Prioritizing Quality of Life: A Reflection on Supporting My Autistic Son
This single concept of truly breaking down the components and supports for ensuring we honor the person’s quality of life may be the most impactful thing I’ve ever experienced.
Quality of life focuses on a person’s strengths and interests, not their disability. The “QOL” or quality of life approach helps you learn to respect what a person wants, needs, and values in life…
For the past two and a half years, our family has struggled with my son, Jackson’s, behavior, aggression, “epic meltdowns,” lack of compliance… I need him to accept ‘no,’ wait, respect boundaries are exact words that have come out of my mouth.
These were my targets, my wants, my needs to be met… these skills being taught would make my life easier, make him be a more respectful member of society, be more successful… Or so I thought.
Even though I truly, in my heart of hearts, was seeking all of these things for what I believed would make his life better… was I looking at his quality of life or foolishly my own?
I don’t think there’s a right or wrong answer here, so I don’t want to argue points, but I DO think looking at the “QOL approach” has shifted my perspective.
Is this worth the power struggle because he needs this skill to be safe? OR Am I standing my ground because following this directive/ acting this way fits in with what society expects of him?
What matters most?
His quality of life, his emotional well-being, his self-peace.
Is this important for Jackson OR important to me?
I need to ask myself this question, learn to bend, and understand the difference…
I am breathing for the first time in over a year, friends.
Quality of life over our wants and needs for our children… It may sound silly, but I will tell you it changed my life.
I wish someone would have talked to me about this years ago. There is no black and white, right or wrong in special needs parenting… but there is “is this what I want, or is this what he needs” and there’s power in that question.
Written by Amanda Deluca of Jackson’s Journey, Jackson’s Voice
