Wednesday, October 26, 2011
My Brother Has Down's Syndrome! (and I love him.)
I got to pick that name, as I was 12 (and very much into the Once and Future King at a Time). My parents didn't know for quite awhile that Mom was expecting a baby. She had me when se was 24 and he was 28, and went into an early menopause, so when I was almost 5 they adopted a 6 mont old baby boy. So when I was 12, and she was being treated for an ulcer, it was a shock to learn that the ulcer had a heartbeat. Dad was nervous about being a Dad to a baby again at 40 and joked that he would have to play catch while leaning on a walker. Then when he was born a week before halloween, there were complications from a blood condition similar to the Rh factor (ABO incompatibility) which had caused me to need a complete transfusion 12 years earlier, and he had to be airlifted to a city 100 miles away for a week stay under a light in a NICU.
My Mom came home to the empty crib and there were tears that hadn't stopped when the community health nurse arrived to try and talk them into signing their baby into the home for mentally impaired people. "He will never sit up, he probably won't ever recognize you. He certainly won't know you gave him up, and you have to think of what is best for your other children."
My Dad didn't anger easily, but he threw that nurse out of our home, the words she had spoken ringing in the sudden stillness, "Mongoloid Idiot."
I remember the joyful anticipation of the birth giving away to whispered conversations and tears and I overheard my Grandma say, "He'll have one tough row to hoe in his life." and I wanted to take all the pain he would suffer and hold it to me instead. I fell in love fast with that red faced monkey baby when we got to pick him up a week later and bring him home.
He was a happy baby, laughing and constantly making eye contact and proved a social master from birth. Then at 6 months, right when he had begun to speak, "MaMa, Ice Cream" coming already. He got sick, and the Dr. tested his blood and told mom to give him fluids, but he stopped eating, and over the weeks she tried to force feed him, forcing baby food between his lips as he cried, and holding his jaw closed until he swallowed, tears on both their cheeks as he fought, and wasted away. He lost half his body weight and then Mom went to yet another Dr. appt., begging the Dr. "If you don't do something, He will die."
The man who had been our family Dr. since my Mom was a child, calmly said, "Wouldn't that be the best thing for your family?"
So then he says he can save the baby, and a shot of penicillin for simple Giardia, or "Backpackers disease" cured him. But he was deaf.
An early intervention preschool in the next town over, taught sign language to Lance and gave me the first taste of the special ed. classroom that would become my career. Then when he was 5, a new surgical technique inserted tubes in his ears and drained the fluid. First he had to be admitted to the hospital and under general anesthesia, have his ears cut off and taped to the side of his head, so they could be glued on again following surgery. That has changed a lot since 1980. His first sound in 4 1/2 years was when he awoke in the recovery room and heard a toilet flush on the other side of the wall. It startled him and he began to cry, but he'd no memory of hearing himself cry and that scared him more, and Mom picked hi up and patted his back and murmured,"you will be fine, it's OK." but the patting and her voice and his screaming ad the Dr. talking all overwhelmed him like explosions of painfully loud noise.
So even 31 years later he is not fond of loud noises, but he had a really hard time for a few years, with indoor things like basketball games or concerts.
Then he was old enough for public school and they wanted to ship him out of the county to a "State School" but the Public mainstreaming law had just passed and my parents stood firm and a class was begun. At first they had to fight for everything. There were a few other kids who came too, and some things were good, but some discipline was things like being locked in a dark closet during lunch for refusing to pick up puzzle pieces.
And when he was 7 he was going down a slide in the backyard as our puppy jumped up to meet him at the bottom. His arm met the puppy's claws and the flesh tore. We rushed him to the emergency room, where the Dr. in charge strapped him to a gurney and began to stitch up the arm. Without pain medicine. Mom and Lance both screamed.
The Dr. Looked at my Mom in all sincerity and assured her, "Kids like this don't feel pain. He's just crying out of reflex." And my sweet Mom threatened to make the Dr. feel pain if he didn't get a different Dr. in there sooner than now.
But attitudes were changing, there was a boy with Down's syndrome on a popular TV show, and mainstream activities like swim lessons, bowling, sunday school, boy scouts and school choir all introduced the town to a boy with a sense of humor, a joy in life, a passion for sports, and an uncanny ability to make people love him. By the time Lance was 15, he started working in a work study program with WalMart and the High School, and when he graduated in 1996, just before our Dad died of cancer, he kept working 3 days a week. And has for 18 years now. The City of Cody has accepted him in amazing ways and he can't go out to a store or restaurant without people saying "There's Lance! Hi, Lance" and he knows everybody.