Day 14: Autism Awareness Blogathon (and what would have been my grandmother’s 110th birthday)
My boy has been very slow to talk. He understands a lot more than he can say and the words are coming along but it can be very hard to understand what he does say.
In 2010 when he had just turned three this was the list of words he could say and understand:
- bye bye see ya (said all together)
- shut the door (said all together)
- one two three four five (said all together)
- all gone
- ta/thank you
- lie down
- sit down
This was after I had completed two Hanan training courses: It Takes Two To Talk and More Than Words (which were fantastic) and had been working with a speechie on techniques to help support his language development for a year.
I kept adding to this list as his vocab expanded. There was never going to be a big language explosion with him, just slow progress. These days I’ve got no idea how many words he can say and/or understand – a lot more than 15.
I’d heard about echolalia – where they repeat what has just been said, or a phrase that they enjoy the cadence of or quotes from movies or books etc. They are echoing what has been said word for word. I would have been thrilled with an echo back then. I remember working incredibly hard for a few months to get him to say ‘more’, but L would just gaze back at me, smile and wait to be given more. We got there in the end though.
So now, as you may have guessed, he is echolalic (good word hey?). His version is to say what has just been said (no movie quotes etc). He doesn’t speak particularly clearly and tends to run his words together. It’s as if he likes the melody of the sentence, not the individual words. He does understand the meaning of what has been said, but when he echos, it’s not so that he can process the message. He’ll say it over and over again and if it’s a question he’ll add his answer.
‘Do you want a cup of tea?’ I ask him – ‘doyouwantacupoftea ok’ then repeat, repeat, repeat.
This could potentially drive you insane. As it happens many, many times a day. But last year at the annual foster carer’s conference, the key note speaker was a compelling and charismatic woman called Robyn Moore and she makes a difference to my life every day.
Robyn is, amongst many things, the national patron of the Make A Wish Foundation here in Australia. But it wasn’t her work with children that made the impact on me that day. It was the story she told about her mother.
Her mother had Alzheimer’s and lived with Robyn’s family until she died. Living with Alzheimer’s can destroy family relationships as personalities change, as memories dissipate into thin air and the same question gets asked many, many times. So Robyn knew she would need to find a way to ensure that she could continue to feel the love for her mother that she had always had.
She came up with the ‘First Time’ technique. The idea is that when your darling mother (or son) asks you a question, that you answer it as if it was the first time they had asked it. You answer it with love in your voice.
It’s amazing how this technique has helped me. I find that my frustration levels decreased significantly. He can ask me if I want a cup of tea till he’s blue in the face and I can answer with love.
I don’t have superhuman patience, I can definitely lose it when I have a tough day, but thinking about L’s language, the daily challenges he has, it’s really the least I can do to have a compassionate and loving response.