Caleb’s Voice

February 12, 2011

Our nine year old son, Caleb, has Autism and is non-verbal.  I have to continually remind others (and even myself) that although he cannot verbally express himself that doesn’t mean he doesn’t understand what we say to him. It also doesn’t mean that there aren’t things that he WANTS to tell us.  I can’t even imagine how hard it is for him to not be able to communicate.  It must be extremely frustrating to not be able to express his wants and needs or even to just make a comment or observation about everyday things we take for granted like what we did that day or what we had for lunch.

When Caleb was around four or five we discovered that he had taught himself to read and spell and he started using magnetic letters to communicate with us.  We had tried to teach him sign language for almost a year but he showed very little interest in learning the signs. However, he has a fascination with letters and words and so he loves to use his magnetic letters to spell words. He sometimes just spells his favorite words like “editor”, “lighting”, “effects”, and “Dreamworks” (his favorite part of any movie is the credits, can you tell?).  Other times he spells to tell us what he wants and so he will use his letters to write words like “apple”, “cracker” or “computer”.  His fine motor skills are improving and so now he also uses a pencil and paper to write out words or phrases to communicate.

A couple of years ago we purchased an Augmentative Communication Device (ACD) for Caleb.  An ACD is like a small touch screen computer with keys that have small icons or pictures. There are different menus for things like food, clothing, holidays, school, etc. and each of them has icons of things that are in that category.  Caleb can use the keys to build sentences and then when he is done the device will read the sentence for him in a computer generated voice.  He can also go to the QWERTY keyboard pages and type whatever he wants to say.  This has been a great help in providing a mode of communication for Caleb and has really opened our eyes to what is going on inside his head.  We have discovered that Caleb is a very smart boy and he also has a sense of humor. He has found there is a joke page on the ACD and will often tell his therapists jokes to stall for time and avoid work.  The more we see Caleb’s personality the more we realize that he is like most nine year old boys in that he loves to play and tries to find creative ways to avoid work. 

One afternoon my husband, Dwight, was visiting a member of our congregation in the hospital and since bringing four children into the hospital would have created quite a scene I just kept them in the van with me and we drove over to McDonalds and went through the drive-thru to get a snack.  I asked the kids what they wanted.  Drew wanted a coke and fries and Emma and Ethan both decided on chocolate chip cookies and milk. I also ordered french fries and a Sprite for Caleb.  We got our food and drove off to head back over toward the hospital.  Caleb started fussing and whining and continued to let me know that something was not right. I asked him what he wanted and he just continued to kick the seat and whine.  I was driving so I couldn’t tell what was bothering him and I asked the other kids and they couldn’t tell either. I said, “Caleb, get your talker” (that’s what we call his ACD)  “Caleb use your talker to tell me what you want or what’s wrong”.  He got his talker out and then I heard it say, “I want a cheeseburger” and then he added “Please”.  “OK Caleb, we will go back and get you a cheeseburger.” I said with a smile.  After all Dwight had not texted me that he was done with the visitation and so we probably had plenty of time.  I was looking for a place to turn around and head back towards the golden arches and I guess it was taking longer than Caleb thought it should because he grabbed his talker again and I heard, “A hamburger … with cheese”.  I laughed and said, “Yes, Caleb – I know what a cheeseburger is. We are going to get you one as soon as Mommy can get turned around and back to McDonalds.”

Caleb’s ACD has been in “the shop” getting repaired so we have missed it these past two weeks and have had to try and find other ways to help Caleb communicate with us.  He does pretty well with writing so we have used a good old-fashioned pencil and paper and also the magnetic letters so he has some way to let us know what he needs or wants.  This has worked pretty well, but there are times when he decides to find other ways to communicate and they are not always very pleasant for those around him.  He has this piercing scream that he recently has become quite found of.  This scream sound is pretty irritating to listen too especially since my motherly instincts associate screaming with a child being hurt or upset.  However, the more we have charted and tried to figure out the cause of the screaming the more I think that it is not a scream that means something is wrong, but rather an expression of protest  (what the ABA therapists call “avoidance behavior”).  Instead of saying “no” when you ask him if he wants to do something or wants to eat something he lets out this piercing scream (even though he is capable of saying “no” and /or shaking his head).  He will also produce the piercing scream if you try and get him to complete a task whether it be homework, cleaning up his room or some other not-so-fun part of a nine year olds day.  Last week he was in his therapy session and he was doing this screaming sound.  His therapist kept asking what was wrong and couldn’t figure it out so she wrote out on a piece of paper, “What’s wrong?”  Caleb took the pencil and wrote back to her, “What’s wrong with you?”.  “What’s wrong with me is your screaming.”   she replied.  Caleb wrote “no screaming” on the paper.  “Yes, no screaming.” She agreed.  Caleb put down the pencil and the screaming stopped.

These examples have helped to show me that Caleb can engage in a conversation if given the proper tools to help him.  He learns a lot from the world around him and we have to find ways for him to express himself in order to grasp just how much he knows.  I am always thankful for the times when God helps Caleb find his voice by allowing him to discover alternative ways to communicate with us.  I especially enjoy the times when his sense of humor shines through and he makes me laugh.  One cold winter day Caleb came up to me and sat on my lap and as I grabbed him to pull him close and hug him I felt his feet and they were freezing. “Caleb!”  I said, “Your feet are so cold … they are like ice cubes. You really need to have socks on!”  Caleb scooted off my lap, took two steps back, looked at MY bare feet and then looked back up at me.  He then started giggling and I could tell by the look he gave me exactly what he was thinking … Where are your socks Mom?

A few weeks ago when Caleb was in Sunday School  he took his paper and pencil and wrote,  “I love you” and handed the note to his teacher. She smiled and said, “Thank you Caleb. I love you too.”  She took the pencil and wrote back, “I love you Caleb”  Caleb looked at the paper grabbed the pencil and added “Elliott” after his name.  “Yes” she laughed and added, “I love you Caleb Elliott”

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