“Each time he dresses as his favorite superhero, talks about... become a fireman or tells me he loves me, I...

“Each time he dresses as his favorite superhero, talks about growing up to
become a fireman or tells me he loves me, I am reminded why I fight.”
The Traigle Family
How to be an Advocate
for Your Child
Written by Rhiannon Traigle Photo by Karen Gros Photography
Winter 2009
What is an Advocate?
ust as fall began to arrive in October
with relief from the hot Louisiana
summer, my husband Ray and I sat on
a bench at a local playground. We watched as
our 10-year-old daughter Reagan and sevenyear-old son Riley laughed with delight and
reveled in youth and freedom. As Reagan
attempted to swing into the clouds, Riley
yelled out to us, ‘watch me!’ He climbed
the jungle gym, jumped across the rickety
bridge, squealed as he slid down the slide and
ran around to start the process again.
For most parents on the playground, this was
an ordinary afternoon. For us, extra-ordinary
would be a better description. Like I often
do now, I closed my eyes that day and tried
to capture the moment like a photograph. I
wanted to remember each second of it, every
detail and the happiness it brought. I wanted,
well want, to remember what it is like to see
my son run, jump and climb before Duchenne Muscular Dystrophy robs him of these
abilities and eventually his life.
It seems like only yesterday Ray and I took
our beautiful baby boy home from the hospital, elated to give Reagan a brother she
would be able to love, play with and growup with. During the first five years and three
months of Riley’s life, we were happy, and
we were what I like to call, ‘in glorious ignorance.’ We dreamed, as most parents do,
about what sports he would play, what college he would attend, when he would marry
and how many children he might have. Little did I know that shortly after Riley’s fifth
birthday, those dreams would be replaced
with agony, grief and desperation to save
my son’s life.
Before the 2006 Christmas holiday, Riley’s
pre-kindergarten teacher and a school physical therapist urged me to take him to the pediatrician. Riley had been unable to keep up
with classmates on the playground and complained of being tired when walking across
the schoolyard. We left the pediatrician’s office with a referral to a pediatric neurologist,
but I still believed nothing was seriously
wrong with my son. However, on January
24, 2007 Riley was diagnosed with Duchenne Muscular Dystrophy (DMD), a rare ge-
If you look in a dictionary, you will get a definition similar to this, an advocate is any
person who supports or defends another by speaking, arguing or pleading for their
needs and rights.
Prairieville resident Sandra Trammell’s seven-year-old daughter Mila was diagnosed
with autism. Sandra is involved in various organizations such as Partners in Policymaking, LaTEACH, and she founded the Ascension Autism Support Group. She has
devoted her time to advocating for her daughter. “I have reinvented myself,” Sandra
said. “I take jobs where I can drop everything if the school calls.”
Being an advocate for your child can take on many different forms. You may not be
able to devote as much time to advocacy as other parents, but you can do something. It is up to you to decide how, when and where your efforts will be focused.
Advocacy at its finest is doing the best for your
child and yourself.
netic disorder affecting primarily boys. Life
as we knew it forever changed.
My memories of receiving his diagnosis
are blurred. Through tears, my husband and
I stared in shock and disbelief at the perfect little boy in front of us. We were told
between the ages of 8 and 12 he would be
in a wheelchair, as a teenager his heart and
lungs would begin to fail, and he would not
live past his early 20's. Currently, there is no
treatment and no cure.
Since before Riley was born, I have spent
my career helping others. I have fought for
abused and neglected children, helped families of children with disabilities, counseled
children with mental disabilities and helped
hurricane survivors put their lives back together. I have been fighting for complete
strangers. Now, I was fighting for my own
son and had never felt so lost, hopeless and
disconnected from the world. I didn’t even
know where to begin.
Within the first week of Riley’s diagnosis, I
scoured the internet for information. I began
reaching out to anyone who would listen. I
posted ‘my story’ on every internet site that
had anything to do with DMD. I immediately began calling local agencies and asking
for help there, too. But everywhere I turned,
I kept getting the same question, “What
do you need?” My answer was always the
same, “I don’t know; I just need help.” At
this point, I only knew DMD was going to
take my son, and I couldn’t stop it.
During my desperate attempt to find help,
either I got lucky or God put me in the right
place at exactly the right time. One of my
internet posts led me to two of the most
wonderful influential women I have ever
met—Pat Furlong and Lori Ware. These
two women are both mothers who know
the pain and heartache caused by DMD,
and they both chose to fight back. Through
them I learned there is hope for my son and
all boys with DMD. I learned fighting for
my son would be difficult, but I could give
him a life better than I ever expected. They
showed me how I could make a difference.
I became an advocate. And by sharing the
journey I and other parents have experienced, I hope your journey as your child’s
advocate will be at least just a little easier.
Parents are
natural advocates
You are the best advocate for your child because you know your child better than anyone else.
Pat Furlong, Middletown, Ohio resident and
founding president and CEO of Parent Project Muscular Dystrophy, lost two sons to
DMD but continues to advocate for a cure.
“Advocacy, by definition, means to influence
outcomes,” Pat said. “Parents are ‘naturals’
in terms of advocacy. They want the best for
their children and will do whatever is necessary. Parents do this from the moment
Winter 2009
Rhiannon Traigle at the nation’s
Capital in Washington D.C.
in February 2009. Rhiannon
was visiting for an Advocacy
Conference organized by Parent
Project Muscular Dystrophy.
(Right) Riley and Dr. Brenda
Wong. Dr. Wong is his neurologist at Cincinnati Children's
Hospital Medical Center in
Cincinnati Ohio.
a child is conceived in simple and complex
ways. Their advocacy agenda may be as
simple as a change in diet or as complex
as working on legislation to change federal
or state policy. Parents who advocate for
their [children] realize that a single voice is
heard and that can make all the difference
in the world. One young man with Duchenne said it best, ‘Mom, if you won’t fight
for me, who will?’”
Every parent should ask themselves, “If
I don’t fight for my child, who will? Who
would I expect to do a better job?”
Create a support system
Parents who
advocate for
their children
realize that a
single voice is
heard and that
can make all
the difference
in the world.
Winter 2009
As much as we would like to consider ourselves super moms and dads, the truth is we
cannot do it all alone. Having a child with
special needs brings about a unique set of
challenges. It is OK to ask for help. It is
also OK to take care of yourself and take
a break.
Find a support system of others to help you
through your journey. This may be through a
support group, clergy, school system, medical personnel, family, friends, spouse or other
parents of children with special needs. When
I need to cry or vent, I turn to my mother.
When I need someone to help with medical
appointments, my husband is there. When I
need the latest information on clinical trials,
I connect with other parents. Friends have
organized fundraisers and events to support
Riley and research to cure DMD.
Take into account not everyone will be enthusiastic about your cause. Even family and
friends may not understand your fight. Let
people help where they are capable, and accept limitations of others who cannot help.
Do not measure your success by the amount
of tasks you accomplish, but by doing the
best at what you can.
Have a plan
and get organized
Whether you are advocating for medical
treatments, financial assistance, education
services or changes in law, in order to effectively advocate for your child’s needs,
create a plan.
1. Ask yourself questions. What are my
child’s current needs? What are my child’s
short-term and long-term goals? What is it I
am hoping to accomplish?
2. Write it down. Create a list of what you
are striving to achieve for your child and a
list of questions you need answered.
3. Get organized. File copies of all medical and school records and other important
documents. Keep lists of contacts for service
providers including specific names of people
who assisted you, so you know who to contact in the future.
4. Be prepared. Bring documents that validate factual information with you to meetings.
5. Take notes. Keep written records of
meetings and phone calls in case they need
to be referenced in the future.
6. Be creative. Remember there is often
more than one solution to a problem. If no
one else has the solution you are looking for,
suggest your own.
Create awareness
Public awareness creates a strong foundation
for successful advocacy. At every opportunity, talk to people about your child and what
you are advocating for. You are creating understanding and acceptance that facilitates
change; and by promoting your cause, you
are allowing others to share in the efforts
that will afford better opportunities for your
child and other children.
Lori Ware, special education teacher in West
Monroe, is the mother of seven-year-old Seph,
who was diagnosed with DMD. “Advocating
alone is putting the cart before the horse,”
Lori said. “Without knowledge and awareness, effective advocacy cannot happen.”
We help all kinds of kids learn every day, but we’ve always
thought that special needs kids are just that - special. We
can help them overcome their own unique set of challenges to achieve whatever goals they’ve set, and we do
it in their home where they are most comfortable.
Give us a call today and let’s start helping the
special kids in your life, together.
For many years, it seemed families of boys
with DMD had to be resigned to the inevitable outcome. Through advocacy and awareness, science has progressed and possibilities for treatments and even a cure for boys
with DMD are on the horizon.
There may be many occasions you will become irate and frustrated in attempts to do
what you believe is best for your child. This
is a natural reaction and parents have every
right to be upset with broken systems, unjust
laws and roadblocks to getting help. Anger
often fuels action, but positive outcomes are
the result of positive attitudes.
When trying to apply for services provided
by the state, I was told Riley may not qualify
because he did not yet ‘look or act disabled.’
Needless to say, I was furious. All I could
think about was lashing out at the case manager. In this situation, and in every other
exasperating situation since, I have learned
pleading my case in a professional,
Call Today!
[email protected]
Winter 2009
The doctors are experts
in their field; but I’m the
expert about my child.
factual and composed manner yields better
results. Despite my anger throughout my
thorough discussion with the case manager,
I kept my composure and Riley qualified. As
for getting services for her son Davis, Lona
said, “You catch more flies with honey. Find
a way to get what you need by getting them
into your corner.”
Never Give Up
Navigating the many various systems for
children with special needs is difficult. Fighting for change is even harder. It is a fact you
will be denied, rejected and ignored. Frustration, depression and hopelessness are words
commonly understood by those of us in this
struggle. But the truth is, services come and
go, laws change, solutions are available and
advancements are made.
Baton Rouge resident Kodi Wilson’s threeyear-old son Braden has a rare mitochondrial
disorder known as Leigh’s disease. Braden
was not expected to live past two. Kodi’s
battle for Braden’s needs has been difficult.
But for moms like Kodi, it is her son’s diagnosis that drives her.
“My strategy is about the kids that follow
us,” Kodi said. “My approach on how to fix
the problems is for other families as well.”
I too am continuing to fight for not only my
son, but for all children with special needs.
My journey as an advocate is not any easier
today than it was when I began two years
ago; but today I don’t feel the level of agony,
grief or desperation I felt then.
Today, those feelings are being replaced
with a sense of accomplishment and satisfaction. I will never stop being sad Riley
has DMD, but each time he dresses as his
favorite superhero, talks about growing up
to become a fireman or tells me he loves
me, I am reminded why I fight. Each time I
meet a parent of a child with special needs,
I am reminded I am not alone. Although our
struggles may be different, our mission is the
same. Advocating for our children individually may make a difference, but together we
are unstoppable.
Winter 2009
Become an Expert
Beginning your journey as your child’s advocate will not be easy. You may be
expected to understand the special education system, disability laws, medical
treatments and services provided by a number of agencies. Becoming an expert
will not happen over night, so learn what is necessary first and take one step
at a time.
Read scientific and medical journals with the latest information available. Search the internet, but be cautious the information is from a reliable source.
Contact agencies and service providers to learn what is offered. Most agencies have websites or pamphlets of information you can refer back to when needed.
Study state, federal and education laws affecting your child.
Know your rights and responsibilities.
Attend conferences and seminars. Some may be hosted by
professionals and others may be hosted by parents with a
wealth of experience and information. Many of these events are
created for medical personnel, researchers and social service
workers, but are open to the general public. By attending conferences and seminars, you can meet others with common interests
and speak face-to-face with experts.
Ask questions and seek answers. Don’t be afraid to call your
doctor, school, special education director or a researcher
across the globe. If those you contact are unable to answer the
questions you have, continue searching for someone who can.
Make connections with other parents and adults with disabilities. They understand your journey and are often the
most willing to help.
Lona and Jared Collins became experts when their 20-month-old son Davis
was born premature with a rare genetic disorder called DiGeorge Syndrome
and with a heart defect called Truncus Arteriosus. For the first 15 months of
Davis’ life, he lived in hospitals. He was flown back and forth from his hometown in Labadieville to Baton Rouge and Boston for multiple surgeries and for
the fight for his life. The Collins made it there mission to become experts about
their son’s medical condition. When asked about her experience Lona said, “It
is 100 percent my job to know everything going on with Davis. The doctors are
experts in their field; but I’m the expert about my child.”
Because of Lona and Jared’s efforts, when the doctors were baffled, they
worked together to find solutions. By making themselves experts on Davis’
medical conditions, the Collins made educated decisions about their son’s