raising sheldon
January 26, 2016 § 8 Comments
If you have a child on the Autism Spectrum you are probably pretty comfortable with unexpected statements – some call them blurts.
I don’t love the word blurt, it sounds more like a bodily function and implies an absence of control that interrupts the peace leaving a foul impression.
Around our home unexpected statements are what keeps us on our toes, they create interesting tangents and spontaneous laughter. I’ve come to appreciate the honesty of my son’s speech and the innocence of his errors.
When he was little, my son would spout extravagant facts he’d memorized from the mountains of books that littered his days. I spent a decent amount of time verifying information with my own research so that I could participate in his interests.
This same natural ability created an entire vocabulary of funny one-liners from favorite books and movies. My son and husband could hold an entire conversation with direct quotes taken out of context.
Most days my son’s comedic timing and memory for details is a gift. Some days it’s a burden.
This week a store manager who my son’s school partnered with for practical exercises in social skill building determined it was too much work after my son commented on a customer’s groceries.
If you’re wondering what he said, I’m not telling. I don’t want to shame my son, the customer, or the store manager.
What he said, specifically, isn’t the issue. Some of his statements would make you laugh and others would make you scratch your head. There was one statement that I could conceive was mildly offensive, but most of them were simply misplaced.
I wish I could explain to the manager that my son’s blurts are more exaggerated when he’s nervous; that he will work over-time, verbally, to impress a stranger or make them laugh. Another week and the anxiety might have eased, reducing the instance of unfortunate efforts at humor.
I understand, I do. Unexpected statements present challenges, but they are also opportunities.
What might have happened if the manager stood up for the teenage boy with special needs and communicated to his customer and community that “we’re working on it.” What an awesome message one business might have made to a population of children, parents, and strangers of tolerance and empathy.
The last business did.
We’re going to be ok. Actually, we already are, but I’m sad for the store and it’s customers that they didn’t model the commitment their partnership with special needs families implies. Relationships require an investment in one another, work.
My son isn’t Sheldon Cooper, there is no laugh track to his impressive library of memorized facts or social fumbles. In the real world his embarrassments are not so easily written off and the laughter isn’t always kind.
I spend a lot of time talking to my son about others’ expectations, he’s spent years navigating social norms with the forced attention of a second language; to understand and connect in a world that does not always conform to his expectations.
This morning I wanted to speak on behalf of my son, hoping that maybe someone else might consider an unexpected statement an opportunity to exercise a different perspective and, maybe, a little patience.
stand by me
January 25, 2016 § 7 Comments
It began at the end of school last Friday. My daughter was faced with a decision to muddle through a commitment to others while feeling ill or honor her commitment to self and disappoint others. She chose the latter. Not feeling well, she skipped play practice and headed home.
We each navigate a million different versions of this decision everyday; self or others. I was raised to be a people pleaser and move through the motions of responsibility to others even when resentful of the personal cost. It is easy to understand then that I almost missed the importance of my daughter’s choice.
I was quick to consider her irresponsible before weighing the maturity of her self-awareness. Ever one to get run down and sick, she recognized the early signs of exhaustion and chose self-care.
I’m sad to say it took me too long to appreciate my daughter’s awareness of her body’s needs and acknowledge the world would keep spinning on course despite the trajectory of her departure from expectations. Thankfully my emotions played out in the privacy of my living room with only my husband as witness while our daughter made the trip home by bus.
By the time I saw my daughter I could appreciate that this was not the decision of an irresponsible, insensitive child, but an act of self-care by a sensitive child who worried about disappointing a teacher she respects and a friend she cares for. In missing practice and letting down a friend who needed a ride, she was highly attuned to the consequences of her choice.
Still, she made the best choice she felt she could and then let go of guilt for confidence.
My daughter chose to risk being excluded from her school play for her absence and was validated by a thoughtful message from her teacher acknowledging the integrity of her decision with respect for health and well-being. I still don’t know how my daughter’s friend felt or if they will be ok today.
Last night, Friday’s actions were close in my daughter’s worries. She feared out loud that her friend might still be angry and that it would be uncomfortable sitting beside someone you care about knowing they might be mad. She dreaded the class where she could not escape the uncertainty of her friend’s feelings.
Growing up is hard, it isn’t easy finding balance between our needs and others. I’m thankful my daughter could make a difficult decision efficiently and wade through the complicated consequences mindfully. I love that she understands her self-worth with the same awareness she values others.
In fact, I’m pretty sure I could learn from her practice of self-compassion and trust in others. Mostly, I’m glad she let me sit with her through it all; however it all turns out.
to my daughter
January 24, 2016 § 2 Comments
Earlier this week Dad and I stumbled across a video – you and your brother, years ago, hamming it up for the camera. It was one of those spontaneous living-room productions, siblings collaborating in boredom.
The first part of the video was painful, you were directing your brother’s performance; an overly articulated, forced execution of a joke the audience could not decipher. I was set to delete the clip until the very end when your face popped into the frame. Speaking directly to the camera, your image consuming the screen, your voice boomed with the comedic timing and grit of a weathered entertainer proclaiming affection.
Love you, people. Love ya!
It was almost physical the way you threw your words. Fearless and playful.
You have long since layered yourself in more cautious performances of self. The world around you has etched away at the tough exterior, but your spirit is no smaller.
I’m saving the clip for the days you hide behind your doubts or hesitate too long in joy. For the time when you are old enough you cannot remember being little, or when you feel too small in your imagination. When the world feels too serious and you lose perspective, I hope your own words echo my love back to you.
I want you to celebrate yourself at five, dressed in your big brother’s hand-me-down astronaut costume, directing play and relishing in the spotlight; commanding sight and tossing love noisily into the moment.
Love, Mom
off days
January 22, 2016 § 6 Comments
It was a long week. Even with the grace of a three day weekend, Tuesday felt like Monday and yesterday felt like a betrayal by Friday.
Each day I stumbled out of bed on the wrong foot, tired. My son made a messy mistake at the start of a new experience. My daughter rebelled against every morning routine. New pants fell apart and winter hats were lost at school.
The further we fell out of rhythm the more I fought the imbalance, overcompensating until I surrendered to a simpler effort.
I endeavored to start the day well, to offer care and respect; homemade breakfast and kind words at the door sealed with a hug. Cold walks with our dog, hands free and mind centered on the ground beneath my feet as I picked a path around ice and through snow to find stillness in motion.
It was an excruciatingly unexceptional week. There was no poetry in the madness, but there was beauty in the smallest detail so long as I remembered to look.
We are cups, constantly and quietly being filled. The trick is, knowing how to tip ourselves over and let the beautiful stuff out. -Ray Bradbury
a year ago, today
January 21, 2016 § 11 Comments
A close friend called at an unexpected hour with an unfamiliar sadness in her voice.
Can you come over?
It should be said this friend was new to my life, old to my soul; one of those rare individuals placed in my path by a purpose greater than our excuses to spend time together.
On this day, she was facing the early hours of a new loss and I was offered, generously, the opportunity to be present in her grief.
I remember admiring her raw vulnerability, the beauty in the honesty of her emotions. Tears like a blessing.
Reaching out and letting go.
It is the only memory I have to offer, the only way I know to mark this day.
So, I remember my friend’s grief and her love; they are inseparable. Joy is not the exclusion of loss.
I carry this lesson in my bones to live more consciously.
My friend did not pretend away her pain, she gave me permission to stand witness to her emotions.
Acting brave and feigning strength is an exhausting act; one that depletes the very marrow of our integrity with illusions of honesty. It is a facade that hides our fragility, something too often presumed a weakness.
Our relationships, family and friendship, are stronger for the tender faults that crack our hearts open further with love.
stargazing
January 19, 2016 § 9 Comments
I am a great thinker of dreams, a poor planner of deeds. My thoughts are consistently conjuring magic, while my actions are often lost in daydreams. It was this Achilles heel that inspired seasons of good intentions and misplaced effort; glow-in-the-dark stars bundled into forgetfulness.
From the time our first child was born, my husband and I made grand plans to gather the stars for our son. Holidays and birthdays brought books, a telescope, and tiny plastic stars to be stored for another time.
The telescope was a poor quality, a compromise of cost. The books were read and disregarded. The stars, a task postponed until forgotten.
This fall, before the night air became cool, you could find our son lying on the ground outside as our dog ran playful circles around his shape. My teenager was once again the elementary student of the stars, marveling at a sky unpolluted by development.
I would wonder at his thoughts, but leave him to our pup’s companionship. Just a boy and his dog without a care in the world, smaller for the scale of the sky.
There is something comforting beneath the familiarity of the stars; markers of space in memorized shapes.
After our move, watching our son stargaze and our daughter daydream about decorating empty walls, my husband and I revisited an old love with new attentiveness.
This Christmas we shared with our children a new telescope and linked together evenings under the stars. Already this winter we have begun mapping the sky and searching the texture of the moon. We also, finally, hung those pesky plastic stars above our daughter’s bed.
It was only after the last constellation was contrived that our son mentioned his lost stars, remorsefully considering the years his own ceiling waited on our good intentions. It was our daughter who counted her leftover stars and lead the way to making right an old promise.
Now both children sleep beneath the stars and we are all falling in love with old lessons in an ancient sky.
to dance
January 16, 2016 § 5 Comments
I used to watch a popular, reality based, television program called Dancing with the Stars. Each season novice dancers who are celebrities of various accomplishment, in seemingly unrelated professions, compete in dance competitions broadcast live.
Weekly I watched edited pieces from practice, the emotional highlights of conflict and struggle that documented both the relationship between partners and the evolution of individual dance routines that culminated in a live performance.
More than the elegant costumes and choreographed movements beneath theatrical lights, I admired the novice dancers for their willingness to be seen imperfectly to an audience of strangers, the honesty of their effort, and the uncertainty of success.
There is something to dance that we cannot pretend, a letting go that transcends the performance for something intimately uncertain.
We are all called upon to dance in our own way, to take risks and invest in ourselves wholeheartedly that our life is more than empty movements.
This morning I’m thinking of the ways I let go in faith and the places I hold on in fear.
For all the topics I dance around, the ways I struggle to be visible in my fears; it hadn’t occurred to me I was begging to be seen. Me, too, comes from first placing self in a position of sight.
There’s magic in stretching our arms high and looking out into the world tenderly.
artistic
January 15, 2016 § 2 Comments
In fleeting minutes of busy days, I have taken to indulging in borrowed time among old photographs; giving thanks for those images preserved in a cardboard box of jumbled memories.
Among these paper gems was a particular photograph that has captured my heart, a forgotten play day from long before our son’s Autism Spectrum diagnosis. There is joy in this discovery for a later memory, one not captured in print; a discussion with our elementary aged son and a cautious question of his understanding of Autism as so many adults introduced a new language to his vocabulary.
I wasn’t sure, then, what he understood and it was important to me that our son’s identity expand to encompass this new knowledge in a way that honored a heart, mind, and spirit greater than clinical terms and educational assessments. So, I asked our son if he understood what his diagnosis meant.
I know I’m artistic.
And so he is as he always was, a mystery of ability with not so unusual needs.
In ten years we have learned much, but it is the magic of the inexplainable that still best speaks to our son’s truth.
“The most beautiful experience we can have is the mysterious. It is the fundamental emotion that stands at the cradle of true art and true science.” ―Albert Einstein
day planning
January 14, 2016 § 9 Comments
It was just after I drew January’s calendar of days that I came across a brightly colored, inexpensive day planner. The cheerful hue drew me from my task. I hesitated, weighing the frivolousness of my find, but there was just enough joy in the discovery that I indulged my impulsivity and invested in whimsy.
Appreciative of the convenience of technology but nostalgic in my love of paper, I decided I would use the large blocks of space to map my thoughts on multiple classes, preserve fleeting inspiration from borrowed quotes, chart the work of unexceptional errands and note efforts toward personal care.
Curiosities and quotes, doodles and debts of time now sketched in a place near to where I rest. Gone are the torn fragments of hurried scribbles and misplaced thoughts in want of paper. It is a diary of days and a place of self, an active commitment to an investment of time.
“Apparently there is nothing that cannot happen today!” ―Mark Twain
