Roro’s Story

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raucaria (or ‘Roro’ as we call her at home) was born with Down Syndrome and spent her first two weeks of life away from home in the NICU as she fought through multiple medical challenges. Even while still in the womb we could tell that Roro was a very spirited girl, holding her own dance parties inside her mom’s belly. She continued to show this sprit at the NICU, managing to yank out her feeding tube at least four times per day. We had learned about her diagnosis through genetic screening and were scared and unsure about what this would mean for her future. We imagined her struggling with simple joys that usually come with a newborn. Would she be able to make eye contact, smile, roll over, communicate, sit-up, walk, or recognize our faces?

Fortunately, we connected with friends of ours who have a son with Down Syndrome who received early intervention services from Boyer Children’s Clinic, and were told about their wonderful experience. As two working parents, we were unsure how we would be able to juggle therapy session with two demanding jobs and a plethora of activities for Roro’s two older sisters. Boyer was incredibly flexible and came up with a plan to meet us at her daycare, initially for Occupational Therapy and then Physical Therapy with Lindsay Mayors while she was a baby. As Roro grew older, we added Speech therapy and began meeting with Mary Ellen Buchanan for Special Instruction. These sessions had a dramatic impact on her strength, communication skills, and ability to interact with her family and environment.

When Roro was born, we didn’t know what kind of challenges would be in store for our family, but we did know she was feisty. Regardless of any medical diagnosis or expectations we might have had, sometimes the most frustrating parts of parenting are the simple things. Like many children, Roro developed a habit of throwing all of her food and utensils on the floor during meals. From hours of daily cleaning, getting children to not make a mess and clean up after themselves is many parents’ dream.

Despite switching to all remote sessions due to COVID-19, we worked with Mary Ellen to create a plan to teach Roro new behavior and focused these remote sessions on mealtime. We found that Mary Ellen worked really well with Roro’s style of learning, and over the course of a few months she had learned not only to keep her food on the table in front of her, but to happily put all of her utensils away at end of meal ‘Clean-Up Time.’ Roro is so proud of herself now when she finishes Clean-Up Time and gives herself a round of applause as the whole family cheers!

Mary Ellen and Lindsay have an awesome connection with Roro during our sessions and we can see the love that they put forth in their ‘work.’ They treat Roro as their own and always have her best interest in her success. Their amazing ability to connect and engage Roro is invaluable and heart-warming. Without their help, we don’t think Roro could have made these amazing leaps and bounds. Who would have thought that the worrying diagnosis of Down Syndrome would turn into something amazing where Roro gets to share her impressive improvement not only with her immediate family but also with her extended family at Boyer who we feel truly cares and loves Roro for how she is. We truly believe that early intervention, especially with Boyer, is a true blessing with caring individuals who understand Roro and her development. Early intervention really does changes lives!”

-Dan & Tonibelle, Roro’s parents