Brianna Neal, MSW, LSW, Care Services Coordinator – Social Worker
Parental illness or illness of a loved one can be as traumatic to a child as it is to the individual experiencing it. With the prevalence of chronic diseases continuing to increase, we can expect the number children affected by parental illness to increase as well.
The illness of a parent or loved one can affect the emotional, social, and behavioral development of children. Most families want to protect their children from the news of hearing that their loved one has a terminal illness. While there is no right or wrong way for you to discuss this topic with your children, it is important to understand that there are resources to support you in this.
ALS United Greater Chicago strives to support individuals impacted by ALS and their families. We strive to create programs to support you and your loved ones through every step of your ALS journey. With our newly revamped website we are pleased to announce that we have a dedicated resource page specifically for children impacted by a loved one battling ALS.
The newly designed page “Children Need Support Too” serves as a guide to help children in navigating the emotional, social, and behavioral changes they may experience while their loved one battles ALS. It provides age-appropriate PDFs, counseling resources, and books to help them understand ALS and its impact on their loved one. These resources aim to support and prepare children for the effects of ALS, offering valuable guidance throughout their journey.
As we continue to refine and enhance this webpage resource, we aim for it to become a valuable tool for families navigating their ALS journey. In the meantime, here are some helpful resources I’d like to share with you…
Books, Toolkits, & Resources
- And Love Speaks: Helping Children Understand ALS book by Jamie L Blair and Elie James Wile for ages 5-10.
- But She Still Can Love: A Child’s Understanding of ALS book by Amalia Flecksteiner and Maggie Horton for ages 5-10.
- Wonders & Worries is a free service that supports children and adolescents ages 2-18 dealing with serious illness from parents and loved ones. They offer a collection of online resources for parents and children. Explore at: wondersandworries.org/resources.
- Toolkit to Help Educators Support Children of Parents with Serious Illness was put together by Massachusetts General Hospital’s Marjorie E Korff Pact Program: Parenting at a Challenging Time. Read at: https://bit.ly/3JaLKQW.
Organizations
- Global Neuro Ycare is a specialized day-long training designed for young caregivers, offering hands-on skills and knowledge through sessions led by a diverse team of health care professionals. It aims to build a supportive peer network and enhance caregiving capabilities in a dynamic and engaging setting. Learn more: globalneuroycare.org
- Hope Loves Company provides emotional and educational support to children and young adults who had or have a loved one impacted by ALS. They have a network of online and in-person gatherings across the US. Learn more: hopelovescompany.org
- Winning with ALS offers grants and support for families with children who are living with a parent diagnosed with ALS. Learn more: winningwithals.org/about
- Barr Harris Childrens Grief Center, part of the Chicago Psyhoanalytic Institute, offers support in specialized services provided in Downtown Chicago and Evanston for children and adolescents ages 5-18 and families who have experienced a significant loss such as the loss of a parent, caregiver, sibling. Learn more: chicagoanalysis.org.
- Catholic Charities offers comprehensive counseling services to residents of Cook or Lake Counties. Spanish and English services are available online or in-person and flexible payment options are available. Reach out to the intake line at 312-655-7725 or email counselingintake@catholiccharities.net.
- The National Alliance for Grieving Children consist of dedicated professionals willing to support children who are grieving and connect with communities and organizations to better support children. They have a list of programs and grief centers that can be found by state. Learn more: nacg.org.
Supporting the Unsung Heroes: Children and Youth of ALS Warriors
ALS United Greater Chicago invites you to watch the next installment of our Living Well with ALS series. This presentation is designed to provide crucial support and resources for young individuals impacted by ALS within their families.
Recognizing the significant challenges faced by children and youth who have a loved one battling ALS, this presentation offers a range of tailored resources to address their emotional, social, and practical needs. The aim is to empower these young individuals, equipping them with the tools and support necessary to navigate the complexities of living with a family member affected by ALS.
Dr. Melinda S. Kavanaugh, PhD, MSW, LCSW, is a seasoned clinician and researcher specializing in neurological disorders such as Huntington’s disease, Amyotrophic lateral sclerosis (ALS), Parkinson’s disease, and Alzheimer’s disease. Her translational research focuses on youth caregivers, conducting studies in the United States and South Africa. In the U.S., she led a national study on ALS caregiving youth, resulting in the development of educational materials for affected families. In Milwaukee, she received NIH funding to study Alzheimer’s caregivers in minority communities. Dr. Kavanaugh’s international work includes a capacity-building project in South Africa, collaborating with Stellenbosch University and the Motor Neuron Disease Association. She also teaches courses in social work and co-leads interprofessional workshops on healthcare. She created the care and support programs for youth “YCare”, written several books for youth and families and developed collaborations around the world adapting and translating her books and programs.