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Lesson Plan
Working through Grief when Parenting a Disabled Child

HS 6453.55 Strategies in Health Education Delivery
Elizabeth Batten
Fall, 2014


October 26, 2014



Texas Womans University
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LESSON PLAN

OVERVIEW

Title: Working through Grief when Parenting a Disabled Child

Health Topic and
Intended Audience: This workshop will be presented to parents of disabled children who use
respite services at St. Lukes United Methodist Church through the P.M.
Pals program. These parents are well-educated, generally in a good or
excellent financial situation, between 25 and 45 years of age, and strong
advocates for their disabled children.

Parents of disabled children do not just experience one loss, but a series of ongoing
losses. They first face the loss of the child they expected to have. Later, as the child grows
bigger and more difficult to manage, they face the loss of social life, or the expectations that their
social life will be like that of parents of non-disabled children. They also face losses every time
their child fails to meet a milestone, such as learning to read, learning to walk, passing a
standardized exam at school, going on a first date, applying for college, and graduating from
high school.

Additionally, parents of disabled children need to be continuing advocates for their
children in order to ensure they achieve the highest level of functioning they can. This involves
multiple re-assessments of what the child can achieve and when. This process can involve grief
as well when parents have to repeatedly accept that their children are not achieving what they
had hoped they would.

Experiencing repeated losses can be a great psychological stressor. In one study,
researchers found that more than twice as many caregivers of disabled children suffer from
serious psychological distress as caregivers of nondisabled children (Goudie, Narcisse, Hall, and
Kuo, 2014).

Working through each of the five stages of grief defined by Kbler-Ross contributes to
the whole process of self-examination, leading to both internal and external change (Moses,
1987, p. 2). Parents often resist the process of grieving because it is not acceptable to their
family, neighbors, church, and friends (Moses, 1987, p. 3). Additionally, parents often believe
that feeling and expressing negative feelings about ones child is taboo (Moses, 1987, p. 6).

Setting: The workshop will be presented in a conference room or classroom at St.
Lukes United Methodist Church. The workshop will take place during
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the monthly P.M. Pals respite program, so that parents do not have to
find childcare in order to attend. There will be between 5 and 8
participants. The workshop will be one hour, from 6:30 to 7:30 p.m.
Snacks will be provided.

Estimated Time: 1 hour

I. Introduction (10 minutes)
-sign up sheet
-facilitator introduction
-participant introductions
II. Hand out the brochure on grief (2 minutes)
III. Talk about losses (10 minutes)
-participants talk about their personal experience with loss
IV. Talk about grief (5 minutes)
-brainstorm about grief as a positive and a negative
V. Talk about the Stages of Grief (25 minutes)
a. Shock and Denial (5 minutes)
-brainstorm response
b. Anger (5 minutes)
-brainstorm response
c. Bargaining (5 minutes)
-brainstorm response
d. Depression (5 minutes)
-brainstorm response
e. Acceptance (5 minutes)
-brainstorm response
VI. Evaluation (8 minutes)

Materials needed: Newsprint pad and stand or whiteboard.
Markers (one box of multiple colors).
Enough pens (10) and paper (one packet or 10 notepads) for all
participants.
The classroom or conference room should have enough chairs and tables
for workshop members to sit and write during the workshop.
Snacks (chips and dip, vegetable and fruit trays, and a dessert tray, as well
as iced tea.)
Cups, plates, napkins, and trash bag for snacks.
10 copies of brochure handout
Evaluation forms
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Guiding Health Education
Theory or Model:
The Social Cognitive Theory (SCT) considers the relationship between the environment,
the individual, and their behavior (Gilbert, Sawyer and McNeill, 2011, p. 62). SCT says that an
individuals environment can impact his or her behavior, but an individual with self-efficacy can
overcome obstacles and even change the environment (Gilbert et al., 2011, p. 62). Some of the
constructs of SCT are useful in working with the process of grief. For example, Situation refers
to the positive and negative thoughts about the behavior (Gilbert et al., 2011, p. 62). Grief
itself can have both positive and negative aspects. Self-efficacy, another construct used in SCT,
is a goal of working through grief. By working through the stages of grief, an individual can
move from feeling hopeless and out of control to feeling strong and capable. Reinforcements
such as praise from others or support in times of grief can be effective in helping an individual
through the grief process, as can Emotional Coping Responses. Ultimately, the grief of a parent
of a child with a disability is a social process, not an individual one, in that the loss experienced
by the parent is a loss in comparison with normal parents. Thus, SCT provides an excellent
framework for working through grief.

Goal: Grief involves the mourning of a significant loss. Elizabeth Kbler-Ross posited that the
process of grief involves moving through five emotional stages. These stages are (1)
shock and denial; (2) anger, resentment and guilt; (3) bargaining; (4) depression; and (5)
acceptance(Hall, 2014). The goal of this workshop is to help parents of disabled
children recognize and acknowledge grief in their lives, and to use this knowledge to
create meaning and relieve some of the associated psychological stress.

Objectives and Learning Domains

Process objectives
1. Get at least four people to participate in the workshop by providing a convenient place and
time.
2. Ask participants to evaluate their satisfaction with the course in terms of how much they
learned and whether they feel they gained some stress relief.

Outcome objectives
1. At the end of the workshop, 90% of participants will correctly identify the five stages of grief
by listing them on the provided evaluation form. (Cognitive).
2. During the workshop, all participants will spend at least one minute discussing a personal
experience related to one of the stages of grief (Affective).
3. At the end of the workshop, at least half of the participants will answer yes to the
evaluation question: Will you change your behavior in any way as a result of attending
this workshop? (Psychomotor).
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Procedures:

I. Introduction (10 minutes)
a. Sign up sheet:
Pass around a sign-up sheet. Request names and emails in order to provide further information
after the workshop, and provide information on future workshops.

b. Facilitator Introduction:
Good evening, my name is ____ and I am the group facilitator for this workshop. The title of the
workshop is Working through Grief when Parenting a Disabled Child. The purpose of the
workshop is to introduce you to concepts of grief and loss, to help you recognize them, and to
encourage you to use this knowledge when you are facing stress as a parent of a disabled child.

c. Participant introductions:
Some of you already know each other, but lets go around the group for a brief introduction.
Please tell everybody your name, your childs age and disability, and something you enjoy doing
in your very limited spare time!

[Go around the group asking each person to give their introduction].

II. Hand out the brochure on grief (2 minutes)
This brochure talks about grief and parents of disabled children. It shows the basic concepts that
we are going to discuss today.

III. Talk about losses (10 minutes)
Lets start out by talking about grief in general. What is grief? According to the dictionary, grief
is intense emotional suffering caused by loss. As parents of disabled children, we experience
multiple losses, and therefore we experience recurring bouts of grief.

Some of the losses we experience as parents of disabled children are a loss of our dreams and
expectations for our children, a loss of our expectations for ourselves as parents, and a loss of
time and care for ourselves. For example, before we had our children maybe we saw ourselves
as the greatest Little League coach in town, but now we know our child will never walk, let alone
play baseball. Or, we dreamed that our child would be a great scientist and make an important
discovery; now we just hope our child will be able to make change at the drugstore. We also
experience loss because all of our vacation time is taken up by trips to this doctor and that
hospital, instead of taking a family trip to Disneyland or Hawaii.

Lets go around the group and everyone tell about a disappointment or loss related to your
childs disability.
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[Proceed to ask each person in the group to tell about one loss they have experienced. When
each person finishes their blurb, ask what feelings they experience when they think about this
loss.]

IV. Talk about grief (5 minutes)
In our society, many of the emotions associated with grief are either taboo or uncomfortable. So
it is important to recognize that grief is normal, that it is a natural reaction to many situations,
and that we need to acknowledge and process our grief in order to move forward in life.

Lets brainstorm about grief.
[Have the group brainstorm to answer the following two questions]:
1. What do you think of when you think of the word grief? [Write down answers on newsprint
pad under title Grief].
2. Is grief positive or negative? Why? [Allow time for verbal responses and discussion].

V. Talk about the Stages of Grief (25 minutes)
According to Elizabeth Kbler-Ross, there are five stages of grief. These stages are listed in
your brochure. They are Denial, Anger and Guilt, Bargaining, Depression and Acceptance.
Some other theories add Anxiety and Diminished Problem Solving to this list, but in this
workshop we will stick with Kbler-Ross original five stages.

Lets work through these stages one by one:

a. Shock and Denial (5 minutes)
When we first hear of something unexpected happening, we can experience shock and denial.
We cant really wrap our heads around the new situation or information. It may be a serious
threat to our world-view, our sense of how the world should be.

Denial can be a positive emotion when it is used as a way to protect ourselves from
overwhelming emotions. It gives us time to adjust, examine our world view, and to find strength
and resources to help face the new challenge.

For parents of children with a disability, denial can also be a good thing in that it helps you push
your child to his or her limits. Nonetheless, when taken too far, it can be harmful and lead to
more stress. Its important to be able to recognize when you are truly in denial and to make an
effort to reframe your point of view on the issue.

Lets talk about our experiences with shock and denial. Think of a time when you experienced
this in relation to your child. [Facilitators example: When my child received an IQ result of 52.
I did not believe the results were correct. I thought of a number of reasons why they could be
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wrong. The positive aspect of this is that I didnt just give up on my childs learning. However,
later on I had to admit that my child does have an intellectual disability.]

[Proceed around the room and ask each parent to give a brief response. Write each response on
your news print under the title Shock and Denial].

b. Anger (5 minutes)
Often we feel angry and at the same time guilty about the fact that the child we have is not a
normal child and not able to do normal activities. This happens over and over again,
especially if our children have normal friends or siblings. We constantly compare lives and
are angry that our child is left out, or feel guilty that we resent having to spend extra time and
money for our children to do what everybody else is doing.

Dr. Ken Moses, a psychologist, says that anger is the medium through which a parent redefines
fairness and justice. In other words, when you first recognize a loss, you feel it is unfair, and that
makes you angry. This is part of the process of redefining your world view to accommodate the
abrupt and traumatic change in your life brought on by loss.

Think of a time when you experienced this in relation to your child.
[Proceed around the room and ask each parent to give a brief response. Write each response on
your news print under the title Anger, Resentment and Guilt].

c. Bargaining (5 minutes)
Bargaining helps you maintain a sense of control of your or your childs life. You think if you
can only find the right treatment, the right diet, the right doctors; if only you work with your
child or repeat yourself more often, she or he will get better, will talk, will read, will walk, will
interact with others. When this doesnt happen, you feel that you no longer have control. You
may feel anxious and desperate to ramp up your search for the right formula. A lot of
unscrupulous practitioners take advantage of parents when they are in this stage, increasing grief
rather than resolving it. It is very hard to accept that your powers as a parent are limited. This
can lead back to feelings of guilt and anger.

Think of a time when you experienced this in relation to your child.
[Proceed around the room and ask each parent to give a brief response. Write each response on
your news print under the title Bargaining].

d. Depression (5 minutes)
When we recognize that we cannot control an aspect of our childs disability, we become prone
to apathy and depression. We might ask ourselves, Whats the point of doing anything, nothing
seems to work. In some ways, depression as part of the grief process is like hitting the wall
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when running a marathon. We have come so far and done so much, but we cant quite see the
finish line. Were exhausted, depleted. Thats when we need the most outside support. We
need people to cheer us on, shore us up, and let us know how far weve come. This is how we
redefine our sense of competence as parents, our sense of strength and accomplishment as
individuals, and ultimately our sense of self-worth. All those other parents take their kids to
soccer games, have friends for sleepovers, help with homework, schedule museum visits to learn
about science and history, and were just happy to get our kids underwear and socks on in the
morning.

Think of a time when you experienced this in relation to your child.
[Proceed around the room and ask each parent to give a brief response. Write each response on
your news print under the title Depression].

e. Acceptance (5 minutes)
This is the time when you have the feeling that everything is going to be okay the way it is. You
can handle this new challenge and life will be better for it. You have successfully shifted your
view of yourself and your child in the world and it gives you a sense of meaning, a sense of
purpose. Acceptance does NOT mean that you dont wish things were different. But acceptance
means working with what you have. Rather than focusing on your childs disability as
something to be cured or vanquished, you accept that your child is disabled and you the parent
will help him or her negotiate the world in whatever way works for him or her. You may realize
that your child will probably not get a degree in mathematics, but you continue to encourage
your child to learn as much math as possible. You figure out how your child learns and what
works best for him, and are okay with using that pace rather than what you had hoped for.

Think of a time when you experienced this in relation to your child.
[Proceed around the room and ask each parent to give a brief response. Write each response on
your news print under the title Acceptance].

VI. Evaluation (8 minutes)
Ask participants if they have any questions before ending the workshop. Thank them for
attending and invite them to fill out an evaluation worksheet.


Evaluation: Participants will be asked to complete an evaluation form to determine if
they can identify the stages of grief, if they feel they have learned
something from the workshop, and if they will change their behavior as a
result of the workshop.

Anticipated Problem(s)
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And Solution(s): Problem: Parents may not want to give up their respite time in order to
Solution: Provide snacks so parents do not have to find a way to eat
before arriving. Keep the workshop to one hour in length so parents still
have an hour of respite left to do personal activities.
Problem: People may be uncomfortable with the topic and therefore less
likely to share their stories.
Solution: Keep the group small (no more than 8 participants).



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References
Cantwell-Bartl, A. (2009). How psychologists can assist parents of children with a disability.
Retrieved from http://www.psychology.org.au/inpsych/assist_disability/.
Drench, M.E., Noonan, A.C., Sharby, N., and Ventura, S.H. (2012). Psychosocial aspects of
health care (3
rd
ed.). New York: Pearson.
Gilbert, G.G., Sawyer, R.G. and McNeill, E.B. (2011). Health education, creating strategies for
school and community health. Boston: Jones and Bartlett.
Goudie, A., Narcisse, M-R., Hall, D.E., and Kuo, D.Z. (2014). Financial and psychological
stressors associated with caring for children with a disability. Families, Systems &
Health, 32, 3, 280-290.
Hall, C. (2014). Beyond Kbler-Ross: recent developments in understanding of grief and
bereavement. Retrieved from
http://www.psychology.org.au/publications/inpsych/2011/december/hall/.
Moses, K. (1987). The impact of childhood disability: the parents struggle. Retrieved from
http://www.pent.ca.gov/beh/dis/parentstruggle_DK.pdf.
Reinsberg, K. (2014). States of grief for parents of children with special needs. Retrieved from
http://www.abilitypath.org/areas-of-development/delays--special-needs/states-of-
grief.html.


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EVALUATION FORM
WORKING THROUGH GRIEF WORKSHOP
Please list the five stages of grief:
1.
2.
3.
4.
5.
****************************************************
Please circle the best answer for the following questions:
1. How much did you learn as a result of attending this workshop?
(one is nothing at all, five is a great deal)

1 2 3 4 5

2. How much did this workshop reduce your stress level?
(one is nothing at all, five is a great deal)

1 2 3 4 5

3. Will you change your behavior in any way as a result of this workshop?

Yes No

3a. If you answered yes to number 3, how will you change your behavior?
OR
3b. If you answered no to number 3, why not?




4. What topics would you like to see addressed in future workshops?