“When I actually got some sleep, it made a difference. It was a turning point because I could have more coherent conversations. And it wasn’t that I was doing horribly, because as a matter of survival, I was doing okay. But things clicked better for me so, that was the beginning of wanting to make sure I did that more often. I started to leave the hospital to go to the store sometimes, even if I didn’t buy anything. Just to get out of the building.” Said Elizabeth Bostic, Advocate for Children, Parents and Special Needs Families.
Self-sacrifice as a form of service, is a cultural norm we inherit. We often learn to work through exhaustion from our mothers and grandmothers. Raising kids is important. It’s also beautiful and exhausting, especially when they can’t be left alone. And millions of families have children who will always need 24/7 support. Caring for children with disabilities or complex medical needs, raises the stakes on what it means to keep your child safe. Also, to get rest and recovery time. Elizabeth learned first-hand how to do this, while caring for her son and now creates this support for others.
Self-Sacrifice is Risky
Elizabeth said, “no parent wants to be the reason why their child is in danger of not getting what they want or need access to. But if they’re not getting the breaks they need and they’re in cognitive overload, there’s a real risk of that happening.”
Parent stress was declared a public health emergency by former Surgeon General Dr. Vivek Murty. Women experience anxiety and depression at higher rates and most families feel the weight of increased stress. Yet, parenting kids with complex medical needs, it’s a different game altogether.
Breaks Are Essential
Elizabeth said, “The idea of respite, in many ways is considered a very American concept.” We discussed how infrastructure challenges for US parents, are exacerbated for parents of children with chronic conditions, disabilities or complex medical needs. She explained, “In other cultures, especially in those that honor and appreciate intergenerational cohabitation, they take care of their families. And that’s just the way it’s done. It never occurs to ask somebody else to take care of your child because that’s an imposition. It doesn’t change the fact that parents need breaks and that’s what’s happening, because it’s not framed that way.”
Especially Through Crises
Elizabeth said, “My son went into a medical crisis that resulted in 15 1/2 consecutive months of hospitalization in two different states. We ended up having to go to St. Paul Minnesota to get the surgery he needed, because we were denied coverage for it here in Massachusetts.” Millions silently parent kids with conditions that require ongoing treatments or hospitalization.
She explained, “I remember about 10 months into that journey, there was a social worker in St. Paul who I am convinced made it their life’s mission to get me to sleep someplace other than my son’s hospital room. I saw a clinical note later that said, ‘mom is exhausted and needs a break and we need to figure out how to get her to understand that, and actually do it.’”
Seek and Accept Help
Many people only see their own burnout in hindsight. Especially when it’s caregiver burnout, a slow erosion of mental, emotional and physical reserves. Elizabeth said, “One evening, I was in James’ hospital room as I typically was and they said, ‘we have a room for you at the Ronald McDonald House’ on the same floor. They offered this to me multiple times before. And I always said, ‘no I’m going to stay right here.’ Because my trust levels with the medical community were so low at that point but something in me changed.”
She found out which nurse would be on shift that night and when she learned it was someone she trusted, she finally said yes. “I think I threatened to find their first born if anything happened to my son and reminded them to call my cell phone if anything happened. I remember the room was dark, quiet, and I slept so hard I woke up the next morning and thought, wow! It was a tremendous learning experience and because of that one social worker, I came to appreciate respite and the fact it was necessary.”
Turn Pain into Purpose
Through this experience, Elizabeth was a single mom of two. She left her traditional career path to do special needs advocacy work for families to have flexibility. “I had many advantages growing up and knew how to advocate for myself. Even through the difficulties accessing the surgery my son needed and having to fight with insurance to force them to pay for it. So, I began to wonder what other families were experiencing.”
Although sadly Elizabeth’s son James passed away, the experience reshaped her life and career so, his legacy lives on in her work. “I thought, if I had this kind of difficulty even with my skills, what in the world is happening to other Black and Brown families or for that matter, White families who don’t have those skills? What is happening, as a result, to their children? So, I decided I need to shift my attention to get into the system and figure out how to change it.”
Build Your Case for Change
Elizabeth went back to school to attain the credentials required to get into the public health system. “I started to do research on why children with special health needs, and their families, could not access respite services. And that’s when I started seeing myself in some of the statistics. Over 60% of caregivers have to either stop working or change the way that they work and the vast majority of those are women.”
She continued to look for the right opportunity. “When I learned 80% of caregivers say caring for their child or parents affected their productivity at work, I realized it’s an equal opportunity issue. So, there was a way to convince somebody to help us to pay for this. Because if a person can’t work, they can’t contribute to the tax base for the services that are needed to support that person and that’s a real problem. So, that was the business case for what I did.”
Lean Into Your Creativity
When your child has complex medical needs, you can’t just ‘hire a sitter’ when you have an appointment or need to go in to work. Elizabeth said, “when I needed someone to take care of my child and I didn’t have my PCA, I often went to somebody else with a child just like mine. Because we spoke the same language. They knew how to do wheelchair vans, feeding pumps and transfers, everything I knew how to do. So, if I could create that network of two or three people who I could do that with, why not create a network for all families?”
That’s when the caregiver-to-caregiver respite network was born. To match up families of children with similar support needs. She said, “It’s not diagnosis specific because if you meet one child with Down syndrome, you’ve met one child with Down syndrome. If you have another mom who has a child with similar behavioral needs, they already know exactly how to take care of a child with those needs and they will.”
Go Big With Your Vision
Elizabeth’s idea became her academic capstone and later, a program. “If you don’t have the resources, you can exchange time. Like, I’ll give you 4 hours of respite if you give me 4 hours of respite. Every time I talked about it people said, ‘I can’t believe we don’t do that.’ A year later a grant came in to the state which gave us two years to pilot it. I worked with the federation for children with special needs and they brought my idea into reality.”
Find Your Community
Community can come in many forms, it can be local, digital, cultural, practical or built around a shared purpose. Elizabeth said, “We have a multicultural staff who speak 7 different languages and amazing things have happened! Parents were getting breaks, but they were also building a sense of community and weren’t feeling so isolated. The kids were actually developing relationships with other kids who got them, because they lived with similar issues. And fathers were developing relationships with other fathers.” Beautiful!
Many thanks to the talented Elizabeth (Beth) Bostic!
Learn more about Elizabeth’s private practice supporting parents with advocacy and the IEP process. And the critical work supporting families in the Division for Children and Youth with Special Health Needs at the Massachusetts Department of Public Health. Follow her great adventure on LinkedIn.
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About Elizabeth:
Elizabeth (Beth) Bostic is the Director for Division for Children and Youth with Special Health Needs at the Massachusetts Department of Public Health and a LEND Faculty Instructor and Fellow at the Eunice Kennedy Shriver Center at UMASS Medical School. She is also the proud parent and humble servant of King James, a medically complex young man.
Beth has an Executive MBA degree from Suffolk University, where she created the Caregiver-to-Caregiver Respite Network – a family driven respite solution that leverages the shared lived experiences of caregivers. She is a trusted and frequently requested facilitator of workshops and stakeholder meetings across the Commonwealth, known for her ability to facilitate candid conversations about special education, caregiver needs, disability rights and healthcare disparities among underrepresented and disenfranchised populations.
