The Intricacies of Communication
While watching a Sesame Street video last night, the boys demonstrated once again how much more they are able to open up, and even communicate, when talking to their special “friends” (aka the characters from various shows and movies they love to watch) than when attempting to engage in the world with other people. This is especially the case with David although over the last couple of years, we’ve been finding more and more ways to use the various characters, lines, movies, and even exact scenes, to reach into David’s mind and help pull him out and use that vast collection of memorized lines to communicate. As a result, David’s speech and communication has grown and though he still heavily depends on various combinations of memorized lines, scenes, and even character personalities and actions, he is slowly growing in his ability to communicate with his own words and emotions.
As a result of this, time and time again, from those who have just met David, or have known him only in brief moments here and there, I hear the familiar comments about how he doesn’t seem like he has Autism, he talks too well to be severe, and am I really sure that he struggles as much as has been said? Aside from the reminders of the team of doctors and specialists from whom came the diagnoses and information, the answers to these, when I am up to dealing with the conversation that tends to follow, always leads to the extent of pointing out to them David’s intense memorization skills and the way he seemingly instinctively focuses them on studying, learning, and memorizing the world around him as he feels connected to it. This often means the bulk of what he takes in is from listening to mommy have a conversation with someone, trailing behind a fellow kid until said kid gets tired of him being there, or from watching one of his favorite shows for the umpteenth time; centering in on a scene that connects with how he is feeling at the moment or that captures his specific interest for one reason or another.
In turn, when he believes he hears one of his well memorized lines or scripts being said or “acted” out, he will respond to it. Sometimes with direct quotes, often with a mixture of quotes, and sometimes with a learned or “trained” response that he’s practiced before with me or others (the latter is how most of our videos are made with him when I am trying to get him to “talk to” his DogForDavid fans and friends). Occasionally he will bless the listeners around him with some original speech, completely his own. I have to admit that can be a delight to hear for me when it happens. : ) No matter which method he chooses to use though to respond (if he responds at all in the first place), it isn’t always guaranteed that he truly understands the meaning of the words he’s saying and/or the body language or other actions he decides to throw in along with them. This has led to many a humorous situation as well as many an embarrassing one to be quite honest. The latter especially when he says the wrong thing at the wrong time without realizing it around someone who has no idea what is going on. I’m still learning and collecting “how to smooth things over again” skills to help in those moments. 😉
While having a conversation with my mother-in-law last night about David, she was telling me how she had picked up on the movies and scripts and how David uses those to connect and communicate. She then reminded me of a story I first read about a couple of years ago, about a young boy who fixated on Disney movies and whose family found a way to use that to break into his world too and open the lines of once closed communication. Once they started seeing success, they too started hearing the comments about how patients with Autism as severe as his weren’t supposed to be able to do what he was accomplishing with the help of his Disney movies connection. My response? Pretty much the same as the dad’s from the story. The potential and ability was always there. It is for every child. The trick is figuring out the way in and a way for them to let it out.
I thank God often for blessing David and me with that precious key and connection. I know all too well that it isn’t so easily found and used. I also thank him that David found a voice. Even if it is still pretty much 80% scripts and echoes, it’s still verbal communication. I still get to hear his precious voice that had once fallen so painfully silent for so long. I understand deeply what a blessing that is as well, as his communication breakthrough could have easily stopped at body language or sign language like it does for so many. No matter how precious this all is though, it doesn’t take away the very real facts behind his diagnosis of severe Autism.
David has a lot of challenges, delays, and barriers in his life and path; some of which will undoubtedly be with him through out his life. Even his communication is still considered delayed and marred with difficulty and uncertainty because he still too often demonstrates that he doesn’t completely understand over half of what he says and/or that he can’t understand what’s being said to him. Like for instance, when you see him fall and clearly hurt his arm, and you ask him if he’s ok. Sometimes he will say “yes” and then quote through his tears a line from a recently watched character who got hurt, rarely getting the right location in the process even though he can point to the hurt arm. Other times, he will say “no”, but when you ask him where it hurts it becomes a 50/50 chance of him actually answering you vs him lapsing into some random quotation from a familiar and comforting script (usually something from Thomas or a line or two from a Disney song) as he wipes back his tears.
One thing though has always been, and always will be, completely clear and sure in David’s life. How much his precious little self is loved and cherished by his mother. He has had my heart from the day I first saw his tiny heartbeat register on the sonogram screen, and he will always have all the love, help, and support I have within me to give.