Parenting with a disability
Parenting with a disability has its ups and downs, just as it does for all parents. Dianne, a mother with post-polio syndrome, reminisced about the day she brought home her newborn son and faced the difficulties of getting the baby in and out of the crib and carrying him around the house. "I was isolated," she said, "and didn't have many resources or support. I learned the value of preparation the hard way and was better equipped and prepared for the arrival of my daughter three years later."
Silvana, another mother with a disability, said she agrees with Dianne. "No amount of written information can really prepare you for the birth of a baby. The most important thing you can do is to work out what you will need to care for your baby, both financially and in terms of how much physical help you will need. Make sure you will have enough support, for yourself and for the baby, once the baby arrives," she says.
But being prepared can mean something different for everyone. The many books, articles, and videos on various aspects of pregnancy, adoption, childbirth, child development, and parenting may be good starting points. You may need to dig for more information, advice, and support that relate to your specific disability. The good news is that, increasingly, there are more materials available geared towards parenting with a disability.
Talking with other mothers, both with and without disabilities, may be a better strategy for some women. Nancy, a mother who has a spinal cord injury, now shares with mothers her experiences about everything from breastfeeding, diapering, the terrific two's, and school transitions. She said that the worst of all for her was knowing that when she and her husband were working through their parenting dilemmas on their own, somewhere out there other couples were doing the same. "We parents were not benefiting from each other," said Nancy. "I'm glad to finally have the opportunity to keep another parent from having to start totally from scratch; and, in a larger sense, to celebrate with others the experience of parenting as a viable and rewarding option for persons with a disability."
Another way to stay ahead of the curve is to see your needs as a mother as an ongoing process. Your needs and your partner's will change throughout pregnancy, as your child grows, and also as your disability changes. One good way to start, according to the Parenting Book for Persons with a Disability, is to complete a Child Care Abilities Survey. This survey helps the prospective parent with a disability identify the specific skills they will need in order to care for a child, the adaptations they may need to make around the house, and how much extra physical support they will need.
The survey was published as part of the 1995 publication, Parenting with a Disability: Assistive Devices and Adaptations for Child Care by Elaine Carty. It's available for $15 from Elaine Carty, School of Nursing, University of British Columbia, T201-2211 Westbrook Mall, Vancouver, BC V6T 2B5; fax: 604-822-7466; email address: carty@nursing.ubc.ca
Children and adapting
While you'll no doubt learn to adapt to your child's needs, your child will learn to adapt to your needs as well. Patti explained how her daughter also learned to adapt to her, "When she was a toddler and wanted me to hold her, she would go to the sofa and pat the cushion. She learned quickly that I needed to sit down in order to hold her."
Mothers with disabilities do face extra challenges; life does not get any simpler as children grow up. In a 1996 survey by Berkeley Planning Associates, 792 parents with disabilities reported their greatest challenges were:
- Keeping up with errands and appointments for their children o Chasing and retrieving children
- Making recreation opportunities available to their children outside the home
- Finding accessible parking near child care, school activities, or events
Not only does a mother face challenges related to the physical aspects of getting her child from place to place in her busy life, but interpersonal issues around disability may come to light as she and her child grow together. Somewhere around the middle school years, things may change. Your child might feel both embarrassed by your disability and guilty. Children have to take on what society is teaching them about disability and also what they learn at home. They also have peer pressures and fears about being different.
For example, Karen, who uses a scooter, tells of her son, who at an early age, thought everyone was like his mom. When he was a bit older, he was proud when they went shopping and would say, "I'm related to this scooter." By age ten, he would not acknowledge his mother when she passed him and his friends on the street. Karen cautioned that it was also important to remember what was a normal teenage reaction to a situation.
Children will become increasingly aware of your disability and have more and more questions as they mature. It is important to help your child understand about disability. Discussing this issue will likely become a recurring theme in your lives.
Keeping the lines of communication open, inviting children to talk about their feelings and discomfort, and telling them that you understand they may feel uncomfortable are techniques a parent can use to deal with difficult times.
Keep in mind that all children do not necessarily respond in the same way to a parent with a disability. On the positive side, it has been said that in families where a parent or parents have disabilities and differences are discussed, lived with and valued, children may have a better chance of developing a built-in open-mindedness about diversity. This was echoed in the survey results by Berkeley Planning. Overwhelmingly, parents reported that the greatest blessing is that their children have learned to be compassionate, accepting and open to diversity.
[Excerpted from The Parenting Book for Persons with a Disability: From Planning Your Family to Raising Adolescents, sold by the Parenting with a Disability Network at the Centre for Independent Living in Toronto, Inc. (CILT), Canada, for $25 (Canadian). 416-599-2458. CILT is a consumer-driven, community-based organization assisting people with a disability to gain independence and integrate into the community. CILT was "founded on the philosophy of the independent living movement and encourages people with disabilities to exercise their rights, make their own choices, and take control of their lives." ]
Parenting with a Disability Resources ...
Disability Pregnancy and Parenthood International
Quarterly journal and a United Kingdom information service. DPPi promotes the networking of information and experience on all aspects of disability, pregnancy and parenthood among disabled parents, potential parents and the professionals who work with them. freespace.virgin.net/disabled.parents/Default.htm
Mother to Be: A Guide to Pregnancy and Birth for Women with Disabilities
by J. Rogers and C. Matsumura. New York: Demos Publishers. 1991.
800-532-8663
Parents with Disabilities Online
www.disabledparents.net/adaptive.html
The Parenting Book for Persons with a Disability
Centre for Independent Living in Toronto, Inc.
205 Richmond St. West, Suite 605
Toronto, Ontario, M5V 1V3. 1999.
Through the Looking Glass
2198 Sixth St. Suite 100
Berkeley, CA 94710-2204
510-848-1112
www.lookingglass.org
This organization has information on parenting, adaptive equipment and clinical support services for families with a member who has a disability and providers.
Their resources include:
Adaptive Parenting Equipment Idea Book
Adaptive Baby Care Equipment Book
Parenting with a Disability newsletter
See also ...
The Road to Intimacy
"Mommy, why do you walk with a cane?"
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