The following excerpt is taken from Chapter 24 of Childhood
Cancer: A Parent's Guide to Solid Tumor Cancers, 2nd Edition by
Honna Janes-Hodder & Nancy Keene. To order a book, call (800) 998-9938.
Permission is granted to print and distribute this excerpt for noncommercial
use as long as the above source is included. The information in this article
is meant to educate and should not be used as an alternative for professional
medical care.
Parents suggest the following ways to keep the family
on a more even keel:
Make sure that the family rules are clearly understood
by all of the children. Stressed children feel safe in homes that are
very structured with regular, predictable routines.
After yet another rage by my daughter with cancer,
we held a family meeting to clarify the rules and consequences for breaking
them. We asked the kids ( both preschoolers) to dictate a list of what
they thought the rules were. The following was the result, and we posted
copies of the list all over the house (which created much merriment
among our friends):
1. No peeing on rug
2. No jumping on bed
3. No hitting or pinching
4. No name calling
5. No breaking things
6. No writing on walls
If they broke a rule, we would gently lead them
to the list and remind them of the house rules. It really helped
Have all caretakers consistently enforce the family
rules.
We kept the same household rules. I was determined
that we needed to start with the expectation that Rachel was going to
survive. I never wanted her to be treated like a "poor little sick kid"
because I was afraid she would become one. We had to be careful about
babysitters because we didn't want anyone to feel sorry for her or treat
her differently. I do feel that we avoided many long-term behavior problems
by adopting this attitude early.
Give all the kids some power by offering choices and
letting them completely control some aspects of their lives, as appropriate.
For a few months we ignored Shawn's two brothers
as we struggled to get a handle on the situation. We just shuttled them
around with no consideration for their feelings. When we realized how
unfair we were being, we made a list of places to stay, and let them
choose each time we had to go off to the hospital. We worked it out
together, and things went much smoother.
My bald, angry, 4-year-old daughter asked me
for some scissors one day. I asked what she was going to do, and she
said cut off all her Barbies' hair. I told her those were her dolls
and she could cut off their hair if she chose. I asked her to consider
leaving one or two with hair, because when she had long hair again,
she might want dolls that looked like her then, too. But I said it was
up to her. She cut most completely off, and left some intact. It really
seemed to make her feel better.
Take control of the incoming gifts. Too many gifts
make the ill child worry excessively ("If I'm getting all of these great
presents, things must be really bad") and makes the siblings jealous.
Be specific if you want people not to bring gifts, or if you want gifts
for each child, not just the sick one.
Paige has a sister, Chelsea, who was 5 at diagnosis,
and a brother, Dan, who was 4 months old. Chelsea had a very difficult
time. She didn't like it that Paige was getting so many presents and
she often felt left out. When I would try to do something special for
her, she would get mad--she just wanted normalcy.
Recognize that some problems are caused solely by
the drugs. It helps to remember that these children are not naturally
defiant or destructive. They are feeling sick, powerless, and altered
by massive doeses of toxic drugs, and they need both sumpathy and clear
limits. Remember, when they get off the drugs, their real personalities
will return.
If your child likes to draw, paint, knit, or do collages
or other artwork, encourage it. Art is both soothing and therapeutic and
it allows the child a positive outlet for feelings and creativity. If
your child writes or does artwork, recognize that powerful emotions may
surface for both child and parents.
At my daughter's preschool, once a week each
child would tell the teacher a story, which the teacher wrote down for
the child to take home. Most of my daughter's stories were like this
"There was a rhinoceros. He lived in the jungle. Then he went in
the pool. Then he decided to take a walk. And then he ate some strawberries.
Then he visited his friend." But the week before or after a painful
procedure, she would dictate frightening stories (and this from a kid
who wasn't allowed to watch TV). Two examples are: "Once there were
some bees and they stung someone and this someone was allergic to them
and then they got hurt by some monkey bars and the monkey bars had needles
on them and the lightning came and hit the bees," and, "Once upon a
time there were six stars and they twinkled at night and then the sun
started to come up. And then they had a serious problem. They shot their
heads and they had blood dripping down."
Allow your child to be totally in charge of his art.
Do not make suggestions or criticize (e.g., "stay inside the lines" or
"skies need to be blue not orange"). Rather, encourage them and praise
their efforts. Display the artwork in your home. Listen carefully if your
child offers an explanation of the art, but do not pry if it is private.
Above all, do not interpret it yourself or disagree with your child on
what the art represents. Being supportive will allow your child to explore
ways to soothe himself and clarify strong feelings.
Jody was continually making "projects." We kept
him supplied with a fishing box full of materials, and he glued and
taped and constructed all sorts of sculptures. He did beautiful drawings
full of color, and every person he drew always had hands shaped like
hearts. If we asked him what he was making, he always answered, "I'll
show you when I'm done."
Come up with acceptable ways for your child to physically
release anger. Some options are: ride a bike, run around the house, swing,
play basketball or soccer, pound nails into wood, mold clay, punch pillows,
yell, take a shower or bath, or draw angry pictures. In addition, teach
your child to use words to express his anger--for example, "It makes me
furious when you do that," or "I am so mad I feel like hitting you." Releasing
anger physically and expressing anger verbally are both valuable life
skills to master.
Shawn was very, very angry many times. We had
clear rules that it was okay to be angry, but he couldn't hit people.
We bought a punching bag that he really pounded sometimes. Play dough
helped, too. We had a machine to make play dough shapes, which took
a lot of effort. He would hit it, pound it, push it, roll it. Then he
would press it through the machine and keep turning that handle. It
seemed to really help him with his aggression.
Our therapist recommended that we have our 5-year-old
daughter make an "angry sheet." She should be encouraged to draw or
write what she felt like doing when she was angry, and encouraged to
get it all out. It was pretty scary, because she drew pictures of stamping
people, gouging their eyes out, shooting them, etc. It was amazing how
much better she felt afterwards. Then we went through the pictures together
and discussed which ones she could really do, and which ones she could
only think about doing because really doing it would hurt someone.
Get professional help whenever you are concerned or
run out of ideas on how to handle emotional problems. Mental health care
professionals have spent years learning how to help resolve these kinds
of problems, so let them help you.
My daughter and I both went to a wonderful therapist
throughout most of her treatment for cancer. My daughter was a very
sensitive, easily overwhelmed child, who withdrew more and more into
a world of fantasy as cancer treatment progressed. The therapist was
skilled at drawing out her feelings through artwork and play. She also
helped me with very specific suggestions on parenting. For instance,
when I told the therapist that my daughter thought that treatment would
never end (a reasonable assumption for a preschooler), she suggested
that I put two jars on my daughter's desk. One was labeled "All Done,"
and the other was labeled "To Do." We put a rock for every procedure
and treatment already completed in the all-done jar, and one rock for
every one yet to do in the to-do jar (only recommended if the child
is more than halfway through treatment). Then, each time that we came
home, my daughter would move a rock into the all-done jar. It gave her
a concrete way to visualize the approach of the end of treatment. She
could see the dwindling number of pebbles left. On the last day of treatment,
when she moved the last pebble over and the to-do jar was empty, I cried,
but she danced.
Most emotional problems that children develop as a
result of treatment for cancer can be resolved by professional counseling.
However, some children may also need medications to get them through particularly
rough times.
My daughter was doing really well throughout
treatment until a combination of events occurred that was more than
she could handle. Her grandmother died from cancer during the summer,
one of her friends with cancer died on December 27, then another friend
relapsed for the second time. She was fine during the day, but at night
she constantly woke up stressed and upset. She had dreams about trapdoors,
witches brewing potions to give to little children, and saw people coming
into her room to take her away. She would wake up smelling smoke. She
was awake 3 or 4 hours in the middle of the night, every night. Her
doctor put her on sleeping pills and antianxiety medications, and the
social worker came out to the house twice a month.
Teach children relaxation or visualization skills
to help them cope better with strong feelings.
Have reasonable expectations. If you are expecting
a sick 4-year-old to act like a healthy 6-year-old, or a teenager to act
like an adult, you are setting your child up to fail.
As often as possible, try to end the day on a positive
note. If your child is being disruptive, or if your feelings toward your
child are very negative, the following is an exercise that can end the
day in a pleasant way. At bedtime, parent and child each tell one another
something they did that day that made them proud of themselves, something
they like about themselves, and something they are lookiing forward to
the next day. Then a hug and a sincere "I love you" bring the
day to a calm and loving close.
A group of veteran parents compiled the following
checklist to help you parent your stressed child:
- Model the type of behavior you desire. If you talk
respectfully and take time-outs when angry, you are teaching your children
to do so. If you scream and hit, that is how your children will handle
their anger.
- Seek professional help for any behaviors that trouble
you.
- Teach your children to talk about their feelings.
- Listen to your children with understanding and
empathy.
- Be honest and admit your mistakes.
- Help your children to examine why they are behaving
as they are.
- Distinguish between feelings (always okay) and
acting on strong feelings in destructive or hurtful ways (not okay).
- Have clear rules and consequences for violations.
- Teach children to recognize when they are losing
control.
- Discuss acceptable outlets for anger.
- Give frequent reassurances of your love.
- Provide plenty of hugs and physical affection.
- Notice and compliment your child for good behavior.
- Recognize that the disturbing behaviors result
from stress, pain, and drugs.
- Remember that with lots of structure, love, and
time the problems will become more manageable.
Our children look to us to learn how to handle adversity.
They learn how to cope from us. Although it is extremely difficult to
live through your child's diagnosis and treatment for cancer, it must
be done. So we each need to reach deep into our hearts and minds to help
our children endure and grow.
|