Eye Conditions and Functional Vision

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ARTICLES

Cass, H. D., Sonksen, P. M., & McConachie, H. R. (1994). Developmental setback in severe visual impairment. Archives of Disease in Childhood, 70, 192-196.
Ferrell, K., Trief, E., Deitz, S., Bonner, M. A., Cruz, D., & Stratton, J. M. (1990). The visually impaired infants research consortium: First year results. Journal of Visual Impairment and Blindness, 84(8), 404-410.
Good, W. V., Jan, J. E., De Sa, L., Barkovich, A. J., Groenveld, M., & Hoyt, C.S. (1994). Cortical visual impairment in children. Survey of Ophthalmology, 38, 351-364.
Hatton, D., & Model Registry of Early Childhood Visual Impairment Collaborative Group. (2001). Model registry of early childhood visual impairment: First year results. Journal of Visual Impairment and Blindness, 95(7), 418-433.
Jan, J. E. & Freeman R.D. (1998). Who is a visually impaired child? Developmental Medicine & Child Neurology, 40, 65-67.
Jan, J. E. & O'Donnell, M.E. (1996). Use of melatonin in the treatment of pediatric sleep disorders. Journal of Pineal Research, 21, 193-199.
Jan, J. E. (1991). Head movements of visually impaired children. Developmental Medicine & Child Neurology, 33, 645-647.
Jan, J. E., Carruthers, J.D., & Tillson, G. (1992). Neurodevelopmental criteria in the classification of congenital motor nystagmus. Canadian Journal of Neurological Sciences, 19, 76-79.
Jan, J. E., Farrell, K., Wong, P.K., & McCormick A.Q. (1986). Eye and head movements of visually impaired children. Developmental Medicine & Child Neurology, 28, 285-293.
Jan, J. E., Freeman, R.D., & Fast, D.K. (1999). Melatonin treatment of sleep-wake cycle disorders in children and adolescents. Developmental Medicine & Child Neurology, 41, 491-500.
Jan, J. E., Freeman, R.D., McCormick, A.Q., Scott, E.P., Robertson, W.D., & Newman, D.E. (1983). Eye-pressing by visually impaired children. Developmental Medicine & Child Neurology, 25, 755-762.
Jan, J. E., Good, W.V., Freeman, R.D., & Espezel, H. (1994). Eye-poking. Developmental Medicine & Child Neurology, 36, 321-325.
Jan, J. E., Groenveld, M., & Anderson, D.P. (1993). Photophobia and cortical visual impairment. Developmental Medicine & Child Neurology, 35, 473-477.
Jan, J. E., Groenveld, M., & Sykanda, A.M. (1990a). Light-gazing by visually impaired children. Developmental Medicine & Child Neurology, 32, 755-759.
Jan, J. E., Groenveld, M., Sykanda, A. M., & Hoyt, C.S. (1987). Behavioural characteristics of children with permanent cortical visual impairment. Developmental Medicine & Child Neurology, 29, 571-576.
Jan, J. E., Robinson, G. C., Scott, E., & Kinnis, C. (1975). Hypotonia in the blind child. Developmental Medicine and Child Neurology, 17, 35-40.
Moore, V., & McConachie, H. (1994). Communication between blind and severely visually impaired children and their parents. British Journal of Developmental Psychology, 12, 491-502.
Sonksen, P. M. (1993). The assessment of vision in the preschool child. Archives of Disease in Children, 68, 513-516.
Sonksen, P. M., Petrie, A., & Drew, K. (1991). Promotion of visual development of severely visually impaired babies: Evaluation of a developmentally based program. Developmental Medicine and Child Neurology, 33, 320-335.

BOOKS

Dickerson, M. L. (2000). Small victories. New York: American Foundation for the Blind.
Shelton, T. L., Jeppson, E.S., & Johnson, B.H. (1987). Family-centered care for children with special health care needs. Washington, D.C.: Association for the Care of Children's Health.

SPECIFIC EYE CONDITIONS

Achromatopsia
The Achromatopsia Network
P.O. Box 214
Berkeley, CA 94701-0214
http://www.achromat.org

Albinism and Hypopigmentation
NOAH (National Organization for Albinism and Hypopigmentation)
1530 Locust St., #29
Philadelphia, PA 19102
800-473-2310
http://www.albinism.org

Aniridia
The Canadian Foundation for Aniridia Research
3780 Verdun Avenue, Suite 2
Montreal, Quebec, Canada
H4G 1K6

Anophthalmia
International Children's Anophthalmia Network
Albert Einstein Medical Center
5501 Old York Road
Philadelphia, PA 19141
800-580-4227
215-456-8722
http://www.ioi.com/ican/Default.htm
http://www.angelfire.com/mi/microphthalmia/map.html

Cataracts
Parents of Cataract Kids
179 Hunter Lane
Devon, PA 19333
215-293-1917

General
(The) Foundation Fighting Blindness
Executive Plaza 1, Suite 800
11350 McCormick Road
Hunt Valley, MD 21031-1014
800-683-5555
800-683-5551 (TDD)
410-785-1414
410-785-9687 (TDD)
http://www.blindness.org

General
National Organization for Rare Disorders
P.O. Box 8923
New Fairfield, CT 06812-8923
http://www.rarediseases.org

Glaucoma
Children's Glaucoma Foundation (CGF)
2 Longfellow Place, Suite 201
Boston, MA 02114
http://www.childrensglaucoma.com/

Glaucoma
Glaucoma Research Foundation
490 Post St., Suite 830
San Francisco, CA 94203
800 826-6693

Glaucoma
Glaucoma Support Network
Glaucoma Research Foundation
200 Pine St., Suite 200
San Francisco, CA 94104
800-826-6693
http://www.glaucoma.org

Macular Diseases
Association for Macular Diseases
210 E. 64th Street
New York, NY 10021
212-605-3719
http://www.macula.org/

Macular Diseases
Macular Degeneration International
6700 North Oracle Road, Suite 121
Tucson, AZ 85704
800-393-7634
520-797-2525
http://www.maculardegeneration.org/

Macular Diseases
Stargardt Macular Dystrophy and Other Juvenile Macular Dystrophies Self Help Network
C/o Macular Degeneration International
2968 West Oma Road, #106
Tucson, AZ 85741
800-393-7634

Optic Nerve
International Foundation for Optic Nerve Disease (IFOND)
P.O. Box 777
Cornwall, NY 12518
845-534 7250
http://www.ifond.org/

Retinitus Pigmentosa
Foundation Fighting Blindnesss
Executive Plaza 1, Suite 800
11350 McCormick Rd.
Hunt Valley, MD 21031
888-394-3937
http://www.blindness.org

Retinoblastoma
National Retinoblastoma Parent Group
P O Box 317
Watertown, MA 02272
800-562-6265
617-972-7441

Retinopathy of Prematurity (ROP)
Prevent Blindness in Premature Babies
P O Box 44792
Madison, WI 53744-4792

Retinopathy of Prematurity (ROP)
The Association for Retinopathy of Prematurity and Related Diseases
(ROPARD)
P.O. Box 250425
Franklin, Michigan 48025
800-788-2020
http://www.ropard.org

Septo-Optic Dysplasia
FOCUS: For Our Children's Unique Sight
2571 Pico Place
San Diego, CA 92109
619-273-1473
http://www.focusfamilies.org/


VIDEOS


Visually Impaired Preschool Services in Louisville, Kentucky has produced the following videos (from the Can Do! Series)
Through Their Eyes: An Introduction to Low Vision   $49.95
This video discusses several common causes of low vision, how they affect visual functioning, and adaptations that can be incorporated simply into home and classroom to meet the special needs of children who have low vision. (13 minutes)
VIPS
1229 Garvin Place
Louisville, KY 40203
Attn: Can Do Series
888-636-VIPS
http://www.vips.org



The Visually Impaired Program of the Children's and Women's Health Centre of British Columbia has produced
Cortical Visual Impairment in Young Children
This award winning video covers many aspects of cortical visual impairment including possible causes, visual stimulation, positioning, and other intervention strategies.
(16 minutes)
Help Your Child See
This video provides specific information on the different stages of visual development in young children. It also provides suggestions that caregivers can incorporate into daily routines to optimize their child's visual functioning.
Visually Impaired Program
Attention: Jo-Anne Chiasson or Michelle Graham
Sunny Hill Health Centre for Children
3644 Slocan Street
Vancouver, British Columbia
Canada
V5M 3E8
(604) 453-8300
http://www.cw.bc.ca

Precision Vision has produced
Cerebral Visual Impairment in Pre-School Age   $40.00

Dr. Lea Hyvarinen demonstrates assessing functional vision in infants and toddlers who have cerebral visual impairment or what is commonly referred to as cortical vision impairment. She uses many of her own materials, covers important information such as positioning, using natural environments, allowing adequate time to assess children's vision, and the need for transdisciplinary assessments. The video allows the viewer to see how the children use their eyes and vision, and how Dr. Hyvarinen's recommendations make a difference. The audio portion of this video lacks clarity, but otherwise this is a good source of information about CVI and functional vision assessments.


Precision Vision
944 First Street
La Salle, IL 61301
815-223-2022
Fax: 815-223-2224
E-mail: precisionvision1@home.com

WEBSITES

American Association For Pediatric Ophthalmology and Strabismus. The AAPOS web site is primarily for medical personnel though there is a wealth of information of interest to parents and teachers, especially through the Public Information link. The Journal of the AAPOS is available on-line through the site with abstracts and some articles free while others require a paid subscription. http://www.aapos.org/
American Printing House for the Blind, Inc . APH is the world's largest company devoted solely to creating products and services for people who are visually impaired. Their publications, assistive devices, and materials are available through catalogs and on line at . http://www.aph.org
Association for Education and Rehabilitation of the Blind and Visually Impaired. AER is an international membership organization of professionals who work in all phases of education and rehabilitation of blind and visually impaired children and adults. http://www.aerbvi.org
Blind Babies Foundation. Fact sheets on CVI (also available in Japanese), ROP, retinal diseases, optic nerve hypoplasia, and albinism are available in the Goodstarts section of this web site. http://www.blindbabies.org
Closing the Gap, Inc. This organization focuses on computer technology for people with special needs through its bi-monthly newspaper, annual international conference and extensive website. http://www.closingthegap.com
Country Hills Eye Center. A group of eye physicians and surgeons located in Ogden, Utah provide a technical, informative and complete description of causes, manifestations, and treatments for retinopathy of prematurity. http://www.konnections.com
DB-Link DB-Link, The National Information Clearinghouse on Children Who are Deaf-Blind . There are a few articles regarding assessment of infants and toddlers who are deaf-blind. Look at the Assessments and Early Intervention sections. http://www.tr.wou.edu/dblink/
Department of Pediatric Ophthalmology at The Children's Hospital of Buffalo. This website offers an overview of a pediatric eye exam and gives medical information on a number of prevalent eye conditions found in the children. http://www.smbs.buffalo.edu/oph/ped/index.html
Early Childhood Curricula and Resources. The Texas School for the Blind and Visually Impaired offers an extensive bibliography of resources that pertain to early intervention for children with visual impairment/blindness http://www.tsbvi.edu/bib/early.htm
Focus for Our Children's Unique Sight . This is a parent-driven site with information about optic nerve hypoplasia and septo-optic dysplasia, both in terms of vision and other concerns that often accompany these eye conditions. http://www.focusfamilies.org/focus/events.asp
Low Vision Gateway. This site is not directed specifically at infants and toddlers, but has descriptions of many eye conditions and related support groups. http://www.lowvision.org/disease.htm
Magic Foundation. A thorough description of septo optic dysplasia and other concerns related to this eye condition. http://www.magicfoundation.org/www

Glaucoma
(The) Glaucoma Foundation
116 John Street, Suite 1065
New York, NY 10038
800-452-8266
212-651-1900
sglaucomafdn@mindspring.com
http://www.glaucoma-foundation.org/


OTHER

Ferrell, K. (1998). Project PRISM: A longitudinal study of developmental patterns of children who are visually impaired [Final Report]. Greeley, CO: Division of Special Education, University of Northern Colorado.

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