Raising a Child With Down’s Syndrome and Autism

I’ve been going back and forth, deciding whether or not I should post this online. I wrote this for my non fiction writing class at Queens College and I finally figured that if I could write this and allow a professor–who knows nothing about me–to read it, there’s no reason why you guys can’t. I wanted it to be as honest as possible. I hope you guys see that.

 

Raising A Child With Down’s Syndrome and Autism

My brother Peter is 19 years old and was born with Down’s Syndrome and Autism. People with Down’s Syndrome are born with an extra chromosome. They suffer from mental disabilities (depending on the severity), and also suffer from physical problems, which include: being prone to seizures, having specific physical features like small ears and noses, and heart defects. Autism is a very common disease in the United States, where one in less than 100 children are diagnosed each year. People that suffer from Autism usually have problems communicating with other people and expressing themselves to others. My brother Peter is no exception to these diseases, making life tough for my mother and father.

Before my father retired, he worked in Flushing, New York as a Special Education Teacher for over 20 years. He was a teacher before Peter was born, so there was no direct influence between his birth and the decision to teach Special Education. My father needed the job because he had just been laid off as an English teacher and knew there were openings available. He found that teaching Special Education was a very depressing job because his emotionally and intellectually handicapped students were having a significant amount of trouble behaving, and there was nothing he could do to fix their problems. My father was able to come home to me and my mother, which relieved him from his stressful job. When Peter was born, my father felt worse about his life because he was forced to take a job that he did not want, and then come home to Peter, who has his own developmental disabilities. Although he could not escape this unexpected life, he learned more about the developmentally disabled at his job and applied it to raising Peter. Some of the things he learned, like having more patience with the children and controlling his emotions made his very difficult life a little easier.

My father did not know that Peter had Down’s Syndrome before he was born. It was shocking to my father and he described it as a “worst day of your life” moment. Unfortunately, Peter was also suffering from the effects of a bad heart. Doctors call this the Tetralogy of Fallot, which is described as: someone having a hole in their heart, insufficient valves, a small pulmonary artery, and thickening of the ventricle wall (National Institute of Health). These all lead to an insufficient supply of oxygen to the brain and can cause death unless open heart surgery is performed. The surgery was performed on Peter while he was less than a year old and cost my parents a lot of money that they did not have. My father said the operation cost about 100,000 dollars, but insurance and other programs helped bring the costs down. I asked my father what he thinks could be done to make these processes easier and he said that the government should have a bigger role in helping families like ours. It was very difficult for my parents to find out how to get help and where to look, which caused large amounts of stress and anxiety. If my father did not go so far to find out more about these programs, they would have been in debt and never get the opportunity to move out of Astoria, New York.

After Peter’s surgery and then being diagnosed with Autism a few years afterwards, the constant stress that comes with raising my brother never left. My father knew that he was not going to live the life he imagined and needed to figure out how to cope with the fact nothing could be done to change it. To successfully raise Peter, my father had to swallow his own ego and learn to be prepared for anything, understanding that Peter is the victim. My father said that he did not feel embarrassed about bringing Peter out in public, but struggled with the fact that Peter behaves the same way a regular baby would. If he needed to go to the bathroom, he would go wherever he was. He could only do so much to prevent this from occurring, like taking him to the bathroom beforehand; but if he has an upset stomach, there’s no way for him to say he feels sick and he will release his bowels. If we are in a restaurant, Peter yells like a baby that cannot speak, which often results in awkward looks from other people. There is no way for him to communicate to us and vica versa, which sometimes leaves us clueless on how to calm Peter down and prevent these situations from arising.

My father said that he never really looked to other families for any kind of help, advice, or inspiration for Peter, but understood that he was not alone. He felt that there was nothing that they could say to make him feel any better about Peter because he will still be the same. My mother likes to look to these families for motivation and inspiration, while my dad has a more realistic and honest perspective. My father knows that nothing will change, so he pays more attention to the positives that Peter gives us. An example of this is maintaining his childhood innocence. Like myself, my father understands that Peter is the “victim” and does not let his own ego control his thought process. He understands his role in Peter’s life and does whatever he can to give Peter the best possible life. My father also knows that Peter is a very loving child who is constantly getting better and better at showing it to us. Peter has maintained the innocence of a child that we all wish to get back, which helps my father get past the challenges of raising an autistic child.

Peter’s innocence comes in a variety of forms. One example is that he finds enjoyment in the simplest of things. This ranges from seeing someone else laugh, to watching Barney and various home videos. His expression of happiness is very contagious and always makes me feel better when I’m upset. Another form of Peter’s innocence is his ability to forgive. Peter is very good at finding ways to annoy me and my father. For example, Peter repeatedly plays specific parts of his movies for long periods of time at loud volumes. My father is a very patient man, but like everyone else, he has his braking point, resulting in Peter getting yelled at. Peter does get upset because he sees my father upset, but this only lasts for a short time. He never holds a grudge and will act like nothing happened after we play with him. Every day, Peter expresses his love for us, no matter what happens. We all hope to find someone like this in our lives and I am fortunate enough to call this person my brother. Many families might experience this with a new born baby or a brand new pet, but the dog cannot talk, and the baby grows up. Peter will always be the same, making him unique.

My father openly admits to being a very pessimistic person that often lets his anxieties control the way he acts. He understands that this is not close to what he considers to be an ideal life, but he never lets it get in the way of Peter’s life. He made the decision to keep Peter, so he does whatever he can to make him happy. My father feels that ego plays the most important role in raising a child like Peter because raising a child with Down’s Syndrome and Autism is an extremely difficult job for anyone. When asked about his opinion on families that choose whether or not they will keep their baby that is developmentally disabled like Peter, he felt that it is up to the parents to decide if they can put their own egos aside to focus their attention towards the child. He would hate to see a family keep their child because they feel it’s necessary, rather than actually wanting to. I share this outlook with my father and I think that this is the question every parent that faces this situation should ask before making a decision.

Peter is 19 years old with an IQ of a two year old baby. The reality of the situation is that he will never change, even when he is a grown man. My father and I understand this situation and try not to let it get to us. However, I wake up eager to see my brother while my father wakes up worrying about the possibility of cleaning his wet bed. He is more responsible for Peter than I am, which naturally gives him more anxiety, but also relies on me to help out by watching over Peter. Like my mother, I look at other families for motivation and inspiration, understanding that my dad is correct when he says that they cannot change our situation. There is so much your family can do to help you cheer up, but it’s very easy to feel like you’re the only one going through these issues.

Watching my father raise Peter and helping him when he needs it made me realize that the world is not the fairytale where everything works out perfectly. Like Peter, life has many flaws, but we can’t let those flaws hold us back. Sometimes we have to dig our feet in the ground and play with the cards we are dealt. By accepting Peter for who he is, and not worrying about how others might perceive him, the good that exists in him, like his childhood innocence and desire to see everyone around him happy, help make the seemingly impossible task of raising him a little easier.

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