Category Archives: The Claire Chronicles

A Shared Experience

 

Bob Goddard

It’s not uncommon for caregivers to say they were drawn to the field or that they were “born to do this work.” Others will tell you that life circumstances brought them to the job, but after some time as a caregiver they began to regard it as a calling. Probably both are true in different degrees in different people. But either way, I think the experience of caregiving incites something within our psyche that might otherwise remain dormant. It can change us.

The notion is supported by science. Psychologist Daniel Goleman, the author of Social Intelligence: the New Science of Human Relationships, tells us that person to person interactions literally shapes the human brain. The more important the relationship, the more profound the effect of those interactions upon the brain. When we help someone we care about, there is a psychoactive reaction in our brains that also connects with the circuitry that makes us feel good. We are biologically wired to learn to love and each experience expands our capacity for kindness and compassion.  Dr. Goleman says that the brain area that becomes stronger in this activity is the same area as a parent’s love for a child. We often hear caregivers talk about residents being like family members. This may be one reason why.

I’ve experienced this in my own life. Late last summer, following a speaking engagement at the Pioneer Network annual conference, I was ready was to devote myself full time to promoting this blog and our message. However, two months earlier, my granddaughter, Claire had been diagnosed with Agenesis of the Corpus Callosum (ACC), meaning that she had been born without the part of her brain that connects the two hemispheres. ACC is a developmental disorder that does not have a cure and treatment involves a lot of early intervention.  Soon after I got home from the conference, circumstances related to Claire’s treatment and care resulted in me becoming her primary caregiver during the day. I wasn’t planning on taking on this responsibility and I knew it would interfere with my work, but I couldn’t turn my back on my granddaughter when she needed me.

While I was initially motivated by a sense of family obligation, I soon realized that not only did I very much enjoyed my time with Claire, I found the experience quite fulfilling. I discovered that many of the skills and attitudes I developed in my years as a caregiver in LTC were applicable and I quickly became comfortable with this new responsibility. Soon I began working with the in-home therapists from the Early On program and learned about ways we could actively address the developmental challenges presented by Claire’s ACC. I knew that Claire will always have her struggles, but I was encouraged by the idea that we could do things here and now that would make a significant impact later in her life.

It makes sense to me that this transformation from a sense of obligation to experiencing emotional fulfillment to a desire to give more has something to do with Dr. Goleman’s psychoactive reaction. While there is little doubt that this process is enhanced by the expected grandparental bonding, it is quite possible that my daily interactions with Claire conditions my psyche in the same way an exercise regimen conditions the human body.

I believe there are certain universal truths that apply to any form of caregiving, whether it’s practiced within a family, within a facility, or in some other setting. And the first of these truths is that the relationship between the caregiver and care recipient can be a mutually beneficial experience. Under the right conditions, it’s an experience that has the power to change the lives of both parties.

Claire’s Chairs

 

 

Bob Goddard

One of the primary concerns in Claire’s early development is her tendency to rely on arching her back as a means of movement. Like any other infant, she has a natural impulse to move her body, but because of her ACC she is unable to easily perform more complex forms of movement that require coordinating her hips, legs, and arms, such as crawling or sitting up by herself. Her dependence on arching inhibits her gaining the strength, flexibility, and confidence required for these more refined movements. We must condition her not to pop into that backward extension.

One of the key elements in helping Claire overcome her “arch addiction” is posture training. The mantra here is 90-90-90: hips at 90 degrees, knees at 90 degrees, heels at 90 degrees. For this, we have a small arsenal of chairs at our disposal.

The most useful of the bunch is the corner chair:

Not only does the corner chair help Claire maintain the 90-90-90, it also provides support on each side. A tray fits over her lap, allowing her to manipulate and play with objects and enables us to engage with her without the necessity of us physically supporting her. The corner chair is comfortable and secure enough that she can spend up to an hour or more at time in it. Since Claire spends most of her time at home, we keep the corner chair at Hiliary’s house.

At our house we use the Lechy chair. This essentially works the same as the corner chair, but without the side supports. We have to make several modifications to make it work for Claire: we use a book to bring her small body forward in the chair so that her knees are at 90, an empty box for a platform to rest her feet, and a scarf loosely secured around her ankles to help keep her feet at or near the all-important 90. As with the corner chair, there is a tray for activities.

I also use what I simply call the “red chair.” Claire is secured in the red chair by vertical straps and a pommel. The floor serves as a platform for her feet. Unlike the corner chair and Lechy chair, I have to stay within arm’s reach of Claire while she’s in the red chair because she is quite capable of rocking it and there is a real potential for a pretty severe face plant. One advantage of the red chair is that there is zero pressure on her abdomen, so I actually prefer to use it after she eats. This is especially important given Claire’s problem with acid re-flux.

While the chairs serve a critical function, they are only a part of the program. The real strengthening comes from floor play, and from the habits and practices of her caregivers: how we carry her, hold her, and pick her up. I’ll talk about these in upcoming posts.

At some point, Claire will learn to sit up by herself and crawl and eventually walk. But the quality of these accomplishments will depend in large part on how well we can help strengthen and redirect her body now. And since it all works together, this will have a major impact on her cognitive, social and psychological development as well.

The Power of Peek-A-Boo

 

 

Bob Goddard

I play peek-a-boo with Claire every chance I get. In fact, it’s our default activity. When I can’t think of anything better to do or time is limited, we play peek-a-boo. And it never gets old for either one of us.

In the first place, it’s just fun. Peek-a-boo is an easy way to make Claire smile and laugh. Making my face “disappear” builds tension and its reappearance becomes the exciting resolution. Exaggerated facial and vocal expressions enhance the comedic and dramatic effect. It’s become like an inside joke between the two of us.

The game has a serious purpose. It teaches object permanence, the understanding that when things “disappear” they aren’t really gone forever. That is, things can be mentally represented even when we can’t see, hear, touch, smell, or taste them.

Object permanence begins to develop between 4-7 months. It is a precursor to symbolic understanding, a major building block for language skills and cognitive development. It’s a very big thing.

Claire and I work on object permanence in more direct ways as well. I present an interesting object:

… and then I hide it on her tray table under a screen, such as a small cloth. Her job is to remove the screen and retrieve the interesting object. If she’s not showing sufficient interest or motivation, the object, I expose part of the object.

Sometimes Claire finds the screen to be sufficiently interesting in itself and simply picks that up, mainly for chewing purposes, and ignores the original interesting object. One way I counteract that is to use my hand as the screen:

And it works thusly:

 

Another twist in object permanence training is to add a second layer of screening, such as placing a box over the object with a towel over the box.

Peek-a-boo can also evolve into more complex games. In one variation, the adult leaves the room all together and then reappears, or speaks to the child from the other room. This form of play can help ease separation anxiety.

But even in the most basic version with hands covering the face, there is a lot going on when we play peek-a-boo. According to child development professionals, peek-a-boo can help with things like developing self-recognition and teach cause and effect. And it is a form of social interaction. Combining this social aspect with the gross and fine motor activity associated with the game has a synergistic effect on development.  Experts tell us that symbolic understanding is a complex operation requiring the integration of a number of processes and as in any aspect of child development, it all works together.

Claire and I will continue to play this game every chance we get.  And I expect we will find new ways to play.