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I’m a paid caregiver to my special needs son, which is something I recently started doing once he clocked 18. I also work with clients outside the home, but not every day, like I used to. It's like working 24 hours. Usually, caregivers don't have people caring for them, and that's the case with me. On a few days, I have other people come in to relieve me of caring for my child. But right now, it's like every support has been removed because his hours of care were reduced by insurance from 93 hours a week to 51 hours. Medicaid pays for part of his care, and that’s the 51 hours. That’s covered. That part is paid through an agency, not directly to the parent. So it means that, as a parent caregiver, I have to be employed by an agency working with my child, and I have to be paid by the agency as staff.

My son has very serious sensory issues. I help him hand over hand to guide him in taking his shower. For any place he doesn't catch, I show him and say, “Here, baby. Here, do this. Good job.” Praising him. I also help him put body lotion in his hand and hand over hand all over his body.

(She has posted photos throughout the house to help him learn to become more independent. On the walls in the upstairs bathroom, she’s posted a series of photos on how to take a shower and how to brush one’s teeth.)

Those are visual cues to remind him what to do. Other caregivers wouldn’t do that. Some of them pity him because it’s very tough for him to hold some things. He has fine motor problems. So they just do it for him. They see him like this child is suffering. But to me, even when I’m crying inside, I still have to show a strong face so that it could benefit him.

In the afternoons, we’re going to start a usual fight because he wants to watch TV, and I want to do body brushing so that I can calm him down before he gets into any other activities. I do therapy with him, like visual management therapy. Integrated listening therapy. Because he has a sensitivity to sound, I do sound therapy with him. Or what we call combination therapy or solution therapy. I do all that with him. I do some essential oil, which we always have all around the house, and some massaging. Then it’s night again, and I’m just trying to round everything up. I usually go to bed at 12 a.m. I don’t sleep. Sometimes I’m so tired I want to cry. I don't have leisure time. I'm trying to start having leisure time for myself now. Sometimes, I go to the Women’s Center for meditation on Wednesdays between 1 and 2 p.m.

But I like taking care of people. And I'm able to resign myself to the riches that are not quantitative. The riches of being there for others. The job itself, as a job, yeah, I can do that. I can really do it. It’s just that the income that comes with it is not going to be enough to save towards putting my youngest child in college, and that’s not good. The only control over my hours is—you don’t work, you don’t get paid. It means you lose your income.

There's nobody that can live on one income. For two parents with kids that have no special needs or no therapy, most of the time, they still have to work two jobs. And now, I am a single parent with a special needs child. There are therapies that are not covered by the insurance. Of course, in my own case, even having three or four or five jobs, I cannot still meet [the cost to pay for those therapies out of pocket.] And so I ended up going for training for those therapies. I carve out time to do them with him.

Right now, I’ve got five jobs. I have two care jobs, plus my son. Another overnight job on Saturday and Sunday. I’ll be interviewing tomorrow for a life share job here. I also have side hustles—like Amazon fulfillment. Shipping product for [a wellness] company. I pick up every empty water bottle I see. That brings in pennies. I make dresses. You can see my sewing machine there. [She points across the room.] That makes six jobs. I just pick every kind of little here, little there job that will make me present with the kids when they need me.

My son is non-verbal, but he's still able to say, ‘I'm busy.’ ‘I'm busy,’ meaning mom is busy. I didn't realize that every time he talked to me, I would say, ‘Mom is busy now.’ I didn't realize I was saying that often. Until he said, ‘Mom is busy now. I'm busy.’ So I must have been repeating it so much for a nonverbal autistic [child] to be able to pick that and repeat it back to me. So it was like a wake-up call.

All Care Work Is Work and Should Be Valued

But my first job is being a mom. And the other jobs are what sustains the job of being a mom because the job of being a mom is never paid for.

I usually like to define myself and my job as a mother first. Even before I met the Global Women's Strike and I became one of the volunteers, when [people] ask my occupation or job, I've always put mother. Not because I didn't have what they call a job, but because that is my number one job. That's the one I choose to be recognized with, and that's the one I want to be called.

Through the years, I've always had people [ask, ‘“What is] the job you do that's a real job?” And it's like, seriously? If I do not mother, if you do not mother, if we don't mother, how will all the other jobs be done? The first job is mothering. I believe that every mom is a working mom. My organization, Global Women's Strike, also says every mother is a working mom. So, we came to Washington, D.C. to emphasize this notion because it's the truth. Some lawmakers, like Congresswoman Gwen Moore and Congressman Dwight Evans, are already pushing a bill that defines what work is, and that work also includes the fact that mothers are working.

Breastfeeding is a job. Because if we are not breastfeeding a child, we have to buy formula. If you're buying the formula, it's some people who are making the formula, which is not as good as the breast milk, but there’s a whole company that's making that. That’s a job for some people to do. So even if you express your breast milk, or even if your baby is to be given a formula, and the mother is compelled to go out to work, the caregiver who will feed that baby the formula will be paid for doing that job. So it's a job. It’s only that it's not recognized when the job is being done by moms to their families. That's on the side of parents.

On the side of caregivers, I'm a certified nursing assistant. I work in people’s homes or nursing homes. But the fact is this—exactly what I do to be paid is the same thing I do at home for my special needs child. But, the funny part of it is that I'm asked to go get a job outside of my home because that's the only time it should be recognized that I'm working.

When I joined the Global Women’s Strike, I could see other women caring for children—and not earning much income—whose children were removed from them. With poverty as a reason. Other grandparents whose grandchildren were removed from them. Because of poverty. Why would poverty be a crime? It’s not a crime to be poor. But Child Protective Services puts poverty as neglect. Meaning if you are poor, that means you are neglecting. But poverty is not neglect. Poverty is poverty.

OTSD: Ongoing Traumatic Stress Disorder

I like that we're very close to the park. I like the neighborhood. I did a lot of searching. I wrote down what I wanted and eventually got it. The neighborhood is good. You still see people walking around in the night.

A lot of people, when they hear I moved to the Olney area, it's like it's a very dangerous area. But it’s just where the bus stops and the transit are that is that’s dangerous. That’s the place that is always having shootouts. That’s the place that is always in the news. But that is almost seven to ten blocks away from us. So this cul-de-sac, beside this park, where we are here, is a safe place. I wouldn’t let my kids roam or let my son go to the park all by himself. The world has become crazy. I’m always teaching my daughter how to fight free in case somebody grabs her.

My boy is huge, a 6’4, 200-pound boy. For those who are autistic and nonverbal like my son and unable to express themselves, sometimes he runs himself into the wall as his way of regulating himself. If I'm there when he's running himself into the wall, I know he needs to be massaged, or I try hugging him to decompress him.

Whenever he goes out, oftentimes he's just yelling. That's to get attention and for stimulation. He's a huge Black boy. Another danger is from the untrained police. That's my number one stress disorder. My number one stress disorder is not the [Child Protective Services] coming to take him away for any flimsy reason. It’s the police. The second one is CPS. It’s the government that should be helping me that I’m so scared of. They might take the life of my child. Or they might take my child away.

I don't sleep. Sometimes, I want to cry to decompress. I want to be able to go to a corner of my place and cry. But when you cry, you have swollen eyes. And when you have swollen eyes, it weakens your daughter.

Just this morning, I was overwhelmed because I got called by my son’s [Medicaid] insurance, and it's like, “Oh, we need this paper. You didn’t submit that paper.”

And they ask, “Are you going to break down? You better talk with your doctor.” I said I'm already broken in pieces. I've never been together. Take note of this: OTSD for parents with special needs children. Ongoing Traumatic Stress Disorder. And we don't get out of it until we die. And you don’t get help because it’s not recognized. When you’re at work, you’re thinking about what could be happening at home. Because of special needs, you get fired easily because you have to call off work most of the time. You fight in the school districts. You are asking and begging and fighting and crying and advocating and doing everything for them to give him 20 more minutes of [advanced behavioral education.] You are calling the insurance for speech therapy, and they're telling you that we are not sure that he doesn't speak. [She shakes her head.] I got a letter that said, “We know your son used to be, but we believe that he is no longer autistic.” It’s like saying, “We don’t believe you, you no longer have Down Syndrome.” We just fight and fight every day.

That’s why I call it OTSD. We are like moving zombies.

Pandemic Aid Was a Lifeline. When It Stopped, the Family Struggled

During the time of the lockdown, the COVID era, the Child Tax Credit was helpful. I was given food stamps, so we had enough to eat all the time. The money was able to help. I used to work with four people. I worked 76 hours every week before I came back home to do tailoring. But with the lockdown, I couldn’t be going to different people’s homes. It was not healthy and could be dangerous. So, I only went to one client.

What that meant was the money [the CTC] paid was a lot of relief. Just imagine, I lost all my hours. I call it the children’s money. I used it for Cecilia’s dance class. She also went to music classes. And I was able to get some things for the brother, too. Then, there was disaster coverage for the mortgage. I went 18 months without needing to pay the mortgage. They adjusted it. So, instead of 30 years, they moved it to 30 years and 18 months.

Then the stimulus check, wow! That’s what I used to start my business—part of it. I made a small amount. If I ship 20 [wellness] packages a week, I bring in $60. It was very tiny, but it was something.

Now, my daughter’s music and dance class has stopped. So, now I sit down with her to watch YouTube to learn to play the ukulele. That’s what we’re using now. I’m providing the house, the food, the bills, but all those other things that kids deserve to have, I’m no longer able to provide.

I still don’t understand why [the Child Tax Credit] only comes once in a year with my tax refund. The kids are not growing once in a year. They grow every day. because it’s the kids’ money. But when you give it to us at the end of the year, when there's a lot of debts to be covered and everything, sometimes it's like, “Heck, how do I manage these funds?”

The food stamps ended shortly after the pandemic. There were days I went hungry. I also decided to do a little garden in front of the house so I can plant some healthier organic veggies and not just be limited to canned foods. I still have tomatoes growing there now. I don’t usually have time to go to the food bank.

The kids have Medicaid. I don’t have free health insurance.

Dreams for the Future

My dream is to put my invention into practice. I studied civil engineering. I practiced as a civil engineer before I migrated to the U.S., which was 11 years ago. The first thing I did was patent my invention when I got here. That’s my plan. I also want to expand my side hustle to become a business, to become a great job. It has been the small business that put food here. I have been able to pay my mortgage for two months and put food on the table. I’ve not paid any other bills for two months now. No parent should be deciding between paying the mortgage, bills, or buying food. This is what poverty does. This is what I mean by earning nothing doing an important job [as a mother.] I decided to pay my mortgage and buy food for these children, so other bills will need to wait.

I don't want Cecilia to be so burdened the same way I am burdened. I don't want her to get out of being whosoever she wants to be—a psychologist right now. She wanted to be a vet some time ago. I don't want her to be a caregiver, receiving just a little amount of money. I want to see a future where she will be able to have a life. She’ll definitely go through college. That is a must. But I cannot say I have savings that she can dip into to go to college without running into student loans and being sort of imprisoned by the student debt. How do I hope to solve that problem? I don’t know yet. Maybe she’ll get a scholarship. I’m not getting younger. I’m getting weaker. I might not be able to do more work to help her. Right now, what I’m doing is not able to sustain all of us.

I also want her to relax that her brother’s in a good place.

For my son, I don't want him to be abused, abandoned, or not well taken care of. There was a time in the school when they told him he was just going to be condemned to home watching TV for the rest of his life. I said, “No, you don't know him. You should ask me what I think.” I want to see him being able to contribute—being able to hold a job and being able to earn some income from that.

For my daughter, I see her eyes light up whenever her brother is there. It's like, that's her ultimate. She likes drawing and making artwork along with her brother. They do that together.

For him, he doesn't even look for too much, provided he's in an environment where he's respected. He is very, very conscious that he has special needs. He knows that there is something in him that makes him different from everybody. If he's around people who do not respect him because of that, he doesn't like it. But if he's around people who just love him for being him, he wants to charm everybody.

For me, what makes me happy? Number one, helping other people makes me happy. Number two, having enough for my kids, and not being afraid of [not having enough for] any needs whatsoever. That’s what makes me happy.

She Wants Policymakers to Know That Poverty Is a Trap They’ve Created

Some people are not just choosing to be poor. The system makes some people poor. The way it is set up, it's like a trap. It's like a maze. You get out of debt in one place, and you turn and find yourself in debt in another place. So, I want policymakers to know that they've made bad laws. They’re like a noose, too tight on the neck of the people.

Most people are not asking for too much. If anybody is asking for too much, it's all the corporate rich folks who just want the whole world. Most people just want a means of livelihood, to not be put into some kind of stressful condition.

I would like to see an economy that considers people based on their abilities and contribution. An economy that is trying to increase the middle class, giving conscious efforts to help people climb up to that ladder.

Look at the economy we have right now. Everything increased in price except income. That’s why I call it a maze. Why not first increase the income?

Maybe I've been doing it all by myself because I didn't think there were people around me to help. Even when one does not really have physical health, you can allow your spirit to feed from the spirit, your soul to feed from the soul of the people around you.

And if you don't allow that, you will not only be suffering not having people to help you physically, you will also be suffering not having people to help you carry your burden. That’s what I got from going to that meditation. Those are the times I relaxed myself. You have all these women around you, all these grandmas around you. If they don’t even have anything to give you, I mean physically, you have the support. You feel you’re supported. The caseworker for my son makes me feel so relaxed. If I close my eyes for the last time, my prayer would be, I pray she would be there. There are some caseworkers that come and they just want to take your child away from you. There are some case workers that see you. Like my daughter says to me, “Mom, I see you.”

You know, my daughter came to me and said, “Atlas is depicted as a man holding up the world. But men aren’t holding up the world. Women are holding up the world. Atlas is my Mom. Atlas is my grandmother. They got it wrong, thinking Atlas is a guy.”