TAKING CARE: Caring for our children requires lots of love and lots of patience. If you have a child with special needs, that care can also be challenging. Respite care providers can help you.

"Primary caregivers often don't realize just how stretched and stressed they are until they get a real break and can look back."

The Child Neurology Foundation (CNF) wants parents to consider respite care services as a trusted option that could benefit their child and the rest of the family. Developed with families, the popular Respite Care Notebook includes fully-customizable forms that bring together all information about a child and his / her needs into one place.

Respite caregivers can use that information to provide the best care for the child. We are sure you'd agree that caring for our children requires lots of love and lots of patience. If you have a child with special needs, that care can also be challenging, at times. Respite care providers can help you.

Families who have used respite care tell us that respite helps them "create a better balance" in their lives. Respite care helps parents take time for themselves, to be with their partner or spouse, or with their other children. Some parents pursue their own interests, with support from respite care. In a small survey of 17 families, one parent reported returning to work, and another parent said she went back to school –thanks to respite care.

Respite care can also be good for your child. "Respite caregivers have helped my son participate in fun activities," said one family. Respite care allowed another child to attend a weekend camp. Respite care can encourage friendships, build trust, and expand social skills. Respite care "is just as useful to our son as it is to us," reports a parent. "We get a chance to have a break and our son has a chance to meet new people and form other relationships outside his own family. Even though he is nonverbal and has severe and profound intellectual impairment, it is very obvious to us that he enjoys his time in respite care."

"Respite care expanded our circle of caring adults capable of providing high quality care for our son," says one mother. In case of an emergency, it can be critical to have someone to call whom you trust to care for your child. If you can't be available, respite care can step in.

The Child Neurology Foundation created the Respite Care Notebook for families who now use respite care services, and families who are thinking about respite care services. It is a tool to help guide the respite care provider in caring for your child. Some things to keep in mind:

1. Respite care can be used for a few hours, several days, or even longer.2. You decide how to use respite, based on your family's needs, services available, and coverage/costs.  3. You fill out the forms in the Notebook that apply to your child. Skip the forms that don't.

This notebook is designed with a two- to three-day respite in mind. You may find that some of the information we ask for isn't needed for shorter visits. For a longer visit, you may need to include more information, like how to restock the supplies, or how your child will be taken to school or therapy. Additional forms are provided with items to think about as you prepare for longer respite care visits.

You might find that the notebook also helps remind other family caregivers of changes in medication or routine. As you update forms, you might keep the old ones, and build a record of your child's care, growth, and use of respite services. We want this notebook to be useful for you, your child, and other families with special needs. As you become familiar with using respite services, we hope you will share your experiences with other families. If you need more information, or have questions or comments, email us at info@childneurologyfoundation.org.

Download the free, fully-customizable respite Care notebook childneurologyfoundation.org/respite-care

Above all, we know you may feel nervous letting someone else come into your home and care for your child. But please remember that caretakers need care too! As one family member told us, "Primary caregivers often don't realize just how stretch[ed] and stressed they are until they get a real break and can look back." We hope this notebook will help you create a complete plan for your respite care provider so that your mind can be at ease while you are away from your child. Visit the The Child Neurology Foundation at childneurologyfoundation.org

TAKING NOTE: The Respite Care Notebook includes fully-customizable forms that bring together all information about a child and his/her needs into one place.

HERE TO LISTEN AND HELP : THE FAMILY SUPPORT AND EMPOWERMENT PROGRAM

CNF was a finalist for a 2018 Eyeforpharma National Award in the Most Valuable Pharma Collaboration category – for collaborative work in developing a patient education initiative on respite care, which included our Respite Care Notebook. If you need someone to talk to, CNF's free 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 a neurologic condition. Connect today with a Peer Support Specialist today: childneurologyfoundation.org/FSEP CNF thanks GlaxoSmithKline for supporting the development and production of the Respite Care Notebook. CNF also thanks our advocacy partner, the Association for Creatine Disorders, for additional support of the Notebook production.