I remember the day that Ollie’s daycare called to tell me that he had laughed for the first time. I’m ashamed to say that I didn’t believe them. At least, I wouldn’t until I heard it myself a few weeks later. And while it is not a common sound in our house, I can’t tell you the difference it made in my life to know that he COULD smile and laugh. Simply knowing whether he was happy or not made all the difference, because it was communication, at its basest form.
And then came the day that I got my first actual sign from him. He was sitting in my lap, facing out and, quite uncharacteristically, he tilted his head back to look me straight in the eye and licked his lips. Hungry. I almost peed myself trying to get up and get food for him. Since then, he’s learned “hungry,” “all done,” “more” and “ouchie.” Praise God for another layer of communication with my complicated boy.
Not too long ago, I got the following text.
Oliver can say him name. Out loud. He’s only ever spoken in vowel sounds and this is no different, but now, he’s using syllables. “Ah. Ih. Eh.” And most wonderful of all, he knows we can understand him. And from the look of sheer braggadocio that he gets when he does it, that seems to be a bigger gift to him than it is to me.
For a long time, I’ve believed that, with much training and patience, Ollie would be able to answer yes and no questions with the help of a button switch toy. He clearly understands most of what we’re saying and does hundreds of various actions on command by now. I’ve been pushing his therapists to move toward this goal, but it’s been taking a long time to get everyone on board with a toy made just for him. And patience is tooooootally my strong point.
Last Thursday night, boy and I were hanging out on our own and I thought, “You know what? He’s not always going to have a switch toy with him. He should know how to say yes and no with signs for when he doesn’t.” So, being the expert therapist that I am, I grabbed a couple movements that he does naturally (kicking for yes, arm swipes for no) and started work. Yes, yes, yes, no, no, no…We mentally settled in for the first of what would probably be months of training sessions.
About ten minutes later, I asked him, “Ollie, are you hungry?” He looked me square in the eye and unleashed a kick that would make Chuck Norris proud. I stared at him. “So….you’re saying you are hungry.” Kick. Remember the last time this happened and almost peeing myself? Try tripling that heart rate and you’ll have a good idea of where I was at this moment.
I tore over to get some food and get it back it to him. He frowned and spit it back out. “What’s the matter, bud? Don’t you like this kind of food?” He paused, and so did my breathing. That little elbow raised, ever so slightly. No. I was pretty sure I was going to have a heart attack by now, but cool was kept. “Do you want to eat more of it?” Elbow. No. “Do you want a different food?” Kick. Yes.
1.5 seconds later I have a new food torn open and in his mouth. “How’s this one, Ollie? Do you like it?” He smiled and kicked. Yes, I will eat this food. And he did. And I couldn’t speak for the rest of the evening.
We spent the rest of the weekend practicing and having full conversations like this. We laughed. We both sobbed when I couldn’t understand. We yelled at how unfair it is to not be able to move exactly when we want our body to move. And we sang. Or at least I did.
Ollie has always yelled along when I sang to him, and I’ve always just assumed he was singing. He comes from a long line of singers and he is a total music snob, making it very clear when he does or does not like the music he is hearing. Two weeks ago, he told his case worker to please stop singing to him because she was hurting his ears. We’re working on communication first, people. Social graces later.
But this time, I have a secret. I can ask him. As he yelled along to my singing, I stopped and looked at him over my shoulder. “Ollie, are you singing with Mama?” He stopped for one second, looked at me with incredulity, kicked so hard he almost launched himself out of my arms, and went back to, for sure, singing. This time, singing with a big, joyous, wide-open grinning mouth. Now mommy knows I can sing, too.
This story is good enough to end here. And if it did, I’d die happy. But if you’re already crying, hold on. It gets worse. Early last week, he’d had a rough day at school, lots of seizures and cold issues. He was moody and lethargic when I picked him up. He wouldn’t interact or respond at all. I eventually took him into his room, held him and sang him a few songs. That perked him up. I swung him up to face me, his favorite talking position. Now that he felt better, he had LOTS to say. He chattered and talked at me non-stop for about five minutes. “Ah, ya, yah, oooh, ahehoh ya me,” etc. I won’t repeat everything he said because it wasn’t all kosher. But eventually, he slowed down and I finally got a word in edgewise. “I love you, Ollie,” I said. He smiled. He thought. Hard. Then, with every shred of energy he had, he kicked his little body up and said, “I, Ah, Oo, Mama.”
“Did you just say, ‘I love you, Mama?”
Ollie looked at me with a look I’ve never seen. It was pure shock, surprise and then……….JOY. He smiled so big his face nearly broke. Then he let out a huge yell and kicked a ninja kick. YES.
I didn’t sleep at all that night. And to tell the truth, I didn’t even tell this entire story, or announce this new development to more than two people all week. I don’t know why. It felt…too big to tell. Too unbelievable to tell. And I’m sure there are already some of you that are thinking, “How wonderful that Alysa can believe her son talked to her.” It’s true, he has not agreed to do much of this on camera yet. He knows when he’s being asked to perform as a party trick. And he’d rather give himself a seizure and mess up the whole video than perform for me. So far. But I shall prevail.
It’s not every time, it’s not perfect and it’s NOT easy, but I can talk to my boy. And believe it or not, ever since he’s realized that he can be understood, he has been pushing himself to find new, creative ways to use his body to communicate with me. He’s also having more tantrums when Mommy is just too dense to get his new word. I don’t blame him. Sometimes I want to have a tantrum over my denseness, too.
But the kraken has been released. Not only can Oliver talk, it turns out he’s always understood what yes and no meant. He just needed to know how to say them his way. And I am humbled at the thought of how much more my boy understands EVERYTHING we say around him than any of us thought.
He is there. He is smart. He has opinions. He is resourceful. He is stubborn.
And he can sing.