Not to paint a depressing picture, Ben is not profoundly unhappy, but I do want to paint a realistic picture, and that is one where, often, Ben is alone: alone in his room writing calendars or birthday cards to imaginary friends, alone in a big room of people where everyone else is engaged in fast and furious conversations, alone with this thoughts, his feelings because they are trapped inside his mind and heart, struggling to get across the twin barriers of Down syndrome and an oral cavity physiology that makes it very difficult for him to articulate anything slowly enough that it is comprehensible to another person, and yet fast enough that he is included in the conversations around him.
I think of how often little things bother us as people, little things make us doubt ourselves or doubt the meaning of something someone else said. Then I think of how often we turn to a friend, a spouse, a family member for that quick reality check about the little thing that bothered us, and how often that other person reassures us that everything is as it should be, that there is nothing to worry about. I think of how well that settles many a doubt, and how alone, scared, angry, or unsettled we would feel if we did not have those little reassuring conversations.
And I wonder how it feels to be Ben, Ben who can see and hear everyone else producing those many words, who can see and hear others receiving equally many words back, who perceive so keenly how much attention is bestowed on those who can converse back and forth. I wonder what it feels like to WANT so desperately to do the same, to talk and talk, and yet, so much of the time when he tries to do just that, it ends in frustration. Frustration because the other person inevitably does not understand the words produced, frustration because the other person wants clarification, frustration because the words will not exit the mouth and instead a stream of stutter ensues, that frustrating angering stutter over which Benjamin has no control.
And so, he turns inward, away from others, into his imaginary birthday parties for his stuffed animals who every morning turn 2, 50, 900, and sometimes 55, like his mom and dad are. One day last week, he took a ream of printer paper from my office and wrote happy birthday on every single sheet in large green letters. (That was the Sunday I was gathering papers for my tax accountant).
He also recycles birthday cards people send him, and rewrite in black ink over the original writing: Happy birthday, Ben the dog. Or Ben the cat, or Ben the Fox, or Ben the Koala, or Ben the lizard. You get the picture. Every single stuffed animal is named Ben. And he is their dad, and they are all his sons. The theme here is a recreation of that which he wants just as much as anyone else, independent adulthood and a family, and the birthday theme -- Well, he loves celebrations, he loves events where the focus is on him, and where can he find that more intensely and consistently than on his own birthday?
That is not to say that he does not love other people's birthdays just as much. He knows how to write cards, he knows how birthdays go with cake, candles, and presents, and so, celebrating the day of someone else is equally satisfying because he knows what to say, how to behave, and which components are appropriate for the day.
Most of all, I think what I am saying here is that Benjamin for all that he seems content with his day program, his afternoon programs, and his home life, struggles with his identity as a person with Down's relative to his siblings who have all moved away and are independent, something Ben also wants. He struggles to connect with new people in his life to replace the gaping holes left behind by siblings, who perhaps more than anyone else, understood not only his few spoken words, but also his gestures, his body language and his immediate needs in almost any situation. -- His rituals (birthdays and calendar writing) have developed from his need to create comfort in a world where he feels both lost and left out too too often.
As his parent, for all the joy he brings and for all the good loving times we have at home and when we are out in the community, I feel a keen loss in my own limited abilities to connect with him. I remember trying to read books to him, basic picture books or first or second grade readers where we take turns, BUT it is difficult for him to focus his attention on those. They do not satisfy. Neither the pictures, nor sitting side by side taking turns and flipping pages. They don't satisfy because he does not like to read to me, it frustrates him because of the stutter and the incomprehensibility of his speed. It does not satisfy him for ME to read aloud to him either, because it is a one sided conversation where he has no input.
What actually works best in providing him with emotional support and a good time is playing games. He seems most contented and engaged with playing Sorry or Monopoly Jr or something similar because he knows the rules better than anyone, and he knows the words one says during the exchanges in a game: "your turn", "1, 2, 3, 4, 5, 6, 7", "Sorry", "2 dollars", or "Jail". The game is unpredictably predictable, and he accepts losing, getting knocked home, or set back in some way. We play, and even if, for example, in Sorry, he wins, he insists that I play all my pieces till they are all done, and then he declares that I win too. -- The game structure is a mini-life situation that he manages because he knows every rule as well as I do. We are playing on an even turf. We are both equipped with all the vocabulary and the abilities to clearly articulate all words needed for the situation.
When the game is over, we congratulate each other, assure each other that we are both happy, we pack up the game meticulously, putting rubber bands around cards, putting playing pieces in plastic bags. The lid is put on the box and the box is put back on its shelf. All is done in an orderly fashion. Closure is as important as the game itself. Signaling the beginning and ends of events with Ben helps him cope with when an activity is over and when a new activity may begin. Doing the same clear ritual for putting the game away helps him transition through the idea that we are done and prepares him for the next task.
When, as on occasion happens, a game is interrupted, incomplete, or if we suddenly have to rush out the door and don't put the game away nicely, he can get profoundly upset, more -- some would say -- than the situation merits. I have had people in the past tell me that there is 'no reason' that such a little thing should so greatly upset anyone.
That perspective (while I share it to some extent -- I am no saint, I can certainly get both frustrated and annoyed with Ben's rituals) is in itself limited. After all, if there were 'no reason', Ben would not get so upset. Nobody gets upset for no reason at all. There are certainly reasons. The fact that I cannot articulate a reason for Ben's upset, speaks more to my limitations than to his not having a reason.
Ben needs rituals and closure surrounding his activities or he feels pushed around and out of control.
And we do too. Imagine your friend coming over to your house drinking tea with you, you have a pleasant time. You walk off to the kitchen to put away the teapot, and you come back, and your friend has left. Her car is gone. --- She omitted the ritual of saying, "Well, my dear, I think it's time for me to get going". She omitted the ritual of waiting for you to come back from the kitchen, the ritual of giving you a hug and letting you open the door for her to leave. -- You too would be upset if she skipped out like that.
We have many rituals in our interactions with our friends and family, weekly, daily, hourly. We expect them to be honored in our interactions. In Ben's world of communication, he has of necessity developed his own rituals, mostly because ours are syntactically, semantically, and expressively too difficult for him to participate in, given his physical, mental, and sensory limitations. -- It is, I believe, our job as compassionate human beings, when we encounter a person with special needs to enter into his or her terms of communications, into his or her rituals, in order to engage. When we do engage, that engagement is largely a recognition that that other person is a human being. When we fail to engage (as I have done and continue to do with many a person who has limitations I do not understand), we fail, at some profound level, to actively recognize the humanity of that person. -- ... like that friend who walks out of the house after tea, without remembering to engage in the ritual of saying good bye.
