The other night, during the virtual Back-to-School Prep Workshop I hosted, one mother shared exactly why she took valuable time out of her evening to join us:
"I want to learn how to be an advocate for my son."
Those words resonated with me because that was where I started out, too, in my journey raising my son Nathan after his cerebral palsy diagnosis. I often think back to that time in my life. It was, by far, the most painful, disorienting, and disempowering period of my life. Like so many of us as moms and dads, I was handed the diagnosis with no rule book or game plan.
Everywhere I went, this heavy phrase was used like a badge of honor: "You are your child's best advocate."
(Nathan, at age 4, in an adaptive chair, engages with an occupational therapist during a session.)
But what does that actually mean? I certainly didn't know, and no one took the time to explain it. Yet I was expected to function and make life-defining decisions while my mind was filled with questions: What am I actually supposed to do? What did the doctor say? What does that even mean?
I kept waiting for someone to explain my role in my child's life. I stepped into every lane, trying on the language floating around me from the professionals we saw.
It took years for me to finally ask: Who teaches us as parents how to navigate this new path?
That was when the answer became clear: no one.
Don't get me wrong. Some of the specialists we saw provided parent education, but it was always within their discipline and scope of practice. Multiply that by ten or more doctors, clinicians, and specialists throughout the childhood of a child with disabilities, and we end up with information from multiple sources that we must somehow piece together without the benefit of formal training.
Somewhere in the middle of trying to make sense of it all, we begin to understand the incredible responsibility we have to coordinate everything and be the parent our child needs. That is what being an advocate is really about.
Nathan and Christine delivering a talk to middle school students on how he communicates with the world)
Most of us did not plan to become advocates. But if you think about it, we do it every day.
An advocate is someone who speaks up, takes action, or works to ensure that their own or another person's needs, rights, and interests are understood and addressed.
When we stand up for ourselves, we are self-advocates. When we question an incorrect bill, ask for clarification at a doctor's appointment, negotiate for something we need at work, or speak up when someone is treated unfairly, we are advocating.
But advocating for a child with disabilities requires something different. We are navigating complex systems we may not understand while trying to protect someone we love.
To do that effectively, we need greater intentionality and less reliance on emotion alone.
Effective advocacy is a skill that can be taught. It helps us learn when to ask questions, how to gather information, what to document, who to contact, and how to communicate in ways that advance our child's needs.
(Nathan at a school community event using his AAC tablet device to communicate independently)
I am going somewhere with this discussion because, when it comes to raising a child with disabilities, few places test our mettle quite like the school system.
My son Nathan is nonverbal, has cerebral palsy, and depends on others to support him with his daily living needs. Throughout his school years, he left home around 7:30 in the morning and returned around 3:30 in the afternoon.
That is a long block of time to know nothing about your child's day.
Did he eat? Did he eat enough? Did he drink enough? If he came home not feeling well, did something happen? Had he been exposed to someone with a cold or COVID?
Sometimes a letter from the school nurse would arrive a week after an exposure. More than once, we learned that Nathan had been around someone who tested positive for COVID only after everyone in our home had already been exposed.
Every new school year, I felt a literal tightening in my chest. I braced myself for another slew of phone calls and doctor's visits where I would have to track someone down just to find out what Nathan had eaten that day.
How could I be an effective advocate for my son when there was an entire part of his life that I knew nothing about?
I started by sending a logbook to school and asking the staff to record certain information about Nathan's day.
It worked for a little while, until it didn't.
So I took the next step. I called an IEP meeting and asked to make the logbook part of the communication system between home and school. We wrote on the cover exactly what information needed to be documented.
That worked for a little while, until it didn't.
Eventually, I realized the problem wasn't just a lack of communication. It was the lack of a consistent system that made communication easier for everyone involved.
My Special Travel Companion — a home-school communication notebook designed to make daily tracking simple and consistent.
That realization led me to create My Special Travel Companion, a home-school communication notebook designed so the person completing it doesn't have to remember what information to include. The sections are already there, ready to be filled in.
The notebook allows me to track:
That was when my fear finally began to feel contained.
Today, Nathan attends an adult day program. He graduated from school last year, and the notebook continues to support communication between home and his program.
When we go to the doctor and someone asks, "How long has he had a reduced appetite?" I can look back through the notebook and pinpoint when the change began.
When I am asked how much liquid he has been drinking, I have a record.
When I am asked about his bowel movements, I can provide specific information.
That gives me peace of mind.
But there is another benefit I did not fully anticipate.
The first day Nathan rode an adaptive tricycle, someone wrote about it in his book. When he came home, I excitedly said, "You rode a tricycle today!"
He looked at me as if to say, "How did you know?"
That moment reminded me that good communication does not only help me track Nathan's care. It also allows me to be part of his day and talk with him about experiences he may not be able to tell me about himself.
Part of being an effective advocate is having systems in place. One of the most important is consistent communication between home and wherever your child spends their day.
You cannot advocate effectively for what you do not know.
Whether your child is nonverbal, has a developmental disability, is too young to explain what happened during the day, or simply needs additional support, a reliable communication system can help you stay informed, recognize changes, and respond before small concerns become bigger problems.
We shared My Special Travel Companion during our recent back-to-school workshop because it is one practical tool that can help parents move from uncertainty to informed, intentional advocacy.
You can purchase the notebook through The Special Needs Mama Bear® online store. It is also available on Amazon.
Another important part of effective advocacy is having people in your corner who understand this path.
Mothers in the Mama Bear Den community — because you do not have to do this alone.
The Mama Bear Den is our free membership community, created for parents who want practical resources, meaningful support, and connections with others who understand what it means to raise a child with disabilities.
Inside the Den, families can access resources such as the Back-to-School Workshop Parent Workbook Starter Kit and connect with a community that understands the questions, concerns, and responsibilities that come with advocating for a child.
Our August 19 Back-to-School Prep Workshop recording will also be uploaded to the Den early next week, giving members the opportunity to revisit the conversation and learn from the perspectives shared by our special educator, speech-language pathologist, and parent community.
If you are ready to approach this school year with a clearer plan, better tools, and people who understand, I invite you to join the Mama Bear Den.
Ready to stop holding your breath this school year?
Start by putting a communication system in place with My Special Travel Companion, then join the Mama Bear Den to access additional resources, the upcoming workshop replay, and a community of parents who understand this path.
Because effective advocacy begins with knowing what is happening, having the right tools, and remembering that you do not have to do it alone.
