anxiety,  autism,  travel

The injury

July 4, 2016 Sarah iphone 135
The beach at Destin, Florida

We’ve been home a week now and we’re still dealing with the aftermath of our vacation, trying to get back into routine, unpack suitcases, keep ahead of the laundry race, and getting the kids back into summer running and routine again.

Our first day back I wasn’t sure how that was going to go with J.

Because Friday, the morning of our last day in Florida, and six hours or so before our flight to Wichita (to finish up the trip with a quick two day visit with my sister whom I miss dearly since she now lives in Saudi Arabia) J stumbles out of the bathroom and says.

“I cut my toe!”

At first glance it looked fine, until I saw the blood seeping around the edges of the nail. I knew he had damaged the nail, but I wasn’t sure how much. I was hoping it wasn’t much, because J was edgy—really edgy to get down to the ocean and swim one last time before we headed for the airport.

Thirty minutes later, J comes hobbling back from the beach with Steve, crying and sobbing. “It’s his toe,” Steve explained, leading J to the bathroom to take a shower. “The nail’s pretty bad.”

Sure enough, J’s big toenail is popped open at a 45 degree angle. I can see completely under the entire nail. Little grains of sand. Surprisingly not a lot of blood. I try not to freak out (ripped off nails make me queasy–even W got queasy looking at it) because J is on the urge of freaking out.

Steve heads out to the closest Walmart for some Neosporin and bandages while I try to keep J calm and sitting down. I wonder if we need to take him into urgent care. I really don’t want to go to urgent care. Not just because we’re flying out in a few hours, but taking a child with autism to a doctor for any circumstance is often one of the most stressful experiences I’ve ever gone through. I rather rip my own toenail off than take J to the doctor right now.

I wonder if we should take the nail off. I wonder if we leave it on. Through it all I keep telling J to take deep breaths until Steve comes back, and surprisingly he handles it well. After we treat and bandage the toe, I give J some Tylenol (for the pain) and he hobbles around complaining about his toe occasionally but we make it to our flight without too much trouble. We tell the airport security that J has autism and a toenail injury and ask if they would make an exception for shoe removal. Thankfully they do, and we make it to Wichita without catastrophe.

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Before J, I never even considered what it would be like to bring someone with a disability, someone with emotional struggles and high anxiety to the doctor to receive medical care.

Except once we get to Wichita J’s toe looks worse. It’s red, and pussy and I know it’s infected. Sunday morning, as we try to change J’s Band-Aid and apply Neosporin, J is in tears, trying not to have a meltdown because “he’s an eighth grader now” and he really trying not to have meltdowns anymore (or so he tells me).

After we get J’s new Band-Aid on, Steve and I talk and decide we need to take J in to urgent care. I have a meltdown. Like I said, I rather rip my own toenail off than take J to the doctor. A doctor in Wichita, with someone who doesn’t know him at all, in a place he’s never been. His nail is just hanging by the nailbed and I’m thoroughly convinced that the dr will have to remove it in the office. Which I know J won’t handle. He would definitely have an anxiety attack and meltdown over that. I start crying because J is thirteen and 108 pounds and 5’ 4 ½” and it would take me, Steve, and a nurse, and possibly other adults to hold him down. He would definitely have to be sedated. Does that mean that we would have to take him to the ER instead?

My mom drives Steve, J, and I to the nearest urgent care. Normally, with anyone else in the family, I would be stressed out about insurance, out-of-network expenses, how many letters I’d have to write to the insurance company to make sure that they covered our medical care outside of Fargo, but all I can think about is the physical battle that we might have to engage in at the dr’s office and the embarrassment and frustration that comes with trying to get an autistic child medical care.

We wait in the waiting room, and J is still calm. He’s psyched himself up that he’s going to do well, that he’s going to handle it. He keeps telling me that he’ll take deep breaths with the doctor looks at his toe. He colors some mandalas as we wait. As Steve gives the paper work to the receptionist, a man comes up to Steve and asks him, “Hey, I was just wondering if you knew anything about autism?”

“Yes,” Steve said, surprised. “My son has autism.”

“That’s what I thought,” the man said a little embarrassed. “I hope you’re not offended that I came up to and asked you about it. I just have a daughter with autism too.”

And then I felt 100x better. Because if no one else in that entire building could sympathize with an “overdramatic” “hypochondriac” child that couldn’t handle a little toenail injury, there would be one other person (besides my mom) in the building who could sympathize with us.

As we head back to the examination room, we explain to the nurses that J had autism (and I really hope she understands what that means). The dr came in right away to examine the toe—which was definitely infected. She applied some prescription strength Neosporin type ointment on his toe (while J forced out some really deep breaths) and gave us a prescription for the ointment plus an oral antibiotic. She assured us they wouldn’t need to remove the nail since it would fall off on its own. J got a little panicked upon hearing that he would lose his toenail but the dr was really sweet about explaining that it’s his body’s job to fix itself and that how it works. This on-call dr was probably the most compassionate dr’s we’ve had when it comes to bedside manner and autism. We left urgent care without a battle at all.

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Picture of “just the grand kids” at the Beck reunion. It melts my heart to see my teenage boy hold a baby!

I feel like we dodged a major bullet with J’s toe. We lucked out that the nail didn’t have to be removed. We’re lucky that J can handle new places and new doctors without a second thought. We’re lucky that he’s starting to apply his calming strategies in real time—that the strategies no longer exist just on paper in a social story.

Being the parent of an autistic child, you always know that things can go south out of nowhere. I’ll be honest. It’s really exhausting being on edge all the time—anticipating the next catastrophe. But every once in a while, we avoid catastrophe, and I’m really grateful for that.  I’m also grateful that there are more and more people who have seen autism before and that they can be supportive in situations that are stressful and overwhelming.

There are still good people in this world. I think it’s easy to forget that, especially when you feel like yours is on the brink of falling apart 😉

Oh, and J’s back into his running routine again with no toenail complications! Sometimes it’s easy to forget that he’s trying his best to be his best too.

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  • Carol Forster

    A happy ending to a stressful situation. I think you need to give yourselves credit for the ways in which you have taught him the calming strategies. You both have so much patience and his reactions are a testament to your commitment, consistency, and love. And you are right, that picture with all of the children and with J holding the baby, precious and heartwarming.