Our Autism Beginnings, Part 2

As Rhema remained silent and distant, I continued my research about speech delays and autism until one day I found the end of the Internet. I was sure I’d read every article and visited every discussion board that existed on the topic. There was no blood test for this thing. And there seemed to be a lot of other mothers out there in cyberspace doing the same thing as me – wondering, worrying, comparing their child’s behaviors with another’s.

I let myself entertain the idea that maybe, just maybe Rhema might have somehow gotten a little sprinkling of autism-like dust on her. But I reasoned that if we could get her to age three without any professional saying the A word out loud, then we’d be home free. I learned the screening questions for autism and came up with good excuses for why she did not point or play with her toys appropriately, why she was fixated on string.

We moved back to the States and spent time visiting my husband’s family, and it became painfully obvious to me that Rhema was very different from her cousins. There was no denying the significance of her delays. I called my sister on the phone and finally uttered the word out loud, “Rhema’s acting like she’s autistic. I… I just can’t seem to reach her!” My sister cried with me on the phone. (I’ll never forget it – June 4, 2006 – that same day my dear sister hung up the phone with me, drove herself to the ER and was diagnosed with MS.)

A couple months later I met up with a couple other mothers at the park. Their children played together, walked and talked nicely and ate healthy food for lunch. Rhema never seemed more hyperactive and isolated. I was uncomfortably pregnant, and a sweet friend would get up and chase Rhema down for me every time she bolted. I stood among the others and watched my girl. It was such a beautiful day, the sun was shining, the fields were velvet green. Rhema ran in dizzying circles on her toes, her head cocked to the side, her eyes half-closed.

And I knew. Finally, I knew.

It was time to stop fighting the truth and instead fight for her. Time to stop fearing the label. Time to get the help she needed.

That night, in the middle of the night, I woke up my sweet husband. He knew she was a little different, he had been concerned, but he didn’t know. I didn’t want to break his heart. I didn’t want to tell him that something was wrong with the precious girl I’d given him. Another baby was growing inside me, and there was a chance she could have it, too.

It did break his heart. But he did what he’s always done well. He took my hand, prayed to Jesus, made a plan, and loved his girls as best he could.

A month later we had an official autism diagnosis. A few months after that Rhema was diagnosed Landua Kleffner syndrome, a rare epilepsy. (I write about that here.)

I’d love to say I handled it well. I plastered on a smile, went through the motions. But I spent a good year angry, bitter, and disappointed in God. I felt like the child I thought I had had been stolen from me; my dreams for her shattered. I did not lean on my husband enough, the man God perfectly gave to walk beside me – instead I grieved alone. I was jealous of typical mothers and their typical children and their typical lives.

Slowly God began to demonstrate His faithfulness to us in the midst of the pain. He provided a community of friends, teachers, therapists, doctors that have stuck with us like glue. He began to teach us about compassion and perseverance and thankfulness and real faith — lessons through our nonverbal daughter that resound loud and clear. Certainly, there’s still heartache, but there’s more grace and strength to bear it. There is much struggle and work, but there is genuine joy in the journey. There is acceptance, but there is also expectation that God’s got a bigger, better plan than we can imagine. That He is going to boggle our minds through this little girl!

He already has. 

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Helpful sites:
Autism Speaks ASD Video Glossary
Assessment test for PDD (pervasive developmental disorder)
Autism Speaks First 100 Day Kit

Our Autism Beginnings, Part 1

 

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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…