In Her Words: Shannon Bradbury
A single mom explains how leaving bureaucracy behind was the only way to save her child's life
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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 it’s like to raise two children in a rural area, both with very difficult medical conditions.
What follows is another mother’s story, in her own words. Shannon Bradbury, a single mom, explains how she came to the conclusion that traditional school would have been a death sentence for her child.
If you want to share your own story get in touch.
“You don’t know what you can do until you’ve been doing it for a while. When it comes to having a kid with any sort of medical issues – psychological, physical – you just, you roll with it. And you adapt as you go.” — Shannon Bradbury
Editor’s Note: Shannon’s child, Newt, uses they/them pronouns.
I had just got out of high school.
I got together with this guy who was quite a bit older than me — I was 17 at the time.
I was really super young, didn’t know what the heck I was doing. My dad had died, my mom and I had a really rough relationship, so it was just kind of me.
We were together for a long time. We split up when kiddo was about 2 years old. It was a really abusive relationship and there were a lot of accusations of me being mentally unstable, not a good mom. But he was the mentally unstable one, and the abusive one.
Any time he would call the police, he would injure himself. I’m sure the police have a couple of reports somewhere saying I’m the attacker. It took the same police officer showing up for two calls in a row for them to recognize the pattern. That was what was finally able to get us out of there.
There was just a lot of tearing me down, saying I wasn’t a good mom.
That was a lie.
I mean. I’m not perfect, by any means. But way better than this guy would have been.
I got full custody. I was smart. He had a drug problem so when his parents sent him to rehab in California, that’s when I asked for the divorce. I got everything I asked for.
Still, it was kinda tough, ‘cause I was living with my mom. She had cancer at the time. My sister took care of the kid and I was a nighttime nurse for my mom. It was a lot of just surviving day-to-day.
They were born premature — nine weeks premature. I forgot that part. Milestone-wise, they caught up by a year and a half. My kid was walking and talking, all that stuff by a year and a half. I wasn’t really looking for anything — signs of future things to come….
Medical issues come in stages; they don’t always come all at once.
I kinda had a few concerns right around school age. I started noticing certain sounds would really get to them, certain textures would really get to them. They could not touch a wet paper towel for the life of them. Could not. And they never really liked fireworks — unexpected things like that — and we just kind of adapted life around it until they hit about 9 years old and they had their first dissociative breakdown.
When you have a 9-year-old screaming their head off in their room that someone is trying to kill them — that’s a terrifying thing.
I took them to the hospital where they were diagnosed with bipolar disorder. Super duper young presentation of it, too. Usually people get diagnosed in their early to mid-teens. Here I’ve got a 9-year-old dealing with it.
On top of that, sensory things kept getting worse. Noises, bright lights, all these different things started stacking up.
At the time, I was focused on getting the bipolar disorder under control: meds, doctors. I wasn’t looking at a sensory disorder until their psychiatrist mentioned something. At the time, they said it was sensory processing disorder but that’s an outdated diagnosis for autism.
I always told them: my job is to make the world fit around you, not to fit you into the world. Because if we try to change you, it’s not going to work. They — finally, at 16 — they’re like: “Mom, you’re right,” and I was like: “Yes, it sticks!”
If there are programs that I have access to, I’m not aware of them. Because bipolar disorder doesn’t automatically get you assistance. Autism does, autism gets ADA protections. Like: they need to be able to wear headphones to muffle sounds, block it out. But for somebody who “just” has bipolar disorder, there’s nothing like that. You don’t show up to work because you can’t necessarily function that day? Oh well.
That aspect of it is just getting the right words on the right piece of paper. It’s so frustrating. It should not be this hard.
There’s not enough people in power who understand that. Like: How about we help you? Instead of: How can we profit off of you?
We are working on getting the official autism diagnosis. Now that they are 16, we need to start looking for a job. For Americans with Disabilities Act protections, we need an ADA-compliant diagnosis. That’s usually the hard part. Sometimes it just takes screaming at the right people.
I prefer not to go that route, but I’ve had to.
That’s really hard. To watch your kid who has a big personality — not only to have to deal with a disability at such a young age — start to shut down.
I don’t know, I sometimes stop and ask myself: “How am I doing this?” You don’t know what you can do until you’ve been doing it for a while. When it comes to having a kid with any sort of medical issues — psychological, physical — you just, you roll with it. And you adapt as you go.
It’s like you learn this whole new language. You learn how to talk to doctors and psychiatrists, and they all speak slightly differently.
I’m glad I had a high school health class to learn some of this terminology. It’s better to have a leg up than somebody who is just now dealing with these things. You just learn how to absorb information really quickly. There’s some days I don’t even realize it until it’s 10 o’ clock and I’m just exhausted from talking to people all day.
Middle school is hard enough when you can blend in with everybody. But working with the staff at this middle school was a nightmare.
We decided… I say “we.” I don’t know why I say “we.” It’s me. It’s my decision. I always say “we;” I don’t know why. It makes me seem bigger or something.
Anyway, when middle school started, day one, I took the day off work to attend their 504 meeting. [A 504 plan is a specialized accommodation for school.] Only one out of five of their teachers showed up. Only one.
How are we supposed to get the rest of these teachers on board if they’re not there, if I’m not able to talk to them and explain?
They reassured me: ‘We’re taking notes, we’ll cement down the language on the 504 and everybody was going to comply with it, 100 percent.’
And nope. Did not happen. Did not happen at all.
The first week of school is usually calm, right? This school started with assignments right away. And right away I could identify the teachers who were going to be a problem, and, sure enough, it was three out of the five teachers who weren’t there.
My kid’s 504 plan states clearly that they need fewer questions on a page. The more stuff you stick on a page, the more my kid is going to see a brick wall in front of them. Yeah, you might have to change your formatting a little bit, but this is what this kid needs to succeed.
I waited a couple days, but then they were getting attacked in the hallways. There are 1,000 kids in that school. They would get tripped in the hallway; they’re having their backpack taken away; and the teachers are doing nothing. And we’re still getting the same exact worksheets and the same exact number of problems.
So I call the councilor. Strike two: that didn’t do any good. So I called another meeting. Four months went by with this stuff. In that time, I realized I was going to get nowhere. I could scream until I was blue in the face —politely — and all it was doing at the time was making my kid shut down.
That’s really hard. To watch your kid who has a big personality — not only to have to deal with a disability at such a young age — start to shut down. To watch them turn into a living being instead of a human being. Eating, sleeping, going to school, etc., but with no life in them.
So we switched to Washington Connections Academy [an online public charter school]. Most teachers there were actually following the plan, without me having to be the bad guy. Lo and behold, this school actually had all the teachers on the first phone call. And they were asking questions. They asked all the questions and they did a really good job.
A couple years go by this way. I worked in Portland and, luckily, I was able to have a flexible schedule. I could run my kid to orchestra [still at the neighborhood middle school], drop them off, pack them up. My ex-boyfriend helped with transportation. If he couldn’t — I had their biological father’s sister. There was always somebody who could help out when I needed it. It really helped that my boss had been a single mom for a lot of her life, too. And kid’s always been really self-sufficient.
Middle school was kind of uneventful, at least. For high school — they had kinda said, ‘I’m starting to miss my friends,’ after two and a half years of online school.
Vancouver has special programs you can apply to — performing arts, science-based. The one that my kid ended up getting into was Flex Academy — it’s like a prep school, but not what you’d imagine. This school had a cap at 125 students with 20-25 kids in each grade level. Had the pandemic not hit, it probably would have worked really well for them.
But, the pandemic hit.
A week into them being ready to start this school they were like: “Nope, we’re going online.”
So for the first half of the school year, we were back to online. We were like: “OK, we know how to do this.”
Except for… it was the glitchiest system. They hadn’t figured out Zoom and you had to stay on; the teachers had to have the camera on you. We had a lot of technical issues. And, again, compliance on the 504 plan. And, again, it was because the teachers weren’t involved upfront.
And the teachers couldn’t meet the kids in person. That made it a lot more difficult for them too. But they also had — for a lot of these kids — a written document, a plan of how to do it. …I may be a little bitter. You get tired of fighting something that’s supposed to come so easily.
So we did the 100 percent online thing. Then the school decided they could bring in a very small number of special needs kids. But by that point, anxiety over Covid exposure kinda took over. That kind of anxiety colors everything that you do. If [the kid has] something chewing at the back of their mind, they won’t do it.
So then we were still trying to get teachers to catch on to this very simple 504 plan. Very simple. If it’s word problems, no more than three. Math, no more than 20 problems on a page.
Getting teachers to comply with it — and continue to comply with it — is just like pulling teeth.
I’ll be the mama bear. I don’t care if they like me. That’s fine. But it was just getting really, really frustrating to my kid as well because they could see that their grades were just dropping and dropping and dropping. They weren’t getting what they need from the teacher to succeed. Not on a Zoom call where they’re cutting out all the time and there’s all these other kids. It just got to the point where they wouldn’t even ask any questions anymore.
My kid’s like me: A very “but why?” person. When it comes to school, a lot of it is: “Because your teacher said so,” and when you’re that kind of person it’s like: “That’s not a reason.”
We actually ended up withdrawing March 2021. No matter what we would do, they couldn’t get their grades up. They only passed one class.
In the state of Washington, you only have to pass. They won’t change your graduation date. They won’t hold you back. They just kind of continue advancing kids through, even if they got a D. If they show up, they’re on track to graduate. Which is really unfortunate.
We took March to September of last year off. We were adjusting medications, addressing mental health issues, sensory things. The pandemic only made a lot of things more obvious. Like proximity to people. They don’t like a crowded room; they don’t like more than two people talking at the same time. And that’s a societal norm out in public. The intolerance for those types of sensory input just became glaringly obvious.
After we pulled out of Flex Academy — the brick and mortar school — we went back to Connections Academy, which is what they were in for middle school. But with the pandemic, so many kids were enrolled. Teachers had 40 to 50 kids. They didn’t have the time for individualized help. When it came down to essays, papers, anything that required more than two words for an answer, we were getting really, really delayed feedback.
My 16-year-old doesn’t quite have the same experience as I did, where, if something is a challenge and a lower grade than perfect, for whatever reason that’s tied to their self-esteem and self-worth — and for me it never was. For me it was: ‘Am I passing my class? Great. Am I going to graduate? Awesome.’ I had bigger things to worry about at that age.
The situation really was that dire. Like if I had continued to push them through school, I would have a dead child.
Around the same time as they were struggling through high school, their stomach quit working. They have full-on gastroparesis at this point. (Thankfully, it’s been helped now with medication.) At that time, they couldn’t eat anything without throwing it up.
We ended up in the hospital last April. That’s when a lot of things that I wasn’t aware of came up. There were some self-harm issues that I hadn’t been aware of. It was the combination of the stress of their stomach and the pandemic and schools just not being built in a way that’s kid-friendly — it’s more metric-friendly and meeting whatever benchmark the state says they need to meet.
We just seem to always come up to always have everything stacked against their success. A lot of times, no matter what I would do, no matter who I talked to, how many phone calls I made, how many meetings I had, it just wouldn’t change things. No matter how many times I would sit with my kid and say, “OK, what do you think you could adapt to?”
It was getting to the point where every single day they were breaking down and crying. And upset and angry. And it just… stopped being worth it. It did.
They’d been talking to their councilor about it: “Talk to mom about getting your GED instead.”
Sometime after we got home from the hospital — after we got the right medication that helps them — I realized school just wasn’t working. I realized if I keep pushing them through this, I was not going to have a kid any longer.
It’s a terrifying thought. It’s not worth it. Like yeah, life is hard, but it shouldn’t be this hard. There ought to be a way to get an education that still counts.
Getting a GED — when I was in high school it meant you were a deadbeat loser. It’s not that anymore. It’s really rigorous. Luckily, their oldest cousin had just gone through the GED process. Even he said: “You know, [school is] too big of a struggle, it causes too much anxiety. I’m a teenager and I feel like I’m an old man.”
I had to make that decision of: enough’s enough.
There was a lot of me saying: “What did I do wrong?”
You do kind of sit back sometimes and think: It really just should not be this difficult to get doctors and therapists and teachers and psychiatrists all to sit up and listen. I shouldn’t have had to fight with the health care system for three months when my kid is losing weight with a constant stomachache just because it would take three months to get an ultrasound.
So we went to the emergency room on a bad day and we forced the issue. Then we had a diagnosis right away.
Now we’re just working on getting their stomach back in a good place. Changing antidepressants — the one that really worked for them ended up giving them seizures. Also the focus is on getting the autism diagnosis. Get the diagnosis so they can get the accommodations they need at a job. And study for the GED.
But yeah, “dropping out” — that’s what they did. I try to come to terms with it. That whole thing is a ride. You already feel that you’re not doing enough as a single parent. To then have to say, my kid now is technically a high school dropout. There was a lot of me saying: “What did I do wrong? Was I not there enough? Was I not communicating clearly enough with these teachers? Is there like a magic word that would have made everybody understand? Or was it all the situations added up to a no-win situation?”
It messed me up for a while. But luckily, I had people I could talk to to reason it out. The situation really was that dire. Like, if I had continued to push them through school, I would have a dead child. When you look at it from that aspect, it’s like the dumbest question ever.
Why am I forcing them through school that’s not going to get them anywhere but hurt?
It’s much more manageable now. Not having school, getting the physical and mental health stuff sorted out. We have more mental capacity, more energy to handle the other things.
I do work with their psychiatrist — we talk with her like once a month. But medically and psychologically, yeah, it’s all me. I have to make all the phone calls; I have to try to find ways to fit in appointments with work or whatever.
A lot of programs we just don’t qualify for anyway because I make too much money. And that right there, that sucks. On paper, sure, I might, but that doesn’t translate to how much is in my bank account and how much I’ve spent on doctor’s visits and anything else we need. In the eyes of the government, this is how much you make before we take our cut.
The how-can-we-profit-off-of-you mindset of the education system, of the medical system in this country, it’s just profiting off of people.
We can only function in the current parameters of our system and those parameters are limiting. Very limiting. Again, a lot of the accessibility issues involve having the right words on the right pieces of paper from the right people.
I wish they would stop making life more difficult for people who already have obstacles in their way.
Because it’s bad enough, being diagnosed with bipolar disorder at 9 years old to then have schools that don’t want to support you; to have teachers who are supposed to protect you, don’t; to have administration who is supposed to help you, don’t, until you scream loud enough.
Bureaucracy has made it more difficult than it actually has to be.
We’ve got a really good support system though. Without even realizing it, all the different people in our life meet a different aspect of their personality and can relate to them on different aspects. I don’t know how that fell together like that. It just all fell together somehow. I got lucky. It all fell together without me even realizing.
They have the support they need, I just cut the bureaucracy out of it.
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world.
• From 12news.com: “Arizona becomes third state to pay parents for taking care of medically fragile children”
COVID-19 has added to the challenges of providing around-the-clock care for Tori due to nursing shortages and Laura's inability to get a job outside of caring for her.
It's challenging for most families with medically fragile children like Tori to stop working to provide necessary medical care. But after Arizona House Bill 2521 was passed last year, the state has become the third to approve the Family Licensed Health Aide (FLHA) Program.
“A lot of times this may be the first time a family member can contribute to some type of income,” said Colby Kostur, Regional Vice President of Long-Term Care at Team Select Home Care.
• From CNN: “Sesame Workshop debuts a new character who uses a wheelchair”
Ameera also happens to use a wheelchair or forearm crutches because of a spinal cord injury. That small detail is meant to acknowledge the estimated 12 million people with disabilities around the world who have been forcibly displaced. The hope, the Sesame Workshop team says, is that children with physical disabilities will see themselves in Ameera, and that able-bodied children will see Ameera as not so different from them after all.
“We really wanted to bring in a new character who uses a wheelchair or other mobility gear because so many of the children in the populations we reach use mobility care,” Scott Cameron, head of international production at Sesame Workshop, told CNN. “We wanted them to feel seen on camera.”
• From No One is Coming to Save Us (podcast): “Why the Labor Shortage Is Hitting Child Care Hard (with Lea Austin)”
“This is a service that is built on the backs of the women doing the work. Right? It relies on their exploitation. It relies on paying them low wages. And, you know, at the center of that is just the deep-rooted devaluing of work performed by people of color and by women.” — Dr. Lea Austin, Executive Director of the Center for the Study of Child Care Employment at the University of California, Berkeley.
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