THE BLOG
07/15/2011 08:26 am ET Updated Sep 14, 2011

Just Another Night With Autism

On Monday night my 9 and a half-year-old daughter, Emma, was up at midnight screaming. Her ears were bothering her. This has been an ongoing problem for many months now. She is highly sensitive to the changing air pressure. As a result of Emma's sensitivity, I too have become increasingly aware of it and am surprised I have lived this long without noticing how often it changes, causing my ears to "pop", as Emma also describes the sensation.

Still, just to be safe and rule out any other issues, we took her to her pediatrician, who assured us her ears were fine and referred us to an ear specialist. To date, Emma has gone to the ear specialist three times in four months. Her ears are fine, we've been repeatedly told. She's extremely sensitive to the air pressure, which is constantly fluctuating.

"I need help!" She sobbed. "Ears popping! Have to unpop! Mommy! Mommy I need help!"

This went on for hours -- from midnight until past 4 a.m. I don't know when she finally fell asleep, as I eventually lapsed into a kind of restless state of unconsciousness. When I woke, it was just past 7 a.m. and Emma was fast asleep, arms spread out like Christ on the cross, blonde hair fanned out on the pillow beside me. My husband, Richard, had long since relinquished his place in our bed and sought refuge in Emma's. Our black cat, Merlin, preferring the living room, away from the cries of distress, was happily ensconced in the rocking chair when I came into the kitchen to begin preparing the children's breakfast.

I reminded myself that Emma used to regularly wake up at around 2 a.m. only to finally fall back asleep somewhere between 4 a.m. or 5 a.m. How we managed to get through those middle-of-the-night-awakenings month after month is something I cannot fathom. The combination of screaming in pain and requests for help -- help I am unable to give -- is what breaks my heart. I try to remind myself that being there, just sitting with her, even though I cannot change the air pressure, is a form of comfort, too.

Still, it's difficult not to feel the rising panic and accompanying helplessness that come with witnessing one's child in such obvious pain.

"Please Mommy. You have to unplug. Ears! Ears!" She'd continued to cry, while twisting her blanket up and trying to push it down and into her ear canal.

"Em, try to yawn," I told her, opening my mouth in an exaggerated yawn.

"NOOOOO!" Emma had screamed, pounding the side of her head with her hand. "Nooooo! Mommy! Mommy! I need help!"

It is during moments like these that I want to scream. I want to hit the wall with my fist. I want someone or something to help my daughter. So I wake up my blissfully-sleeping husband, Richard, and get him to help me.

"I got this," he told me after I woke him, waving me away. "Go back to sleep."

Only I couldn't go back to sleep, so I followed him into her bedroom, where he had ingeniously pulled out a balloon and told her to blow into it for a few seconds. He also had the foresight to bring some nasal spray, which the ear specialist had given us for her.

And while none of these things were "magical" cures for her popping ears, his calm demeanor helped soothe her.

I rested my head on his shoulder as we sat with her. "I'm going to lay down with her, you go back to bed," I told him. As he got up to leave, I said, "And thank you."

To say I feel gratitude that I have a husband who is so completely in the trenches with me, who is more than willing to do his share and often does much more than that, who isn't afraid to submerge himself in all things that make up our crazy family, would be a vast understatement.

An hour later Emma, still in pain, but at least not screaming like an air raid siren, whimpered,

"Ears still popping. Go to Mommy's bed?"

"Okay Em. Come on." I led her through the hallway, into our bedroom and climbed into bed with her.

Last night, exhausted and concerned we might have a repeat episode, I went to sleep early. Miraculously, Emma slept until almost 7 a.m.

"Ears all better," Emma announced cheerfully when she came into our bedroom just before 7 a.m.

For more on Emma's journey through a childhood of autism, go to: www.EmmasHopeBook.com