“It seems like every time the phone rings I jump.” Not a week goes by without a parent of a child with a disability 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? All possibilities to be sure, but maybe it’s not bad news after all.
Let’s take a breath and look at the traumatic emotional impact of a child’s disability upon the family. Trauma (in the DSM-IV) 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. While most disabilities are not life threatening, having such a child often produces the same symptoms in families. 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.
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 react intensely—triggering palpitations, shortness of breath, dizziness, and even flashbacks to other even more stressful incidents with the child.
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 can be restored to the family members’ lives, and thus the overpowering sense of helplessness and powerlessness can be alleviated. Parents and siblings may need to help themselves to learn how to regulate their emotions during these periods.
Families go on courageously to find meaning in their struggle and love for their child and 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, remember that’s a normal reaction for people who have been traumatized. You have handled things up until now and you can manage this one. Take a breath, and recognize your fear is about what may have happened. Take another breath and meet the moment that is happening—maybe it’s just a friend calling to say hi.
We invite you to let others hear about your experiences.
Thank you for this piece of understanding and supportive glimpse into my life. Everyday events, take on a different meaning when your child (grandchild) appears typically like a six year old, and in an instant the wiring gets "tripped" and you're caught off guard, running through your mental list of ABA "appropriate" responses, and nothing seems to work. I sometimes need to take my own time out, just to recoup. More times than not, I just want to rewind the episode to make a choice that might result in a more positive outcome. Oh how judgmental I can be about my own behavior, as I navigate this very tricky landscape of autism. It's like carefully walking on a mine field. Past challenges and how they affected my emotional stability drop into my heart and mind. It's like a "setup"! However, during a recent aggressive episode my grandson taught me a valuable lesson. He rubbed the sides of his head and told me he was erasing it from his memory. Then he placed his hands on the sides of my head and rubbed it out of mine. Hand in hand we proceeded to have a spectacular day together! The wisdom of a grandson, comforting his Bubbie (grandmother): priceless!
ReplyDeleteThe Bubbie in the Front Row