‘Even though your vacations may not look or go as you planned make it happen.’: Mom of special needs kids says ‘let go of your vacation expectations’

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“Dear Exhausted Mom of Littles,

As I relaxed on the beach in the shade, with my feet up reading a book, I realized I needed to tell you something… vacationing is not always going to be as hard as it is right now.

Courtesy of Julie Hornok

When my daughter Lizzie (diagnosed with autism), my son Noah (diagnosed with multiple life-threatening allergies, anxiety, and OCD), and my son Andrew (typical but strong willed) were young, vacations were scary and exhausting and never, ever went as planned. I would dream up the perfect vacation I thought they could handle, and then spent weeks planning every detail of our trip, in hopes this would be ‘the one’ which actually felt like a vacation.

For Lizzie, I wrote out the perfect, personalized, social story with actual pictures of the condo we would stay in, pictures of the exact beach where we would swim, pictures of the restaurants where we would eat, pictures of the car ride, pictures of how many times the sun would go up and down, and most importantly to her, a picture of the bed she would sleep in. The planning and social stories absolutely helped ease her anxiety, but nothing ever went as planned, and I was exhausted before we began.

For Noah, I planned out every meal and called the restaurants in advance to make sure they could accommodate him, but there was no way to plan for cross-contamination.

Courtesy of Julie Hornok

Even with all this extra planning, difficult things still happened on our vacations that made me question why I even tried:

I held my daughter sobbing (actually both of us were sobbing) next to a very public elevator for over an hour while she had a massive meltdown, because we made one too many transitions.

I pulled her off a dangerous 10-story high rooftop ledge that wasn’t pictured in our VRBO booking.

She eloped from a spray water park, only to find her across a busy street splashing inside a public fountain.

I listened to two hours of her saying, ‘How about that beach house?! How about that beach house?! How about that beach house?!’ when there was no way to explain to her every house she saw on the drive wasn’t the one we were staying at.

I spent the entire night sleeping with my hand on my son’s chest to make sure he was still breathing after an allergic reaction from cross-contaminated food at a restaurant.

I cried for hours after my son had an anxiety attack, and we couldn’t figure out if it was also an allergic reaction.

I jealously watched as my friends interacted with smiles as their kids enjoyed rides at a small amusement park. Lizzie only wanted to walk around licking things and refused to ride any rides.

Courtesy of Julie Hornok

Now, looking back over ten years later, it was worth the risk, extra strain, and tears. Here are four tips to help make your vacations worth it while your kids are young:

1. Change your mindset to big picture perspective and marathon goals.

The exhausting vacation experience you have now is building the skills your child needs to create beautiful family memories later. You will need a vacation from your vacation while the kids are young. It’s just the reality of having a special needs child. We don’t have the luxury of spontaneity. For even a chance of success, we must plan out every detail. Then the actual experience itself, even after meticulous planning, takes close monitoring to ensure the safety of our kids. There is no sitting on the side and watching. There is no letting our guard down for even one minute. We must be one-inch away from our kids at all times to ensure safety. The mental energy required around the clock to keep our kids safe is even more intense in unfamiliar settings. But, by forcing ourselves to slowly and methodically nudge our kids out of their comfort zone, we are enabling them to grow. These small steps of growth will someday add up to delightful family moments you will enjoy even more because you worked so hard to achieve them.

2. Plan a vacation which keeps your jealously in check.

In many circumstances, traveling with extended family or friends doesn’t work, and it’s okay. As a mom of a special needs child, it is hard to see the other kids your child’s age experiencing life to the fullest while your child is limited. Be honest with yourself on how much watching and comparing you can do without it robbing your joy. Allow yourself to set boundaries if you do travel with others. For example, ‘We will stay in a separate condo nearby, so the chaos isn’t too much for our son.’ Or, ‘We will meet the whole family at the beach for a few hours at a planned time, but we’ll eat meals and wind down in the evening separately, in our own space.’ Plan for the success (both physically and emotionally) of your immediate family’s time together, not to please the others.

3. Let go of your vacation expectations.

Your vacations won’t likely look like the vacations from your childhood or the ones in the movies. Figure out what works for your family and own it. We realized early on, Lizzie couldn’t handle too many transitions, so we began booking condos where we could walk to the beach and eliminate the two transitions to get in and out of a car. Eating out for our family was stressful. Lizzie didn’t sit well, so we would end up only at places that could accommodate ‘active eating.’ The stress of possible cross-contamination for Noah’s allergies created too much anxiety for everyone. So, we booked a place with a kitchen, ate in as much as possible, and stuck to chain restaurants we knew took allergies seriously. Was I sad I still had to cook on vacation? YES! But did it bring the stress level down, so we all felt more relaxed? 100% YES!

4. Recreate your vacation dreams.

Just because you can’t go certain places with your entire family, doesn’t mean you will never experience them at all. Make a list of all the wonderful things you wanted to do with your family, then recreate those experiences by planning separate trips with your spouse, one of your other kids, or friends. My husband and I save the eating out at nice restaurants just for our trips. I love the energy of busy cities, so I visit those with my girlfriends. We wanted to do Disney with the whole family, but it would have been too overwhelming with all of them. So, I just took my daughter on a special trip where we only did princess things and planned around her natural schedule.

Even though your vacations may not look or go as you planned, the real joy comes from spending time with those you love most and seeing the smiles on your kids’ faces makes it all worthwhile! It may not look the way you thought or hoped it would, but it is still worth the effort to make it happen.

You got this.

Love, Julie

Courtesy of Julie Hornok
Courtesy of Julie Hornok

This story was submitted to Love What Matters by Julie Hornok. You can follow her journey on Facebook and Instagram.  Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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