In the last of this 7-part series we discuss the fear of the future that parents experience, how to have hope, and how to build resilience with Lisa Dinhofer, M.A., CT., expert on grief, loss, trauma and difficult conversations.
This is a very broad topic. In general, we are moving away from the notion of the stress management paradigm and changing it to resilience building. The notion that we can manage stress so we don’t feel it, is not a reality. We know this from research. Even the term “stress management” has a lot of judgement to it. Human beings experience stress when they are put under conditions that activate stress responses in the brain. Our brain begins to kick out stress chemicals to support the body and brain in unison, so that it can respond to what is supposed to be a temporary circumstance, with “fight, flight, or stay frozen.” This response was designed to keep us safe during a temporary stressor. Autism is not a temporary stressor.
Instead, the new paradigm is “resilience building.” Our brains and bodies will respond when we continue facing stressors. Because we are not hard wired to live under stress continuously, we begin to mal-adapt and mal-function under these circumstances, and there are consequences to that. The good news is that resilience is not built in the absence of stressors, it is built by going through those stressors. Just because autism is “not-reversible” doesn’t mean that we are doomed to a life of non-stop stress, ailments or fear.
People who are very resilient report having optimism and hope. It doesn’t mean that there is a hope that there won’t be bad things that happen, there is an optimism and confidence that when bad things do happen, we will be able to address them because we have the demonstrated success of addressing them before. Every parent of a child with autism, or someone in a relationship with someone with autism, has a boatload of demonstrated success to tap into to remind themselves that “…I cope with intense stuff all the time. Somehow the house is still standing and we are making it through and thriving.” It may not always feel like thriving, but when we look back and say “last year my child wasn’t able to do something that he/she does today” that has happened through your perseverance to keep on, keeping on.
Resilience is also very much directed by our perspective. People who have resilience have a perspective that the situation is going to get better, and getting better does not mean that the autism is going to disappear. It means that I, and my family, and the people around us will continue to get stronger and better and more educated about how to deal with the struggles and stressors that are part of autism, so they will not be as upsetting.
In terms of the common fear that in some form another equates to “…when I am gone, my child might end up living under a bridge…” that is a very real fear and you have reasons to experience that fear. But fear cannot be the driver of our lives. Just as you have put things in place to keep your child safe today, you can put things in place for when you are no longer here. It brings up the very important realization that their welfare and well-being cannot always be exclusively on your shoulders. That’s not sustainable. You have to give up the ego drive that it’s all on you, because it can’t be. Tomorrow we might not be here unexpectedly.
We can tap into the demonstrated successes that we already have to expand our perspective to believe that “…I can, with other people, put enough things in place that when I am not here, or if I am no longer able to care for my loved one, that my loved one’s well-being will continue and it is not solely dependent on me.” Success should not be a tyrant. Flexibility is another stronghold of resilience. If you are willing to be flexible about how you do things and define things, it is a very effective way for managing things that are outside of our control!
When we, as parents of special needs kids, have in place the plans that we think our children may need to sustain themselves after we are gone, it is very comforting. I appreciate the positive direction of the idea that we can build on our previous success and have confidence that we will do what we need to do, and be able to do what we need to do, in order to keep our children safe when we are not here, and to quiet that fear when it comes up.
About Lisa Dinhofer: Ms. Dinhofer, MA, CT, is a certified Thanatologist and communication expert with 18+ years teaching, consulting and coaching experience for effective messaging and situational management following: traumatic death and loss, abrupt change and chronic conflict within high intensity front-line occupations and business environments. She is a seasoned educator within: healthcare, social work, mental health, law enforcement, attorneys, child welfare agencies, emergency response preparedness, forensic and mortuary, clergy, Call Centers, non-profit and corporate environments.
Ms. Dinhofer provides emergency workplace debriefings and training on work-related stress, burnout, compassion fatigue and trauma and the unique issues associated with excessive exposure to graphic material within child-crime and at-risk environments. Ms. Dinhofer also facilitates education on loss issues specific to pediatric and adult foster care. Ms. Dinhofer has been a featured presenter at over 100 scientific and professional conferences in the U.S., UK, Middle East, and the Czech Republic and has facilitated over 250 workshops. She is the owner of Koden Consulting Services and Ingeni, LLC Consulting and has been an adjunct instructor in the Graduate Thanatology program at Hood College in Frederick, MD