Today we traveled to the Southern Valley of Cusco to visit three homes of children with disabilities. These children all live in very rural settings with limited resources. We spent an hour with each family to evaluate the child and their environment. Based on the child’s ability and the resources available, we taught the family exercises and positioning techniques. The first family had a little girl with cerebral palsy whose older sister took time to massage and stretch her every day. The work she was already doing with her was incredible for the girl’s progression but she wanted to further her support and care even more and had many questions for what else she could do to help. We practiced sitting and standing balance and taught the sister how to support the girl in these positions. Next, we visited a 9-year-old boy who also had cerebral palsy. He was more resistive to physical therapy intervention but we did what we could to educate his father on proper positioning and provided suggestions of ways to stimulate his son during the day. This family also had a routine for stretching and treatment already in place and we added just a few more things. The third visit involved a 5-year-old boy who suffered a traumatic brain injury when he was two and fell from a second story window. His father communicated that the boy spends most of his time in bed as he could not sit or stand independently. We demonstrated how to support the boy in sitting to increase trunk and head control and discussed how to progress this to supported standing balance once he gets stronger. After this, we took a look at the fit of his wheelchair, which had not been adjusted in quite some time. His father got his tools and we walked him through how to correctly adjust his seat, head rest, lateral supports, and foot support for his current size and as he grows.
In the countryside of Peru, the mentality surrounding children with disabilities contrasted immensely from the mentality in the city. The stigma was far more pronounced. Some families believe these children to be possessed by demons and others see them as permanent toddlers. Children with disabilities in these communities aren’t brought into public spaces often so people here have less exposure to and conversations about this population. This rural setting revealed a priority differential compared to the other families we worked with because they had a finite set of resources to work with. Families in the city working with Manos Unidas were empowered and had a surrounding group of parents and staff to support their journey. Celeste hopes to expand this parent empowerment culture to these surrounding communities.
One of our goals with the rural home visits was to provide these families with sustainable interventions. We wanted to relay the notion that their kids are capable of so much if given the right tools. Although a shift in mentality as big as this takes time, we started by teaching them some of these tools. This was our part in helping the members of Manos Unidas transform this area, and we were glad to have provided this support that wouldn’t have been possible without us.
~Mica, Maddie, Sam, & Nicole