We medical mamas have our own secret language...

Plus: Tim Walz and Collin Ferrell both opened up this week about their sons' disabilities; meanwhile, Kentucky's Medicaid waiver waitlists continue to grow, despite billions in rainy day fund

How many of you know what all those acronyms mean??

For the un-indoctrinated, I’ll translate the comic. The first mom says that since her child was diagnosed with autism spectrum disorder, the functional behavior assessment (a measure of behavior patterns and triggers) through developmental disabilities (a social services agency in each state), the Direct Support Professional (an in-home aide that can have several titles, depending on the state you live in) can better work on the child’s activities of daily living (tasks like getting dressed and eating).

The second mom replies that that will help with the Individual Education Program (a school process that is separate from social services). Even though her own child qualifies under cerebral palsy (one of 13 ways a child can qualify for an IEP), the school-based physical therapist helps with the ankle-foot orthotics and the speech language pathologist helps with the child’s augmentative and alternative communication device. She then says that she signed a release of information for the gastroenterologist so the para (paraeducator — another aide that has a lot of different titles depending on your jurisdiction) could be trained on the gastrostomy-tube, a surgically placed feeding implant. Such feedings at school are guaranteed under the federal Individuals with Disabilities Education Act.

You’ll have to figure out what the coffee order means cuz I have no idea!

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.

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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 People: “Tim Walz and His Wife, Gwen, Open Up About Son's Non-Verbal Learning Disorder: 'His Secret Power' (Exclusive)”

Minnesota Gov. Tim Walz and his wife, Gwen, are opening up to PEOPLE about their "brilliant" 17-year-old son, Gus, who has a non-verbal learning disorder, ADHD and an anxiety disorder — all conditions that they call his "secret power."

In a statement shared exclusively with PEOPLE, Tim — who was just selected as Kamala Harris’ 2024 vice presidential candidate — and Gwen say that they saw glimmers of Gus' unique qualities at an early age.

"When our youngest Gus was growing up, it became increasingly clear that he was different from his classmates," the couple tell PEOPLE. "Gus preferred video games and spending more time by himself."

The statement continues: "When he was becoming a teenager, we learned that Gus has a non-verbal learning disorder in addition to an anxiety disorder and ADHD, conditions that millions of Americans also have."

[…]Speaking to PEOPLE about their son's learning disorder, Tim and Gwen say Gus "is brilliant, hyper-aware of details that many of us pass by, and above all else, he’s an excellent son and brother to his sibling." […]

• From WAVE (Kentucky): “Waiver wait list growing, swallowing hope for parents of special needs kids”

In the Commonwealth of Kentucky, parents of children with special needs because of severe health conditions are supposed to get help if they are granted what’s called a “waiver.”

Waivers get them access to Kentucky Medicaid programs that help with a wide variety of care and living assistance.

In my last report on this subject, Jeremy Haydon qualified for all the waivers he supposedly needed for his son Andrew. He was then told he couldn’t get any specialty care in Kentucky unless he gave up his parental rights.

”So the answer to your inquiries was that you need to sign your child over to the state?” I asked.

“Correct,” Haydon said. “Just a feeling of loss and hopelessness and in a hole I didn’t know how to crawl back out of.”

Fortunately for Jeremy and Andrew their state representative made calls and got the state to enter into a special “single case agreement” that immediately provided everything Andrew needed. One case solved, but we’ve learned for thousands of other Kentucky families in similar circumstances it’s an entirely different kind of nightmare.

”Well I cried a lot,” Kimberly Hurt said. “You feel hopeless, like what am I going to do? What am I going to do?”

Hurt cried in hopelessness after learning she qualified for a waiver for state help with her daughter, who she says has severe autism, but the wait list for what’s called a “Michelle P waiver” is running eight to 10 years.

[…]According to Sheila Schuster of the Advocacy Action Network, which tracks all this, the wait list for Michelle P waivers has grown from 8,398 in November 2023, to 9,212 in July 2024. The overall waitlist on Michelle P and other waivers for special needs kids has grown from 12,723 to 14,849 in the same time frame. […]

• From HuffPost: “Colin Farrell Names The 1 Thing He Has ‘Guilt’ Over As A Parent Of A Disabled Kid”

Colin Farrell thinks his son is “magic” — but he’s also aware of the complexities of raising a child with a disability.

On Wednesday, the “Sugar” star opened up to People in a video profile about his son James, 20, who has an intellectual disability called Angelman syndrome, a rare neurogenetic condition that also affects his mobility.

“He’s bold as brass,” Farrell said while describing James’ personality nearly 12 minutes into the video. “And he’s cheeky as they come, but he’s just a damn fine young man.”

Yet, despite clearly adoring his son, the actor said that raising a child with a disability is challenging and that he often feels “guilt” when he does “nice things” for himself.

“It’s so all-encompassing that if you do something nice for yourself, or give yourself a massage, or go on a little two-day road trip with your husband or your wife, you feel like you’re being irresponsible, you feel like you’re neglecting your child,” Farrell said.

Now Farrell wants to help provide a place for parents and their disabled children to get a little self-care.

The “Banshees of Inisherin” star told People that he is launching the Colin Farrell Foundation, which supports adults with intellectual disabilities through advocacy, education and programming. Farrell was inspired to start the foundation for a number of reasons, but one is that his son is approaching adulthood.

[…]Farrell explained that he doesn’t just want to help adults with disabilities, but also disabled kids and their whole families, by providing them with a little respite in the form of his own camp.

[…]“So the parents could have a good time, they could get massages, they could splash about, they could sit in the jacuzzi, and their child would be doing activities during the day, and then at night, we could all come together there’d be a meal shared and cinema under the stars.”

Parents of disabled kids should get “the support that they deserve,” he said.

“I obviously have a certain amount of means, having had a career in film for 20-plus years now,” Farrell said. “And we still struggle in finding the support that James deserves and should rightfully have.”

Ultimately, the “In Bruges” star said, he wants all families with a disabled child to have better access to “intervention, therapeutics, [and] social environments that their child can feel like they belong within … and find a world of meaning and a life of connection.” […]

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