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This page was last updated on Sep 18, 2017 at 11:35 am
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Facebook: #DBFamilyFunFacts "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 mins 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 seem to help ease her into bed a little more each night."
Twitter: #DBFamilyFunFacts A child is like a bank. Deposit before withdrawal: Updating chore charts, storybook bedtime, Disney toothbrush timer app.
Images posted (screenshot from Facebook of the three images):
Facebook: #DBFamilyFunFacts This YouTube 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!!! #literacy #signingABCs
Twitter: #DBFamilyFunFacts Kase feels his sister's hands and calls out each letter as she signs C through L. So cute!!!
Media included [Video: 11 seconds]: Kase Signing
Facebook: #DBFamilyFunFacts 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!
[Video: A young girl, Hannah, is in a swimming pool--she's wearing goggles and a life jacket with arm floaties. She holds her breath and ducks her head under water for a few seconds at a time. 0:22]
Video: Hannah swims
Twitter: #DBFamilyFunFacts Hannah has been doing water therapy for years and never felt brave enough to put her head under water until the other day!
Photo: [Description: A young girl, Hannah, is in a swimming pool--she's wearing goggles and a life jacket with arm floaties.]
Facebook: #DBFamilyFunFacts 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!!!!
Twitter: #DBFamilyFunFacts With determination and support from therapists, Hannah no longer has a feeding tube. She clearly savors tasting food! YUM!
[Image: A young girl, Hannah, is holding a slice of watermelon. She's smiling and has red juice stains around her mouth.]
Facebook: #DBFamilyFunFacts "When it's too hot to go out...Jake has to take video," said 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."
Watch Jake's "My favorite trains!" YouTube video: [Description: Jake shows a variety of electric trains. A model electric train is running on an oval track on a dining room table with the captions "Watch it Go". Jake shows an image of a train with the caption "I like study picture". And he shows that the train runs on six batteries. Energetic electronic music with a strong beat provides the audio track.] Jake's Favorite Trains YouTube video
Twitter: #DBFamilyFunFacts With help, Jake uses an app on his iPad to edit a finished video and posts to YouTube to rewatch: Jake's Favorite Trains YouTube video
Facebook: #DBFamilyFunFacts 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. [Video: Jake and a young man ride a two-person tricycle together down a residential street. Birds chirp and a car goes by in the opposite direction. No speech. 13 seconds.]
Twitter: #DBFamilyFunFacts Video: Jake and a young man ride a two-person tricycle together down a street. Exercise and O&M activity all in one!
Facebook: #DBFamilyFunFacts Jake loves to take apart and rebuild electronic things and then make presentations about them. Here's one he did [link to Google Slides]: Link to Jake's Google Slides Presentation on Old TVs
Twitter: #DBFamilyFunFacts Jake loves to take apart and rebuild electronic things and then make presentations about them. Link to Jake's Google Slides Presentation on Old TVs
July 28, 2017
Facebook: #DBFamilyFunFacts "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." [Image: A young man, Jake, is filling balloons with his father.]
Twitter: #DBFamilyFunFacts "Sometimes we volunteer to do something fun like filling balloons for a special event. Balloons are always fun!!!"
July 21, 2017
Facebook: #DBFamilyFunFacts 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!!! [Mamba is a rollercoaster in Kansas City, MO.] (2 photos included)
Twitter: #DBFamilyFunFacts Does your child like amusement parks? Jake loves the arcades and gut-wrenching roller coasters! Go MAMBA!!! [A ride in KC] (2 photos included)
July 14, 2017
#DBFamilyFunFacts 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.
[Video description: A boy sits in front of a light box with a spotted color overlay. He scratches the light box surface which sounds squeaky. When Austin begins to stop scratching, a woman, who is off-screen, says, "Scratch. Good job, Austin."] (21 seconds) (1 video included)
Twitter: Not posted to Twitter.
July 7, 2017
Facebook post: #DBFamilyFunFacts 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." (4 photos included)
Twitter post: #DBFamilyFunFacts See how one family created a “little room” in their van for the many hours spent traveling across town and on long trips. (4 photos included)
June 30, 2017
Facebook post: #DBFamilyFunFacts 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. (2 photos included)
Twitter post: #DBFamilyFunFacts Exercise is a valuable part of mental and physical health. For Jake, going to the gym is recreational, social, and fun. (2 photos included)
June 23, 2017
Facebook post: #DBFamilyFunFacts 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! #summerfunforkids #barefootandhappy" (2 photos included)
Twitter post: #DBFamilyFunFacts School's out! As you can see, Devin is celebrating and can't wait for what summer brings! #deafblind #barefootandhappy (2 photos included)
June 16, 2017
Facebook post: #DBFamilyFunFacts Friends come in small and big packages. Remembering to get down on the child's level is critical for mutual interaction and communication. [Image: A young man kneels down while a small boy, Devin, climbs on his back. They are both smiling.]" (1 photo included)
Twitter post: #DBFamilyFunFacts Remembering to get down on the child's level is critical for mutual interaction and communication. #deafblind #funtimes pic.twitter.com/4rYxhim5MW
June 9, 2017
Facebook post: #DBFamilyFunFacts This is what happens when Mom takes too long in the morning. Sometimes you've just got to take matters into your own hands! (2 photos included)
Twitter post: #DBFamilyFunFacts This is what happens when Mom takes too long in the morning. Sometimes you've got to take matters into your own hands! pic.twitter.com/0zvbYypYA5 (2 photos included)
June 2 -
Facebook post: #DBFamilyFunFacts 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. [Image: A young boy with a big smile clasps his hands in front of his face.] (One photo included)
Twitter post: Here are some tips for teaching braille to students with CP or decreased tactile sensitivity. http://www.pathstoliteracy.org/blog/teaching-braille-mechanics-students-cp-or-decreased-tactile-sensitivity (One photo included)
May 26 -
Facebook post: #DBFamilyFunFacts "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!"
Twitter post: #DBFamilyFunFacts Devin loves anything sweet, but especially ice cream. Nice warm days are great for getting sticky and having fun! pic.twitter.com/Vw5bQL3iDx
May 19 -
Facebook post: #DBFamilyFunFacts Jonathon 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. Jonathon'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, Jonathon now enjoys PJ storytime with other preschoolers. #USHfam
Twitter post: #DBFamilyFunFacts Jonathan and his mom look at a picture book as a librarian reads aloud from the same. PJ storytime with FM system. #USHfam pic.twitter.com/MQ4N5pH7Vl
May 12 -
Facebook post: #DBFamilyFunFacts 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.” #deafblind #summercamp #ASL [Image: A young girl stands in her walker smiling into the camera. Her face is painted with animal-like features.]
Twitter post: #DBFamilyFunFacts At "ASL Family Camp...all of our children enjoy barrier-free communication...that keep us coming back every year.” #ASL pic.twitter.com/CN1GLRrMz7
May 5 -
Facebook post: #DBFamilyFunFacts 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 non-profit 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. #deafblind #CHARGE
Twitter post: #DBFamilyFunFacts Jacob is truly a member of his local community. His non-profit Jacob Can donates money to @chargesyndrome. pic.twitter.com/BddLdym6wS
April 28 -
Facebook post: #DBFamilyFunFacts Valerie, who is deaf-blind, has fun exploring outdoors with her family.
Twitter post: #DBFamilyFunFacts Valerie, who is deaf-blind, has fun exploring outdoors with her family. Family photos: beach, horses, playgrounds, pools.
April 21 -
Facebook post: #DBFamilyFunFacts Sonia Hernandez talks about what her daughter, who is deaf-blind, likes to do for fun. (Turn on the captions for the English translation.) #deafblind #Spanish #mothersanddaughters #recreation
Twitter post: #DBFamilyFunFacts Sonia Hernandez talks about what her daughter, who is deaf-blind, likes to do for fun. https://youtu.be/QKSXE-_Bslo #deafblind
April 14 -
Facebook post: #DBFamilyFunFacts In this video, Sonia Hernandez talks about why her daughter was born deaf-blind. #deafblind #congenitalrubellasyndrome #Spanish #mothersanddaughters
Twitter post: #DBFamilyFunFacts Sonia H talks more about her daughter's deaf-blindness. #congenitalrubellasyndrome #Spanish
April 7 -
Facebook post: #DBFamilyFunFacts In this video, Sonia Hernandez introduces her daughter who is deaf-blind. #deafblind #cerebralpalsy #Spanish #mothersanddaughters
Twitter post: #DBFamilyFunFacts Family video! Sonja Hernandez introduces her daughter who is deaf-blind. #deafblind 312 impressions
March 31 -
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? Visit the TEDx Talk on YouTube by Jenna Kanell.
#deafblind #siblings #families #disability #TEDx
March 24 -
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.
[Photo description: The boys are at a ski lift with other people milling about on skis. The boys are standing on skis and holding ski poles. They are wearing tinted/reflective goggles that are resting on their foreheads, ski gloves and ski pants, and sweatshirts.]
#deafblind #sports #PT #skiing #families #brothers #DBFamilyFunFacts
March 2017March 10 - 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 also continue his training to meet the boys’ unique needs as their vision changes. The unconditional love he provides the boys has been the best benefit of all!
March 3 - 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 @reb_alexander. Ava is the inspiration behind “Ava’s Voice”, a local non-profit 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.
Here’s how to participate:
- Make a video to your favorite Usher song
- Tag @usher
- Hashtag #usher4ushersyndrome #avasvoice
- Tag three friend and include these instructions in your post
Good luck Ava and all of our NCDB Usher families!
The video link is in the March 7 post on Ava's Voice Facebook Page: https://www.facebook.com/avasvoice.org/?hc_ref=PAGES_TIMELINE&fref=nf
(Text for video) SNEAK PEEK! Wait till you see this crowd go wild in an attempt to get Usher 's attention! @reb_alexander is calling out to all Usher families to #usher4ushersyndrome in hopes that Usher will do a charity concert to raise funds for a cure for Usher Syndrome. We all know Ava is a fan of Usher and his signature moves. Stay tuned for the full video and see our #avasvoice family get wild! Usher Syndrome Coalition #ushfam for our sneak peek we challenge Ava's favorite and most recent dance partners @j_dm88 @ed_abdelmalak @jvbullis82 Ellen DeGeneres
February 24 - 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.
Video Description: A young boy lies reclined in a bed and turns his head slowly to watch the light changing from shades of blue to red to green in his room. The light source is a string of Christmas lights against a wall close to his bed. https://www.youtube.com/watch?v=dDOILWe_dtM&feature=youtu.be
February 17th - 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 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!
Video Description: Young Silas is driving around the front yard in his power wheels. He pauses occasionally and is encouraged by his mom to keep going. https://www.youtube.com/watch?v=qxnYNnhm44Q&feature=youtu.be
February 10th -"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.
February 3rd - 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! https://www.youtube.com/watch?v=58thf3P4rW4&feature=youtu.be
January 27th - 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 Dog Guide Schools for the Blind 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, community and home environments, he was accepted into the school. At the GEB School, he was matched perfectly and received training with his guide dog for the blind “ 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! https://www.youtube.com/watch?v=AqXE2o7Rllw&feature=youtu.be
January 20th - 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, and tasting the ham, pineapple, and playing with the cheese in her fingers. She did this while her mom cooked!
January 13th - 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 enthusiasts, so finding a way for her to keep the sun off of her 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 as well.
January 6th - 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 too! We feel that by exposing her to the alphabet several different ways (verbally, visually and signed) it has helped her to learn the letters and commit them to memory quicker. Video Description: A mother is reciting the alphabet while her daughter signs the letters. https://www.youtube.com/watch?v=bFfpDGoGdYw&feature=youtu.be
December 30th - 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!https://www.youtube.com/watch?v=vNif2kn2aL4&feature=youtu.be
December 23rd - 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. https://www.youtube.com/watch?v=PhuSEHvFpHU
December 16th - 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 love to hang out and watch soccer together & you can tell Norman loved it. Video Description: Norman sits with his dad while watching sports on the TV. https://www.youtube.com/watch?v=N6QLs0aKDBw
December 9th - Below is another great holiday gift idea list for children with combined vision and hearing loss. Check it out! http://www.familyconnect.org/info/after-the-diagnosis/helpful-products/gift-ideas-for-parents-of-children-who-are-blind-or-visually-impaired/125
December 1st - Needing some cool ideas holiday gifts? The link below provides story box ideas for holiday tales, real object advent calendars, braille apple cinnamon ornaments and much more! http://www.perkins.org/stories/blog/ten-accessible-holiday-activities-and-gift-guides-for-children-who-are-blind
November 25 - 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 losses. Liam loves the season of autumn and all the new experiences it brings!
November 18th - 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. Here is Liam exploring the lighthouse in our community. http://www.youtube.com/watch?v=02b8-3QoAfY
November 11th - Logan (9yrs 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 a 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 or if he had a day off. If we have family plans. He can even look to see when he has a doctor appointment, which doctor it's with, and where it's at. He has even helped me on more than one occasion when I started to going to the wrong location for an appointment! Happy calendaring!!
November 4th - 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 of these new pieces of furniture in his environment before his baby brother was actually using these things.
October 28th - 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!
October 21st - Upon return to school, maintaining an understanding of what a week day 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, having a schedule displayed where your child can check to see what’s next; and having a distinct wake up ritual for days that are/ are not school days.
October 14th - 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 click the link below... http://www.pathstoliteracy.org/blog/calendar-boxes-and-schedule-systems-literacy-tools
October 7th - Please watch and celebrate the learning that occurred this past summer for families across the nation at the 2016 NFADB Symposium! https://youtu.be/4j_D92WTLp0
September 30th - 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).
September 23rd - 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.)
September 16th - 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)
September 9th - 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)
September 2nd - 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!
August 25th - Take me out to the ballgame! Make sure to have your child be a part of all of the family activities even when it may require a little more time and effort. Little brother’s enjoy having their bigger brothers there to cheer them on!
August 19th - 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!!!
August 12th - 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.
July 22nd - 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?
July 15th - 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.
July 8th - 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!
July 1st - 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.
June 24th - Have a vacation planned yet for the summer? Looking for accessible places to take your child with the opportunity to engage fully? Below are lists of great vacation destinations for families with individuals with special needs. http://www.friendshipcircle.org/blog/2012/06/06/32-vacation-destinations-for-individuals-with-disabilities-or-special-needs/
June 17th - For a fun summer activity, check out the free, lifetime pass that is available to US citizens that 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. Click the link below for more information...https://www.nps.gov/planyourvisit/passes.htm
June 10th - 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. Her parents bought her drums, a keyboard, guitar, and 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, & closets etc.--they all make different sounds depending on that material. She'll even enlist the people around her to duplicate the beat and that makes the sound much louder. https://youtu.be/YsRSbXi2h6c
June 3rd - 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!
May 27th - Jonathan's illness came along and suddenly, his parents found themselves thrust into the world of special needs parenthood. As a mom, wife, 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.
May 20th - Nate is four years old and has dual sensory impairment. Nate’s Early Intervention hearing support teacher educated his parents about the importance of the “right ear advantage,” meaning speaking 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 in to for him to hear better. They simply put a fun, colorful sticker around the right temple of Nate’s glasses frame. Often times, 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 foster a sense of inclusion and belonging.
May 6th - 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 color Easter eggs. 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 to put it up to his nose to get a good look and he eventually placed it in his moms open hand. As soon as he made his choice she then slide the plastic eggs just out of his reach. She then showed him that she was choosing a plain hard boiled and that she placed it in the color of dye that matches the plastic egg. Once the hardboiled egg was done, she would take it out of the dye and have Shane help dry it off with paper towels. We repeat the egg dying process until he signs ‘all done’. The last step of Easter egg project is always Shane’s favorite: consumption!
April 29th - A family in Arizona recently ran a 5k. When we 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 22nd - Camila has a very special bond with her Grandma Jojo. They swim together whenever they can. In this particular video 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 15th - 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 8th - 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!
April 1st - 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.
March 25th - 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 it can be made the proper size for your child to see the image. Taking pictures or screenshots with the iPad allows you 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!
March 18th - 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 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.
March 11th - 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.
March 4th - 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!
February 26th - 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 roommate a few time a week!
February 19th - 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! https://youtu.be/Z67-AYzH-MI
February 12 - 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 across the board with a variety of contexts. https://www.youtube.com/watch?v=wCSJ9OUtKFs
February 5th - 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 a "Adventure Journal." It is a regular notebook with her picture on the top page and a couple 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!
January 29th - 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!
January 22nd - 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!
January 15th - 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 & 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.
January 8th - 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.
December 25th - 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, has a fuzzy white beard and white gloves. Not so sure Devin liked the experience, but at least now he has a greater understanding for the meaning of this thing called "Santa".
December 18 - Looking for creative ways to keep your child engaged at the holidays? Here are some great ideas provided by Michelle and Hannah Miller from Mississippi for children who experience Cortical Visual Impairment.
November - These facts were developed by Edegnie Bellah, the Family Specialist in Texas
November 20th - 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.
November 13th - 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.
November 6th - Promoting Movement - Once a child is able to stand or cruise while holding onto furniture, start moving all their fun toys up off the ground to promote and 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)
October - These facts were developed by Carly Fredericks, a Family Specialist in New Jersey
October 30th post: 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 apart of a team, interact with peers, and get some fresh air and exercise.
October 23th:- 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 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!
October 16th post: 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 the her friends to be a part of her life while being aware of why modifications are being made in the classroom.
October 9th - 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 make them easily accessible. This promotes independence and reduces frustration for everyone! And don’t forget the double sided Velcro so everything stays in place!
October 2nd - 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.
September - These faces were developed by a Kansas Parent
September 25th - 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 in Kansas 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 the needed predictability for what lies ahead.
September 18th - 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.
September 11th - 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?
September 4th - This clip board 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.