Thursday, June 19, 2014

Night and Day - Closer look at Taylor

My first experience with Taylor was overwhelming. 
I could not imagine how the teachers and children function in the classroom with him. He seemed aggressive, disagreeable and hard to manage. Taylor is almost 5. If you saw him in a picture you would not know that he is disabled. He is a white male, bright blue eyes, and blonde hair. He is the only child of two loving parents. Taylor can walk with some assistance. He has seizures regularly. He has a very limited vocabulary and it is difficult for me to understand the few words he can say. I know I have heard him say “eat”. He is similar to a bull in a china shop when he is taken out of the special chair he sits in. He has very little impulse control. He will grab objects and put them in his mouth. He will throw toys and hit the other children. He grunts most of the time. The first day I saw him his nurse aid was out sick. He has a nurse aid because of all his medical issues. The classroom teacher had to literally follow him around and make sure he wasn’t hurting himself or other people. He was frustrated and would throw himself down. He would buck with his body too. The teacher often had to resort to putting him in his chair to keep everyone including him safe. He was all out of sorts. The teacher kept assuring me this wasn’t a typical day. I kept thinking I don’t know how you do this. When we went outside he was put into the swing and I saw the first signs of joy. He loves to swing. He has to be in an adapted swing because he can’t hang on to the typical chain swings with fully functional able bodied children use. The seat he used looked a lot like the seat used for a baby swing inside only much bigger. When we came back inside it was time for lunch. Taylor cannot feed himself without assistance. He requires someone to sit with him and present food on his tray. He is able with a lot of effort to grab his foot that has been cut in small pieces. He likes to try to negotiate using body language and grunts to get the food he prefers. He enjoys his food. It takes the entire lunch period for him to eat plus a little more time. Most of the other children eat, use the bathroom and get on their mats while he is still being fed. It takes a lot of concentration and effort for him to simply eat. Transitions are difficult. He doesn’t want to lay down. The teacher must sit with him while he tries to rest just in case he has a seizure or tries to get up and hurt another child. On this day all I see is destruction and frustration from him except for when he was in the swing. My second experience with Taylor was two days later. On this day his nurse aid was there. She has been working with him for almost a year. She brags about all his progress to me. Taylor is a completely different child with his nurse aid with him. He smiles and laughs. He is happy. He knows what to expect. He is still defiant at times but she resolves the issues quickly. She engages him indifferent activities in the classroom. She moves with him like a shadow. They have a rhythm and an understanding. This is not to say that the classroom teacher doesn’t love him but it is evident that Taylor feels different about his nurse aid. He is so much calmer and receptive to her corrections and attention. He grunts but doesn’t throw himself on the ground. He becomes part of the group activities much more seamlessly. When we move to outside he gets excited. The nurse aid moves him into the swing. She knows exactly how he likes to be pushed. He likes to swing from side to side. He laughs. The harder she pushes the happier he is, it seems like he likes the feedback and the movement. He is observant, taking in all the sounds. She notices and moves him so he can watch the cars driving by. He keeps on turning his head because of the sound he heard so she turned him. I watch as he moves his head to follow the moving cars. Swoosh! Swoosh! The cars whiz by. Taylor stays content while we are outside, then it is time to go in. He does not really want to leave but decides to give up the fight. His nurse aid tells me that his parents are very proactive with his care. His mom has been takinghim to Boston to receive hemp oil in a trial medical treatment. There have been side effects that were not expected but they believe it is the combination with milk and the hemp oil. He experienced several weeks of diarrhea following his treatment. His mom kept him home during that time. There is often communication via text messages with the teachers, nurse aid, and parents. His care is a team effort. Lunch time is much smoother when we go in this day. Taylor is a totally different child than the one I witnessed my first time in the classroom. He still takes a while to eat, much longer than the other children. She later transitions him to the mat. He wants nothing to do with napping. She literally has to hold him and protect herself from him. He is fighting to rest.
The nurse aid and teacher work together to clean him up and contact mom. He is picked up early from school.
My third experience with Taylor was today. Today he did not  have his regular nurse aid but a different one that has been with him regularly on Thursdays. He is not as happy with her but listens and does well. During nap time another woman comes in to work with him on sign language. Taylor is lucky because his parents have the financial resources to provide extras most children would not be able to get.
This makes me think of the privilege money affords disabled children. There are children who are not afforded the resources Taylor receives. When I first met him I thought why is so defiant. But then I realized that he was not getting what he needed nor what he was used to. I think we are all that way, it is just that he can’t express it in words. He can’t say where is my regular nurse aid? Why is this lady here today? He grunts and throws himself on the floor. It reminds me we have to look at the whole student not just the pieces.
I am so thankful for my abilities. I am also thankful my eyes have been opened and my heart for knowing Taylor for this brief time.

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