One morning this week, Zoe walked in my bathroom (where I was getting physically and mentally “dressed” for the day) and said, “Mom, you’re the only one who loves me.”

I blinked a few times, put down whatever I was holding in my hand and turned to look at her.  ”I love you more than you can imagine, Honey, but no, I am not the only one who loves you.”

“Yes, you are.”

“What about Daddy?”

She considered this.  ”Okay, so you and Daddy are the only ones who love me.”

“What about Grandma and Papa?”

She started twisting her torso, one shoe pointed out in front of her.  She sighed.  ”Okay, so you, Daddy, Grandma, and Papa are the only ones who love me.”

“No.”

“Yes.”

“What about Adam and Riley?”

“Okay, so you, Daddy, Grandma, Papa, Riley, and Adam are the only ones who love me.”

“What about Opa?”

She sighed.  ”Okay.  Opa too, but you guys are the only ones.”

“What about Uncle Scott and Aunt Monica?”

A smile tugged at the corners of her mouth, but she looked down, still twisting, another sigh escaping her lips.  ”Okay, but it just feels like you’re the only one who loves me.”

“Why?”

“I don’t know.  It just does.”

I scooped her up in my arms and sat down on the side of the bath tub.   It’s amazing how many big talks happen in my bathroom.  I’m beginning to think I should move my computer in there and just make it my office.

“You know, I feel that way sometimes, too.  But I need to tell you something.  I’m not even a quarter of the way through the list of people who love you.  You have more love in your life than you can imagine.  You will be loved by people you don’t even know love you.  Whenever you feel like there aren’t very many people who love you, remember.  Think hard.  Make a list.  That simply isn’t true.  And, I’ll tell you  a secret.”

At this, she giggled and leaned in to me.  Zoe loves  secrets.  I pushed back her hair and whispered in her ear: The more love you give, the more love you’ll have.

As Zoe left the room, I thought, “How early does that have to start?”  She’s only 5, and she already wonders if she’s significant.

At least every other week, one or more of my amazing friends—all beautiful, passionate, fun and gifted women–will admit to me that she feels alone, unloved (or at least not loved by many), and insignificant. 

The worst lie I have ever believed is that I don’t matter to anyone else, and that whatever I’m facing, I’m facing it alone.   Ella  Wheeler Wilcox began her late-19th century poem Solitude with the words, “Laugh and the world laughs with you, weep and you weep alone.”  The funny thing is, she felt inspired to write those lines after she spent an entire train ride sharing grief with a complete stranger.  Having absorbed so much of her new aquaintance’s grief and carried it herself that long way, she couldn’t see that for this weeping woman, she was the someone else.  Indeed, the woman hadn’t wept alone.  She’d wept with Ella Wheeler Wilcox sitting by consoling her!

For every “nobody loves me” conversation I’ve had with Zoe, I’ve had three more of my own with my mom.  Even as an adult, there have been times when I’ve said, “Mom, I just feel so alone.  Like I just don’t matter to anyone else.”  Fortunately for me, Mom has never met these comments with any cooing and consoling.  I’ll never forget the first time she shocked me out of my self-pitying reverie with a sharp, “Now that is just ridiculous.”  I blinked, thinking, Did she just say ridiculous?  Before I could wonder more, she said, “You’ve got lots and lots of people who love you.  Then she listed and listed and listed and listed and listed until I saw what a fool I had been for believing the lie.  

Have you ever noticed that single predators in the wild rarely attack an entire herd?  They stalk the herd, waiting for one to get alienated from the group.  It’s the one struggling to keep up, the one left alone, that gets attacked.  Whenever I believe that I am truly alone and no one cares, that’s when I begin to wonder if I can survive.

I’ll let you in on a little secret:  For years, I hated the fact that I was always the youngest person at every table.  I have always been an “old soul,” and for most of my life, my friends have been older than I am (though these days I find that I have an equal number who are my age and younger too:)).  I’ve always seen a clear difference between the age of my body and the age of my experience and ideas, and I’ve never been uncomfortable having friends who are physically much older than I am.  In fact, the truth is that I never really think much about chronological age, unless a friend or family member makes note of it.  For as long as I can remember, other people have made an issue of my youth.  I’ll be caught up in laughter, thinking about how much I am enjoying the group I am with, and then someone will have to say something like, “What would you know about that?  You’re still a baby.”  Those words have always felt like a push away, an invisible hand that strikes out and separates me.  The worst is when the issue is pressed still further.  ”What were you doing in 1982?  You were probably still in diapers.”  No matter what I say in these conversations (”No, no.  I was actually in elementary school…”), there are rejoinders that seem to push me farther and farther away.  Suddenly, I feel alienated and insignificant, as though the strength of who I am is not enough to sustain my place in the group.  I hear the whispered lie, You really don’t belong here.  You really don’t matter.

For a long time, I believed the lie when I heard it.  For days, I wondered if my friends really found value in our friendships.  I carried on silent conversations with them.  Do you realize that making an issue out of the age of my body is like deciding how relevant I am to you on the basis of the age of the car I drive?  ”Oh, what do you know about love?  Your car is brand new.”  My body is nothing more than a vehicle in which my soul lives, laughs, loves…”

The point is that for years, this was the thing that alienated me.  Of course, everybody has at least one of those.  The trigger for the lie.  The thing that is said or not said that makes you feel alone and insignificant.  I always feel sorry for preacher’s wives because they are alienated on the basis of their husband’s profession.  More than once I’ve been in a laughing group of women and someone has said, “Uh oh, we’d better not talk about that, the preacher’s wife is listening.”  Suddenly she feels the invisible hand, pushing her back from the group.  It’s an innocent gesture, one I don’t think any of us usually think about unless we’re the one that feels the shove.    Sadly enough, most of us don’t ever confess the thing that sets us apart, so our alienators are innocent, never knowing that they have pushed us away.

For a lot of years, autism alienated me from other moms.  It still does sometimes, but these are usually young moms who don’t know that the secret to motherhood isn’t just spending quality time with your nearly-perfect baby who hasn’t gotten old enough yet to need any discipline or guidance.  One afternoon this week, we were at the pool for some sun and “decompressing” before the evening chaos.  I don’t know why (because he can’t really tell me), but Adam was in a very grumpy mood.  In general, Adam is a pretty steady kid (which is amazing given all of his challenges), but like the rest of us, sometimes he’s just grumpy.  The problem is that grumpy for Adam comes out differently than grumpy for a typically verbal 7-year-old.  Adam grouses and complains and sounds like an old man with an attitude.  Over the years, I’ve learned the difference between this grumpy chatter and disrespectfulness.  The grumpy chatter I respond to (”I know, you’re having a tough day.”) but then ignore.  This particular pool day, a new mom was bobbing around with her baby (who looked to be about 9 months old).  She sang to him, smiled at him, stared adoringly into his too-young-to-drive-her-nuts baby blues.  At one point, they bobbed right in front of Adam, who had started having a little fun splashing the water into his own face (I know, but whatever floats his boat:)).  Adam splashed baby-angel.  The mother frowned significantly at Adam (which means absolutely nothing to Adam), and whirled “baby-a” a little further away.  I got Adam’s attention and said, “No splashing people.”  I think it was an accident for Adam, but I wanted him to be aware that the mom and her baby were close by.  I gestured toward them.  Normally, Adam would have accepted this without much comment and probably just moved away from the mom and her baby.  Grumpy-Adam complained in his old man “nobody every lets me do what I want” voice.  The mother frowned again, raised an eyebrow at Adam, shook her head slightly at me (never making eye contact) and asked baby-a, “Are you ready to go home, honey?”

There was a time when this exchange really would’ve bothered me.  I’d have heard the old lies: You are alone.  No one understands.  She thinks you’re a horrible mom. In the past, there were situations like this one in which I actually went over and apologized, explaining my children’s challenges.  Not this time.  I guess this time, I recognized that mom.  I used to be her.  I used to think that if a kid was acting inappropriately, somebody wasn’t doing something right.  I don’t resent those moms anymore.  More than that though, I have so many friends these days who do understand.  I have friends with children who have ASD, I read books and blogs and listen to podcasts composed by parents and individuals living with ASD, and it’s impossible for me to believe that I am alone or that my situation is unique.  

The lies have been exposed.

I think because I’m no longer usually the youngest person at the table, I don’t often hear the you are just so young comments anymore.  Maybe it helps that on a few occasions I’ve actually admitted that those comments alienate me.  Maybe it also helps that I’ve turned it into a joke.  ”You know, you’re absolutely right.  One day, I’ll be pushing your wheel chair.”:)  I think more than all that, it just helps that the lies have been exposed.  When I start to believe that I don’t matter, I’ve learned to do exactly what I told Zoe to do.  I remember.  I make lists in my head of all the people who love me—family and friends (the truest friends…the ones who’d sit in the ashes with me) old and new.  It becomes impossible for me to believe that I am alone and insignificant, on any basis.

I’ve learned the freedom found in exposing the lie.  I’m telling you, do not believe it.  That thing that makes us say, “Nobody loves me” has no power over us if we refuse to believe the lie.  The truth is, there are very few people who really alone, and no one is insignfiicant.  Everyone matters, and not just to one soul, but to many.

I love John Donne’s Meditation XVII:

…all mankind is of one author and is one volume; when one man dies, one chapter is not torn out of the book, but translated into a better language; and every chapter must be so translated.  God employs several translators; some pieces are translated by age, some by sickness, some by war, some by justice; but God’s hand is in every translation, and his hand shall bind up all the scattered leaves again for that library where every book shall lie open to one another.

No man is an island, entire of itself; every man is a piece of the continent, a part of the main.  If a clod be washed away by the sea, Europe is the less, as well as if promontory were, as well as if a manor of thy friend’s or of thine own were.  Any man’s death diminishes me, because I am involved in mankind…

This is the truth, and this is what I believe.  It’s exactly the message in one of my favorite movies of all time, Lars and the Real Girl:

An entire town supports Lars while he works out his fear, pretending that a plastic doll is his girlfriend.  I can’t even count the number of people who smile at Riley’s crazy hair, let her call them silly names, have one-sided conversations with Adam about numbers, letters, books, and all sorts of other things, and tear up when Adam sings a solo in worship, all because they really do love us and we really are significant to them.

Still, especially in my lowest moments, I hear the lie.  I feel the shove—the invisible push that alienates me from the people who truly love me.  It’s exactly what Elijah did in 1 Kings 19, after the most amazing battle of his ministry.  ”I have had enough,” he said to God.  ”Take my life.  I am no better than my ancestors.  …I have been very zealous for the Lord God Almighty…I’m the only one left.”

I’ll never forget a day when my kids were still really small, and I was completely out of energy.  It was one of those days when I felt like I had absolutely nothing left, a day spent mothering a year-old baby and two extremely sensory autistic preschoolers.  Having shuttled everyone from therapy to therapy and then tried to cram normal household maintenance and even some quality time into our day, I felt overwhelmed and largely unsuccessful.  I fell asleep that night knowing that I would wake up the next day feeling more exhausted still, with yet more work to do.  My emotions seemed to be bubbling and frothing and dangerously near boil-over.

 At breakfast the next morning, I had no sooner sat down to eat when one of the kids spilled their milk all over the floor below the table.  I got up, grabbed a pile of paper towels—some wet, some dry, and knelt down to sop up the mess.  One of the kids was crying, another was trying to walk into the milk, another was asking for more of something, and I just sobbed.  I sopped up the milk with one hand and caught my tears with another.  I prayed.  God, help me.  Please.  I’m all alone, and I don’t think I can do this another day.  Help me, please.

I sat back on my heels and realized that I was crying over spilled milk.  Just as I started laughing at the irony, the phone rang.  It was a friend.  I am sure she heard some quaver in my voice, because she asked me how I was doing.  I sobbed again, but denied her offer of help.  Another friend called just a few minutes later.  She heard me say just a few words and said, “I’m coming over.  I’ll be there in twenty minutes.”  No sooner had I hung up the phone, than another friend called.  She talked to me for a few minutes, hung up, and then showed up on my doorstep about half an hour later, with flowers.  When I opened the door (and the first friend was already there, scrubbing the kitchen floor), she said, “Okay, put me to work.”  

That morning, as I sobbed over a puddle of milk in the kitchen floor, I offered the lie up to God in much the way that Elijah had.  I’m all alone and I just don’t matter.  Help me, please.

In the space of a few hours, I heard the same mighty answer God gave Elijah, too:  Oh no you’re not.  You are not alone.  You are loved.

We do not grow absolutely, chronologically. We grow sometimes in one dimension, and not in another; unevenly. We grow partially. We are relative. We are mature in one realm, childish in another. The past, present, and future mingle and pull us backward, forward, or fix us in the present. We are made up of layers, cells, constellations.  ~Anais Nin

There’s a new act at The Circus.

Riley has assumed a new identity.  On every piece of artwork she creates, every letter of grievances against her sister, and on more than a dozen, neon-pink heart-shaped Post-It notes dotting her desk in her bedroom, she has written, “Marissa, age 7.”  When pressed, she will tell me that her full name is Marissa Chrissy Claires.  As with all of the wonderfully eccentric elements of Riley’s personality, we have met this new thread in our “grand adventure” with big smiles, privately raised eyebrows, and much shared laughter.  After all, Riley thinks this is hilarious.  In fact, she loves to tell other people (randomly) that she is 7 years old.  She tries hard to suppress the smile that tugs at the corners of her mouth and looks off to the side, afraid that if she meets your gaze she will burst with laughter.   I find this especially funny when she chooses to tell someone who barely knows her or is significantly younger than she, because not knowing her true age or understanding her sense of humor, they are completely lost on the joke.

A few days ago, I overheard a conversation the girls were having on the trampoline.

“Riiilleeey, that’s not nice.  Don’t say that to me.”

“I’m not Riley.  I’m Marissa.  And I’m 7 years old.”

“Riley, you’re not 7.  You’re 9.”

“But…but…I’m just saying, Zoe, I’m 7 years old.  That’s what I said.  I said it four times. Because I like 7.  7 years old is my favorite age.  7 years old like Adam.”

Unfortunately for Riley, her body is definitely not 7 years old.  She’s growing up.  I’ve noticed.  In fact, I feel like I am strapped into a terrifying roller coaster ride, and we are at the part where the car we’re in is creaking ever-so-slowly up a huge hill.  The brakes on the train are screeching (that would be me, foot pressed desperately DOWN) and the car is straining, but in the pit of my stomach I know that when we reach the top we’re going to barrel down so fast I’m going to lose my breath in the process.  That, or I’ll just resign myself to the ride, throw my arms above my head, let out a half-crazed scream, and enjoy it.

I’ve been having conversations with Riley which we both call “big girl lessons.”  She gobbles up the attention like cake, but so far, her questions and comments have been few.  She repeats facts with me, reading many for herself, but while the wheels are definitely turning, I don’t think she’s accepted any personal application beyond the things which are visually pretty impossible to deny.  I’ve wondered how much she’s absorbing.

Physical and hormonal changes are difficult for any kid, but they cause a unique anxiety in children with autism, for whom any kind of change is riddled with acute fear.  In her fabulously insightful book Thinking in Pictures, Temple Grandin wrote,

“At puberty, fear became my main emotion.  When the hormones hit, my life revolved around trying to avoid a fear-inducing panic attack (88).  …I started living in a constant state of stage fright, the way you feel before your first big job interview or public speaking engagement.  …the anxiety seized me for no good reason.  My nervous system was constantly under stress.  I was like a frightened animal, and every little thing triggered a fear reaction (111).

In the wonderful book, Girls Growing Up on the Autism Spectrum by Shana Nichols (which I am still reading), I read about a girl with an ASD who handled the changes associated with puberty by insisting that she was a “little girl.”  She refused to wear deodorant or bras, telling her mom that “little girls don’t wear deodorant and bras.”  While she persisted in her denial, her mom pressed on with teaching the basics, and eventually, her daughter asked a question about physiological development.  After that, this young girl absorbed the information her mother offered with rapt interest.

While I haven’t noticed anything in Riley that outwardly looks like acute fear, I’ve seen definite signs that she feels anxiety about being unable to control or understand her own emotions.  With the tiniest indication that things will not be as she expected or desired them to be, she fights back tears and finally concedes, wilting into sobs.  While disappointed tears are certainly not unusual for girls at any age, struggling with the lack of control seems unique to puberty.  Little girls (Zoe Zoe Zoe) use their tears to advantage.  Riley fights a visible battle and then gives up.  When I ask, “What’s wrong?” and she says, “I just…I just…I feel like I miss somebody,” I can feel my own arms clinging to my mom’s waist as my tears soaked her shirt.  I hear my own young voice lamenting, “I don’t know…I’m just SAD.”

It is the human condition to mourn the things over which we have no control and often to deny the unexpected thing we see clearly coming on the horizon until we have courage and strength enough to bear it.  This is, after all, what growing is all about.  Still, sometimes I’d just rather not grow (or at least that’s what I’m thinking).  I long for alternate realities or a choose-your-own adventure life.  Oh, to choose a different ending (”If you want to fall into the deep dark hole, turn to page 5o.  If you want things to turn out well, turn to page 77…”  When we were kids, one of my brothers developed a method for reading those books so that he’d know how every single possible choice would turn out.) or, if I’m smart enough, maybe I can find a “soft spot” in the universe and walk through to a different world.  A “do-over,” maybe?

Ever since that Fringe finale aired, I’ve been joking with a few good friends (who appreciate my sense of humor) about my “alternate reality.”  Come on now, how many times (Mom?  Mom.  MOM!  Mommy?  Mommmmmyyyyy. Mom. Mom. MOM.) have you joked about changing your name?

“Who’s mom?  I’m Anastasia.  I’m 25.   My belly has never extended to the point that I look like I swallowed a  watermelon whole, and I have absolutely no idea what my body would look like with stretch marks.  As a matter of fact, what are stretch marks?  Mom?  No idea where she went.  Sorry, gotta go, I’m off to the beach.”

It occurred to me that my daughter is no different than I am when facing changes that I cannot comprehend or control.  Denial is a drug that soothes anxiety to sleep, putting it off for some unknown moment of readiness.  I remember all of the “alternate realities” I created for myself in the early days before Riley’s diagnosis with autism.  I told myself that Riley was just a late talking, very independent child who preferred quiet and solitude to exuberant social situations.  There was nothing wrong with my daughter (Side note:  Now I am certain that there’s nothing wrong with her, but equally certain she has autism.:)).  In the face of what appeared to be a truly insurmountable unknown, I told myself that if I just put forth my best effort, I could make sure that she developed as she should.  I could work away all of the challenges she seemed to face by the sheer force of my Iron Will.

Many times, I still try to convince myself that this is true.  In some vast, barren subconscious wasteland, I reason that if I exert enough control, I can keep all the variables in my life in a comfortably predictable state.  This too is an exhausting, self-defeating notion.  The moment my imperfection rears its ugly head, the illusion is shattered.  What is it that deludes me into thinking that it is weakness to admit to my own lack of sovereignty?  Perhaps it’s the child within.  It’s Marissa, age 7 , holding her but-it-must-be-this-way expectations in her fists.

Virtual and alternate realities…hidden, fantastic worlds…amazing new capabilities to side-step tragedy…this is the stuff of which science fiction and fantasy are made (Interestingly enough, fantasy is currently one of the fastest-growing genres in fiction).  I love to pretend that if I could hold “fate” in the palms of my hands and twist it at will, I’d be safe.  So often, I view my life like a giant chess game:  If I could just strategize 10 moves in advance, I’d win.  This doesn’t seem so silly to me (I’m an intelligent, capable woman, after all:)) until I realize that I have the life-chess Champion, the One who can see every single move that will ever occur, begging me to get out of the chair and  just let Him play the game on my behalf.

So even as I wrap my arms around Riley and press on, asking her to trust God with the days ahead, I know that I don’t always live my own life with that measure of complete surrender.  I understand her fear.  Sometimes, I’m still that little girl standing at the edge of one of life’s cliffs, trying to convince myself I’m not actually standing there.

I suppose that it’s testimony to God’s work in me that I have “my moments.”  In these Victorious moments, I echo Barbara Johnson’s mantra (Whatever, Lord!), reasoning that if a woman who lived through so much pain (the tragic deaths of two sons, a terrible accident that nearly took her husband’s life and left him paralyzed for a very long time, an 11-year estrangement from another son, and lately, a brain tumor) can surrender all of her unknown and unchosen paths to God, perhaps I too can learn to do so.  In truth, it’s essentially the single best thing God has ever allowed me to do for my children.  In my darkest days, when I wondered if Riley and Adam would ever speak (much less move on to have lives and families of their own), God slowly pried my fingers open and helped me release the expectations I held clinched in my little-girl fists.  I have learned, at least in this, to trust that whatever my childen become (and whatever they don’t), it’s all held in Mightier palms than mine, and His ways are always the best.

I’m a work in progress and so is Riley.  It’s just that I’ve stood at a few more cliffs and plunged down a few more hills with my breath caught in my throat.  One thing I have learned along the way is that it helps to open my eyes to the view, raise my arms up in the air, let go a little, and just try to enjoy the experience.

So on Saturday, Riley and I sat in the bathroom floor and I handed her a pair of toenail clippers and several bottles of nail polish.

“You know, I think you’re getting old enough to learn how to do this yourself,” I said.

I sat nearby and painted my own toenails, noting that Riley had chosen a bright, fire-engine red for her own.  I was careful not to interfere with her harmlessly independent opportunity.  When she finished, she had polish all over her slightly uneven nails and here and there on the skin around the nails.  There were smudges and inconsistencies, but she was so excited she could hardly stand still.  She flew down the stairs, plopped down at the breakfast table, and declared to her dad (flushed cheeks and all):

“Dad, I’m almost 10 years old.”

Funny thing: I haven’t seen Marissa this week.

God grant me the ability to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference. ~The Serenity Prayer

Does freedom mean that you are allowed to do whatever you want to do?

Or we could talk about all the limiting influences in your life that actively

work against your freedom.  Your family genetic heritage, your specific

DNA, your metabolic uniqueness, the quantum stuff that is going on at a 

subatomic level where only I am the always-present observer.  Or the 

intrusion of your soul’s sickness that inhibits and binds you, or the 

social influences around you, or the habits that have created synaptic

bonds and pathways in your brain.  And then there’s advertising, propaganda,

and paradigms.  Inside that confluence of multifaceted inhibitors,’ she sighed,

‘what is freedom really?’

Mack just stood there not knowing what to say.

‘Only I can set you free, Mackenzie, but freedom can never be forced.’

‘I don’t understand,’ replied Mack.  ’I don’t even understand what

you just told me.’

She turned back and smiled.  ’I know.  I didn’t tell you so that you

would understand right now.  I told you for later.  At this point,

you don’t even comprehend that freedom is an incremental process.’

Gently reaching out, she took Mack’s hands in hers, flour covered

and all, and looking him straight in the eyes she continued,

‘Mackenzie, the Truth shall set you free and the Truth has

a name; he’s over in the woodshop right now covered in sawdust.

Everything is about him.  And freedom is the process that happens

inside a relationship with him.  Then all that stuff you feel churnin’

around inside will start to work its way out.’

~The Shack by William P. Young~

 

There are days when I’d like to hide my head in the sand.  

When I admit that, I always feel like I need to back-pedal and say that I am blessed beyond measure and know it with my whole heart, that I have been granted more joy than some unfortunate souls will ever taste, that I love my kids and my husband and our life together so much that there aren’t enough words to tell you, and that I would never trade Life at the Circus for all the world.  I am so thankful for the all enormous loves in my life that it would take pages to write it down, and still I wouldn’t be finished.

But there are days when I’d like to hide my head in the sand.  So, here’s the truth:  I am a free spirit.  

It’s true that I live life with a lot of self-discipline, planning, and organization, but this is a requirement in my line of work.  When you are the ringmaster, the lion-tamer, the tight rope walker, a trapeze artist, the woman wearing all the sequins, and the clown driving the little-bitty clown car all at the same time, and there are three main acts happening concentrically with you participating equally in each one, there is little choice but to live within some non-negotiable constraints.  I operate fairly well within the structure I am forced to impose upon myself, but free spirits are prone to rebellion.

It’s rebellion that causes me to turn into a corner and clinch my fists and indulge in a little private GRRRRRR when we’re trying to get our kids settled into bed and Adam cannot find the 500th specific stuffed animal he has selected to pile upon himself and follows me around the house asking me to help him find it; Riley, exhausted and melting down and clinging to me (”But Mom, I just want to be with you all the time…”), is weeping bitter tears about missing her friends and wanting to play outside and could we please plan something (anything…she just loves plans); and Zoe must have the perfect hair ornament and bun twisted on top of her head (even though she’s going to bed—she likes to sleep pretty).  Please note: this occurs at once.  Is it any wonder that I sometimes secretly want to walk to the front door, open it, and just run?  Wasn’t it David who wrote, “OH that I had the wings of a dove!  I would fly away and be at rest-I would flee far away…(Psalm 55, verses 6 and 7).”

Or, dial back just a few hours earlier and I am making supper, signing papers from school, supervising and checking over homework, folding laundry, threatening extra writing assignments (5 things you LOVE about your sister) to silence squabbles, answering 1000 questions (”Mom, how do you spell BOSSY?!”), praying for a friend who has a major burden on her heart, wondering if there is something I can possibly do to help someone else with so much more on her plate than I have on mine (because truly this is what I love to do), wishing I could call one family member or friend a day to catch up (and sometimes trying), and incredibly, though my heart wants to be completely unselfish (or at least the Spirit within is pulling for it), I indulge in a bit of rebellion.  In the midst of trying to be unselfish, I become incredibly self-centered.  OH, I wish I could… is like a snake curling around my joy and squeezing out all the life.  When my selfishness creeps in, Responsibility feels suffocating.  The process of fighting with my own selfishness is exhausting.  My free spirit throws temper tantrums, knocking and beating about in my flesh like an angry animal in a cage.

So, I have my own brand of freedom therapy that gets me through the days when my Responsibilities feel like a cocoon.  I lock myself in the bathroom for a few minutes.  Standing at the sink, I skim through magazines like Coastal Living and Travel and Leisure and imagine that I’m strolling down one of those gorgeous white-sand beaches in a bikini.  Some of you are thinking, A bikini?! and others of you already understand.  My free Spirit longs to shed all the constraints that govern my life, and I wish to be as bare (of life’s STUFF) as I can be.  In those moments, if I could shed my body, I’d do exactly that.   Since I can’t, I want to feel the sun on my shoulders, the breeze dancing on my skin, the water reaching for my feet.  Just me and God…that’s what I long for…and hours to think and pray.  I want to sprint down the beach until my muscles throb and sweat drenches my face (because I am much, much, much more than muscles and skin and bone), jump in the ocean and wash off, and then fall asleep on the beach while my free spirit plays in my dreams.  I want absolutely none of the details of this life standing between me and the best relationship I’ve ever known—the love of a God whose Love is so big He must pour out power on me so that I can begin to understand it.  At the beach, it’s like His face is pressed up against mine and His fingers are thredded through my own.  I feel His power and peace in perfect rhythm, and all the details that push me around, frothing my life into a mad pace like unbidden tormentors, are washed away in the surf.  So, I go there for a few minutes.  Then I breathe deeply, unlock the bathroom door, and get with it.

Last week, I finished reading The Shack.  I love that book.  It’s not that the book provided a deep epiphany for me, but actually more that it articulated a description of the relationship I know with the God I love.  As I sat with Mack as he ate dinner with the Trinity, or worked in the garden with Mack and the Holy Spirit,  or took a walk with Mack and Jesus, I relished the freedom and joy of that phenomenal communion.  The most insightful moment of all (for me) came when Mack and Papa had a conversation about freedom.  I can’t tell you how many times I’ve longed to feel free in those head-in-the-sand moments.  I realized, reading The Shack, that I tend to get a little lost in selfishness and see it all the wrong way.  It’s not that I am confined within my life and occasionally get to break free.  It’s that I am always free and choose constraints (for as long as I reside in this body) for the sake of those I love.  That’s a very different thing.  It’s not that I’ve been thrown into a prison, but that I’ve chosen to take up a cross.  In His awesome and fabulous way, God reminded me that this is exactly what Christ did for me, on a much, much, much larger scale, since He left heaven by choice to be a man and die and live again.  He chose to limit Himself for a time so that one day I could be free indeed.  It’s humbling, you know, to realize that my free spirit tantrums about all the Responsibility that comes with living out the abundance of my blessings.  There are those in this world who are truly imprisoned.  It’s my freedom to choose to limit myself for a while, so that my children can one day also be free.  To live is Christ.

I am reminded well that these desperate cravings for freedom, those head-in-the-sand moments, are one of my greatest blessings of all.  When my free spirit knocks about inside this flesh, it’s just a reminder that heaven is my home, and from time to time, I just feel a little homesick.  To live is Christ, to die is gain.  

Now the Lord is the Spirit, and where the Spirit of the Lord is, there is freedom.  And we, who with unveiled faces all reflect the Lord’s glory, are being transformed into his likeness with ever-increasing glory, which comes from the Lord, who is the Spirit.~2 Corinthians 3: 17, 18  

Now we see but a poor reflection as in a mirror; then we shall see face to face.  Now I know in part, then I shall know fully, even as I am fully known. ~1 Corinthians 13:12

Do you remember what road trips were like growing up?  We used to do things that would now be considered illegal.  I remember the rhythm of my dad’s feet down the steps and thumping against the driveway as he toted me out the front door in my pajamas in the wee hours of the morning.  I remember feeling exhilirated as I thought, This is it.  We’re going on a trip.  Mom and Dad would tuck me into my sleeping bag next to my brothers in the back of our full-sized station wagon (I still remember it’s dirty white paint) and I’d go back to sleep, lulled by the roll of the tires on the road and miles and miles of nothing but trees to look at.  In the early morning, we’d stop at a rest stop and Mom would pull out cereal in Tupperware bowls with lids and we’d sit in that back seat still in our pajamas and munch on Rice Krispies with peanut butter.  Somewhere along the way, at another rest stop, we’d change into our day clothes in the bathroom.  My brothers always brought along a tape recorder and made up exaggerated TV news programs and episodes of “V” as we motored down the interstate.  I did odd things like plot out a style of music to listen to on my headphones for each segment of our journey.  When I was younger, I’d take along a jumbo activity coloring book, ask my dad how many miles we had to go, and count out that many pages to work on, telling him to remind me to turn the page every time we went another mile (It’s funny to me now that I actually expected him to do that and never really seemed to get it when I would ask and he’d say something like, “Oh yea, you probably can turn about 30 pages or so.”

With all the regulations now about seat belts, it’s crazy to think that Kevin remembers riding perched in the middle of the front seat, right between his mom and dad, with a full view of the road as it opened out beneath them.

As with most things at the Circus, it’s taken us a while to find our “road trip rhythm.”  Once, we tried leaving for a trip in the wee hours of the morning.  My nostalgia melted the minute we discovered that there is no way to secure a three-year-old in a five-point harness without waking her up completely.  What’s more, when we walked in the bathroom at the rest stop to change clothes, Riley got spooked by the automatic hand dryers and screamed the entire time.  It’s a wonder no one called the police, because I know how it looked to them.  I walked out of that bathroom with a very tall, hysterical three-year old slung over my shoulder, a grocery bag stuffed with her pajamas in one hand, and I was in a hurry. 

Things are a little different now that the kids are older and more verbal and I don’t have to go everywhere with a thick diaper bag slung over my shoulder.  The kids have found their own unique ways to entertain themselves, as my brothers and I did years ago.  At one point during our track out travels, Kevin nudged me and gestured toward the back seats.  ”Look at them.  There’s a blog in this, for sure.”

I had been reading or studying or writing, and fully absorbed, I hadn’t paid great attention to what the kids were doing.  I turned my attention to them and chuckled.

From the very back seat, I heard Zoe involved in some elaborate drama with her stuffed elephant, Ella.  ”But why did you say that to me? (then, in falsetto) Because, we’re on such a LOOOOONNNNGGGGGG trip, and I’m sleepy.  (regular voice) Well, you shouldn’t talk to me like that.  Now go to sleep.  (falsetto) “But can’t we at least stop and find some new shoes for me?  I really need some new shoes…”

Adam was looking out his window intently. having discovered the joy of all those license plates with all those numbers and letters passing quickly beside him.  He had created his own game out of watching them and carefully called out the last three characters on every plate he saw.  ”five-nine-six…’y'-’y'-four…two-one-eight.” Adam could occupy himself for hours with all those delicious combinations.  I once heard an adult man with autism say (when asked on an interview about what he thought was the best thing about autism), “Well, I can appreciate really cool sensory information that few people who are not on the spectrum seem to even notice.  Like, a fan spinning.  That’s the coolest thing, and I can really appreciate that.”  Case in point:  No one (well, at least no one off the Spectrum) can appreciate license plates like my son.

Then there was Riley.  She sat playing with her Cinderella doll, Riley-style.  No dramatic dialogues.  No cuddling or chiding.  Just giggles, and crazy hair.  Baby Cinderella has a whole new look.

 So, you will understand when I say that in our usual off-beat, outside-of-the-box-kind of way, I see this quotation in a whole new light: 

“Remember that happiness is a way of travel—not a destination.”

Nine years ago today, they placed her in my arms, and I said, “She’s beautiful.”  She was.  She is.  Gorgeous.  Absolutely stunning.

 

 

4.26.00...all 5lbs 10oz of her

 

 

Right from the beginning, Riley had (as her Oma always said) perfect little “rose bud” lips and the most gorgeous skin I’ve ever seen.  She was almost completely bald except for a soft layer of peachy-blonde fuzz all over the top of her head.  We weren’t quite ready for Riley—certainly not for her immediate arrival (she was born at 38 weeks, and determined not to be an “over anxious first-time mom, I had not even packed my bag for the hospital) and definitely not for the “grand adventure” she would begin in our lives.

 

Notice the size comparison between Riley and Kevin's hand...

 

 

I don’t really think any of us are really ever “ready” for kids though.  How could you be?  In our early days with babies, Kevin said more than once (always wearing a smile) that he thought those who were already parents (and certainly the grandparents-to-be) had deliberately zipped their lips and failed to tell us things like, “Spit up will soon be your new signature fragrance,” and “Potty training will be one of the grossest experiences of your life,” and “Say goodbye to spontaneity,” and “Remember all that stuff you used to say your child would never do or you’d never do as a parent?  Yep.  You’re getting ready to see and do all of it.”  Having crossed over to the “other side” nine years ago, we now know that Kevin was right.  The truth is, we all sickly want to stand around sharing amused glances as the next generation figures out that the streets on this educational program are made of hard concrete instead of astroturf, and that being here feels more like jumping into basic training on the Biggest Loser—you sweat, cry, scream, say “I can’t do this,” fall into an exhausted heap, and then discover that it’s the best thing you’ve ever done, it’s the brightest most amazing adventure of your life, the adrenaline is addictive, and you’re a much better version of you than you’d ever have been otherwise.  

I’ll never forget that first day with Riley.  Kevin stood holding her, looking out the giant window in our hospital room, tears rolling down his cheeks and making his shoulders shake.  A nurse came in the room as I was watching them together and leaned toward me.  ”Are those happy tears or sad tears?”

“Happy tears.  Definitely happy tears.”

That first night, when our newborn baby girl cried and cried in her plastic hospital bassinet, Kevin picked her up, swaddled her tight and tucked her into the crook of his arm.  They slept together on the uncomfortable cot next to my bed, peaceful and quiet for the rest of the night.  Riley has been “Daddy’s girl” ever since.

By the time Riley was two, she had a head full of tight blonde curls, a beautiful smile, lots of frustration, and very little speech.  Twelve months earlier, she’d repeated every word we spoke to her.  I even tried long, strange words like platypus, and they rolled off her fat tongue like silk.  At fifteen months, all the repeating ceased, and Riley’s frustration mounted.  Our friends knew she was autistic before we did, or at least, before we could face that truth.  Afraid to tell me what she was thinking, one friend passed an article about autism to another and asked her if it sounded like my daughter.  I started visiting book stores, looking for answers.  When I stood in front of shelves of parenting books, the word “autism” seemed to glow nastily at me from all the spines in front of me that bore it.  Deep down I knew, but I didn’t want to know.  At that point, the sum total of my knowledge of autism came from what I’d seen on the movie Rain Man.  Somehow I couldn’t make the connection between my daughter and Dustin Hoffman’s character in that film.  Meanwhile at home, Riley lined all of her toys up in rows and seemed unable to play with them.  She wandered preschool and Bible school classrooms and seemed not to understand and unable to make natural connections with other children.  She woke up at 3 am almost every night, flapped her hands when she was excited, walked on her tip toes, and screamed, holding her hands tightly against her ears when we took her into the auditorium at church and everyone started singing.  One day, in the midst of filling out papers and getting wait-listed to take Riley for an evaluation at the child development center, one of Riley’s Sunday school teachers called me and said, “We don’t know what to do with Riley.  Something’s not right.  Do you know what’s going on with her?  We’re concerned, and we don’t know what to do with Riley.  Can you write down some guidelines for handling her?”

I sighed.  The teacher’s well-meant questions settled on my shoulders like a firm weight.  At a moment when I felt completely confused about my daughter and what I should do to help her, her Sunday school teacher was asking me to write an instruction manual.  I didn’t know what we were going to do, what was “wrong” with Riley, or what even the next day would hold for us, but even then, I knew the answer to her question.

“Just love her,” I said.  ”That’s all you have to do with Riley.  Just love her.”

When Riley’s evaluators finally spoke the word “autism” across the table where Kevin and I sat with our hands folded, I had one immediate question.  ”What will this mean for her life?  Will she ever be able to function on her own or will she always need to live with us?”  It was the short summarized sound of all of my dreams for my baby girl crumbling and landing in pieces in my lap, right there next to my heart, which had also shattered.

“That is entirely up to her,” one of the evaluators said with a generous, sympathetic smile as she nodded in Riley’s direction.  Then, she did the most wonderful thing anyone could’ve done for us in that moment.  She bequeathed a bit of hope.  She told us about Temple Grandin.  She told us about autistic adults with extraordinary lives, and then she admitted that some autistic individuals do need life long support.  I remember thinking, Now faith is being sure of what we hope for and certain of what we do not see.

Not yet knowing a thing about Temple Grandin, I pointed at her name where I’d jotted it on a piece of paper in front of me.  ”If she can do it, my daughter can do it.”

And so it began, and what a phenomenal nine years it has been!  You had to know the beginning to fully appreciate the Riley we know now.  At nine, our girl is a study in extremes.  In her unguarded moments, she wears a seriously sophisticated expression.  I can’t tell you how many photographs we have in which Riley looks like she’s posing in a fashion magazine.  The funny thing is that this happens only when she has no idea that we are watching her, let alone taking her picture.  Riley’s social-self (and oh how social she is these days!) is silly and off-beat.  Even when we’re exhausted, she makes us laugh by saying her prayers in code.  ”Dear Heavenly Father, thank you so much for chair and table.  Keep cotton ball and tooth pick safe.”  When it comes to worship, this child who used to scream through the congregational singing now sings along in loud, confident voice.

For almost a year now, Riley’s been planning her birthday weekend.  A few years ago, Mom and Dad started giving her a shopping spree as a birthday gift.  Riley never forgets what they purchase on this shopping spree.  For the next year, every time she wears one of these outfits, she’ll say, “Grandma and Papa got me this on my shopping spree.  Mom, will Grandma and Papa take me on a shopping spree on my next birthday?”  She knows they will.  She just loves to hear me say “yes.”  So on Friday night, Riley and I stood in the dressing room at Children’s Place and then again at Justice for Girls (Riley’s personal request this year).  I watched her turn around in front of the mirror and then grin and giggle and hide her smile with her hand as she walked out to show her dad and her Papa what she was wearing.  

For at least six months, every single Saturday that Kevin has gone to the men’s breakfast at the church building, Riley has told me, “I want to go on a daughter’s breakfast for my birthday.”  So, yesterday morning, Riley, Mom, Zoe and I left early to get our hair cut and then have a girls’ brunch at the Olde English Tea Room.  I looked across the table and found my baby girl, who once got lost in lining up all of her toys, selecting Sweet Mint tea (and learning how to pour it elegantly all by herself) and Western Quiche, tossing back her golden bob with a giggle.

Saturday afternoon, Riley had us all out at Coldstone Creamery getting ice cream.  When we got home and Kevin asked her to step out in the back yard for a portrait session with Grandma, she muttered to Mom, “Getting my picture taken is NOT my favorite thing to do.”  I remember days when she didn’t have a single word with which to express herself!

On Saturday night, after Riley went to bed (When I kissed her goodnight, she said, “Mom, tomorrow I’m turning nine.”) I filled balloons with helium (to be snuck into her bedroom after she is buckled in the van to go to church).  Mom and I twisted streamers together and hung them from the lights and the curtain rods all over the living room and dining room.  We hung the glittery Happy Birthday signs in anticipation of her big day, the finale to a whole weekend of celebrating her (and oh the things we have to celebrate!).  

After church, we were supposed to go eat lunch at Andy’s, which is exactly where Riley’s been telling us for the last month that she wanted to go for her actual birthday lunch.  I keep thinking about how amazing it is that this child, who once seemed so closed up and frustrated is now such a girlie, glimmering, let’s-go-out-and-have-some-fun kind of girl.  The thing is, Andy’s isn’t a favorite for any of the rest of us, so while we were ultimately willing to concede and go anyway for her sake, we all tried to persuade her to consider other options.  Mom mentioned Italian at Ragazzi’s, but Riley said, “No, I really want to go to Andy’s.”

This morning, Kevin tried.  ”You know, Riley, we had cheeseburgers off the grill for supper last night.  Maybe you might like to eat something a little different for lunch today.”

Riley thought about this.  ”Yea…” Kevin thought he might have done the impossible.  ”I think I would like to have something different today.  I’ll have grilled cheese and fries at Andy’s.”

After church, on the way to the restaurant, I tried one last time.  ”Riley, remember how Ragazzi’s has those really great cheesesticks?”

“Yea…but I really just want to eat at Andy’s.”

Happily, we all conceded.  It is her weekend, after all.  When we pulled into the parking lot at Andy’s, we discovered that our old haunt had closed its doors.  I don’t know if the location has closed permanently or simply moved to a new spot, but the place was definitely empty and locked up.  ”I’m sorry, Riley.  It looks like Andy’s is closed,” Kevin said.

“How about Ragazzi’s?” Riley said, as if it was a brand new idea.  ”I’ll have some cheesesticks.”

This afternoon, it was our pleasure to finish the day with a game of kickball in the backyard.  The only two gifts Riley actually requested this year were a perfect meld of her personality—”dangly” earrings and a soccer ball.  It has been such a beautiful day that it seemed fitting to get out there and teach the kids the game we all played for hours growing up.  We used large yogurt containers filled with dirt as our bases.  Kickball with the Three Ring Circus is a whole new brand of fun.  We laughed till our sides hurt.  Every time someone hit a base with their foot and knocked it over or just nudged it askew, Riley stopped whereever she was (even if she was running for home) and went back to fix it.  After she finally understood that she was supposed to stay on the base she landed on until someone else kicked the ball, the crooked bases drove her insane.  ”Daadddyyyy,” she called once from first base, “that base is knocked over!!”  Kevin naturally relented and let her get off of her base to fix the other one.  Another time, Kevin was running for the kicked ball and had to jump over Riley because he realized too late that she had been so busy straightening her base that she’d not noticed the successful kick.  Meanwhile, Adam played happily with an inflatable toy that Mom and Dad gave him last year, something that resembles a cross between a pool float and a giant hamster wheel.   The idea is that you are supposed to get inside and walk around in it, but mostly, Adam rolls it where he wants it, folds it into a giant inflated mat, and bounces on top of it.  Every so often, he’d roll his toy into the middle of our kickball game, and Kevin would yell, “7th inning stretch!”  I couldn’t have dreamed up a more fitting ending to our weekend-long celebration of Riley than a game of kickball, Mr. Monk style, of course.

When I think about how far Riley has come in nine years, I always end up wiping tears away from my cheeks.  Mom and I love to talk about all the ways we’ve seen God’s glory at work in Riley’s life, and we both get all choked up in the process.  I already see glimpses of a pre-teen emerging in her.  She’ll draw one leg up into her chair, wrap her arms around that leg, and chatter endlessly about a million things, beginning every sentence with “And I was like…”  She loves to make us laugh, loves to hug us, loves to “glam up,” be a girl, and have fun.  Riley’s our sunshine, our rain clouds (like I said…extremes:)), our schedule-Nazi, our party-girl, our reminder that the music is often too loud and bees are scary.  Riley’s our joy.

Happy Birthday, baby girl.  You’re beautiful.

Ahh…it feels good to be back.:)

Every time the kids track out, I get sucked into an enormous funnel cloud.  We fly around in this fog, bumping against each other, flailing about, with toys, projects, suitcases, and load upon load upon load of laundry (mountain ranges—not kidding) knocking against us.  In fact, I imagine it’d be a little hard to see us apart from all of our chaos.  At times, life in the whirlwind is exhilarating (“Did you see that?”  “Mom, how does that work?”  “That was so fun!”).  We never know what amazing thing we’ll fly right into.  Then there are the days (especially at the end), when I want the cloud to just put me down and I’m feeling a bit tired of arms and legs buffeting against my own, and I teach my children new big words like exhausted, deflated, and uninspired.  Just when everything turns into one big blur and I feel stuck in a rapid spin cycle, it’s time to track back in.  I drop the kids off at school that first day back, breathe a sigh that speaks a million things (I love them so much~I’m so glad I got to spend some time with them~I can’t believe how quickly they’re changing~I am absolutely whipped~I am SO GLAD school is back in…), and think how wonderful it is to feel my feet touching the ground again.  Even though I know that this sensation will last roughly six hours until the school bell rings, it feels good.  Really good.

 I don’t think I ever told y’all the exciting ending to Riley’s first basketball season with Upward.  So, now (channeling my inner Paul Harvey), the rest of the story:

 

A few weeks ago, as we were all watching the NCAA basketball tournament (and I was losing miserably in our family bracket contest, though to my credit, I did pick the Tarheels to be the National Champions), Riley got excited and popped up off the couch.  She took center stage, blocking the TV (of course), and declared, “When I do defense, I guard my color like this!”  She crouched into a perfect defensive stance and skittered side to side like a crab.  A crab with a gigantic smile.  “When I’m on offense, I shoot the ball!  I play basketball because I like basketball.”

I couldn’t help but smile, both that a college game on TV would remind Riley of her own experience, and that her enthusiasm would inspire her to do a little impromptu demonstration for us.

 

In Riley’s last few games, we saw yet another amazing transformation in her.  She became a really good defensive player.  Having finally solidly mastered whom she was supposed to guard and how she was meant to guard them, she became as hyper-diligent about defense on the basketball court as she is about emptying trash cans (No full trash can ever goes unnoticed at our house.  When Riley sees a full bag, she instantly whisks it away and replaces it with an empty one.) and managing our schedule.  She stayed on her opponents like glue during those last few games.  Once, I even saw her try to follow the girl she was guarding back to her team bench during a break in the action.  The poor girl started sighing resignedly whenever she saw Riley coming toward her on the court.  As you can see in the video, she unfortunately spent a lot of time guarding her opponent from the back, but hey—at least she had the right idea.:)

 

The same day that Riley’s defense suddenly took flight she scored her first points.  Riley made three baskets that day, and the first time, I saw quite a bit of air between Kevin’s feet and the ground.  Coach Carl seemed just as elated for Riley as we were.  Yep.  Three baskets.  One on our goal.  Two for the other team.  Still, it was fantastic.  Riley’s spirits soared (and ours did too:)).

 

After the game, Coach Carl wondered if all the crazy socks (it was crazy sock competition day) had created some “mojo” for the team.  It was the girls’ first unofficial win (At Upward, there are no scoreboards, but as Coach Carl said, the girls keep score.:))  He suggested that the girls return in crazy socks for their last game, and when he found out how much Riley loves “crazy hair,” he told them to come in crazy hair too, if they wanted.  So, in all the pictures of Riley’s last game, you’ll see that she created yet another piece of “hair art” upon her head for the occasion.  The most wonderful part for me was the look on Riley’s face when she discovered that some of the other girls had done it too.

 At the end of it all, Coach Carl had a special awards ceremony of his own for “his girls,” presenting each one with her own small pink basketball.  He took some time to talk about each team member’s accomplishments, mentioning that he felt that Riley was “what Upward Basketball is all about.”  He told us afterwards that he had wanted to say more about her than he did (and what he said was very encouraging) but knew he’d not have been able to keep his emotions in check.  It feels good to know that she touches the lives of others the way she touches our lives every day.

 Kevin plans to take some photographs of our favorite volunteer basketball coach for his 100 Servants blog, so be sure to check that out. As a matter of fact, while you’re there, check out both of Kevin’s blogs.  They’re awesome.  

In Temple Grandin’s book Thinking in Pictures,” she attributes her success to teachers and special mentors who believed in her and pushed her to excel.  Just the other day, Riley said to me (and it seemed to come out of the blue), “Mom, what’s Coach Carl doing?”

 “I don’t know.  Do you miss Coach Carl?”

 “Yeah.  I miss Coach Carl.”

 Our thanks go to Coach Carl for all of his efforts with and belief in Riley, to her teammates for truly acting as a team and offering her encouragement, and to all the other Upward parents for cheering her on right beside us.  Every time we hear Riley say, “I’m a basketball player.  I play basketball,” we smile at each other, thinking back to that first practice when our little wonder-girl was so lost.  Riley has taught me more than I can ever write about the value of determination and perseverance.  What a blessing she is to us.

My baby boy is 7 years old today, and the best thing of all is that he’s excited about it.  

My Baby Gorilla

7 years old

Last night, Kevin and I decorated with streamers and big Happy Birthday banners all shiny with foil and sparkling letters.  The girls and I sang Happy Birthday to you, Happy Birthday to you…cha cha CHA this morning while I helped Adam get a bath and get dressed.  I pinned a button on his shirt that says It’s my b-day!  and every time we sang his name, he grinned broadly and touched that button.  I’m so glad he’s not the sort to be embarrassed to wear something like that because even though I know he’ll be excited every time a teacher or another kid tells him Happy Birthday today, I know he’s not going to tell them it’s his day.  We practiced answering the How old are you? question (the girls helped:)), and Riley asked if she could help him carry in the dozen cupcakes he’ll be eating at snack time today with his friends at school. Each cupcake has fluffly white icing and a bright colored pick pushed in the top that says Happy Birthday.  Just the thing for a hyperlexic wonder who LOVES letters and words.:)  

When Adam gets home after school and goes upstairs (as he always does) to shed his shoes and put them away, he’ll find helium balloons floating in his room.  Adam loves balloons.  Yesterday, I made him a chocolate cake, but before we dive into that, we’ll eat spaghetti, which has always been Adam’s favorite meal.  I remember that Mom made spaghetti for Adam when we brought him home from the hospital at 2, after we discovered that Adam had diabetes.  He’d been terribly ill, and the doctor warned me that Adam would eat a lot when he got home.  ”When you think about it, he’s basically been starving,” the doctor said.  That night, Adam ate 3 large plates of spaghetti, and I cried.

When Adam was born, his hair rose from his head in a soft black tuft.  His cheeks and thighs were so adorably chunky that I affectionately called him my baby gorilla.   At 4, our rhythm-loving son even showed extreme excitement from time to time by thumping out a beat on his chest with his fists.  At 7, he spends his entire day exercising.  He’s long since lost the soft black tuft and has exchanged the chubby cheeks and thighs for six-pack abs (not kidding) and lean, muscular legs.  Kevin and I have actually joked from time to time that we should write a fitness book from his perspective.  Adam lives in continual motion—running, jumping jumping jumping, spinning, sliding, twisting, dancing.  I don’t think anyone past the age of 25 could actually keep up with him all day, but if we could, nothing would jiggle.:)  He is a trampoline MANIAC and got more excited than you would believe watching Olympic trampoline jumping on TV during the Summer Games.  

I include the clip here in his honor.:)  At every flip and every twist, Adam rose on his tip toes, applauded, and even declared, “Good job!  Well done!”

So agile is our fun-loving son that we have no trouble imagining him doing something just that physical and extreme one day.  He’d be the happiest Olympian alive—giggling and shrieking with delight as he flipped, twisted, and bounced through the air.

I know every mother says this, but I just can’t believe it’s been seven years since that day when Kevin and I left for the hospital in the early morning hours, knowing we’d be welcoming a son into the world that afternoon.  I remember that Riley was particularly angry with Kevin for leaving her with Grandma and Papa (Kevin’s always been her favorite person in the whole world.).  Mom loves to tell the story about how Riley wouldn’t even look at Kevin (much less Adam) when they came to the hospital to meet Adam for the first time.  As I recall, Riley wouldn’t even let us take a picture of Adam and her together when we got home from the hospital.  We have all these pictures of an unaware Riley sitting on the floor or playing with something and my dad’s arms holding Adam suspended in mid-air behind her.  Who’d have known that one day I’d hear her say, “Hey, leave my brother alone” to her dad (big mistake) when he and Adam were having a teaching moment.:)

 Of our three, Adam has always been the most snuggly.  I always chuckle when I hear the stereotype about how autistic individuals do not like to be affectionate or touched, because Adam has always loved to be close.  Words can’t quite describe what he felt like as a baby.  My sweet, soft, chunky little guy would press his hands flat against my back and rest his head on my shoulder.  He’d sit on my lap and push his diapered bottom into the crook of my arm until he was snug and warm against my side.  

Now, he still loves to snuggle.  He’ll sit beside me to watch a movie and rest one hand on my leg, leaning into me.  I think sitting snug between Kevin and me in just that way is one of his favorite things to do, and I understand why.  More than once I’ve thought, I could fall asleep just like this.

At supper time the other night, I sat beside Adam talking about things as I always do, and he responded steadily and appropriately, though not always with words.  Sometimes he answered with an expression, sometimes a gesture, sometimes a word or a string of several.  Our communication flowed easily, as it almost always does.  At one point, a contented expression softened his features and he looked intently into my eyes, a wide grin lighting up his whole face.  He rested a hand against my arm and moved it up and down, leaned in until we were nose to nose, and then pressed his cheek against my shoulder.  Though he used no words,  I heard him clearly, and it filled my eyes with tears.  What he said was something like, I love you, Mom.  You always understand me.  For an autistic child, understanding is a precious commodity.

Today, I am “all filled up” with reminiscing about my music-loving, affectionate, contagiously-funny, keenly-intelligent, absolutely-amazing son.  Even his frustration, which is not fun, can, when all is said and done, make us giggle.  He has this way of hurling out grumpy declaratives that makes him sound like a little frustrated old man trapped in a seven year old body.  SIT down!  BYE BYE ball!   NO throwing!  SIT down!  TIME to take a BATH!  Ever seen Dana Carvey’s old guy routine?  If you have, you know what Adam sounds like when he’s angry.:)

Adam’s laughter is one of my favorite sounds, and it’s my awesome-beyond-words blessing to see God’s Glory shining through every milestone he reaches.  Sometimes, it’s like he’s holding out on us, just waiting to knock our socks off.  He’ll walk in a room, and you can see him deciding, and then finally, in the most normal voice, he’ll speak to us as if the challenges he’s faced have only been a dream or a passing blur.  I can’t wait to see what the next 7 years of his life will bring.  God grant me the wisdom to cherish every day and not let a single one fall to the ground.

Happy Birthday, Adam.  We love you, and words just aren’t enough to say how much.

In case I haven’t told you lately, my children are amazing.:)  They are my heroes and the coolest people you could ever get to know.  Those of us who are blessed enough to be loved by them are among those most blessed.

I listened to a podcast today that I think almost everyone should hear and consider.  I’ve known for a long time through personal experience that autistic individuals are absolutely awesome, and I love to hear interviews with autistic adults who are living full lives and are able to articulate a little bit about what it’s like to have autism.  In this excellent interview, Stephen Shore describes an exercise he uses when speaking to large groups of neurotypical individuals to help them understand.   In essence, he selects random people from the audience to play a “round robin” storytelling game.  He instructs them to start a story aloud with one line and then has each participant continue the tale with a line of their own.  This is a fast and easy exercise, much like social interaction for neurotypical individuals, who are interpreting social cues and integrating sensory information at lightening speed without any conscious awareness.  He explains to them that for autistic individuals, interpreting social cues and integrating sensory information is a much more formidable cognitive task.  So much so that by the time these functions are engaged, carrying on a conversation feels nearly impossible.  At this point, he asks the participants in the exercise to start a new story aloud.  This time, they are not allowed to use the letter “n.”  Whether at the beginning, middle, or end of the words they choose, the letter “n” must be completely omitted.  Suddenly the game becomes nearly impossible for the participants.  At this point, Dr. Shore notes that people in the audience “are very interested in their shoes.”  And he says, “You know, anxiety is a problem for a lot of autistic individuals.  Perhaps that’s why eye contact is not so easy for them either.”

On more than one occasion, my teachers and I (I have to call them my teachers.  They teach me as much as they teach my kids.:)) have lingered in conversation over the things through which our amazing kids learn to navigate as they grow.    We are in awe of them and their ability to overcome the challenges they face.  Autistic individuals are among the most persistent, determined, and resourceful people on the planet.

A lot of autistic individuals, my son among them, crave deep touch pressure.  The right amount of pressure applied to their bodies soothes and calms them and even helps them to self regulate sensory input.  

Some of the first (and best) information I discovered in the pursuit of all things relevant to understanding my children were Temple Grandin’s own descriptions of her need for deep pressure.  I was absolutely awed when I read that this exceedingly cool autistic woman had actually built a machine (”the squeeze machine“) for herself that was calibrated to help her achieve exactly the amount of pressure that she craved, with knobs within her reach which allow her to adjust the pressure up and down by the tiniest increments.  On her website, she has even posted plans for building your own!  Just wait until my son gets old enough to understand and implement those.:)  Around the same time that I was reading Temple Grandin’s book, I read Dr. Stanley Greenspan’s book The Child with Special Needs, wherein he describes using pillows to make a “pillow sandwich” out of a pressure seeking child (I have also heard this method described using burritos and hamburgers—choose your own edible.:)).  What a wonderful idea, I remember thinking.  The trouble is, sometimes it takes a while to figure out that deep pressure is one of the many things your child needs.  It’s that puzzle piece that gets stuck in the corner of the box.  You just keep trying things, and eventually your realize you were missing an important piece.

Adam has always had what most of us would call “unusual” ways of soothing himself.  For years, he refused to sleep with his head on his pillow, but prefered to throw himself under the covers until all that remained visible were the bottoms of his little padded feet.  He sweated profusely in this configuration, but that never seemed to deter him.  About a month ago, Adam started hoarding every blanket and pillow he could find in the house.  I used to put them away while he was at school, but everyday he’d just come home and gather all of them again.  About the same time the girls stopped protesting about him stealing their blankets (”Hey Adam, Grandma made that blanket for me.”), I stopped trying to put all of them away.  Now I just stack them neatly on his bed. After a long day at school, Adam marches immediately to his bedroom, where he sheds his shoes and socks and puts them away.  Then he lays on his bed and piles every blanket and pillow he has on top of himself from head to toe.  He balances all of them carefully on the bed first, and then climbs underneath, willing none of them to fall on the floor.  I start homework with the girls, and about 20 minutes later, Adam reappears, ready to do his own homework.  Every night, he repeats this ritual when it’s time for him to go to sleep.  This has become so important to Adam that he searches out other objects that have blanket or pillow-like qualities to add to his growing “pressure mountain.”  He reminds me of a bird building a nest.  I once read about a wren out in California who built a nest entirely out of discarded office supplies.  I laugh out loud on a daily basis at the “extra” things I find in Adam’s room.  His homemade squeeze machine almost always includes a pair of incredible hulk gloves that my dad gave Kevin as a fun-with-the-kids gift.  

Sometimes, I find towels and wash cloths that had been waiting for the washing machine mixed in with Adam’s pile of “fluffy stuff.”  I have a few treasured blankets and pillows that are kept in mine and Kevin’s bedroom and office, and the only reason Adam hasn’t pilfered these as well is that we keep the rooms locked and strictly off limits to the kids when we are not with them.  I have seen him salivating over them when we spend time together in those rooms, and I can tell he’s thinking, “If only I could get in here when Mom and Dad aren’t looking…”

What amazes me and even draws tears to my eyes is that since Adam has such difficulty telling us what he needs, he has figured out his own way to get the deep pressure that calms and soothes him.  What a cool kid.

The only thing for which Adam currently has similar passion is his new communication notebook.  Having watched Adam search his mind for the right words to say and struggle with whether it should be “I have” or “I need” or “I want,” I knew I needed to find a tool that Adam could use to guide and train his memory.  Our sentence strips had become too limited; there was always a sentence we didn’t have attached.  One of my teachers asked me to help her duplicate a communication notebook that a private speech therapist had made for one of her students for use in her classroom.  Instantly, I decided I needed to make an extra one for Adam.  It has pages of useful communication helps all tabbed on the side so that we can find what we need quickly.  We’ve started with just a few pages to help Adam learn how to use the notebook as a tool without overwhelming him right at the beginning.

Adam LOVES this notebook (Actually, Riley loves it too and is very jealous, even though she really doesn’t need anything like this anymore.).  He carries it everywhere with him and even acts out the words.  In fact, on the way out of church on Wednesday night, he was looking at his communication notebook and came to the words “take a break.”  He immediately reclined on the asphalt and put his hands behind his head.  I laughed out loud and told him to get up, so he looked down at his book again and declared “hug!”  He wrapped his arms around my waist and we headed to the van.  As far as I’m concerned, he can practice that one often.:)

Inside and out, she’s a work of art.  MODERN art.  Maybe even PERFORMANCE art.

In Douglass Adams’ hilarious book The Hitchhiker’s Guide to the Galaxy, it takes Deep Thought (the megacomputer) 7 1/2 years to determine that the answer to life, the universe, and everything is 42.  Having received the answer, everyone decides they don’t really know the exact question.  Figuring that out, says Deep Thought, is a virtual impossibility.

Yesterday, Zoe sat in my lap after we finished a book together, and hugging her I asked, “Do you know how much I love you?”

“Yes.” She said immediately.

“Really?” I said, amazed at the speed and matter-of-fact way in which she had responded.  ”How much?”

“About 46.”

Well, if Deep Thought was right and the answer to life, the universe, and everything really is 42, then as Kevin later pointed out, Zoe’s answer was fairly accurate.  Aside from God, there’s nothing in life, the universe, and all of everything else that I love more than my family.:)

Never mind loving you to the moon and back and all that.  At the Circus, we’ll just settle for 46.