Saturday, March 31, 2012

No Thank You, She Doesn't Eat Cookies

We were on the soccer fields today.  I know, shocking!  While we were there, another little girl about Ayden Jane's age came over to play with her.  They were very cute playing with some block sort of things that we brought.  After a while, the little girl went over to her families blanket and invited Ayden Jane to tag along.  No worries...  Then the little girl's parents started to give out snacks to their kids and offered Ayden Jane a cookie. Ayden Jane was great and tried to say no but mostly just came my way.  The dad asked me if AJ could have a cookie with them and of course, I answered, "oh, no thank you but she can't have cookies."

It seemed so 'normal' as it came out... until the look on his face.  I began to realize how not normal a simple sentence like that must sound to the average person. It is typical in our world now...  It doesn't even seem far fetched anymore to think that Ayden Jane hasn't had a cookie.  In that moment, I wasn't sure what to do.  This man who I will likely never see again, is thinking I am a lunatic Mom who doesn't even allow her kid a cookie?  What sort of parent doesn't allow her kid a cookie?  Should I tell him why?  Ayden Jane has had so much fun playing with his daughter and has totally held her own.  Today, she was just a typical little sibling on the side line.

A bit later, Ayden Jane was talking to another parent and the topic came to birthdays... It is a common topic with Ayden Jane as she, being the youngest, is in a very large hurry to grow up and catch up with her siblings.  The mom asked AJ what kind of birthday cake she likes for her birthday... Ayden Jane was silent for the first time in hours. LOL.  I handled that one much better just saying, remember Ayden Jane, we didn't have birthday cake, but Daddy made a special treat with you.  She got excited and jumped right back into the conversation and told the lady all about making dark chocolate covered strawberries and oranges with her Daddy.

I guess it is not really any different than parents who have their kids on gluten free or ketogenic or other special diets.  I just need to figure out a good short version of why Ayden Jane is on a special diet.  I struggle with the short version thing.  PWS just doesn't really have a short version!

Friday, March 30, 2012

Busy AJ

So, tonight Ayden Jane and I rode bikes to the park.  She played (which is code for climbed) for a bit but then we rode back home because it was getting dark.  That was after riding scooters and the power wing, swinging in the back yard and trampolining.  It was a lot of activity I thought!  It has been a crazy week of up late soccer games and playgrounds so we were just supposed to be laying low!

Once it was dark outside, Ayden Jane asked to play inside for a bit and I figured it may settle her down and get her more in the mood for sleep.  I wandered back to my bedroom to, surprise surprise, fold some clothes.  Ayden Jane came in a few minutes later, "Mom, come see.  I remember how to do a hand stand."  Yea, so much for settling down...  She wanted me to do one too... notice there is no picture:)  She kept doing it over and over and asking me to measure how high up her feet were!  I have no idea where she gets this stuff!

Monday, March 26, 2012

Language Confidence

So, Ayden Jane has been on quite the language spurt lately.  I think it really comes from confidence.  She is speaking up to everyone, every where!  She struck up a conversation the other day at the soccer field with a husband and wife who were there to watch an up coming game.  The boy they were watching is on Mckenna's team and so during warm ups the were entertained by little miss AJ.

I find if I put some distance between myself and Ayden Jane during her conversations that she speaks up and does not look at me to answer or explain...  So, I stepped away.  After about 15 min. or so I headed back over.  This family knows nothing of Ayden Jane's history... so it was entertaining to hear their comments afterwards.

Things like, she really thinks before she says things.  (processing delay)  She speaks slowly and deliberately.  (years of speech therapy and articulation drilling)  She is so focused as she engages you in conversation (can not multi task)  She is very deep and persistent in her questioning.  (borderline socially inappropriate questions)

Of course, I just enjoyed the minutes of my little girl holding her own and was so proud of her for all that she has overcome speech wise to have a long conversation on the sideline.  If they only knew the miracle they were a part of!  Somehow, telling them would have just spoiled it all.  They very much enjoyed the overly inquisitive, enchanting little girl...

Thursday, March 22, 2012

Time to Listen

Ayden Jane has a lot to say.  It does not come out quickly, but if you are patient and listen and don't try to finish her sentences...  She will get comfortable and on quite a roll.  There are the rare occasions when adults are just that great with little kids that they get it.  The slow down and enter the world of Ayden Jane.

The other night at the soccer field was one of those occasions.  Coach R has been a friend of our family for a long time.  He coached Noah for many years when he was young (8-13?), Kayla for a year or so and Mckenna for 2 years.  He is a great person as well as coach.  He was there and concerned for our family from the start with Ayden Jane.

Coach R will often stop to try and get Ayden Jane to give him a high 5 or chat with him as he is scurrying past... It doesn't really work as it takes time for Ayden Jane to get rolling.  The other night we stayed a bit late and as all the kids were done and I started to chat with R, Ayden Jane started to chime in.  R immediately dropped our conversation and popped down to AJ's level.  She started to get really going and he patiently waited for her to get long complicated thoughts out.  By the end of it all, Ayden Jane had teased him, backed him into a corner in conversation and interrogated him on the ins and outs of coaching.

After they were done, R told me how great her vocabulary and verbal skills are and how amazing she is.  He remembers the beginning and saw the differences between AJ and his son who is just a few months younger.  He has seen her struggle to do all the things she now does with ease.  I know that many families of kids with PWS do not get this sort of feed back and I don't mean because she is nearly 'typical'.  I mean, the recognition from others who don't live in our world of special needs that our kids are amazing.  Not pity for how hard their lives are, or how hard they have to work.  Not platitudes of how hard it must be ... Not self conscious, awkward conversation where they are trying, (which is appreciated) but totally uncomfortable.  Honest, cheering them along right beside us, proud of their accomplishments, eye twinkling enjoyment of our kids.

It all starts with time.  Slowing down and giving them time to show who they are.  Taking time to enjoy where they take us.  Following them into their little world for a glimpse.  Accepting them and marveling in their unique little persons.

Thanks to all of you who slow down and take time to get to know kids who just need someone to give them some time.

Tuesday, March 20, 2012

Peaks and Valleys

Ayden Jane, emotionally speaking, is a landscape of peaks and valleys. No flat land in sight.  That has sort of been our motto.  It takes a while to accept this fact and relax knowing that the valleys will turn into peaks remarkably quickly.  The real key is learning that the harder I try to force the valleys to become peaks, often the deeper I make the valleys!

It is so fun how excited she gets about things.  She quickly declares things her favorite and jumps up and down and gives out big thank you's and squeezes...  Little things make her day and it is so much fun to watch the excitement in every part of her body.

Of course, for every peak there is a valley...  Quick to pour out giant crocodile tears, heart broken.  Quick to panic and quick to get angry.  The hard part is not to get angry when she is irrationally crying over something pointless!  Or even lecture or discuss or reason or....  It just doesn't work.  Timing is everything and giving her enough space to begin to settle and then help her recover when she is ready is more of an art than a science.

Trying to remember to revel in the peaks and not take the valleys to seriously.

Monday, March 19, 2012

Car Riding

So, Ayden Jane has spent a lot of time in the car the past 2 weekends.  One thing we know for sure is that she is different from my other kids!  First of all, she will NOT watch a movie.  I was so excited for about 20 min. when she was watching a movie for the first time and I thought it might stick.  I said I was excited for 20 min. because that's how long it lasted.

I know I should be happy that she is busy and prefers to be creative and play with toys... than to veg to a movie, but geez!  Would one hour be too much to ask?

She fights sleep.  On the trip to Richmond, we arrived at 10.  Starting at about 7:30 which is when I can usually start to wind her down for bed if she hasn't napped, she began fighting sleep.  How do you fight sleep in a car you ask?  T A L K.  When you run out of topics, just ask the same questions you already asked, just be sure not to stop talking...  Yep, over 2 hours worth.

On the trip to Columbia, we left at 5 in the morning.  Ayden Jane usually sleeps until 7 and I have often done trips where we just pluck kids out of bed in the dark and they just go right back to sleep in the car.  Ummm not so much for Ayden Jane.  I felt bad for Mckenna who had 2 soccer games to play and was sort of counting on a couple extra hours of car ride sleep.

Sometimes I think a little day time sleepiness could be used to my advantage!

Sunday, March 18, 2012

Food Easy?

Last weekend we traveled to Richmond.  This weekend it was Columbia (SC).  Mckenna had a tournament there so we were off on a 'soccer adventure.'

Ayden Jane just impressed me this weekend with a food 'maturity.'  I know that sounds strange to say, but she is just managing her food choices, requests... so well.  I never would have thought it would be so doable!  (Now as for car riding?  I'll get to that in a minute)  After Saturday's games, Mckenna really wanted to go to Fazzoli's.  It's an Italian food chain and basically filled with pasta, bread sticks...  I decided to go for it.  We went in and I got grilled chicken for Ayden Jane and she was thrilled with the big treat of dipping it in marinara sauce!  She asked about the bread sticks once, but really just to know what they are.  When she was finished I asked if she was still hungry and wanted a meatball.  She said, "not really mom.  Can I have a piece of gum?"

Another example was at the soccer fields.  Some friends (Jen our PT and her family) were at Mckenna's last game.  They had a big bag of popcorn they were all sharing.  We do let AJ eat popcorn even though I know it is technically a grain....  Ayden Jane pulled me aside and asked me if she could ask for some popcorn.  She knew to ask me first!

Lastly, she was getting hungry at one of the games.  She asked if she could have some almonds.  I told her, let's wait because we will take Mckenna and go eat soon.  With out any fuss, she just agreed.  Well, after some discussion of where we might go to eat anyway.

It was just easy.  I have come to thoroughly enjoy easy.

Thursday, March 15, 2012

IEP and OT

Ah, the 'letters' of special needs families.  We had Ayden Jane's IEP yesterday.  It was pretty uneventful as all it deals with is speech services since I choose to use a private setting for preschool.  I did request OT for next year, however.  What does that mean?  It means a few forms and then Ayden Jane will be evaluated for Occupational Therapy services.  Basically, the difference between OT and PT is that OT is working primarily on fine motor skills such as handwriting, cutting....

Let's just say I see handwriting as a HUGE battle on the horizon.  We have been working on it off and on for a while already.  Jen has spent some PT time on it as well and with improvement.  Problem is, Jen would basically have to give up all the great things she does for Ayden Jane's gross motor skills (big muscles) in order to work on things like writing.  Just not gonna work.

Mrs. J, Ayden Jane's preschool teacher and I chatted about it the other day.  She told me that there were a few others that could still not write their names yet either.  Of course, they were almost a year younger than AJ or just had no interest.  What screams out at me is that Ayden Jane is totally interested, is trying really hard, has had time spent with a skilled therapist... and still cannot make any of the letters independently.  AJ was actually crying that she tries so hard but can't do it and all her friends can....  Here we go.

Being 'typical' in so many ways is awesome!  Ayden Jane knows most of her letters, many of the sounds, knows the shape of all the letters in her name hands down... she just can not make her hands cooperate.  That is frustrating enough, but when you first begin to realize that things are different for you than others...  It is hard that she is at a point where she is beginning to see there are differences, you know, not a totally level playing field.  Problem is she is not really old enough to comprehend why, let alone process how to deal with it.

Tuesday, March 13, 2012

We're Back

It has been a long time.  I hate when I don't update for a while because then I have so many things running together in my head I have no clue what to write.  So hang on cause I have no idea where this is going.

First up, our trip to Richmond.  Noah, AJ and I set off on the trip with excitement for Noah and some awesome soccer ahead and total excitement to hang with the Shenk family.  Noah has played travel soccer for many years, but recently transferred to a team that is a step up.  He was off to his first tournament with his new team and playing at a higher level than he ever had.  He did great!  We even had an email waiting for us this morning from a random college coach who saw him at the tournament.  He had a great time playing the sport that makes him happy.  Nothing is better as a parent than to watch your kid thoroughly enjoy doing what they love to do.  Not to mention doing it excellently at a top level!  Ayden Jane is his biggest fan and hung in there digging in the dirt and collecting rocks during his games.  I was glad to find the dirt and rocks because the only other thing AJ wanted to do while he played was eat and nearly 2 hours of eating is not really an option!

The S family were perfect hosts.  The boys provided entertainment for all, especially Ayden Jane.  I have been hearing about C, D and E ever since.  It was so great to be where no one looked at me weird when I fed AJ crazy things or asked where the sharps container was!  Therapies just came up in conversation as naturally as T-ball or other activities.  It was fun to see all the kids together just being a bunch of kids.  No one worried about any one else's quirks... just enjoying the day.  Sometimes I wish adults could be as accepting as little kids.

Ayden Jane does seem to have some ill effects from travel.  She started to take on fluid and has been wetting through pull ups since our last night there. (and the car seat on the way home)  She is looking a bit puffy again, but so far no behavior issues seem present.  I am not sure what to make of it other than the whole don't mess with my routine thing!  We'll see how it goes.

Saturday, March 3, 2012


Ayden Jane has been healthy for 2 full weeks!  I have fabulous pictures of her when she was a mess with sinus infection.  Two weeks into the antibiotics working well and then at 3 weeks.  They are astounding!!!  Sorry, not gonna post 'em though as they are underwear only pictures.  I did share them with her doctors and all are amazed that her entire body composition could change so dramatically in just 3 weeks.

It is like Ayden Jane is back.  I love this kid!

We continue to make rest mandatory, but are allowing her to go wide open during waking hours.  She is getting her strength and endurance back which is fun to see.  She will still have to work hard (code for play hard) to get her lean muscle back to where it was and get her body fat back to optimal, but barring any further illness it will come in time.  She loves to play hard and starts every day asking what we can do that's fun.  To her fun is active and busy and go, go, go...  Plenty of that in this house!

So what have I learned from this winter?  Aside from the medical stuff... I realize that there will always be times where I feel isolated as the parent of a special needs child.  I mean, yea, AJ had an upper respiratory infection... so?  Kids get sick, it's a part of growing up...  Ayden Jane has gotten sick in the past a kicked it no problem.  Then came this one.  So where do you go to figure out the answers?  We are blessed with great Drs. who really care about Ayden Jane and are willing to think about what is going on from all angles.  They listen to me and trust my observations and instincts about how she is really doing.  With their help we will hopefully handle any future infections better medically.

It is a far cry though, from chatting with your friends about how things are going.  You know, joking about the sleepless nights... that are almost looked back on as just a part of parenting.  The worry that she just won't be able to conquer it.  Not knowing exactly what we were dealing with because it just looks different in her.  Worrying about what the rampant inflammation was doing inside her and the cascade of things it was throwing off.  The 'real' world gets shut out and no one really understands our little world.

So glad to rejoin the outside world and hopefully I will catch up with what you've been doing all winter one day soon!