Saturday, November 13, 2021

Orion and COVID Vaccine #1: They Met!

Heather Withrow
November 13, 2021

Guess who got his Pfizer COVID vaccine injection #1! 

Orion, post-injection and waiting.

 Thank you, Dell Children's and Orion's clinic, for partnering to make this COVID drive vaccine happen a.s.a.p. for 5 to 11-year-old patients like Orion.


Orion's behavioral response just before the COVID vaccine shot for 5 to 11-year-olds leads me to believe he knew a ouchie needle was coming.

I had whisked him out of school in the late a.m. on Friday for a nearby drive-thru vaccine clinic hosted by his (God-sent) comprehensive care clinic*. Filled out the appropriate forms as he crawled out of his carseat and onto my back, feeling the paper and pen as I scrawled my responses. I carried him over to the people giving the vaccine and sat down. I advised a nurse that we'd need 3-4 people to stabilize Orion's limbs and shoulder (he'd injured himself years ago when he jerked away his shoulder when a flu shot syringe needle was still in it).

I lifted Orion's left t-shirt sleeve and he became tense and started making a continuous soft "upset" sound. He intently indicated "drink", using my hand and both his hands (or maybe he could've meant "Mom"?).

I used a "finger" protactile (PT) list (I tap Orion's index finger for item #1 and then tap his middle finger for item #2) for 1st: shot (lifted his left shirt sleeve again) and 2nd: drink (using his PT sign for drink).

Orion (with my hand and his): drink (PT).

I repeated the list.

Orion tried to get away from me, standing up and started taking steps, pulling away from me as if he were a kid who has been skipping, running around for years. It struck me, wondering what if I let go? What if he indeed starts doing that but in reality he'd fall straight down onto the parking lot pavement?

I stood up holding him, his body started to relax again. Staff nearby handed him a tactile toy and he took to it, touching the toy along its length.

It was time. I sat down again with Orion in a "hug" facing me, lifted his t-shirt sleeve. Orion started struggling, including jerking his shoulder backward and forward, I was holding his left lower arm. People closed in to hold Orion still. I closed my eyes for some peace!

All done! Orion vocalized his displeasure and made me rock gently side-to-side for the first part of the post-shot waiting period. I took some selfies that you now see in this post.

As soon as Orion was returned to the classroom and touched food he was going to be able to eat, he was all right! Food is definitely a love of Orion's. 

Orion also had a lung specialist visit the same day but in the afternoon. We do want the flu shot for Orion but this was dropped because there were not enough people at the office to hold Orion to safely get the flu shot. (We'd read that it's OK to get both on the same day and why not deal with symptoms for both shots than two different times with likely the same symptoms of soreness and feeling crummy.) We are watching Orion for symptoms.

Musings

I am SO excited for Orion and for us to soon start our own journey to near-normal activities. Our whole family has been and still is very protective of Orion. It's a new feeling... the excitement and the protectiveness, being cautious, calculating and avoiding risks. While going through the list of questions that come before receiving the COVID vaccine, I was asked if Orion had COVID before. I replied, "No."

In my head, thought along the lines of, "Are you kidding?! We worked so hard, gave up so much to protect Orion! We're here now, finally!"

COVID is around to stay, I understand, just like the flu. I am so used to wearing masks including being annoyed by masks but they're worth it. They work! (This is a whole 'nother story that has us true believers of masks that protected Orion in a close-contact situation early last year in which the family quarantined/canceled appointments & in-person school for 2 weeks.) And they hide stuff going on with your face, ha!

Stay well, everyone! Thank you to everyone who helped keep (and continue to keep) Orion, children, and vulnerable members of our communities safe as much as they could during the COVID pandemic.

*I was in love with CCC when clinic staff came in the exam room and offered me some water or coffee. So simple but so... embracing.

Sunday, September 12, 2021

Finger Tap-Tap, Nail Clip-Clip

Heather Withrow
September 12, 2021

Like the title of my blog mostly on Orion, "A Mom's Musings", fellow parents, friends and educators move me to muse, too! 

A question, or a need, came up this past spring regarding clipping the nails of a DeafBlind child. Funny, my strategy since Orion's birth is to wait until he is deep asleep and clip his nails, especially if he had a bath earlier that night. However, since one of Orion's interveners, Nanette, tried out using a Protactile practice of giving natural, practical tactile information, we've been able to clip his nails while he's awake. Nanette tapped the finger of the nail about to be clipped. What you'll see in the video of Orion and I are edited selections of the introduction of the nail clipper, tapping/clipping and letting Orion know that I was done. 


It's important to note that Orion's willingness to have his nails clipped did not happen overnight. He currently allows 2-3 clips per nail. It used to be 1, then a hard limit of 2. Sometimes we could clip a few fingers and he would end the session. Whatever happened, we kept circling back and trying, even if spread over a a few days. No kidding--- it usually takes me 2 days to cut his hair! 

However it ends, by Orion or by actually finishing all 10 fingernails, we give Orion the nail clippers for him to keep and control. This way he knows he's done, will be left alone (at least for a few hours or a day).  When done for good, I sign "Done" on his chest. This gives Orion closure on this activity and he has control of his body and environment. (Check out this great Texas DeafBlind Project blog summary on Maurice Belote's presentation, "The Impact of Cognitive Closure for Students who are DeafBlind".)

(For your child or student, you know whether or not you can let them handle nail clippers safely.)

Related fun Orion fact

He loves to explore long fingernails! We discovered this during early intervention when he was a baby. One of the providers always had long, painted fingernails and he would take his time tactually explore her fingernails. The cool thing about this is she was the only one and I just knew he recognized her every time.

Tuesday, July 13, 2021

Orion Goes On the Defense: Tactile Experiences at the Doctor's and Dentist's Offices

Heather Withrow,
Wednesday, July 7, 2021

Orion KNOWS when he's in a medical or dental establishment. I'm so curious what the clue was. (Brainstorming here: maybe it's the smell? Orion's sibling concurs.) He's probably just tolerating us sight and/or sound-reliant folks as he JUST KNOWS. With him knowing, he's already on the defense, freestyle--- slouched down almost on his back, legs and arms up and ready to grab whatever touches... akin to a venus flytrap. Well, mostly arms, and we don't want to go down that route with Orion. We want to keep Orion's experiences with touch as positive as possible. (Positive must outweigh negative, by far!)

This morning, we had to go to the dentist because yesterday I noticed Orion's cute, uniquely shaped tooth's tip broke off and there was flesh-coloring in the middle of it. The tooth is on the lower jaw, second one on O's left from center. Its original shape was a pretty much a tooth, yes, but with a niche, as if it were human sized, it'd be an egg pod chair. Unfortunately, the cavity squad also thought that was fantastic. 

Once in the waiting area at the pediatric dentist, Orion went on the defense! He would not let me pull his blanket away from over his head. I kept in touch positively with Orion throughout our waiting, knowing that's helpful than him sitting, sitting, sitting and then being wheeled to the exam room and then being touched plenty right away. That's why the continued, comforting touch as we waited. 

The team readily knew that I'd tactually facilitate what needs to happen--- based on what we all learned from his last exam/cleaning 6 months ago. We usually collaborate to have Orion do lap exams and they usually work but for today and during his last visit 6 months ago, he did not want to get out of his stroller seat.  

Tangent warning! Another experience that likely contributed to O being defensive in medical settings: Last fall--- 9 months ago--- we had to have 4 people to safely give 50+ lbs octopus Orion his much-needed flu vaccine. 1: Mom, 2: the nurse with the syringe and 3 & 4: two others to gently hold his arms and legs.  Orion also has a scar from a flu vaccine injection from an earlier year where he flinched his shoulder forward as the nurse inserted the syringe. Poor kid, poor nurse! That's why he needs someone to hold his shoulder in place! The doctor who came to check said it could use stitches but we both acknowledged it's better left alone than to... stick Orion a few more times! Now it's a neat little dash of scar.)*

I gave Orion loving squeezes with both hands (open hands following the shape of his cheeks... that he likes), mommy hums on his forehead, and tapping his mouth to prompt him to open it. Of course he doesn't open it. The dentist offered Orion the little mirror tool for touching at his own pace. I love it when professionals offer tools for kids to explore--- not only kids learn, they are being communicated with, they're getting more information than they'd get if there weren't tools around and were being offered abstract words in whatever form. When O was done with the mirror, I had his hand touch my mouth as I opened it slowly and repeatedly. Tap-tap Orion's face near his mouth with my finger, hoping to suggest he copy me. Nope. Again, I modeled my mouth opening. I had to gently pull down his lower lip and he let me hold it out of the way, showing his huge cavity on The Tooth with ample time for the dentist to look, look, look. Eeek! (That's me getting a really good at his geode-like cavity tooth).

That geode-niche egg chair tooth was going to get pulled out eventually as Orions lower jaw is kinda small, thus his teeth are crowded. Orion's going to be sedated for his next cleaning, x-ray, extraction and have addressed whatever else they'd find in the operating room at Dell Children's at some point soon, depending on scheduling. It's shockingly booked up into December! I was advised that openings do come up much earlier anyway. 

On our way out, Orion got his stickers. He enjoys stickers. I love that pediatricians and pediatric dentists have stickers at the office.  We picked up some fries from Hat Creek, too. Orion needs something positive from all this! 

*Note
I'd LOVE to know if anyone has a safe way to let their DeafBlind loved one know that a needle syringe is going to be involved. I'd use an actual syringe but... needle. If the needle were removed, it may be similar to an oral syringe. We use oral syringes every night. 3 separate syringes to dispense meds so Orion may keep tactile track, 1-2-3-done. 

Currently, I tap Orion's shoulder a few times where the vaccine syringe will go. Nothing light, playful, loving or comforting as I don't want to mix up signals. Nothing startling or scary about the taps intended either. A surprise approach is not an option, I'd rather he know... if he defends, fine.  I'm working toward Orion just knowing and "hanging in there" just enough to get the job done and be on his way.

Saturday, September 19, 2020

ProTactile Connections to the World by Oscar Chacon

The following e-mail is from a listserv that I am humbled to be part of, shared in its entirety with permission from the author. In this post, my musings follow after Oscar's thoughts. 
-Heather Withrow, September 19, 2020

From: Oscar Chacon
Date: March 16, 2019
Subject: PT Connections to the World

PT squeeze ‘hi’ to you, family and friends,

ProTactile Connections to the World (OH MY!)

I had been going to Chicago Loop public library by L Train for a while. As I traveled and navigated through the city, I came to realize there are three PT major connections to the world. We are actually living in the tactile world. There are auditory and visual worlds out there meshed to this world. I have access to the visual world in low resolution stimulations. But in the tactile world I will write about is where my stimulations are high resolution. So these connections that I will describe had given me fascinating thoughts and insights to live in this amazing historic moment as a DeafBlind individual.

Before I go on, I want to define one term beforehand: background information (info for short.) I’ll be describing tactile world as if I assume you the reader is following me in tactile world. So that means some of us will have additional info in addition to tactile info as they move through the world. These types of info are what I call background info in this essay. Sometimes I describe these info, other times I don’t.

PT Connection #1: Direct tactile interactions.

I wake up to the tactile world in the morning, feeling my blankets and sheets surrounding me. I feel for how to remove these and do so. I feel my body moving off the bed. I walk with my feetwear or without, feeling texture and other tactile info on the sole of my feet. I feel different things put in the space I wake up in. I may or may not change any spaces I will travel through. I can feel with tactile sense if I am designing a room. For example, if I had a room for PT users to converge for various discussions, I may design with small tables with three chairs in front of them against the wall spaced few feet from each other, around the room. Then if there is enough space to feel too spacious to me, I will add central table-three chairs cluster(s). Then add rugs of varying designs that fix my position with ease. I feel details as I wash dishes. Many more examples of direct tactile experiences with loaded information in themselves (background info is always given for various individuals.)

First connection is direct tactile info when you touch anything.

PT Connection #2: Tactile Interfaces with Tools

I like feeling various bumps, motions, wheeling along, and many other sensations as I walk with my white cane (a tool). I may have some visual background info as I walk in the public. Still, these sensations are full of info if I want to derive patterns needed. Braille displays encodes English language in tactile dots. Plus they come with their own buttons that I feel and learn their functions. The train is a tool even if I may have the background info of watching scenery pass by. I still am fascinated by various bumps, motions, rolling of body, etc because I realize I can get a chosen pattern I need. It doesn’t matter what it is: we can get secondary tactile information from things. One thng I am dreaming is in relating to elevators. I know it have Braille numbers/letter to push the button labeled so. I will love it if the elevator also have vibrator and maybe refreshable Braille display indicating floor numbers.

Having tools giving me tactile information is the second connection.

PT Connection #3: ProTactile Languages

DeafBlind people including me had came together and had these first two connections to the tactile world. We also have the feeling of reciprocity between us. These inspired us to express ourselves in interactions by touching and stimulations related to touch which lead to PT languages flourishing in various places.

ProTactile was an idea presented and practiced by DeafBlind people starting in Seattle in 2007 then spreading ever since. It started with the idea that we need to be extra supportive of touch in the prevailing culture in order to inspire awareness in DB individuals to touch their world more. Now we are living in the tactile world with much more opportunities for DeafBlind people.

I was struck by these three connections to the tactile world. A world awaiting more explorations! And high resolution!

Any more PT connections you can think of or your own high resolution tactile exploration experience? Please add your thoughts!

--
[End of e-mail]



My Thoughts on Oscar's Experiences


Oh yes! Oscar's e-mail and his use of "high resolution tactile exploration" was a massive buzz-word for me for the reasons shared in my September 15, 2020 post on Tactile Resolution and Attention. Oscar's perspective on resolution was quality of information that came in through his senses, whether directly, or through secondary, indirect ways. I never thought of resolution that way until Oscar's version was associated with it being rich in information. This is different from my original, personal definition of "resolution" by the number of nerves through our tactile sense.

Oscar's thoughts on direct contact reminded me of 1st generation images (here we go, more graphic design talk!); and his thoughts on secondary tactile information is comparable to 2nd generation images. Basically 1st generation images are original media (a.k.a. direct contact) while a 2nd generation image is a photocopy of the original. Taking a picture of a picture of a picture; or a copy of an original documents' copy... with each level further away from the original, the information quality degrades but you are still somehow getting information. Just like Jude Nicholas (2010) shared, areas of skin with less nerve density still contributes information to the brain. I also see a connection with the first principle of ProTactile (granda & Nuccio, n.d) which focuses on "contact space"--- when more body surface areas (arms, leg, back, etc.) on the receiver are being used there are more opportunities, or wider bandwidth, for information to flow in.

More musings on this to come!

References


granda, a. & Nuccio, J. (n.d.) Protactile Principles. Text within the body of an e-mail received August 3, 2020 via Introduction to Protactile Theory (course by John Lee Clark).

Nicholas, J. (2010). From active touch to tactile communication--- what’s tactile cognition got to do with it? The Danish Resource Centre on Congenital Deafblindness.


Tuesday, September 15, 2020

Tactile Resolution and Attention

Heather Withrow
September 15, 2020


Here's another DeafBlind rabbit hole journey I'd like to share. (Or after reading this post, you might think that an elaborate rabbit warren would be a better analogy?) 

A lifetime ago, I studied for a B.A. in Graphic Design at Gallaudet University. It is still beneficial to me these days and I was pleasantly amused when it came to musing on the topic of tactile perception, information and resolution. A couple papers I have read (see references) and people’s thoughts have also converged in an exciting way for me. Such as:
  • Learning more in 2018 about our somatosensory system, nerve density, tactile perception, and cognition in a 2010 paper by Jude Nicholas;
  • Reading a very enlightening e-mail in spring 2019 from Oscar Chacon as he described his tactile experiences, describing different tactile interactions and mentioning ProTactile bringing “high resolution” connections; and
  • Taking a truly profound, thought-provoking 4-week correspondence course this recent summer titled “Introduction to ProTactile Theory" led by John Lee Clark. This helped me understand much more about ProTactile and contact space. 
In this first post of a few, I’ll focus on a comparably small pearl of a takeaway from Jude Nicholas’ paper. 

Tactile Resolution: Nerve Density and Actively Attending

During one of my DeafBlind-focused graduate courses at Texas Tech, I came across a paper that was fascinating, overwhelming and worth re-reading several times: From active touch to tactile communication--- what’s tactile cognition got to do with it? by Jude Nicholas (2010). Nicholas (2010) wrote that the density of nerve endings in a specific area brings in more information than a large area of skin area perceiving tactile information. His paper included an illustration of a brain and a visual representation of body parts lined up just off the the brain's surface (Nicholas, 2010, p. 9). The body parts are visually exaggerated, not exactly in order and not in size proportion because they are decreased or increased in size according to its number of nerve endings. For example the hands and face are larger compared to the elbow, shoulders, and the rest of the lower body through to the toes. This is a visual representation that our face, eyes, lips, hands, fingers have a higher nerve density than the rest of our body.

Exploding into my mind was the analogy of resolution in visual print media that we know as pixels per inch (p.p.i.) being similar to the number of nerve endings for the amount of information perceived via touch. Perhaps another way of saying it is nerves per inch, “n.p.i.”? The higher density of nerve endings is similar to higher p.p.i. images. Images as you see it (without zooming in) on your computer monitor are shown in 72 p.p.i. resolution (low p.p.i.-> smaller file size-> easier web page loading... at least for in 1997 with dial-up Internet services!); photo prints are usually 300 p.p.i. You can go higher to 600 p.p.i. but 300 p.p.i. is already great. If you zoom in on an image locked at 72 p.p.i. on your computer, you will see jagged or blurry edges that are not well defined like higher p.p.i. images). (The numbers of pixels is controlled in how you plan to take photos, scan and create digital art that are eventually printed out.) This higher resolution via density of pixels in a single printed square inch brings us to the topic of nerve density throughout our bodies.
Two side by side copies of an illustrated "peace" sign. The copy on the left (300 PPI) is well defined compared to the blurry copy (72 PPI) on the right.
[Image: Comparison of image quality based on pixels per inch (if printed at 300 ppi).
Image created by Heather Withrow.]

Nicholas (2010) points out that many things we do still require tactile input anyway. Basically if an area on your skin area has a lower number nerve endings, akin to 72 pixels per inch, like the outside of your upper arm or all your toes, it still contributes to perception. It is using whatever is available and perceiving, thus helping information reach your brain for processing.

Two white squares are side by side, the square on the left has more dots (high density) than the square on the right (low density).
[Image: Comparison of high density and low density in dots.
Image created by Heather Withrow.]

Pixels per inch or density is just one of the working components of the brain show biz. In order for the brain to benefit from information coming through these nerve endings, the brain needs to be interested and paying attention to what may come (Nelson & van Dijk, n.d.). The hands, lips, whatever it is that is being used by a person to perceive, needs to be actively touching and interacting with the object at their own pace (Nicholas, 2010). This is another shout-out for giving DeafBlind people— babies, children and adults alike— time to explore… to think about what they’re feeling, the incoming information interacting with available pre-existing information in the brain and deciding on what to do next. Is it safe? Gross? Delightful? Toss it? What is being asked of me? Explore more? Speed-dice it and sauté it?

Since our back, outer thigh, arms, to name a few, do not actively interact like our dexterous feet and hands, they need to be freely and actively attending (the brain feeling via skin) to the tactile input in order for the mind to process what is going on. This is a nod toward people using ProTactile, how they use more of the receiver's body beyond tactile-signing only via hands. 

A functional example of paying attention is that you’d definitely feel the prick of a vaccine being delivered as you’re awake and dreading it. An example of not attending would be a when small snake drops onto you from a tree branch above as you’re in deep sleep during a camping trip, I would guess that you’d not shriek. You might continue to sleep or be startled awake but still unaware of the nope-rope's fall. Perhaps confused. Another example would be that you receive a generous swirl of cool whip sprayed onto your limp open hand as you sleep but only waking up a little to use the aforementioned hand to respond to a man-made itch on your nose.

Note: These pranks may or may not have actually happened.


Reference


Nelson, C. & van Dijk, J. (n.d.) Child-guided strategies for assessing children who are deafblind or have multiple disabilities. Netherlands: ivdmtw Noot Muis. AapNootMuis Productions.

Nicholas, J. (2010). From active touch to tactile communication--- what’s tactile cognition got to do with it? The Danish Resource Centre on Congenital Deafblindness.

Friday, March 27, 2020

Orion and Family, Staying Safely at Home

Heather Withrow
March 27, 2020
Wide-brimmed hat-wearing Orion is crouching/sitting on his bottom, feeling bark pieces in the front yard at home.

No school for our kids at this time as their schools are looking at their options and resources; getting ready to teach through a distance format. It'll be an interesting sea to sail when it comes to teaching across a distance a child who is totally DeafBlind. We'll find out through this sudden "opportunity" what it looks like.

Now, on the home front, we know kids like Orion benefit from routines wherever they are. It is so much easier to follow routines in school than at home. I'm sure I'm not alone in needing to take a very deep breath to ummmpphhh and commit to them for Orion's sake. Anything for Orion! He doesn't have as much access to information and make-do activities like his siblings have.

Our Decision to Reduce Social Contact

Our family decided to stay homebound when our oldest child came home from school two Fridays ago. We would only go out for necessities. We have two family members who would be considered high-risk if ill with the novel coronavirus, Orion is one of them. We had our last intervener for Orion a week ago. *frown* We decided with Austin's stay-at-home order issued earlier this week for 3/25 through 4/13, and perhaps interveners would be considered necessary personnel (not sure yet, doubtful), we would make absolutely sure that our family and interveners remain healthy by not having them come to work with Orion until the coast is clear. We know it'll be quite a while so our family needs to do more to keep Orion sane and comfortable. We miss our interveners and I know the feeling's mutual!

Looking for Interesting and Family-Maintainable Routines

As for routines, I realized we needed to elaborate on activities already happening on a daily basis. One is to dress Orion in the mornings so he would experience that every day. (Then he would take his own clothes off! He'll leave them on at school, though.) I don't know why I hadn't thought of this before. We'd always permitted him to chill in the attire he prefers at home, which is just pull-ups.

I wanted to be careful not to overwhelm myself and our family with a schedule of activities we had to hurry and check-off for Orion. We could add activities, yes, but we could look at including Orion more often on things already happening on a daily basis. We need to move forward carefully and know we need to give Orion and ourselves grace with having plenty of down time, too. Every one of us have our own needs, especially during these concerning times.

Yesterday, I decided to start an additional daily activity which was watering the plants in our front yard. He was not interested in the bigger "landscape" of the activity except for discovering the water coming out of the hose/nozzle and my showing him the different spray settings. He sat on my lap, in between my legs during that moment. I signed, both on him and on myself, "Water."

Today was day #2, he didn't have the same interest longevity with the water hose as yesterday. He wanted to be carried in the house by his brother but he needed to walk walk walk his short distances as much as possible. I know he walks more at school, so trying to keep up with that especially as I'm studying orientation & mobility and want him to keep on movin'! Orion dropped to his bottom, not wanting to walk but he was provided "wait time" to consider his options and for us to see what he would do. Orion decided to scoot and found the edge of the sidewalk and explored the bark. I noticed he was leaning forward onto his feet, lifting his bottom ever so slightly from the concrete. He seemed to be exploring, testing this delicate balance. Whoo hoo, Orion!
Orion appeared to explore balancing himself onto his feet and back onto his bottom.


He spent a while in that crouch/bottom-sitting position then lowered himself to laying. It was really nice and cool outside, bright and sunny, relaxing in the shade with the familiar, constant Texas spring breeze blowing/massaging our skin.

My point in sharing this is that the only thing that was actually planned by us was for him to go outside, with clothes on and water the plants that needed watering. Orion experienced and pursued, with us observing and following along with his cues, his own interests in that moment without any time expectations or demands. Such a welcome, enjoyable moment for all in a practical, natural setting. A nice way to start a day!
Skyler encourages Orion, using hand-under-hand technique, to discover the blueberry pot to his right. 
At a closer look, you'll see it's more like a forearm-under-forearm technique but that works, too!

A Mom's Musings

With Orion's siblings home and with opportunities for them to join in Orion activities, it's another way for me to coach them on hand-under-hand, wait/processing time, "Do With, Not For." I'm conscious about not wanting to overdo it with the kids because I want them to continue their natural interaction with Orion; it's mostly wanting to maximize the opportunities during these interactions. It feels like a delicate balance. I want to sensitively explore this more.
Two brothers, lounging in the comfortably warm Texas breeze.


As for Orion's routines, we have interveners who look for/maintain activities for Orion at home. This is all without interveners. It may look like, "Why hadn't I done this before anyway?" Yeah. I have my own mom guilt I deal with and being a graduate student which is akin to "people with not much social time at all", I put in much of my extra time in my family and tried to create "Taking Care Of Myself" time. I'm almost done with graduate school. I've had enough of doing things with the gray cloud of "graduate assignment due soon" hanging over my head as I try to parent. I'm almost there! I had just come off of an approximately 5-month orientation and mobility (O&M) internship of full school days just last month (early February)! As I was getting near my internship goal, I was also eyeing the increasing coronavirus spread, especially with the first COVID-19 positive patient in the United States being in Washington state, my home state. I was relieved to be able to reduce my frequent contact with multiple people and concerned for those who were still teaching (both employees and interns). I'm starting to be able to focus more on what we all can do at home.  Great timing. I'm grateful. 

I know each family has their own needs and resources, varying between family units. I'm musing that it's not about what and how many activities, it's about it being regular, interactive and enjoyable for our DeafBlind child... the bonus is these are great human connection and communication opportunities!

I hope we all are able to reduce our social contact as much as possible while staying in touch with our DeafBlind family members. Y'all stay healthy and shut down that nasty viral spread!

Tuesday, April 23, 2019

Feeling It: Orion is Eavesdropping!

Heather Withrow
April 23, 2019

With his right hand, Orion feels the hands of Roxanne, his teacher aide, and Elizabeth, his teacher, having a tactile conversation at school.
April 16, 2019. 
Orion is eavesdropping at school. Yes. This is mom-approved! A DeafBlind child tactually nosing in on conversations!

He’s been checking out tactile conversations through him touching the hands two adults in his classroom. A three-person unit! Two adults signing to each other and Orion is touching them with his hands. Using his feet are always an option for Orion. I know other DeafBlind children can relate to him this way--- being handy and footy. 
With his right hand already there, Orion brought his feet in to feel a tactile conversation between two happily amused educators.
April 16, 2019.

Observing conversations are a natural way of learning language and about the world; that doesn’t happen naturally for children who are DeafBlind. It dawned on me, perhaps during one of my past musing moments, that Orion didn’t have the benefit of just observing conversations happening between two other people, whether they were mundane or captivating. Growing up (Orion is now 8 1/2), when Orion experienced conversations, hand-under-hand observations, and hand play, it usually was between himself and another person. He had not extensively explored a tactile conversation between two other people. Orion has felt my arms or hands signing in the air, but not the hands of the person I was signing to. Children who hear can listen in on conversations, Deaf and hard of hearing children can see a conversation flowing through hands, facial expressions, body language. While conversation tones can be heard and seen, it can be felt as well. 

Symbolic words on the hands and body may still be abstract or elusive to him (I’m assuming… it’s a work of love in progress); I am thrilled he gets to observe the characteristics of a conversation between two others. He can feel the tone and responses of conversation participants. The best part is that he gets a kick out of it!

Moving onto an area I believe is an important part of this--- the home and school connection. I truly appreciate Orion’s team at school. They can sign visually with us parents and tactually with Orion and other students who benefit from it. They’re interested in tactile information, tactile feedback, ProTactile. When a school team picks up different ways to communicate, they’re ready to use them with any unique DeafBlind child who comes to them. Orion’s teacher is constantly reflecting on what’s happening in the classroom, accessibility and on the conversation topics between home and school. As a Deaf person, I know what it is like to suddenly realize I’d been unaware of a spoken (or signed) conversation happening nearby. That perspective helped me consider the DeafBlind version of the same thing--- missing a tactile conversation nearby simply because the Deafblind person was not made aware of it. Orion’s teacher was listening to us parents, and of course, she reflected and now Orion has opportunities to "eavesdrop". I love it. 

The delightful photos shared in this blog post were the roses that we just had to stop and smell during this bustling "rat race" season for our family. We want to create the time and space to do the same thing at home as well.

As a parent, I can say that having open lines of communication between home and school nurtures learning opportunities, whatever they may be, within the classroom and at home.
Orion experienced the laughter of others, Roxanne and Elizabeth, through ProTactile--- one way is feeling the laughter at the throat and the other is "tickle fingers".
April 16, 2019

Mom's note: I'm learning bits of ProTactile here and there from my DeafBlind friends. One etiquette tip I want to share with you that I've learned is that if you are watching a tactile conversation between two DeafBlind people and they're unaware of your presence, please let them know you are observing. (Strategies may vary. I've seen putting hands on the shoulders of the signers, or "looking eyes" (index and middle finger) touching on the shoulder.)