Browse By Topic: News from FamilyConnect

The Indelible Impact of Louis Braille

When I decided to go back to school to become a teacher of students with visual impairments, I shared my decision with a friend and teacher’s assistant in special education for over 21 years. While her class is not specifically for students with visual impairments, she has always made a point to read the story of Louis Braille to her students and to use it as an example


Holiday Gift Ideas for Children and Teens with Visual Impairments, a Round-Table Discussion

One of my favorite things about our FamilyConnect community is the opportunity to brainstorm together. While we may not have the chance to get together with a group of local friends who are parents of similar age children with visual impairments, we have the ability to do so right here. While sometimes we convene over IEPs, potty training frustrations and college-readiness skills, today we get to focus on a less stressful,


New Article: Creating a DIY Tactile Map for Your Child Who Is Blind or Visually Impaired

You want to intentionally teach your child orientation and mobility skills, so you invite your child who is blind or visually impaired on motivating excursions such as practicing a trick-or-treat route or walking to the neighborhood park. To help your child orient to the area and to provide instruction in utilizing a map, you decide to create a tactile map. But let’s face itif, like me, you’re lacking a crafty side, the thought of creating a map that your child who is


New Article: How to Master Cardinal Directions

You intend to teach your child who is blind or visually impaired orientation and mobility concepts, so you’d like to use compass/cardinal directions to state which direction you’re driving or walking. The only problem is, if you’re like most, cardinal directions aren’t exactly on your list of things mastered. The temptation arises to simply let the mobility specialist help your child master this technique in due time. <img


FamilyConnect’s Latest Article Series: Orientation and Mobility for Blind and Visually Impaired Babies, Preschoolers, Grade Schoolers, and Teenagers

If your child is blind or visually impaired, your child’s education (from birth through the completion of high school) should include more than the core curriculum. It should include the expanded core curriculum, which provides your child with the skills needed to not only access the core curriculum but also to live a satisfying


New Diagnosis? The Most Common Questions Asked by Parents of Children with Visual Impairments

You’re here because your child has recently been diagnosed with an eye condition. You likely weren’t at all prepared for the emotional impact of the diagnosis, you certainly can’t foresee coping with vision loss, and you don’t understand what to do next. You feel consumed with questions; lost at sea. <img src="http://www.afb.org/image.ashx?ImageID=8593" alt="A mother and father holding their small child during an eye examination at the doctor's office; the doctor is looking at the child and holding up three fingers for the baby


Attending Conferences for Parents of Children with Visual Impairments

I’d like to initiate a dialogue regarding attending conferences for parents of children who are blind or visually impaired. On behalf of parents who have not attended a conference of the sort, and for my own interest, perhaps former attendees would be willing to answer the following questions: Which conference or conferences did you attend? What were your expectations of the conference? Were your expectations met? What did you gain from the experience? Would you attend again? Whether you have attended a conference presented by the National Association of Parents of


FamilyConnect’s Latest Article Series: Delayed Communication Development in Blind and Visually Impaired Children

This past week I enthusiastically attended American Foundation for the Blind’s leadership conference just outside of Washington, DC. Since returning home to Delaware, I have been reflecting on which message or session was the most personally impactful of the event; I choose the words of Linda Hagood, Speech Language Pathologist of Washington State School for the Blind. Ms. Hagood spoke on teaching students who are blind or visually impaired and autistic or are otherwise communicatively delayed. She began by addressing typical approaches to educational programming: symbol systems,


AFB FamilyConnect Message Boards: Why and How to Use Them

You already know, blindness and visual impairments are low incidence disabilities. Most likely, you, parents and family members of babies, children, and teens with vision loss, are undertaking the parenting journey alongside few other (or no other) parents of children with vision loss. As such, I want to make you aware of one avenue to support and connect with each other: AFB FamilyConnect’s Message Boards. Why They’re Useful You have questions. Perhaps some include:


An Introduction to Your Child’s Specific Eye Condition

You are told your child may have a visual impairment; your world halts. You are left with questions and an emotional roller-coaster. You want to know: A description of the possible eye condition How it is diagnosed If there are treatments How it affects one’s eyesight How one functions with this eye condition Resources for families Where to Turn If this describes you, it’s time to visit AFB FamilyConnect to


Share Your Story to Help Others

If you’re part of the FamilyConnect community, you’ve undoubtedly seen some of the stories we’ve shared about families of children with vision loss. Chances are, you’ve been inspired. At the very least, you felt less alone knowing that others face the same challenges you do. And hopefully, you also learned about resources and ideas that help with your family’s daily life at home, at school, and in your community. We know how valuable these stories are to families, and we want to share more of them. We’ve started a project to do just that—and


Hand in Hand, FamilyConnect, WonderBaby and You Can Increase #CVIawareness

This week, we’re taking social media by storm. FamilyConnect, WonderBaby, and you will shine the light on Cerebral Visual Impairment (CVI); we’ll draw attention to what it is, discuss misconceptions, offer resources, provide encouragement to fellow parents, and share our children’s stories. Here’s how it works: Impart your knowledge, experience, and/or child’s picture pertaining to CVI on social media and use the


Parents Helping Parents: CHARGE Syndrome Tele-Support Group

We are pleased to introduce you to another Tele-Support Group and encourage you to participate as it is a great way to meet others to provide both support and information. By Sheri Stanger Time passes so quickly. One moment you’re holding your newborn baby - receiving a diagnosis that changes your world. You’re incredibly busy – the medical, educational and therapeutic world consuming much of your energy and then suddenly you find yourself with an adult. As the parent of a 22 year old daughter with CHARGE syndrome, a rare congenital disorder and one of


Dads, You Are Adored; Happy Father's Day

Oh, dads! Do you know how treasured you are? I hope you do, but something tells me you are in the dark. I think about my entire childhood in hopes of capturing my fondest memory, and do you know what it is? None other than my dad reading to me before bedtime. He read the Chronicles of Narnia series and the Mandie collection for sure, but the rest are forgotten. It wasn't the books I valued, but the time with my dad that encapsulated all that was right in the world. Whether through wacky outdoor games (like the shaving cream slide leading to the baby pool as described by David Hyche in


Telephone Support Group for Hermansky-Pudlak Syndrome

Today we are featuring another telephone support group provided by the Lighthouse Guild's NAPVI program. My name is Lilly Jackanin. I am the Group Facilitator for a Parent Tele-Support Group for parents of children afflicted with a condition known as Hermansky-Pudlak Syndrome. I would like to share information about our group that has been established to address this genetic disorder. This condition is highly prevalent on the island of Puerto Rico; however, it has been found in many other countries, including China, the UK, and numerous South American nations. What is HPS? Hermansky-Pudlak Syndrome (HPS) is a genetic metabolic disorder which causes albinism and can also cause visual impairment and a platelet dysfunction with prolonged bleeding. In


Keeping Children in Sight: A Free TeleSupport Group for Parents of Children Diagnosed with Glaucoma

Hello! I'm Catherine Duffek. I am now in my early 70s and I grew up with congenital glaucoma. I lead an active productive life and happily I still have my vision! To keep this vision my parents taught me their recipe for monitoring my glaucoma. It's simple never become complacent about the signs and symptoms of elevated intraocular pressure. It's now January when we observe "Glaucoma Awareness Month." I thought this might be a good time to


October Is National Disability Employment Awareness Month

October is National Disability Employment Awareness Month and we plan to give you information throughout the month on employment issues. The path to employment begins at home as well as in school and that destination may now seem far away. The promotion of skills and independence are criticalfactors in this process and begin at an early age. Last year we brought you the series of articles in the Transition to Independence section of each age range including; We start with Babies and


Seeking Family Members for a Focus Group Study on Unified English Braille eLearning Platform

Editor's note: This is the second blog entry that both informs and requests the assistance of families in answering important questions that impact all who use braille. Please help Holly Lawson and Kathryn Botsford with this effort. Unified English Braille (UEB) is almost here... Braille is getting a makeover. In January 2016, students, adult consumers, their teachers, and their families will be starting to learn changes to the braille code with the United State’s adoption of the Unified English Braille (UEB) code. UEB Prep At Portland State University (PSU) we realize that not everyone learns best


More Back To School

Back to school is an important day and issue for children and families. We have been posting on the subject but I wanted to take a moment and share a few items posted on various AFB programs. I Hope you have had or will have a smooth transition back into the school year. An adult reminds us of how things once were in Going to School With the Dinosaurs. Everyone should sign up for the free AFB publication AccessWorld Magazine. The July edition featured Back to School! You can signup to receive and


NAPVI National Conference for Families

We have just returned from the National NAPVI conference for families held this past weekend in Chicago. We were so grateful to meet parents and teachers from around not only the country, but the world. (Kudos to the mother, aunt, and baby who traveled all the way from Australia!) The message families gave us is that they need for more information on everything from dealing with bullies, to coping with the frustration and social challenges of being a non-driver. With so many great ideas, we will be working to add to our current collection of articles in both English and Spanish. There were so many speakers and topics that there was something for


Highlights From the Upcoming NAPVI Family Conference Program

Join Us! July 10-12, 2015 Chicago, Illinois Dear Families, We are just two weeks away from the NAPVI National Family Conference to be held in Chicago. It's not too late to register and join us! Come and meet www.FamilyConnect.org bloggers, authors, and web team for a special networking seminar for FamilyConnect members held on Friday afternoon 2:00-4:00 pm at the Chicago Marriott at Medical District/UIC Hotel. Come and give your feedback for the further development of FamilyConnect and learn how you can be involved! Here are some of the other conference


Join Us at the NAPVI National Family Conference in Chicago!

Dear Families, Join us at the NAPVI National Family Conference and make a vacation around the conference program. Chicago is beautiful and there is so much for families to do. The conference hotel is in the Little Italy and Greek Town neighborhood with over 50 restaurants and bars in walking distance! It's also central to public transportation to see other parts of the city and to/from the airports. Take advantage of


Finding the Funds to Attend the NAPVI Family Conference

Dear NAPVI Friends and Fellow Parents, When my son was 10 months old, he was diagnosed with a rare infant eye cancer, retinoblastoma. I was devastated, and desperate to meet other parents who were having this experience. I wanted to learn more about my child’s eye condition and how his visual impairment was going to affect his learning and I also wanted to learn what I could do to encourage his development. I learned about


Register Now for the International Family Conference!

We are organizing a phenomenal conference program for you and your family. The conference welcomes parents of children of all ages with visual impairments, blindness, and additional disabilities including siblings and extended family and friends. Early registration is now open! The conference location is at The Chicago Lighthouse for People Who Are Blind or Visually Impaired, close to the conference hotel. The


FamilyConnect 2014 Holiday Guide Now Available

It is that time of year again that brings both joy and boundless levels of stress. We have put together a Holiday Guide for Parents of Children Who Are Blind or Visually Impaired that will help you get through the season. Trying to find that perfect gift for your child who is blind? On the Holiday Guide we have collected several articles with tips and specific toy ideas. For that teen or adult you should browse the holiday issue of AFB's


Celebrating White Cane Day

October is a month of celebration! National Disability Employment Awareness and National Hispanic Heritage Month are two examples, and let’s not forget Halloween.


FamilyConnect Celebrates National Hispanic Heritage Month

We are right in the middle of National Hispanic Heritage Month, which runs from September 15 to October 15. It is a time to celebrate the history and contributions of this important culture. We would like to take this opportunity to point out that FamilyConnect has translated its articles into Spanish and users of the program may easily switch from English to Spanish in one click of a buttonuse the en español link at the top of any page, or the "Leer este artículo en español" link on individual articles. You can also get started easily with these three downloadable toolkits:


Being Organized Helps Prepare Parents of Children Who are Blind or Visually Impaired

Every fall the circus returns. It can become the major focus of many families for years. The entry parade is exciting, noisy, confusing, long, and a little bit scary. As the circus gets underway each act takes the breath away. The jugglers handle too many things all at once, trying not to drop anything. The crazy fire eaters swallow amazing amounts of strange things, the clowns (who aren’t really funny) are distracting, and the elephants incredibly perch on a tiny surface while balancing on only one foot. And all the while the high wire acts have people suspended frighteningly high above and acrobats swinging through the air desperate to catch hold of support. It is all just a little bit crazy and looks out of control. It is fall and our circus is here again.


Celebrating Low Vision Awareness Month

Low vision devices help this student keep up with classwork. February is Low Vision Awareness Month and we would like to take advantage of that to highlight some of the information we have on the FamilyConnect site that explains just what low vision means. The term low vision has come to describe individuals who have some useful vision that can assist in seeing things like large print and pictures. The scope of who would be considered "low vision" is very broad and can mean many things to different people. It may


Happy Birthday, Louis Braille!

In honor of what would have been Louis Braille's 205th birthday, we asked parents and educators to reflect on the importance of his braille code in their children's lives. Emily Coleman writes about Why Those Dots Are Important to Me Susan Harper, a home-schooling mom and frequent guest blogger, writes about What Braille Means to Our Son and Family Dr. Kay Ferrell, who monitors FamilyConnect's Parents of


FamilyConnect Has a New Look!

We are excited to introduce FamilyConnect's new look today. AFB and NAPVI have redesigned the site with input from the families who use it. On the new home page you may connect with others, jump on the message boards, read current news, follow our blogs, and more. One of the main changes is that the top of the page a persistent navigation bar now makes it easier to discover the depth of information FamilyConnect offers. And with the home page slideshow you can quickly find out what is happening in our world. Over on the right, within the blog area, you'll see a new


FamilyConnect Celebrates National Hispanic Heritage Month

In honor of National Hispanic Heritage Month (September 15-October 15), we wanted to highlight the resources FamilyConnect offers for Spanish-speaking families. In a hurry? Want to share FamilyConnect's information with a friend or family member who doesn't have easy access to the Internet? FamilyConnect has printable toolkits, available in both English and Spanish, that offer the crucial information families need to know after the diagnosis. On FamilyConnect you will also find hundreds of articles in Spanish that will help you guide your child to the life he or she desires. Just use the "en español"


Volunteering at the NAPVI Family Conference

We are delighted to reprint with permission a blog post that gives a unique volunteer perspective on the recent family conference! The author, Chantal Mendes, volunteered taking care of the kids at the children's program. She describes herself as follows: "I started out as a journalist, became a scientist and am now happily a mix of the two. I currently do clinical research at Partners HealthCare and just applied to medical school, wish me luck!" This blog post originally appeared on her Journalist Doing Science blog. By Chantal Mendes This weekend I volunteered at the NAPVI family conference for parents of visually impaired children that was organized


Highlights from the 2013 Families Connecting with Families Conference

We are still recovering from this year's Families Connecting with Families Conference, which was such a great experience! Parents and their children who are blind or visually impaired, including those with additional disabilities, networked with other families throughout the United States, coming together in a beautiful constellation of strength and hope, as Anne put it so well. The "Eye Condition Networking" lunch was again one of the most popular sessions, and the Children's Program offered terrific opportunities for children of all ages, including siblings. Their activities included: Beep baseball training courtesy of the Boston Renegades Music therapy


Celebrate Healthy Vision Month This May!

Millions of people living in the U.S. have undetected vision problems and eye diseases. To bring attention to the importance of early detection and treatment, the National Association of Parents of Children with Visual Impairments is working with the National Eye Institute, part of the National Institutes of Health, to celebrate Healthy Vision Month. Held each May, Healthy Vision Month encourages all Americans to get a dilated eye examone of the easiest and most important things you can do to protect your vision.


Three New Hosted Message Boards on FamilyConnect

We are delighted to announce the introduction of three new hosted message boards on FamilyConnect. The topics are the Parents of Infants and Toddlers board moderated by Kay Ferrell, Education moderated by Susan Spungin, and


Happy Holidays From FamilyConnect!

It's the time of year again when we all face the task of finding the perfect gift for our children and loved ones. It can be especially difficult to find toys that will be a real winner with our children who are blind or visually impaired when so many toys require vision to enjoy them. We have assembled some information that could help you in that search for toys that your child who is visually impaired will enjoy. There is also information on how to plan activities to


White Cane Day: "Baby, You’re a Firework, Let Your Colors Burst"

The ability to travel independently is important to the ultimate success of people who have vision loss. The white cane is not only a tool but is also a symbol for independence. Today we celebrate International White Cane Safety Day with these reflections from Joe Strechay. By Joe Strechay It's that time of year again, and I think it is time to "let it shine," as Katy Perry sings in her hit song, "Firework," which strikes me as a good anthem for this year's White Cane Day. I am Joe Strechay and I am the American Foundation for the Blind's CareerConnect Program Manager.


High Excitement Abounds at Space Camp

Hi. I'm Scott Truax, and I have the privilege this week to be serving as a chaperone for kids attending SCIVIS (Space Camp for Interested Visually Impaired Students), a week-long camp that takes place at the US Space and Rocket Center in Huntsville, Alabama. The camp has been in operation for 23 years. Everything here is marked in braille, and all materials and equipment used during missions are available in braille and large print.


FamilyConnect Celebrates National Hispanic Heritage Month

In honor of National Hispanic Heritage Month (September 15-October 15), we wanted to highlight the many resources FamilyConnect offers for Spanish-speaking families. In a hurry? Want to share FamilyConnect's information with a friend or family member who doesn't have easy access to the Internet? FamilyConnect has printable toolkits, available in both English and Spanish, that offer the crucial information families need to know after the diagnosis. On FamilyConnect you will also find hundreds of articles in Spanish that will help you guide your child to the life he or she desires. Just use the "en


Raising the Money to Attend a Parenting Conference: Weighing the Options

It was in 1989, shortly after my son Alex was diagnosed with retinoblastoma, a rare form of infant eye cancer, when I read this article about ideas for getting a sponsorship to attend a National Conference of the National Association for Parents of Children with Visual Impairments, (NAPVI). The same day that we were told that our son had a blinding and life threatening condition, we were told by our insurance company that our son was not covered under our health insurance plan. Needless to say, being a family of five, struggling to make ends meet,


Please Join Us in Boston, MA, at the Families Connecting with Families International Conference: Register Online Now to Save Money!

Dear NAPVI Members and FamilyConnect Friends, We hope that you are making plans to join us in Boston, Massachusetts, from July 27- 29, 2012, for the Families Connecting with Families International Conference. The National Association for Parents of Children with Visual Impairments (NAPVI) along with parents, organizations and schools for the blind has been organizing a phenomenal conference program for you and your family. The conference welcomes parents of children with visual impairments, blindness, and additional disabilities of all ages, including


Sessions Planned for the Families Connecting with Families Conference in Boston

We're very excited about the agenda for the upcoming Families Connecting with Families Conference this summer. Here are just a few of the highlights: Internationally recognized expert Christine Roman will give an overview of what every parent should know about cortical vision impairment (CVI) Marla Runyan, the Olympic track star who is visually impaired, will give a keynote speech Friday night We'll have several exciting panel discussions, including ones for dads, teens, and siblings Varias sesiones serán ofrecidas


Update on the Great Activities for Children at the Families Connecting with Families Conference 2012

We know that when parents are considering attending a conference for families of children with visual impairments, the very first consideration is: "How will I make sure that my kids are happy, occupied, and well cared for?" We are very excited to report on the excellent childcare arrangements as well as sports and leisure activies planned for the upcoming 2012 Families Connecting with Families Conference in Boston, MA. Many thanks go to our wonderful Children's Programs Committee Chairs, Mike Pecorella and Lauren Lieberman. Your infants will be thoroughly cuddled and cared for in two spacious suites. Infant and toddler games and


FamilyConnect Launches Social Networking for Parents of Children with Visual Impairments

We are delighted to announce to our FamilyConnect community that today we have launched a new social networking feature called Family Friends! (Thanks to all of you who voted and helped name this new feature.) As of today you can create your own personal profile, upload a photo, share your news, and become friends with other parents like you that are registered on www.FamilyConnect.org. If you are already a registered user of FamilyConnect, here's how to get started: Log in to FamilyConnect Go to the Edit Your


Help Name FamilyConnect's New Social Networking Features

We are excited to announce that we are soon going to be launching new social networking features on FamilyConnect.org! As the parent of a visually impaired child (now adult) and through my years of hosting NAPVI meetings, I know that it is an amazing experience when parents of children with visual impairments are able to reach out to each other, and share resources on raising their children from birth to adulthood. We wanted to make that experience more readily available to parents. By the end of the month, FamilyConnect members will be able to opt into a new set of features that will allow you to: create and manage your own


We're on Facebook!

We've recently been diving into the world of social media by conducting focus groups on the additional social-networking features parents would like to see added to FamilyConnect. In the coming year, we will be adding tools that allow you to connect more closely with the people you have met on the FamilyConnect message boards, and to meet new people who share your situation and daily concerns. In that same spirit, we've now joined Facebook. If you already have a Facebook account, we hope you will find this a useful way of getting news from FamilyConnect and communicating with us, too. Please consider becoming a "fan" of


Join Us at the International Family Conference: Families Connecting with Families From Around the US and the World!

It's not too late to join us at the International Family Conference that will be held in Costa Mesa, California, July 17-19, 2009! The excitement for the conference is heating up! To date we have families registered from 28 states, Puerto Rico, and 5 countries: Bahamas, Canada, England, Philippines, and Uzbekistan. The conference program includes 2 stellar keynotes, 40 workshops on a wide variety of topics, 22 eye condition networking sessions, family events, and receptions, all with great food included in the low-cost registration fee! An incredibly comprehensive children's


FamilyConnect Named a "2008 Outstanding Product" in the iParenting Media Awards

AFB and NAPVI are proud to announce that FamilyConnect has been named a "2008 Outstanding Product" in the iParenting Media Awards. The iParenting Media Award is something parents look for when choosing quality products and resources for their family. It is a real privilege for FamilyConnect to be recognized as a vital resource for parents of visually impaired children. The Awards, overseen by iParenting Media, part of the Disney Internet Group, provide a credible and objective method of determining the best products available on the market for families. I am proud of the efforts of a web team that has worked hard over the past two years to develop a web site with such high quality and standards. We have only launched as of a few months ago and FamilyConnect is already being


Parker Moore, FamilyConnect Youth, Becomes a Star on YouTube!

The talented and confident 11 year old young lady Parker Moore has become a star on YouTube! Parker's video interview that is featured on FamilyConnect has been picked up on YouTube and she has received over 800 hits (and counting) with a five-star rating! Parker has been blind since birth from a rare eye disease called Optic Nerve Hypoplasia. She is now an energetic and imaginative child who enjoys life to the fullest through her acting on stage, singing, and learning at the Arkansas School for the Blind. Parker's advice to parents in raising their children who are blind is "Don't worry about them, just treat them like normal kids." Bravo to her mom,


Welcome to the New FamilyConnect Community

Welcome everyone to the new FamilyConnect community and to my new blog, "A Parent's Voice"! My voice is as a mother of three children and the executive director of the National Association for Parents of Children with Visual Impairments (NAPVI). I am so excited about this awesome way of communicating with parents from all over the world! I would like this blog to be a place where we can have some conversation on what's new, what are some issues you may be facing and successes you want to share about raising your child with a visual impairment. Something like talk radioa place where we can discuss topics of interest in everyday life or the big picture with local, regional, national, and international issues as it relates to the education and medical well being of children


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