Our Cycle of Emotions

I went to a rather mind opening workshop last week presented by the Family Resource Network in Stockton. Based largely on the research of Ken Moses, Ph.D., we were taken through the journey of emotions experienced by families raising special needs children.

Turns out we’re grieving. To me, hearing that my neurotic behavior over the past two years is normal was quite refreshing.

I’ve heard about the stages of grief before: denial, anxiety, fear, depression, guilt (my all time favorite), anger, isolation and finally acceptance. What was enlightening for me is the notion that going through these stages is not only normal but necessary to emerge a stronger parent.

In a short video clip from his parent support group, Dr. Moses asks the group, “Think back to when you were anticipating the birth of your child. Who or what was the child to have been for you?” I’ll have to admit, many of us in the seminar welled up after contemplating that one. The question hits us at the core. Our child’s disability impairs our heart-felt yearnings and rattles our sense of being. We grieve the loss deeply.

We become drained and fearful of the challenges ahead and the internal changes we are forced to make. We must raise the child we have while letting go of the child we dreamed of.

Denial is used to buy us the time needed to blunt the initial impact of our shattered dream. It holds back the inevitable long enough for us to discover the inner strength needed to confront what has happened.

Anxiety is the inner source of the need to act. Before long, we come to the terrorizing realization that we, not some professional, are our child’s medical, education and therapy managers, even though we may have minimal knowledge of these areas. The monumental task is overwhelming.

We are guilty about the cause, about our genes, about our anger, about our various beliefs surrounding why this terrible thing has happened. Dr. Moses said, “Guilt is a feeling state that has become so identified with being neurotic that people feel guilty about feeling guilty.” He claims, “The guilt-ridden person is saying that they are accepting responsibility for everything. It feels better to do that than to believe that they have no influence on anything.”

We become depressed as the waves of despair and anguish wash over us and there is sometimes uncontrollable sobbing. We are unable to imagine that things will ever get better – we’re hopeless. A picture of Glenn Close curled up in a corner flicking on and off the light in Fatal Attraction comes to mind. When we are confronted with a disabled child, what used to make us feel like competent and capable parents gets challenged in the darkest of ways. We no longer can define ourselves by how we measure up to parents of typically developing children. Our goals for our children and our standards for ourselves are forced to change.

We are angry at the harm done to our child and the shattering of our dreams. We are angry that our internal sense of justice has been violated. “What, after all, is fair if this can happen?” Dr. Moses even raises the awareness that we can be angry toward our child for putting us in this position. Then, of course, we feel guilty for our unreasonableness because we know it wasn’t the child’s fault.

We can be so embarrassed and judged by our child’s behavior that we isolate ourselves to escape the pain. Some of us are devastated by the looks of annoyance and by family members, teachers and friends who don’t understand. They imply that our lack of good parenting has caused the outbursts, our special diets are weird, our inability to control our child at the table is unthinkable and we hide in the safety of our homes.

Lastly there is acceptance. We acknowledge the loss and the feelings of the loss. We still go through the cycle of emotions, but they don’t rattle us the way they used to. We bounce back sooner. We live with the struggle and grow from it.

The good news is that we are normal and are growing into stronger more competent and empathetic people through our trial. We are being refined by fire. We are stronger in our faith, stronger in our love, in our commitment and we are overcoming.

There is much joy in raising a child with autism. I revel in Alex’s accomplishments: when he looks into my eyes and gazes longer than expected, when his words turn into phrases that make sense, when I make it through Target without wanting to lose him in the toy section, when his teacher says, “He had a good day today” and especially when I hear the longed for words “I love you”.

To find out more about how the Family Resource Network can support you, go to www.frcn.org or phone 209-472-3674 or 1-800-847-3030.