And Magaly, at Casa Jackson, is certainly a toddler. She has strong opinions, strong likes and dislikes, and a strong voice to tell her caregivers when she isn't pleased with them. With a diagnosis of microcephaly, it's difficult to predict where her cognition is currently, or what her full cognitive potential will be. At 27 months old, she displays delays in all developmental areas; microcephalic or not, this is to be expected of a child who has suffered for much of her short life from malnutrition and trauma.
I arrived at the center and, according to the day's routine, swept half of the children's rooms before beginning the fun part of the day, for everyone involved: playtime! Magaly had begun to wave at me while I swept; I promised her that as soon as I finished, we would go upstairs and play. She seemed to understand this, as she waited patiently for me to complete my task before resuming her usual, "ish? ish? ish! ish! ish!?" with her little arms lifted in my direction. As I approached her crib, she grinned her trademark impish grin and clapped her hands in excitement.
I carefully carried her upstairs to the playroom, which is well-padded with mats and blankets, and well-stocked with toys, books, and stuffed animals for infants and very young toddlers. I propped Magaly up, reclining on some blankets to avoid putting any pressure on her spine, and brought some blocks, books, a baby doll, and a xylophone over. The xylophone had lost its attached wand; I exclaimed, "Oh no! Where did it go?" and Magaly lifted her hands, palms up, eyebrows raised, using that typical toddler gesture for "I don't know!"
She displayed rather limited focus and switched between toys quickly, playing with each, discarding them, choosing another, discarding it, and returning to the first toy. This is understandable behavior when one considers that despite the efforts of the volunteers and caregivers, she does not have enough opportunities to just simply play. Anyone who has watched a two year old in a room full of toys (or boxes, or pans, or anything at all) knows that children have voracious appetites for playing, exploring, and interacting with their environments. Magaly is no exception; she is simply unable to do this consistently throughout her day. When not being held by a volunteer, she lays on her back in her crib, watching the volunteers move about the room and trying to wave one over to pick her up. When placed on a mat, she is unable to move about her environment, save for a creative little scoot movement she does by pushing into the ground with her toes- the only body parts below the hips that she is able to move independently at this time.
After some time playing with her most favorite toy (a baby doll, or "nene"), it was time to return to her crib for a diaper change. As I walked her through the adjacent room leading to the one she shares with Gricelda, Sandra, and Laura, she waved, upside down and still grinning, to the other volunteers walking around rocking the impossibly tiny infants that Casa Jackson is entrusted with. Her smile turned as soon as we reached her crib; after a diaper change (and a few moments of dodging her tiny fists swinging in protest), I brought her out of her crib again to sit with me in a rocking chair while the other children had their mid-morning bottles. We rocked together as I made silly animal sounds; Magaly gave a few quiet "meows," giggled at my horse's "neigh," and found the lion's "roar" completely dull and un-scary. She reached up several times to try and pull my mask down, and it occurred to me how confusing it must be for her to not be able to see the faces of the people taking care of her, without understanding why. Eyes may be the "window to the soul," but a nose and mouth certainly complete the view; also, for a child with delayed speech, actually seeing a mouth moving to make words can be incredibly helpful.
I sang the only Spanish children's song I know- the ABC's, remembered from my seventh grade Spanish class so very long ago. Magaly's eyes began to get heavy; her "ish"'s were fewer and less frequent, and her hand crept up to hold the neck of my lab coat. I rubbed her other arm and continued to sing. After about five minutes, her eyes fluttered and fell decisively shut. My first thought, relief at not having to put her into her crib crying and protesting, was followed by sadness that this was not an everyday experience for her. After several years spent discouraging parents from holding children until they fell asleep, undermining their abilities to learn to self-soothe, I have to humbly admit that I would gladly hold Magaly until she fell asleep for every nap and every bedtime, if I could. Falling asleep independently in one's own crib, in one's own home, with one's own parents nearby is one thing. Falling asleep independently in a room with three other toddlers, with the lights on and people buzzing about, and no prolonged snuggling, book-reading, and song-singing routine to comfort and soothe beforehand, is an entirely different experience.
After a few selfish minutes of cuddling, rocking, and wiping the tiny beads of sweat forming on her forehead, I put her down in her crib to finish out her nap, and went to Gricelda. She lay on her side, drooling, but with a bit of a smile. Seemingly oblivious to my presence until I touched her, she gave a little start as I picked her up. Another volunteer, Rafael (a nurse from Spain who intends to stay on until November), joined us in the playroom to learn techniques for stretching and positioning Gricelda. I struggled to explain to him what I was doing with Gricelda, what things I hoped to do with her, and the logic behind them. He was incredibly patient, and helped me find some of the simple medical words ('bone,' 'spasticity,' etc) I was looking for. We discussed the many challenges encountered when working with disabled children in developing countries; he had spent time volunteering in Peru as well, and we shared our experiences with disinterested nurses and tragically uneducated caregivers. As Gricelda laid in my lap and I began trying to stretch her limbs and determine exactly what sort of range she still had, she gave a few quiet protests but calmed eventually. She sat between my legs, a pillow on her lap, and even took a little weight through her forearms- a small step towards eventually getting her onto her stomach and bearing weight through her arms while prone. It's significantly more challenging, but significantly more beneficial. Rafa and I scheduled another 'co-visit' of sorts for the following morning, to continue our discussion and collaboration.
We transitioned back downstairs for lunchtime; despite her lack of motor control, spasticity, and incredibly decreased awareness of her surroundings, she is a slow but successful eater! She didn't display any tongue thrust, opened her mouth with some gentle coaxing, kept her tongue under the spoon, closed her mouth over the spoon and managed to swallow small mouthfuls with only minimal loss. It takes about twice as long to feed her as it may a typical child, but I felt a marked satisfaction in knowing that I had gotten almost the entire bowl of indistinguishable pureed vegetable into her (squash? pumpkin? sweet potato?), without force-feeding her, and even managed to encourage her to be a more active participant in her feeding by using techniques learned during my time working under a feeding specialist back home.
I'm in the very long, very slow process of uploading a brief video of both Magaly and Gricelda, and have put a Facebook album up with a few photos I took today. The money for this week's medical appointments for the girls has been covered (thank you to my former co-worker, Dona Savoie!); if anyone is interested in donating to a fund specifically for the girls' medical costs, please email me at AGridley@live.com.
Thanks for following along!
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