Support for Patients & Caregivers
Our focus is on the best quality of care and the highest quality of life for all members of the child neurology community. Below you’ll find information and resources for patients, caregivers and families.
CNF offers programs, initiatives, and annual projects reflect our mission: To serve as a collaborative center of education and support for children and families living with neurologic conditions. Visit Our Programs page to learn more about our current offers and programs.
Care for the Caregiver
In coming to terms with a diagnosis of a neurologic disorder, parents and caregivers may experience:
- Shock, denial and disbelief
- Anger and rage
- Stress and depression
- Grief and fear – for your child or for the family as a whole
- Acceptance and adjustment – the realization that a lot can be done to improve the situation
- Fight and hope – the optimism that comes from dealing with challenges and seeing positive progress in your child. Your culture and your religion or beliefs background also may be a source of support for you at this time.
Following a child’s diagnosis, it is important for caregivers to talk about feelings and emotions with trusted people. They can be supported by family, friends, professionals or other caregivers in the same situation. Managing the daily care of your child is very demanding. It can have an impact on your relationships with your partner, other family members and friends.
The CNF Family Support and Empowerment Program (FSEP) offers families a direct connection with an experienced, compassionate Peer Support Specialist to help navigate the journey of disease diagnosis, treatment, and management for a child living with neurologic condition.
Along with offering relational support, CNF Peer Support Specialists seek to empower families by sharing sound information and helpful resources. Each Peer Support Specialist receives comprehensive training about the needs of the child neurology community and ongoing mentorship as they start connecting with families.
If you’re a parent, receiving a diagnosis for your child that is life-changing can shake you to your core. Having a safe place to explore feelings of “this is not the way it’s supposed to be” is what FSEP is all about. Sharing the emotional process that often comes with a new diagnosis or living with a neurologic condition, with someone who has also experienced these feelings, can be helpful to many families. FSEP’s Peer Support Specialists are trained to listen to you along this emotional journey without judgment. In addition, you will be provided with accessible resources from CNF and/or our trusted partners.
FSEP was created so that no parent or caregiver in the child neurology community ever walks alone: “We would be humbled and honored to walk with you on your journey.” Connect with a Peer Support Specialist today.
Please note: Peer Support Specialists are not medical providers. Support from FSEP is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your neurologist, physician, or other qualified health provider with any questions about or related to a medical condition. CNF assumes no responsibility for any injury arising out of or related to any use of FSEP and related information or for any errors or omissions.
You may find this article from the Center for Parent Resources and Information helpful: You Are Not Alone – For Parents When They Learn Their Child Has a Disability
This video, “What has your experience as a parent of a child with special health care needs been like?” was developed by the National Center for Medical Home Implementation (NCMHI). The NCMHI is a cooperative agreement between the Maternal and Child Health Bureau and the American Academy of Pediatrics with a mission to ensure that every child and youth has access to a medical home. For more information, visit the National Center for Medical Home Implementation.
There are many things you can do to cope with stress:
- Take a break to recharge yourself or ask for help.
- Give yourself time each day —10 minutes or more — to do something you like.
- Set a limit on how much time you will spend looking or reading through the large quantity of information available to you.
- Don’t feel you have to look for everything at one time.
- Tell your child’s doctor how you are doing. Ask him or her to help you focus on what is most important.
- Share your feelings with your family, friends, other parents, doctors, and nurses.
If you feel that you have reached a real crisis point, it may help to:
- Join a local support group or to spend time with other caregivers who have children with additional needs. They may have found ways of dealing with issues that you find particularly stressful.
- Contact FSEP
- Call a support line. Many voluntary organizations provide a free helpline to assist you in getting through difficult times. Contact details for these and other support organizations are found in our Disorder Directory, as well as on our Partners page.
- Contact your doctor, who may provide contact details for your local counseling service.