What can parents do?
1. Talk to your child.
You
must act as your child's eyes, telling him about the world around him.
A great example of this comes from the Association of Retinopathy of
Prematurity and Related Diseases, or ROPARD. "When you are in the
supermarket, explain to him what you have bought, let him feel the size
and weight of the objects. Talk about the difference in temperature as
you walk to the freezer aisles." This form of exploration can be done
with many other daily experiences.
2. Be consistent.
When
your child begins to graze along furniture or walks independently, try
to keep his environment familiar, that is, keep the furniture placement
the same so he can learn his way around by lay of hand.
3. Let him play.
Low
vision or blind children should be allowed the same experienced as a
typical child. Play with him outside, take him to the zoo and let him
feed the animals, finger painting can be fun as well.
4. Help outsiders understand.
Family
and friends may feel intimidated when interacting with your child. Ease
their worries by giving tips on how to do so. Verbal cues are very
important. For instance, my mother-in-law always greets Jacob by
holding his hand and saying "Hello Jacob, this is your Grandma." This
allows him to hear and feel his grandma's presence. Soon he will learn
the different voices of those close to him.
5. Take care of yourself.
"Sometimes
it is hard to remember that caregivers with a child who has special
needs often need to take care of themselves too. Allow yourselves the
right to take breaks from the daily need of caring for your child,"
another great tip from ROPARD.
Having
a preemie is tough for any parent, but when that preemie grows up with
a disability like vision loss, your strength is truly tested.
"We make the decisions that can affect our children's lives forever and that's the really hard part about being a parent of a preemie. C~Sturgeon
(Preemie Magazine)
Information for Parents
Social Security (SSI) information for children with disabilities
http://www.ssa.gov pubs/10026.html
The American Federation for the blind
http://www.afb.org
Ropards.org (The association of Retinopathy of Prematurity)
The low vision Gateway to the internet.
http://www.lowvision.org
The Lighthouse International
http://www.lighthouse.org
Blind Childrens Resource Center
http://www.blindchildren.org/
Special Needs Air Travel
Air Lifeline (877) air-life or www.airlifeline.org
American Airlines- Miles for Kids (817) 931-6890 or (817) 963-8118
Angel Flight
www.angelflightamerica.org/map.html
Delta Airlines - Skywish (877) 327-8211
Hope Air (Canada) 877-346-HOPE or mmail@hopeair.org
Miracle Flights for Kids: (800) FLY 1711
Northwest Airlines Request an Application:
Call (612) 726-4206 to request an application for KidCares travel.
Southwest Airlines (214) 792-4103 or (214) 904-4103
Contact: Tracie Martin
Twice a year for child and both parents
TWA Operation Lift Off (314) 895-5563
Contact: Liz Martin or Brian Zahorik
Virgin Atlantic (800) FLY-4-LES
Contact Ted Hollingsworth - Special Needs Depts and support
Hospitals and Pediatric Retina Surgeons
Eye Institute William Beaumont Hospital
Dr. Michael Trese Primary Office:
3533 W. 13 Mile Road
Royal Oak, MI 48073
Ph- (248) 288-2280
www.beaumonthospital.com
Bascom Palmer Eye Instiute (Miami, Fl.)
www.bpei.med.miami.edu
Dr. Audina Berrocal
305-326-6000
The Vision Center at Childrens Hospital Los Angeles
Dr. Thomas Lee
4650 Sunset Boulevard
P.O. Box 27980 Mailstop #88
Los Angeles, CA 90027-0980
www.TheVisionCenterAtCHLA.org
Phone: (323) 361-2347
Fax: (323) 361-3524
info@thevisioncenteratchla.org
Emory Eye Center (Atlanta, Ga.)
Dr. G. Baker Hubbard III M.D.
www.eyecenter@emory.edu
Ph (404) 778-2020
Duke University Eye Center (North Carolina)
DUMC Box 3802
Durham, NC 27710
Ph- (800)422-1575 or (919) 684-6611
www.Dukeeye.org
The Wills Eye Institute (Philadelphia, PA.)
Retina Service / Uveitis Unit
Suite 1020
Phone: (215) 928-3300
Fax: (215) 825-2443
Director: Gary Brown, MD
Co-Director: David H. Fischer, MD
Co-Director: Arunan Sivalingham, MD
Clinic Hours: Monday through Friday 8 am — 4:30 http://www.willseye.org
Wilmer Eye Institute at Johns Hopkins
(JH) Baltimore, MD
600 N. Wolfe Street
Baltimore, MD 21287
410-955-5080 http://www.hopkinsmedicine.org/wilmer/
If you are a professional and would like to be added to our list of sub specialists please contact the foundation.
