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Meet Soliz and Camila Magdelano


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...

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]

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.

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!

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.

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.

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

JOLEEN [singing]: …S-O-P-H-I-E, and Sophie was her name-o!

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.]

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]: “‘What are you going to give her?’ ‘That’s just it,’ said the little girl. ‘That’s why I want help. I have nothing to give her.’”

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 [reading]: “F is for fuel truck with a meter, pump, and hose.” Turn the page for me, please. “G is for grapple truck and its grabby, massive claw.” Look at that—it’s grabbing a G.

Movement

To learn more...

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

ANDRÉ: It takes a lot of concentration, huh?

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.

AMY: There! Woo-oo! Woo!

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

AMY: This one…Okay, one, two, three.

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. Movement isn't just about getting from one place to another. It’s also about balance and experiencing the sensation of motion. Both children participate in horse therapy, and both love to swim.

Transition

To learn more...

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.

HEATHER JOY: Tube feeding on the road.

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. 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.

Empowerment

To learn more...

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

THERAPIST: Here we go. Look—we’re crunchy. Amy, I’m going to have you just give like a little bit of like touch like this to the back of his head.

AMY: Oh, okay.

THERAPIST: Thank you. 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.

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.

Teaming

To learn more...

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. 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.

AMY: This is cool, huh?

JOLEEN: Neptune’s Nest.

AMY: Yeah! We made it!

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

JOLEEN: Is your tooth going to grow in? It looks like it’s going to. Oh, baby [kissing Camila].

This is a test.

NCDB : The Research Institute : Western Oregon University : 345 N. Monmouth Ave. : Monmouth, OR 97361
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