Fielding the Tough Questions: How to talk to children about ALS


Rules of Thumb in Talking to All Children, All Ages about ALS:

1. Tell your child “Mom or Dad is seriously ill.”

2. Tell them it’s called ALS or Lou Gehrig’s Disease.

3. Tell them your best understanding of what may happen.

Then:

4. Listen for cues; respect shorter attention spans. Each child is different in how they perceive and cope with challenges. Your child will often lead the way with the questions they need answered. Their concerns should guide the conversation. Allow them to set the pace; don’t force them to talk about it if they don’t want to or try to go beyond their attention span. Try again another time (“Would you like me to tell you about Mom/Dad now?”).

5. Talk honestly with age-appropriate words and concepts. Children want to know the truth, and discussing it avoids misinterpretations and unexpressed fears later. “Protect” children by explaining the truth and being there to support them, rather than avoiding the subject until it’s unavoidable.

6. Reassure your child that ALS is not contagious. Young children often conceptualize illness in terms of contagion, like “catching” a cold.

7. Let your child know she/he did not cause the parent’s ALS. Children of all ages, as well as adults, may have questions about this. Reassure them that no one did, or didn’t do, anything to cause ALS.

8. Tell your child there will always be someone to care for them. Then tell them your plans, being specific about people and tasks.

9. Listen again! Listen with your whole self to hear what your child is thinking and feeling. Encourage them to talk more, even about difficult emotions or situations, with open-ended questions like “Can you tell me more about that,” or “What is that like for you?” and “What else?” (“What else” invites more information than “Anything else,” to which yes or no is the easiest response). Listen without judgment, and without offering immediate solutions; that can come later. If you feel your child has more to say, you might “go fishing.” Using a tone of curiosity, point out the behavior you’re seeing that tipped you off, not on your guess why they’re acting that way, and let them respond. For example: “I know you said you’re fine, but I’ve noticed you’ve been pretty quiet on the way home from soccer practices all week. You’re usually talking a mile a minute. I wonder if something is on your mind?”

10. Encourage expression of feelings by naming them. Teaching children to understand basic concepts of feelings is an important life skill. Guide them in understanding that feelings help us to pay attention to what’s important to us; that feelings change, sometimes on their own and sometimes by doing things to change them ourselves; and that there are helpful and destructive ways to express feelings (like verbal or physical attacks on others, versus talking, writing, or drawing out the experience). Comforting a child physically, with hugs or soothing, is okay, as long as it doesn't cut off the expression of feelings.

11. Include your child in family discussions of the illness as appropriate. Children perceive the undercurrents of feelings in families even if they don’t have the language to articulate what they absorb. Allowing children to be involve in important issues validates the child’s sense of importance in the family, and avoids them feeling left out, confused, or fearful when they know something is changing. And very importantly: it gives them time to process the changes ALS brings to the family at their own pace.

12. Arrange for special times to be with your child for talk and play.

Children of All Ages: Things to know about children and change


• Children often show rather than talk about their feelings, which are experiences on a sensory (physical) level.

• Children attend to and experience difficult emotions in small doses. This is healthy.

• Age is only one influence on the child’s experience of emotions. Type of change, previous experiences with loss, presence of caring parents and other adults, the child’s position in the family, the child’s maturity, and how much the change affects his or her routines and sense of security all factor in.

• No two children react in the same way. Listen, observe, support where they are.

• Children may appear unaffected by changes. This may be due to lack of understanding the implications of a change, or, if overwhelmed by intense feeling, they may create a temporary inner retreat that feels safe.

• Prepare children for changes in advance and they will handle them better.

• Things to prepare them about:

1) Mom/Dad may sometimes be distracted or short-tempered, and the child may feel ignored or unfairly treated. Explain how the sick parent is feeling, and that it is tough for them to be tired or feel weaker when they want to be more active. Reassure the child that they are still just as caring and involved as parents (see the story about Ben, lavender paper).

2) Mom/Dad may not feel well even if it doesn’t show on the outside. They will need more resting times.

3) Mom/Dad may need to change the foods they eat so they can chew and swallow them more easily.

4) Some people with ALS lose weight and look thinner.

5) If describing a feeding tube: describe trying to go somewhere on their bike and finding the bridge washed out. Do they look for the detour or turn around? When swallowing is “broken,” some people choose another way to eat.

6) The child may have many different feelings, from anger to sadness. They may cry. That’s okay. Mom/Dad sometimes feel that way too.

7) Help them think of the things that make them feel better in advance to use when they’re feeling down.

 
AGE SPECIFIC HINTS

PRESCHOOL

Ages 0 to 3

Routine equals security for toddlers. As much as possible, try to keep the child’s schedule (preschool, mealtimes, naptimes, bedtimes) predictable.

• Keep the number of caregivers to an absolute minimum.
• Minimize change.
• Maximize security.

When explaining the disease, use simple language (“Daddy/Mommy gets more tired,” or “His/her leg/arm/hand is not strong and won’t get better.”“Daddy/Mommy uses this to help him/her walk.”etc.).

Ages 4 to 6

Tell them over and over:

• Tell them “Nothing you ever did made me get ALS.”
• “You can’t catch ALS from me. No one else can catch this. This ALS will only affect me.”
• Tell them who will be taking care of them and keep updating them about who will help with Mommy/Daddy’s usual tasks, if needed
• Explain that most of the time, when people get sick, they get better. Mommy/Daddy is sick in a different way and won’t get better. Remind them of times when they or their friend got sick and got better, and that they will again. This is only Mommy/Daddy’s sickness.
• Concepts of time and finalities, such as death, are not well understood.
• Prepare to give the same answers to variations on previous questions many times.

 
SCHOOL AGE (7 to 12)

Ages 7 to 9

“Show me.” Children this age become very interested in bodies (theirs and yours) and the practicalities of ALS.

Ages 9-12

Children now understand concepts of permanence and finality. They understand that when things die, they don’t come back.

Tell them over and over:
• "Nothing you ever did made me get ALS.”
• “You can’t catch ALS from me. No one else can catch this. This ALS will only affect me.”
• Tell them who will be taking care of them and keep updating them about who will help with Mommy/Daddy’s usual tasks, if they are needed.
• Explain that most of the time, when people get sick, they get better. Mommy/Daddy is sick in a different way and won’t get better. Remind them of times when they or their friend got sick and got better, and that they will again. This is only Mommy/Daddy’s sickness.
• Answer their questions honestly. Then prepare to answer them again and again.
• If they ask, help them to understand what ALS feels like. (HINT: Make a game out of it! Play with it!). Strap weights on their arms and legs and try playing a short game of frisbie. Or have them sit in your wheelchair and try to accomplish a task without getting out of the chair. Load up their mouths with marshmallows and let them experiment with telling you what they want to do this weekend.
• Let them meet and talk to Mommy/Daddy’s health care team, and see where Mommy/Daddy goes for ALS clinic appointments.


TEENAGERS (Ages 13-18)

Complete honesty is essential in relating to teens. At this age, teens are looking for ways to separate from their parents, as they develop their own identity. Incomplete information may be perceived as a betrayal and provide an excuse to become more distanced. Teens often need to feel well-armed with information to be in control.

• Answer questions fully and truthfully.
• Tell them “Nothing you ever did made me get ALS.”
• “You can’t catch ALS from me. It’s not contagious. ALS will only affect me.”
• Tell them who will be taking care of them and keep them involved in negotiating who helps with Mom/Dad’s usual tasks as needed.
• Plan on the unexpected.

 
THE QUESTIONS

There are three questions your child may never ask you, and may never speak out loud to anyone. But they are asking themselves, and may be too fearful of hearing the answers. It is critical that you answer these unspoken questions, even unbidden.

1) What did I do wrong to make you get ALS?
2) Can I catch ALS from you?
3) Who will take care of me?

And the answers:

1) “Nothing you ever did made me get ALS.”
2) “You can’t catch ALS from me. No one else can catch this. This ALS will only affect me.”
3) Tell them who will be taking care of them and keep updating them with specifics about how Mom/Dad’s usual tasks will be taken care of.

Hint: You might want to preface these answers with “Some kids wonder if…”

Perhaps the toughest question:

“Are you going to die?”

All children : “Everyone dies sometime. But yes, people do die from ALS.”

Depending on the child, you may want to add:
• “People do die from ALS sooner than people who don’t have it.”
• If it is your teenager asking, include information about the prognosis as you understand it.
• Add some of your own reactions to the information if you wish, such as:  “But not anytime soon!”


~~~~Something for you as parents to remember: ~~~~

 “All life is terminal. Even if one’s own timetable is tragically shortened by a medical diagnosis, the end is not yet. There is still time, time for children and parents who love each other to make the most of. Don’t try to shield your children from making the most of that time.” (Kathleen McCue, 1994)
 

 
WARNING SIGNS YOUR CHILD IS STRESSED

The main thing to look for is CHANGE, in any of the following areas:

• Sleep disturbance
• Significant change in appetite
• Newly aggressive play or behavior
• Fears that are new and persistent
• Toys disappear
• Developmental failures   (e.g.: Toilet trained child no longer toilet trained)
• School problems
• Loss of pleasure in usual things
• Withdrawal from social interaction
• Persistent “down” mood

Warning signs of suicide:
1. Talking about it
2. Taking risks
3. Attempting

Get professional help right away if your child shows any of these warning signs.


SCHOOL PROBLEMS:

*** Your duty: don’t allow failure! This can set up a lifetime pattern. What to do:

Step 1: Talk to your child and:
• Acknowledge child is hurting
• Find out if anything specific is happening to make school more difficult for the child
• Explain that, while this is hard, they must continue to keep their attention on school. This is their first priority. Tell them that together with their teacher(s), if appropriate, you’ll devise a plan to address their difficulties to help them succeed again.

Step 2: Contact your child’s teachers, discuss the situation, and ask for a joint meeting.

Step 3: Make a plan with the teachers and counselors, *with your child present and actively participating,* and develop a plan of consistent, targeted support.

 
HOW TO GET YOUR CHILDREN TO HELP

General Guidelines:
1) Everybody helps. It’s appropriate to give children tasks in the home.
2) Positive reinforcement works! Praise lavishly, and give occasional rewards, like an extra half hour of computer time or a trip to the ice cream stand.
3) First priority is SCHOOL for ages 7 and up.
4) Ensure time for age-appropriate activity, like playing in the school band, spending time with friends.
5) Taking on more responsibilities can add to children’s sense of self-confidence and independence.

AGE APPROPRIATE HINTS

Ages 2 to 6

• Tasks are targeted to help your child feel involved, geared to their age.

• Don’t expect much!: “Could you please attach the velcro on Mommy’s shoes?”

Ages 7 to 12

• It’s okay for school age children to help with most household tasks like laundry, dishes, some cooking, cleaning and taking real responsibility for the family pets.

• In a family meeting, plan together how to divide up the tasks. Make a list and work from that, asking for volunteers first, then divide up the tasks no one wants.

• Divide tasks up evenly, without regard for gender.

• Remember to praise them for completing each of their tasks. Children are self-involved, naturally, and helping out the family is a stretch. Don’t take it for granted that they’ll have adult motivations for helping others! Reinforce positive behaviors and you will create the desire to help more.

• Expect backfires. Calmly but firmly reinforce family expectations. Tell them it’s okay not to like it; you don’t either. But it is how things need to go now.
 
Teenagers (are you ready?)

• Teenagers can be expected to help with household chores, neighborhood errands, and, the dreaded babysitting for younger siblings.

• Expect backfires. Calmly but firmly explain that you need them to do this. You might need to entice them with more tangible rewards if the duties outweigh those of younger siblings (especially if they’re watching the younger siblings for you).

• Be prepared for griping. Pay attention to their actions, not their “affect” (mood). Did they do what you asked? With grumbles or without doesn’t matter: they did it.

• Praise them for accomplishing tasks, even if they are “expected” ones.
 
PARENTS' CHECKLIST FOR SUPPORTING YOUR CHILDREN

Here is a summary of ways to help your children as they help you.

1. If roles have changed, be sure to let your child know
• Who to go to for permission to do or have things
• Who to ask for help
• Who to tell about problems (real life and emotional)
• Who does the discipline

2. Where possible, both parents should participate in parenting at some level.
• Assisting with homework
• Listening to the child tell about the day
• Providing direction and instruction
• Showing love
• Having an opinion in how the child behaves, where the child goes and what the child does

3. Build in childhood activities for the child
• Regular time with friends
• Participation in extracurricular activities
• Exploration of gifts and interests (sports, music, i.e.)

4. Encourage positive and adult led structured peer group participation such as:
• Girl Scouts/Boy Scouts, 4H
• Church youth activities
• Community Volunteer groups

5. Avoid having your child help with intimate self care tasks

6. Avoid language that blurs relational lines, such as:
• “You are the man (or lady) of the house now.”
• Having the child be primary caretaker for younger siblings
• Behaving toward your child as a close friend or peer by sharing your confidences with them

7. Remember that your child lacks the maturity to handle the same concerns and fears that you have.
• Help your child restore their sense of confidence in life; watch for fearfulness
• Child being overly protective or anxious about your health
• Child being overly protective or anxious about the health of other important adults
• Child frequently acting on or talking about fears about safety or death.

8. Be willing to seek counseling for your self and your child.


 
ALS – A FACT SHEET FOR CHILDREN


HOW DID ALS GET ITS NAME?
ALS Stands for Amyotrophic Lateral Sclerosis.  It is also called Lou Gehrig’s disease.  Lou Gehrig was a famous baseball player who played for the Yankees.  He was diagnosed with ALS in 1939.

WHAT IS ALS?
ALS is a disease that attacks the motor nerve cells.  Motor nerve cells help make our muscles work.  When they stop working, the muscles stop working.  This causes paralysis in arms and legs, as well as in the ability to swallow, talk, and breathe.  The brain is not affected by ALS, which means the person with the disease can still think for his or herself.

HOW DOES SOMEONE KNOW THEY MIGHT HAVE ALS?
A person with ALS might trip easily, feel weak, drop things, or talk with slurred speech.

IS THERE ONLY ONE TYPE OF ALS?
There are two kinds of ALS.
1. Sporadic ALS is the most common.  No one knows for certain what causes it, but doctors and research are working every day to find an answer.
2. Familial ALS is found in approximately 1 out of every 10 ALS patients.  It is inherited from another family member.

HOW MANY PEOPLE HAVE ALS?
In the United States, 30,000 people have ALS at any onetime.  Every year, 5,000 new people will be diagnosed with ALS.  Most people with ALS are between 40-70 years old.  Both males and females get ALS.

HOW LONG CAN YOU LIVE WITH ALS?
People with ALS live an average of 2-5 years.  But with the help of doctors and researchers, many people are living longer, more productive (normal) lives.

HOW DOES A DOCTOR KNOW IF SOMEONE HAS ALS?
Doctors do many tests on a person with ALS symptoms.  They rule out other diseases like ALS through these tests.

CAN ALS BE TREATED?
There is no cure for ALS.  But the symptoms of the disease can be treated to make a person more comfortable. 

WHAT IS THE ALS ASSOCIATION?
The ALS Association is a group of people who work every day to fight ALS, and help support ALS patients and their families.  The people who work and volunteer at the ALS Association also support research, and educational programs to help people understand the disease.
 
RESOURCES FOR THE CHILDREN: A GUIDE FOR PARENTS
WEB SITES

http://www.march-of-faces.org/KIDS/moe1.html (that’s moe-number one, not letter l)
An interactive, low key site for young children with basic information about ALS using an animated nerve cell as the narrator. Includes sound. Recommend viewing with a parent for most productive experience.
 
http://www.als411.ca/
Canadian ALS Society website with excellent supportive information in separate sections tailored to school age children and teens.
 
http://kidshealth.org/parent/positive/talk/stress_coping.html
A short, clear description of how you can support your child and teach them skills to cope with difficult situations.
 
http://www.facebook.com/family/Kals/4
Kals is a Facebook page for "Kids of ALS" families. As with all social media networking, please supervise and guide children in how to use these sites safely.

http://www.copecaredeal.org
Cope, Care and Deal
• Geared toward teenagers. Provides tips for teens coping with stress and problems, from the normal issues of adolescence to having a parent with a serious illness, and other mental health issues
• Gives guidance on how to identify personal strengths and coping strategies

BOOKS FOR PARENTS:
1) How to Help Children Through a Parent’s Serious Illness, by Kathleen McCue
 A very sensitive but practical, action-oriented book for dealing with children, from age 2 to 20, through all phases of an illness. It explores different scenarios and family situations with step-by-step advice. Highly recommended.

 Available through Compassion Books, 479 Hannah Branch Road, Burnsville, North Carolina 28714. Phone (828) 675-5909. ISBN 0-312-14619-1

2) Helping Children Grieve and Grow, by Donna O’Toole
 A brief, easy-to-digest 13 page pamphlet which reviews the most important elements of supporting your child through any illness or loss with comfort, information, and hope.

 Available through Compassion Books, 479 Hannah Branch Road, Burnsville, North Carolina 28714. Phone (828) 675-5909. ISBN 878321-12-9

3) Talking About Death: A Dialogue Between Parent and Child, by Earl A. Grollman
 A classic in the literature, this book raises the tough questions children of all ages ask,  and guides parents in their answers. Illustrated, it also contains a “read-along” for children (about ages 4 to 13) to help begin the dialogue with your child. Also contains an extensive resource section for the adult parents facing grief.

Beacon Press books, 1990. ISBN 0-8070-2363-9
 
Books for Children (ages 3-18):

4) Facing Change: Falling Apart and Coming Together Again in the Teen Years by Donna O’Toole
A short (47 page), teen-friendly, straight-talking, accessible booklet on loss and change. It includes a worksheet on creating one’s own support system, and a 75 item list of things to do to help oneself.

Available through Compassion Books, 479 Hannah Branch Road, Burnsville, North Carolina 28714. Phone (828) 675-5909. ISBN 1-878321-11-0

5)   What I Learned Today by Tina Ames. $11 (to cover printing costs)
A mother with ALS writes a beautiful, illustrated story for children who know someone with ALS, acknowledging and growing through the process in a positive, supportive way. Highly recommended. For children ages 3 to 10.

Available through the Philadelphia ALS Association (phone: 215-643-5434).

6) In My Dreams “I Do” by Linda Saran.
A short, uplifting story about a grandmother’s continuing love for her grandaughters despite physical changes from ALS. Illustrated. For children age 2 to 7.

Proceeds benefit RAINBOWS, an international organization providing a healing bridge to children and adults through painful transitions, and the Dena Chiodras Saran PALS fund. Available through RAINBOWS: phone: 1-800-266-3206, fax 847-952-1774, email info@rainbows.org. ISBN 0-9672082-0-3

7)    Someone Special is Very Sick, by Jim and Joan Boulden.
An illustrated activity book with interactive questions for adults to read with children, explaining common experiences of children with an ill parent, and helps begin the dialogue with common questions and drawings to help children understand the effects of the illness as well as to express feelings. For children ages K-2.
Also:
8)   When Someone is Very Sick, by Jim and Joan Boulden, for children ages 7-10.

Available through Boulden Publishing, P.O. Box 1186, Weaverville, CA 96093, phone 1-800-238-8433.

Go to Navigating Life with ALS page


 
 

The ALS Association Greater Philadelphia Chapter
321 Norristown Road - Suite 260, Ambler, PA 19002
215-643-5434

The ALS Association is a 501(c)3 nonprofit organization and donations are tax deductible to the full extent of the law.