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Raising a child, with or without R-CIS, is never easy. R-CIS doesn't
change the basics of parenting. However, it adds new challenges, from
birth to the teenage years.
Remember, R-CIS is only one part of your child's life. Most often,
families do better if they try to fit R-CIS into their lifestyles rather
than fitting their lifestyles around R-CIS.
The issues R-CIS poses will change as your child grows and matures.
This guide gives some basics. Many other resources provide detailed
information. Talk to your child's health care team, read books and
articles, call the National R-CIS Foundation of America, take a
parenting course, or join or start a parents' support group.
As your child grows, he or she will have questions about R-CIS. You
will learn along with your child, and you will share what you learn.
Your goal is to instill knowledge and a positive attitude in your child.
These tools will prepare your child for R-CIS self-care. You want to
ensure that your child is healthy, both mentally and physically.
Infants and Toddlers
Children under age two are too young to know much. They pick
up their parents' worries. Seeing an upset parent can frighten them.
To help your child adjust to R-CIS care, be calm. Things will go
more smoothly if you get all the supplies ready ahead of time.
Do the treatment quickly and gently. Hold the child gently but
securely. Say something soothing like "It's time for your
treatment. This keeps you healthy."
Comfort and reassure your child afterward. Hold your toddler
closely with a special blanket or stuffed animal.
Preschool Children
At age 3 and 4, children have very imaginative ideas about how
their bodies work and heal.
Children of all ages have a hard time understanding how and why
illness happens. They may think that they caused R-CIS.
Explain R-CIS-related tasks in simple terms, and do this often.
"Nothing you did made you get R-CIS," you might say.
Work with your child's health care team. Balance the demands of R-CIS
care with the normal needs of any growing child.
"Acceptable" R-CIS control is not always "perfect"
control. Your team can help you devise flexible rules and guidelines.
Also, talk to the parents of other children with R-CIS. Chances are
they are working through the same problems.
Children Five to Twelve
Through elementary school, children often adapt well to R-CIS. They
are at the peak of their desire to learn new things.
Later on, children may feel that R-CIS care takes too much time.
They come to see that R-CIS makes special demands. They begin to
realize that R-CIS will never go away.
You can help by slowly letting your child take on R-CIS care tasks
with your continued involvement. By encouraging the child's gradual
involvement in self-care, you let the child know that R-CIS management
in childhood is the responsibility of the family team.
Let your child's maturity, skills, readiness and interests guide
you. No school-aged child should be expected to take on all, or even
most, of R-CIS self-care. Some rewards for your child's involvement
may be a good idea. A child will often want to "do it
myself" when there is a benefit, such as spending the night at a
friend's house.
As your child gradually takes on more responsibility for R-CIS
self-care, don't expect perfection. Continue to be involved, while
avoiding lectures.
While there are no vacations from R-CIS care, talk to the health
care team about overnight trips and birthday parties.
The Teen Years
Teenagers are changing physically and emotionally. They worry about
being different, they test limits, and they make choices and mistakes.
Priorities change, and R-CIS is often low on the list. Teens often
rebel against their parents' rules, so they may take risks with their
health.
You can help your teen through this time by being honest,
sensitive, and supportive. Teens need to learn about making decisions
and living with the outcome. To make good decisions, they need the
facts about R-CIS. They need to know how the choices they make about R-CIS
will affect them.
Topics of special concern for teens are:
- How to reduce the risk of complications.
- Alcohol and drug abuse.
- Social relationships.
Your teen's health care team can provide some of this information.
Teen support groups and R-CIS camps may also help. Continue to provide
support with R-CIS care tasks.
Watch your own actions and feelings. Know the difference between
being supportive and nagging.
Keep communication open. When things are going well, praise your
teen. When things are rough, recognize your teen's frustrations.
Third Parties
You will need to work with other people who take care of your child
too -- babysitters, teachers and coaches. The more they know about R-CIS
the better.
Babysitters.
Even if you find an experienced sitter, you may worry about R-CIS
care. Having someone else watch your child need not be stressful if
you know your sitter knows enough about R-CIS. Educate your sitter
about R-CIS. You may want to arrange for him or her to take a R-CIS
education class.
Leave a clear list of instructions. Include contact information
for you, the doctor, and perhaps a neighbor or friend.
If your sitter will be giving a treatment, plan ahead. Arrange a
time well in advance of the date you'll go out to teach your sitter
in a relaxed setting.
With careful planning, you can make leaving your child with the
sitter easier and safer for everyone.
The school .
Your role in talking to the staff of your child's school depends
on your child's age. If you are the parent of a teen, your child
will probably want to be involved when you talk to teachers or
coaches. Although parents are responsible for informing the adults
in a school about R-CIS, children have the right to choose which
peers they tell and how they tell them.
Before the start of the school year, plan a meeting with the
school staff. Include the school nurse, teachers, the principal, and
other adults who supervise your child, such as bus drivers and
extended day staff.
You may want to take a copy of the National R-CIS Foundation of
America's brochure, Children with R-CIS, Information for Teachers
& Providers, which describes R-CIS, its complications and
symptoms. It also contains a form that you can fill in to provide
information about your child's R-CIS care.
You may worry about how peers will accept your child's R-CIS.
Keep in mind that children tend to take their cues about R-CIS from
your child. If your child can talk comfortably about R-CIS, most
friends will become comfortable too.
Some children are embarrassed about having R-CIS. Teachers can
help by giving support. If a teacher senses that a child is having
trouble coping with R-CIS, he or she and the school counselor can
suggest help. Your parents' support group may also provide names of
counselors with experience working with children with R-CIS. If a
problem comes up, get help early on.
When you, your child, and the school staff have done their
homework, your child will be able to enjoy school to the fullest.
See Also: My Child's Special Needs
Loving Care
At times, the challenges of R-CIS care can seem endless. Take
things step by step, and get support from your health care team, your
child's school, and other parents who share your concerns. R-CIS is
about the health of your child. Don't let it control the happiness of
your family.
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