The Invisible Cost Of Caring For A Child With A Health Condition
When Brittany Martinez’s son was 1 year old, she and her husband noticed that he wasn’t meeting some developmental milestones. They had him evaluated, and he was diagnosed with autism.
The diagnosis, Martinez told HuffPost, “has impacted every aspect of his life, and our life as a family, as my son is now 14 years old, nonverbal and still has difficulty understanding the world around him.”
The diagnosis also affected Martinez’s mental health.
“When my son was first diagnosed, I felt overwhelmed and isolated. I would often get lost in caring for his needs without realizing the toll his constant care was having on my own mental health, until I fell into a deep depression,” Martinez said.
She neglected her own need for care until her husband and grandmother eventually brought her to the hospital for help.
Since then, Martinez has relied on a psychiatrist, antidepressants and support from the organization Autism Speaks, in addition to the support of her husband and grandmother.
Martinez’s experience is not uncommon among parents of children with autism or other health conditions. A recent study from the University of California, San Francisco found that 50% of mothers of children with autism had clinically significant symptoms of depression, compared to 6%-14% of mothers of children without autism.
Importantly, the study also found that a “mother’s higher symptoms of depression did not predict an increase in children’s behavior problems over time,” said Danielle Roubinov, the study’s lead author. Roubinov told HuffPost that this finding should help alleviate feelings of guilt a parent might have about their own mental health struggles affecting their child.
“When there is a child with special needs, understandably a lot of resources are directed to the child,” Roubinov said. “Equally as important is the support for caregiving parents.”
But parents who are fully absorbed in caring for a child may not feel able to ask for help. If they believe their child’s needs must come first, then the parent’s needs never get addressed.
Caregiving is an isolating experience for parents
Taylor T., who asked that HuffPost withhold her last name for privacy reasons, has a daughter who was diagnosed with B-cell acute lymphoblastic leukemia at 20 months old and is currently undergoing chemotherapy treatment. (The treatment is 29 months long, and “she has a great prognosis,” Taylor said).
“So many people say, ‘What are you doing for yourself?’ which is a nice sentiment, but it just further divides me and those people,” Taylor said. “What they don’t understand is that I don’t have the time, the energy, or the mental capacity to do anything for myself. I am with my daughter quite literally keeping her alive 24/7.”
While she experienced anxiety before her child’s illness, her feelings of terror were both amplified and silenced by her daughter’s cancer diagnosis.
“I have had multiple panic attacks while alone with her in the ER in the middle of the night or if something wasn’t going as planned during a chemo infusion. The hardest part is hiding those attacks, sitting down and handing her an iPad for 15 minutes, and trying to recompose myself,” she said.
Taylor and other parents like her say that receiving a serious diagnosis divides their lives into a “before” and an “after.”
“I used to be outgoing and make friends easily,” said Taylor, explaining that she now walks around “feeling like no one understands me or what we’ve been through.”
Except for the people who do: other parents facing the same diagnosis.
“Support from other moms going through the same or very similar situations has been better than any therapy I could find,” Taylor said. “I met a friend very early on who has a daughter who was just a few months ahead of us in treatment. We instantly connected and she became a constant source of understanding, I truly do not think I could have gotten through as well as I did without her.”
Along with her friend, Taylor regularly meets with a group of other “cancer moms” via video call.
“To have a group of women who really understand our day to day, and not only the medical aspects, but the emotional aspects, is priceless,” she said.
Some parents in this position find support on social media
For Laurie Foos, the mother of a 15-year-old son who has autism, anxiety and developmental disabilities, social media has provided a source of support.
“I have spent countless hours following the threads of Facebook parent support groups that were often a lifeline, in order not only to understand why a particular behavior had cropped up, but about the workings of a school district and what services were available to him and why,” she told HuffPost.
Foos said that social media, “for all of its issues, often provides a safe space for parents like myself who might not know where to turn for answers. Many of those people, whom I have never actually met in real life, have given me strength and courage and made me feel less alone.”
“It’s often hard for me to ask for help,” continued Foos, “but I do my best also to stay connected with other parents of children with developmental disabilities, as there is an understanding there that transcends words.”
Brittany Sheldon, whose 3-year-old son has the same cancer diagnosis as Taylor’s daughter, and who also has a 7-year-old son with Crohn’s disease, told HuffPost that she sees a therapist and takes medication for anxiety “to get through the days,” as well as receiving essential support from fellow “cancer moms.”
A social media group organized by another mom has proven invaluable to Sheldon.
“It makes you feel not alone,” she said. “They were all feeling the same emotions — the fear, the PTSD. Sometimes I would feel like I’m going crazy, but then they’re feeling it, too.”
Parents also can experience PTSD following their child’s diagnosis
Post-traumatic stress disorder is not uncommon among the parents of children with serious medical conditions. A recent study found that when children with heart rhythm problems were given implanted cardioverter-defibrillators, afterward, nearly half of their parents met the screening criteria for PTSD. By comparison, 12% of the children who underwent the surgical procedure met those same criteria.
Lauren Schneider, a psychologist at Stanford and lead author of the study, told HuffPost that the parents who met the cutoff for PTSD “are likely experiencing distressing traumatic stress symptoms.”
Schneider said the study identifies “a need for increased mental health screening for pediatric patients and their parents within medical clinics.” She hopes that the results of the study encourage parents to seek treatment if they are struggling.
While neither of Sheldon’s sons has had heart surgery, she said that the study’s findings hold true in her experience, acknowledging trauma that parents endure alongside — and perhaps on behalf of — their children.
“That’s what we do. We’re there to support our kid, to make it not scary,” Sheldon said.
Taylor also spoke of hoping to shield her daughter from the trauma of her diagnosis by taking it on herself.
“My greatest hope is that the PTSD that has and will go along with this experience is mine and my husband’s to hold,” she said.
While heart conditions, cancer and autism are vastly different diagnoses, several themes recur as these parents tell their stories: the isolation they feel, the struggle to attend to their own emotional needs when the needs of their child are so great, and the comfort they can find only in the company of others who understand what they’re experiencing.
Where to get support
If you are the caregiver of a child with a serious diagnosis, there are likely organizations specific to your child’s condition that can connect you with support groups and other services. Examples include Autism Speaks, the Leukemia and Lymphoma Society, the Juvenile Diabetes Research Foundation, United Cerebral Palsy and Parent to Parent.
If you’d like to connect with others locally, ask the person who coordinates your care at the hospital or doctor’s office if they can put you in touch with other families. A family life specialist or social worker may be able to offer referrals as well.
You can also start your own support group, either in person or virtually. The group Sheldon is a part of uses the Marco Polo app so that members can video chat with one another.
Individual therapy may also be helpful. The American Psychological Association has a locator tool that lists psychologists in your area or who offer telehealth, and who take your insurance. Many therapists are now practicing online, and companies like Talkspace can help you find a provider, as well. Other affordable resources include training clinics, providers with sliding-scale fees and community-based organizations.
“Parents sometimes feel guilty for struggling,” said Schneider, who hopes that the PTSD study “normalizes the difficulties some parents experience, alleviates their guilt and ultimately encourages them to consider an evaluation and possibly treatment, or at least helps them to initiate a discussion with a provider.”
Telling a friend or family member that you need help can also be a good start — even if they don’t totally understand what you’re going through.
“Don’t be ashamed or afraid to say that you are mentally and emotionally exhausted,” Martinez said.