When your family has a child with Angelman Syndrome, like our Owen, traveling can be challenging. Owen thrives in routine, and while he enjoys seeing new things, he’s often overwhelmed with stimulation on the road.
This leads to an increased seizure threshold, and behaviors. No fun anytime, but especially when you’re on the road and away from home.
Since we’ve been called to become missionaries at Missionary Acres, traveling with Owen has been on our minds a lot. You see, Baptist missionaries travel frequently while on deputation. And traveling with Owen has always proved difficult.
But while we are on hold on the process of actually hitting the road on deputation until we pay off more of our debt, the Lord has been answering our prayers and concerns when it comes to traveling as a large family with a special needs child.
This summer we’ve already had a successful two-day trip with Owen, and we’ve learned a lot. We’re learning more and more about how the Lord works everything out in his perfect timing.
Here’s how we handle traveling with a child with Angelman Syndrome.
1. Own Space in the Vehicle
Sometimes we take the bus on road trips. Other times we take two cars. Either way, we ensure Owen has plenty of space. He gets his own seat in the bus, and in the Suburban he gets an entire bench.
If someone else is sitting next to Owen, he loves to snuggle up close. He checks out everything they have, are wearing, and are looking at. Most of those objects go into his mouth.
Owen often pulls hair, or pinches. When he sits next to someone, we usually have tears.
In order to encourage sibling harmony, we’ve learned it best to give Owen his own space. That way everyone is ready to play when we arrive instead of being mad at Owen.
This means I can take two fewer kids in the Suburban, but it has made our trips much more peaceful. That is worth it to us!
Let’s talk car seats for a minute since we’re on the topic of vehicle travel. A standard seat belt just does not contain Owen. He slides down and winds up choking himself on the lap belt, with his feet flailing in the air.
We’ve pulled over many a times to rescue him.
Ideally, we’d have a special needs car seat with a harness. But, the insurance didn’t see the medical necessity of that. So they denied it. Now, we use a five-point harness that slips over the seat. It’s designed for a school bus, so we still use the car seat belt with it. While harnessed, Owen can’t slide so the seat belt actually works.
On the bus, we just use the harness.
2. Bring a Portable Bed
Owen doesn’t sleep well. Even with sleep meds, he wakes frequently. This is especially true when we’re in a new space and he’d rather explore.
Hotel stays stopped being enjoyable for me several years ago. I’d wind up sleeping in a bed with Owen, with my arms and legs literally restraining him to keep him in bed. I’m sure you can imagine how restful I felt each morning.
But, this year was different. Another Angel mom reached out to me on Facebook, after reading my post about raising a child with Angelman Syndrome, where I lamented the fact that we still hadn’t had an enclosed bed approved.
She mentioned that she and her husband had designed an inflatable bed for their child with Angelman Syndrome. I looked at the page, and my first thought was, “Owen would destroy that the first night!”
But, the Lord kept bringing it to my mind. So Bryan and I decided to buy one. It was $500, a lot of money for us, but definitely more doable than the several thousand dollar price tag on other enclosed beds. Thankfully was a good month with my business, and we had the money to purchase it right away.
It arrived in a nice bag, just a couple of days before we left for our Tri-Cities trip. I stuck it in the back of the car, wondering if it would work.
When we got to the hotel, I put Bryan to work setting it up. It only took a couple of minutes, and when it was blown up (with the included pump) it looked like this:
It seemed sturdy, but I still thought Owen would pop it. He surprised me! At night after his meds, he climbed up in it and held onto his iPad. We zipped him up and locked the zippers.
Owen slept almost all night. Or at least he stayed quiet enough that I didn’t hear him until 4 AM. I can’t remember the last time he slept that long!
When he started making some noise, I opened up the bed and crawled in with him. There was plenty of room for both of us to be comfortable. He fell back asleep easily, and slept another couple of hours.
It was the same the second night. He seemed to enjoy being in the bed, and even climbed up there on his own during the day and just sat for a while.
I never dreamed we’d find such a helpful solution, but it was a definite answer to prayers! We’re going to try it in a tent in the yard one of these days, because it may be possible for us to camp now. We’ve always worried about Owen crawling off before.
If you’re traveling with a child who needs an enclosed space, definitely check out Safe Place Bedding
Note: This is not a sponsored post. We purchased the bed and just love it enough we wanted to share!
3. Pack Some Food
Owen has some textural issues when it comes to food. There are things he just doesn’t eat well. For instance, noodles are really hard for him to eat.
I always make sure we bring along some high calorie foods that I know he’ll eat, and a small cooler for them. When selecting them, I look for foods that are also easy to use for swallowing pills.
Some favorites include:
- Applesauce cups
- Single serve puddings
- Meal replacement bars
These will help tide Owen over if we’re ever in a situation where he can’t eat anything else. They also give us something to feed him his meds with in the morning and night.
4. Bring Medication
Speaking of meds, make sure you bring along your child’s medication. Here’s how I handle packing pills.
I use small sandwich bags, and label them AM and PM. In an AM bag goes each of the pills Owen needs in the morning. I do the same for night. When packing, I bring along enough for all the days of our trip plus two extra days, just in case.
Owen also has meds that he doesn’t need all the time. I bring them along, in a small lunchbox style bag. This includes:
- His emergency seizure medication
- His Epi-Pen back up (besides the one I keep in my purse)
- Constipation medication
I want to have everything we could possibly need so I don’t have to deal with working with a pharmacy out of our home area. Since I’m packing medication, I also throw in some basic over the counter stuff in case anyone gets hurt or something. Just some Tylenol and Ibuprofen.
Our kids learn from an early age not to touch medication, so I’m not too concerned about having a bag of medication. I just keep it up where the youngest ones can’t reach it. If you would feel more secure, you can also pack it in a small lock box.
Bring Your Own Entertainment
Owen likes to watch Wreck It Ralph or Toy Story before bed. Those are his movies currently, and his routine. Guess what movies we’ve never caught on a hotel TV?
To keep Owen more in his routine, his iPad always comes along. We bring it when we go to our friend’s house, or to Grandma’s. It calms Owen, and is something we know he enjoys.
This is the case we use (we’ve found it to be pretty Owen proof!)
We put movies on the iPad, and his favorite apps (Toca Boca!). It’s also essential that we remember to bring a cord for charging. Since Owen has an older iPad, it requires a different cord than we use for our phones.
He has a couple of stuffed animals that he enjoys chewing on, so we always make sure we bring one along.
Basically, we bring stuff that is safe for Owen to chew on and that will help him be comfortable and engaged regardless of where we are.
Are you traveling with a child with Angelman Syndrome?
I love to hear your best travel tips!