Our Autism Beginnings, Part 1



I met a mother the other day whose child was recently diagnosed with autism.

Talking with her brought back a slew of memories and emotions. I wanted to hug her, but I didn’t. I wished I had a printed copy of this post by Jess Wilson to give her. I would have pressed it into her hand and said, “‘Nuff said.”

I’ve always intended to write about the beginning of our autism journey, but for some reason just couldn’t go there…

Perhaps what stands out in my mind the most is this pit I had in my stomach for over a year – this secret fear that something was wrong, very wrong with my sweet baby. Or maybe it’s the countless hours I spent worrying and reading and searching the Internet. And then once I found the answer, all the time I spent frozen in denial.

Rhema had difficulty from the start. She was a colicky baby. She barely slept for months; she would cry and scream and spasm and stop breathing and turn purple. The softest clothes seemed to bother her baby skin. She drooled incessantly, soaking a bib in a matter of minutes. Her sucking reflexes were poor and so breastfeeding was a bit of a nightmare.

But we survived the rough start, and by six months she was doing much better. I had my “What To Expect the First Year” book and was proud to note that not only was she reaching all the developmental milestones, she seemed ahead of schedule.

At 12 months old, she was bright-eyed and interactive and had a few words. She captivated me. Like most first-time moms I took lots of pictures and, because Brandon was deployed during the first year of her life, I recorded numerous videos. (It still tears our hearts to watch some of those videos now and see the contrasts.)

Over a three month period, we seemed to “lose” Rhema.

When she was 15 months old I took her to the doctor and said, “She stopped saying ‘hi’.” The doctor brushed aside my concerns, reminding me that children develop at their own pace.

Some months passed and I took her to another doctor. He had her hearing tested and she was diagnosed with conductive hearing loss due to fluid accumulation in her ears. It made sense. We noticed that she never startled when the doorbell rang at home, and she did not respond to her name. Perhaps a hearing loss explained everything — the head-banging, the tantrums, the spinning, the lack of engagement with people in her world.

Surgery was scheduled for ear tubes. I remember the surgeon patting me on the shoulder.  “Don’t worry, Mom”, he said, “After this she’ll be talking so much you’ll wish she would shut up!“

But why won’t she look at me? Why can’t I get her to look at pictures in books when I point them out? If I wanted her to see something, I had to repeatedly wave the object in front of her eyes.

After the surgery, we patiently waited for the promised language explosion. It never came.

She was a few months shy of her second birthday when I started scouring the internet late into the night. My Google searches included: ‘my child doesn’t eat’, ‘my child doesn’t sleep’, ‘my child doesn’t speak’.

It didn’t take long for the dreaded A word to pop up.

If you don’t say it out loud, it doesn’t exist.

I thought of my older cousin with autism – a strange, isolated boy who flapped his hands and made funny, high-pitched noises all the time. As kids we were both scared of him and intrigued by him. To my sisters and I, he was our Boo Radley, only we nicknamed him Crazy. He grew up and was put in a “special home.”

Autism? No way. God wouldn’t do that to us.

To even entertain such a notion felt like a betrayal to my little girl.

I got angry at the computer and shut it down. I peeked in on Rhema, finally asleep in her crib. She was on her knees, her pajama-ed bottom sticking up in the air. Long eyelashes on an angel face.

She’s perfect, I thought. Nothing’s wrong. Nothing’s wrong…