I know firsthand what it is like to live and love someone struggling with a neurological disorder. I have a front row seat to the psychological turmoil it has on families because my 17 year old son has a diagnosis of Autism Spectrum Disorder, a neurological and neurodevelopment disorder.
What are few unexpected twists living with someone diagnosed a neurological disorder?
Life is busy, especially in those early years.
Essential appointments and countless hours of skill rebuilding and searching for the right medications
Lots of reading -- books are wonderful sources that provide hope and sometimes disappointment.
Surrendering feels like failure.
Lessons are learned and deeply rooted for survival.
Not everyone will understand including family and friends.
Advocating is important and also consuming.
Understanding, acceptance, and education are vital for adapting.
This shift in perspective can open doors and help everyone.
I am aware of the smiles, lessons and flexibility needed to live this extraordinary life. As a psychotherapist I have had the privilege to meet and help clients and families like mine, who are lost in the struggle.
This personal journey has given me the motivation and desire to bring awareness to those family, caregivers, and healthcare workers who recognize that exceptional and extraordinary people are deserving of meaningful and productive lives.
Accepting and understanding must first come from within.
Often when we care for these extraordinary humans, we feel overwhelmed with responsibility. Care-giving can create burnout and compassion fatigue if we do not find a healthy balance.
3 tips to consider to avoid burnout and compassion fatigue:
Take time for yourself
Talk about it with a therapist or a friend
Exercise