The ministry that we have started is called, “CadaNino” which generally means each child. We chose the name because we believe that God values and loves each and every child. We believe that every child is worthy and needs individualized love and attention. CadaNino is the US based organization that supports our work here in Guatemala at the government run residential center, “Centro Residencial Neurologico y Psiqiuiatrico” or CRPN. Currently, Cadanino has retained a physical therapist and two nurses aides to work physical therapies with the children of the center.
CRPN- is owned and operated by the Guatemalan Government. Their version of human services, Bienestar Social, is the operating entity that funds and manages CRPN and several other similar centers. CRPN is a mix of psychiatric hospital and orphanage for profoundly developmentally challenged people. There are currently 52 residents ranging from 6 years of age to 46 years old. Approximately half of them require extensive psychiatric and neurological medications. A little more than half the residents also wear adult diapers. The intellectual impairments range from downs syndrome to low intelligence from birth defects and malnutrition. Many resident suffer from a wide range of epilepsy and autism. Less than 10% of the residents have a family member who is able to visit them. Several of the residents have little biographical history on file; many people have only approximate birthdays and birth years. CadaNino staff of 3 (plus jkw sometimes) are technically volunteers to the center. Though our ministry is explicitly Christian, we are non-sectarian and non-denominational in our initiatives.
Our objective is to be of help where the government resources may not be currently available. Also, we attempt to have candid discussions with senior directors of CRPN about our desire to not expand our role beyond the limited project. Currently, the government of Guatemala has done an excellent job managing and improving the quality of care for the residents. In the past seven months there are significant improvements in the areas of nutrition, medicine and education. The initiative has focused on the developmental needs of the four children that have been living in the infirmary. They are complete invalids and are not able to live within the general population. They are Anahi -6, Ingrid-9, Susi-12 and Angel-13. With seven months of physical therapy the younger children, Anahi and Ingrid have started crawling and are able to put food in their mouths about 50% of the time. Susi and Angel have much more profound challenges and we have been happy with some movement and improved muscle tone. The known abuse of these children prior to their arrival in the institution is mind boggling. The fact that a couple of them lived through early childhood illnesses is quite amazing. CRPN is nearing completion of a new wing for the center. The new section will house the woman’s dormitory and bathroom. It will also provide a room for physical therapy and an office to the psychologist.
We have been using the therapy room with temporary carpets and the results for the four aforementioned kids is phenomenal. The ability to play,crawl or roll around on the floor is a vast improvement over the continuous restrictions of their beds and wheelchairs. The past seven months have required flexibility and creativity. The Director of CRPN, Celadonio Soto, has become a good friend and is thoughtful about the appropriate level of participation for our ministry. He cares a great deal about the kids and is realistic about what they can expect in the way of government support. To be clear, the small project that we have in place is nothing compared to the economics and management of a 50 bed hospital like setting. The cost and logistics of food and medicine (to say nothing of expensive adult disposable diapers) is enormous. I describe the government support as, “three hots and a cot.” That is to say that they are well cared for in the basic needs of nourishment and shelter, but that some of their personal individual growth opportunities may not be fully recognized.
I’d like to briefly profile the clinic kids – Anahi is the youngest and she is adorable. We believe her father is also her Grandfather. Let that thought sink in for a few moments. She is 6 years old and has profound autism and limited neuromuscular development. Because she is young, she seems to be physically strongest. She is able to crawl and stand up in her crib. With an adorable face and beautiful eyes, she has a nasty scar across her forehead which is presumed to be related to the type of autism where she rocks incessantly back and forth and will hit her head against walls or any hard surfaces.
Ingrid is 9 years old and has progressed well also. Her arms and legs are severely curved near the hands and feet as the result of fractures in infancy. The fracture bones were never set and thus the bone increased and grew, but with a warp. One leg is also significantly shorter than the other because it was also fractured at the thigh. She was misdiagnosed with osteo-imperfecta which is essentially a fragile bone syndrome. She arrived at the center two years ago, severely malnourished and absolutely unable to use her limbs and hands for anything. In addition to the good food they provide her, she was consuming a good amount of high protein infant formula and is now at full weight for her height. Because her hands are of little use, she has become overly accustomed to retrieving sustenance through the bottle and we are weaning her from the bottle now at 9! A lack of stimulation and education has left her eye hand motor control to that of a 4 month old child. I believe that her eye hand coordination is improving and that within a reasonable period she will be able to feed herself.
The older two children are amazing cases as well. Susi has a smile that melts my heart and captivates all who see her. Her facial expressions are the only thing she is able to use to communicate. She arrived at CRPN a year ago weighing only 20 pounds at 11 years of age. Her legs and arms were in a semi permanent fetal position and of little use. Apparently, a grandmother had tried to take care of her because her prostitute mother was unable to provide for her. Susi’s very low brain function keeps her from being able to swallow any food or chew anything. All food needs to be liquefied for her and then slowly poured down her throat with little help from her swallow mechanism. Meals are slow and messy. Nevertheless, her weight has doubled this past year and she continues to make huge strides in physical therapy. She can hold her head up for 30 seconds unassisted and can roll over on flat surfaces. She also has a severe curvature of the spine that has delayed the development of one of her lungs. Part of the difficulty in feeding her is that liquids tend to get coughed up because of the stomach lung connection (how’s that for a non-medical non-scientific observation).
The oldest child is Angel and he is perhaps the most enigmatic. He appears to be far deeper in his autism and low intelligence. We don’t know much about him except that he was apparently severely abused for much of his childhood. He has scars all over his torso and the nurses indicate that his anal sphincter has signs of sexual abuse. He has little interest in food or activities, but is improved since he was put on an anti-depressant that stimulates his appetite. He is quite tall, but shows little desire to use his extremities.
The other 48 residents are fascinating and special children as well. Each one touches my heart and is worthy of God’s love. I have been appreciative of the time that I have had to get to know people individually. There are several people on staff that have become close personal friends. They are saints and heroes to me. The average salary for most of the nurses aides (neneras) is about $200 a month. Many of them are single head of household parents. They are also an important part of our ministry. My role today is pretty much player-coach. I try to have my hands in everything, but then step back and assess where there is need and where we can have impact. Jesus has been my guide these past seven months and stood by me even during the periods with our mis-steps.
I believe I have seen God’s face in the smiles of some of the children. Not just during our photo ops, but during those quiet periods when not much is going on. Suddenly they notice, “hey somebody is paying attention to me and playing with me.”
I rent a small room in a nearby hostal. It is very clean and comfortable. I have internet and cable television and live a fairly normal day to day life. Staying close to the center, I am able to come home for lunch many days and catch up with the news and emails. I hit my knees in the morning and evening to thank the Lord for his many blessings and challenges.
My Church in Summit, Renaissance Church has been very generous with donations of clothing. Each month I have distributed 100-150 pounds of clothing to people that I know are needy and put them to good use. It’s always fun to see a resident wearing a Pingry, Newark Academy or Dartmouth t-shirt.
At present the plan is to continue spending most of each month here in Guatemala. Though my ability to predict much about the future is questionable, I am very committed to this center and this group of children. Lizzie and I have rented a small house in Summit. I think that will still be "home base" for me the next few years. I love telling people about what we are doing down here and look forward to telling you more soon.
Cheers,
Jamie
Sunday, November 29, 2009
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