LET’S GET

STARTED 1
This module covers
the following information:

Let’s get started

What are developmental disabilities?
Our children
Our family and support
Monitoring progress

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 LET’S GET STARTED
Materials
Flipchart, ball, Diagrams 1.01 – 1.04, pens.

Icebreaker
Welcome everyone and introduce yourself.

Throw a ball to a person in the circle, that person then says their name and
introduces their child, and answers a question about themselves (maybe
guide this: “What is your favourite food? How many sugars do you like in your
tea?”). Let each person have their turn.

It is important to manage expectations, so ask everyone what their hopes are

for these sessions. Clarify what will be possible and what may not. You may
also want to introduce some ground rules, such as not interrupting each other
when speaking.

Ask
“What you would like to get out of coming to the group?”

Write everyone’s answers on a flipchart. Encourage people to contribute.

Explain
“Our aim is to help you to understand your child and to build support networks
that will improve the care that your child receives in your community. This will
help your child to reach her potential. These sessions are not lectures, they will
be participatory and interactive. Please share your experiences.”

Let’s get
started
Know your
Next steps
child

Assistive
products Positioning

Our Eating and

community drinking

Togetherness Learning
and belonging to move

Everyday
Communicating
activities
Play

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 Present diagram 1.01 (previous page); explain this is the content of the
programme, and each bubble shows the focus of each session.

Explain
Explain that ‘treatment’ is not always medical, and includes interactive play,
gentle exercise and small changes to everyday activities.

Emphasise that the group is a space for everyone to learn more about
developmental disabilities, and share ideas and experiences that can help
others.

Explain
Explain what we will learn together today.

In Module 1 you will:

1. Introduce yourselves and your child to each other.

2. Understand more about developmental disabilities and how they can

affect children’s health, development and well-being.

3. Recognise some challenges and conditions associated with developmental

disabilities.

Facilitator Tips:
During this first session, caregivers may want to introduce their child and talk about
the challenges their child has. Allow for this and make a note of names for later in
the session when you talk more in depth about their stories and fill in poster 1.03.
This helps to avoid repetition later in the day and for you to move to discuss day to
day activities or hopes and dreams.

“ The following quotes show what other caregivers have valued from this
session:
“At the beginning of the group I didn’t like to take my child to my mother’s
house because I have a sister who has a child the same age as my son, but
now I do.” Parent, Colombia
“I have learnt what happened and how to care for my child, now I will not
listen to the unkind things other people say.” Parent, Uganda
“Here I have learned how to fight for my son’s rights, to exchange
information, to know what rights he has and to know how to fight for it.”

”
Parent, Brazil

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 WHAT ARE
DEVELOPMENTAL
DISABILITIES?
Ask
Ask the following questions and discuss as a group.

“Has anyone told you why your child is not developing as expected, or why your
child is disabled? What has the doctor or nurse, or traditional doctor told you?”

“What do your family or neighbours say about your child? Has anyone told you
that your child’s disability is caused by witchcraft or because you have done bad
things in your past?”

Discuss experiences.

Ask
Have you ever heard the words developmental disability? What do you think
causes your child’s condition?

Explain
Explain that developmental disabilities include damage to the developing brain
either during pregnancy, birth, or in the first few years of a child’s life. Often
doctors cannot know the specific cause because it could be any incident causing
an injury, infection, or restricted oxygen (perhaps during birth).

Explain that
developmental
disabilities are
a group of
conditions that
impact on the
development
of a child’s
function. Damage
to areas in the
brain may cause
problems with
movement and
posture, and often
communication,
feeding/ eating, CBM Adapted from CBM International 2012, How can
seizures, learning, you help your child with cerebral palsy (flipchart) available
and behaviour. at [Link]

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 Developmental disabilities include cerebral palsy, intellectual disability, sensory
impairments, congenital zika syndrome, microcephaly, down syndrome.

Present diagram 1.02.

Feeding problems: your child may have difficulties with sucking, swallowing
and chewing, which can cause gagging or choking. These difficulties may
worsen as children get older.

Communication difficulties: your child may not respond or react as other

children do. She may be floppy or lack movement, and may not have control of
her face muscles. Your child’s speech development may be slow, and she may
struggle to speak clearly. She may cry a lot, and initially you may find it difficult
to know what she wants, but in time your child can learn to point at things with
her hands, feet or eyes.

Learning difficulties: some children may have learning difficulties. Other

children may not, but their physical appearance can make them look less
intelligent than they are (eg. drooling, slow movement).

Seizures: some children experience epilepsy, fits, and convulsions.

Behavioral issues: sudden changes in mood are not uncommon. This can
be caused by your child’s frustration at not being able to do what they want
with their body. Over-stimulation, loud noise, and high-levels of activity can
cause your child to become frightened or upset. Your child will need a lot of
patience and support to overcome these difficulties.

Discomfort: your child may experience discomfort and pain. This may be due
to the stiffness in her muscles or her inability to move out of a position when it
becomes uncomfortable. Or it may be due to constipation or reflux.

Encourage the caregivers to share their experiences and ask if their own child
shows these symptoms.

Ask
Can other children catch developmental disabilities? Is it contagious?
No. It cannot be passed from one child to another.

Can developmental disabilities be cured?

No, but early help, therapy and learning together in this group can
help achild’s development and it can help their participation in the family
and community.

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 OUR CHILDREN
Activity 1
Display photos 1.03 a-d.

Ask everyone to walk around the room looking at the different pictures of
children with developmental disabilities. Give them enough time to look at
these and to discuss that no two children look the same. Each child is an
individual.

Ask
“Do the children look the same? Have you seen another child who looks similar
to your child?”

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 Describe the physical symptoms shown in the pictures.

Muscle stiffness: developmental disabilities may cause muscle stiffness which

can cause parts of the body to be rigid, slow down movement, and can cause
spasms. The parts of the body this affects varies from child to child, but it will
increase when the child is upset, excited, or in certain positions. Spasming is
often triggered by the positioning of the head.

Floppiness: floppy arms and legs are caused by low muscle tone. This
can make it difficult for your child to move or sit up without help, everyday
movements can be exhausting, and she may get tired very easily.

Uncontrolled movements: some children will have difficulty staying still and
stable, and may not be able to control their movements.

Poor balance: some children will have ‘ataxia’, which causes poor
coordination. It may be difficult to sit, stand, or use their hands. They may look
clumsy and fall over a lot.

“ In Bangladesh caregivers really valued looking at the pictures of children

with cerebral palsy. This was the first time most of them had seen pictures
of other children with a developmental disability, and many had never met
other parents of children with disabilities before. This activity stimulated
valuable discussion and encouraged story sharing.
“Initially, I thought my child may be cured by a doctor or traditional doctor.
Then I saw that he wasn’t cured... I understand more about the condition
[cerebral palsy] by participating in the training and as a result of this my
child has been developing. Now I feel less physical and mental pain.”

”
Parent, Bangladesh

Explain
Explain that there are other conditions associated with developmental
disabilities and that a child may experience one or many of the following:

• Poor eyesight/squinting

• Hearing difficulties

• Growth problems

• Dental problems

• Constipation

• Sleep problems

Ask
Ask if anyone has experience of caring for children with these conditions, and
explain that all will be discussed in detail throughout the different modules.

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 OUR FAMILY
AND SUPPORT
Activity 2
Give one image 1.04 to each family
Our support Barriers in the community

Community

Family
and friends

About us

Daily activities Goals and dreams

Allow plenty of time for this discussion as it is probably the most

important part of module 1.

Explain
Explain each week you will fill in a different part of the circle. Today you are
going to fill in the centre circle – about you and your child. This is a safe and
supportive space to learn and share, without judgement. By sharing with each
other you can support each other.

Draw the mother, father (if appropriate) and child in the center circle. Then
add 1-2 activities that you do and 1-2 hopes and dreams for your child. Next
week, you will fill more in about the rest of your family (in the second circle).

Ask
Ask everyone to share their story and think about the following questions:

“How do you feel about having a child with a developmental disability? What do
you hope for your child?”

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 Everyone can share as much or as little as they feel comfortable with, and use
any language they prefer.

This can be an emotional experience for some and may not be easy. If you are
not yet ready to share much, you can do so in future.

“ Caregivers of a child with a disability are more likely to report feeling

isolated and that they lack support than parents of children without
disabilities. These sessions offer valuable spaces for discussion, support and
connection.
“There are many children with physical disabilities in our village. I didn’t
know them before. As a result of coming the training, we have now got
to know each other... Everyone wants to know about the development
of each other’s children, and I can talk about my child’s health.” Parent,

”
Bangladesh

Summarise the time of sharing before moving on. For example, if it has been
an emotional experience for some, acknowledge their feelings. There will be
many experiences shared between them and remind them that they have the
opportunity and ability to support each other because of this, and that no one
should feel alone in the group.

“ Discussing similarities between their stories is valued by caregivers and

the activity with pictures of other children creates a lot of discussion and
sharing of stories in the group.
“I see the power of this group, this is one of the most important things, it is
good to know that there are others who have the same situation as you, that
gives you a greater strength” Father, Brazil

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 MONITORING
PROGRESS
Take Home Messages:
• Through our sessions we can make a big difference to the quality of life of our
children.
• Share what you are learning with the other people who are part of your child’s
life – family, friends, and neighbours.
• The earlier you start to help your child to learn, the more she can develop.

It is important that everyone understands the content so they can share it with
others. Sharing the information will probably require practice, so:

• Split into pairs or threes.

• Ask each person to explain to the others what developmental disabilities

are.

• Encourage them to give feedback to each other based on what they have
learned so far.

Ask
“What is one thing that you found most useful about coming to today’s session
and what will you share in your family?”

“Is there one thing you found less useful (if anything)?”

Encourage everyone to share what they have learnt today with a

member of their household.

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