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For parents of children with visual impairments

In the News

What We're Reading and Listening to This Week

Now that the school year (and election season) is in full swing again, we're finding lots of great articles and resources online that might educate or inspire.

Although this article from the National Center for Learning Disabilities (NCLD), "Parent Determination Leads to Son's Success with Assistive Technology" focuses on a parent whose child has a learning disability, the core message about "the right combination of tools and resources and an earlier diagnosis" and the recommendation "to identify strategies and technologies that would compensate for his disability" really resonated. What has worked for your child? Have you found the right combination of tools and resources yet?

The NCLD article gives a nice shoutout to our partner Bookshare, and the free access it offers to ebooks. Given that the election season is upon us, why not check out these books, both fiction and nonfiction, that Bookshare recommended via its blog post, "There's an Election Coming!" The reading levels run the gamut from grades 1 to 9.

As the weather gets chillier and the leaves start changing colors, I admit my thoughts turn to apple pie. So I really enjoyed this webinar from Hadley with Christine Ha, the first ever visually impaired contestant, and winner, of the cooking competition show MasterChef. She offers terrific tips for adapting kitchen techniques to accommodate her vision loss, and talks about how...yes, apple pie was a turning point in her experience on MasterChef. If you've been trying to encourage your child's independence in the kitchen, check out this free webinar for some inspiration.

Finally, we're excited about the new webinar series from AFB based on the Learning to Listen/Listening to Learn book by Liz Barclay. The second one is coming up soon, and deals with Listening and Learning for Students with Additional Disabilities. The first webinar is now available in an archived version; it focused on Exploring the Link between Listening and Literacy Skill Development. Students who have visual impairments and additional disabilities need to be engaged in meaningful learning experiences that use touch and hearing to gain information, respond to other people, move within their environment, and occupy their leisure time. These webinars promise to provide a lot of great tips and strategies to parents and teachers alike.

2011 National Bullying Prevention Month in October

Bullying, and how to prevent it, is an issue that has confronted schools and families across the country. It is especially a concern for families of children with disabilities, including those who are blind or visually impaired, who may be perceived as vulnerable and therefore a target for bullying and teasing by their peers. "What Should You Do if Your Blind or Visually Impaired Child Is Bullied" (PDF) offers 10 guideposts for families and schools to address the issue.

To promote awareness of the issue, the PACER Center's National Bullying Prevention Center has designated October as National Bullying Prevention Month. The National Bullying Prevention Center, whose goal is to engage and educate communities nationwide to address bullying through creative, relevant, and interactive resources, has organized resources and events for this month. A listing of these resources and events may be found on its website in recognition of National Bullying Prevention Month.

In addition, the Described and Captioned Media Program (DCMP) has made available several resources, including tip sheets and videos, for families and teachers on its website at www.dcmp.org/bullying.

We are grateful for the organizations that have focused on the topic of bullying and worked on developing helpful resources for families. We'd like to invite families and children to share their experiences with bullying and their own tips and advice on how to face their unique challenges by replying to this blog.

Children From Vision Australia Communicate with the International Space Station

This story from Vision Australia delighted me. Several young clients, 8-12 years old, prepared questions and had the chance to interview a real astronaut, Mike Fossum, about his life and work in space as he circled the earth at 27,000km per hour on board the International Space Station.

What an amazing, interactive science and technology lesson! The complete audio of the interview is available on Vision Australia's site, along with background information about all the hard work involved in making it happen. For example, the students only had nine minutes to ask their questions because they were communicating with the space station via relay, so they had to time it precisely to catch the station while it traveled from horizon to horizon.

As national coordinator Paul Paradigm said to the young "space cadets": "Don't let having a vision impairment stop you from aiming high. You're about to ask questions of an astronaut - keep aiming that high and keep asking questions and who knows where you might end up."

National Chinese Parents' Association Founded

I am pleased to announce that through the support of the Perkins International Program, the very first national meeting for parents of children with visual impairments was held in Beijing, China, in August 2010. I was honored to be invited by Peng Xiaguang, of the Department of Special Education of the China National Institute for Educational Research, to make a presentation about how our parents' association in the United States developed.

In my presentation I shared examples of parents' associations around the world and the tremendous work that has been accomplished by these groups. Parent groups have been significant in developing schools and special programs for blind and deaf-blind children, advocating for national policy and legislation of special education law, creating recreational opportunities for blind children, supporting families of newly diagnosed infants and children, providing parent education and connection to medical and rehabilitative serves, and much, much more.

For the very first time parents of blind, visually impaired, and deaf-blind children from 25 of the 30 provinces in China, rural and urban regions, had the opportunity to meet each other and network. You can imagine the excitement in the room, or may have experienced the feeling yourself when attending a NAPVI national or affiliate conference.

At the Inaugural Meeting of China Committee for Parents of Visually Impaired Children the founding committee of parents was elected and the newly founded organization was established. By becoming a member of NAPVI you will have a new connection with parents of visually impaired children throughout China!

Chinese parents are anxious to network with us and to learn more. Some parents speak English and some do not. They are aware of www.FamilyConnect.org so I encourage you to try to reach out to them through the FamilyConnect message board forums.

During my presentation about the purpose and mission of NAPVI, I explained how we work to support and educate parents so they can ensure that their child can receive the special education and access to information and resources to prepare them for the future higher education and or employment.

When I made this comment I did not expect to hear a flood of responses and questions from the audience—the parents shouted, "you mean my child can have a future?" They were very curious about the various occupations and careers that individuals who are blind have in the United States as in China the only occupation expected for a blind person is to be a masseuse.

I explained that yes, in the United States people who are blind and other disabilities are employed in many types of professional careers although we still struggle in our country with the high unemployment rate of 70% of people who are blind. NAPVI has partnered with the National Industries for the Blind (NIB) to address this issue by organizing and hosting parent forums to discuss how to prepare their children for the future and employment options. This year we've held parent forums in Texas with the Texas Association for Parents of Children with Visual Impairments (TAPVI) and the NYC-NAPVI affiliate and ACB New York.

NIB and NAPVI are currently making plans for the next parents' forum that will be held in Seattle, Washington in March in conjunction with the Josephine Taylor Conference of the American Foundation for the Blind (AFB).

NAPVI's founding President Lee Robinson said, "Parents must regard themselves as the long lasting resource and the only consistent persons who continually have the child's interest at heart throughout their child's lifetime. NAPVI is a means to help them fulfill that function." Although there will be many special people that will touch your family's life, your role is the most important in your child's life. From nurturing your child from birth, to helping to see that your child receives the best education and access to information and resources, to ensuring your child learns the skills to prepare her for the future.

Excerpted from AWARENESS, NAPVI's award-winning quarterly newsletter.

General Assembly of the United Nations Met in NYC Last Week

Leaders from around the world met for the General Assembly of the United Nations (UN) in NYC to discuss and to make plans to solve the world's problems and issues. For you to know, the UN has established a document called the Millenium Development Goals (MDGs) which identifies the main issues and goals that impact humanity worldwide to be addressed:

Goal 1: Iradicate extreme poverty and hunger

Goal 2: Achieve universal primary education

Goal 3: Promote gender equality and empower women

Goal 4: Reduce Child Mortality

Goal 5: Improve maternal health

Goal 6: Combat HIV/MDG goalsAIDS, malaria & other diseases

Goal 7: Ensure environmental sustainability

Goal 8: Develop a global partnership for development

What does this mean to us—families of children with visual impairemnts and disabilities from around the world? What is our role in solving the world's problems? Actually, families and communities play a key role. Governments and large non-government organizations cannot achieve the UN Millennium Development Goals without us.

I attended a side meeting to the General Assembly "Five Years for Children; Partnering with Communities to Achieve MDGs with Equity" where international leaders discussed what we can do in the next five years to combat the world's main issues. I firmly believe that if parents of children with disabilities have emotional support and connection to resources and education, they can ensure and advocate that their children will receive special medical and educational services they need for their foundation for the future.

My role as the NYC Representative for the World Blind Union (WBU) and the National Association for Parents of Children with Visual Impairments (NAPVI), for the Non-Government Organizations (NGOs) to UNICEF is to be your voice and advocate to represent parents and children with visual impairments and disabilities. WBU and NAPVI are looking at ways we can contribute to supporting families worldwide.

NAPVI has been involved for 20 years in helping to support the development of parent and family support organizations throughout the world in nearly 20 countries, supporting members in 80 countries. We have a strong community base to make an impact.

You can expect more mobilization and communication through WBU, NAPVI and www.FamilyConnect.org with international communications through our websites to increase our networking and connections between parents' associations throughout the world.

Please check out this link of Stevie Wonder speaking out at the UN's 184th World International Intellectual Property Organization's meeting last week, advocating for copyright laws to consider allowance of translation of publications into readable formats for people with disabilities.

Being a part of the FamilyConnect community connects you with families throughout the world.

Happy 20th Anniversary of the Americans with Disabilities Act!

Today, the Americans with Disabilities Act (ADA) is officially 20 years old! I remember attending the ceremony at the White House where President George H.W. Bush signed the law on July 26, 1990 and I'm looking forward to celebrating with President Obama and the disability community today.

Of course, American children with vision loss have grown up in a society that, while not perfect, hopefully more effectively includes people with disabilities. ADA says no to discrimination against people with disabilities in employment, transportation, government services and access to goods and services. Hopefully, ADA says yes to enabling those of us with disabilities to pursue and develop our interests.

There is still a lot of work going on to extend ADA's prohibition against discrimination into other areas of life. For example, today, the Department of Justice (DOJ) announced that it is officially proposing to require that commercial web sites be made accessible for people with disabilities. In addition, DOJ also announced that it is exploring requiring movie theaters to include video description and captioning for movies.

Meanwhile, Congress is celebrating ADA in yet another way. Today, the United States House of Representatives is voting on a new law, H.R. 3101, the 21st Century Communications And Video Accessibility Act of 2010. This legislation, which still must pass the Senate and be signed by the President before it becomes law, would improve access to communications technologies that connect to the Internet and make television watching much more fun and informative for those of us with vision loss. Specifically, H.R. 3101 will:

• Restore and expand requirements for video description of television programs, in addition to requiring cable companies to make their program guides and selection menus accessible to people with vision loss.
• Mandate mobile phone companies to make web browsers, text messaging, and e-mail on smart phones fully accessible.
• Ensure people with vision loss have access to emergency broadcast information.
• Provide $10 million in funding each year for assistive technology for deaf-blind individuals.

At the time it was written, no one could have predicted the new technologies that would shape our daily lives and work routines. The ADA is best known for improving physical access to buildings, but now it is being used to improve our lives in many other ways, including in access to technology.

This is shaping up to be quite a 20th birthday. And, you can play a part in the celebrations and plans for the future.

You can watch the White House ADA celebration, which begins at 5:30 Eastern time, via the web at www.whitehouse.gov/live.

Please log in and share in the celebration.

To learn more about the proposals from the Department of Justice, and to register your own comment in support of access to the web and to video description, use these links:

edocket.access.gpo.gov/2010/2010-18337.htm
edocket.access.gpo.gov/2010/2010-18334.htm

Comments are welcome from the public and are due by January 24, 2011.

You can learn more about H.R. 3101 on the web site of the Coalition of Organizations for Accessible Technology (COAT), www.coataccess.org. And sign up for alerts from FamilyConnect, so that you will learn about opportunities to help advocate for the bill. Your support will be especially needed to get it approved by the United States Senate!

Join FamilyConnect in Celebrating May as Healthy Vision Month!

The National Eye Health Education Program (NEHEP) of the National Eye Institute (NEI) has created free resources and tools in English and in Spanish that you can download or link to, to share with other parents and your community. Their site is loaded with information about resources, tool kits, literature, and information on eye diseases, fact sheets, ideas for community activities, and games for kids all to promote eye health education. This is great awareness for your child with a visual impairment, their brothers and sisters, for yourselves as parents, and grandparents. Hey, just thought you should know—the best part is that it is really good resources for free—especially in the tight economy today. Happy Spring! Susan

Hands-On Learning Thanks to New Technology

I recently came across this interesting article about a high school in Alberta, Canada. They report that they are very pleased with their investment in "lab equipment designed to allow students with low vision, or no vision, to become active participants in chemistry, physics and biology labs."

It is great to see creative technological solutions to access problems in education. You can really sense the pride from the student who said, "Now, we could do it all ourselves."

Have any of you seen this technology in action? How up-to-date are the facilities in your child's school? Have you successfully lobbied for any improvements?

Parents of Blind Children Were Also Affected by the Philippine Typhoons

Many of you know Judith Lesner, our community moderator on the FamilyConnect message boards. She is a mother and has been an advocate for many years for families of children with visual impairments. She also has been a great support to the National Association for Parents of Children with Visual Impairments (NAPVI) affiliate in the Philippines. Please read Judith's blog post, where she has given us more important details about how the recent typhoons in the Philippines have affected our friends.

Those of you who attended the last FamilyConnect conference in Costa Mesa know that NAPVI has an affiliate in the Philippines. It is called Parents Advocating for Visually Impaired Children (PAVIC). It is a thriving organization based in Quezon City (near Manila) with groups in various parts of the country. They are the national parent training and advocacy group in the Philippines. They receive support from Resources for the Blind (RBI) and Hilton-Perkins as well as other corporate donations. However, their resources are strained as government support for children who are visually impaired is limited by the national economy.

Just over a year ago, Susan LaVenture and I attended their national conference in Quezon City. I had lived in the Philippines in the 60s and had returned in 1996 for a visit. I couldn't believe the changes in services for children who are visually impaired. This group had organized and educated their members and had made a great change in what has been made available to these children. We met with some of them again in Costa Mesa and they were thrilled to have the opportunity to come to the U.S. and see what we are doing here.

I have stayed in touch with the group and contacted them after the major typhoon hit the Metro-Manila area in October. The devastation of homes in the area was enormous. PAVIC was holding a conference at the time and they were all trapped in the hotel where it was being held. They soon found out that seventeen families in the group lost their homes and were totally wiped out. PAVIC has been very busy collecting donations and purchasing such basics as food, water and clothing for these families to help with their survival. Individuals and the California School for the Blind Student Council have made donations of money to help these families but more help is needed. Also, PAVIC had previously arranged with Philippine Airlines Foundation to ship toys and educational material for blind children for free. Prior to the disaster it had shipped 8 boxes of new and used toys and educational material for PAVIC to distribute. They are particularly interested in acquiring braillers, braille books, slate and styluses, books on tape and tape recorders for students with visual impairment. If you are interested in helping in any way, please contact me at mavenno1@aol.com.

Join Us This May for Healthy Vision Month!

Did you know each year in May the National Eye Health Education Program (NEHEP) of the National Eye Institute (NEI) spearheads Healthy Vision Month along with associations that provide vision rehabilitation and eye care services? Both NEHEP and NEI are resources you should know about—they are the national federally funded arms in the United States, NEI, focusing on eye research and NEHEP on public eye health education.

The Healthy Vision web site offers free resources and materials for adults and children in English and in Spanish; information on examinations and prevention; literature citations and abstracts; and organizations to contact for additional information.

It's important to encourage eye health for the whole family, whether a family member is visually impaired or not. There is a myth I've heard about that some people think if you are visually impaired or blind it's not necessary to go for regular eye exams. This is untrue: it's extremely important to promote eye health for our visually impaired kids to keep their eyes healthy. Having regular eye care could prevent other secondary conditions that can occur if left untreated from the child's primary eye condition. Promoting eye health for the whole family, including members who are not visually impaired, is essential for prevention as well; in many cases eye diseases have been scientifically linked to genetics and can be hereditary in families.

There has been great progress in eye research and in treatment methods—with regular eye exams and care under an eye care professional, early detection and treatment can sometimes save sight!

Progress Being Made in Research with Stem Cell Therapy and Corneas

Given that there have been a lot of questions and discussion about stem cell research on the FamilyConnect message boards, we thought you may be interested in this new breakthrough in stem cell research that was reported in ScienceDaily today: "Stem cells collected from human corneas restore transparency and don't trigger a rejection response when injected into the eyes that are scarred and hazy, according to experiments conducted in mice by researchers at the University of Pittsburgh School of Medicine." In reading the article it sounds like this is a real breakthrough that could lead to promising treatment for scarring and cloudy corneas.

As a member of the FamilyConnect community, please feel free to discuss your ideas and sharing new information and resources with other parents; this is your forum.

Happy Spring and have a good weekend!

Susan

LA Times Features Blind High School Runner

High school senior Alyssa Rossi's story was recently featured in the LA Times. Alyssa, blind since birth, is able to fully compete on her high school track team with teamwork by her track mates. Teammates take turns being a sighted guide by tying a belt connected to the waists. This is just one example of a technique for blind athletes to participate in track. More techniques can be found in an article on AFB's web site, Tips for Runners with Visual Impairments, such as guidence for giving verbal direction, instructions for sighted guides, and running with a tether.

It's important for blind or visually impaired youth and young adults to have the option to compete in athletics and to be recreationally active rather than be discouraged. Oftentimes it takes thinking creatively of how to make accommodations for them to participate. You can also find other ideas in these audio interviews about ways parents can encourage their child's recreational skills.

Let's get some dialogue going on this topic—please share ways your child has been able to participate in recreational activities with your family and friends and competing in sports that the public typically does not foresee.

American Idol Contestant Scott MacIntyre Heads to Hollywood

Last night after work, I came home, cooked dinner, and watched TV with my son and his girlfriend. One of the benefits of having kids or young adults around is that they keep us young and up to date with the latest music, TV shows, and movies!

My son selected to watch American Idol, so of course I joined them. The show is quite fun to watch, and an extra bonus was that one of the contestants for the show was Scott MacIntyre, a young man who is a singer/songwriter who happens to be visually impaired. All four judges voted "yes" that Scott would move on to the next audition round, which will be held in Hollywood.

His story made top news on the Internet and newspapers—the public still seems to take it as a surprise when someone who is blind can be talented or have some great achievement, like they are some sort of superhero or heroine. Although I'm glad for Scott or any other blind person who makes the news or gains fame; it is a good thing to educate the public that blind people can and do accomplish things.

As a parent of a visually impaired child, that's another hat that we inherit—public awareness and education about people who are blind or visually impaired becomes part of our everyday life. Whether we're at the grocery store or going to the movies, oftentimes we need to answer bystanders' questions about blindness. I would love to hear some stories from you—how have you handled the public?