3 life changing skills I learned to advocate for my loved one with special needs
How a last minute decision to attend a communication workshop provided life changing skills for this Mother caring for her daughter with special needs
How Our Journey Begins
When I received the diagnosis that my child had special needs, little did I know I would be put into
situations that required me to be the expert in so many areas. Until that day, I relied on my Dr.s.,
schools, agencies to be the experts in their respective areas. I didn’t question or worry myself with
trying to be the expert. They all should know best; Right? Well what I found out was; Wrong! They
cannot possibly be the experts on everyone and everything about each person.
Growing up, I was the person who would have stress when the teacher called on me. I was the one that
would be sick to my stomach before going to school if I was expected to do a speech or presentation in
front of a group. I was the one who would do anything to avoid a challenging issue or conversation at all
cost. I was shy and would characterize myself as an introvert.
My Defining Moment
So when the Dr. came to me and stated that they did not know much about the challenges my child
would face, I was devastated. “What do you mean you don’t know? You are the experts, Right?”
Unfortunately that was my first experience in life where I realized the answer was, No! As I stared at
that innocent child in the NICU, that I chose to bring into this world, I knew I owed this child all of my
heart, soul and dedication to finding out all I could. At the time I had no idea what that commitment to
my child would mean or what journey I was about to embark on. All I knew was that I better get over
my own insecurities for the sake of advocating for this precious child.
In the past 16 years since starting this journey, I would say the hardest thing to overcome was my fear of
public speaking and communicating tough issues with all of the different agencies that I was now thrust
into by circumstance. I found that advocating is not easy. The first time I had to take all I had learned
and try to convey that with confidence, I found myself physically ill, my heart racing, face getting flush,
butterflies in my stomach. I knew that how I presented myself, the words I spoke, and the information I
was about to present could make or break how well the outcome would be for my child. Through this
learning curve of advocacy I found that the word Advocate didn’t mean I have to do this alone, or that
it’s me against the world for the best interest of this child. I needed to view the individuals sitting across
from me at the school meetings, medical appointments, or community mental health agencies as
interested and equally vested in my child’s well-being and potential successes.
I had attended so many conferences over the years, most of which contained a lot of the same
information. Therefore, when I was invited to attend the Michigan Assisted Living
Association Conference in Lansing, MI to listen to the founder of Speak So They Listen, I have
to admit, I was on the fence. I would need to take time off from work at the last minute and it was over
an hour drive. But my decision to make that trip that day was life changing for me. I only wish I
would have had that training 16 years ago and hundreds of meetings earlier.
Finding Life Changing Solutions
Speak So They Listen addressed many of the challenges that an Advocate faces when communicating
on behalf of their loved one. Effective, kind, respectful communication is literally the backbone of a
successful Advocate and Provider.
1. How to prepare and conduct a meeting where a difficult issue must be discussed.
2. What can I do so that I can alleviate nervousness and deliver a confident, credible, persuasive message?
3. How do I sound to others receiving my message?
4. What do I want them to see and hear when I speak?
5. What does my body language say about the information I am presenting?
6. What tools can I use to make sure the meeting is productive?
7. How can I set a tone of wanting to work and brainstorming as a team?
8. How can I better communicate for a more positive outcome?
I learned so many positive things about myself and how I have the power to change how I present
myself without the physical stress. I learned the tools and techniques I can use to present myself in a confident, assertive and meaningful way in order to receive the most productive outcome. I will never look at another uncomfortable meeting as a bad thing.
Speak So They Listen has raised the bar for me as an Advocate for my child. After leaving that session, I felt empowered.
There is a better way…..
Just think about how much could be accomplished for our loved ones with special needs if parents,
guardians, school staff, community mental health staff, assisted living staff, medical professionals,
therapists and administrative staff would all learn these effective tools for working together more
effectively for the better good of the person(s) we are trying to serve? Speak So They Listen can
change the way we all communicate! It changed the way I will communicate. I only wish I would have
attended this training sooner in my journey of Advocacy.