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.


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! 

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.