Saving the world.
By Karen Murphy
In the dream he said to me, “I want some cold milk,” and then he walked into the kitchen and sat down on the floor in his customary spot where he waits for someone to get him a drink when he wants one.
I know it was a dream because Eric doesn’t drink milk. I know better than to give Eric milk in his open cup because I know that if Eric drank milk from that cup he would also likely wear the milk, and milk worn for more than a few minutes doesn’t smell as nice as it once did.
I also know it was a dream because in it Eric spoke an entire sentence, one that contained an adjective. And he spoke it clearly.
In the dream no one else was very surprised by this but in the dream I had been away for three weeks and somehow in those three weeks Eric had decided it was time to speak intelligibly, perhaps because I had not been there to interpret intuitively for him the way I have been doing since he was born nearly five years ago.
Eric took these words in and after he turned two he began to grow. He lost the haunted look he had worn along with the dark circles under his eyes. Still toothless, he discovered the joys of applesauce, oatmeal, and pancakes. And he grew and became stronger. He was not large, but he was sturdy.
Along the way Eric picked up a speech therapist. He loved her. She came once a week and played with him. She taught me signs to use with him: more, pancake, sleep, please. He ignored the signs except the one for “more,” which he still uses with abandon.
Spoken speech is hard for kids with Down syndrome. They haven’t got the muscle tone in their lips, tongue, and cheeks to form the sounds that we know as words. They often can make beginning sounds but not ending sounds, because those ending sounds take effort. Try speaking with your mouth half open, without moving any muscles much, and you get the idea of how difficult it is to speak clearly with low muscle tone. Speech therapists have kids with DS practice blowing bubbles, sucking on straws, anything that strengthens those muscles.
When Eric was small one of my denials was that okay, he had Down syndrome, but my kid was at least going to be one of those really high-functioning kids-with-Down-syndrome who goes to college and acts in movies and writes poetry. And for all I know Eric may do those things, but at nearly five he isn’t winning any awards for clear speech. Oh, he talks a LOT. But he’s the only one who seems to understand most of it.
Still, he gets along okay. If we don’t understand him, he’ll cry, “Mah!” and beckon encouragingly, and then drag us along to show us what it is he wants. It took me a couple of months to figure out that “Mah!” meant “C’mon!”
I still wonder about that dream. I have been gone from Eric for about three weeks, so after having that dream today I phoned. Was there a chance Eric really launched into real speech somehow, magically? The phone rang and the answering machine picked up. I was leaving a message when someone answered.
“Eric, are you answering the phone now?” Eric loves the telephone but rarely gets to speak through it to a real person. I’ve only talked to him on the phone a small handful of times.
So, no. No sentences but he does know his mama’s voice on the phone. I will take that.
Still, I can’t help wondering how difficult a road it will be for Eric to communicate with people. I no longer speak heart-talk with him but I do know him intuitively and mostly get him what he wants without him having to try too hard to tell me about it.
He does talk a lot, though. One of his routines involves standing on the top step of his bus every morning, issuing essential instructions to me before he starts his day. He gestures a lot and smiles while saying this, and then he shrugs. I can tell you’re not getting this. I tell you the same thing every morning and you still don’t get it. But follow these instructions EXACTLY and you will help avert global warming and every other major crisis that will ever arise. Also please wash my superhero cape. I can’t complete this mission because I have to go to school, but all you have to do is say “The green turtle drinks at midnight,” to the FedEx guy when he drives by this afternoon. Can you remember that? I’ve told you enough times.
The bus driver and I meet each other’s eyes over Eric’s head while he delivers these unintelligible instructions, and we smile. We have no idea the world is this close to cancer cures and averted crises. Eric simply smiles encouragingly, understanding my lack and forgiving me for it, and gets into his seat to wait for tomorrow when he again has a chance to save the world.
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