Friday, November 29, 2013

Swimming Part 2

Ayden Jane finally had her swimming lesson with Coach R.  He was awesome with her.  Ayden Jane had literally been counting down the days (twice) to get to go.  She did all he asked, worked really hard and loved it.  By the end of the one lesson she was swimming freestyle so much better!  It will take some doing, but I am going to try to get her in the pool with Coach R once a week until Christmas rolls around.

So, why am I so excited about swimming?  First of all, Ayden Jane is genuinely good at it.  I mean good for a typical kiddo.  It is so awesome to watch her do something that comes easily and naturally for her.  Maybe it sounds awful, but it is honestly great to watch her excel over other, typical kids.  Trust me, we have plenty of time to 'build character' in other activities.  When she is in the water, it's like the playing field evens out and that hard working nature makes her excel, not just keep up.

Secondly, it has always seemed to calm her.  I don't mean makes her tired, not that sort of calm.  It sort of quiets her sensory system and makes her able to focus tremendously well.  For example, today she spent time playing with play doh, working on writing letters and 'painting' (with water).  Things I love for her to do as fine motor is her weakness, but she struggles with doing for extended periods.  She followed that up by reading 10 books!  Yes, 10!  I was amazed at how sharp her reading was (well for the first 5 or 6).

As a bonus, the rigorous exercise helps 'clean out her pipes' and she is oddly less hungry when she has had a good hard swim.  So, today she had breakfast, a snack before swimming around lunchtime, some green bean casserole and mini almond butter muffin after swimming followed by a long walk with the dogs. Now it is bed time and all she wanted was a few apple slices instead of supper.

No doubt I am calling Coach R Monday and getting things nailed down to get this kid swimming at least once a week!

Tuesday, November 26, 2013

Thanksgiving Kindergarten Style

Today was the Kindergarten Thanksgiving feast.  For some kiddo's with PWS (and their parents) holiday parties at school can be stressful.  Okay, any parties at school can be stressful!  Just the idea that there are lots of foods and well meaning adults doling out all sorts of treats and drinks...  Yikes!
Honestly, we have been blessed in that Ayden Jane handles these things really well, the parents we have had in her preschool are amazing and her schools go way above and beyond  Here is how the 'feast' went this year.  Each Kindergarten class was responsible for 1 item.  There are 5 Kindergarten classes and the kids rotated through the rooms to get something from each room.  I texted Ayden Jane's teacher the Friday before to get a clearer picture ... She responded that she had already put a sheet in AJ's backpack that listed each room and what they would be giving the children so I could figure out what Ayden Jane would eat and what she wouldn't.  Sweet!
The 5 things were: turkey sandwich (1/2), carrots and ranch, grapes, ham roll-up, trail mix and a pumpkin muffin.  I sent in a small nut snack for the trail mix and a grain free almond muffin for the muffin and Ayden Jane was good with the rest!  (of course she did not eat the bread and saved it for the dogs....)  We also talked about how we would not need an afterschool snack since this was so late in the day.  She was totally cool with that.  It all worked out great!!  She was one cute Indian!
The only disappointment this week was that the swim coach called and had to postpone her swim lesson until Friday.  (His son was sick)  Ayden Jane took it well but now has me counting down the days until Friday!  Hopefully the return of the big kids for Thanksgiving Holiday will help distract her!

Saturday, November 23, 2013


It is winter...  It gets dark too soon...  It is cold... (well, cold for us)

So what is the answer to the lack of opportunity to exercise?  Swimming.  Well, indoor swimming.

I am taking Ayden Jane to the local health club which has a new aquatics director.  I heard he is good so I called to chat with him about options for Ayden Jane.  It is hard to know when to say anything about Ayden Jane's challenges because I want them to treat/push her like they would any kiddo.  I also don't want to scare them off! 

Basically, I told him she has a rare genetic disorder that effects her motor planning and muscle tone.  It means that it will take her a little longer to lay the new motor pathway and that she may not be able to just watch and magically make it happen.  She needs things broken down and help figuring out which muscles to use sometimes.  On the flipside, she will work at it until she gets it!

He was not deterred in the least and thought she sounded awesome.  We decided to go with a one on one lesson to give him a chance to see where she fits.  He has a group that is likely a little behind her in skills and there is a swim team.  (the ultimate goal)  If she is close to having what she needs to join the swim team I will just have him do a few lessons with her until she is ready.

Ayden Jane is THRILLED!!  She told me tonight she wanted to go to bed so that she could wake up tomorrow and only have one more day until she got to swim.

Can't wait until Monday! 

Wednesday, November 20, 2013


There is a boldness and confidence about Ayden Jane.  Sometimes I am in awe of how she approaches everything just knowing that she can do it.  She totally believes in herself and almost doesn't even see the things she can't do.

She played soccer this fall.  Well, she was on a soccer team this fall.  She had her moments where she was right in there but by and large she just runs up and down the field... She does not kick well and timing running and kicking?  Nope.  In fact, she can't even make up her mind which foot to kick with!  So, if you ask her about soccer she will tell you she is awesome.  She will try her best if you ask her to do something and then be proud of her accomplishment.

She is the same with reading.  She is doing a great job and is a pretty average reader.  Ask her and she will tell you that she reads very well and in fact can read anything.  ha.  She recognizes that other kids are better at reading and some not, but she doesn't really care what other kids can do.  It is awesome.

Last night we were at Mckenna's cross country banquet.  The coaches talked about the effort put in and the improvements kids made.  They talked about how, through running, the kids found confidence and a belief in themselves.  Ayden Jane listened intently and asked me how long they had to run fast.  I said about 20 minutes and Ayden Jane grinned.  I know I can do that when I get as big as Mckenna.  I am going to run cross country mom.  Yep.  Swagger.

The flipside is Mckenna.  She is beautiful, athletic, smart, musical, artistic and a middle school kiddo.  She lacks swagger.  She approaches things unsure of whether or not she can do them.  She is so talented she should have loads of swagger, but it is just not there.  She ran cross country this fall and when she started she honestly could not complete a mile running.  She worked at it (holding back of course) and was thrilled when she finished her first race.  Her time?  30 min....  As the season went on she continued to improve but still always held back.  In her final race she was chatting and making a friend. lol.  We are so proud of her season ending time of 25:34 and look forward to her gaining a bit of swagger over the coming years.

Mckenna is an awesome kid and I often wonder if some of her lack of confidence comes from Ayden Jane.  Maybe it comes from the attention she did not get when she was little because we had to pour time into Ayden Jane.  Maybe realizing that there are things that mom's and dad's can't fix was too much for her.  Maybe having two amazing older siblings she doesn't think she can live up to plays in as well.  Who knows.  What I do know is that I see the beginnings of swagger.  Just glimpses here and there and I am hoping and praying for Mckenna to attack life with the same confidence and swagger that Ayden Jane does.  Heck, Mckenna has all the talent to back it up! 

Monday, November 18, 2013

The Balance

Sometimes I wish that there was someone or some way we could see inside Ayden Jane, all the way down to the cellular level, and figure out what makes her function so well.  I know it sounds strange and a bit like wanting to do a science experiment on your own kiddo, but I really wish I knew what is working so well in her that sort of over rides the PWS.

Basically, when she has the right diet, stays healthy and has the necessary dietary supplements she presents as a typical Kindergartener.  When she gets ill (especially with a bacterial infection) pieces of PWS pop up.  Things like food interest/seeking.  When we let the b-12 wash out her preschool teachers were really worried about her and it was so bad they had to remove her from the classroom.  When she ate a heavy carb load it was ugly.  Her behavior was awful, her speech was awful, she became lethargic and fell asleep waking up with a nasty headache...

I know most kids with PWS don't respond so dramatically to little changes in supplements or diet or even illness.  It is like I can watch her go from a kid with PWS to a typical kiddo by changing what goes in her. 

This was all brought to mind this past weekend when Ayden Jane picked up a little virus.  Her body still responds to viral infection without too much trouble but her speech was slow, her right eye (strabismus) started to turn in again and she slept a ton.  She is feeling much better and has returned to her typical self.

The flipside in this is the ever present feeling that although she is doing so great, it could all fall apart at any moment.  Such a precarious balance and the only way to keep it going is a bit of trial and error.  Yep, takes me back to wanting to be able to see inside those cells!

Tuesday, November 12, 2013

Jackets - Not So Fun

So Ayden Jane is cruising along these days. It is easy to almost forget that she has added issues to deal with.  Then little things like this pop up.

The weather is changing.  Like it or not it is getting colder and Ayden Jane is going to have to cave on her, "no winter clothes until Christmas" mantra.  Today when she got dressed in her tiny shorts and little short sleeve shirt, I decided it was time to take a coat to school.  I know, what a horrible mother to make her take a jacket!  Yep. It caused a meltdown.  After a few minutes in her room to get herself under control she decided it was okay to take it but she was not going to wear it unless her teachers said she had to.  Deal.  She still cried a bit off and on and was totally stressed by the whole thing but... I just hung tough.

On the way to school Ayden Jane asked me if I would walk her in since she had a jacket.  Umm, sure but aren't you the same child that would not even let me walk you in the first day of school?  We parked and walked in.  Yea, she cried a bit but I'm sure she is not the first kindergarten kiddo to shed a few tears at school. 

When we got to her classroom she went to her hook and said, "see, I don't think I can hang up everything with a coat and I have to have my bags!"  (spoken with the voice of a very stressed 6 yr old)  Ahhh, the root of the problem.  She has a system of knowing where everything goes and she just couldn't picture where the jacket would fit in that picture.  I just showed her that her lunch box could fit in her cubby and then there was plenty of room on her hook for her jacket.  She was instantly happy and had a great day.  Sheesh! 

I did mention to her teacher that she hates coats and does not get cold easily so I am not concerned if she does not wear it often.  She was glad to know that.  I told her that I knew times would come when they would tell students they had to have a coat to go outside and I did not want her to have to deal with the fallout from AJ having no coat and having to stay in!  Also, I told her that AJ is not so good at getting her jacket on and gets upset by that fact.  (Maybe if she wore one more that 3 times a year she would get better at it!)

I guess it is easy to forget that clothes don't always feel good, having extra things to keep up with is stressful and adding a bit of motor planning and frustration (putting on a jacket) to the joy of going outside is not fun.   We will see how tomorrow morning goes :)

Thursday, November 7, 2013


About a month ago Ayden Jane lost her glasses.  I was sure they were at the house, just had no clue where!  We found them a few days later in the backyard ... broken.  I mentioned getting them fixed and she protested that there were so many lines in them she can't see through them anyway.

It was time to head back to the eye doctor anyway so I just let her go without them.  Today we had the eye exam.  Her eyes are actually getting better!  Her prescription previously was for 2.5 in each eye and now it is for 2.0.  (eye don't speak eye but improvement is improvement).  Also, I mentioned that her right eye that used to turn in occasionally no longer seems to.  She has not had her glasses for about 3 weeks and she has done great.  Doc said yep, that all the way around her eyes were doing better.

It was pretty cool that now she responds so well that they could ask her to name letters instead of pictures and he lined up some different things for her to look through and he could not just test, but ask her which way it looks better to her.

She is doing really well with reading and her writing is... improving, but still needs a lot of help.  I am really hoping that the glasses help with that.

In a week or so we will have new purple and blue glasses! 

Wednesday, November 6, 2013

Look, No Training Wheels!

A while back Ayden Jane asked to have her training wheels off so she could learn to ride her bike on two wheels.  It must have been Sept. because she was determined she would learn when she turned six.  We worked on it a couple of days but she seemed really far from making it happen and was just nervous enough that she would not allow us to help her.  Ummmm.  In case your wondering, it is hard to teach yourself to ride a bike with zero help getting going.
After the few days the bike was left in the garage, training wheelless and lonely. 
Renewed interest in learning to ride came as the big trucks rolled in and paved our road!!  Seriously, it was like a holiday celebration here.  I texted Kayla and Noah because it was a 15 year dream come true!!!  They had hoped their whole childhood that the road would be paved and roller blading, hockey, skate boarding.... would all be awesome on our street.  I am thinking Christmas this year will include them reliving their childhood dream skating with Ayden Jane :)
So, today the weather was good, the road was paved ... It was time to give it another go.  In about 20 minutes she was riding solo.  (sort of)  Jen got her started and ran with her in case she needed to catch her.  It was wobbly but she did it!  One more thing that was supposed to be too hard ... ha!  Too hard?  It only took 20 min.  (yea, I know it will take a lot longer to perfect, but I am claiming this victory now)

Tuesday, November 5, 2013


I have a confession.  I am terrible at having Ayden Jane do her homework.  In fact, I really don't even like that we have homework in Kindergarten.  That's a big confession for a teacher!

Ayden Jane's teacher is great.  Actually, even her homework system is great.  Ayden Jane has 'required' homework on Wednesdays.  The rest of the days there are assignments on a calendar for the month.  The ideas are simple and they are just small things we can do to reinforce what the kids are learning in class.  (okay, fine.  I have no reason to complain about homework)

I have not been great about creating homework time and doing the smaller activities with Ayden Jane.  I decided it was time to step up as mom.  So, tonight's assignment was to write 10 sight words.  Hello?  I didn't even know that Ayden Jane knew what a sight word is!

I offered to help since I was sure that she could not even name 10 sight words let alone begin to spell them!  You would think I would learn.  First of all, Ayden Jane does not need help, just ask her, she will tell you she already knows everything :) 

So how did she do?  If you looked at the paper you would have no idea what she knows, but watching her do it and listening to her sound out the words as she writes them....  Holy cow she knows so much more than I thought!!  She thought of and spelled 8 sight words on her own.  Sure there were mistakes, but only the kind that some from the English language being so complicated.

Let's see, she knew exactly what a sight word was.  She could name them.  She knew how to spell most of them!  You would think by now I would stop underestimating the kid.  I feel like Marlin in finding Nemo.  "you think you can do these things Ayden Jane, but you can't"  Apparently, she can.

Saturday, November 2, 2013

Soccer Adventures

Our day started with a trip to soccer fields in Charleston for Mckenna's game.  It rained last night and I envisioned Ayden Jane having little to do and being wet and miserable.  At first I did not remember this particular field so I did not think there was a playground.  What a great surprise when we arrived and the grass was not so wet and there was a great little playground!  Ayden Jane played and played during the 45 min. warm up and pretty much the entire game!  It was great.

On the way home I mentioned to them that Noah had his last home game today as well.  Yep, they both wanted to make the trip to go see Noah.  After the hour or so back home, a shower for Mckenna and Ayden Jane and some school work completed by me it was off to see Noah.  (just over 2 hour drive)  The girls were great.  Ayden Jane slept about half way there and was seriously wound up at the game!  She wrestled on top of me during his warm ups and entertained herself during the first half.  Then the big surprises arrived!  Kayla and Allie made the trip from Clemson!

The game was a blow out, Noah did not play at all the second half so Kayla still has not seen him play college soccer,  but Ayden Jane was on a roll entertaining everyone!  Mckenna kept giving her crazy 'missions' which included singing and animals sounds and general silliness.  (Mckenna will be an amazing therapist of some kind one day) 

After the game Noah was so happy to see his sisters.  So fun to see them all enjoy being together.  We took Noah out to eat and just hung out a while. 

Such a fun day.  And to think, when Ayden Jane was tiny and Noah was still playing club soccer, we wondered if traveling and eating out would ever be possible again without much stress.  I can officially say, PWS does not impact our traveling soccer adventures (well, other than we try not to stop as often)

Friday, November 1, 2013

Happy Halloween

Yes, a Happy Halloween post without pictures.  I will post one when I get one.

I have to say that even before PWS Halloween was, well, not my favorite holiday.  Let's see, I dislike all things creepy and scary.  I am a total wimp with scary movies and hate all the previews that come out this time of year.  As a mom all that candy is ... not optimal and when I was teaching, oi! 

Now add on top of that Prader Willi Syndrome.  I really thought early on it was going to be a nightmare!  I envisioned candy at every turn and Ayden Jane spending her day sneaking food and me having to stay one step ahead of her.

The day before Halloween Ayden Jane's teacher read Gordy and the Magic Diet to the class.  It ties in with Halloween and the holidays and is a great story for a kid on a no junk diet.  The teacher really liked it and said that she thinks it helped make sense for everyone why Ayden Jane eats the way she does. 

So, how was Halloween?  A breeze.  Ayden Jane loved her day at school.  She came home and informed me that they did not do any school work all day long.  All they did was play!  She wore a dalmation costume that was comfortable enough to make it though the day.  I had not done any planning ahead with the party moms and it was the first party in Kindergarten.  I slipped out of work and arrived just after food was passed out.  Apparently when the mom who had never met AJ attempted to give her a chocolate covered something on a stick, Ayden Jane told her there was no way her mom would say yes to that.  Lol.  Then she told her she can't eat sugar.... Apparently she was impressively convincing.  All in all Ayden Jane did great and I have just a few things to tweak for parties in Kindergarten and all will be well.

The big night came and Ayden Jane was amazing.  She trick or treated with Gary and Mckenna and Mckennas clan of friends.  She didn't wear out (guess that's the 5K training) and never even asked for a piece of candy.  At the end of the night she fell sound asleep on the sofa after putting her candy out for the great pumpkin.  We packed up the candy and replaced it with a toy and Halloween was officially over.  Whew!!

A win all around.  A happy worn out Ayden Jane and candy to 'donate' to our starving college students :)