On the road with special needs kids

Next week will mark the four-year anniversary of the start of our son’s battle with epilepsy. I’m thrilled to report that today he remains in seizure-remission and his doctors are so pleased with his progress we no longer need to make neurology visits. When I recall the emotional turmoil of those many months, though, not a day goes by that I don’t breathe a prayer of thanks for our “normal” todays. For those of you who may be walking in the thick of your own family crisis, I wish I could give you a hug. I remember the heartbreak, the anguish, and the fear–and I know it is oh, so hard. But even in the midst of the hard and the broken moments, there is hope. And with hope comes the courage to pursue a new normal. This is our story, originally published a year ago:

February 20, 2013, started off just like any other Wednesday. We did our school lessons, played, ate lunch, and then I took our littlest upstairs for his nap. As I sat next to his toddler bed, soothing him to sleep, I felt him suddenly stiffen and begin jerking: a seizure. He was only 2, with decorations from his recent birthday party still hanging in the house.

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Our lives were turned topsy-turvy in a matter of seconds. A frantic call to 911. An ambulance ride. A battery of medical tests. We were ultimately sent home to watch and wait for a follow-up with a pediatric neurologist. In some ways I held my breath over the following weeks, hopeful the seizure event had been merely an isolated one like so many of the ER staff had tried to reassure me. I had finally begun to exhale as we prepared to head South to visit family–it was March 22, and a month had past. Life was returning to normal. It felt like we were in the clear. And then, before we had even made it out of the state of Pennsylvania, I turned back in my passenger seat on a whim and discovered my little boy writhing in his car seat: another full-blown grand mal seizure.

We diverted to Children’s Hospital and began a long journey of hospital stays, EEGs, seizure medications, and more extensive medical tests. Winter faded and spring arrived while we watched from our son’s hospital window–and yet our crisis continued.

It wouldn’t be until August that we providentially discovered the key to seizure-freedom for our son. But in the months between we were desperate for anything to bring his rapidly accelerating seizures under control. At the worst, our son was having dozens and dozens and dozens of seizures a day–and as many as four different types of seizures, some of which would cause him to drop to the ground unexpectedly. He had to wear a helmet and one of us practically stood by him every minute of the day. By night he slept in bed between us so we could count and monitor the nightly grand mals. In addition to his cocktail of medications, we began the intensive ketogenic diet that has proved to be very effective for treating uncontrollable seizures in many epileptic children.

As summer began, we looked at our calendar and wondered, should we still go camping? We had two trips planned that the whole family had been looking forward to. But was it just too much I wondered? How would we manage our son’s diet* from our tiny, ill-equipped RV kitchen? What if his seizures intensified while we were miles from his doctors and the hospital? Would the camping trip really be any fun or relaxing in the midst of everything?

*The keto diet involves a fine balance between fats and carbs. Our son’s meals were heavy on fat and protein, and had very small amounts of carbs–and absolutely no sugar. Everything was measured to the gram on a scale, and every trace of food had to be scraped and consumed. Pictured below is one of his typical meals: an egg white “pizza” with strawberries and butter.

Ultimately Jarrett insisted we still go on first one and then the second trip as well. Although I still had my reservations, we set about making preparations. Traveling and camping with a child with special needs requires special considerations. It required a lot of extra work beforehand, but we discovered it was worth that extra effort to still embrace camping and touring with our family. We did several things to simplify the trip and help us feel more confident about traveling with a special needs child:

• • I created a detailed packing list of all the things we needed to use in the care and management of his epilepsy. This also included anything that would be needed in an emergency situation.
  • If needed, I renewed prescriptions a week before the trip. Rather than counting out the exact number of pills we would need, we took the entire bottles. I created an “emergency vial” with a day’s worth of medications that we always kept in the car during the trip, along with a squeeze applesauce and a spoon for dispensing the pills. If for some reason we didn’t get back to the camper, or if his emergency bag containing the day’s medications were lost, there would be back up medication in the van.
  • We notified our doctors before our trip that we would be traveling and we had a master folder containing contact information for all of the doctors plus detailed information about the medications and doses he was taking. We included contact information for our pharmacy, too.
  • We ordered a medical alert bracelet and made sure he wore it daily.
  • We prepped as many of his keto meals as we could before we left home. Since all the tedious weighing and measuring was done at home, it made mealtime much more relaxed during the trip–and made it seem like more of a vacation! To make this prep process easier, we purchased several sets of custard dishes (with lids) that could be frozen, microwaved, or put in the oven.
  • We kept things extremely low key for the first trip to Black Moshannon State Park. By the time of our second trip to Kooser State Park we were feeling more confident and our son was more stable, so we did more touring.
  • We created an emergency plan that included emergency phone numbers, the location of the nearest hospital and pharmacy, and directions for the best travel route to the hospital.

As it turns out, we never needed that emergency plan for either trip. Things went smoothly, and we have a lot of wonderful memories as a result. Although our lives were still far from “normal,” doing “normal” things as a family was a huge part of walking the road to emotional healing during those months. It was all still very hard, but it got easier as we all adjusted and came to terms with a new normal.

But since every family’s story is different, and since different special needs require different kinds of planning, I thought it would be good to have more than one perspective about traveling with a special needs child, and I knew just the person to offer encouragement. Missy (from Discovering US Bus) and her family love to camp, to visit family, and even traveled full-time for two years in a converted school bus. But they have had to overcome significant challenges to make travel possible for their family, which includes a child with Type 1 diabetes, a child with autism, a child with seizures and GI issues, and a child who needs to eat a gluten-free diet.

Missy shared that although thinking about traveling with one or more special needs children can be overwhelming, it does not have to be if you prepare ahead of time. She offers these additional tips for traveling with a special needs child:

• Start small. Do not make your first camping or traveling experience a week long and 500 miles from home. Take a few practice trips within an hour or two from your house just for a few nights.
• Know the nearest children’s hospital that can meet the needs of your child.
• Have copies of insurance cards and all of your doctor information in a folder. I include the last doctor’s notes and any relevant medical records. Keep this in your vehicle.
• If you are staying in a hotel, make sure they have outlets where you need them for any medical equipment. Or just to be on the safe side, bring a drop cord.
• You know your child! Prepare for the car ride with activities to keep them occupied and stop when they need to stop. Planning a midway point to get out and do something fun gets them out of the car and takes their mind off “how much longer till…”

Missy says there is one tip that has helped her over and over again: “Lower your expectations. This is a trip to build memories, bond, and have fun. Nothing more–nothing less!”

This has been a long post–if you’ve made it this far, thanks for reading! We are so thankful that our son is currently in seizure remission, which of course has made traveling and camping so much easier. However, we know that if the seizures do re-emerge (which, with our son’s condition is a very real possibility), we will do everything we can to continue making these memories as a family–camping, traveling, and touring. For those of you with your own special needs child, we hope this post has encouraged you that you are not alone, and if you have any questions about special needs travel, please drop us an email.

Do you have any tips for traveling with a special needs child? If so, please leave a comment below.