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Meet Soliz and Camila Magdelano (Audio Described)


Photo of Soliz (in profile in front of bookshelves) and photo of Camila (sitting in a chair and smiling)

Welcome to our second Families Matter video story! This one profiles the Magdelano family: Soliz (age eight); Camila (age seven); their parents, Heather Joy and André; and their dog, Sammy. Soliz and Camila have combined vision and hearing loss due to Wolf-Hirschhorn syndrome.

In the summer of 2015, the family took a road trip from their home in Arizona to California, where they went camping with extended family, including their Grandma Joleen and Aunt Amy. Join them in their adventure as they are immersed in sensory experiences and new environments, and find out how they communicate, learn, get around, and adjust to a variety of situations. In the box below each video are resources where you can learn more about some of the topics covered.




Meet Soliz and Camila

To learn more...

DESCRIBER: A title: "Meet Soliz and Camila."

HEATHER JOY: All right—this is Soliz and Camila. Soliz is seven, almost eight, and Camila Rose is six, and they’re born 21 months apart. They have Wolf-Hirschhorn syndrome. And we’re going camping.

[music]

DESCRIBER: A montage of video clips: In a van, Soliz and Camila sit in their wheelchairs. Soliz smiles. They pass bare hills and wind turbines. At the campsite, their dad puts up the tent. Soliz and Camila lie in the tent with a dog. Outside, they sit with their aunt. Their dad pulls them in a red wagon. Camila swings in a hammock. Soliz holds a large ball. Camila and her grandma lie in the tent with the dog. A shot of the beach and ocean. On the beach, Camila sits on a blanket, moving her feet in the sand. Heather Joy holds Soliz on her lap.

HEATHER JOY: We just love all the sensory experiences—the ocean air and the sound of the waves and going and sitting in the sand and putting our feet in the cold water and getting sandy on our feet and our hands…There’s so many things about being outdoors for four days that are amazing for the kids.

Communication

To learn more...

  • Interaction & Bonding
    From the Communication for Children with Deafblindness, or Visual and Multiple Impairments website, Texas School for the Blind and Visually Impaired.

  • Total Communication
    From Perkins School for the Blind.

DESCRIBER: A title: "Soliz and Camila: Communication." On the beach, Camila sits on a blanket, moving her feet in the sand.

NARRATOR: Providing children with real-life experiences in the natural environment is essential to communication development. For the Magdelano family, being outside in nature allows Soliz and Camila to attach meaning to concepts that can seem so abstract to a child who is deaf-blind. After all, there is no better way to teach a child about camping than to actually go camping!

DESCRIBER: At the campsite, Soliz and Camila sit in their wheelchairs.

HEATHER JOY: Can you believe this, Camila? How beautiful! You get to look up at the trees. Wow…There’s our tent. All set up for the night.

NARRATOR: The family and school use the total communication method with the children, which includes speech, sign language, and picture symbols. Though Soliz and Camila do not yet speak or sign, they can respond to yes/no questions—Soliz by touching one of the hands of his communication partner, and Camila by moving her head to one side or the other.

DESCRIBER: In the living room of the family’s house, Soliz and Camila’s aunt, Amy, shows us two binders filled with picture symbol cards. Many of the cards have tactile elements, for example, a small bell attached to the “music” card.

AMY: These are the books we’ve made; one for Soliz and one for Camila. And they’re a modified pod. There’s four categories—eat, drink, go, play. And within each category we’ve made cards. So here’s eat, and then you flip it open, and then there are your choices. So for each category that’s how it goes. Drink—flip open—choices. We still need to put a go sign there. Here are the go choices. And we need a play, and play choices.

DESCRIBER: Soliz and his mom sit facing each other. She points to the communication book.

HEATHER JOY: Do you want to go? Do you want to go? There’s a category “go.” Yes or no?

DESCRIBER: As she speaks, she signs yes with her right hand and no with her left. Soliz touches her right hand.

HEATHER JOY: Yes?

DESCRIBER: She removes the bathroom card from the book and holds it up. She signs as she speaks.

HEATHER JOY: Do you want to go potty? Yes or no? Potty? All right. See that? I’m going to ask you one more time, okay? Just to be sure. Do you want to go potty? Yes or no? Yes. Okay, we’re going to go potty.

NARRATOR: Soliz and Camila have predictable and consistent communication partners they can trust, who allow them “wait time” to process information that is coming in, assign meaning to it, and respond.

DESCRIBER: At an outdoor restaurant, Amy holds a juice box and a small bowl in front of Soliz, waiting for him to choose. Eventually he touches the juice box.

NARRATOR: The family honors multiple forms of communication from both children. Soliz and Camila use a combination of eye gaze, facial expression, body posturing, and touch to indicate their needs and interests. Underpinning all of their communication development is the feeling that they are safe and secure with their family.

DESCRIBER: At the campsite, Soliz sits in a wagon with his dog, Sammy, while his grandma sings to him using a monkey doll.

Literacy

To learn more...

  • Early Emergent Literacy
    From the Literacy for Children with Combined Vision and Hearing Loss website, National Center on Deaf-Blindness.

  • Visual Adaptations
    A fact sheet from California Deafblind Services. [Will automatically download.]

DESCRIBER: A title: "Soliz and Camila: Literacy." Soliz and Camila sit on the bed with their dad and aunt while their dad reads a picture book.

NARRATOR: Early and consistent exposure to literature is essential for all children--including those who are deaf-blind. Often parents wait to expose their child to books because of the child's limited sight and hearing--when, in fact, there is so much to be gained from reading together. Since Soliz and Camila were infants, reading has always been a consistent part of their daily routine.

ANDRÉ [reading]: “‘Well, that’s why I want help. I have nothing to give her.’ ‘Nothing to give your mother on her birthday?’ said Mr. Rabbit.”

DESCRIBER: Soliz and Camila sit with their dad at a little table, where a picture book is propped open on a stand.

NARRATOR: Reading time has not only promoted bonding but has also given both children the understanding of what a book is, that it contains pictures and words, that the pages turn, and that they can have a relationship with the book through listening and touching. This is the foundation for further literacy development.

ANDRÉ: Turn the page for me, please.

DESCRIBER: Soliz turns the page.

ANDRÉ [reading]: “G is for grapple truck and its grabby, massive claw.” Look at that—it’s grabbing a G.

Movement

To learn more...

DESCRIBER: A title: "Soliz and Camila: Movement." Soliz and Camila’s dad, André, pulls them in a wagon along a grassy trail.

NARRATOR: One of the symptoms of Wolf-Hirschhorn syndrome is poor muscle tone, but this doesn't stop Soliz and Camila from being on the move in many different environments. They have a variety of ways of experiencing the world--wheelchairs, walkers, a wagon, and support from adults. Sol has learned to walk with a walker. Using the walker is part of his daily routine, like walking to the school bus.

DESCRIBER: Soliz, in leg braces, uses his walker to cross the front yard to the school bus. André accompanies him, with one hand on the walker.

NARRATOR: He has also reached a point where he can stand on his own.

DESCRIBER: In the kitchen, André sits at the table with Camila, who is in a high chair. Soliz stands next to them, one hand on the high chair and the other on his father’s arm. At a gym, Camila stands in her walker with her mom, Heather Joy, bending over her. Her aunt speaks offscreen.

AMY: Go Camila! Woo-oo-oo-oo! Go Camila! There’s Sammy. He’s going to help you.

HEATHER JOY: Good!

NARRATOR: Camila, who is younger, is also learning to use a walker, but still uses a wheelchair a bit more often than Sol.

DESCRIBER: Camila takes slow steps with the walker.

HEATHER JOY: Yeah!

NARRATOR: Aunt Amy is using touch cues to help Camila take some steps towards her wheelchair.

AMY: This one…Okay, one, two, three.

DESCRIBER: Amy lifts Camila into her wheelchair.

NARRATOR: Sometimes, instead of using a walker, Sol walks with his parents’ support. This is especially helpful in small spaces or where the ground is uneven.

DESCRIBER: Heather Joy walks with Soliz—in a yard, and then at a rest stop. In the kitchen, Camila sits on a board that rests on several springs.

NARRATOR: Movement isn't just about getting from one place to another. It’s also about balance and experiencing the sensation of motion.

DESCRIBER: Soliz swings on a swing which is suspended from the ceiling. Outdoors, Camila swings in a hammock.

NARRATOR: Both children participate in horse therapy, and both love to swim.

DESCRIBER: In a pool, Camila floats on her back while her grandma supports her.

Transition

To learn more...

DESCRIBER: A title: "Soliz and Camila: Transition."

NARRATOR: On their trip from Phoenix to Malibu, Soliz and Camila went through many transitions--in and out of the van, stopping at rest stops, getting settled at campsites, staying at other people's homes. Their environment was constantly changing, which can be a challenge for children with deaf-blindness.

DESCRIBER: At a rest stop, Camila and her dad, André, sit at a picnic table. Then, at the campsite, André wheels Camila out of the van.

NARRATOR: The Magdelano family travels often. They take their adapted van instead of flying because it makes it easier to transport the equipment and supplies the children need. Heather Joy and André prepare the kids by using routines and letting them know what is going to happen. For example, when they left for this trip, they got Soliz and Camila up very early, showed them that the van was full of stuff, and talked about going to Grandma's house. And with every transition along the way, they explained in advance what would happen next.

HEATHER JOY: This is where we’re going to camp tonight, Camila.

NARRATOR: Heather Joy and André pay attention to how Soliz and Camila are responding to new experiences and give them breaks if they are becoming overwhelmed.

DESCRIBER: Camila sits with her head down and eyes closed. André picks her up and carries her off.

NARRATOR: Also, because they know their children so well, they’re able to adapt their plans to work around situations that are likely to be stressful.

HEATHER JOY: Okay, we’re stopped off for lunch. It’s raining outside; we’re at In-N-Out Burger; it’s too loud inside, because, well, loud spaces for our kids are really challenging. So usually we would sit outside on the benches, but it’s raining, so we’re trying to figure out what to do. We may just hit the road or feed the kids in the car. So.

NARRATOR: The trusting relationship Soliz and Camila have with their parents provides a consistent sense of security wherever they go.

DESCRIBER: The family rides in the van.

Empowerment

To learn more...

DESCRIBER: A title: "Soliz and Camila: Empowerment."

NARRATOR: Children with Wolf-Hirschhorn syndrome often have difficulties eating. Soliz and Camila get most of their nutrition through tube feedings.

DESCRIBER: At a picnic table on the beach, Camila’s dad holds her in his lap and feeds her through a G-tube.

NARRATOR: Heather Joy and André were told that Soliz and Camila would never be able to eat by mouth. Instead of accepting this opinion, however, they enrolled the children in a feeding clinic.

DESCRIBER: A therapist works with Soliz on eating. While his aunt supports the back of his head, the therapist feeds him a piece of celery with dip and he crunches down.

THERAPIST: Ready?

AMY: Just hold it?

THERAPIST: Here we go. Yep. Great crunching! Look at that! Wow.

NARRATOR: Now, with the support of their parents, other family members, and therapists, Soliz and Camila are developing the ability to eat.

DESCRIBER: Soliz’s grandma feeds him with a spoon.

JOLEEN: Salmon, a beautifully poached egg, capers, a little hollandaise sauce, and an English muffin.

NARRATOR: The family's ultimate goal is to get the children off tube feedings entirely, but in the meantime, eating provides an important sensory and social experience.

DESCRIBER: André feeds Camila with a spoon.

Teaming

To learn more...

DESCRIBER: A title: "Soliz and Camila: Teaming." At the campsite, the family sits around a picnic table playing cards.

NARRATOR: Since children who are deaf-blind need a great deal of support to learn, grow, and fully experience their environments, it’s vital that they are surrounded by cohesive teams made up of family members, school personnel, and other service providers.

DESCRIBER: In a bedroom, Soliz and his habilitation provider lie on the floor while she reads to him from a picture book.

NARRATOR: As a result of Heather Joy and André’s ongoing advocacy efforts, Soliz and Camila both have strong school teams that include interveners. Their habilitation providers, Patty and Nikki, work with them at home. Patty has been with the children for three years. In addition, their whole family works as a natural team—their mom and dad, extended relatives like their grandmother and aunt Amy, and even their dog, Sammy. Each has a unique relationship with Soliz and Camila that has evolved over time and a willingness to include them in every aspect of family life.

DESCRIBER: At Whole Foods Market, Soliz and Camila are pushed in carts by their dad and Amy. Then, at an outdoor restaurant, they sit at a table with Amy and Grandma Joleen.

NARRATOR: The camping trip to Malibu included the entire family.

JOLEEN: Oh, it’s been great camping with the Magdelano family and Amy and Anuar, and the Mejia family—Magdelano and Mejia. I think the highlight is having the kids sit up to the table and eat with us, and eating better, because we’re out in this lovely environment. The waves, and, let’s see, learning how to make it work for our family.

NARRATOR: Afterwards, Amy returned with the family to Phoenix and spent two weeks with Soliz and Camila.

DESCRIBER: Amy uses picture symbols with Camila.

NARRATOR: Together, the family provides opportunities for learning, fun, and many close connections.

DESCRIBER: Soliz and his dad swing in a hammock. At the campsite, Grandma Joleen holds Camila on her lap with Soliz nearby. Camila sits on a bed with Sammy. He licks her, and she touches his ear.

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