Speak your mind — even if your voice shakes. – Maggie Kuhn
Our J-Man is starting to string syllables together. Not many, but he’s doing it. He’s slowly but surely doing it without prompting. It rarely exceeds three or four halting words, but he’s doing it.
This feels like our version of the moon landing.
After so long doubting that he would ever really talk, as I was pulling into the driveway the other morning, for the first time something struck me. I started crying in the car. I believe it now. I really believe it. He’s going to talk, and he’s going to tell us about wonders we never imagined possible.
Even if he never did talk, would it change how dear he is to me, how much I love him, how much I will cheer for him, how much I will fight for him, how awesome he is and will be? Not one bit.
But I see how hard he works at trying to communicate verbally. I see him get so frustrated and upset at being unable to get his point across. I want to know how he feels, what he thinks about, how he sees the world. I want desperately to find some way to unlock his voice. I don’t care if that’s via his voice box, an iPad, or something else. But I feel him trying to show us how much he wants to figure out how to use his own voice. The more Dale Jr. talks, the more amazing things I realize he has to say. And I feel more like a failure as a parent that I haven’t found a way to help our J-Man do the same.
Recently he has been scripting some. He’s stringing together sounds, syllables, and approximations to repeat things he hears, often from kids’ shows he likes such as the “Here’s the Mail” song in Blue’s Clues and the intro song to Pinky Dinky Doo. These are motivators for him, and we are all about those especially since so little historically has been a strong motivator for him. They are familiar, they give him something to focus on, he can use them to practice sounds, and most of all, they make him happy.
I know we all have kids spanning the entire communication spectrum, so to be clear, he’s not suddenly uttering these crystal clear sentences. Some words are shortened – some to the point they sound like rapid, breathless speech. Some of his syllables vary greatly in length and use stresses you aren’t used to hearing. His inflections at the end of words may be all over the place, though they sound almost melodic. But you know, it doesn’t matter how he does it because there’s no one ‘right’ way. This is the purest music to us.
We were talking with his speech therapist recently, and we were all rejoicing that he’s started experimenting with these inflections and different intonations. He’s trying to close off words and say all the sounds in the word, not just the first syllable or two. He works so hard to get it all out, and now he’s staying with it longer and trying to finish the words he starts. He’s known for his clipped, monotone syllables when he does speak. He’s creating his own verse now with rhythm, tone, and meter all his own, and he continues to experiment and improvise.
What he’s doing now sounds like jazz. No, it is jazz.
He experiments with the notes. He is unbound by the stress and unstress of our so-called speaking. He is finding his own way. He is making it up and discovering it as he goes along. We can’t make his mouth, tongue, throat, and lungs make the sounds. He is the musician here. We can try everything we can think of, but so much of this is his journey of discovery. And he’s doing it.
His syllables sway and dance haltingly like middle schoolers at their first dance. He takes verbal steps slowly, carefully, daringly like a toddler, but he keeps at it, laying out one syllable after another. He lines them up like whirling dervishes, dreamy sloths, or slippery snakes, not going where he wants them to yet, but indeed they are going somewhere exciting.
And like a crossword, enough clues are now filling in that it seems bit by bit to be getting easier for him. Eventually there’s a tipping point where the momentum shifts in your favor. Maybe, just maybe, we’re finally there. Slowly but inexorably, it’s happening.
He sees everything around him, feels entire constellations of emotions, has wants and needs, has opinions and ideas, and has untold riches to share with the world. He may experience some or all of these things very differently than most of the rest of us, but that’s what so wonderful about it. What he sees and feels and thinks is unique in all the universe. I want him to be able to share that with whomever he wishes to.
And now these little rays of sunshine are poking through. It’s going to happen.
I see his face beam when he does get the words out. The light bursts forth from every pore in his face. I see his whole body rejoice when he is heard and understood. If there is anything that makes my heart sing more than seeing this in one of our children, I don’t know what it is.
And most of all I see it in his eyes. He now believes it, too. It’s going to happen.
I want this as much as anything. I want him to believe in himself. I want him to know that he can find a way to do whatever he seeks to do, no matter how long it takes. Forget however long it takes anybody else. I want him to know that doesn’t matter. This is his journey of exploration and discovery. He may have to take paths less travelled, or ones not travelled at all. He can blaze his own trail through sheer force of will. There’s magic out there to be found.
I remember all the days trying to get more than ‘kuh’ out of him (the sound that once meant anything and everything). It took months of work day in and day out to get just one new sound. I remember having no idea how he’d ever find ways to communicate and how we’d ever be able to help him tell us what he wants, needs, and thinks.
But slowly and surely over these years, it’s happened. One syllable at a time, he has pulled himself up this Super Everest. I’m still not sure how all this will turn out, but he’s made a believer out of me. He has that effect on everyone.
After so long, I believe it now. And we get to spend the rest of our lives discovering everything he has to say. How amazing is that?
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