“Some animals live in the wild, and some animals live in the jungle. And some animals can swim, like the cheetah and the bear.”
My 9-year-old shared that with me out of the blue at lunch the other day. I actually wrote it down as he said it, scribbling furiously to catch every word. I was so excited, I texted my husband immediately afterward to share.
Diagnosed in-utero with a rare genetic abnormality, my son has an intellectual disability and has always struggled with communication. But things are changing, and Scott is talking. For the first time, he can tell me what he’s feeling. When I ask him, “What did you do at school today?” he can answer. He can share facts and information that interest him, just because he wants to share. And for the record, cheetahs and bears can, in fact, swim.
His speech can still be hard to understand, and Scott is choosy about when and to whom he speaks. But HE SPEAKS.
“I’m so happy!”
“My teacher loves me.”
“I want to go to school today!”
“Can you read this to me, please?”
These bits of conversation are precious to me. They’re like pieces of a puzzle, filling in the blank spaces to reveal a truer picture of my son.
“It’s like I’m finally getting to know him,” I recently told a friend.
As a mother knows her child, of course, I have always known Scott. We’ve communicated since the day he was born. But through language, Scott can reveal himself to me in a way he couldn’t before. I don’t have to guess or infer what he’s trying to say, because now HE CAN TELL ME.
To be able to communicate with somebody…it’s huge. With communication, there is relationship and understanding. There’s a feeling of, I GET YOU.
I look back over the years, and there have been so many times when I haven’t “gotten” Scott, when he’s tried to communicate and I failed to comprehend. I’m sure there have been times when I didn’t even recognize communication was happening.
My friend, who also has a child with a disability, murmured her understanding.
“And remember, Betsy,” she said. “He’s always been in there.”
An obvious statement, perhaps–of course he’s always been in there–and yet, her words pierced my heart.
He’s always been in there.
I know this. I do. But have I treated my son like he’s always been in there? How many times, with Scott sitting right next to me, have I discussed him as if he weren’t present? How often have I treated my school-aged child like a helpless infant?
And how many times have I been surprised when Scott demonstrated competence?
Too many times.
Oh, Scott, I’m so sorry. You deserve better.
“My son can learn.”
“We don’t fully know his capabilities.”
“We have to presume competence in him.”
These are things I have stressed to educators and therapists, but have I actually believed them, myself? Most of the time, yes. But sometimes…no. And why?
It all comes back to me–my own struggles, my doubts, my selfishness. I struggle to understand my son, which leads me to doubt his capabilities. Don’t you see? It’s about me, not him.
Here is what I know to be true: Scott is in there–a unique, beautifully-made individual–and he has thoughts and feelings and opinions. Sometimes I can’t access them, but my inability to get in his head doesn’t mean there’s nothing to see. It just means I don’t have the key.
But sometimes, Scott unlocks the door for me, or he opens a window. He invites me in by telling me about a song he sang at school. Maybe he’ll sing it for me. And for a moment, I get a glimpse of my son, and it’s real and true and so beautiful I can hardly see through the tears.
(Betsy Swenson can be reached at firstname.lastname@example.org.)