His favorite words are “mama,” “go,” and “bye-bye,” which I would argue is a full sentence if you put it all together. “Mama, go bye-bye.” And boy does this kid love to be outside. He uses sign language for several words. The word for outside involves him waving his arm in the air while waiting at the door. Patiently. Until we don’t get it and he starts pawing at the door.
Other things he loves to sign are “doll,” for his favorite Elena of Avatar. He says “all done” when he is over something and “please” when he wants something. He also nods his head “yes” and “no” throughout the day when you ask him questions. I don’t know for sure that he always knows what he’s answering, but I do know that he knows a lot more than we give him credit for.
The other day I was upset on the phone. He was following me on his hands and knees as I paced around the house. He was trying to sit near me (or on my foot) and making constant eye contact with me. It was almost as if he was pleading with me to let him in because he wanted me to feel better.
His empathy skills aren’t completely in place however, because he sometimes laughs hysterically if his brother is hurt and he will grab or pull at my face to get my attention if he’s in pain. All unrefined attempts at communication, but communication nonetheless.
It’s messy and unconventional, but we are communicating in our own ways with one another.
When we’re able to pair some of his new developments together it gets exciting. For example, eating food and getting him to vocalize what he wants. He will say “mo, mo” for another bite of food instead of pulling on my arm. These are the little victories that I forget when we are knee-deep in medications, tube feedings, catheterizing, and heavy lifting of a little, but very long, boy.
On those especially hard days, he manages to get us to laugh. He will start shaking his head “no” when you ask him if he wants something you know he wants. Then, he’ll break into a big gigantic smile letting us know that he has a sense of humor and for crying out loud, we should too!
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!