Latinos Doing Their Thing
When I first met Janis Marie we were both just two single girls living in two of the largest cities in the US; she in LA and I in Chicago. Our almost daily chats consisted of clothes, career and men; not necessarily in that order. I’m sure back then, with a future full of possibilities she never once imagined that just seven years later she would become a voice for children with special needs and their parents.
Becoming Mom to now 2 year old Austin changed her life in more ways than the average Mom. Austin, with his beautiful deep brown eyes and unruly curly hair, was born with Branchio-oto-renal Syndrome (BOR), a rare genetic disorder that affects 1 in 40,000 births. This, by default and necessity, made Janis become an non-medically trained expert in the world of special needs children; specifically Austin’s needs.
In May of last year, finding it tedious to attempt to keep family and friends updated on Austin’s health and progress via email messages, she made the decision to start a blog; a one-stop-shop for updates and pictures. A year later, that little blog, Sneak Peek at Me, created for family and friends, has evolved past being a place to keep up to date with Janis and Austin; it is now a place where parents with special needs children can go for information and to find others who relate to their day-to-day lives. Her blog has also taken her to other levels of advocacy with requests to write for other outlets. Her contributions can be found at She Posts, 5 Minutes for Special Needs, Hopeful Parents, Kidz, Complex Child and RARE Blog (Children’s Rare Disease Network).
How does Janis feel about her accidental step into the role of advocate? She says, “I enjoy it. I enjoy collaborating with others and learning new things. But mostly I just enjoy being able to pass on that knowledge and empower other parents. So many parents do not realize that they need to advocate for their children, or feel powerless to do so.”
As John Lennon said, “Life is what happens when you’re busy making other plans” and for Janis this is certainly true. Though she’s passionate about many things, life has assigned her this role for a very important reason. So what’s next? ”Since I didn’t set out to find this role, per se, it is hard to say where it will lead. Maybe someday, if I get over my fear of public speaking that would be a good place to start. I would also like to write a book – not about my son’s medical struggle, but about how I managed to survive it as a single mom. We still have a long way to go, but when things settle down…yeah a book sounds about right.”
You can get to know more about Janis, Austin and the world of special needs children by visiting the following links: