Medical Motherhood

“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-portlan...

The 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...

I’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 wh...

This 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 Milw...

I 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 benef...

The 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 up Snippets of news and opinion from outlets around the world....

It’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 significa...

“Families have no choice, often, but to call the cops on their own kids” — Abigail Kramer, reporter for The City TW: 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...

“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 voca...

A 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...

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 r...

“Some like it hot, some like it cold, Some like it in the pot, nine days old.” — nursery rhyme Across 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...

“As an influential artist I’m dedicated to being part of the change I’ve been waiting to see in the world.” — Lizzo Language 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...

“‘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...

“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 Marshall The second Sunday of every month Medical Motherhood publishes Where...

“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 researcher Another of my speaking engagements w...

“It’s hard because you want to give advice to people on an individual level but it’s a systematic issue.”— Sabine Wilson, caregiver Medical 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...

“His heart is too full, and no words to release it.” ― Gabrielle Zevin, The Storied Life of A.J. Fikry I 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 car...

“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 Frank It 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 questi...

Hello 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 wi...

“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” — Margaret Mead Medicaid 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 arg...

“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, Unseen Throughout 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...

“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-LeDoux Today’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...

“The hand that rocks the cradle is the hand that rules the world." — William Wallace Speak 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...

“I went in with the assumption that there’s resources that are available. Now, that sounds crazy.” — Amanda Dyer, Unseen producer and co-director It 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 famil...