Tag Archives: treatment for ACC

My New Work Partner

 

 

Bob Goddard

In my last post I talked about the value of good work partners. For a caregiver employed in LTC, working with a good crew can make even the most difficult situations tolerable. A healthy and happy work environment isn’t really sustainable without making some effort to maintain a positive working relationship with your fellow caregivers.

In this job, you really do have to take care of the people around you. This includes an awareness of your coworkers’ needs and circumstances. Yes, we are there for the residents, but when we neglect or mistreat our work mates, we are poisoning our own work environment and this will inevitably impact the people who live there. I’ve known some aides that had some great qualities as caregivers, but couldn’t keep their mouths shut when it came to what they perceived as the inadequacies of other workers. Rather than simply dismiss fellow caregivers as unworthy of the work, how much more effective it would have been had they offered their assistance without judgement when they saw a need and perhaps through their actions provide a better example of how to approach the job.

In my current daily routine with Claire, I am blessed with a great work partner: my 4 ½ year-old granddaughter, Aubrey. From a caregiver’s perspective, Aubrey would be considered a part of my “case load.” Indeed, she does demand considerable time and attention – and she can be quite a distraction for Claire. But she also assists me in ways both big and small. In fact, when it comes to Claire’s care and training, she can do some things much better that I can.

Like my old work partner Russ at the Veterans’ Home, Aubrey is very familiar with our care routines and habits, and she knows when to jump in and help. Most of the time, she’ll do this without direction from me. If I’m involved in some task away from Claire and she gets fussy, Aubrey is right there to give her sister a pacifier or entertain her with a toy until I’m able to focus on Claire again.

Whenever I’m engaged in an activity with Claire, I always make sure that Aubrey has the opportunity to participate if she chooses. Just as Russ and I complemented each other with our differing approaches to our residents, Aubrey adds a quality to the activity that I am unable to provide. Claire simply has more fun and stays engaged longer if Aubrey joins us.

Of course, I often have to redirect to keep both girls on task, but I try to do this by example and not through verbal correction. Sometimes the structure of the activity breaks down entirely, overwhelmed by sisterly chaos and mirth. That’s okay, at that point, we just move on to something else.

When Aubrey chooses to occupy herself in parallel play, she can still be extremely helpful. In our effort to correct Claire’s dominant tendency to arch her back as a means of mobility, we do a lot of floor work in which we try to keep her focus forward. Sometimes this is simply a matter of sitting her on the floor, placing her favorite toys in front of her, and having her reach for them. If Aubrey is playing nearby, I always try to orient Claire toward her sister with the toys in between. To Claire, Aubrey is the most fascinating thing in the world and she’s more motivated to sustain her forward focus when her sister is in front of her.

Like any work partnership, this is a two-way street. One of Aubrey’s favorite activities is taking care of her babies. When I’m busy with Claire, Aubrey is busy with her “group.” This consists of one or usually several “Baby Alive” dolls, most of which are capable of some bodily function.


Aubrey takes her care activities very seriously and I am obligated to pay proper respect to her efforts and assist her when necessary. Sometimes this means I have to stop what I’m doing with Claire to help Aubrey put some article of clothing on one of the dolls or take a turn feeding one of them or perhaps help search for some microscopic toy part of critical importance. Other times, it can mean turning off the music and tip-toeing around the house, because it’s nap time for her babies.

Here, I was rightfully chastised for taking a photo that happened to show in the background her changing her baby  (“You DON”T do that!). I duly apologized for the indiscretion:

Clearly, it would be a mistake for me to dismiss Aubrey’s play concerns as frivolous. If I want her cooperation with what I do with Claire, then she should be able to depend on me to do the same for her group – whatever that may consist of from day to day. That is what good work partners do.

There is something else going on here. Aubrey will often use her babies to imitate my activities with Claire. She’s learning by watching and doing, developing skills that will serve her for a lifetime. In a very real sense, I’m training her as much as I’m training Claire. And while Aubrey does not yet grasp the meaning of Claire’s ACC, she is already learning some valuable lessons on how to treat it. As both girls grow, Aubrey will have more influence on her sister’s development than any of us.

In a couple months, I will be losing my valued work partner. Having recently graduated from preschool, Aubrey will be attending full-day kindergarten this fall. While this will leave me more time to work with Claire, I’m really going to miss my little work partner.

Claire

 

 

Bob Goddard

My granddaughter was born with a brain disorder called Agenesis of the Corpus Callosum (ACC). In short, she lacks the nerve fibers that connect the two sides of her brain and allows the two hemispheres to communicate. The absence of these fibers has an impact on every aspect of her development.

Claire will be a year old at the end of April. She’s about three months behind in most developmental milestones. For example, she is still unable to sit unsupported, a task usually accomplished at around 7 to 8 months. While she’s making progress, it’s been slow and uneven. On the plus side, Claire loves to interact with people, takes interest in the environment around her, and her sweet smile lights up the room wherever she goes.

ACC is a birth defect that has no single cause and has no cure. It can be accompanied by other genetic abnormalities or medical conditions, and is often misdiagnosed or undiagnosed altogether. However with the more common use of neuro-imaging techniques, such as MRI, there has been an increased rate of diagnosis. While ACC typically produces symptoms during the first two years of life, in mild cases discernible symptoms may not appear until later in life. In these cases the disorder presents primarily as a social deficit, such as difficulty in reading body language or understanding social cues.

We are not sure where Claire is going to end up in terms of her development. What we do know is that early diagnosis and intervention are key to treatment. So while there is no cure, we are not helpless and we know that what we do now can have a huge impact on the quality of her life later. While we cannot save Claire from the challenges presented by her deficit, we can minimize those challenges and equip her to better face them.

During the week, I am Claire’s primary care provider while her parents, my daughter Hiliary and son-in-law Andy, are working. After her maternity leave ran out, Hiliary tried other care arrangements for Claire, including a standard day care situation and then in-home care. But nothing worked. Claire was very difficult to feed and she was not growing. She was seriously at risk and there was even some talk of inserting a feeding tube. Since I was already watching their four-year old, our granddaughter Aubrey, in the afternoons after school, Hiliary asked if I could take Claire as well while they figured out what to do.

On CNA Edge, we’ve talked about how the skills and life lessons we’ve learned as caregivers in a long term care setting can be applicable to other aspects of our lives. My experience taking care of my granddaughters is a perfect and on-going example of that. I’ve always enjoyed spending time with my grandkids, but this is another level, particularly so given Claire’s needs. What I discovered is that not only am I capable of handling this new responsibility, I love doing it.

Much of how I experience a typical day with Claire and Aubrey parallels my thirty-five years’ experience in LTC. Those years conditioned me to be acutely aware of how time is used in a care situation: the need to organize it on the fly, to improvise and prioritize, to be efficient without being impatient, and to focus on the task at hand while simultaneously thinking ahead. This is crucial when it comes to Claire because I have to solve this daily time puzzle in a way that creates islands of time where I can focus specifically on her training.

Just as we sought to emotionally engage our elders in LTC during routine care tasks, I know that I must continually infuse the daily routine with habits that enhance Claire’s development. This includes simple things such holding her in my right arm instead of my left. Diaper change doubles as peek-a-boo time. Almost every mundane activity or movement is accompanied by a verbal cue: “light on,” “light off,” “down we go,” “uuuuup!”  This purposeful way of doing things requires a kind of multi-level multi-tasking, a skill common to seasoned LTC caregivers.

Also, while there is a sense of urgency here, my years as a LTC caregiver taught me how to pace myself emotionally, to be in it for the long haul. I know not to be too hard on myself when my energy fades or I lose focus, and I know there will be times when I will feel like I haven’t done all that should be possible. I know that a care routine can sometimes be a grind and that periods of discouragement and even boredom are natural – and that they are temporary. And last, but certainly not least, those thirty-five years have provided me with the awareness and expectation – and appreciation – of those singular moments which give meaning beyond the basic necessities of providing care and are so vital to sustaining one’s spirit. Of course, with my granddaughters, these moments come easy and often.

For the next several months, my posts on CNA Edge are going to be a combination of a chronicle of Claire’s progress, a look at ACC and child development, and an introspective relating what I am experiencing, not just as a grandfather, but also from a caregiver’s perspective. Already the experience has reinforced my belief that there are certain aspects of caregiving that are universal and that this wider definition may be of some use.