She is a beautiful young woman who has come into our lives and made a huge impact on each one of us. We girls especially could seriously argue over who adores her the most!
(The truth is though, Nate would give all of us a run for the money).
Emily is enjoying her first year in college.
We miss her so much.
Last week she told me she was writing an English paper about my family, and about Nate.
She posted it on her blog the other day, and I want to share it all with you.
It's a wonderfully written paper, and I am so honored that's it's written about us!
Emily honey, we love you!
Down Syndrome: [n] a genetic disorder, associated with the presence of an extra chromosome 21, characterized by mild to severe mental impairment, weak muscle tone, shorter stature, and a flattened facial profile.
Three years ago, I met someone who stole a chunk of my heart. His name is Nate Kocian and he is four years old.
For the past five years, I have volunteered at a camp called Camp Daniel which is a nonprofit camp for people with disabilities. I have been a counselor every year. Unfortunately, they only hold camp for four weeks each summer. Every week of camp is different, wild, and crazy. The people that come to camp as campers have a wide variety of disabilities ranging from Down syndrome, cerebral palsy, and/or autism. Although those are the three major disabilities that are seen at camp, there are more diagnosis’s represented by the campers who come to Camp Daniel. I have seen ADHD, autism spectrum disorders, developmental disabilities, blindness, and hearing impairments. One thing that I haven’t seen at camp is when people have an illness or a strictly physical disability. Almost all of them have mental disabilities. Camp and my school life didn’t really connect that much because our school was small and didn’t have a large special education program. Something that I saw at school and not at camp was through a girl named Marissa. Marissa was diagnosed with cystic fibrosis when she was born. Over the years, she got worse and worse, but kept her spirit up. Over the years, I always wanted to introduce Marissa to camp, not so that she could be a camper, but so she could visit and meet people that had situations closer to hers. I think that if she came to camp, her life would have changed, much like everybody else’s lives.
I met Nate sitting on a swing at Camp Daniel. He was sitting on his older sister's lap singing 'I Will Rise' by Chris Tomlin. He put his hands up to his cheeks with his fingers outspread, his sign to pick him up, and he crawled over to my lap. This was the first moment that Nate captured my heart and we sat there for ten minutes singing songs with his big sister, Hannah.
Nate has Trisomy 21, the most common form of Down syndrome. When Jill, his mother, was pregnant with Nate, the doctor told her and her husband James that their baby had a possibility of being born with a disability and advised them to get an abortion. Luckily for everyone in Nate's life, they didn't listen. They changed doctors and Nate soon came into this world.
When somebody is diagnosed with Down syndrome, it doesn't mean they are stupid or a moron, and especially does not mean they are a retard. It simply means that they are slightly delayed at body control and mental function. Most of the time, people with Down syndrome have moderate IQ’s. At four, a 'normal' child can walk, run, play, and talk. Nate, on the other hand, can walk with help, play with a different ability that other kids, and can say some words. People diagnosed with Down syndrome usually have decreased muscle tone. This is the reason that Nate cannot walk without assistance yet. He goes to horseback riding therapy to help his core muscles develop. Instead of always using words, Nate has his own form of communication. He can verbalize some things and he uses his own form of sign language, which differs slightly from the normal American Sign Language. Nate is not talking in whole words. His normal words are ‘dada’, ‘bubba’, ‘up’, ‘bah’, and ‘no’. He is four years old and although he can’t talk like a typical child, he can have a conversation with anybody. Like most people with Down syndrome, Nate’s emotions are pure. They don’t care what you think; they will speak the truth about what they see. If they think you look funny, they won’t even think twice about telling you. Another thing commonly seen in people with Down syndrome is heart conditions and health problems. Luckily, Nate has a perfect working heart. Just because Nate is delayed does not mean that he is any less of a person than a child without a disability.
Nate and I were sitting in the camp chapel watching the camp puppet, Georgie; sing his ''famous'' song. We sat there dancing and singing along. As we were singing and dancing, he would sometimes look up to me and smile. When he smiles at me, I know that I want to have a child with Down syndrome. Again, Nate captured my heart. At this time I wasn't close to Nate's family and I went a whole year without seeing him. Yet I still thought about him thanks to pictures put up around my room. So, the next summer, I decided that I was going to grow closer to him and his family.
Some people claim that people with Down syndrome are worthless and contribute little to nothing to this world. Some people claim that people with disabilities should not be allowed to live in this world. TheGrimJesus said on fugly.com:
“I for one think they should be snuffed out in the womb so we do not have to deal with them. There not meant too be here. I never remember anything in history about retarded Cavemen or Retarded Knights. You know why? We fucking killed them and it worked for a very good long time and should still be done today.”
One out of 800 babies is born with Down syndrome. In the United States, 84-91 percent of babies diagnosed prenatally are aborted. (Enouen) Due to prenatal testing like Maternal Serum Screening, many expecting mothers now have an easier chance to find out if their child may have a disability, which makes it emotionally easier to get an abortion. This means that the number of babies being born with Down syndrome is declining quickly. To most people who have never experienced being around somebody with Down syndrome, this does not make a difference in their lives. They say that we are getting rid of the weak and useless in society but to people like me, who know and have been touched by the joys of someone with Down syndrome, this is terrifying. Another thing that is terrifying is the bullying that goes on as quoted on this webpage:
“Up until a few years ago my Church used to organise trips to our local retard home, so we could get a look at these filthy animals close-up. I used to take a few of my children at a time, and get them to stare into these creatures eyes, until they saw the demon within…. You can really see the wild animal in there. The demon. You can see them for what they truly are. Their hatred for my God, their denial of him. I for one can't wait till all retards burn. Praise Jesus!”
So many people use the word ‘retarded’ to make fun of people. They think that it is only affecting the person that is acting, as they say, ‘retarded’. Most people don’t know the horrible connotation it emits when you call somebody retarded. They are affecting people who have disabilities and you are making fun of people that are diagnosed with a disability. I have met people who have been teased, pick on, and even abused for being disabled. Because of these stories, I fear for Nate’s future. I fear that he will come across people that will make fun of him and abuse him. I fear that people will look at him as though he is not a person.
December 2010, I visited the Kocian family for an afternoon. Nate had turned three a few months prior. He was practicing standing up by himself. We were all huddled around him in the living room. James stood with the camera, Jill sat with the reward, and everybody else watched with support and love. Every time he stood up, he would be rewarded with a bite of a Reece's Peanut Butter Tree. He stood longer and longer each time he tried. When he stood up and stayed up for a few seconds, the whole room erupted into cheers and praise. Because there was over ten of us cheering him on, this gave me hope for his future. Hope that not only will he be loved, but that he will be supported throughout his life.
People often declare that a child with a disability is harder to raise than one without a disability while many families with a child with a disability report that it isn't true. According to Exceptional Learners textbook: some parents experience high degrees of stress, but over time it decreases. And some actually gain unanticipated positive benefits from having a child with a disability.  Every child has good days and bad days. That goes for every. Single. Child. Say a parent has a child that can't speak at the age of five-it doesn't make a child different from any other child. The child can bring difficulties, but it can also bring immense amounts of joy.
Nate Kocian is the prized member at camp. Whoever has Nate gets all the attention. Everybody fights to have a turn holding him and sitting with him. Because of my close relationship with the family, I got the privilege of holding him more than others. That summer, Nate and I made a bond. If I walked past him, he would hold his hands up to his cheeks with outspread hands and I would gladly pick him up.
This past summer of 2011 is full of stories of Nate, his family, and me. For four weeks of the summer, I volunteered at Camp Daniel, a place where Nate's family volunteers. Throughout the weeks, I took care of Nate for a couple of hours at a time, whenever I had time to. One evening, I was having a particularly rough night because I had a camper that was physically and mentally challenging for me. She was in a wheelchair and had the functions of a one-year old. Whenever I have rough days at camp, I go to Nate so he can cheer me up. So, I took Nate and sat down watching the talent show with my camper. Something miraculous happened. My camper was sitting there quiet and relaxed, unlike her usual self. Nate was sitting on my lap very calmly, and I was sitting there in peace. Nate brought peace to my camper and I and I will never understand how he was able to do that. Then, after sitting there for about an hour, another magical thing happened. James went up to the microphone and sang Amazing Grace while playing the piano in the background. As he sang, Nate sang along with every word. He didn't pronounce and sing every word exactly how it is supposed to sound. Instead, Nate sang his own words, a combination of dada-up-bah-yah, but they meant exactly what the lyrics in the song meant. He had a way of making my bad day end with a great moment. That whole week when I had a rough time, Nate would cheer me up.
The second week of camp the Kocian's went back home, but came back and visited. When my friend who loves Nate as much as I do saw their van pull into the camp, she grabbed my hand and ran. After we got to the van, I gave everybody hugs and then opened the side door where Nate was sitting in his car seat. He gave me a big smile when I opened the door and I returned the favor. I unbuckled him and picked him up out of the car. Nate grabbed my cheeks with his hands, smiled widely, and put his face up to mine. He does this when he is extremely happy. Nate loves everyone, but for him to grab my face like this was very special. The moment he grabbed my face, I was full of joy.
The final week of camp came around. My camper was fun, easy, and relaxed. I had my week scheduled perfectly. Wednesday evening I was told that Marissa was back in the hospital again and not doing too well. Marissa and I weren't the closest of friends, but we did have a history and friendship that carried back into middle school. Marissa was constantly in the hospital. That day I was very worried about her. In the evening, a fellow counselor who was also Marissa's friend told me she was stable and doing better. I was still nervous, but a bit relieved. Thursday at dinner I was waiting on my camper to finish eating her meal. My friend at camp came in and told me sadly that Marissa had passed away that day. It didn't register with me right away. I got up and left for outside. It was heartbreaking because she was a beautiful girl who was fun and loving. Even though she was going through so much pain and suffering, she never gave up hope. I walked outside and even though I was miserable and devastated, I couldn't help but think that the setting I was in was a cliché. In most sad movies, the main character gets heartbroken and walks in the rain. It was raining that evening, making me feel like I was in a movie. Even if it felt like it was a movie, it was real, Marissa had died and I couldn't change it. Even if I was sad that evening, I still had a responsibility to take care of my camper. I composed myself and went back into the dining hall and took my camper to chapel. Because it is a small camp and everybody talks to each other, everybody knew what was going on. Knowing that Nate could always cheer me up, my friend stole him from whoever had him, and set him on my lap. Nate sat with me during the first half of chapel. I couldn't help but cry. It wasn't bawling though, it was simply a couple tears that consistently ran down my face. I had tissues next to me that I would wipe my tears away. While listening to the songs, I didn't notice some tears that were running down my face, but Nate did. As I was holding him, he reached over and grabbed a tissue and wiped my tears off my face. That moment, I know that Nate knew exactly what was going on. He wiped away my tears and gave me hope that it was all going to be okay.
Nate Kocian is an extremely intelligent young boy. He is four years old and diagnosed with Down syndrome. He will need support the rest of his life, he won't be able to do things that 'normal' people do, and he will be made fun of. Yet to me, he is perfect exactly the way he is.
If you read the whole thing, thank you! This is one of my final papers for English and this one is my favorite!!
If you read the whole thing, thank you! This is one of my final papers for English and this one is my favorite!!