Saturday, March 4, 2017

Pearls of Touch

My muses for this are from two key sources: my DeafBlind, ProTactile-using (and PT inspiring) friends Hayley Broadway and Sarah Morrison, and my 6+ years of wanting accessible, yet natural feeling, interaction and information for my DeafBlind 6 year-old son Orion. These thoughts were jogged while preparing for Hayley and Sarah’s much-anticipated ProTactile presentation at the 2017 Texas DeafBlind Symposium on 3/4/2017.

The comfort of touch.
Photo credit: Anastasia Withrow
Image description: A woman with faint colors of lilac and teal in her hair, on the left, embraces her white haired DeafBlind 6 year old son on the right. He is resting his head on her left shoulder, facing away from the camera, his hand is over mom's right index finger. Mom's left hand is holding his upper back and she is looking at horizon somewhere off the right side of the photo.


We’ve known since before Orion was born that touch would be a key part of his life. What we know today was refined, elaborated, practiced and it will continue to develop over time as we learn from our mistakes, discoveries, and Orion’s responses.

Communication can happen at any level ranging from the level of involuntary communication, and then voluntary communication including the simplest basic refusal (such as refusing food or spitting it out) all the way through to abstract languages such as American Sign Language, English, Tagalog, etc. My thoughts on touch grows upon the basis that it is versatile through any level of communication.

Touch for Communication

Disclaimer: I’m a Deaf mom who loves any topic regarding congenitally DeafBlind individuals provided by presenters, DeafBlind-related specialists, and therapists in person or via articles and videos. For the sake of categorizing types of touch in my thoughts here, there are two— direct contact and indirect contact.

Direct contact

Constantly in skin to skin contact: any part of your body to any part of his body, in any situation (floor, bed, highchair, bathtub). Touch is not only done by your fingers but any part of the great skin organ we have.

When you greet Orion, we welcome you to:
1) Touch his knee, elbow or upper arm.
2a) Orion will put his hand on where he knows your hand is, or
2b) From his elbow, glide your fingers up to his hand.
3) Sign “Hi”. If he still holds on to feel what you’re doing, quickly add Orion’s name sign to say “Hi, Orion”, and then “Me” and your name sign.

Note: if Orion withdraws contact during any step, that is OK. He knows you/someone is there. Do not go directly to his face, chest or palm of his hands without greeting/touching him in the first place. Any new comments or actions, you touch Orion the same way as you greet him (step #1 and #2 above).

Staying in contact is providing constant feedback to Orion on your actions. Another benefit is that it’s less startling to the Deafblind child is tapping or prompting him with the same hand or body part that’s already in contact. Moving yourself or an object while in contact informs him where you/it ends up.

Tip: If he pushes you away, let him. Follow/accept where he puts your hand and stay there for a while and then go back and touch him. If he pushes you away again, accept and stay there. (Object permanence.) Orion does check and see if you’re still there even when he requires his own space.

Indirect contact
Other ways to indirectly inform him that you’re there if not directly touching him is through your vibrations, movement, scent and movement of air.

Some examples are sitting on the bench with him, bed, stroller, wood floor, etc. There’s no need to tiptoe around because its beneficial to be noisy or create vibrations because your DeafBlind child will know something’s up. When Orion was a baby, he’d lounge on a nice setup on the wood floor, you can feel when people walk through the room and approach you. We would touch the frame of his stroller or the edge of the playpen before touching Orion’s legs and arms because this alerts him that someone is near and perhaps approaching him.

Orion loves our bed maybe a bit too much. When I get up and go to the other side of the bed, instead of just walking around and re-touching the bed, I suggest you get up, keep your hands on the mattress- drum it, push it with your fingers, anything, including bumping your leg against the bed frame wherever you are— be a klutz— until you go to the other side of the bed, Orion will have observed exactly where you were, went and are now and will not be startled when you are in contact with him again. 

Touch for Information

Touch is not just for communication, it overlaps with information/observation uses, too. If nobody touched Orion, or any other DeafBlind child, while doing their own errands or activities, Orion/they may assume people just sit or lay around all day so he will do just that. He will have received misleading information even with the absence of touch!

Another touch information example is bringing Orion to the refrigerator to get the milk jug out, taking the top off, pouring it in his bottle, putting the bottle top back on, putting the milk jug cap back on and into the fridge and giving him the bottle to enjoy. This was not easy to do, and I recommend two people working together for this one but when this is done, Orion gets input to build up concepts about the things, people and activities in his environment.

We encourage nurses and doctors to let Orion feel the medical tools first before using them on him. Tools, including utensils, bottles are concrete, self-explanatory objects that Orion knows about. We can use these objects as object symbols when we’re not currently in the situation, such as letting him know we’re going to the doctor by showing him a spare stethoscope.

Creating habits and a lifestyle

If habit is a comfortable bed that’s hard to get out of, then touch communication is a bed I wouldn’t even try to get out of.

When this is an effort that you think of to do every day, every time, it has a chance to become a habit and then a lifestyle. It would be even better as a family, team or community lifestyle. Orion is a naturally happy boy, he is even more content and quick to play when we’re in touch with him.

This is something anybody can do, family members, teachers, bus drivers, doctors and friends can share of themselves through touch. Anyone. Abstract language is not required for touch communication and information.


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Related takeaways and my spin-off thoughts from Friday (3/3) enlightening general session presentations at the 2017 Texas DeafBlind Symposium. (Prior to the ProTactile presentation.)

  • DeafBlind strategies and ProTactile do connect with each other like the two circles in a Venn diagram. What I share here is in that overlap.
  • Your emotions definitely show though touch. Consider the calmness of contentment, tension of frustration/anger and the animation of excitement. 
  • DeafBlind autonomy for me also includes respecting the individual’s hands, no matter their age. We’ve almost always avoided doing hand OVER hand with Orion… we entice, tempt him find ways for curiosity to take over and he put his hands on ours rather than forcing the issue. When we did try hand-over-hand it did not work out anyway, he would successfully pull his hands away. He will not have any of it- of someone controlling his hands. Exceptions are asking for permission from a DeafBlind individual who understands the request and grants permission.
  • #DeafBlindKids. I mention “kids” because all kids are kids first. With the complex and fluid interaction of needs, health, external situations, action/responses and strategies for DeafBlind kids, it could become easy to forget the kid part! The new main URL of my blog, “A Mom’s Musings,” is www.OrionTheKid.com. When I get overwhelmed with the growing to-do list of strategies and ideas, I have to pause and ask myself this question: “What can I do with Orion right now?” 
  • ...and of course, I internally answer, “Play.”

Monday, February 20, 2017

Enjoying Eighties Music Via SubPac

Orion's intervener came over yesterday (Sunday) to play with him. It was a very welcome change for me as we've been short on interveners lately. There's only so much I can think of to do and actually do in a day to keep Orion's days rich and nurturing during school breaks, weekends especially long weekends with no school on Friday and Monday, when I'm the only parent in the house (hubby is scouting the Deaflympics venues in Samsun, Turkey at this time*) so it helps to have other minds and hands to help out. 

The photo below was of what I came home to after a quick Starbucks/HEB food run: a happy Orion hugging and moving the SubPac around with his hands and feet. Cyndi Lauper was playing via YouTube on his intervener's iPhone which was connected to the SubPac. Both Orion and his intervener were smiling and having a great time!

Accessibility was helped very much due to labeling the drawer that had Orion's SubPac in it. (Photo shown below.) And serves a great reminder that the SubPac is here and ready to play.  We have not worked this activity into a schedule yet as it's hard to keep the family on a rigid daily schedule, especially on no-school days. For now it's an item to check-off a list of activities Orion enjoys. 

Knowing Orion enjoyed Michael Jackson, his intervener played MJ's "Beat It". I think it's adding up that he enjoys the music of the 80's.  I'll try Tina Turner next... if any of you have suggestions of musicians who have "danceable music" I should share with Orion, let me know! (I know I'll enjoy it, too!)

I think Orion really enjoys the SubPac... and according to his intervener, Cyndi Lauper's song, "Girls Just Want to Have Fun," was playing during this photo.
Description: A smiling, DeafBlind white-haired 6 year old boy is laying on a bed, holding the SubPac perpendicular to his chest. The SubPac is partially hiding Orion's wide smile.


Description: light green masking tape pieces are placed on the bottom drawer of an oak dresser, the first tape reads, "ORION'S DRAWER," and the second tape below it reads, "SUBPAC".
I'm happy Thomas is able to go to Turkey, though, because unfortunately chatter on social media has been giving this richly artistic and beautiful country with many centuries of history a bad rap. Thomas reports that Samsun, in north Turkey on the shores of the Black Sea, looks good and clean, is safe at the level of any other ordinary place in the USA and the world, and the people are friendly! He's excited and ready for the Deaflympics there this summer!

[Edited to add link to DPAN TV News' segment on SubPac: https://www.facebook.com/DPANTVNEWS/videos/546292758896459]

Thursday, December 1, 2016

An Orion-Approved Toy: Squidz

If you're thinking of a holiday or birthday gift for a DeafBlind kid who has curious hands... or any other kid no matter what their abilities are- check out Squidz!

Orion wasn't interested in it at first but as time went by he learned that they have suckers. He'd pull them off the sides of the bathtub and eventually pull them off himself when I put them on him. And the best part- which happens spontaneously and only when I don't have my camera- he would put it on himself, thwock it off, then back on again and again!

Here's an image of Shrek-Orion, courtesy of his mama before he thwocked them off.

Also if you look closely in this photo you'll see Orion's hands are open flat, palms up. He was feeling and keeping his hands exactly at the surface- 50% in water, 50% in air.  And then his mom had to go and give him Shrek antennae.
A 6 year old white-haired DeafBlind boy relaxes in the tub but also has two long 'antennae' with green suckers stuck on his forehead.
A 6 year old white-haired DeafBlind boy relaxes in the tub but also has two long 'antennae' with green suckers stuck on his forehead.

Tuesday, November 22, 2016

Orion Meets A New Tactile Music Experience: SubPac

I couldn't resist adding the following lines I came up with to the video:

"There's a new tactile music experience in the house...
It's boom in a packpack,
Power in a pack,
Subwoofer in a seat,
Bebop for the body,
tactile tunes for Orion!"


 The video description is in the information section under this video's original YouTube location. 

Wednesday, November 16, 2016

Accessibility Anxiety

A screen shot of a happy Orion and tired mom waiting in an exam room around 90 minutes past appointment time, apparently while the staff figure out what to do about a no-show interpreter and finding a VRI unit. There's more to the story of the no-show interpreter, one agency transferred all their contracts to a new agency during that very week. Problems arose, obviously! *frown*
(Image description: This timered selfie was taken in an exam room, the facing wall is white, ceiling is white, wall on the right is a dusty green color, a computer monitor sticks out of the white wall. A brown haired woman is holding on her lap her white-haired 6 year-old son who is happily hugging a piece of teal-colored egg foam. The boy is wearing dark green pants and just visible is the heel of one of his bare feet close to the camera.)

Accessibility anxiety.

Ever heard of that? This term caught my eye when it was brought up in my community- the Deaf Community. It's for worrying about any form of access- communication, physical, whatever barrier that usually is and should be there. This, I can see applied to any disability. Will an ASL interpreter be present? Will they even be certified and qualified interpreters? Are there strobe fire alarm lights in this hotel room? Will it be wheelchair accessible? Will I have to roll through mud? Is there a ramp next to the flight of stairs so I can enter where everyone else will? Is there a braille label for the women's bathroom and the men's? These are just some examples I could think off the top of my head.

Today, I called to confirm Orion for an appointment tomorrow with a new speciality doctor.  This was a new speciality to add to Orion's list- Physical Medicine and Rehabilitation, a.k.a. "PM & R". The receptionist pleasantly said, "Don't worry, we called that number and got confirmation that an interpreter will be here tomorrow."

The last two Dell Children's visits, both during one week in September failed to produce an interpreter and they pulled in VRI (Video Remote Interpreting) iPad/tablets that had serious technical problems both times. What happened both times were the same problem- the interpreter in the iPad could not see me but I could see them. How could they see my signs? I salvaged the situation by speaking to the doctors and nurses and looked at the VRI interpreter/tablet to sign what the spoken responses were.

Hospitals and clinics like VRI, I suppose because it is cheaper. However, delays and technical issues happen often. I went to the ER once and rejoiced when they conceded the VRI was not working and called in an actual, in-person interpreter and that was another hour of waiting, sleeping on the exam room bed.

VRI is not even DeafBlind accessible- you can't tactile or improvise the physical situation for accessibility for the DeafBlind patient. The size and clarity of the image of the Lilliputian-sized interpreter is at the mercy of the 9-inch tablet. 

If a Deaf person is really sick, they cannot sit up or be coherent enough (mumbling signs, fighting pain, etc.) I've woken up from abdominal surgery wanting to be put back to sleep, I don't even remember an interpreter in the room! A VRI would have had a heck of a time reading me in that state. I know there was a live interpreter because I put my foot down before the procedure, delaying the start by a couple hours, that I would have nothing to do with VRI.

As for Orion's doctor's office visits, I often wished I had a second person in the room with me- Thomas, an intervener, or a friend- so I could sign easily, without wrangling our restless Orion who's had enough of this boring little room with nothing to touch.

"Still," I asked, "is it a live person, right there in the room with us? I don't want VRI."

"Don't worry, an interpreter will be here tomorrow."

That still doesn't answer my question. I could only wonder if the receptionist could differentiate between a "live, in-the-room interpreter" or a VRI interpreter? I settle for a wait-and-see approach.

Sighted, hearing people don't have to deal with accessibility anxiety. *sigh* I don't envy my neighbors one bit but sure wish our society was accessible for ALL people. ALL.

Update, 11/17/2016:

We got one of Austin's finest... in the room! (Interpreter, that is.) I felt I was able to express all my concerns and observations, the doctor asked thoughtful questions including one of my favorites which makes him an awesome doctor in my eyes: "Other than food, what motivates Orion?"

Motivation.

Doc knows that likes and dislikes are important to consider for each individual child. I couldn't help grinning and feeling thankful for the reminder.  Oh, and to his question, I answered, "Water."

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.