In just a few days, I’m doing something I’ve never done before. I’m getting on an airplane with my husband and heading to Missionary Candidate Seminar. That means I’m leaving the kids behind for two weeks, including my child with Angelman Syndrome.
And while grandparents have watched him for a day or two before after I’ve had babies, I’ve always been nearby. I’ve never traveled so far away from my kids.
I know they’ll be in good hands here, but I am still really nervous about leaving. The child I’m most worried about is Owen, my Angel.
He has medical needs. He eats things he shouldn’t. And he occasionally has poop parties. Those are gross enough for me to clean up afterwards, but I hate thinking about someone else having to deal with it.
Because of Owen’s special needs, I had to put some special thought into leaving him behind for a couple of weeks. I created a to-do list specifically to help ensure the people watching him would be set up for success.
Here are seven of the things I did (or will do) to prepare to leave my child with Angelman Syndrome in the care of someone else.
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1. Prep Medications
Even though we’ve been weaning Owen off some of his seizure meds, he still takes many medications each day.
In the past, I’ve loaded up the meds he needs in snack sized Ziploc bags and labeled them with the day and AM/PM. But, that was going to take a lot of bags and I was worried my marks would come off.
They have an AM and a PM section, which was really important to me since Owen needs meds morning and night. They also make some with three spots if your child needs them at noon too. The large slots were important since Owen is on so many meds. Some of the smaller containers don’t hold what I need them to.
On a side note, make sure to refill your child’s prescriptions before heading out of town. That way you know there are plenty on hand. I have almost all of Owen’s medications mailed directly to the house from the pharmacy, but one of them I have to actually pick up. (It’s his most expensive seizure med at over $2000/month, so I’m wondering if that’s part of why they won’t mail it???)
I made sure to request a refill this week, and I’m so thankful Owen’s doctor was quick to sign the refill order and get it back to the pharmacy. Now his meds are ready for me to pickup before we leave!
The Med Plan
Owen takes his meds on applesauce. It’s how I teach all my kids to swallow pills. This means I also needed to stock up on applesauce and ensure my teen (and the grandparents who are in charge) know how to give Owen meds.
Then it’s a matter of scooping out the right pills for the day and time of day, and giving them to Owen one at a time.
Make an “Emergency Med” List
Two of Owen’s meds he doesn’t get every day. He has a rescue seizure medication, and an EpiPen for bee stings.
These don’t need to be prepped like the others, but I need to make sure to list their purpose, how to use them, and location so everyone knows.
2. Figure Out Sleep
For most of Owen’s life, I’d be most worried about night time. He doesn’t sleep well, and used to wander through the house. A Dutch door stopped him for a while, but it didn’t take long for him to learn how to reach over the top and unlock it.
He’s even left the house before in the middle of the night, since he learned how to unlock doors. So scary, and I’m so thankful he wasn’t quiet in his sneaking out. I heard the door slam against the counter and it woke me up.
Anyways, night times used to be a struggle.
But, ever since we purchased his inflatable enclosed bed from Safe Place Bedding, it’s been a life changer. I’m now confident enough to leave him, because I know he’ll be safe at night and everyone caring for him will be able to get some sleep.
Other tactics we use for sleep management:
- A stronger, prescribed sleep med
- Background noise – typically it’s Owen’s iPad with movies playing
- Warm sleepwear – Owen won’t stay under covers and even in the summer our house usually cools off to 60, which feels cold!
3. Keep Meals Simple
Owen can be difficult to manage for someone who isn’t used to it. He’s strong, and needs assistance in every area of life. It can be tiring, so the last thing I wanted to do was also ask his caregivers to prep complicated meals.
Thankfully Owen is no longer on any special diets, and eats most things well if someone feeds him. So the meal plan I picked for the next two weeks is my “super simple” form of our annual meal plan. All the themes stay the same, but the meals I selected are the easiest I can think of.
The kids all love them and are used to them, and the people caring for them won’t have to take a ton of time or energy trying to deal with meals.
Some foods are REALLY hard to feed someone else. Soup is one of those foods. No matter how hard I try, I can’t feed Owen soup without getting him (and usually me too) wet from the broth, with stray noodles all over.
So guess what’s missing from this meal plan? That’s right – soup.
Think through what your child will eat, and enjoys eating. Then make sure you have everything on hand for those meals.
It’s also important to think through snacks. Apples and cheese sticks are some of the foods Owen can successfully self-feed, so I’m going to have those on hand.
One final point about meals. Make sure your child with Angelman Syndrome has a self-sufficient way to get something to drink. After trying lots of things, we discovered Owen does best with these Good2Grow things:
We wash them and reuse them until his biting destroys the top so completely that it leaks. Then we toss it.
Owen will find these on the floor and pick them up to give us when he’s thirsty. It’s one of the ways he communicates, and it’s been amazing to see.
The other kids also love these – the fun characters are neat to look at. So my younger kids use them instead of sippy cups. That way we just have one style we have to deal with.
4. Potty Supplies
When someone else is caring for your child with Angelman Syndrome, make sure you have a good supply of everything they’ll need for toileting.
While I’m pretty good at reading Owen’s signals, someone who hasn’t been around him for a long time won’t be. That means he’ll likely be going more in his diaper and less in the potty.
And that’s okay – I have to hold him on the potty to help support him, and try to time it all right. I don’t expect anyone else to do that.
So I’m making sure there’s a good supply of Owen’s diapers and wipes. I’m also leaving a pack of Nitrile Gloves under the bathroom sink for caregivers to wear. Changing baby poop is one thing. Changing 12-year-old poop from a child with Pica who has who knows what in the diaper is entirely different.
5. Activities List
Not everything all the kids do is safe or appropriate for Owen. But, there are activities he enjoys.
To help the Grandparents know what to do with Owen, I’m leaving a list of activities. Here are some of the items on it:
- Playing in the yard
- Swinging in his therapy swing
- Playing with MegaBloks
- Chewing on stuffed animals (ones with no eyes or noses that can pop off!)
- Chewing on his chewy tubes
- Watching a movie and snuggling on the couch with someone
- Listening to audio books (no pages he can rip!!!)
- Going on a walk in his wheelchair to the creek
- Using his iPad
Having some ideas of what Owen can do are important. This way if the other kids are doing something he can’t participate in, there’s a plan for Owen to help keep him safe.
6. Medical Release & Insurance Cards
This one is super important! When I took Owen to his doctor a few weeks ago, I asked what I needed to do to ensure the Grandparents could take Owen to the doctor or ER if necessary.
He told me to type up and sign a release form granting them (by name) permission to seek medical care for all of my children. He recommended putting a date range on there too, and including a date of birth next to each child’s name.
And he reminded me to leave insurance cards for all the kids.
You never know when an accident will happen, so it’s important that medical care can be sought when needed.
And I’m so thankful that Bryan’s Mom is an E.M.T. I know Owen will be in good hands if he has a seizure and bangs his head or anything!
7. Make a List of Signs & Symptoms to Watch For
Finally, children with Angelman Syndrome don’t communicate in a typical fashion. They can’t tell their caregiver where they hurt or what’s going on.
So it’s essential that you take time to write down some key things to watch for.
For Owen, that includes things like this:
- Funny sounds while breathing (often a sign something is stuck in his throat)
- A strange smell from a nostril (a sign something is stuck in his nose
- Chewing on something when he hasn’t had food (a sign he’s found something non-edible)
- Small grunts and groans (a sign he’s hurting somewhere)
- Not bearing weight on one foot (a sign of a potential break)
- Sudden falls (a seizure sign)
- Not eating for two meals in a row (a sign that he’s sick or has something stuck in his throat)
All kids have their own special things to watch for, their way of communicating with the world without using any words. Make sure the people caring for your child with Angelman Syndrome have a basic understanding of what those are.
Lots of Love
Remember to get lots of snuggles with all your children before you leave, especially your child with Angelman Syndrome. Since they don’t have the words to express love, they do it best through snuggles and contact.
And enjoy your time away – it will be refreshing and give you the energy you need to resume care taking when you get home.
Also, if I find out I forgot something important, I’ll be sure to update this post! I’ve never done this before. 😀