It’s February 15th! Do you know what that means?
It’s Angelman Syndrome Awareness Day. In honor of this rare disorder, which my oldest son Owen has, I’m continuing my tradition of posting an Angelman Syndrome post today.
You can find my posts from previous years here:
2016: 15 Ways Angelman Syndrome Changed Our Lives
2017:15 Struggles in Raising a Child with Angelman Syndrome
2018: 15 Blessings of Raising a Child with Angelman Syndrome
This year, I’ve been reflecting on how being Owen’s mom has changed the way I parent. In fact, here are 15 distinct changes I’ve recognized in myself over the years.
1. Recognizing Each Day Is a Gift
We’ve almost lost Owen multiple times. He wound up in the PICU after a routine ENT surgery when he was little. He’s had multiple foreign objects stuck in his throat. And he eats things you wouldn’t even believe if I listed them out.
Sharp things (sticks and twigs). Huge things (socks). Gross things. (Not going to mention any details here, you can use your imagination. It’s probably close! :D)
And while these have mostly passed, I worry about the long-term damage being done to his GI tract.
He’s struggled with seizures, and fallen as a result of them. He has so many scars on his head from getting stitched or stapled or glued back together.
And while the Lord has graciously preserved his life through each of these medical trials, facing them has made me realize that each day truly is a gift.
I don’t know what the future holds for any of my children. What I do know is that I can control my attitudes and actions on each and every day that I am able to spend with them.
As a result of this realization, I’ve become what many people would call more lenient. I don’t stress the stuff that doesn’t matter.
I really focus on building memories. And saying yes when I can.
Yes to spontaneous movie nights. Or days full of reading instead of normal “school.”
Yes to baking cookies together.
Yes to art and experiments and even playing Minecraft together.
Because, those memories are what matter.
And I think sometimes we get so caught up in the mile-long to-do list that we forget to enjoy spending time with the people around us.
Owen has helped me to realize that you should never take your loved ones for granted. You don’t know what tomorrow will bring, so don’t wait to make memories then.
Do it now. Love on your kids. Do something out of the ordinary.
And give your kids grace – they are just kids after all. Yes, you are training them and that’s important. You want them to be awesome adults after all. But, don’t expect them to be an adult right now. They’re still learning.
I try to give my kids a lot of grace, because I know my Father in Heaven is so gracious with me. I fail tons, and I’m so thankful He hasn’t given up on me!
It’s one of my favorite lessons as an Angelman Syndrome mom!
2. Promoting Independence
I used to be a very hovering mom. I loved to do things for my kids, and I thought it made me a better mom.
But, I was wrong.
Owen helped me to see the value in promoting independence. He isn’t able to do many things. There’s a lot he needs help with.
And this opened my eyes to the value of doing for yourself. I know Owen doesn’t enjoy not being able to dress himself. Or not being able to get himself a glass of water when he’s thirsty.
There’s something empowering about being able to do things for yourself.
So now I promote independence with my kids. They feed themselves from a young age. Even though it’s messy.
Once their physical able, they get themselves dressed and pick out their own outfits. I only step in if it’s completely inappropriate for the weather, or if we’re going someplace where they truly need to look coordinated.
Yes, I still help with buttons and zippers and things, but we work hard to master self-care skills.
And doing is how most kids learn.
3. Appreciating Each Child’s Uniqueness
My kids are all so different.
But, I used to want them all to fit the mold I had in my mind. I wanted them to do things a certain way (MY WAY!).
Owen’s uniqueness really made me appreciate the individual qualities that make each person.
And he’s helped me to learn how to give up some control, and let my kids do things in a way that works for them.
In the mornings, some of my kids are like me. They like to get up and get straight to work so they have time to do other things they want to do later in the day.
Some of my kids are slow to get going in the mornings. They’d rather sit by the fire for a little bit and watch everyone else as they slowly greet the day.
Some of my kids really want to eat breakfast the moment they wake up. Others aren’t hungry for an hour or two.
They learn differently. Some are very visual. Others are audio learners. Or Kinesthetic learners.
And me trying to force everyone to be a cookie cutter wasn’t doing anyone any favors. My way is not the RIGHT way. The way I do things works for me. It doesn’t work for everyone.
Owen really helped me realize that I was trying to stamp my image all over my kids instead of letting them be stamped by God. He has the perfect plan for their lives, and is slowly shaping them.
I’m here to guide them and point them to Him – not completely micromanage every aspect of their lives.
Maybe my kids who aren’t morning people will need to work nights in the future.
I have no idea.
So now, I’m providing boundaries and expectations, and giving my kids freedom to learn how they do things best. I’m stepping back and letting them learn from experience and mistakes. I’m here if they need me, and I’ll give them advice. But, I try not to dictate now.
4. Teaching Flexibility
I never know what a day will bring. Everything will be going according to plan, and then Owen may have a seizure, fall, and need to go to the ER for stitches.
He’s shown me that being flexible is key as a parent.
Things don’t always go according to plan, and that’s okay. Scrap the plan and make a new one.
We’ve gotten pretty good at putting together a Plan B or a Plan C spur of the moment.
But, when life gets crazy, make sure to keep your other kids in the loop! That way they aren’t left wondering what’s going to happen to them while you’re running to the hospital.
5. Appreciating the Small Milestones
When my oldest learned to roll over and sit, I kind of expected it. I mean, I was excited and took pictures and wrote it in her baby book.
But, at the same time, I knew she was going to do those things. So, it wasn’t something I really appreciated at the time.
Owen, however, had so much trouble meeting all the milestones. We didn’t know if he ever would.
So when he finally sat up on his own just before he turned one, it was celebration time! The same when he started walking at seven.
And you know what? He taught me to appreciate them with all my kids. Because you really don’t know for sure that they’re going to happen. So when they do, it’s a joyous occasion!
I learned not to wish that my babies would stay babies – you really do WANT your kids to learn and grow. Trust me on that one. Being an Angelman Syndrome mom has made that completely clear to me.
6. Increasing My Prayers for My Kids
I really started praying for my kids after Owen’s diagnosis. I mean, I “prayed” before, but it wasn’t even close to the same.
Now I talk to God about my kids. I pray for their safety. And their learning. I pray about their struggles.
I pray about their career paths. And future spouses. I pray about everything related to my kids.
Also, I ask God to make me a better mom. The mom that these kids need.
Owen’s disability pushed me closer to God, and I’m so thankful for that. I’ve grown so much in the last twelve years, and I can’t imagine how different life would be if that hadn’t happened.
7. Teaching Inclusiveness
Owen is teaching our whole family what it means to be inclusive.
The kids are great at naturally incorporating Owen into their play. If they’re playing tag, Owen is another “It” and if he touches you you’re out.
If they’re playing a running game, they try to get Owen to chase them. He enjoys bouncing on his knees after his siblings!
They play on the iPad with Owen and snuggle with him on the couch.
Owen is Owen – he is different, but no less important. Whenever possible, we look for ways to include him.
Owen teaches me to be aware of ways I can change to make life more accessible for someone else.
It’s required some thinking out of the box. It’s stretched me as a parent and as a teacher.
But it’s good for me!
8. Taking Care of Myself
Being an Angelman Syndrome mom isn’t easy. It takes a toll on me both physically and emotionally.
One way Owen has helped me change is by showing me the importance of self-care. I can’t help him if I’m too worn out or crabby.
Additionally, he’s very good at picking up on my emotional state. He reads me so well, and reflects what I’m feeling back at me.
I really do need to take some time regularly to recharge my batteries. It doesn’t have to be fancy or cost money. It doesn’t even require leaving the house!
I love heading outside for a walk, or reading a chapter or two of a book with a warm drink.
Doodling with my kids, cooking something that’s not on the menu plan, and playing board games all recharge me.
But, taking time for these things isn’t the only aspect of self-care.
I realized I always found excuses to not go to the eye doctor. Or the dentist.
But, I want to be there for Owen (and the other kids). That means I can’t let myself fall apart.
Exercise is another aspect. I need to be strong to lift Owen and help him with personal hygiene tasks. Getting a 12 year old boy who loves water out of the bathtub is not for the weak! 😀
So I’ve been exercising several mornings a week. And drinking more water.
I’ve discovered that when I’m cared for, it’s way easier to care for Owen. I don’t get frustrated as easily.
Take care of yourself!
9. Increasing the Screen Time
The iPad has been an amazing tool for Owen. Though he doesn’t have the skills to use it for communication yet like we hoped he would, it is something he can interact with. He can use his movements to make choices. And that is incredible!
(By the way, we recommend this iPad case – definitely invest in a good case if you’re letting a child with Angelman Syndrome use it!)
But, I haven’t always seen the value in screens. It’s easy to vilify them.
They’ve definitely changed society. And they’re easy to get addicted to.
But, Owen has shown me that they have enormous potential. They can do so much, and are so easy to interact with, that they are life changers for many people.
So I let Owen (and my other kids) have more screen time. They play learning apps together. They watch movies.
And that’s okay. Screens are not the enemy in life. They’re just a new part of the equation that we have to figure out how to handle.
We will all handle them differently, so remember that your way is not the RIGHT way. It’s just what works for you.
10. Scheduling with Flexible Routine Blocks
I’m a huge fan of time blocking, and I have Owen to thank for that. When he was younger, he had so many therapy appointments.
The only way we could stay on top of everything was to be purposeful with our time. Add unexpected appointments and trips to the ER, and life was getting really crazy.
So I worked on developing flexible routine blocks. And teaching them to the kids.
Now these building blocks come together to make our day. But, like actual building blocks, they can be arranged in numerous ways.
Owen have an unexpected doctor appointment in the morning? We can pick up the morning chores block and move it to the afternoon.
It’s a different way of scheduling that makes our whole routine incredibly flexible.
Because being flexible really is important when you’re parenting a child with Angelman Syndrome!
11. Cutting Back on Outside Commitments
It’s really hard to go places with Owen. He thrives in familiar environments. And we all know to expect him to try to rip books or eat Legos, so we keep the house as Owen proof as we can.
One way having Owen has changed my parenting is that I’ve cut back on tons of outside commitments. My oldest is my only child to have participated in any kind of homeschool group.
It just got too complicated after Owen’s disability became apparent.
And I’ve never tried to find another. I like to use the living in the middle of nowhere excuse, but deep down I know I wouldn’t join even if there was one. It’s just too hard!
It’s a whole lot easier to say no than to try to figure out how to make it work with a wheelchair and a boy with elastic arms that seem to stretch no matter how far away from something I park him.
This isn’t a good change – but it is an honest one. I do sometimes wonder if I’m doing the other kid a disservice though…
Traveling on deputation means I have to overcome this challenge. We will be visiting churches and people as a family, and I need to brainstorm ways to make this easier with Owen!
12. Adding Sensory Play
I’d heard about sensory play before I had Owen. After all, I did teach special education.
But, I never really saw the value it brought for all kids. We have so much fun playing in rainbow noodles. And painting with shaving cream on the table.
Owen showed me the value and calming power of sensory play. And now we integrate it frequently!
It does take some planning, because of Owen’s Pica. We can’t use many materials because of their size. But, we make do with what we can use and see how much fun we can make it.
13. Remembering that People Are More Important
When you get a brand new book for Christmas and the next day it’s ripped to shreds because your son with Pica decided to eat it…it’s frustrating.
You want to cry and scream and get mad.
But you know it won’t do any good. Because the damage is already done. No amount of screaming is going to put the book back together.
Now you must decide if you want to damage your relationship because of a book.
People are more important than things.
This is a lesson Owen continues to teach me. It’s amazing how God uses Owen to polish some of the rough edges off of me…
Our stuff is just stuff. And no matter how important we think our stuff is, it truly isn’t.
14. Building Patience
It takes Owen forever to climb out of the Suburban. But, he can do it. So I try to make him as long as the weather isn’t bad.
It takes him even longer to walk to the bedroom for bed each night. But, it’s good for him to do it.
Owen has helped me become more patient. He has his own time schedule, and “hurry” isn’t on his clock.
When I start rushing him, I just get frustrated. I’m learning the value of patience.
It’s okay to do life a little more slowly. It’s given me time to stop and appreciate the small moments.
And as I increase in my patience with Owen, it impacts the other kids as well. I’m more patient with all of them. Which is a good thing – especially when you discover the toddler with the toothpaste, Ramona style.
Patience is definitely important as a mom, and I’m so thankful Owen helps mine to grow.
15. Learning to Communicate without Words
Owen can’t speak. He has a vocabulary of exactly zero words.
But, just because he can’t talk doesn’t mean he doesn’t have anything to say.
Owen has taught me that communication isn’t just words. There’s so much that goes into it.
And I’m able to understand much of what Owen tells me.
Just like you learn what the different cries of your baby means, you can learn what those who are non-verbal are trying to say if you take time to listen.
I can typically tell when he’s hungry. Or cold. And when he’s bored and wants something to do.
I know when he’s thirsty and I sometimes can tell when he has the use the bathroom.
I’m not perfect at this. There are times when I get it wrong.
But, I’m learning that words aren’t always necessary.
By learning to rely on cues, I’ve become better at picking up emotions in my other kids. I can often tell when they’re on the brink of a breakdown and take steps to deescalate the situation with humor or distraction before they go over the edge.
I can see when they’re frustrated. Or are trying to decide if they should talk to me about something or not.
It’s opened the door for a lot of deep discussions with my kids.
And had it not been for Owen, I doubt I would have learned to pay this much attention to the non-verbal communication.
15 Lessons from an Angelman Syndrome Mom
There you have it, a look at many of the ways having a child with Angelman Syndrome has changed my parenting. For better or for worse, it’s definitely impacted who I am as a mom.
And I truly am thankful for the growth Owen has brought in my life.
Would I take away his disability if I could? Absolutely!
But, I know that it’s helped me to grow so much. And I’m very thankful for that.
I love Owen so much. He’s an incredible boy who has overcome so much in his life. And I can learn a lot from him!
Do me a favor? Please share this post to help raise awareness for Angelman Syndrome. There’s exciting research being done with clinical trials and potential life changing treatments – and the more this rare disease becomes visible in America, the better!