An Interview with Melissa Acala, a Navajo/Latinx Mother who Advocated for Aqua Therapy for her Son
Melissa Acala is a Navajo/Latinx mother, wife, teacher, and fierce advocate for her son, Gavin Acala. I learned about Melissa Acala by attending her online presentation titled An Indigenous Lens to Different Abilities, presented through the Eastern Los Angeles Family Resource Center.
Gavin has Pallister-Killian Syndrome, a disorder that causes weak muscle tone and various complications. Although Gavin is non-speaking, his love for water is clear (I mean, do you see how happy he looks in the photo to the far right??). After hearing Gavin’s story, I knew I wanted to interviewed Melissa and learn more about her son for the Growing Food in This Body Project. Initially, this project was an attempt to document disabled and neurodiverse farmers and gardener’s relationship to the land. However, the moment I heard Melissa talk about her son’s relationship to water, I realized this project needed to include disabled and neurodiverse non-farmers/gardens as well.
Given the physical differences associated with Pallister-Killian Syndrome, ongoing physical activity and stimulation is critical for maintaining optimal health and well-being. So, when Melissa learned about aqua therapy and its benefits, she knew Gavin needed to start taking those classes.
Aqua therapy or aquatic therapy is a therapeutic approach, often done in a pool, aimed to help people with various physical conditions. Being in the water can help to improve muscle strength, balance, and joint flexibility. Plus, being in the water is motivating, which encourages physical engagement that might not be seen otherwise. These benefits often occur much quicker than they would on land, making aqua therapy an extremely important service for Gavin and other disabled folx. Accessing aqua therapy services isn’t always easy and disproportionately impacts BIPOC and lower income folx. Initially Melissa struggled to get her son access to these services. She unpacks all of this and more in our interview below.
Melissa Acala sits behind her son, Gavin. Melissa is sitting in a blue chair in a pool and Gavin is sitting in the water by her feet. Melissa is smiling and looking down at her son while Gavin is looking down at the water.
Gavin is in the water with a blue head float around his neck. He is wearing a long sleeve green swim top, a blue cap, and is smiling at the camera.
Can you tell us who you are and a bit about your son?
My name is Melissa Acala. I am an enrolled member of the Navajo Nation. I also identify as Latinx. Born and raised on Tongva land in northeast LA in Lincoln Heights. I’m a full-time high school teacher, I teach English. This year I’m teaching 9th grade. I’m actually teaching a reading intervention course. I’m also a mother of two children. Mariel Nizhoni Alcala, she’s six years old, and Gavin Bryant Alcala, he’s three years old.
I’m also the co-founder of (name of organization), which is a non-profit, and it’s to kind of bring equity and access and advocacy to the urban native community in LA. So, I wear many hats, but I do feel that being the mom of Gavin has really shifted, not my path, but just my better understanding of ableism and access, so I kind of feel like that's kind of been my theme right now. Researching, understanding, even my son, he has Pallister-Killian Syndrome, where the 12th chromosome duplicates itself for unknown reasons. They don't know why it happens. There’s no cure for it and because of it, he has a lot of other medical complexities. So, he has epilepsy, he has chronic lung disease, he’s g-tube fed, primarily. He’s non-ambulatory, and he has partial blindness, he has a cortical vision impairment. He has many different abilities, and so at the same time of learning how to access the system and how to get the best resources for him, I’m also still learning about his syndrome and how to best serve him, and how to help his needs.
Can you talk about your son’s relationship to water and how that relationship happened?
When Gavin got his official diagnosis at one, we started going through all the steps of what type of support or services he needs. We started occupational therapy, physical therapy, feeding therapy, you name it. But I felt like he needed more. There was something missing that I felt he needed more support in. I started to do research. I started to reach out to the parents, like the older parents of kids who have PKS. And we have this private Facebook group that only parents of PKS kids are allowed to join and they're all over the world. Argentina, Mexico, I mean you name it, we’re all over the place, and we just share stories and we give each other advice. And so I reached out to them and I said, “Hey, you know, I’m starting the process of getting support and services, what else am I missing?” and they all flooded my comments saying “aqua therapy”, “our kids thrive in water”, “you need to put him in water.” I was like okay. So. I started to look into it. My sister lives, maybe, an hour away and she has a pool. And because he’s g-tube fed, I’ve always been kind of hesitant to submerge him underwater. But I was like well if they say they love water, let's try it.
So we went to her house and, oh my god, his face lit up! He was kicking his legs and his arms! And my son, at one, was very hypo-sensitive. Like, many people are used to hyper-sensitivity, like having to calm kids down, but with Gavin, it was hard to stimulate him. So when I found him kicking and actually expressing joy in the water, I was like okay this is the route we need to go.
I had a friend who has a son with Cerebral Palsy and I told him about Gavin and he said to check out Pasadena’s Aqua Therapy, which is maybe a 15-minute drive away. So, I went and I checked in with them and their facility was amazing. It was private and it was so beautiful because they had seniors and children together in the water working on therapy. And so I knew in that moment that that’s what we had to do for Gavin. That was kind of like the beginning of our journey, and now Gavin is going on two years of receiving aqua therapy. It first started off every other week for only 30 minutes because we couldn’t financially afford it. But, with a lot of advocacy and a lot of push, I was finally able to get the regional center to pay for it. So, about six months after advocating why Gavin needed this resource, he now goes every Friday for one hour and since then he has thrived so much.
What is it like when Gavin goes to these aqua therapy sessions?
One thing about Gavin is that because his sensory processing is so delayed, it literally would take some time, like five minutes, for him to express anything. I’ve tried many different toys and textures, but as soon as his foot touches the water, he smiles. So there's an immediate reaction of joy, and to me, that in itself is a success because it’s always a struggle trying to find ways to get him excited and for him to express that. He touches the water with his toes and his face lights up. The aqua therapist does warm-up exercises with him. There’s steps that lead into the water, so she’ll have him sit on one step and practice kicking his legs to build the muscle, and then he’ll go onto the next step, and it’s like a very slow and gradual process that she leads him into the water. And then in the water, they do different activities. One thing that he works on is building enough muscle in his neck to hold his head up. So she does this thing where she puts her head to his head and then they like swim together across the water so he can help his head come up. He loves bouncing in water, like the buoyancy of it. He just laughs and smiles. She’ll do things with her legs to lift him, to just strengthen the different muscles in his body like his arms, his legs, his torso, working on his posture in the water. All of these things are so much easier for him than they would be if he was doing them on land.
It seems as if when he is in aqua therapy, you’re not in the water with him, correct?
That’s correct. So, he and the therapist are in the water together and we’re outside observing. However, recently with COVID restrictions, we had to go through all these loopholes. They had shut down the aquatic center, but the therapist was like, “no we can’t take this away from our kids who need it.” So we got permission from the doctor saying that this is medical and needed, and now either me, the caregiver that helps us, or my husband will go with him. We are the ones working with him in the water while the aqua therapist instructs us what to do.
How has your relationship or dynamic changed going from now seeing him with the therapist in the water to you being in the water with him?
Two things. I definitely feel a sense of increased connection to my son. It has always been hard, you know, to connect with Gavin. I’m always trying to find ways because he’s non-verbal and he can’t do “typical” things a normal 3-year-old can do. I find that physical touch is the best way to connect with him. Hugs, squeezes, even like massaging his legs. Physical touch has been like my way to really connect with him. I’ve found that through aqua therapy in the water with him, it’s like a different physical touch of connecting with him, and then to see him light up and be happy brings me joy as a mom. So, it’s been really nice.
But on the second part of that, aqua therapy is a workout, let me tell you! Oh my god, I am so sore after. I told the therapist like from the outside perspective it looked really simple. Like, oh, they do all these cute activities…oh, no! It requires so much strength and muscle and I’m so sore after. It’s kind of a double win because for me it’s kind of like a workout and it feels good after. But don’t underestimate an aqua therapist because I could not believe how much strength it takes to work in the water.
Do you think you, yourself, being in the water has affected you in any way? Is it something you look forward to? Do you feel the same excitement your son feels when you’re like splashing around? How is that?
As a child, I loved the water. I was on the swim team, I played water polo. My mom would literally drop us off at the beginning of the pool time and pick us up at the end of the pool time. It was like free daycare for her. I have a lot of really great childhood memories of the water. And I feel like as I’ve gotten older, obviously, you know, it goes away, I don’t have that connection. I don’t go swimming for fun anymore. Every time I go in the water with him, it reconnects me to my childhood. It reminds me of the days when I was a child and I feel more connected to my son.
Have you explored taking Gavin to the beach or a natural water source? If, how is that different than taking him to a pool?
Absolutely. So, as soon as we started aqua therapy and started seeing the benefits and just the joy that it brings him, we definitely tried to incorporate water into everything. Something as simple as using water beads. Water beads are his favorite sensory activity to engage in and we keep them in the house just so he can touch water in the house. We go to the beach and he loves the feel of the sand.. And for me being Native, and how I was raised, my grandma always told me the beach is the best place to be to heal.
More recently, Gavin has learned to “butt-crawl” now. Like he can move with his bottom. And so that’s our first milestone of mobility! He can move around the house. So now Gavin butt-crawls to the bathroom and he hits the bathtub to tell us know he wants to go in the bath. He can’t communicate verbally, but this is one of the few things he can communicate. He can tell me he wants water. That has brought me so much joy because trying to get him to communicate has been hard. We let him sit in the living room and then he moves around the house and goes in the bathroom and just hits the tub like “I want water!”, and we’re like okay we’ll put you in the bath.
It seems as if even with COVID and other restrictions you have found ways to help him engage with water!
Yeah, 100%. In the middle of a pandemic we moved because of restrictions. We lived in a two-story apartment when all of Gavin’s services halted because of the pandemic. We didn’t have a yard and t was horrible, to say the least. We had to go up and down the stairs with him because he is non-ambulatory. I almost had a breakdown. I told my husband, “I don’t think COVID is going away soon, we need to move.” And I recognize that is a privilege. We had an opportunity, we had financially saved money to move to a home with a small little yard and it helped our family in so many ways.
A lot of my students who live in the heart of the city, they’re struggling living in an apartment and having access to nature. I sympathize with them because I know what that is like. In our homes in LA, we have bars on our windows, it is restricted to the max. So I feel like moving to this home really allowed us to have access to just the small backyard that I have. I have a little pool. I always fill it with water so we can splash outside. There is dirt and grass he can play with it. I can't even imagine how hard it is for families living in apartments right now, who are restricted like we were, being in an apartment with no access to the outdoors. It was really, really hard on all of us.
Now that you know what is important to Gavin, what is next for you and him?
I feel like this is kind of the beginning of my voice. I feel like the first year of Gavin’s diagnosis was really hard. I was experiencing grief. I was trying to process and learn. I feel like now I’m at this stage where I feel strong and in my power and my voice is becoming louder. I know right now we’re specifically talking about access to water but I can go on and on about all the inequities, all the microaggressions, and all the negative experiences I’ve had navigating the system. The medical system, the healthcare system, and the injustices of how our people of color, our Indigenous Peoples, specifically, don’t have access to the things they need.
I also recognize my privilege, for living in a predominantly Latino community, many don’t speak fluent English. I recognize the fact that I speak English and I’m educated. I have these privileges I can use to help others. I didn't realize that until more recently and I’m realizing that with my voice, I'm starting to kind of make noise in places and I’m letting people know that this is not okay. And, you know, going back to the story with the aquatic center, they initially would not pay for it and that really upset me. Pasadena city is 15 minutes away from Lincoln Heights, but they are predominantly white in an affluent community with money. Only people with money were having access to aqua therapy and that didn’t sit right with me. Even going back to eating. I looked into a better type of formula for my son’s g-tube feeding because I was finding that organic formula was healthier. They tried to deny me organic formula. They tried to say it didn’t exist because they thought my insurance wouldn’t cover it because it’s more expensive. These are just many examples of inequities I've come across to having healthier and more natural ways to heal and live. Only those with money can have access to that right now, and I'm not okay with that.
My voice is stronger and I feel grateful for people like you who are doing this work and shedding light on it and who care about this topic. Many times I forget there are other people in this world who care about these things like I do, you know? I’m the mother of my son, this is my job, this is my livelihood, this is my life. So when I hear people say, “can we interview you?” or “can we talk about this?’, it makes me excited, it makes me feel not so alone in this world because I forget there are other people who care to hear and talk about this, too, with me. Hopefully, I’m gonna be able to connect with people like you who care, who want to shed light on this topic, who want to provide access to our community, so that my son and others, not just Gavin, can continue to thrive and enjoy life like he deserves.
Melissa is the Project Director for So’oh-Shinálí Sister Project (SSSP). SSSP is a non-profit organization that promotes Indigenous education and wellness. You can click here to check out their website and here to follow them on instagram.
Gavin is sitting in pool water and looking at the camera. His mouth is open and appears to be smiling. He has his right hand raised. He is wearing a spider man swim vest and blue swim clothes underneath.