For mothers who have disabilities, parenting a young child presents unique challenges—and brings very special rewards for mother and child alike.
Many mothers with disabilities are able to adapt and overcome the challenges of their disability to be successful, loving parents. I know this, because I am one of these mothers. Our message: We are parents first and foremost, and despite our disability, we have the same concerns as all mothers as we raise and nurture our children.
According to Through the Looking Glass (TLG), a Berkeley, California-based nonprofit organization focusing on assisting families in which one or more members has a disability, nearly nine million parents in the United States have a disability. That’s about 15 percent of all parents in the country. Studies also indicate that more than half of those parents are mothers.
The types of disabilities included in these statistics span the gamut of intellectual issues and physical limitations such as paralysis or cerebral palsy. Additionally, some parents have sensory challenges such as deafness and blindness, while others have health issues like arthritis or lupus.
My Story: A Mother with Arthritis
Four years ago, my family doctor diagnosed me with osteoarthritis of the knees. When my daughter arrived in October 2002, I decided to discontinue the medication I was taking for my arthritis so that I could breastfeed her safely. My plan was to wean her when she was six months old and resume my medication then. During those months, the extent of my disease became more apparent. I had pain in my feet, which caused problems with my joints and muscles. I have joint deterioration in my knees, back, and neck. Finally, a rheumatologist diagnosed me with psoriatic arthritis, which is even more severe than the osteoarthritis I thought I had.
Despite the challenges of my pain, I manage to focus on the development of my toddler and enjoy her laughter and play. My experience has prompted me to start a quest for resources to empower parents with disabilities. On that
One of my role models is Trish Day. Her experiences as a mom with cerebral palsy motivated her to establish Parents with Disabilities Online, a website designed to help other parents with disabilities locate resources and gain empowerment.
“The major message I would like to give parents is that the issues we deal with as disabled mothers are amazingly similar to the issues that they deal with. We may do things slightly differently, but we still get the job done,” Day says. “It is empowering to know that having a child is not that different from everything I have already accomplished.”
Another inspiration is Judi Rogers, an activist, author, staff member at TLG, and the recipient of the 2002 Robert Wood Johnson Community Health Leadership Program award—the nation’s highest honor for community health leadership.
Rogers was born with hemiplegic cerebral palsy. When she became a parent in the 1970s, the scarcity of resources available on the subject of pregnancy and parenting with a disability motivated her to write what became a ground-breaking book: Mother-To-Be: A Guide to Pregnancy and Birth for Women With Disabilities. While the title is no longer in print, used copies are available. A second edition, The Disabled Woman’s Guide to Pregnancy and Birth was released in 2004.
Words of Wisdom
Rogers says that other mothers who live with disabilities experience many of the same issues she faced during her early years as a parent caring for a young child. Specifically, parents with physical disabilities often need intervention in three areas as they begin caring for infants—moving, lifting, and positional change—in order to accomplish such tasks as burping and feeding, she explains. “I was able to solve them with technique and being trained as an occupational therapist. The techniques I learned became the way I survived,” she says.
In the course of their work with TLG, Rogers and her colleague Christi Tuleja developed equipment aides that help make it possible for mothers with disabilities to care for their infant and toddler children. Trish Day is one mother who has benefited from some of the equipment that Rogers helped develop. On her webpage, Day provides useful links to adaptive equipment—some provided by TLG organizations—as well as ideas from other parents. TLG’s equipment ideas include a slide-away crib and a special walker with a seat that can ease the task of transporting baby from room to room.
Rogers encourages people with disabilities who are thinking about becoming parents. “There are resources to help mothers with disabilities with that first two and a half years,” she says. “Equipment and special techniques allow parents to have a fuller involvement in their child’s early life.” Rogers notes that after the infant and toddler years pass, parenting becomes more of an emotional and intellectual activity with fewer physical demands.
As their children grew older, Rogers and Day both recall that they were able to help them by teaching day-to-day tasks such as dressing, brushing teeth, and preparing sandwiches. “Even though I had to ask my kids to do more, I gave them so much more in other ways. When you start working together as a team, it builds the child/mother relationship and helps kids with their own development which they happen to really enjoy,” Rogers explains. “We are enabling them to explore their development—and their development begins to flourish.”
Day adds that it’s important to create an environment that fosters your children’s success. “Get them clothes that are not too tight. If they are still learning language, show them how with helping motions,” she says, adding, “My daughter became much more independent at an earlier age than most of her peers.”
Day offers parents with a disability this encouragement as they consider having a child: “No human baby I have ever heard of arrives with built-in expectations about how you will parent. You may do some things differently, but the baby will not know the difference. The baby is going to accept whatever you do as normal.”
Rogers agrees. Her daughter, Anya, who is now in medical school, credits her mother with being a strong role model.
From my own experience, I offer this advice: Learn all you can about your disability and how it impacts your health. Take that information and make educated decisions that positively influence the development and welfare of your children. Being a mother is a unique balancing act for women with disabilities. We must remember that taking care of ourselves is taking care of our children. And, as Trish Day says, “If you get stuck and have concerns, there are resources available to help you. You’re not alone.”
- Health Promotion for Women with Disabilities: A website designed to provide women with disabilities information on good health promotion.
- Parents with Disabilities Online: Founded by Trish Day, this site includes links to comprehensive resources including information on adaptive parenting equipment, an e-mail listserv offering peer support, on-line magazines and periodicals, and helpful stories about parenting, written by parents with disabilities themselves.
- Through the Looking Glass: Based in California, TLG is a nationally recognized information and resource clearinghouse for parents with disabilities. The center provides information, resources, publications, and training concerning parents with all types of disabilities.
- Arthritis Foundation’s Parenting Pages: A section of the Arthritis Foundation website includes articles on becoming parents and raising children successfully.