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.