Spotlight Story -

Adam Palau

by Jordyn Rodriguez

Everything was going smoothly during my pregnancy with Adam until routine ultrasound results revealed unexpected complications, including IUGR. I was told to go to the hospital immediately or Adam might not survive in utero. He was born via emergency surgery at 27 weeks, but because of the growth restriction, he was the size of a 23-week-old, weighing only 1 lb 4 oz.

Just a couple of weeks after birth, Adam became very sick in the NICU. Doctors told us he likely wouldn’t make it through the night multiple times, but Adam proved them wrong. His tiny body fought hard and overcame the infection, though he still had a long NICU journey ahead. After 4 procedures, many challenges with his lungs, and one major surgery later, he finally came home after 162 days in the NICU.

Because of his tough beginnings, Adam experienced developmental delays and began receiving ECI services with Easterseals soon after his NICU discharge. When we first started, he wasn’t even reaching or grabbing for toys, had a severe oral aversion, would throw up 10–15 times a day, still needed oxygen support, and had to be connected to monitors for vital monitoring. His first year home was incredibly difficult, he spent much of it admitted back at the hospital in the PICU, facing multiple illnesses and surgeries. Despite all of this, his amazing PT, OT, and Speech Therapists from Easterseals always made accommodations and worked carefully with him, ensuring he could continue getting stronger no matter what challenges came up.

His second year home brought so much progress. As he got older and healthier, therapy became more consistent and has made such a difference. Although he is still delayed developmentally and medically complex, Adam has come so far. He has learned so many new skills, defied so many odds, laughs, communicates, eats by mouth, plays with toys, and continues to reach new milestones with the support of his incredible ECI team. When meeting new doctors, they are always surprised by Adam’s skills and determination which is a true reflection of the hard work and care his therapists have poured into him almost every week for the past 2+ years.

We are beyond proud of how far he’s come and are so thankful for all the work his therapists have done, not only with Adam, but also for the lessons they’ve taught me as a parent so that even as Adam prepares to age out of ECI, I now have the tools and knowledge to continue helping him grow, progress, and thrive in every way possible. Being the mother of a child who has fought for every moment has been such an honor. 

Heart & Voice: Advocating for Tomorrow, is a monthly segment in our newsletter dedicated to highlighting advocacy opportunities for young children with special healthcare needs. This feature will educate and inform parents about current issues, policies, and initiatives that directly impact their children’s care and well-being. Whether you're new to advocacy or looking to stay engaged, Heart & Voice will empower you with the knowledge and tools to make your voice heard and help shape a better future for your child.

Why Representation Matters for Children with Developmental Delays and Disabilities

^{In our work at Easterseals ECI, we emphasize inclusion and belonging—and one of the most powerful ways to foster that is through representation. When children see characters, toys, or role-models who look like them, move like them, use the same supports they do (or similar ones), it sends a strong message: “You belong. Your experience matters.”}

Mirrors and Windows

Representation provides both a mirror (for children to see themselves) and a window (for peers, educators, families to understand experiences beyond their own). A few recent examples:

• In the animated children’s series Carl the Collector (on PBS Kids), the main character Carl is autistic and the writers made sure to bring in neurodiverse voices in production. A newer character, Paolo, is non-verbal and uses an AAC device; the actor voicing him is himself autistic and non-verbal.
• For a child on the autism spectrum, Carl can function as a mirror: “Here is someone like me.”
• For a peer without autism, Carl acts as a window: “This is a way another child might experience the world.”

• On Daniel Tiger’s Neighborhood, the character Chrissie uses leg braces and fore-arm crutches—helping normalize mobility supports and showing children that using aids doesn’t limit participation.
• In the toy world, there are growing options for dolls and playsets that include G-tubes, feeding tubes, enteral feeding support accessories, medical devices, etc. For example: the company The Butterfly Pig designs sew-on G-tube buttons and doll-sized feeding pumps so children can “match” their toy to their own device experience.
• When the well-known toy brand American Girl introduced a doll (Lily) with cerebral palsy, voiced by a person with CP, the impact was meaningful: a little girl hearing “someone like me on the shelf” or “someone like me being someone” matters.

What Representation Does

• Empowers children with developmental delays or disabilities to see themselves as more than their diagnosis or supports. They see peers, characters and toys who reflect their lives.
• Normalizes diversity for children without disabilities—helps them understand that difference is part of human experience, not “other.”
• Supports family identity—parents and siblings benefit from seeing positive, relatable portrayals of their child or family’s journey.
• Fosters empathy, inclusion and belonging in schools, playgroups and community settings.
• Helps advocacy—when children and families see themselves represented, it strengthens the message that they deserve services, supports and dignity.

What Families Can Do

• Look for media and toys in which children with disabilities or supports are portrayed as active, capable, and varied—not solely defined by the disability.
• Use toy accessories (for example dolls with G-tubes or medical play kits) as conversation starters: “Here’s a doll that has a feeding tube—just like you. What do you think that means? How would we care for it? What would you say to your doll?”
• Normalize the supports: If a character uses a walker, braces, a G-tube, talk about it matter-of-factly. Help children see the support as just one part of how that character plays or learns.
• Celebrate the child’s identity—emphasize their strengths, their unique way of communicating or moving or interacting. Support children in seeing that their way is valid and valued.
• Advocate for broader representation—in classrooms, playgroups, libraries, community events. Encourage inclusive toy options, inclusive books, inclusive media.

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