FamilyConnect: A Parent's Voice
by Susan LaVenture
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 NAPVI as a resource and the NAPVI National Conference from another mother at the hospital waiting room when both of our children were undergoing surgery. I really wanted to go but didn’t think it was possible, being weighed down with insurance problems, medical bills and raising a young family...until I came across an article published in NAPVI's AWARENESS magazine which gave ideas for funding sources to attend a NAPVI conference.
I was able to get funding from a local Lions Club and co-sponsorship from Perkins School for the Blind and attended my first NAPVI conference in Dearborn, Michigan in 1989. I met so many families who are still friends today and learned so much. I hope to meet you and your family in Chicago!
Read about Funding Sources for Parents.
Executive Director NAPVI
by Susan LaVenture
We are organizing a phenomenal conference program for you and your family. The conference welcomes parents of children of all ages with visual impairments, blindness, and additional disabilities including siblings and extended family and friends.
The conference location is at The Chicago Lighthouse for People Who Are Blind or Visually Impaired, close to the conference hotel. The NAPVI discount room rate is $169/night at the Chicago Marriott at Medical District/UIC. We will be in Chicago’s “Little Italy” that boasts over 50 restaurants and bars within walking distance.
This year’s conference will be a great opportunity for families to network with families throughout the United States and around the world. You may meet a family who has a child with the same cause of visual impairment as your child at our “Eye Condition Networking Parent Groups,” one of many popular sessions. Pediatric ophthalmologists will present information about the eye conditions at each session. Representatives from many of the national organizations for specific eye conditions will participate in the program.
This is a great opportunity for you to learn more about raising a child with visual impairments. There will be inspiring presenters and fascinating workshop session topics and speakers, all of whom are experienced parents and professionals in the vision and health fields. They will share their knowledge with you, whether your child is a newly diagnosed infant, an exploring toddler, or a teenager preparing for his or her future.
The Children’s Program offers a variety of interactive opportunities for all ages including siblings. Organized by the United States Association of Blind Athletes (USABA) and Camp Abilities, the program includes sports such as Beep Baseball, Goalball, Yoga, Track and Field, and Beep Kickball, as well as recreation and arts activities.
Please visit us at www.lighthouseguild.org/napvifamily2015 for conference program details and updates.
We hope you and your family will plan to join us in Chicago!
Executive Director NAPVI
- News from FamilyConnect
by Susan Harper
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 disorder, along with vision issues, all of which are stable at the moment. Whew. We’ve had a 12 month period of stability after 2 ½ years of multiple shunt surgeries and daily seizures. New shunt and new seizure meds finally mesh and we are golden. School is going great for both boys. All these medical/developmental issues can be limiting in terms of social/community activities. It would be just as limiting in a school setting, only with more people around and I’d have to worry about one of them getting sick and hospitalized.
What happens to parental socialization and community activities? We find church a great source of socialization and community. Our local Community Theater does a great job with inclusion. There are activities for all ages and abilities, with a kids’ play in winter and 4 weeks of summer Theater Camp. My husband and older daughter are involved in community band and a Brass group. We all go to the concerts and plays. We like to host gatherings. It is easier to deal with a problem as it comes up without everyone going home. There is, “No one size fits all”. Our church does something called, “Balloon Buddies”. They pair a senior with a child. They exchange information and celebrate birthdays and holidays with a card and/or acknowledgement. Once or twice a year there is a reception/party for balloon buddies sponsored by the Sunday School. It really makes both feel special and provides another facet of community which is mutually beneficial.
Providers are also people we rely on to help us and guide us. Our TVI comes twice weekly. She provides education for both my son and consultation to me and other providers. The occupational therapist works on fine motor skills, independent living, ADLS, as well as a consultant for me. Speech Therapist works on a consulting basis with me and the TVI.
Orientation and Mobility is kind of a mix of all of the above. She and I work to incorporate school lessons into O & M sessions. Since it has been cold (many days below zero) and snowy (measured in feet or yards), getting outside to practice cane skills is kind of difficult. One of the lessons we coordinated was a trip to the bank to deposit money earned through school. We set this up with our local bank manager on a quiet day. They also go regularly to the library. We are brainstorming other options close by. These folks are essential to our home school. We could do it alone, but these folks make it so much easier and a lot more interesting and fun.
How could we forget the medical providers? We see them frequently. It gets me out shopping. Never waste a trip. It is a chance for some 1:1 time or an “individual date”. Because we are rural we have to drive 2 ½ hours to the specialist and there are 4. We knew that when we chose to live here 4 years ago. The benefits outweigh the inconvenience. Maine is a large rural state.
You all know I love family gatherings. This takes on more significance at least for me as I get older. I value those relationships. They are the ones who are most likely to accept my children as they are. We have great neighbors who are like family and we all watch out for each other. Then there are the musical groups, with Brass rehearsing on our front porch in summer. Nothing like a BBQ, porch concert, or a bon fire, summer or winter!
I enjoy support group, even though it is geared towards adults. WE share a lot and are learning from each other things that are helpful to both of us, especially technology. They even invited Vinnie to give a demonstration of his Smart Brailler. He did it which was even more incredible. The group is working within the community to make walking safer, by adding cross walks and changing some of the traffic flow, which they found to be dangerous. This is such a diverse group, which makes it all the more fun and interesting. It gives me a glimpse into the future too.
The internet has connected people in so many ways that were not possible just a few years ago. They are my go to source when I have a question or need to find something specific. They are a great educational resource. It is a good way to stay connected to friends and family far away. There are just so many options!
My favorite thing is traveling in the motor home. Since we are retired, we have more time to do these things. I love RVing. The whole family can go and be in our own beds. Again I can make those quick adjustments as needed right on the spot. We see and experience so many wonderful things. WE have met and made some great friends along the way. If the situation goes south, then you make a hasty retreat and never see them again, LOL. Seriously, this is a great way to socialize and experience new things along the way. Best source of Social Studies I know!
How big is your community when YOU add it all up?
by Hillary Welch Kleck
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 book—all 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 beautiful sights she would never see, like the glowing red sunsets, crystal clear blue waters of the oceans, and intricate details carved into the top of one of my favorite pieces of architecture—the Chrysler Building in New York City. I had been passionate about art and architecture since I myself was a child, and now that I had become a mother, I wanted to be able to share these things that were important to me with her. As a parent, you hope to pass down your talents and passions, so maybe your children's lives will be enriched in a similar way yours was, and maybe they'll carry some with them after you're gone, and pass them down to their children. It made me sad to think I'd never have the chance for the two of us to marvel at the talents of Da Vinci or the natural wonder of a rainbow spanning the sky overhead. But I was wrong to think it wasn’t possible...
Once I realized Madilyn had her own way of perceiving the world using her ears to listen and her hands to touch, I opened my mind to find ways to translate all the things she couldn’t see. I learned you don't have to have sight to truly appreciate all of the visual treasures of the world. Instead, there are so many beautiful ways to convey an image into a medium a blind person can interpret through the other senses. Madilyn's favorite sense for learning is hearing, so I describe to her all that I see as much as possible, including everything from the icicles forming on the trees that glisten in the sunlight, to the changing scenery of the trees, buildings, and power lines passing by as we drive down the road; and in the morning, I tell her which colors are on her shirt and pants she chooses to wear. I use the most descriptive adjectives, and encourage her to make her own descriptions in predicting what something "looks" like. Sometimes we even make it into a game. Nevertheless, these needs prove the importance of literacy and language for a young blind child for building a foundation for understanding the world.
Using the Other Senses to Interpret the Visual
But are verbal descriptions the only way to teach a child with visual impairments? Most certainly not! In fact, a multi-sensory approach can be the best way to bring an image (or classroom lesson) to life by combining some or all of the senses to build a truly comprehensive representation! Colors can be represented by a scent and taste, like strawberries for red or limes for green. Maybe you could taste test a bag of Skittles and name each color and flavor along the way. (Hint: This would make a GREAT multi-sensory game!)
Have you ever thought about how to touch a color? When you see a red ember in the fire, you think HOT! Temperature can represent colors just as well (but be careful!) where hot equals red and cold is blue, or perhaps white. Everything from works of art to simple drawings can be made into tactile images so that a blind child can feel the curvature of a rainbow and the bands of color that pop out against the blue sky background. Is there a rainbow out now that the rain has passed? Go outside and have your child reach up as high as she can, then explain that the rainbow is even higher! Talk about how the air feels. Maybe it's warm and muggy now that the summer thundershower has moved along.
Then, the next time you tell her, "There's a rainbow in the sky!" she'll remember the way she felt when she went outside that day, or touched the picture, and maybe even “Tasted the Rainbow” when ate some Skittles! And though she may never experience the sight of a rainbow just like you, she'll have her own understanding of what it means when a rainbow is in the sky, and that is what really matters.
Be mindful that it’s extremely important not to completely ignore the concept of colors with your blind child because visual elements of all sorts will continue to be a part of your child’s life, whether she can see them or not. So be creative and flexible when it comes to building a basic understanding of these concepts; and most importantly, HAVE FUN doing it!
- Personal Reflections
by Scott Truax
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 appeal exclusively to the blind and visually impaired. Braille Code consists of:
- Polo shirts with my three blind mice or Braille Code logo with the braille back patch,
- Button-down shirts and blouses with braille number patches (inside) on each side for correct buttoning,
- T-Shirts with logos and back patches,
- Socks with back patches,
- Baseball caps with Braille Code logos,
- Right and Left adhesive patches to adhere to the inner tongue of any and every shoe to put on correctly!
All these items will assist children to get dressed more efficiently and independently! Although the line appeals to children, this brand can also assist adults who may have been dressing themselves for years to put on button-down shirts, socks and footwear correctly to save time on getting ready and walking out the door on time.
My goal is to give parents like me a way to help/give our children a sense of pride, independence, and acceptance of who they are with style!
You may contact me at firstname.lastname@example.org if you would like more information.
- Social Life and Recreation
- Planning for the Future
- Low Vision
- In the News
- Personal Reflections
- News from FamilyConnect
- Orientation and Mobility
- Arts and Leisure
- Online Tools
- Getting Around
- Ask the Experts
- Readers Want to Know
- Home Schooling
- Social Skills
- Autism Spectrum Disorders
- Cortical Visual Impairment
- Assistive Technology
- Public Policy
- Home modification