Stories

When Haydee's son Mathiaz was born early at 31 weeks, he spent significant time in the NICU. Much of that time was spent helping him to breastfeed and feed from a bottle, both of which proved to be quite challenging for Mathiaz's premature frame. This is when Haydee first met Jennifer D'Attilio, CCLLC director of speech and language services. At the time, Jennifer was the Clinical Coordinator of the Speech Pathology Department at Natividad Medical Center where she facilitated the first neurodevelopmental team in the NICU. As a speech language pathologist with experience in the NICU, Jennifer's expertise with feeding and swallowing helped both Haydee and Mathiaz greatly.

For the next nine years, Haydee would work tirelessly to help her son, with the support of Central Coast Language & Learning Center. Mathiaz has experienced incredible progress with his speech, feeding and swallowing, but it didn't come without difficult moments for Mathiaz, Haydee and their whole family. With a diagnosis of Down syndrome and a feeding disorder, Mathiaz experiences added layers of difficulty when it comes to basic functions such as eating and can benefit from lifelong professional support. While the support he receives from our speech therapists today focuses more on forming short sentences and using an AAC (augmentative and alternative communication) device, the building blocks of feeding therapy still come into play on a daily basis.

Haydee's experience with her son's feeding struggles is not uncommon. Many parents struggle to know how to help a child with a pediatric feeding disorder, and the ripple effect this can have on a family is all too difficult. We hope as you read Haydee's words, that you feel less alone in the struggle, find hope and encouragement in Mathiaz's progress, and know our team of therapists is here for you and your child.

How did Mathiaz's feeding disorder affect you as his mom?

"I would cry often. There were days when I would tell Jenn, 'What am I doing wrong?' I would take full responsibility and wonder what I was lacking that had caused this. I often cried myself to sleep trying to think of how I can help him."

What support did you receive from Jennifer during those moments?

"Jenn has always told me not to beat myself up. She has been my biggest cheerleader throughout this and been so patient with me in giving me advice with how to go about helping him."

Looking back, is there a moment you remember feeling hopeful and experiencing progress with Mathiaz's feeding?

"I had to accept my son for where he was at and not worry about where things needed to be. That [mindset] was huge, that is when things started to change."

What has progress looked like for Mathiaz?

"He went from being completely dependent on me to feed him and still having that be such a struggle, to now self-feeding soft foods like pastas, beans and eggs. Because of his low muscle tone, drinking out of a straw cup is still challenging, but we are working on drinking from an open cup."

How has Mathiaz's progress affected you and your family as a whole?

"I went from dreading every feeding to now I am excited to eat together. Mathiaz will actually sit at the table with us now and it's just so exciting. Watching his face when he tastes a new flavor is an amazing experience. I am excited about where we are at, and I am looking forward to where we will end up. It's been a very emotional journey for me as a mom. The fact that we can actually sit down together and have a meal together at home and at a restaurant … those are the things that make us happy."

What advice do you have for other parents dealing with a pediatric feeding disorder?

"Don't lose hope. And most importantly remember to meet your child where they are at, not where you expect them to be. That was my biggest mistake."