Medical Motherhood
Medical Motherhood
Back to school means something different for medical mamas
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-12:09

Back to school means something different for medical mamas

Also: OPB features my investigation on Medicaid in schools and Travel Oregon publishes my accessible three-day itinerary on the Oregon Coast Dunes area
A four-panel line drawing cartoon titled Where is the Manual for This?!. The first panel shows a mom with bags under her eyes handing a bag to a school staffer and pushing her daughter in a wheelchair. The mom says: “Feeds are in the cooler. The communication device access code is the same as last year. Do you have the suction protocol?” “Yes,” replies the staffer. In the second panel, the tired mom is standing with two other moms while the children walk in a line in the background. The tired mom yells: “And the feed pump is in the backpack.” The second mom yells “I love you.” The third mom yells: “Have a great first day of school.” In the third panel, the third mom says to the other moms: “With the kid back in school, I’ll be back to work full-time.” The second mom says “I’m finally launching my own business.” In the final panel, the tired mom says: “I’m going home to catch up on three months of sleep.”

Three months… or maybe five years! I remember when my kids got into kindergarten and I thought I would get a break. Boy, was I wrong! As you may remember from this episode, in-person school is not a good fit for my kids and I’m still their school support staff for online school. But I’m sending fervent wishes for all of you parents who can send your kids off that your child’s school days are safe, healthy, and RELIABLE breaks from care!

On the second Sunday of every month, we feature Where is the Manual for This?!, an editorial cartoon about the medical mom life from Lenore Eklund.


It’s been an exciting week! Oregon Public Broadcasting’s Dave Miller interviewed me on Tuesday about the NPR story I co-reported on Medicaid dollars in schools. Oregon residents in particular may want to take listen as we zeroed in on some of the changes their new state plan amendment makes possible. You can listen to the Think Out Loud episode here: Medicaid makes changes to make it easier for schools to bill for services to students with disabilities

I’ve heard it is already making the rounds in both school and nursing circles — and parents are using the information to advocate for better services. Check it out to learn more about how Medicaid wants to make it easier for schools to get reimbursed for all sorts of healthcare delivered in school.

Also this week:

If you’re a Pacific Northwest resident or planning a trip here soon, check out my itinerary for an accessible tour of the Central Oregon Coast on Travel Oregon. For three days you and your kiddos could check out the massive dunescape on an accessible buggy, get hands-on with some sea creatures at the Charleston Marine Life Center or tuck in to some grub at The Boat Fish & Chips — a real boat turned into a restaurant! The article is completely packed with more options than you probably even want to do in a single journey — but showcases how much the travel industry is changing to be accommodating and inclusive, even in rugged rural areas. (Special thanks to my dad and erstwhile travel writer step-mom who lived in that area and helped me verify the options!)

If you’re more of a spatial or visual person, be sure to check the itinerary’s Google map for all the spots that we featured. If you end up at any of those attractions, drop me a line! I’d love to see where your travels take you.

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Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From the Des Moines Register (Iowa): “Shortage of youth mental health services in Iowa reaches crisis; families are in despair

In Iowa and across the country, demand for programs and services for some children with mental, behavioral and intellectual disabilities has reached a crisis point, triggering a high-stakes lawsuit against the state and pleas by advocacy groups and providers for action.

Almost three years after the isolation and anxiety of the COVID-19 pandemic began to exacerbate mental health issues for children, wait lists for psychiatric medical institutions for youth, also called PMICs, have reached new highs.

Worker shortages have hamstrung care providers, and some programs are shuttering for lack of financial support. Providers say children have become more suicidal and violent, placing additional pressure on their programs and their employees.

"Definitely we are seeing a level of higher acuity post-pandemic … unlike any of us have seen in our careers," Kelly Garcia, director of Iowa's Department of Health and Human Services, told Watchdog. "This is something we're struggling with as a nation."

Programming also is missing for children placed in the state's care after being removed from their homes because of alleged neglect or abuse. Congress took dramatic steps in 2018 with passage of the Families First Preservation Services Actto shift federal child welfare money away from long-term congregate care settings for kids.

[…]From the state's 2019 fiscal year through its 2023 fiscal year, the number of group home beds for youth in the child welfare system tumbled by nearly half, to 357 from over 660. Shelter beds dropped by 55% and now number just 107 statewide, according to data obtained under Iowa’s open records law from Iowa's DHHS.

The number of licensed foster care homes available to temporarily house abused and neglected children across the state also hit a low point, dropping 20% since 2019 to 1,635.

[…Jane Day, a Des Moines mother, says she needs more help for her daughter.]

“She’s going to kill herself or be killed. That’s my constant fear,” Day said. “It’s been exhausting. Mentally and physically exhausting. I function at work, but our home life is completely chaotic. The worrying ― and just trying to make sure she gets what she needs ― is constant.”

Her daughter, who asked not to be identified because of her mental health struggles, said she experienced a constant lack of available programs while growing up, a situation made worse by the way people judge young people with depression, anxiousness, a desire to isolate and other challenges.

"It feels like people just want to push us away," she said. "It feels like they don’t understand what we go through. When we try to get the help we need, we can’t get the help we need. It’s more like people don’t care."

• From ABC 7 (New York): “Mom saves fussy baby's life after taking child to 3rd hospital despite 2 others insisting all was OK

The mother of a 5-month-old girl knew something was wrong with her baby despite what some doctors were telling her.

Faustina Cavero said she could see the glow was gone from her baby girl's face.

"I'm like 'Oh my god.' I know something is wrong with my baby, her eyes are rolling back,'" Cavero said.

Out of nowhere, Faustina says her 5-month-old daughter Aaliyah's face turned pale serious and then she began to spasm.

"She was just crying and fussy, and I'm like 'Mom she's making these moves, but I don't know what's wrong with her,'" Cavero said.

The mother of four had never seen something like this, so she took her to a hospital where she says she was quickly dismissed.

"They had told me I was under stress because I didn't get no sleep," Cavero said.

So she got a second opinion.

"I told them I took her to this hospital and they told me I was under stress," Cavero said.

Discouraged and scared, Faustina took Aaliyah home, but the spasms didn't stop.

Faustina trusted her gut and decided to seek a third opinion at Mount Sinai on Manhattan's Upper East Side.

"when I went in there, showed her the video, and that's when she said she's getting admitted," Cavero said.

Aaliyah was admitted on that day, and a team of doctors quickly got to work.

[…]Aaliyah was treated for infantile spasms and continues to receive care and monitoring at Mount Sinai.

Fast forward about a year and a half later and Aaliyah is thriving and will soon celebrate her second birthday.

A grateful Faustina hopes her story serves as a message and a warning for every parent.


Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

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