Love in the Land of Autism

After a long, hot day of playing outside, I sit my son on the couch.  He gets upset, not quite ready to settle down and certainly not ready to be confined to a chair.  But I kneel before him and carefully take his Teenage Mutant Ninja Turtle sneakers off, the only ones at the store with enough room for his wide, tall feet.  He smiles.  I peel his socks off, and gently blow on his sweaty feet.  He giggles, a sound of genuine happiness escaping his throat.  I gently pick the sock lint from between his toes, and give his arches little kisses.  At this point, we're both laughing and our eyes meet briefly and in that moment, the whole world shines.

Love is a feeling, an action, a reaction.  The word itself doesn't even begin to describe the deep emotion involved in love, the effect it has on every part of our being.  That is why I do not share the sentiment I see so often repeated in support groups for mothers of children with autism, the desire to not only tell our children that we love them and have them understand it, but to have them say it back to us.

My son says "I love you" every day.  He tells me he loves me first thing in the morning when he runs into my room and throws himself on top of me, like the time we spent away from each other over the night was far too long.  He burrows into my chest, but raises his head to look at my face often to make sure it's true, that we're finally together again after long hours asleep.  Then, he slowly reaches to the night stand and grabs my glasses gently and hands them to me.  When I smile and accept them, he has this look of pride and accomplishment, like he prepared me for the whole day ahead and helped me become the me I'm supposed to be.  In a way, he's right.

I tell him I love him every day, too.  I tell him I love him when I rush to him in his time of tantrum and swiftly pick him up, kissing away his tears and petting his warm, thick hair.  I tell him I love him when I hold him close and rock him gently in his chair and sing his favorite songs.  I tell him I love him when I make him banana pancakes with maple syrup for breakfast, when I'm gently spoon feeding him lunch, when I tickle his arm pits at bath time.  I tell him I love him when we run around the backyard and sit in the sandbox together, or when I put his favorite movie on during a rainy day.  When I blow on his hot, sweaty feet and kiss them even when they're stinky.

The weakest expression of love is to tell it; the most powerful and profound expressions of love are found in the attitudes we have for each other during the mundane and the awesome, the quality of the time we spend together, how we talk to one another, touch one another, and connect with one another.  We don't need to hear it, we just need to experience it.

Whether or not our children have a word for what they feel, they feel it when we show it.  That's what is important.  I feel deeply loved, and I make sure that he reaps all the benefits of the endless supply of love I have for him.  That's enough for me.



Satya is one of the five ethical principles of yoga, or yamas.  In brief, it means truthfulness, denying reality neither to ourselves nor others.  It goes deeper than simply telling the truth, which itself requires an understanding of what exactly truth is, but it also means seeing things for what that they are without the lens clouded by our own experiences and opinions.

Our expression of satya must be in line with the yama of ahimsa, or non-violence.  Though the truth itself might seem overwhelming, scary, depressing, cruel or violent, our sharing of truth must always be done with utmost compassion and understanding.  Our words must reflect reality, but possess the caring human element that reality often lacks.  Satya must serve a higher purpose, it must serve others and ourselves.

So, what is truth?  I think of truth as the baseline of reality, the flat line from which random spikes and valleys occur like a heartbeat on a monitor.  It is the unaffected stillness that runs through our lives and the world around us when untouched by opinion, untouched by judgment.  For example, a truth of life is that it ends.  Death itself is neither good nor bad, neither depressing nor joyful.  It is through our own experience of the event of death that it is given these adjectives.

This brings me to the topic of the Little White Lie.  Is it acceptable?  Perhaps.  Little White Lies as they are called are "lies" told for the benefit of others.  Sometimes, they might not be lies at all but simply the humble concession of opinion.  For example, the answer to the question "Does this outfit look bad?" can be "No" when you feel that indeed it does.  Satya here is maintained, because we have to realize that our opinions are not the truth, and if our opinion could hurt someone's feelings or insult them it would be against the philosophy of ahimsa.  The outfit doesn't actually look bad; it is just an outfit, and as such is neither good nor bad.

I was thinking about truth today, which is why I decided to write about it.  I had a bad day, but if someone asked me how my day was, I would have felt perfectly comfortable telling them it was great.

I took the kids to the library today, where my son was engaged in running full force around the children's area, smacking the aquarium, throwing tantrums, drawing all eyes on me while my daughter was doing who knows what because I couldn't keep an eye on both of them.  Deciding the library wasn't the right place for us today, I took them to the park where these bursts of energy and noise are not only better received, but are fully expected.

While at the park, I had to chase two toddlers running in various directions over potentially dangerous tall playground equipment that was a little too advanced for their ages.  I had to stop several attempts to run into the parking lot, to run in front of the kids swinging.  Then my daughter had to use the bathroom, which involved gathering them both up despite a horrific tantrum from a little boy terrified of the dark public restroom.  As I was covering the seat with toilet paper, I turned around to find two kids with their hands in a puddle on the public restroom floor.  The sink was too high to wash their hands, so I had to rinse soap off their hands by cupping water and splashing it on them because I couldn't complete the balancing act that would have been required to hold a child on a bent knee while trying to get the motion-sensitive water to turn on, reach the child over and help rinse his or her hands before the water shut itself off.  They enjoyed it; I didn't.

Finally, when it came time to leave the park I had to contend with tears from both children.  Mothers and caretakers at the park in a well-to-do neighborhood who had their noses otherwise buried in their cell phones turned their perfectly coiffed heads to watch us leave, my threenager pulling me back and screaming that she didn't want to go, my other toddler balanced on my hip trying to nosedive into the wood chips that lined the playground.

When we made it home after stopping at the grocery store, I found that my rescue cat who still maintained some bad habits from living in a cat hoarding situation had managed to get rotten raw chicken out of the garbage can and spread its odorous juices all over my kitchen floor.

My experience with today, the impatience, the exasperation, the exhaustion, the feeling of just wanting to throw my hands into the air and announce my surrender, were just peaks and valleys on the steady base line of my reality.

The reality is that we went to the library, we went to the park.  We went to the grocery store where we were able to comfortably afford fresh, nutritious food for dinner.  There is still a roof over our head, a kitchen to cook in, cats lounging comfortably in the windows.  So the day was a little difficult, a little messy, a little noisy.  I am deeply loved, and I deeply love.

Saying that my day was great really isn't a lie, is it?


...The Big Appointment.

"Ready, set..." I said with anticipation.

"GAH!" Gus screamed.  With his hands firmly gripped in our own, my husband and I laughed and lifted Gus through the air, swinging him forward and plopping his two feet back onto the ground.  He shuffled forward in his Teenage Mutant Ninja Turtle sneakers and looked up at me with a dimpled grin.  "Ready, set..." I said again.

We walked across the whole parking lot in this manner as we headed to the Cleveland Clinic Center for Autism, a low building that appeared stark white against the threatening gray sky.

As we sat in the waiting room for the final appointment in Gus' autism screening, we watched him run in circles around the line of chairs, giggling and grunting with a car in each hand.  He stopped once in a while to throw himself dramatically on the ground, or to squat before the doors, or to run his car over the edge of a chair.  I watched the clock tick off the seconds, the minutes.  That skinny black hand seemed to tick in time with the light anxiety in my belly.

Finally, the doctor came to get us.  In a small room with some toys for Gus, we were handed a stack of papers detailing the various evaluations that he went through.  She discussed with us very kindly the methodologies, the observations, the details.

She used words like, "challenges," and "difficulties," even the word "weakness" a few times.  She was describing my son - his personality, his habits, his attitude.  Everything that makes that precious boy who he is, described as a "challenge" and a "difficulty" and a "weakness."  I thought I had prepared myself, but you can never really prepare yourself - not to hear the clinical interpretation of your child's being.  Tears welled in my eyes and she handed me a tissue. 

After sitting and listening, and reading through a packet, I finally asked, "So, what is the official diagnosis?"

She nodded slowly, "Autism."  Then she went on to describe what everyone has come to know as the spectrum.  I kind of started to tune out a little bit.  At this point, I knew that she had said he scored below certain thresholds, that his development wasn't where it should be.  I'm sure she had said "autistic" several times, and while I expected it, it didn't quite register.

The doctor left the room for a few moments, and Gus came up to me.  Snot was dripping from his face and I tenderly wiped it away as I drew his face close to mine and gave him a big sloppy kiss.  His dimples and his smile were the same they were an hour before; a day before.

When the doctor returned, she had a very big packet of information for us.  She discussed our therapeutic options, education, financial aid.  More things to digest than I could swallow at once.  As we left, we scheduled a second appointment to follow up and make sure we're able to get the help we need.

I broke down in the car.  I bawled as we drove east on Shaker.  No, you really can't prepare yourself even when you instinctively know what someone is going to tell you.  It's not easy to hear, not from a professional.  It is so final now, so real.

It started to rain as we drove home.  When we got there, Evelyn rushed up to me as she always does when I cry and immediately asked me what was wrong.  "Nothing, baby," I said as we embraced.  "Nothing."

And really, nothing is wrong.  Life will go on as it always has, only it will probably be busier from here on out.  He's still the same Gus, we're still the same family.  He's still my little boy, laying on the floor pushing his Matchbox cars back and forth, the same boy who smiles this impossibly big smile when I walk through the door.  The same boy who presses his soft little lips against my neck as we rock to sleep.

A few days later, today, I'm comfortable and I'm ready to tackle the hurdles that may stand before us.  I'm ready to be his biggest advocate, his biggest supporter.  I'm more in love with him today than ever before, but that's nothing new either - I love him more every day than I did the day before.  In other words, I'm ready to keep being his mom.  Autism won't define our family, and it won't define him.  


The Night Before...

Tomorrow has the potential to be a big day for our family.  That thought hasn't been lost on me today, and it feels like there is a giant timer over my head, ticking away the seconds until our appointment with the developmental pediatrician.  It is our last appointment in a series of three; the two prior appointments were with a psychologist, a neurologist, and who I am assuming were therapists though they never actually introduced themselves by their distinct titles.  The wheels have been spinning for a while, and they might finally rest for a moment tomorrow.

I took the first inning of our bedtime routine tonight, rocking my son for an hour.  He fell asleep quickly, but twitches rattling through his little limbs told me his sleep was very shallow and the likelihood of transferring him to his crib successfully was low.  I tried several times, and each time he woke with a start and a cry.

It's my husband's turn now, and from here in the living room, I can hear the rocking chair above me moving slowly back and forth.  My husband hates to rock, says the motion makes him seasick.  But his efforts allow me to relax alone in silence until I step in as the closer, fresh and prepared to battle those last few innings when the end of the game is in sight.  Last night, the game went on until nearly 11:30 p.m.

It's easy to think that your child is perfectly normal when his version of normal is all you know.  I still think about some of the questions they asked me at the previous two appointments and how they apply to my son and to other children.  I try to see our answers on paper, try to look at all four people we have met with and imagine them going over their findings together.  What they are saying, what they are thinking, on what they may agree or disagree.  Then they present their findings to the developmental pediatrician, and she may diagnose my son sight unseen.  I was even told I didn't need to bring him to this last appointment where we finally meet her to discuss everything, but he'll be coming with us.  Absolutely he will be coming with us.

I have my expectations, but on the flip side, I have no idea what to really expect.  I know that any label stamped on him will only be secondary to his primary labels:  August James, Lil' Gus, My Son, My Heart, My Breath.  I only hope that whatever we hear tomorrow is just a formality, a little hurdle to jump on the road to getting my son whatever help he needs to maximize his potential.

The seconds tick away above my head, and I'm sitting in my living room alone in silence, waiting them out.


I find that the happier I am, the less I have to write about.  I'm writing a beautiful life not in little words, but in breaths; not in front of a computer late at night but in the fresh air under the mid-afternoon sun, with my children and their laughter and the love we share.  Of course I still feel compelled to write, even when I have nothing much to say.  This is one of those "nothing much to say" posts.

I decided to turn the extra bedroom into a play room for the kids, though I don't know why these ideas for inside activities come to me on beautiful days.  No one wants to spend the whole day inside rearranging, so of course we didn't.  But I did get started, and hopefully that will be motivation enough to finish it in small spurts throughout the rest of the week.

The space was once our bedroom, but it's just a mostly empty space now after my husband moved his bedroom to the attic.  HIS bedroom, because we haven't had an "our bedroom" for a long time.  I'm sort of a nomad in my own home, sleeping wherever I'm needed - mostly in Evie's room because she still can't sleep through the night without me.  I was going to turn the space into my own place, finally my own place in my own home.  But the whole house is mine, really.  It's painted in colors I picked, decorated with knickknacks of my choosing, my books on the shelves, my cats wandering around.

So, I'm turning this plum-colored room into a play area hopefully before the end of this week.  We already picked up some cute kids' rugs - one is the solar system and the other is a map of the continents.  I've moved the play kitchen that cluttered up my daughter's room into the space already.

The big task, the worst task, is the fact that the room is full of laundry.  Clean laundry that I never got around to folding or putting anywhere.  I just kinda tucked in that room and was like "I'll get to it when I get to it."  Then I tucked some more in.  Then I went in and picked out an outfit.  Then more clothes got piled in.  It's sort of a living nightmare, as laundry is the worst task ever.

But it'll get done.  Eventually.  The days are too pretty to sit inside folding clothes.