What is an HIV/AIDS infection?
HIV (Human Immunodeficiency Virus) is a disease that attacks and destroys the body’s immune system. The immune system is the body’s defense against diseases and sickness. If the immune system does not work well, a person can develop deadly infections and cancers.
AIDS (Acquired Immune Deficiency Syndrome) is the most serious stage of HIV infection. This stage means the immune system of the infected person has been destroyed.
Being infected with HIV does not mean a person has AIDS, but rather that the person’s immune system may be damaged, leading to AIDS.
U.S. Department of Health and Human Services, 2004
What can I do to help my child?
You have made an important first step by reading more information on HIV and AIDS. You also can talk with other parents of children with HIV and AIDS. They have gone through what you are going through now and perhaps can help. You also can get help from parent support and advocacy groups. Research tells us that the earlier we begin to help children, the better the results for the child and family.
Below are some checklists of things you can do to help your child. Remember that you are not alone.
IN THE STATE OF FLORIDA:
Contact Children’s Medical Services (CMS) for health care for your child:
Children’s Medical Services
Main Phone: (850) 245-4200
Work with my child’s service providers:
A service provider can be your pediatrician, an audiologist, a teacher, a principal, a social worker or any professional. Remember that you know more about your child than anyone else and are the main influence in your child’s life. Service providers are there to help you and your child. Some tips for speaking with service providers:
- Feel free to ask questions and make comments. No one knows your child better than you do. Be specific about what you know about your child and what you want and need for your child. Be honest about what you expect, any worries you may have, or about anything you don’t understand.
- If you think your child needs something in particular, keep asking until you get it or until you learn why it is not needed.
- Work with professionals in early intervention or in your school to write your child’s IFSP or IEP to reflect your child’s needs and abilities. Be sure it includes such services as speech-language pathology, physical therapy and occupational therapy if your child needs these. Don’t forget about assistive technology, too.
Get more information:
Visit more websites. Read a book. Watch a video on HIV and AIDS. Include your child and family. Talk with another parent. Help Me Growcan help you meet other parents and get services.
Have my child wear a Medic Alert bracelet:
That way, in case of an emergency, vital information on your child’s condition is available
Talk with my child’s teacher often:
Keeping your child’s teacher updated on your child’s medical condition is vital. Here are a few things you can ask your child’s teacher to do to make your child’s school time more successful:
- Provide a comfortable place for your child to rest and provide breaks for your child when needed.
- Watch for your child’s attention level.
- Consider shortening your child’s school day if necessary.
Help my child if he or she is having problems with social skills:
If your child’s ability to get along with friends and family is affected by HIV/AIDS, here are ways to help your child:
- Ask friends and family to coach and help your child to know what to do in a group situation. Coach the child on ways to handle social situations. Role-playing (pretend games) is one good way to do this.
- Teach your child correct social behaviors, such as greetings, how to carry on a conversation, how to use expressions, show interest, get someone’s attention, and how to have fun with a friend.
- Be direct and specific but nonjudgmental about how your child behaves.
Make sure my child has a trusted adult with whom to talk:
Sometimes children talk more easily with adults who are not their parents. This happens for many reasons, often because they do not want to worry their parents. Children need adults with whom to talk freely. A therapist, a psychologist or a teacher often can have a conversation with your child that he or she may not share with you.
Include my child in all parts of my daily life:
Encourage your child to take part in family fun, recreation activities, and play that can be done safely. Laughing, running, chattering are all fun and good. Talk with them all day long about whatever you are doing even before they learn to talk.
Plan a play time every day for us just to be together:
Try to spend time each day just playing and talking with your child. This can be hard to arrange with big families or hectic life styles, but it will make both of you feel better. For ideas on how to play with your young child, go to www.Parenthood.com
Make music a part of my child’s life:
Music is a great way to share time together. Try it in the car and brings great pleasure. There are many children’s tapes where everyone can sing together. Your child can learn words at the same time. Music can be soothing and, indeed, healing. Some research says classical music stimulates brain development.
If my child is still a baby, I will learn how to do infant massage:
This is a powerful way to connect with your baby and a soothing activity for both of you. It will also show your baby that life can feel good and not so often uncomfortable or “medical.”
How can I do deal with all this?
First of all, you need to take care of yourself.
Having a child with HIV or AIDS is hard work and stressful. While there are times of joy and celebration with your child, there may be serious times, too. It is easy to get overwhelmed.
You can make a difference in your child’s life by working with your child and therapists, doctors and teachers. But before you can take care of anyone else you must be kind to yourself. Taking care of yourself is not selfish, but rather necessary. You can’t help your child if you are overworked and over-stressed.
Figure out how to take care of your own needs. The next time friends or family say, “What can I do to help?” let them babysit or lend a hand so you can have some time to yourself. Here are some things to “recharge your batteries:”
- Do something that makes you feel happy — perhaps going out with a loved one or friends, taking a long bath or a creative project.
- Exercise is vital for mind, body and spirit — perhaps long walks, lifting weights, bike riding or an aerobic class. Whatever you do, make sure it is fun.
- Talk with other parents of children with a chronic illness or immune disease. Other parents can help with practical tips, cheer you up and be a source of strength.
- Stay hopeful.
What causes HIV/AIDS?
The most common ways for children to get HIV infection is from their mothers or from risky behavior.
Ninety-one percent of children with HIV or AIDS get it from a mother who has it. They may get the infection before birth while still in the womb or right after by breast-feeding. Some medications and treatments can help protect the child from catching HIV from the mother before birth, thus reducing the numbers of children born with HIV.
Another way to get HIV or AIDS is for children and teenagers to do high-risk behaviors such as using injected drugs (with needles) or having unprotected sex. Children or teenagers who share needles to take drugs can get HIV or AIDS from infected blood. Another way to get HIV or AIDS is for young people to have unsafe sexual practices –such as not using protection, not using condoms correctly or not practicing abstinence (avoiding having sex).
What does HIV/AIDS mean for the health of my child?
How HIV infection will affect a child’s health differs with each child. Some children show symptoms of the infection as early as the year they are born; others may not show any signs of disease until much later. How old the child is when symptoms start to show is an important clue to how your child’s health may be affected.
HIV makes your child’s immune system weak and hard to fight off infections or cancer, and it can make your child more vulnerable to other problems and diseases. Sometimes it can even cause strokes. The medicines used to treat HIV can have many side effects. Medicine used to treat HIV can help, but not cure the disease. Some possible side effects of the treatment include:
- Nausea or being sick to the stomach.
- Fatigue or tiring often and easily.
What does HIV/AIDS mean for my child’s intelligence and learning?
The effect of HIV/AIDS on learning differs for each child. Children may have problems with learning and reasoning. Sometimes language skills or social skills are affected, such as knowing how to communicate in social situations. Some children with HIV or AIDS will be completely fine. A thorough evaluation (testing) by a qualified psychologist can tell you if your child’s ability to learn or gain social skills have been affected by having HIV or AIDS.
Children with HIV or AIDS sometimes have behavioral problems. They may be depressed, or fail to show any emotion, or seem not to care about anything. Take these problems seriously. If you notice signs that behavior seems changed and “off,” have your child see a skilled psychologist for evaluation.
Research has shown these common problems for children with later stages of HIV:
- Staying focused on tasks.
- Expressing themselves or talking with others about emotions.
- Acting younger than their age.
- Remembering things right after they happen.
- Giving and following directions or finding their way.
- Following things with their eyes or being able to see changes in lights.
- Ability to follow along and learn or react fast when things change too quickly.
Brown, 1999; Hittelman et al., 1993; Roelofs et al., 1996; Cohen et al., 1991; Boivin et al., 1995; Diamond et al., 1987
Will my child be able to attend child care, preschool, regular school or after-school programs?
All children have the right to a free and appropriate public education. Children with HIV or AIDS are entitled to attend school just like all other children. Your child may need the supports found through special-education classes, Section 504 accommodations or hospital/homebound programs.
Before your child is old enough for kindergarten, there are programs designed to help your child’s development. In every community there is an early intervention program from infancy to about age 3. Early Steps is Florida’s early intervention program.This program helps you determine, find and organize the early supports your child may need, and help you find and arrange for support, information and training.
Who are some professionals my child may need to see?
Your child may need to see many different health care specialists. For example:
Pediatrician: A doctor who specializes in treating children. The word “pediatric” in front of a professional’s title means he or she work with children.
Pediatric allergist/immunologist: A doctor with special skills to treat children with allergies and immune system problems.
Pediatric hematologist: A doctor who specializes in treating children with blood disorders.
Pediatric endocrinologist: A doctor who specializes in treating children with hormone disorders
Pediatric HIV/AIDS specialist: A doctor who specializes in treating children with HIV/AIDS infections.
Pediatric psychologist: A professional who specializes in evaluation and treatment of emotional and behavioral problems and disorders in children. Psychologists also can provide psychological testing and assessments.
Pediatric physiatrist: A doctor who deals with restoring function for a child disabled as a result of a disease, disorder or injury.
Pediatric speech-language therapist: A professional who evaluates and treats communication disorders and swallowing problems. A speech-language pathologist is sometimes called a speech therapist or speech pathologist.
Art or music therapist: A professional trained to use art or music for emotional support and counseling.
Social worker and counselor: A professional who provides counseling and emotional support for the child and family, and may help coordinate services, too.
Care coordinator: An individual responsible for organizing the details across agency lines and serving as your contact to help you and your family get services and assistance.
Early childhood special educator/special-education teacher: A teacher trained to work with your child, focusing attention on your child’s development and working with you to learn techniques to benefit your child.
What are some websites where I can learn more about HIV/AIDS?
AIDS Information http://www.aidsinfo.nih.gov A service of the U.S. Department of Health and Human Services offering information on HIV/AIDS treatment, prevention and research.
AIDS.ORG http://www.aids.org The site, dedicated to educating, raising awareness and building community, has more than 50 facts sheets on articles about the disease.
Elizabeth Glaser Pediatric AIDS Foundations http://www.pedaids.org Provides information specific to children with HIV/AIDS.
The Merck Manual, Second Edition online. www.merck.com An online medical information source provided by Merck Pharmaceutical Co.
NIH MedlinePlus http://www.nlm.nih.gov/medlineplus/aids.html A comprehensive source of links, this is a service of the U.S. National Library of Medicine and the National Institutes of Health.
Bandaids and Blackboard http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/sitemap.html A great site for children, teens and parents of children with medical challenges.
What are some special books I can read to my child?
You Can Call Me Willy: A Story for Children About AIDS (hardcover) by Joan C. Verniero, Verdon Flory Willy Jones is 8 years old. She loves baseball, lives with her grandmother, and has AIDS. Willy talks about her illness and exhibits strength and courage as she learns to cope with the symptoms and the side effects of treatment, to put up with classroom taunts, and to find fun and friendship. (Ages 4-8)
Be a Friend: Children Who Live With HIV Speak (hardcover) by Lori S., Ph.D. Wiener, Philip A., M.D. Pizzo. A collection of drawings and writings by young HIV patients of the National Cancer Institute. These young people, ages 5 to 19, reveal the human face of HIV and AIDS, and plead for acceptance and kindness. In “I often wonder,” the contributors question and dream, expressing fears and speculations about death. “Living with HIV” is about coping on a day-to-day basis with uncertainties and limitations, pain and never-ending medical interventions. “Family, Friends, and AIDS” records the isolation imposed by society’s fears. Some children try to reassure readers about the safety of casual contact, appealing for an end to panic. Ignorance and prejudice are the targets of a 10-year-old’s essay, “How to treat people with AIDS.”
We Have AIDS (Watts, 1990), by Elaine Landau. Features teens life stories as well as medical facts. (Ages 8-up)