Every day I try to get out with Mac if it isn’t too cold, too hot, or raining. We enjoy our walks together. I pray and sing and talk to him. Sometimes we are quiet, or he may express his joy…. or annoyance, as the case may be.
His wordless running commentary on life can sound very much like any other monologue; or shall we call it “Mac’s non-verbal soliloquy?”
I answer him back as if I totally get what he is saying, as I often feel I do. I answer him as I would anyone else, “I feel the same way, Mac,” or “Tell me about it, Mac,” or I act like I disagree, “What?! You’re kidding me!” He enjoys this. Sometimes he laughs.
Mac, besides being mostly unable to speak, is also blind. However he does respond to music, and music is a big part of our day.
Besides the recorded music we listen to, I have little songs I sing him, mostly simple little ditties I have made up over time that he likes and that I use for different parts of our daily routine.
Mac has very little sense of personal choice in his life, of course, since everything must be done for him. We brush his teeth, feed him turn him, dress and change him, move him and wheel him around. He can let us know how he feels, in his own way, and we care about that. But he has far less control than we do over the ordinary events of the day.
Routine helps him understand his life and know where we are in the day and what is going to happen.
In general we think Mac understands a lot more of what’s happening than people might think, and perhaps even understands things we don’t. (By “we” I mean his family and myself.) However, anything we can do to help him have more control or understanding of his life and circumstances, we want to do.
Since he is so responsive to music, I decided to make him a “map” of his neighborhood with songs.
What I did was simple. Every street has its own song. I made it a simple song, most of them rounds that I taught my kids when they were growing up; such as “Jubilate Deo.” Each has a short, jolly melody and a phrase that is repeated again and again, easily recognizable.
As soon as we turn on to a new street, I sing its’ song.
If he is enjoying my singing, I sing the song for a while. If he makes the grunting, irritated sounds he makes when he wants quiet, I know to stop. I have informed him of where we are in our walk, and I can quit singing and let him listen to the birds instead.
Other times he crows with recognition and in participation with every song, lifting his chin to the rhythm of the music. He likes when I sing, and I think knowing where we are gives him more freedom to feel like he’s on a walk, rather than just being taken around.
The street he lives on actually has two songs. One song is for when we are going away from the house, and one for when we are coming back. That way, especially on days when he is kind of grumpy or he feels our walk has been too long, he knows we are headed back in the right direction and he is more patient.
I see him calm down and quit fussing when I begin the song that means, “We’re on your street and headed back to your house.”
I have thought for a long time that he understands this “music map.” When I have experimented by singing the wrong song, he expresses the displeasure he often does when his routine is disrupted in other ways. This tells me he knows the songs for each street and doesn’t want me messing that up! Even when we take different routes he seems to know and recognize the street we are on and what song I should be singing.
I think that Mac does have a “music map” in his mind now. I think he has learned about his neighborhood more this way.
Mac is often mysterious. I may not be able to understand what he draws from the street-song plan of mine. But he does “get” that each street has its own song and he knows what that song should be.
It’s one more way for us to connect and communicate.
That’s surely something.
And it adds more joy to our day.
May 19, 2017 at 5:21 am
I love this, Shawn. A beautiful story elegantly told:)