Kids Corner

Help with Talking to Your Children About ALS
By Sharon Rugg, LCSW

Should children and adolescents in ALS families be told about the illness? The answer was a resounding, "Yes!" There are many important reasons why children should not only be informed of the illness but also be included in all phases from the diagnosis on. The question before us now is, "How in the world do we even begin to talk with our children and adolescents about the ALS diagnosis and its prognosis?"

First recognize that discussions about ALS will vary according to the age of your children. Perhaps more important than what you say and how you say it is the fact that you are spending special time with your child and listening to his questions and concerns. Providing facts slowly will give your child time to digest information and return later with more questions. Answering as honestly as possible will make it unnecessary for you later to go back and repair any damage that half truths may have caused. Even though most children in families coping with a serious illness often have similar questions in mind, they sometimes never ask or voice their concerns because they may sense that it is not okay to talk openly about the illness. Therefore, as the adult, you need to communicate to your child, "This is a family where information and concerns can be shared."

Common questions that children often have when someone close to them is seriously ill are: "What is wrong with him?"  "Did I cause it?"  "Can I or anyone else in the family catch it?"  "Will she die?"  "What will happen to me?" These questions are tough ones, but need to be addressed for the emotional health of the child and family.

As a former hospice social worker and former Children and Family Counselor for The ALS Association of GA, Inc., I have worked with many families struggling with how to answer these questions. As an experienced play therapist, specializing in issues of children’s grief and loss, I assembled a collection of tools and techniques that have been effective in my work in helping children through these difficult times. The title of this new resource is Our ALS Family Playbook: Activities for Helping Our Children Cope.

Because young children are not as articulate or sophisticated about their feelings and concerns as adults, they often communicate best through metaphorical play. Using play to work through the struggles children are experiencing can be a powerful way to help children cope with the challenges created by ALS as well as their deepest feelings and concerns. The activities in the playbook can actually help all members of the family, (i.e., the children, adults and member with ALS) begin to talk about the ALS diagnosis, changes happening in the family, as well as important questions, concerns, thoughts and feelings about the illness. Although many of the activities are designed for young children, families with teens might also benefit from discussions which may come out of doing the activities together. Families are encouraged to work together on the activities and to proceed through them gradually as the illness progresses.

Families with children who are currently being served by The ALS Association of Georgia may request a copy of Our ALS Family Playbook by contacting its author, Sharon Rugg, LCSW, at SharonRugg@aol.com or (770) 928-1027.

Bereavement Camps for Children
Bereavement camps can be a wonderful experience for children, ages 7 -17, who have lost a family member to ALS or death of any kind. During the weekend long camps, grieving children discover they are not alone in their grief as they meet and share with many other children who have lost loved ones. In a safe environment, they learn that it is okay to express their feelings of grief while also having fun. These camps are free of charge. Activities range from group sharing, music and singing, campfires, and arts and crafts to swimming and boating, ropes courses, nature hikes, memorial services and more. Reunions for campers and their families or workshops for parents and guardians may also be available.

Teen Talk: Emily’s Story
By Sharon Rugg, LCSW, CT, RPT

There is much we can learn from what our teens have to say about their experience with ALS. Here is what Emily Long, a 15 year old freshman at Brookwood High School in Snellville, GA wanted to share with you in her recent interview with Sharon Rugg:

Sharon: Tell us about your experience with ALS.

Emily: My grandmother had ALS for 1 1/2 years before she died last August. She lived nearby and because I was very close to her, I helped my mother take care of her daily.

Sharon: How did you help?

Emily: I helped bathe and feed her. I kept her company. I would watch her physical therapist so that I could help Granny with massages, stretches, and other exercises. We did fun things too. Granny and I used to sing and read and watch Lifetime movies together. I would take her for walks in her electric wheelchair and she would watch me water the flowers we planted for her. We painted together and did puzzles.

Sharon: Tell us about some of the changes you and your family went through.

Emily: We learned to cope with our feelings better. Throughout her illness, it seemed that I spent more and more time at Granny’s and had less time for friends. I had to give up a lot of activities that most teens enjoy.

Sharon: Emily, what was the hardest part of your experience of having a grandmother with ALS?

Emily: The hardest part was helping her to die and letting her go.

Sharon: What kinds of feelings did you experience?

Emily: Anger at God; guilt when I would leave her to spend time with friends; sadness over her dying.
Sharon: What helped you get through this experience?

Emily: Talking with Granny about my feelings. Letting her know that when she was ready to die, that we would be okay. Friends and family helped too. Talking to you and my school counselors and other people who understood what I was going through. 

Sharon: What did you learn from this experience?

Emily: I learned that family is really important and you have to live each day to the fullest!

Sharon: Do you have any advice for other teens who may be struggling with some of the same issues?

Emily: Yes, you are not alone. No matter how hard it seems, you will make it through.  It is okay to cry and grieve. Make every day count with your family member who has ALS.

Sharon: What is the hardest part now that your Granny has died?

Emily: Growing up without her and wanting to share stuff that happens to me that I know would make her proud. But I know she is watching and I talk with her a lot. When the sky is especially colorful, I say, "Good job, Granny!" She loved to paint and I think she is still water coloring!

Emily Long is a candidate for "Ms. Freshman" at her school this year. She enjoys tennis, playing the guitar, and singing in the chorus. One of her favorite things to do is to spend time with the elderly at the nursing home which Granny used to manage. In the future, she would like to be a nurse. If any teens would like to contact Emily, her e-mail address is emdlong@aol.com.

Teen Talk: Ten Tips for Parents
By Sharon Rugg, LCSW, CT, RPT

Families confronted with ALS should find many helpful tips and suggestions in Our ALS Family Playbook: Activities to Help Our Children Cope. The Playbook is especially useful for families with young children. Here are some additional tips for parents concerned about their teenagers.

1) Keep your teen informed and updated – be open and honest about ALS and its impact on your family.

2) Talk about and provide answers to the troubling questions your teen has about the disease and its implications for everyone in the family.

3) Involve your teen in helping care for the family member with ALS in a meaningful way, but don’t overdo.

4) Encourage your teen to spend quality time with the family member with ALS, building new special memories together and reminiscing about others of the past.

5) Enlist others to form a support network for your teen for the tough days ahead – 
inform and enlist the help of teachers, counselors, coaches, clergy, neighbors, friends, extended family members, and others.

6) Carve out time from the daily pressures and demands of caring for the family member with ALS to spend some quality moments with your teen.

7) Encourage your teen to cry and grieve – expressing the sadness, pain, anger, and anxiety he or she is feeling and to do so in a healthy and constructive way.

8) As much as possible, keep your teen positively engaged in school and in other significant activities and events of teenage life.

9) Be open and responsive to important conversations with your teen about death, dying,  and life after death.

10) Take the time to care for, restore and refresh yourself so that you can be an effective caregiver for everyone in the family.