Monday, September 26, 2016

Different Signed Languages; Same Passion to Connect

Note: It is wonderful how the signed languages are different between countries as the spoken languages also are.  Fascinating also is that even though England and Australia are English-speaking countries, their signed languages are totally different.  There is British Sign Language (BSL) and Auslan!  I had to resort to lip reading when conversing with Deaf Australians and luckily they knew the ASL alphabet and spelled out English words. -Heather "Hex" Withrow
19 year-old Heather sits on the grass with a beautiful red Russian church with spires rising out of the background. The setting is remote, grassy and there are trees behind the church. This was on the grounds of the spring that feeds into the Volga River.  The Volga is Russia's largest and longest river and the "life of Russia", the beginning of history in Russia.
Photo taken in 1995.

My first time traveling outside of North America was a memorable one, it was with an educational group exchange visit during summer 1995 in the Moscow, Russia area by MIUSA (Mobility International USA). In our group, there were three Deaf students total, a blind boy, two used wheelchairs, one had epilepsy, and the others were typical students. I was newly 19 years old and had just finished my freshman year at Gallaudet U. I’ll talk about communication here, figuratively a little square inch out of  a bigger painting of experience that this trip was.  It was during this trip I had a handful of opportunities to gesture and converse with Deaf Russian citizens. In my trip journal, I wrote in such a naive and upbeat 19 year-old chatter but what was obvious then and still is something I enjoy now is that I love the challenge of communicating with other people without an initial mutual language between us.  
The American delegation, student with or without various disabilities, dressed up as land animals, improvised our costumes from what we could find in nature.  The Russians were the sea creatures (not pictured) and were a hilarious sight! I was an ape, and am crouching in the front of the group in this picture at our campsite along the Volga River.
 Photo taken August 1995.

We found a lot of deaf people in Moscow’s Red Square, many were selling souvenirs, and we met a guy in his 40’s whose name I know I got wrong but we’ll call him “Tis”.  It was not easy but a rewarding challenge working with gestures. We started to pick out each other’s signs so that it became a mixture of gestures, ASL and Russian sign language!  At one point we had our ASL-spoken English interpreter, Russian-English interpreter, Tis, and us Deaf American students in a circle along the side of the Red Square. Our English-speaking group leaders wanted to pass a message along to Tis, the Russian-English interpreter was no use since the Russian she knew was spoken and not signed.  The message was spoken in English, translated to ASL to us and we gestured and signed to Tis; and his response went back through us. Fascinating!
Heather and "Tis" in the Red Square. St. Basil's Cathedral is in the background.
Photo taken August 1995.

Another ASL and Russian sign language crash experience was when everyone in our exchange group was sent home with different host families for just one night, one of the Deaf students and I were sent home with a Deaf couple who also had a Deaf roommate. We had a hearty meal in their humble kitchen, which of course, had potatoes peeled with the new veggie peeler I gifted the mom and bottles of Coca-Cola purchased earlier at a street kiosk.  We stayed up most of the night gesturing, picking up each other’s signs and looking up the Russian word for that English word and vice versa.  We were bummed this was just one night, still it was yet another profound experience during my Russia trip.

Three American students, Heather, Tracie and Edo, and two Russian men; all are Deaf.
The guys were much friendlier than they appear in this photo and were the ones Edo and I chatted with all night with Peter's wife. Peter is in the leather jacket.
I'm on the far left. Photo taken August 1995.


Over the years, I went on to participate in the Deaflympic Games, where the world, with its many different signed languages, was brought together in one place.  I’ve gone on to visit and gesture with deaf citizens in other countries during my travels. Meetings with Deaf people were pre-arranged but often we just somehow find Deaf people by luck.  It helps when we sign amongst each other making us visible and then signs of our sighting travel fast through the Deaf community in the area. The first of all the communication barrier ascents, profound due to it’s newness to me, was in Russia where something awoke within me; I felt I was born again.  The fire within me liked very much the oxygen that I was in the midst of.
"Fish-eye" sketch in blue ink of a cozy bath house from my Russia 1995 journal.
August 1995.

Saturday, September 24, 2016

Touch That Cake!

Orion enjoys a chocolate ball from somewhere in his name.
Orion had one of the most unique and DeafBlind-intriguing birthday cakes ever to celebrate his 6th birthday!  This special cake was created by Tina and Amy with that. specialty cake company, located in Austin, Texas.  It had beautiful marbleized blue and purple fondant, Orion’s name was spelled in braille with white chocolate balls, and you can see/feel a few candied constellations along the cake’s side. Inside was the chocolatiest triple-chocolate I’ve ever tasted, so yummy that there were none left over after the party.


No mistaking whose cake this is, it is Orion's.
Image description: A flat, circle blue marbleized fondant covered cake has "o r i o n" spelled in braille chocolate balls on top.  Constellations are visible on the sides- Orion and the Big Dipper. Yellow balls are strung around the entire bottom circumference of the cake.
Amy and I talked about doing a special tactile and interactive cake for Orion’s 6th birthday, a great idea right from the start! I’ve always included candles for his birthday even though it was so awkward, perhaps a tactile oxymoron, that I wanted him to touch but then didn’t want him touch when they were lit.  The chocolate balls were on top of toothpicks that were inserted on top of the cake for Orion himself to remove and enjoy thoroughly on his terms, instead of candles.   
Happy Birthday To You! (Everyone's finger-pointing "You" at Orion while Dad signs "Birthday" on Orion. 

He was already fussing when we were about to present the cake to him. To let him know that we were going to have cake, I gave him a cupcake wrapper to help clue him in on what’s going to happen. He’s always had cupcakes for his birthday so this one was going to be a surprise in two ways, it’s not cupcakes and it’s awesome! The wrapper calmed him down as he crunched it in his hands.  We set the cake down in front of him sitting in his red wagon, he touched the cake, picked and pulled at the fondant and once he discovered the Orion braille in chocolate balls, he committed to eating them.  He totally touched that cake!  Each slice a guest had was blessed by Orion’s fingerprints. 
Orion works on the last braille dot and feels Mom cutting apart the last pieces of cake.
A, Orion and S pose with the cake after Orion started picking off the chocolate balls.


 Amy has a special place in Orion and our family’s life. She was Orion’s first teacher, even though she trained as a teacher of the Deaf, when we moved to Austin, Texas just in time for the 2012-2013 school year.  Amy dove in head first, learning how to work with our precious Deafblind 2 year-old son.  We immediately saw her on the floor with him, putting herself in his skin (I’d say “his shoes” but Orion doesn’t like wearing them) as well as going to workshops, taking intervener courses and geeking out on DeafBlind strategies. Orion was so very fortunate to have her on his team early on!  Now the same Amy we know is in a different setting and is not a stranger to Orion.  She’s in the kitchen now, creating eye-catching specialty cakes with her business partner, Tina. She still does intervener work with Orion.
Amy holds chocolate-mouthed Orion!

Little did I know, she and my husband, Thomas, schemed up yet another awesome surprise cake to celebrate my 40th birthday.

that. specialty cake company also made my birthday cake!
Two tiers of cake and edible art!  Bottom was white cake while the top layer was angel food.
Close-Up: A sweet version of me painting a photograph of the kids and I on a sugary easel.
Photos of cakes created by that. specialty cake company can be found on Facebook, http://www.facebook.com/thatspeciatlycake and on Instagram, “thatspecialtycake”.  You can make appointments by e-mailing hello(at)thatspecialtycake.com.

Tuesday, September 6, 2016

Razoo Fundraiser: Orion's DeafBlind Intervener Internship Fund

This video is in American Sign Language. Subtitles and voiceover is in English.



Links to the resources mentioned in the video:

Fundraiser: https://www.razoo.com/us/story/Nvfh3g Last day to make a donation is September 10, 2016.

Facebook Page: http://www.facebook.com/O.T.Withrow

Deaf Blind Kids, including the child count statistic shared in the video: http://www.nationaldb.org

DeafBlind Interveners: http://www.intervener.org

Friday, September 2, 2016

Finding the Trail to Tactile Sign Language

When Orion was a baby, Thomas and I wondered how he would get from where he was as a baby, with fists and Moro reflexes, all the way to a tactile-signing DeafBlind adult. Just like the DeafBlind adults in our Deaf community. “How?” we wondered and it would stay like that for a couple years.

Meanwhile, within hours of Orion’s birth in July 2010, we went ahead and started with what we called “signing on the body” with our sign for “MILK". We decided we should go to him rather than expect him to put his little baby hands on top of our hands because that’s simply something infants don’t do, except perhaps grabbing a single finger with their fists.

One month old Orion grabs Daddy's pinky finger.
Description: Extreme close-up photo where a baby's forearm, while wearing a light blue long sleeved outfit, is visible holding onto an adult's pinkie finger.


I’ve always believed in the Hand-Under-Hand strategy for the DeafBlind child’s autonomy, observations, attention checks and participation opportunities. In the past year, I realized we answered the 6 year old question, that one of the pathways to tactile sign language communication was Hand-Under-Hand! Orion is learning that his hands make a difference, with them he is exploring his physical environment, other people’s hands and what their hands are doing. He’s starting to really see with his hands now, bring to life the saying I heard weeks before he was born, “DeafBlind children’s hands are their eyes". 

We still do use “signing on his body” also known as “touch cues”. What we do these days with Orion is letting him know we were here, then go to his hands (or he finds ours) and start out tactile signing (Tactile ASL, also known as TASL) since he’s getting better with voluntarily following our hand-under-hand action. When Orion doesn’t want to touch our signs, we then switch to signing on him but keep trying to return to TASL. We also continue to use touch cues when the TASL sign is new to him. 

Also an option is to imitate a motion or action associated with the action, this may speak for itself or is already identical to ASL. For example, to sign “OPEN” for twisting open the peanut butter jar, we hold an imaginary jar with the left hand while the right hand is on top imitating a lefty-loosey twist motion. That is the conceptually appropriate sign for that “OPEN” situation and it is what we actually do to open the jar. Because of their similarities to functional motions, these signs are likely to be among the first in Orion’s sign vocabulary.

Somewhere in that mix we must continue to use object cues, which are real objects or a recognizable part of the whole object. Children will understand what the object cue is since they’ve figured out what it’s function is, for example, a bottle, and it is in their hands right now and that’s their reference for what is to come next. Knowing American Sign Language, or any other language, is where you have the ability to talk about something that is not there in front of you nor happening right now. This is why we rely on object cues since Orion is not "there" yet. 

Orion feels his big brother sign "BUCKLE-TOGETHER".
Image description: A white haired 6-year old DeafBlind boy, shirtless and sitting in a black stroller has his hands on top of a 11-year old boy's hands signing "BUCKLE".

Hand-under-hand strategy allows Orion to feel his big brother snap together his stroller buckle. Orion may be feeling the same action with the skin of his abdomen.
Image description: A white haired 6-year old DeafBlind boy, shirtless and sitting in a black stroller, has his hands on top of a 11-year old boy's hands, connecting two ends of a buckle.


Orion still pulls away a lot from our tactile signs and hand-under-hand efforts but we noticed he is willing to “look” longer and longer. At 6 years old we are still seeing a slow but true trend of growth and participation from Orion. It’s a long journey and we need endless springs of patience, but it is still possible!

I’ll leave you with an enlightening and affirming quote shared in one of the OHOA Modules*, “Communication at any level is still communication.


*Open Hands, Open Access DeafBlind Intervener Learning Modules, http://moodle.nationaldb.org.

Here is a video also related to touch cues, body signs and tactile sign language.

Tuesday, July 12, 2016

We Need to Foster the Growth of Meaningful and Effective DeafBlind Education in the United States

(Image description: A screenshot of National Association of the Deaf's Instagram account, @NAD1880, displaying a photo of a 4 year old white-haired, caucasian DeafBlind boy hugging his mom's hand with his head. Only his head, left hand which is holding a wooden toy, and his mom's hands are visible.)
Orion lovingly hugs his mom's hand.
(Image description: A screenshot of National Association of the Deaf's Instagram account, @NAD1880, displaying a photo of a 4 year old white-haired, caucasian DeafBlind boy hugging his mom's hand with his head. Only his head, left hand which is holding a wooden toy, and his mom's hands are visible.)

If you’ve met one child who is DeafBlind, you’ve met just one DeafBlind child.  The number of DeafBlind kids in the United States is so small, since it’s a low-incidence disability. In 2014, there were 9,133 children from birth to 21 identified as DeafBlind, https://nationaldb.org/childcount.  My son Orion is one of the 1,709 DeafBlind children from birth to 5 years old counted in 2014.  DeafBlind children are also diverse due to additional disabilities, family background, communication needs and growth, levels of deafness, how they use their vision, if any, and how they move through their environment.  Many were born DeafBlind and many became DeafBlind before or after language acquisition and concept development, or later in their K-12 educational years.  Most importantly, DeafBlind kids have their own personalities and favorite things to do!  Check out my blog, “A Mom’s Musings”, at http://hexwit.blogspot.com for stories and videos of nearly 6 year old Orion, our family, and links to online resources and information that I found extremely helpful. You can also find Orion and other inspiring children on social media with hashtag searches for #DeafBlindKids, #DeafBlind.

There are DeafBlind Projects serving each state, providing technical assistance in the classrooms and in family homes, workshops, training, networking with other families and resources.  Find your state’s DeafBlind project as well as pretty much anything else “DeafBlind" by visiting the National Center on DeafBlindness’ (NCDB) website,  https://nationaldb.org  Finding my state’s DeafBlind project was one of the first things I did… before Orion was born!  On my blog for new parents is a list of items, including early intervention, parent-to-parent connections, communication, playing, etc., to consider for families of DeafBlind children, http://hexwit.blogspot.com/p/for-fellow-parents_19.html 

Many DeafBlind children benefit from #Interveners who are trained in intervention, communication and educational strategies for children with deafblindness.  Interveners can be found in schools, community and home but they aren’t everywhere just yet.  This is just one small part of where the Cogswell-Macy Act will make a difference in the lives of DeafBlind children, by properly identifying and counting DeafBlind children, recognizing and facilitating the growth of qualified personnel, whether they are interveners or teachers.  Photo contributions of many families with DeafBlind children made it possible for me to put together a video in support of Title III, the DeafBlind part, of the Cogswell-Macy Act, https://www.youtube.com/watch?v=wVS3H9Z2FHM 

The biggest concern is that the contents of the Cogswell-Macy Act needs to happen “yesterday”, our future generation of DeafBlind children are being born, celebrating their first or sixth birthdays soon with their parents advocating for what is appropriate for their precious family member.  

With the leadership of the National Center on DeafBlindness, funded by the Office of Special Education Programs (OSEP), leaders, educators, interveners and family members of DeafBlind children and adults worked together on specialized module-creating teams over several years developing Open Hands, Open Access (OHOA) DeafBlind Intervener Modules.  You can visit the website at   http://moodle.nationaldb.org. The are currently 18 OHOA modules available with the final group of modules being field-tested right now and they will be revealed in the not-too-distant future.

You don’t need sight nor sound to inspire other people, that’s the gift our children are giving us and the world.  We need to give back to our DeafBlind children by the way of appropriate and meaningful education- we need to pass the Cogswell-Macy Act which has been introduced in the House as #HR3535 but not yet at all in the Senate. To pass an act of Congress is no small feat! 

In the midst of advocating you still can make a difference by supporting the growth of interveners and Teachers of DeafBlind (TDB).  Officially, TDBs are still very new that, at least in Texas where my family lives, there isn’t state certification offered yet like there are for Deaf education, blind and special education, and so on.  However, the passion for teaching DeafBlind children have been around for years!  Yes, to families there doesn’t seem like there are enough of them. We can help meet this need by the way of scholarships, planning on training, convincing our local college or university to offer certificates or degrees in deafblindness as interveners or teachers!  Or even start working in this rewarding field ourselves!

I want to thank each single person, wherever on this planet they are, who stumbled into or sought out the field of educating DeafBlind infants, children and youth. Thank You from the depths of my heart!

Saturday, June 11, 2016

Laugh Everyday

It may be corny but each one of us needs to laugh every day.  When you do, you become happy, you are experiencing small, individual moments of joy.  Even when you sincerely try a fake laugh for someone else, it's likely to be contagious anyway and you all fall into genuine laughter and joy.  When you accomplish laughter everyday, you have successfully incorporated laughter in your attitude and lifestyle.  It is even better when it is your family's lifestyle, too.

In Mitch Albom's book, "Tuesdays With Morrie", he talked about balance, that one cannot experience true joy without experiencing sorrow.  There's a balance where you swing from side to side, from joy to sorrow and vice versa.  It is not good to stay exclusively on one side of this balance, whether it is happiness or sadness.  I can come across as an eternal optimist in this blog and trust me, I have fallen flat on my face before.  What we all need to do is appreciate being down and then put on our big kid underwear and get up again.  Get up and make the best of where you are with what you have.

Anyway back to laughter...

If you can't remember if your child has laughed today, do something! Tickle him or her, swing her, go for a drive and roll down the windows, squeeze his cheeks and touch his nose (that something Orion does to himself, too), blow raspberries, etc.  Those were comments from each person in our family when I asked them what they do that makes Orion laugh.

Here's a video of Orion giggles, squeals and laughter to enjoy!

"Really Happy Reel"

Orion giggles, squeals, and laughs his way through this 2 minute video with special appearances by his big brother and sister, deaf family dog, Dad and a DeafBlind Intervener. (Minimal description is at the YouTube location, will elaborate soon when time is available.)

Sunday, April 24, 2016

Playing Through Touch (VIDEO)


This video is about playing through touch and using anticipation, with Mom's fingers crawling up his chest to tickle his neck. This gives Orion positive experiences with tickle and anticipation games. (Text is in the video description at its original YouTube location.)

Sighted children are able to see the tickle monster or The Hand diving in to tickle-bomb them.  If you used the same sneaky technique on your DeafBlind child, you're going to scare them.  Thomas and I wanted Orion to experience the same thing but in a DeafBlind way- what's similar in both situations is anticipation in a fun way.  Orion has no sight or sound* so he's learning mainly through the senses he does have, most commonly known as touch, taste, smell.  (There are more senses beyond the 5 senses, too, by the way!) In order for Orion to know we're about to come in, we go ahead and gently touch him on his abdomen, crawl up his chest in a slow-to-quick motion (slow most of the time) to where we ultimately tickle him.

We have accidentally frightened him, even when we mean well.  I recall one time I was so excited, I mean, so emotionally overtaken when he accomplished something, I tickled him right away in celebration. He was startled. I hoped I did not scare him to the point he avoids doing that skill again.  (He did it again anyway and I knew better to be gentle.)

*Orion has bilateral cochlear implants. He currently wears just the left processor for brief periods of time in school, especially during music class if he leaves it on.