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The National Dissemination Center for Children with Disabilities site provides families, students, educators, and others with information on topics regarding children and youth with disabilities.
Search For: In this section, you can search for national disability organizations, conferences, resource libraries, NICHCY publications; you can search by “phrase”.
Research: The site is developing a comprehensive resource on research-based information about effective practices for educating and providing services to children with disabilities.
There
is a much needed section discussing what is good research: What makes
for good research? How do you combine the findings of multiple research
studies? Making sense of statistics in Reseach, Is this reasearch well
done?
A-Z Topics: This section is a series of Web resource pages on
topics of high interest and concern to the well-being of children with
disabilities. Disabilities and topics are listed in alphabetical order.
There is a new Autism "suite" of web pages, see below.
LD OnLine is a comprehensive site (for parents, teachers, and other professionals).
LD OnLine is a national educational service of public television station WETA in Washington, D.C. (Station WETA has a long-term commitment to serving the Learning Disability (LD) community, creating television, radio, and Internet programs dedicated to improving the lives of children with LDs and Attention-Deficit/ Hyperactivity Disorder ADHD.)
LD Online has hundreds of articles on learning disabilities and ADHD. There are monthly columns by noted experts, and active bulletin boards where parents and professionals can share advice and concerns. E-mail sent to LD OnLine regarding a child or student with learning disabilities is personally and confidentially answered within one to two days by a learning disabilities expert.
This section has helpful hints and strategies for volunteers who teach, tutor, coach, or mentor someone with a LD or ADHD.
An excellent comprehensive section, with topics such as Math skills, bilingual/LD, foreign language acquisition, processing deficits in addition to as expected topics such as I.E.P., behavior /discipline, parenting, etc. See our Assistive Technology Links for more information.
A free software downloadable Windows Browser plug-in designed for use with Internet Explorer 4 or Netscape Navigator. It reads all contents of LD OnLine for you (2.5- 5M download ).
Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD), is a national non-profit organization providing education, advocacy and support for individuals with AD/HD.
The site contains a short but informative FAQ section and a number of downloadable informational fact sheets for parents.
CHADD sponsors an annual conference.
Nonverbal Learning Disorder, known as NLD, is a neurophysiological disorder originating in the right hemisphere of the brain. Reception of nonverbal or performance-based information governed by this hemisphere is impaired in varying degrees, including problems with visual-spatial, intuitive, organizational, evaluative, and holistic processing functions.
The NLDA sponsors an annual symposium (9th annual symposium in March 2005 in South San Francisco) for parents and professionals.
B. P. Rourke, S. A. Ahmad, D. W. Collins et al
Child Clinical/Pediatric Neuropsychology: Some Recent Advances
Annual Review of Psychology February 2002, Vol. 53, pp. 309-339
Note: This is an interesting article relating NVD to various medical conditions.
For professionals, this article can be purchased online (http://www.annualreviews.org).
Abstract The neuropsychological assets and deficits of several types of pediatric neurological disease, disorder, and dysfunction are described. These are examined from the perspective of the syndrome of nonverbal learning disabilities (NLD) and the "white matter model" designed to explain its complex manifestations. It is concluded that children with some of these diseases exhibit the NLD phenotype, whereas others do not. For the most part, the diseases in which the NLD phenotype is particularly evident are those wherein it has been demonstrated that perturbations of white matter (long myelinated fibers) are particularly prominent.
“…approximately 80% of children with FAS have microcephaly and behavioral abnormalities. As many as 50%…also exhibit poor coordination, hypotonia, attention-deficit hyperactivity disorder…
The National Association on Fetal Alcohol Syndrom (NAFAS) is dedicated to elimating birth defects caused by alcohol consumption during pregnancy and improving the quality of life for those affected individuals and families. The site includes FAQs, resources, and information for educators and health care professionals.
Fragile X is the most common inherited cause of mental retardation, and second most common cause of mental retardation (Down Syndrome is most common cause).
The website contains info on diagnosis, testing, intervention, education, life planning, etc.
The “What is Fragile X” section gives a very good overview of the condition.
The website contains a complete chapter from: Hagerman and Hagerman eds. Fragile X Syndrome: Diagnosis, Treatment, and Research. John Hopkins University Pr, May 2002, 3rd ed. (Note: The Hagermans are from the UC Davis M.I.N.D. Institute)
This national organization is located here in the S.F. Bay Area:
National Fragile X Association
PO Box 190488
San Francisco, California 94119
phone: 800-688-8765
This site is maintained by two mothers, each with an autistic child. A wealth of information is neatly categorized, for example: Behavioral Issues (disciple, modifying behavior), Family Issues, Legal Issues (civil rights, police, SSI/SSA), Treatments ( gluten-free diets, medications, NIDS ), etc.
Discussions on controversial topics (e.g. MMR, mercury) are thoughtful, balanced, and fairly discussed.
This site contains a buyer’s guide and product reviews (e.g. Top
6 software for children
with Autism, Top 10 Musical Toys, The Quiet Quilt).
The sponsored links are informative and appropriate.
The AAP’s policy on the pediatrician's role in the diagnosis and management of Autistic Spectrum Disorder in children.
This website has a wealth of information on Asperger Syndrome. It was founded and is maintained by a parent of a child with Asperger Syndrome.
MAAP Services for Autism and Asperger Spectrum is a nonprofit organization dedicated to providing information and advice to families of More advanced individuals with Autism, Asperger's syndrome, andPervasive developmental disorder (PDD).
“The terms more advanced autism, high functioning autism, Asperger's Syndrome and pervasive developmental disorder (PDD) refer to individuals within the autism spectrum who do not experience severe intellectual impairments.”
This site contains an extensive list of information and reprints of articles on AS, PDD.
Some categories include : Hyperlexia articles/links, NLD articles/links, HFA articles/links, Semantic-Pragmatic articles/links.
MAAP sponsors an annual conference.
NICHCY has a new Autism "suite" of web pages on its web site
that includes five
separate topic pages devoted to five separate disorders under the umbrella
category of Pervasive Developmental Disorders (PDD). The web pages can
be found
at: http://nichcy.org/resources/
NICHCY also provides links to scientific studies of autism at http://www.nichcy.org/researchinfo.asp
This is a recently created website providing parents, families…with selected published research studies in the medical literature on autism and Asperger syndrome.
Note: The M.I.N.D. Institute was the inspiration of four families with children with autism. The families dreamed of a place where there was a parent-professional partnership, where families and researchers worked together, where research on autism was done and then applied/tested. Today, such a comprehensive, interdisciplinary team approach in the M.I.N.D. clinic exists, where developmental pediatricians, child neurologists, child psychiatrists, and child psychologists work in the same physical facility (designed by the father of one of the original four families). The physical design of the M.I.N.D. Institute site fosters collaboration between scientists, clinicians, and parents.
The goal of the M.I.N.D. Institute is to find cures for neurodevelopmental
disorders, starting with autism. It is also interested in fragile X syndrome,
language and learning disabilities, ADHD, epilepsy and other neurodevelopmental
disorders.
Recruitment for Research: The website lists the numerous ongoing research projects for which they are requesting participants. Requests for participation is available online.
Yearly Conference: The MIND Institute sponsors a conference for parents, educators, and professionals each year in August (6th Annual conference in 2005).
New Publication: Autism Spectrum Disorders: A Research Review for Practitioners ($33). A synthesis of recent research on the etiology, assessment, and treatment of autism spectrum disorders for nonspecialist practitioners: a review the scientific literature, discussions on practical implications, guidelines for evaluation and treatment within the framework of evidence-based medicine.
The UHK recently adapted two screening tools (CHAT and M-CHAT) to create the CHAT-23. This checklist tool was effective in screening children 18-24m of age.
See article in Pediatrics (August 2004).
The Chinese version of the CHAT-23 may be available online from the University of Hong Kong in the near future.
A very basic introduction/overview of CP appropriate for children and parents.
In a series of FAQs, goes into detail about the medical background concerning CP.
Clearly written answers (with links to resources, references) to questions about CP.
Contains “Kids Quest”, designed to get kids (4th - 6th grade) to think about people with disabilities (e.g. Do people who are disabled use the bathroom?) Kids are encouraged to use the Internet to learn about a disability and the effect it has on a child's life.
2004;114;1106-1113 Pediatrics October 2004
W. Carl Cooley and Committee on Children With Disabilities
The online version of this article, along with updated information and
services
“UCP is the leading source of information on cerebral palsy and is a pivotal advocate for the rights of persons with any disability…one of the largest health charities in the U.S.”
Note: This website is detailed and created with small fonts. It may be difficult for many individuals with disabilities to navigate. Use the keyboard shortcut Control + in Internet Explorer to increase font size
A comprehensive, user friendly, up-to-date resource for both parents and professionals.It was created by a pediatrician who is the parent of a child with Down syndrome.
Many abstracts of articles (1997 to the present) in addition to selected reprints from various sources.
Contains a comprehensive links to over 200 sites related to Down Syndrome.
This website was created by Jamie Berke, who was born deaf during the rubella epidemic of the 1960s.
The site contains sections devoted to sign language, cochlear implants, hearing devices, employment, deaf community, deaf animals, hearing loss basics, historic deaf people, etc.
The sign language section contains info on learning to sign, baby signing, Spanish sign language, Indian sign language, and much more. Overall, a very informative site.
Gallaudet University's Laurent Clerc National Deaf Education Center has been mandated by Congress to develop, evaluate, and disseminate innovative curricula, instructional techniques and strategies, and materials.
The website is a rich resource.
Back issues of Odyssey magazine (has articles about issues important to families of deaf and hard of hearing children, and to those involved in deaf education).
Back issues of World Around You magazine (for deaf teens).
Information about deafness: Assisted devices, cochlear implants, sign language.
In the U.S., about 1 in 1,000 is born with profound deafness, and more than half of these cases are caused by genetic factors. Most cases of genetic deafness (70-80% ) are nonsyndromic. Nonsyndromic deafness is hearing loss that is not associated with other signs and symptoms. (In contrast, syndromic deafness includes forms of hearing loss that are part of genetic syndromes.)
This Genetics Home Reference page from the National Library of Medicine-NIH is devoted to nonsyndomic deafness and also provides an overview concerning deafness and hereditary hearing loss.
A bibliography relating to the experience of deaf /hard-of-hearing Asian-Americans and other cultural communities.
(Special thanks to Dr. Cindy Wu for informing us of this site.)
Brief summary concerning CSL and deafness in China.
This site contains examples of Chinese Sign Language (CSL) illustrated with line drawings and described in the official simplified Chinese script. The signs are grouped into various categories.
Some of the categories include:
Chinese alphabet : http://www.spe-edu.net/shouyu/
Clothing: http://www.spe-edu.net/shouyu/go.asp?type=%D2%C2%CE%EF&offset=0
Chinese Surnames (from Cao to Zhu) (41 signs):
http://www.spe-edu.net/shouyu/go.asp?type=%D0%D5%CA%CF&offset=0
Food (56 signs): http://www.spe-edu.net/shouyu/go.asp?type=%CA%B3%C6%B7
Physiology-Health (170 signs):
http://www.spe-edu.net/shouyu/go.asp?type=%CE%C0%C9%FA&offset=65
Psychology (70) < http://spe-edu.net/shouyu/go.asp?type=%D0%C4%C0%ED
>.
These are two Chinese Sign Language dictionaries, but are difficult to find:
• Chung-kuo lung jen hsieh hui. Chung-kuo shou yü. Pei-ching
: Hua-hsia ch`u pan she. 1995.
• Yah, S.C. The Chinese signs : Lexicon of the standard sign language
for the deaf in China. Hong Kong: Chiu Ming Pub. Co, 1977.Deafness and
Sign Languages of the World
This webpage contains links related to deafness and sign languages of the world.
Many of the links need updating, but this is a good place to start, if interested in deafness and sign languages outside the U.S.
This site answers questions such as: what causes epilepsy? What are the different kinds of epilepsy, seizures? How is epilepsy diagnosed? How can epilepsy be treated? How does epilepsy affect daily life? What to do if you see someone having a seizure?
This site also contains a glossary at bottom of page.
Some information is available in Chinese.
This site has a good section on First
Aid.
The eCommunities Section offers opportunities to interact
with individuals/families affected by epilepsy. (Parents helping Parents.
Teen Group. Seniors, and many other groups.)
This site has brief discussions on topics related to epilepsy and a short list of links .
Brief, concise summary of anti-Seizure medicines.
Contains a well put together section on seizure medications for the layperson.
Contains a section discussing seizure medications in general, and a section discussing individual seizure medicines. There is a brief history of anti-seizure drugs.
Many of these individuals have symptoms typical of NLD.
The Turner Syndrome Society creates awareness, promotes research, and provides support for all persons touched by Turner Syndrome.
It recently held its annual conference in Seattle in June 2004.
Note: CMV is the most common congenital infection in humans, occurring in an average of 1% of all live births in the U.S.
A good overview of CMV can be found: “What everyone should know about CMV.”
Back issues of the newsletter CMV Update (from Fall 1996) are available.
Good overviews on the “What Is NF?” section.
Contains current and past news-letters in pdf format.
A website created by a non-professional, for “regular people”. Carol “…collected links to some of the finest sources of information about NF on the Internet. There is a great deal of information out there! Unfortunately, a lot of it was not written with regular people in mind. On these pages, you will find carefully selected sites - only the best.”
Located in San Francisco:
Rose Resnick Lighthouse for the Blind and Visually Impaired
214 Van Ness Avenue,
San Francisco, CA 94102 (near City Hall)
An onsite store sells products for persons with visual impairments.
This is the organization that Helen Keller devoted her life to.
The site contains resources for blind and visually impaired.There is a well-constructed glossary of eye conditions with links.
