The Boy Behind Glass: how I learned self-love parenting a child on the spectrum

When my son was an infant, before he was diagnosed with autism spectrum disorder, I accidentally locked him in my car.

After grocery shopping, I strapped him into his car seat and closed his door.  When I went around to the driver’s side, I found it locked.  I circled the car in a panic, pulling every handle.  All the doors were locked.  I could see my keys inside, resting on the console.

I pressed my face against my son’s window.  He stared blankly ahead, unalarmed for now.  Through the tinted glass, I made out the shape of his arms and legs extending like scarecrow limbs from the car seat.  I mouthed through the glass, “It’s okay.  I’m here,” but he wasn’t looking at me.  Soon he started to whimper, then cry, then wail.  I desperately scanned the parking lot for something to smash through the window, but there was nothing.  I called 911.

Everyone assured me it was a common mishap, the kind of thing that can happen to anyone, especially a frazzled and sleep-deprived new mom.  For me, it seemed to reflect a deeper disconnect between my son and I.

The first time I recall something amiss, I was getting my son dressed.  I had laid him out on the bed, my face dangling above his.  I smiled and cooed.  Instead of smiling back, my son rolled his head away from me.

There were moments when he and I bonded: we exchanged giggles and grins.  Then he’d seem to withdraw into himself.  His eyes grew glassy and distant, no longer looking at me but through me.  It felt like a pane of glass had gone up between us.

He became easily agitated, often for no apparent reason.  Once he could walk, he’d run through rooms crashing into furniture and knocking items off shelves.  He let out panicked, high-pitched cries.  When I tried to pick him up, he’d push me away or pummel me with his tiny fists.  I could not soothe him.  I felt the same powerlessness as when I had locked him the car, seeing him but unable to reach him.

I worried his behavior was the result of his difficult birth.  After an emergency C-section, he was whisked away because he wasn’t breathing.  The first time I saw him was through a Plexiglas incubator, his rooster crown of red-hair swirling from on top of his badly dented head.

We were separated for his first week during which time I underwent a second surgery and he recovered in the NICU.  I was too sick to visit him, so my husband hopped between hospital floors, bringing me reports on our baby that I couldn’t bear to listen to because I should have been the one delivering them.

From his earliest months, my son favored my husband.  When we put him down on the floor, he’d crawl toward his dad.  When hurt, he’d run to his dad for comfort.  If I tried to hold him instead, he’d recoil and shriek, “Daddy!”  When the three of us played, he only spoke to and looked at my husband.

I didn’t have children to feel loved, but I certainly thought that was part of the deal, that along with poopy diapers and sleepless nights, comes a primal and unsurpassable parent-child bond.  As the mom – the one who carried, gave birth to and suckled my son – I fully anticipated being his number one.

Instead, he seemed to prefer even strangers over me.  We attended Gymboree classes.  At circle time, when the other kids sat on their parents’ laps, my son refused to sit on mine.  He’d attempt to climb onto some other mom whose lap was already occupied.  Embarrassed, I’d pull him off and hug him to my chest.  He’d wriggle free and run away, leaving me sitting alone in a circle of singing twosomes.

The less my son wanted to do with me, the harder I worked to get his attention.  I struggled to remain animated and upbeat, while inside I desperately wondered what I was doing wrong.  Was I not engaged enough?  Too engaged?  Did it all stem from that first week of separation when I hadn’t been there for him?  Or, was it as I’d always feared – that I just wasn’t that lovable?

In my self-absorbed state, it never occurred to me that something else might be going on, that my son’s rejection of me wasn’t so much a rejection but a symptom of an underlying neurological disorder.

Our relationship had triggered a very old and deep wound in me.  I’d always struggled to feel loved, or loved enough.  I relied heavily on outward affirmation to feel secure and valued.

With a therapist’s guidance, I realized I was burdening my son with my own unmet emotional needs.  I’d inadvertently put a vulnerable child in charge of my own sense of self-worth.  It wasn’t his job to ensure I felt loved; it was mine.

I began to focus more on myself.   I had my own inner child to attend to.  In those moments I felt rejected I tuned into my own feelings and ways to self-soothe.  When I longed for a look or a hug from my son, I physically wrapped my arms around myself.

At the age of three, my son was diagnosed with autism spectrum disorder.  By then, he was enrolled in preschool and his challenges had become more apparent.  He didn’t just struggle to relate to me but to people in general.

Pieces began to fall into place.  I learned about sensory processing disorder, a component of autism, where kids on the spectrum become overwhelmed by sensory input.  The pattern of withdrawal and aggression I’d observed in my son was his natural fight or flight response to too much stimulation.

It now made sense while my son would gravitate toward my husband who, by nature, is more reserved, as well as having large, cradle-like arms and a low, even voice.  I could see the appeal of that calming presence over my panicked insistence on physical closeness and eye contact.

I look back on Gymboree classes and think what a sensory overload that must have been for my son.   I regret I was too wrapped up in my own reactions to realize what he needed.

In some respects, I’m thankful my son has autism.  If he were a typical child who reciprocated love in a more typical way, I would not have had to examine myself so carefully.   I could have gone on indefinitely projecting my own insecurities onto him.

Now I can see how deeply connected my son and I actually are.  We have our inside jokes and our own special ways of relating.  He is drawn to my playful and adventurous spirit.  Now that he’s more verbal, he tells me he loves me.  Sometimes he’ll grab my face and smoosh it against his own so that there’s nothing at all separating us.

It still hurts when my son withdraws, or when he is so worked up, he’s unreachable.  I know it’s not about me – he’s struggling to regain his own equilibrium – but it’s hard not to take personally.  I feel that same stab or rejection.   I’m locked out, standing outside the glass, mouthing words he cannot hear.

I take a breath and tell myself, It’s okay.  I’m here. 

HCC, 2e and No More Homemade Valentine’s

There’s a wave of giftedness sweeping across Seattle and my son’s not part of it.

Every parent I talk to these days has a child who is part of the “highly-capable cohort” (HCC for short) – the latest term for kids who score in the top percentiles on standardized tests.  In the disability world, these kids are called “twice exceptional” or 2e – meaning the student has special needs but also extraordinary cognitive gifts.

My son Ted is just once exceptional, being on the Autism Spectrum.  That’s not to put him down.  Ted has tremendous talents (just see what he can do with a couple of bungee cords, unlimited dental floss, and a stack of traffic cones), but by academic measures, he’s behind.

Part of me thinks, So what?  He’s only in kindergarten! 

Another part worries that if we let him fall too far behind, his self-esteem will suffer; he’ll be excluded from the mainstream classroom and further alienated from his peers. 

Yet a third part – a painful voice inside that I don’t often acknowledge – wonders if Ted just wasn’t meant to keep up.  Is it fair to place the same expectations on him as typical kids?  Perhaps I should accept the limitations of his disability – if only I knew what those were.

 It wasn’t that long ago that Ted couldn’t engage in any kind of learning.  If asked to draw, he’d hurl the marker, hide under a table, or turn into an obnoxious, nonstop meowing cat – or all three.  When I attempted to have him count aloud, he’d withdraw and suck his thumb.  He refused to even glance at the pages of the alphabet classic Chicka Chicka Boom Boom.

Now, after hours of therapy – occupational, behavioral and psychological – he can write his own name and count to ten.  These seem like huge accomplishments until I witness his classmates writing whole sentences and counting to one hundred.

I struggle to find the balance between affirming Ted right where he’s at and challenging him to the next level.  Other parents (usually those whose kid is reading above grade level) tell me to relax.  He’ll learn when he’s ready, they say.  But Ted is not the kind of kid you can just wait around on and see what naturally emerges.  He requires gentle but persistent prodding, untold patience, and ingenuity.

Once, exasperated in my efforts to teach him the alphabet, I wrote the letters in aerosol cake frosting and let him lick up those he could correctly identify.  His letter recognition skyrocketed.  Last fall, faced with a long list of “sight words” Ted was to memorize by year end, I began writing one word per week on his thigh in permanent marker.  Now every bowel movement is a learning opportunity.

Admittedly, there are times I overdo it, like this past Valentine’s Day.

I decided that this year Ted would make his own cards.  I came up with the idea of cutting sight words out of the newspaper.  My plan was to help Ted rearrange the words into simple yet heartfelt Valentine sentiments – Be mine, You’re special or I like youand glue them onto cardstock.

I bought reams of Valentine-themed stickers, along with some more boy-friendly monsters and robots.  I loaded up on DOT markers, gluesticks and heart-shaped doilies.  I even broke my household ban on glitter glue.  Then I asked Ted to join me for this fun and educational activity.

In actual fact, Ted had already memorized a dozen or so sight words.  That should have been cause enough to pause and celebrate.  I have a bad habit of raising the bar the moment he reaches it.  He can handle ten words?  Great!  Let’s give him fifty.

I probably don’t need to tell you how all this ended – with me up late the night before Valentine’s Day, slapping sight words and hearts stickers onto 23 pieces of cardstock and cursing myself mightily.  The following morning, in exchange for a handful of M& M’s, I was able to get Ted to write the names of three classmates.  I wrote the rest in exceptionally neat handwriting – just to keep those “HCC” parents guessing.

Truthfully, we don’t know what Ted’s academic future holds.  In that regard, I don’t think we’re all that different from the parents of any five-year-old.  Our job remains the same: to encourage our kids to express their full potential while still allowing them a certain amount of freedom to learn on their own terms – even if it means store-bought Valentine’s.

Our school science fair is coming up.  Participation is optional.  On his own, Ted decided to do a project on volcanos.  We hopped on the computer and googled “How to make a volcano.”  Soon the two of us were up to our elbows in paper-mache as we molded the mountain Ted has christened Old Smoky.  He talked about shifting tectonic plates, volcanic islands, and lava flow.  There was no counting or reading involved, but it was learning at its best.

It reminded me what every parent knows in their heart:

My child is gifted.

My child is capable.

My child is exceptional in more ways than I can count.

 

 

 

Food Fight At Whole Foods: Stick It In My What?!

Let me begin by saying I’m not proud of how I behaved.  There’s no excuse for getting in a food fight with another Whole Foods customer.  I also don’t have a color theme for this entry, unless it’s the pallid shade of oatmeal I purposely knocked on the floor.

Every Sunday I take my two boys – Ted, five-years-old and on the Autism Spectrum, and Tom, three-years-old – to Whole Foods for breakfast.  These outings give both boys much-needed practice on how to behave in public.  It also happens that the scrambled eggs at the Whole Foods breakfast bar are the only ones Ted will eat.

Before exiting the car, I go over the ground rules: calm voices, safe hands, stick together.  Our first stop is the bulk candy aisle where I load up on chocolate Sun Drops to intermittently reward these “expected” behaviors.

Something about Whole Foods sets Ted off – the high ceilings, bright lights, the assault of color and sound.  His body revs up.  His voice escalates.  He makes loud random noises and his limbs wing out in all directions, accidentally knocking things over.  Every item seems to call out to him to be grabbed, squeezed, fondled or flung.  Once he tore open a bag of hamburger buns before I could stop him.  Another time he smashed a pomegranate on the floor “to see what’s inside.”  We avoid the wine aisle at all costs and don’t even get me started about the risks associated with the salad bar.

We get looks.  They’re not the same, sympathetic kind I used to get when Ted was a toddler melting down or running loose through the grocery store aisles.  Although his condition hasn’t changed, social expectations have.  These looks communicate one thing:  Get your kid under control.

People, I would if I could.  A large chunk of my life is devoted to trying to mitigate, modulate and eradicate Ted’s inappropriate behaviors.  I am up to my aching temples with sticker charts, token systems, behavioral plans and therapy appointments.  On my better days, I redirect, encourage and incentivize.  On my worst days, I yell, threaten and bribe.

What can I tell you?  I have a kid on the Spectrum and a spirited three-year-old.  Shit’s going to happen.

Most people who raise an eyebrow back down the moment I shoot them a return look.  Others act helpful – “Oh, don’t touch that, Sweetie!” – as if I’m a hapless, overwhelmed mother who doesn’t know how to discipline her children (which I am, but still capable of telling Ted to drop the salad tongs.).

Perhaps it’s this sense of feeling a little persecuted and put down that primed my reaction on the morning in question.  Or maybe, after a very long school break, a bout of family illness, ongoing fights on multiple fronts to get my son services and the daily stress of raising a child on the Spectrum, I was just tired, fed up and more than ready to throw something.

It happened at the oatmeal bar.  I was helping Ted scoop oatmeal into his bowl.  A tall man with a mustache barged in next to us, a clear violation of Whole Foods etiquette.  Ted hovered excitedly over the toppings while the man stood too close, waiting impatiently for his turn.  Ted’s movements, as usual, were excitable but in no way threatening or destructive.

The man spoke directly to Ted.  “Slow down!” he scolded.

I’ve never liked men with mustaches, but men who use their size and gender to intimidate others are reprehensible to me.  And no one, of any size, gender or facial hair preference, speaks to my child in that tone.

“Don’t talk to my child like that,” I said.

“Stick it in your ear, Ma’am,” he replied.

“Excuse me?”

He stuck his face a few inches from mine and repeated himself slowly.  “Stick – It – In – Your – Ear – Ma’am.”

There are a dozen reasons why I should have just walked away.  The man could have been armed and dangerous for all I knew.  At the very least, he was in a rotten mood.  My kids were watching.  In the back of my mind I heard them reciting my own mantra back to me: Calm voices!  Safe hands!  This was my chance to teach them about mature conflict management, a chance I squandered.

His lidless, to-go bowl of oatmeal stood on the edge of the bar.  With a gentle nudge, I knocked it onto the floor.

“Sorry,” I said.  “I seem to have knocked over your oatmeal.”

“Security!” the man yelled.  “I’ve been assaulted!”  He started to stomp off but stopped suddenly.  He reached into my grocery cart and pulled out our large, to-go box of scrambled eggs and hurled it across the floor.

Uh oh.  This has gotten out of hand, I thought.  Definitely time to walk away. 

I stopped by the cashier and gave her a slightly abridged version of events (“That man just threw eggs all over the floor.”)  I served us up a second breakfast, paid for it and we sat and ate in the café.  The man sat a few tables away and we didn’t dare look at each other.  Neither of us was asked to leave although we both deserve to be barred from the store.

What’s the take home lesson for me?  Chill out!  Go to therapy or take up kickboxing, but find a more appropriate way to deal with anger.  For heaven’s sake, what kind of mother throws oatmeal?   And also: Go easy on yourself, get more breaks and forgive yourself for acting like a three-year-old.

The take home lesson for everyone else:  Give my son some space to be himself.  He’s different.  He’s loud and annoying.  He knocks over the occasional display of loofahs and incense sticks.  But take my word for it: he is trying his best!  As am I.  Most importantly, if you have a problem with his behavior, talk to me about it – NOT HIM.

Otherwise, be warned, your oatmeal might wind up on the floor.

Our Slim-Fast Anniversary: How Raising A Child On The Spectrum Has Challenged Our Marriage

This month Paul and I will celebrate our twentieth wedding anniversary.

Twenty years ago I wasn’t concerned with the latest Autism research, inclusive education or fighting for disability rights.  I was worried about my weight.  My wedding dress fit perfectly except for revealing an ugly bulge of belly fat.  Three weeks out from W-Day I started an emergency Slim-Fast diet, replacing meals with 8oz of pink, strawberry-flavored froth.

By some twist of logic, I persuaded Paul to diet with me.   It wasn’t fair, I protested, that brides have to starve themselves into Barbie-sized dresses while grooms get to marry in the relative comfort of suit pants.  I railed against unrealistic images of feminine beauty, sexual double standards and the objectification of women until he said, “Alright.  I’ll do it.”

Every night for three weeks we power-walked around our Chicago neighborhood, returning to our battered, shoebox apartment.  We’d roll out the TV cart, crack open two cans of Slim-Fast and watch countless episodes of Mad About You.  We couldn’t wait to be married, simply so we could go back to eating solid food.

Fourteen years later, we had Ted.  It was a difficult conception and a near-catastrophic birth followed by several years of anxiety about Ted’s development.  By age two it was evident to me that Ted had challenges and required more help than we alone could give him.  Paul disagreed.

For several months we stayed up most nights in bed arguing.  We fought over the inconceivable question of whether or not there was something “wrong” with our child.  I maintained that Ted’s behavior was out-of-the-ordinary and we needed to intervene now.  I cited as evidence the daily “incident slips” arriving home from preschool, the preschool’s suggestion that we get Ted evaluated and my own observations of Ted acting differently than his peers.

Paul agreed that Ted could be intense and difficult to manage but not exceptionally so.  Lots of boys act up, he insisted.  He wanted to hold off on any kind of evaluation to see if Ted’s issues would resolve themselves over time.  He didn’t want some doctor mislabeling or meddling with his son.  He accused me of over-reacting; I accused him of denial.

The distance between us grew.  In the past, we’d always been on the same team.  Whether partaking in a ridiculous diet, facing a family death or undergoing infertility treatments, we’d endured our struggles together.  Now, when the stakes were highest, we each felt abandoned by the other.

The turning point came late one night after a prolonged argument.  We each lay staring up at the ceiling in a silent stalemate.  We had reached that devastating precipice in a marriage where there is nothing left to say and the future feels uncertain.

I turned and looked at Paul.  It was as though I was seeing him for the first time in months.  His eyes were red and swollen and his forehead deeply creased.  His face devastated me.  I saw in it a mirror of the worry and anguish I thought I carried alone.  He clearly felt it too.  Seeing him so vulnerable stripped me of my own defenses.  I began to cry.

“I’m so scared,” I said.  “I love him so much.  I don’t know what to do.”

“Me too,” he said.

We reached out and held each other tightly.

I can’t say we’ve agreed on everything since.  When we do disagree, it’s this place we try to return to: a place of joint tenderness and vulnerability, of being held together by our fears but united in our love for Ted.  Neither of us would ever accuse the other of not loving our son.  We both want what’s best for him even when we disagree on what that is.

I never lost my belly fat.  Two kids and twenty years have only added more bulges.  Still, I might purchase some Slim-Fast for our twentieth anniversary.  We can split a can, watch reruns of Mad About You and remind ourselves of all that we share.