If only I’d had a sounding board. Another mom who knew the signs. Someone who could have helped me spot that E’s lack of words, food aversions and sensory sensitivities might be adding up to something that needed attention.
But E was my first child. I had no frame of reference, nothing to compare his pace of development to. And I had no sounding board.
The “if only’s” of life can drive you crazy. I try not to live in that space, but there are some days where the “if only’s” crash into you like waves during a hurricane and send you reeling. Today is one of those days.
If only we’d caught this earlier. If only I had known that his lack of eye contact, lack of words, and strangely high pain tolerance were directional signs on the road to an autism diagnosis. If only I hadn’t been so blinded by love for my baby boy that I failed – maybe refused – to see signs that now seem so obvious.
As I sit here wallowing in the “if only’s” I suddenly recall an incident when E was just a baby and we discovered his high tolerance for pain.
He was six months old and was still only around 10 pounds, about double his birth weight. Because he was still so small I was always worried he’d get hurt easily, so I was obsessively gentle with him. That’s why I couldn’t understand why he was arching his back and grimacing as I changed his diaper.
“What’s wrong, baby?” I’d asked soothingly, trying to finish the diaper change as gingerly as possible.
The task finished I’d picked him up and laid him against my shoulder, gently patting his back. That usually soothed him, but this time he stiffened and arched his back again. He didn’t cry, but his face was showing that grimace again, like he was in pain.
My whole body tensed right along with his.
I called the pediatrician’s office immediately and they directed me to bring him into the office. As I buckled E into his carseat he arched and grimaced again. My heart was pounding.
Once at the pediatrician’s office the wait was brief, but when your child is in pain every minute feels like an hour. You feel helpless.
The nurse called us back and launched into a series of questions. The pounding spread from my heart to my head.
Finally the doctor came in and began to examine E. As the doctor gently felt along his back, E arched and grimaced again.
“There!” I said. “That’s what he was doing when I changed his diaper, and when I buckled him into his carseat!”
The doctor turned E over onto his tummy and as he pulled the back of his diaper down slightly I saw it.
“What is THAT?” I asked, pointing to the angry red mark on E’s low back.
“It appears he has an abscess,” the doctor explained. “Did he have a scrape or cut or anything of that sort on his back recently? Anything that would have allowed an infection to develop?”
“No, not that we saw,” I replied. “But even when he does get hurt it’s hard to tell because he doesn’t really react. I don’t know how we missed seeing that, though. It looks so painful!” I began beating myself up mentally as I tried to hold back the tears in the doctor’s presence.
“Your little guy must have quite the pain tolerance, because an abscess can be extremely painful,” the doctor said. “We’re going to need to drain this and treat it right away.”
Looking back now, that day provided another clue. Another sign on our road to an autism diagnosis.
If only I’d been able to read the signs, or had someone as a sounding board that could read them for me. Someone who had any knowledge or experience with autism. If only.
But if I did, would I have listened to them? Or would I have been blinded by a mother’s eyes that see only perfection in her child?
Maybe God knew I wasn’t ready to climb the mountain of that diagnosis yet. Maybe He was allowing these clues along the way to help to prepare me – though I didn’t know it at the time – for what would become the mission of my life.
The coming mountain would be my mission. A mission to show others they are strong enough to climb the mountain. That they are not alone in the valleys.
No more “if only’s.” The mountain in my mind can be moved.
So I don’t have a sounding board. Fine.
Then I will be one.
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