Sunday, July 26, 2015

What is Typical Summer when you’re an Atypical Family?

Juggling schedules in the school year is a challenge, but summer time brings on a new challenge – how to enjoy the precious few sunny and warm days that New England offers?  We’re happy to share what makes our family happy.  
A brief overview to paint the scene we are family consisting of Mom, Dad, Alexis (age 9) and Jessica (age 8). On the outside, we look like an average family with two working parents raising two kids, so why do I call us atypical? Our kids didn’t turn out ordinary, they turned out extraordinary.
·        Alexis – considered deafblind but really low vision / severe profound deaf in both ears, g-tube fed, undiagnosed genetically, catheterization to fix heart defect (ASD), developmentally delayed, CPAP user, and a longer list of other super-special parts. 
·        Jessica – auditory processing disorder, open heart surgery to fix heart defect (ASD), cognitive disorder not-otherwise-specified, communication delay not-otherwise-specified and borderline ADHD.
The constant cadence in the summer for the past six years – Alexis’ extended school year program. But it’s the flavor of life that we add around her schooling that I think is interesting to readers.

We like connecting with families similar to our own:  starting in 2009, we have attended the CHARGE Syndrome Conference. Alexis is undiagnosed genetically, but she’s most closely related to CHARGE Syndrome, so we go to learn. The conference is every 2 years and we have families we regularly see there – and sometimes it’s in fun places like:
Phoenix Arizona 2013!
Orlando Florida 2011!  
We like traveling and experiencing new things in the world. 
We’ve gone to Acadia National Park
We’ve gone to East Hill Farm
We’ve gone to Dream Day on Cape Cod
We like doing fun things locally too! 
We often have season passes to Storyland NH
Or sometimes Alexis goes with a caregiver to pet ALLIGATORS:
Or sometimes Alexis has to have surgery and the only time to arrange it is over summer break

We couldn’t do all of this without a great sense of humor.  I always end up leaving something important at home, so we’ve made it a habit to locate the nearest big box store or grocery store to stock up on the items when we arrive. I do adhere to some of the techniques I wrote about on – and that definitely helps out!!!  It takes a lot of the brain power out of packing because I’ve practiced the routine many times now.  

Summers aren’t always easy.  What you don’t see in what I’ve documented above is the hours to research hotels that will have enough space, airplane tickets that aren’t at horrible travel times (and won’t break the bank), arranging and rearranging help to watch both girls during weeks they are out of school and we’re working and the constant of juggling medically complex kids.  And being resilient enough to handle nights like these from 2011. 

So for every picture you see of us smiling on vacation, there is probably an hour of work  – but when you get to hear Alexis’ giggle and Jessica’s squeal of excitement – I know it’s all very worth it.

Hey - forgot to add originally, if you like this article and want to tune into stories from some other awesome families - check out:

Summer Blog Party: Summer Activities for Kids who are Blind

1 comment:

Amber Bobnar said...

They really are the happiest kids! And so lucky to have a mom who will work hard to make them smile. Hopefully we can join you at Storyland this year!