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February is Rare Disease Awareness Month. And since it involves the 15th chromosome, February 15th is Angelman Syndrome Awareness Day. In order to help bring awareness to this rare disease, we wanted to share some insight into how we are preparing for life on the deputation trail with a child with Angelman Syndrome.
Our oldest son, Owen, has this rare disease. Owen is unable to speak. He has global developmental delays, and severe seizures. He also has Pica, and will eat anything he can get his hands on.
Owen is also extremely happy. He loves people. And playing in water. His smile lights up the room and draws people in.
He’s taught us so much. And helped us to draw closer to God. Owen truly is a blessing.
Owen’s disability is one of the reasons we never thought about becoming missionaries before the Hemsworths came to our church. In our mind, missionaries served overseas.
We couldn’t leave the United States with Owen because of his medical needs. So, we never really considered this option, though we knew God had called Bryan into the ministry.
Little did we know that God had missions in our future! And a mission field in the country, so we wouldn’t have to lose the access to healthcare.
It’s amazing to see how God cares for all of the details.
But, going on deputation with a severely disabled child brings a unique set of challenges. As we prepare to take our first trip, we wanted to share a few ways that we’ve been preparing for deputation with Owen.
This post also offers some insight into what church with Owen looks like. If we’ll be visiting your church and you’re wondering what to expect, hopefully this will answer most of your questions!
Talking About It
Owen can’t talk. But, that doesn’t mean he doesn’t understand. We act under the assumption that Owen can understand everything we say. He just has trouble communicating back.
So, we include Owen in all of our family discussions about deputation. We share our plans, where we will be staying, and how long we will be gone.
Additionally, we’ve talked just with Owen about deputation. We’ve shared some ideas we have for ensuring he’s comfortable along the way.
We know he’s looking forward to meeting new people. He’s always been social!
When you want to say hi to Owen, you can talk directly to him. He likes to shake hands, though he isn’t always good at letting go right away. Owen doesn’t like it when people talk about him like he’s not there.
Though it comes as a surprise to many people, Owen can walk independently. He started walking when he was seven.
He doesn’t have great balance or stamina, but he’s definitely mobile.
Unfortunately, he doesn’t have great self-control. His desire to rip and chew is strong. So is his desire to hug and love everyone he sees. He’s
not always rarely socially appropriate.
So, when we are out of the house, Owen typically sits in his wheelchair. It’s a comfy space for him to be, and it helps ensure that he stays safe. We don’t want him wandering off or choking on something.
When we travel, his wheelchair has to come along.
Right now, we’re taking two cars. The chair is large, but it fits nicely in the back of our Suburban.
Since Owen is growing, and will be needing a bigger wheelchair soon, we’ve been chatting with the physical therapist about folding chairs that take up less space.
We’ve been praying for a 15-passenger van. That will probably not have space for Owen’s chair with all of the seats in it. So we’ll also need a small enclosed trailer for it. We’re thankful that God has all the details figured out, and are still praying for wisdom in discerning the best options here.
People with Angelman Syndrome often have trouble sleeping. Even though he takes medication to help him, Owen does not sleep through the night. He never has.
As he’s gotten older, his desire to explore has caused some problems at night. Everyone else in the house wanted to be sleeping, and Owen wanted to party.
Thankfully, we found a bed that helps! It’s an inflatable enclosed bed.
Owen can stay safely zipped inside all night. He can play with some safe toys and have his iPad. So when he wakes up, he has something to do.
And his bed is portable! It straps to a twin-sized bed, or a larger one. So we will be bringing Owen’s bed with us along the way.
Well, sort of. We picked up a second bed to use for travel. That way we don’t have to set up and take down his bed here at the house. The new one is blue, and the mesh is more see through.
Owen’s bed is his safe place. We leave it unzipped during the day, and he often crawls inside it and just sits for a while. When he’s ready, he joins the rest of the family again.
We think that having the bed along the way will help ground Owen, and give him the familiarity of home.
Owen, like many children with Angelman Syndrome, has some sensory problems. He gets overwhelmed very easily.
He really loves new people, but meeting a lot of them at once is a bit hard for him.
When we come to your church, you may notice Owen covering his ears. He’s not trying to be rude. It’s just one of the ways he’s learned to cope when there’s a lot going on.
We try to incorporate some sensory elements into Owen’s day, and we’ll be continuing to do so on the road. This helps him get through the overwhelming parts of the day more easily.
He loves playing and chewing on things with different textures, so his car bag will be filled with things he can use.
His iPad helps him focus, so he’ll also be using that. Even though he has poor fine motor skills, he’s able to manipulate many games on the iPad. It’s really been a blessing for him!
Owen really likes music! Singing time at church has always been his favorite part, ever since he was a tiny boy.
He’s usually quiet in church, but sometimes he likes to try singing along. When he does, you may hear some strange sounds. It’s just his way of making a joyful noise!
Owen has epilepsy. His seizures are not fully controlled, even though he’s on several medications.
We continue working with his neurologist, and are hoping to find a better combination. But, as he enters puberty, his hormonal changes make it harder to do so.
Owen mainly has drop seizures. In his wheelchair, his head will just drop down for a brief moment. Most people won’t even realize he’s had a seizure.
Owen also has seizures that manifest in his hands shaking. It’s like a tremor, but it completely goes away when his seizures are under control.
Occasionally, Owen has had grand mal seizures. Those are the full body shakes that most people associate with epilepsy. But, Owen typically only has those when he is extremely ill
If Owen has a seizure while we are in church, it’s important to stay calm. We will ensure that Owen is safe and comfortable. You do not need to call 911, as it’s not an emergency.
When he comes out of his seizure, he will be very tired. He will likely spend most of the day sleeping it off. We like to compare it to a computer needing to reboot after a power surge. Owen’s brain needs some time to get back to normal after the seizure.
Though Owen has a g-tube in place, he hasn’t used it for years. We are so thankful that he outgrew his swallowing difficulties!
But, even though he now eats by mouth, Owen doesn’t have the fine motor skills to use utensils properly. He’s a very messy eater.
At home we let him feed himself whenever possible. It’s good practice and an important life skill.
But, we know this won’t work so well on the deputation trail. Especially when we are in churches or someone else’s home.
This means you’ll see Lisa feeding Owen. We have a system worked out and try to keep things as neat as possible. We do appreciate lots of napkins though!
Owen is not currently on any special diets. We’ve trialed both the Ketogenic Diet and the Modified Atkins Diet for his seizures before. While they offered great suppression of seizures, they also brought a host of other problems, like Pica. So, he’s no long on them.
Owen loves food, particularly soft foods like jello and pudding. He loves practically everything, though he sometimes has trouble chewing meat. And long noodles and thin soup are hard for him to eat. It’s rather difficult to feed someone else those two foods…
Owen can drink independently from a particular style of sippy cup. Many of them he can’t use because he bites through them.
We’ll be bringing along the ones he can use. With all of the medication that Owen is on, it’s important for him to stay hydrated.
If a cup is close to Owen, he will try to grab it and drink. Except he usually only gets a little bit in his mouth. The rest goes on him and anyone standing nearby.
Since Owen tries to grab things, we like to sit at the end of a table. Then we can park Owen’s chair slightly away, so he can’t reach everything.
Staying in his wheelchair for hours on end isn’t good for Owen. He really needs to get his blood flowing.
This means we plan movement into his days. If we’re driving, we find a park where he can crawl on the equipment and walk for a bit.
If we’re in a church all day, we will help Owen out of his chair and walk with him for a few minutes at a time when there’s a bit of free time. This just helps to keep him more comfortable.
We don’t know exactly what to expect on the deputation trail with Owen. He enjoys car rides, so we’re praying that he’ll adjust well to this new adventure.
While we aren’t sure what to expect, we do know that we can trust God. Owen having Angelman Syndrome was not a surprise to God. Owen isn’t a mistake.
And since God called us to Missionary Acres, He will help us to get there – all of us!