27 February, 2013

Tell Me A Little Something

Jake is considered non-verbal. I used to say pre-verbal, but then I realized that was just as insulting, and probably less accurate, since I do not expect him to speak in a clear manner that will be medically or academically recognized, and quite frankly, communication has always been the goal, not speech. But he does say words occasionally; they pop out of nowhere, and they are clear and relevant, and almost always said with a wit that indicates he has a lot going on inside that big brain. He responds to people speaking in Spanish, at about the same level of interest as when he is spoken to in English, so that makes him non-verbal bi-lingual, which is great, because it would be nice to have someone in our house be fluent in Spanish. Whatever way you call it, Jake does not share his thoughts in spoken sentences.

So I do my best to hear my son. I listen to the way he is tapping his hand on the counter to know whether he is bored or wants more of something. I hear him shuffle through the night around his room, having had his blankets fall off the bed, or become too entangled for him to wrap them around his body. And when I cover him up again, hoping that the fleece blanket will stick to his fleece pajamas, I can hear his "thank you", said with his own little chirp, that tells me he is happy and that is all that he needed. I know what joy sounds like. It can't even be typed, but there is a sound that Jake makes as he is set free from the house and let loose upon the sunshine of the day. That sound makes everyone smile. We know what "happy sounds" are. We look forward to the "doot doot dooot doot" part of the evening lately when he wants to wrestle on the couch, and laughs a lot.

It's harder for me to hear him in distress. It hurts me, several times maybe, once because I am his mother, and I am supposed to feel an ache which calls me to make my child okay when he cries, or he shows signs of pain in his voice. Then it hurts again, not exactly because I am irritated by the shrill sound he is making, but because of the tremendous disappointment I have in myself for having such a low tolerance for this part of his voice; I want it to stop because I can't do anything well while it happens, including finding a solution to soothe his urgency. And I am hurt again, because I have not figured out a way for Jake to communicate his needs more efficiently, and thus feel I have failed him. And then again I am pained when I realize that I have made his distress all about me, when no matter what I am feeling, it must be immeasurably worse for him not to have a way to communicate what he needs to me, or be physically able to fix his issues on his own. Distress is hard, but we are working on it, working on asking the right questions up front: "Does something hurt?" "Is it your body that hurts, or your feelings?" "Do you want medicine for your head?" And generally, perhaps because there is better incentive, Jake answers by touching my hand quickly so he can get what he needs.

What's interesting is trying to figure out how to hear him in a regular moment... not one of great joy or sadness; it's difficult to understand his side of the conversation when he is just being. When he is quiet in the car with me, I am often quiet too instead of asking him questions about his day which I know he cannot answer. I don't narrate the world around him as I did when he was a tiny boy, and everything was new. So we ride in silence, or sit in the quiet house when it is just the two of us. Most people don't think of me as the quiet type, but I admit that being alone with Jake can be so very calming because I am not talk -talk -talking the whole time.

It is always a relief when we figure out, in retrospect, what Jake has very clearly been telling us. We went to a restaurant the other day with Descartes' parents, and as we were getting settled, Jake half stood up, and made several rather large noises. He was reminded to use his "quieter voice" inside, but he insisted once more on calling out. That's when we saw Papa turn and walk towards us and his seat. He was joining our table, and had walked past us. Jake had seen him as he passed, and began calling out as he headed for the door. We had missed him, but Jake hadn't. Once we understood, it was so obvious that he had been calling out, "Here! We're here!" Jack sat happily, for the rest of the lunch once we were our little group again.

We all had a good laugh, and apologized to Jake. I find myself apologizing to him a lot, for not listening, for misunderstanding, for not understanding at all. I'm hoping that he will continue to know that we are all trying.

I know we approach his sounds and behaviors with a different level of respect than we used to. I expect that he is trying to communicate something when he comes to me, because it is obvious to me now, that separating himself from whatever he was doing, so he could be right next to me is intent, and if you can't really call out , "Hey Mom. I need you over here." you would need to walk on over. So when he takes my hand, I go where he leads me... I am excited to know what he wants to have happen next.

At a busy toy store last week we wandered the aisles looking for the perfect gift to give to a little boy. Rows of books, and stuffed animals, toy trains, play structures, and tricycles, this place has it all. After about half an hour, Jake extracted his hand from mine, but did not shoot away in escape mode. Instead, he took my hand, and I told him I would go with him where ever he wanted. He very calmly led me to the back of the store, to an aisle we had not walked down, but to a section you could see from where we had been looking at games earlier. It was a row of car seats. He walked over to the largest one, and started to sit down, or pretended to, or something. I asked, "Are you trying to say you want to leave now?" He said, "Yea-aHHHH." and I congratulated him on such a smart way of telling me without running towards the door, or throwing himself down in a way that would get us to leave quickly.

I looked over and a young clerk had been watching us, gawking really, but I caught her eye, and said, "He doesn't really talk much, but I think that was a very effective way to say he wants to leave, don't you think?" She let her jaw drop a little, and said, "Whoa. Cool."

Yeah, that's what I thought too:

Whoa. Wow. Yeah. Cool. I can totally hear you.

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