Thursday, October 25, 2012

Playground or Jungle

I have the privileged of 'working' at Ayden Jane's preschool.  It is fun to get to know all the kids and see Ayden Jane in her environment.  I am not in the classroom much, partly because I think I would be a distraction for AJ and partly because it just hasn't happened.

I do see AJ a lot on the playground.  She has sort of evolved in her playground skills over the years at St. Peter's.  In the 2's I am not really sure what she did.  I know she figured out how to pump a swing and she liked to slide, but I have no idea if she really used those skills much at school.  In the 3's it became evident that AJ was way better at talking to the teachers than playing with her peers.  She spent much of her playground time standing around the teachers and talking to them.  She just didn't really know how to play with the other kids... Now that she is in the 4's, it has been awesome to see her playing.  No more teacher stalking.

This leads me to the real reason for this post.  We all know that the preschool years and for a long time to come, the playground is a bit of a jungle.  Kids are sorting out how to play together, the give and take involved.  They are also learning about a 'social ladder' of sorts.  They likely can't explain any of this, but you sort of see a survival of the fittest unfold.

The other day I saw AJ and stopped to say hi.  She was playing in a tunnel of the playground equipment, just sort of talking to herself.  I asked her if she wanted to play with ____ just to see what she would say.  Her answer surprised me.  She said, "I can't play with her.  She and ____ told me I can't play with them."  Now the mama bear in me wanted to drop kid those cute little girls, but I know that Ayden Jane needs to learn to stand up for herself.  I told her that she could play with them and to ask again if she wanted to play.  To tell them that they could all play together.  I wandered over to her teacher and told her what was up and just as we looked over to see how it was going, AJ was asking to play.  Her question was received by the answer no and a shove.

Yes, her teacher called the girls over and handled it.  After that all 3 went off together ready to play.  Well, until the kindergartners came out and a boy called for AJ to come play with him.  She ditched the little girls in a flash!

As I thought about the experience later in the day, I realized that Ayden Jane displayed an amazing self confidence.  Honestly, probably better than my other girls would have.  When told no by her friends (well one of the girls is a friend) AJ was not crushed or angry. She did not wonder what was wrong with herself.  She did not try to win their approval.  She simply went off to find something else to do.  When given the opportunity to forgive, she did so quickly and was happy to play with the girls with no hesitation.

Ayden Jane showed me that she is happy with who she is and that her self confidence and self worth is not based on anyone else.  What more could I ask.  I think they may be the best skills possible to survive the jungle.  (I mean playground)

Monday, October 22, 2012


I have a series of books that I have used with all of our kids.  They are called Bob Books and the approach to reading is so simple it is brilliant.  (like most great ideas)  The first book in the series introduces the letters M, A, T and S.  The entire book is written with these 4 letters.  The pictures are very simple which I have found helps to keep the kids focused on the words.  The next book introduces a couple new letters... and so on.  Voila!  A totally phonics based book series that is a great, fun way to learn to read phonetically without doing any worksheets, flash cards...

Now, this is not just an ad for the books.  Ayden Jane just turned 5 a few weeks ago.  She does not go to Kindergarten until next fall so I am not really in a rush to get her reading, but I noticed that she is getting pretty good with the sounds of letters.  I have had the first set of books around for a while for her just to look at and get used to.  Tonight I asked her if she wanted to read a book to me before I read to her.  She was game.

She told me what sound all 4 letters make without hesitation.  I told her to use the sounds of each letter, not the names to figure out what the words are.  It was painfully slow as she named the sounds for Mat,  mmmmmmm....... aaaaaaaaa...... tttttttttttttt. and it took a minute for her to get the hang of running them together to 'hear' the word they make.  She got it though!  I thought she might phase out as even though the book is short, it must seem long when working that hard.

So many things were going through my mind.  Memories of Kayla at age 4 determined to master the books and so focused that I nearly begged her to stop!  Memories of Kayla and Noah curled up in the top bunk as Kayla helped Noah read the very same books.  Memories of Mckenna being so proud of reading a whole book just like Kayla and Noah could do.

At the same time there was something so amazing about Ayden Jane still being a year away from Kindergarten sounding out the very same books.  The part of raising Ayden Jane that is special needs parenting is exhausting at times.  She is just high maintenance and it always feels like even little things can make or break her entire future.  (I know perspective will hopefully lessen that feeling)

On the flip side though, the little accomplishments create such and immense joy!  The sort that is a mixture of pride, happiness, celebration and relief all rolled into one.  I do my best to revel in these moments.  To take comfort in these moments.  To do my very best to remember all the emotion and joy and use it to carry me through the next challenge...

Friday, October 19, 2012

I'm Not Really Hungry

I NEVER get tired of hearing Ayden Jane say the words, "I'm not really hungry."  Yep, that's right.  I am still hearing these words often these days.

Last night after a full day of school and then soccer practice and playing on the playground I asked AJ if she wanted to swing by Chik fi a.  I know... not a good choice to offer such things to my sweet little PWS child, but she had eaten a hard boiled egg, cheese stick and a few grapes for lunch at noon.  Then some nuts at 4:30.  It was now 7:30 and it was a half hour ride home.  Any kid should have been starving!

At first Ayden Jane said, "that would be great!"  I fully expected that answer...  Then a few minutes down the road she said,  "Mom, can we just go home and have some nuts or something?  I'm not really hungry."

No, I did not end up swerving off the road.  I did, however, pretend I didn't hear her and asked her to repeat it just so I could hear her say it again  :)

Wednesday, October 17, 2012

The Other Shoe

Ayden Jane is still doing so great.  She is not concerned much with food, doing great in school, hilarious around the house...

So, the big question is why am I so stressed when it comes to her right now?  I feel like I am constantly waiting for 'the other shoe to drop' so to speak.  I guess last winter took us in the wrong direction and I felt the reality of how quickly things can go awry that I can't help but to worry about it.

Sometimes I feel like I am in such a no man's land with Ayden Jane.  I technically am the parent of a special needs child, but to most people AJ is not a special needs child.  Sometimes it is hard when hanging around with other parents and their little ones and watching how easily things come for them.  How the assumption is just there that their child will read, write and do all things in school successfully.  That they will have friends and play sports or be in the band...  All the typical ideas and dreams parents have of their kids.

I really have no reason not to picture all those wonderful things for Ayden Jane as well, but I feel afraid to do so.  I guess it is a way of guarding my heart.  Five years ago when she was born we feared the worst.  As each day passed, she improved and tests for horrible things came back negative.  We began to allow ourselves to picture her life as all good...  Then things changed and we met Prader Willi.  We were told things that made the beautiful picture in our minds of her life darken.

We did not allow that to slow us down or stop us and we learned not to believe in a diagnosis, but to believe in Ayden Jane.  She showed us daily that she could handle any challenge head on and she proved quickly that she was Ayden Jane, an individual who would not be defined by a diagnosis.

Last winter was hard and we sort of met the Prader Willi that is lurking in there.  For whatever reason infection/illness lets it run rampant.  We learned first hand that food seeking, hunger and behavior issues with PWS are hard to live with.  Then this Sept. we received glasses and a diagnosis of scoliosis.  More evidence that Prader Willi is always there and pops up at a moments notice.

Even as I reread the thoughts I just wrote I see and feel the tug-o-war inside of me.  I totally believe in Ayden Jane because she has made me a believer but I struggle to trust she and I will be able to continue to conquer all the challenges.

It is a cycle we all parents with PWS (and likely lots of others) deal with.  New challenge like scoliosis - knocks the wind out of you - you panic a bit - you rally your troops - you make a plan - you dive in and refuse to allow it to win....  You begin to think maybe all is good, but you are still a little scared. 

Friday, October 12, 2012

Slow Down

I did not think it was possible for life to get busier.  Alas, it has...

Kayla has made it home a second time, this time for fall break.  Thought we were going to have to make the trip to Clemson to transport her, but a friend lent her their car for the low, low price of a trip to the airport.  Awesome!!

Noah is continuing through his senior year.  His life is a bit of a blur between school, work, college searching, training hard, going to colleges to train with teams and check out school... On the side he is an amazing brother to his little sisters and helps me out when he can.  Even though I don't rely on him often, I do rely on the fact that I can always count on him.

Mckenna has become our all around kid.  Currently she is taking art classes, playing soccer, singing in choir, involved in church youth.... pretty much everything she can possibly fit in.

Ayden Jane is getting pretty good at handling her full week of school, therapies and a soccer team of her own.  Not to mention being the classic younger sibling who goes to all the big kids games....  Luckily she loves to be on the go.  It is tough when she crashes though!  No middle ground with this kid.  Generally she is happy and nutty but when it turns, she is miserable and grouchy.

Just as an example of a couple days in the life of AJ.  Wed. she had OT, school, PT and then went to a pee wee football game MJ wanted to see then to take the dogs for a walk with Gary.  Thursday she had school and an evening soccer practice followed by an extra 45 min. on the playground.  Friday was school, the homecoming parade and the homecoming football game.  (Bed at 10)  Sat. she had a soccer game at 9, Mckenna a game at 11 and 4.  It just never stops.

I guess I would love it all if it would just slow down a bit and let us enjoy the ride...

Monday, October 8, 2012


Wow is all I can say about the past few days. Well, going on a week now.

We switched to Augmentin to clear out the nasty bacterial infection and it won.  Totally won.  All green goo gone, sleeping well, reasonable and rational behavior (for a 5 yr old) ... I almost forgot how much fun this kid is!!

Then has come the strangest thing of all.  She is totally unconcerned about food.  She has turned down/put off meals and snacks.  She can suddenly go a long time between meals/snacks with no problem.

Let me attempt to put this into perspective.  When ill with infection Ayden Jane struggles with PWS in ways that many kids struggle on a daily basis.  The biggest of these is food.  She is hungry, a lot.  She cannot walk past food without it calling to her and convincing her she should have something.  She may even sneak food because she just cannot resist.  She will ask for things she does not typically eat and be really hopeful that today the answer will be yes.

On the amoxicillin when the infection was calmed but still surviving somewhat, AJ was better.  She would not ever turn down food but was not preoccupied with it.  You could see her feel the pang of wanting something when others were eating or she saw something, but she could handle a reminder that she had just finished hers...  and move on.

The past week after (In my opinion) the Augmentin finally killed the infection totally, food is a total non issue. If you have a child with PWS, you know how remarkable this phrase is.  Ayden Jane has turned down food in order to go play.  I will give Saturday as an example of how extreme I am talking.  We had breakfast around 8:30.  At 10:30 we headed out of town to Mckenna's soccer tournament 3 hours away.  AJ asked if I would pack a snack of nuts for her.  I figured she would eat them as soon as we got in the car because that is typical.  Bringing snacks can be tricky.  Often I need to bring them because I need to be sure there is something she can eat, but when she knows I have them and gets bored, she wants to eat them all.  She told me just to put them in the cooler in the back because she didn't need them.  Jaw drop.

About 1:30 we stopped about a mile from the field to potty and get some water.  Ayden Jane has still not touched her snack!  I saw bananas and decided to see what she would do.  AJ LOVES bananas and they are a big treat.  We got one and she offered me half.  I was again stunned.  We got to the field and with no lunch and only a 1/2 of a banana since 8:30 she asked if she could go play on the playground before she had her snack!!! She did finally eat her small snack of nuts at 2:30.

We had dinner about 5:30 and there was no whining or concern or asking for food.  Nothing after supper and no mention of it.  Yep. That's the way its been for about a week now.

Times like these I just wish I could see inside of that little body.  Such a dramatic difference in just a couple weeks.  What is working so smoothly now that wasn't before??  How do I keep it going??  How could it help other kids with PWS???

Wednesday, October 3, 2012

Fine Motor

I know that to the average person this does not look like much.  I have to say, however, to me it is the most beautiful picture EVER.  Ayden Jane drew it and as she drew she explained what she was drawing to me.  I took the picture sideways so you have to tilt your head so that the straight line is the bottom.

"This is the mouth, these are eyes, this is the nose, this is a forehead, this is the head, this is the hair and these are legs."

I can honestly say that this is Ayden Jane very first attempt to truly draw something.  Most of the time she just scribbles and moves on.  She just doesn't have the patience to take her time with drawing.  So much to think about holding the marker:  the right grip, how hard to push... much easier to just grab and scribble.

I chatted with her OT today and she says she has seen a big improvement in the past couple of weeks.  When asked if she wanted to write her name on whatever they did in OT apparently, for the first time, Ayden Jane responded positively and just asked for help.  Now, I will never know how much it is because of the glasses or just plain feeling better or getting back to school... but I honestly just don't care!!  Writing has been her biggest weakness so to have it coming in any form makes me happy.

Tuesday, October 2, 2012

Happy Birthday AJ !!

Wow, Ayden Jane is officially 5!

We did not do the invite your class birthday party thing...  Honestly, we haven't for any of our kids.  We tend to be more of a family celebration sort of family.  Celebrating Ayden Jane's birthday has been a several day affair this time around.

Kayla came home from Clemson which was a huge present for Ayden Jane.  Thank you to Kayla's friend Ali who provided Kayla with transportation and Ayden Jane with an extra special birthday.

First up, Ayden Jane blowing out the candles.  We had lots of chances for this picture because apparently, we need to work on her blowing skills. LOL.

So what are they?  Strawberries and bananas dipped in dark chocolate.  She loves to make 'em and loves to eat 'em.  No interest in cake, these are her favorite things hands down!


Next up we have a day of swimming and paddle boarding in the ocean!!  It was cold, but they had a great time anyway.

Yep, that's Ayden Jane getting a ride out in the 'deep deep' on the paddle board.  She thought it was the coolest thing ever.

This is Ayden Jane playing with one of her presents.  I think it is the first thing she has drawn on that she actually likes to draw on!  More on that coming up!