Your Story. Your Voice. Be Heard.
Cynthia Lockrey shares her insights and experience as a patient advocate and her patient advocacy work. Blog posts include topics such as patient storytelling, working with healthcare professionals and advocating for children.
Many of us get into advocacy because of necessity, not choice. Very few of us have the option of dipping our toe into the advocacy journey. Rather, we’re forced to jump fully in to advocate for ourselves or a loved one.
While urgency is often the force behind advocacy, it’s important to remember that advocacy is a long-term game, not about short-term wins.
Read MoreI have to admit, I struggle each holiday season. While, on paper, the wacky clothes days at school, holiday get togethers and family outings, seem like fun, the reality is they’re incredibly dysregulating for my autistic child and our family.
Each December is a month of meltdowns, irregular sleeping patterns, and early pickups from school (from more meltdowns). The change in routine, that took months to establish, causes chaos not fun.
I know I’m not alone in carrying a heavy emotional load over the holiday season.
So, what can be done to not only support our kids, but also make sure we, as caregivers, don’t fall apart along the way?
Read MoreWhen I was pregnant, I followed all the rules. I didn’t eat soft cheeses, sushi, luncheon meat, limited my caffeine intake, and more.
My first pregnancy resulted in a miscarriage – which of course I blamed myself for. I doubled down on following the rules for subsequent pregnancies, wanting to do everything “right.” The result: two babies and one more miscarriage.
Even when you follow the rules, the outcomes can be different from your expectations.
Read MoreFor way too many years, I’ve stressed about getting my child to school on time. I felt this huge burden to watch the clock, get out the door at a certain time and arrive at school before the morning bell.
While this is a struggle for many parents and caregivers, for those of us raising kids with anxiety, ADHD, autism and other disabilities, it can be a Herculean task. While yes, we do have unicorn days when the stars align and we make it to school on time, too often we have to navigate many stressors to get out the door.
If you can relate to what I’m saying, read on. If you’re shaking your head thinking that’s all children, definitely read on as I’m about to pull back the curtain of a typical morning in my household and why getting to school on time is such a challenge.
Read MoreAs a communications consultant, I write a lot of annual reports for non-profits, corporations and governments. While over the years they’ve evolved to be less text heavy, there’s still a common piece missing. People are forgetting the WHY.
Besides the financial data (which I’m not sure anyone reads), a typical annual report includes a summary of key programs and services. Sadly, some are still a dumping of information versus using storytelling to bring the programs and services to life.
Too often I see organizations wanting to share WHAT they did and HOW they did it, forgetting about the WHY.
Read MoreWe’ve finally made it to the end of the school year with two months of summer ahead of us. While some parents rush to sign their kids up for camps, activities and outings to fill the days, I’m embracing the free space.
As mom of an autistic child, the school year is tough! It’s full of hurdles to navigate from sun up to sundown.
By the time summer rolls around we’re all emotionally and physically exhausted. There’s no mental capacity left to schedule more activities.
Embracing a structure free summer gives us all the break we so desperately need.
Read MoreWhen you’re passionate about a cause, it’s easy to say yes when asked to help. But saying yes too quickly is a sure-fire way to drain your batteries.
This is a hard lesson that took me years to learn. I had a difficult time saying no, thinking, If I didn’t jump into help who would.
But when volunteer overload began to affect my physical and mental health, I realized it was time to take a step back and be strategic on how - and where - I spend my time.
Read MoreWhen I first sat down to write this article, I titled it – How to Avoid Caregiver Burnout. But as I was reflecting on my own personal experience supporting my autistic child and adult brother, it became clear this just isn’t possible. However, there are some things you can do to minimize the impact on your mental and physical health.
Read MoreOver the years as a speaker and advocate, I often have people say to me – oh I know my child is (insert condition) but I don’t see the point of getting a diagnosis. Or – I know I have (insert condition) so I don’t need a diagnosis.
Each time I hear this it takes all my effort to keep my internal voice from screaming at them – having a diagnosis matters!!
In the age of Dr. Google, we have a wealth of information at our fingertips. While it’s great to be able to educate yourself on a condition, it’s important to remember you are not a medical professional (and even if you are, you need an unbiased opinion).
Read MoreOne of the perks of being a keynote speaker is attending a lot of conferences. As someone who’s committed to continual learning, I always stay to learn from the other speakers. This not only helps me connect with the audience (reading the room before I speak) but also keeps me current in my public relations practice.
A big learning for me – one that I implemented a couple of years ago, but still see many clients using - is removing the word stakeholder from my vocabulary.
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SPEAKING & WORKSHOPS
Cynthia Lockrey is a change maker + communications expert.
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