SCI Forum Reports
Parenting
November 6, 1996
Laura Baker had been paraplegic (level T7/8) for 15 years when she became preganant with her daughter, now two-and-a-half years old. At the time, Baker thought she had resolved most of her disability issues and was busy getting on with her life, marriage, and career. But when her baby was born, she said, "I suddenly felt disabled again."
Among the few benefits of her injury were painless labor and a quick delivery, but "since then it's been a constant learning process," Baker said. An early discovery was that most changing tables and cribs are not designed with disabled users in mind. Cribs tend to have foot controls for releasing the sides, and changing tables are too low to roll under. Baker and her husband finally found a more expensive crib that she could operate, and her husband built a changing table they could both use.
Another vital piece of equipment was the infant's car seat. Baker needed one she could lift with one hand while grasping one of her wheels on the other side for balance. When she found it, she used the seat to carry her daughter around in her lap, since it solved the problem of how to hold the baby and support her head while operating a wheelchair.
Gary Pearson, who has incomplete C5/6 quadriplegia and twin boys about to turn five, solved the same problem by carrying his babies on a pillow in his lap. Pearson's wife returned to work four months after their sons were born, and Pearson stayed home to care for the children. He and his wife put their changing table up on blocks and added a Velcro(tm) strap, so "when they really started moving around, we'd strap 'em down," Pearson said. He also used a strap in his wheelchair when the children became active enough to squirm off his lap.
When Baker's daughter gained head control, Baker said, "my life was much better. I dressed her in overalls, and I'd pick her up by the straps." However, all that lifting took its toll on her joints. "I'd never had tendinitis before," she said. "Now, I'm taking a lot of Advil(tm)."
When their boys began to crawl, Pearson and his wife fenced off a part of their living room with gates to make a confined play area, "so I didn't have to worry about them getting out of my view when they split up," Pearson said. Because of his limited hand function, he chose baby clothes with snaps or Velcro whenever possible, and found Velcro diaper covers particularly useful -- "we were using 160 diapers a week."
Mark Farrell-Roberts has complete C4 quadriplegia, and he and his wife have a two-year-old son and three-month-old twins (a boy and girl). There are frustrations to being a father with a severe disability, such as not being able to pick up his children and hold them, he said, "but then again I don't have to change diapers." Farrell-Roberts and his wife have found some adaptive solutions, such as strapping a baby to his chest in a cloth sling for cuddling and putting the baby carrier on a kitchen counter to give father and child some face-to-face contact.
With his older son, Farrell-Roberts is starting to encounter frustrations of a different kind. "He's pretty independent. He will not listen to me at times," he said, citing a recent incident in which his son started to cross a street and paid no attention to his father's command to stop.
Baker said her daughter is also testing her limits, "knowing that Mommy can't get to her as fast as Daddy can. If we're somewhere safe, she doesn't listen to me at all. She knows exactly how long my arms are." When their daughter falls down and wants comforting, she goes to her father, because he can respond more quickly. "I know it's just my limitations," Baker said.
Pearson taught his children to obey a certain tone of voice, which he used only in serious situations. "It's almost like training a dog," he said. "To this day, I can say, 'STOP!', and they'll stop." His twins also learned at the age of seven months to help their father pick them up by flopping over his arm when he reached out to them, a response that surprised able-bodied people who tried to pick the children up with two hands. "They had to learn some things that other babies didn't have to learn," Pearson said. "Kids are very adaptable." Even before his sons could walk, they learned how to stand between his legs on the wheelchair and rest their elbows on his knees for a ride.
Baker's pregnancy was easy until the last six weeks, which she had to spend in bed because of pre-term labor. Premature labor was also a problem for Farrell-Roberts' wife, who was hospitalized for the last month of her pregnancy with the twins, and for Pearson's wife, who was put on bed rest four months into her pregnancy. "I had to deal with everything," Pearson said. "It was very maturing, and very frustrating for my wife to see me struggling with all the household chores. So don't wait too long to start getting things ready."