Thursday, June 16, 2011

In The Beginning

     When Nathan was first diagnosed with Autism he was almost 5 years old.  That was almost three and half years ago but, in our eyes that was more than three years late. Right after his 18 month vaccinations, Nathan started showing symptoms of not responding to his name, wanting to go off to play with his toys by himself and using a very loud voice when he decided he wanted something. Unfortunately, we were confused with what we were seeing and the ever so frequent & consecutive ear infections he was experiencing. Nathan was barely two (2) years old when he had to have his 2nd set of ear tubes due to his 1st set of tubes falling out too soon. He had started having ear infections again. We had a good pediatrician but, it always seemed that whenever we brought up our concerns, he would excuse it away with "it's normal for his age to be distracted with what he's playing with" or "he'll outgrow it in time". We tried to accept his explanations but, deep down we definitely knew that there was something more we couldn't quite put our finger on. 
     Nathan's brother, Vincent, had been doing well in PreK 2 and was a very attentive student in PreK 3 when Nathan was starting PreK 2 at the same private church school.  Nathan was distracted easily, wasn't able to focus for more than 15 minutes at a time & would run around in circles laughing at everything that was said to him. He had a very understanding and patient teacher who would let me come in to help with arts and crafts to give her a break once in awhile. It was even more difficult when he started PreK 3 the next year.  His teacher had her own little boy, that was younger than Nathan, in her class. It was a combination of her being a young mother, no teaching experience and having Nathan "performing" for the class constantly that made it difficult for that class to get anything accomplished. He spent a good percentage of his time in my classroom next door. I had just been hired 6 weeks after the school year had started to split the PreK 4 because the enrollment was over-whelming for the one teacher they had in place for that age group. I was estatic about being near both of my young boys during the day. Working with the 4 year old students was a bonus but, having Nathan in my class was a distraction when it came to the students trying to complete class assignments. I couldn't understand why she and a few other teachers were always telling me he was "bad" or that I needed to "discipline" him more. I was concerned that because he was different that they would hold it against him instead of trying to work with him. We barely made it through the remainder of the year. 
     I tried to talk with my pediatrician about the way that Nathan was behaving but, he convinced me it was the ear infections that were his only trouble. The poor child had to have a 3rd set of ear tubes to allow his ears to function properly against the unruly seasonal allergies that he inherited from me. His older brother, Vincent, had just had to have his 1st set of ear tubes. I tried to believe what the pediatrician was saying to me but, something was telling me that there was more to why my son was re-acting to certain situations the way he did. There was a child with autism that went missing that Father's Day from the trailer park located next to our church. He was about Nathan's age and many of us church members were out searching for him in lieu of attending the Sunday morning church service. I did not know much of anything about autism except from watching a movie called Mercury Rising that I had watched almost 10 years ago. I did an internet search on autism and what I was reading made me start to cry. The missing boy was found safe later that day but, the concerns that I had expressed to the pediatrician were at the surface and stronger than ever.
     I was hitting my head against a brick wall with my son's pediatrician. He was a well trained professional in the medical field and had proven himself to our family repeatedly when it came to resolving the ear infections with both boys, as well as with Vincent when he needed to see a Urologist later that winter. What I couldn't quite understand was why my 4 year old son wasn't adjusting to school, or anything, like his brother. What was I doing wrong and what could I do to help him? He was actually getting worse. I sometimes couldn't take him into a store, regardless of the size or type of store, without him screaming and hitting himself. The looks and comments that we would get from people around us when he would start doing this was unsettling. It would range from "is your little boy okay, did he get hurt" almost in an accusing tone of voice to "you should really try to make your kid behave" like I was the type of parent to let my child do whatever they wanted with no regard to society. It made me mad that someone who didn't even know my family, or how different my son was from anyone they knew, could give me advice on my child! I knew very well that Nathan was like no other child that I had known but, I hadn't been able to figure him out.
     We tried PreK 4 the next year but, he spent most of  time back and forth between my classroom and the office where his teacher would send him when he was "bad". I was having a hard time concentrating on my class knowing that my own child was suffering because he couldn't find his place in our world. I decided to give my notice of resignation so that I could spend the time needed to focus on getting Nathan whatever he needed. The school was far from understanding and made us find another school for our Kindergartener, Vincent. It was a difficult adjustment for our almost 6 year old son to change schools and make new friends but, he did quite well. While preparing for the holidays that fall, I spent a lot of time on the phone and the computer looking for answers to Nathan. I knew that our family needed to find out what we could about what was bothering Nathan so that we could help him and it needed to be quick! With him needing to be ready for Kindergarten in less than a year, it would take a miracle.
     I finally decided to contact our public school system Board of Education for any ideas on what I could do if I thought my son needed testing. They informed me that they could test him but, it would be sometime after the first of the upcoming year before they could get to him. That was better than what I had been able to get up to this point on my own. I just had to be patient and work with Nathan just like I had been all along. It gave me hope that we might finally have the answers we were looking for to help Nathan but, it seemed like the next two months took forever to pass. When it got here, the anticipation about did me in getting everyone ready for school and the appointment that morning. I was a bundle of raw nerves & had a side of "I don't know what" bouncing around holding my hand as we entered the Board of Education for our appointment that day. It would be safe to say that the wonderful people we met that day weren't quite sure what to think of this frazzled but, very protective mom and her young rambuctious son.
     At the first of three appointments, we were asked a lot of questions about how he acted, re-acted and behaved in general to certain situations. His eye sight was tested and when they brought Nathan back into the room, they said that the test was "inconclusive". They weren't sure what to make of it but, Nathan would definitely need to be checked by an eye doctor that specialized in the testing of young children before the Board of Education could finish their testing on him. I was so frustrated that all I wanted to do was cry! What was wrong with my baby? Surely he wasn't blind. He wasn't bumping into things or falling down. So, of course, I made the appointment to get Nathan's eyes checked immediately. After the optometrist was finished testing him, we found out that Nathan couldn't see up close or far away and the glasses lens that he needed were very thick, almost like the bottom of a soda bottle! That explained why he always came back frustrated when we would ask him to go get his shoes or bring something to us. He could barely see what was in front of him! I ordered the glasses before leaving the specialist's office and they told us that we would have them in about a week because they were being made special order for Nathan. Then, I called the Board of Education to let them know so we could set the next appointment to continue with Nathan's testing. It would be approximately 5 weeks before we would be able to start getting any answers. During that time I was given a form that Nathan's pediatrician needed to complete & fax back to the Board of Education. It asked questions of Nathan's behavior and what had been observed by the pediatrician. It was not completed, as requested, even with me dropping it off in person and checking back on its status each & every week prior to my next scheduled appointment for Nathan's testing with the Board of Education. This was the only reason that they turned us away and why we had to re-schedule for almost a month later. As Nathan and I were walking back to the car, the pediatrician's office called to say that the completed form had just been faxed, more than half an hour after our appointment was scheduled for! By this time I was livid, my heart was racing & all I could think about when I looked into Nathan's eyes was that we were almost there...the answers were in our grasp and the wretched doctor had post-poned things but, we weren't going to let him win!!
     Our final appointment came and on that morning, we got ourselves ready for what we knew would be the beginning of a new journey as a family. We would finally have something to work with...an answer to what it was that made Nathan unique. I suspected it might be autism but, when I heard them say it aloud it was hard to accept. They explained that Nathan was extremely intelligent but, had problems with social skills & we would have to work with him. The individuals that evaluated him explained  to me that he was "high-functioning" & that I should look up Asperger's Syndrome. It would better describe his disorder than just the generalized term of autism. I spent the rest of the day playing with Nathan until we picked up his brother, Vincent, from school. Then after dinner, I spent the entire evening researching on the internet. I was finding out that 1 in every 150 children were diagnosed with autism spectrum disorder, something like 1 out of every 70 boys were being diagnosed with autism and every 20 minutes a parent was being told that their precious child had autism! I eventually ended up back on a website called Autism Speaks, which offered a 100-day kit to those families with someone they loved recently diagnosed with autism. Even though it took several days, or longer in some cases, for our family and friends to come to emotional grips with Nathan's diagnosis, we had already started our journey to becoming a stronger family.

Lorrie

4 comments:

  1. I cannot pretend to even 1/2 way understand the journey that your family is taking. I can only believe that good things are coming, and that the resources that you need will come, and that the support you need comes your way. Hugs for you all, and for being Nathan's voice. That's incredible.

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    1. Since I wrote this post, I have become the leader for local parent-led support group, I am working full-time the local middle school and I am also back in college working towards my teaching certificate in Special Education.

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  2. WOW. what an amazing story.... So glad you continued pressing the issue. How he is doing?

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    1. Even though our journey started out similar to a rollercoaster ride, our Nathan has made tremendous progress. He is making excellent scores in 5th grade and excited about transferring to the middle school, where I am, when school starts this fall.

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