Psychology professor Rhoda Olkin hesitated before she requested her teenage son to take out the trash.
“I was reluctant, at first, to ask him because it is physically hard for me. But then I realized that teenage boys all across America are taking out the kitchen garbage and I got over it,” said Olkin, who had polio and is a national expert on parents with disabilities.
As the principal investigator of a three-year study of parents with disabilities and their adolescent children, Olkin understands such concerns firsthand. And the study results should be encouraging for parents with disabilities who worry that they’re making excessive demands of their teens: Her study found that teenage children do the same number of chores, have the same number of friends, and keep the same bedtime schedule as teens whose parents don’t have disabilities.
Olkin said, “Parents with disabilities raising teens are more like than unlike parents without disabilities.”
Michael Von Hatten of Austin, Texas, has spinal muscular atrophy and is the father of high school freshman Angela.
“Even though I am disabled, I have a lot of normalcy within me. I do normal things or even some that are beyond normal,” said Von Hatten, who directs an adult church choir, sings and plays guitar before hundreds of people, and recorded a CD that’s sold online.
Angela is a “good little roadie” and helps him set up and tear down his equipment when he performs.
After 24 years of working for Southwestern Bell, Von Hatten recently retired and is a stay-at-home dad. Balancing his daily activities is critical for him. With his limited strength, he gets up from his recliner only four times a day. Von Hatten appreciates Angela’s help with even the small task of bringing him a glass of water so he can conserve his energy.
Now that Angela is 14, she has more responsibilities for helping both her parents. She washes dishes, sweeps, vacuums and cleans the bathrooms — simple chores that have become difficult for her dad.
“She does them, sometimes grumbling, as a teenager will. Overall, she is very helpful and kind,” Von Hatten said.
The teen years are a key developmental phase rivaling that of infancy and early childhood. Profound developmental changes happen during adolescence as teens take the shape of adults in size, sexual maturity, thinking capacity, emotional sophistication, moral reasoning, peer relationships and family relationships.
“Teens think they know everything,” said John Deitrich of Elkridge, Md. “The older they get, the less they need us.” Deitrich, the father of a 13-year-old, has Becker muscular dystrophy.
“We have some issues,” he said of his daughter, Jessica. “As she gets older, my disability is progressing. All the other kids have both parents doing physical things with them. As a dad with a disability, I can’t.
“I know it upsets my daughter that I can’t go outside and kick a ball or ride a bike,” Deitrich said. “My scooter doesn’t keep up with her.”
The teen years are complex. The child is struggling to become an adult. To shape their own identity (a process called individuation), teens separate their thoughts and activities from those of their parents. Many teens somewhat reject their parents.
“If a parent feels rejected, he needs to realize it is normal teen behavior,” psychologist Olkin said. “Remember, lots of teens reject their parents, are embarrassed by their parents, or walk five steps ahead of their parents.
“The problem with parenting with a disability is that it is very easy to hang your hat on the disability.”
Rhonda Brown of University Place, Wash., has Charcot-Marie-Tooth disease and a 14-year-old son. She finds parenting much easier now that her son is older because there are fewer physical demands.
Brown said her son, Averill Olson, isn’t embarrassed by his mom’s condition. “He is embarrassed by the normal teen/mom thing. ‘Don’t come with me…. Don’t kiss me…. Don’t hug me…. Pretend you’re not with me….’
“It’s the typical teen thing, not the disability.”
Linda Stullenbarger of Wheeling, W.Va., a counselor who specialized in treating adolescents for 10 years, agrees that separating from their parents is a healthy stage of teenage development. Sometimes, it’s difficult for a child to separate from the parent because of a sense of guilt or fear regarding the parent’s ability to function.
Stullenbarger, who has oculopharyngeal muscular dystrophy, suggests parents with disabilities continually reassure their children by saying, “I am in charge of managing my difficulty. You aren’t.”
A parent’s responsibility is to be the parent. Parents need to seek support and resources for themselves from adults and not lean upon or allow a child to step into that role.
Children shouldn’t become the parent’s friend, confidante or caretaker, experts said.
“Parents have a responsibility to be supportive of each other, get their strokes from each other, look to each other for emotional fulfillment,” Stullenbarger said.
But even when there are two parents in the family, one may not truly “be there.” Perhaps a spouse frequently travels or is an alcoholic. Just because a person lives in a home doesn’t mean he’s supportive of his or her partner.
In these cases, and for single parents, it’s important for parents with disabilities to have other supportive adults in their lives.
“If the disabled parent doesn’t have adult resources, then the child supports the parent physically and emotionally,” Stullenbarger said. “That situation creates stress for the child, and it should never be allowed to happen. Never.”
When Gail Callina Allen of Marietta, Ga., started falling and losing muscle tone, her doctors were initially baffled. The young, single mother of 8-year-old Alex was terrified. At the time, her closest friends were the families she knew through Boy Scouts.
“They all rallied around me. They took Alex where he needed to go, cleaned my house and made us meals.” Allen was found to have dermatomyositis.
“The toughest years were when I was first diagnosed,” she recalled. Allen turned to her local MDA office and found tremendous support.
Now her son is 15. “He gets irritated, sometimes. I have some days when I can barely get out of bed. He gets really frustrated when I am tired or I can’t go on certain campouts.”
Allen chooses not to attend scouting trips that involve hiking, biking or cave expeditions. She doesn’t participate because she doesn’t want to hold up the group.
Each year, Alex volunteers with his mom at the MDA Telethon, where he works the phones.
“Growing up with MDA, he is more compassionate to people who are different,” Allen said.
The more parents know what constitutes normal behavior, the less likely they are to take their teens’ growing pains personally.
“I think you have to be a bit more creative parenting with a disability,” said Jerry Ferro of Casselberry, Fla., a mental health counselor and rehabilitation specialist. “Kids go through the same stages of development, whether their parents are in a wheelchair or not.”
Ferro, who has spinal muscular atrophy, adds that it’s also easier to ignore a parent with a disability.
“The worst thing a parent can do is become alienated from your child. When you run into a wall with your teenage child, you’d better try and negotiate around it,” Ferro said.
The father of two teenagers, Ferro gives the example of asking his 16-year-old, Sheri, to clean her room.
When the room doesn’t get cleaned, the parent’s natural inclination is to get frustrated, ground the child and turn away. The problem, the dirty room, is still unresolved.
Ferro suggests talking to the teen. Maybe she just needed help organizing the mess, or assurance that the request is serious.
“The temptation is to get into a battle with your kids. If a parent is having difficulty, get the help you need rather than writing off the kid,” Ferro said.
Families sometimes need assistance from a counselor or therapist.
“My personal bias is to look for a counselor with a disability. I believe it makes a difference. They understand what you’re going through,” Ferro said.
Raising a teen isn’t easy — for any parent, disabled or not. The teenage years can be a turbulent time for families. Teens need their parents to maintain a relationship that affirms their increasing maturity. A supportive home environment and a network of caring adults are critical. Parents, disabled or not, are a powerful influence on their teens.
In the United States, 18.4 million parents have disabilities and 4.7 million of them have teenage children. The good news for parents with disabilities is that they aren’t very different from parents who don’t have disabilities.
It’s OK to ask teens to take out the trash. Teens need to do chores. The bad news is, most of them will grumble.
The Parents with Disabilities and Their Teens Project was funded by a grant from the Department of Education’s National Institute on Disability Rehabilitation and Research (NIDRR).
The three-year study was conducted at Through the Looking Glass (TLG), a Berkeley, Calif.-based agency that has served families with disabilities since 1982.
TLG has historically studied parents of infants, toddlers and younger children.
“Studying parents with teens was a logical next step. The younger years are more physically intensive, but the teenage years are intensive in other ways,” said study coordinator Rhoda Olkin, a professor at the California School of Professional Psychology in Alameda, and a staff member of TLG.
The goal of the study was to gain further knowledge about the lives of families raising teens between the ages of 11 and 17, in which one or both parents have a disability or deafness.
A national survey was developed for parents with disabilities and their teens, and a comparison survey was sent to parents without disabilities and their teens. These surveys were distributed to approximately 500 sets of parents and teens.
While the study found that teens of parents with disabilities do the same number of chores, have the same number of friends, and keep the same bedtime schedule as teens whose parents don’t have disabilities, Olkin also noted some differences.
“People with disabilities are more likely to live below the poverty line than people who don’t have disabilities,” Olkin said. Her study found that families with a parent with a disability had incomes of $15,000 less per year than families without disabilities.
“People who live in the exact same neighborhoods, go to the same schools, shop the same stores, pay the same mortgage or rent, are getting by with less while living under the same conditions as their neighbors,” Olkin said.
She also found that parents with disabilities are less likely to be employed full time or part time, which partly accounts for the income difference.
“The combination of working with a disability and parenting with a disability is a significant stressor because there is insufficient support in either arena. Putting them together is very difficult,” Olkin said.
A summary of the project report can be seen at www.lookingglass.org.
Bigger than the Sky: Disabled Women on Parenting, Michele Wates and Rowen Jade, eds., 1999, The Women’s Press, London
"Normal Is What You Make It" (parents with disabilities), Quest, December 2001
Parenting Classes for Parents of Children With Special Needs and for Parents With Disabilities: A Trainer’s Manual, Christine V. Horner and Judson H. Morris Jr., 2000, Family Service Spokane, (509) 624-7998
Parents with Disabilities Online
This is home of the Parent Empowerment Network, an e-mail community of parents with disabilities and others.
Raising Teens: A Synthesis of Research and a Foundation for Action
This Harvard report reviews more than 300 recent studies and identifies core actions for parents and caregivers.
Through the Looking Glass
This national center offers research, training, services and other resources for families in which a child, parent or grandparent has a disability or medical issue.