talking now, we will be late.”

So I turned back to the whirlwind of our morning routine, packing bags and applying sunscreen and shuttling them all out the door.  But once I dropped them off and waved good-bye, I came back to the quiet house and noticed the flag sitting on my desk.  I turned it over in my hand again.

Care. Love. Nice. Autism. Hearts of awareness.

I thought about how Jack worried about me all October long, counseling me in his monotone voice about  mammograms and telling us to wear pink for Breast Cancer Awareness.

I thought about his progress with our puppy, Wolfie, over the past three months; his slow and steady steps from you have ruined my life with a dog to furtive pets and eventual walks.  Now, together, they run.

I thought about awareness, which Merriam-Webster defines as knowing and understanding a lot about what is happening in the world or around you. It is feeling and noticing that something exists.  It is understanding a situation or problem.

I thought about breest cancer and bagels and hearts filled in with brightly colored markers.

I decided there is Merriam-Webster smart. And then there is autism smart.

Autism smart is learning the things that come so easily for everyone else, things like caring and loving and being nice enough to toast a bagel so your brother doesn’t go to camp hungry.

It is pushing past the heartbreak of I am different to dream of bright blue lights beyond. It is conquering a phobia and racing a small tan puppy around the yard.

Sure, Jack has more to learn than most. He has to learn to stop asking strangers about Annie Frank and to maybe ask only three times what time the movie starts instead of forty. He needs to recognize a smile.

But this doesn’t mean he’s not smart. It just means his mountain is a little longer, a little steeper, a little harder to climb. But climb it he will.

Looking down at the flag in my hands, I felt emotional for the first time.

My son is so smart.

IMG_4693

 

Jack and Wolfie

Jack and Wolfie

 

The Elephant in the Room

Sometimes people write to me and ask questions. They ask me about anxiety and medication and weighted blankets and good ideas for sidestepping tantrums.

Although I never have any good advice to give, I love reading about people’s families and hearing their stories of autism and spectrum disorder.

I also love it because it gives me a chance to announce that I am working and must be left very, very alone, flounce into our tiny office, and shut the door. Then I fire up my laptop, and promptly log on to Facebook or Amazon.

Once I’ve ordered the skirt and downloaded the book and researched inane trivia like whether or not cats can swim (they can, they just don’t like to), I turn back to e-mail and craft my response. In order to hide how confused I am myself about autism, I start my answer with really smart-sounding words. It usually goes something like this:

As you know, autism unfolds differently for every individual.

See? SMART.

Last Saturday, I checked e-mail and read this message:

Dear Carrie,

I need help telling my son he is on the spectrum. He is 10 and has no idea. We are not sure how to proceed. I wondered if you had written anything you might direct me to, regarding telling your son. I would appreciate it so very much.

You might like this, today is my birthday, and as his gift for my “special day” my son is going to allow me to sing! He promises not to cover his ears and scream…for one day. But you know what, I think I will refrain.

Sincerely,

Kim

Ha! So easy! I already wrote this blog post about how we told Jack he had autism. It happened on the morning of my birthday last year, and I compared it to telling my older son about how babies were made; both tricky subjects without an exact timetable.

My fingers hovered over the keyboard, ready to copy the link and send it along to Kim. Maybe I would even add a quick Happy Birthday to personalize it a little!

At some point late last summer, Jack began to connect the dots. He started to look around our family and realized he was the only one going to summer school, the only one with an aide, the only one who needed to get up from the dinner table to jump around.

I pictured long, enlightening conversations about self-stimulation and license plates and why he takes a little white pill before bed every night. Do not ask me why I pictured this, seeing as I’ve never had a long conversation with this child in my life. Few have been particularly enlightening. Mostly, they center around which day we should have pancakes and when toilet paper was invented.

Nonetheless, I was ready. I was excited to finally name the elephant in the room and hear Jack’s side of the spectrum story.

Elephant, thy name is autism.

(For no reason I can explain, I like to say that last line in a faux British accent, kind of like Sherlock Holmes. Try it.)

But on the morning after my birthday, it did not go as planned. As hard as Joe and I tried to point out the elephant’s most interesting qualities; his beautiful silky skin and unfailing memory, Jack wasn’t buying it. He could not see what we see. He did not want the elephant.

In fact, his exact words were, “I do not want it. I want it out of me.”

Did we tell him too soon?  It certainly felt like the right time. I mean, you can only pretend to ignore your son for so long when he asks why he has to go back to school in July while his three brothers and one sister get to swim at the town pool. And we wanted him to hear it from us first.

Would I have changed the way we told him? I don’t think so. We were home, in a quiet space. We answered his questions honestly and carefully. We assured him he was loved, and that he was the same little boy he was before.

Textbook, really.

So why do I have a pit in my stomach when I remember our conversation, and all the subsequent exchanges with Jack about autism?

Because he hates it about himself. He is embarrassed and afraid and ashamed and confused. And this is heartbreaking.

Just last week I had this conversation with him:

“I do not want. To go. No summer school.”

“Jack, I know, but you have—

“Is it because I’m bad?’

“No, of course not—

“Is it because of autism.”

“Not exactly. It’s more complicated than that.”

“Is it because I didn’t pay attention all year when it was math.”

“Well, KIND OF!”

Jack never used to mind summer school. When he was younger I just loaded him on the small bus and waved him off, excited to enjoy a couple of hours without having to worry if he was trying to start the car or investigate the toilet.

(Now he won’t even ride the small bus. Now I have to drive him. When he started first grade he was adamant about riding the big bus with his brother, Joey. He put his six-year old foot down, if you will.)

But there is a price to this knowing, tendered in the currency of I am the only one in my family who goes to summer school and why doesn’t Charlie have an aide.

I mean, imagine someone telling you that you’ve got this condition—this diagnosis—and it’s not your fault and you’re not sick or anything and there’s nothing really wrong with you, but for your whole life people may or may not judge you and the hot days of summer will be punctuated by the hum of the classroom. You will need someone to escort you to the bathroom in middle school.

There is probably never a good time to hear you are different from us.

I am beginning now to glimpse the war that is waging within my boy; his fight to push the elephant back to his corner and get rid of something so fundamentally his. I am grateful for his spirit, but some days I just wish I knew which side of the battlefield to stand.

Shortly after we told Jack about autism, my friend Audrey and I went to hear author Daniel Smith speak about his memoir of anxiety, Monkey Mind. Standing before the audience in the tiny crowded bookstore, he explained how his mother named the anxiety for him at an early age. It made the concept of himself less limber, less flexible. From that point forward he felt tied to the label of anxious.

Sitting on the folding chair in the front of the room, it dawned on me that maybe, by naming autism, we boxed Jack in. We made him less limber.

Although we gave him the information, there is nothing he can do about it. Just knowing he has autism doesn’t mean he will at once start being flexible or stop stimming or gobble up slimy yogurt.

I imagine it’s like dropping the cutest little kitty-cat into a lake and asking him to swim across to the shore beyond. He would hate it. He would screech and flail and complain. With big kitty eyes, he would beg you to carry him to dry land, where he felt safe.

But then I thought about the defiant six-year old and his clipped speech, big bus big bus like Joey. I chuckled remembering the first time Jack tried clams casino in a little seafood restaurant outside of Portsmouth. I thought about my ten-year old walking our new puppy down the driveway.

And it occurred to me: maybe I should worry less about where to stand on the battlefield, and just get the hell out of his way.

Jack is a fighter, and he will keep on fighting to make his own way in the world, to cross between the shores of autism and not-autism. Who knows?  Maybe he’ll kick his toes up and float buoyantly on his back somewhere in the middle of the great, vast lake.

Because it’s true that cats don’t like the water, but elephants are excellent swimmers.

Dear Kim,

As you know, autism unfolds differently for every individual.

All I can say is you’ll know the right time to tell your beautiful son about his diagnosis. And the right time will also feel wrong and then right again and wrong once more.

Okay, basically, there is no right time.

Some days it may feel like there are three of you standing in the room together: you, your son, and a giant elephant lurking in the corner. At times, you may all stagger under the tremendous weight of I am different but I want to be the same, show me how to be the same.

This will hurt.

In fact, your heart will feel like it is breaking into ninety million pieces and it will be hard to breathe.

But ultimately, autism is his to own. He alone will bring it out into the light, examine it and unravel it, make sense of it and peace with it. Do not underestimate his strength.

In the meantime, I only have one piece of advice. Sing.

Sing and screech and yowl like a cat. It’s the best way to coax the quiet elephant into the water for a long, cool swim.

Best,

Carrie

P.S. Happy Birthday!

Dark-haired Charlie and his older brother, Jack.

Dark-haired Charlie and his older brother, Jack.

The Person I’m With Has Autism

“Hey Carrie, it’s me, Sandy. Listen, I had an idea for you—”

Sandy is a dog trainer. We started to work with her after we got Wolfie, because we have no idea what we’re doing.

“Oh, I’m so glad you called! I’m kind of worried he doesn’t like his food. He isn’t eating it as fast. And when he chews it he kind of makes a funny face, you know? Like he—”

“I’m not talking about Wolfie,” she cut in impatiently. “I’m reading your book—”

“You are? That’s so nice! Did you get to the part about dogs?  I know, it’s so sad because Wolfie isn’t in it. But we didn’t have him yet!  Maybe I should write a new book, just about him. I could call it The Wolfman. Or Wolferoni, that’s kind of his nick—”

“No, it’s not about dogs,” she said brusquely. “I’m reading the part where you say you wish you had some kind of sign to tell people about Jack and his autism.”

She went on to explain that she took care of her mother, who had Alzheimer’s, and how the Alzheimer’s Association issued family members little business cards they could give to people at the hair salon or the grocery store or the library.

“They said, ‘The person I’m with has Alzheimer’s. Please be patient.’ This way, my mother didn’t have to feel self-conscious but I could help people understand her a little better.”

“Huh. That is a good idea,” I said thoughtfully. I went back to chatting about puppy food and house training, and although I didn’t forget the business card idea altogether, I didn’t think about it too much more. Until we went on vacation.

Because we hate ourselves, this June Joe and I decided to take the kids to Texas.

(For those of you who have never been, it’s hot in Texas. It’s really hot in June. In fact, the Texas heat in June makes the Bikram yoga hot room feel like you need a sweater. It’s death-hot. I-can’t-breathe-hot. Someone-turn-off-the-sun-hot.

I hear it’s even hotter in July. August is too hot to talk about.)

But while we may hate ourselves, we love Joe’s sister, Elaine. And Elaine lives in Texas. So for the second year in a row, we packed up five children and four suitcases and headed west.

Excited beyond measure, Jack filled his carry-on with his usual favorites; his stuffed bunny and moose-shaped pillow, nasal spray and Chapstick. Like always, he brought his rigidness and bossiness and how many more minutes-ness.

He also brought the deepest, most awful sounding cough you’ve ever heard in your life. It sounds like a cross between croup and a chainsaw. And he is the worst cougher you’ve ever seen.

I know, I know, kids cough, right? They get colds and they cough and sometimes—gasp—they don’t even cover their mouths! But Jack takes coughing to a whole new level. Something to do with that whole controlling your body thing. He jumps and flails and throws his head back. He amplifies.

Three times, I brought him to the doctor’s for antibiotics and inhaler things and new recommendations for cough medicine. Three times, the doctor promised me that it wasn’t whooping cough or bronchitis or the plague, and that we were safe to travel.

So, last Monday morning at 4:30 am, the seven of us were off.

Fast-forward two hours later: all of us seated at a table in Johnny Rockets in Logan Airport, kicking off our trip with greasy hash browns and sticky pancakes. Cue tremendous coughing fit. A woman and her son, who had nodded and smiled pleasantly at us just moments before, picked up their trays and moved three tables away.

“JACK!  Cover your mouth! And sit down!”

“I can’t. I can’t. I don’t know what my body is doing.”

A few minutes later we were jostling our way to the gate, Jack and a security man collided. “HEY!” Jack screamed at him.  “Watch where you are GOING!  That was RUDE.”

“JACK!” I turned to the man. “So sorry. He didn’t mean that!  Sorry. He’s, um, well, he gets overwhelmed.”

As we boarded the plane I thought about Sandy’s suggestion for business cards. Settling into my seat, I considered a few ideas and giggled to myself:

Someone I’m with has autism. Guess who.

Someone I’m with has autism. Now hand me a drink.

Someone I’m with has autism.  Please do not mention anything about toilets or spiders or Wyoming.

Next to me, Jack boomed, “What are you LAUGHING ABOUT. Have you seen what kind of toilets they have on this AIRPLANE?”

When Jack was just a little guy, I could smile and announce, “He’s on the autism spectrum,” as loudly as I wanted. He had no idea. But now he’s ten, and he knows. And understandably, he doesn’t like the label.

More than just the label, it’s autism in general he resists. He hates it. Almost every day now he mentions getting rid of his autism, making it go away. He doesn’t want to be different.

So, there’s no announcing it anymore. Now I kind of shift my head to one side and mumble something like, “He’s, um, you know.” Sometimes, for no reason I can explain, I clear my throat.

But they don’t know. That’s the thing. They look over at him and glance back at me and overall, there’s a lot of confusion.

For the rest of our trip, I thought about how maybe business cards really are the answer. It would save everyone a lot of awkwardness, like when  Jack asked the server at Friendly’s if her mother was still alive or wondered out loud in the middle of SeaWorld, “What does PIT HAIR FEEL LIKE?” He was standing next to a man with no shirt on at the time.

It could promote tolerance and acceptance. It could make the world love autism. Most of all, it could save my son from the embarrassment of an announcement.

Oh!  I almost forgot to tell you what else Jack brought on our Texan vacation. Why, he brought his latest fixation. And what is this latest fixation, you ask? Black widow spiders or license plates or birthdays or toilets? Nope. Nothing as cute and endearing as all that.

Right now, he’s fascinated with—wait for it—Nazi Germany.

At the airport in Austin, Jack and I stopped for some water and gum while we waited for our plane to board. Just as I handed my credit card over to the young 20-something behind the kiosk, he blurted out, “Did you KNOW. Annie Frank died when she was fifteen.” The guy blinked at him and looked back at me. I cleared my throat.

“JACK!” I whispered-shouted when we walked away. “Don’t ask people about that if we don’t know them. And it’s Anne Frank, not Annie.”

“It has an ‘E’,” he said stubbornly. “So it’s Ann-ee. The concentration camps. Did they have campfires?”

Suddenly I felt very tired. As we stepped on the moving concourse, I closed my eyes against the naiveté of it all; the absurdity of a boy who has the emotional maturity of maybe a six-year old trying to grasp the horror of a concentration camp. The absurdities of pit hair and coughing and even autism.

Standing next to Jack, I realized it’s not the lingering gazes or the small stares or even the occasional child’s pointed finger that I mind. I don’t. It’s that people don’t know him.

I think more than today’s autism buzzwords of tolerance and acceptance and embrace what is different and blah blah blah, I just want the world to know him.

Trust me, I realize this is a lot to ask, especially since I myself often fail to see beneath autism’s tough exterior to the little boy hiding underneath. It’s certainly a lot to ask of a 2 x 3 piece of cardstock.

But I want people–I want you–to know that he is so very funny. And interesting. And smart. And rude and abrupt and curious and innocent and scared. He is trying his best to master a difficult world, to understand manners and how to cover his mouth and use polite words and keep his body still. But I don’t know how to fit all of that on a business card.

 Someone I’m with has autism. Please give him a chance and try not to judge him. This will be hard.

Someone I’m with has autism. He might ask you a lot of weird questions but he just wants to know more about you.

Someone I’m with has autism. He is doing the best he can.

On the flight home Joe sat next to Jack. I relaxed back in my seat, glad for the four-hour respite from the hacking cough and the stimming and Annie Frank. About halfway to New Hampshire, Joe reached over and tapped my shoulder. I looked up from my Nook, startled.

“Jack just told me he prays to God every night. He prays he’ll take his autism away.”

I cleared my throat. And as I turned back around, I thought of the perfect business card.

 

Jack and Aunt Elaine

Jack and Aunt Elaine