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.
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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!
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!
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!
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!
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!
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!
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.
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.
April 28, 2017
Valerie, who is deaf-blind, has fun exploring outdoors with her family.
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.
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.
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.
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!
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."
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!
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!
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.
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!
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!
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!
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!
April 10, 2020
Free HKNC E-Learning Opportunities for Families & Support Providers
HKNC is offering access to their online courses free of charge to families and service providers until May 31. Contact your HKNC regional representative or email PLD@hknc.org if you are interested in any of the classes.
April 3, 2020
A new key topic for families has been posted on self-care during the COVID-19 pandemic.
March 27, 2020
We have pulled together some resources on activities you can do at home with your children who are deaf-blind. We hope these are helpful in these times of huge transition.