Excerpt from I Love My Kids But I Don't Always Like Them (Bagdade): Sensory Sensitivities -- When Fun Becomes Painful

Sensory Sensitivities: When Fun Becomes Painful

Disney World is not always the happiest place on Earth. I know this is hard to imagine, but it’s true, and an “unfortunate” experience can happen to the best of us.

The Bagdade family version went something like this:

We quickly rubbed the sleep out of our eyes, poured the kids heaping bowls of Fruit Loops, and boarded a Disney shuttle bus. The kids, still too tired to talk, exchanged excited smiles with us as we wasted no time taking plenty of pictures. It wasn’t until we drove under the Magic Kingdom archway that the bus full of sleepy passengers erupted with excited chatter. We took more pictures by the welcome signs as we disembarked and were herded into line. Besides all the visual fantasy surrounding you, it’s easy to tell you are at Disney World because of the lines, the never-ending lines—for everything.

We waited an hour before the park opened, just like all my meticulously researched blogs and Pinterest pins had told me we would. The kids whined but were easily distracted by the excitement of the day. The anticipation became palpable as I obsessively checked my park app, reminding myself of our itinerary, which I kept sharing with Jeff. I had planned everything ahead of time, taking multiple factors into account, from weather to appetites to shopping, and even room for taking spontaneous photos––all calibrated to meet the expectations of our family. What could possibly go wrong?

Our plan was to run immediately to the back of the park as soon as it opened and do Fantasyland first, before the lines got too long, which they always do, and then work our way back through the rest of the park.

The picture-perfect staff scanned our tickets, opened the queue for us to enter, and off we went––running at first, until we realized we weren’t supposed to do that. Instead, we did what Jeff and I came to call “walking in a family hurry,” which means you move as fast as you can, loaded down with a stroller and two short-legged humans who can’t stop pointing at everything in sight and saying, “Look!” and “Who is that?” and “Where’s Mickey?”

We visited with every princess in Disney history and gasped and cheered just as the commercials show, complete with all the requisite “Oohs” and “Aahs” that accompanied every adorable, perfect pose we could manage before posting them by the hundreds on Facebook.

Next, we got in a surprisingly short line for It’s A Small World. I figured that after our Pirates of the Caribbean debacle the day before, where we forgot that we have a kid who is irrationally afraid of the dark, It’s A Small World would be just what we needed––a welcoming environment of friendly music, laughter and fun––where no one could possibly be unhappy.

As the line snaked inward, Gabi, our little blond bombshell, grabbed my hand when she realized we were heading inside a giant space.

“Mom, will it be dark?”

“No, it’s a happy, cheery ride. You will be fine.”

I said that with a smile stretched across my worried face, as if that would fool her.

“Mom, it looks dark in here now.”

“We are just indoors. Don’t worry, Honey. It’s not dark.”

“Mom, it’s going to be dark!”

Her whole body turned into a ball of panic. I felt as if I could see her heart beating through her big, gorgeous blue eyes.

“Mom, it’s dark. I can’t go. Mom, it’s dark!”

I shot Jeff a look. He shrugged and busied himself with our other little one.

“Honey, it won’t be scary, I promise. Hold my phone, and you can use the flashlight.”

“Mom, she can’t shine a flashlight. That’s weird. No one is scared of this baby ride. This is embarrassing.”

What can you do when an older sister decides to retort like that?

Gabi started to cry, and I quickly distracted her with the iPhone flashlight. Somehow, I managed to get her seated next to me in the small boat that glided up through the water and paused for us. It felt like the Disney gods were there to rescue us with a calm and collected vessel, to usher us through this lazy river to relax and enjoy the ride.

But the Disney gods didn’t know Gabi. At every turn, she jumped, shrieked, and recoiled. I smiled, cooed at the baby, as if everything was okay, and reminded Gabi that she had the flashlight in her hand, just in case.

This whole time, during each turn we made from one exhibit to the next, moving in an out of dimly lit areas, my dreams of the happiest place on earth came crashing down all over me.

I understand anxiety. I’ve worked with kids with extra needs for more than 20 years. I know it’s chemical, and I know that my daughter’s body is wired to constantly fight these urges. In her case, she constantly feels a bear breathing on the back of her neck, even when it’s only animatronic multi-cultural kids swaying to the never-ending sounds of “It’s A Small World,” trying to convince us for five minutes that we all get along, in spite of our better judgment.

All of this ran through my mind as I felt my own bear breathing down the back of my neck, reminding me that all the prep in the world can’t protect you from moments like this. I couldn’t help feeling angry and disappointed.

We can’t even have fun at the happiest place on earth?

How could this happen when I was so well prepared?

What did I do wrong in a former life?

At that moment, stuck in a cave of singing robots with a panicked child, I was anything but happy. This particular instance was only a reminder of all the meticulous planning I had gotten wrong. I wasn’t two steps ahead of my child. Not at all. I hadn’t anticipated her triggers and that she wasn’t yet ready to self-soothe or calm her own fears. I had failed––again, and my older kid looked at me with her head shaking, undoubtedly adding notes to her list of how she will be a better parent when she grows up.

That night, when we returned to the Embassy Suites, we put the kids to bed. As our oldest and youngest babbled on about the excitement of the day, I listened with relief that we were able to push through our challenges and save the experience for them.

As I bent over to kiss Gabi goodnight, she asked if the rides tomorrow would also be dark. I told her I would double check and that she was safe now. I showed her the nightlight next to her bed, kissed her forehead, and tucked her in.

Jeff and I closed the door to the kids’ side of the suite and plopped exhausted onto our bed. We were both drained, disappointed and confused. He looked at me cautiously and I could see him calculating all of his words carefully. That was a good strategy because my patience was at an all-time low, if I even had any left.

“Franki, do you think we should take our kid, who was scared of the dim lights in It’s a Small World, to Hollywood Studios, where everything is Star Wars themed?”

“But she’s obsessed with Star Wars!”

Gabi’s fascination with that epic franchise was one of the things about her that charmed the heck out of me. It made absolutely no sense, as she was scared of the silliest things, but she had an uncanny passion for action and adventure, science fiction and “The Dark Side.” Pretty ironic for a kid who sleeps with 17 lights on. Maybe she found Darth Vader’s voice soothing.

Jeff and I discussed it more and decided to scrap all of our plans for the next day and start over. This was painful for me, as it had taken months of research on Facebook groups, blogs, and websites to get the planning and dining reservations just right.

Our oldest, Ruby, has life-threatening food allergies, so I needed to quickly find safe dining options for her. We decided that Disney’s Animal Kingdom, with its historically smaller crowds and mostly outdoor experiences, would be a better fit, initially because it would definitely not be dark.

In a moment of brilliance (if I say so myself), I poked my head into the kids’ room and saw that Ruby was still awake, so I motioned for her to tiptoe into our room. I told her that she had been such an awesome big sister throughout the day, even though it had been so hard for Gabi (not entirely true, but she was only eight), so we decided to go with her first pick and change tomorrow’s plan to Animal Kingdom. She was thrilled and felt validated and seen. I knew she would have a great attitude for our next outing.

The next morning, I told Gabi the plan and showed her pictures of Animal Kingdom and all the bright, open, well-lit spaces. She agreed that even though she loved Star Wars, maybe she’d wait for those experiences until she was older.

Our two-year-old was excited to see animals. Yea! Thankfully for him (and us), life was still relatively simple, and we all got ready to jump into our new plan, happy for what was coming. We had an amazing day, with short to nonexistent lines, saw great bright and happy shows, and finally got a few good doses of the “happy” experience, which had been promised to us when we first booked our Disney vacation.

I didn’t know how to label it then, but this was the beginning of us understanding as parents how to adapt our expectations, plan ahead correctly, and use the tools I had picked up along the way as an educator. That involves reading thousands upon thousands of educational, psychological, and neuropsychological evaluations as part of my work.

It includes learning buzz words, which are used today in the world of children’s behavior. Sensory difficulties. Sensory sensitivities. Sensory processing disorder.

Sound familiar? None of these concepts are new! Thankfully, we understand far more about the field today then we did in the past. Understanding how your child may be sensitive to sensory stimulation, or a lack thereof, can do wonders for managing their behavior and understanding their limitations. It could also save your perfectly planned Disney trip!

If you want to have a thorough understanding on these disorders, I recommend a book by Carol Stock Kranowitz, called The Out of Sync Child, which explains all of the technical nitty gritty about this area. Don’t worry; you don’t need to be an occupational therapist (OT) or a psychologist to have enough background and understanding to get through to your kids.

I explain these concepts to parents as follows:

We all have senses. Remember the five senses you learn about in elementary school: sight, sound, touch, taste and smell? Let’s expand on that a bit, with two senses, in particular. Taste relates to texture on your tongue and the need to chew. Some kids simply don’t stop chewing their toys or their pens or their clothes.

Sound sensitivities often begin with aversions to loud noise. Kids are also sensitive to certain noises, the sound of a furnace clicking on and off or a timer in the kitchen. Some kids can’t stand “competing” noises, for example, when they are asked to listen to music in a classroom while there is also talking going on.

In fact, that drives me nuts sometimes, too, and I find myself having a hard time carrying on a conversation with a teacher when I’m consulting while there is typical background noise in the room, from students and music! (How do these teachers do it?)

It’s normal for everyone to have sensory preferences. Those with the actual disorder have more of them and they can become intense and anxiety provoking and therefore act as triggers for misbehavior. And it doesn’t matter if you think they make sense or not!

Ever notice that your child can weep, lash out at siblings and even behaves like a wild animal after a loud birthday party? Events like this can often be a sensory related trigger. Thankfully, we have many physical tools to help children who either become easily over- stimulated or who seek more sensory stimulation.

Kids who have Sensory Processing Disorder often vacillate between the two. Here are some of my favorite tools for helping when this happens:

Desire to chew: Chewy necklaces, pencil toppers, or water bottles with chewy tops, such as the Camek Bottles.

Noise sensitivity: Earplugs, either wax, or foam, noise cancelling headphones, such as music ones that don’t play music or ones used by people working on construction sites.

Desire for heavy pressure: Weighted blankets, weighted stuffed animals, lap weights, vests, heavy sweaters. These can have a calming effect on an antsy, unfocused child and help them with sitting still.

Desire for sensory input when needing to be still: Floam, foam, play dough, silly putty, thinking putty, fidgets, Rubik cubes, Squishies, soft pieces of fabric or rough ones, too, like Velcro circles.

Motor breaks in the winter: Air track surrounded by foam squares, swings, and stationary exercise equipment.

Wherever you’re going, plan on bringing a “break bag,” even for older kids, so if they need to pop on headphones and take a break from sensory stimulation., you’re ready. When children are little, avoid certain situations, as they may not be worth it. Sometimes, we have to ask ourselves: Who really wants this Disney trip––you or your kid?

Some kids are avoiders. They won’t finger paint or get messy, and so on. I’ve had teachers let kids use gloves, add a paint brush, or skip some projects!

I wish I had known many of these things during our challenging trip to Disney World, which became a pivotal “aha” moment for Jeff and me as parents. Some might call it a revelation, while others would say it’s a lifesaver that we now know this to be a reality in our lives and we can deal with it and be fine. Either way, facing the truth was essential: We had a child with extra needs.

(More to come on that subject in the next chapter.)

In fact, at one moment or another, each of our kids has required extra special attention. During this phase of our parenting journey, our middle child’s needs tended to outshine the other two, and she required more of our parenting energy on a regular basis. It affected every moment of our being––when we were awake and when we should have been sleeping. Our lives always revolved around her moods. We worried that our other two kids would feel neglected and frustrated, and we constantly felt as if we were failing, and sometimes they did, too.

By the way, apologizing helps, but changing strategies and making improvements is even better!

To exacerbate the mom guilt further, I was a professional educator and an expert in my field as a consultant for special needs children! That meant I got to be the fun “aunt,” flitting from classroom to classroom, offering my advice, helping wipe a nose or two, looking at my watch and thinking, “Oh, my time is up for this month,” when it was time for me to leave. In my position, I saw things with fresh eyes that the teachers couldn’t or wouldn’t notice. I had answers, ideas and solutions for them, but with my own child, all I invariably ended up with was dread, worry and hopelessness.

I needed some expert help!

We had tried a therapist, but Gabi didn’t like her. We tried a second therapist, but Gabi refused to go. We tried a third therapist, and when our schedules didn’t line up, I took Gabi out of school and took time off of work to meet with her. We were desperate for support but taking our child out of school only amped up her anxiety.

Finally, we found a therapist who was the right fit for Gabi, someone who made us feel supported as parents. Even some of our good work was validated. I was able to step out of the haze with two feet on the ground, get Gabi on some life-changing meds, and remember the essence of what I had learned. It was almost time to plan another trip to Disney.

To read more about Franki and her book, click HERE.

To read more MSI Press publications on parenting, click HERE.