Saturday, April 28, 2012

The Life Story of Nathan's Voice



     I have been blessed with one beautiful daughter, three handsome sons, a energetic grandson and a precious granddaughter. My husband and I have been together for almost thirteen years and getting ready to celebrate eleven years of marriage. We dated for almost a year and a half before getting married. This is mostly due to the previous relationships that each of us had experienced. If I was going to commit to a relationship, it was important that this person accept my daughter, my son and I as a package deal. I quickly realized that this wonderful man was put in my life for a reason. My daughter and son were afraid that my new husband would try to replace their father, instead he offered them additional support and treated them like they were his children.  

     Vincent was born a little over ten years ago. When I returned to work after having him, we thought that we had found a good home day care. I dropped him off one morning on my way to work and there was a child with green snot caked on his nose standing just inside the playroom. The woman whom I trusted to care for my infant promised that he was just waiting for his parents to come pick him back up. I made the mistake in believing her because the next morning I was taking my son to the hospital because he was running a fever and was having difficulty breathing. My infant son was only two and a half months old and he was being given breathing treatments every four hours. He had been exposed to an upper respiratory infection by one of the children at the home day care. When 
my husband and I were able to take him home, we decided that I should become a stay at home mom, or most times referred to as SAHM.

     It was almost six years later, we found out that Vincent has had only one kidney since birth. This means that skateboards, trampolinesfootball, joining the military like his older brother, race car driving and motorcycle racing are things that our son should not dream of. My sister, who is a RN and works in dialysis, has already explained to him that if his one kidney is damaged, he would have to do dialysis for the rest of his life. Even if he doesn't fully understand the consequences, we did. 

     Just four months later, our youngest son, Nathan, was diagnosed with Asperger's Syndrome, one of the Autism Spectrum Disorders (ASD). 
I was sitting in the office of the Special Education Department at our local School Board. Nathan was playing with toys behind me, oblivious to what was happening around him. The school psychologist had just brought Nathan back into the room where I was while he was being evaluated. She sat down across the table from me and said "Your child has Autism". 
I felt like I had been knocked off my feet! The recent development was not exactly what we imagined for either of our sons but, our family believes in Philippians 4:13 where it says that "I can do all things through Christ which strengthens me". God has always taken care of us, even though we may not agree with His designs. 

     During the next few months, I spent a lot of time searching for answers on the internet. I became more familiar with my son's diagnosis and more comfortable with being his voice to the outside world. In the course of my search, I found that there was a Autism Speaks walk that was scheduled to happen in our area. I immediately registered and started our Family and Friends Team "Nathan's Voice" making myself the Team Captain. The four of us walked in support of Nathan the first year. Several of our family and church members joined us over the next three (3) years. That type of support was important to us as a family. 

     Nathan was going to start kindergarten in about five months and I started working with him on communication and interaction with others. This was critical because he had difficulty doing anything that was not of interest to him. If it didn't intrigue him and hold his focus, it wasn't worth his time. This is where the red CVS pharmacy savings card became more than a discount card. He was so taken with it that he kept snatching it from my purse. No matter how much effort I put into hiding it, he always found it! So his Kindergarten teacher and I came up with rules for Nathan to be able to have access to the ever so popular red savings card. When Nathan got to class each morning, he would hand it to his teacher for the day. If Nathan listened to his teacher, followed her directions and made good behavior choices then the red card would stay in one of her pockets indicating he would get it back at the end of the day. But, if Nathan didn't respond appropriately when he was asked to make the right decision, his beloved red savings card was moved to another pocket. This meant that it would stay at school, in his teacher's possession, until the next day when he would start with a clean slate. That only happened a few times. It upset him so much that I asked the store for another one and let him "visit" it for thirty minutes after we talked about why he couldn't keep it. This was a major adaptation in Nathan learning positive behavior.

     When Nathan started first grade, it was quite a transition because kindergarten had only been half a day. I spent most days volunteering at his elementary school, unless I was assisting in his classroom. With his teacher's permission, I read to his class once a week and brought a small reward for listening to the story. I went on class field trips, helped with class parties and made myself available for anytime Nathan's teacher needed my assistance with Nathan. I started noticing that I spent more time at school than I did at home but, it was worth it in the big picture scheme of things.

     By the time that Nathan had started second grade, I thought that I would be able to juggle a part time job as a substitute teacher and still help at the school when needed. I couldn't have been more wrong...it complicated things for everyone, especially Nathan! Even though I had made sure to tell Nathan's elementary school that I was available as a substitute teacher, the only jobs that I was receiving were from the middle school in the special education department. The problem was that their classes started and ended almost an hour later than the elementary where my boys attended. My dear husband was willing to help pick them up in the afternoon, at first. After a while, he complained that he wasn't able to finish what he needed to do before he had to drop everything to come get the boys. I knew that I needed to do a better job of managing my family to get things back on track.

     Nathan had begun to have problems in school and it was probably due to my not being as available as I needed to be during the day. His second grade teacher, who seemed so understanding at the beginning 
of the year, had evidently been optimistic when it came to working with Nathan. She was becoming irritated with everything that he did and it was affecting him to the point that he didn't want to go to school. I tried talking to her about what I could do to help her, Nathan and the rest 
of the class while we figured out how to get the situation resolved. His teacher kept telling me she had it under control but, all I saw was her taking out her frustrations on Nathan by taking his recess away when something didn't go as she had planned. There weren't any positive reinforcements being used in her classroom and it seemed as if she had given up on him. I was fortunate that his special education teacher and case manager had asked me to cover a month of her classes while she 
was on maternity leave. This was my foot in the door at the elementary school to show the other teachers that I was available to handle their classes, when and if they needed me to.

     Nathan made it through the rest of the school year with a few minor incidents. His class was having P.E. outside on day and when the teacher blew her whistle for the students to line up but, he decided that he wasn't quite ready to stop playing. He ignored her, which was wrong but, how she and her assistant reacted made the situation worse. Nathan was in "play mode" and when the P.E. teachers approached him, thinking that they wanted to play "tag", he ran away from them! This made them mad and he was suspended for one day as a result of the situation they created. I explained to them that his disorder made him process everything different than what another child would. If that type of situation presented itself in the future, to stand completely still while using a stern voice asking him to line up. This would prevent the possibility of Nathan misunderstanding what they are trying to communicate to him. Nothing like that has ever happened again.

     Over the summer break, I began to get frustrated over how the school year had gone and how misunderstood my child was. I didn't know what I wanted to do. I was on twitter and someone asked why I wasn't blogging about our experiences. It started me thinking that this might be the way to document Nathan's diagnosis and progress for him to look back on as he got older. I would be able to keep friends and family up to date on what was going on with Nathan, Vincent, Paul, Candace, my husband and I in the form of a blog. If what I shared helped other families, then that would be a bonus!

     Since I started my blog, Nathan's Voice, I have met so many wonderful parents with children on the autism spectrum. I am happy that I made the decision to start blogging when I did. It has been quite therapeutic, helped me record Nathan's progress, keep track of everything that we have been through, what worked in helping Nathan and what aggravated him! The little blog that I started almost a year ago now offers a variety of resources besides the details of our own experiences with Nathan's autism spectrum disorder. We welcome anyone that wants to check out our autism blog!

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