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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