While there are so many wonderful aspects to living with Koan, I think the most difficult is navigating his inability to communicate. I might change my mind on that in a couple of years as he continues to grow and get heavier. But, having a nonverbal child for ten years is a real challenge. To be clear, Koan understands a bunch of verbal communication. There are keywords and phrases we are very careful to use so we don’t confuse or upset him. For example, if we are preparing to go somewhere (anywhere) and someone says, “I need to get my shoes.” This will send Koan into paroxysms of joy — he is deducing that someone is going somewhere and he might be going out. However, if he’s not going with us, we all have to work to choose our words very carefully to avoid dashing his expectations. There’s a whole subset of words we don’t say at home unless we know for sure that Koan will be involved — bath, go, hungry, grandma, store, etc… I understand that at school they have similar issues with words like: recess, lunch, bus, and PE. So, Koan understands a lot of language and he’s able to differentiate between contexts. We can say bus or recess at home, and he won’t care.
What vexes me is not Koan’s understood language, but rather his expressive language. It’s pretty clear to me that he has a lot of ideas and thoughts, but he has very few tools or ways to get them across. He only has one sign he uses at home, “more.” We have an Oliver Twist moment every time we get him out of his feeding chair (regardless of how much he’s eaten). And, it’s really heartwarming when we put him in bed each night with a hug and kiss and he signs for “more.” But, I really wish he had more than that one word…
We don’t have access to (or frankly, the discipline to use with fidelity) his “yes/no” switches from school. So, this particular deficit produces a ton of frustration for everyone. Koan is very pleasant about 80%+ percent of the time. He’s a joy to be around. The other 20% of the time, he’s not as much fun. I would guess that about 5% of his bad times are just bad moods. We all have occasions where we are in a bad or unpleasant mood for no apparent reason. The other 15% of unhappiness comes from not being able to tell us what he wants or what’s bothering him.
We do a lot of structured guessing — “Do you need a new diaper?” “Are you hungry?”, etc… Again, many times, what’s bothering him cannot easily or clearly be answered with a “yes/no” question. Occasionally, he’s just bored. It would be great if he could tell us what would be fun, but we have to just try things — playing an episode of Sesame Street, singing to him, or presenting toys. But, more often than not, we don’t guess right. And, he becomes inconsolable. When that happens, we usually give him some alone time in his room to calm down. Then we start over, trying to guess what he wants.
While Koan is not verbal, he still does use his voice. Like most parents, we are pretty good at recognizing his themes or tones in his vocalizations. We can tell quickly when he’s angry, sad, hurt, or thrilled. One of the things we’ve learned over time is the stages of his frustration vocalization. He will start off with his normal, sing-song vocalization. But, when starts to get progressively more frustrated, he begins to produce a sound we call “the car alarm.” It starts with a lower sound that extends out to a long, high-pitched yip. It then repeats; just like the eponymous alert.
When “the car alarm” starts, the timer has started toward a full meltdown. Everyone is on the clock to figure out what needs to happen to make things right. We start with a simple, unwritten decision-tree type protocol. Is it near a mealtime? Does he need a new diaper? Does he want a new toy? Does he want to hear a song? Should I pick him up and snuggle with him? If you are thinking he’s training us, you would be absolutely right.
Jeri has a much higher tolerance for Koan’s frustration. She rightly points out that he has me wrapped around his pinky. But, I think that the fact that Koan can (and does) manipulate his caregivers to get what he wants is a good thing. It’s a successful coping mechanism. I certainly hope he gets better at expressive language. However, he’s successfully finding ways to get complex problems solved with tools he currently has. I”m grateful for that. That being said, it’s no fun hearing “the car alarm” go off at 5:30 AM on a Saturday morning.