Recently, Kristin Boggs, Executive Director of the Alabama Schweitzer Fellowship, spoke with Kaye Culp to discuss her 2020-21 Fellowship project. Kaye described how she is using her experience both as a parent and a student in the Masters of Counseling program at the University of Montevallo to inform her program.
Her program is in partnership with Cahaba Medical Care, a medical clinic with 17 centers across four counties in Alabama, whose mission is “to be an incarnation of love, peace and justice by guiding our patients through their journey toward physical, mental and social well-being, and to be a center for transformational medical education and primary care training in a rural and international context, modeling and exhorting the next generation of medical professionals in a career of excellence, conscientiousness and compassion”. Due to COVID, however, Kaye’s project is accessible to individuals throughout the state of Alabama.
I don’t consider myself to be an expert on others’ journey but I believe that everyone’s adventure through life can benefit from having a safe space to express their emotional ups and downs.Kaye Culp, 2020-21 Alabama Schweitzer Fellow
Read on to see how she is using this unique opportunity to meet the needs of caregivers of children with disabilities.
Why did you decide to develop your particular project?
Parenting a child with special needs is hard. A person can feel very isolated from others. We tend to rely on other people as our support system – friends, family, and churches – so it’s disappointing when we don’t always receive the support we need. Parents of children who have special needs are able to connect instantly with another parent because they know our world. Our oldest daughter has autism and is non-verbal. She is twenty years old and provides us with both joy and challenges. It takes another parent to truly understand the joy of our daughter saying the word ‘blueberry’ while pointing to the blueberry yogurt; and understanding that sleepless nights and exhaustion are part of being a parent.I understand the challenges of medication changes, IEP’s, and doctor’s visits. I know what it’s like to be filmed while my adult daughter has a meltdown in public and to be accused of being a bad mother. I know the thrill of watching connections take place and the gain of skills and independence. My project involves bringing parents together to support each other while we address common challenges as a group.
It’s now September and schools are back in session in a variety of formats. What are the special considerations that families whose children have disabilities are thinking about at this time?
At this point in the school year, most parents are worried about virtual learning, sensory issues with masks, or concern due to their child being medically fragile. The mask debate is a concern. There are some populations, such as my daughter, who cannot learn virtually. If she were to return, I’ve been told that her para would need to wear full PPE and I worry that would upset my daughter to the point of self-injury (biting herself). For other populations, including dear friends of mine, returning their child to school would be against medical advice; one of the parents ultimately decided to quit their job and stay home. For others with younger children, the use of masks prevents their children from learning facial expressions for the majority of the school day.
How does your project seek to help these families address the needs, particularly in light of COVID?
Covid has definitely caused upheaval in the lives of parents who have children with disabilities. Due to the role of caregiving, many parents aren’t able to leave their homes. They cannot leave their child home alone and their child may not be capable of wearing a mask. I’ve heard from many parents and friends who have felt isolation during this time. Regression of skills and academics has occurred. My project addresses the emotions of caregivers, including the frustrations caused by covid. As well, I can assist with advocating for their child in their school system. I’ve told parents that schools are struggling as well. Teachers are experiencing a great deal of uncertainty during this time. This is new territory for us all. If parents are interested, we can develop creative solutions alongside their child’s teacher to address IEP goals.
If people are interested in participating in your program, how should they sign up?
I love talking to parents, even if they’re not certain about participation. I can be contacted at firstname.lastname@example.org . I will be directing more than one group to allow a variety of times. I understand the concerns that parents and caregivers may have about taking the time out to attend. We will figure something out.
As you graduate from the University of Montevallo College of Education’s counseling program, where do you see yourself following that time? What type of work are you hoping to do?
Upon graduation, my hope is to continue working with families who have children with disabilities. I have twenty years of experience in advocating for others, teaching others to advocate for themselves, and working through the complex emotions of being a parent. I don’t consider myself to be an expert on others’ journey but I believe that everyone’s adventure through life can benefit from having a safe space to express their emotional ups and downs.