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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!

This page is under construction. Older family fun facts are still being loaded. 

Check back soon!

Arizona

February 22, 2019

Meet Kim Lauger, the CHARGE Syndrome Foundation’s Family Liaison for Arizona. It looks like her family has lots of fun spending time together all about town. If you are wondering if you have a CHARGE Liaison in your state, go here: https://www.chargesyndrome.org/for-families/get-support/. They would love to connect with you! 

April 13, 2018

Mayzie's celebrated her 5th birthday with her classmates (who all experience vision impairment and several experience DeafBlindness) by bringing a company to her class that allows the child to personalize a stuffed animal. They chose which animal they wanted, worked the machine to put the stuffing inside, and chose either a scent or sound to go inside. It was so much fun and we loved seeing each child's personality come through in their choices!

Mayzie wearing a birthday crown stuffing a bear at Build-a-Bear.

April 29, 2016

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!  

Soliz and Camila walking with their walkers in a 5k race.

April 22, 2016

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!  

Camilla swims in the pool with her grandma.

April 15, 2016

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!  

Soliz and Camilla sit on the ground with their dog

April 8, 2016

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!

Arkansas

September 18, 2020

Seven-year-old Allen Shimkus enjoys life in his community and school. In Lakeview, Arkansas, parents Julie and Aaron Shimkus share what he loves – using all his senses! He enjoys playing the drums, swinging with an adapted swing in the schoolyard, bowling with his dad and sister, being in the park helping his family pick up trash, and most importantly loving girls.

Allen playing drums, swinging and bowling with dad and sister.

February 22, 2019 

Meet Casey Adams, the CHARGE Syndrome Foundation’s Family Liaison for Arkansas. Looks like she and her family have lots of fun spending time together in the great outdoors. Maybe just not right now in the cold of the winter! If you are wondering if you have a CHARGE Liaison in your state, go here: https://www.chargesyndrome.org/for-families/get-support/. They would love to connect with you!

California

April 24, 2020

This is Logan, our 14 year old, adopted son. He is part of our seven person family living in quarantine, to save lives. He is our superhero! Logan’s stander was transported to our home, since school has been closed. No therapies from outside the home are happening during this time. Logan is just getting back into his stander after surgery and then a year long recovery period following a pressure sore on his heel. He is very alert and vocal when in his stander. Here he is participating in making fish and fries for supper with his dad. He nods yes and no and is typically tactilely defensive, but loves the frozen fries on his tray and placing his hands on them.

Logan in his stander alert and happy.

April 17, 2020

We are the Criswell Family in the SF area. Tyler loves so many things it’s hard to pick. He loves to travel and plan trips, go on walks with his K9 buddy, play baseball with his special needs team, sleeping with his sheets that have the world on them. He loves being with his brothers. He loves technology and his very favorite thing is relaxing in the hot tub with his family.

A collage of Tyler walking, holding a chick and smiling.

April 28, 2017

Valerie, who is deaf-blind, has fun exploring outdoors with her family.

A collage of images of valerie doing outdoor activities with her family, including horseback riding, swimming, playing at the park.

April 21, 2017

Sonia Hernandez talks about what her daughter likes to do for fun. (Turn on the captions for the English translation.)

April 14, 2017

Sonia Hernandez talks about why her daughter was born deaf-blind. (Turn on the captions for the English translation.)

April 7, 2017

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

December 30, 2016

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!  

December 23, 2016 

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. 

December 16, 2016

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.

Florida

May 22, 2020 

During the coronavirus pandemic, we’ve remained entertained through light. There’s so many ways to play with light. From nestling with fiber optics to exploring different shapes with the light panel, and most fun of all, a glowing bubble wand (only to coat the floor with soapy solution when used in excess), but hey, it only contributes to all of the extra cleaning we are to do during these uncertain times! Nonetheless, creating fun sensory experiences after the sun sets was fun even before spending a lot more time at home.

A girl plays with light strings and toys.

June 28, 2019 

We are the Eder family. Berniece Ann is 11 years old. She is diagnosed with Pyruvate Dehydrogenase Deficiency, including, DeafBlindness. These pictures were taken at the Annual Disability conference in Orlando FL. 

The Eder family at the conference.

June 21, 2019

The Florida parent state liaison for CHARGE Syndrome arranged a meet and greet for families that attended The Annual Family Café, the nation's largest cross-disability event in Florida. These pictures show the love and connection these families experienced!

June 14, 2019

This is Kody, he’s 21. He was officially a senior this year. He is DeafBlind. He attended his high school awards ceremony and received these two awards. He is with his intervener who works with him at school. Since learning tactile sign language his world has changed. He is able to request his wants and needs. Kody of course, has mastered what he wants to eat and drink and go home (while at school). Kody has one more year of school and we are hoping he will continue to make progress. 

June 7, 2019

Jaxson is 2 and a half years old and was diagnosed with CHARGE Syndrome after birth. Jaxson also loves going to the beach! He plays in the sand for hours, digging and burying his feet and hands. Jaxson has trach and so is not able to go swimming but that doesn’t stop him from enjoying the water, he loves to put his feet in the water and kick and splash around. On weekends when we aren’t able to take a trip to the beach we fill up Jaxson’s outdoor sand table and the kiddie pool and bring the beach to our backyard. Jaxson loves to explore his world and any opportunity he has to touch, feel, taste, move and explore the world around him he takes it.

March 29, 2019

Gabriel fully participates in family & community life. He has been diagnosed with Larsen Syndrome and Autism. He loved Disneyworld and spending time at a local farm. Their family motto is life is too precious and too short not to make the most of everyday.

March 22, 2019

Payton is 5 years old. When she was born her family learned that she had Trisomy 18 and was told she would not likely make it one week. Shortly after she was born she failed her first hearing screening beginning the hearing loss journey. Finding the right hearing aid for her that doesn’t overload her sensory issues has been a ongoing challenge. We are currently trialing the new AdHear device. Despite these hurdles Payton loves to have fun & lives an incredibly full life without limitations! Payton enjoys going to school with her friends, the movies, traveling (she has visited 8 different states, seen the total solar eclipse, the mountains, numerous beaches, museums, zoos, aquariums and theme parks). She loves digging her feet in the sand at the beach. Payton was also promoted to Big Sister in August 2018. She is the best big sister and enjoys playing with her new baby sister, Bailey. Bailey is usually very sad when Payton is at school and refuses to play on the floor unless Payton is with her. They truly have a unique special bond!

Georgia

July 7, 2017

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." 

Ivey sitting in the car with sensory toys/items in front of her.

Illinois

November 9, 2018

One morning Dominic was getting on the bus & his bus driver turns & says you are really lucky to have him. It was one of those moments when I stopped smiled & said 'Yes I Am!' I feel lucky to have him but it’s even better when someone else notices!

Dominic with his mom.

Iowa

August 14, 2020

"Miles, 5, giggled, smiled and moved with excitement as he was wheeled down the rows of sunflowers in a rural part of his state. He loved the soft tickling feeling of the leaves and weeds on his feet and legs and the rough movement in his wheelchair of the bumpy, rocky terrain. He went on a cool breezy evening with his family. It was a very sensory rich experience with the breeze in his hair and skin and the drive in the car on the gravel road."

Miles and Liam in a sunflower field.

July 17, 2020

The Iowa Deafblind Project held an event (prior to COVID-19) and invited their families to an accessible private screening of the movie Doolittle. It was one young boys first time going to the movies and he was very excited!

A theater of individuals watching an accessible movie, and a family excited to watch the movie.

Kansas

August 7, 2020

Jackie enjoys swimming in the pool and is testing out new arm floats to help increase her confidence.

Jackie swimming with arm floats next to her mom.

July 31, 2020

Jackie enjoys helping in the kitchen. In this photo she is mixing dry ingredients with her hands which is a fun tactile experience for her.

Jackie mixing dry ingredients in a bowl with her hands.

Kentucky

Massachusetts

Michigan

New Jersey

New York

Pennsylvania

July 3, 2020

We celebrate with this family from Pennsylvania as their son takes his first steps at the age of 14. His mother reflected: " I will forever love this picture of my son taking his very first steps at almost 15 years old! All of the hard work, sweat, sitting alone at doctors' offices, emergency rooms, operating waiting rooms, ICU, outside of resuscitation rooms, feeling alone, and feeling like no one understands, didn't even matter today. What mattered is that God allowed my son's brain and body to work together at the same time in order for him to do this; even if it was just for 15 minutes!"
The families of the deaf-blind community want you to know- You are not alone. We join in with your pride and joy every step of the way!
 

A boy walking with a physical therapist, and him smiling.

March 6, 2020

Since playing tunes at the age of 3, Taylor continues to compose her own pieces, play several instruments and conduct large ensembles.  As a college Freshman, Taylor is working on making music a lifetime pursuit with no limits in her way!

Taylor conducting a music ensemble.

February 28, 2020

Thanks to our participation at the PA Deaf-Blind Family Learning Conference last year, our family learned about the Yellow Dot Program administered through the Pennsylvania Department of Transportation (PennDOT). The yellow dot sticker alerts first responders that there is important medical information in the glove box. The first picture shows our daughter, Hannah, who is deaf-blind, and the placement of the yellow dot on our car. The second photo shows the envelope containing the medical information form to be placed in the glove compartment. This gives us a sense of relief to know that this information is readily available in an emergency. Perhaps other states have something similar to this program. The Hindmarch Family from Pennsylvania.

February 21, 2020 

FUN, EXERCISE, and SOCIAL EXPERIENCES = RECREATION!
Families with individuals with deaf-blindness enjoy recreation activities as we all do!  A true challenge exists for those who are deaf-blind to include recreation in their lives.  Families-Individuals-Educators-Professionals-and Friends should encourage the benefits of recreational activities.  In Pennsylvania, the family organization Pennsylvania Partnership for Deafblind (PPDB) sponsored a Sensory Day at an indoor trampoline park.  Families, individuals, board members of PPDB, staff from the state Pennsylvania Deaf-Blind Project, and friends joined for a great day of recreation.

 

Families posing at a trampoline park.

South Carolina

South Dakota

Tennessee

Texas

March 13, 2020

Check out Lexi taking two Texas Tonix orders to the Salado, Texas Post Office. She helps pack them too! Great work, Lexi!

Lexi holding mail packages at the post office.

Wisconsin

October 16, 2020 

Virtual learning has been a challenge for everyone but we have found a way to  make it work for us. Liam loves to listen to the presentation and then we pause the video and allow him to Braille what he has heard. It is a way to get him to focus on what he is hearing and also to work on his Braille skills. 

Liam signing with is mom, next to his laptop and braille machine.

May 15, 2020

Staying in has its benefits - more opportunity to spend time with family! Liam loves to play Braille Uno with his dad and brother. A chance to practice Braille skills and game strategy but more importantly time to bond with his favorite people while passing the time in quarantine!

A family plays a braille uno card game.

May 8, 2020

When you are cooped up all day with social distancing you have to get creative. We were able to use our son Luke's lift to set up a swing for his younger brother Clay. Medical equipment getting a fun use..win win for everyone!

A swing is attached to a lift system and a boy sits inside the swing.

May 1, 2020

While we are all practicing our social distancing skills, we still can do things to help others. Our kids set up a free library. They have sorted through the books that they have loved and are ready for other kiddos to love them! So awesome to be thinking of others during this difficult time!

November 25, 2016

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! 

Liam walking with a cane next to a pile of leaves.

Miscellaneous