Cyclical Grieving: What It Means for Parents of Children with Disabilities

Parents of atypically developing children have a never-ending list of things to think about. Some of these concerns are the same as those experienced by parents of typically developing children, while some are unique to parents of children with special needs.

At some point in their lives, a common concern for all people is grief, an intense sorrow or mental suffering due to loss. A unique concern experienced only by parents of atypically developing children, such as those with Autism, is referred to as “cyclical grieving.”

“Grief” is a common and healthy emotional reaction that occurs following the loss of a person, a home, a job, a pet, a marriage, or anything that is of importance. This reaction to loss may take many forms, including physical, such as:

• Anxiety

• Panic attacks, including difficulty breathing and chest pains

• Fear

• Crying/feeling emotional

• Finding it hard to sleep/fear of sleeping

• Insomnia/hypersomnia (over sleeping)

• Fatigue or exhaustion

• Restlessness; feeling unable to sit still

• Difficulty concentrating

• Aches and pains, e.g., headaches, backache, neck pain

• Loss of appetite/comfort eating

• Weight loss/weight gain

  
  

The well-known psychiatrist, Dr. Elisabeth Kübler-Ross, proposed that grief occurs in five stages.

1. The initial stage, denial and isolation, tends to be brief. Denial, a common defense mechanism, serves to buffer the pain of loss. The grieving individual may not want to believe what is occurring and that it is occurring to them. After the initial shock subsides, the grieving individual may experience denial, refusing to believe what has happened, and may remain focused on the past.

2. The next stage, anger, occurs when the individual realizes and understands the gravity of the situation. They may become angry and many seek someone to blame. Anger can be expressed in many ways. While some grieving individuals take it out on themselves, others may direct it onto others. He or she tends to remain irritable, frustrated and short-tempered during this stage.

3. As the stage of anger subsides, bargaining begins with its focus on ways to postpone the inevitable and the search for the best that remains. Grieving individuals faced by a trauma other than death may attempt to negotiate or compromise with GOD in an effort to bring themselves relief.

4. During the depression stage, the grieving individual tends to feel sadness, fear, regret, guilt, and other negative emotions. It may feel to this person as though they have ‘hit rock bottom.’ Signs of clinical depression may be noted.

5. Finally, the grieving individual reaches the fifth stage, where the individual stops fighting the reality of the situation and accepts that it is permanent. While pain may still exist, the overwhelming, immobilizing, or chaotic emotions of earlier stages begin to ease. The individual begins to adapt to a new normal, allowing for both sorrow and joy to coexist, rather than forgetting the loss.

Dr. Kübler-Ross stressed that grieving individuals do not necessarily progress through the stages in the same order, nor does each of them necessarily experience all five stages. Grief is not usually a ‘once and done’ process and is better conceptualized as a spiral. Grieving individuals may exist within the spiral, experiencing various Kübler-Ross stages for periods of time. They may also exist outside of the spiral for periods of time. Months or even years after the loss, individuals may experience a reminder that sends them back to the grief spiral at one of the five stages.

Enter cyclical grieving, a related yet distinct situation that is experienced almost exclusively in parents of children with special needs, including Autism. The word "cyclical" describes the recurrent aspect of one or more emotions that are part of the initial grieving process. These emotions include, but are not limited to: anger, anxiety, denial, depression, disbelief, frustration, guilt, helplessness, loneliness, nothingness, sadness, and shock. Parents experience cyclical grieving intermittently throughout the lifespan of their child, after triggering events which vary from person to person. These can include:

• The child’s health or behavior issues;

• The child’s developmental milestones or age-appropriate expectations for the child;

• Family issues and relationships;

• Aging and retirement concerns;

• Unusual/challenging caretaking demands;

• Professional and programmatic issues (i.e., school and medical);

• Society’s lack of understanding and sensitivity;

• Seemingly insignificant events

Therefore, when the parent of an Autistic child views their child’s same-age neurotypical peer achieving milestones that their child has yet to reach, this can also trigger the cyclical grieving process. The parent may feel deep sadness and emotional pain; much like the emotions they experienced when their child was initially diagnosed. Due to the seemingly infinite number of developmental milestones (e.g., physical/motor, cognitive, educational, social/emotional, communication/speech and language-related, etc.), parents of Autistic children may intermittently and repeatedly experience similar emotions.

I have experienced this firsthand on several occasions with Becca. Though I know that God is in control and that He is able, I am not immune to the very human and normal feelings that come with the cyclical grieving process. Most recently, at Becca's music program, a child who is also nonverbal and was in her class last semester, let's call him Jay, verbally sang along to one of the songs. Everyone celebrated, and Jay's father was so excited and emotional. And of course, the rest of us celebrated with him. But as the class continued, I felt the sting of grief creeping up on me and asking, why Jay and not Becca? And yes, it is difficult - it is a wave and mix of emotions that comes at any time and sometimes at the most unexpected moments.  I was, and I still am, genuinely happy for Jay and for his family. But I would also absolutely love it if Becca went to sleep and woke up saying words tomorrow. And usually, I am fine, but sometimes even small events trigger a sense of deep sorrow. And when these moments come, I remind myself again that God is in control, and that while Becca is not speaking yet, she is impressing me in ways that I never would have imagined possible. My Becca is the most amazing artist, and paints beautiful canvases even without paintbrushes and with limited motor skills. That day in music class was Jay's day. And one day, we will all celebrate Becca's day, too.

The important thing to note about cyclical grief is that it is NOT about grieving the actual child. It's about grieving the circumstances that come with disability - the challenges that the child will experience, the gaps in developmental milestones, concerns about long-term care, safety, and independence. We celebrate our Becca and everything about her, the amazing person that she is. And we are truly excited to see her develop and grow. But because we love her immensely, we also experience intermittent bouts of deep grief related to her development. And it is important to know that this is absolutely normal.

If you are a parent or caretaker of a child with disabilities, Autism or otherwise, know that cyclical grieving is a natural process, and you needn't be caught off-guard when these moments come. Some steps that you can take to cope in a moment of cyclical grief:

1. Acknowledge your feelings. They are valid, they are normal, and they don't make you a bad parent. On the contrary, you are feeling this way because you care so much.

2. Connect to someone in your inner circle, who is part of your support group and who will listen without judgment. Sometimes just being heard goes a long way.

3. Pray about it! GOD sees all things, and knows all things - and even if you don't believe or aren't sure if He is even there, He is willing to meet you where you are. Psalm 34 reminds us that "The Lord is close to the brokenhearted and saves those who are crushed in spirit". Reach out; He wants to hear from you.

4. Speak to a professional who is qualified to help you manage your grief. Grief can feel chaotic. Therapy can help you manage overwhelming sorrow, validate your experience, connect better to your child, and find ways to move forward.

Parenting an Autistic child is a unique journey that calls for immense love, patience, and strength. Remember that an Autism diagnosis does not change who your child is—they are still the same wonderful person. When those moments of cyclical grief come, and they will, focus on celebrating small victories and milestones, and remember that you are doing an amazing job!

For more information on cyclical grief, feel free to read Dr. Blaska's research, from which the Cyclical Grieving Model illustration was derived.