My 13-year-old son Owen has Angelman Syndrome. And since today is Angelman Syndrome Awareness Day, I wanted to share my top fifteen products that have been helpful in our AS journey.
Most of these aren’t big, medical equipment type items. You will find a handful of those items sprinkled in, but mostly you will find the smaller items. The things that just work really well for my son or make parenting him easier.
Disclosure: I’m not a medical professional or anything. I’m just a mom sharing what products she loves for her son with Angelman Syndrome. If you’re parenting a child with Angelman Syndrome, your list will probably look different. Our kids are all unique, and that’s a good thing. Long story short? You may not experience the same results as we did.
If you’re interested in reading my past posts on Angelman Syndrome Awareness Day, check them out below:
- 15 Ways Angelman Syndrome Changed Our Lives
- 15 Challenges of Raising a Child Witt Angelman Syndrome
- 15 Blessings of Raising a Child with Angelman Syndrome
- 15 Ways Angelman Syndrome Changed My Parenting
Before I dive into the products, here is a little more information about Angelman Syndrome, to help raise awareness.
What Is Angelman Syndrome?
According to the Angelman Syndrome Foundation, Angelman Syndrome is:
Angelman syndrome (AS) is a rare neuro-genetic disorder that occurs in one in 15,000 live births or 500,000 people worldwide. It is caused by a loss of function of the UBE3A gene in the 15th chromosome derived from the mother.
How Does Angelman Syndrome Manifest?
People with Angelman Syndrome have many defining traits. Here are some that Owen has:
- Global development delays
- Uneven gait
- Sleep disorder
- A love of water
Owen also has Pica,and will eat anything that can fit in his mouth. The other kids are really learning to pick up after themselves, because if they don’t, their brother will literally eat their things.
Life with Angelman Syndrome is a bit crazy. We never know when an unexpected trip to the ER will take place. But Owen has taught us all so much and we know that each of our children are indeed a blessing.
15 Products that Make Parenting a Child with Angelman Syndrome Easier
Now let’s dive into those products that have really made a difference in Owen’s life. I highly recommend each of these if you have a child with Angelman Syndrome.
1. An Enclosed Bed
After years of fighting the insurance company, Owen’s epilepy worsened enough in 2019 that he was approved for an enclosed bed. We were so thankful when the medical company came and set it up in his room.
This bed? It’s Owen’s safe place. When he’s feeling a sensory overload, he goes into his room and climbs into his bed all by himself. We typically just leave it unzipped during the day to help him self-regulate.
Then we close him in at night. Knowing that he’s not able to get to the door and get outside again, or rip up and eat entire books while the rest of us are sleeping has been a game changer.
We are so thankful for his bed!
2. A Travel Bed
Before we got the big approved bed, we purchased an inflatable bed from Safe Place Bedding. It latest a lot longer than we originally thought it would!
Once we got this bed, we bought a new inflatable one. We use this on our ministry trips, because it’s so easy to set up when we get to where we’re staying.
We definitely can’t bring the big bed along, but this little one is perfect. Here’s a picture of my husband setting it up in a missionary house in Washington State.
Without a portable enclosed bed, we would not be able to be on deputation right now. It would be too hard logistically for one of us to always have to be with Owen at night so he didn’t get up and cause chaos in a space we are using.
This blue bed will be getting a lot of use over the next couple of years!
3. An iPad and a Good Case
Owen loves technology. If any of us are playing on the phone, he comes right over to see what we’re doing. And he loves his iPad.
He doesn’t have great fine motor skills, so he typically only uses it to watch movies and listen to music. But, having something he can do independently has been so important.
Of course, if we just let Owen have the iPad, it’d soon be broken. So, we put a durable cover on it. If you go with a cover without a screen protector, make the decision to invest in a screen protector too. We really like the ZAGG brand because of their warranty.
4. Chew Tubes
Owen is constantly chewing on things. He craves oral stimulation. Chew tubes have been a great way for him to chew appropriately.
Chew tubes come in a variety of shapes, sizes, and colors. They also have different textures for a variety of chewing sensations. Try a few different types and see what your child enjoys the most.
Also, always make sure your child can’t choke on the ones you pick out. Owen had some that were shaped like large LEGO bricks once, and he could fit the entire thing in his mouth. We decided it was too big of a risk for him (with his Pica) so got rid of them. Now we only select large chewies.
5. Lycra Swing
Owen loves his lycra swing. We hang it up on the swing set every spring, and he often crawls to it when we’re playing outside.
Then we help him in, and he enjoys getting swung.
We used to have it hanging in the house (as you can see from the picture above), but it pulled out of the ceiling eventually. Now we just use it outdoors.
6. Special Needs Stroller
Owen’s grandparents worked together to bless us with a large special needs jogging stroller. This thing is a pain to set up and fold down. But, once it’s ready to go, it is amazing.
It is easy to push and Owen enjoys being in it outside. The wheels are much better for rough terrain than the wheels of his wheelchair, so it goes in so many more places.
7. Wrap for His G-Tube
Owen has taken to pulling out his g-tube and eating it when he’s bored at night.
Yes, it’s as gross as it sounds. And his stoma starts to close, so we have to run into the ER when we all wake up and realize what happened.
Thankfully, a special wrap has curbed the habit a little bit. After going to the ER three times in December for this, we didn’t go at all in January, and only once in February.
So it is working!
We just went with the 2-panel version of this wrap.
I know they make special g-tube wraps, but they all cost a lot more. So we decided to try this one. And we just put it on snugly but not tight enough to push the g-tube in more or bend it.
This wrap, layered under one-piece jammies has helped a lot.
8. His Wheelchair
Owen can walk. But, he lacks balance, stamina, and self-control. So whenever we leave the house, he’s in his stroller or his wheelchair.
The insurance approved a new one last year, as he’d begun to outgrow the one he got back in 2015. This one is green:
Doesn’t he just look grown up now? He’s definitely not a little boy anymore…
Owen’s wheelchair can fit in the back of our 15-passenger van (we remove one half of the back seat). It also fits easily into the back of our Suburban.
He has a Zippie, and it serves him well.
9. Sippy cup
Owen loves to drink water. He is always thirsty. But, helping him drink from a cup can be a challenge. We both always ended up wearing it.
So we needed a way for Owen to be independent when it came to drinks.
We came across this Good to Grow style of juice several years ago. It was the first drink that Owen could use all on his own.
So we stuck with it. We buy new ones every couple of months, and wash the tops and refill them in the meantime. They’re inexpensive enough that we don’t mind throwing them away when they get gross. Or when he chews them and ruins the lid.
The younger kids also love these. So we make it simple and pretty much use these as our sippy cups.
We’d tried several styles before these, and Owen either couldn’t use it, or could easily destroy it. The straw style were the worst. He’d chew right through those.
So find something that works for your child, and go for it. Promote independence whenever you can for your child with Angelman Syndrome.
They need help with so much that it’s easy to think they need help with everything. They don’t…
10. Furniture Covers
This is a newly added “must-have” for my family. Owen is messy. He has poop parties.
And he likes to pick at seams.
He destroys our couches in a really short amount of time. And since we’ve only had our current set for a year or two, we didn’t want to buy another one yet again. So we started searching.
And found these couch covers. They have been amazing!
They’re a single piece, so he can’t access the parts he likes to pick. And if anything gross happens, we can just remove the cover and put it in the washer.
So much simpler.
We have one for one of our recliners and our couch now. We will be purchasing them for our other recliner and loveseat soon.
Did I mention they were amazing? And they come in so many colors…
They came with two tiny foam things to push into the cracks to keep it from slipping. Owen found those right away and tried to eat them.
That didn’t work. So we tried it without. But then the slip cover moved too much.
Then Bryan went to the hardware store and came home with some sturdy pipe cover that looks like a pool noodle but is thicker:
It runs the entire length of the couch, not just the corners. And Owen has completely left it alone for a month now. So that’s a win in my books!
You have to be creative when you have a child with Angelman Syndrome.
11. Harness in Car
Owen might be related to Elastigirl from The Incredibles.
At least, he sure has her stretchy super power. His arms can reach so much.
And that was a problem in the car. He kept reaching over and invading the space of whichever kid we made sit next to him.
We tried to get a special needs car seat approved by the insurance, but they said it wasn’t medically necessary. So, my Step-Dad got us a 5-point harness. It installed easily, and we use it in conjunction with the regular seat belt.
The combination does the trick (most of the time).
In the picture above, you can see Owen sitting in our 15-passenger van. The grey belt is his seat belt. The black one is the harness.
12. Backwards Jammies
Owen is like Houdini. He can get out of regular one-piece pajamas without using any energy it seems. And when you have a child who is awake a lot at night, and gets bored easily…you can see how being able to strip is not a good thing.
So, we started buying these special pajamas that zip in the back.
Owen has not yet been able to get out of these. I like that!
13. High Top Shoes
Owen really hates wearing shoes. He hates them so much that if he can get them off, he will. And then proceed to toss it, no matter where we are.
He goes barefoot most of the time.
But, there are times when he needs to wear shoes. So we’ve been experimenting with different kinds.
He tolerates high topped shoes the best. We’ve been getting boots, sort of like this:
He will leave them on the longest. Which we appreciate.
14. Sleep Meds
I put off using sleep meds with Owen for years. And I paid for that decision with a lot of sleep deprivation.
Owen doesn’t sleep much. Right now, it’s nearly 1 am as I’m writing this. And guess who I can hear loud and clear having a party in his bed?
And he’s already had his sleep meds for the night.
Typically they work better, but he’s growing again so we need to connect with the neurologist and get his dose adjusted.
When sleep meds work, they make a huge difference for everyone in the house. Looking back, I regret waiting so long to try them. They really helped reduce Owen’s seizures, which makes sense, since sleep deprivation can make seizures worse.
Owen is currently on Clonodine and Melatonin for sleep. He’s also on Onfi for seizures, but that also helps make him drowsy.
Sleep meds can be a game changer when you’re parenting a child with Angelman Syndrome. You’ve got to sleep as a caregiver!
15. Single Serve Applesauce
Speaking of meds…Owen needs to take those daily. (Actually he takes different meds in the AM and PM, so he has med time twice a day.)
At home, we just use applesauce. One jar will last just over a week.
But when we’re traveling, bringing along an open container of applesauce doesn’t work well.
So instead, we bring along hard plastic spoons (that he can’t bite through) and single-serve containers of applesauce. It’s the perfect amount for meds, and they’re small enough to fit in the diaper bag. Win win!
15 Essential Products for A Child with Angelman Syndrome
There you have it – 15 products that we use regularly that are essential for our child with Angelman Syndrome.
To help raise awareness, I’d appreciate it if you could give this post a share!