Promoting Independence in a Child with Angelman Syndrome

As Owen, our child with Angelman Syndrome, grows, one thing become obvious. He is getting bigger and stronger, and I will not always be able to do all the things I am currently doing to help him.

I just won’t be strong enough.

He’s beginning puberty now, and I know he has a lot of growing left to do. And though he his small for his age, I have no idea how big he will be when he’s man-sized.

This means promoting independence is essential.

Why Promote Independence in a Child with Angelman Syndrome?

I’ve written before about how my expectations for Owen used to be much higher. Then in 2012 he had such a bad medical year that we thought we were losing him. Several times.

And while the Lord preserved his life, all those seizures he had did take a toll on him and his abilities.

Combine that with a busy household, and doing for Owen became easier than making him do things on his own.

So for years I completely fed him all his meals, did all the lifting into and out of the bathtub and other seats, and basically didn’t expect him to do much of anything.

Big mistake!

Because now I am realizing that taking care of a small child with Angelman Syndrome is going to be much different from taking care of a teenager or an adult with the condition.

I need to work with Owen and allow him to do as much as he can.

Otherwise we will both be in for a shock when the day comes when I can no longer lift him.

And this longer term perspective has really made me think…

There is a good chance Owen will outlive both my husband and I. Will his future caretaker want to do (or be able to do) everything for Owen that I’m currently doing?

Probably not.

So it’s time for ME to change.

How to Promote Independence in a Child with Angelman Syndrome

Practically speaking, how is this looking?

Well, it’s me stepping back and saying – you can do that. It’s me empowering Owen to his full potential AND BELIEVING THAT HE CAN DO IT!

He has so many abilities, and for years they were sort of clouded over under my fear of losing him. I was so worried that “today could be our last day together” that I went too far in my efforts to ensure he was happy and well taken care of.

Now I have years of catching up to do. And I truly had to apologize to Owen.

He really can do many things. I just have to step back and let him. I need to have patience, and understand that he will not do it the same way I would have done it.

He won’t climb the bus steps as quickly.

Or eat without making a mess.

He will take longer and do things his way.

And Owen’s way is truly okay. <=Something I had to realize. I was trying to make him fit in when he really was born to shine. He is different, and there is nothing wrong with embracing different. I was holding Owen back because it was quicker or neater to do it myself. The ironic part?

I really work with all my other kids to promote independence so I had time to do things for Owen…

Oops! That realization was an eye-opener for me.

So now I’m learning to take cues from my husband. He’s very much a fan of making Owen do things on his own. I have been “babying” him.

And while there are still times when expedience will be necessary, it should be the exception not the rule.

Here are some specific things I’m doing differently now.

Making Owen Walk

Owen learned to walk when he was 7. His balance isn’t great, and he doesn’t go quickly.

And he HATES wearing shoes.

So, though he walks around the house a bit, I pretty much always packed him out to the car or bus.

Now, I’m putting shoes on him and making him walk. He has been doing pretty well, and his stamina is increasing as a result.

He’s also been better about leaving his shoes on. I found a pair of sturdy sandals that he’s tolerating pretty well. I haven’t found the perfect shoe for him for winter yet, but I’m looking!

Assisting Instead of Lifting

Picking Owen up and physically moving him from his enclosed bed or to the bathtub or whatever has been my standard practice.

Now, I’m remembering everything his therapists talked about assisting. So instead of lifting Owen into the tub, I’m supporting his upper body while he moves his legs up and over.

I unzip his bed in the morning and he learned pretty quickly to maneuver himself out of it. Some days he stays in bed for quite a while after it’s open, but he will eventually decide he’s ready for the day.

This independence has given Owen more say over himself. I never knew that some days he’d like to just stay in bed listening to the house and wake up more slowly.

I’m also giving him more independence in the tub. He’s proven he can safely climb out of the tub and onto the mat on the floor, so now I’m letting him bathe longer. He loves the water, and so I’m giving him more independence to stay and play. To do what he enjoys.

Because of his seizures, we just make sure to listen carefully and check on him every couple of minutes.

He loves turning on the shower and letting it run over him. It’s neat to see him learn new skills.

When he’s done, he climbs out and I help him dry. Then I make him walk to his bedroom or the living room and help him get dressed.

Getting Dressed

The bigger Owen gets, the harder it is for me to change him and dress him. He doesn’t fit comfortably across my lap anymore, which is how I did it for years.

So now I’m working with him on ways to help get himself dressed and undressed. Instead of completing taking his pants off for instance, I get them down past his waist and have him step out of them one foot at a time.

I’m working with him on putting arms into shirts and some other basics.

Because the more Owen can do, the better it is for him and his sense of self-worth.

Getting Into and Out of Vehicles

Owen can climb up into both the Suburban and bus. He has a really hard time maneuvering himself into the backseat of the Suburban, but once he’s up, he’s a lot easier to assist.

He can climb the bus steps and crawl or walk back to his seat.

Not having to lift him has been huge! And I love seeing the smile on his face when the other kids praise him for getting into the car.

He can also get out on his own.

In fact, one day I had just unbuckled him from the Suburban and then went to pack in Bryson first.

While I was unbuckling Bryson, I saw Owen slide out of his seat. I kept watching him.

He slid out of the car, hanging onto the door for support, and then stood up fully. He walked over to the porch steps, got down and crawled up them. Then he walked over to the door, opened it, and went inside.

I was shocked!

So now as long as we’re not getting home after dark, I unbuckle Owen and let him do the rest.

Things We’re Working On

Owen really loves climbing the stairs into his brother’s bed during quiet time. (There’s a neat staircase dresser that came with the bunk set…)

But, he hasn’t yet figured out how to get down. So while I used to just lift him down immediately, I’ve been working with him on throwing his legs over and maneuvering onto the steps.

Once he’s on the steps, he can get down. It’s just that initial climbing out moment.

So now we are opening the door to his room and letting him know snack is ready when he wants to join us.

He hasn’t yet climbed down on his own, but I keep giving him opportunity. I give him time to think about it, something I never used to do.

And I know that one of these days, he’ll get from the top bunk out to the living room safely and on his own.

I’m also working on independence with feeding at home.

Owen sits pretty well in the chair with arms at the end of the table, so that’s where I’ve been putting him.

Then I cut up his food and put it on a non-breakable plate. I give it to him with a fork and let him eat.

Nope, he doesn’t use a fork for me (he will for his OT who comes to the house…).

But, he is eating on his own.

It’s messy. Very messy. Owen is very hands-on with his food.

But he’s eating and I’m not feeding him.

Some foods are still difficult – if you can’t use a utensil, soup becomes a problem. Thankfully it’s also hard to feed someone, so we rarely eat soup. Clam chowder is the only soup on our menu currently.

This month, I fed him. But next month I’m thinking of using a slotted spoon and pulling out potatoes and clams for Owen. Those could go on a plate with some crackers and just a little broth poured over the top for flavor.

It’s what I’ve done for my younger kids for years – I just never really thought about doing it for Owen too.

There are still things I need to feed him. Owen MUST take his medication, and I use applesauce or yogurt to give it to him with. In order to make sure he actually eats the meds, I will continue feeding those.

But I keep reminding myself that every meal Owen eats on his own is a huge step forward! It is worth the mess.

Benefits of Promoting Independence in a Child with Angelman Syndrome

There are definite benefits in promoting independence. Every child loves doing things on their own, and being one of the “big kids.”

Owen’s no exception.

I’ve noticed a definite change in his behavior.

Now that he’s working his muscles more and having to problem solve to figure out how to move to do something, he has less energy to destroy.

Don’t get me wrong, if things are out and he can reach them he absolutely will still rip them up and eat them. He still eats LEGOs that get left downstairs, and things like that.

But his seeking to see what he can devour has been curtailed. He’s more content to just sit on the couch and see what’s going on.

When we bring out the Mega Bloks for him, he’s more content so sit and play with them instead of seeing what else he can find.

And he’s enjoying hugging and snuggles without choking anyone.

Owen is also getting stronger and building endurance.

Additionally, teaching Owen to do things on his own has been great for me.

I’m realizing how much I was holding him back, and how differently I was treating him from all the other kids.

I really promote independence in the other kids, and until recently, I wasn’t with Owen. I just didn’t expect him to do much, which was doing him a huge disservice.

It’s also good for my back (especially now since I’m nine months pregnant with baby nine…) to not lift him as much. Assisting is much more friendly to my muscles than packing and lifting.

Negative Parts of Promoting Independence with Owen

Teaching a child with Angelman Syndrome (or any child really…) to be more independent isn’t all cupcakes and roses. There are some negative aspects.

It takes longer.

And is messy.

And there’s a great chance of the child getting injured. Owen could easily fall off the top bunk while trying to get down.

Or get hurt climbing up the house steps.

His risk of injury is higher, especially when you combine his bad balance with his seizure disorder.

But, risk is part of growing up and doing things. Any of my kids could fall.

I have to keep reminding myself that Owen isn’t the only one of my kids to break a bone or need stitches.

I can’t keep Owen in a protective bubble for his whole life. His quality of life matters – and doing everything for him isn’t good for him.

So it is worth the messes. And the waiting.

We do what we can to minimize the injury risk. I assist with many of the transfers, and with this many people in the house, there are almost always eyes on Owen.

He might get hurt.

But so might any of the other kids. I won’t always be there for them. Or Owen. So as I’m teaching and encouraging them to be their own person, I continue praying for them. For their safety. And for wisdom as a parent.

And I’m learning that the benefits of independence far outweigh the downsides. Owen knew it all along, I just had to figure it out and believe in him.