I missed yesterday’s memory. I was so busy editing the next podcast that I forgot. It got to be 9pm and my brain was tired. I looked at Eva’s photos and said sorry, I’ll make it up tomorrow.
Today’s memory is about realising that communication with Eva wasn’t something I had to forget about. Eva was blind and deaf. Profoundly in both. She couldn’t hear me or see me, although she seemed to have extra senses that allowed her to know when you walked in the room when you hadn’t even turned the light on.
I started hunting for a system of sign language that I could use with her. I found nothing. NOTHING. I kept thinking I must not be looking in the right places. Surely, I thought, there must be a system worked out for deaf-blind people. And there is, but each family, each community, has to work it out themselves. There are amazing videos of deaf-blind people with interpreters showing them what is being said. Some use a hand up to the face of the interpreter to guide them with the facial movements; some use assisted sign where they place their hands over the person who is signing; some use technology to help them. But they were all different. I understand this, because the needs of someone who is deaf-blind are very different person to person. But it still shocked me at the time.
I set about trying to make Eva and I our own language. I drew up a matrix and had all her remaining senses in it. Smell, touch, taste. I thought about the key things I wanted to tell her: that she was about to be picked up, or to have a bath, or to be fed, and I came up with a sign that I could perform on her, or that she could do with my help, and alongside it there was a texture or smell. So when she had a bath I did a backwards S on her stomach. I got her changed on the same sheepskin blanket and repeated the S. Then before I put her in the bath I did the S one more time before I dipped her toes into the bath.
I couldn’t quite believe it when I realised she knew what I was telling her. She knew when she was undressed on that sheepskin rug that she was having a bath. She would wriggle and squirm with delight. Laughing and giggling in anticiation. She had started to lift her chest in anticipation when I tapped her chest three times as I did before I picked her up.
Best of all, she knew how to tell me more. One of her favourite things, the forehead swirl, encouraged her to start to direct me. I would draw on her forehead and then intentionally stop and put my hand over her chest, hovering there. She would reach out and pull my hand back to her forehead. She could do this over and over again. She never got enough of it.
When she was having baths she had also started communicating with me. I would put her hand over mine and splash the water. Then I removed my hand and sometimes she would splash the water again, all by herself.
Parents with non-verbal children ache to hear their children speak. They never get to hear “I love you” from their children’s lips. So any form of communciation I could get with Eva felt like a miracle and something to yell about.