Story
A day in the life with CVI: Omer
Welcome to a day in the life with junior high student, Omer, who has CVI and cerebral palsy, from his morning routine to family game night.
Omer is a 7th-grader with CVI. The 13-year-old has a busy schedule: He goes to a public Junior High in Massachusetts, plays power soccer, and loves listening to audiobooks. He’s also an eager sous chef and a competitive Yahtzee player with his twin brother, Aiden. His mom, Burju, shares a day in their life.
6:30 a.m. Wake-up time
Mornings are joyful with Omer because he’s refreshed, not tired. He’s more himself in comparison to the afternoon. I really enjoy waking him up and getting him ready for school. He always asks for “five more minutes!” when the alarm goes off.
7 a.m. Morning routines
While Omer wakes up, I’ll go downstairs to make breakfast. I’ll come back upstairs to get him out of bed to go to the bathroom and get dressed. We take our time. He doesn’t like to rush. I try to let him do things at a slower pace. It usually takes about a half-hour to get him dressed and to get to the chairlift that takes him downstairs.
7:30 a.m. Breakfast
Omer has breakfast in the same spot every morning, in his chair, close to the TV. He loves eating! He eats breakfast from a special pocket tray table, similar to a laptop tray. Before serving him breakfast, we go over what’s in front of him. He always eats a homemade muffin or pancake from the same plain white plate, and he loves bacon, milk, and bananas. He also won’t leave for school without eating pistachios!
While eating, he’ll watch TV: He loves cooking shows and people making different recipes. He also likes watching YouTube channels of other people’s lives, going to arcades and stores. He says it’s easier for him to follow because they describe everything that they do. That really helps him.
7:45 a.m. School bus arrives
His van comes, and he rides to Junior High. He takes a different bus than his brother. His brother takes the yellow bus, which was a big deal when Omer was little; he wouldn’t accept that he needed a different bus.
8 a.m. -2:30 p.m. School
Omer loves school this year. He says that he has so many friends. But it’s hard: He gets really tired because he needs to transition from class to class, and he only has three minutes in between. He needs to be helped to get to the next class on time. He doesn’t like that. He likes to be independent.
Omer has a normal-length school day, and he spends part of the day at an Academic Learning Center. Kids go there to take a break or to review material that they didn’t understand in the classroom. He also goes to a slower-paced math class, with a smaller number of kids.
In December, when Omer was in sixth grade, we toured the middle school building to get familiar with it. He met with his upcoming team: an O&M specialist, PT, and OT. That was nice, because when he started school, he already knew the building. He knew the layout. He toured when kids were in class, so nobody was in the hallway. It wasn’t cluttered. He was able to really study the hallway, the cafeteria, the lobby, and the bathroom. He felt very comfortable. It helped so much with his transition.
Then, in May before junior high, I met with the principal, nurse, and special educators to explain who Omer is, what he likes and doesn’t like. I warned them that sometimes he might talk out of context or inappropriately — not intentionally. I explained how he might need reminders, but to please be patient with him. It really helped them to prepare for Omer, so he wouldn’t get in trouble.
At home, we also started talking about middle school and responsibilities like homework, because he didn’t have any homework in elementary. In middle school, there’s tons of homework, and grades! We started talking about how we don’t care about grades, as long as we do our best and learn the content.
Omer might not get the highest grade. He compares with his brother. I told them: “You know, it’s OK to get Cs or Ds, as long as you know the content, and you show me that you’re doing your best.” We really focused on that and kept repeating it, which really helped them.
The first trimester was hard. Omer was not getting very good grades. But he kept saying, “I remember you said as long as I did my best — and Mommy, did I do my best?” And I’d say, “Yes, Omer, you did your best.”
And you know what? As a kid, I used to get anxious during exams, and sometimes anxiety just kept me from doing my best. It’s OK! By the second trimester, he really did a great job. His grades improved, and he was on the honor roll at some point. I think the first trimester was hard, trying to adjust and getting to know people, and his teachers were getting to know him because they didn’t know him and his vision needs.
His school is still trying to understand his CVI. They had never heard of CVI, or they never taught kids with CVI. It’s a learning curve. This is one of the most difficult years, in terms of Omer’s vision needs getting met. It’s still not there. But we’re getting closer. I have to remind myself that, as parents, we have to be patient. People are trying their best.
Omer has a 1:1 aide, counseling services, PT, OT, O&M, and assistive technology. He’s also had the same TVI since 3rd grade. They have had a long relationship and know one another well.
Omer stays at school until 2:30 p.m., although sometimes he’ll need to come home early if he has a migraine attack. Last week, I had to pick him up to take him home. He’s working so hard throughout the day.
While Omer’s at school, I work. If I have a break before he comes home, I’ll go for a walk — or sometimes, I just lay down in bed and do nothing! I have an app, Calm, that helps me take a 20 to 30-minute nap, and I wake up really refreshed and ready to go. As they get older, during school hours, I try to find those little moments for myself.
But the other day, I needed a haircut. Omer came with me, and he had fun talking to people in the shop. He was chit-chatting with the ladies in the waiting area, and he’s like: “I think your hair looks fantastic!”
And the old ladies were like, “Oh, you’re so sweet!” They were taking selfies with Omer like he’s a celebrity, and he loved it.
2:45 p.m. School’s out
Omer comes home pooped, a different kid than when I send him to school. I don’t have high expectations from him after school. We do fun stuff.
As soon as he comes home, he plays with Fluffy, our dog. It’s a break. We talk about the day. Omer loves to talk about what happened at school and what people are doing. He says, “It’s gossip time!” Then he tells me all the things that happened at school. I really like talking with him, and he’s a great listener. That’s a strength, and his conversational skills have really improved over the years.
And then he wants his phone because he wants to connect with friends. And that’s just a vision break or a break from life. He also texts with friends or family from Turkiye.
If he has homework, he has to do it first thing. He knows this, because he says he doesn’t want to get any more tired.
I have to support him throughout the process. He’s not independent. I sit with him and explain the context, because even comprehending what he’s reading is impacted by his fatigue level.
In Math, I have to read the question and then ask him: “What are they really asking?” And then we go to the answer. If it were morning, he would just read and answer the question. He’s really tired in the afternoon.
Omer’s brother comes home at the same time, and he is very independent. He helps with the dogs. He and Omer love to hang out together, but not every day.
This year, because they’re now teenagers, they have their own friends, so they connect with them over phone or texting. They want their own spaces. But yesterday, they wanted to play Xbox together. So they went to their rooms and to play. Omer is very easygoing; he gets along with everyone.
4 p.m. Chill
After homework, we chill on the couch. Some days are easier than other days. I can really tell if things were really visually adapted that day, based on how tired Omer is. Ideally, his worksheets are simplified and digitized, with one or two questions per page with larger font. If not, he’s more fatigued, more tired, and less responsive in terms of following directions.
6 p.m. Dinner
Omer loves to help make dinner, but he doesn’t know how — it’s more like I’m helping him, and it becomes more difficult for me. It’s something that I need to learn.
We have a lower table, a side table, that I use in the kitchen because our counters aren’t adapted to his wheelchair height. If I’m going to make a salad or something, I put it on that table and I ask him, “Can you please mix this?”
Omer really cannot cut veggies yet, because he can’t use his hands 100 percent, but he’ll be mixing or wiping things. He really wants to be a part of everything. Whatever’s happening in the kitchen, he needs to be there! Or we’ll make a smoothie, and he’ll gather the materials. I’ll give him a list, and he’ll get it from the fridge.
If everything is laid out on his table, Omer can use utensils and feed himself. He can drink from an open cup, no problem. But let’s say we’re eating pizza. When he needs another slice, he’d ask for help getting it.
Pizza is definitely one of his favorite foods. He loves grilled chicken and salad. He needs a little bit more support with scooping the salad. He uses a spoon better than a fork. We use an adaptive spoon from Amazon that’s an L-shape, because he has difficulty with wrist rotation. This allows him to scoop directly into his mouth without rotating his wrist.
For parents reading this, we found last year that my husband and I never had time alone to talk about stuff and make decisions. We wanted to talk in private; we’d say, well, tonight is a sibling dinner. They can talk about school and friends, and we won’t listen to them. They can talk about private stuff, and my husband and I talk about stuff and they don’t listen to us. That really helps us.
Some days we eat together; other days, the boys eat while watching a movie. We decide as a family if Mommy and Daddy want to have an alone dinner. If we do, that’s fine. They can watch TV.
6:30 p.m. TV time
After we eat, we love watching “Survivor.” We’re watching the Turkish one right now, but we also watch it on Netflix in other countries, like Spain.
If we don’t watch “Survivor,” we play a family game. We love playing games like Yahtzee, Monopoly and Uno. Omer is competitive, and he always wins!
And we created a new game to build social skills. It’s really good to teach kids: What would you do in this situation? It gives you a very difficult situation. Let’s say your friend came to you with a rip in her skirt and can’t go back to her classroom. What would you do to help her? The “jury” for that round picks the best answer. I was doing the CVI club when I was on campus at the CVI Center, and our kids really liked it. I go in and write a bunch of scenarios on a Google doc, then I print them, cut them in squares, put them in a bowl, and they pick one
On Saturdays, for fun, Omer goes to his power soccer team. They play soccer in power wheelchairs. His brother has soccer practice three times a week and games twice a week, and sometimes we’ll watch a game.
8:30 p.m. Bedtime
We go upstairs around 8:30. Omer needs support brushing his teeth and getting dressed for bed. Then he listens to an audiobook every night for half an hour to 45 minutes. He loves the “I Survived” series, “Goosebumps,” and “The Magic Treehouse.” He listens on Libby, because he doesn’t like robotic voices—Libby narrates with real people, with real emotions.
9:15 p.m. Goodnight
Omer takes melatonin and magnesium supplements for sleep every night. I think those help him sleep better—but he’s never been a good sleeper.
Routines, and doing everything in the same order, help: Eat dinner, play a game, go upstairs, brush teeth, listen to audiobooks. I also sometimes use lavender essential oil to help him fall asleep; that smell reminds him of when he was little, so we still use it. He asks for it now: “Can I get some lavender, Mommy?” And he still uses his lovey, a little 10-by-10 blanket that he’s had since he was born.
10 p.m. Downtime
My husband does bedtime, so I can get some time for myself. He does the nighttime routine, and I do the morning routine. For the 30 minutes when he’s putting the boys to bed, I relax on the couch, watch my shows, play with my dog. And, luckily, I’ve always been a good sleeper.
Read more about Omer and Burju’s story, the link between cerebral palsy and CVI, and visit their cafe, Sip of Joy, next time you’re in Boston!
