We discovered Janis’s blog, Sneak Peek at Me, via her Twitter and immediately became fans of her friendly, generous tone and her terrific pictures. We knew she was all over the online special needs community connecting people and speaking out about the joys and challenges of raising a child with special needs. Her son, Austin, is 2.5 and is clinically diagnosed with Branchio-Oto-Renal (Melnick-Fraser) syndrome and has several complex medical needs. You can read more about him here.
Can you provide the basics about yourself?
I’m a single mom born & raised in Los Angeles. After graduating from college I spent some time living in NYC, Guadalajara, MX and eventually Dallas, TX – where Austin was born. Before having Austin I focused full time on my career as an Office Manager, those skills have served me well in dealing with Austin’s medical care. I can coordinate the heck out of his doctors. (I think I might scare them just a little bit.)
Can you tell us when you started blogging? And what was the focus in the beginning?
I officially started my blog just over a year ago in May 2009. I started writing regularly in 2007, during my pregnancy on a website for pregnant women, then I moved to email updates. I sent out a mass emails to family and friends with pictures etc. Finally I decided to put all the info and pics in one spot, it made more sense for people to come to me. My blog was basically started on a whim. But it was the best decision I made, I’ve met so many wonderful people through our blog.
Tell us about Austin, how is he doing?
Right now Austin is stable *knock on wood*. The good news he hasn’t needed surgery for over two years, but that is about to end. This summer he will be having his first major craniofacial surgery. This will be the first real “crisis” I’ve ever had to blog through and I am still trying to figure out how I will balance his privacy and the public’s curiosity throughout his recovery.
What is the best thing about blogging about your son and your journey? And what is your worst?
The best thing about blogging about Austin’s journey is that I can help bring awareness to others about the issues faced by families dealing with Special Needs. Hopefully that will eventually lead to a wider understanding and acceptance for those with Special Needs. The worst part of blogging is worrying about people thinking that I am exploiting my child. Also there is that worry about how he will feel about this 10, 20 years from now and feel about his every move being broadcast to the world.
What’s your biggest challenge with raising a son with special needs?
My biggest challenge…wow I feel like I have so many big challenges. Probably two biggest challenges are related and they are the financial strain and the fact that I am a single parent. Those two things would still be present even without Austin’s medical needs, but knowing that I carry the entire show alone is a struggle.
You recently wrote an excellent post on acceptance and tolerance …tell us why.
I recently wrote a post about our visit to a local barnyard petting zoo. Let me preface this by saying that during most of the year my son only leaves the house to visit family or go to the doctor. During the summer I tend to let my guard down about germs and their carries (other kids) and we do more stuff outdoors. This was our first summer outing to the petting zoo. He had a blast, but it was apparent that he was an “attraction” for the other kids. I noticed that parents were either oblivious to it or saw it and chose to ignore it. When I got home I wrote that post our of frustration. Before I hit Publish I reflected on how this could be used as a teaching moment. Once I got that perspective I was able to reword it and add some helpful links & resources. So far it has been well received by the mom blogging community and for that I am grateful.
You write for other sites, please provide links so we can share them with our community.
Besides special needs tell us what else you are an advocate for?
I’m also an advocate for breast cancer research, as my grandmother died 11 years ago from breast cancer. But generally my focus these days is on topics surrounding families affected by special medical needs and rare disease diagnoses.
What do you do for fun?
Before Austin was born I had an entire room devoted to my scrapbooking hobby, but that activity has been seriously curtailed in the past two years. Now I collect scrapbooking supplies! In my spare time I enjoy reading…books, fiction mostly. I also spend a lot of time with my family.
Please tell us anything else you’d like to share with our readers.
While the content and focus of our blog is awareness and acceptance of medical issues, I would love for people to understand that through all of that Austin is a fairly typical toddler and we do have fun. It’s not all gloom and doom every day….just maybe every other day. Oh also I tend to use some humor to get through tough situations.
We hope you will check out Janice’s blog and see what an uplifting and entertaining resource it is. We thank her for being our first featured blogger in our Around the Web series! Do you know a blogger or have a blog you’d like to see featured? Contact us!