This was originally written in May 2021. I’m not sure why it was never published, but I found it today, March 15, 2023. Every word is still true, I believe, so I’m publishing it now.
April 25, 2018 changed my life forever. Our amazing son, Eli, was born. Anyone who is a parent can attest to the major life change a new baby brings. Many will say it’s worth it. I am in that camp. I would move Heaven and Earth to get my baby boy what he needs. And, often times, what he wants.
As Eli grew in developed, it was brought to our attention that some of his milestones weren’t being met on time. However, we were often told that since he was, in fact, meeting them, that it would all work out. He was eight months old before he could crawl, and it was a strange scoot/army crawl. He was 12 months old before he could crawl on all fours. Twenty one months before he walked on his own. He was diagnosed with low muscle tone at birth, torticollis developed by four months, all of this contributed to the delays. “Don’t worry. He’ll catch up.”
When we returned to America after two years in Indonesia, our pediatrician sent us to a neurologist because at 2.5 years old, he was unable to run or jump.
The neurologist ruled out anything “scary” as she put it. No Autism, no Cerebral Palsy. They diagnosed him with benign familial macrocephaly – meaning he has a big head and comes from a family of big heads. That combined with the genetic low muscle tone meant he had to work extra hard. Her prescription – physical therapy.
We were enrolled in Missouri’s First Steps Program which allowed for a physical therapist to come to our house once a week at a very, very discounted rate. It was going well, and we saw improvement. Around Christmas, however, Mike and I began to be concerned with his communication. Yes, his vocabulary and language had grown dramatically since returning home, but he struggled. He also acted like a little parrot, repeating everything we’d say.
First Steps gave us a speech therapist. We quickly saw results.
By March, however, I began an eternal dialogue in response to some of his behaviors. “He’s three,” I would say when he wouldn’t respond to his name after the first, second or third time. “He just really likes that toy,” I would say when he was hyper-focused on how Thomas the Train moved on the tracks. “He just needs to be around more kids,” I would say when he had difficulty answering yes or no questions. Even harder, simple things like his name or age.
I would brush it off in my mind, but in my heart, I knew something was off. I had an idea in the back of my head, but I wouldn’t, no, I couldn’t speak it out loud for fear of what would happen next.
That was until he graduated out of the First Steps program and began out patient physical therapy.
His new PT was a hard adjust for me. His previous one had been in my home weekly, saw my pregnancy with my second child grow, and enjoyed speaking with me about our work in Indonesia. The new one seemed disinterested, if not put off by our work. Her PT was intense, which is what Eli needed, but I didn’t feel like she was patient enough. It was a rough start, in my mind, but it was what it was.
About four sessions in, she gave me a piece of paper with the word ‘echolalia’ on it. She spoke with one of the OTs and explained that his repetitiveness was caused by that. She told me to google it and see if it made sense. There’s lots of videos to help you teach him on YouTube, she said.
She was right, haha. But what I found also brought up the idea I’d had since March. The scary thought I couldn’t say out loud.
The next session, when Eli just would not focus on anything by the wheel of the scooter he was supposed to be riding, she said, “Have you ever had him evaluated for Autism?”
There it was. That thought. That word that scared me to no end.
That was my sign. This stranger, for lack of a better word, spent four hours with my son and could see in him what I had seen for months, if not years.
I then spoke with my husband (and by spoke with I mean blind-sided) and called our pediatrician. She agreed that another check with the neurologist was in order. Our sixth month check up happened to be the next week.
That appointment lead us down this journey of discovery. A brain MRI, full genetic testing, and a spot on the waitlist for the Autism Center of St. Louis. Our appointment is miraculously in September. I will be shocked if we don’t receive a diagnosis that day.
But wait, he was cleared of anything on the spectrum in October! Yes, yes he was. But, we believe that his language was so far behind and we were so focused on the physical delays, that this went unnoticed. It’s hard to notice a kid repeats and struggles with answering questions when he doesn’t speak much at all.
What does this have to do with the God who sees? God saw all of this, from the beginning. He created Eli, inside and out. He orchestrated it so that we’d graduate from First Steps at just the right time. He gave us a PT who not only paid attention to Eli’s behaviors, but is a mother to a son on the spectrum as well. It took her fresh eyes on the situation to speak what I couldn’t say myself.
Sometimes, that’s all it takes – a fresh perspective. Asking a friend not involved in your relationship what she thinks. Or asking parent friend from school how their child responds to discipline, or whatever the case may be.
When we’re in the thick of it day in and day out (it meaning a job, project at school, parenting, a marriage, etc.), it’s hard to see beyond what’s right in front. Someone from outside can shed new light. And, you’ll be surprised who God has in your path to do just that. Even if they’re unexpected.
I’m thankful every day for ‘El Roi,’ the God who sees. He sees me, He knows me, He loves me.