From the Child Neurology Foundation

BDSRA is excited to share with you the Child Neurology Foundation’s Respite Care Notebook. Over the last year, CNF has worked with patient advocacy organizations, including BDSRA,  to build a comprehensive resource for families who are currently using respite care or are thinking about it for the future.

From the CNF website

Caring for our children requires lots of love and lots of patience. If your child lives with a special need, have you considered respite care? Families who have used respite care tell us that respite helps them “create a better balance” in their lives.

Respite care helps parents recharge, spend time with their partner, or with their other children. “Respite care expanded our circle of caring adults capable of providing highquality care for our son,” says one mother.

Respite can be a positive experience for your child. “Respite caregivers have helped my son participate in fun activities,” said one family. “…our son has a chance to meet new people and form other relationships outside his own family.”

The notebook is meant to be a place to put all of the information about your child that a respite care provider may need to know.

The sections include:

  • Getting to Know Us, a place for you to describe all the members of your family and some of your child’s needs
  • Medical Needs, this section is for listing medications, symptoms, what they should do in case of a seizure or other medical situation
  • Getting to Know our Child, here you can talk more about your affect child/children including how they communicate, what equipment they use, and their daily routine
  • Emergency Information, this is information you would want the care provider to take to the emergency room
  • Pages for short and long visits which can be filled out before each visit to give your care provider a daily update

Even if you aren’t sure you will be using respite care we encourage you to look through the notebook many parts of the book would be useful to have on hand to help your extended family and friends better understand your child and Batten disease.

You can access the Respite Care Notebook at The forms can be filled out online and then printed, or you can print and fill them out by hand.

here is no denying that technology has become a huge part of everyone, including children’s lives. There are thousands of games & education tools available to anyone with a smartphone or tablet. However, most of these apps can be difficult or impossible for visually impaired users to navigate. Below we have pulled together some resources for finding those that may work for our Batten kids who have vision impairments.

Braille Institute – ViA

ViA a fully accessible app that helps identify other apps that are useful for children or adults who are blind or have low vision, including those with