One of the most common questions that Derek and I get when people ask us about Sam, is how we know what he is trying to tell us. Now I think that I am pretty amazing for being able to decode the 2-year-old gibber-english that my daughter speaks on a daily basis in tones ranging from mocking to anger, and sprinkles of happy in between. But with Sam… That is a whole new level of skill. Just kidding. It’s no skill. It’s the worlds longest guessing game.
The question is always so funny to my husband and I because honestly, we have never known what it was like to have Sam directly tell us what he wanted. Since the very beginning, it has been a guessing game with him. Food? Milk? Binky? Word Party? Up? After asking and picking up so many items, we eventually get it right. Or he ends up crying in our arms cause we can’t figure it out.
I think the best way to describe how we live each day with our 3 1/2 non-verbal Sam, is to say imagine your infant never reached certain milestones, and you just kept one foot in the infant phase through the years. Pointing? Nope, not there yet. Sam didn’t learn the pincher grasp until about 6 months ago. His fingers always did the sweep motion to pick something up. Oh, and I don’t count his aimless pointing with his middle finger as pointing. I like to think he secretly is laughing at making us look like a trashy set of parents that thought teaching him that would be funny. Turns out, that’s pretty normal (or so his teachers say to make us feel better).
So he doesn’t point, and he doesn’t nod his head up and down or right or left. He can’t say what he is trying to tell us he wants. When your child was an infant, how did you know what they needed? You went through the mental list in your head right? Eventually, you hit upon the issue and managed to give your child that basic need or want that they had. We live that every day with Sam. His needs and wants are still so simple and basic. He doesn’t need or want much to be happy. Not gonna lie, sometimes this makes me like him more than his sister….kidding….or am I???
Now even though he doesn’t need or want much to be happy, that doesn’t take away the trait he has that keeps him singularly focused on one particular object at certain moments. If he can’t REACH that object….well that’s where the fun begins. Just last week, I noticed Sam sweeping his hands across the tops of the counters, trying to get something. This wasn’t out of the ordinary, Sam does this kind of thing all the time out of boredom, and Derek and I have learned to just keep the counters mostly clear. However this particular day, I watched him get frustrated as his focus stayed on a object I couldn’t see. I knew he was getting frustrated because he had both hands in his mouth, and was scrunching his body together in the center while making a wailing sound. He didn’t try to get me for help, or turn in my direction to get my attention. He stayed in his little world, frustrated that he couldn’t get something he wanted.
I walked over to him and started picking up things to see if it was what he wanted. With my hand on his shoulder, I held up a picture “This?” I said, to which he wailed louder and hit out of my hand. Next, a bag of goldfish; slap. A straw; slap. We did this for a good 45 seconds. Finally, I picked up an light blue colored marker cap. “This?” I repeated. Oh. My. Goodness. Sam started jumping up and down, waving and flapping his hands joyfully, smiling the biggest smile as he reached up for the marker cap. The most unimportant and meaningless item to me, was the only thing that could make him happy in that moment. Because no matter what, Sam would not have lost focus on that cap. He wasn’t going anywhere until he got that cap.
The thing a lot of people don’t seem to understand, is that there is no secret language you have with your non-verbal child when they are still young. Sam is not at that point yet where he will use the Picture Exchange Cards or push buttons to let us know what he wants. I wish it was that easy. If it was that easy, we could ask friends to babysit, or feel comfortable leaving him in the church nursery or the daycare at the gym. But it’s not that easy. It’s still a guessing game. And it takes knowing your child to understand that they are frustrated for a reason. They want so badly to be able to reach or do something for themselves, in their own world, that they don’t really think to ask for help. And when they do ask for help, their cues for asking are unique to them and them alone. Speaking fluent non-verbal, is not a skill you can show someone in a quick “how-to” power point. Because the cues are not always the same. To interact with a non-verbal toddler… you have to start with patience and understanding. The sooner you realize that everything they do is for a reason, the closer you are to trying to speak to them on their level. And when you finally break through, and answer a request or provide for a need or want they have, the joy and overwhelming fulfillment you feel from having a shared experience with them; it’s amazing. And so so worth the frustration and feeling of helplessness.
Living Fragile 