This month's post is a continuation of last month's blog. You can go to https://hopestationblog.weebly.com/stephanies-blog/life-for-children-with-down-syndrome-part-1?fbclid=IwAR0t4e8Jj_yvRINtInxpBRXAjc_77ugpW8LvoA4CKr3pLVP4LkHrUgTi5IY to read Alexander and Hope's stories!
Max’s story is very inspiring! The other four children with Down Syndrome do not attend school. The orphanage did not plan on sending Max either. However, he was one determined little guy. He begged and begged for them to allow him to attend school with the rest of the kids that go every day. He would not let the subject go! Today, Max attends school. He is learning to read and write. He is full of energy and an excitement for life. He is a very engaging young man, and has shown immense determination to live life to the fullest! I look forward to seeing the man that he will become. In a world, where people with Down Syndrome are often looked down upon, Max will prove them all wrong!
Moses is not much younger than Max. They may even be the same age. We do not know Moses’ history and how he came to be in the orphanage. But the burns on the entire left side of his body tell us that he does not have a happy story. He is a little guy bursting with energy and wanting nothing more than to run and play. He loves any activity that involves his whole body. He also has a terrific arm and great aim! He would probably do very well in baseball or football. Unfortunately, Moses spends most of his days inside one small room with several other children. He is hardly ever given the chance to go outside and has no constructive ways to get out his energy. This has led to him pulling on or hitting other children, and using his great aiming skills to throw items from around the room into the toilet. This behavior has led him to be banished to the window sill. When Hope Station visits, if it is sunny, we are able to take him outside. When it’s raining, we try to find a big motion activity to do indoors. Currently, we are working on stacking blocks and learning how to throw a ball to a person instead of the toilet! The smile on his face is huge! He is also primarily non-verbal, but when he is having a wonderful time, we can hear his excited sweet voice.
The youngest girl in the group is Ella. Similar to Moses, she is primarily non-verbal. She loves to be held! She also enjoys playing with string, dolls, and paper. She desires one-on-one interaction from any adult in the room. Unfortunately, she has not been given any form of early intervention. She picks up behaviors quickly, by copying other children’s movements. But these behaviors are not always great ones to be mimicking. She has been left to a world of her own. Hope Station is helping her learn how to do more activities that will help her develop and grow. She has enjoyed mimicking the behaviors of an adult giving her one-on-one attention. We are hoping that as she engages more with us, she will be able to engage with the world around her.
The negative views and opinions towards children and adults with Down Syndrome have played a huge role in causing these five children to be in the orphanage. There is a widely-held opinion that people with Down Syndrome are a burden to society and are not able to contribute. This is simply not true, and places a human life’s worth on their productivity instead of the wonderfully created individuals we all are! If Alexander and Hope can help the nannies at the orphanage provide care for the other children, what else could they learn to do? If they had been allowed to attend school and been given the skills to read and write, how different would their lives be? Would they have more options for a future of their choosing? With early intervention, Moses and Ella may have been given more of the ability to effectively communicate their wants and needs. What types of lives could they have lived? How much farther could Max’s determined personality push him in life if he had a champion helping him fight the fight all the way along the journey?
Over the past year, I have begun having a new love and appreciation for children and adults with Down Syndrome. I have known several individuals throughout my life with Down Syndrome and have enjoyed my interactions with them. But over the past year, that enjoyment has grown into the appreciation I now have for these precious people. With a bit more education on individuals with this syndrome and after spending time with the children we serve at Hope station, my perspective has widened. Children and adults with Down Syndrome can be and are very often fully capable and able to do so much! The publics’ view on people with this syndrome has led to many of these children to be abandoned or aborted. This view is stealing away our opportunities to bless and to be blessed by people with Down Syndrome. The orphanage that Hope Station serves currently has five children with Down Syndrome. All five of them all function in different ways and at different levels. At each of their ability levels, they have all touched my heart in some way.
Alexander is the oldest boy with Down Syndrome at the orphanage. He is a young teenager with a beautiful smile and is always excited to welcome us each time he sees one of the Hope Station staff. He loves to color, dance, and join in any fun activity. I wish that he could always be able to do fun activities and have time to enjoy the life around him. Alexander is always willing to help others and enjoys putting a smile on people’s faces. However, this willingness to help has been used against him. He has been placed in a room with many other teenage boys. All of the boys in Alexander’s room have some type of special need. Many of the boys are in wheel chairs or are unable to complete basic daily activities (such as eating or going to the bathroom) on their own. There are about 14 to 15 boys in this room and all of them are placed in the care of 1 nanny. This nanny has enlisted the help of Alexander and one other boy to help her in her daily duties. If she needs a break, to go to the bathroom or just have a minute, Alexander and the other boy are left to care for the other boys in their room. This is a huge responsibility for anyone! Especially a teenage boy! He’s still just a kid and desires to enjoy his childhood. But sadly, Alexander has had to grow up far quicker than he need to. On our trips to the orphanage, we try to make sure he gets time to enjoy coloring or dancing!
Hope is a young teenage girl at the orphanage. She enjoys puzzles, coloring, doing anything girly, singing, and dancing. When Rebekah Kepha began coming to the orphanage four years ago, Hope was always smiling and laughing. She exuded joy and anyone interacting with her could feel that, hence the name Hope. However, in the past years, she has become less and less joyful. The weight of the world is on her shoulders these days and it is easy to see in her countenance. Like Alexander, Hope has been called upon by the nanny in her room to help take care of the other children. Hope now has the responsibilities of feeding, cleaning, assisting those on the toilet, and many times disciplining the other children in her room. She is responsible for making sure no one gets hurt on her watch. The jobs she is expected to do, is the same as a trained nursing assistant in the States. Here she is, a teenager with little to no schooling being given huge tasks. She does them well, and the other children definitely respect her. But her childhood is over. She has less time to enjoy dancing and singing. Hope is also very much a teenager still. She has her moody days as teenagers do, and could use a day to take a break from all the demands she faces. We try to make sure she gets a chance to take a break and do an activity she finds enjoyable when we visit. She loves to have someone do a puzzle with her, or watch her dance.
Read about Max, Moses, and Ella's stories next month in part 2 of this blog!
I was asked the question over the summer, “how do children in China end up in orphanages?” The standard reasons are as true for China as they are for the rest of the world in many cases. For some children, their guardians meet unexpected deaths, and some parents are deemed unfit parents for various reasons. One boy in the orphanage we serve is there because his mother was arrested for drug abuse. Another little girl’s mother is currently in the hospital due to mental illness. There are sometimes even teenage mothers who are still very young themselves. Like their counterparts in the rest of the world, many of these mothers are not able to care for their children due to their lack of ability to be self-sustaining.
Stephanie (Rommen) Li
"Every child needs to be loved in gigantic quantities and with unbelievable quality."