Five Ways Schools Can Actually Help Disability Families

Plus: Loss of $2M threatens Michigan autism program; Minnesota medical mom publishes encouraging book; A medical dad's emotional journey to learn about his brother who died in an institution

Nov 16, 2025

This week, I had the honor of giving the keynote address to the 2025 RSOI Feeding Seminar. Oregon’s Regional & Statewide Service for Students with Orthopedic Impairment conducts the conference to inform feeding teams in schools.

My speech was about 30 minutes but I always assume Medical Motherhood readers are strapped for time — thus why I condense articles for busy readers! — so I offer this abridged version of my comments to the more than 90 conference attendees:

Hello, and thank you for inviting me. I’m so heartened to see so many people here on a Thursday morning ready to learn about feeding challenges. Thank you to Chandra, Cindy, and everyone at RSOI.

This time of year always reminds me of my mom. She loved the holidays. In 2014, she came up from Eugene to look for an apartment near us in Portland. She thought she had more time as her ovarian cancer progressed — but that wasn’t to be.

The weekend before Halloween, she went into the hospital. Just before Thanksgiving, she came home on hospice. The week before Christmas, she died.

When I took her to the ER that fateful day in late October 2014, I thought it would be for nausea meds. Instead, doctors said she needed a gastrostomy tube. Ironic. My son Malachi — just four at the time — had long been scheduled for a g-tube that very same week.

On Halloween day, Malachi was recovering well, so I dressed my twins as Mario and Luigi, myself as Princess Peach, and we visited my mom in the hospital. I felt ridiculous dressing up during the week from hell — but that’s what medical parents do: we dance between lightning strikes.

When we showed up to the hospital, my mom thought she could normalize Malachi’s new hardware. She lifted her gown to show him her g-tube saying excitedly “See? Nana got one too!”

Malachi stuck out his bottom lip. Then wailed wordlessly.

My mom’s face fell. “Yeah,” she said. “You’re right. It is sad. It sucks.”

But I am grateful for the g-tube. It gave me two more months with my mom. And it’s given me more than a decade with my son. Today Malachi is 15. He eats most of his calories by mouth and uses the g-tube mainly for hydration and meds. It’s not always been easy, but it’s now a normal part of our life.

If I could have you take one thing from this conference today, it’s this: feeding challenges are complex. And when things are that complex, the only experts are the people who’ve lived it. That may be the person themselves, or — especially with school-aged kids — the parent. I don’t have a medical degree, but I have a doctorate in Malachi. I know what he can safely eat. And even with that, I would never presume to know how to feed another kid, even with the same diagnoses. Because every child’s relationship with food is unique.

My journey started in 2010 when my twins were born 10 weeks early. One had a brain bleed and has quadriplegic cerebral palsy. Early on in my twins’ lives — after I had shut the door on yet another government worker who offered no real help — I counted. Just months into our journey, I had already spoken to 16 different social workers.

Later, during their early elementary school years while I was working as a reporter for the Portland Tribune, I mapped out every person I had to communicate with about my kids’ care. Not even names — just roles.

My number, at that time? Seventy-seven. Remember: not individuals. Seventy-seven different roles. The number of actual people was much higher.

Someone at a previous talk called that my “support network.” Those people are not my support network. My support network is other moms and dads in the trenches. The ones who know what it’s like.

Sometimes, far too rarely, but sometimes, one of those 77 roles turns out to be filled with someone who gets it. Someone who minimizes the paperwork and unpaid labor they ask of us. Someone who knows that we are tired beyond measure because we have been doing this life 24/7 for as long as our kids have been alive AND because we know that if we ever stop, it’s because our kids are dead.

I want you to be one of those people. I know you’re here because you care. So here’s how to help:

1. Lower the administrative burden.

If you ask parents for protocols, use them. If you ask for chart notes, read them. Don’t make parents jump through hoops unless the hoops are helping.

2. Recognize that things change.

Just like with anyone, but especially during childhood development, diets and appetites can fluctuate rapidly. Tubies CAN taste. They feel tube yanks. Be respectful. Be flexible. This is their normal.

3. Balance safety and sanity.

If my non-tubie kid eats Pop-Tarts at school, no one blinks. But if I send extra Pedialyte to put through the tube on a hot day, it’s treated like contraband. Enteral feeding is nutrition, not medicine. Be reasonable and use common sense.

4. Tap Medicaid in Schools.

Oregon has changed its rules and the Centers for Medicare and Medicaid has made it easier than ever. You can now bill Medicaid for feeding services. Charting systems like ORMED are here to help. It’s a major funding opportunity—and it starts with school staff like you logging services.

(Did you miss my 2023 NPR article on Medicaid in schools? Read it here: Students could get millions more in Medicaid healthcare dollars. Why aren't they?)

5. Know your piece of the puzzle isn’t the whole.

If you are the SLP, OT, PT, RN, or administrator, you may be the expert on a small slice of a child’s body, mind or environment. But none of you know the whole child. Only by working together — with each other and with families — can you see the full picture.

I hope today’s conference gives you more than information. I hope it gives you perspective. I hope you go back to your schools and truly listen to the families you serve. Because while you may be an expert in children in general, they are the experts in their child in particular. And they are tired and need your help.

Feeding challenges are many things. But to us, they are normal. They are a tragedy and a miracle, a blessing and a curse. Both. Always both.

Medical Motherhood’s news round up

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

• From Bridge Michigan: “Michigan autism group rallies to save key program after state slashes $2M”

A Michigan organization serving people with autism and their families is raising money and trying to relaunch a signature program after a “devastating and unexpected” loss of state funds.
The Autism Alliance of Michigan says 18 people have lost their jobs and thousands more are delayed in getting services after the state slashed $2 million for its MINavigator from the budget in October. The program is the heart of the nonprofit organization serving families and individuals navigating the complexities of autism, said alliance CEO Colleen Allen.
[…]MiNavigator is a statewide service that provides resources and guidance to people of all ages on a host of issues related to autism such as insurance coverage, school responsibilities, job possibilities or how aging caregivers can find a residence where their loved ones with autism can live once they are gone.
The navigator service is not staffed by parents or volunteers but by professionals with degrees ranging from social work to special education to vocational rehabilitation. It is unlike any other program across the country, Allen said.
[…]Meanwhile, state Rep. Kelly Breen, D-Novi, wrote on her Facebook page last month that most lawmakers were not aware that the funding for the alliance had been removed until after they voted on the budget.
“And we are despondent,” Breen wrote. “Many of us have close family members affected, and the navigators are essential.[…”]
Exactly why the Legislature cut the funding during an “11th hour” of this year’s budget negotiations is not clear to Allen, who has spoken with many lawmakers.[…]

• From Post Bulletin (Minnesota): “Stewartville mom, nurse wants to help 'validate, encourage' other parents through illustrated book”

When parents read Allyssa Meyerhofer’s book, she hopes it gives them validation as they experience raising a child with a disability.
It’s something she herself has navigated with her youngest child, Gabby, who has a rare condition called trisomy 9p.
[…]Inspired by reading “Forever Boy” by Kate Swenson — a mom’s memoir about raising her son with severe autism — Meyerhofer, a registered nurse at Mayo Clinic in Rochester, started writing on her phone. She took cues from events in her life, from death planning to the toll of medical paperwork.
“I got that idea to create a book that was ... in the child’s voice to the parents, giving encouragement and validation,” Meyerhofer said. “It was things that I wish someone was telling me during the process.”
Meyerhofer worked with Blue Balloon Books to publish “Mama’s Heart: Understanding Love in an Unknown Special Needs World,” [affiliate link] a 24-page illustrated book, in March 2025.
[…]Meyerhofer’s big goal, she said, is to get “Mama’s Heart” into child life departments in hospitals across the country so the book’s message of support can reach more parents.
“There’s never enough support for parents,” Meyerhofer said. “Taking permission to care for yourself so you can care for your family — I feel like so many parents push that off.”

• From the New York Times: “He Died at a School for Disabled People. Decades Later, His Brother Sought Answers.”

John Scott was paralyzed in both legs when he was born in June 1955. He had a severe form of spina bifida, a condition in which the spine and the spinal cord don’t form properly. At 18 days old, he was admitted to the Walter E. Fernald State School in Waltham, Mass.
The Fernald, as many locals refer to it, was one of hundreds of public institutions across the country for people with intellectual and developmental disabilities. At their peak in the mid-20th century, these institutions held hundreds of thousands of people, some all but forgotten by their families. After reports of widespread abuses and an outcry from disability rights advocates, most of them were shuttered.
[…]Looking back, Mr. [David] Scott believes his parents were traumatized by losing not just one but two young children. Their second child, Cathy, was born with spina bifida one year after John, but she stayed at home with them and died at 13 months.
Growing up, David visited John once or twice at the Fernald, when a relative with a car was in town, but he does not remember anything about him. He said his siblings had a few faint memories of John but never got to know him because he was so young when he went to the Fernald.
In 1973, John died at the school. He was only 17; David was 7. He does not remember going to a funeral.
[…]As an adult, Mr. Scott stayed busy working 60-hour weeks as a garbage collector and raising his own family. John was rarely in the front of his mind.
That changed in 2001, when his youngest son, Michael, was born with cerebral palsy. When Mr. Scott heard the diagnosis, his first thought was of John. “Maybe this is God’s calling for me,” he surmised. He saw Michael’s birth as a second chance for a family that once handed a child to the state.
[…]He also asked more questions of Ms. Weiner, the former teacher. She became more candid, telling Mr. Scott she hadn’t believed her students were treated well.
Sometimes John came to class and “stunk to high heaven,” she said, because his colostomy bag was overflowing and his clothes were soiled.
[…]A doctor’s report detailed how John was speaking in full sentences at age 4 and knew the name of every employee in the building. “I have high hopes for his future,” John’s nursery teacher wrote in another letter.
But other records painted a picture of a mental decline, attributing the “depression” of his I.Q. score to “his deprived life circumstances.”
[…]Sometimes [David] thinks of moving Michael to a group home or residential care facility because he is tiring as he gets older and knows he won’t be around forever. But he always comes back to John.
“I can’t,” he said. “Not after what happened to my brother.”

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