Support for Batten Siblings

“A Happy Hat” by Cecil Kim

A Happy Hat is a sweet and upbeat tale of resilience, optimism, and hope. The life story of a hat — a very happy hat — and its various owners illustrates how dealing with disappointments and stressful situations is crucial to one’s well-being.

“Forever Special Friends” by Susan L. Greig

The story of a young girl with Batten Disease (NCL) as told through the eyes of her eight year old best friend. A book written and designed for both children and adults alike that helps to explain the prognosis and disease process.  Simple explanations and information about the disease in its earliest stages help families and loved ones know what to expect as the progression occurs.  Forever Special friends is an excellent resource to help siblings cope with changes in their brother or sisters behavior and it has helped both children and adults come to the acceptance that Batten Disease is a terminal disease. During bereavement and beyond this book provides comfort and help to acknowledge the grief that comes from losing a child.

“Goodbye Brecken” by David Lupton

Isabelle and her dog Brecken were always together, playing and snuggling. They were even born on the same day! When Brecken dies, Isabelle feels angry, sad, and lonely. Isabelle dreams she goes on a journey through the woods to find him. When she wakes, she is able to accept Brecken’s death and say goodbye. 

“Healing Your Grieving Heart Journal for Teens” by Alan D. Wolfelt, Ph.D.

Teenagers often don’t want to talk to adults—or even to their friends—about their struggles. But given the opportunity, many will choose the more private option of writing. Many grieving teens find that journaling helps them sort through their confusing thoughts and feelings.

Yet few journals created just for teens exist and even fewer address the unique needs of the grieving teen. In the Introduction, this unique journal—written by Dr. Wolfelt and his 14-year-old daughter, Megan—affirms the grieving teen’s thoughts and feelings and offers gentle, healing guidance. The six central needs of mourning are explained, as are common grief responses. Throughout, the authors provide simple, open-ended questions for the grieving teen to explore.

“Help Me Say Goodbye:  Activities for Helping Kids Cope When a Special Person Dies” by Janis Silverman

Help Me Say Goodbye An art therapy and activity book for children coping with death. Sensitive exercises address all the questions children may have during this emotional and troubling crisis. Children are encouraged to express in pictures what they are often incapable of expressing in words.

“How Do You Doodle?  Drawing My Feelings and Emotions” by Elise Gravel

How Do You Doodle? is a drawing book for kids to help them get in touch with and learn to express their emotions. The book is divided up into different fun doodle activities such as name your feelings, what do you feel when, and how does it feel when to help readers start thinking about what they experience when they are feeling an emotion. How do You Doodle? can be used alone, or in association with a therapist or parent to help kids better realize and understand their emotional responses to situations, and to help promote better emotional health. A “Note to Parents” is included.

“Part of Me Died Too:  Stories of Creative Survival Among Bereaved Children and Teenagers” by Virginia Lynn Fry.

A moving and eloquent chronicle of eleven children, ranging from toddlers to teenagers, who have lost family or friends shows how drawing, music, and other rituals can help the grieving process, offering creative strategies for dealing with loss.

“Sadako and the Thousand Paper Cranes” by Eleanor Coerr

The star of her school’s running team, Sadako is lively and athletic…until the dizzy spells start. Then she must face the hardest race of her life—the race against time. Based on a true story, Sadako and the Thousand Paper Cranes celebrates the courage that makes one young woman a heroine in Japan. 

“The Goodbye Boat” by Mary Joslin

Saying goodbye to someone you love is always hard. Saying goodbye when someone you love dies is perhaps the hardest thing of all.

Joslin’s simple, thoughtful text and Little’s evocative illustrations explore the pain and grief of saying goodbye and open the door to discussion for readers of any age. The Goodbye Boat provides a message of hope that sadness will ease and comforts with the reassurance that death is not the end.

“35 Ways to Help a Grieving Child” by the Dougy Center Staff

If you know a child or teen who has experienced a death, this guidebook presents you with simple and practical suggestions for how to support him or her. Learn what behaviors and reactions to expect from children at different ages, ways to create safe outlets for children to express their thoughts and feelings and how to be supportive during special events such as the memorial service, anniversaries and holidays. 

“Visiting Feelings” by Lauren Rubenstein, JD, PsyD

Visiting Feelings encourages children to treat their feelings like guests — welcome them in, get to know them, and perhaps learn why they are visiting. Through this purposeful and mindful exploration, Visiting Feelings harnesses a young child’s innate capacity to fully experience the present moment and invites children to sense, explore, and befriend all of their feelings with acceptance and equanimity. A Note to Parents provides more information about emotional awareness and mindfulness, plus practical advice and activities for introducing mindfulness into daily family routine.

“Where Are You?  A Child’s Book About Loss” by Laura Olivieri

Where Are You: A Child’s Book About Loss is a kind and supportive text with beautiful illustrations designed to help children of all ages cope with the loss of a loved one. It is created with love and care so that even the youngest readers will find comfort during this stressful and difficult time.