Wednesday, October 26, 2022
Saturday, November 13, 2021
|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.
MusingsI 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."
Sunday, September 12, 2021
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
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.
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.
Saturday, 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.
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
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?)
- 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.
Tactile Resolution: Nerve Density and Actively AttendingDuring 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.
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.
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?
Note: These pranks may or may not have actually happened.
Friday, March 27, 2020
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 ContactOur 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 RoutinesAs 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.
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 MusingsWith 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.