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#DBFamilyFunFacts


Every Friday NCDB posts a Family Fun Fact on Facebook and Twitter. These stories, photos, and videos celebrate families of children who are deaf-blind and provide tips and ideas that might be useful to other families. They are gathered and provided to us by Family Engagement Coordinators from state deaf-blind projects across the country. Below is our archive of Fun Facts organized by state. 

To see our new posts each week, follow NCDB on Facebook and Twitter!


ARIZONA

Soliz loves the kitchen, and recently after mealtime he started guiding us to the sink. We decided to see if he could help us wash the dishes. In the video below, he is with his dad washing out his syringe and tube using hand under hand technique. He loves helping to wash dishes!  [4/8/16]


Soliz and Camila love being outdoors! We try and go hiking and camping with them as much as possible. They can't walk independently yet, but Soliz was able to hike down the hill with assistance. They love sitting in the dirt and enjoying the fresh air with their doggie companion, Sammy. And the hike back to the car was full of proprioceptive input. They love it!  [4/15/16]

Soliz and Camila sit with their small dog on stone steps on a hike.

Camila has a very special bond with her Grandma Jojo. They swim together whenever they can. In this particular photo Camila is completely relaxed as the water helps bring her out of gravity. There are other times she is very active in the water and able to work on skills like holding onto a soft toy, something that is difficult for her to do on land. She also loves holding her breath and going under the water!  [4/22/16]

Camila floats on her back while her grandma holds her head


A family in Arizona recently ran a 5k. When they got to the finish line, they took Soliz and Camila out of their running strollers and they walked across the finish line in their walkers. This was a great way to build self-esteem as the crowd was cheering for them as they walked across and completed this awesome goal!  [4/29/16]

Soliz and Camila cross the finish line


CALIFORNIA

Over the holidays, there are always lots of sports on TV. Remember that taking time to share your love of a sport with your child can be a cool thing to experience together. Norman and his dad used to hang out and watch soccer together, and you can tell Norman loved it.  [12/16/16]

Norman and his father wear matching green and white striped jerseys

In the spirit of gift-giving at the holidays, we hope you enjoy this super-short video of a young man named Norman and his mom, Myrna. It was their Christmas tradition to surround Norman with all his presents and then they all helped him open them. We hope you remember to cherish those you love this holiday season—as they are the real gift.  [12/23/16]


Happy (almost) 2017! New Year’s Eve can be a time of excitement for all children—but it was especially true for Norman. It was a tradition of his family to celebrate New Year’s in Las Vegas. Imagine all the sights and sounds that he was able to experience. Hoping his smile brings you joy as you embark into the coming year!  [12/30/16]

[Video: Norman smiles during a New Year's celebration.]


In this video, Sonia Hernandez introduces her daughter, who is deaf-blind. (Turn on the captions for the English translation.)  [4/7/17]


Sonia Hernandez talks about why her daughter was born deaf-blind. (Turn on the captions for the English translation.)  [4/14/17]


Sonia Hernandez talks about what her daughter likes to do for fun. (Turn on the captions for the English translation.)  [4/21/17]


Valerie, who is deaf-blind, has fun exploring outdoors with her family.  [4/28/17]

Photos of Valerie at a tide pool, in a swimming pool, on a horse, at the beach, and on a seesaw


GEORGIA

Ivey's mom, Gwen, writes: "In the spirit of summer traveling and vacations, I would like to share how Ivey entertains herself while traveling in the car. Whether we are taxiing Ivey’s brothers to practice, running an errand, or driving to the beach, this keeps Ivey entertained and engaged. I found a storage container that provides the perfect OT footrest and stores Ivey’s extra medical supplies that may be needed while traveling, yet cannot be found in Walmart. I hung a car clothes bar across the backseat, added sensory items, and voila, Ivey’s very own “little room,” automotive style. This has been our saving grace in the many hours spent in my car traveling across town, to doctors, and especially on long trips. Oh, and if you want to spice things up, use Velcro to attach a musical toy or a switch to the lid of the container and let their little feet play."  [7/7/17]

Ivey plays with her


IOWA

From infancy, Hannah had a feeding tube and doctors were concerned about her being able to become an oral eater. With determination and lots of support from therapists, Hannah no longer has her feeding tube and is clearly savoring the tastes of all kinds of food. YUMMY!!!!  [8/25/17]

Hannah eats a slice of watermelon


Hannah has been doing water therapy for years and never felt brave enough to put her head under water until the other day! Once she learned how, she couldn’t stop! The lesson from this story? When the time is right, your kid will surprise you, and their potential is endless. Go Hannah GO!  [9/1/17]

[Video: Hannah is in the pool wearing goggles and arm floaties. She holds her breath and ducks her head under water for a few seconds at a time.]


Hannah's mom Samantha writes: "Recreation is such an important part of a full life for everyone! Hannah recently went out and picked out a brand new bike (with training wheels) and was off in no time flat. Watch out! Here she comes!" [10/20/17]

A young girl is on a sidewalk riding a bicycle that has a basket and pink streamers.


KANSAS

This clipboard was created by a parent in KS who wanted her son to learn the steps in his daily routine. First he gets up, gets dressed, and eats breakfast. Next he heads to the bus and rides to school. When he gets home, he needs to hang up his backpack, then he can ride his bike, have free time, get undressed and showered. Then he eats dinner, has more free time, and then prepares for bed. Why would you want to create a schedule like this? Because it helps with prediction and learning routines. When a child knows what's coming next, they are more successful in gaining independence.  [9/4/15]

Clipboard with strips of Velcro to which picture symbols are attached


Would you like your child to be more independent in the shower and make sure they don't forget a key step? A parent in KS created this visual schedule and mounted it on the inside of her son's shower so that he could be more independent when getting washed up.  He peels off an icon on the left and moves it to the Velcro strip on the right so he can visually track what's next to be done. Who knew bathing and literacy could be taught at the same time?  [9/11/15]  

Two vertical strips of Velcro with picture symbols attached


Would you like your child to become more independent when putting away their laundry or locating clothing items when getting dressed? A parent in KS placed these icons on her son's dresser so he could put his laundry away where it belongs and also find what he needs to get ready every day.  [9/18/15]

A dresser with a picture symbol on each drawer


As all parents know, anytime there is a significant change in routine, it can create anxiety for our children. In order to minimize frustration and confusion, this schedule was created by a parent whose son recently graduated from high school. It is a dry erase board that she mounted to her son's bedroom wall that shows his weekly schedule. It combines work and recreation (with certain activities being fixed and others fluctuating based on his needs and interests). Each week he is able to select recreational activities that he would like to do beyond work and his usual household chores.  This is still a work in progress, but his mom says it has already made a big difference in keeping everyone on track with what her son needs to accomplish daily and allows him to predict what lies ahead.  [9/25/15]

Whiteboard schedule with picture symbols attached


Teaching children who experience combined vision and hearing loss about abstract concepts can be a challenge. Take Santa Claus, for example.  A mom in KS took her son to meet Santa in an effort to show him that he's a person, he wears a soft red suit, and he has a fuzzy white beard and white gloves. Not so sure Devin liked the experience, but at least now he has a greater understanding of the meaning of this thing called "Santa."  [12/25/15]

Devin stands in front of Santa


Have you ever taken your child with a combined vision and hearing loss on an airplane? For some this can be a scary experience. Devin recently took his first trip, and to prepare him for the journey, his mom had him help pack, marked off a trip countdown, read him stories, and showed him pictures of where they were going. She also brought all kinds of toys and things for him to do on the plane. The airline was extremely helpful and allowed him to be the first person to board the plane so he'd have more time to get used to it before everyone else got on. All of these strategies helped him feel safe during the experience.  [1/15/16]

Devin looks out the plane window


Sports sometimes are an integral way of actively involving the community in the lives of children with combined vision and hearing loss. Check with your local Special Olympics or Children's Miracle Network and see how you can get your child involved as a member of a team. It's sure to be a win!  [1/22/16]

Devin runs with a partner on a baseball field


The importance of touch can never be underestimated for a child with combined vision and hearing loss. For Devin, it's a way of saying I care about you and I know you care about me. Make sure to hug your kiddo today!  [1/29/16]

An adult hugs Devin, who is smiling


Life as a deaf-blind young adult can be so much fun! Every Tuesday night Jackie hits the town to see a current release at her local movie theater with her family and friends (depending on what movie she selects). Bring on the M&M's!  [6/3/16]

Jackie smiles in front of an M&M's poster at the movie theater.


Ladies Night Out (away from your parents) should be something that every young adult gets to look forward to. Luckily for Jackie, she has a great friendship circle that allows her to "cut loose" without her mom and dad by her side.  [7/1/16]

Jackie smiling with three of her friends around her


Need some inspiration? Meet Jackie Kopaska, CEO of Jackie K Bags. You can see her bags and place an order through her Facebook account, JackieKBags! If you will be attending the NFADB conference next week, she will also have a table set up to sell her beautiful bags!  [7/8/16]

Jackie sits in front of a display of her bags


Trusting bonds are formed by consistent access to your communication partner and providing reliable routines. When traveling, make sure to take frequent breaks to explain and show your child what’s coming next so they can anticipate and feel safe.  [7/15/16]

A boy and his mom pose in front of a brick building


When on a vacation that requires a lot of walking, sometimes families need to make accommodations for their child. Because Ryan fatigues easily and ambulates at a much slower pace, the Roberts family sometimes chooses to use a wheelchair for Ryan so he can stay out longer and be a part of the adventure. Who would want to miss that view?  [7/22/16]

Ryan and his family pose in front of a mountain landscape.


Other than riding in the car, there’s nothing better than swimming for Ryan! Having him wear a life vest allows him a sense of security and freedom to independently explore and play with his siblings.  [8/12/16]

Ryan in the pool


Friendship is an integral part of living a happy and complete life. Since an early age, Ryan’s parents have made it a priority to maintain consistent friendships for Ryan. This helps allow him to celebrate and communicate successfully, which makes for a much happier birthday!!!  [8/19/16]

Ryan with a friend at his birthday


Take me out to the ballgame! Make sure to have your child be a part of all family activities even when it may require a little more time and effort. Little brothers enjoy having their bigger brothers there to cheer them on!  [8/25/16]

Ryan with his younger brother, who is dressed in baseball gear


When summer finally hits and Ryan has not been swimming for awhile, there’s a slight bit of reluctance. His mom, Kelly, provides him with a little extra support from behind so he can still see the water and freely use his hands to explore. Within a few minutes, he’s ready to go!  [9/2/16]

In the pool, Ryan's mom supports him from behind


Devin loves anything sweet, but especially ice cream. Nice warm days are a perfect chance to take your dessert outside and devour it. He's gonna be sticky for sure!  [5/26/17]

Devin eats an ice cream cone


Expressive communication for learners with deafblindness can sometimes be a challenge. But there's no doubt that Devin is loving life in this picture! What makes your child giggle? Whatever it may be, do more of it today.  [6/2/17]

Devin grins


This is what happens when Mom takes too long in the morning. Sometimes you've just got to take matters into your own hands!  [6/9/17]

Devin sits on the counter, smiling and holding a sealed cereal cup.


Friends come in small and big packages. Remembering to get down on the child's level is critical for mutual interaction and communication.  [6/16/17]

A young man kneels down while Devin climbs on his back


The end of the school year can be such an exciting time! As you can see, Devin is celebrating and can't wait for what summer brings!  [6/23/17]

Devin stands outside, smiling


Exercise is a valuable part of mental and physical health. For Jake, going to the gym is not only recreational, but social, fun, and a chance to see all the machines in motion.  [6/30/17]

Jake and his mom use the machines at the gym


Ever considered taking your child to an amusement park? Although Jake loves the lights and sounds of the arcade and the cool prizes, the highest, fastest, most gut-wrenching roller coasters are the BEST in his book! Go MAMBA!!!  [7/21/17]

Jake at an amusement park


Sometimes we volunteer to do something fun like filling balloons for a special event. Balloons are always fun!!! Jake puts them in a designated area once the strings are tied.  [7/28/17]

Jake fills balloons with his father


Jake loves to take apart and rebuild electronic things and then make presentations about them. Here's one he did: Old TVs Are Awesome  [8/4/17]


Riding the bike around the neighborhood is always a fun way to pass time. It's a great orientation and mobility lesson and exercise all rolled up into one.  [8/11/17]

[Video: Jake and another young man ride a two-person tricycle down a residential street.]


"When it's too hot to go out...Jake has to take video," says Jake's mom, Dee. "With help, he uses an app on his iPad to edit and piece pictures and video together. Then using an adapted color-coded keyboard with word prediction and some help for spelling, he writes phrases about the pictures and videos. Then posts them to YouTube so he can watch them over and over."

Check out the video he created about his favorite model trains!  [8/18/17]


MICHIGAN

Jacob is truly a member of his local community. He lives in his own home with 24-hour support, through a Medicaid Habilitation Waiver, and owns his own nonprofit business, Jacob Can. In the state of Michigan, soda cans come with a ten-cent deposit and people are always accumulating too many saved cans and hate taking them back to the store. Jacob provides this service to them for the redeemable deposit, which he donates to the CHARGE Syndrome Foundation. The funds provide scholarships for families to attend the biennial conference while giving Jacob a way to be a meaningful part of his local community and the CHARGE community.  [5/5/17]

Jacob and his friend Heather pose, smiling


Here are one family’s thoughts about a summer camp for the entire family: “ASL Family Camp has provided our family precious memories that will last a lifetime. We have made invaluable professional connections as well as forever friends that we can't wait to see every summer. All of our children enjoy barrier-free communication and bonding moments that keep us coming back every year."  [5/12/17]

A young girl with her face painted stands in her walker, smiling


Jonathan loved books but never liked storytime at the local community library. He couldn't see or hear well enough to follow along and so instead of sitting, he always ran away. Mom and the librarian hatched a plan. Jonathan's mom found a way to get him an FM system, and the librarian agreed to bring a second copy of the stories to all PJ storytimes, just in case Jonathan showed up. The difference was immediate. Instead of running away, Jonathan now enjoys PJ storytime with other preschoolers.  [5/19/17]

Jonathan and his mom at storytime


NEW JERSEY

Encourage interactions amongst family and friends even if everyone is not fluent in their primary language/mode of communication. Meet Molly and her cousin, Violet. This pair of New Jersey 3-year-olds love to play together. Their family teaches Violet different ways to help Molly during playtime, including: speaking face-to-face with her, tapping her on the shoulder to get her attention, and holding her hand while they walk on uneven surfaces.  [10/2/15]

Molly and Violet play together

Let’s get organized! We all know what a struggle it can be finding all the accessories that accompany our children, especially at times when we are ready to walk out the door. Create a convenient place to store these items that makes them easily accessible. This promotes independence and reduces frustration for everyone! And don’t forget the double-sided Velcro so everything stays in place!  [10/9/15]

Glasses, CI processors, and other gear stored in a plastic box with compartments


Be the Educator! Meet Ava—this New Jersey 9-year-old takes the time to educate her peers about hearing loss, vision loss, and deaf-blindness. She makes it fun by doing simulation activities so her friends have an opportunity to walk in her shoes. This enables her friends to be a part of her life while being aware of why modifications are being made in the classroom.  [10/16/15]

Ava's class learns about deaf-blindness


Let's get creative! Meet Chad, Matty, and Nolan! This New Jersey trio sure knows how to have fun! Their family uses Mr. Potato Head accessories to decorate their pumpkins. This is an amazing tactile strategy to enjoy the holiday festivities and allows them to make independent choices. This activity can also be enjoyed throughout the whole month. Thanks for sharing, boys!  [10/23/15]

The boys pose with their decorated pumpkins


Sports can be fun for everyone! Many communities offer support sports programs. These brothers enjoy participating in a hands-on soccer program. They play soccer with buddies who can provide environmental information to support the overall "goal"! It's a wonderful program that gives the boys an opportunity to be part of a team, interact with peers, and get some fresh air and exercise.  [10/30/15]

The boys on the soccer field


Look out for Ava, one of our NCDB kids from New Jersey! Ava and her family are on a mission to find a cure for Usher syndrome in a challenge spearheaded by Rebecca Alexander. Ava is the inspiration behind Ava’s Voice, a local nonprofit in New Jersey that supports children and families affected by hearing and/or vision loss. Since Ava has found her voice, she uses it to raise awareness for all children with deaf-blindness. Now she is hoping to get the singer Usher's attention in hopes that he will host a benefit concert to raise funds to find a cure for Usher syndrome, one of the leading causes of deaf-blindness.  [3/3/17]

[Video: At an event at a bowling ally, Ava dances to Usher's song "Yeah!"]


Meet Ethan and Gavin—two brothers who are enjoying living life. Like most children, the boys wanted a dog. As the brothers both have Usher syndrome, the family felt concerned that a traditional dog could pose a safety risk due to the kids' vision and hearing loss. After a search, the family found a solution at Canine Companions for Independence. Recently they welcomed Erickson, an assistance dog, into their home. Erickson has been a wonderful addition to their family, in part because of the way he was trained. He looks out for the boys so they won’t trip and fall over him, and he’s also been helpful at night. Erickson will continue his training to meet the boys’ unique needs as their vision changes. The unconditional love he provides has been the best benefit of all!  [3/10/17]

The boys pose with Erickson, a yellow lab


On our recent trip to Disney, we made sure to prepare our daughter, Molly, about where we were going by showing her ASL Nook Disney. So, when she got there, she could connect all the people and places together. It was amazing seeing her little face light up when that connection was made. We also made sure during shows she had access to American Sign Language through interpreters and close seating so she could truly enjoy and comprehend all of what she was watching. Having the appropriate access in place gave us the opportunity to enjoy the moments and create amazing memories with our family!  [3/17/17]

Molly, her father, and interpreters at Disney World


As children get older, implementing needed therapies, such as physical therapy, gets more challenging. The Morrobel boys don’t like trading the activity of gym class and fun with peers for therapeutic physical services. But maybe, just maybe, PT pays off in the end. The boys clearly enjoy the active life, as you can find them engaged in sports such as swimming and baseball throughout the year.

As you can tell from the photo below, skiing has also been a great outdoor activity for the brothers and has the added benefit of being great for their core strength. In case you were wondering how the boys manage technical challenges while engaged in sports: They use Ear Gear products to keep their processors on and tinted goggles to help with the glare from the sun and snow.  [3/24/17]

The boys pose on their skis


NEW YORK

My family and I went to Walt Disney World this summer on vacation. Carousel of Progress is my favorite show there. I like to go on it first because I get too excited about it and may become anxious. It’s pretty unique because the theater rotates. I like to sit in the front row so I can see and hear the show better!
(This week's fact is brought to you by Megan Stanger, who is pictured below.)  [9/9/16]

Megan, holding her cane, stands in front of the Carousel of Progress


When we’re on vacation I like to have down time at the pool or beach. I find it relaxing and fun, especially going down water slides. It helps me exercise and makes me feel happy! I make sure I hold onto the railing going up the stairs so I don’t slip and fall. I wear ear plugs and an ear band to protect my ears from the water so I can’t hear well with them on. When I’m at the top of the slide and ready to go down, they give me a “thumbs up” so I know it’s safe to go. I like to people watch while I wait on the line.
(This week's fact is brought to you by Megan Stanger, who is pictured below.)  [9/16/16]

Megan goes down a water slide


I love fast rides. They are fun and awesome. I don’t get dizzy but my mom does. I make sure I remove my hearing aid and glasses so they don’t fall off. I like Splash Mountain because you get wet, cool off and there’s fun songs. My family and I like to make silly faces for the big drop. We are seated in the last two rows of the log.
(This week's fact is brought to you by Megan Stanger, who is pictured below riding Splash Mountain with her family.)  [9/23/16]

Megan rides Splash Mountain


I like to do something special on vacation. This trip we celebrated my birthday with my grandparents. We had dinner in a special steak house because I am really into all things that have to do with the West and I think cowboys like to eat steak. Yeehaw! I have food allergies so we need to make sure the staff and cooks are extra careful. My parents help me with the menu and advocating so I’m safe.
(This week's fact is brought to you by Megan Stanger, who is pictured below.)  [9/30/16]

Megan and her grandparents pose at the restaurant


PENNSYLVANIA

Meet Zaman, daughter of the Rizvi family. Zaman is very fond of pictures. She often loves to go through her mom’s cell phone pictures and videos. Her parents and teacher came up with an idea to create an "Adventure Journal." It is a regular notebook with a picture at the top of each page and a couple of sentences about that particular picture. Twice a week they go through her journal, and she adores this time of the week. They talk about things like different colors and facial expressions. This has increased her vocabulary significantly. On the last page of the book there are reward stickers—if she does well, she earns her sticker!  [2/5/16]

Zaman with her journal

Thomas is a member of the Our Lady of Mount Carmel Polish National Catholic Church in Lilly, PA. Until a few months ago, Thomas’ participation at Mass was limited to sitting on the lap of his mother or another parishioner. This past October, we implemented a plan to give him a customized means of participation, specifically tailored to his needs. This plan includes a personal tour before every Mass to explore the church up close, allowing him to see, touch, and smell his surroundings as well as easing his transition into the Mass. All of this was coordinated by the role of the intervener. Thomas can now fully participate in a manner appropriate for his age and abilities. So far this has been a success and can be easily adapted in a variety of contexts.  [2/12/16]

[Video: During Mass, Thomas and his mom sign "Communion." Thomas goes to the front of the church and receives a blessing from the priest.]


Julia loves participating in sports! Our family has always loved skiing. Two years ago through VIP Sports, Julia learned how to ski and she loved it! Participating in sporting events is different for a person who is deaf-blind, but we always tell Julia to focus on what she can do!  [2/19/16]

[Video: During a skiing lesson, Julia zigzags back and forth down a hill.]


So many activities revolve around food. This year our son, Daniel, moved into a house with a roommate. Daniel is 21 and has a life-threatening allergy to milk protein. Now that Daniel is living on his own, it took some creativity to ensure he could still join his roommates and friends when they go out to eat. We decided to go to the surrounding restaurants and ask if they could accommodate him. With the restaurants' support, he packs his own meal and the restaurant heats the meal up for him. He also often orders a Sprite or Coke with his meal. Daniel loves the social aspect of going out to eat, and by taking a few minutes to preplan, he is able to enjoy this activity with his roommates a few times a week!  [2/26/16]

Daniel smiles while eating at a picnic table


Brock Kitterman is an eleven year old triathlete with deaf-blindness. To date he has completed 26 triathlons, which take a lot of preparation. We arrive at the venue three hours in advance of the other athletes to “walk the course.” A typical course for Brock’s age group is 200 meters open water swim, 6 mile bike ride, and 1 mile run. During the course walk, we need to be sure to point out any obstacles (potholes, areas of heavy road debris, drop offs such as curbs or uneven pavement, sharp bends, tree branches or roots). Brock turns on his inner GPS and is able to remember these areas once the race begins. We inform the race official that there is an athlete on the course with deaf-blindness and get special permissions to hand him his eyeglasses when exiting the water. Brock wears a special bike license plate on his helmet stating that he is both vision and hearing impaired so the other athletes are aware when passing him on the course. This has been a great adventure for Brock.  [4/1/16]

Brock competes in a triathlon


Shane is a vibrant 9-year-old boy who zealously loves life and everything it has to offer. With Shane’s deaf-blindness and his tendency to place everything in or near his mouth, his mom is always looking for new ways to make adjustments to fit his particular needs. Every Easter Shane and his mom enjoy coloring eggs. After a few memorable, fun, messy, and not always successful Easter egg projects, she found an eggcellent way for them to do it. She used two egg cartons, one filled with plastic eggs corresponding to the colors of dye and one filled with hard boiled eggs. She put the carton of plastic eggs in front of Shane and asked him to choose an egg. Once he picked a plastic egg he liked, he put it up to his nose to get a good look and eventually placed it in his mom's open hand. As soon as he made his choice, she slid the plastic eggs just out of his reach. She then showed him that she was choosing a plain hard boiled egg and placing it in the color of dye that matched the plastic egg. Once the hard boiled egg was done, she took it out of the dye and had Shane help dry it off with paper towels. They repeated the egg-dying process until he signed "all done." The last step of an Easter egg project is always Shane’s favorite: consumption!  [5/6/16]

Shane places an egg in his mom's hand


Nate is four years old and has dual sensory impairment. Nate’s early intervention hearing support teacher educated his parents about the “right ear advantage”—they should speak into his right ear to maximize his hearing. In order for Nate to engage with family, friends, and teachers, a strategy was developed to help them remember which ear to speak into. They simply put a fun, colorful sticker around the right temple of Nate’s glasses frame. Oftentimes they get stickers that Nate is most excited about like Star Wars or Ninja Turtles. This small step has enabled Nate to more fully participate in activities and routines, learn from his environment, communicate and interact with others, and experience a sense of inclusion and belonging.  [5/20/16]

Side profile showing a rocket ship sticker on Nate's glasses


Jonathan's illness came along, and suddenly his parents found themselves thrust into the world of special needs parenthood. As a mom, wife, and caregiver, Jonathan's mom felt like she was barely keeping her head above water. Everything was so overwhelming, from the daily cares of life to the therapies. As much as they wanted to take some control of the situation by doing everything they could, they needed a hand. Accepting help has allowed her to sleep, and that may seem small, but sleeping has made Jonathan's mom feel human again. She can appreciate the small things in life, like taking time to plan an egg hunt for the kids.  [5/27/16]

Jonathan hunts for eggs with his sister, who has her arm around him.


Savannah loves music; it's all about the beats and bass. We're not sure if she hears the words or cares about hearing them, but we're positive she feels the bass. When we are at church, she loves to shake the tambourine, too. We bought her drums, a keyboard, a guitar, and a violin, and none of them work better for Savannah than her hands. She uses her hands to make a beat and uses everything around her as her instrument. She uses the walls, tables, and closets—they all make different sounds depending on the material. She'll even enlist the people around her to duplicate the beat, and that makes the sound much louder.  [6/10/16]

[Video: Savannah sits on the couch, beating it rhythmically with her hands as she sways from side to side.]


Charlotte has been working on her alphabet over the past few months. She can now recite the whole alphabet and she visually recognizes letters A–R on her letter tiles and flash cards. She is also learning to sign the alphabet! We feel that exposing her to the alphabet several different ways (verbally, visually, and signed) has helped her to learn the letters and commit them to memory quicker.  [1/6/17]

[Video: Charlotte signs the letters of the alphabet while her mom prompts her offscreen.]


Tori is 12 and was born with CHARGE syndrome. She is legally deaf-blind and hates to be out in direct sunlight. Her family loves to go to Disney World, so finding a way for her to keep the sun off was a must. Keeping glasses on her while wearing a hat is difficult, as the hat tends to knock her glasses off. They have a medical stroller with a canopy, but it still doesn't offer enough coverage. This sunshade from Kidpottamus is made of a stretchy fabric with 4 Velcro straps so it will go over the top of any stroller canopy. The large size and ability to attach the straps low on the side rails allows for the shade to cover not just her face but her legs as well, which gives her sun protection. It also helps with wind and rain. She can still see what's going on around her, too.  [1/13/17]

Tori and her family at Animal Kingdom


Every year since Annaleigh was born, she has been given a musical/light-up/dancing stuffed character from her grandmother. This started because she loved music and would focus on lights. She isn't able to squeeze the switch hard enough with her hands sometimes, so she will press with her mouth. The other thing her parents do is give her sensory experiences. The family made homemade pizzas on New Year's Eve, and even though she didn't get to enjoy this by eating, she thoroughly enjoyed playing in the sauce, squishing the dough, tasting the ham and pineapple, and playing with the cheese in her fingers. She did this while her mom cooked!  [1/20/17]

Annaleigh sits at the table with two pizzas in front of her.


Hunter McGowan, 21 years of age from Pennsylvania, is an individual who experiences deaf-blindness due to Usher syndrome. Hunter made a personal choice, knowing the responsibilities it takes, to become a guide dog user. He did extensive research in high school on various guide dog schools across the country. He made the decision to apply at Guiding Eyes for the Blind (GEB) in Yorktown Heights, NY. After a GEB region representative assessed his Orientation and Mobility (O&M) skills and community and home environments, he was accepted into the school. At GEB, he was matched perfectly and received training with his guide dog, Atlas. They are approaching their third year of being a team. Atlas has given Hunter greater independence, companionship, and true loyalty. As a team, they both work hard and play hard together! Atlas has allowed Hunter to navigate and experience a whole new world. This choice may not be for everyone, but for Hunter it was the right choice!  [1/27/17]

[Video: Hunter and Atlas cross a street.]


This video shows Kayla (age 12) signing the ABC's to her little brother Kase (age 2). Kase feels his sister's hands and calls out each letter as she signs C through L. So cute!!!  [9/8/17]


"Michaela was having a lot of problems going to sleep and waking up for school," writes Michaela's mom, Lisa. "She was also refusing to brush her teeth. To help with her mornings, I learned a trick from an article that explained the morning situation something like this…A child is like a bank. You need to put in before you can take out. So I started waking Michaela up 10 minutes earlier than necessary and would snuggle in bed with her, giving her hugs and kisses to wake her up gently. This has worked wonders for her mood and cooperation.

"With regard to the teeth brushing, a simple solution was to install the Disney Magic Timer app on my phone. Now she LOVES brushing her teeth with a different Disney princess each time.

"The nighttime routine was a little tricky. We got her room-darkening shades, a body pillow, and a daily chore chart that we update every night. We also read longer books before bed and let her take a book to bed with her. All this seems to help ease her into bed a little more each night."  [9/15/17]

Michaela at bedtime


Charlotte is learning her alphabet in braille! Her family found this amazing idea from a member of an online group of parents of blind/visually impaired children. The recommendation was to make a large tactile version of a braille cell with a 6-muffin baking pan and 6 tennis balls. Charlotte continues to learn and have fun in her activities that will develop into future skills for success.  [9/22/17]

[Video: Charlotte sits on the couch with a 6-muffin tin on her lap. In response to her mom's prompts, she places tennis balls in the holes to create various letters in braille.]


"We let Abby touch everything—as much as she can," writes Abby's mom, Erin. "Her hands are like her little antennae, exploring and gathering information before she experiences something. We try to find ways to let Abby experience things in a hands-on way.

"We've been on vacation a lot this summer. While on road trips, we unleash a storm of bubbles in the car using a handheld bubble machine. She loves to feel them popping on her face and in her hands."  [9/29/17]

Abby plays with a bubble machine


"Jakob has a rare disorder, Pfeiffer syndrome type 2," writes Jakob's mother, Lisa. "He attends the Western Pennsylvania School for Blind Children where every year they have baseball games for the students. Part of Jakob's syndrome is fusion of the bones which makes it very difficult to grasp a bat. The school has adapted to not only his hearing and visual impairment but also his fusion of bones for the "beeper ball" game. Jakob uses a switch to activate a slingshot to launch the ball. The ball is large and beeps. The bases also are tall and beep so Jakob can actively participate in the game. We are so proud to see Jakob participate in sports and appreciate the WPSBC for continuing to adapt to help Jakob be independent."  [10/6/17]

Jakob sits in a wheelchair with a handmade sign that reads Here We Go Jakob


TENNESSEE

What do memories look like in a child who is deaf-blind? Recently at a DeafBlind conference, Jessie's mom heard the term "memory book." This was a new concept for Jessie's family. So they started with Jessie's favorite thing...food! They began to take pictures as they baked. Then they used snapfish.com (with a coupon) and made Jessie's first memory book. Now they can talk about making brownies, show people how she made brownies, and remember the fun they had making them. It's never too late to start something new!  [2/3/17]

[Video: Jessie looks through a photo book called How to Make Brownies. Her mom talks to her about it from offscreen.]


Signing Time videos are a fun way for the whole family to learn American Sign Language. You can go to www.signingtime.com to get all the details and purchase them new. Also, your local public library will most likely loan them. Jessie loves watching Signing Time. Even with low vision, children will be captivated by the singing and enjoy watching other children sign.  [2/10/17]

Jessie watches videos


This is Silas in his adapted Power Wheels Wild Thing. Silas's mom found this toy with the help of a local physical therapist. The family adapted it so that it is something they all can enjoy! The physical therapist built a “brain” and made it possible for Silas to move and go when he wants to. It teaches him cause and effect, motivates him to move independently, allows him to access his environment, and provides the family a way to play outside together!  [2/17/17]

[Video: Silas drives around the front yard in his Power Wheels. When he stops, his mom encourages him to keep going.]


Austin (age 8) loves Christmas lights, so his Nana bought him some lights to keep up in his room all year long. He really enjoys watching them cycle through the colors. Red is his favorite.  [2/24/17]

[Video: Austin lies in bed and turns his head slowly to watch the light changing from blue to red to green.]


Austin and his loving and supportive family are from Tennessee. Austin is a survivor of shaken baby syndrome and is a true warrior! 

Austin loves to scratch. To keep his attention during a seemingly unrelated activity, his family added a textured placemat to the light box for him to scratch. He now really enjoys playing with his light box, while fulfilling other sensory needs at the same time.  [7/14/17] 

 [Video: Austin scratches his light box, which makes a squeaking noise.]


TEXAS

Once a child is able to stand or cruise while holding onto furniture, start moving all their fun toys up off the ground to motivate them to pull up to stand and play with the objects from a standing position. Increased standing will assist with developing balance, stability, and stronger muscles to prepare your child to get walking. If they sit down with the toy after this, that is great. Their reward will be playing with the toy in a stable position. However, after they are done playing, return the toy to a higher level to promote the movement again.
(This fact brought to you by Beth Foster from Texas Woman's University.)  [11/6/15]

A toddler sits on the floor with some toys

Make it a Community Party! In Houston, TX several families keep in touch through email. Together, they organize outings and use Facebook and email to invite others to join. Nearly every month they find opportunities to do things together. Sometimes the families do something a bit more informal, such as meeting at a restaurant, going to the zoo, visiting the pumpkin patch, or shopping together. Other times they meet up at community events. The community gatherings are for the entire family and have helped to forge strong friendships.  [11/13/15]

The group visits a pumpkin patch

In the spirit of Thanksgiving, sometimes it's our loved ones that are our primary motivator. One Texas Mom shared that getting to know what motivates her child allows her to naturally build in opportunities for growth that present themselves throughout their daily schedule. For example, her child really doesn’t care for toys but LOVES to interact with people. Using the couch to maintain standing position helps foster interaction with her child's favorite provider.  [11/20/15]

A young girl stands facing an adult, who is sitting on the couch supporting the girl around the waist.

Traveling can be a challenge, but with good planning and preparation fun can be had by all! Nalla from Texas really enjoyed her family’s vacation to Puerto Rico this summer. Check out ……  [10/13/17]

Screenshot of Google Slides for 2017 Summer Vacation for Nalla

WISCONSIN

Brushing teeth is a dreaded task in our household for my son who is deafblind. He is very tactile defensive when it comes to his mouth. Brushing his teeth often ends up in tears and frustration on both of our parts. A few months ago we started using a new toothbrush that I purchased on Amazon. The brush has three bristle pads at different angles which are able to clean all surfaces of the teeth at once, saving time and making easier work of necessary dental care. The amount of protest has gone down significantly and our dentist was pleased at our last visit that we are doing a much better job with his oral hygiene—a win for everyone!  [3/4/16]

A boy holds his toothbrush

Liam is very social and loves interacting with people. Liam is learning to identify both people he knows and people he meets by their identifiers. For most people an identifier may be a ring, watch, bracelet, etc. that they always wear. His mom has created identifier bracelets for the adults and kids Liam will come in contact with at Sunday School. These bracelets contain a unique object for each individual as well as their name in print and in braille. His resourceful mom created these from water bottles and objects that were around the house and also in the art room at church. There are many benefits to these identifiers, including increased interaction with peers and educating the community to encourage communication with Liam. They also use these objects in his tangible communication system to help him know which kids are present and when they are speaking.  [3/11/16]

Identifier bracelets

My son is beginning to learn to use a keyboard with the narrator engaged so he can hear what he is typing since he is totally blind. A normal keyboard is very frustrating to him because he knows the alphabet in chronological order but the order on a typical keyboard makes no sense. It was very frustrating to him to press the buttons and not hear the letters in the order which he is used to. After some investigating on the internet, I found that an alphabetical keyboard exists! The look on his face as he used this new keyboard was worth it. He loved that he could press the letters in order, and he has made more progress on this skill since switching keyboards.  [3/18/16]

Liam rests a hand on his keyboard

An iPad is a wonderful tool for a child who is deaf-blind with some functional vision. The “control +” enlarges anything on the internet so your child can see it more easily. Taking pictures or screenshots with the iPad allows you to make things that were previously inaccessible accessible to your child. The ability to zoom in enables one to see what previously could not be seen. The world becomes more accessible for the visually impaired!  [3/25/16]

A boy uses an iPad

Luke recently had the joy of becoming a big brother again. One thing we did to prepare Luke was let him explore things like Clay’s playpen and other baby items so he'd satisfy his curiosity about these new pieces of furniture in his environment before his baby brother was actually using them.  [11/4/16]

Luke explores baby equipment


Logan (9 years old) was always asking us what's going on tomorrow, this weekend, next week, even next month. So I set up different calendars on my iPhone. Among others, I have family, school, and Logan calendars which I have shared with Logan's iPad calendar (be sure to set it as view only and not edit—I learned this part the hard way). So now Logan can look at his calendar whenever he needs to, and he can see what's going on at school, if he has a day off, or if we have family plans. He can even look to see when he has a doctor's appointment, which doctor it's with, and where it's at. He has even helped me on more than one occasion when I started going to the wrong location for an appointment! Happy calendaring!!  [11/11/16]

Logan studies his iPad


Liam is an explorer and loves to explore and find the boundaries of new locations. I believe he makes mental maps of locations so he has a better idea of where he is. One way he maps out places in his head is by counting to remember how many steps are in a location. This video shows Liam exploring the lighthouse in our community.  [11/18/16]


Fall is a beautiful time of year to let your child explore the outdoors. The new sounds of the crisp leaves, the new smells and textures are a sensory delight for our children with combined vision and hearing loss. Liam loves the season of autumn and all the new experiences it brings!  [11/25/16]

Liam walks with his cane on a road covered in fallen leaves


MISCELLANEOUS

The power of the love of a mom can never be underestimated—especially in the life of a child who experiences combined vision and hearing loss. In this new year, be grateful for the presence of the ones you love in your life and the impact that your consistency can have on the development of your child.  [1/8/16]

A mother holds her son on her hip
For a fun summer activity, check out the free lifetime pass that is available to U.S. citizens who have been medically determined to have a permanent disability. This pass provides access to more than 2,000 recreation sites managed by five Federal agencies. For more information, visit America the Beautiful Passes on the National Park Service website.  [6/17/16]

Have a vacation planned yet for the summer? Looking for accessible places to take your child with the opportunity to engage fully? Check out this list of 32 Vacation Destinations for Individuals with Special Needs.  [6/24/16]

Please watch and celebrate the learning that occurred this past summer for families across the nation at the 2016 NFADB Symposium!  [10/7/16]

[Video: A montage of photos from the symposium. The song "Exploring My World" by The Synth Freq plays in the background.]


The start of a new school year can be stressful for children—especially one with a combined vision and hearing loss. The sudden change in routines, environment, and people can be very overwhelming. An easy strategy to help minimize stress could be making a visual or tactile calendar to allow your child to see/feel how many days are left before school begins. To learn more about calendar systems, visit this article from the Paths to Literacy site.  [10/14/16]


Upon return to school, maintaining an understanding of what a weekday versus weekend day is can be really confusing. A few tips to help with this would be to: review the upcoming day as part of the bedtime routine, have a schedule displayed where your child can check to see what’s next, and have a distinct wake-up ritual for days that are/are not school days.  [10/21/16]

A girl sits in a wheelchair while a small dog stands on her lap


Sometimes people want to use a tactile symbol to let their child know it’s time to get on the bus. Don’t make the mistake of buying a miniature bus! Instead, provide them with a symbol that represents something that they interact with on the bus—like a picture of the bus driver, a piece of the seat belt, etc. For most children with combined vision and hearing loss, this will make much more sense!  [10/28/16]


Needing some cool ideas for holiday gifts? This link provides story box ideas for holiday tales, real object advent calendars, braille apple-cinnamon ornaments, and much more! Ten Accessible Holiday Activities and Gift Guides for Children Who Are Blind.  [12/1/16]


Here is another great holiday gift idea list for children with combined vision and hearing loss. Check it out! Toys and Gift Ideas for Children Who Are Blind or Visually Impaired.  [12/9/16]


Video Alert! Take 13 minutes to watch a story about a young man with multiple disabilities, his family’s vision to help him succeed, and a collaboration with his sister to create a short movie where he played the lead role. Check out Jenna Kanell’s TEDx Talk: "A Bee Showed Me That Limits Are Lies." She explores the question: What would we be capable of if no one told us we had limitations?  [3/31/17]

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