There is no solid cure for autism. There are methods, tools, programs, resources, medicines, etc. to make the life of a person living with autism, better for them and their family. As with everything, what works for one, may or may not work for another.
When you have a non-verbal child, you are desperate for a way to improve communication. In 1992 (going way back), all evaluations listed Jacob as extremely low functioning with an expressive language of a five month old (approximately). He would communicate by bringing an object such as a cup, video, or a book OR by taking you to a item such as the refrigerator, pantry, or car. We attempted sign language with little success.
That year, when Jacob was 12 years old, we heard of a tool called Facilitated Communication.
We made a crude letter board that Jacob used to communicate. Lightweight and easy to manage, we actually had two styles:
These are some of the conversations I documented in the spring of 1992 before the above article was written. The capital letters show when he pointed to a letter on his board. Otherwise, he pointed to a word or phrase on the board.
Mike (M): “Jacob, what do you want?”
Jacob (J): G E T V I D E O
M: “which video?’
J: S E S A M E S T R E E T
M: “which Sesame Street?’
J: no answer
M: “Is it Four Exciting Adventures?”
M: “type it”
J: F O U R E X C I T E A D V E N T
Terri (T): “Jacob, what do you want?”
J: I want D A D D Y S T A Y A Z G H Y
T: “Jacob, I didn’t understand the last word, tell me again.”
J: I want S E S A M E S T R E E T
M: “Jacob, Papaw is in heaven and someday I will be and you will be, too. In your mind, do you want to give your life to the Lord?’
M: “Do you love Jesus?”
M: “Does Jesus love you?”
M: ”What do you think about this?”
J: E X C I T E E X C I T E A D V E N T U R E
M: “Tell me what you want?
J: I want eat
M: “What do you want to eat?”
J: I don’t know
M: “Try to think of something and I’ll get it.”
J: C H E E S E S A N D W
Josh (Jo): “He wants a cheese sandwich!”
T: “Jacob, tomorrow is Sunday. Where do we go on Sunday?”
J: C H U R C H
T: “What do you talk about at church?
J: F R I E N D G O D C H U R C H
Jacob had torn a book and was chewing paper. I turned off his TV and told him no video for 15 minutes. Later, he brought me a video.
T: “Jacob, what were you doing that made me have to turn to TV off?”
J: C H E W P A P E R
T: “That’s right, are you going to chew paper again?
J: I don’t know
T: “What’s wrong, why are you biting your hands?”
J: I don’t know
T: “Are you sad?”
J: S A D
T: “Is is because you have to go to school today”
J: S C H O O L
At bedtime, I pointed to the letterboard and spelled, I love Jacob.
J: I L O V E M O M
T: “Jacob, what do you want to talk about?”
J: G R A N N Y
T: “Where does Granny live?
J: C A M H OU S E
T: “Who else lives at the camphouse?”
J: G R A N D A D D Y
T: “What do you like to do at the camphouse?”
J: G O L F C A R T
T: “I love you” (I pointed to the letters as I said it.)
J: I L O V E D A D D Y
M: “Who else do you love?”
J: T E R R I
M: “who else?
J: I L O V E J O S H
These were over a two week period. Were there more? Yes! A lot more. What did this do for us? It opened our eyes to how much Jacob understood. To how much he paid attention. That he had a larger vocabulary than we imagined or had been indicated during an evaluation.
Leading up to our trip to the Facilitated Communication conference, we had friends and family from far and wide praying for us. For Jacob to be receptive, for us to have open minds to see and learn how we could help. I cannot count all the groups who had us on their prayer list. It was a phenomenal display of support.
Did Jacob continue to communicate in this manner? No. At one point, he rebelled. Got tired of the letterboard and refused. Jacob has his own language and good or bad, he prefers it. There have been some other tools we used and currently use. That’s a post for another day.
A while back I slipped into our church and sat by a friend. In conversation he asked, “how’s Jacob doing these days?” I explained that he was home with a sitter and updated him briefly about day to day life. He leaned in and said, “when I think about Jacob, I think about the whole church celebrating him saying, ‘I love you’.”
He was referring to the Wednesday night reaction of the church’s congregation as they were updated on this very answer to prayer. A congregation made up of dear friends, some acquaintances, and others that had never met us. Celebrating our boy and our joy! THAT, my friends is what support looks and feels like.