Day 5: A Day for Writing and Reflection

Sarah and Valdora with Ana Maria and Gita from the 2nd Module

Today, we had a rough start... half of our team is sick and so are some of our translators. We have worked ourselves to the point of exhaustion physically, mentally, and emotionally. But, we are pushing on as we could never fathom giving up on these kids and the staff at Prichindelul. Our day started with each of us splitting up among the floors and writing down our treatment plans. These plans are important as they will be translated into Romanian and allow for the caregivers to have a clear outline on how to best serve these children thus ensuring that our efforts this past week are sustained once we are gone.

Valdora working with Jeta and Daniel from the 3rd Module

We will be giving the treatment ideas to the nursing students who will be volunteering at the center, Laura the autism specialist, as well as leaving very simple instructions on the child's crib or bed outlining their most important need that must be met. Today working with the children we saw more than ever their potential for change as they cooperated and worked together as a family. The younger children in the 2nd module were utilizing techniques that they had seen us model to help their peers.

Kids from the 2nd module helping each other jump down 

Today in the first module, Cristina also saw some tremendous progress with her kids. Sanda, a girl who has been non-verbal since our arrival, began repeating single words today. She was able to repeat the names of everyone in the room after Ligia modeled them first, saying all of the names clearly and loudly. Cristina has been teaching the children some words in sign language since it is difficult to communicate due to the language barrier and the children are loving it! Cristina is focusing on educating not only the caregiver, but also the kids themselves as some of them are old enough to play a part in their own care. Today, the children wrote down all their own treatment plans which are pictured below.

Children from the 1st Module writing their own goals including "I want to help others"

We administered some of our donated AFOs and braces to some of the children who were appropriate. They were excited to wear them and the braces were able to provide them the support they needed to be more stable when walking and standing. We were also able to provide braces to a baby with down syndrome to improve his walking mechanics and a 10 month old boy with a history of club feet to allow him strengthening opportunities and optimal positioning during walking.

Darius our "drama king" doing his hated tummy time

Sarah with Isabella and Valdora with Jeta

Based on our experiences at the center we realized that what these caregivers need is someone to explain how to provide better care to the children. We realized that they have the children's best interest in mind, we just have to help them realize what that best interest is and encourage them for their hard work in an otherwise thankless job. All of us can get discouraged with our jobs at times as we feel we are not appreciated, but we have our patients and families who provide us with positive feedback everyday. These caregivers do not have that. There are no grateful parents and the patients are not able to voice their thanks. This is why the caregivers are burnt out and why it is so tough to work in this job that is surrounded by sadness, strong emotions, and an otherwise endless battle of loneliness and frustration. We realized we needed to provide them with that positive feedback, encouraging them and letting them know that they are valued. That if the patients could speak, they would say thank you. The majority of the caregivers we have met at the center truly and deeply care for these children as their own, working for little to nothing to make their lives better.

Everyone is busy in the afternoon and working hard!

This week we have heard many stories about the healthcare system and care provided to those who are disabled or have special needs. To be born with a disability in Romania is viewed as worthless and flawed. Unlike in the United States, there are no laws or advocacy groups to fight for the rights of those who are disabled or handicapped. When a mother decides to keep and care for a special needs child, it often results in a broken family and an absent father. For example, Nicole, the four year old in the third module, was raised by her mother alone for two years. Because of her severe impairments and gross medical needs and expenses, her mother was unable to support her at home without assistance and was forced to hand her over to the orphanage. Nicole's mother continues to visit her and Nicole recognizes her when she comes. We also learned that when a child reaches the age of 18, they are forced out of the orphanage and the only place they have known as home, and sent to an adult facility. The state of this facility and the environment can only be imagined as no one is allowed to enter.

Ema working with Darius and Sarah working with Nicole

One of the reasons why it is so difficult to work with these children, is that we see so much hope and potential for their lives, yet uncertain that that potential will be nurtured and realized. We are constantly challenged to come up with realistic and meaningful suggestions that can be implemented in their current situation. As we spend time with the children, we have been trying to understand what it is like to live in their world. Things we take for granted, they may go their whole lives without ever experiencing... like fresh air, food for pleasure, social interaction with their peers, a meaningful loving relationship, or simply a purpose.  Imagine being born and living your life in the same 4 x 3 cell and looking at the same bare wall or ceiling day in and day out for your entire life. Do you think you would have the will to survive...