Grand Rapids Family Watches 7-Year-Old Son with Down Syndrome ‘Flourish and Thrive’ After Unexpected Diagnosis at Birth
Jake Newby
| 5 min read
Not a single ultrasound over the course of RaeAnne Porte’s pregnancy indicated her firstborn child would have Down syndrome. So, when doctors told her that was the case less than a minute after delivering her son, Rockton, in 2017, she was in pure shock.
Down syndrome, a genetic condition in which a child is born with an extra chromosome, is often associated with developmental challenges, such as taking longer to learn to speak than other children. Individuals with Down syndrome also have distinct physical signs and are often subjected to social stigma.
Grand Rapids residents Porte and her husband, Jake, were generally aware of these facts upon learning of Rockton’s condition, but knew they had a lot to learn. Not only was Porte a brand-new mom, she was also a brand-new mom of a child with special needs.
“When we left the hospital, that’s when I immediately started texting everyone I know,” recalled Porte, a Blue Cross Blue Shield of Michigan member. “’Who knows somebody who knows somebody that has a kid with Down syndrome?’ Because I don’t know anybody. No adults with Down syndrome, kids with Down syndrome. I think everybody processes it in different ways, but I looked for help right away.”
Porte was extremely proactive in Rockton’s first few months of life. She rang her pediatrician all the time. She and Jake quickly connected with Early On Michigan, which provides assistance to families raising toddlers with developmental delays. They also became part of the Down Syndrome Association of West Michigan family, where they forged relationships with people with Down syndrome in their families that exist to this day.
Rockton’s infancy was a “roller coaster” in the beginning, but once the Portes got a handle on things and developed a sound support system, they were able to regularly take steps back to cherish the journey of raising Rockton.
Learning on the fly: the importance of early intervention and the joys of sharing Rockton’s journey with others
Early intervention was everything for the Portes. Before Rockton even attempted his first milestones, RaeAnne and Jake took time to learn what rolling over, leaning, crawling, standing and walking looked like. They were intentional about every step of Rockton’s development.
“With a child with Down syndrome, there’s always a plan in place, from day one,” Porte said. “It’s not overwhelming if you just think about all the potential you’ll see in your child over time, once you set yourself up for it and have all those early discussions.”
If you’re friends with RaeAnne and Jake on Facebook, you won’t go very many days without seeing them gush about Rockton on your newsfeed. They’ve shared much of their parenting journey in picture-filled posts, like the first time Rockton formed his first three-word combination and how fond he became of waving when he learned that skill at age 1.
“Of course, I want to tell everyone in the entire world how amazing it is to get to know somebody with Down syndrome,” Porte said. “Before having a child with Down syndrome, I never intimately knew a person with special needs … For me, I just didn’t have that exposure. Now, I want to provide that exposure for people because of all the benefits you get from knowing somebody with special needs. It’s like your whole world gets opened up to this level of empathy and unconditional love and joy that you might never have seen if you hadn’t taken the time to get to know someone with special needs. Specifically, with Down syndrome.”
‘I just continually was blown away:’ watching Rockton grow and shutting down the stigma along the way
There was a time that RaeAnne thought Rockton’s life would be somewhat bleak. She was aware of the stigma society puts on people with Down syndrome. That they don’t necessarily grow up like other kids and once they do, they struggle to achieve the same levels of personal and professional success.
“People just didn’t know a lot about Down syndrome itself,” Porte said. “Now, with advancements in learning about Down syndrome, advancements in early intervention and therapy and the medical field … so many things are working in favor of our kids these days. So, as Rockton grew older, I just continually was blown away by all the things I was able to learn through doctors, therapists, teachers, other moms, families. The whole gamut.”
Porte admittedly went from putting Rockton in a box to gleefully watching him shatter glass ceiling after glass ceiling. The fun-loving 7-year-old is constantly making people laugh with his infectious sense of humor. When he’s not sharpening his reading and math skills at Grand Rapids Christian, he enjoys scootering with his 3-year-old brother, Beau. He loves eating at Potbelly Sandwich shop and visiting one of his favorite places on earth, Schwallier’s apple orchard and pumpkin patch. He plays soccer, football and tennis and attends church on Sunday mornings with his family.
“This kid is super smart, he’s totally busting all the perceptions I think people have about special needs,” Porte said. “With my younger child, sometimes I tend to take (certain milestones) for granted. With Rockton, we have worked with him for years on doing certain things and so for him to be able to achieve those things, it’s just been really cool.
“When I think about Rockton being 20 years old, I just get so excited for the friendships he’s going to have, the people he’s going to impact and share joy with and all the skills and abilities he’s going to have then, knowing what he can do now,” Porte added. “It’s just been a joy to be his mom and to love on him. And to be able to see him flourish and thrive.”
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Photo credit: RaeAnne Porte
