I am not convinced that "simple loss" exists. However, for those of you who are parenting children with autism, your experience of loss can feel like a never-ending bottomless pit of sorrow that is continually reactivated. Expected milestones, holidays, family rituals, and simple everyday activities can trigger your tandem losses and your feelings of isolation. Even a simple outing to the grocery store can evoke feelings of pain around your decimated parenting dreams.
In 2009, researchers at the University of Wisconsin found that mothers parenting teens with autism had stress levels that were comparable to combat veterans. While you are in the midst of crisis management, you may find it quite challenging to process and release your feelings of sorrow. I know that I did. You may find yourself living in survival mode and your ego may push you to minimize or discount your own self-care needs. Who has time to practice emotional first-aide when you are required to push a boulder up a mountain every single day?
Dr. Pauline Boss coined the term ambiguous loss to describe the unrelenting and frozen grief that many of you live with as a backdrop to your parenting journey. Your child is physically present, but his or her development has careened wildly off course. Ambiguous loss is a devastating kind of loss because almost everything surrounding the loss remains confusing, unclear and indeterminate.
Ambiguous loss potentially shatters your belief in a fair, orderly and manageable world where mastery is possible. Your new normal is here in all its multicolored glory. As you perceive missing aspects to your child, while having a child who is physically present, you may feel helpless, numb, depressed, disturbed by distressing dreams, guilt-ridden and bombarded with conflict in your intimate relationships. Parenting a child with autism can result in polarized views. You and your co-parent may fall into the trap of spewing absolutes and black and white positions with passionate conviction!
If you find yourself living with some of the symptoms of ambiguous loss, know that it is not because you possess a character flaw. These symptoms are embedded in everyone's experience of ambiguous loss.
There is no such thing as closure when you are coping with ambiguous loss. You find yourself investing in hope, only to plummet back down to hopelessness, again and again. Over time, as a form of self-protection, your ego may prompt you to no longer participate in that cycle.
You may also be stunned to discover that the former people who you easily counted on have gradually disengaged and sauntered away. You may have left your career path, lost your outlets for socialization and are now in the middle of a questioning phase. You question your capacity to properly meet the needs of your other neurotypical children and you wonder who you are becoming when you stare into the mirror?
Principles to Navigate Through Ambiguous Loss
Ambiguous loss shakes life to its foundation.
Ambiguous loss leads you to question almost everything you once more assuredly knew to be true.
This dismantling process is not a punishment. It's a potential opportunity for a growth cycle and sometimes the Divine is nudging you to take your life in a completely different direction.
This process can feel terrifying. It can feel as though you are floundering weightless in space without any recognizable anchors.
Be patient and compassionate toward yourself as you navigate through your child's various developmental stages.
As hard as it is to believe, from the spiritual perspective, there are no mistakes in a perfectly designed and evolving Universe. Make peace with the fact that you are exactly where you are meant to be, doing exactly what you are supposed to be doing for your highest good and the highest good of your family, even when it doesn't look and feel that way from a human perspective.
Know that you are not alone as you struggle to accept the above tenet; that you are in fact part of a tsunami of mothers ushering children with autism through life. This responsibility is a "Divine Calling."
If you are feeling hopeless and stuck, validate that any mother would feel the same way if she had lived through the exact set of circumstances that you have experienced. Just pause for a moment and breathe deeply. Speak to yourself compassionately as though you are your own best friend.
Put the battering rod down and pick up the feather. There are no absolute ways to navigate through ambiguous loss, nor are there any right or wrong feelings. When you validate your experience of ambiguous loss with well-grounded truth, that truth will set you free.
When you validate your personal truth in a non-judgmental manner and the feelings attached to that truth, your ego will have nothing to deny, repress or minimize about your painful feelings.
You will immediately feel freer and lighter.
For a copy of the Validation Exercise that outlines the exact steps to take, please email me at firstname.lastname@example.org and head the email Validation Nutshell.
Karen Hasselo is a passionate advocate for empowering individuals on their personal growth journey. With a wealth of experience and knowledge, she shares valuable insights and guidance through her blog, inspiring positive transformation and well-being.