There are good days and bad days as a parent, and that holds true for special needs parents as well. But sometimes a day that starts out as a bad day can turn into one of the greatest days of your life.
Today was one of those days.
After picking up E from school today we had to go straight to his occupational therapy session. He hates therapy days because after school all he wants to do is go home and put on his soft pajamas (I can’t say that I blame him). He’s had a full day of activity at school, he’s tired and usually overwhelmed, and the last thing he’s in the mindset to do is therapy.
To be honest, I dread therapy days too. The anticipation of his reaction after school, the meltdown in the car, the struggle to make it through the therapy session, and then the aftermath once home. It’s all so exhausting.
But because I know it’s necessary for his progress here we are again after another tear-filled car ride, walking to the therapy room with his therapist, Ms. K, as E grips my hand tightly and buries his face in his blue blankie.
As the session gets started I put a weighted vest on E to help calm him, and Ms. K gives E some play time with Play-Doh to help him transition into the session. As he starts to play I take the opportunity to share with her that I feel like E’s communication skills are moving backward.
“How so?” she asks with concern.
“Well, for months E was exhibiting the echolalia we talked about early on – not speaking much but when he did he would just repeat words or phrases back to us that he’d heard,” I said. “Over the past few weeks, though, I thought we were making progress because I would say something to him and he’d respond with a few words or a sentence. But I quickly realized that he wasn’t using independent language to respond, he was repeating lines from cartoons he watched.”
“Hmm. That’s called ‘delayed echolalia’,” Ms. K replied. “It does show how smart he is that he can hear something once and then minutes, hours or days later repeat it verbatim, but you’re right, it is not independent language.”
The tears that seem to be ever-present these days threaten to spill out again as I turn to Ms. K.
“And that is the ONLY communication he’s giving us lately,” I pause, taking a breath as I plow ahead to reveal my real fear. “He’s in school now. If he can’t communicate how will he ever make friends?” I wail, as the tears win the battle and spill down my cheeks.
“Every day after school I’ve been asking him how his day was and he just stares off blankly. He can’t even tell me if he’s had a good day!”
Ms. K replies gently, “Have you ASKED him if he had a good day?”
“What do you mean?” I ask, as I swipe at my tears.
“I mean that if you ask him a yes or no question, he is much more likely to answer. So instead of asking ‘how was your day?’, maybe try asking ‘did you have a good day?’”
A lightbulb goes on in my mind. Why have I never thought of this?
“Can I try it right now?” I ask. Ms. K nods affirmatively.
I scoot my toddler-sized chair closer to where E is playing and ask quietly, “What are you making, buddy?”
So I try it another way. “Is that fun, E?”
“Yes!” he replies with a smile, glancing in my direction. My eyes widen as I look at Ms. K.
She nods, “See? This is a good place to start as we work to build his communication skills. He CAN communicate, just not in the same way as everyone else. It will just take some work on your part to phrase questions to him in a way that he can answer from a narrow set of options – like yes or no – and help him to unlock his voice.”
Unlock his voice. I’ve never thought of it that way. He HAS a voice, but autism has it trapped inside of him right now. And I can help him unlock it.
As Ms. K turns to work with E on his first task, my mind delves into this new discovery.
So many people waste their voice, I think. They take it for granted and spend their time, their words, their influence on frivolous things. Things that don’t really matter. I’ve done it myself far too often.
But his voice isn’t wasted. It’s stored. And I have an opportunity to help him open it up in a way where he can understand and treasure the power of his own voice.
I feel like a puzzle piece just clicked into place, and I can’t wait to put this into practice at home.
A couple hours later we are home and in the midst of bedtime routine.
E is in his soft pajamas and snuggling into the nest of stuffed animals he’s created in his bed.
As I have done every night for five years I lean over and whisper in his ear, “I love you, buddy.”
Then, taking a cue from what I learned today I ask him a new question: “E, do you love Mommy?”
Quietly he whispers, “Yes.”
My breath catches. My heart swells. My baby boy has never told me he loves me before – not with words anyway. But he just did.
Then, as tears of joy quietly stream down my face, it gets better. E finds his voice.
Curled up in his bed, eyes closed, he whispers, “I love you, Mommy.”
I freeze. He just said “I love you” for the first time!
I’m sobbing uncontrollably now, in utter joy. He opens his eyes, looking at me curiously.
“It’s okay, buddy. Mommy is just happy because I love you so much, too.” Seemingly satisfied with that explanation, he closes his eyes and rolls over to snuggle his blankie and soft Mickey Mouse plush.
As his breathing calms and he begins to drift off to sleep, all I can do is cry softly and whisper, “Thank you, God. Thank you, God.”
The pain, the stress, the fear of the last few months has vanished in this moment. None of it matters.
My baby boy has started to unlock his voice, and the first words he found were “I love you, Mommy.”
And those words are enough.
Because when you know the power of your own voice, you won’t waste it.