When Caregivers Need Care: Finding Support at Easterseals' Retreat Yourself

It’s no shame to admit that caregiving can be an overwhelming job—but it is also immensely rewarding. Whether caring for an aging loved one or a disabled child, caregiving grants independence and stability throughout the constant changes disabled individuals may encounter throughout their lives.

For Carissa Cote, her job as a caregiver began with her daughter. And as Cote grew into this role, she wanted to learn how to best help her child. This led her to seek assistance from her therapist, who helped her discover the support and resources of Easterseals Serving Chicagoland and Greater Rockford.

“I just found out about my daughter’s diagnosis, and I was feeling really overwhelmed,” Cote said. “I asked if anybody has any resources because I very much love learning more about different things like autism and ADHD. I wanted to learn more about how I could help my daughter.”

Using information Cote’s therapist provided, she reached out to Easterseals Serving Chicagoland and Greater Rockford. She explains that after a fateful meeting, she bonded with an Easterseals employee who also has an autistic child. Through these interactions, Cote not only received helpful caregiving advice, but was also introduced to the Retreat Yourself event. She notes that the trip was healing for someone who always needs to attend to her disabled children.

Providing Rest and Connection

Retreat Yourself at Easterseals Serving Chicagoland and Greater Rockford is an annual weekend-long getaway for mothers, grandmothers, and aunts who help raise a child with a developmental disability. It's a chance to connect with others who understand the unique joys and challenges of the caregiving journey—all in a peaceful, supportive setting. Attendees enjoy a variety of activities including massages, Reiki healing, tarot readings, a white elephant exchange, movie night, and a Saturday bonfire with s'mores. The retreat focuses on providing mothers space to rest and connect with others before returning home refreshed to their families.

“It was so rejuvenating to be able to sleep uninterrupted,” Cote said. “[Retreat Yourself] starts their activities around 9 AM, so I can sleep in, which is fantastic. All the moms get together, and we do fun activities like Zumba, listen to special speakers, have a campfire, a movie night with movie trivia, and have some downtime to talk to other moms who are in the same situation.”

The role of a caregiver can be isolating, especially when so much of your time is devoted to others. With Retreat Yourself, Cote found a sense of community. With her daughter’s diagnosis of autism, she notes that “she can pass as neurotypical,” which means she frequently masks in social situations like school. Cote explains this results in her daughter needing to “let out” her emotions when home, often in front of or directed at Cote. The Retreat Yourself event provides a place for caregivers to find like-minded individuals, as well as feel their own emotions toward occasionally difficult situations.

“It’s hard as a [caregiver] to find time to let yourself fall apart,” she said. “For me, it was nice being able to get away and talk to other moms who have those same experiences with their kids. I feel like I have imposter syndrome because if people don’t think [my daughter] has [autism], am I really struggling? And [the mothers] were like ‘No, this is very much real. This is something we all go through.’”

For Diane Martin, Easterseals has been assisting her son since he was two years old. Through speech, occupational, and physical therapy, Martin notes that Easterseals’ services have benefited her son, as well as helped her with caregiving. Martin learned of the Retreat Yourself event through speaking with another caregiver within The Autism Place, encouraging her to attend not only to rest, but to meet other caregiving mothers. Martin, like Cote, appreciates what Retreat Yourself does in terms of building community, and more importantly, rejuvenating oneself.

“[Retreat Yourself] is a place where I can go to be taken care of,” Martin said. “In my daily life, I’m swamped. I have two kids on the spectrum, and I have a third currently being tested. All I do is run for them—therapy, doctor’s appointments, whatever thing they need. And the Retreat group is the one place I go to be taken care of.”

Caregivers frequently sacrifice their own health, whether physical or mental, to ensure their loved ones can thrive. This can be isolating, especially when discussing moments with those who aren’t caregivers. Martin notes that the Retreat Yourself event offers unique opportunities to build connections with those with similar lived experiences. While she tends to keep to herself outside of the Retreat, Martin explains that speaking with and learning from other mothers is not only soothing, but immensely gratifying.

“You can sit down at any table, whether during craft night or movie night, and you’re understood,” she said. “The other caregivers, the moms that were there, the compassion we have for one another, there isn’t any other place in the world where you can feel like when you walk into the room, everyone is family. I think this is because of the connections we all have for what we do daily.”

From outside perspectives, being a caregiver is often viewed as inspirational. Yet, conversations fail to explore the physical and emotional tolls they can have on someone, especially parents. This isn’t to say that caregivers are not willing to provide for their loved ones. On the contrary, many caregivers, especially parents, willingly sacrifice so much to ensure their children can survive and thrive in a world not built for them. This is why Cote and Martin push themselves during long days and nights to keep their children safe. And as Martin notes, when caregivers are treated with love and respect, that love is then passed down to their children.

“Everything we do, as moms and caregivers, at the forefront of our minds is ‘What are we doing for our kids?’” she said. “Even though this Retreat is geared toward the caregiver, there are so many little things, like trinkets, fidgets, or snacks around, that those things are available. We all take them home and give them to our kids. It’s almost like our kids are so excited when we get back, because not only did they treat me emotionally, but they are also blessed with little treats and trinkets, something they are just as excited [about] as we are.”