Tag Archives: ACC

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.

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.

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.

Do What You Can, With What You Have


 

Bob Goddard

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…

Our Tuesday

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.

https://www.facebook.com/hiliary.goddarddykstra/posts/1692208354177393

Claire’s Training Exercises

 

Bob Goddard

As I shared in my last post, our granddaughter, Claire, was born without the fibers that connect the two sides of her brain. This birth defect, called Agenesis of the Corpus Callosum (ACC), has resulted in delays in all major categories of Claire’s development.

For the past few months, we’ve been meeting every Friday with an Occupational Therapist from a program called Early On.  During these in-home sessions, we track Claire progress and work with her on developing her gross motor, fine motor, cognitive, and social skills. In the process, the OTR has instructed us in a number of training exercises that address Claire’s deficits. This early training is crucial in Claire’s treatment and it could have a significant impact on the quality of her life. I’ll have more to say about the Early On program in future posts.

For now, I simply want to list some of the exercises we’ve been doing, just to provide an idea what of the training involves. Claire is weak on her right side and she has a tendency to arch her back as means of movement. If not addressed, these issues could result in major physical problems down the road and much of what we do is to correct them. We don’t do all of these every single day, but we do try to fit in as much as Claire can tolerate and the day allows. Right now, I do not fully grasp how these exercises work as whole, but this is something I hope to learn and I’ll share what I discover going forward.

The following mostly involve gross motor functions and I’ll cover other kinds of exercises in future posts. Also, in the coming months I hope to have more photos and videos to help illustrate our efforts. I made up the names of many of the specific exercises, just so they’re easier for me to remember.

1.       Overhead Reacher: we place Claire on her back with the toys suspended directly over her face as shown below. This encourages her to reach upward with both arms and thus helps in developing her pectoral muscles. She tends to squirm out of position, so our role is basically to adjust as necessary.

2.       The 360: while Claire lays on her stomach, we rock her hips back and forth with an emphasis on flexing her hip on the side she is reaching and moving towards. We place toys in the direction toward which she is pivoting and encourage her to reach for them. We do a full circle in both directions.

3.       The 45: while either sitting on the floor or standing, we hold Claire at a 45 degree angle with her head on our left and facing out. It can also be done standing. This helps strengthens the muscles on her right side.

4.       Just Sitting: while we sit on the floor, we place Claire on her rear, directly in front of us, either facing toward us or away. We use one of our hands to anchor her where her upper thigh meets her hip and we use the other hand to keep her from flopping to one side or the other. We place toys directly in front of her to keep her focus and balance forward, and to discourage arching.

5.       To the Floor: instead of placing Claire directly on the floor, we sit with her in our lap on her belly and transition her to the floor over the outside leg and allow her to reach her hands to the floor and encourage her to “walk” on her hands forward until her entire body is on the floor. This is a kind of simulated crawling and gets her accustomed to using her arms and hands for mobility. 

6.       Rolling: just what the name implies, rolling from her stomach to her back and vice versa. We practice more to the right side. We also discourage back arching as a means to turn over. We place toys (and interesting people!) in positions that draw her attention toward her trunk area and thus encourage her to keep her chin tucked when she rolls.  

7.       Side Hold: while lying on the floor on her side, especially her right side, we place a hand on her hip and prevent her from turning either way. As in rolling, we encourage her to keep her chin tucked.

8.       Toys on Toes: while lying her back, we dangle toys on her feet and thus she performs a kind of “crunches” exercise when reaching for them.

9.       The Red Chair: as shown below, we place Claire in the chair, sitting at 90 degree angle and play games with her. One of the ideas here is to get her accustomed to the sensation of having her feet on the floor. In the coming weeks we hope to replace the red chair with a pediatric corner chair that will help with Claire’s postural control of her head, neck and trunk. This chair comes with a tray so that she’ll be able to engage in other activities while sitting in it.  

In all of this, we watch for progress and not developmental deadlines. The antidote to discouragement is action and so we focus on the day to day routine and let the big picture take care of itself.

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.