As I spent time reflecting on my most popular blog posts of last year, I realized something important.
Nearly all of the search terms that bring people to my website have to do with Angelman Syndrome (AS). I’ve written a bit about our life with Owen, our eleven year old with AS. But, it was never a topic I thought about including regularly.
Until now.
While doing some reflecting and planning with my husband, he encouraged me to write more about Angelman Syndrome. So I’m planning to. I hope to post honest, encouraging posts to others looking for information about this rare disorder. They’ll mostly be more raw than most of my other posts around here.
My goal is to publish one AS/life with a special needs child post per month. I’ll get a new Life with Angelman Syndrome page added to my site soon to house all of this content.
This month, I wanted to focus on a topic that’s been pressing on my heart lately. The Lord has been showing me a problem I have, and with His help, I’m slowly getting better.
The Squeaky Wheel Gets the Grease
I’m sure you’ve heard the saying, the squeaky wheel gets the grease, right?
Well, unfortunately, I’ve realized my talking kids also seem to get most of my attention. They’re constantly running over to show me something. Or tell me about a dream, or how their day went.
With all their chatter, they’re very hard to miss.
But, my Owen can’t talk. He never runs over to me to show me something. Or cries out “Mom! Pay attention to me for a change!”
He just sits quietly, usually lounging directly in front of the fireplace.
And I realize how easy it is to ignore him.
Oh, sure, I’m taking care of him throughout the day. We take care of meds and pottying and getting dressed. He needs physical help at every meal. I pull dozens of things out of his mouth every day.
And so we are spending lots of time together each day. In fact, I have my eyes on him throughout the day always watching for seizures or choking, or another problem.
But, it’s not the same as with the other kids.
Owen often gets the short end of the stick I’m afraid. He’s often left out. Life with Angelman Syndrome isn’t fair. And actually life in general isn’t fair.
But, I still can do better at ensuring he’s included and enjoying life. I can get better at spending time WITH him instead of just caring for him.
Lack of Communication
Because Owen can’t talk, I have to try and interpret his desires, interests, and needs. We do a lot of intuitive communication – I know how to read him after being his mommy for so many years. Some of the kids are pretty good at reading him too.
Our little Sydney seems the most in tune with her big brother Owen. Those two have always gotten along, and she really advocates for him. It’s amazing to watch.
So though we’re getting better at communicating with Owen, it takes effort on our part. We have to be watching and expecting. And when life gets crazy and the other kids are running up talking, it’s not always on the front of our minds.
Which is part of the problem I’m working on.
Activity List
I had the kids help me create an activity list for Owen. These are things he can safely engage with. Tasks and activities the other kids or I can do with Owen.
We use these during sibling play time, and I’m using them during my special time with Owen each week. It’s helping to not have to try and think about what to do. We can just pick an activity and go.
So here are the top ten activities we think Owen enjoys. (disclosure: these are affiliate links. If you click through and make a purchase, I’ll receive a small commission at no cost to you. Thank you!)
1. iPad Apps
Owen loves his iPad. His eyesight isn’t great, so he enjoys being able to pull this close. The kids also enjoy playing with the iPad, because they don’t get a ton of screen time so it feels like a treat.
Typically, the other child plays and Owen watches. Sometimes Owen will tap, but his movements aren’t yet purposeful for playing games.
He likes watching apps with music. He also really likes the TocaBoca series.
It’s taken some time to find an iPad case that holds up well to his drooling and banging. We’ve had to replace the screen when we selected the wrong one!
So far, the OtterBox Defender has done the best job protecting the iPad. We’re using it on two different iPads right now (a 2 and a 3!)
2. MegaBloks
Owen loves taking things apart, and MegaBloks are big enough that he can’t eat them. Well, he can chew on them but he hasn’t yet swallowed any.
I try to keep a variety on hand so the kids can build all kinds of things. Then they hand them to Owen and he giggles as he rips them apart. Then they do it again.
I found a great collection of Mega Bloks at Goodwill in the toy section. There was a huge bagful for only $4. Score!
I’ve also purchased this set for the kids.
Then I just store them all in a plastic drawer. The kids can pull it out to play with Owen and then easily put it back together.
3. Lycra Swing
Owen’s Occupational Therapist from the Elks helped get Owen a Lycra Swing, and he LOVES it! He’ll spend an hour in here in the summer as long as someone gives him a push every once in a while.
The other kids like to get in too, so when Owen crawls out someone else gets in. Our new playset in the backyard is the perfect place for the swing.
For a while we had it hanging in the living room, but the hook pulled out of the ceiling, so now it’s an outdoor toy! We just bring it out when we’re ready to use it, clip it onto the set where we pulled down another swing, and then bring it in when we’re done.
This one is similar to the swing Owen has.
4. Teeter Popper
Owen got this for Christmas this year, and he really enjoys the noise it makes. A couple of my kids can put him on it and start rocking him.
The younger kids sit on it and rock while Owen listens and tries to grab the side to help. It’s a lot of fun for them!
5. Musical Toys
Owen has always loved music! He has two versions of this toy, the school bus and an ocean one. I love that he’s actually able to produce sound with them.
His banging is effective to make it work. So he can sit and make music and the other kids can put more finesse into their motions as they play together. Having two means they can be together and don’t have to fight for space on the one.
6. Snuggling and Watching a Movie
Owen is a snuggler! And he loves many movies. So he and his older sister often snuggle on the couch with a movie. He also likes to snuggle with me and my husband.
Here are five of the movies Owen will watch over and over (and over and over) again:
- Wreck-It Ralph
- Toy Story
- Trolls
- Lady and The Tramp (50th Anniversary Platinum Edition) [2006]
- Frozen
7. Water Play
Owen, like most kids with Angelman Syndrome, is drawn to water. He loves splashing in it. He’ll stand at the kitchen sink and play for quite a while. But, someone has to be right there with him to ensure he doesn’t leave the sink and get into everything else.
We add some dish soap to make bubbles, and give him some of our big stirring spoons to play with. He really enjoys this activity!
I just have to plan on the kitchen flooding when he does this, so I put plenty of towels on the floor beforehand. I also always plan on changing Owen.
If I go into the activity knowing there’ll be a mess, it’s easier mentally to cheerfully take care of it. I can also time it so I make sure I give myself time for this aspect.
In the summer, Owen will also love playing outside in the sprinkler. He hates being cold, so he doesn’t spend time outside all winter, or even a lot of the spring and fall. But in the summer’s sun, he’ll sit on the grass and play in the sprinkler for quite a while.
Here again, we always set up two sprinklers if the other kids want to play. That’s because Owen frequently flips the one he’s at, which can frustrate the other kids. Having two, spaced out a bit and on separate hoses, means there’s always one the other kids can use.
8. Play Tunnels and Sacks
We have a lycra tunnel, and a therapy sack and Owen enjoys them both. They’re a calming place for him. The other kids love them too. A couple of them can hold the tunnel and then Owen crawls in. Some of the smaller kids can fit in the tunnel with him and go around him.
The sack is fun to use when we’re having a dance party. It keeps Owen from trying to shut the laptop and he gets to enjoy bouncing inside of it. When Owen isn’t using it, the other kids will give it a try!
9. Pushing Cars
Most toy cars aren’t a good fit for Owen. They’re too small, or have wheels or other parts that pop off easily. But, we have a couple of cars that are fun for Owen and other people to play with.
Most of them are from Green Toys. They’ve held up well to rough play! Owen can roll them a bit. Then he can pick them up and chew on them a bit and go back to playing. It’s fun to see him play.
10. Bubbles
Bubbles are an amazing activity for integrating kids of multiple ages and abilities! We’ve had a couple of different bubble machines over the years, and the kids will play together with the bubbles for quite a while.
Our most recent machine recently broke, but the kids still enjoy bubble play. They’ll blow bubbles and Owen has a blast trying to pop them. It’s fun watching him stretch up and try and grab them.
If we put some music on, it’s even better! Popping bubbles and listening to some tunes. Such a fun way to include everyone!
Being Together Instead of Just Caring For
I’m excited to have this list, and plan to keep adding to it. It’ll help us all to get better at actually spending time with Owen, not just spending time caring for him.
There’s definitely a difference between the two! And I’m enjoying spending more time WITH Owen. He’s a special kid, and such a joy to be around. And his smile. When he’s happy, it lights up the room. We all love seeing Owen happy!
If you have a child with Angelman Syndrome or another condition in your life, have you ever experienced this realization? I’d love to hear what activities they enjoy!
