Moving to a new state or town can be a big change for any family. For father and caregiver Avram, it was even more challenging because he and his wife, Monica, were moving for their son, Kalel, who is living with Hunter syndrome. The decision to uproot their family and move from Florida to California was not easy. They knew they’d be leaving friends and their large, extended family behind. But it was something they knew they had to do to ensure Kalel was getting the specialized care he needed.
A family that sticks together
Once they’d made the decision to move, Avram and Monica faced the difficult task of explaining it to their children, family, and friends. They knew that the news would be hard for everyone. Avram comes from a large but tight-knit family. He’s one of 20 cousins—and is close with every one of them. How would his children feel knowing they would be thousands of miles from their cousins and friends?
Their decision to move also happened very quickly, so there was little time to prepare. Avram and Monica first told their children. Kalel is their oldest and most outspoken. Logan, their middle child, is wise beyond his years and helps Monica and Avram take care of Kalel. Avram and Monica also have a daughter Anaya, who was born after they moved. They consider themselves a family of superheroes who band together when things get tough. Avram and Monica explained that the move was part of the family’s mission to continue to find the specialized care Kalel needs.
Kalel at first didn’t understand the concept of moving to a new home—let alone a new state. Because of his condition, Kalel’s cognitive function isn’t the same as other children his age. He didn’t get that his cousins, who lived down the street, would now be hours away. He just took it as another adventure.
Logan, who was 5 at the time, took the news the hardest. He would have to leave behind all his friends at school. But once Avram and Monica explained their “mission,” Logan understood and was eager to support his family.
He said, ‘Dad, I’m sticking with my family. As long as we’re a family, we’re going to continue to be happy.’ It’s so hard to keep from crying in front of your kid who thinks you are a superhero.
Avram was amazed by Logan’s resilience and maturity. He knew the pain the move was causing his family, but he was overcome with emotion when they responded with love and support.
A new chapter begins
Because the move to California happened during the COVID-19 pandemic, Avram and Monica decided it was safest to drive across the country. Plus, like Kalel, they viewed it as another adventure for the family.
We jumped in the car and drove for 5 days to California. It was a good way to enter this new chapter of our lives.
The original plan was to stop along the way to show the kids famous landmarks or tourist attractions, but because of the pandemic, many of those places were closed. That meant long stretches of time in the car.
Spending a long time in the car came with challenges. Even if it’s a short ride, Kalel tends to get restless. To help keep him occupied and entertained, Avram made sure there were plenty of games and videos for him to enjoy. But even with those distractions, Avram and Monica still made it a point to pull over and take plenty of breaks along the way.
Adjusting to a new home
After the long but thankfully uneventful road trip, Avram and Monica knew it would take time for Kalel and his siblings to adjust to their new life and school. Fortunately, they had prepared before the trip to make the transition as easy as possible for everyone.
Avram reached out to Kalel’s new school to ensure they had a special education program in place. Every school may have a different type of program, and Avram wanted to make sure that Kalel was getting consistent care and education. That also meant making sure that his Individualized Education Program (IEP) was transferred to the new school.
With time, Kalel adjusted to his new surroundings. Kalel and Logan attended the same school, which was comforting for them and their parents. Kalel’s infectious personality also helped. His big smile and energy have made him famous among his classmates. Even Logan made a best friend, something Avram said he never had back in Florida.
I feel like my kids are famous in school. Everybody knows them, and that’s mostly because of Kalel. He walks around giving everyone a high five or fist bump.
Working with a new healthcare team
Because Hunter syndrome is so rare, it can be challenging to find a healthcare team that has experience treating it. When they were living in Florida, Avram and Monica had to do a lot of research and work with Kalel’s healthcare providers to help them better understand the condition. Fortunately, their new healthcare team in California specializes in rare conditions like Hunter syndrome.
They made us feel secure and gave us a checklist of which specialists to see. They made sure that our i's were dotted and t's were crossed for everything.
Avram also made sure all of Kalel’s medical records were organized and ready to share with his new healthcare team. Organizing everything beforehand allowed Avram and Monica to focus on setting up their new home.
Seeking support near and far
With the kids’ school and Kalel’s healthcare team in a good place, there was one thing missing: the support of nearby people who are familiar with Hunter syndrome and the challenges it brings. Back in Florida, Avram and Monica had such a support system in place. They could turn to family and friends to help watch Kalel and his siblings, or simply to talk, because these people understood what they were going through.
Avram and Monica did connect with other families in their new city, but it wasn’t the same as in Florida. They found it difficult to explain Kalel’s behavior. He can be impulsive—you never know when he might act out. Most of the time it’s coming from a good place, but when others don't understand Kalel's condition, it causes a lot of stress and anxiety for his parents.
So even though their extended family couldn’t be there physically, it was important for Avram and Monica to maintain communication. When they first moved, it was tough. The time difference made staying in touch difficult.
It felt like the stock market—you look at something that goes up and down. That's how our communication went. But even if I didn't talk to them for 5 years, it's the type of bond where we pick back up right where we left off. That’s just the type of family that I have.
It took some time, but everybody made an effort to make it work. Avram’s extended family—cousins, grandparents, nieces, and nephews—even flew out and visited them in California. His family understood how hard it can be in a new place with no family, and they wanted to support Avram, Monica, and the children in any way they could.
Moving 3,000 miles away has come with many challenges, but through it all, Avram and Monica have learned that no matter the distance, the bond with their family will always remain strong. And that’s made all the difference for Kalel.
Five tips Avram recommends to help prepare for a big move
Create a to-do list
Try thinking of all possible scenarios and prepare for them by making a list. Do movers need to be hired? How long will the actual move take? Have you reached out to the new school? Do you need help with packing? Do you need to schedule any meetings with your child or loved one’s current school?
Organize your child’s medical records and information
It may take a lot of time putting this together, but it’s important to make sure your child's new healthcare team is ready to go. Remember to contact your insurance company to make sure any new healthcare providers are still in your network, too.
Reach out to family and friends for help
Avram wouldn’t change anything, but he recognizes that this move was especially challenging due to Kalel’s condition and need for constant supervision. If possible, consider reaching out to family or friends who can help watch your child. That way you can focus on packing and the move itself.
Look into special education programs in your new location
Try to find as much information as you can about your child’s new special education program. Consider joining a social media community to see if any other families have information or can help.
Make sure your child’s IEP is up to date
Before you move, make sure you meet with your child’s current school and go through their IEP. It needs to be up to date to be passed on to the next school. There were delays in Kalel’s transition to his new school because of a few minor wording issues.
Tagged in: Caregiver, moving, community, relationships, support, life changes
