No, But Really... What IS The Plan?

I know I've been sharing a ton of excitement lately about all of the new possibilities coming my way, but few details regarding the actual "plan." Part of this is due to the many transformations that are taking place at this early stage. Every day, a new idea or opportunity presents itself, and I'm doing my best to maintain a tight focus (for now), identifying the ideas that seem most pertinent, most pressing, and the most viable. Setting up and running an organization is going to be an incredibly rich learning experience, and I feel very strongly that in order to ensure the success of the effort, I need to focus on one possibility at a time, gaining experience, insight, and skills, before attempting to implement another grand idea.


It's just that there are SO many grand ideas to be had, here! The networking I've been fortunate enough to do has been invaluable. I am learning more and more about the different organizations here that serve or interact with the special needs population, the way their services are delivered, and common complaints and criticisms about each. I'm learning about the different needs that exist in various parts of the country, and the names of the people trying to meet those needs in specific ways (residential care, provision of wheelchairs, medication assistance, etc).


Additionally, I have met two people who are passionate and committed to improving quality of life for children with special needs. Lesley, from OSHP, and Selena, the yoga teacher and long-term volunteer at Nuestros Ahijados who referred me to Lesley. Corinne and Charlie had several long-term volunteers at the house last night for a rooftop barbecue, and Selena and I had more of a chance to discuss her experiences at various organizations in Guatemala, the needs she saw, the barriers she confronted, and ways in which she desperately wants to personally support these kids but has not had the time or ability to yet coordinate those supports. 


I appreciate everyones' patience with the vague assurances of "great ideas" and opportunities to come. Although new ideas and possibilities tempt me every day, and the project will continue morphing and developing for a long time to come, a handful of the plans entertained are edging closer and closer to being "definite."Now that things are solodifying, it is becoming much easier to complete the website. In the meantime, I wanted to share with you some of the material drafted for it that describes what is currently happening in the organizations we will be working with, what the needs are, and how we intend to meet those needs. 


This is a project description I'm drafting and working up for use on the facebook page and website. It may give many of you a clearer idea of what plans are actually being laid down here, beyond snuggling babies and "helping kids with special needs." 


Enjoy!



"The support offered by Special S.T.A.R.s varies based on the strengths and needs of the communities and programs we serve. Currently based in Antigua, Guatemala, we are forming partnerships with two local organizations serving Antigua and surrounding areas.


CASA JACKSON- VOLUNTEER/STAFF EDUCATION:

Casa Jackson, located just outside of Antigua, in San Felipe, offers in-house acute care to severely malnourished infants and children. Founded and supported by Asociasion Nuestros Ahijados, Casa Jackson is visited by almost a thousand volunteers each year. All volunteers are give basic training regarding safety, hygiene, and proper care of infants and toddlers. 

Children with special needs are at increased risk for malnutrition, and a number of the children admitted to Casa Jackson each year are affected by a variety of medical and developmental issues. While skilled volunteers do visit periodically and teach staff and volunteers about how to support all babies' health and development, there are currently no formal, ongoing training opportunities or educational materials available to interested volunteers, staff, and families trying to better support the children with special needs.

Special S.T.A.R.S. is working with Casa Jackson/ANA staff to film an instructional video demonstrating some basic techniques and simple changes that can be easily integrated into children's daily routines. These techniques and changes include "tummy-time" and developmentally stimulating activities for typical infants; use of different positions to provide strengthening, stimulation, and interaction for all children; why, when, and how to safely stretch the muscles of children with physical disabilities; and how to safely feed children with cerebral palsy and similar disabilities.

In addition, we are developing a series of brief, hands-on training seminars for interested volunteers and staff; another series designed to help parents and caregivers of children admitted to Casa Jackson understand their child's unique needs and how to support them; a visual "care guide" to provide to parents of children with special needs prior to discharge (illiteracy is common); and reference and resource materials to assist local staff in selecting developmentally appropriate positions and activities for the children admitted.


OBRAS SOCIALES HERMANO SAN PEDRO/FAMILY OUTREACH & EDUCATION:

Obras Sociales Hermano San Pedro is a large private hospital located in downtown Antigua. OSHP serves a variety of medical and social needs within the community, and is home to one of Guatemala's largest residential programs for children and adults with developmental disabilities. 

Children admitted to OSHP stay receive loving, compassionate care in the facility for all but eleven weeks per year. Those who can be safely returned home for their summer and winter visits stay with their families, who are given food, medication, and medication dosages and instructions. Families do not receive any information, education, or support in caring for their children, who are generally very significantly disabled. 

While some parents simply are not responsible or dedicated enough to properly care for their children, other parents long for the chance to provide a better life and better care for the child they love so dearly. These parents may struggle with poverty, lack of education, and abuse or abandonment by their spouses. They often feel that they have only one chance or choice to ensure that their child is cared for safely and skillfully, and with heavy, broken hearts send their children to live at OSHP.

For the parents who make the difficult choice to send their child to live at OSHP, help may be a long time coming. There are a limited number of beds in the pediatric ward; only when a child moves up to the adult ward or passes away does a spot become available. A number of children pass away each year while waiting for their chance to join the OSHP family.

Surprisingly, there is no support offered to families between referral and admission to the OSHP waiting list, and the point at which a child is actually admitted. While these families wait, the children suffer under the same conditions that warranted the referral for out-of-home residential care in the first place. No system exists to monitor these children and ensure that they are safe from maltreatment or neglect, let alone to support parents in improving their ability to safely care for their child until a bed becomes available at OSHP.

We are in the early stages of collaborating with Lesley Pierce, a doctor and long-time volunteer who directs the Early Stimulation Programme on the pediatric residential ward, to develop and implement a system to monitor and support children on the OSHP waiting list; provide support and education to help families improve their understanding of and ability to meet their child's unique needs when home on holiday; and to identify and deliver the material resources needed to enable the most dedicated and caring parents to provide safe and competent care for their children at home."