While the craziness of a return to school may be stressful, for many caregivers and parents of kids with special needs, it represents a return to normalcy. That means a return to care and routine that they depend on, which is often tied to school schedules and disrupted by summer vacation.
No matter the time of year, the struggle to keep up with these routines can lead to what is known as caregiver burnout.
Rory and Mark Lawrence are mother and father to Hugo and his twin sister Grace, while also being full-time caregivers for Hugo, who has cerebral palsy.
“Hugo just got home from school, and he’s been in his chair for a while,” Rory said. “So we just want to get him all unbuckled, he also gets fed through a feeding tube.”
Rory says it’s not always easy to find activities that the family can do together. While they must ensure round-the-clock care for Hugo, who is largely confined to his chair, they must also focus on making sure that Grace, who loves physical activity, has ample opportunity to thrive. She participates in Ninja Warrior competitions, and Mark constructed a course for her in the backyard so that she can practice for events across the Northeast.
“All of us as a family … to be honest, that can be kind of tough sometimes,” she said, “trying to find activities that work for Hugo, but also for our daughter, who is really active and does different sports.”
This week, the family is preparing to take its first vacation together to Florida — something Mark says the whole family is sure to enjoy.
“Grace loves swimming, she loves going in the pool, and Hugo does love floating in the pool in a raft and the place we’re going has a pool,” he said. “So that’s a perk for everybody.”
The vacation is timed because of a two-week gap between Hugo’s summer program and school, eliminating daytime care that the family depends on.
“Just to give ourselves a week where we weren’t trying to juggle working from home, and taking care of him, making sure he’s also entertained and has what he needs,” Rory said of the timing.
Rory is part of the team at David’s Refuge, an organization that works to support caregivers through mental health support and retreats designed to give caregivers a break. Executive Director Kate Houck says the constant responsibility takes a toll on families like the Lawrences.
“Sometimes we see caregivers who are actually suffering from physical and mental strain, loss of relationships and social isolation,” she said. “We also see the signs of withdrawal from the things they used to love doing.”
She says that isolation and dedication to a loved one often stops people from taking the most important step in caring for themselves.
“The main source of help that we really recommend is just that: Reach out and tell someone what you’re going through,” she said. “None of us are meant to do this alone.”
Lawrence says for her, that means leaning on her husband, and leaning into the joy that her kids bring.
“He [Hugo] has made us look at life in a completely different way and appreciate all of the simple small moments,” she said. “He said ‘mom’ on his device today, so that’s always pretty exciting thing, but I think the mental and physical exhaustion to go along with it are pretty big.”
Houck says David’s Refuge encourages caregivers to check in with themselves and take the following three steps to combat that exhaustion:
- Reach out for help.
- Set aside time for yourself every day, even if it’s only a few minutes.
- Find ways to feel empowered and seek out information when you are feeling overwhelmed by what the coming days may bring.