This week we have an installment in our occasional series: In Her Words, which provides a window into the lives of medical mamas from all different backgrounds. In Her Words is produced through an edited and condensed interview with the mother so that we can hear her full story in her own words, rather than just soundbites.

This week’s narrative comes from Lisa Tschudi, who just launched a new podcast called Love Doesn’t Pay the Bills. (Because, as she says, no matter how much we love our children, love isn’t enough to be warm, dry, safe and fed.) She’ll showcase family stories from caregivers, as well as stories from policymakers and business leaders, to show how we can make our workplaces more flexible and accommodating to care work. Her guest on the podcast this week will be yours truly, so subscribe to her feed to hear our conversation!

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I had my kids pretty early, relatively. I had just graduated college with a degree in mathematics before my first daughter was born. I grew up pretty upper middle class, comfortable. It was always assumed I would go to college. I didn’t really have a driving motivation but I fell into these math classes and visual arts classes at UC-Santa Cruz. It was pretty relaxed.

I didn’t know too many people that had disabilities. I had a roommate in college who had CP (cerebral palsy) but it was the huge elephant in the room. We didn’t talk about it. He did not want to talk about it.

Then the summer I graduated from college, we moved, got married and had the baby, all at once. Two years later, I had the second baby. I did not want to raise an only child.

The disability, we started to realize it gradually. We just started to notice that my second daughter wasn’t meeting milestones you would expect: wasn’t sitting up, wasn’t crawling, wasn’t even babbling that much.

We started to investigate that around 6 months old — there’s something different here that we need to look at.

So we were in the process of getting referred to a neurologist when at 13 months old, she had a seizure – status epilepticus (a seizure that lasts longer than five minutes, or more than one seizure in five minutes). She was sedated to a coma for a couple of days, in a hospital.

That’s really when I fell into disability world.

The start of it.

*

My husband was our income provider, with me having just graduated from college and having the two babies. He was in a really niche job at first in the Bay Area. But there were layoffs and we ended up in Portland briefly and then to Southern Oregon where we’ve been since then.

The fact that we moved a lot definitely complicated a lot of things for me for sure. On top of being in Special Needs World, I was — not a young mom, but I was in my 20s, a mom before I had established myself or my husband had. We didn’t own our own home, we didn’t have any of those things set up before we had the kids.

So it was definitely us, over and over again, trying to find out, well, where can we live and make a living on one salary?

*

We don’t know for sure what caused it; something that happened most likely when she was still in utero. After the epilepsy diagnosis, we got an MRI that showed a small cerebellum, a condition known as Dandy-Walker Syndrome.

We ended up finding a physical therapist that was in Grants Pass — 30 miles away. She was amazing and just loved on us as a family. She did craniosacral therapy on her and I was intrigued and could feel my daughter responding to it. I ended up going to massage school for a year when my younger daughter was just starting kindergarten. I was doing class in the evening, trying to fit in all the other things, too. We really didn’t have other caregivers at all, the Affordable Care Act hadn’t happened. There really was just a void of anyone other than me being available. So I never really did anything with the degree.

I was in a state of exhaustion. That’s what I’ve learned over the years: She’s the place that I can pour into. Just her. She takes everything I’ve got. Then there’s all the emotional stuff that goes along with finding out that your child has a disability — wow, this isn’t going to go the way I imagined it when I was pregnant — and all the things you have to come to grips with. And I was driving her around to different therapies and doctors, and eventually the neurologist and dietician for her ketogenic diet.

While all of this is happening, we were really unstable financially and housing-wise. We were moving practically every year for the first 10 years. So I was always making all of those arrangements, packing, unpacking. It was just a lot.

My husband was working full-time. He was supportive when he was home but he was out of the house in excess of 40 hours a week. It was just really going through one day after the other after the other. Just getting through.

I would be up at night; I would be very vigilant of my daughter having seizures. And there would be times that I would have to act as the emergency first responder.

There was just this never-ending quality of it. When do I sleep? When do I act as a human being who might have some friends to go see? Might have some self-care routines? Might, you know, read a novel?

*

At various points we did various things for therapy. At one point we did an intensive program, three times a week.

I remember I had to go back and forth for the therapist to have a break during the several hours that my daughter was there. That really irritated me a lot. Here I am with no break, not even overnight, and I’m having to drive back and forth another time to make sure that this person can have a 30-minute lunch break!

But it was useful to my daughter. I really think she benefitted from a lot of those sessions.

We since added another diagnosis of ataxic cerebral palsy. She definitely has intellectual disabilities. She’s very challenged with her movement and her coordination and her balance. And, you know, the epilepsy. We’ve had quite a few hospital visits for seizures. Eventually, she failed several medications and we were referred to try the ketogenic diet.

A true ketogenic diet to treat epilepsy is a lot of work in itself. I was spending a lot of time creating meal plans to the appropriate specifications, doing our shopping, really reading every packaged label, measuring every meal out to the nearest gram — every ingredient in every meal — so that it would be the appropriate percentage of fats to carbohydrates that we had to calculate out — that I calculated out. Then there were supplements, prescriptions, and over-the-counter medications.

That was really intense. It did work. It was a light switch and it was amazing for her. So it was worth it. But that was where I was putting a lot of my time and effort as well.

She was on it for nine years, which is a very long time to stay on that diet. It has its own potential side effects, but it was prescribed in my daughter’s case and it did work for the epilepsy.

After the first two or three years, we had our routines and ways that we did things that cut back on the amount of effort. It still took a certain amount of time. If we were out anywhere, I would bring food along for her — even out to eat. Nothing you’re going to order in the restaurant is going to be measured out to the gram like this. So, like, doing the drive thru fast food was off the table. I’m exhausted, I want to pick up burgers — no, can’t do that.

*

I felt really left behind at a certain point. That change isn’t happening for me, that change when the caregiving isn’t so intense anymore. There’s no relief. I reached a point when my daughter was a teenager of being really quite angry a lot of the time and really feeling trapped for sure.

By that point, I’ve got one typically developing. I know what it’s like. By the time she was 14 or 16, I might barely see her in a week. She’s getting herself there, with her friends.

Being a younger mom, my vision had always been that — Well, I’ll still be pretty young when they’re grown — and that will be my time. I definitely reached a point of wrestling with that wasn’t happening for me.

Also, the financial aspects really got to be quite, quite difficult. There’s still no way that both my husband and I could work conventional jobs. There’s just too much “on call” that our systems leave to the families and too frequently that we would have to not show up for our other jobs.

I really, truly and honestly feel that I didn’t have the opportunities that most people have — and everyone should have — to earn money, and it really meant a lot to my family.

In 2014, my husband was laid off from the job that he was working at. That left us very suddenly without any income; my daughter still requiring a level of care that one of us had to be with her to an extent that really does preclude a conventional job. That was a really hard time. It really became visible to me that I hadn’t been earning a paycheck because it was all on him to go find another job and we didn’t have another income from me to help float us.

We probably would have both preferred to transition to him being the stay-at-home parent, but the jobs that I was looking at with “no work history” weren’t going to earn enough for a family of four and we couldn’t go that route.

Starting from then, I had a period of time where I really came to grips with the lack of income and the level of care that my daughter needed. It is two people’s full-time job in her case. How can I do that and be anywhere else? Also, the “on-call” aspect. How can I be “on-call” for her in the way that I need to be and do anything else?

*

My daughter is about to turn 21 soon. It’s getting better. And I do think a lot of things have improved in some pretty major ways.

When my daughter was very young, I really didn’t experience much formal support at all. It took me years to even hear that CIIS existed and that my daughter might qualify. (CIIS stands for Children’s Intensive In-Home Services, a Medicaid home services program in Oregon for high-needs children.) That was with me asking all of her doctors, asking all of her teachers, asking everywhere I could think, “Who can help me?”

We tried several different places for preschool. None of them would take her with her medical conditions. When we got to kindergarten age for school, she was put into the — what’s the word? — segregated classrooms. It was very much that.

But I needed her to be in school. That was the only care outside of myself that she had. Supposedly that was the only place that she could get the level of supports that she needed — but she had very, very little of any of those services, and she was often taken apart from her peers, shuffled around to many different schools in our area.

The last one, in 8th grade, was 30 miles away from our home. I don’t think any of the students had much language. Her speech device was thrown. They cancelled school for just that class for a day or two because the windows were broken.

Those are the kind of experiences we were having in school that were really not what I would have liked them to be. It really isolated her, and me as a parent. She’s not even meeting kids in our neighborhood. She’s not meeting kids that she would run into in the grocery store. My older one was. She’s making friends, and she’s on a track that she’s with her friends. To not have that happen for my younger one, it was really sad.

When my daughter was entering high school, I advocated for her to come back to our neighborhood school. It was a lot better. She was still in a segregated classroom but it did have more permeability with the rest of the school. She was actually hired to work as a professional actress in a world-class theater production. That was just incredible. The director knew another young man with significant disabilities and he knew there was this scene in Hairspray that takes place in a special education classroom and said, “Gee, why don’t we get some kids on stage who would be part of that classroom?” That was really cool.

Now, she’s in her last year of the 18 to 21 program. It’s going well from the perspective of she enjoys going. She’s excited to see the other students that are in there with her. They mostly take a lot of field trips to different places around town. It’s really good from that perspective.

But I’m nervous and not seeing the line from this to what happens next. It’s supposed to be developing what the next steps are for an adult life for these young people. I’m not really sure in my daughter’s case what that looks like.

We now have DSPs (Direct Support Professionals — in-home caregivers paid for by Medicaid, something that was not offered to minors before 2014 in Oregon) — awesome. It’s a challenge to hire for sure and to fill those positions. And also, regardless of being able to find the individuals, it’s not to the point where I as a parent can depend on XYZ hours. There’s an oversight aspect, on-call. I just don’t see how that meshes with having a conventional job and having the same opportunities as other people do. Even in the best cases, you’re going to have people call out from DSP positions. And it’s not the best of situations, because it can be very hard to locate people at all.

I’m really lucky in my situation at this point. My older daughter can now be the paid caregiver and my husband and I are co-owners of a business at home (Two Squared Media Productions, which supports podcasts and audio production). But a lot of people don’t necessarily have that within their family: The fact that there are three of us to one person who needs care.

And, when school is over next summer, we will have no dependable times that my daughter is in other people’s care. It will be all on us.

I’ve been starting to ask a lot of questions about work — we’re in voc rehab (Oregon’s Vocational Rehabilitation program). And that’s been going super, super slowly. I’ve asked for meetings to get established in the adult services and it doesn’t seem to be leading to much yet. We’re still in the in-take process.

That seems to be all there is, really, in a lot of the social services. When my daughter was young, especially, that was the experience: sitting, filling out paperwork, sitting in meetings. Then it would be six months later, or a year later, whatever-thing-it-was had not been provided. I had complied with all of the steps. I had replied to all of these intrusive questions — people treating my family like we’re suspects….

*

I’m thinking about the future in the sense that I’m pursuing what steps I can. But I’m also trying not to think about it because I’m not there yet. Right now, school is going great. And last summer, I realized, things were actually going really well without school.

It used to be every May I would be, like, panicked. It’ll be all on me again, for months.

I realized at the end of this summer, I didn’t feel like I had. But this summer, I had pay when I was on schedule as a caregiver. We’re in a comfortable home. And my daughter was having a good time. Every different DSP that we hire has a little bit different take on the role. A new DSP we have has been pretty amazing getting my daughter out in town, out at events, to the dog park, to musical events or whatever is happening.

I was starting to feel like, wow, maybe that will be OK as my daughter’s adult life.

My older daughter has been a real help and blessing since she came home from college at the start of the pandemic. She’s pretty clear that she still intends to pursue some other type of career, though. For now, we appreciate having her with us.

I’ve got other things starting to happen for me, separately from my daughter. Life’s as good as it’s been for us as a family. I certainly want to enjoy that even if there’s harder things coming.

I feel protective about it, this time we have now.

I want to eat it all up because it may not always be this way for very long.

*

I definitely, definitely, definitely feel very strongly about pay for parent caregivers. If I’d had an income from all of the things that I did for my daughter that would have made a world of difference for my family. We would have been in more stable housing. That would have kept us from needing to move all the time. My attention and efforts and time wouldn’t have been on that.

We would have had just a lot more confidence and a lot more calm if we knew that we could be warm, dry, safe and fed, right? Like what everybody needs. And it just was not feasible, at all, for me to earn an income any other way at the same time as doing this caregiving. We also need to have outside care that’s dependable and long enough to do another job, if that’s what the family wants.

But even then, the current systems really rely on the parent as the manager of care. The parent has to recruit and orient and schedule and a lot of times that’s not going to work with another job because there’s going to be too much irregularity in the access to caregivers.

We used to have these huge institutions where families were really, strongly encouraged to send their loved one off if they had high support needs and not see them anymore. And we, rightfully, have shut those down. And then it wasn’t replaced with anything. It’s starting to be now. But it’s just too much in the other direction of insisting on family work.

I really think about it a lot. If I become ill or injured, if I become disabled, I don’t qualify for Social Security Disability (Insurance). The rest of my family’s capacity is spent on my daughter. There’s not anything that would be there for me.

You definitely need the public and the state to take back responsibility for that comprehensiveness and continuity of care. And then on top of that yeah, family can be family. They can be encouraged, and welcomed, and appreciated, but not relied on as the sole provider.

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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 WBRZ-TV (Louisiana): “Mom trying to protect special needs daughter arrested after sending listening device to school, family says”

WATSON - A woman was arrested after she allegedly sent a recording device to school with her special needs child.
The Livingston Parish Sheriff's Office said Amanda Carter, 39, was arrested on 20 counts of interception and disclosure of wire, electronic or oral communication. The sheriff's office and the school system announced the arrest in coordinated statements Tuesday afternoon.
The Livingston Parish school system said it contacted law enforcement after administrators uncovered a recording device on campus.
Sources close to the family told the WBRZ Investigative Unit that the sheriff's office started investigating the situation after a parent sent a recording device to school with a special needs child, fearing she was being mistreated. The device was reportedly attached to the girl's wheelchair.
The WBRZ Investigative Unit has reviewed recordings of the child interacted with several unidentified adults at school.
Those recordings include at least one instance in which someone at the school jokes that they "almost slammed her," in what appears to be a reference to Gracie, who can be heard moaning during the same audio clip.

• From the Lebanon-Democrat (Tennessee): “State forced to keep disabled children in hospitals”

Children taken into the custody of the state Department of Children’s Services are spending upwards of eight months in hospital beds across Tennessee because the agency has nowhere else to put them.
The children typically land in DCS custody after being removed from homes on allegations of abuse or neglect and often carry the dual weight of trauma from their home life — and their sudden removal. The responsibility of DCS, which has a budget of more than $1 billion annually to carry out its mission, is to protect and care for these children.
Instead, DCS officials acknowledge, children are being unnecessarily hospitalized for periods of time that have ranged this year from one day to 264 days.

• From DW (German-based media group): “Why Africa's physically challenged remain 'invisible’”

[…]More than 80 million Africans live with disabilities, according to the United Nations. In addition, the UN has warned that the impact of conflicts in Africa's hot spots has also increased the number of people living with disabilities on the continent.

[…]Like Ghana, Uganda has also enacted a Persons with Disabilities Act which, among others, promotes the education and welfare of disabled people. But stigma remains high, said Robert Nkwangu, the executive secretary of the Uganda National Association of the Deaf, which does advocacy and policy influence for its member

[…]Many potential employers are often hesitant to hire people with disabilities. However, said [president of the Ghana Federation of Disability Organizations Yaw] Ofori-Debra, some employers who have encountered persons with disabilities know their potential.

"You cannot put the blame squarely on them because some have not had any experience with persons with disability," he explained. However, he said, "sometimes disabled people excel in areas where those with abilities cannot."

"I would say the first responsibility of the community is to embrace everybody, regardless of the challenges or impairments they are facing. And that's what we also have been doing in most of the communities we work in," he said.

Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!

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