Autism is a disorder that affects the entire family. Parents often times put their own needs and wants "on the back burner" or "off the stove completely." The child with Autism, becomes the "center of the universe" of that family. All lives now begin to revolve around that one foundational changing event of "autism spectrum disorder".
That, "Off the stove completely," works for a while. Especially in the early days, and months of what I have come to call, the "Shock and Awe" phase of dealing with the autism diagnosis and trying to get a handle on what this might mean for the child and the other family members. However once the acceptance begins that this is indeed a "marathon" and not a "sprint" some re-grouping and re-tooling needs to take place. There must be a "shift" in the family if its' members are to move beyond just "survival mode."
For me that "re-tooling" will be a lifetime process. Acceptance is not something that comes easily to Midwesterners such as myself that grew up believing that "if you try hard enough, you can do anything." "If you work hard enough and long enough, you will eventually succeed at whatever you put your mind to." Either that or you will change what your goal is. For me I knew that "trying harder" works. I remember telling myself, "Rome was not built in a day, and Autism would not be eradicated from our lives in a few months. Surely by two years or five years at the most, autism would be just a small speck in the rear view mirrors of our lives." I had no idea what I was in for.
The "re-tooling" involves moving through the grief process of giving up the child you thought and dreamed that you had, and the acceptance and embracing of the child you actually have. Moving through the grief process is painful. Maybe it begins with the first School Open House where other parents talk of how their child will become a firefighter or a doctor. I found myself wishing that I could regain that "starey eyed" look in my eyes. That "anything is possible" look of hope and great expectations. You know that with each coming milestone in your child's life there will be another "letting go" of hopes and dreams and exchanging them for other dreams and different hopes.
I would never see the world again through the same eyes. Out at the corner of our street, the same loner guy, belly hanging out, sitting aimlessly at a bus stop in the middle of the day. The person that I used to feel sorry for... But now, I saw that man as one of the greatest miracles! This guy was so amazingly talented and capable! Oh that my son one day would be able to use public transportation by himself! The ability to wait at a bus stop away from the traffic! Interpreting the bus schedules and ticket prices and all the other countless steps that I am now painfully aware of...that stands between my son and the ability to one day, accomplish all that this guy already has. This guy is so gifted and talented! How lucky he is! Do I even dare to imagine?! Wow, that one day, my nonverbal son would be as amazingly capable as this guy! That would be a great miracle!
If you are like me, you stop yourself from thinking about anything but the "present moment". Any thoughts of the future, even next week...or tomorrow for that matter, is just too frightening to speculate about right now. You realize that the present moment is all that you are able to handle without breaking down, and retreating into a curled ball, in your closet.
"Re-tooling" is a necessary shift that must be made in order to equip ourselves as parents for the "long haul". For each of us as parents, this re-tooling may be different. For me it is one of "baby steps". Slowly almost imperceptibly changing course and now steering life in a new direction. That new direction must lead to moving beyond "survival mode". If I am to be able to find happiness and peace of mind in this life, I must re-evaluate and reprioritize to change what I can in myself and my day, that will help me to do more than just survive.
This blog and those it links to, will be about self care for parents of children with Autism Spectrum Disorder. For more information please follow this link: http://selfcareforparents.blogspot.com/
That, "Off the stove completely," works for a while. Especially in the early days, and months of what I have come to call, the "Shock and Awe" phase of dealing with the autism diagnosis and trying to get a handle on what this might mean for the child and the other family members. However once the acceptance begins that this is indeed a "marathon" and not a "sprint" some re-grouping and re-tooling needs to take place. There must be a "shift" in the family if its' members are to move beyond just "survival mode."
For me that "re-tooling" will be a lifetime process. Acceptance is not something that comes easily to Midwesterners such as myself that grew up believing that "if you try hard enough, you can do anything." "If you work hard enough and long enough, you will eventually succeed at whatever you put your mind to." Either that or you will change what your goal is. For me I knew that "trying harder" works. I remember telling myself, "Rome was not built in a day, and Autism would not be eradicated from our lives in a few months. Surely by two years or five years at the most, autism would be just a small speck in the rear view mirrors of our lives." I had no idea what I was in for.
The "re-tooling" involves moving through the grief process of giving up the child you thought and dreamed that you had, and the acceptance and embracing of the child you actually have. Moving through the grief process is painful. Maybe it begins with the first School Open House where other parents talk of how their child will become a firefighter or a doctor. I found myself wishing that I could regain that "starey eyed" look in my eyes. That "anything is possible" look of hope and great expectations. You know that with each coming milestone in your child's life there will be another "letting go" of hopes and dreams and exchanging them for other dreams and different hopes.
I would never see the world again through the same eyes. Out at the corner of our street, the same loner guy, belly hanging out, sitting aimlessly at a bus stop in the middle of the day. The person that I used to feel sorry for... But now, I saw that man as one of the greatest miracles! This guy was so amazingly talented and capable! Oh that my son one day would be able to use public transportation by himself! The ability to wait at a bus stop away from the traffic! Interpreting the bus schedules and ticket prices and all the other countless steps that I am now painfully aware of...that stands between my son and the ability to one day, accomplish all that this guy already has. This guy is so gifted and talented! How lucky he is! Do I even dare to imagine?! Wow, that one day, my nonverbal son would be as amazingly capable as this guy! That would be a great miracle!
If you are like me, you stop yourself from thinking about anything but the "present moment". Any thoughts of the future, even next week...or tomorrow for that matter, is just too frightening to speculate about right now. You realize that the present moment is all that you are able to handle without breaking down, and retreating into a curled ball, in your closet.
"Re-tooling" is a necessary shift that must be made in order to equip ourselves as parents for the "long haul". For each of us as parents, this re-tooling may be different. For me it is one of "baby steps". Slowly almost imperceptibly changing course and now steering life in a new direction. That new direction must lead to moving beyond "survival mode". If I am to be able to find happiness and peace of mind in this life, I must re-evaluate and reprioritize to change what I can in myself and my day, that will help me to do more than just survive.
This blog and those it links to, will be about self care for parents of children with Autism Spectrum Disorder. For more information please follow this link: http://selfcareforparents.blogspot.com/
