I admit it. I was a doubter. At Bo’s recent IEP, I almost spoke up and said it out loud, but the goal was already written and I kept my mouth shut, thinking we’d erase them next go around. I almost said, “Let’s just remove all goals related to verbal communication. It’s pretty clear he’ll always be nonverbal and it seems silly to keep beating this dead horse.”
We were told about a year ago that he’d likely never speak. Because of his lengthy intubation following complications from open heart surgery in Serbia as an infant, his vocal chords were damaged, to what extent, no one knew for sure. His ENT explained that we wouldn’t know until he attempted to speak, if he attempted to speak. Some kids with Down syndrome are not verbal, usually due to severe speech apraxia, a language problem.
He was able to make sounds, but they were forced out and breathy, leading me to believe the doctor was correct. Plus, he struggled to even learn simple sign language. It was a year before he used even one consistently.
And then, a few weeks ago, Ellie excitedly asked, “Mom! Did you hear that? Bo said, ‘Eat!'” I looked over to see Bo happily waiting for Ellie to put the bowl of applesauce in front of him. With her encouragement, he said emphatically and loudly, “EAT,” while he signed it simultaneously.
It was the sweetest thing I’ve ever heard. His first word at five-years-old. His voice is slightly raspy – god-fathery, I call it – but loud enough to be heard in our chaotic household. Thrilled with the results of his new found word, as we rewarded its each and every use for awhile, he’s added new ones: Go, yeah, and “kan koo” (thank you), as well as adding in some never-before used signs. Apparently, communication beyond pinching is fun. Who knew?
Our little boy with co-existing autism is also learning a bit how to socialize from Eon, of all people. He’s been watching how Eon interacts with me and attempting to imitate it. Every morning, we get both of them up for school but Bo gets on the bus almost an hour earlier than Eon. While UpcycleDaddy is getting Bo dressed at the foot of our bed, I lay at the head of it and snuggle with Eon. Bo watches.
One morning, it was cold and I grabbed Bo and pulled him under the covers with me. He laid there next to me, stiff as a board, looking around like, “Am I doing this right?” The next morning, as soon as he was dressed, he crawled up to where I was laying and laid down about two feet away. UpcycleDaddy said, “Tara, he’s trying to snuggle.” And he was. I pulled him in again.
Now, it’s part of the routine. As soon as he’s dressed, he climbs over to me and snuggles right in. He’s learned to relax into me and Daddy often has a hard time getting him downstairs for breakfast.
He melts me.