Acknowledgements
First off, this is not a political statement. Nor am I here to lay blame. I'm here to share my experience with raising a child with Autism. We got our diagnosis 14 years ago and I would like to thank all those people whom helped us along the way. Speech therapist, Occupational therapist, Physicians, Social Workers, teachers, family and friends who held our hands and guided us through one of the most challenging experiences of our lives. Without all of you, the story I'm about to share couldn't be possible. We are in a debt of gratitude, for the selfless and tireless efforts on our behalf. Many of you are at the starting line and never get to see the fruits of your labor at the finish line. This is for all of you, the finish line! This is also for those whom may be at the beginning of this journey. I hope this will give you encouragement and hope there is life after Autism. As a side note, I will not be using real names to protect the privacy and identities of all involved.
The early years
It was the winter of 2001/2002, my son had turned four years old and I had just started Graduate school. Leading up to this point we were beside ourselves. Desperate for answers, to a question no one could seem to answer. Where did our little boy go??? We were told we were overreacting as new parents and this was just a developmental phase. Instinctively, my wife and I knew there was something wrong but we just didn't know what it was. We just knew this was not the little boy anymore. The one we had been raising the for his first 18 months. We also had another child, during this time frame, to compare. Finally, after a preschool teacher agreed something was wrong, only then was our physician finally ready to listen.
We were amazingly blessed or fortunate to have moved to Greenville, NC for my schooling. Unbeknownst to us, there were many exciting and new treatments being used in the treatment of Autism. The Occupational Therapy Department at East Carolina University was being recognized internationally for their protocols to treat Autism. This information and training had spilled over to into the community. Diagnosis was being came through a litany of tests performed by many individual experts in their fields. Once testing was complete, these experts sat down at a round table to discuss their finds and come to a consensus. The consensus was Autism.
We were devastated. It was like a death. Now our future was unknown. This was a frightening time. Sadly, all we knew of Autism was what we saw in the movies from Rain Man. I ended up dropping out of grad school because, I couldn't focus on anything. I lived in a fog for months. I went through the gambit of emotions, angry, fear, feeling sorry for myself, depression, etc. It was numbing. Fortunately, I had a great spouse whom took the lead and got us plugged into an Autism support group and set up all the therapies recommended. There is something to be said about being around people who get you. The support group and all of the healthcare workers helped snap me out of my funk. They provided a clear guide for where we wanted to go and how to get there. But the outcome was still unknown.
The unknown world
We were plugged in and working diligently to help our son. A new pattern of life and routine emerged. We chose to have the diagnosis out in the open. We knew it would be important, for now his two other brothers, to understand what was happening. We need peoples understanding and support. Keeping it a dirty little secret wasn't an option. We saw other families treat their diagnosis this way and knew this wasn't self serving behavior. Additionally, we needed our son to develop coping skills to live in the real world. We've all heard the saying, "It's a cruel world!" We knew the world wouldn't care he has Autism. The world would want to know, can he get the job done or can he work with others???? This was our mission, to have Autism not be a crutch or an excuse.
The school system
We were fortunate to afford private school in the beginning. Don't let this fool you into thinking we had it made. Private schools were just as under prepared to deal with our son as the public schools. The difference is the school recognized they are working for you and not the state. The schools were great and they really tried hard to accommodate. But the teachers got frustrated at times which strained the relationships. By age nine, we made a decision to start homeschooling our three children to reduce stress and increase the quality time with our kids. Wow!!! What an undertaking for my wife at the time. Not only would she be teaching three children but one with Autism too! The boys, as well as my wife, were going to have to learn a whole new process and routine. Not an easy undertaking is an understatement. Like with the diagnosis, we got plugged in with a support group. There were many tears shed by all involved over the years. My wife was a warrior and attacked this new mission like her life depended on it. Or at least the kids lives depended on it. I can't say enough about what she was able to accomplish and still is today.
The Finish Line
So, here I am this Sunday May 21st, 2017 and I'm reflecting over the past 14 years of my life. I am post 24 hours of experiencing the high school graduation of my son and on time I might add. His last year of high school, he was also dual enrolled in college and will be attending community college full-time in the fall. All those unknowns. All those questions have been answered. I look back at all the people in our lives that help make this dream a reality. I wish I could put into words what you mean to us. The best I've got is "Thank You." I can say this doesn't even begin to express how we all feel.
What Ive learned along the way
Autism has redefined how I see the world today. It completely torn down my world. Autism has taught me how to communicate in more effective and creative ways. I have learned no two people learn nor communicate the same way. It is up to me to learn others style to convey information effectively. It made me more conscientious and to focus on the details of communication presentation.
Every Aspy (community term) is completely different and are on different parts of the scale. My son has a wonderful gift of being in the present. We non-Aspy's, are always reviewing our pasts and worrying about our futures that we often miss the moment. He has taught me to stop and smell the roses. Be present and in the now. This was a hard lesson for me to learn but learn I did. I relish every moment of my life now and have stopped worrying about tomorrow as much. My son has taught me, its okay not to talk when together and be comfortable in the silence.
Support groups are crucial to your journey. Never be too proud to ask for help, especially from others who have already been there and done it. Don't reinvent the wheel.
Final Notes
This is just one man's story and there are a million others like it. I am not special, just unique. My wish is this will touch one of you and be the word of encouragement you need at this moment. You are not alone and we veterans are here and willing to support you. I appreciate all of you, who took the time to read this. I know your time is limited and important. Cheers!!
