In my last post, I listed a selection of conditioning exercises I do with Claire during the day. These exercises address some of the developmental deficiencies associated with her ACC. The hope is that by doing these things now, we can avoid bigger problems as Claire grows.
Like a caregiver working in a long term care setting, my efforts are subject to the limitations – and the opportunities – presented by my work environment. While good caregivers strive to focus on the wants and needs of a resident as an individual, they must do so while accounting for things like the facility routine, the well-being of other residents on the unit, the concerns of family members, and the need to assist coworkers. One of the great disconnects in LTC is that regulations, policies, and training fail to adequately account for the environment in which they are to be implemented. Caregivers do not have that luxury and must learn to balance the needs of the individual with these other concerns.
While the venue is different, my work with Claire involves the same kind of balancing act. I would prefer to spend most of the day focusing on her developmental training, but the reality is that other matters limit the time I can devote to these exercises and I have to adjust accordingly. I think the best way to illustrate this is to share what our Tuesday was like last week.
On Tuesday mornings, Claire goes to physical therapy from 8 to 9. Her mother, my daughter Hiliary, takes Claire to these appointments while I take Claire’s sister, Aubrey, to preschool. After Claire’s appointment, Hiliary drops her off at my house and goes to work…
It is 9:30 now and Claire has been up since 6:30. She always needs a nap within a couple hours of waking. She often does not sleep well at night and these mid-morning naps are essential. And she’s obviously tired from her PT session. I would really like to work on some gross motor and strengthening exercises, but my first task is to change her diaper and get her down for a nap.
Claire wakes up at 11. I have to pick up Aubrey from school at 11:30, so we have to leave the house by 11:15. She was due for her bottle at 10:45, but that isn’t going to happen until we return home with Aubrey. I hold in her my arms and walk around for a moment or two, just to help her transition to being awake. I change her diaper and then go out and warm up the truck. It’s a cold and rainy day. Now it’s time to leave.
We return home with Aubs around 11:50. Claire is overdue for her bottle and that’s the first thing on the agenda. Meanwhile, Aubrey retrieves from the refrigerator a small lunch that I prepared for her when Claire was sleeping. As Claire takes her bottle, Aubrey and I talk about the things we did the day before and whatever else pops into her active little mind.
By 12:15 both girls are done eating. I place Claire in her bouncer and turn on PBS, hoping for an animated kid’s show to keep her occupied while I get Aubs ready for her swimming class held at the middle school pool. Super Y turns out to be sufficiently engaging. I wouldn’t mind sitting down and watching it myself. Another diaper change for Claire and we are out of the house by 12:30.
We get to the school by 12:45. I unload both girls and sign in at the school office. We scurry down the hallway toward the pool locker room, dodging several knots of loud and obnoxious middle schoolers along the way. It’s the last few minutes of lunch time and the chaos is palpable as the kids stream out of the cafeteria. I look down at Claire, still in her car seat. She’s smiling, clearly amused by the excessive animation of these strange and boisterous beings.
In the locker room Aubrey continues to entertain Claire by throwing her shoes and socks at me. I allow this. I take the girls into the pool area and we wait for the instructors and the rest of the students to arrive. Claire watches everyone, but is especially interested in the kids, who are all close to Aubrey’s age. As the teachers start the class, Claire and I retreat to the bleachers. The teachers ban family members from the pool deck during lessons to keep them from offering their unsolicited expertise.
I packed a number of toys to keep Claire busy during the lesson: her touch activated music maker, a small gang of Sesame Street figures for her chewing and tossing pleasure, a multi-function teething toy with mirror, and a stuffed Mickey Mouse that she has put through all the hell her little piranha like mouth can deliver. I take Claire out of her car seat and try a little object permanence exercise (more on this in the next post), but she isn’t interested. Freed from her cocoon, she now has an entire visual world to explore. The high ceiling and the lights in the pool room are captivating. The activity going on now in the pool is way more interesting than any object I might be hiding at that face towel.
The people around us in the bleachers are the most interesting things of all and she’s not shy about looking at them to get their attention. Her little head swivels back and forth, checking out everyone in her radius. An adult to the left of her is deep into his phone and doesn’t notice. Ditto for the mother on the right. Somehow they’re unaware of all this amazing stuff happening all around them.
It’s a strange and wonderful place that I’ve taken her to, but even with all that it has to offer, she becomes fussy after a time. It’s hot and humid in the pool room and I can tell she’s getting uncomfortable. I remove her socks and we leave the pool area. The hallway is pleasantly quiet now as the little heathens are safely sequestered in their classrooms. The cool air refreshes both of us and we spend some time checking out the shiny objects in the trophy case. She studies them for a moment, then turns her head toward me and smiles. Do I get how remarkable these things are? We wave at our reflection in the window of the deserted auditorium entrance. And we spend a little time gazing out the window toward the parking lot. All the while, Claire is content and engaged.
We slip back into the pool room just as Aubrey’s lesson is ending. I strap Claire into her car seat and we hustle back to the deck area to help Aubs wrap up in her towel. As we return to the locker room, Claire is visibly tired, but not yet fussing. She’ll probably fall asleep in the truck on the way home.
On the way home, the girls’ father, Andy, texts me that he just got out of work. This means I’ll be taking the girls to their house and I won’t get another chance to work on Claire’s exercises. My day with her is over.
A Good Day
While I was frustrated over not being able to work with Claire on Tuesday, I know that regarding her development, it was far from a wasted day. I had to remind myself that Claire’s day started with a physical therapy appointment. So while I didn’t work with her, someone else did. After her PT session, my job was to address her most immediate need and that was to get some rest.
While we didn’t have a solid block of time that we could devote to Claire’s training exercises, we were able to fit some things into the day’s activities. Following each of her diaper changes for example, we played peek-a-boo, which is actually an object permanence exercise. When we took our little walk in the school hallway, I made sure that she always had to look to her right to see the interesting stuff. Her weakness is on her right side and she has a strong tendency to look left. So in effect, this served as a kind of conditioning exercise. When I handed her one of the Sesame Street figures, I made her track them left to right and then reach up to her right to get them. And while I’m not sure exactly how all her social observation and interaction works in her development, I’m guessing the experience connected a synapse or two. All of this counts.
Once a week, Claire and I meet with an occupational therapist. She’s a really good one. She has over 30 years’ experience and is tremendously knowledgeable. But what I’m most impressed with is her ability to improvise with whatever items she finds on hand and alter equipment in order to meet Claire’s specific needs. I’ve worked with a lot OTR’s in the past and the great ones have always been master improvisers.
An experienced caregiver is also an improviser. But instead of improvising with things, we improvise with time. Even on the busiest days when other concerns dominate our time, we can find opportunities to address the individual needs of those in our care. The circumstances may not be ideal, but our efforts will make a difference.
And as a postscript to our Tuesday, Hiliary posted the following on Facebook that same night. So, it was a good day after all.