autism & choosing love over the things

autism & choosing love over the things

Just a few days ago our family experienced “a day” or “one of those days.” It might be the never-ending summer, businesses opening and then closing, again, or the general anxiety of COVID-19. However, as a mom I believe our day was attributed to the in-and-out of the car, ABA therapy, errands to the pet store and gas station, finding new shoes for my very opinionated 7-years young daughter, and helping my mom to sort through memorabilia in preparation for a down-sizing move. When I look at this day, there is a lot of things to do – and very little joy. There are lots of things to attend to – and no time for play. And, honestly, I wasn’t unhappy or dissatisfied on this day. Yet, on this day, I learned a little bit more about love and compassion.

Between looking at the clock and timing my attempt to go into the pet store while leaving a popsicle in the car and dashing to the ABA therapy location so I wasn’t “that” parent that showed up a few minutes after pick-up,” I now know that I didn’t take enough time to pause. To breathe. To recognize that, “s*it, this day is over-the-top busy and I’m exhausted!” Instead, allowed my energy and emotions to control the outcomes of my day. And, that they did.

So, here it is. After all of the errands and running to-and-from appointments, my daughter sat at the piano bench at my mom’s house on the hill. She oohed and ahhed over the small treasures that her Grammie no longer wanted – and was generously giving to her. Her eyes bubbled with excitement when she saw the vintage 1960’s Barbie music box. The perfect porcelain figure wore a long royal blue dress and white gloves that touched the elbows. A satin, royal blue cape draped over the figure’s shoulders and tickled her neck with a snowy fur. Alas, the best part of the porcelain Barbie figure, was her hair, according to Sissy. Her hair, blonde and long, swirled perfectly to the right side of her head into a small bun. I watched as my daughter caressed the hair on the figure and announced, “She is so beautiful, Grammie! I love her! I really do love her.” And with that giggle of pleasure, my daughter and her Grammie carefully wrapped the porcelain figure (along with a teacup, saucer plate, cookie platter and ceramic chickens) in paper and placed it securely in a box with the other treasures being sent home with us.

Then we piled into my car, placing the box of porcelain and treasures in the back of my SUV. We turned on the radio and just listened to the music while we drove away from Grammie’s home in pursuit of our final destination – my son’s ABA therapy appointment. During this drive Sissy said, “Mom, where can I put my new doll?” and “Can we hang a special shelf for her somewhere?” and “I want to listen to her tonight when I go to sleep.” I smiled to my daughter through my driver’s side window. She returned the smile with a wink – an affirmative for, “Yes!.”

And our trek continued. … We picked-up Buddy from his ABA therapy, we snail-crawled through traffic to get to the west-end of town where we lived, and we listened to Pirates of the Caribbean’s My Name is Barbossa musical composition not just once, but thrice. And then, at last, we pulled into our driveway.

Before the engine turned off, doors flew open as if we were arriving to our final destination spot after a 12-hour drive. I popped the hatch of my car knowing I needed to haul in a box of treasures into our home. And then I heard it …

a pile-up of fragility

scattered on our front drive

pieces and shards of glass everywhere

“Oh, Sissy,” I declared as I looked at the pile of broken treasures on our driveway. “I’m so sorry that your treasures are broken!”

“It’s okay, Mom,” she said with calm confidence.

“No, really, it is okay to be a little upset because I know how much you liked the doll with the blue cape. She made you smile.” I said.

“It’s okay, Mom, really. It is just a thing. All of these are things.”

“Oh, Sissy, I love your heart! Thank you for being so understanding.” I responded.

Buddy interjected with a broom and dustpan, announcing to the entire neighborhood that we needed to STEP. AWAY. FROM. THE. GLASS. And, we did just that. Buddy carefully swept all the pieces into his dust pan and then let them fall into a plastic bag, making clanging and clashing sounds.

“Hey, Mom! Look, this one survived!” pointed Buddy to a small teacup and saucer set that had somehow rolled onto the grass parallel to the driveway. The delicate white porcelain held painted lilies on it. The cup itself was no larger than a tangerine – the perfect proportion for my daughter’s young hands.

“Sissy – look! You still have something from Grammie’s treasure collection! Look – the teacup and saucer survived!” I proclaimed.

She gently, and protectively, held the small cup and saucer in her hands and walked into our home. She smiled at the small set and started to talk about her doll, Mary Ellen, who now wanted some blueberry tea with a spoonful of sugar. She announced that Mary Ellen needed to change her clothes into something more comfy – because having tea is relaxing she implied. Then, as she placed the cup and saucer on the counter, Buddy rolled into the room with his pirate-ship and crocodile.

And, then, another crash.

Now, looking at the floor, the three of us remained speechless for a few seconds. Five-hundred-and-two thoughts ran through my head: it wasn’t meant to be, all things happen for a reason, there are more treasures to be found, I hope she isn’t too upset, and on. … During my few seconds of processing time, Sissy noticed a subtle shift in her brother’s behavior. Suddenly, his head drooped down and chin touched his collar bone. Boogerd sniffles snarled through his nose and then tears started to crawl down his face. And before I could respond to my child’s sadness, my daughter stepped to her brother and wrapped her arms around his body. She spoke soothing words, “It’s okay Buddy. I’m not mad. It’s just a thing. Things can always go away. It’s okay. It’s okay Buddy.”

In this moment, I could only hug both of my children who also embraced each other. I relished in the compassion my daughter showed for toward her brother. I delighted in knowing that she chose love over a thing. I leaped for joy inside because she understood life.

I share this story with you because so often our neurotypical children stand tall and strong without us recognizing it. Sissy is compassionate beyond her years and I attribute this to her heart – and her brother who has taught her the art of patience.

Do you find this valuable? Do you know someone who might also enjoy this? Please share so we can collaboratively create a more empathic understanding of autism.

pink lipstick is our new normal

pink lipstick is our new normal

We welcome our first day of social distancing and online learning with warm pajamas, mugs of vanilla steamers, and a sparkler-like excitement about all the newness that surrounded us.  Chromebooks position themselves in a row at our long, wood kitchen table.  Sissy respectfully decorates her teal Chromebook case with flowers and butterflies – a form of inspiration and a declaration of her own self.   We sharpen colored pencils with palm-sized sharper.  We organize filing drawers with new labels, adapting to the home learning environment and the desire for a sense of school organization systems.   Lined paper and composition books retreat from the depths of school backpacks to the tops of our counters and long, wood table.  Overstuffed sitting chairs are pushed into the corners of our living room, making space and time for the coveted recess time, which, alas, is indoors because of the snow.  And, of course, in the core of all of the school supplies draped across our daily lives, sit a moisturizing hand sanitizer gel.

And the transformation, as complete as I thought it was (and still is), continues to move and shift and gently shake our lives.  The quintessential snapshot of my kids getting ready for a typical school day includes screaming and yelling and crying as we attempt to find the right outfit for the day, fill our bellies with nourishing food, and pull the sleep bugs from our eyes.   The normal school day includes scurrying to the car at 7:55 AM with lunchboxes filled with goodies for the day, water bottles carrying icecubes and Gatorade, homework folders, Thursday folders, and small, non-essential treasures like a small metal pig in a pocket and a small stuffed ladybug in the hand.   These mornings, laced with hints of chaos, were at the core of our day.  This was our normal.

And now, the gentle shake to our lives has started.  No longer does my daughter squirm when I ask, beg, – no demand – that she gets on her clothes for the day.  Instead, Sissy now wakes herself up before 7:30 AM each morning.  She brushes her hair in the looking glass that sits 3 feet above the floor.  She sings a song about learning or the birds or the mermaids.  She finds an outfit and then actually puts it on.  And, then, she applies a creamy layer of hot pink lipstick.  Puckering her lips, like her grandmother does so many times with her, she waltzes out of her room and down the stairs to make her big entrance into the family room.    She lifts her arms high into the air – as if offering a grand standing ovation to her fans – and sings, “I’m ready for my homeschool day, Mommy!”

Press repeat for 5 days.  Now, add in a dash of self-determination.

On day 2 of our home learning adventure, Buddy quickly realized the only pants left in his drawer were either the very uncomfortable wedding pants (pants with buttons) and his sweatpants that were splattered with paint.  Neither pair of paints suffice.  So, I hear the yell from the top of the stairs, “Mom, you haven’t done the laundry and I have nothing to wear!”  I smile and walk over to the staircase, responding with: “I know, Buddy.  I am behind on all the mom duties for the week because I am also trying to be your teacher.”

And then something happens …

“Ugh.  Sigh.  Ugh.  This is ridiculous!” comes from the top of the stairs.  Then there is a thump, thump, thump.  And then there is a swish, swish, swish across the wood floors in our living room, followed by another, thump, thump, thump.   “Mom, how do you turn on the washer machine?”  I hear from the depths of the downstairs washroom.   In less than two minutes, Buddy thumped and swished his laundry basket down the stairs and into the washer machine.   In my 9 years as a mother, the laundry was always the thing that I took care of.  It was always the chore that was a bit too difficult to complete because of the height of the washer, finding the correct temperature for the type of clothing, and then drying everything with soft-wool dryer balls.  Inside, my mommy radar told me to go with it – and let this moment unfold.

So, I join Buddy and show him the correct button to push to start the laundry.  As soon as the button chimes there is a click in the washer and the lid latches.  Then the water begins to pour from the sides – like two water hoses filling up a pool.  Buddy smacks his hands together and jumps up-and-down.  He celebrates his small victory.  He celebrates his new learning:  cleaning clothes.

Despite the washer machine not having laundry soap in it or my daughter growing-up too fast with her pink lipstick smile, I will admit that many positive things are happening in our cooped-up, social-distancing, new normal lifestyle.  We have loads of new baked goodies, small canvas filled with watercolor mosaics, and tiny birdhouses constructed by the youngest of engineers.  And, while it is not the ideal lifestyle I want for my kids or for any of our children in our world, I do believe some beautiful gems can be uncovered as we gently shake our normal.

two lollipops and pink leotards

two lollipops and pink leotards

My daughter flits and floats and flies in her pink leotard on Friday afternoons.  She squeals with excitement when she sees her ballet-reena friends at the end of each week.  All four girls are dressed in shades of light pink and black with pink leotards and cascading skirts adoring their tiny waists.  The left foot of each girls’ ballet slipper holds tiny gemstones, a reminder to the girls about left vs right and sparkle vs no sparkle.  My daughter prances into class, twirls around to watch her skirt spin and then slides onto the purple butterfly (her designated spot for ballet rehearsal).  She giggles and squeals, again, with excitement as her favorite Beauty and Beast song fills the room.

Her very young instructor, perhaps a senior in high school, begins class with a series of exercises such as pointing the toes and then flexing.  My daughter and her ballet-reena gal pals all point-and-flex at various times, a sort of off-beat, yet beautiful rhythm that is created by this small group of friends.  I love watching toes extend to the wall while another girl spins in her seat (rather than extending her toes).  I giggle when my daughter lays down on the hard, wood floor to take a break from the strenuous exercise and says, “I need some chocolate.”  Again, all the girls bubble up with giggles and the teacher once, again, looses another moment of ballet rehearsal.

And then the bright pink pom-poms are placed in a line – each spaced 3-feet from the other.  All the ballet-reenas create a line (with my daughter as the lead) and begin what is their favorite part of rehearsal: leaping. The teacher explains to the giggle-button girls to leap and extend over each pom-pom.   She wants them to fly and soar.  She fills them up with so much spirit that when the leaps begin it doesn’t matter what they look like, because the girls are truly in love with flying and leaping.  My daughter, a bit athletic, runs and jumps over every pom-pom.  She is fast.  And she cares less about her form and more about cheering on the next ballet-reena.  She watches as other ballet-reenas skip and then kick-up their legs over the pom-pom.  She claps when her gal-pal meets her at the other side of the pom-pom line, a form of triumph.  And then she does it, again.  She leaps with her skirt floating in the air and lands and then leaps and …

The rehearsal spins into a series of little girl jokes about butterflies and cupcakes – and then more giggles.  When they practice their twirls it is difficult not to also laugh out loud when the girls twirl into each other, fall onto the floor, and then bubble-up with giggles, again.  And the instructor is cued for class to end when my daughter’s ballet slippers come flying off, because they “are too tight,” and she just can’t run in them.  The instructor shrugs her shoulders and then smiles.  “Okay, girls, class is over,” she announces as she gracefully walks into the back room to quickly return with a plastic bucket.  The girls all run, squealing with delight, as she lowers the bucket to their small 3-foot bodies and lets their hands choose a lollipop.  This is the glorious reward for the giggles, the leaps, the toe points, the giggles, and more giggles.

And, as the ballet-reenas rush to their parents and siblings, showing them their lollipops, my daughter approaches her teacher.   She boldly says, “Miss Sandy, can I please have two lollipops?  It is not for me.  It is for my brother.”   Miss Sandy lowers the bucket down to my daughters eye-level to allow her to choose a lollipop for her brother.  She carefully digs for his favorite flavor – watermelon.  Then, she lifts her head, and says, “thank you, Miss Sandy.”  Miss Sandy smiles warmly and says, “I know. And, you’re welcome.”

Moments like this make me look like a fabulous parent.  A beautiful exchange of manners and compassion.  A true example of thinking of others.   However, this moment is nothing about me or my parenting.

When you take away the layers of pink and giggles and glitter, my daughter is a well filled with compassion and caring for others.  Inside my daughter is a spirit that guides her always to look out for her brother, to be his angel, to be his protector.   She knows that the lollipop will bring a smile to his face.  She knows that he may or may not say thank you.   She knows that he may or may not even eat it.  But, she does it any way and she does it every Friday at the end of each ballet-reena class.

And, as we walk to the car, I watch her lollipop twirl around in her mouth.  The strawberry and kiwi flavors filling her cheeks and tongue with delight.  And when her lollipop is gone, she still holds onto her brother’s watermelon lollipop.  She holds onto it tightly, protectively, with her pink taffeta skirt bellowing from her car seat and her ballet-slippers on the wrong feet.  She will always ask for two lollipops and wear pink and run fast.  And, I believe, she will always protect her brother’s spirit.

 

 

Picture Credit:

Little Girl Ballerina Ballet Dancer Dancing is a painting by Pablo Romero

 

 

 

 

my lil’ girl

my lil’ girl

When I peer into the future, I see my daughter advocating for the rights of special needs humans.  I see her spreading her love through song, through dance, through her witty story-telling.  She is a light that shines bright in my life.  Whatever she does – and whomever she becomes, I do know a few things about my daughter. …

 She is fierce.  No one can tell her what to do or when to do it.  And in her short five-years, she has embraced being that strong force and nurturing soul for all persons she encounters. My lil’ girl climbs boulders and big rocks in her lilac tutu.   Nothin’ gets in her way! …

… She is fabulously loving.  On the days when my son has no words for hours, or when he spits tears from his eyes, or things just are not right, my daughter wraps him with love.  Every time I see her put her hand to his arm and say, “It’s okay.  I love you.  Take a breath,” I sit in amazement.  I am struck with awe.  How does my lil’ girl know so much about love? …

... She sings loud.  My girl sings with joy and exuberance and passion.  In the coffee shops, she stands on the chairs and belts out “Let It Go,” while holding her cake-pop microphone in on hand.  Nothing stops her from her voice and her love for music.  She feels the beat and the sounds within her small body … and in turn shares it with the world.  …

As a mother, I am constantly reminded by my daughter that life is force to be reckoned with, to be celebrated, and to be loved.

And as a mother of an autistic child, my daughter teaches me to remember that she is also here.  She is boisterous and she is fabulously loving, because she knows … She knows her brother needs a constant sanctuary of quiet, of love, of understanding, and of clarity.  She knows more than I’ll ever be able to share.

Yet, it is important to remember that I am her mother and she is my daughter.  There are many moments when I have to remind her to play and have fun and not worry.  I say things to her like, “I’m the parent and I want you to be you,” and “I love how much you love your brother.”  As easy as it is to allow her take on the role of the protector, I have to constantly nudge her to remember her spirit and her love for all parts of life.  I have to remind her to be a child.

My message to any parent with an autistic child is this:  Remember the beauty of both of your children.  Remember each child offers the world something unique.  Remember to learn from the moments offered from each child.

Remember our children are children.

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