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Parents & Caregivers

Home : Parents & Caregivers : Illness & disability

Illness & disability : en Español

Helpful tools for your daughter

Raising a daughter with an illness or disability can be tough. It may help to know that you are not alone. Millions of parents in the U.S. are raising a child with an illness or disability. The resources in this section can help you deal with the issues you may face as the parent of an ill or disabled child. Topics covered include special education, making an Individual Education Plan, and helping your daughter become more active and independent. Your daughter can use the tools in this section to track her progress toward independence.

Featured articles

  1. Alternative Medicine and Your Child
  2. Asperger Syndrome
  3. Asthma and Teens
    4. mom with daughter in wheelchair
  4. Caring for a Seriously Ill Child
  5. Cerebral Palsy
  6. Cystic Fibrosis
  7. Fetal Alcohol Syndrome
  8. Finding a Camp for your Child with Special Needs
  9. Juvenile Rheumatoid Arthritis
  10. Living with Lupus
  11. Muscular Dystrophy
  12. Spina Bifida
  13. Stuttering
  14. Tourette Syndrome
  15. Turner Syndrome
  16. What is a Growth Disorder?
  17. What Is ADHD?
  18. Understanding Dyslexia

Web sites

  1. Federal resource Childhood Diseases - Wondering how to keep your child healthy? Need symptom or treatment information? Look under the symptom or disease headings listed on this web site from the Centers for Disease Control and Prevention.
  2. Federal resource girlshealth.gov: Illness and Disability - We have created the girlshealth.gov section on illnesses and disability to help adolescent girls learn more about some of the unique health issues and social situations they will encounter during the teen years. This section provides information, resources, and links to help your daughter learn more about illness and disability.

Publications

  1. Federal resource  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.

    http://www.ed.gov/parents/needs/speced/iepguide/index.html
  2. Federal resource  Coping With Disaster: Suggestions for Helping Children With Cognitive Disabilities - This site helps parents and educators focus on helping children with cognitive disabilities when a disaster occurs. This site also provides therapeutic and creative ways to interact with children during disasters.

    http://www.acf.hhs.gov/programs/add/Sept11/addcoping.html
  3. Federal resource  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.

    http://www.cdc.gov/ncbddd/child/devtool.htm
  4. Federal resource  Adobe 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 outlines who should get the vaccination, who should wait, and where you can get more information.

    http://www.cdc.gov/vaccines/pubs/vis/downloads/vis-hpv-gardasil.pdf
  5. Federal resource  I Can Do It, You Can Do It - The Office on Disability of the U.S. Department of Health and Human Services has launched a national initiative supporting physical activity for youth with disabilities called I Can Do It, You Can Do It. Visit this site for more information about the initiative.

    http://www.hhs.gov/od/physicalfitness.html
  6. Federal resource  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.

    http://www.cdc.gov/ncbddd/kids/parents.html
  7. Federal resource  Parent Portal - This website compiles all of the information within the Centers for Disease Control and Prevention, HHS, about parenting. It has a wealth of information, covering topics such as child safety, immunization schedules, and developmental milestones.

    http://www.cdc.gov/parents/
  8. Federal resource  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.

    http://www.cancer.gov/cancerinfo/youngpeople
  9. Easter Seals Expertise (Copyright © Easter Seals) - This Easter Seals resource section offers a wide variety of assistance. Learn how to make your home safe and accessible for someone with a disability, or develop an emergency evacuation plan. Check out a list of books for kids, solve public transportation challenges through Project ACTION resources, and read tips on planning a vacation. You can also find information on planning for your child's financial future.

    http://www.easterseals.com/site/PageServer%3Fpagename%3Dntl_resource_room
  10. Financial Management During Crisis (Copyright © The Nemours Foundation) - A crisis, such as your child having a chronic illness or disability, can be the source of both emotional and financial strain. This publication provides parents with information on how to navigate the health care system and avoid financial trouble.

    http://www.kidshealth.org/PageManager.jsp?dn=girlshealth&lic=175&cat_id=172&article_set=21736&ps=104
  11. 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, set goals, and more in order to facilitate and support physical activity in their children.

    http://www.ncpad.org/lifetime/fact_sheet.php%3Fsheet%3D450%26view%3Dall
  12. Mental Retardation: Learning How to Help Your Child (Copyright © American Academy of Family Physicians) - If your child is mentally retarded, the best thing you can do to help your child (and yourself, too) is to learn more about mental retardation. This fact sheet provides tips to learning more about mental retardation.

    http://familydoctor.org/online/famdocen/home/children/parents/special/birth/549.printerview.html
  13. Parenting Corner Q&A: 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.

    http://www.aap.org/publiced/BK5_ChronicIllness_Cope.htm
  14. 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.

    http://www.easterseals.com/site/PageServer%3Fpagename%3Dntl_understanding

Organizations

  1. Federal resource  Administration on Developmental Disabilities, ACF, HHS

    http://www.acf.hhs.gov/programs/add/
  2. Federal resource  Disability.gov

    http://www.disability.gov/
  3. Federal resource  National Center for Chronic Disease Prevention and Health Promotion, CDC, OPHS, HHS

    http://www.cdc.gov/nccdphp/index.htm
  4. Federal resource  National Center on Birth Defects and Developmental Disabilities, CDC

    http://www.cdc.gov/ncbddd/index.html
  5. Federal resource  National Diabetes Information Clearinghouse, NIDDK, NIH, HHS

    http://diabetes.niddk.nih.gov/index.htm
  6. National Dissemination Center for Children With Disabilities, OSEP, ED

    http://www.nichcy.org/
  7. Parent Advocacy Coalition for Educational Rights (PACER) Center

    http://www.pacer.org/
  8. Parents of Kids with Infectious Diseases

    http://www.pkids.org/
  9. Utah MedHome Portal

    http://www.medhomeportal.org/

 

Federal resource = This article, publication, website, or organization is from the U.S. government.

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Content last updated November 11, 2007

U.S. Department of Health and Human Services, Office on Women's Health.

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