Start From the Beginning

Welcome to our family's blog - Off the Beaty Path  



This blog will ultimately be about our family adventures raising two autistic boys and the trips and tips that has allowed us to travel to many places near and far. However, we felt it best to start at the beginning of our journey.

After a five year relationship that included attending and graduating college we were married in September 2003. We knew we wanted to focus on starting our careers and establishing our home before children would join us. After purchasing a home and attaining jobs in our chosen careers we knew we were ready to grow our family. We had a rough start as we experienced three miscarriages before becoming pregnant in February 2007.

Johnathan was our first born, the one who officially made us parents. We were so happy when he came into our lives. Especially after the challenges we had to conceive. We were just so happy to have a child. Things were great at the beginning but as time went on, we started to notice some delays and some slipping of skills that he had learned. During the pregnancy of our second child, we knew there was something wrong.

Johnathan was three when we had him tested to see what was causing his delays and rolling back of skills. It was mid-summer when he was diagnosed with autism. This was a shock to us. 

Jim: I was confused, angry, and just trying to figure out how do we help him. It was during this time that I was commuting three hours a day back and forth to work. Not knowing what we needed to do to help him or how we could help him, weighed on me heavily. Also, being in a rural location didn't help matters as resources were few and far between. When we would find a resource, they wouldn't be around long. Often the provider was just in our area long enough to get some experience and then they went to the suburbs or larger city for more pay.


Michelle:
Working in an education career path I had encountered students that were diagnosed with autism, though most of these students were on the Asperger's end of the spectrum. When Johnathan received his educational diagnosis of autism I hoped that I could use some of my experiences to help him reach the delayed milestones. I soon enough would learn that the saying 'If you know a child with autism you know one child with autism' was so true. Johnathan was unique in everything that he did and though there were similarities in some of the traits seen in other autistic children we would have to learn about him as each new day presented itself.

Jim:
No one prepares you for the guilt that you feel trying to find resources to assist your child. I was feeling guilty for needing to work and the long commutes. There was not much time to help Michelle with Johnathan (or our other son, Charles). I would spend all the time I could with him, but there was stuff that I was missing out on.

Early on, money was tight for us, so we were always working, trying to get ahead financially. 'Vacations' mostly involved visiting my family back east or were used to assist my in-laws. 

During this part of our lives, I was neglecting my mental and physical health. I was just trying to do what I knew how to do to survive.


Michelle:
Trying to find the balance between wanting to grow in my career and wanting to be the best parent to our boys was a challenge. When Johnathan was eight months old I was let go from the school I worked at and had decisions to make. I switched to subbing at various schools and took a job working at the scale house at our local farm grains elevator. Johnathan was at the time in his life where there were so many changes happening. I felt guilty I wasn't there for him to experience these moments but also felt guilty the my lack of work opportunities greatly affected our financial woes.
I know there were times that I wondered why Johnathan didn't seem to be hitting some of the milestones that other children I knew his age were. I know people always say you can't compare one child to another but as a parent you do. When the milestones continued not to be coming I found myself making excuses but felt the underlying thoughts of perhaps there was something more going on. When we finally started the testing I think deep down I knew what the results would be.

Jim:
No one warns you about the grief you will experience during the process. When I had thought of having children, I had always seen them growing up, going to college, getting jobs, moving out on their own and having their own families. With Johnathan, it is a lot of grieving about what could have been. While he was younger, I held onto hope that we could find the missing piece that would get him to be able to open up and communicate with us. I had always told Michelle that I can accept if he can't go to college, but I was not going to give up on that until we were sure he couldn't find a way to communicate with us. Part of me still holds out hope that he will find a way to communicate with us in a meaningful way and that he can find a career or hobby to make him happy.

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