Spirit Lake Consulting, Inc.
Caring for Our People with Disabilities & Chronic Illness
"Making life better!"
WEBSITES ON SPECIFIC DISABILITIES
Incredible as it may seem, not all of the really good web pages on specific disabilities can be found on our site! We have reviewed all of the sites below and found them both informative and interesting. We hope you will, too. If there are sites that you would like to recommend we add here, please email us at info@spiritlakeconsulting.com
Alzheimer's Disease - This site from the National Institute on Aging explains what you need to know to help a parent or yourself. It discusses loss of memory and other abilities due to dementia.
Arthritis - This disease affecting the joints can be both painful and disabling. Although it is most common in older adults, there are 5 million people under 45 years old with arthrities.If you read not just this page from the administration on aging but also follow the links on it, you will learn much about this disease.
Asperger's syndrome: A guide for teachers - Children have difficulty with social skills and organization. They may be strong in some subject areas and very weak in others. They have trouble making friends and in understanding non-verbal behavior.
Cornelia de Lange Syndrome is often characterized by both mental retardation and visual impairment.
Dandy Walker Syndrome (also see hydrocephalus)
Down syndrome is the most common disorder caused by an abnormal chromosome, occurring in about one out of 900 births. Not surprisingly, there are several organizations devoted to Down syndrome. The largest are:
- The National Down Syndrome Society - bills itself as the most comprehensive site on the Internet, and they just might be. The have all kinds of information, from Alzheimer's (did you know that it is much more common among people with Down syndrome?), to guides for self-advocacy to a section in Spanish to a section for people with Down Syndrome and other developmental disabilities to chat and post information about themselves.
- The National Down Syndrome Congress also has an enormous website. We particularly liked the news stories section and the information for new parents. If you haven't read the "Welcome to Holland" article yet - do!
Fetal Alcohol Syndrome is enough of a major concern in Indian country that we have included a separate page. FAS is found among all races, and in the richest and poorest of families. We recommend this page because it gives not just characteristics of people with FAS but also sound advice on how to be a better caregiver for children and young adults with FAS/FAE.
Hydrocephalus - occurs in one in 500 births, once referred to as 'water on the brain', is really a build-up of spinal fluid. Once a fatal diagnosis, leading to mental retardation and death, hydrocephalus can now be treated and many individuals will live normal lives. Conditions associated with hydrocephalus include:
Rett Syndrome - click here for the International Rett Syndrome Association - "The child with RS usually shows an early period of apparently normal or near normal development until 6-18 months of life. A period of temporary stagnation or regression follows during which the child loses communication skills and purposeful use of the hands. Soon, stereotyped hand movements, gait disturbances, and slowing of the rate of head growth become apparent."
Usher syndrome - People with Usher syndrome are hearing-impaired and visually impaired. They may be hearing impaired at birth and gradually lose their vision or gradually experience declines in both hearing and vision. This link is the most easily understandable description of Usher syndrome we have read.
NEXT: National Disability Organizations