These are the Signs of our Lives

My friend Debbie, one of our villagers, suggested I write a blog describing the unique way in which Scotty communicates. She felt it could be very helpful to families searching for an effective way for their child to communicate.

It has really been trial and error and different stages of development have required different kinds of communication. Whenever anyone asks me how Scotty communicates the lyrics to the Linda Ronstadt song Different Drum always pop into my head. (Which by the way was written by Mike Nesmith from the Monkees…did not know that!)

♪♪You and I travel to the 

Beat of a different drum…♪♪

Scotty has always marched to his own rhythm…he is a beat off from the rest of the world. Though we walk side by side with this boy and occasionally catch glimpses of the world where he resides we will never hear the same beat…we will never understand his rhythm…and he will never understand ours.
 
As I mentioned previously in the blog post The I Love You Button (link), Scotty’s spoken vocabulary is limited to a small handful of words. His expressive language is limited to Mama, Dada, Bubba, Bye-Bye and something that sounds like “I love you.” He tries very hard to talk and participate in conversations. He tries to imitate any word he hears that starts with the letter “B”. He LOVES “B” words. To name just a few we have had a string of hamsters named Bubba, a squirrel named Bob lives in our backyard, we have a dog named Bonnie, his favorite place to go is bye-bye, his favorite food is a banana, and his favorite drink is beer…root beer that is!

His receptive language is astounding and since he can't filter out an of the sounds around him...he hears EVERYTHING! For example, when the kids were younger our life revolved around a multitude of activities that involved driving the girls and their friends here, there and everywhere.

More often than not the radio was on and the back of our mini-van was filled with chattering, giggling girls all talking at once. Through all that noise Scotty could pick up bits of conversation that we never heard and would let us know if someone in the back mentioned a dog, or pizza, or swimming, etc.…truly incredible.

His ability to communicate comes from a combination of sources. Part sign language some traditional- some made up, part technology, and part dragging us through the house to show us something.

Unfortunately, he also communicates by pinching, hitting, pulling hair, throwing things across the room, and punching holes in the walls. One of his teachers in middle school, Miss Stacey, assured us that all behavior is just a form of communication and it was her job to figure out what he is trying to say. She made this statement calmly and lovingly immediately after he had popped her right in the face. She was one of the good ones…one that God handpicked just for us…a marker in the road to help us and to guide us on our journey.

I have never forgotten this and even in our worst moments I try to remember that he is trying to tell me something. Sadly, more often than not I don't have a clue what it is.

He started signing at about 15 months. His fine motor skills are weak so most of his signs are approximations. His first signs were eat, drink, more, mommy, daddy, please, thank you and help…all of which he picked up very quickly. We tried to figure out how many signs he actually has and came up with the number 100. He has many signs that are the same so we must interpret them contextually. For example, he uses the same sign for bubble, bird, popcorn, fireworks and grapes.

He started making up his own signs shortly thereafter. Movie was the first sign he ad-libbed. He stomps his feet as though he is marching. Why you ask? Because he loved the Jungle Book and his favorite part was when the elephants marched! He quickly added ‘rewind” to his repertoire, back in the day of the VCR, by rapidly rolling his hands around each other disco style. Genius really if you think about it. Einstein couldn’t have done a better job.

Charades. Our life is just one big long game of charades and it can be exhausting! We have very few opportunities to sit down during the day. Scotty constantly needs to take us somewhere and show us something. He can’t say, “Mom the dog threw up on the rug” he has to take us there, usually stopping in the kitchen and grabbing a paper towel on his way. Thanks Buddy!

Even at night when he finally goes to bed he knocks on his door so we can come watch him act out something in the movie he is watching. So every night just as we settle in with a cup of tea and the DVR…we hear the knock/pound on the door...so down goes the footrest on the recliner...off comes the blanket and we make the long trek up the stairs so he can show us that the crocodile is trying to eat Captain Hook, or how funny the Three Stooges are, or he just wants us to sing Bye Bye Birdie with him. (“B” words!)

The last aspect of the communication conundrum is technology. He started out using the Picture Exchange Communication System PECS (link). From there he progressed to Augmentative Communication Devices such as the AlphaTalker (link) and DynaVox (link). He was capable of using them but uninterested. All good technology, but just not for him and they are quite expensive as well as cumbersome. And we always have to factor in his aptitude for throwing, kicking, stomping on, and using any object that is not nailed down as a weapon of mass frustration.

In the last several months we have purchased an IPAD and the TaptoTalk (link)program. There are many communication programs available, but this one seemed a good fit for him and it is also reasonably priced and user friendly. You can start out with something very basic and add on as needed. If you are looking for something I would highly recommend this particular program. It is a layered program and we are able to add our own pictures as well as record over the computer generated voice. My husband recorded a word or phrase for each picture. We have tailored it to the best of our ability to fit his needs. It is extremely difficult to coin a phrase...put words in his mouth. We basically narrowed it down to the following categories: food, play, friends, family, feelings, chores and activities outside the house like church, library, shopping, and restaurants.

Main Screen

Let's Go

Feelings

 We have noticed it has helped with behavior and his constant barrage of questions. For example, when he touches the picture of Steve it says, “Daddy is at work.” If he asks one hundred times a day where Daddy is...I have him go to the IPAD one hundred times a day and answer his own question. We have recently changed a few pictures to say, “Maybe later we can go to the store” instead of “I want to go to the store.” This way we are not making any promises but he still gets to express his wants.

We are so aware that the need to communicate in this boy of so little words is much larger than we will ever be able to comprehend. We often wonder what it must be like for him. Do words and phrases run through his head in the same way they do in ours? Are the words right there on the tip of his tongue? We can all relate in some micro miniscule way I suppose when we struggle to retrieve a word…but for us it is just one word..not all words...for us it is just one time…not for all the time.

We wonder if he talks in his dreams. All of us have had dreams where Scotty is talking, but sadly we can never remember what he said…I am certain it was important.

So, as you can plainly see Scotty has many different ways to communicate and still he is frustrated because none of them, together or separate, are able to help him say the things he wants to say. We are certain that this boy of ours is much more intelligent than any of us could ever imagine.

So we continue to struggle everyday in our attempt to provide him with the words he needs...even with all the ways he has to communicate...we are still the only voice he has.

Speak up for those who cannot 

Speak for themselves;

Ensure justice for those being crushed. 

Proverbs 31:8

**We have had a busy couple of weeks and I have been off on my self-imposed Wednesday blog posting deadline. If you read my blog post from last week you know we had a perfectly relaxing vacation. Perfectly relaxing…words seldom used to describe anything we do with this boy of ours… much less a vacation! Scotty also had some plastic surgery on his lip this week. Right before we left on vacation he tried to give one of the horses a kiss and it nibbled a chunk out of his lip. Lesson learned…horses do not enjoy being kissed on the mouth!