We begin educating our children at birth by transmitting attitudes on all topics in subtle ways. There are some basic principles to guide parents when discussing difficult topics with their children.
HONESTY: It is extremely important to be open and honest. Children know when parent is not telling the truth or is anxious and will then become suspicious and probably stop listening.
AGE APPROPRIATE: The information presented should be age appropriate in language and in concepts the child can understand.
SMALL DOSES: We learn progressively and information is best absorbed in small increments over time. When we listen carefully, children let us know when they've heard enough and will return for more at a later time.
COMFORT: Do all that is necessary to talk in calm and comfortable manner. Perhaps discuss your plan with an ALS health care professional, family member or friend first. Many find it is helpful to role-play such situations prior to meeting with the child. Support groups are excellent places for such practice.
Sharing information about ALS and how it affects individuals may be the most difficult topic for the ALS family. It seems advisable to discuss less difficult topics first.
Some attitudes and beliefs important to transmit to children about ALS are:
· Acceptance and respect for members of the family with ALS.
· Optimism and hope. Extensive research is in progress and a treatment and hopefully a cure will be found.
· No one is at fault for ALS; it is not a punishment. You never know who in the family will develop ALS.
· Admit that ALS is confusing and difficult to understand.
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Should children be told about ALS? The answer was a unanimous YES. When discussion is avoided, parents convey that ALS is something about which there should be embarrassment and shame. Children need to hear about ALS.
General Principles for Helping Children
Understand a Parent's Chronic Illness.
1. Truth is better than deceit, and honesty fosters trust and a sense of security. In other words, never evade your child's questions and never lie when you answer. However.......
2. Before jumping in to answer a question, always take time to clarify what the question was really about. The question, "Is Daddy OK??, coming from a young child whose father with ALS tripped and fell down the stairs, probably just meant, "Is Daddy hurting? Does he need help?"
3. There may not be a need to introduce "the whole truth". It is often more humane and effective to share the truth in "installments", or easier-to-swallow bites. For instance, when asked "Can doctors make Mommy better?" it's perfectly OK to make a distinction between symptom relief and cure.
4. Be aware of your child's developmental level and how this affects his/her reasoning and understanding before launching into a complex explanation about the illness and its causation. Abstract thinking does not develop until adolescence; before then, abstract discussions about genetics will only go over a child's head and confuse them.
Telling a Preschooler:
· Use language your child knows.
· Keep explanations very short.
· Use dolls and puppets to illustrate the hospital visit.
· Forewarn the child of anticipated changes in the affected parent's role. For instance, "Daddy has a serious sickness, that's why he's been jumpy and dropping things lately. The doctors are trying to help him with this sickness, but he won't be strong enough to play ball with you for a while."
Telling a School-Aged Child:
· Give the child the name of the disease. Write it down.
· Emphasize that nothing the child did caused this disease.
· Point out that you can't "catch it" by hugging or sharing a snack with the person who has it.
· Outline a plan for making sure the child's needs are met, and their daily routine is kept as normal as possible. This may involve enlisting the help of relatives or neighbors in filling in for parental responsibilities which the affected parent can no longer handle.
· Give the child an overview of what doctors are doing to help control the symptoms of the disease.
· Give examples of what the child can do to help the affected parent feel loved (draw a picture; tell Daddy you love him, etc.)
· Make sure your child knows that his/her parent's irritability or mood swings are not their fault.
Telling a Teenager:
· Give as much detailed information as possible.
· Be prepared for any reaction, including anger - all are normal.
· Answer every question, including ones about transmission, as fully and honestly as possible.
· Give the teen options for doing further research on her own (for instance, Internet resources), pointing out recommended and reliable resources.
· Be flexible as far as daily chores and routines; don't expect your teenager to volunteer to take on extra duties or hospital/doctor visits to alleviate your own load.
· Make sure the adolescent has someone to talk to from outside the family, preferably someone they trust and who will keep their conversations confidential.
Specific Considerations in Talking to
Children and Adolescents ALS
1. As the illness progresses, symptoms will become more noticeable and elicit social reactions to visible features of the disease. The most important principle here is, no matter how painful it is for the adults in the family to acknowledge that such public reaction might exist, to never deny the possibility that kids observed a social reaction you missed. Rather than deny the stigma associated with ALS, have a frank discussion about how people tend to fear any "different behavior" which they do not understand. Make a plan about who you'll share the diagnosis with and who you might not; enlisting the support of teachers and special coaches is probably a good idea, telling the stranger on the street is not.
2. As mood swings become more accentuated, and the affected family member's insight decreases, children may feel nothing they do is ever right or enough to please. Be alert to signs of discouragement or symptoms of anxiety (including stomach and headaches) and be prepared to tackle the topic of personality changes associated with ALS.
3. Individuals with ALS tend to overestimate their capacities, physical as well as mental. As difficult as it may be to tell them they are no longer able to parent alone, building in alternatives is less painful than dealing with the aftermath of well-intended, but erratic, parenting.
4. Never ask an older child to act as chaperone for a parent with ALS; the burden or responsibility and split loyalties are just too much for any child or teenager to bear.
It is never easy to tell anyone about ALS, and it is even harder with kids. I hope this will make the process easier.
"Self-pity is our worst enemy, and if we yield to it, we can never do anything wise in the world." Helen Keller
MGM
© ALS Independence 2003-09