Saturday, June 9, 2012

Independent, Determined, Fearless

One thing Ayden Jane does not lack is confidence.  She has no idea that there are perceived limitations about her because of a bit of missing genetic material.  She attacks life with an expectation of success.  She may actually think she is a super hero.  You know, indestructible and capable of anything.

Sometimes being so independent, determined and fearless spells Trouble (yes, with a capital T).  Here are a couple of stories for your entertainment (since she is safely sitting next to me playing) and for me to share with Ayden Jane one day!

First the ocean.  Ayden Jane loves the ocean and she is quite sure that since she can swim, she can go anywhere in the ocean all by herself!  The other day she was on her boogie board "surfin'" as she calls it.  The water was totally calm.  I mean so calm young kids were kayaking in the ocean.  Seriously, it was more like a lake or pond it was so still.  Ayden Jane hopped on her board and headed out beyond the tiny breakers and started kicking her way to Europe!  I called her in and she wasn't making any headway so out I went.  She was out over MY head at this point and I had to tow her back in.  She was great for a bit and the out she went again.  The second time when I started to come for her she jumped off her board and dove under the water to 'hide' from Mommy.  She thought it was great fun until Momma made it eminently clear that there would be no more boogie board if we EVER had that problem again.  Problem solved, except for the part where she is still convinced that she would have been fine.

The second time (this week!) she exerted her independence....  Was Thursday morning.  During the night there had been a bit of musical beds.  Ayden Jane ended up in bed with Gary and I was in AJ's bed.  Ayden Jane always wakes up between 6 and 6:30.  I woke up but had no clock it 'felt' like time for AJ to be up, but the house was quiet so I rolled over and enjoyed a few quite moments of pseudo sleep.  As it was nearing 7 I started to wonder, then heard the dogs barking.  I got up and as I was heading out of AJ's room the doorbell rang.

My first thought was that Ayden Jane and Gary were outside feeding the dogs and Ayden Jane was being funny.  I went to the door and sure enough Ayden Jane was there... in her pull up... with 2 people I don't know.

I had forgotten that Gary was leaving really early for a class.  (he works nights so is never leaving in the AM)  The nice couple had found Ayden Jane out and about on her bike and returned her home.  AJ was about .75 miles from home getting ready to cross a busy street to go play on the elementary school playground!  Ummm, excuse me Ayden Jane but you HAVE to have somebody with you!!

She understands that she cannot do that again or she will no longer have a bike.  I don't think she really gets the danger involved in what she did.  I tell her that she could have gotten hurt, hit by a car...  She says, but Mom I know how to ride on the side of the road.  I told her a mean guy could have taken her.  She answered that she knows better than to go with a mean guy.  I told her somebody could have taken her whether she wanted them to or not and she informs me that she if fast enough and strong enough to get away from anything.  UGGGGG.

Since she was tiny we have noticed that 'protective reflexes' and other understanding of danger just did not exist.  She can learn them, but she has to experience to learn.  Don't touch the stove it might be hot - burnt hand.  Hold on tight when you swing so you don't fall - banged head.  Ask for help to get down if it's too high - jump off the top bunk and discover the meaning of too high.

She amazes me daily with things she learns to do purely by shear determination and perseverance.  She gets it in her mind and she does not quit!  Sometimes I think if I used every ounce of my ability like she does, what could I accomplish?  It is an incredible way to live.  No "I can'ts" no fear of failure,  no limitations in her own mind, positive that everything will work out.

I pray we can keep her amazing spirit intact and teach her only enough reality to keep her safe. Along the way I also pray the rest of us will live more like AJ.


  1. Oh how scary!! Aubrey is the same way...I'm not sure he will ever truly learn "danger" but I am thankful he now usually watches for cars crossing the road without us. He also has no fear and was born swimming. He always scares life guards as he is able to stay under water for an unusual amount of time. I'm so glad AJ was ok! I think they have extra guardian angels.

  2. We're happy that AJ got home safely! In our 20 years doing research and helping people with PWS, we've noticed that this is a really common behavior. You are very brave for blogging about this.

    Our "Behavior Tip of the Week" for this week (which we post on our Facebook page every Wednesday) was inspired by your post.

    You can see our tip here: