This Mom Blogger With ALS Wants Other Disabled Parents to Know They Aren't Alone
Imagine you’re a young mother, dealing with the relentless physical demands of a baby. You know, the ones like making sure they don’t stick something in their eye, or picking them up and putting them down for non- stop mealtimes and diaper changes. These are demands that can sap any able-bodied person’s energy and mental sanity.
Now imagine you’re that same young mother, and you’re also living with amyotrophic lateral sclerosis — more commonly known as ALS — a terminal, degenerative motor-neuron disease that is slowly paralyzing your arms.
This is the reality for Allie Schmidt, a Nashville mom to a one-year-old son, and the creator of Disability Dame, a blog and online resource for parents living with chronic illness and disability.
About five years ago, Schmidt was at her first job in corporate marketing, when she noticed her pinky “just stopped being able to work,” she tells SheKnows. A year and a half later, Schmidt was having trouble lifting weights at the gym, and she couldn’t move her left thumb. Eventually, after an incorrect diagnosis and an unnecessary surgery, Schmidt met with a neurologist who began administering multiple tests, giving her an early-onset ALS diagnosis when she was still in her 20s.
“There’s not a definitive test for ALS,” Schmidt explains. “You basically just rule out every single thing, until it’s the only disease left on the table. And that’s where we are at this point.” This diagnosis unwittingly places the 30-year-old Schmidt in an exclusive club; according to the ALS Association, most people who develop the disease are between the ages of 40 and 70 – with an average survival time of three years. (It should be noted that Stephen Hawking, the best-selling author and renowned physicist, was diagnosed with ALS in his early 20s and lived to be 76.)
Schmidt says she’s not in pain, but she has very little use of her right arm. While she can still use her left hand to do things on her phone, “it’s very, very limited.” Adding to the ambiguity of this kind of daily existence is the lack of treatment options for those living with ALS.
“There’s no medication or physical therapy [doctors] can offer me,” says Schmidt. There’s also the question of whether or not the disease will spread to her legs, which would be the only reason for Schmidt to seek medical attention going forward. Understandably, at least for now, she has made the decision to “just live my life.”
A huge part of “living her life” is the work she does with Disability Dame. Although Schmidt is fortunate to have both her husband (his working from home has been one of the rare positives of the COVID-19 pandemic for their family) and a nanny to help her with physical things like getting her son in and out of his crib, this version of reality can take an emotional toll. All the more reason why a site like Disability Dame has the potential to support so many others in a similar situation feeling similar feelings.
“It has definitely affected me mentally,” Schmidt says. “Sometimes I feel like I’m an inadequate mother because I can’t do certain things with my son.”
After learning how few adaptable products there were on the market for parents living with disabilities — and even fewer online resources like blogs — Schmidt launched her site in March 2020, with the intention of helping “other moms that are in the same position as me.” She writes every article on the blog, offering experienced advice like “13 Critical Questions to Ask a New Doctor (And Questions to Avoid) and “7 Practical Tips for Parenting With a Disability.”
“I hope at a certain point I can open it up to contributors,” she says, but for now, thanks to tools like the Voice Control command in Google docs and the design app Canva, Disability Dame remains primarily a one-woman operation.
A post shared by Allie Schmidt (@disability_dame)
In the short-term, Schmidt is currently working to build out Disability Dame’s content library, posting about every two to three days on everything from disabled parenting to searching for a diagnosis to self-care. But she is also thinking ahead: She hopes to start a non-profit in a year or so, and has a long-term goal of creating a line of adaptive parenting products and making them available on her site.
“You’re seeing more and more inclusive products now,” says Schmidt, pointing to the Tommy Hilfiger Adaptive clothing line as an example. “As people continue to share their stories, we’ll see that it’s a bigger niche in the market that’s completely unfulfilled at this point. I want to create Disability Dame to get the research to figure out what people need, and then create products that are going to help them.”
Schmidt got the ball rolling on this type of research while working on her her Disability Dame post, “24 Clever Baby Products for Parents With Disabilities.” It was then that she discovered more gaps in the market — particularly that there weren’t any adaptable changing tables for parents in wheelchairs.
“I don’t think I’ve even found one changing table on the market where a person that’s in a wheelchair can actually get underneath the changing table,” she says. “Like, there was no cutout for their wheelchair to fit while they were changing their baby.”
She has also earned her certification as a transformational life coach, and looks forward to someday “coaching clients through what it’s like to deal with tragedy and help them see there can be a brighter path on the other side.” But at the moment, Schmidt has opted to focus her energies on Disability Dame and ALS advocacy, which has included communications with Tennessee senators Marsha Blackburn and Bill Hagerty. Sen. Blackburn, a Republican, is a member of a bipartisan group called the Senate ALS Caucus, committed to working with ALS patients and health care providers to develop treatments and, hopefully, a cure for this debilitating disease.
“What I have realized through starting my site is there’s such limited information and resources out there [for parents living with a disability],” says Schmidt. “It’s just not talked about.”
But if Disability Dame is any indication, not only is Schmidt talking about parenting with a disability, she’s leading the conversation.
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