By Marshal D. Haneisen
If the universe operated on a hardship law of equilibrium, parents of a child with autism would never have to worry about the car breaking down. Parents of a child with chronic medical issues would never lose a home to foreclosure. A parent of a child with emotional and behavior disorders would never become a single parent because of divorce.
But having a child with complex challenges does not mean all other areas of life fall together seamlessly. These families also face typical pressures from financial worries, job stress, and relationship dynamics, all while juggling busy schedules with medical appointments, school meetings, and therapies for their child. Sometimes these parents may feel like it is all too much, which may trigger guilt. And when they see other people’s Facebook posts featuring happy outings, perfectly cooked meals, and fun-filled family vacations, they may feel jealous or sad. It is important for parents to pay attention to these emotions and tend to their own mental health.
Research shows parents typically have higher levels of stress than non-parents, according to Kirstin Brown Birtwell, Ph.D., licensed psychologist at The Lurie Center in Lexington, a multidisciplinary assessment and treatment clinic providing lifelong care for people with autism and autism spectrum disorder, Asperger syndrome, and other developmental delays. Research also shows that parents of children with special needs, including parents of children with chronic illness, exhibit higher levels of stress, anxiety, and depression than the general population of parents, she added.
“It is important for readers to understand that this elevated stress is simply a by-product of the circumstances, an understandable and normative approach to this type of life,” she said. “Logistical, time, and financial demands are out-weighting the parent’s resources. Cortisol levels are at the max all the time, causing physical and medical side effects. The most important effects from my perspective are the mental health concerns.”
When elevated stress exists day-to-day, it may be difficult to recognize signs of mental health struggles. While specific symptoms of different mental health disorders vary, Birtwell suggests a reliable indicator is a general feeling of being unable to manage your emotions well.
“When our emotional resources are low, we are not able to put our best self forward and deal with things appropriately. When our emotional and stress levels are high, cognitive function and processing decreases. We really need to keep ourselves in check and manage our emotions,” she said.
Parents should also consider their typical functioning and be aware if there has been a change. If they feel their emotional response is impacting their relationships, marriage, parenting, or work, they should seek professional help, Birtwell advised.
Two types of coping strategies
Psychologists categorize coping strategies into two groups: adaptive and maladaptive. Examples of adaptive strategies include healthy eating, exercising, and mindfulness meditation. There is a tremendous amount of research on the power of mindfulness to reduce stress, anxiety, and depression. Maladaptive strategies are behaviors such as substance abuse, overeating, ignoring self-care, and catering to the concept of avoidance. These are less-efficient ways of coping that can be quite detrimental over time.
“Parents of autism engage in quite a bit of avoidance as a coping strategy, pushing their own needs aside. That might work for a day, but in the long term problems snowball,” she said.
Seeking peer support can be an adaptive behavior. All parents can benefit from a sense of support from other parents, Birtwell noted. That support might be as simple as going out for coffee with someone or as much as registering for a parenting group series and dedicating oneself to attending all the meetings.
“We have a tremendous amount of resources in Massachusetts. I want to encourage parents to understand it is well worth their time, money, and resources to seek out these supports. It is action in service of your family,” she said.
While adaptive strategies are helpful, it is also important to recognize when to seek medical help. Typically, parents know and understand they are exhibiting mental health symptoms, but often they are focused on just getting through each day. Other parents might convince themselves that they are just going through a rough patch that will change in time. In either situation, the parent’s mental health struggles are left unaddressed and untreated, she said.
Because mental health is such an important factor for parents and caregivers, many community support websites, such as Autism Speaks (autismspeaks.org), the Massachusetts Down Syndrome Congress (mdsc.org), and Lives in the Balance (livesinthebalance.org), address the subject and provide links to resources. But discussing mental health with a medical professional is key to personalized care. Parents don’t need to meet stringent cutoffs for depression and anxiety, they can have subclinical needs that may benefit from treatment, Birtwell said.
“I definitely think more and more mental health awareness is appearing in general outpatient and annual visits. When interfacing with a medical professional and they ask questions about your own well-being, be as honest as possible,” she added. “Despite the context of having an individual with high needs, it is of utmost importance not to kick the can down the road. Systemic change can really help.”
Birtwell recommends the website parentshelpingparents.org, which includes a 24-7 stress line for support and online parent support groups. Websites allow parents to poke around and not feel stigmatized. She encourages parents to get connected with their community, whether geographic or by their child’s diagnosis. This connection could include Facebook groups, which can be a place for sharing triumph and hardships.
“Parents are much more apt to try and deal with negative emotions and not say they need more social support. We really need to take action. It is really important for parents to realize their well-being is directly impacting their children. There is also an important correlation between a parent’s mental health and their child’s. So it is important to take care to be your best self,” Birtwell noted.
With appropriate mental health care, parents of children with special needs may be able to become more aware, appreciative, and in the moment, which is a powerful parenting strategy. They may develop a fresh appreciation for more joyful parenting moments. Birtwell said mental health care can help parents reconnect with all facets of life that are important — leisure, growth, personal life, and parenting.
Marshal D. Haneisen is a freelance journalist, writer, and creative writing instructor. She lives in Fitchburg with her husband, son, and a variety of pets. Her son has a dual-diagnosis of Down syndrome and autism, and her experience as a parent of a child with special needs inspires some of her writing for various publications, as well as for her blog, thespecialneedsfiles.com. Information about Marshal’s writing and workshops can be found marshaldhaneisen.com.