The Unknown Voice in the Family: A Lifetime of Being — and Working With — Glass Children

"If you don't ask, you don't find a problem." Louise Heck was 18 months old when her sister Carson was born with a significant disability — she's never known life without her. Now a social worker who runs sibling support groups, Louise brings both lived experience and clinical insight to this conversation about parentification, guilt, and the anxiety of caregiving that may outlast her own lifetime. She also opens up about becoming Carson's legal guardian at 30, after losing both her parents in a car accident, and the day she went into labor during a guardianship meeting for her sister.  More about Louise: Louise Heck LCSW-C is a licensed clinical social worker who provides clinical social work services to the families of children with developmental disabilities and severe behavior problems on a 16-bed inpatient Neurobehavioral Unit(NBU) at the Kennedy Krieger Institute. These services include conducting psychosocial assessments, providing supportive counseling to the family throughout the admission which are typically 4-6 months, and working closely with community agencies to facilitate appropriate services for a safe discharge.   Louise is a native Baltimorean but started her career in New York City in 1983 working for a foster care agency as a caseworker. While working full time she obtained her Masters in Social Work-Clinical, at Hunter College School of Social Work, One-Year Residency Program in 1989. She then took on the responsibilities of supervising 5 caseworkers in the same agency until thespring of 1991, when she and her husband relocated back to Baltimore.   Wanting to be back on the frontline, Louise worked as a Clinical Social Worker: UMMS; Neonatal Intensive Care Unit (NICU) assessing family psychosocial functioning and coping in relation to having their child in the NICU and providing referrals for follow up. While there she received training in Family Systems Therapy at the Family Therapy Practice Center Externship Program, Washington DC.   In 1993 Louise came to the Kennedy Krieger Institute Department of Social and worked in their outpatient mental health clinic. Including a few months on the NBU, she provided mental health evaluations and psychotherapy to children, adolescents, adults, and families referred to the clinic.   In 1998 Louise returned to NBU and has been working there ever since. In 2001 Louise received training in SibShops from Don Meyer which was not only clinically important to her practice but to her personally. Louise has a sister 18 months younger than her who has severe intellectual and physical disabilities. The experience of siblings that led to SibShops and on line resources strongly resonated with her. Currently she is a member of the online group SibNet, Maryland Sibling Network, and Sibling Leadership Network. She assisted in organizing and running the first MDSibs 2015 a statewide conference for siblings of developmental disabilities and others interested in sibling issues in Oct 2015. She has also given a presentation on Siblings of People with Disabilities – the Missing Piece to her work colleagues.   Louise lives in Baltimore City with her husband and two sons, 26 and 28. She has also been the guardian for her sister since December of 1996. Her sister lives close by in a small group home. Louise special interest include continuing to develop and provide services for sibling of people with disabilities, advocating for services for people with disabilities, and developing a mindfulness practice to assist others in coping with everyday life.   For more information about Kennedy Krieger: https://www.kennedykrieger.org/about-us For more information about SIbShops - where Louise received training- and how they support siblings of kids with disabilities and: https://siblingsupport.org/sibshops/ And for more information about The Glass Child: www.theglasschild.com Help us help you by joining the conversation: https://www.facebook.com/share/g/17WvZCrTNQ/