Browse By Topic: Personal Reflections

To Use Person-First Language or Intentionally Not Use Person-First Language, That Is the Question

When speaking or writing about a person who is blind or visually impaired, it’s important to use person-first language: ‘the boy who is blind’ is preferred over ‘the blind boy’, I distinctly remember learning in my coursework to prepare to become a teacher of students with visual impairments. Here I am, a decade-and-a-half later, writing for FamilyConnect and making the daily decision, To use person-first-language or intentionally not use it? As you, family members and teachers, talk and write, I know you also wrestle with this question. I


The Green Button: A Lesson in Hospital Advocacy Learned from My Sister Who Is Blind, Mayra's Story

Leer este artculo en espaol In one week, Mayra was admitted to the intensive care unit twice. During her first stay, she made use of an intravenous line and a portable heart monitor, a visible and audible reminder of the seriousness of her medical diagnosis. The second time she was sent to ICU two additional pieces of medical equipment were used: a feeding tube and a pain pump. The pain pump would dispense medication continuously to keep the pain under control. If the pain increased, Mayra could push the button that had been attached to the pump for additional medication to be dispensed. The instructions were both easy to understand and easy to follow. The plan initially worked okay; the pain was controlled for a little over 24 hours.


Yes, Blind Children, You May Touch Your Elves on the Shelf: A Letter from Santa Claus

Editor's note: FamilyConnect is hand-delivering a note from Santa, who gives permission to children who are blind or visually impaired to touch their Elf on the Shelf. We hope you utilize this post from Holly Bonner, visually impaired mother of two girls, to make the holidays even more meaningful for your child with a visual impairment. Yes, Blind Children, You May Touch Your Elves on the Shelf By Holly Bonner Elf on the Shelf has quickly become a popular holiday tradition


Why Your Blind or Visually Impaired Child Needs to Study Abroad

Editor’s Note: Today's blog post is by Justin Harford, a project coordinator with the National Clearinghouse on Disability and Exchange, a project sponsored by the Department of State and administered by Mobility International USA for the purpose of increasing participation of students with disabilities in mainstream international exchange. Having studied and traveled in Latin America using a white cane, a slate and stylus, and a smartphone, Justin knows firsthand about the growth and independence that can come from studying abroad. Why Your Blind or Visually Impaired Child Needs to Study Abroad <img src="http://www.afb.org/image.ashx?ImageID=8710" alt="Earth globe on a background of red rays, blast type fireworks"


First-Generation College Graduate Who Is Blind Encourages Parents of Visually Impaired Children

Leer este artculo en espaol Hello, my name is Ana. I have been blind since birth. The name of the genetic condition that I have is Leber Congenital Amaurosis (LCA). I have the privilege of being the first blind person in my family. I also have the privilege and the honor of being the first person in my family to obtain two college degrees. After reviewing the mission statement of American Foundation for the Blind, I discovered that their goals and mine are similar. I too want to work to leave a world with fewer limits for the generation of blind young men and women who will


In the Hands of the Beholder: Artist Who Is Blind and Deaf Shares Why Not Doing Art Because You're Blind Is No Longer an Excuse

Decades before Carol Saylor started to notice that the colors on her canvas were not as bright, and years before the sounds in the classroom and studio were reduced to a low hum, she chose a lifelong path steeped in creation and expression through the fine arts. She listened to her internal voice; she committed the spectrum of colors etched into her mind to memory. When the gradual deterioration of both her sight and her hearing started, Carol already had what she needed to continue on. She had years of human experience and observation, she had her imagination, and above all else, she had a vision. Carol walked me around her home in Abington describing watercolor landscape paintings of marshlands, flower arrangements, and wilderness that hung on the walls. One of these


TVI Mom: Raising a Child Who Is Visually Impaired As a Teacher of Students with Visual Impairments

I had been a teacher of students with visual impairments and orientation and mobility specialist for a few years when my husband and I welcomed our son, Alex into our lives. Things were turned upside down with the typical sleep deprivation and new parenthood stress. At six weeks, I noticed something as I stared into his brown eyes that were moving rapidly side to side,


Making the Most of "Meet the Teacher" When Your Child Is Visually Impaired

As we near the beginning of a new school year, school districts prepare teachers with their class roster and include copies of Individualized Education Programs (IEPs) and 504 plans. Teachers of students with visual impairments are often busy delivering braille books, low vision devices, and all of the necessary equipment in place for the student. Meanwhile, parents and children anxiously await


Inclusion in Life: Ted Talk Speaker Kristin Smedley Shares About Her Children with Visual Impairments

In the opening of her Ted Talk this past May, Kristin Smedley shared a very honest story about one of many very hard days as the mother of a blind toddler. Michael was three years old, bouncy and delightful. She was paralyzed daily by the fear, anger, and grief that his CRB1 diagnosis caused her. One day, in particular, she couldn’t make it out of bed. Why was this happening? Why would this happen to her child? In that moment, she could hear her son make his way down the hall to her room. Mommy, are you in here? Yeah, buddy, I’m right here in front of you on the bed. Mom, I just had to come down here and tell you, isn’t this just the best day ever? The sun is shining, and


Adult with a Visual Impairment Describes Learning to Use the White Cane While Using a Motorized Wheelchair As a Teen

Editor’s Note: Ms. Kim Shepherd shares her experience learning Orientation and Mobility while using her motorized wheelchair in hopes that children and teens with multiple disabilities pursue O&M training. Thank you, Kim! To the FamilyConnect family, I received Orientation and Mobility training in 1977, at age 15, while attending Chico Junior High School in Chico, California, thanks to the brilliance and compassion of Mr. Jerry Early,


Our [Very Positive] Experience with Evaluations at Perkins School for the Blind

Planning the Evaluation Last I wrote, we had obtained funding for our son, Vincent, to go to Perkins School for the Blind in Massachusetts for an evaluation. It takes a long time to get a date; I got all my paperwork and assessments together to send them in September. It took seven months to get a date in March. To be fair, they gave us a date in February. However, we had tons of snow, and they graciously extended the date to the end of March. It continued to snow here in Maine through April. The trip to Perkins School took a lot of work on our part to put together. We have three children and two foster children. We were able to put one of our foster children


In Italy, “I” Stands for Inclusion, Part 1: Gabriele Colantonio Recounts Attending School As a Child with a Visual Impairment

Editor’s Note: In honor of Global Accessibility Awareness Day (Thursday, May 18), we are sharing two stories about the education of children who are blind or visually impaired in Italy. Today’s story is from Gabriele Colantonio about his experience with different school systems across several regions of Italy. Tune in tomorrow for part two, “A Closer Look at Italy’s Approach to Educating Blind and Visually Impaired Students of Today.” Gabriele Colantonio Recounts Attending School As a Child with a Visual Impairment Since 1977, the Italian Ministry


Teacher Appreciation Day and Your Child’s Teachers of Students with Visual Impairments and Orientation and Mobility Specialist

National Teacher Appreciation Day 2017 is Tuesday, May 9th; Teacher Appreciation Week is initiated by schools sometime between early and mid-May. While you may have a few ideas generated for your child’s classroom teacher, I wonder if you’ve considered how to celebrate your child’s Teacher of Students with Visual Impairments (TVI) and orientation and


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


Seeing Our Child Who Is Blind

Lately, I’ve been watching Eddie with intense interest. Paying attention to the many ways he communicates, verbal and non-verbal. Admiring how he has begun problem-solving to get what he wants. Noticing how his whole body reacts when he’s upset, frustrated, or lacking words. I think to myself, “I see you.” We recently took our annual trip across the state to see some of Eddie’s medical specialists. These are doctors he’s had relationships with for most of his life. These people “see” him too. They know how to communicate with him and how to calm his anxiety. When performing any kind of


A Thankful Mom: Nancy's Story of Raising Her Son Who Is Visually Impaired

I recently had coffee with the mom of one of my former students (Jake). You may remember reading about Jake in July when AFB celebrated his graduation from high school and acceptance into college. I know firsthand Jake's success was in large part due to his unique character as a person, but his attributes of determination and optimism are traits his parents modeled for and instilled in him. Having worked with Jake's parents for many years, I thought I knew what their life was like as parents of a child who is visually impaired.


Understanding CHARGE Syndrome: Raising My Child Who Is Deaf-Blind

Editor's Note: Last week, Amanda Bowdoin shared the story of the birth of her son, JD, who is deaf-blind with CHARGE Syndrome. Today in part two, Amanda shares the joy and fear of raising her child. Understanding CHARGE Syndrome: Raising My Son, JD JD spent most of his early years surrounded by nurses, therapists, and doctors. I decided when the twins were 3 years old to go into the program at Stephen F. Austin State University for Visual Impairment. At this time, JD was starting to wear glasses. Because he


Understanding CHARGE Syndrome: The Birth of My Son Who Is Deaf-Blind

Editor's Note: Over the past several weeks, Amanda Bowdoin has shared stories about raising her son, JD, who is deaf-blind with CHARGE Syndrome. She showed us how anything is possible for JD and how he is bound by no limits. Today, she shares a special story about the birth of her twins, JD and Olivia. This is part one of a two-part series. Understanding CHARGE Syndrome


Defining Our Children Who Are Blind or Visually Impaired

As I’ve shared before, we were given a grim perspective of Eddie’s future when he received the diagnosis of optic nerve hypoplasia. We were abruptly told he was blind, severely handicapped, and then being asked, Do you know what that means? As a young mother in a small doctor’s office, the answer was obviously No. I didn’t know what that meant for him as a baby, or what it would mean for his future. When he entered preschool, while trying to navigate the special education system, I struggled with what his blindness meant. Did it mean he would be in school with the neighborhood kids, or would he be somewhere else? Did it mean that we should just see


Using the Expanded Core Curriculum in the School Setting

Editor's note: Today's blog post is from Amanda Bowdoin, M.Ed., a certified teacher of the visually impaired in Texas. She earned her master's degree in visual impairment from Stephen F. Austin State University. Amanda is also a mother of twins, JD and Oliva, who are 11 years old. Her son JD has CHARGE Syndrome and is deaf-blind. Using the Expanded Core Curriculum As a Safety Patrol By Amanda Bowdoin For my son, JD Bowdoin, a fifth grade young boy, it doesn’t matter what level of education he has or doesn’t have. It doesn’t matter what his mode of communication may be. All that matters to JD is


Corporal Punishment in U.S. Schools: Not Nearly As Uncommon As One Might Think

We are excited to share this blog that brings to us one of the hot topics generated at the Lighthouse Guild Telephone Support group. These groups are a great way to meet other parents by phone and is a free service. To get more information or to join a group, please contact Susan LaVenture at LaVentureS@lighthouseguild.org. Corporal Punishment in Schools By Lilly Jackanin I recently received a call from a mom moving from the state of California to the southern state of Alabama. She had done a tremendous amount of research in many areas, including the Alabama schools, before embarking on this decision. When she arrived,


Ladies Who Lunch: Lessons Learned During Mommy-Daughter Time

Since having my second daughter, I have come to realize just how difficult it can be for a blind mother of two toddlers to get around. Cumbersome car seats, a double wide stroller, and a back breaking diaper bag are just some of the baby essentials necessary for even the shortest spring outing. Although I know this awkward travel period is merely a bump in the road on my journey through blind parenting, I don’t want to miss a single opportunity to spend time with my daughters. My eldest is three years old and has recently been requesting some extra cuddles, reading time, and overall mommy attention. I told my husband I wanted to take her out for


Super Dad

Dad - what the "S" on your chest really means. Dads are often the silent partners - the ones who stand in the shadows. They're far from being the bad guys, though. In fact, they are the protectors of the family - the good guys. When danger strikes, they have the superhuman speed of Superman to react faster than a speeding bullet to fight off whatever threat has obstructed their paths. A special needs dad might find this role to be different than what was first expected or imagined. Normally, from the time a child is born, a father dreams of tossing around a football with his son or taking


Daddy's Got Your Back

The best way to start this blog about Mary Rose and her dad, Dave, is by starting it on a positive note, the way Dave starts every morning with our precious 10-year-old daughter... Dave, "Mary Rose who's got your back?!" Mary Rose, "You got my back, Daddy!" Dave, "Who's got my back?!" Mary Rose, "I got your back, Daddy!" Dave, "Who's got our backs?!" Dave and Mary Rose, "We got our backs!" Dave and Mary Rose, "GO BUSHLANDS! Hooyah!!" I can't even tell you how it warms my heart to hear this uplifting cheer to greet our day! I have often thought about how blessed


What Is a Father?

I’ve been thinking all week about Father’s Day. Couple of reasons: What do I get my husband? How can I show him how much we all care and love him? But more importantly, how can I share about the impact he has had on so many children? My husband is a retired social worker, minister, and a musician. We refer to him as “the Preacher Teacher Musician," also part social worker. He’s always lived his life in the public. He still reaches out to folks, ministering through music. He is and has been an adoptive/foster parent for 40 years. He’s still my partner in providing foster care for children who are medically fragile. Is he perfect? Not on


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


Graduated and College Bound!

I recently had the honor of recognizing one of my former Kindergarten students, Michael "Jake" Beausir for a scholarship award at his high school graduation awards ceremony. When I announced his name to the audience, the crowd rose to their feet and roared with applauses, whistles and shouts of "whoop whoop"! As Jake accepted his award, I was humbled by the lingering well-deserved congratulations from his high school family, his dad, mom and big sister. Jake's peers were in awe of him as they know his story of perseverance and value the attributes of his intrinsic character which include fortitude, courage and leadership. Simply put, his graduating class members


Wow

What a spring this has been, especially after the winter that wasn’t. Spring to me is always like unwrapping a new package. I just never know what is going to be in it. I feel the same way about learning. Each year is like unwrapping a package. Vinnie is always surprising me. We do the same old things, adding on new things, which build on what we have already learned. We try some new things too. I always find joy in those new accomplishments. We have some changes coming. I never like those. Most of us prefer what we know, that which is comfortable. I like a predictable routine. Vinnie turns 10. Adolescence is coming. He is growing


High Expectations for Your Graduate with Vision Loss (From Pre-K to High School)

For as long as I’ve had the pleasure of blogging for AFB CareerConnect, followed by AFB FamilyConnect, I’ve never said it. I’ve reserved its use. Until now. If you only remember one thing from any blog I’ve ever written, remember this: Your son or daughter needs (read: thrives on) your high expectations. We’ve heard it before, but has it changed the way we parent our children? And how does it impact the way we regard our graduates? This year I have a graduate from Pre-K and a graduate from Kinder; maybe you have a graduate from elementary,


What Your Future Adult Son or Daughter Will Say to You on Mother's Day

Lately I've been talking to my mom every few days. I just love when she calls to check in on me (okay, check in on her granddaughters!). It's soothing to hear her voice; it's comforting to know she cares; and it's helpful to get her advice on…everything! I love my mom. Yet I have a head full of memories reminding me I didn't fully comprehend or express my love for her as a child. I didn’t adequately appreciate the years and years of her drying my tears, mending me back to health, preparing meal after meal after meal, watching my (lack of) softball skills, “managing” my attitude, and scrubbing the floors. I


Beeping Egg Hunts: Ten Years Later

Editorial note: Check out David's tips on hosting a beeping Easter Egg event for children who are blind or visually impaired, from a few years ago. Rachel, age 7 I can’t believe it has been ten years since we held our first beeping Easter egg hunt for my daughter Rachel. I combined a beeping egg hunt with my church’s traditional Easter egg hunt that first year. My daughter was about a year and a half old and I wanted to find a way for her to enjoy


The Love Your Child Who Is Blind or Visually Impaired Needs

This is far from a lecture, but an invitation to a discussion. I want to pose a question and I'd appreciate your input. I’ll give you my thoughts; know that I'm coming from the angles of both a teacher of students with visual impairments and a parent. I need your expertise as a parent of a child with a visual impairment (an expertise I do not have.) What expressions of love does your child (who is visually impaired) need from you? As for my input: Loving a child with a visual impairment is no different than loving a child without a visual impairment. After all, the most important components of


Ten Invaluable Resources for Parents of Babies and Toddlers Who Are Blind

Those of you who have young children recently diagnosed with blindness or a visual impairment, the intensity of emotions you are feeling is not overlooked. We recognize you’re in a deeply painful waiting room. You don’t know how to envision your child’s future; you wonder what services your child will need and how you will get them; you wait to one day overcome grief and accept all that is. You look to your right and left, and it feels as if nobody else is waiting with you. We at FamilyConnect do not want you to wait alone. We’re here. We’re here


A Survival Guide for the Holidays When You Have a Child Who Prefers Calm

A math equation we parents of sensitive children know well: A sensitive child + A new environment + A Loud crowd of voices + A Late-night party + A possible itchy Christmas dress or slacks = A recipe for many (not at all merry) meltdowns. I saw it today; bless his heart. The boy in the back of my child’s school “frenzy” (it’s an assembly, but “frenzy” is certainly more accurate) preferred calm, while the majority of children sung holiday songs and screamed with delight. He held his hands over his ears and rocked, wanting a little more peace and a little less party. If you have a


Inspired by the Holidays: Volunteering with Your Older Child Who Is Blind or Visually Impaired

Can I tell you my favorite holiday memory from childhood? I was 8 or 10; my parents, siblings, and I bundled up and squeezed into the minivan on our way to “Meals on Wheels”. We collected about 4 single-serving hot meals; slices of roasted turkey, runny mashed potatoes, green beans, and pecan pie enclosed in Styrofoam. We were given directions to 4 homes and off we went. I remember meeting adults my grandparents age who lived alone and who seemed eager to chat with our family. I instantly liked them. We gave each person a meal, accepted friendly hugs, and drove home changed. That began a


Inspired by the Holidays: A Letter from Santa and Literacy Galore for Your Child Who Is Blind or Visually Impaired

Thank you, holiday season, for generating major motivation for our beautiful little people to read and write. When my children come home from school this afternoon I will ask them to write a Christmas wish list. I’ll grin as I watch their uncharacteristic enthusiasm for literacy. My oldest, the perfectionist, will ask for help with spelling. My youngest, the ultra-spirited one, will be content with guessing. I’ll be happy they’re practicing. Let’s think of further ideas for incorporating literacy training this frosty month: This is too cool. If you sign up online


Including Your Child Who Is Blind or Visually Impaired in Hanukkah Traditions

Yesterday I had the pleasure of speaking with a family friend, a rabbi. I asked him to explain the holiday of Hanukkah along with its traditions and celebrations. He explained that the holiday of Hanukkah commemorates a time (2,180 years ago) when G-d empowered the ancient Israelites to defeat the powerful Syrian-Greek army. The army, under the leadership of Antiochus Epiphanes, sought to conquer Israel and cruelly deny the Jews their right to worship G-d or practice their faith. Although vastly outnumbered and short of weapons, the brave Israelites miraculously defeated the Syrian-Greek army over a three-year


Experience Gifts for Children Who Are Blind or Visually Impaired Celebrating Christmas, Hanukkah, or Kwanzaa

“This Christmas,” my parents told me when I was twelve “we are going on a family trip instead of buying presents. Here’s why: Do you remember what we bought you last year? No? Well, you never forget an experience.” They were right. I never forgot that trip; we drove from our home in Raleigh to a cabin-inspired hotel in the North Carolina mountains for the weekend. It was my first time playing in the snow and it was marvelous. And so began a new tradition where we had a small gift to open on Christmas, but the highlight was the forging of a memory. To my parents, thank you for that


Inspired by the Holidays: Take an "Autumn Walk" and Encourage Your Child Who Is Blind or Visually Impaired to Discover the Sights, the Smells, and the Feel of Fall

I will never forget his question. My transition students and I were on a nature trail walk and it was a particularly rocky section. One teen who was totally blind opted for sighted guide, so I offered him my arm. We all strolled on and chatted; all except this one, typically talkative, teen. "What's on your mind?" I asked. "Ms. Shannon, how many snakes do you see?" he asked with a quivering voice. "What?! None! Why do you ask?" "I know snakes live in the woods. I thought you must see them all over the place." I assured him that snakes prefer to flee from the noise and if I saw one,


Inspired by the Holidays: Encouraging Your Child Who Is Blind or Visually Impaired to Get Curious About Careers

I guess you could say I’m as inspired by the holidays as I am by Emily Coleman’s blog series: "A Holiday Approach to the Expanded Core Curriculum". Take, for instance, Emily’s advice to have your child ask family members about their careers in the blog post, “Career Education for the Holidays”. This is where I want to focus. You probably have a


Inspired by the Holidays: Enlisting the Help of Your Child Who Is Blind or Visually Impaired with Your Thanksgiving Meal Preparation

Last year Emily Coleman blogged about living skills instruction over the holidays. I know Thanksgiving week can be an intense week of traveling or hosting relatives, and you may feel held captive by the kitchen, but. But what if this week can also be a time for your child who is blind or visually impaired to improve her cooking skills and shine? What if


Odds and Ends and Homeschool in Braille

The joy of home school is setting your own school time. You also have the flexibility to change the time based on needs and progress. Three to three-and-a-half hours of day in home school translates into a good 5 to 6 hours of public school with arrive times, bells, class change, recess, lunch, and ready to go. That doesn’t even include bus time. The bus picks up the senior next door at 6:45 AM and returns at approximately 3:45. That is one heck of a long day. We use our time doing things like listening to a book and playing outside, getting “GASP” exercise. We also have more time to work on ADLS (activities of daily living skills).


Inspired by the Holidays: Ideas, Tips, and Resources for Families of Children Who Are Blind or Visually Impaired

"Silver bells, silver bells, soon it will be…" I know, right?! I'm equally as staggered. Wasn't it just Thanksgiving, 2014? Didn't we just take down the holiday lights? I guess not; my, how the day-to-day intensity of parenting leaves us wondering where a year went. And so we look ahead to the holiday season. One we can intentionally fill with child-wonder, quality time, memorable traditions, and lastly, significant learning opportunities. So here's the plan, my plan at least: You focus on enjoying your children; notice and appreciate the simple, beautiful


Life Prep or Career Planning for Teens

Parents often ask me what they can do to prepare their children with visual impairments for life and employment. I always encourage them to enroll their children in career education and job preparation courses. As we approach the end of October, which is National Disability Employment Awareness Month, I am pleased to share with visitors to the FamilyConnect site great news about a new program that Perkins School for the Blind will launch in January 2016: the Perkins Pre-Employment Program (PEP). The PEP will be offered at Perkins’ Watertown, Massachusetts, campus every other Saturday through May. And, yes, there are snow days built in to the schedule – just in case!


White Cane Day: Post Your Picture!

Editor's Note: We welcome this post and project from Wonderbaby which is one of our favorite sites. Please participate as we would all love to see pictures of your darling child with their cane! We all have favorite holidays. I've always loved Easter with its spring crafts and Easter egg hunts, but of course nothing can really compare to Christmas! My son, Ivan, on the other hand, has the most fun on Halloween when he gets to dress up and visit all our neighbors to ask for candy. But ever since Ivan was diagnosed blind over 10 years ago, there's a new holiday that warms my


From Intolerable to Indispensable: Learning to Love my White Cane

I have not always loved my white cane. I’m twenty eight now and don’t like to be out of the house without my cane, even if I’m not using it. It gives me a sense of security and independence that I really don’t like to be without. But it was not always that way. Not at all. When I was a little girl, I hated my cane. It was “useless!” “Stupid!” “So annoying!” It was, in my young eyes, the symbol of everything that made me different. My teachers tried to get me to like it. They used every tactic they could think of. They tried forcing me to use it. They tried introducing me to other people who were cane users. They tried suggesting I


Oodles of Resources for Equipping Your Teenager Who Is Blind or Visually Impaired for Successful Employment

Because sometimes you just want to say words like “oodles” to lighten the mood. And the rest of the time you aim to finish laundry, serve a tasty- enough meal, and supply your teenager with information and resources to succeed as a future employee who is blind or visually impaired. While FamilyConnect can’t help you wash and fold, and can’t whip up and serve foodstuff, we will gladly hand you a list of 5 employment resources for you to work through alongside your adolescent. Open the links below and explore with your teen. It will be time and energy well spent; I promise. Encourage your teenager to investigate AFB CareerConnect's


Free Teen Tele-Support Group for High School Seniors

Editor's note: Lighthouse Guild and NAPVI have a number of teleconference programs and we will be posting information for them on this blog. I am excited to announce that the Lighthouse Guild will be offering a free, teleconference support group for blind and visually impaired, college bound high school seniors starting this Fall for the school year. This is the fourth year that we are offering this group. Participants call in for a 60- to 90-minute phone group each week, using a toll-free number. It is a great way to meet other students also dealing with the challenges, trials, and tribulations of preparing to leave home for college, as a visually


Erik Weheinmayer Employment Interview

You might know it is National Disability Employment Awareness Month, and I was offered the opportunity to share some information with you. I manage the American Foundation for the Blind's CareerConnect program. AFB CareerConnect is a career exploration, job seeking skills, navigating the employment process, and e-mentoring web program. You might guess that I am quite passionate about employment and the transition from school to work. In my work with AFB CareerConnect, I have been able to connect with fabulous and inspiring individuals who are blind or visually impaired. One of the coolest and one of my personal favorites has been Erik Weihenmayer, world-renowned


Parents, I Present You with “Your Roles” in Readying Your Child who is Blind or Visually Impaired for Future Employment

You know preparation for adult roles begins early. For this reason AFB FamilyConnect provides a “Transition to Independence” section within each age-specific category: Babies and Toddlers, Preschoolers, Grade


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


Why Being a Blind Mother Is Awesome

Editor's Note: We welcome Courtney Tabor-Abbott as a new contributor to FamilyConnect. Courtney works for the Perkins School for the Blind, is a parent of two sighted children, and is willing to share her perspective and tricks of the trade as a mother who is blind. I am a parent of two young children. James is 2 ½; Samuel is 7 months. Life with a toddler and an infant is crazy. My house can go from clean to total disarray in a matter of minutes. Between baby spit up and toddler potty training and infant diaper changes, there are more bodily fluids than any one human being should ever have to deal with. And frankly, the period from


Visually Impaired Latinos in America: My Thoughts on Hispanic Heritage Month

As Hispanic heritage month approaches, I think it is important to recognize the values and ethnic background and contributions that Latinos make to American society. First, Hispanics or Latinos are a multi-racial group. We are black, white, mestizos, as well as European-descended. So, Latin Americans are multi-racial. In my opinion there are several types of Latinos in America: those who are born here, are brought young, and others that come when they are adults. The message that I would like to convey is that Latinos in America should try to keep their values, background, and identity. Thus, they become part of a multi-cultural


Swimming Up the Mainstream

Editor's Note: With Labor Day behind us, the majority of children are back in school. The new school year always brings challenges as the children adjust to new classrooms and increasing demands. While we all get in our school groove I thought it a good time to share a blog post written by a woman who is blind who shares her perspective and memories of “swimming” in the mainstream. The Muppet character Kermit the frog sings a song entitled "It Ain’t Easy Being Green." Going to public school with a visual impairment can seem like being green when everyone else is white, black, or some shade in between. It can feel like swimming against the


Parents of Teens Who Are Blind or Visually Impaired: The Foundation for Your Child’s Transition Goals This School Year

It feels like yesterday you first laid eyes on your precious one. I know. The days were long, but the years flew. Now it’s high school. High school! That means your child’s adulthood is rapidly approaching, and it’s time to prepare him or her for a satisfying life as a grown-up. If a “satisfying life as a grownup” truly is the goal, the important questions to ask your son and yourself in your quest to support him are: What leisure activities would my child enjoy as an adult? How can my child be active in his community? Where would my child want to live? What job would be a good fit for my child?


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


Back to School: Educational Priorities for Children Who Are Blind or Visually Impaired

This year my oldest daughter, Madeline, will begin kindergarten. I’m already feeling the pressure and stress of teaching and pre-teaching all academic skills so that she is successful in the classroom. Maybe this stems from uncomfortable situations like hearing other five-year-olds reading, and knowing my child is definitely not there yet. So I choose to stop and settle down those green-eyed, pride-driven thoughts. I rein them in and tell them to “Go!” My child is my child, and her value is completely independent of the ability to read, solve math


Improving “School Confidence” in Your Child Who Is Blind or Visually Impaired

For many of us, summer break is already but a memory (cue the sad music). As we look to the start of a new school year, we anticipate our children engaging in meaningful friendships and advancing in their academics and the blindness-specific Expanded Core Curriculum. We know there’s tremendous potential growth right around the corner. But in order for our children to actually advance in the classroom and in their Individualized


Parents of Children and Teens with Visual Impairments: “Your Goals” in Orientation and Mobility for the New School Year

While you can't learn orientation and mobility (travel) skills for your child who is blind or visually impaired, you certainly can support your child’s acquisition of skills. In fact, I want to share a variety of ways you can get involved, encourage, and motivate your child toward mobility success this school year. I call these “your goals,” should you accept them: Before the school year begins, formally introduce your daughter to her new


Back to School Tips for Older Students Who Are Blind or Visually Impaired

It is back to school season and thousands of students are returning to elementary schools, high schools, colleges, and universities. Many visually impaired students have to do special preparation to go back to school. As a graduate student I would like to suggest some tips in preparation for school. Preparation is very important for a student’s success in college but the most importantly in my opinion is your attitude about school. You have come this far in deciding or being enrolled in an institution—now with a little motivation and perseverance you will help yourself in the process of acquiring knowledge and skills that will help


How to Ease the Transition from Summer Break to a New School Year for Your Child Who Is Blind or Visually Impaired

Yes, it’s a substantial transition. One that repositions our children from the familiarity and comfort of home or daycare in the summer, to brand new classrooms, a different mix of student-peers, unfamiliar teachers, and more intense studies. But don’t fear, the transition from summer break to school can be done well with a little preparation and strategy, and perhaps a dash of fun! Ideas for easing the summer-to-school transition: Continually talk with your child about when school will begin, what he can expect at school, and his feelings regarding school. Sufficient sleep will be essential to our


Back to School Tips for Parents of Children Who Are Blind or Visually Impaired

Can it be true? Is it really time for back to school? It seems like the summer just started and here we are at the start of another school year. I hope you all were able to use some of the tips on the summertime activity posts we did on our summertime blog party with the website WonderBaby and all the bloggers who shared their posts. We hope to have more parties in the future as a way to share resources and ideas on important topics. In the next several weeks we will post blog entries on


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


Five Summertime Activities That Buy Parents of Preschool Children Who Are Blind or Visually Impaired a Few Minutes of Free Time

Buying parents a few minutes of rest? Am I a bad mom? No, simply striving for emotional well-being. After all, we parents must prioritize our own emotional health in order to best meet the needs of our children, particularly because our job responsibilities include repeatedly diffusing tantrums and providing around-the-clock care. Not a job for the faint of heart or mind. So how do I buy myself a few minutes of free time without the use of television? Not that I'm completely against TV, it has its purpose, but I prefer guilt-free free time that drives my daughters' learning, creativity,


Traveling with a Child Who Is Visually Impaired: It's All About the Journey

Traveling with children is a challenge at any age. So I have to say this isn’t about traveling with a visually impaired child, but traveling with any child. We have a core group of children who are the current family. So, what the heck is she talking about core family? We have a large family of 14 children. 11 of them are adopted. The most living at home at any one time was 9. As they grew up, we added one or two more through birth and adoption. Our children were of various ethnic backgrounds, the oldest adoption was 12, and had a variety of developmental/emotional needs. Nowhere in here did I say “Special,” because each was special and unique


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


Summer Blog Party: Hot Fun In the Summertime for Kids who Are Blind or Visually Impaired

We are kicking off the summer season with a roundup of items to help you make the most of activities, events, and just plain old ideas that can be fun. We are excited to be co-hosting a Summer Blog Party with WonderBaby. Bloggers, please join in by writing about your summer plans and sending us the links. We will share all the posts and links with families. From FamilyConnect you can sign up with FamilyConnect to get alerts as cool


Finding Fun Things to Do When You Are Visually Impaired

There are a couple of ways to find out fun things to do when you are visually impaired. Find local organizations or groups that organize events or activities. In my example, I found a running club organization called Achilles International. They organize races and events, and they pair volunteers with people with any disabilities to run or walk. There is probably a local organization that would have fun


In Honor of Father’s Day, A Son’s Thoughts About Parenthood and Blindness

With the Father's Day approaching, it is important to recognize the support and care of parents. I would like to share my experiences when growing up. Equality One of the things that my parents got right was promoting a sense of equality when growing up. Promoting equality for me means treating each child the same way and providing the same opportunities, rights, and responsibilities. I have an older brother but of course, all families are different you might be a single child or have several siblings. My parents always encouraged us to do things the same way even though I am visually impaired.


Harnessing Adversity: A Chat with Erik Weihenmayer and Amy Van Dyken-Rouen

We're delighted to host a guest post today from Buddy Levy, presenting his interview with Erik Weihenmayer and Amy Van Dyken-Rouen. What do a blind outdoor adventurer and an asthmatic six-time Olympic gold medalist swimmer have in common? Turns out, the same thing that all of us have in common in some form or other: adversity. Everyone faces adversitywhat matters is how they face it, according to Erik Weihenmayer and Amy Van Dyken-Rouen, who got together recently for a web-hangout interview ahead of this summer’s No Barriers Summit, to be held in Park City, Utah July 9-12. Van Dyken-Rouen, a celebrated U.S. Olympic swimmer who was paralyzed in 2014 in an ATV accident, is the event's keynote speaker at the opening ceremonies, and Weihenmayer, a


My Suggestions for College Success

We are pleased to introduce you to Irwin Ramirez who will be blogging for us this summer. Irwin is completing his Master’s Degree in computer science and is working as an intern for the American Foundation for the Blind’s web department. He will be sharing his experiences and perspective as a young adult who is blind. His areas of interest are accessibility consulting, web design and assistive technology training. He was born in Guatemala and moved to the United States when he is 17. I urge you to follow his blog, ask him questions and post comments. I would like to share my college experience as a visually impaired student. There


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


A Sense of Community

My sister invited me to her granddaughter’s (she’s 2) birthday party. I love to go because there are always lots of kids and it is outdoors. She bought a bouncy house and said I could use it for my boys’ birthday parties if I wanted to. Oh, major downer for me. I thanked her and said, “I guess you don’t understand that because my children are special needs, their social circle of age appropriate friends is smaller. We usually have family parties.” Actually, I’m glad she didn’t understand because she always includes our children in family gatherings. I make sure we have the means to deal with the need for a hasty exit if needed. We home school and our twins, age 8 are both special needs. Vinnie is blind. Brandon has hydrocephalus and a seizure


Translating the Visual

Imagine a World Without Color Try to imagine the world without color. What do you think it would look like? Perhaps you envisioned a world of black and white, given depth by varying shades of grey. Maybe you pictured a world out of a crisp new coloring bookall white with solid black outlines giving shape to people, buildings and trees. Now, how do you think a blind child perceives color? And what about a child who has been blind since birth? Is it even possible for a blind person to comprehend color? And, does teaching about color really even matter? Yes, of course! Why Teach a Blind Child about Color? The moment I found out my daughter Madilyn was blind, which was moments after she was born, I immediately thought of all the


Braille for Children's Clothing

I wanted you to know about a parent who has created a solution for helping her child be independent while dressing. Gracie Benedith has created these items and sent me the pictures and descriptions. As a mother of a legally blind child, I saw the struggles that my son had to deal with getting dressed every single morning. My husband and I had to get up earlier to assist him with his clothes while trying to teach him how to get dressed independently. I suddenly had an epiphany to start a clothing line for blind and visually impaired people called Braille Code! Why not have a clothing line that they can call their own? I designed this line with style that would


Louis Braille's Gift of Furthering Independence for People Who Are Blind or Visually Impaired

I am no stranger to the theme of independence. My husband is a member of the United States Air Force. We live on an American military base in Japan. I can't leave my house without being reminded of the independence I have been gifted, for I live alongside those who protect it and sacrifice for it. Oh, how thankful I am! And there's the independence my husband and I daily (okay, hourly!) instill in our preschool children. For example, I often see a dreadfully messy room, and while it would be ten times less of an ordeal if I quickly reorganized it, I choose to call out, "Sweethearts!" (I say


But I Haven't Been to Holland

I would like to introduce Stacey Dodd as a parent who has submitted the following blog. You may follow her on her blog Minding Thomas. I had never heard of the well-known essay 'Welcome to Holland' until it was mentioned to me via a former work colleague upon finding out how my boy was doing. It was suggested for me to read and I honestly didn't bother with it. I ended up coming across the essay through a national support network's booklet, 'Stories to tell.' I read it and I could relate to it for sure. I wondered about that last sentence and how we come to a certain point along this journey where we realize that we have to make a decision as to whether or not we


My Daughter's Challenges with Sensory Stimulation

I have no doubt that my daughter Madilyn learns the most from a multi-sensory experience. With it, she gains true comprehension. Madilyn is completely blind, diagnosed with bilateral anophthalmia, and struggles with sensory stimulation. There was a time not so long ago in which taking Madilyn (now 9) on a trip to the museum wasn't even an option. It's not that we never tried, but prior to 2013 most activities that involved an unfamiliar setting with various noises and voices ended in failure. For our family, failure often looked and sounded like an overwhelming, crying fit fueled


A Book By and For Dads of Children with Disabilities, in Honor of Father's Day

Dads of Disability: Stories for, by, and about fathers of children who experience disability (and the women who love them) It is not often that we see a book written by fathers of special needs children about their experiences. Dads of Disability: Stories for, by, and about fathers of children who experience disability (and the women who love them) focuses on fatherhood themes, and was compiled and edited by Gary Dietz, the father of a special needs child. Dietz crafted this book to be shared


Embracing the Fear That Comes With Being the Parent of a Child Who Is Blind

Alyssa at her ski lesson I am the mom of 16-year-old twins, Ryan, who is sighted and Alyssa, who is blind. My children are AWESOME!!! I have friends, looking to adopt, and they have asked for notification of any child who is visually impaired, as they would like the opportunity to adopt him/her. This makes perfect sense to me. Having a child who is blind certainly does add a different element to our liveswe have to talk more, touch more, and choose our vocabulary carefully. We have to be fearless, because our fear will inspire the fear of othersteachers, principals, care providers, and


Socialization: How We Teach Matters as Much as What We Teach!

"If a child cannot learn in the way we teach, we must teach in a way the child can learn." - Dr. O. Ivar Lovaas, UCLA I like planting! I plan what, when, where, and how. I know the who: me. So if my crop fails, it is my fault. Same with my planning school work for the next year. I do it much the way I plan my garden, with a lot of the work done mentally in my head and an awareness of whether conditions are right for what I am planning/planting. Then I peruse my favorite catalogues. I do a lot of mental work before I ever start. I look at what we have done and what do I/we need to do to get to the next level. I am getting to the end of the year. Which means I not only evaluate (not formally, although you could) what we have


The Big Picture: Planning for the Future

Well, it is snowing again, actually snow, sleet, and freezing rain. The prediction for today is 3 to 6 inches and/or 6 to 12 inches and it is going to last into tomorrow. We live in the border region, the foot hills. A few miles makes a big difference. So, today, I have time to brood/think. No church for us. What is in our future? I do mean "our." My twins will soon be 8. I am 61. Will I be in sufficient health to raise our sons to adulthood? Will Vinnie continue to progress as he is now? Will Brandon's retinopathy of prematurity (ROP) get worse or remain stable? All questions we face each day. I tend to push those to the back of my mind and continue on with our daily routine. Do you


Age Is Just a Number

I was recently asked some questions about home schooling by a parent, which got me thinking. The concern was repeating the same curriculum 3 years in a row. As I was writing back, I realized that repeating grades and information is common with kids in public school special education programs. This has been true in our own family. We had a young man, in high school, who kept repeating 4th grade math. When he finally wanted to join the home school group, he had just one request. He didn't want to repeat 4th grade math again. Our answer to him was we would test him and find out where he would be placed in the curriculum, and then he would progress from there. He tested at the 4th grade math level, which is where he started. He never repeated it again. After he


Three Gifts My Parents Gave Me

Editor's note: Today we are delighted to welcome CareerConnect mentor Dr. Mahadeo A. Sukhai as a guest blogger. Dr. Mahadeo A. Sukhai Growing up in the Caribbean, as a partially sighted child, was an interesting experience I had no appreciation at the time that my childhood was any different from that of my siblings, or that it could have been different from that of any other child. One significant reason for that was that there were, at that time, in the 1980s, no significant


Home Schooling a Blind Child: A Day Off

We're pleased to host a second blog post from Susan Harper, who has been home schooling for 22 years. by Susan Harper The joys of home schooling are the flexibility to work schedules around whatever. Today, my son is sick for the third day. He is down on the couch, never a good sign. This bug has gone through our entire household, one person at a time. I had to cancel OT and O&M this week because Vinnie is sick. He is rarely sick because he doesn't bring home whatever is circulating at public school. That too is a benefit of home schooling. However, his older sister started college and brought home this lovely viral thing and it decided to stay. I am using this unexpected


An Out-of-This-World Visit to the Space Shuttle Trainer

Editorial Note: We are pleased to welcome dad Mike Cavanaugh back as a guest blogger. You might remember him from a past post about the role braille has played in his son's life, as well as his own: Touching Letters, Touching Lives. Mike and his son recently visited the Museum of Flight in Seattle, Washington, and with a little patience, parental advocacy, and some adaptations from the museum staff, had a great visit. What have your museum-going experiences been like? Which ones can you recommend? By Michael Cavanaugh I don't know what the Cold War, Korean War, and the start of the Vietnam War were like. And I can only imagine


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


Like No Other: A Son's Tribute to His Mother

We are delighted to welcome Greg Botting as a guest blogger today, writing a tribute to his mom in honor of Mother's Day. Happy Mother's Day to all of our wonderful FamilyConnect moms! By Gregory P. Botting If there ever would be an award for "best mother of a child with a visual impairment," I believe my mother would qualify as a top contender. However, before I say why my mother in particular would be a top candidate for said award, I should probably go into a little background about myself and the remarkable woman who is my mother. My name is Gregory (preferably Greg) Botting, a blind college student from Ionia, a small town in southwest lower Michigan . . . Sort of. (I was never very good with pointing out where I live on my palm.) Born in 1994, my


Our Last IEP Meeting

We are so pleased to welcome Jeannette Christie as a guest blogger today, writing about her very last IEP meeting and the emotions it raised. We always welcome guest bloggers. If you are interested in sharing your story with the FamilyConnect community, please write to familyconnect@afb.net. By Jeannette Christie, Parent Representative/ NYC-NAPVI Branch Manager Today was our last IEP meeting. Going into the meeting, I was very excited that I didn't have to sit through one more ever again. I do have to say that in all the years of IEP meetings we were pretty fortunate that they were pretty much smooth sailing. I know that many families unfortunately can't say the same. So as I am sitting through


A Trip to Work with Dad for Take Our Daughters and Sons to Work Day

Editorial Note: Today is the 20th annual Take Our Daughters & Sons to Work Day! Previously, we asked Joe Strechay to reflect on this opportunity for parents, guardians, and mentors to introduce our children who are blind or visually impaired to the world of work. Today we are delighted to welcome CareerConnect(r) mentor Paul Kurtz as a guest blogger. Paul, a computer systems manager and analyst who is blind, took his son to work so he could experience office life for a day. The experience helped his son figure out what he did and didn't want in his own career. How are you talking to your children about what they want to be when


There Is No Other Love Like a Mother's Love

I feel confident in saying this with my experiences raising three children and knowing and hearing so many families' stories for so many years; seeing and feeling the strength mothers have as they face their challenges while having the endurance to overcome the unexpected difficulties. No matter how tired they are they somehow go beyond to make sure their child(ren) are cared for to the utmost. There is no other love like a mother's love for her child(dren). Mothers are nurturing, protective, and instinctive in caring for their children; it is universal.


Six Things You Don't Know About Parents of Children Who Are Blind or Visually Impaired

This article really resonated with us: Six Things You Don't Know About a Special Needs Parent. What six things do you wish more people knew about parents of children who are blind or visually impaired?


My Child is Amazing Because...

The National Association for Parents of Children with Visual Impairments (NAPVI) is a membership organization of parents from throughout the United States and around the world. The organization is lead by its National Board of Directors who are parents representing different geographic locations and our statewide and metro affiliate parent groups. Please let me introduce to you one of our parent leaders, Pam Stern, the NAPVI Region 3 Representative for the states of Illinois, Indiana, Iowa, Michigan, Minnesota, Missouri and Wisconsin. Pam is a mother of a daughter who is blind, who has graduated college, and now has a successful career. Pam is devoted to the mission of NAPVI to provide parent education, connection to much-needed resources, and emotional support when


Getting Ready for the Holidays and Spending Time with Your Family

It seems it's a busy time for many families as we get ready for the holidays, whether it's decorating, shopping, or preparing food for special dinners and parties with family and friends. Searching and finding just the right gifts for your loved ones can be fun and can be challenging. If you celebrate the holidays by sharing gifts we'd love to hear your ideas of presents you've given to your child who is visually impaired that you think other parents would want to know about. I like the holidays because the kids are out of school and many people take the time off for vacation. We have more free time to spend with the family to enjoy each


I've Learned to Be Thankful Through Life's Surprises

I've been thinking back on my time as a young mum, just starting out on life's path as a responsible grownup. I was looking to do all the right things in having a family and a plan for the future. My son's diagnosis with an infant eye cancer gave me one of my first lessons that life is full of surprises and no one really knows what will happen each day and into the future. At this period of time I was in extreme grief and shock. I remember when his ophthalmologist was explaining to me the treatment regimen that would last intensively throughout his childhood; I was feeling that our family's lives had been turned upside down from any plans for


Born This Way: Inspiration From a Pop Star

Joe Strechay, who has blogged for FamilyConnect in the past, writes movingly about what Lady Gaga's self-acceptance anthem, "Born This Way" means to him. Here's a brief excerpt of the song's lyrics: Whether life's disabilities Left you outcast, bullied, or teased Rejoice and love yourself today 'cause baby you were born this way* And here's a link to Joe's blog post on AFB: Inspiration from a Pop Star: Lady Gaga's "Born this Way". I hope that all of our children can come to feel the same proud, joyful sense of self-acceptance! *Paul Blair, Fernando Garibay, Stefani Germanotta, Jeppe Breum Laursen, Born This Way, Born This Way, BMI Repetoire.


Happy New Year!

From time to time I invite guest bloggers who are also parents of children with visual impairments to express what their experiences have been. I hope that "A Parent's Voice" can be a forum where we can all interact with each other. I am very pleased to introduce you to Maribel Montes, whose son has aniridia. Many of you may know her already from her posts on the FamilyConnect message boards as a parent coordinator. Thank you, Maribel, for being a vital part of the FamilyConnect team!


Finding a Good Babysitter for Your Child Who is Blind or Visually Impaired

An article in the New York Times yesterday addressed the issue of finding good childcare for children with special needs. As they wrote: "Competent, reliable baby sitters are closely guarded treasures for most parents; for families who have children with special needs (but who do not qualify for state-supported respite care), such baby sitters may exist only in the realm of fantasy. Those who need a break the most, then, are often the least able to find someone they trust to provide it." It's a lot of work raising


The Greatest Love: Celebrating Mother's Day

Last Saturday, the annual spring preschool conference, New England Regional Seminar for Families of Children with Visual Impairments, was held at Perkins School for the Blind in Massachusetts. Each year, parents with their infants and toddlers who are visually impaired, their brothers, sisters, and grandparents from the Northeastern states gather together. It is an amazing experience and meets a deep need for these families because often this is their first time to meet other families and to learn about all the resources and information available to them. NAPVI has been a part of the planning team for the conference


It's Time Again for Kids to Go Back to School!

I hope you had an enjoyable summer spending some extra time with the kids with looser schedules. Depending on which part of the country you're from, your kids may have already gone back to school and some are just getting ready to start after Labor Day. As a mom who's raised three children I feel nostalgia for the "back to school" time of year as the children grow and mature, and each new year brings new adventures and challenges. Our early preparation includes making sure the children have stylish clothing, school supplies, and in today's world, making sure they are up to speed with the latest technology! Then there's being the


From Proud Mom of College Graduate

As a sequel to my blog post "To My Son With Love," I am proud to announce my son Alex just graduated from Cornell University magna cum laude! Alex, born a healthy, 10 lb. baby boy, was diagnosed with a rare malignant eye cancer at 10 months old. As parents, we were devastated. The whole world felt like it was going to drop from underneath us that day. Alex's right eye was removed immediately to save his life and he underwent over 5 years of cancer treatment to save his remaining eye and his life. It changed our whole family's lifeyears of a regimen of putting Alex under anesthesia to treat and monitor the sight in his remaining eye, enduring the suffering and anxiety


Happy Mother's Day!

Hope you all had a nice Mother's Day with your families. I had a great dayit was really restful (so much so that this is a belated Mother's Day wish to you all!). As mothers we are always taking care of everyone else's needs and it's difficult to carve out time for taking care of you! It's especially important for parents who have children with medical and educational issues; with all of the additional appointments and preparation it takes, it's very easy for mothers to put their personal needs aside. As I've heard quoted before from a comedian: When traveling by airplane and the flight attendant gives the safety briefing, he/she says, "If traveling with a young child, please make sure to put your air mask on first so you then will be able to assist the child with


Happy Father's Day; Fathers Are Key

Oftentimes mothers are seen as the primary caregiver for children, and even more so when the child has a disability. But it is important for dads to be equal partners with mothers in providing support to their blind child. This Father's Day we acknowledge the important role of fathers and the influence they can have in working with their children to reach their full potential. Fathers have also played a key role with the development and direction of the National Association for Parents of Children with Visual Impairments (NAPVI) by serving on the national board, leading the development of statewide affiliate parents' associations, and influencing educational and medical policies affecting children on the national level in Washington, DC! Currently NAPVI's President is a


To My Son With Love

My son Alex is flying off to Hong Kong today, halfway across the world on his own, to spend the summer doing a medical research internship at the University of Hong Kong! I have never felt such deep and strong feelings of pride as welled up inside me when we had our goodbye hug. My son must have sensed my emotions as he lifted my new sunglasses that covered my tears of pride, and told me "Thank you, Mom, for your love and all that you've done to support me to make this opportunity possible." As my fellow parent and friend Kevin O'Connor says to parents, you never forget the feelings you have as a parent on "diagnosis day." As I walked away from my son, I remembered clearly diagnosis day, when we discovered Alex had a malignant infant eye cancer, and my deep feelings of


Exploring the Blogging World

As a new blogger, it's nice to see others exploring the blogging world, especially moms like myself! Yesterday, a coworker sent me a link to Jen's Little Space, a new blog from Jen O'Neill. Jen is a mother of two beautiful girls, Camille and Olivia, and her family is featured in the video section of FamilyConnect. I think I speak for all of us at AFB and NAPVI when I say it's great to see other families connecting and supporting each other through social media tools like blogs. While I have enjoyed reading all of Jen's posts, the "On Crickets" entry really hit home. Jen explains


Happy Mother's Day to All the Moms of Blind and Visually Impaired Children Out There!

Here's to you! Best wishes to you on Mother's Day as you spend time enjoying your families today. I hope you take the time to think about how much you do for your family to enrich their lives and relax for a moment to pat yourself on the back and smile, saying "yes, I am a wonderful mom." I have admired and appreciated all of the mothers I have met through the years who are working so hard to make sure their blind and visually impaired children have the love, education, and resources they need to thrive. I feel there is no other love stronger and more enduring than that of a mother for her children. A mother's love is a phenomenonyou are their constant and your motherly instinct knows best. Mothers of children with disabilities are some of the most powerful


Tom Sullivan Addresses Parents at Preschool Conference

This weekend I enjoyed being with 300 parents and their children with visual impairments with their brothers and sisters at the New England Regional Seminar for Families of Children with Visual Impairments that is held each spring on campus of Perkins School for the Blind in Massachusetts. Most of the parents were attending for the first time with their blind infants wondering how will they cope, what is the future for their child, and what do they need to know as a parent? One of the most meaningful parts of the conference is the interaction amongst parents with each other through the Parent to Parent Support Groupsparents have the opportunity to meet other parents of children that have the same eye condition. Given that all causes of childhood blindness are rare,


Meeting Legendary Stevie Wonder!

I was attending a professional conference in California last month and had a nice surprise by meeting the legendary Stevie Wonder as he was perusing the exhibit hall, just like our friends and kids who are visually impaired. It reminded me of how important the vision community of professionals, parents, and individuals who are blind is, who all work so diligently and passionately to coordinate conferences gathering in the same place to provide a buffet of resources, knowledge, and networking with others where otherwise there would be none. Even for Stevie Wonder, who is famous and probably has the resources for mostly whatever he needs, but was able to be a regular blind guy enjoying and learning and networking with others at this conference. Where else would he have this