Every time the phone rings . . . I jump – Parenting a child with autism

Wrong Planet columnist Robert Naseef, Ph.D. is a psychologist with 20 years of experience and is the parent of an individual on the autism spectrum.

“It seems like every time the phone rings I jump.” Not a week goes without a parent of a child with autism or another neurodevelopmental condition echoing these words in my office. Is it a phone call from a child’s school asking that the child be picked up early because of a meltdown? Could it be another injury on the playground or in the classroom? Or has my child had another seizure? Otherwise, is a teacher reporting that many assignments have not been completed? Is it another bullying incident? All possibilities to be sure, but maybe it’s not bad news after all, just a friend calling to say hi.

Let’s take a breath and look at the traumatic emotional impact of child’s special needs or disability upon the family. Trauma is the personal experience that involves threat to one’s physical integrity. Trauma can also be caused by witnessing such an event, or by learning about an event that has happened to a family member. Although traumatic stress related to developmental disabilities is only recently appearing in the professional literature, this concept can provide a lens for understanding what families go through. It is a normal and natural response to trauma. But, why does it feel like we are living on alert?

A “bad day” is often lurking in the shadows. For example, if a child has a tantrum in the supermarket that attracts attention, or bolts across the street without looking, a parent or sibling may experience terror-terror that may trigger palpitations, shortness of breath, dizziness, and even flashbacks to life-threatening incidents. A child with autism, for example, unaware of danger, may break windows or dart into a neighbor’s house to search for items they are obsessed with. Those children who are bullied live in fear, and their families live on edge anticipating the next incident.

All family members may experience nightmares and disturbed sleep, as well as a sense of despair. They may spend long periods of time on edge and behave irritably with each other as a result. But families are resilient and with support and effective intervention, some sense of order and predictability is restored to the family members’ lives, and thus the overpowering sense of helplessness and powerlessness can be alleviated. Parents and siblings, as well as the child with autism or other special needs, often need help and support to regulate their emotions during these periods.

Families go on courageously to find meaning in their struggle and love for their child and for life itself. Although families cannot control what happens, we do have a lot to say about how we handle things. So if you jump the next time the phone rings, take a breath, recognize your fear of what may have happened, and remember that your thought may not be true. Let go of your thoughts and feelings of what happened before. Take another breath and meet the moment that is happening-and of course hope for good news from a friend or loved one.

I invite you to let others hear about what helps when you are on edge. Also let me know about issues you would like to be addressed in future columns.

Check out Dr. Naseef’s practice, Alternative Choices