The Energizer Baby (well, toddler)

Every day, Sandra amazes me with the amount of hard work she does without even the slightest protest. For a little girl who had been away from her family and in residential care for malnutrition for the past 5 months, she is one of the most agreeable, cheerful, persistent little girls I've had the pleasure of working with. 

A large family group of volunteers visited Casa Jackson this morning along with the rest of us. The ratio of volunteer to baby was just about even, so every child got a lot of hugs, cuddles and loves. The only downside to this was that just about every single child was occupied all morning long, leaving me with a very limited selection of children to work with. And by limited, I mean only Sandra (who I was bathing when the family arrived and selected their babies for the day). While I wanted to work with a number of children this morning, I would be lying if I said I didn't enjoy our four hours of quality time together.

I have seen so much progress in Sandra since I've returned. It feels as if every day there is something new and exciting that I see emerging in her. I put Sandra in side-sitting for the first time today and helped to extend and stabilize one of her arms and encourage her to shift her weight over it a bit. She surprised me by not just activating her muscles to really work at holding herself up, but doing so while maintaining good head control for about 15 seconds several times. This was a huge challenge for her, and one that I was trying on a whim. But she really held her own! I bent her elbow a few times to see if it was just extensor tone keeping her arm straight, but no. She was really using those little muscles of hers. I was even able to let go a few times!

Along with the strength she is clearly developing, she is making progress in other areas as well. She has been much more consistent in her imitation of different sounds; while each utterance requires a lot of effort and time on Sandra's part (and patience on mine!), she has begun to make the "B" and "M" sounds. These are a challenge for her as she struggles with lip closure. She was especially motived to make the "B" sound to ask for "burbujas" (bubbles), which she finds absolutely thriling. The "M" sound has been most consistent when she tries to say, "Te AMO!" back to me. 

Sandra's attempts to communicate vocally have increased in frequency, as well. It's often difficult to tease out whether or not she's just vocalizing or making certain sounds to communicate a specific thought, but there are several things I've seen her do consistently over the course of several days:

1. When I go to her crib and take the side down to "free" her, if it is the first time she has seen me that day, she grins, giggles, and says "Aaaooh!"I give her kisses (through the mask, of course), tickle her, and say "Te amo, chiquita!" to which she replies again, "Aaaooh!" 

2. I often lay her down in her crib or on the mat and cover her face with mask-kisses and say in a silly voice, "Besitos besitos besitos besitoooos!" (kisses). When I do this, she opens her mouth and turns to me to give kisses back, and when I lean back away, she gets excited and begins to put her lips together and try to make a "B" sound. She's still getting a hang of this one, so it usually ends up sounding like an incredibly soft "P." 

3. When I mention eating, or read her a book that involves any character that eats, I make the "um-yum-yum-yum-yum" sound. She begins to bring her lips together and tries to make a sound. It ends up sounding like a soft "V," but again- it's a great start and a great effort on her part!

4. Sometimes between exercises or activities I give her kisses (I give this kid a LOT of kisses, I know!) and say "Te ahhhmmmmo!" and really enunciate and drag out the "M"sound. After I do this a few times, she begins to try the "M" sound as well.

5. If I say to her, "Sandrita, hablame!" (Sandra, talk to me!), she DOES. She opens her little mouth and vocalizes. Usually it's "Aaaooh" and a big grin and giggle. 

6. She is now answering "yes" in her own way by responding to my questions with a vocalization. For example, when I ask her, "Quieres cantar?" (Want to sing?) she vocalizes back to me and smiles to initiate it. 

7. When blowing bubbles, she REALLY tried for that "B" sound- and came close a few times. It takes her a bit to get her mouth closed, but that soft "B" is emerging!

Needless to say, this makes our time together even MORE fun. We work hard, we play hard, and she is really beginning to engage more actively now. So many kids with significant physical disabilities can fall into that hanging-in-the-background category. Kids for whom everything is a challenge can be very difficult to motivate, because any participation is hard. Especially for a little girl in the environment that she's in, the more actively she can engage with the people caring for her, the better- the squeaky wheels get the grease!

Sandra also did a lot of nice reaching today. She reached up to put her hands in my hands while lying on her back to make me "dance" her arms around to the music that was playing. As with everything, she needed a lot of time to get those little arms out, up, and to the middle to put them in mine- but she did it (at least five times)! I moved my hands around (both together, to really test those skills of hers) and while she had the expected difficulty reaching across the middle, she was really trying. 

I also had a nice moment with Esvin- he actually played with a toy with me for about a minute. I had propped him up in the corner of his crib so that he could sit and let gravity stretch those very tight inner thigh muscles of his, and put a noise-making toy on his lap. I took his hand and played with the toy for a bit, talking and singing to him. When I took my hand away, he looked at the toy, looked back to me, and continued moving the lever up and down to make the sound. It sort of fell apart when I tried to put both his hands on the toy to play (using those two hands together is not his favorite pasttime) but I was thrilled to have had the few moments of real engagement.

I've continued working on the script for  and am working on a short flowchart for the staff and volunteers at Casa Jackson to help them understand what sorts of activities to do with kids based on their current skill level (can they hold their head up, roll over, sit up, etc). It's a bit tricky, but I think it'll be a helpful tool when it's completed. Fingers crossed! 

Hanging With Some Cute Little Ragamuffins

There are a number of young students from the Dreamer Center who drop by the downstairs office and hang out between classes and after school. As I've been spending my non-Casa Jackson time in this office writing things up, I have made a whole lot of new friends this week. They're cute, they're friendly, and some of them are downright hustlers. Considering the places that many of them are from, it's understandable. One little girl, Feliciana, has tried a new tactic on me every day. One day, she didn't have money for the bus, and wouldn't be able to go home (doubtful that an organization that puts such effort into caring for their students would forget to get them home safely). The next day she insisted she wouldn't be able to eat lunch since she didn't have any money (breakfast, lunch, and snacks are provided). The day after that, she just straight up told me she didn't have any dinero.

The plus-side to these raggedy (and sometimes smelly) little visitors is that I get to practice a whole lot of my Spanish, and ask a lot of personal questions to Guatemalans who are happy to answer them. From what I've gathered, most of them have at least 3 brothers or sisters (the most I've heard so far has been 8), live at least a half hour's bus ride outside of Antigua (the longer the ride, the more destitute the area, generally speaking), and don't really do much of anything worth mentioning after school. I've tried open-ended questions and I've tried specific ones, but the consensus seems to be that there isn't anything interesting going on beyond hanging with siblings. Which can certainly be fun in and of itself. But it's a far cry from conversations with kids at home, where their answers can include but are not limited to, "baseball/softball/karate/ballet/tap/jazz/soccer/art/music lessons..."

They are also a very touchy crowd. Girls and boys alike want to touch your hair, hold your hand, sidle up thisclose to you and basically just be almost on top of you for the duration of your conversation. Kids in general aren't known for their sense of personal space and boundaries, so I think this is a combination of age and culture. Also, I'm pretty sure they're just plain fond of us gringos.

One little girl that I met today, Mercedes, is 11 years old. I had heard her story in January at a talk that Luke (Ray's roommate and the educational director of Nuestros Ahijados) gave, but hadn't yet met her. Her story, like that of SO many kids here, was touching and sad.

Mercedes and her two sisters were living near one of the many dumps that is home to thousands throughout Guatemala. Entire families eke out a living picking through the dumps, finding scrap metal and items that can be redeemed for money, and anything else potentially useful to whoever is paying them to scrounge around in it. Many children are "hired out" by their parents to do this job; someone pays the child's parents and then the child works in the dump all day looking for whatever sorts of things they've been tasked to find. Doing this in any dump would be a nightmare, but in Guatemala, where there are no safety regulations or recommendations regarding what can be thrown away where, the children are coming into contact with toxic substances, inhaling toxic fumes, and touching the rotting garbage of thousands of people.

Mercedes and her sisters were brought to Nuestros Ahijados, after the staff convinced their parents that school was a better place for them. The girls were given clothes, school supplies, and everything else they needed to begin attending. They attended for a brief time, then abruptly stopped coming. Someone from the project was tasked to find them. They didn't have to look very hard. The girls were back picking through the dump. The oldest sister had left the dump and was working as a prostitute. After much coaxing and cajoling, they were able to learn the reason the girls had stopped coming.

Another child had teased one of the sisters about her shoes being old.

At home, we always lament the negative impact that being teased can have on a child. The pain, the low self-esteem, the long-lasting insecurities that many people carry with them into adulthood. But for this girl, being teased very nearly set the course of her life. If Nuestros Ahijados had not tracked them down and convinced them to very reluctantly return, she would have no chance at life beyond picking through the dump or walking the streets and selling her body.

Knowing her story makes it far easier to understand and accept that she's a notorious pickpocket. For a child who has known only filth and poverty, to come to a place like this where there are offices full of things and people with money, cameras, phones and whatnot in their pockets and purses, it's frustrating but understandable that one would try and scoff some things. It isn't right, it isn't acceptable, and it isn't ignored. Despite the fact that the kids are given so much here, they are returning to homes and communities which are a far cry from the clean, safe, lush grounds here.

While we can think all we want, "But we've given then so much! Don't they appreciate that?", for a child who has known only the instability of poverty, there remains an incredible instinct to take what you can, when you can, because... you never know when you'll have nothing again.

The Land of Opportunity...

is where I feel I've landed. There are so many different wonderful possibilities here that keep revealing themselves, and so many potential ways to help. I am seeing now that this planning is going to be a very ongoing process; every time I think I've figured out what I'm going to do, more details come about and complicate the plan (in a good way).

I was speaking to a fellow volunteer at Nuestros Ahijados about the work I'm trying to do at Casa Jackson. This volunteer, Salina, had volunteered for one month at Hermano San Pedro, the school/residential hospital nearby for children with special needs. Salina was able to explain their program to me. Apparently, the children at the hospital are those whose parents are unable to care for them at home. The children live at HSP for 10 months out of the year and spend one month at home during the summer, and one month during the winter holidays. The students at the HSP school are picked up and dropped off by their parents and spend only the school day there.

HSP does not, to her knowledge, offer any support or educational to parents regarding how to care for their children at home. Salina reported that she had met several parents who were incredibly distraught and heartbroken to have to leave their children at HSP, but simply didn't know how to care for them at home. Additionally, she reported that many children will return from their breaks at home having lost a great deal of weight because HSP is bottle-feeding them, and the parents are unaware of this and try to feed them regular table food. Basically, there seems to be a real disconnect between the services the kids are getting at the HSP school/hospital, and the families. There are a number of families who very much want to learn how to help their children in some way, but don't have anywhere to get that type of support from.

I was obviously chomping at the bit by the end of this conversation. Salina visits Hermano San Pedro just about every week and offered to take me with her on her next visit so I can meet the staff and their long-term (8 years and counting!) volunteer Leslie. Fortunately, Leslie speaks fluent English and Spanish, and can help me to float the idea of offering some basic education and home visits to the families that so desperately want it.

Another volunteer, Maura, had informed Corinne that she wanted to begin organizing Saturday morning workshops for the mothers (past and present) of children at Casa Jackson. Each workshop would provide some basic information/education to the mothers about a particular subject. Maura's interest was in hygiene and disease prevention. Corinne brought up the wonderful idea of presenting several topics in each Saturday workshop, and covering some basic information from each. There is a clear opportunity to piggy-back onto these workshops and provide some information about helping children develop as best they can. I am unsure of the timeline for these workshops, but hopefully they will be happening. It would be nice to have another way to provide some support without having to set up a whole new way to get it to families.

We've also finally gotten the ball rolling on an instructional video for volunteers and staff! It will be available online so that it is accessible at any time. The video will be relatively short, and will include information on how to support the development of both children with and without disabilities. Topics covered (demonstrations that I will narrate and explain what I am doing and why) include tummy time, feeding, positioning, and how to properly stretch and handle children with physical disabilities. We will be filming it very soon. It will likely include a lot of Sandra (as the resident "classic CP" kiddo), some Esvin, possibly Mayra, and Alison. Be prepared for unparalleled cuteness!

Casa Jackson: Round Two!

The six scant hours of sleep I had Tuesday night left me tired Wednesday morning, but not tired enough to delay my return to Casa Jackson. I had determined that I was going to be there Wednesday morning at 8:30am, and be there I was. I had spoken with Andrea, the Casa Jackson volunteer coordinator, who had informed me that while Gricelda had gone home, Magaly and Sandra remained, and a number of other children with significant special needs had come to join them. My 'caseload' would be significantly larger this time around, and I was terribly excited to meet the little faces I would be working with and for.

And yes, I was absolutely ecstatic to see my little Sandra again. When I arrived at Casa Jackson, I made a beeline for her crib. With my completely different (now blonde) hair, I was worried she may not recognize me. 

I stood over her crib and watched her wake up, her little arms and legs stiffening in a stretch and her eyes fluttering. I dropped the side of the crib and put my hand on her cheek. She gave me a sleepy smile. I began to speak to her. "Hola, mama. Sandrita, mi chica linda, mi chiquita bonita, mi amor, que paso mami?" Her smile began to widen and I pulled my mask down from my face. "Sandrita, es mio. Yo regresaba para ti. Te amo, mi chiquita. Te amo!" (For you non-Spanish speakers, loosely translated: "Hi Sandra, my pretty girl, my little cutie, my love, what's up?.. Sandra, it's me. I came back to see you. I love you, my little one. I love you!")

I can't guarantee that Sandra was not just excited to be woken up by a friendly volunteer; that she wasn't just being her usual, happy self. But I don't believe that was the case. As I spoke to her and pulled the mask down, she erupted into giggles, grinned, and cooed several times, "aaahhhoooo" (the sound she used to imitate my "te amo"s with in January). I picked her up from her crib and she snuggled right into me (cue Peaches and Herb "Reunited").

We had a wonderful morning. Sandra has gotten stronger! Her head control is still pretty poor, but she has made definite progress. In January, she was unable to hold her head up for more than 10 to 15 seconds at a time consistently. Now, when placed on her tummy with a blanket rolled up beneath her arms to help her prop on her forearms, she holds her head up and looks around for over a minute, consistently, before dropping it back down. She is reaching with her arms and hands more often and with slightly more control, and needs a little less support to sit up. She even pushed up on long arms once! For the non-therapist crowd, that means that she pushed herself up off of the floor by extending her elbows. This may not seem like a huge step, but it is very hard work for a little girl with such significant physical impairments. 

This progress has been made possible by the wonderful Rafa, the male nurse from Spain who has been volunteering at Casa Jackson since December and will continue through to October. During my stint in January, Rafa was very interested in everything I was doing, and eager to learn what he could do to help Sandra continue making the gains he was seeing us accomplish together. Rafa is a great advocate for the children at Casa Jackson. He is a native Spanish speaker, he's male, he's older, and he's a nurse. This combination of attributes seems to garner him a bit more respect from the local nurses, who are mostly young and female. Rafa is also a wonderful intermediary and advocate for me and my efforts there, and is incredibly gracious and vocal in his support of my suggestions.  

Rafa reports that he has been getting Sandra out of her crib everyday and placing her on her tummy on the mat in the central playroom. Sandra enjoys being "part of the action." She is able to pick her head up, look around, and watch the nurses come and go with bottles and diapers and laundry; she is able to see her other little friends coming and going in the nurses arms and 'talk' to the children sitting on the mat alongside her. This is a perfect example of the tiny change that makes a huge difference. By changing the position and environment that Sandra is left in for an hour every day, and making it a part of her daily routine, she is deriving massive benefits. Her extensor muscles, initially so weak from laying flat on her back for hours each day, are growing stronger and stronger. She is in a more stimulating environment. She is hearing more, seeing more, interacting more. When she holds her head upright, she is developing the muscles in her eyes in a different way than when she lays on her back. For the benefit to visual-motor development alone, altering her position is invaluable. The bottom line is this: a small change has been made to Sandra's daily routine, and it is yielding a great benefit.

In addition to Sandra, there is a sweet eleven year old boy named Esvin, who is very funky. Seems a bit PDD-ish, but globally delayed. Incredibly sweet and snuggly, regardless. There is little Mayra, who is seven months old and spends her day alternating between seizures (she has infantile spasms) and sleep. She is incredibly rigid for most of the day due to the extensor tone that occurs with her seizures. There is Alison, who is stick-thin and incredibly weak. In fact, there seem to be a lot of slightly older (12-18 months) babies who are shockingly thin. Folds of skin hang off of their little bottoms and upper thighs where their baby fat ought to be. Their heads look massive, their eyes bulge, and they are impossibly frail. Several of them appear near death. The top priority is to get them fed and healthy again, but when they are ready, they will also need a lot of help to gain strength to move. These are little children who can barely lift their arm up from the mattress because they are so weak.

The twins are bigger and healthier, although one of them has taken to holding her breath until she turns black and passes out. However, there is good news- her mother actually survived the ordeal of childbirth. When their grandfather brought them here, he was sure she was dying. They could not afford a doctor, and she was barely hanging on. She is healthier now and comes from eight hours away to visit her babies, who she will bring home when they are ready. I am sure the family that was slated to adopt them is sad, but it is a beautiful thing to know that these babies we thought had lost their mother will be able to grow up in her care.

Thursday I sat out due to a horrible cold that had been brewing since take-off in Boston, and Friday was unfortunately filled with vomit, diarrhea, and a whole lot of crying. There was a shortage of volunteers and unfortunately, very little happened beyond triaging the babies' immediate needs (bottles, diapers, etc). Little Sandra was the first to fall ill. All over my shirt, pants, and sandaled feet. I spent the morning holding her and comforting her. She arched her back every five minutes or so and cried out in pain. Whenever I spoke to her, she replied with a cry. I could have killed the nurse that kept trying to shove the bottle in her mouth all morning long; each time it touched Sandra's lips, she gagged and wretched. Eventually I convinced her that it was fruitless and the effort was abandoned. The afternoon was spent running from baby to baby with the one other volunteer, who was a physical therapist from England who had some very interesting stories from traveling in Syria, Lebanon, and Libya.

The planning has gotten underway, although it's a challenge still! I am beginning to think that the only way to really formulate a definite plan is to just make the move down here. There are so many directions to go in; between Casa Jackson, and the new possibilities that may be opening up at the school for children with disabilities nearby, Hermano San Pedro, there are even more opportunities to develop a real special needs program down here.

Off to Casa Jackson for the afternoon... More on those opportunities after I finish the day's baby snuggling and therapizing!

2 Months Later, A Joyful Return!

When I left Antigua in January, as most know, I was buoyant and excited about the possibilities ahead. I brainstormed, I strategized, I planned; I let my hopes rise unabashedly, and I determined that no matter what happened, no matter what roadblocks arose, I was going to make this project I had conceived a reality.

When I came home, I threw myself into the task as much as I could, given the lack of concrete information I had regarding how exactly to implement my plan successfully within the existing Nuestros Ahijados framework. It has been a challenge to plan an "idea." It was that challenge that really solidified my resolve to return to Guatemala again before I make the "big move" out of the US. Obviously, another visit to a place I've grown to love wouldn't be a chore, but financially, it was difficult to justify unless it was necessary to the success of the project. I realized that without an understanding of the details and minutiae, it was going to be damn near impossible to formulate any sort of plan; to prepare the materials I needed; to ask people to contribute to an "idea."

Two months later, here I sit, chatting with Corinne (the volunteer coordinator) and the various staff that wander in and out of the office throughout the morning, on my laptop, sipping my coffee, and reflecting on the hectic week I've had since returning this past Tuesday. The sun is shining, the birds are chirping, and Lady Gaga's "Pokerface" is blaring through the courtyard, bass thumping, in between presenters in the Dreamer Center (school)'s morning meeting. Welcome back, indeed.

The flights in were uneventful, save for the increased security measures to board the plane. There were two border patrol agents stopping every passenger in the middle of the boarding hallway (I'm sure there is a technical term for it, but I'm not aware of it), asking how much cash they were carrying, randomly searching people, and giving a very withering stare to each passenger before giving a terse, "Go. Board." Apparently there are some issues with large quantities of money being moved through Guatemala related to the drug/gang economy. Other than that, my layover in Houston was tolerable, and although the Continental stewardesses were possibly the rudest and most unpleasant I've ever encountered in the past few years of frequent flying, my landing in Guatemala was as pleasant as can be. The airport taxi driver brought me as far as downtown Antigua before informing me that he didn't actually know where Jocotenango was, and asking me for directions. After a wrong turn that took us to Casa Jackson (the turn looked familiar for a reason!), I arrived safely at Ray and Luke's. Home sweet home.

The past week has been filled with various mini-reunions with the Nuestros Ahijados staff (most of whom didn't recognize me with my blonde hair), many pounds of delicious street food from the many street fairs taking place due to the impending Santa Semana (holy week before Easter), many cervezas among friends, sunshine, hammocks, and parties. It has been a wonderful welcome. It almost feels like I never left...

More on street food, as eating it is one of my favorite Guatemalan past times. For the uninitiated, street food is served from small carts on the street equipped with griddles, deep fryers, and various boilers- whatever is necessary to make the food being served. There are tacos (3 for 10 quetzales, roughly $1.10); pupusas (thick tortillas with cheese folded into the dough in the middle, fried up on the griddle and topped with guacamole, salsa, choice of meat, shredded cabbage and vegetables, and jalapenos, 4Q or $0.50 each), empanadas filled with various meats, vegetables, plantains, frijoles, etc; mashed potatoes and vegetables rolled into a tortilla and deep fried like a taquito and topped with- you guessed it- guacamole and your choice of the above mentioned toppings; fried plantains; churros topped with sugar and cinnamon; papayas and mangos sliced up and mounted on a stick, almost like a lollipop (another 4Q treat!); chocolate dipped strawberries; arroz con leche (sort of like drinkable rice pudding with cinnamon on top).... Ahhh, street food. It should come as no surprise to many of you that I ate all of the above yesterday afternoon. :)

It has been fun, but it has not been all fun and games. For the sake of the eyes of the kind people who are following this adventure, I am breaking this post up into personal, and project-related.

Next up: The Return to Casa J...