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http://www.girlshealth.gov/

Illness & disability for parents

Helping build health

Caring for a girl with an illness or disability can be tough. From daily care to doctor’s visits, you have a lot to manage. And then there are the usual challenges of the teen years. But with effort — and lots of love — you can be an amazing help to a girl with health issues.

Check out some ways you can promote the health of a girl with an illness or disability:

  • Learn about her condition and ways to support her health. Ask her doctor for information you can take home. Look for groups that focus on her specific condition. Check out the resources below.
  • Help prevent problems with regular checkups and immunizations. Learn more about flu shots and other vaccines.
  • Help her learn about her condition. Information can help her build healthy habits and feel more in control. The girlshealth.gov section on types of illnesses and disabilities explains diabetes, asthma, brain injury, vision loss, and more. She also can find information through our list of kid-friendly websites about specific conditions
  • Be honest. Kids need to trust you. If a procedure is going to hurt, don’t lie. (You don’t need to go into awful detail though.)
  • An open book.

    Congenital. Acquired. Chronic
    . Health conditions can come with a lot of confusing terms. You and the girl in your life can check out helpful definitions in the girlshealth.gov glossary. (Congenital means that a condition started at birth. Acquired means it developed after birth. Chronic means a condition is ongoing.)
  • Learn ways to work well with doctors. Also help her to learn how to talk to her doctors.
  • Find healthy compromises. Kids may fight tight rules. Talk to a doctor about a reasonable balance. If your girl has diabetes, for example, discuss occasional treats. And when possible, offer choices to help her feel more in control.
  • Remember the basics. Every child needs good nutrition and sleep. And exercise boosts mood and strength. If your girl has a disability, ask a YMCA or other group if it has activities and equipment that are right for her.
  • Prepare her. Knowing what to expect can make things less scary. And she’s more likely to cooperate if she understands why tests, procedures, or a special diet is necessary.
  • Applaud healthy behaviors. Positive reinforcement usually works better than being very strict or making lots of negative comments.
  • Find supports and services. Local hospitals and government agencies can offer lots of help. Your state Parent Training and Information Center can tell you about resources for kids with disabilities. Work with your school to get help and to develop an Individualized Education Program (IEP), if appropriate.
  • Teach her skills. Help her learn to take care of herself in appropriate ways as she gets older.
  • Tackle teen issues. Girls with illnesses and disabilities face a lot of the same issues other girls face. Help them learn about puberty, sexuality, and other aspects of their growing bodies. Talk to them about the risks of alcohol and drugs.
  • Have fun. Laugh. Relax. Don’t focus only on a girl’s health condition.

Health issues can come with a lot of emotional issues. You can learn how to help a child cope with anger, fear, and other feelings. You can start by reminding her that she’s not just someone with a health condition — she’s someone with great gifts to share.

Caring for yourself arrow top

Try these tips to deal with the demands you face:

  • Make sure to get enough sleep, exercise, and nutrition. You can’t take good care of someone else if you are exhausted or sick.
  • Find healthy ways to de-stress. Learn ways to deal with stress, like deep-breathing.
  • Deal with your feelings. Talk to family or friends. If your emotions are hurting your ability to take good care of yourself or others, consider professional counseling.
  • Join a support group. Groups for caregivers may be for people with specific conditions or for caregivers in general. You can find support groups locally or on the Internet.
  • Do things you enjoy. You’re more likely to be kind to others if you’ve been kind to yourself. Get out and have a little fun.
  • Ask for help. Friends and family often are very happy to lend a hand.
  • Tackle problems. Make to-do lists and decide which items you need to take care of first. 
  • Look for resources. Find out about resources in your community, such as transportation for a girl with a disability and respite care services to lighten your load. Doctors, hospitals, support groups, social workers, and government agencies can suggest resources.

As you take care of a girl with an illness or disability, don't aim to be "perfect." Nobody’s perfect, so you’re sure to fail if that’s your goal. Instead, focus on all the great things you’re doing to support and love a girl who needs you.

Websites

  1. Children and Complementary Health Approaches - This is useful information if you are considering complementary approaches, such as herbs or dietary supplements.
  2. Asperger Syndrom Fact Sheet - You can get information on symptoms, treatments, and other helpful topics.
  3. Asthma - This is helpful information for Asthma.
  4. Facts about Cerebal Palsy - This is helpful information from the Centers for Disease Control and Prevention.
  5. National Diabetes Educatoin Program: Teens - This site provides a wide range of information about teens and diabetes.
  6. Spina Bifida - This is helpful information from the Centers for Disease Control and Prevention.
  7. Vaccines.gov - This website offers information on finding places to get vaccines, help paying for vaccines, and more.
  8. What Is Juvenile Arthritis? - This is an easy-to-read factsheet and answers important questions.
  9. Stuttering - This is helpful information from the National Institutes of Health.
  10. Caregiver support - The Office on Women's Health offers information on caregiver stress and support.
  11. Tourette Syndrome - This is helpful information from the National Institutes of Health.
  12. Growth Disorders - This is helpful information from the National Institutes of Health.
  13. Attention Deficit Hyperactivity Disorder - This is helpful information from the National Institute of Mental Health.
  14. American flag. Childhood Diseases – Wondering how to keep your child healthy? Need symptom or treatment information? This website from the U.S. Centers for Disease Control and Prevention has resources on childhood diseases and symptoms.
  15. American flag. Parent Information – This website from the U.S. Centers for Disease Control and Prevention provides a wealth of information, covering topics like child safety, immunization schedules, and developmental milestones.
  16. American flag. A Parent’s Guide to Kids’ Vaccines – This online resource guides parents through vaccine benefits and risks, types of vaccines, and steps to take when your child is vaccinated.
  17. American flag. Vaccines for Children (VCF): Parents – For parents who have children who are uninsured, underinsured, or eligible for Medicaid benefits, this website provides resources to obtain immunizations for their children for free.
  18. Chronic Conditions (Copyright © American Academy of Pediatrics) – This website offers links to more information on childhood and teenage chronic conditions. It also offers articles on how to manage living with chronic conditions.
  19. Easter Seals Expertise (Copyright © Easter Seals) – This Easter Seals resource section offers a wide variety of assistance for families living with a disability. Learn how to make your home safe and accessible, develop an emergency evacuation plan, or plan for your child’s financial future. Check out a list of books for kids, solve public transportation challenges through Project ACTION resources, and read tips on planning a vacation.
  20. Family Connect (Copyright © American Foundation for the Blind) – Sponsored by the American Foundation for the Blind and National Association for Parents of Children with Visual Impairments, this website provides support and information on raising children with visual impairments.
  21. Medical Diseases and Conditions A-Z (Copyright © American Academy of Family Physicians) – This website provides links to many different diseases with the option to search for specific conditions.
  22. Raising Deaf Kids (Copyright © National Institute on Deafness and Other Communication Disorders) – This website provides a world of resources about children with hearing loss for parents. Be sure to check out the section on teenagers with hearing loss to find information on helping your teen with friends, school, and driving.

Publications

  1. Asthma and Teens - This is a helpful article form kidshealth.org.
  2. Camps for Kids with Special Needs - This is a helpful article form kidshealth.org.
  3. Caring for a Seriously Ill Child - This is a helpful article form kidshealth.org.
  4. Financial Management During Crisis - This is a helpful article form kidshealth.org.
  5. Giving Teens a Voice in Healthcare Decisions - This is a helpful article form kidshealth.org.
  6. Head Injuries - This is a helpful article form kidshealth.org.
  7. How to Talk to Your Child’s Doctor - This is a helpful article form kidshealth.org.
  8. Living with Lupus
  9. Muscular Dystrophy - This is a helpful article form kidshealth.org.
  10. Taking Your Child to a Therapist - This is a helpful article form kidshealth.org.
  11. Turner Syndrome - This is a helpful article form kidshealth.org.
  12. Understanding Dyslexia - This is a helpful article form kidshealth.org.
  13. A Guide to the Individualized Education Program – This guide provides an overview of the Individualized Education Program (IEP). It describes the content of an IEP and who the IEP team members are. It also looks at the process of writing an IEP as well as implementation and review of the IEP and what to do if parents do not agree with the plan.
  14. pdf Bullying and Children and Youth with Disabilities and Special Health Needs – This fact sheet discusses what parents can do if they feel their child with a disability is a victim of bullying.
  15. Coping with Chronic Illness (Copyright © American Academy of Pediatrics) – Learning that your child has a disability or a chronic disease is hard. This fact sheet discusses ways in which to learn to help your child through their disability or chronic disease.
  16. pdf Disaster Preparedness: For People with Disabilities – This booklet covers some issues that people with disabilities may face when a disaster strikes. The booklet also has information about how you can get to a safe place and how you can meet your needs after the disaster.
  17. Developmental Screening – This fact sheet explains the importance of early developmental screenings in children to test for early signs of autism, mental retardation, and Attention-Deficit/Hyperactivity Disorder. This fact sheet also explains what programs are being used to screen for behavioral and development in children.
  18. For Parents (Copyright © Center for Young Women’s Health) – This website offers information about many conditions that may affect teenage girls.
  19. pdf HPV Vaccine: What You Need to Know – This fact sheet discusses the benefits and risks of getting the human papillomavirus (HPV) vaccine. It also defines HPV and talks about who should get the vaccination, who should wait, and where you can get more information.
  20. Kids' Quest on Disability and Health - Information for Parents and Teachers – The Kids' Quests are designed for students in 4th, 5th, and 6th grades. Parents and teachers can modify the materials to meet students' learning styles and levels. The Quests can be used in lessons about health, social studies, and tolerance in society.
  21. Learning About an Undiagnosed Condition in a Child – When a child has an undiagnosed rare condition, it can be very difficult for parents who want answers. This website has frequently asked questions about undiagnosed conditions for parents.
  22. Lifetime Sports: Parental Roles in Facilitating and Supporting an Active Lifestyle for a Child with a Disability (Copyright © National Center on Physical Activity and Disability) – This publication helps parents of children with disabilities understand how to foster a positive attitude, communicate, select activities, and set goals in order to support physical activity in their children.
  23. Living with AD/HD: Parenting Children and Teens (Copyright © National Resource Center on AD/HD) – This website gives tips on how to communicate with family, friends, and school about a child’s learning disability. It also discusses lifestyle changes and how to handle stress if your child has a learning disability.
  24. Meningitis – Have questions about meningitis? This online resource provides information on risk factors, transmission, signs and symptoms of meningitis. It also has resources on the meningitis vaccine.
  25. The ABCs of Respite Care: A Consumer’s Guide for Family Caregivers (Copyright © ARCH National Respite Network and Resource Center) – Taking care of a child with a disability can be exhausting, stressful, and overwhelming at times. This resource explains the types of respite care available, tips for choosing a program, and how to pay for care.
  26. Understanding Disability (Copyright © Easter Seals) – Learn all about specific disabilities and medical rehabilitation from Easter Seals. This web page covers cerebral palsy, down syndrome, learning disabilities, post–polio syndrome, spina bifida and stroke. Rehabilitation topics include physical therapy, occupational therapy, and speech and hearing therapy.
  27. Vaccines Needed by Teens and College Students – Children generally develop risks for more diseases as they approach their teen years. This resource gives the Centers for Disease Control and Protection’s vaccination recommendations for older children and teenagers.
  28. Young People With Cancer: A Handbook For Parents – This booklet discusses the most common types of childhood cancer, treatments, and side effects as well as issues that may arise when a child is diagnosed with cancer. It also offers medical information and practical tips gathered from parents.

Organizations

  1. Administration on Developmental Disabilities, ACF, HHS
  2. AIDS.gov
  3. American Academy of Pediatrics
  4. Disability.gov
  5. HealthCare.gov
  6. Immunization Action Coalition
  7. InsureKidsNow.gov
  8. National Cancer Institute, NIH
  9. National Center for Chronic Disease Prevention and Health Promotion, CDC
  10. National Center for Immunization and Respiratory Diseases, CDC, OPHS, HHS
  11. National Center on Birth Defects and Developmental Disabilities, CDC
  12. National Diabetes Information Clearinghouse, NIH
  13. National Dissemination Center for Children With Disabilities, OSEP, ED
  14. National Network for Immunization Information
  15. National Vaccine Program Office
  16. Parent Advocacy Coalition for Educational Rights (PACER) Center
  17. Parents of Kids with Infectious Diseases
  18. Utah MedHome Portal

 

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Content last reviewed January 07, 2011
Page last updated October 31, 2013

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