He and I have grown very close in the past few years--his eyes light up whenever I go over to my parents house. He's always glad to see me, because we usually do something special together.
Bubba's major handicap lies in his inability to talk. The thoughts are there--you can tell they are--but he just can't get them out.
Despite his inability to vocalize his thoughts, though, he is able to communicate to an amazing degree. Our young nephews are now wanting to learn how I know what Uncle Barry wants when I tell them something he's thinking. They want to be able to communicate with their Uncle Barry, whom they love dearly.
Sometimes they are too affectionate for his comfort though--like when they crawl up into his lap for an extended period of cartoon-watching. He'll stand it for awhile, then gently push them from his lap to the couch beside him and get up and go about his business.
They can come up with such precious comments about his limitations that show they think a lot about him. My favorite one is "I'm gonna buy Uncle Barry a new mouth, and then he'll be able to talk." His inability but strong desire to drive brought about this close second: "When Uncle Barry grows up and learns how to talk, then he'll be able to drive, won't he?" How to answer such as that?
Back to the way he communicates with us...Barry loves to hear his thoughts spoken aloud. You can really tell from his grin when you get it right. Mostly it's a guessing game, but you can look for facial expressions, things he's trying to show you; but, mainly, it's in his eyes. I can almost always look at his face and figure out what's wrong. Mom has occasionally caught Bub and I carrying on a silent conversation across the room from each other--he'll be grinning or will let out a really big laugh, and neither of us has spoken a single word.
Let me give a recent example as to a typical 20-question session with Barry. A few weeks ago, Mom had told him that he wouldn't be going to school the next day, that he was going to the airport with her to pick up a visiting relative.
Well, we three had been there the week before to pick up another relative, and had had a long wait. He didn't enjoy himself--Barry gets bored easily. He was obviously remembering that trip, and was NOT anticipating a repeat, because when I came in the door, he let out his loud Ummmmmmmmm sound that means he is unhappy or troubled about something. So the detective game had begun.
He was holding his lunch box in his hands--I replied "Yes, you have a lunch tomorow"--standard phrase--Bub likes to hear confirmation that things are as they should be. Well, this elicited another Ummmmmmmm at the same time that Mom said, "NO, no lunch tomorrow. We're going to the airport to pick up Margaret"--another Ummmmmmmm. Well, it doesn't take a genius to figure out that he doesn't WANT to go to the airport, he WANTS to go to school.
Unfortunately a conflict with my Dad's work schedule meant that there would be no one there to wait with him for the bus at 9:30 a.m.
So I asked him if he wanted me to come over and stay with him until the bus came, and then I could go over and wait for him after achool and we could go grocery-shopping together. Well, he tells me "yes" in sign language, which should be a good thing, but Barry learned to sign "yes" and "no" a long time ago, and rarely says "no" anymore, even when he means it. Since he also replied "yes" to the opposite option, it really wasn't definite what he wanted to do.
Since he's always liked to GO so much, it seemed odd to us that he wouldn't want to. We settled finally on my being there by 7 a.m., when Mom had to leave, him being up and dressed and ready to go, and then letting him make the choice himself. In the end, everything worked out perfectly. He did want to stay home and go to school and help me shop--sometimes my Bubba can be a bit of "Rainman" in his adherence to routine.
On to shopping--another way we work together so well--each needing the other. He gets his dollar a day allowance (or more), not to mention holidays and money he gets from myself and others for helping us, or just because we want to see him grin.
So his money accumulates. He doesn't spend it very often with Mom at the store. I think it's because he can't con her with those eyes of his the way he can me. I rarely tell him no when he wants something, even when it is the impractical 200 foot roll of Reynolds Wrap that he loves so much. He tears it off in long strips, which he then neatly folds, stacks into a pile and carries to the recycling bin. It doesn't have to make sense--he's my Bubba and it makes him happy.
He has other favorites as well: Nabisco, Tide or most any name brand laundry detergent, Quaker Instant Oatmeal, and--oh, how could I forget--MORTON SALT--a staple on a shopping trip with Barry.
All that adds up to the fact that he NEEDS to shop. So do I, generally once week. So it all comes together well. I myself am in bad health from 21 years of lupus and steroid treatments. I can't do much lifting or carrying because of back pain, so Bub handles that.
I point out what we need, or, if we're not short on time, tell him to get me, for example, one Diet pepsi and one 7-Up, and then watch to see that he gets the right ones.
Due to increasingly severe seizures, his mind isn't as quick as it once was. We all have to remind ourselves to be patient with him. Mixups have to be more frustrating for him than for us. It makes him so happy and proud of himself when he gets it right, though, that I like to give him the chance. I tell him repeatedly "you're the best helper I've got."
This usually brings on a big "Bubba grin"--oh, such a sight. The grin stretches almost literally from ear to ear, his eyes light up and seem to shine, and the expression on his face is so joyous that it really can brighten a whole room. No matter what kind of day I've had, those grins yank me immediately back to HAPPY.
His last bout with seizures took a lot out of him, and he could do nothing but lie around and sleep for days--couldn't even make it to school, the high point of his life. No Bubba grin for days and days--heartbreaking--and then I went over one day and he seemed to be feeling a bit better, so I asked him if he wanted to go for a ride and look at Oldsmobiles (his favorite car and favorite activity) and go by Sonic and get some lunch.
For the first time in what seemed an eternity, that miraculous grin appeared. Oh, how happy I was to see it. I'd begun to despair that I'd never see another--he'd been so far away, and I'd missed him so much.
So, I speak Bubba's thoughts for him and carry him shopping and riding around, while he carries my heavy things and lights up my lfe--the two of us make one pretty good team. Sometimes we seem so close that it feels like our minds are linked--the old "I'm the brains, he's the brawn" kind of thing, but more involved and definitely more special than that. I love you, my Bubba.
published in local paper February 27,
1999, by me! Susan