Blindness & Visual Impairment Resources

Blindness and Visual Impairment Resources

Thomas has Persistent Fetal Vasculature Syndrome. You can find out more about this disease at ROPARD, the Association for Retinopathy of Prematurity and Related Diseases. I can spend hours looking at the collection of helpful links they have on this site.

The Blind Childrens Center has an excellent collection of publications that are reasonably priced. I just found this site and can’t wait to order some. They have books on feeding, movement development, preschool and social play, speech, and more.

FamilyConnect is a great online community/message board created by the

American Foundation for the Blind  and the National Association for Parents of Children with Visual Impairments.
Check out Wonderbaby for lots of information on raising blind children. So many great ideas can be found here.

Parents should check out the Congenital Glaucoma Network for support and information.
National Federation of the Blind – This organization is blind people working to help other blind people. They know what they are talking about and offer amazing support and services. I have mentioned both their Free White Cane Program and their Early Explorers Program in blog posts.
Make sure you subscribe to Future Reflections magazine! I look forward to each and every issue. It is a quarterly magazine published by the American Action Fund for Blind Children and Adults in partnership with the National Organization of Parents of Blind Children. Most of the articles are written by parents and the subjects are all the daily living and life choices we face as parents of blind children. I learn something from every issue. The message is always one of hope and possibility for all blind children. You can get a print copy by emailing  ParentOutreach@nfb.org (Put subscribe to FR in the subject line.)
The Hadley School for the Blind – Hadley offers free, distance education courses and seminars for parents, grandparents and other family members of visually impaired children through their Family Education Program. Contact them toll-free: 800-323-4238. Sign up for their email newsletter.
Braille Institute’s – Child Development Downloads for Parents. Awesome ideas and information can be found here. They cover language, sensory, fine motor skills, environmental adaptions and even instructions to make simple toys!
VICurriculum.org – The Maryland School for the Blind’s website for Preschoolers. Be sure to check out the Activities for Home and Tips from the Trenches.

Facebook Resources

Facebook Groups

MAPS MOMS – Microphthalmia/Anophthalmia Parent Support Group. This is an active group with lots of information. You can find a list of blogs and the locations of members so you can connect with people in your state to get resource info. These are located in the file section of the group’s page.

 

People with Persistent Hyperplastic Primary Vitreous (PHPV) Unite! This group is mostly for parents of children with PHPV. It’s fairly active and you can find good info and support.

Braille Book Sources - including Free programs

American Printing House for the Blind 

E-Mail: info@aph.org

Your TVI (Teacher of the Visually Impaired) should obtain materials for your child from APH like a lightbox and lightbox accessories, braille children’s books and other early learning materials.

 

As a blind/visually impaired child, he or she is allotted “federal quota funds” which can be used to purchase these items from the APH. Ask your TVI about obtaining these items for your child!

 

Braille Books for Children – a large selection of children’s books in braille. They are quite affordable and ship quickly.

 

BRL offers print/Braille children’s books at a very affordable cost. These “twin vision” books allow sighted family members to enjoy books with their blind children. Clear plastic strips of Braille are added to print books so everyone can enjoy.

 

Dolly Parton’s Imagination Library

The Dollywood Foundation and the American Printing House for the Blind (APH) are partnering to provide young blind and VI kids with print/Braille books. This is a great program! Children get five free print/Braille books each year until their sixth birthday. These are beautiful books. Sign up today!

 

National Braille Press ReadBooks Program 

National Braille Press, along with Seedlings Braille Books for Children, is distributing braille book bags to families with blind and visually impaired children ages birth to seven, across the U.S. and Canada. (One Bag per child please!)

You get:

  • A free Braille book
  • Just Enough to Know Better – a great braille primer for sighted parents
  • a tactile ball or Wikki Stix
  • Braille/Print Bookmark and Braille/Print Alphabet card
  • Braille Caravan block
  • Tactile alphabet letter sheets showing up case, lower case, and braille.
  • Coupon for another free book and more!

These are the resources I use to get books for Tom. Check out a more complete list here.

General Special Needs Websites

Friendship Circle Blog – A blog for special needs parents and teachers. Great articles and resources and information can be found on this site.

Parenting Special Needs Magazine This is a cool magazine. Find great information and real stories from parents of children with special needs.

Complex Child Magazine Tell your story and share your experience with other parents. It is very healing and healthy to express yourself and it makes one feel good to share information that helps others. This online magazine is written by parents and for parents of kids with special needs. I find truly helpful information and insight here every month. I have also contributed!

Feeding Tube Resources

http://www.feedingtubeawareness.com/  There is so much helpful information on this site. They also have an amazing group on facebook that is like an online support group. So helpful!

Watch this awesome video of kids that have feeding tubes! http://www.youtube.com/watch?v=FtXf8hKNOmE
http://www.childrenandbabiesnoteating.com/index.html  I wish I had found this when Thomas began having feeding issues. You can find so much good information and advice on this site.
New Visions is a great website for information about tube feeding and teaching your little tubie to eat. You can also connect to the mealtimes online store here to buy useful feeding aids. We have some special spoons and a nuk brush for oral stimulation that can be purchased here. In the Feed your Mind section you can find lots of useful articles.

Pennsylvania Resources

 

If you think your child is not meeting his or her developmental milestones get a free evaluation for Early Intervention from the Alliance for Infants and Toddlers (in Allegheny County.) You can also ask your pediatrician for a referral.

Achieva – Early Intervention provider in Southwestern PA.

Medicaid – Birth to 3 waiver program in Pennsylvania

After age 3 Medicaid Waiver program in Pennsylvania

Allegheny Intermediate Unit (IU3) DART Program – Early Intervention services for ages 3-5 in preschool settings. Includes Occupational, Physical, and Speech and Language Therapies and family services in Allegheny County outside the city of Pittsburgh. If you are in the city of Pittsburgh the Pittsburgh Public Schools handle their own early intervention for 3-5.

The Children’s Home and Child’s Way Daycare – Tom almost went to Child’s Way daycare for medically fragile children ages birth to eight. It is not easy to find someone who can care for a child with a g-tube.

Children’s Institute of Pittsburgh – Tom went to the Functional Feeding Program at the Children’s Institute of Pittsburgh for over a year. He went from eating 5% by mouth to over 50%. It was the jump we needed and they care Tom deserved. This place is amazing! They offer many programs and a day school. Check the website for more info.

Children’s Hospital of Pittsburgh of UPMC – Tom sees many specialists here at the Children’s Hospital of Pittsburgh. He is followed by the Eye Center here and got his g-tube placed at this hospital.

Western Pennsylvania School for Blind Children – Tommy is a preschool student here and goes to their daycare during the summer! He loves school. It is an approved private school for kids 3-21 with visual impairment, with or without additional disabilities.

WIC – Women, Infants and Children – We got Tommy’s expensive medical formula for his g-tube feedings through WIC.

 

 

 

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