Getting Ready for Another Trip: AAC Words for Medical Experiences
I have had two busy weeks since I returned from Wyoming. Three priorities have been filling my days: Josiah's homeschool work, Nathaniel's speech program, and getting ready to leave again. I will dedicate an entire blog post to explaining our homeschool year. Someday. And I will write below about new developments in for Nathaniel's communication. But first some details about my next trip.
Nathaniel and I are leaving Sunday for Cincinnati and will be there two weeks. On Monday he will have a FEES study to evaluate his aspiration. On Tuesday he will have a tonsillectomy and adenoidectomy. Hopefully he will spend just one night in the hospital for observation, but we will need to stay in a hotel in the Cincinnati area until October 3rd to be near the surgical team through a post-surgery risk period.
Last weekend I made fourteen freezer meals for Rich and the older boys for while I am gone. The cookbook claimed I could make all the meals in one day. It took me four from grocery shopping on day one until the last meal landed in the freezer on day four. That is probably why I do not write a cooking blog. Probably why I did not write any sort of blog last week. I am glad the project is finished. I am sad to be leaving my men for two weeks.
I have been told that a tonsillectomy can be painful. Anticipating the surgery and reflecting on Nathaniel's brief inpatient stay earlier this month, I felt he needed more language for medical experiences. Nathaniel does medical a lot. Since he can not protest vocally with "No," "Stop," or "It hurts," and does not even have an audible cry, it can be tempting for medical professionals to see him solely as an arm or a foot to stick a needle into. He signed two word utterances, "Mommy help!" "Daddy help!" repeatedly through getting an IV started at our recent Emergency Unit visit. Nobody heard him. Nobody except Rich and me even knew he was talking. A nonverbal child has no voice if no one notices his words and listens. By the way - the exclamation marks attached to Nathaniel's signing are my addition. The panic in his eyes convinced me that he would have been yelling our names if he could have.
So I asked his weekly speech therapist, Rebecca, where we might at least put OUCH on his talker.
Nathaniel had a previous arranged quarterly appointment Thursday with our Augmented Communication team at St. Louis Children's Hospital yesterday. We (Rebecca attends these meetings with us) brought my concerns to the team. They heard my advocating on Nathaniel's behalf. They agreed strongly that he needs to have a voice during doctor appointments, hospitalizations, and medical treatments. We spent time brainstorming as a team, and then Rebecca and I met again Friday to plan specific changes.
The Speak for Yourself app that Nathaniel uses for communication offers a number of blank second screens where one hundred twenty new spaces can hold vocabulary customized for individual users. While Speak for Yourself is almost entirely a single word based system, we utilized a blank screen to start a page of phrases for Nathaniel to use in medical situations. Our goal is to empower him and give him independence to be a participant in his medical experiences. If we wait until he has the language skills to put these phrases together word by word while in pain or panicked, he might continue to endure medical situations for years with no voice.
We started with sixteen phrases today and will add more as time goes on. Many of these phrases can be used across environments. "Let me see it," will be helpful in garage with Daddy's tools or on a nature walk when we find a frog. "I did it!" can be used when he puts a puzzle together or successfully climbs up a playground slide.
Building Nathaniel's talker language requires making foundational decisions about how he thinks. For example, we put TRACH and G-BUTTON with body parts rather than with medical. Nathaniel does not think categorically now, but someday he will. Rich and I want him to feel that his trach or g-button are normal body parts just like his eyes and toes.
Building Nathaniel's talker language also requires making foundational decisions about what we will allow him to say. If I do not program in words like SHUT UP, he can never say them. Every parent makes personal decisions on these matters. We will offer Nathaniel many language options and then teach him how to use words appropriately just as we did with our speaking children. So NO WAY! with a slight sarcastic intonation goes on the talker, and he might use it someday to give a doctor or nurse or a respiratory therapist (or a parent!) a little sass. I can not wait for the day when I get to say, "Nathaniel, do not say that in that tone of voice..." and redirect him to say NO, THANK YOU.
For the augmented communication users and speech therapists who follow my blog, here is a chart of the phrases we started with. The middle column offers the Smarty Symbol within the Speak for Yourself app that I selected to go with the phrase. The third column offers any additional explanations. Programing specifics are in brackets.
| Phrase | Smarty Symbol | Special Note |
|---|---|---|
| Will it hurt? | what are you thinking | |
| I need suctioned now! | suction | |
| Take it off now! | armband | use: blood pressure cuff, tape, IV's |
| What are you going to do? | what_02 | use: when a medical person approaches [phonetics for intonation: what r u goin to do?] |
| Ouch! | face hurt | |
| I don't feel good. | sad smiling face | |
| I want my Mommy! | photo of Mom | [same location as Mom on FAMILY screen] |
| I want my Daddy! | photo of Dad | [same location as Dad on FAMILY screen] |
| Really? Do you mean it? | question | use: when promised something won't hurt, etc [phonetics for intonation: really? do u meanit?] |
| I really need help! | caduceus medicine symbol_01 | [same location as help on home screen] |
| Yucky! | slimed | |
| I did it! | hooray | |
| Let me hold it. | mix with hands | |
| Let me see it. | eye gaze board | |
| No way! | no_03 | [same location as NO on main screen; red background] |
| I do it myself. | nickname | use: giving meds to his g-tube, pulling off tape, etc [same location as ME on main screen; light yellow background] |
Created with the HTML Table Generator
One additional way I have been preparing for our trip is to practice changing Nathaniel's trach ties alone. I remember two years ago when Nathaniel was new to us, a respiratory therapist at Ranken Jordan Pediatric Rehab Hospital said, "Someday, you'll be doing these by yourself." I did not believe her then, and I am amazed at how time has changed our comfort levels in caring for Nathaniel. Below is a video of how I change trach ties independently. Perhaps it will be useful to another family or EMS providers. I want to note that there is a second care giver in the room. Nathaniel is watching an Elmo show on an iPhone, thus the background music, and the second care giver is holding that phone and monitoring his hands. This is probably how we will need to do trach ties during our trip. I will try to get another blog posted before Nathaniel and I leave on Sunday with prayer requests, but do please pray for airway safety during this brief time daily when I change Nathaniel's ties.
Apologies for such a long post, but really, aren't you impressed? There was something for augmented communication users and something for trach parents and a lot of general update for the grandparents all mixed together in one post. Better than a cooking blog, right? Thanks for sharing in our journey!
