Article
Stories and advice from siblings of kids with CVI
River, Logan and Arianna have CVI—but their siblings don't. Three families offer practical tips and insights into their dynamics.
River (14) and his sister Mira (8) hobble down their neighborhood street, using large sticks from the yard as canes. “Big Debbie, wait for me!” Mira yells in her approximation of a ‘little old lady voice’ before purposefully falling to the ground. The neighbors laugh at the antics from the front porch of their Philadelphia row house.
Meanwhile, in Miami, the Avila kids hop in the car and shut their doors. Liam (13) is driving the four siblings to Chick-Fil-A. No, he’s not getting away with anything illegal. It’s an imaginary car sitting stationary in the living room. His brothers, 11-year-old twins, Logan and Landon, want a five-piece chicken nugget meal with water. Their sister Lauren (14) is along for the ride.
Arianna (15) of Chelmsford, MA, was feeling frustrated. She couldn’t look in the mirror and learn the steps to a dance. So her adult sister came up with a brilliant idea. She’d hold a phone at her waist, focusing the camera on her feet and recording the steps to the music. Then, Arianna could reference the video as she practices the moves.
In these families, the siblings love entertaining each other with silly games and finding creative ways to include each other in the fun. They are building family memories in the process. It’s a dynamic you might find anywhere, but with unique considerations because River, Logan and Arianna have CVI.
Early memories of tight bonds
Shannon Ryan, mom to River and Mira, says they were always “as close as two kids can be, especially at that age difference,” which spans seven years. “He’d make videos of her as a baby. Even now they sometimes dress alike for fun and call themselves “double trouble.”
Barbara Lopez Avila reminisces about when her twins were born. The older two children were so young, they don’t remember a time without them. “They were very excited when the twins were born,” Barbara reminisces. “They were allowed in the NICU with little hospital gowns made just for children.”
Elaine Cleaves welcomed Arianna to her family on Christmas Eve. “I was an emergency foster home,” she explains. She adopted Arianna, who is the twelfth and youngest child in the family. The siblings in her adoptive family are all adults, eight of whom were also adopted through foster care. Arianna also has three biological siblings and 43 nieces and nephews who are closer to her in age than her siblings. When they visit “they go swimming, they jump on the trampoline, they do normal kid stuff like dance, listen to music, play Gameboy,” says Elaine.
How siblings describe CVI to friends
When I ask how they tell a friend about CVI and the ways it affects their brother, the Avila kids are nonchalant. In fact, in all their descriptions of Logan, they never once mention his diagnoses, including CVI and cerebral palsy.
His twin, Landon, says, “They usually think he’s my younger brother. But when they find out that he’s actually older than me, they’re sometimes surprised. So sometimes they figure it out because when I see Logan I’ll kind of give him a hug or give him high five, but my friends already know about Logan so when they see him they’ll also say hi and give him high fives.”
Older sister Lauren describes her more direct yet practical approach. “I’ll say that because of his vision, like it’s a little different, he’s not blind. He can’t always recognize you. He’ll listen for the sound of your voice.”
In their estimation, the need to explain CVI doesn’t come up that often. Instead of focusing on medical diagnoses and needs, the siblings are much more interested in sharing Logan’s favorite activities, like stretching on the sidelines with their soccer teams or watching older brother Liam play video games. They speak with admiration for his friendly nature and big hugs. They describe his sense of humor.
“Sometimes he’ll mock me in a funny way,” Landon says. “Let’s say I’m trying to jump onto something, he’ll stand up and pretend to jump and then miss—to mock me that I was missing the jump.”
No special treatment
While these siblings report they give no special consideration to CVI, there are still moments when parents must actively work to ensure that every child in the family is treated equally.
One of River’s chores is to clean out his lunchbox after school. Shannon reports that he does less than a stellar job. “He’s a teenage boy and doesn’t want to do it. When I call him down to fix it, Mira makes excuses for him. ‘Mama, he couldn’t see it!’”
Shannon feels it’s important to enforce chores across the board. After all, “you don’t have to be able to see to swirl the sponge around. CVI is not keeping him from doing the dishes.”
Practical tip
Treat your child with CVI like other kids. Shannon recalls that River’s pediatrician told her early on that the biggest thing she could do for him is to treat him like any other child, to expect that he is capable. “That really stuck with me and I’ve always tried to live by that. To let him have consequences that are natural. Demonstrating that to Mira and to family and to neighbors has been one of the biggest challenges.”
Elaine agrees. “Arianna was always brought along. Nobody treated her anything special.” Today she bikes, runs, bakes and sells cupcakes, and participates in aerial acrobatics (16 feet off the ground, Cirque du Soleil style).
Read about CVI and everyday ableism.
Balancing attention
As parents, we don’t want to raise a “glass child” who we see right through because we are preoccupied with their sibling’s needs. “What Mira expresses mostly about CVI,” Shannon says, “is that River gets a lot more attention. And you know, whether it’s negative attention or good attention, it’s all the same. Right?”
When River’s Orientation & Mobility specialist visits him on Thursdays, they take walks to the co-op grocery store a block away. The lesson requires River to navigate to the store and independently purchase a treat. Even though River brings something home for his sister, it sparks jealousy. Mira laments to her mom, “I don’t ever get to buy candy!”
Practical tip
Shannon recommends helping the sibling cultivate their own interests and activities, like Mira’s ballet and art classes. Shannon also grabs one-to-one time when she can. Recently she took Mira to Starbucks for a special breakfast. “She got her little vanilla bean frappuccino and then she’s like, ‘I really want a cake pop.’”
Shannon agreed, but only if Mira went to the register to buy it on her own. “Your brother has to do this, you can do it too,” she explained. A lightbulb went off for Mira, who asked ‘Oh, is this what he does on Thursdays?’”
Making sure their brother is one of the crowd
The Avila kids all attend the same summer camp, which has a little something for everyone. They go off to their own activities with peers, but often run into each other during the in-between moments.
At camp, Lauren likes to introduce her dance friends to Logan. “We were all showing him how to do a selfie and showing him part of our dance too.” And if other kids are waving at him from across the way, “I usually mention it when they are saying hi or waving at him and maybe he’s not looking at them, I tell him, ‘They’re waving at you.’”
Landon explains that he doesn’t think about his brother’s differences too much. “That’s how I know him, it feels pretty normal. I mean, I guess sometimes I will notice… But I talk to Logan regularly.”
Playing caretaker
It’s common for siblings of kids with disabilities to naturally step into a caretaking role. In a 2003 study, Cuskelly and Gunn compared siblings of children with disabilities to siblings of typically developing children, finding that they were more likely to take on caretaking responsibilities and build a strong sense of obligation and empathy. This could have positive or negative effects on the sibling.
“My biggest fear is Mira feeling like she has to sacrifice things for herself to take care of him,” Shannon confides. “I don’t think that’s going to be the case, but I definitely see her feeling like a caretaker. Not that he needs a caretaker or that he won’t be independent, because I think he will. But I do hope that she feels like she can go off and do what she needs to do. I worry that she’s going to want to always put him first.”
Landon explains that he spends a lot of time answering his brother’s questions about the calendar or routine. “He asks a lot of questions. We just answer. It’s the same five questions. When he’s hungry, he’ll be constantly asking for food or asking for therapy, if he has any more, if he’s done for the day.”
Author aside
When my own children were in preschool, they spent a few months in the same classroom. My older daughter, Grace, has CVI. And Liz, younger by 17 months, does not. Shortly after Liz joined the class, the teacher pulled me aside. At first, she had been surprised that Grace was getting up from her nap, putting on her shoes, and stowing her mat in record time. Then she realized Liz had been doing it for her. We agreed it was time to move Grace to the older class, making room for them both to act independently.
While children don’t necessarily see their commitment to a sibling with a disability as a burden or chore, there are ways to communicate to them that caretaking is not their primary responsibility. We can also help the sibling understand the importance of letting their brother or sister do things independently.
Practical tip
When Arianna was young, Elaine operated an in-home daycare with six other kids approximately Arianna’s age. If any of the children jumped in to do something for Arianna, “I started doing things for them and they didn’t like it!” she laughs. “They knew they could say to Arianna, ‘Do you want me to help?’ But if she said no, they might follow with ‘Can I hold your paper while you use the glue stick?’”
Shannon explains to Mira that it’s not fair to River when they don’t give him the chance to do things for himself. “He’s not able to do everything, but he’s capable of doing most things. And yes, it takes him a little bit longer to learn how to do things and to get comfortable doing things, but the biggest gift we can give him is putting him in those uncomfortable positions.”
Besides, siblings have themselves to look after too. River and Mira flew to Memphis to visit their grandparents and each ordered a Diet Coke on the plane, a treat on rare occasions. River quickly became engrossed with his iPad, and Mira started to worry that if he didn’t finish his drink it would make a mess in the flight attendant’s trash bag.
“She drank his Diet Coke and was about to bust, so she went to the bathroom and got locked in,” Shannon relays the story with a laugh. “A flight attendant had to come to rescue her.” Mira learned that it’s not always in her best interest to do things for River. They’ve agreed to split a Diet Coke next time.
Large family dynamics
Big families are wonderful and have beautiful benefits: lively conversation, plenty of playmates, extra love to go around. But when everyone is together it can be a party—which isn’t always the best atmosphere for a child with CVI.
Arianna is accustomed to being an only child, since her adult siblings live on their own. But what’s it like when everyone is home? Elaine explains that the family gets together “from the night before Thanksgiving until Sunday and everybody brings leftovers so I have plenty of food.” The noise and bustle take a toll on Arianna. “She loves it when they come, but she will disappear down to her room. Things get too crazy.”
Logan is so tuned in to his three siblings that he is sometimes overwhelmed by their exuberance. He has been known to mistake excited, loud voices for anger. “If someone is sad, then he’ll get sad too,” says Liam. “When someone is angry, then he would start crying.”
Practical tip
Even if you don’t have 12 kids and 43 grandchildren coming home for Thanksgiving, you may gather with extended family for reunions. This might be difficult for your child. For example, Arianna finds it more challenging to connect with her siblings, their partners and their children in a large family group, since she has trouble recognizing faces. So Elaine previews their photos before an event. “She can tell everyone in the family apart if I give her pictures of them before they get here,” says Elaine. “She doesn’t have a memory for faces. But she has a memory for body movements.”
When they grow up
It can be hard to fathom, but kids grow up! And parents won’t always be around to manage the needs of their adult child with CVI. This is a serious concern for many of us, one that I’m not equipped to fully explore here.
But it’s interesting to think about the long-term effects of growing up with a sibling with CVI. For example, it may affect career choices. Some siblings of CVIers may become advocates in their day-to-day lives. Growing up with a sibling with CVI may also affect stress levels, relationships, and personal character traits.
Several of Elaine’s older children are nurses and daycare providers. Their experience as Arianna’s sisters continues to help other kids with CVI. In their professions, “they watch for it all the time,” says Elaine. “They can’t obviously diagnose it, but they can suggest to the parents you need to do this, you need to do that. Yeah, we’re all very much versed on CVI.”
Shannon feels confident that her kids will remain close through every stage of life. On a post-dinner walk, Mira shared her dream for the future. When she’s a grown-up, every Tuesday night she’ll leave her babies with her best friend. “I’m gonna say, Lucia, you stay here with the babies. I’m going to my brother’s house to have a little cup of wine.”
References
Cuskelly, M., & Gunn, P. (2003). Sibling relationships of children with Down syndrome: Perspectives of mothers, fathers, and siblings. American Journal on Mental Retardation, 108(4), 234–244. https://doi.org/10.1352/0895-8017(2003)108<234:SROCWD>2.0.CO;2
