Shows
Medical MotherhoodLegal battle at NOLA Catholic schools; Va. paid family program needs improvement; Gender pay gap linked to care needsEach week, we showcase a picture of real life from the Medical Motherhood community. Submit one! If you’d like to participate, simply reply to this email. The intent is to show YOUR experience as a medical parent, not your child. What do you want people to know about the #medicalmom life? Subscribers, it’s time to say goodbye to the podcast version of Medical Motherhood. I’ve recorded nearly 100 episodes and learned a great deal about audio production! I would like to focus more time on producing short videos — like TikToks and Reels —...2023-10-2212 min
Medical MotherhoodWhy a Good Scare Can Be TherapeuticAs the days get darker and the Halloween decorations come out, I wanted to republish this piece from last year. I still think about my conversation with haunted house creator and medical mama Chrissa Paradis and how cathartic a good scream and a giggle can be. Here’s an excerpt. Follow the link below for the real deal:[…] 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 r...2023-10-1511 min
Medical MotherhoodWho is allowed to save the world?The care economy is a reality that businesses across the spectrum need to reckon with, particularly as the job market continues to improve. Flexible work options and outcomes-based metrics are key to allowing family caregivers a place in the workforce. 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. Medical Motherhood’s news round upSnippets of news and opinion from outlets around the world. Click the links for the full story.• From...2023-10-0812 min
Medical MotherhoodWhy schools need to figure out Medicaid billingThis week, I gave testimony to an Oregon legislative committee on the importance of figuring out Medicaid billing in schools. That was the subject of the investigation I co-reported with Emily Harris for NPR:Schools could be getting millions more from Medicaid. Why aren't they?You can watch and read all of the testimony on the House Interim Committee on Education’s website. Here’s a link to the video that starts when the topic does. My portion starts at minute 40:00 but please listen to all of the invited testimony on the topic. 2023-10-0112 min
Medical MotherhoodOkla. to study corporal punishment; Ala. sued over foster kids' education; N.C. punishes Black disabled students more; France adds to parental leave benefitsEach week, we showcase a picture of real life from the Medical Motherhood community. If you’d like to participate, simply reply to this email. What are you seeing this week? Medical Motherhood’s news round upSnippets of news and opinion from outlets around the world. Click the links for the full story.• From The Oklahoman: “Oklahoma lawmakers to study corporal punishment for disabled students”The two state lawmakers who tried unsuccessfully this year to ban the use of corporal punishment for public school students with disabilities will hold a joint...2023-09-2410 min
Medical MotherhoodTexas parents face pay cuts; foster kids' Social Security scandal; $199M boost for disabled students' career pathsEach week, we showcase a picture of real life from the Medical Motherhood community. If you’d like to participate, simply reply to this email. What do you want people to know about the #medicalmom life? Medical Motherhood’s news round upSnippets of news and opinion from outlets around the world. Click the links for the full story.• From The Texas Tribune: “Texas parents who care for their disabled children full time will lose money after pay raise”Inside an Austin high-rise north of the Texas Capitol in August, tearful parents li...2023-09-1711 min
Medical MotherhoodBack to school means something different for medical mamasThree 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 f...2023-09-1012 min
Medical MotherhoodMedicaid coverage crisis; the school bus blues; and LEGO's Braille breakthroughEach week, we showcase a picture of real life from the Medical Motherhood community. Please send in your pictures! What do you want people to know about the #medicalmom life? Thank you for all the kudos on the NPR story last week and welcome to those of you who are new subscribers! Your readership is appreciated. Those of you who are local to the Portland area — or who want to check out the feed online — should tune in to OPB Radio this Tuesday at noon. Sometime during that hour, I’ll be spe...2023-09-0314 min
Medical MotherhoodCould your school be getting more health care dollars from Medicaid?I had a long commute in high school. Since she worked near my school, my mom would drive me the 30 or so minutes every morning, but I would have to take a 2-hour bus ride home. We could never agree on the music. She wanted to listen to Oldies or Classic Rock, but I wanted to listen to Alternative or Pop. There was one thing we finally agreed on: National Public Radio.I had known I wanted to be a writer since the age of 6. But after a couple of years...2023-08-2723 min
Medical MotherhoodArizona's paid parent fight; Mom of isolated kindergartener sues; Inclusive sex ed neededEach week, we showcase a picture of real life from the Medical Motherhood community. If you’d like to participate, simply reply to this email. The intent is to show YOUR experience as a medical parent, not your child. What do you want people to know about the #medicalmom life? Psst. I’m very excited for Morning Edition this Thursday on NPR, as well as their Up First podcast. I can’t reveal too much yet, but there will be links in the next edition of Medical Motherhood! Be sure to tune in if you want to hear t...2023-08-2011 min
Medical MotherhoodThe State of Special Education in PortlandWhew, it has been a long dry spell since you’ve been able to see my freelance work, dear readers. That doesn’t mean I haven’t been working on stories for months, but somehow everything is coming out in August!PDX Parent has published the first part of a two-part series on the State of Special Education in Portland. Right now you can read the whole piece on pages 14-17 of the digital version of their print edition. A link to the web story is coming soon. EDIT (8/19/23): Here it is! ht...2023-08-0614 min
Medical MotherhoodFlorida Court Battle Continues; Ed Department Pushes States on IDEA; Medicaid 'Unwinding' Leaves Kids, Families StrugglingEach week, we showcase a picture of real life from the Medical Motherhood community. If you’d like to participate, simply reply to this email with your photo. What do you want people to know about the #medicalmom life? Medical Motherhood’s news round upSnippets of news and opinion from outlets around the world. Click the links for the full story.• From the Miami Herald: “In blistering order, judge tells Florida to stop blocking effort to aid medically frail kids”The battle of wills between Florida health administrators and a fede...2023-07-3012 min
Medical MotherhoodLandmark ruling may reshape home care nationally; CDC says I/DD is on the rise in kids; and one mom's argument for home-based careMedical Motherhood is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.Each week, we showcase a picture of real life from the Medical Motherhood community. If you’d like to participate, simply reply to this email. The intent is to show YOUR experience as a medical parent. What do you want people to know about the #medicalmom life? I’m running low on submissions, so if you send a picture it just might get featured! Remember: no kids’ faces. Focus...2023-07-2313 min
Medical MotherhoodPediatricians to tackle systemic issues; summer camp options lacking; AP covers family caregiver optionEach week, we showcase a picture of real life from the Medical Motherhood community. If you’d like to participate, simply reply to this email and attach your pictures. The intent is to show YOUR experience as a medical parent, not your child. What do you want people to know about the #medicalmom (or #medicaldad!) life? Medical Motherhood’s news round upSnippets of news and opinion from outlets around the world. Click the links for the full story.• From AP News: “Families worry over the future of Medicaid caregiver payments that were expanded...2023-07-1609 min
Medical MotherhoodThe inner and outer strength of being a medical mamaBeing strong has its advantages! The other day, I was waiting for a long time in the loading dock of a feed store and finally got bored enough to simply load my own 60-pound bale of hay. When you have a 70-pound kid to lift almost everyday, it ain’t no thang. But safe lifting is key! I know I’m just one sudden movement away from a bad back…. What do you do to stay strong? On the second Sunday of every month, we feature Where is the Manual for This?!, an editorial cartoon about the medica...2023-07-0912 min
Medical MotherhoodThe debate over disability disclosure, Maine to pass parent-caregiver pay, and NJ kids may lose access to a major hospitalEach week, we showcase a picture of real life from the Medical Motherhood community. If you’d like to participate, simply reply to this email. The intent is to show YOUR experience as a medical parent, not your child. What do you want people to see about the #medicalmom life? Medical Motherhood’s news round upSnippets of news and opinion from outlets around the world. Click the links for the full story.• From The Washington Post: “Your child is neurodivergent. Should you tell everyone?“I never would’ve wanted to be...2023-06-1812 min
Medical MotherhoodPackaging, packaging everywhereOn 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. This one feels like an allegory for waste in the system. Have you experienced this bizarre packaging phenomenon? Comment below or write us back!Medical Motherhood’s news round upSnippets of news and opinion from outlets around the world. Click the links for the full story.• From Fox 12 News (Oregon): “Parents of disabled children rally in Salem for caregiver funding bill”On Thursday...2023-06-1110 min
Medical MotherhoodRetaliatory allegations, Medicaid purge, and struggling kinship carersEach week, we showcase a picture of real life from the Medical Motherhood community. If you’d like to participate, simply reply to this email. The intent is to show YOUR experience as a medical parent, not your child. What do you want people to know about the #medicalmom life? Medical Motherhood’s news round upSnippets of news and opinion from outlets around the world. Click the links for the full story.• From The 74: “They Stood Up to NYC Schools for Their Disabled Child. Then Child Protecti...2023-06-0412 min
Medical MotherhoodDebt ceiling negotiations risk Medicaid benefits, Iowa faces special education cuts, and a disabled man reaches Everest summitI’ve been enjoying seeing your pictures portraying your experiences with medical motherhood. Some are hard and heartbreaking, while others are funny or beautiful, but all of them show the fierce love and devotion you have for your kids. Send in your photos to Shasta@MedicalMotherhood.com. Medical Motherhood’s news round upSnippets of news and opinion from outlets around the world. Click the links for the full story.• From Disability Scoop: “Medicaid, Disability Programs Could Face Cuts In Debt Ceiling Negotiations”The future of Medicaid and other...2023-05-2809 min
Medical MotherhoodThe cost of caregiving, the fight for FAPE and NJ's bill to require evacuation plans in IEPsWelcome to the first edition of our new format (announced May 7)! This issue features The 19th’s reporting on the significant impact of caregiving costs on women’s lifetime earnings — a Department of Labor report that does not include care for adults with disabilities, but is interesting nonetheless. We also take a look at a piece from The New Yorker on parents’ ongoing struggle for a “free appropriate public education” for students with disabilities. Finally, NorthJersey.com has a piece on legislation to require a safety plan for students whose disabilities make it difficult to “run, hide or fight” during a mass sh...2023-05-2113 min
Medical MotherhoodHappy Mother's Day to all the SupermamasLack of sleep is definitely my Kryptonite! What’s yours? The second Sunday of every month Medical Motherhood publishes Where Is the Manual for This?!, an editorial cartoon by Lenore Eklund.Medical Motherhood’s news round upSnippets of news and opinion from outlets around the world. Click the links for the full story.• From the Miami Herald: “‘Just another baby for them.’ Parents, feds fight for kids stuck in Florida nursing homes” (If you decide to click through, be aware that the article contains numerous graph...2023-05-1414 min
Medical MotherhoodYear Three of Medical Motherhood begins...This week at the White House Correspondent’s Dinner, comedian Roy Wood, Jr., had an important message poking out of his hilarious set: Local sources of news are dying and, without them, we are missing community storytellers and watchdogs all over the country.As a former community journalist, I am painfully aware of this reality and of how deeply important local news sources are. When I started Medical Motherhood, I imagined it could be like a small newspaper for my community. Even if you and I aren’t connected by geography, we are connected by comm...2023-05-0713 min
Medical MotherhoodGrowing resilience — lessons from a medical mama's gardenEarly on, I would try to start seeds and, eventually, they died. I would put them in neat little rows, give them fertilizer and water them. I would do everything by the book, everything I am supposed to do. But for some reason, I was rarely successful. My corn never grew past my knee, my basil yellowed and wilted, my lettuce seedlings rotted. My son, on the other hand…. Jasper* finds old seed packets and sprinkles them in patches, not rows. He doesn’t pay attention to the weather. He forgets to wat...2023-04-3013 min
Medical MotherhoodPaid family caregivers should be a national policyOn Tuesday, President Joe Biden signed an executive order that he called “the most comprehensive set of actions any administration has taken to date” to increase access to childcare and to the home-care industry. Biden, speaking to a crowd of union members, politicians, disabled people and their families in a sunny Rose Garden ceremony, called the new effort “fundamental to who we are as a nation.”Biden’s action comes as a flurry of activity is happening on the national scene to promote the use of paid family caregivers. Many family caregivers across the country are dreading the May 11...2023-04-2315 min
Medical MotherhoodNews roundup: Pennsylvania schools to offer disability curriculum, Oregon schools outed for potential violations of IDEA, and moreHello readers,This week we have a bumper crop of news stories relevant to those raising disabled and neurodiverse children. So, we have an expanded news briefs section taking over this issue. As always, you can click the links to get to the original story. Here are the headlines you’ll find inside:* Report finds more than 130 emergency teachers serving as special education teachers in Oregon, potentially violating federal law* Pennsylvania introduces disability awareness curriculum to K12 schools, a first in the nation* Iowa passes bill to ti...2023-04-1613 min
Medical MotherhoodCaregiver's Break Time Blitz: The eternal struggle between productivity and restWhen Lenore Eklund, our fabulous Medical Motherhood editorial cartoonist, sent over this month’s edition of Where is the Manual for This?! I literally laughed out loud. I feel this HARD. My to do list is as long as my arm and somehow even when I get a surprise break I still don’t know what to do with myself. The tension between “rest” and “productivity” is particularly strong. Productivity usually wins but rest would sure be nice…What do you do when you get a surprise break? What do you want to do? Let us kno...2023-04-0910 min
Medical MotherhoodA year ago, Oregon's parents rallied for change. Now they go back to the capitol to pass a paid parent caregiver billToday’s Medical Motherhood is a rerun of coverage of a protest one year ago that was asking for parents to be paid as caregivers. Many things have changed in the last year, and much has remained the same: I still think this is a good idea and I have worked alongside a group of passionate parents for many hours every week to try to make it happen. I have also made and lost friends over differences of opinion about what a politically viable strategy is for a policy for Oregon. The parent group I am a part of th...2023-04-0219 min
Medical MotherhoodHome help for your disabled child!*Medicaid’s Home and Community Based Services are a wonderful thing in theory. But these supports — which in many states includes in-home caregivers — can be difficult to make work in practice, especially for children. Part of the issue, as illustrated this week by Lenore Eklund in her Where is the Manual for This?! editorial cartoon for this month, is the web of restrictions and limits on what exactly these hours can be used for. Some of them make sense, but most do not, especially in the context of a family and a child’s development. The above restrict...2023-03-2611 min
Medical MotherhoodGo camping! Accessible options in OregonI love camping. So I knew that even with our family’s extra challenges, I had to figure out some sort of way to keep going for summer adventures in the great outdoors. Through a lot of trial and error, I can say with confidence that camping with wheels is not only possible but worth the effort.Fortunately, camping — and travel generally — is being made easier by a new wave of accessibility in the tourism world. There are accessible tourism conferences, like The Accessible & Inclusive Tourism Conference, accessible tourism organizations like TravelAbility, accessible tourism blogs like W...2023-03-1916 min
Medical MotherhoodThree moms on why they should be able to be paid caregivers for their childrenEach year on International Women’s Day, a Portland, Ore., radio station “holds the mic up to those systematically excluded from radio, 365 days a year.” From 7 a.m. to 7 p.m., all other programming is suspended to put marginalized people’s struggles into sharper focus. As part of this Amplify Women event, XRAY FM aired a conversation I recorded with three women at 11 a.m. last Wednesday, March 8. (See it on their site at Medical Motherhood: Full-Time Paid Caregiving for Parents of Disabled Children.)In the podcast version of this week’s Medical Motherhood, you can listen...2023-03-1259 min
Medical MotherhoodNorth Dakota could pass paid parent caregiver legislation by the end of AprilToby Lunstad was an occupational therapist and manager when she realized her daughter Addilynn’s needs were significant enough that she needed to give up employment. Toby had run out of paid leave and was having to constantly correct her daughter’s hired caregivers, so she didn’t feel safe leaving Addilynn with them to go back to work.That was three years ago and Addilynn has blossomed under the focused care of her mother.“She is doing way better,” Toby tells Medical Motherhood, “even friends that we don’t see a lot have noticed a...2023-03-0516 min
Medical MotherhoodJulie Beckett’s legacy is honoring the role parents play in raising disabled childrenMedicaid would have paid for Katie Beckett to live her entire life in a hospital.Her mom, Julie Beckett, had other ideas.Not only would that have been a waste of government resources, but a poor excuse for a childhood. So Julie Beckett collected arguments and data and took her advocacy all the way to President Ronald Reagan. Within two days of the President speaking about this, administrators made an exception for Katie. Soon after, there was an option for states to create what became known as “Katie Beckett wa...2023-02-2620 min
Love Doesn't Pay The BillsPaid Parent Caregivers: With Guest Shasta Kearns MooreGuest Shasta Kearns Moore makes a return to discuss two bills recently addressed in the Oregon State Senate. These bills represent parents advocating to be eligible to work paid positions as caregivers to their children with disabilities.https://www.medicalmotherhood.com/https://olis.oregonlegislature.gov/liz/mediaplayer?clientID=4879615486&eventID=2023021052transcript:https://docs.google.com/document/d/1wn_NjRINMxJ3Vf9n5uO3qmRmho2sd-kx/edit?usp=sharing&ouid=116946706116646252571&rtpof=true&sd=true*Please note: transcriptions are automatically generated, and may have inaccuracies.Become a supporter of this podcast...2023-02-2150 min
Medical Motherhood'We did it. It worked.' Watch the senate hearing on paid parent caregiver bills in OregonMedical mothers wear many different hats. We are therapists and nurses and referees and dieticians and housekeepers and laundresses.One of the many hats I wear is journalist. Another, lately, has been political activist.Last Monday, Feb. 6, I wore that latter hat to a hearing of the Oregon Senate Committee on Human Services. The committee was hearing testimony two bills that could lead to paid parent caregivers in our state. The first, Senate Bill 646, is a broad measure, developed by Sen. Tim Knopp of Bend in partnership with parent leaders. The second, Senate...2023-02-1917 min
Medical MotherhoodIntroducing a supermama superhero: Clarissa Kent, Disability DefenderIntroducing: Clarissa Kent! Editorial cartoonist Lenore Eklund and I were laughing a while back about a reverse superhero: One who dresses in street clothes to do heroic life-saving activities by day but then on rare occasions, dresses up in a leotard to do… well, absolutely nothing by herself in bed with takeout! That’s how this medical motherhood life feels sometimes. I love what Lenore has done with the concept and look forward to more in the supermama Disability Defender series. To truth, justice and the medical motherhood way!2023-02-1210 min
Medical MotherhoodOregon to ban expulsions from preschool but what about kids who never get in?This month’s edition of PDX Parent has my feature on Oregon’s radical new program to eliminate suspensions and expulsions from preschools and day cares by 2026. The Suspension and Expulsion Prevention Program in the soon-to-be-created Oregon Department of Early Learning and Care is gearing up to provide the training, research, supports and funding that early educators will need to stop the practice. Before the ban on suspensions and expulsions goes into effect, the state plans to conduct three years of training and support to the state’s early childhood care provid...2023-02-0513 min
Medical MotherhoodThere are other people walking in the rain“So.That’s all.Thanks for asking and for the love. It’s just so hard. All the time. Forever.”That’s how I ended a text exchange with a friend this week, another medical mama. I was explaining another hard week in what has been a series of hard weeks lately.Of course, I meant it as hyperbole, but that is kinda how it feels sometimes caregiving for a child with lifelong complex disabilities. So hard. All the time. Forever….*It’s only as...2023-01-2912 min
Medical MotherhoodDisabled children are more likely to be victims of sexual abuse. What’s a parent to do?A man was sentenced last week to life in prison for sexual exploitation of four children, three of whom were significantly disabled. As a certified nursing assistant caring for them overnight in a Central California group home, Steve Rodriguez, 38, filmed himself sexually abusing the children and committed several other crimes, according to a U.S. Justice Department press release.While the details of the case are incredibly distressing — such as that he started the acts when one victim was just 6, and that the abuse went on from January 2016 to May 2020 — what may be most horrific is how rare...2023-01-2217 min
Medical MotherhoodHow to use ChatGPT to simplify the stuff you need to do for your disabled childLife is just too darn complex. I say this a lot, but it’s true. Especially for those of us raising disabled children, the web of rules, restrictions and justifications we have to crawl through can often be downright suffocating. Wouldn’t it be great if you could just have a robot do all that for you? Well, an all-powerful solution may still be a ways off but ChatGPT may be the next best thing. For those who haven’t heard about the artificial intelligence (AI) program taking the world...2023-01-1519 min
Medical MotherhoodWho can help?The second Sunday of every month Medical Motherhood publishes Where Is the Manual for This?!, an editorial cartoon by Lenore Eklund.There just is no substitute for: “Been there. Done that.” Yes, medical professionals and social workers have their areas of expertise and can unlock access to specialized supports. But some days you just need someone who has actually gone through it themselves, rather than read a book about it, you know? I have learned so much from my community of medical moms (and dads!) and know that my children are far better off...2023-01-0810 min
Medical MotherhoodSelf-care: How to and why“The problem with people like you is getting you to take care of yourself.”That was my physical therapist. He meant it in a good-natured way. But the statement echoed through my brain as I drove home.Though I had been to probably hundreds of physical therapy appointments in the last decade for my twins, this was the first one I had been to for myself. As my non-ambulatory son approaches 70 pounds, my back is no longer up to the challenge without professional help.As the primary caregiver to children with extr...2023-01-0118 min
Medical MotherhoodYes, Virginia, there is a Santa ClausIn September 1897, 8-year-old Virginia O’Hanlon wrote a letter to the editor of New York’s Sun newspaper. The quick response was printed as an unsigned editorial but was the work of veteran newsman Francis P. Church. Though the writing is now 125 years old, the sentiments somehow still inspire and ring true.It has been a tradition at several of the newspapers I worked at to reprint it each Christmas and since this week’s column falls on Christmas Day, I thought it would be appropriate to do so here. Known as “Yes, Virginia, there is a San...2022-12-2512 min
Medical MotherhoodBiden administration's nearly $1 billion plan for infant/toddler support needs empowered moms to workIn thinking about this week’s column, my brain kept returning to the image of a light in the darkness.Now is the time of year that we in the Northern Hemisphere see the sun the least. Everything is cold and still and dark. But in such darkness, even the smallest light is clearly visible.The darkest time in my life was when my children were small. I had wonderful, supportive family, but the double whammy of multiple diagnoses and fragile newborn twins — combined with the sudden loss of my career due to thei...2022-12-1815 min
Medical MotherhoodA medical mama's Christmas wishThe second Sunday of every month Medical Motherhood publishes Where Is the Manual for This?!, an editorial cartoon by Lenore Eklund.Is it really too much to ask that all these systems set up to help disabled children do what they say they are going to do? We don’t need more toys, we need real change! What is it that you are hoping for this holiday season for the little ones in your life who experience disability? Let us know in the comments or on social media. ...2022-12-1111 minLove Doesn't Pay The BillsCan We Make This Something That We Can Actually Use?: With Guest Shasta Kearns MooreShasta Kearns Moore shares her experiences as the mother of twins who experience disability, as well as a bit about the advocacy for parents of children with disabilities to remain eligible for paid caregiver positions https://www.medicalmotherhood.com/transcript:https://docs.google.com/document/d/1pTQeoF2CUtTdeujFBYEOAE8ipB7A42uo/edit?usp=sharing&ouid=116946706116646252571&rtpof=true&sd=true*Please note transcriptions are automatically generated and likely to contain errors.Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills--5692861/support.2022-12-0641 min
Medical MotherhoodOn the cusp of disabled child's adulthood, a mother wonders how caregiver income could have changed their livesThis week we have an installment in our occasional series: In Her Words, which provides a window into the lives of medical mamas from all different backgrounds. In Her Words is produced through an edited and condensed interview with the mother so that we can hear her full story in her own words, rather than just soundbites.This week’s narrative comes from Lisa Tschudi, who just launched a new podcast called Love Doesn’t Pay the Bills. (Because, as she says, no matter how much we love our children, love isn’t enough to be warm, dry, s...2022-12-0426 min
Medical MotherhoodThe gifts of raising disabled childrenThanksgiving is a holiday of food and gratitude. This is a time of year that I count my blessings, reminding myself that even when all is dark, a light still shines.Gratitude researcher Robert Emmons says that gratitude is a way of seeing the big picture and not getting overwhelmed by the day-to-day struggles. For most of us, it takes conscious effort to be grateful. Gratitude is hard. And gratitude does not excuse injustice. And gratitude is not weak.“In fact, gratitude can be very difficult because it requires that you recognize your de...2022-11-2716 min
Medical MotherhoodA mother's raw reaction to medical motherhood showcased in new documentaryNote: An earlier version of this post only sent to paid subscribers on accident. Apologies to free subscribers! The Sunday post is still free but if you would like to upgrade, please see the holiday sale link below. Holding Moses, a new short documentary from The New Yorker, is beautifully shot — and hard to watch.The film is a frank look at medical motherhood through the experience of Randi Rader, a queer single mother who bravely exposes to public view the swirl of intense emotions that come from giving birth to and raising a...2022-11-2014 min
Medical MotherhoodA mother's raw reaction to medical motherhood showcased in new documentaryHolding Moses, a new short documentary from The New Yorker, is beautifully shot — and hard to watch.The film is a frank look at medical motherhood through the experience of Randi Rader, a queer single mother who bravely exposes to public view the swirl of intense emotions that come from giving birth to and raising a child with significant disabilities.Though it is only 17 minutes long, I had a number of reactions to the film. Mostly: gratitude that it had been made and fear about how Rader’s story would be received.As...2022-11-2014 min
Medical MotherhoodWhen simple fixes aren't so simpleThe second Sunday of every month Medical Motherhood publishes Where Is the Manual for This?!, an editorial cartoon by Lenore Eklund.It’s pretty amazing how creative people can get when their medical equipment needs fixing NOW but our systems aren’t set up to move quickly. We currently have a range of fasteners, zip-ties and rubber bands holding various pieces of our son’s wheelchair together. And the battery that our wheelchair supplier said would take a week actually took six. Just another day in a dysfunctional health care system, but thank goodness there are cr...2022-11-1308 min
Medical MotherhoodFeds unveil a national strategy for family caregiver supportDo you smell that, dear reader? Change is in the air.And no, I don’t mean the changing of the seasons.For the first time ever, the federal government has collected together the constellation of programs it offers to family caregivers in an attempt to actually coordinate its approach to the needs of this group.The National Strategy to Support Family Caregivers, released Sept. 21, has 345 actions across 15 federal agencies to “support family caregivers’ health, well-being and financial security.”This comes on the heels of the Maternal and Child Health B...2022-11-0618 min
Medical MotherhoodFear can be healing: Why you might actually want to be terrifiedMy 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 enco...2022-10-3013 min
Medical MotherhoodCan you really pay someone to care?Each week, as I comb through the news to find stories to share in Medical Motherhood’s news briefs, I see a disconnect in the narratives.Invariably there are these two types of stories: The first type is about people — often perfect strangers — showing love, compassion and support for disabled children and their families. Sometimes these can veer into inspiration porn — celebrating disabled people for just doing ordinary things — but for the most part, these are beautiful stories that make me tear up at just how incredibly cool humans can be to one another.The other type...2022-10-2315 min
Medical MotherhoodRead my story on accessible Portland travel“I’m famous!” my son exclaimed when I showed him pictures of himself on the Travel Portland website. My guys have always loved the limelight and they have always loved to travel. So it was an exciting day when Travel Portland published my compendium of accessibility accommodations at attractions in and around our metro area.Check it out here: https://www.travelportland.com/plan/accessible-portland/In addition to my real-life research buddies — whom you can see testing out attractions like the Oregon Zoo and the Oregon Museum of Science and Indu...2022-10-1613 min
Medical MotherhoodTFW you can't be late but your doctor canThe second Sunday of every month Medical Motherhood publishes Where Is the Manual for This?!, an editorial cartoon by Lenore Eklund.American health care at its finest. You would think if anyone understood the extraordinary amount of coordination it takes to get to an appointment with a medically complex or neurodivergent kiddo, it would be medical providers. But in fact it often seems as if the opposite is true. If only they could walk a week in our shoes….Medical Motherhood’s news round upSnippets of news and opinion from outl...2022-10-0909 min
Medical MotherhoodWorking motherhood is even harder when your child has a disabilityI’m racing down the freeway at 1:59 p.m. with my heart in my throat.The sheer number of balls I am trying to keep in the air takes my breath away.I have 11 minutes until I have to be home to greet my twins coming off their school bus. Because they ride the special education bus, I must be present when they get home.One problem: I am miles away from my house.This is a typical Tuesday in 2015 when I worked as a newspaper reporter. I have pr...2022-10-0218 min
Medical MotherhoodThat viral Portland intruder story has a deeper meaning no one is talking aboutThis is a story that has everything: Fear, intrigue, humor, mystery, outrage, courtroom drama, and — two of my favorite things — a debate over disability policy and a healthy dose of media criticism. This is the story of how my friend Kelsey Smith became a viral story overnight thanks to some odd circumstances she caught on video. She was on all of our local news channels, and as far away as Milwaukee, Wisconsin, the national news, and even in the United Kingdom. The headlines and repackaging of her story bordered on the absurd, with The Daily Mail...2022-09-2516 min
Medical MotherhoodEverything you need to know about ABLE accountsI have often said that having a disabled child feels like “falling through the looking glass” into a bizarro world where up is down and down is up.One of the many odds things that happen in Special Needs World is you get told not to save for your child’s future: not to set up any bank accounts in their name and not even to open a college savings account.Why?Because, in America, government benefits are often tied to being very, extremely poor… or at least appearing so on pa...2022-09-1818 min
Medical MotherhoodDIY hell: When adaptive equipment isn't worth the effortThe second Sunday of every month Medical Motherhood publishes Where Is the Manual for This?!, an editorial cartoon by Lenore Eklund.How many times has this happened to you?? Personally, I’ve gotten a little gun shy about adaptive equipment and now demand to try it out before we go through the effort!Medical Motherhood’s news round upSnippets of news and opinion from outlets around the world. Click the links for the full story.• From Psychology Today: “The Damage Caused by Infantilizing the Disabled”[Dr. Ken...2022-09-1110 min
Medical MotherhoodRead my story on the childcare crisis in Oregon Business magazineIt’s out! This summer, for Oregon Business magazine, I talked to child care and business experts around my home state about Oregon’s new $100 million investment in child care and how even more needs to be done on child care for a healthy economy. The story is focused on Oregon’s particular problems and solutions, but the issues are nearly universal in this country. The care economy has a significant impact on the traditional economy for a very simple reason: Time is finite. When people need to care for other people, that time can’t be spe...2022-09-0410 min
Medical MotherhoodThe kids are not OK: What you can do during the youth mental health crisis“Families have no choice, often, but to call the cops on their own kids” — Abigail Kramer, reporter for The CityTW: This issue refers to youth suicide. Call 9-8-8 for immediate assistance in a crisis. When journalist Abigail Kramer first started talking to families and mental health professionals in New York, it took a long time to figure out what the story was. The youth mental health crisis was clear — but complex and overwhelming. Kramer said she found “a near-universal sense of outrage” from her sources and quickly determined that everyone was...2022-08-2816 min
Medical MotherhoodGet your special education student ready for school with this free template“In special education, there's too much emphasis placed on the deficit and not enough on the strength.” — Temple Grandin [1]Back to school is usually an exciting time of year. This year, it’s hard to ignore the headlines: * teachers leaving in droves; * districts slashing instruction days; * special education students relegated to the “virtual basement.”There seems to be an increasingly vocal assessment that public school is struggling to fulfill its basic promises. Michael B. Horn, author of the book From Reopen to Reinvent...2022-08-2113 min
Medical MotherhoodNational 'Blueprint' aims to combat systemic problems for disabled childrenA years-long effort to identify just how messed up our health care system is for kids with extra health care needs — and what to do about it — culminated this summer.Called the Blueprint for Change: A National Framework for a System of Services for Children and Youth with Special Health Care Needs, the multi-part series was published in June in Pediatrics, the journal for the American Academy of Pediatrics. The Biden Administration’s Maternal and Child Health Bureau spearheaded the effort to categorize and address the challenges faced by the kids they call “Children and Youth wit...2022-08-1416 min
Medical MotherhoodAre you a mama bear or a scared cricket?The second Sunday of every month Medical Motherhood publishes Where Is the Manual for This?!, an editorial cartoon by Lenore Eklund. This month I needed to move it up to the first Sunday because: life!Personally, I think I’m a cat. Fierce, independent but also more than willing to run and hide! What animal do you feel most represents you*? Let us know in the comments. Medical Motherhood’s news round upSnippets of news and opinion from outlets around the world. Click the links for the full stor...2022-08-0708 min
Medical MotherhoodWhat can you do to keep your pregnancy safe during a heat wave?“Some like it hot, some like it cold, Some like it in the pot, nine days old.” — nursery rhymeAcross the world this summer, record-setting temperatures could mean poor outcomes for pregnant women and their babies.As climate change continues, longer, hotter and more frequent heat waves could lead to a rise in Neonatal Intensive Care Unit stays and possibly even lifelong health conditions.A study in the International Journal of Environmental Research and Public Health said as much in 2017: “We are likely to see an increase in preterm birth, a decrease...2022-07-3112 min
Medical MotherhoodWhy I don't use the term 'special needs' anymore“As an influential artist I’m dedicated to being part of the change I’ve been waiting to see in the world.” — LizzoLanguage evolves and the disabled community is not a monolith. There are different and changing opinions on what are — and are not — appropriate ways to refer to the experience of being physically or mentally different than nondisabled people.In the recent New York Times essay “‘Is that Ableist?’ Good question.” blind writer and performer M. Leona Godin wrote about her experience as a Gen Xer speaking to two younger activist friends. Her exclamati...2022-07-2413 min
Medical MotherhoodThe best books to help celebrate Disability Pride Month“‘I’ll take all night if I have to,’ she vows. And she keeps heaving… hauling… dragging herself up those steps.” — All the Way to the Top (2020)July is Disability Pride Month! The celebration is a tradition that started in New York City with a parade to mark the July 26, 1990 signing of the Americans with Disabilities Act. That means just over 30 years ago discriminating against someone because they had a disability was often completely legal. It’s not easy to change a law, but social and cultural change can come even slower. I...2022-07-1712 min
Medical MotherhoodThe 'special needs' cost multiplier“We must dissent from the indifference. We must dissent from the apathy. We must dissent from the fear, the hatred and the mistrust. We must dissent from a nation that has buried its head in the sand, waiting in vain for the needs of its poor, its elderly, and its sick to disappear and just blow away.” — Justice Thurgood MarshallThe second Sunday of every month Medical Motherhood publishes Where Is the Manual for This?!, an editorial cartoon by Lenore Eklund.Medicalized equipment always costs five times more than I think it will! Can you relate...2022-07-1011 min
Medical MotherhoodThat feeling when national experts agree that the system for disabled children is broken and needs fixing“It is well-known that the system of services and supports was not meeting the needs of children with disabilities generally and the situation was even worse for children who are multiply marginalized. The COVID pandemic has exacerbated these problems. But that means that we have opportunities to do better.” — Dr. Amy Houtrow, pediatrician and health researcherAnother of my speaking engagements was published this week, right on the heels of last week’s Oregon Public Broadcasting panel discussion. I was so honored to be asked to speak at the National Academy of Sciences, Engineer...2022-07-0312 min
Medical MotherhoodOur caregiver conversation on Oregon Public Broadcasting shows the need for true supports“It’s hard because you want to give advice to people on an individual level but it’s a systematic issue.”— Sabine Wilson, caregiverMedical Motherhood subscribers! These conversations are breaking into the mainstream. This week, Oregon Public Broadcasting’s Think Out Loud aired an episode all about in-home caregiving. You may recognize the first guest… it was me!The episode was actually recorded a few weeks ago in front of a live Zoom audience, which made for a great conversation with the audience, most of which occurred in the chat, so it was interesting for me to list...2022-06-2615 min
Medical MotherhoodMedical Fatherhood: What are the unique challenges for dads of disabled kids?“His heart is too full, and no words to release it.” ― Gabrielle Zevin, The Storied Life of A.J. FikryI try to bring you quality news sources and research, dear reader, but this week I’m stumped. I looked for information specific to fathers of disabled children and found almost nothing.There are several unique challenges for fathers in my community: increased isolation; difficulty discussing caregiver tasks; the paltry amount of resources geared towards stay-at-home dads; a sense of feeling “trapped” in a job due to the enormous pressure to provide economic stability to a family wit...2022-06-1914 min
Medical MotherhoodDire consequences of ongoing formula shortage could have been avoided, parents say“Hunger is not a problem. It is an obscenity. How wonderful it is that nobody need wait a single moment before starting to improve the world.” — Anne FrankIt is extraordinary how basic some of the fights can be in Special Needs World. (That’s what I call the web of bureaucracy that ensnares parents of disabled childrren.)Food. The fact that your child needs food, that should be a settled question, right? There should be systems and services in place to make sure children don’t starve?In Special Needs World, mul...2022-06-1213 min
Medical MotherhoodWhat you need to know about Social Security's benefits for disabled childrenHello to my many new recent subscribers! Medical Motherhood has grown a lot in the last few months, including the addition of a podcast version, so this week, I’ve decided to rerun a popular issue explaining the process and issues in Social Security for disabled kids. The idea for Social Security started in 1933 as a letter to the editor from a California doctor. Dr. Francis Townsend came up with the plan for a guaranteed retirement income after watching three elderly women pick through trash for food.It snowballed rapidly. The core i...2022-06-0523 min
Medical MotherhoodJulie Beckett’s legacy is honoring the role parents play in raising disabled children“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” — Margaret MeadMedicaid would have paid for Katie Beckett to live her entire life in a hospital.Her mom, Julie Beckett, had other ideas.Not only would that have been a waste of government resources, but a poor excuse for a childhood. So Julie Beckett collected arguments and data and took her advocacy all the way to President Ronald Regan. Within two days of the President speaking about this, administrators made a...2022-05-2917 min
Medical MotherhoodBeyond the ‘Unseen’ documentary: Parent-caregivers need societal solutions“You have to keep moving forward because your child needs you. It’s a lonely path. And often it is you, the caregiver, paving this path all by yourself for your child.”” — Jesse Ronne, UnseenThroughout the parent-caregiving world this week, people are tuning into the online premier of Unseen: How We’re Failing Parent-Caregivers and Why It Matters.If you haven’t read our piece on the documentary filmmaker’s process in that film, check out the May 1 issue. In Medical Motherhood’s May 21 discussion about the film, readers and podcas...2022-05-2213 min
Medical MotherhoodSingle mom escapes 'victim mentality' through paid parent-caregiving but will it last?“They don’t care that you have a disabled child and you have to stay home all day. They don’t care. If you don’t have an income, you don’t matter.” — Cyndy Campobasso-LeDouxToday’s issue is part of our occasional series called In Her Words. I interview mothers of disabled children and lightly edit their word-for-word answers into an essay. Go back to read previous episodes, Lorri, Jennifer, and Shannon. Cyndy and I know each other from an award-winning story I did on her daughter’s controversial growth attenuation. She r...2022-05-1522 min
Medical MotherhoodSpeaking our truths: ONE year of Medical Motherhood!“The hand that rocks the cradle is the hand that rules the world." — William WallaceSpeak your truth.This newsletter started with just that thought. I had been molded and reshaped by more than a decade of interactions with medical professionals, government agencies, schools, nonprofits, disability justice advocates and the general public. I had had to learn acronyms and pharmaceutical names and organizational charts. I had been made to feel unworthy, incapable, crazy and stupid.But every time I spoke my truth and every time I listened to others in s...2022-05-0813 min
Medical Motherhood'Unseen' documentarian was shocked at the reality for parents raising disabled children“I went in with the assumption that there’s resources that are available. Now, that sounds crazy.” — Amanda Dyer, Unseen producer and co-directorIt was kismet that brought filmmaker Amanda Dyer to produce the 46-minute documentary Unseen: How We’re Failing Parent Caregivers and Why It Matters.Though married to co-director Tom Dyer, she does not have children and didn’t know anything about family caregiving. Dyer was simply looking for a new subject for a documentary. Soon after, she saw this Facebook comment:“…this is why I so adamantly pursue...2022-05-0113 min
Medical MotherhoodMother fears being forced to choose between her daughter and homelessness“If they pay me, I could stay with my child, I could provide the things she needs, get off social services and food stamps and feel like I don’t have to rely on the state. I could be self-sufficient. Under this new program, I felt like I could get there, and now I don’t.” — Carly AnastasionThis is the fourth installment of our occasional series profiling mothers raising disabled children. The narrative was crafted from an interview with the mother and told in her words. You can read the previous installments here, here and here. I gre...2022-04-2424 min
Medical MotherhoodSurvey says: Paid parent-caregivers mean healthier, happier disabled children“If we were allowed to be her caregivers, our quality of life (and most importantly HER QUALITY of life) would drastically increase. ” — anonymous survey respondent I’ll say one thing about COVID-19 — the threat of illness or death changed a lot of people’s seemingly unalterable beliefs overnight.Companies that had refused to give flexible work options suddenly found ways for their employees to work out of the office at all hours. Governments that were tied to slow, plodding processes and monolithic policies suddenly found loopholes and exceptions. Families that couldn’t imagine any...2022-04-1719 min
Medical MotherhoodIn Her Words: Shannon BradburyPsst. Are you a paid subscriber yet? Medical Motherhood’s one-year anniversary garden party is coming up. The event-of-the-season (OK, yes, I’ve been watching Bridgerton) is for paid subscribers only!This is the third installment of Medical Motherhood’s occasional series called In Her Words. For these long-form narratives, I interview mothers of children with disabilities to get a deep sense of their experience and the barriers they’ve encountered. There was Lorri, who came to the tough decision that her disabled son needed to live in a facility outside the home. And Jennifer, who told us what...2022-04-1027 min
Medical MotherhoodHow to smile again: Grief and motherhood“Grief is not limited to sorrow. …Grief is truly that natural and normal reaction to loss that can have conflicting emotions.” — Katie GreerWe dive into hard topics here and this week is no different. Fortunately, my friend Katie Greer, a grief recovery specialist with The Satellight Project, has the knowledge and the attitude to make sense of death and other loss. Katie and I met through my sons’ co-op preschool. I was the outgoing board president and she was incoming, so we spent some time together bonding over paperwork and filing sys...2022-04-0344 min
Medical MotherhoodOregon families of disabled kids rally to demand parent pay“I like it. Good job.” — Oscar Triplett, 9, about the March 24 rallyAs I drove back from the Family Caregivers Car Caravan at the Capitol in Salem last Thursday, I was struck by the depth of feeling from so many of the people I spoke with there. The love between parents and young children is a world-changing force.Watch a video of the arrival of the caravan at the Human Services building: https://www.facebook.com/shastakm/videos/501086394888524 In the depths of despair, what do any of us say? “I want my mommy,”...2022-03-2718 min
Medical MotherhoodThe case for paying parents of disabled children“When Oregon finally allowed parents to be paid as caregivers it was too late for us.” — Celia Vander VeldenI’ve spent most of the last year in this newsletter defining a problem: raising disabled children is difficult in ways few on the outside understand — and accessing supports from our government is usually a big part of the problem.In compiling the news briefs at the end of each issue, I’ve also seen how the lack of true and fair support is a widespread problem across the United States, and throughout the world. This week...2022-03-2014 min
Medical Motherhood'For Some Oregon Children—Including Mine—Public Schools Haven’t Reopened' hits Willamette Week“What we’re looking at is a complete rollback to the idea that children are entitled to a free and appropriate public education.” — Sen. Sara Gelser Blouin (D-Corvallis)COVID-19 changed so many policies, but I would argue schoolchildren have experienced some of the biggest policy impacts. Children in special education even more so. A few weeks ago, I wrote an allegory for how it felt trying to regain access to brick-and-mortar school for my twins with disabilities. Since then, we have found a new school home with an online public charter and the...2022-03-1320 min
Medical Motherhood'Normal' sucked for people like us. Let's not go back, let's go forward“As the rest of the U.S. comes to terms with the same restless impermanence, it must abandon the question When do we go back to normal? That outlook ignores the immense disparities in what different Americans experience as normal. It wastes the rare opportunity to reimagine what a fairer and less vulnerable society might look like.” — Ed Young, staff writer for The AtlanticAs the nation seems poised — yet again — on the edge of easing most COVID-19 restrictions, I’d like to pause and ask everyone not to forget what they’ve learned over the last two years. ...2022-03-0613 min
Medical MotherhoodOregon’s disabled children are about to lose their best-qualified caregivers“It’s been a very frustrating process to uproot everything,” — Jessica Franklin, mom of twoThree years ago, I embarked on research for a book about what it was like to interact with the morass of government services as the parent of a child with complex disabilities. The book was a victim to pandemic forces, but through my research I came to the conclusion that the our support systems are entirely too complex and must be simplified in order to fulfill the mission of helping these families thrive.I have many thoughts on how to s...2022-02-2715 min
Medical MotherhoodWhat is service?This week, I bring you an essay I wrote two years ago, in October 2019, before the world changed — though many of the conclusions I have are the same. True service to needy people would look a lot different than the systems we have now. I’m not gonna lie: My life is super awesome. I think it’s important to say as part of a newsletter that involves a fair amount of complaining — both for the sake of accuracy, and to acknowledge my own privilege as a middle-class white woman with apparentl...2022-02-2019 min
Medical MotherhoodDisabled children up to three times more likely to grow up around mental illness, other stressors, study says“I don’t think one parent can raise a child. I don’t think two parents can raise a child. You really need a whole village.” — Toni MorrisonHere’s something I never would have noticed if I weren’t the parent of a child in a wheelchair: The places where parking for disabled people is always full and the places where it never is.The hardest places I’ve found to use my son’s disabled parking permit?Walmarts in low-income areas.Funny? Right? Until you start to really think about...2022-02-1313 min
Medical MotherhoodPDX Parent: Parents of disabled children as 'changemakers'“There’s such pain and agony in parenting these kids with personal challenges. I had to make the struggle count for something. It had to matter.” — County Commissioner Sonya FischerI have wanted to do this story for a long time — ever since I met these three strong female politicians here in Oregon. State Senator Sara Gelser Blouin, County Commissioner Sonya Fischer and former Representative Julie Parrish all know what it’s like to raise children with extra needs and they used that experience to propel them towards policymaking. Thank you to PDX Paren...2022-02-0622 min
Medical Motherhood10 things parents wish every IEP team knew“The potential possibilities of any child are the most intriguing and stimulating in all creation.” — Ray Lyman WilburAccording to the latest statistics available, there are about 850,000 public school special education teachers and paraeducators in America. They serve 6.3 million children, or about 9.5 percent of Americans between the ages of 6 and 21. Special education in America got its start in 1975 with the passage of the Education for All Handicapped Children Act, or what is now called the Individuals with Disabilities Education Act (IDEA). It holds that all children have the right to a “free and appropriate public educatio...2022-01-3013 min
Medical MotherhoodCaution: Handle with Care“You've got to know when to hold 'em,Know when to fold 'em,Know when to walk away,And know when to run.” — Kenny RogersI have these two extremely valuable items. They are my most treasured and prized creations, actually. I work on them every day. I’ve spent hours and hours and hours molding and shaping them. They are beautiful, glorious, amazing things. If necessary, would give up every other thing I own to keep these two items, that’s how precious they are to me.But they are also super fragile, a little exp...2022-01-2311 min
Medical MotherhoodWhy does everyone think they have ADHD?“As many of us struggle with mismatched input/output capabilities, we feel out of control. We live in a world of paradoxes, a world that seems to toss us about by inexplicable forces. Our need for control doesn’t come from a desire to be one up on others. It is often a desperate attempt to manage a situation so we can function with a degree of competence. Otherwise, it’s so easy to look and feel stupid. ” — Kate Kelly and Peggy Ramundo, You Mean I’m Not Lazy Stupid or Crazy?My brain has been going i...2022-01-1615 min
Medical MotherhoodI'm not just tired, I'm sleep-deprived. Here's why that matters.“The night is the hardest time to be alive and 4 a.m. knows all my secrets.” — author Poppy Z. BriteThis week, I was listening to a researcher on NPR talk about how they found that nurses who worked the standard 12-hour shifts were more likely to burn out, more likely to make medical mistakes and more likely to have dissatisfied patients.Grumpily, I wondered how that 12-hour shift might go on 4 hours of sleep, after years of back-to-back shifts, in your own house, with your own children, and while trying not to snap at the Sp...2022-01-0915 min
Medical MotherhoodA dream home for an accessible life“Every building, moving forward, that’s built should feature accessibility for all.” — Courtney LackeyReaders, I have something truly special for you this week. When I started Medical Motherhood, I knew that there were so many fascinating, heart-wrenching, heart-warming stories about raising disabled children that simply weren’t being told. I needed a niche publication to tell those stories, but I also wanted to partner with traditional media outlets to get more of these stories out in the mainstream. (And if you are one of my new subscribers, welcome!)Last week (yesterday in print and...2022-01-0209 min
Medical MotherhoodThe gifts of raising disabled children“When faced with adversity, gratitude helps us see the big picture and not feel overwhelmed by the setbacks we’re facing in the moment.” — Robert EmmonsIn my life, Thanksgiving is a holiday of food and gratitude. This is a time of year that I count my blessings, reminding myself that even when all is dark, a light still shines.Gratitude is hard. Gratitude does not excuse injustice. Gratitude is not weak.“In fact, gratitude can be very difficult because it requires that you recognize your dependence on others, and that’s not always posit...2021-11-2810 min
Medical MotherhoodMama, it's not you. Oregon's youth mental health services really are in free-fall“It has taken a pandemic to lift the veil on that which has been hidden in plain sight for decades. The problems will not be solved with more of the same. Meaningful systemic reform will require a radical transformation of business as usual, a commitment to financing, and robust standards of accountability.” — Carol DickeyI am a terrible parent.That’s what everyone says, right? So it must be true.Kids like mine just need to be disciplined. Kids like mine need less screens. More healthy food. More structured time. Less structur...2021-11-2112 min
Medical MotherhoodOur systems were built on unpaid and underpaid female work. They are crumbling without it.Hey folks, I’m trying out Substack’s audio feature this week. (It’s a trial feature here on Medical Motherhood — I only had time for one take so it’s far from perfect!) Please let me know if you find it useful.“If serious people never wrote deeply about the household, about work and gender and money and race, we couldn’t expect things to improve. If the centrality of these domestic chores was consistently denied, then women would just keep doing all the work.” — Megan K StackWe don’t value the work that women...2021-11-1409 min
Princeton SparkPEC: Working at Entrepreneurial SpeedWe do something a little different in this episode: We turn the mic around and answer the question: “What does the Princeton Entrepreneurship Council do?” To help us answer this question, we talk to several Princeton alums whom PEC has helped, and more.
For more Princeton Spark, follow us on Twitter @PrincetonSpark and Instagram @PrincetonSpark, and check us out on the web at princetonspark.com.
SHOW NOTES
Lauren Bender is the Princeton AEF Program Manager. You can reach her at labender@princeton.edu. Read more about AEF at entrepreneurs.princeton.edu/aef. Get in tou...2019-11-0723 min