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
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