To Boldly Go Forward

In this galaxy there’s a mathematical probability of three million Earth-type planets. And in the universe, three million galaxies like this. And in all that, and perhaps more...only one of each of us.

-Dr. McCoy, Star Trek

I’m sitting in a crowded government office waiting for my number to be called.

My autistic 18-year-old son and husband sit outside in the car, listening to music to pass the time.  “We have to drive to an office, and you just need to come in very quickly to sign a form.  This is a program that offers support to help you.” My son smiles nonchalantly, “Oh okay.” He doesn’t have a concept of what legal adulthood means, of the value of money, of delayed milestones. He’s happily unaware. Frequent texting back and forth with my husband ensues to hazard a guess on our place in the queue.

My husband is logical about the whole process. “Our son is the same boy the day before he turned 18 and the day after he turned 18. Frankly, I see an upside in all this.”

I am caught up in the significance of my oldest son turning 18, in expectations, in milestones, in my dreams for all my children, in how to best honor my son’s individuality and self-advocacy balanced with protecting his vulnerabilities, and in societal definitions of what it means to be an adult.

So, on his 18^th birthday, his 6, 570^th day on this earth, he is legally declared an adult.  

This milestone requires action on his parents’ parts, mere mortals that we are. While certainly not the case for all autistic adults, as countless autistic individuals continue to college and fruitful careers, my autistic son’s path has led us to these doors on this day. There are many decisions we must make in regards to searching out community and government programs for adult services, deciding what is needed and what is not. While I’ve researched and gathered all the necessary information, I’ve lingered at that fork in the road, feeling immobilized at times by my own emotional pain and indecision, unable to move my feet forward into action. The frontier of adulthood--what it means for my son, what it means as my husband and I make decisions on his behalf that we hope lovingly serve him best--is a process of constant reflection as our decisions carry great emotional and practical weight. I want to do right by my son.

While sitting in the crowd, I ponder the swirling stories of those around me. I hear the accent of a hard-core Southerner.  I’m sure some might consider being a Southerner as a true disadvantage in life; I should know, as I am one. I wonder if he brought any backwoods moonshine? I could use a shot.  While I’m an expert in deciphering Southern twang, I also hear foreign languages, words I do not understand. I see the lines of hard roads etched deeply into solemn faces. I hear a father talk about his son’s schizophrenia.  I see a woman laboriously drag herself on a walker, wheezing for her next breath. The cynic in me scans the room for would be scammers, as if I could somehow divine this by looking around.  I feel a bit of judgment.  I feel a bit of anger.

I shouldn’t have to be here.

Suddenly, I become aware of a new visitor to this government office, one that brings a surprising break to the melancholic emotions I feel. In fact, he brings a laugh.

  

Sulu. Yes, Sulu for all you Trekkies out there. Don’t be jealous, but I’m certain Sulu is directly talking to me. Ah Scotty, are you there too? Beam me up there big guy, as I’d like to soar the universe in search of grander adventures!  

No, I didn’t suddenly qualify for my own fast pass application for adult services based on a diagnosis of hearing voices from Star Trek tell me the secrets of the universe. Sulu, played by George Takei, was talking through the TV monitor in a commercial. Apparently, George found a gig late in life being a spokesperson for a government agency.  Wearing his Sulu costume and standing in the Starship Enterprise, he beams with a huge smile and gives a thumbs-up, saying what a breeze it is to apply for services.

The ludicrousness of Sulu jolts me into awareness.

I shouldn’t have to be here?

It’s funny how I always find a way to question life’s perceived injustices, especially in my very small, personal world.  Is that the best use of my finite time? I’ve never really questioned why I was born in a democratic country and never had to walk through a war zone or fight for freedom as my father, grandfather, uncle, and countless generations of people have been called to do. I’ve never questioned if my appearance or socioeconomic status or intellectual capacities made it easier to find more opportunities in life. I never questioned how I’ve never lacked for a family and social support system that provided life affirming love and guidance, especially during the hardest of times. I’ve never questioned that I was given the ability to conceive not one, but three children and that for nearly two decades I’ve had the pleasure of motherhood’s sweeping, enriching experiences.

I think the biggest question I should ask myself is not why do I have to be here at this government office, but why I imagine I shouldn’t?

Like any parent, I want numerous doors opened for my child, opportunities afforded him that better my own.  Isn’t that part of the parental dream? We can say this should be about my son, but when a child is vulnerable, and I have to make decisions on his behalf, then it is about me too. So rather than deny or bury my sadness surrounding the decisions before me, I honor those feelings as natural and valid, knowing that in doing so, I will find strength to continue to be the mother my child needs. Our stop at this government office on this day is simply one moment among a multitude of meaningful moments; we are where we need to be. Life is filled with pathways we don’t always understand but that doesn’t preclude finding happiness and meaning on those divergent pathways.

During this time, my daughter calls me, not knowing where I am. “I got accepted! I’m studying abroad in London this fall!” The juxtaposition of these events—at a government office for one child, academic study at one of the most prestigious universities in the world for another--could not feel more surreal.  Each experience is beyond any imaginings I initially had as a mother. Looking back, each pregnancy with my three children always stirred as I felt the miracle of life unfold within, followed by all the intimacies and joys of motherhood like when I first held each baby to my breast and felt an intimate connection that required no words, when I stroked a baby’s head and discovered a new meaning of softness, when I smelled a baby smell so sweet I thought I just might bask in that heavenly scent all day long, when I marveled in the miracle of life itself, in the wiggle of toes, in the grasp of tiny fingers holding my own, in the fluttering of delicate eyelashes, in the beating of a heart next to my own, in the coo and breath against the cradle of my neck, in the burst of love within my being like no other love I had ever known before. I like to remind myself of my earliest mothering moments because they were so pure and uncomplicated. My focus was on one thing only: the miracle of an individual life, full of purpose and originality, in all its variations and colors and temperaments and circumstances and unknowns, unfolding in loving communion and bonds of attachment, born of love and a divine spark.

Our number is called. I text my husband. I meet our son at the front door as he is wearing headphones to block out unpleasant sounds.  We walk to a desk as he cheerfully greets the representative, taking his headphones off so he can hear her instructions. “Sign here.” “Is that it?” he says.  “Yep, that’s it.” “Okay, bye Mom!” He doesn’t walk, but runs through the crowded office of people out the door to his dad waiting in the car. The vision of him running in such a carefree fashion, untethered to societal concerns through that crowded office towards the exit, fills me with a range of emotions that includes pride, which I cannot do justice with words, other than to simply say how much I love my son. He is happy.  He is free. He defines his life in simple, here and now joys. “Mom, I composed a new song on Garage Band; let me play it for you! Mom, listen to the birds singing! Mom, let’s walk the trail by the lake and look for geese! Mom, look at those flowers! Mom, I hear the train coming! Mom, I love you!” We are blessed and transformed by his presence, by his unique and lovely humanity.

And so, like we all do, we boldly go forward, not knowing what adventures await, but knowing that life is ongoing, always full of possibility and hope.

Second star to the right...and straight on 'til morning.

-James Kirk, Star Trek VI: The Undiscovered Country, quoting Sir James Barry (Peter Pan).

Hope in a Hundred Acre Wood

Wisdom, Happiness, and Courage are not waiting somewhere out beyond sight at the end of a straight line; they're part of a continuous cycle that begins right here. They're not only the ending, but the beginning as well.

― Benjamin Hoff, The Tao of Pooh

“Mom, I want to see the play!”

“Mom, have you bought the tickets?”

“Mom, I want to go!”

“Mom!!”

And so my autistic son implored. Pushed. Cajoled. I bought the tickets.

Truth be told, going to see a Winnie the Pooh play with my 18-year- old son wasn’t exactly on my bucket list.  

SAT prep? High school graduation plans? College trips? Relationship issues? Wrecked the car? Yes!  

Winnie the Pooh? Not so much.

While over the years I’ve gotten better at following my son where he takes me--even if it’s out of the ordinary--the ups and downs of the journey have sometimes chipped away at hope. I even guard against it at times. It hurts too much. There, I said it.

However, I bought the tickets.

I hoped.

Within a few days, he said…

“I can’t go!”

“I can’t be in crowds!”

“I changed my mind!”

“I will not go!”

“You cannot make me.”

I encouraged. I said, “Let’s just talk about what you are thinking. No one will force anything.  Just talk. Just listen. Just consider options.”

I hoped.

I sent a note to school.  A counseling intern talked with my son about his fears. I sent another note to two different therapists who work with my son.  One offered encouragement and shared a story about facing his own fears. Another offered an upbeat phone chat with more details about the play and later sent video of rehearsals. In all ways, my son was supported, assured that whatever he decided to do was okay.

I hoped.

Suddenly, my son emerged one morning for breakfast.

“I thought about it some more. I want to go.  I can wear a headset if it is too loud.  I can just try for a few minutes.  I can step out if I need to.  I want to go.”  He also offered, “I’d like to make you and Dad proud.”  

I hoped.

As an added history lesson, my son stopped attending public school at age 9, hasn’t been to a movie theatre since he was 10 or so, quit going to church around the same time, rarely can handle plane trips, and, during a few catastrophic months, could only attend school by hiding in a make-shift fort under a table while various teachers comforted him through his intense fears.

Sometimes, our story seemed stuck, unable to move forward.  Other times, it felt we were going backward in time, revisiting chapters over and over again, ones that we thought we had fully understood and completed.

Hope? At times, it hurt too much, despite the intensity of love.  

Standing in a dark theatre waiting for Winnie the Pooh to emerge, my son says, “No, I don’t want to sit Mom.  I need to move.”

A kind therapist, who planted the seed to attend this play, hung out next to him. After sitting for a few minutes, I realized my son wasn’t going to join me in the seats, and so I joined him by the back wall.

I watched him cheer the cast at different points, even hearing him say, “Wahoo!” and “Yay!” As he clapped, his laughter and smiles held me, as if in a deep embrace.  At one poignant point, he became quite self-aware. “I’m doing it! I’m here!” He burst into a big smile, body gyrating in a giddy dance of joy. In that moment, he seemed mindful of one thing only: pride in himself.

No moment could have meant more to me during the play.

As life tends to do, though, we had our distractions.

I didn’t see him spontaneously grab his phone to call his Dad. He later told me, “I wanted to let Dad know that I was enjoying the play!”

Need I mention that was my second favorite moment of the day?

Even though my son always carries a cell phone, it is used to talk mostly with his family, particularly with me after dropping him off at the curb at school.  In a small bit of recent independence, he walks up the three flights of stairs at school, and lets me know when he reaches his classroom. “Mom, I made it to class! I hope you have a good day!”

At the play, his Dad missed the call, but quickly called back, which is endearing other than our son’s ringer was full blast. I noticed. So did the crowd.  Heads turned.  One patron shooshed us.

After the etiquette police rolled in, we both responded.  I felt embarrassed.  Why didn’t I think to turn his ringer off?  Why did my husband call during the play? My son instinctively didn’t pick up the phone, and turned it off. While he joyfully kept watching the play, anger on my part descended. How dare she shoosh my son?!! Didn’t she know what my son had accomplished?

Of course she didn’t and neither do most people. Oh but what a story it is, which is why I tell it. A fulfilling life holds all range of emotions and experiences: joy, sorrow, hope, despair, laughter, suspense, surprise, set back, and triumph. The story of my autistic son’s life is a beautiful story, whether we are shooshed or not.

My son couldn’t stay the whole time, as he quite calmly asked to take a break at one point. He doesn’t understand all the fast paced words and his sensory system marches to its own beat. However, he didn’t rush to leave entirely. He wanted to wait for the play to end so he could meet the cast. At one point, he met the director of the play and shook her hand. He later told me he found her to be interesting and nice.  In another moment of excitement, he ran up to the backs of cast members sitting in a circle and shouted out, “You were fantastic! I loved the play!” They didn’t quite know what to say to his overture; stilted looks; a smile on a parent’s part to ease the awkwardness. His therapist and I helped him think about how to get a person’s attention. He tried again, this time face to face. “Hello! It’s nice to meet you!”

We left with my son expressing that he would like to meet more teens like him, and pondering when we could try to see another play. He picked up his cell phone again.  He called his Dad. He then called another friend and therapist.  To each of them he said, “I did it! It was great!”

Two days later, he spontaneously rode a train with a teacher at school, something he has not been able to do for years.  After that, he said, “I’m ready to go see my sister at college.” He couldn’t attend her high school graduation.  He couldn’t fly to see her for the two years she’s been away. Needless to say, we overcame a host of logistical and financial scheduling conflicts to book that trip.  Our entire family flies in two weeks.

Confidence.  Over a jar of honey in a hundred acre wood, I think my son discovered it again.

Hope. Even when it feels elusive or guarded, it has been there all along. When you love, hope is never-ending.

I hope.  

A Heart Shaped Rock

For my brother Jack who still inspires me (1955-1978) and for a beautiful girl from Burma…

She exuberantly runs to me; her cherubic face defined by the lightness of her smile.   Each week I tutor her, she draws me in. If not for my oldest son, our paths would not have crossed. His school serves the autism community and hers the immigrant/refugee community; both are located far from my home. While my purpose for the last several years has been to offer guidance and encouragement in these diverse worlds through my volunteer work, I am often the one who walks away humbly educated.

As we traverse bumpy asphalt towards a row of trailers used for tutoring, the gray-cast sky and light mist of rain provide the frame. Upon entering the room, another child hands out homemade, heart shaped chocolate lollipops.  A plate of sweetheart candies with messages sits on a plate for sharing.

I had forgotten all about this day until my husband had texted earlier Happy Valentine’s Day. While once I expected holiday fanfare in my younger years of marriage, I have come to view this day as an artificial, socially constructed, retailer manipulated kind of day. I texted back the same, more in trite obligation, as if love could be understood by a few words or a particular day.

There is meaning in this day for me, just defined differently than most. For no matter where or what I’m doing, at some point on this day, memories quietly, respectfully, and sadly step into consciousness. I have not forgotten you. When I feel those memories surfacing as I step on the school pathway, I keep firm boundaries around the pull of emotions.   Not now.

Through the year I’ve known her, we have laughed together as we read countless Junie B. Jones stories; creative bursts abounded as she learned to craft her own inspiring stories. We have found a sense of camaraderie as we stretched out on a picnic blanket in the warmth of the sun during a school event. One tearful time, she shared of her family’s harrowing struggle through gun shots and an ocean crossing, fighting for a piece of the American dream that I have often taken for granted. Her story telling jostles my recollection of my father’s journey as a small boy to Ellis Island with his family in search of the same.

On this particular day, as we settle into our chairs, she looks sweetly and expectantly towards me, clasping a heart shaped rock in her hands; she fills me with a sense of wonder and awe through the depth of her nine-year-old eyes.  She begins, “When I saw it was a heart, I wanted to give it to you. I was playing hopscotch by myself.”  Gentle square etchings of my own childhood-play add soft colors to the moment. “When I got home, I washed it and made it look nice for you.”  Like a burst of vibrant color filling in all the gray hues, the moment felt like being held in a deeply illuminative and warm embrace.

As I carried the heart shaped rock in my coat pocket for the remainder of the day’s hours, periodically running my fingers across it, I allowed memories to flutter into consciousness. A drive with my brother in his ever so cool Mach 1. Fleetwood Mac playing on the eight track. The sounds of the ocean and seagulls at our weekend beach excursions. Then, the day. Valentine’s Day. My name bellowing out from the loudspeaker in my 7^th grade classroom. The ensuing, prayerful drive to the hospital that had been my brother’s home for the last six weeks. The look on my mother’s face as I entered the waiting room. “Is he gone?” my trembling, 13-year-old voice called out, surmising the answer. Brick upon brick pouring down in immobilizing heaviness, a part of a me held back, suspended in time trying to hold them all, searching a lifetime for release. Death knocked on the door of my 22-year-old brother and did not ask our family’s opinion on the matter.

I recall the unopened Valentine I had for my brother that fated day; I take it out of a box from time to time, imagining my childhood hands carrying it to my brother who would not be able to receive it.  My handwritten message was to the point: keep fighting. The words enclosed around me, dead weights, meaningless and mocking, for most of my life, really. Yet, over three decades later, the words my brother did not see rose up within me, like comforting, purposeful guides.  Maybe I had been living those words all along, finding others to walk alongside me who embodied the same spirit of fortitude. As I held a heart shaped rock pulsing in my hand, a nine-year-old girl’s Valentine reminded that this day, no matter its loss, had always been defined by love.

.

Labels, Light, and Love

“Your son has pervasive developmental disorder, not otherwise specified.”  That’s a mouthful to say, let alone hear.

It was explained as a type of autism.  That was 16 years ago.  I did not have the Internet at home.  There was no Google for further research. Dustin Hoffman had provided my only experience of autism in the movie, the Rainman.

Looking back, the declaration of the actual diagnosing words from a stranger--a neurologist--is fuzzy.  What did those letters, PDD-NOS, mean? Could a socially constructed diagnosis tell me who my son would become?

When I got home from that appointment, teary-eyed and uncertain, I looked at my son with his large brown eyes, head of blondish-brown ringlets, and cherub face.  Despite a quite delayed vocabulary of words he could say at that time, we had found our rhythm together. 

In our first year together, I intuitively discovered if I laid him on the floor, and placed my head several inches over his, he would run his delicate, tiny hands through my long hair, looking up at me, calm and connected, as if in a cocooning tent of safety. I found that if we rocked in the rocking chair in his room in complete darkness while I softly talked about everything we did that day or sang songs, he was calm, resting contentedly against my chest. Sometimes, my heart ached as I yearned to hear him coo or respond back in some more demonstrative way, but he didn’t at that time.  

On the day my husband and I returned from the neurologist visit, my son handed me a skillet. He couldn’t form the words to express his desires, but his gesture told me all I needed to know. He happily ran around the house as I whipped up an egg for him.  Looking at my sweet, innocent son doing his best to communicate with me, I knew, despite my fears of the unknown, we would find our way together.

Due to his unique sensory system, he explored the world in ways foreign to me. To merely throw rocks in a creek wasn’t enough for him; we often found him wading waist high, and on a few occasions--and to my great alarm--wading neck high. He needed to feel it, water wrapping around him, holding him secure.  The neighborhood pool? Being fully dressed was not an obstacle to jumping right in. An ocean swim, in 30-degree weather? We’d watch from the shoreline in winter coats as he happily swam. Puddles?  They were his personal pools, as he laid fully clothed in them.  Rainy days? He begged to play outside.  Muddy exploration in the rain?  Even better! Bushes?  I found him lying on our hedge once, as if to merely see it was not enough to fully comprehend it.  A swing set? As much as he loved to swing, climbing across the top beam was far more compelling.  Other mothers often called to me or flinched in fear as he climbed. “He’s fine,” I’d say. “He’s a great climber!” Sunlight coming in through the windows? He squinted his eyes and directly stared, lingering in the light. 

My autistic son’s unique passions and sensory system have enhanced my own life experiences. I’ve swam oceans in the rain with my family; I’ve driven in a convertible alongside my son with the top open in a rain storm as we laughed together in the thrill; we’ve sung at the top of our lungs by traffic lights in that same open topped convertible oblivious to anything but the joy of connection through song; I’ve chased him through a park as we giggled on a carefree day oblivious to the fact that moms don’t usually chase 17-year-olds around in such a way; we’ve rode bikes together on freezing nights because he loved it; we’ve rode public elevators and chased each other on spiral staircases in large buildings simply for the joy of it; we’ve parked under highway tunnels and played around with our echoing voices; we’ve chased geese by tranquil lake trails; we’ve found the hidden path by the library to hear the song of birds; we’ve put up the birdhouse in the backyard to further his passion; we’ve stood by fast moving trains and felt an exhilarating embrace of power as it swept by us.  

Our experiences led us to build relationships with others that transformed not only him but also me. We’ve met the kindest and most open-minded of people that affirmed the goodness of life in countless ways; I consider a small group of professionals as transformational in the progress of my son. Whether cultivating his unique passions or providing safe harbor during more challenging times, they provided something many could not: understanding, loving acceptance and a belief in the goodness of my son’s personhood.  

The hard truths, though, were also in abundance along the way. Societal rejections occurred across a wide swath from the looks of despair on the mothers’ faces of his first playgroup when I said his diagnosis, as if their kids could catch it, to family member responses that we had been cursed or that it was best to keep his diagnosis a secret, to the lack of social invites from his classmates, to a church that never reached out again after he had a crying spell while others silently gawked, to a public school suspension as punishment for the challenges inherent to his disability, to a poorly trained school aide who would later scratch my son, and to private school administrators holding my nine year old son down until his fight left him and he fell into slumber, all because he was afraid to go to his class due to fears around sudden surprises and noises.

During a particularly hard time, I hired a home play therapist for a couple of hours to simply be with him, to bond, to form a friendship. Following such hard school experiences, he became increasingly scared of new people and situations; he began to hide in a closet or under a blanket when he met them; otherwise, he was cheerful and talkative as he avoided all visual contact. One therapist--who showed great promise as she bonded so nicely with my son, eventually drawing him out from hiding--abruptly quit, providing superficial excuses. I later learned she had a long history of quitting families as she had a type of child she liked to work with, and my child apparently didn’t make the cut. I was forlorn by yet another rejection.  I sat on a couch as tears burst forth, shoulders hunched over, my fight and resolve leaving me.  How could I keep finding the strength to continue through so many marginalized moments? How could I stay strong for my vulnerable son?

My son walked over.  “What’s wrong?” he asked. I spoke honestly.  “I’m just sad that she decided not to continue to come over and play with you.” My son’s face showed a tender expression as he walked over to the couch and sat next to me. He softly said, “I’m sorry,” as he sweetly placed his head on my shoulder.  We just lingered that way together for a few minutes.

At that time, my son was always on the go and rarely sat still, let alone sat right next to someone. He also was so traumatized by many of his life experiences, that I hadn’t seen displays from him that he considered the mindset of another. In that moment, surely the composition of my tears was suddenly reconfigured from sadness to joy. Moments of such empathy and pure presence are rare gifts in life, and there was my resilient son fully present, sharing such a soulful gift with me. In that moment, he reminded me that we are not defined or limited by another’s interpretation. Our loving bond held the power to trump bias and setback.

A few years later, when much had been overcome, and his coping and reflective skills had grown exponentially, he looked at me one evening, gently and sweetly saying, “Mom, you saved me.” Those words came around the same time that he began to initiate tender hugs and spontaneously say,  “I love you.”  He was 14.  

Looking back, I realize, though, how much my son saved me. By his courage, he taught me how to live more fully, experiencing all my highs and lows, neither boastfully nor blamefully, but rather with acceptance. By his presence, he taught me that no matter the emotional pain of any one moment, loving connection ultimately defined and empowered us. For whether we were joyfully running together through a park without a care in the world, or crying together through a more difficult time of struggle and rejection, we have lived our moments, however they came to us.  We have lived them together, in light, in love, in truth.

Abandonment.  Isolation.  Marginalization. Judgment. Fear. Autism didn’t deliver those things; society did.

Strength. Resilience. Overcoming obstacles. Triumphant joy. Meaning.  Society didn’t give me those things; my beautiful son did.

He just turned 18.  He was beaming by his birthday cake, tasseled curly hair and eyes that shined.  “I feel like part adult, part kid. I’m a little of both.” He also describes himself as “part autistic, part typical.”  His siblings stood around him making silly faces together as the camera snapped.  He composed a song on Garage Band in honor of his birthday and watched a favorite elementary aged show. He also put out bird food and hoped to see the family of doves again that have been recent visitors to our backyard. He talks a blue streak and has a quirky sense of humor, often cracking us up or himself.  While he still has struggles uniquely his own, he has learned to cope better, no longer displaying the big emotional outbursts that characterized his earlier years.  His spirit is calm.  I now have the pleasure of frequently hearing him spontaneously call out, “I’m so happy!”

Just like those early years, his path going forward feels unknown and unplanned, as traditional milestones do not come to him on the world’s prescribed timetable; yet, just like I would learn early on, the unknown still holds possibility, joy and hope. It is a different and unexpected path, but it is a path that holds moments of purity and beauty just the same. He states that he plans on always attending his school, which he loves.  Thankfully, they do not arbitrarily graduate and push their students out at any certain age, but rather continue supporting their social and emotional growth into young adulthood. He also plans to live with us, his parents, forever.  He wouldn’t mind getting an apartment one day in a high rise (for those fun elevator rides) and also near a train track (for those exciting swoops of power when you stand by a passing train).  Whatever his future holds, our family will be there, happily by his side, sharing in his passions, swept up by the power of love.