I have just finished having my yearly tradition of what I like to call, “a good cry.” It’s my son’s fourteenth birthday, and for the past ten years, I have set aside the morning hours of this day to participate in this cleansing ritual.
My son, Ben, isn’t deceased; he has autism. Not the “you-wouldn’t-know-it-if-I-didn’t-tell-you” kind. Ben has “full-blown-could-melt-down-any-moment-take-off-all-his-clothes-and-run-into-the-woods-requiring-search-helicopters-and-bloodhounds-to-find-him” kind. You get the picture.
As a therapist, I work closely with the Kubler-Ross stages of grief:
- denial
- bargaining
- sadness
- anger
- acceptance
With acceptance usually comes closure; that feeling of relief that the person isn’t suffering any longer, a feeling that you can now let go of the worry that accompanies the loss and go on with living your life.
Ben developed typically until age two, then lost skills until his autism diagnosis at age four. Sometimes I wonder if a traditional loss would’ve been easier. There would be closure. With autism, there is acceptance, but no closure. My grief is what experts call “cyclical.” With autism, as well as many other chronic illnesses and disabilities, the caregiver’s grief over an absence of perceived “normalcy” often recirculates through these five stages.
The combined training I have received as a mental health counselor and autism mom has taught me the following about handling grief in the “Land of Autism.” I’ve organized them according to the words from the wise women who have accompanied me on this journey.
“If you don’t deal with it, it will deal with you.”
This statement is about more than denial. In my counseling practice, I primarily treat parents raising children with autism. While every parent goes through the denial stage, whether it is for ten minutes or several years, “dealing” with our grief requires more than just accepting the diagnosis. We need counselors, friends, and professionals to help us with parenting skills, marital strife, and self-care. After the diagnosis, I took off like a racehorse out of the gate, doing all that could be done to help my child. Two years into it, my son was thriving in a wonderful program, but I was in a fetal position on the couch with severe depression and panic attacks. Take self-care seriously.
“What you can anticipate, you can plan for.”
Being aware of the five stages of grief is helpful because we can tell ourselves it will pass when we are experiencing it. We also need to be aware of “anniversary grief.” This is where an event can trigger a grief response that can correlate to a specific date or time of year. For some parents it’s their child’s diagnosis date. For me, it’s my child’s birthday. I now anticipate this event and make sure I set aside time to process my sadness.
“It is what it is.”
I don’t want to cry on what is supposed to be a happy occasion. The first few years I told myself I was being ridiculous and needed to get over it. This did not help the situation and I found myself suppressing sadness that would end up bubbling over into other areas of my life without warning. Acceptance is not only about our kids, it’s about accepting ourselves and our feelings. Set aside the time you need to grieve.
“Never, never, never give up.”
Autism itself can be a tremendous stressor on families, and it tends to be a leavening agent that brings all the problems that already existed in our relationships “to the top,” so to speak. I have personally had to save my marriage, face my demons, examine my beliefs, eliminate bad habits, make new friends, and change careers. Later today, I will process my mixed feelings about the birthday, in private, with my husband, and we will be closer because of it. And I will wake up tomorrow with a renewed resolve to never give up.
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