90: When Ladybugs Roar

90: When Ladybugs Roar

From Chicken Soup for the Soul: Raising Kids on the Spectrum

When Ladybugs Roar

Hope is that thing with feathers that perches in the soul and sings the tune without the words and never stops . . . at all.

~Emily Dickinson

March 8th. We sat in the clinical-white doctor’s examination room as he asked us questions and checked my daughter’s ears. We were all there — my husband, our daughter, nicknamed Bug, and our infant son. I’d known for a while, as milestones slipped farther away, that we were headed toward that day. I’d prepared for the doctor to tell us it wasn’t just hearing loss or poor parenting skills.

She was almost two years old and had never responded to her name. That wasn’t something other parents had to teach their children.

Nothing can prepare you for that moment when a doctor first brings up autism. A load of bricks drops on you.

When I wrote in my journal that night, I said, “There are no words.” I’d meant there were no words to describe the devastation we felt as parents as we sat in the doctor’s office and heard those words that would change everything. It could have also described the loss Bug had gone through. One by one, the words she’d gained were lost to the quiet of autism.

By March 8th, she had no words.

My husband and I grieved on March 8th. On March 9th, we got to work.

Our lives became a maelstrom of movement. We made appointment after appointment. Therapists. Doctors. Specialists. Interventionists. I’m not sure we actually slept that first year.

And we read. My husband and I read everything we could get our hands on. From the clinical to the crackpot theories, we read it all. I had a migraine from that first March 8th to the next March 8th from staring at print and from stress.

Several well-meaning professionals told us it was okay to grieve because it was as if we’d lost a child. And, for a while, I believed that. They said Bug would never marry. They hoped she might someday hold down a job — a menial job. We should prepare ourselves for the possibility that she’d live with us forever.

In my mind, I packed away the prom dress, the wedding dress, and the business suit.

Then, we found out our odds of having another child with autism, and I mentally and physically packed away the baby clothes and prayed my son would be passed over.

Shortly after that, the interventionists sat in front of me, as Bug played in the corner and I rocked her brother, and they handed me a paper that said my almost two-year-old had the receptive language skill of a seven-month-old. Not only had we lost her, but she had lost us.

The impact of March 8th wasn’t entirely negative. I will be forever grateful that our pediatrician listened to me on that day because we were given the priceless gift of time. Parents of young children on the spectrum can hear the tick-tocking of time in their mind. “Early intervention is key” is our mantra.

Another impact was the amazing joy of getting our child back and re-experiencing the milestones that had faded. The second “first word.” The second “first time she says ‘Mommy.’ ” The first time Bug made eye contact. The first time she put her feet in rice without screaming. Her joy in swinging and signing “more.” These are moments that tick by unacknowledged by parents of typical children, or milestones they only experience once.

You count each tick-tock of the clock when it’s this valuable.

Then there are the days that stick with you forever.

We were months into our new schedule. I’d started doing therapy at home. We were getting ready to move to a house so we could have a dedicated therapy room and hang swings and Lycra hammocks. I sat in Bug’s room, picked up a cow plush toy, and showed it to Bug.

“What does the cow say?”

“Moo. Moo.”

“What does a dog say?” The dog puppet didn’t look much like a real dog, but Bug didn’t seem to notice. We were making progress. Real progress. I was exhausted, but it felt worth it.

“Arf. Arf.”

I held up the cat. I never got tired of Bug’s few precious words. Animal sounds seemed easier than other words. She liked animal sounds. “What does a cat say?”

“Minnow. Minnow.”

It was all the more adorable for sounding not quite right. Imperfection can be just as sweet as perfection.

I held up the ladybug puppet — intending to move on to things other than animal noises.

“RAWR.” Bug made glancing eye contact with the puppet, not with me — though my face was right next to the ladybug’s. If she saw my huge, ridiculous smile, she didn’t react.

“What sound does a ladybug make?” I had to hear that again.

“RAWR.”

That day was the day I learned bugs roar. And indeed they do. From that first miserable March 8th to its one-year anniversary, our progress with Bug was nothing less than astounding. The same professionals who’d given us dire predictions were struck dumb with all of Bug’s words as she slowly stepped out of the quiet of autism.

There were struggles. There were illnesses where Bug seemed to regress, and we were terrified we were losing her again. There were days I spent two hours on the phone begging our insurance company for services that should have been covered. There was mind-numbing debt, debt we still struggle with a decade later. There were injuries — Bug didn’t recognize pain the way a typical child would, and she couldn’t tell us what hurt. But, beyond all that, there was the steady progress over time.

From my journal:

Words come now —

more and more.

Ladybugs — a lion’s roar.

You were never going to be lost.

All that I have,

all that I am,

is yours.

Bug is now on the cusp of being a teenager. My son has been diagnosed with Asperger’s — a diagnosis made easier because Bug came first. They are both mainstreamed in school. Most people don’t know — they don’t know we had our March 8th.

I think, I believe, I know that the quiet of autism can be overcome. My own ladybug has learned to roar. I’m slowly unpacking the prom dress, the wedding dress, and, given her math skills — a business suit.

She was never going to be lost. She was always meant to roar.

~Wendy Sparrow

More stories from our partners