A DIFFERENT KIND OF JOY
When a child's difference is Down syndrome, a family's goal remains the same—happiness!
Photography by Fran Collin
They were a typically upbeat couple awaiting the birth of their second child. But for Anne and Joe Majsak of White Plains, New York, their "dream of a perfect baby" met a stark reality. Within hours of their son's birth 16 years ago, doctors told them they were "95 percent sure" the baby had Down Syndrome. More tests would be run, the medics said, but there were unmistakable characteristics: certain facial features, low muscle tone, the simian crease across his palms. "Some parents aren't told for several days, but there's no easy way to break the news," says Anne. Even now, years later, Anne remembers holding her newborn as she found herself wishing the hospital would burn down "with the baby and me in it."
She and Joe struggled to accept the situation. "We have a postage-stamp size of a backyard, and Joe was out there trimming everything in it," she says. "That was his way of coping." He also read books about Down children, but Anne, at first, couldn't bear to look at them.
Her trauma was compounded by post-partum depression, as well as the care of their three-year-old. "Carrie kept asking, 'Why is Mommy crying so much?'" Anne tried to nurse baby David, but "stress got all bound up in it." She gave up after a week. "It was all very difficult, but you get through it."
As she cared for David day after day, she learned, she says, that she could "love him to pieces." When he was two months old, she took him with her to a support group for parents of Down children. "You need a safe place where you can let your hair down and ask questions," says Anne. Surprisingly she found laughter amid the tears. "By the end of the meeting we were joking about putting Velcro on our shoulders to keep the baby's head from flopping."
Anne became pregnant two years later. But when Emily was born, David didn't take well to the arrival of this newcomer. "He was late with walking and talking," she says, "but sibling rivalry wasn't delayed!" As they grew up, the two children "fought like banshees," says Anne. "She's had to grow up in his shadow."
Explains Anne, "Any mother tends to cater to the needs of her children, but his needs are different. Emily says it's not fair that he's allowed to watch more TV than she is. But he doesn't have as much after-school life as she has. He's struggling more than the typical kid, and I know the frustration he's going through. If I wake up at two in the morning, it's David I worry about."
But she and Joe refuse to pamper him. "He has to make his bed, fold laundry, help with the dishes. The hardest part is getting him to clean up his toys," she says. He isn't given permission to misbehave either. "If he gets angry and yells at us, we tell him to go to his room."
Every three years David has to take psychological tests in order to qualify for financial aid. (Down children are entitled to federal support.) They include I.Q. testing, plus ones for adaptive skills, such as how he manages daily activities like getting on and off a bus. Anne says he functions much higher than the tests indicate. "He has excellent coordination, but the tests are mostly verbal, and his speech is terrible. He's sixteen but has a vocabulary of about 300 words. He can put three or four words together, but not necessarily in the right order. He doesn't have the language in his head. Sometimes we 'sign' to him. He's skilled at making his wants known, though! He'll push us or shove."
David attends the local high school where he's in a class for children with special needs. "He can read but not retain what he's read or answer questions," says Anne. "It's frustrating, because he gives back so little that we're never sure how much he knows. Although he does know how to count coins, he doesn't understand how to make change with them. But he loves to write and make lists. At first it was the names of wrestlers; lately it's things from Lord of the Rings.
"He's a tough one to teach," says Anne, "so I thought: let's have some vocational training. The school's given him a job cleaning things in the weight room. He knows all the weights and how to use them."
He has difficulty spelling, too, but she encourages him by saying, "You know how to spell that word." Then he often can. "We never know when we're pushing him too hard or not enough, but we keep pushing. You can't lower that bar of expectation too low or he won't achieve."
Physically he's a "big strong kid," she says, and doesn't have the cardiac problems that so many Down children have. "His heart is fine and the only medication he takes is synthroid for an underactive thyroid. He's had a lot of ear infections but so did my youngest."
Looking for "every avenue that will interest him," they encourage David's love of sports. He's taken part in the Special Olympics six times, most recently speed skating. "All the kids come home with medals, and he's very proud of his. He knows the difference between gold and bronze, but it doesn't make any difference to him." He's also in the school's "Pioneer League" where he plays indoor soccer, floor hockey, volleyball and basketball, in addition to being on the ice hockey team. Anne herself works off tension by playing ice hockey with a group of mothers. Recently her team played David's. "They could have given us a run for the money!"
David's classmates accept him and he "saunters into the building as if he owns it, like an adolescent." But encounters with others can be difficult. "Down kids wear the disability on their faces. People see a floppy walk. Then as soon as David opens his mouth they say, 'Oh!' Some days a remark sets me off, other days it doesn't. When kids ask 'Why can't he talk better?' I take it as a teaching opportunity and try to explain, because the more they get comfortable with someone who's different, the better they can handle it." It's a "two-way street" that will benefit David in the future, she points out, because these are his future employers and neighbors.
Although some marriages sink under the weight of a disabled child, Anne believes that because she and Joe have "been there for each other," it's made their marriage stronger. Joe, who's an insurance underwriter, also relates "beautifully" to his son. Says Anne, "They both have the same sick sense of humor." A favorite comedy routine of David's is walking into a wall, falling down, pretending to be hurt and then lie there giggling. Joe says, "I spent my teen years walking into walls, too."
With a disabled child, she says frankly, you need to be aware of the future. They're hoping that by the time David's in his mid-twenties or thirties he can be in a group home. "People in those homes have full and active lives," says Anne. (Medicare pays for the cost of these homes.) "We hope that both our girls will continue to be a part of David's life. I think they will because they've seen us with him and lived it themselves."
When David was born people told them that Down kids are "so loving." However, Anne didn't allow herself to hear it. "Now I love his innocence and the way he isn't caught up in it's-not-cool-to-kiss-your-mom. When I was putting him on the bus to go to the Special Olympics, I asked him, 'Want to hug your mom?' He gave me a bear hug in front of everyone!"
In life, she's found, "Each person brings something different to the table. What David brings is different, but he's a joy."