Our summertime bubble

Jodi Shenal by Jodi Shenal Additional Needs

Jodi Shenal

Jodi Shenal

I'm a stay-at-home mom with two amazing children. My son is on the Autism spectrum and my daughter has a rare genetic disorder and multiple disabil...

Sunny days at the park and on the beach…Community summertime festivals…Vibrant displays of fireworks…They’re all facets of the summer season that families typically enjoy.

Once school is out, outdoor activities and crowded places beckon us to come and join in the festivities.

With a life that’s anything but typical, and living in somewhat of a bubble, these are all ventures that my family tends to avoid.

When the school year draws to a close, my son is thrilled that his online homeschool courses are done until August. Sleeping in and having more time for music and other creative outlets makes for a happy teenager.

Being on the Autism Spectrum, noisy, busy places and blazing heat don’t meet his standards of fun.

For my eight- year-old daughter with multiple disabilities, an inability to regulate her body temperature in extreme climates limits our time spent outside.

Overheating is a sure-fire seizure trigger, and we prefer to remain overly cautious.

Sure, we could go to the park, or even the pool. With the South Carolina sun beating down, we’d need to get there super early to find a shady spot to fend off the draining humidity.

And the crowd. With holiday bedtimes falling a little later, and the staggering time it takes to get us ready, packed and out the door, no one is leaving our house early enough to accomplish that feat.

We attempted a beach trip last summer.

Unfortunately, my daughter is highly accustomed to her SleepSafe bed, and will not sleep a wink in any other location.

Nowhere. Not even in the car. Her complete lack of sleep led to my husband and I being awake all night with her.

Being that my son loves the water and long car trips listening to music, we are reluctantly planning another beach trip this summer.

Fearing that her interrupted rest (another seizure trigger) would lead to serious issues if we stayed, we returned home after one night. Once back in our bubble, slumber was restored and we were all peacefully back in our comfort zone.

We are apprehensive and worried, but we will once again place one foot outside of our bubble. We ALL deserve a family vacation.

He and his sister deserve the opportunity to be kids and to experience the sand and crashing waves at their feet.

We won’t simply jump in our car and go…meticulous planning and organizing will come first. We’ll tirelessly research wheelchair accessible locations. We’ll search for music shops and fun, indoor activities we can do together.

We’ll carry along a multitude of necessary essentials for our trip. Our cargo will include: an abundance of medications, a pop-up bed/tent to mimic the safety bed, favorite toys and an oxygen tank.

We’ll have a pulse oximeter, headphones, a NutriBullet, diapers and more in tow. The fundamental pieces of our bubble will travel with us.

Summer is a time of year that our family still revels in, despite the different lifestyle that we live.

Mornings at home are filled with cuddles on the sofa with my daughter…Afternoons are spent playing in her ball pit in our blissfully air-conditioned living room.

Evenings become “movie nights” with my son, brimming with documentary films and baked sugar cookies.

Our routine is a bit more relaxed during this time of year; we enjoy life at a slower pace for a while.

Most importantly, I cherish the respite from all the school germs while we’re on break.

Families that have children with special needs find ways to make it work; we’re creative and resourceful.

Ours may not be a conventional summer break, and that’s okay. At the end of the day, the only thing that matters is that we’re all together.

Precious memories can still be made within our bubble.


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