Family Involvement
If you live in the Charleston, Greenville or Columbia area and are interested in participating in a Family Panel Discussion or Family Mentorship Project, please contact:
Karen Irick
SC LEND Family Faculty
(803) 429-8924
Family Panel Discussion Series
The Family Panel Discussion series provides interdisciplinary trainees with the opportunity to learn directly from families of diverse cultural backgrounds with children or young adults with Autism Spectrum Disorder or other related neurodevelopmental disabilities.
Panelists are compensated for their service and are generally composed of parents and/or other family members such as siblings or grandparents.
Self-advocates or people with neurodevelopmental or intellectual disabilities also serve as panelists.
Trainees have the opportunity to ask specific questions of panel members about the day-to-day aspects of living with a disability. Their questions include inquiries relating to but not limited to:
Time of diagnosis;
School experiences;
Access to health care;
Family support; and
Community or social support
During the SC LEND year, each family shares with trainees during the panel discussions, what it is like, in their own personal experiences, to care for a child or young adult with a disability or special health care needs. Self-advocates or people with Autism Spectrum disorder or other related developmental disabilities also share their experiences of living with a disability.
Trainees will have the opportunity to hear your story. You tell them about the challenges and triumphs of daily life, your family’s strategies for accessing services, coping with stress, advocating on behalf of your child or yourself, incorporating medical and therapeutic interventions into everyday activities, and enjoying recreation or leisure activities.
"I felt that the second family panel experience was incredibly moving and just as valuable as the first. All of the panelists were mothers of children with various disabilities and I feel like I gained more insight about their children's experiences in settings such as school and the community. If we had more time, I could have listened to these individuals share their stories all day! I think the family panel experiences were a fantastic way for us to understand some of the most important needs of individuals with disabilities and their families. In my work on physical activity promotion/obesity prevention, the family panels reminded me that while physical activity promotion may be important, there are other larger quality of life, educational, etc., issues that may need to be addressed first.”
Exercise Science Public Health Trainee
“Attending the family panel at the Nurturing Developing Minds Conference in Greenville was both eye-opening and humbling. I appreciated what the panelists had to say about their respective experiences. Some of the key points I took away from the panel were as follows: parents of children with special healthcare needs often dealt with guilt and having to navigate a system that is complicated and fraught with frustration (oftentimes alone); there are many times when parents may know more about their child's diagnosis than their general pediatrician; parents of CSHCN greatly appreciate any assistance with community resources and navigating the education system. Overall, I was impressed by how resilient and strong the panelists were; they were great representatives of the CSHCN community, even if their individual experiences were unique and did not represent every parent's general experience.”
Developmental-Behavioral Pediatrics Fellow
Family Mentorship Project
Provides interdisciplinary trainees with the opportunity to learn directly from families of diverse cultural backgrounds with children or young adults with Autism Spectrum Disorder or other related neurodevelopmental disabilities.
Families from the surrounding areas of Charleston, Greenville, and Columbia serve as Family Mentors and are compensated for their service.
Trainees learn directly from families through extended interactions and experiences that take place in the family’s home, medical settings, and their communities.
The program features the family as teacher. Families impart critical knowledge about the day-to-day aspects of living with a disability beyond what can be achieved through classroom requirements for a degree or certification.
During the SC LEND year, each family shares with their designated trainee what it is like, in their own personal experiences, to care for a child or young adult with a disability or special health care needs.
Trainees serve as participant observers with their mentor family to study the challenges and triumphs of daily life, the family’s strategies for accessing services, coping with stress, advocating on behalf of their child, incorporating medical and therapeutic interventions into everyday activities, and enjoying recreation or leisure activities.
Trainees will serve as participant observers on two occasions—one time in either of the following areas: home, school, community, and a therapy session.
“It was a pleasure and honor to know that my family’s daily activities could enhance the knowledge of a future provider. I feel that we’ve made a lasting connection.”
Parent
“Our trainee was such a pleasure to be around! This program is so wonderful! Any opportunity I can get to teach anyone about ASD is time well spent and I love the fact that this opportunity is available for young professionals to understand life with ASD a little better.”
Parent
“I thoroughly enjoyed the family mentorship experience. Understanding how to care for a child with a developmental disability is better understood when you are able to see the child in multiple settings.”
Occupational Therapy Trainee
“The Family Mentorship Project is a truly rewarding experience to be a part of. My favorite interaction with the family had to be when we were at the child’s IEP meeting and mom was just elated throughout the entire visit.”
Genetic Counseling Trainee
