Story
How writer Mia Carella teaches inclusion and raises a CVI advocate
Writer Mia Carella prioritizes inclusion and self-advocacy when it comes to raising her daughter, Evalyn, who has CVI.
We all need encouragement sometimes, and Mia Carella is there for us. She uses her writing talent to lift the hearts and minds of parents of kids with disabilities. It’s a fitting pursuit for a mother who doesn’t go a day without thinking of her daughter’s heart and brain. You see, Evalyn has lived for 13 years with a congenital heart defect and CVI.
Mia says that if you looked at her the day Evalyn was born and asked her what it would be like to have a teenager, there is no way she could have predicted life as they now know it.
“Before I had any parenting experience, or before I knew her, I would have told you my whole set of expectations based on what I remember from my own teen years, going to middle school and turning 13,” says Mia. “But what I found with Evalyn is that at some point I just stopped having expectations as compared to typical ages. I just kind of take things as they come, one day at a time.
“I’ve just watched her grow and blossom into a stronger person. She’s always been strong, but every day she just amazes me even more.”
Transition to middle school
Maybe you remember your middle school years. Many of us were awkward and self-conscious about the big changes happening internally, physically, and in the social realm. So it can be difficult to separate our memories from how we approach the elementary-to-middle school transition with our own children.
I recently navigated this one, too. Just a year ago, I quelled deep anxiety over whether my daughter would be included, receive proper academic support, and find her way through the halls. I was eager to discuss this shared experience with Mia, whose daughter is now in seventh grade.
Mia expressed that she and Evalyn both felt anxiety over the transition. After all, Evalyn spent seven years in the same elementary school with the same teachers and same staff. What would it be like to introduce CVI and Evalyn to a new group of people? It seemed like a big hurdle that would require some early momentum.
“We started communicating about the transition early on, at a transition IEP meeting the April before she was going to middle school, and it was a meeting with her elementary school IEP team and the middle school IEP team,” Mia explains. “So we met and we started with the introductions, getting to know each other, and me asking my questions and expressing my concerns, just so all expectations were out on the table.”
They maintained ongoing communication, even after the transition meeting. “I would reach out through email and just touch base if anything came up, just to keep that conversation going. So the team would really know Evalyn before she even got to their school.”
The team also did what they could to prepare Evalyn for the big move.
- Her Orientation & Mobility instructor made a video tour of the building so that Evalyn could review the layout on her iPad.
- The team took photos of key people, so Evalyn could begin to familiarize herself with teachers and staff.
- Evalyn visited the middle school for walkthroughs before the school year began.
Inclusion and social belonging
One of my favorite messages that Mia has put out on her social media pages is about social belonging: Inclusion isn’t just inviting someone to sit at your table, it’s believing they belong there.
Can our middle schoolers with CVI truly belong? Mia says yes, they can. Let your child follow their passions and find their people. “If they have an interest in something, I would not let the fact that there is a disability affect your decision about if your child can do that activity because there are ways to make things adapted and accessible for our kids.”
Evalyn has enjoyed her time in musical theater and basketball, both of which required accommodations to make them accessible for her.
“For example, the script book that the kids got with all the songs in it was full of sheet music and tiny lyrics. It was visually way too complicated for her to be able to follow. It was way too cluttered and not manageable,” Mia says.
“So what we ended up doing is taking the lyrics of all the songs and typing them into Google Slides so Evalyn could follow along on her iPad…because the kids don’t read the sheet music anyway, most of the time they’re just using it to learn the lyrics…She was able to bring her iPad to all the rehearsals and use that.
“Overall, the kids were wonderful, the directors were wonderful. Everyone had a completely fulfilling experience, and she was so proud of herself.”
The production team also:
- Recorded videos of the choreography for at-home practice at her own pace.
- Assigned a buddy to accompany her for stage entrances and exits, especially in low light.
- Added glow tape to the edge of the stage as a visual cue.
Navigating the fun stuff, like testing
Mia bemoans the amount of testing Evalyn has had to endure as a kid with CVI. She says its been “a barrage of evaluations and tests ever since kindergarten,” especially in preparation for IEP meetings.
“That was when the numbers just really hit me, like seeing your child boil down to low numbers on paper that absolutely do not tell the world who they are,” Mia reminisces. “So ever since then, testing has been difficult.
“I make sure that when there is going to be testing, we approach it through a CVI lens and that adaptations are made to make it as accessible as possible for her. We know that for our kids with CVI, standardized testing is really geared a lot through the visual perspective. A lot of times our kids do not perform in a way where the data is going to be usable. It’s just really important that you make sure that you communicate the necessary adaptations. You also have to keep everything in perspective and take the scores with a grain of salt.”
Being an advocate — and raising one, too
Those of us who have teenagers and young adults have been telling people about CVI for a long time. It’s not one of those conditions that is immediately understood without background information. I asked Mia if it frustrates her that, 13 years later, she’s still explaining CVI.
“I’m not surprised. I’m just tired,” she sighs. “I would have hoped that 13 years down the line I wouldn’t have to explain so much … you have new teachers to explain things to [every year] … not everyone has the background that we do. As parents, we’ve become experts in this. So it’s hard. I’m not surprised, but I wish it wasn’t this way.”
Mia shares that writing is an outlet for her, a way to process things. Thankfully, her work also has the added benefit of raising awareness about CVI and supporting other families along the way. But it can be an emotional journey, particularly when the majority of people you interact with daily have a completely different set of concerns.
On a personal note, I struggle with how to respond to someone who seems to harp on the small things. Mia completely shifted my perspective by reminding me that our struggles are not a competition.
“In the past, when I would hear someone complaining about something that I felt was very trivial, I would be upset by it,” Mia reveals. “But now I’ve come to realize that our struggles are not a competition, and everything is in perspective. The things that may seem so small to us are the big things for them.”
She says she had to earn this wisdom. In the beginning, she found it very difficult to listen to a parent discuss something that seemed silly in comparison to her baby’s open heart surgery. “Through my years as a parent, I realize everything is relative.”
Despite these tough moments, there are few things more buoying than watching your own child develop self-advocacy muscles. Evalyn is emulating her mom’s constant message of empowerment and high expectations. She’s standing up for herself and Mia takes great pride in her growing independence.
“Last year in sixth grade, I loved that the word advocate started becoming a regular addition to her vocabulary,” Mia smiles. “She would come home and say, ‘Mom, I advocated today.’”
When Mia asked what she did, Evalyn might say, “‘Well, I told my teacher when it was too noisy’ or ‘I told my teacher when I couldn’t see something that was on the board.’”
Mia glows when she shares how amazing it is to watch the growth. “I love seeing her come into her own and learn how to stand up for herself. It’s really great. And I feel like she does know that I’ve been fighting for her for all these years, and I feel like she’s starting to be able to do that for herself. And it’s wonderful.”
If you’re looking for a regular dose of wisdom and encouragement crafted especially for parents and care partners of kids with disabilities, follow Mia Carella on Facebook and Instagram. You’ll also find inspiration in other CVI parent stories. Here are just a few:
