Ropard's Resource Links
LINKS TO PARENT SUPPORT GROUPS:
LISTSERVS AND PARENT GROUPS
A listserv for parents of children with Retinopathy of
Prematurity.
Send a blank email to the following:
http://groups.yahoo.com/group/ROP-support
A listserv for parents of children who are blind or visually
impaired moderated by an adult with ROP. To subscribe send a blank
email to the following:
http://groups.yahoo.com/group/BVI-Parents
A listserv for parents of children with persistent hyperplastic
primary vitreous (PHPV)
http://health.groups.yahoo.com/group/phpv
A listserv for parents of children with familial exudative
vitreoretinopathy
http://health.groups.yahoo.com/group/FEVR
A Website created by a parent with excellent resources for other
parents.
http://www.fevr.net/
A website dedicated to providing information and support to
individuals with Familiail Exudative Vitreoretinopathy.
http://www.familyconnect.org/message_board_folders.asp
American Foundation for the Blind (AFB) and the National Association
for Parents of Children with Visual Impairments (NAPVI), have created an
interactive
website with an abundance of useful information and and message boards
that are specifically related to a variety of eye conditions, including
ROP.
http://jgb.org/programs-parent-tele.asp
Tele-Support Groups for parents of children with visual impairment
are open-ended, informative and supportive discussions of issues
and topics of concern for parents raising children with visual
impairment. These groups are composed of parents with children who
have the same eye conditions. They are professionally facilitated and
are offered at no cost to parents. They meet by phone on a weekly basis.
http://health.groups.yahoo.com/group/AdultROP/
A listserv for adults with retinopathy of prematurity.
National Association of Parents of the Visually Impaired (Napvi)
http://www.spedex.com/napvi
NAPVI is an organization of parents whose children
are visually impaired. The group provides information, resources and
the opportunity to meet with other parents at their conferences. For
more information they can be reached at (800) 562-6265.
National Federation of the Blind - Parent of
Blind Children (NFB-POBC)
http://www.nfb.org
NFB is an organization composed of blind adults.
Their parent division is NFB-POBC. This organization has been
extremely active in advocacy for the rights of adults and children
who are blind. They can be reached for further information by email
nfb@access.digex.net.
New telephone support group:
A national telephone support group for
parents of young children with Retinopathy of Prematurity is beginning
in January of 2007. Facilitated by a psychologist, the support group is
being sponsored by the Jewish Guild for the Blind, a member of NAPVI.
The Guild is a nonsectarian, not-for-profit vision health care agency
located in New York. There is no cost to the parents who participate
and groups will be conducted weekly by calling in to a toll-free
number at a time that is most convenient for the majority of the
participants. For more information, or to register for this group,
please call 1-800-915-0306.
http://www.norries.org
A website dedicated to providing support and
information for individuals with Norries Disease
.
EDUCATIONAL LINKS:
http://www.partnersinpolicymaking.com
This could be the best resource on the web for
parents in the United States to learn about the laws effecting their
child and how to use them. Parents from other countries will also
find very meaningful information in this self-directed study course.
http://pbskids.org/arthur/grownups/teacherguides/communication/blindness.html
A wonderful resource for any mainstreamed child's
classroom teacher.
http://www.nclid.unco.edu/HVoriginals/Advocacy/Popup/popup.html
Responses to arguments that arise during IEP
sessions.
http://www.lilliworks.com
North American distributor for Active Learning materials.
http://www.family-friendly-fun.com
A parent run website with great resources and links.
http://www.visionarysolution.com
Helpful links and valuable information for parents.
http://spedex.com
The special Education Exchange website.
http://www.tsbvi.edu
A great starting point for almost any information on visually
impaired children.
http://www.tsbvi.edu/braille/braillebooks.htm
Parents might be especially interested in the downloadable
braille books that can be found at this site.
http://www.visionkits.com
Vision Associates website displaying all of their vision
stimulation materials. This is an excellent resource for both
parents and professionals.
http://welcome.to/blindlinks
An excellent starting point to finding resources on the web.
http://www.wonderbaby.org
A parent-created and truly comprehensive website dedicated to other
parents of visually impaired/blind children.
MEDICAL LINKS:
http://www.e-advisor.us
An excellent website with a wealth of information.
http://www.mic.ki.se/Diseases
Sub-section on selected anomalies and diseases of the eye.
http://blindness.about.com
Information on all areas of blindness
http://www.children-special-needs.org
Information on vision care and eye health
http://www.lasikprk.com/VisionPlaceIII/discover/frmain.htm
A web site that provides simulations of vision problems.
http://www.lowvision.org
The starting point to web low vision resources.
http://www.nicu101.com
A website for parents of premature babies.
http://www.ortopadusa.com
Website with fun eye patches and games.
http://www.preventblindness.org/children/EyePatchClub.html
Another website with resources for eye patching.
http://www.rarediseases.org
National Organization for Rare Disorders
http://www.irsc.org
Internet resources for special children.
http://www.rnib.org.uk/library/research
Europe's largest collection of materials on blindness. You can
search and browse the catalogue of books, journal articles, videos
and other resources.
http://www.viguide.com
Comprehensive listing for a variety of blindness related sites.
http://visionre.net
Explains need for glasses on young children and gives excellent
suggestions for introducing glasses to young children.
http://www.visionrf.org
Describes current research projects related to retinal eye
conditions.
http://www.disease-resources.com
An extensive listing of medical issues, with a sub-category for
eye diseases.
BRAILLE LINKS:
http://www.seedlings.org/
Seedlings sells a huge collection of braille books and
also offers free braille books once a year.
http://www.aph.org
Catalog contains braille and large print books
http://www.ed.arizona.edu/VILiteracy/default.htm
A great website for learning about braille. There
is even a download to convert your keyboard into a mock
braillewriter.
http://www.nfb.org/fr/fr2/fr99sf07.htm
Information on the Braille Literacy Law
http://www.hotbraille.com
Learn Braille, send free Braille messages and find resources for
Braille users.
http://www.afb.org/braillebug
Braille games, riddles and other fun children's activities for
both braille and print users to explore.
http://www.brl.org
Braille courses on the internet
http://www.aph.org/edresearch/braille_rap/index.html
ABC braille rap song
http://www.vhighline.net/braille/
Excellent source for adults to test their Braille skills.
http://www.braillejail.net
Self study Braille courses on the internet.
http://www1.robobraille.org/websites/acj/robobraille.nsf
A free service which transcribes emails into Braille or MP3 audio
files. Available in several different languages
http://www.braillebookstore.com/view.php?T=Braille+Chocolate+Mold
A source for making your own chocolate greeting cards
http://pbskids.org/arthur/print/braille/
A fun way for siblings and friends to write a note in braille.
ALSO
There is no website link, but braille chocolate bars are available
with a variety of different sayings from Sweet Tooth. For further
information contact Judy Davis 32 Vinton Road, Rochester, New York
14622. Her phone number is (585) 544-1853 and her email address is
judydavis12@rochester.rr.com
ACCESSIBLE COMPUTER GAME LINKS:
http://www.lworks.net
http://www.7128.com
http://www.sonokids.com
http://wwwx.cs.unc.edu/~gb/wp/research/hark-the-sound/
http://www.amazon.com/s/?ie=UTF8&keywords=nintendo+flash+focus&tag=googhydr-20&index=aps&hvadid=1709686481&ref=pd_sl_3k1bm7o34c_e
http://www.soundsupport.net
http://gamesfortheblind.com
MISCELLANEOUS LINKS:
http://www.lookingatyou.org/site/index.php
A website created by young people with visual
impairments for other young people with visual impairments.
http://www.respitelocator.org
Lists respite care for many types of impairments and
most States and provinces. An excellent resource for caregivers who
just need a break.
http://www.nfcacares.org
Information about and suggestions for respite care
http://www.braillegifts.com
Braille embroidery, gifts, sound source locators and toys geared
towards the visually impaired.
http://www.caringbridge.org
This organization provides free personalized web pages for
families of premature babies.
http://www.hj.com/
Adaptive software for the blind.
http://www.globalexplorers.org
A special program for middle and high school
disabled students is posted each September on this website for a unique
international leadership program which will be conducted the following
summer.
www.paddlepro.com/proshop/merchant.mvc?Screen=PROD&Store_Code=P&Product_Code=warmitt&Category_Code=warm
A warm mitten that can be used while holding a
cane. NOTE: You can often find these types of mitts on ice
scrapers, you'll just have to remove the scraper.
www.pipsqueakers.com
Ingenious squeaky shoes for little ones just learning to walk. A
true motivator for children who are visually impaired.
http://www.spinozabear.com (Click on "Buddy Bear Project")
A free gift for severely visually impaired children - the Spinoza
bear comes with a built-in tape recorder and special tapes to help
soothe your child. 1-800-CUB-BEAR.
CATALOG LINKS:
http://www.ablezone.com
Online catalog of a variety of products for the
visually impaired.
http://brailleinstitute.org
Several adapted games are available through this
catalog.
http://www.toy-tia.org/Content/NavigationMenu/Press_Room/Publications_Resources1/Lets_Play_(HTML)/Lets_Play_2005.htm
Guide to Toys for Children Who are Blind or Visually Impaired. A
well organized site listing toys which are appropriate for visually
impaired children.
http://www.independentliving.com
Catalog containing products for the visually
impaired.
http://www.lighthouse.org
Lighthouse Consumer Products Division
http://lssgroup.com
LS&S Group Catalog - products for the visually
impaired.
Playworks
http://www.playworks.net
Montessori Service has a great catalog, but no
website. For a free catalog contact them at: (877) 975-3003 or
email: info@montessoriservices.com
RESOURCE LIST OF BRAILLE BOOKS FOR YOUNG CHILDREN
It is often very difficult to purchase books for a
child who may not be a print reader.
ORGANIZATIONS THAT PROVIDE BOOKS FOR CHILDREN TO
OWN
http://www.seedlings.org
Seedlings ... Braille Books for Children
P. O. Box 51924
Livonia, MI 48154-5924
(800) 777-8552
email -
seedlink@aol.com
Extensive catalog available for young children with
print/Braille/picture books, and print/Braille books.
www.braille-books.com
Braille and Print/Braille books for children and adults.
www.aph.org
Century Series Braille Book Club
c/o American Printing House for the Blind
1839 Frankfort Avenue
Louisville, KY 40206-0085
Not a large selection available for very young
children.
www.brailleinstitute.org
Expectations
Braille Institute Press
Braille Institute
741 North Vermont Avenue
Los Angeles, CA 90029
A free Christmas publication for grades 3 - 6
http://www.actionfund.org
American Action Fund free books
www.io4b.org
International Organization for the Blind
P.O. Box 656
Mount Dora, Florida 32756
Sells personalized print/braille books for children
www.nbp.org
National Braille Press
88 St. Stephen Street
Boston, MA 02115
Each title is offered only once!
www.lrs-largeprint.com
Library Reproduction Services
(800) 255-5002 x 101
Quality children's and young adult literature in
large print.
RESOURCE LIST FOR BRAILLE AVAILABLE ON THE WEB
http://www.loc.gov/nls/reference/factsheets/webbraille.html
http://www.loc.gov/nls/reference/circulars/magazines.html
www.bookshare.org
www.tsbvi.edu
- look for their braille books
ORGANIZATIONS THAT LEND BOOKS TO CHILDREN
Howe Press
Perkins School for the Blind
175 North Beacon Street
Watertown, MA 02172
Kenneth Jernigan Library for Blind Children (Free
Loan of Books)
A Division of American Action Fund for Blind Children and Adults
18440 Oxnard Street
Tarzana, CA 91356
Library of Congress (Free recorded materials with
player)
National Library Service for the Blind and Physically Handicapped
1291 Taylor Street, NW
Washington, DC 20542
Volunteer Braille Services (Loan of books, fee
involved)
3730 Toledo Avenue, North
Robbinsdale, MN 55422
LINKS TO PARENT SUPPORT GROUPS
National Association of Parents of the Visually Impaired (Napvi)
http://www.spedex.com/napvi
NAPVI is an organization of parents whose children are visually
impaired. The group provides information, resources and the
opportunity to meet with other parents at their conferences. For
more information they can be reached at (800) 562-6265.
National Federation of the Blind - Parent of Blind Children
(NFB-POBC)
http://www.nfb.org
NFB is an organization composed of blind adults. Their parent
division is NFB-POBC. This organization has been extremely active in
advocacy for the rights of adults and children who are blind. They
can be reached for further information by email
nfb@access.digex.net.
Jewish Guild for the Blind
The Jewish Guild has a telephone support group for parents of
visually impaired children. The Guild is non-sectarian and there
is no charge to join in the weekly call in. For more information
contact the Guild at 800-915-0306 or register online at:
http://www.jgb.org/programs-parent-tele.asp
LINKS TO EDUCATIONAL RESOURCES
Abledata
http://www.abledata.com
Resource for assistive technology
American Association of Home Bound Early Interventionists (AAHBEI)
AAHBEI is the professional organization of Parent Advisors to
families with children who are sensory impaired. As their name
implies, these professionals work within the home environment. For
information on services in your area they can be reached at (800)
396-6144.
American Optometric Association
http://www.aoanet.org
Lesson plans on the eye
American Printing House for the Blind
http://www.aph.org
The American Printing House for the Blind is a federally funded
organization. It prints material both in Braille and print and is
devoted to creating teaching materials exclusively for children who
are blind or visually impaired. For further information they can be
reached by email at info@aph.org.
Association for Education and Rehabilitation of the Blind
and Visually Impaired (AER)
http://aerbvi.org
AER is an organization of professionals who work with individuals
who are blind or visually impaired. There is a division of
professionals within AER who work with families and their young
children who are visually impaired. Email at:
aernet@fs1.sched.pitt.edu
Blind Children's Center
http://www.blindcntr.org/bcc
The Blind Children's Center offers nine excellent pamphlets for
parents at a very nominal cost. Several of their pamphlets are
available in both Spanish and English. They also sell books and
videos. For additional information you may call them at (800)
222-3566 or email them at info@blindctr.org.
Braille Institute
http://brailleinstitute.org
A wealth of information available for free, in a variety of
formats, some of which is also available in Spanish. An excellent
resource for parents. (800) 808-2555.
DB-Link
Source of information for early intervention and other services
for individuals who are deaf-blind. (800) 438-9276.
Fondazione Robert Hollman
http://goblin.tecnoparco.it/hollman.nsf
An Early Therapuetic Intervention Center for Visually Impaired
Children with a print and video library in four languages (Italian,
English, German and French). Telephone at +39/0323/788485 or email
at: hollman@verbania.alpcom.it
Hadley School for the Blind
http://www.hadley-school.org
The Hadley School for the Blind offers courses specifically for
parents and grandparents of children who are visually impaired.
There is no charge for these courses or for the materials used in
the course. For more information or a course catalog, call (800)
323-4238 or email at families@hadley-school.org
Lilli Nielsen Active Learning Materials
http://www.lilliworks.com
The U.S. source for Lilli Nielsen's Active Learning equipment.http://nclid.unco.edu/joomla/index.php?option=com_content&task=view&id=1084&Itemid=2
Music by Ear
http://www.guitarbyear.com/
Courses to teach a variety of musical instruments by ear. Free
download available.
National Center on Low-Incidence Disabilities
http://nclid.unco.edu/joomla/index.php
A wealth of information for both parents and teachers
Within
this website there is also an invaluable tool for parents when in
dispute with the school system for your child's IEP. You do
need to register to search through this website, but the information on
Pop-Up IEPs can be found at:
http://nclid.unco.edu/joomla/index.php?option=com_content&task=view&id=1084&Itemid=2
NICHCY
http://www.nichcy.org/
Nichy's site provides, among many other resources,
a listing of all state level vision administrators under
their state links.
Orientation and Mobility Resource Site
http://www.orientationandmobility.org/
Provides access to articles on a wide variety of areas related to
vision and vision impairment.
Oregon Project
An excellent curriculum for visually impaired and blind
preschoolers.
www.jacksonesd.k12.or.us/speced/regionalserv/ORPROJ.HTM
Overbrook School for the Blind
Overbrook offers a variety of programs for children of different
ages and abilities. The whole school is geared toward supporting
students as they grown and learn.
www.obs.org
Penrickton Center for Blind Children
Penrickton
specializes in treating blind children ages one through twelve with
at least one additional handicap such as deafness, cerebral palsy,
brain damage, developmental delay and seizures. There is no
charge to the families. For more information visit their website
at:
http://www.penrickton.com
International
For additional information on organizations serving the blind
throughout the world see:
http://blindreaders.info/forlibs.html
Blind Children's Fund
The Blind Children's Fund provides information and sells books
geared specifically for preschool blind children. A newsletter is
also available for a nominal charge. They can be contacted at:
Blind Children's Fund
311 W. Broadway
Suite 1
Mt. Pleasant, MI 48858
989-779-9966 Phone
989-779-0015 FAX
bcf@blindchildrensfund.org
Canadian National Institute for the Blind (CNIB)
http://www.cnib.ca
The Canadian National Institute for the Blind is a national agency
providing services throughout Canada. It provides vital programs
and services and has one of the world's largest libraries for people
with a print disability.
Christoffel-Blindenmission (CBM)
www.cbm.org
CBM's Mission is to serve individuals with visual impairments in
developing countries. It does not implement, but rather supports
projects that are run by local partner organizations.
Danish Association of the Blind (DAB)
www.dkblind.dk/dab
Danish Association of the Blind is an all blind organization.
Deafblind International (DBI)
www.deafblindinternational.org
DBI is the world association promoting services for deafblind people.
Ceentral to their work is the development of services to enable a good
quality of life for deafblind children and adults of all ages.
Dr. Lilli Nielsen
Dr. Lilli Nielsen is an internationally recognized expert on the
education of infant, preschool, and especially know for her work
with blind children with additional impairments. She has kindly
agreed to act as a referral source to educational personnel in many
countries outside the North American continent. You can reach her by
email at lillir@mail.tele.dk.
Dr. Nielsen can respond inquiries in English, Danish, and can read
German, but will respond in English.
Hadley School for the Blind
http://www.hadley-school.org
The Hadley School for the Blind offers courses specifically for
parents and grandparents of children who are visually impaired.
There is no charge for these courses or for the materials used in
the course. For more information or a course catalog, call (800)
323-4238 or email at hadley@theramp.net.
Helen Keller International (HKI)
www.hki.org
HKI is devotedto fighting and treating preventable blindness.
It has programs in 22 countries in Africa and Asia as well as the United
States.
Hilton-Perkins Program
www.perkins.org/international
The Hilton-Perkins Program provides children with the opportunity to
attend school and grow to their greatest potential. They partner
with local agencies worldwide.
Lions Clubs International
www.lionsclubs.org
Lions Clubs International is the world's largest volunteer service
organization. It consists of chapters in 205 countries with a
focus to helping individuals in their local area.
Malaysia Association for the Blind (MAB)
The mission of the MAB is to empower persons with visual impairment
by providing them with services & opportunities for greater
participation, involvement and integration into society as well as to
promote prevention of blindness.
www.mab.org.my
Norwegian Association of the Blind and Partially Sighted (NABP)
NABP organises activity-filled holidays, gatherings and camps all
over the country where children and youth with sight loss can meet on
their own terms.
NABP’s yearly summer camps for children and youth are very popular.
https://www.blindeforbundet.no/internett/english-info/english-info
Organiacion Nacional de Ciegos Espanoles (ONCE)
ONCE offers specialized social services for people with blindness or
severe visual impairment. It's mission is to provide personal
autonomy, education, employment, access to culture and sports, leisure
and holiday packages, care of the elderly, research and adaptation of
new technologies, and blindness prevention.
http://www.once.es/new/home/
Overbrook School for the Blind
Overbrook's International Program is aimed and training young
blind and low vision students between 16 and 20 years of age from
throughout the world through a one year intensive study program which
includes technology, written and spoken English, orientation and
mobility and leadership development.
www.obs.org
Royal National Association of the Blind (RNIB)
RNIB's work helps anyone with a sight problem, not just with
Braille and Talking books, but with imaginative and practical solutions
to everyday challenges. Their catalog of toys is quite extensive.
Servizio di Consulenza Pedagogica
Provides services for families of children who are blind,
deaf-blind, Down's Syndrome or autistic through correspondence
courses, summer programs and week-end programs. They can be
contacted at:
Dr. C. Salvatore Lagati,
Servizio di Consulenza Pedagogica
Via Druso 7
P.O. Box 601
38100 Trento, Italy
Tel/FAX 0039-0461-82.86.93
http://fondazione.vsi.it/index.php?option=com_content&task=view&id=12&Itemid=16
Swedish Association of the Visually Impaired (SRF)
SRF is a social organization aimed at achieving a society based
on equality and solidarity where the visually impaired can participate
on the same terms as everyone else.
www.srfriks.org/
Vision Australia
Vision Australia has tirelessly provided blindness and low
vision services for five generations of Australian kids.
http://visionaustralia.org/
MICHIGAN
Grand Rapids Area Parents of Visually Impaired
Kids (GRAPVIK)
awelscot@usxchange.net
A parent group composed of parents from the Grand
Rapids, Lansing and Northern part of the lower peninsula which meets
on the third Sunday of every month.
Michigan Parents o the Visually Impaired and
the Upshaw Institute for the Blind
http://www.upshawinst.org
The Michigan Parents of the Visually Impaired (MPVI)
is a statewide parent organization. They have regular meetings for
parents to talk and also family annual events. The Upshaw Institute
for the Blind is dedicated to reducing the impact of blindness and
advocating for those with severe vision loss. At their Website you
will find information relative to technology and to the Michigan
Parents of the Visually Impaired. There are also links to other
organizations. For further information contact them at their email
address - upshaw@wwnet.com
or phone them at (313) 272-3900.
Michigan Parents of Children with Visual
Impairments (MPVI)
A very active Michigan Parents' group. Their website will
provide information on all upcoming activities of the group:
http://www.mpvi.org
National Federation of the Blind - Parents of
Blind Children
The Michigan chapter Parent Group. For further
information contact: Dawn Neddo, President -
sdneddo@mailhost.det.ameritech.net
Penrickton Center for the Blind
Penrickton Center is a private non-profit agency
serving blind or multi-impaired children ages 1-12. Children under
six participate in a day care program. Penrickton is a home away
from home for the older children. There are no fees assessed to
parents. They currently have a ratio of one child care worker for
three children. They can be reached at (313) 946-7500 or by
FAX at (313) 946-6707. Visit their website at
www.penrickton.com
Children's Special Health Care Family Phone Line
All Michigan parents of children with special needs can
get information and emotional support by phone from a trained support
parent. Calls are free as part of the Michigan Community Health
Program. (800) 359-3722.
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