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, we’ve gotten a lot more practice traveling with Owen. We’re currently on deputation, so travel has become a normal part of our family routines. We’ve definitely learned a lot on our last several trips, and we wanted to share these tips with you to help make traveling with a child with Angelman Syndrome easier.
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1. Dedicated Space in the Vehicle
It’s important that your child with Angelman Syndrome have a dedicated space in your vehicle. Children with AS often thrive with routines, and knowing what to expect, and this is one small way you can help provide that on the road. When we were driving two cars on trips, Owen got the entire back bench of the Suburban. Now that we were blessed with a 15-passenger van, he gets the seat closest to the door in the first row.
This seat is easy for us to use to help him in. It also gives him plenty of window space to look out of. It’s also close enough to my seat that I can turn around and hold his hand or pat his leg if he is starting to feel distressed.
Having a dedicated space also helps you space people out a little better. 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.
Owen doesn’t sit appropriately in the car with just a standard seat belt. He will slide down, until he’s choking himself on the lap belt. This is dangerous, for obvious reasons.
Before we got a special harness, we had to pull over many times to rescue him and get him re-situated.
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. Twice.
So, we now use a less-expensive solution. It’s a five-point harness that slips over the seat and secures. It’s designed for a school bus, so we still use the car seat belt with it to ensure safety. While harnessed, Owen can’t slide so the seat belt actually works. It has made traveling much safer.
If your child with Angelman Syndrome struggles to stay seated as well, you might consider a special needs car seat or harness.
2. Bring a Portable Bed
Owen doesn’t sleep well. He never has. And even though he’s now on two different medications to help, he still wakes frequently in the night.
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, a few years ago, 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 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.
This first green bed lasted for about a year. Then, the company replaced it under warranty after it started deflating. We have since purchased two additional beds, one blue and one gray. The newer models have a more see-through mesh, which was really an upgrade.
We intentionally cut apart one bed, and used the pieces of to turn into an enclosed bunk in our travel trailer:
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 beds ourselves and just love them enough we wanted to share!
3. Bring Favorite Foods
Owen isn’t always a great eater. He 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 with ice packs. When selecting what to bring, I look for foods that are also easy to use for swallowing pills.
Some favorites include:
- Applesauce cups
- Single serve puddings
- Meal replacement bars
We also bring along Pediasure, since his nutritionist wants to see him gain some weight. These help get some extra calories into him.
The food we bring along helps tide Owen over if we’re ever in a situation where he won’t eat anything else. They also give us something to feed him his meds with in the morning and night.
4. Remember to Bring All Medication
Speaking of meds, make sure you bring along your child’s medication. To keep this easy, I use a 28 space pill sorter. This is meant for a month, but instead I do AM and PM for two weeks. This ensures I have enough for almost all of our trips. I also have a second one, which means I can bring enough meds for nearly a month.
His liquid medication isn’t practical to pre-portion like pills, so I just bring the bottle and a couple of medicine syringes for dosing.
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 are included. I also throw in some herbal salve for small injuries. These can be used on any one.
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.
5. 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 found 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 iPad 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.
In addition to the iPad, we bring along some chewies for Owen. These are calming for him as well.
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.
Then he will always have something to help him from feeling bored in the car.
Are you traveling with a child with Angelman Syndrome?
What tips do you have to add to my list? I’d love for you to share them in the comments.
Also, I’ll be doing an additional post later on travel trailer travels with a child with Angelman Syndrome. I just want to get a bit more experience first!
This post was originally published in 2017. It’s been updated with up to date information.