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Parents & Caregivers

Illness & disability en Español

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. Asperger Syndrome
2. Asthma and Teens

3. Cystic Fibrosis
4. Fetal Alcohol Syndrome
5. Juvenile Rheumatoid Arthritis
6. Understanding Dyslexia
7. Living with Lupus
8. Muscular Dystrophy
9. Spina Bifida
10. Stuttering
11. Tourette Syndrome
12. Turner Syndrome
13. Understanding Autism
14. What is a Growth Disorder?
15. What Is ADHD?
16. Cerebral Palsy

Web sites

1.  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.   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.   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
2.   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/kitppage.htm
3.   My Child’s Special Needs: A Guide to the Individualized Education Program - This online guide is designed to assist educators, parents, and state and local educational agencies in implementing the requirements of Part B of the Individuals with Disabilities Education Act (IDEA) regarding Individualized Education Programs (IEPs) for children with disabilities, including preschool-aged children.
   
   http://www.ed.gov/parents/needs/speced/iepguide/index.html
4.   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
5.   Developing Your Child’s IEP (Copyright © NICHCY) (PDF – 549KB) - This publication takes parents through the process of developing an Individualized Education Plan (IEP) and deciding on their child’s placement in school. Additional resources are provided for more information.
   
   http://www.nichcy.org/pubs/parent/pa12.pdf
6. 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
7. 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 understand 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
8. Lifetime Sports: Parental Roles in Facilitating and Supporting an Active Lifestyle for a Child with a Disability (Copyright © NCPAD) - 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
9. 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.   DisabilityInfo.gov
   
   http://www.disabilityinfo.gov/digov-public/public/DisplayPage.do?parentFolderId=500
2.   National Center for Chronic Disease Prevention and Health Promotion, CDC, OPHS, HHS
   
   http://www.cdc.gov/nccdphp/index.htm
3.   National Center on Birth Defects and Developmental Disabilities, CDC
   
   http://www.cdc.gov/ncbddd/
4.   National Diabetes Information Clearinghouse, NIDDK, NIH, HHS
   
   http://diabetes.niddk.nih.gov/index.htm
5. National Dissemination Center for Children with Disabilities, OSEP, ED
   
   http://www.nichcy.org/
6. Parent Advocacy Coalition for Educational Rights (PACER) Center
   
   http://www.pacer.org/
7. Parents of Kids with Infectious Diseases
   
   http://www.pkids.org/

 

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Content last updated November 11, 2007

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