Your child may feel angry or sad about having arthritis.
But be aware that you as parents, siblings, and other family members
may also have troubling feelings about the disease and its effect on
the family. However, acceptance and settling into a routine will
benefit everyone in the family.
When you are first told your child has arthritis, you might feel
shocked, numbed, or disbelieving. You might also feel guilty, and ask
yourself if something you did or didn't do caused your child's
arthritis. While these thoughts are common to all parents whose
children are ill, work hard to put such thinking into perspective.
Remember: you are not the reason for your child's arthritis.
The child with arthritis may feel many different emotions. Children
can feel "hurt" by an illness that isn't their fault, blame parents for
the illness, adopt a "why me?" attitude, engage in self-pity or become
angry because of restrictions on activities. They may also resent other
children who are well, including brothers and sisters.
Other children in the family may feel left out and resentful because
of the amount of time and attention the child with arthritis requires.
Or they may feel guilty, as if their normal "bad thoughts" towards
their brother or sister had somehow caused the illness.
Children may over-identify with the brother or sister with special
needs. Some feel a pressure to achieve or make up for what their
brother or sister can no longer do. Others want to involve themselves
in care giving--to the point where they give up their own normal
activities. In these cases, try to help siblings find other ways to
deal with their feelings. Whenever possible, let brothers and sisters
settle their own differences. Encourage siblings to talk with peers who
live in homes with similar concerns. The key to dealing with all these
emotions is to talk about them with one another.
Talk to your child's brothers and sisters about arthritis--let them
express their feelings about the disease. Encourage the family to treat
the child with JRA as they did before she became ill--but at the same
time, do remember that she will need some special attention.
Talk to your child about how she feels about the illness. Allow your
child to express her anger about arthritis from time to time.
Encourage your child to develop her special talents.
Expect your child to behave as well as other children--do not give
her special privileges, like avoiding light household chores that she
is physically able to do, just because she has arthritis.
Encourage your child to learn as much as she can about arthritis and
about her treatment program. Older children can be responsible for
taking medications on time, reporting any medication side effects to
you, and following an exercise program. Prepare them for the change to
adult health-care.
Remember: Your attitude toward arthritis will affect the way your child feels about arthritis.
Try not to overprotect your child. Your child might become too
dependent if you do everything for her or if you keep her from tasks
which she is capable of doing. Don't be manipulated into allowing
activities that shouldn't be done, but compromise when you can. Being
as consistent as possible will help your child learn what is expected.
Plan special time to spend alone with your spouse, or with the entire
family. When your child first becomes ill, you may set aside
relationships with other family members. It is important, however, to
continue to talk and spend time with all family members.
The child with arthritis may develop emotional or behavioral
problems that you cannot deal with alone. Other family members may feel
overwhelmed. Fortunately, help is available.
Education
Children with arthritis should nearly always attend a regular school.
They should not be isolated from other children of the same age. But
because of JRA, your child may need some special materials and services
to help her get along in a regular school.
It is important to educate your child's teachers, the school
nurse, and the principal about arthritis and its effects on your child.
In general, teachers are cooperative and understanding about JRA. In a
few cases, it may be necessary to ask your child's physician or a
member of her health-care team to intervene.
Federal laws which give your child rights by barring
discrimination against children with disabilities in public schools,
and requiring private schools to be accessible, include:
- Section 504 of The Rehabilitation Act of 1973. It
bans discrimination against disabled persons in programs that receive
federal funds.
- Public Law 101-476-The Individuals with
Disabilities Education Act (IDEA), formerly the Education for All
Handicapped Children Act, PL 94-142. It says that every child has a
right to a free, appropriate public education, whether or not the child
has a disability.
- Part H of the IDEA Act. It provides
money to states to identify infants and toddlers with developmental
disabilities, and to offer them and their families early intervention
services until they reach the age of three.
- The
Americans With Disabilities Act. It requires private schools, daycare
centers and nurseries to be accessible to children with disabilities,
and bans discrimination in hiring and employment.
For more information on these laws, contact the Special Education Director in your state's Department of Education.