One-year-old Louisa absolutely adores her Uncle Matt. He makes her laugh and giggle as he goofs around, and calms her with singing as he does the bottle feed.
Their bond is beautiful, and even more so because their relationship shows how people with Down syndrome can play a special role in helping care for kids.
Special education teacher Erin Johnson, 28, and her little brother with Down syndrome, Matthew Rhodes, 22, grew up in Palatine, Illinois, where Matt still lives. Matt is also the most tender-hearted, joyful person you’ll ever meet, says Erin.
“Matt is a whole lot of fun! He is hilarious and loves to make people smile,“ said Erin. ”He is affectionate, attentive, and gentle with his nephew and niece. He is forgiving and loving.
“I am so excited that my kids have such a devoted uncle in their lives. He thrives when he is with my kids. It’s totally mutual. They will gain so much from him.”
Erin grew up with Matt as “best friends,” and says she was always very drawn to her brother when he was a baby, and their “connection was instant.”
She now lives in Holland, Michigan—a three-hour drive away from her beloved sibling—with her husband, their daughter, Louisa, and her big brother, Dominic, who is three years old. They see each other often, though, and talk on the phone at least once a week.
The way Matt has taken to being an uncle has been an enormous blessing for everyone. Erin says that, when her son came along, Matt took serious ownership of his role.
“Matt has always been very sweet and loving, but he sometimes can love too intensely—big bear hugs—and be loud,“ she said. ”With his niece and nephew, he is so soft and gentle and quiet. We knew he would love his niece and nephew, but his gentleness and attentiveness surprised all of us!”
Erin shared that she and her husband thought “there was no way” he could be as amazing with another baby as with their first.
“I thought his connection with Dominic was one of a kind. And it is!” she said. “But he formed just as strong a connection with Louisa too.”
Upon meeting the little lady on day three, when she was brought home from the hospital, Matt was entirely smitten.
“It was such a special, beautiful interaction to witness,” said Erin, who was excited to see the bond that would develop.
With the thoughtful Uncle Matt helping in any way he can, their bond has grown beautifully.
“He loves getting her from her naps. He loves snuggling her,” Erin said. “He loves being silly and making her laugh, and he loves to sing to her while he feeds her a bottle. Changing diapers isn’t his favorite but he is eager to help!”
Whereas Dominic is highly active and full of energy, little Louisa has a steadier temperament, says their mom. Describing Dominic as “creative, imaginative, and very intelligent,” Erin says her son has a big heart for the people he loves, just “like his uncle.”
Over time, Matt has consistently demonstrated how capable and trustworthy he is with his nephew, so the couple has no qualms about asking him to watch Louisa. Matt does so happily, and is always very engaged with her when they return, says Erin.
“He is so gentle and attentive,“ she said. ”If he doesn’t feel comfortable with something, he always yells ‘Erin!’ or gets someone to help. He has never given me a single reason not to trust him.”
In addition to helping out the parents, Matt is changing some peoples’ preconceptions about Down syndrome. By sharing special moments on her Instagram account, Erin hopes to change the narrative and perspectives that exist surrounding adults with intellectual disabilities.
There are a lot of commonly held beliefs about the condition—and regrettably, sometimes ignorance.
“I love showing that my brother is capable of more than what people tend to assume a person with Down syndrome can do,” she said. “There have been many hateful comments, but those only fuel me to keep sharing. The majority of comments we get are very kind.”
Instagram users often comment that they had no idea people with Down syndrome could care for children; and some thank Erin for sharing glimpses into her family’s life.
Erin loves watching and recording the everyday moments Matt has with her kids, because it enriches him, too.
“Nothing makes my heart fuller,“ she said. ”I’m so glad my brother gets to have a role where he gets to lead and care, because it’s often been he is the one receiving the care.”
