Be the voice:

A Guide on how to advocate for your child

Amanda Deyette

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 Letter of introduction

On behalf of your child I would like to say ‘Thank you’ for taking an interest in

their education and wellbeing. The information in this guidebook is designed to help you

prepare for an Individualized Education Plan (IEP) meeting by reflecting on the hopes and

dreams of your child as a priority.

The information provided throughout the guidebook are answers to frequently

asked questions in relation to IEP’s, the rights of a child and the rights that you have as a

parent. As a parent you are the voice for your child. You have the right to ask questions,

ask for another perspective and to be fully involved in the decisions made by the

educational platform. When your child’s voice can not be heard, you are their voice.

We have provided questionnaires, documents, activities and information pamphlets

regarding different subjects to make the education process fun and enjoyable for you and

your family.

We hope the information provided throughout the guide will help develop a

supportive relationship between your child’s educational team and yourself. Welcome to

the team.

Index:
https://powerlanguage.net/blog/2019/09/24/powerlanguage-conference-2019-welcome-everyone/

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 Table of Contents

Frequent Questions for IEP’s? ………………………………………………… 4

Goals and Objectives …………………………………………………………… 6
Questions to ask during an IEP ………………………………………………… 7
Systematic view ………………………………………………………………… 8
Systematic view Questionnaire ………………………………………………… 9
Systematic view questionnaire for your child …………………………………. 11
This is Normal …………………………………………………………………. 13
Stages of Grief …………………………………………………………………. 14
Self Care reflection ……………………………………………………………. 16
7 pillars of self care ……………………………………………………………. 17
I Am Important ………………………………………………………………… 18
Parental considerations ………………………………………………………… 19

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https://alsadotorg.wordpress.com/2019/08/14/frequently-asked-questions-faq-about-our-research-program-experimental-therapies-and-more/

What is an Individualized Educational Plan (IEP)?

An IEP is a legally developed program to help a child in the primary or secondary level
with physical or intellectual difficulties (special needs) to receive specialized instruction
and services that may be required to develop the competencies required for success.

What kind of services are available? Can my child qualify for all services?
There are many services that are available and depending on the need of your child specific
services will be recommended. Examples of services that may be beneficial to your child
are:
• Extra time during exams • Use of technology
• Noise reduction headphones • An SCC during class
• Quiet space for work • Sensory related tools

Who will be participating during the IEP

meeting?
The meeting usually consists of one or more members
of the multidisciplinary team (special educator,
teacher, psychoeducator), the administrators, the legal
guardian of the child and if possible, the child should also be involved to develop the plan.
https://www.parentingspecialneeds.org/article/calm-
your-nerves-know-what-to-expect-at-an-iep-meeting/

What type of approached is used to develop the IEP?

The IEP’s are based on a systematic view, which means the interrelated subsystems is
considered (family, personal, academic and social factors) for the child and is based on a
solution centered approach.

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 Are IEPs important to have?
If your child is having difficulties IEPs are important.
They focus on the strengths of your child and
measurable goals are determined with recommended
accommodations/ modifications to ensure progress in
your child’s learning environment.

Does my child keep the same IEP all year?

An IEP is individualized, therefore if your child meets the agreed terms and goals the IEP
can be modified to reach further goals. If you feel that you child has reached the goals set
for him/her you may request a meeting with the administrators to make a new IEP. An IEP
should be updated every 3 months, but realistically speaking the budget and time allotted
in a school rarely allows this to happen.

How are the goals and needs of my child determined?

What are the steps?
To develop the best possible plan for your child to help
him/her succeed steps are needed to determine the priority
needs. The steps are:
• Observe/ gather and analyze the information
• Set the direction
• Plan the IEP (establish objectives, needs, record the
information)
• Application of the intervention (implement the
strategies, evaluate the progress)
http://www.steppingstoneskenya.org/n
• Review the IEP ew/welcome/individualised-education-
plan/

‘The IEP is not the student’s entire educational program but

rather a road map containing the mot important stops along
the way to the final destination of learning and inclusion’
- Author Unknown

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 https://globechamber.blogspot.com/2019/01/developing-marketing-goals-and.html?spref=pi

An IEP is broken into three main steps, the need, goal and objectives. The need is usually
a priority in one of the levels based on Abraham Maslow’s Hierarchy of needs
(physiological, security, love and me belonging, esteem and self-actualization). Goals and
objectives will help keep the focus on the desired outcome. The steps are broken down to
explain what will happen to reach the desired goal.

Needs:
• Based on the child’s struggles or difficulties
• Based on the idea that each behavior serves a purpose
• Written as: verb + behavior wished to be modified

Goals:
• Must be written for the client https://www.simplypsychology.org/maslow.html
• Must be written in a positive manner
• The focus is what you want the person to accomplish
• Aims at increasing, maintaining or diminishing a behavior
• Normally a year period time frame
• Written as (name + verb in future tense + desired behavior)

Objectives:
• Broken down steps to reach the
goal
• Shorter time frame, approximately
3 months
• Very specific
• Derived from the goals (short /
long term)
• Results are observable through
• Written as (name + action verb in
future tense + success indicator)
• SMART

https://www.hydratemarketing.com/blog/the-importance-of-setting-smart-goals

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https://lipglossandcrayons.com/iep-meeting/

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 Systematic view
Adopting a systematic view during an IEP means taking into consideration all the factors
that are likely to influence your child’s learning. The four factors to consider are:
individual, family, social and everything school related (Education Quebec). The level of
interactions between the factors has an impact of the learning your child will experience.

Individual: It is important to take into consideration the impairment (cognitive, physical,

motor) of your child to make the necessary adaptations to reduce or eliminate the obstacles
to help develop competencies for your child.

Family: studies has shown that family dynamics and their level of contribution has a
positive impact on your child’s learning. By understanding the family life, the
multidisciplinary team can adjust and support the student/parents by recommending
community-based services if needed.

Social: Having knowledge of services that are offered in the community for your child or
yourself (ex: support groups) could have a positive impact on helping your child obtain
their objectives.

School related: Understanding the relationship between your child and the teachers may
increase or decrease the level of stress and learning opportunities for your child. Being
aware of the school environment and making sure they are aware of your child learning
style will help the educators adapt to your child’s needs.

https://www.edupliance.com/blog/post/4608

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 Systematic View Questionnaire
To understand the systematic factors in your child’s environment, we
provided you a questionnaire to reflect on. Use this space to write
questions, concerns or gather information to have a visual representation
of the environment that surrounds your child.

What are the individual factors of my child that must be

taken into consideration when making an IEP? https://www.flickr.com/photos/carlos_gq/146930036
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_____________________________________________________________
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How can my family support/encourage my child through their learning

process? What can we improve on?
_____________________________________________________________
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Are there any services in my community to help us on our journey? Write

the name, contact information and brief description of the service.
_____________________________________________________________
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What do I know about the school environment of my child?
_____________________________________________________________
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What support system does my child have?

_____________________________________________________________
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What do I want for my child’s future?
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Additional information or questions

________________________________________________________________________
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 Systematic View questionnaire for my child
Perspectives differ from one person to another and sometimes its
interesting to get the point of view of others to get a full understanding
of the world around them. If possible, we encourage you to ask these
questions to your child and compare them with your answers.
Depending on the age and level of comprehensibility of your child you
may have to change the wording. You will be surprised with what you
can learn from your child. Use this information to express your opinions
https://www.flexjobs.com/blog/post/how-
and concerns during the IEP meeting. answer-most-difficult-interview-questions/

What are the subjects you have most difficulties with? Why?
_____________________________________________________________
_____________________________________________________________
_____________________________________________________________
_____________________________________________________________

What are your opinions on how we help you with your homework?
_____________________________________________________________
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_____________________________________________________________

Would you change the way we help you? How?

_____________________________________________________________
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How would you feel about meeting new people who are specialized in the
subjects you are having difficulties with?
_____________________________________________________________
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Who are you favorite teachers and why?
_____________________________________________________________
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Are there any adults in your school that you do not like or feel comfortable
with? Why?
_____________________________________________________________
_____________________________________________________________
_____________________________________________________________
_____________________________________________________________

You mentioned that you have difficulties with ________________, do you

have ideas or would like to try something to help you with this subject?
_____________________________________________________________
_____________________________________________________________
_____________________________________________________________
_____________________________________________________________

How can we support you when you need help? Agenda? Schedules?
_____________________________________________________________
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‘Every child has a different learning style and pace,

not only capable of learning but also capable of
succeeding’
-Robert John Meehan
This is normal

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 This is Normal
As a parent you want the best for your child and are willing to do whatever possible to help
your child succeed. From the moment you found out that you were having a child you begin
to imagine the future as a family and the process of planning for their future begins. This
is normal.
As your child grows and develops you notice that your child is acting different from peers
their own age. You might have shrugged it off
believing that all children behave and develops at
different levels or you might have made an
appointment with the pediatrician. Both
solutions are normal.
When you found out the development of your child
is not at par with his peers and testing was
recommended the feelings you felt were normal.
Once the testing was complete and you were told the
diagnosis of your child you might have been
overwhelmed with emotions and burdened yourself
with thoughts and questions. This is normal.
As your child grew and continues to grow did you
experience frustrations throughout the day towards
yourself, your child and the environment? Do you
feel that you need to be strong for your family? Does
many of your questions begin with the word WHY?
This is normal. https://www.counselingrecovery.com/

What you are going through is called the stages of

grief. You had dreams and wishes for your child and you may feel that those are no longer
possible. This is a grieving process, and this is normal.

‘Embrace your grief. For there,

Your soul will grow.’
- Elisabeth
Stages of grief: Carl JungKubler-Ross

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 Stages of Grief: Elisabeth Kubler-Ross
Elisabeth Kubler-Ross (1926-
2004), a Swiss- American
psychiatrist, was best known for
discovery of the 5 stages of grief,
which later was better known as the
‘Kubler-Ross model’. The Kubler
Ross model was first discussed in
detail in her internationally best-
selling book in 1969 titles ‘On Death
and Dying’. Kubler-Ross had a
difficult childhood from the start
being a triplet weighing a little over
2 pounds at birth, she developed a passion for the medical profession in her mid teens with
much resistance from her father. At the age of 16 she left the family home and worked a
series of jobs which brought her to volunteer working in hospitals and helping refugees
during World War II. When the war ended, she volunteered to work in communities who
was severely affected by the war. The artwork of butterflies carved onto the walls at
Maidanek concentration camp located in Poland, signifies those who were facing death.
The artwork influenced her studies and her choices throughout her life.
In 1962 she moved to the United states with her husband to teach at the University of
Colorado Medical school. Upon verifying the curriculum, she was surprised to find no
information regarding death and dying. It was one day with her class that a 16-year-old
client with Leukemia lashed out in anger that everybody was asking medical questions,
and nobody was asking about her personal life. This was a curiosity starter for Kubler-
Ross.
In 1965 she moved to Chicago to accept a position at the University of Chicago’s medical
school. A project began with theology students involving seminars and interviews with
individuals who are dying. In 1969, Kubler-Ross wrote ‘On death and Dying’ by using the
information gathered in the interviews and research to identify the 5 sages of grief that
people experience: denial, anger, bargaining, depression and acceptance.
Throughout her life Kubler-Ross published over 20 books and in 1977 she funded an
educational retreat called Shanti-Nilaya located in California. Around the same date period
she opened the Kubler-Ross Center to help patients with AIDS.
In 1995, after a series of strokes that left her partially paralyzed in a wheelchair she retired
to Arizona. In 2002, she moved to hospice care and peacefully died of natural causes with
the love of family and friends by her side on August 24, 2004. The National Women’s Hall
of Fame inducted her for her research on grief and grieving in 2007 (Elisabeth Kubler-Ross
Biography).

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https://preciousjourneygifts.ie/what-are-the-
5-stages-of-grief/
The five stages are natural responses to grief and loss,
it is important to remember that everyone is different,
and no two reactions are the same. The stages are just
a pathway to help you identify your emotions and
possibly help you cope with life. There are no
prescribed order or time frame of the stages and its
ok to go back and forth from one stage to another.

Denial: Do you feel overwhelmed, shocked, numb

and the world seems to have no meaning, you might not see a reason for going on and you
struggle to get through each day? These are normal feelings and ‘is natures way of letting
in only as much’ as you can handle. As you begin to accept the new reality, you are
beginning the healing process

Anger: It is normal to get angry at yourself, the people around you

or a higher being when you are grieving for your child’s future or
your dreams that you had for them. You may begin asking questions
or trying to find someone to blame for what has happened. Anger
has no limits, and the pain that you feel is real. Be angry and hurt,
allow yourself this time to process what you feel you have lost.
Your anger will begin to fade, and pain will take its place.
https://mamatridoc.com/2018/06/30/pain-cave/

Bargaining: The feeling of guilt is often related to the bargaining stage; you feel guilty
and begin the ‘if I only…’questions. You begin negotiating with a higher power or the pain
that you feel. Its difficult to advance in life because you feel that you can do more by
searching for answers.

Depression: Once in the present moment you begin to feel empty and alone on the inside.
You hide your feelings and your disappointments. You might push people aside thinking
they don’t understand what you’re going through. You eventually realize that things are
going to be different and you begin to find joy in your daily life. This is an important step
in the healing process.

Acceptance: This stage is accepting the new

reality and realizing this is the new norm. You
begin to adjust by finding strategies,
relationships and investing in the life of your
child. You may still be sad and continue to go
through different stages throughout your
child’s life as milestones are not met, remember
this is normal (Kessler).
https://www.medtronicdiabetes.com/loop-blog/5-
stages-of-diabetes-acceptance/

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 Self care: Reflection
Taking care of your family is probably on the top of your
priority list and having a child with special needs takes a lot
of preparation and planning. Finding the balance act
between the different roles that you play as a parent,
professional and an individual is often difficult which
normally results in your own self care put aside.
Self care is important to be able to fully give to those around
you. The family will survive for a brief period if you are not
there. It might seem that they cannot, but they will figure it
out. We encourage you to put an X next to the appropriate
box that you can relate to and use the box to add additional
information. Take the time to read the 7 pillars of self care to have a better understanding
on what you can do for yourself.
I am a:
 mother
 daughter
 professional
 sister

How much time per day can I do

something for myself? How much
would I like?

 less than 20 minutes

 20-30 minutes
 30-60 minutes
 More than 60 minutes

Why can’t I find time for myself?

 Cleaning
 Taking care of the family
 Studies/work

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 7 Pillars of Self Care

‘Self care is actually comprised

of 7 different pillars that when
combined, results in physical,
mental, emotional, spiritual,
psychological, social,
environmental and professional
well being.’
Self care =resilience

https://isfglobal.org/1110-2/

Knowledge and health literacy: researching and wanting to learn about living a
healthy lifestyle, not listening and depending on others for information.

Mental Wellbeing: not scared of asking for help from a friend, co worker or professional
when you need it or using tools and strategies to improve your self esteem, satisfaction and
optimism.

Physical activity: finding some time during your day for some physical activity whether
going to the gym, walking the dog or putting on your favorite tune and having a dance
party.

Healthy eating: being aware of the foods you ingest will play a role in your over all
wellbeing in the present moment but also for the future. Make the right choice for you and
do not hesitate to do some reading or research vitamins, organic foods or new recipes is a
way to self care by being mindful what you put into your body.

Risk avoidance and mitigation: limit or avoid substances such as alcohol, drugs and
tobacco as well as toxic substances that you put on your skin (sunscreen, insect repellent).
By avoiding situations that make you uncomfortable and anxious you are showing yourself
that you matter and showing yourself self care.

Good hygiene: self care in hygiene could be as little as showering

everyday, using deodorant or brushing your teeth. For others self care
could be the day at the spa or finding the time for a spa day.

Rational use of products/services: if the use of recommended

pills or services such as the gym, psychiatrist or other professionals
help manage your physical and mental well being than continue doing
so (Cam’s Kids, 2020).
https://www.strengthinheart.ca/blog/self-care

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 I Am Important
Are you wondering why information regarding self care, grief and questions about you as
well as your child is in this book? Any ideas? Take a few minutes to reflect and write down
your answers in the space provided below:
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
An important part of being the voice of your child in the IEP process and their personal
life is self reflection. We are obligated by society to play by rules and norms depending on
the roles that we play. You, as a parent, fight for the right for your child to have the best
education, tools, strategies and resources available to make the learning process easier. If
you are tired or feel alone in the process how are you going to always give your 100% to
be the voice of your child? We have listed some questions for you to reflect on.
• Have you thought about your own personal needs, care and opinions?
• Your child counts on you to help them when they are down or has hurt themselves,
who do you count on?
• Do you feel that you have someone to count on?
• Who’s your life support?
• Are some days harder than others?
• Do you sometimes ask questions related to guilt or your parenting styles?
What are some questions that you ask yourself?
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
We want you to know that we are here for you and these questions are normal. YOU as an
individual are important. You are more than a parent with a child who has a diagnosis. Its
essential for you to have a support system and to know that its ok to have off days and to
be sad.

‘I am a person. I am Special. I am important’

- Author Unknown
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 Parental Considerations
The planning of an IEP meeting is just as essential for the parents as it is for the educators.
As the information provided in the pages regarding the Systematic View the child’s life in
all categories will help the facilitate the learning process. We have provided a checklist list
of considerations to prepare for the IEP meeting.

Things to prepare or reflect:

 Documents (medical records, previous IEPs)
 Questions to Ask document
 List of strengths and difficulties of your child
 What are my child’s goals?
 What are my goals for my child?
 List of resources available in your community
 Do I know my child’s rights?
 What are my rights as a parent? https://www.canstockphoto.com/illustratio
 Systematic view questionnaire n/3d-business-man-with-word-plan.html

 Reflections on past meetings (what went well? Improvements?)

During the IEP meeting:

 Keep and open mind
 Ask questions
 Take notes
 Be the voice of your child
 Stay true to your values and beliefs
 You are part of the team
https://www.canstockphoto.com/illustration/3
d-business-man-with-word-plan_3.html

After the meeting:

 Reflect on the information on the IEP
 Introduce the ideas to your child
-questions/answers/opinions
 Implement the IEP

https://www.canstockphoto.com/illustration/3d
Remember: -business-man-with-word-plan_3.html

The way to success is one step at a time.

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 References:

Cam’s kids, 2020. ‘The Seven Pillars of Self Care’.

https://www.camskids.com/supportresources/the-seven-pillars-of-self-care/

Education Quebec, ‘Individualized Education Plans: Helping Students Achieve Success’.

http://www.education.gouv.qc.ca/fileadmin/site_web/documents/dpse/adaptation_serv_co
mpl/19-7053A.pdf

‘Elisabeth Kubler-Ross Biography’, April 2, 2014.

https://www.biography.com/scientist/elisabeth-kubler-ross

Kesler, David. ‘The 5 Stages of Grief’. https://grief.com/the-five-stages-of-grief/

PowerPoints from class

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