GENETICS AND CHROMOSOME INFORMATION
Genetics Home Reference
This is a National Library of Medicine's site that provides information about genetic conditions, genes, and chromosomes.
http://ghr.nlm.nih.gov/
National Organization for Rare Disorders (NORD)
NORD is a 501(c)3 organization that helps people with rare diseases and
assists the organizations that help them.
http://www.rarediseases.org/
March of Dimes Quick Reference: Chromosomal Abnormalities
An easy-to-understand, basic chromosome guide can be found here.
http://www.marchofdimes.com/professionals/14332_1209.asp
CHROMOSOME 3 INFORMATION
Hugo Chromosome 3
This is a site that provides information on chromosome 3.
http://www.gdb.org/hugo/chr3/
Ensembl Genome Browser
A detailed map of chromosome 3 is available at this site.
http://www.ensembl.org/Homo_sapiens/mapview?chr=3
Chromosome 3: Human Genome Landmarks Poster
An image of chromosome 3 with associated syndromes from the Human Genome Project is located here.
http://www.ornl.gov/sci/techresources/Human_Genome/posters/chromosome/chromo03.shtml
Disruption of Contactin 4 in 3 Subjects with Autism Spectrum Disorder
This article describes a recent study linking autism with chromosome 3 deletions.
http://jmg.bmj.com/cgi/content/abstract/jmg.2008.057505v1?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&fulltext=CNTN4&andorexactfulltext=and&searchid=1&FIRSTINDEX=0&sortspec=relevance&resourcetype=HWCIT
SUPPORT GROUPS
Chromosome3
This is the Yahoo! Group I created for people affected by chromosome 3 disorders.
http://health.groups.yahoo.com/group/Chromosome3/
Chromosome Deletion Outreach
This is a U.S.-based information and support group for families affected by rare chromosome disorders.
http://www.chromodisorder.org/CDO/
Unique
This is a U.K.-based information and support group for families affected by rare chromosome disorders.
http://www.rarechromo.org/html/home.asp
Chromosome 3q Registry
This is a group created to provide information and support to families affected by chromosome 3q deletions. I am not sure if it is still active.
http://members.cox.net/chromosome3/index.htm
RESOURCES FOR FAMILIES WITH SPECIAL NEEDS
Financial Assistance
The Social Security Administration provides benefits for children with
disabilities. A child under 18 can qualify for monthly payments by
meeting the administration's definition of disability for children and
the eligibility limits of income and resources.
http://ssa.gov/pubs/10026.html
Health Insurance
Medicaid makes it possible for certain low-income individuals and
families to get health care when they could otherwise not afford it.
It is available only to certain low-income individuals and families
who fit into an eligibility group that is recognized by federal and
state law. Medicaid sends payments directly to health care providers.
http://www.cms.hhs.gov/home/medicaid.asp
Medicaid waivers are available for certain individuals who do not meet
the income limits that Medicaid requires. It may cover the expenses
that primary health insurance does not. The following page contains
information on the different Medicaid waiver programs available in
each state.
http://www.cms.hhs.gov/MedicaidStWaivProgDemoPGI/MWDL/list.asp
Education
The Individuals with Disabilities Education Act (IDEA) is a federal
civil rights law that addresses the educational needs of disabled
children. It dictates how states and public agencies provide early
intervention, special education, and related services to children with
disabilities from birth to age 21. Congress intended that each child
with a disability receive a Free Appropriate Public Education (FAPE)
to prepare him or her for higher education, employment, and
independent living. Section 504 of the Rehabilitation Act of 1973 and
the Americans with Disabilities Act (ADA) also protects children
covered by the IDEA.
http://idea.ed.gov/
The No Child Left Behind Act (NCLB) is a federal law that reauthorized
several federal programs in order to improve the performance of
primary and secondary schools in the United States. The law is guided
by four principles: accountability, flexibility and local control,
parental choice, and what works.
http://www.ed.gov/admins/lead/account/nclbreference/index.html
Families may choose to home school their special needs children
instead of enrolling them in public school. The Home School Legal
Defense Association (HSLDA) is a nonprofit advocacy organization that
protects the rights of families to manage their children's education.
http://www.hslda.org/Default.asp?bhcp=1
Legal Assistance
For assistance locating a local attorney or finding reduced-cost legal
aid, contact the American Bar Association.
http://www.abanet.org/legalservices/findlegalhelp/home.cfm
Wrightslaw is a website that provides reliable information and
resources about legal issues concerning education law, special
education law, and advocacy for children with disabilities.
http://www.wrightslaw.com/
The ADA is a federal civil rights law that forbids discrimination
based on disability in certain situations. The act defines a
disability as a physical or mental impairment that substantially
limits one or more major life activities.
http://www.ada.gov/
Community Resources
The Arc is a community-based organization that advocates for the
rights of children and adults with intellectual and developmental
disabilities. It provides various services and support for
individuals and families.
http://www.thearc.org/NetCommunity/Page.aspx?pid=183&srcid=-2
Easter Seals is a charitable organization that assists children and
adults with autism and other disabilities and special needs. It
provides services, therapies, and treatments tailored to individual
communities.
http://www.easterseals.com/site/PageServer
HOMESCHOOLING
Homeschooling is becoming a much more mainstream idea, so information is relatively easy to find.
Look for books on homeschooling in your local public library (if they don't have any, ask them to request some from another library). There are books on why to homeschool, how to homeschool different ages of children, different approaches to homeschooling.
Home Learning Year by Year: How to Design a Homeschool Curriculum from Preschool Through High School by Rebecca Rupp
The First Year of Homeschooling Your Child: Your Complete Guide to Getting Off to the Right Start by Linda Dobson
The Successful Homeschool Family Handbook by Dorothy Moore and Raymond Moore
While you are there, speak to the librarians (don't forget the
children's librarian). Typically, homeschoolers spend a lot of time
in their libraries, so librarians tend to have a lot of information.
Most areas have a homeschooling group. They offer support,
information, opportunities for social interaction, field trips, and
schooling children in small groups. Try here:
http://www.localhs.com/
http://www.homeschooling.gomilpitas.com/weblinks/support.htm
http://www.homeschooling.about.com/od/supportgroupsbystate/a/sgusa.htm
Each state has different requirements for parents who choose to
homeschool their children. Talk to the administration at your local
public school or at the school district's main office. Be prepared to
meet some resistance: some public schools discourage homeschooling for various reasons (especially since they will lose the funding they would have received from your child's attendance). Don't ask if you can homeschool, tell them you are going to homeschool, and you would like to know the legal requirements. This site could be helpful:
http://www.hslda.org/default.asp?bhcp=1
There are a ton of websites and blogs on homeschooling. Some give legal advice, some provide or sell curriculum, some sell books and supplies, some just share experiences and ideas. You can spend a lot or a little on homeschooling (lots of materials are already in your home, and there is a growing market for used books). You can choose to be very structured; you can make religion an important part of homeschooling; you can belong to an umbrella school that provides curriculum, keeps records, and grants diplomas; or you can take an "unschooling" approach. Google!
http://www.homeschool.com/
http://www.homeschooling.about.com
This site is about homeschooling special needs children:
http://www.nathhan.com/
SENSORY SOLUTIONS
Cayli has oral sensitivity issues. She used to refuse to eat certain
textures: mashed potatoes, cakes. If you put those in her mouth, she
would gag. She would eat some foods occasionally, but would gag on them at
other times (canned peaches, applesauce). Additionally, she hates
having her teeth brushed. Her occupational therapist worked
on this for a year and a half! She used vibrating toys and chewy
sticks, and pushed on her gums and cheeks with her finger (while
wearing flavored latex gloves). She also did a lot of sensory
integration work that did not directly involve her mouth (playing with
shaving cream, beans, different texture balls). I have heard of people
letting their children play with food to get used to the texture before
trying to eat it (applesauce in the bathtub).
Cayli's therapists used these two sites to buy products to help with these issues:
