“They don’t care that you have a disabled child and you have to stay home all day. They don’t care. If you don’t have an income, you don’t matter.” — Cyndy Campobasso-LeDoux
Today’s issue is part of our occasional series called In Her Words. I interview mothers of disabled children and lightly edit their word-for-word answers into an essay. Go back to read previous episodes, Lorri, Jennifer, and Shannon.
Cyndy and I know each other from an award-winning story I did on her daughter’s controversial growth attenuation. She reached out to me because she wanted her story to be heard as Oregon lawmakers decide whether or not to extend a pandemic-era program that allowed parents to apply for the job of being their child’s Medicaid-funded in-home support.
I have a pretty big story. I’m also living the story, which is really busy.
I’m kind of stuck in this little place of knowing that sharing my story might help a lot of people — but at the same time it’s really scary for me because I’ve been on my own as a single mom.
Since I was 17, I’ve been a single mom. And I’m not a victim anymore. And that’s been a really hard thing for me to internalize. I was literally trained for years by the system to be as much of a victim as possible, so that I could survive. So that I could be given the things that I needed to survive.
In our heart, we want to put down (on forms and applications) how amazing our kids are. But in our heads, we know that we have to put down how bad they are. So it’s been training me, for it being really hard for me to be able to say: “I’m doing good.”
I think that a lot of people on disability, on services, they also get stuff that way. The more of a victim you are, the better off you can be.
I grew up kind of in a dysfunctional way. I was raised by my dad and step-mom after getting away from an abusive mother. I left home at 17, didn’t graduate high school. I became an underage dancer and moved to Hawaii. In Hawaii is where I got pregnant with my daughter, Layla. I came back for a few months and then found out I was pregnant.
That was the end of my childhood, basically, in a nutshell.
I continued being with guys who were not very good for me. I did continue to be a dancer through those years, even while pregnant. All the way up until I got pregnant with Blue. That was the end of all of it.
I was definitely not expecting to have a child that was as medically complex as her. But it—it saved my life. And that’s a weird thing to say but she completely changed my whole life.
I went on all kinds of services, like a housing program. I was in an abusive relationship. I was able to get into a specialty housing program and I’ve rented that home ever since.
I have become a master of the system. From day one, Blue had everything she could possibly ever need. There wasn’t a time where I didn’t fight to get everything she ever needed.
I pretty much spent the next 15 years mastering the system and becoming the best victim I could possibly be to make sure that me and my kids were always taken care of.
Obviously, there were a few years where I thought things were going to be different. I got pregnant with Kaysen but that fell apart pretty quickly.
I’ve never had anything on my own. Pretty much, on paper, I didn’t exist except for the small amounts of debt I had accrued over the years. Then, all the sudden, this opportunity came up for us to start collecting income. (During the COVID-19 public health emergency, Oregon allowed parent-caregivers to be paid for providing in-home supports to their minor children.) I did that immediately and in the time period that I had that, I’ve managed to completely pay off all my debt. I raised my credit score to 736.
Now I have gone through completing all the steps for an IDA program—a loan program through the government. (Oregon’s Individual Development Account.) You complete all these classes and pass a test and get into this program and then they match you. Whatever I put into the account, they match it five times.
I went into the program for buying a home. I completed all the classes: owning your own home, finances, investments. Basically, it goes for two to three years. I put $1,000 in the account—they’ll match up to $5,000 so that’s $6,000. At the end of two years, that money is the down payment for a house.
I’m off benefits for the first time in 22 years. I’m not getting any state benefits (like food stamps). And I’m able to contribute to the world. I filed my taxes for the first time.
When it comes to the big picture—I realized I was completely reliant on government funding to become a person who is able to be self-sufficient. It’s a really, really hard hump to get over, but I’m like three-quarters of the way over. And when that income gets taken away (the Oregon program paying parent-caregivers is currently set to end July 15), I’m going to keep fighting.
But I just, I think somebody should hear how much somebody could accomplish, to be able to have that for themselves.
My work for Blue was just always expected. It wasn’t something that I ever thought that I could be compensated for. It made it so I was unable to go to work. It makes everything harder. It’s 24 hours a day, seven days a week. Of course, after years and years, I got used to it. But it just left me in a place where there wasn’t very many options. I also had to make as little money as I could so that Blue could have the benefits she needed.
Being able to be compensated for what I do for her, it gives you a sense of respect. It means you feel like an actual human being. A member of society. That what you do every day matters to the community. It makes me feel like I’m a real person and not just, like, a burden.
She’s doing really good. Oddly enough between COVID and us being in this situation and me getting paid, she’s healthier now than she’s ever been in her life. We don’t go to the hospital. We don’t go to the doctor. She’s done exceptionally well since all of this started.
I think there’s definitely something to say about not having to rely on having help. We have one caregiver right now. Before she started, we never had a solid person. We had a few people who would sign up and do it for a week or two, or a month, and they would always quit. At least half the people who said they wanted to do it, they would literally find other jobs while they were signing up.
We never had consistent help anyways.
When COVID started, even the one person that we had stopped coming. She’s back to coming during the weekdays now and it’s literally a lifesaver.
Me being compensated for taking care of Blue, if I can do it as a single mom then literally every single parent of a kid with disabilities would be able to do it. It could advance their lives. They could give back and own their own homes and do the things that are normally not done in our community.
Honestly, poverty is the umbrella over disability and mental illness and all those things. But I think that the key factor is that if you’re good at being low income and you’re good at being in poverty, you get the most. When it comes to disability, it was always just thought of like that. If you were poor, you had the best chance. Being poor was almost like the best choice. Being in middle income, a lot of the people don’t qualify for anything. The people who were just starting to get out of poverty, those are the people who struggled the most.
Disability is almost a guaranteed poverty. They definitely go hand-in-hand. Even adults with disabilities, it’s almost better for them to stay poor because then they can get services. What most people don’t realize is that living in poverty, they don’t allow enough to live. They don’t allot them enough. I was never at a point that I didn’t have to do something on the side. What they expected me to live off of was not enough to live off of.
One time I talked to a program to help come up with a financial plan—they help you break down your money. My income that I had coming in, even with government assistance, they said it wasn’t enough. That’s it. They said it just wasn’t enough.
I was like: ‘OK….’
I literally went home and started figuring out how to do it anyway. I’m honestly going to do whatever it takes for my kids.
I’m still figuring out who I am. But I think I’m somebody who has come so far that I’m definitely not going to give up at this point. I’m still going to fight. I’m somebody who wants to help other people do the same thing and give other people hope.
I’m turning my life around and being the best mother. That mother is trying to buy her own home in two years and that’s something that before this income was never on the table.
There’s still the energy of, like, people try to make me feel bad about the fact that I was on state housing, as if that just is handed to you for free. Blue’s dad use to say stuff like that. Like I don’t have to work. But he won’t watch her. He won’t have anything to do with her.
But he use to complain about how I get SSI [social security payments] for her. He never understood how many times I had to sit in offices for entire days. And phone calls, and emails, and all the things I have to do to maintain that.
Now that I’m doing well, it’s hard for me to say it out loud to people. Like again: People are going to say that I don’t deserve it. Or that I’m getting something for nothing. That negative energy, I can feel it. It makes me scared to let people know that I do have income. But I feel like it should be heard, and it should be known that this money could change all of our lives.
I don’t see how they could think it would negatively affect parents to get paid. It’s what we’re already doing. For parents to be able to feel that what they do matters—that that role is actually acknowledged—is a huge deal for me.
I do try to make it look real easy because I don’t like to look stressed out. I don’t want anyone to ever doubt that I can take care of Blue. I’m like: “Everything’s fine, I have everything under control.” But that does give that sense to other people that it’s not that hard. Like: I know I make it look super good, but I work hard at that as well. So it’s like a double job.
Especially with my background, I was always afraid that any doctor or anyone would doubt for any second that I could handle her and her stuff. From the time she was in the hospital, I never would leave or take a break or anything. I always have gone over the top and worked extra hard for her from the moment that she started with this medical stuff.
Luckily, I have a pretty good track record. I’ve been calling her diagnosis for years before we got it. (Blue has a rare genetic condition known as CDKL5 Deficiency Disorder, which causes seizures and a number of other medical conditions.) I’ve definitely gotten to the point where I am more confident. It was something that I worked very, very hard at for a long time.
I want people to learn from my experience. Like: “Yeah, she can do this with her life? Rewrite her whole story? Single mom? Over 40? With a disabled kid? I could do that too.” Then I worry that people will read my story and be like: “Oh, she’s just getting more free shit.”
You’d think, 15 years in, people would kinda get it that this is actually what I go through. I’ve got Blue on top of everything else: medical, schooling. My 9-year-old has behavior issues, his therapy schedule’s full, too.
That’s what I really liked about this IDA program, it helps figure out how to get people over that hump, that victim mentality. I’m coming to that realization. The government literally trains you to be that. Sometimes, even if you get money, you want to hide it. You want to not let anyone know you have it because you’re going to lose everything else.
I want to tell people: You can be just as good at being a badass as you have at being a victim. People who—if they take those same skills and put them over into doing other things, then there’s a huge reward. But it also takes the right kind of program. If it hadn’t been for this income, I wouldn’t have even qualified for IDA. Even though I got rid of all my debt, and even if I had a credit score of 800—you’re nothing. Without income, you’re not even a real human on paper. They don’t care that you have a disabled child and you have to stay home all day.
They don’t care. If you don’t have an income, you don’t matter.
Even though I’ve come this far and I have achieved so much in a short amount of time, it’s going to make it very difficult. If they take this away, it’s right back to nothing. Right back to being a victim.
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From the University of California: “‘Minimally speaking autistic’ student wins Soros fellowship for Ph.D.”
For [Hari] Srinivasan, who is minoring in disability studies, the fellowship is one of many firsts that defy all those who told him that college, much less a doctoral program, was beyond his capabilities.
“All over the U.S., there are but a handful of autistics with communication challenges like me in higher ed, let alone at a top university like Cal,” he wrote in an email interview. “My challenges are so significant that I even don’t have the option of choosing to not disclose my disability. It’s just too obvious.”
“This is a community where everyone knows everyone. The number who made it to college before me I can count on the fingers of one hand,” he added. “So, when I say I’m a first, especially in a Ph.D. program, that is literally true.”
A native of Cupertino, California, and the child of immigrants from India, Srinivasan was diagnosed with autism and ADHD at age 3. Through unwavering parental support, sheer smarts and determination, he has beat the odds every step of the way.
Growing numbers of extremely premature infants are getting lifesaving treatment and surviving. A pivotal study in the Journal of the American Medical Association this year, which looked at nearly 11,000 such births in a neonatal research network that is part of the National Institutes of Health, found that 30% of babies born at 22 weeks, 56% born at 23 weeks and 71% born at 24 weeks lived at least until they were healthy enough to be sent home home if doctors tried to save them.
Those gains happened gradually and quietly as the notion of viability got a lot more attention in the abortion arena. Viability is mentioned 36 times in the initial draft of the leaked majority opinion by the U.S. Supreme Court in a Mississippi case that would strike down Roe v. Wade. The decades-old abortion ruling says the Constitution protects a woman’s right to an abortion before viability, a standard Mississippi argues is arbitrary.
But viability has nothing to do with the vast majority of abortions; more than 99% of abortions occur at or before 21 weeks, according to federal statistics. So although viability is central to abortion law, the crux of the argument around the procedure comes down to disagreement about whether and in which cases someone should have the choice to terminate a pregnancy.
Meanwhile, viability is a growing real concern for those who care for premature babies as science keeps moving the line lower and lower.
And in this realm, too, it’s ethically fraught.
Beyond the risk of death, babies at “borderline viability” are highly susceptible to disabilities such as cerebral palsy, cognitive impairments, blindness and severe lung problems. Often, parents and doctors face a heartbreaking question they must answer together: How do they decide what to do?
“There’s a lot of things we can do, a lot of interventions,” said Dr. Barbara Warner, a newborn medicine expert at Washington University medical school in St. Louis. “Should we do them?”
• From The Morning: The baby formula shortage highlights four larger problems with the U.S. economy.
As my colleague Amanda Morris, who has been reporting on the shortage, says: “Most of the parents I spoke with around the country who were feeling the impact of this the hardest were ones that either had limited resources or time, or ones whose babies had allergies or disabilities that severely limited their choices.”
[…]The U.S. has long put a higher priority on taking care of the elderly than taking care of young families.
Americans over 65 receive universal health insurance (Medicare), and most receive a regular government check (Social Security). Many children, by contrast, live in poverty. Relative to other affluent countries, the U.S. spends a notably small share of its budget on children; President Biden’s stalled Build Back Better plan aimed to change this, Urban Institute researchers have pointed out.
Alyssa Rosenberg, a Washington Post columnist, argues that the formula shortage is part of this story. “Babies and their well-being have never been much of a priority in the United States,” Rosenberg wrote this week. “But an alarming shortage of infant formula — and the lack of a national mobilization to keep babies fed — provides a new measure of how deeply that indifference runs.”
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