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 other disabilities. Users can sort through over 500,000 apps to locate those that are specifically built for users with visual impairments. Using a variety of filters you can narrow the search to find exactly what you’re looking for. Filters include search by low vision, voice over compatible, Apps for Kids, 26 different educational categories, and 13 different entertainment categories. – Our Favorite Apps for Children Who Are Visually Impaired

This website lists 15 apps for children who are blind or visually impaired, they break them into a few categories including stimulating the use of vision, honing fine motor skills, communication apps, and storytelling apps.

A few highlights from this article:

Bebot ($1.99):

“Bebot is a simple sound cause and effect app that makes funny synth robot sounds. Touch the screen and make the robot sing!”

Cause & Effect Sensory Light Box ($2.99):

“This is a really well made cause-and-effect app that creates sounds and lights when your finger is on the screen, then stops when you remove your finger. Perfect for children with low vision or CVI.”

Pocket Pond (Free):

“Listen to birds chirp and frogs croak in a peaceful pond. Touch the screen to make the water splash or just watch the koi swim by”

Paths to Literacy – 138 Apps for Early Learning for students with Visual Impairments

This extensive list is curated by a Teacher Consultant for students with deafblindness. She includes apps for a wide range of vision impairments that fall into many different categories.

A few highlights from this article:

I Hear Ewe:

“When a user taps on an animal or vehicle icon, the game will verbally announce what type of animal or vehicle it is and play a recording of its real sound”

Sound Drop:

“Draw lines and watch as Soundrop uses them to create music.”

Animal Farm:

“Children learn about animals by seeing and hearing the sounds an animal makes.”

Bereaved Batten parents Warren and Brenda Pfohl know how challenging it can be to have a child with special needs. They understand what it is like for a parent to work tirelessly to make their child’s life as wonderful as possible and are well aware that often times parents and caregivers are so focused on their loved ones that they forget to take care of themselves.  It was with this in mind that the Pfohl’s started David’s Refuge, an organization that “…was formed in honor of David to encourage parents to keep pressing on. As our guest, our prayer for you is that you will be restored and refreshed to fight the good fight, to finish the race and to keep the faith.”

On their website, they explain “As parents of a child with special needs, we understand the feelings of isolation, exhaustion, and stress families experience in their role as caretakers. We’ve wrestled with questions of faith, felt the sting of broken dreams, and have questioned whether what we were doing really mattered.”

Their mission is to provide a place of respite free of charge for parents and guardians of children with special needs or life-threatening medical conditions where they will be refreshed, restored, and renewed in their role as caregivers. David’s Refuge allows parents and other caregivers much needed time to rest, reflect and recharge from the stress of full-time care-giving. They want others to know three things: that they are not alone, what they do matters, and there is a God who loves them.

To learn more about David’s Refuge and the Pfohl’s visit

Warren also writes a wonderful blog that touches on many aspects of having a child with specialneeds,

Grief is felt deeply by all members of our community and having the support of friends and loved ones is incredibly important. However, being separated from a support system because of school or careers can add an additional layer of complication to the grieving process.

This article offers expert advice on recognizing symptoms of grief, accepting loss, and getting help. It begins with:

Grief after a deeply-felt loss can range from a sadness that lingers, always hovering in the background, to a total emotional upheaval that turns your entire world upside down. For the typical person, dealing with a loss can be one of the most difficult things to get through. But for a college student, it can be even more complicated.”

“College life is a period of drastic change, with a tremendous amount of growth and maturity at times tinged with confusion, fear, pressure and the thrill of newfound independence. Throw grief into the mix, and it’s easy to understand how difficult it can be to handle the huge spectrum of emotion that a college student might experience. This guide aims to provide a solid rock of support for grieving students and those who care about them.”

The article includes practical advice for not only those in college but anyone separated from their loved ones during a time of grief.

Some of the topics covered are:

  • steps to take immediately after a loss
  • tips on taking care of your mental health
  • symptoms of grief and how to recognize them in yourself and others
  • when and where to seek help, the importance of addressing and treating grief
  • how to help a friend of loved one struggling with grief
  • links to additional resources

In particular it highlights that grief is different for everyone and that it is important to be aware of how you are feeling and to get help if you need it. It’s a great piece for siblings, extended family, and friends to read if they are moving away from their support community.