For months, I watched him like a hawk, just knowing that something was off. From the time I was pregnant with him, I worried- something I now credit to God as a gift of some crazy mother’s intuition.
I did everything most mothers with children with speech and social delays do: Google until they go insane. Did he have a speech delay? Did he have autism? Certainly not autism, let’s Google “autism-like disorders” 47 times a day, instead of agreeing with the idea that he could be on the spectrum.
Visiting with the Pediatrician
When I pushed at our pediatrician’s office that I KNEW something was wrong, our sweet doctor referred us to a local organization that evaluated children for autism spectrum and other social disorders. I went with the letters “PDD-NOS” resonating in my head as his potential diagnosis, after all, he was still so loving and affectionate, not a “typical” child with autism.
We watched as Knox didn’t do one thing after the next that he was instructed to do, and were horrified when he did random things he’d never done before (like lick the wall; seriously, kid, you’re killing me slowly).
All the while, I’m sitting here tallying skills in my head and watching the specialists check boxes and write notes. After a few hours, they sent us home to wait through a painfully long evening for the phone call.
Receiving the Diagnosis
When the phone finally rang, I answered with a lump steadily rising in my throat. I didn’t hear much after “autism.” I sat on the stairs, my husband in the other room with Knox and our six-month-old, Brody. I held it together almost until I hit “end.”
And then I lost it all.
The months of stress and worry exploded out of me in a silent, hysterical sob. Not my son. This was not him. He didn’t have autism. This had to be a mistake.
At that point, my husband was calling for me, knowing that I’d already hung up. He took one look at my face and his fell. All along, he’d been a champion for Knox being a late bloomer and “fine.” He was shocked and already talking about second opinions.
That second opinion confirmed the original diagnosis about a month later. It was my rock bottom, but as Christian writer Jon Acuff said, “for some people, rock bottom is a trampoline.”
I jumped into “organized mom mode” and started to do absolutely everything I could. Knox was already receiving services through BabyNet, but now that he had an official diagnosis, we had to do ALL THE THINGS. Why? Because if I weren’t busy, I would have to think about this, and because as moms, when we can’t do anything, we try to do everything.
For a while, this was my cycle. Busy, busy, busy, cry, cry, cry. Rinse and repeat. Eventually, I had to take a hard look at my new reality and learn to accept it. It wasn’t easy, and it still isn’t easy.
God can take all of those hard things and turn them into something so much better.
Autism has saved my life.
Learning to Trust
I have prayed more since Knox has been diagnosed than I’ve ever prayed in my life, and let me just say: I am a prayer warrior. I pray when I drive, I pray when I cook, I pray all the live-long day. BUT. This fervent, begging, heartbroken praying that I started to do changed me completely from the inside, out.
I was raw and real with God as I have never been because I had never felt so helpless and broken. It has brought me into such a powerful relationship with Jesus, and I could never have been here apart from it. Autism caused my husband and me to pray together for no other reason than we simply couldn’t find the strength to do it alone.
If you just received a hard diagnosis, let me encourage you to pray over it. Pray a lot. Over time, that pain of the diagnosis will fade away, and your amazing love for your child will come back into the forefront.
Don’t let a diagnosis define him- he’s so much more than just a word.
Thanks to Jessica of My Coffee is Cold, for writing this story and sharing her journey.
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