It's The Spooky Month: Lean In
Plus: How the shutdown will affect disability services; Ohio parents struggle with child care; U.K. study finds a third of medical parents are suicidal
My husband and I got six minutes into Netflix’s Stranger Things before we turned it off.
It was 2016, our young twins were safely in bed and everyone had been telling us we needed to watch the binge-worthy show. But we got to the first jump scare of the boy riding his bike home in the dark and decided: NOPE.
We had had enough real trauma involving children to last a lifetime. We’d seen true terror on the faces of our own children as they underwent medical procedures or even as they encountered ordinary life struggles that their brains told them were cause for panic.
But now our boys are preteens and each Halloween they want more and more scariness in their life. As we head to a roller coaster or other jitter-inducing attraction, my son Malachi and I will argue back and forth with him saying: “fun, fun, fun!” as I say: “scary, scary, scary!”
Thanks to Chrissa Paradis, another medical mama in our community, we got to attend our first haunted house this year: ScareGrounds PDX, three fully accessible haunted house attractions.
At first, I hated it. My shoulders — which are already debilitatingly tense from stress and lifting a 70-pound person multiple times a day — felt like they were up to my ears as we walked into the first house. We passed the creepy things and jumped at the loud, sudden noises. All I could think was: How fast will the boys let me get out of here?
But then something happened: I screamed. Or rather, I let myself scream… and then giggle. After that, it was a lot more fun.
As parents to kids with medical emergencies — or the isolating subset of folks who have to deal with the real possibility of child death — visceral terror is not funny or theoretical: It’s some of the most real moments of our lives.
But perhaps, even for us, recreational fear can be healthy.
“As someone with a heavy amount of stored trauma — screaming, the act of literally screaming and releasing — you feel it free some of that,” says medical mama Paradis, producer and director of guest services at ScareGrounds PDX. “It really does have a restorative nature.”
Paradis says it has also been interesting to see how her staff have benefited from creating scares. She says about half of the cast members are LGBTQ and have experienced a lot of struggle in their lives — either coming to terms with themselves or with their family and friends’ reactions.
“They all find that creating the scares and taking that control is very healthy for them,” Paradis says. “So we kind of see it on both sides of how this environment provides some very primal healing.”
She says her medical motherhood journey has influenced a lot about the attraction. All of the sets are fully wheelchair accessible, actors will never touch the audience and there are emergency exits for anyone who isn’t having fun anymore. But an awareness of disability is also part of the storyline. Paradis says that when the team designs haunted houses that are asylums or abandoned hospitals, the fright factor isn’t being stuck in a place with people with mental illness, but rather a maniacal doctor who just might make you his next patient….
It turns out science confirms that screaming, shaking, ghost stories and other forms of recreational fear have therapeutic properties. Much like how wild animals will “shake it off” from head to tail after escaping a predator, human nervous systems can benefit from physical manifestations of trauma and even “scream therapy.”
As Paradis says: “There definitely are some positives to putting yourself in a safe mode where you get to have some genuine scares.”
Before having her daughter, Paradis liked scary movies. But now that she’s been scared out of her mind in real life, even the most well done horror movies don’t do it for her anymore. “My peak is so much higher now than most people.”
Paradis turned 20 when her daughter was a toddler on the brink of death due to an infection. Jasmine survived several medical procedures and now lives with disability.
“I found that I heavily disassociated from the emotional impact of what was happening so I could function,” Paradis says. “Which is something I absolutely still do as an adult.”
Paradis says even when her daughter had a life-threatening illness at 17, she pushed away “how are you doing?” questions to wall off her emotions and focus on the work that needed to be done. She had to, she said, to continue functioning at the highest level her daughter needed.
“Maybe that’s not the greatest for other relationships,” Paradis laughed, “but it keeps me from breaking down.”
Paradis occasionally follows groups through her haunted houses for security and quality control. She’s observed that about 90 percent of the time after people scream, they laugh. “It frees something inside. It just kind of unlocks some of that tension and heaviness.”
If you want to try being scared for fun this Halloween, The Washington Post has some tips. You can try to start slow with children’s movies like Spirited Away or keep the lights on during a scary movie to maintain some distance. Or, go to a haunted house like Paradis’ and let yourself scream. Just be sure to go with friends — it’s always better to have someone to cling to in times of stress.
As for me, I did recently try Stranger Things again. The subplot of medical parenthood was certainly triggery, but safe on my couch, away from the hospital, I could enjoy the show.
This piece was first published in Oct. 2023.
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From Disability Scoop: “What The Government Shutdown Means For People With Disabilities”
While many services will continue, Congress’ failure to fund the government could have big implications for people with disabilities who depend on a wide array of federal programs.
Democrats and Republicans in Congress were unable to reach an agreement on spending by the start of the government’s new fiscal year on Wednesday, triggering a shutdown. As a result, many federal workers are off the job while agencies maintain only services deemed essential.
[…]“Programs like Medicaid, Medicare and Social Security will continue to be funded because they are mandatory programs. But the vast majority of disability programs, including all of those funded by the Administration for Community Living, are discretionary programs that would be impacted by a shutdown,” said Alison Barkoff, a professor at George Washington University who led the Department of Health and Human Services’ Administration for Community Living under the Biden administration.
During the last shutdown, which extended from December 2018 to January 2019, the effects were widespread. There were disability providers that were unable to hire new direct support workers because they couldn’t access the E-Verify system, some rental assistance contracts for people with disabilities were not renewed and furloughed parents of children with disabilities struggled to pay for therapies.
[…]Ultimately, the impact on disability programs could depend on how long the shutdown lasts, advocates said.[…]
• From The Ohio Newsroom: “Parents must become ‘squeaky wheels’ to find special needs child care”
[…]Finding quality, affordable care for any child is hard enough. It’s often more difficult when a family lives in a rural area. When special needs are added to the search, workable solutions become even more elusive.
[…]Child care centers in Ohio must maintain a minimum ratio of adults to every child, which fluctuates depending on the age of children in care.
But parents and providers said special needs children typically require more adults on hand and specialized attention. These providers often need additional training and certification.
[…]When it comes to child care for special needs kids, parents said there often isn’t much available.
“I can’t really find available (child care) spaces that have people that are properly trained,” Curtin said.
She said she appreciates the work of developmental disability boards, but wishes the help went further.
“When (your child) gets diagnosed, they give you a bunch of paperwork,” she said. “They tell you to go on your own, and you have to figure it out on your own.”
[…]Even though they eventually found a solution, Brooke [Magyar] said the family’s months-long search shows the system of support services and child care for special needs kids is broken.
“Everything feels like a speakeasy. You have to hear about everything through word of mouth and try to figure it out on your own,” she said. “There’s no one place to go to say, ‘Hey, I need help, I’m a parent of a special-needs child.’
“You shouldn’t have to dive down all these rabbit holes and chase these people down to get answers.”
Michael [Magyar] said his biggest advice to other parents is not to give up.
“Don’t be afraid to ask questions,” he said. “The squeaky wheel gets the oil.”[…]
Trigger warning: suicide risk
• From University of Birmingham (U.K.): “"Just throw the damn lifeboat." Short film highlights suicide risk for parents of disabled children”
More than a parent, a short film made by award-winning filmmaker Bhulla Beghal of BlueBell Films and the University of Birmingham, draws on research which found that 41% of parents in England who care for a child with a disability or long-term illness have thought about suicide.
The research was led by Dr Siobhan O’Dwyer, Associate Professor of Social Care at the University of Birmingham, and was conducted in partnership with parent carers. It was published in Archives in Suicide Research.
Dr O’Dwyer’s study was the first to ask parent carers in the UK about thoughts of suicide. It found that among those parents who had thought about suicide, 1 in 3 had made a plan to kill themselves in the last year, but less than half had ever told anyone or sought help.
Dr O’Dwyer said: “The problem is not having a disabled or seriously ill child. The problem is trying to care for that child in a broken system. More than 800,000 children in the UK have disabilities or long-term illnesses and every day their parents have to fight to get them even the most basic support. Whatever system you look at – the NHS, social care, education, benefits – it is failing disabled children. And it’s their parents that have to plug the gaps.
[…]To accompany the film, members of the public are being encouraged to write to their MPs to call for policymakers to improve the health, social care, and SEND systems, to ensure disabled children and their parents get the support they need.[…]
If you or someone you know is thinking about suicide, help is available. In the U.S., dial or text 988 to connect with the Suicide & Crisis Lifeline, available 24/7.
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