Call Me Maybe...

If you've been avoiding TV and radio lately, you might have escaped the "Call Me Maybe" phenomenon that has taken over the world.  This pop song is the subject of all kinds of youtube videos and Sadie discovered the song while doing a photo shoot with a couple of other girls her age.  Well, since that day, she's been obsessed with the song and sings the chorus over and over and over again.  Then Daddy, being the sweet man that he is, he found the US Swim team's version of the song and since we've been all about the Olympics, we had to watch it over and over and over again.

And because I'm nice or awful (depending on how tolerant you are of the song) here are a couple of video clips of the Sadie girl dancing and singing.  Yep, my baby is no longer a baby.  She now knows about pop music.  Life as we know it, has changed :-)

Cousins, Camp and Blueberries

 

We had our annual summer trip to camp.  It's become tradition that we hit camp for the Memorial Day fishing derby and then once more to pick blueberries.  This year the plan was to have a big family get together at camp because my aunt, uncle and cousins from Texas were going to be up.

After the usual chaos of trying to organize a family get together when family is all over the place and the nearest grocery store to camp is a good 30-40 min away.  Figuring out food is crazy, figuring out who's coming is crazy, and figuring out sleeping arrangements is also crazy but then, we're used to crazy.

I had my plan in place and tried to help with the crazy as much as I could.  We were going up for the weekend and then sending the kids off to NJ for the week.  That was the prize that kept me going.  There were a couple of bumps though.  Work went a little crazy for Andy and so he ended up staying behind so it was me and the monkeys on the road.

time for sittin' with Pappy

time for exploring

time for reading

time to just enjoy God's creation

Even with the chaos, we had a really good time.  There was some fishing, some soccer, some hackey sack, some boardgames and video games, some music, some hiking and of course, some blueberry picking.

My uncle, cousin, dad and brother all play guitar so needless to say there was a lot of music.  There's something magical about sitting around the fire at night and listening to guitars.  The s'mores aren't a bad addition either :-)

My uncle even took some time to teach Sadie about story telling chords.  I loved watching it and of course, she couldn't resist trying to take charge.

I'm looking forward to doing this again with everyone soon :-)

4th of July

We celebrated the 4th as usual this year with a trip out to Latrobe for the parade and then a cookout and swim at my mom's house.  It was ridiculously hot, even for July.  So hot, that we didn't make it through the whole parade.  Even with plenty of water and snacks, we watched until Aunt Jeannie went by in Goldilocks and then packed it up to head back for the pool.

Even at the parade, the boy had to have reading material :-)

Back at mom's we enjoyed tons of food- Italian roast beef, ham barbeque, fruit salad, taco salad, baked beans and buffalo chicken dip.  Plus desserts.  So much yummy food.


After eating, it was time for some swimming.

With Papa.

With Aunt Jeannie.

And on our own.

And Sadie got some special time as Grandmas worked on teaching her how to float.  It was fun to watch and reminded me of when she tried to teach me.

Thunder and storms chased us out of the pool and into the house.  Then it was time to head home.  Once again, we debated trying to watch the fireworks in Pittsburgh but the little girl passed out in the car so we went straight home.  Daddy carried the little girl up to bed and she didn't even stir.

Caleb got to enjoy some video games before he went off to bed.

Andy and I sat down to watch the fireworks on TV and then they started going off behind us.  Apparently we have a very generous neighbor who loves to put on his own display.  These are big fireworks- not just bottle rockets and sparklers.  We watched them last year and once again, they started up practically in our backyard.

I ran upstairs and grabbed Caleb.  We went out in the driveway and enjoyed the show.  Our neighbors invited us to sit up on their deck.  Caleb loved it.  Waving his hands with each explosion.  He was conducting the show.  And during breaks, he would look up in the sky and trying to find Polaris.  After several planetarium shows, he's really been enjoying the night sky and finding constellations.

It was a really nice day and once again, I had to sit back and just feel blessed.

catching up- Sadie's Ballet

This year, Sadie's end of semester performance was Peter and the Wolf.  The girls in her class got to pick between being a cat, a bird or a duck.  As you can see, our Sadie chose the cat.  She loved practicing pas-de-chat (the cat step) all around the house and she looked adorable in her little outfit.  I was a little worried that she might pretend to be shy (as she sometimes does when she's expected to perform) but she did beautifully!  We were so proud of her.

This is one of my favorite shots-  giving a Daddy a hug after her performance.

 She'll be taking the summer off but will get to go to Cinderella camp that is being offer by PBT.  The Pittsburgh ballet will be performing Cinderella next spring and have offered this special camp.  She's really excited for it but also reminds me that she doesn't want to wear a sticky bun for camp.

It's been so wonderful to watch her grow.  She really enjoys this and does so well.  I can't help but dream of watching her perform on stage someday.  We'll have to just wait and see what happens.

Here's a video clip of her work.  She's the little 'rina on the left.

another reader...

So as I mentioned before, the blog has been neglected.  Blame busy-ness with family, with photography, or we can even blame it on not knowing what to write.  Sometimes that's how it is.  I spend a lot of time reading blogs- blogs about family, blogs about photography, blogs about autism.  There are so many people writing so many things and writing them in a much better way than I can, with my hopeless grammatical errors and run-on sentences.  Sometimes, I feel like I'm just adding to the clutter that is the internet today and then I think about why I write and it's not really for the world but for my kids to someday see, for my family to understand us better, to be able to stay connected when we're spread out all over the place.  That's why I write and so here's another post that should have been done months ago...

We have another reader in the family.  The Sadie-girl has been reading for several months now and if I was a better mother, I would have the date that she first read me a story but I don't.  I'm horrible with dates and so we'll leave it at sometime within the past 6 months she started reading.  I'm pretty sure that her the first book she read was Mrs. Wishy-Washy.  It's a really cute story and she memorized it so quickly.  That was another part of the challenge in declaring her a reader.  She memorized things first and it wasn't until recently that she was really able to read without relying only on memorizing the story.

The little girl has been desperate to read since she was 2.  She would see big brother reading and wanted to do it so badly herself.  She would take her books and look at the pages, saying in the most pitiful, frustrated voice "I just can't read the words, Mommy.  I just can't do it."  and I would try to reassure her that brother couldn't read the words when he was 2 either.  As they each grew, she handled it well and brother was so nice, being willing to read to her most of the time.

We didn't push her to learn this.  We didn't really do anything with either of them except to do a lot of reading.  Seriously, A LOT of reading.  These kids could happily kill an entire afternoon sitting in their beds reading and re-reading books.  But then, their parents could also happily kill an entire afternoon laying in bed reading.  We're a family of readers.  That's what we do.  Case in point... this is how we spend our vacation at the beach, towels, umbrellas, beach chairs and plenty of books.

I'm thrilled that my kids love books.  I'm thrilled to watch Sadie going back through all of her old books and reading them to herself, rediscovering them for herself.  I can see that she feels empowered by it and I love that she feels that way.  Her favorite treat at Easter this year was getting her first chapter book.  Yep, we quickly jumped from beginning readers to chapter books.  It's still a little challenging to her but she has loved it and she has no problem making up a word if she gets stuck on one she doesn't know when she's reading.  At the library, she's been requesting the American Girl books.  She's been hoping for these (and for a doll) for about a year now.  We've said no doll until she can read the books.  Looks like this year might be the year for her first American Girl doll.  She seems to be leaning towards Kit but she's also enjoying the Felicity stories.  We'll have to wait and see what happens.

And so, here is a little video clip of Sadie reading Mrs. Wishy-washy for you all.  Enjoy!

sometimes

I wrote this awhile ago but never finished it.  I had to get it out in the heat of the moment.  I had to record it because I was feeling so much.  As I said, I didn't finish it.  I ran out of time.  Had to stop to start supper.  The moment passed.  The feelings dissipated.  We all moved on.  It's a memory now, replaced by other successes and other setbacks.  That seems to be how this goes.  2 steps forward, 1 step back.  And I know our struggles are so insignificant in the grand scheme of things but they're our struggles and we still feel the hurts that they cause.  I went back to it today.  Finished it a little more and felt that I had to share.  I always stress about writing about my boy's asperger's.  I stress about others reading what I've written as much as I stress about not sharing it.  But in the end, I share it and hope that maybe someone reads it and understands us and feels better because they've been in that place too.

**********************************************************************************


just because i want you to get it...
there was this party a while back.  all the boys in his class invited for hotdogs and fun.  it started out great.  he was excited to try a hotdog (hasn't eaten one since turning 1 yr but thanks to some surgery, now he can).  he took a big bite and declared it yummy.  i got tears in my eyes.  eating without gagging or vomiting hasn't happened since about 16 mos. 

he was playing with the boys.  light saber battles.  footballs being tossed around.  any 6 yr old's dream.  and then the water guns came out.  the first melt down after getting squirted.  we don't tolerate wet clothes especially after a week of just coping with school.  another boy yelling that my boy squirted him first.  i pull my boy aside and calm him down.  pointing out that he knows that's the rule in the swimming pool and it's no different here.  if you squirt, expect to be squirted back.  he loves it in the swimming pool.  he loves it in his bathing suit (clothes that are designated for getting wet) he sits by himself for a while.  he's still unhappy.  a wet shirt, nothing that he wants to drink, not being allowed to go wander inside and find a book. 

he perks up and i think he's going to recover.  he goes back to play for a little bit.  his shirt is already dry.  he's happy again.  then he's accidentally squirted.  we're done.  the crying begins.  a big meltdown.  it's just been too much for him.  he's really having trouble calming down.  the boys are watching.  the parents are watching (i don't really know any of them). 

i'm defeated.  i'm afraid he's going to be labeled as a baby for being upset over getting squirted when all the other boys were loving it. it hits me again that he's different.  it's not bad to be different but in this case, it's a lot more difficult.  as someone who always wanted to blend in to the point of being invisible, it's tough having a child that can really stand out at times- and come to think of it, i have 2 that stand out in very different ways.  my heart hurts for my boy because i know he wants to be a part of it all.  i also know that he's craving that quiet space to himself with his book, shutting out the world around him and going into Harry's world.

i know there will be successes.  there will be so many successes.  my boy will do great things.  but the setbacks still hurt especially when they're right after a big success.

i write this because i don't want pity.  i don't want to even be told that everything is fine and will be fine and there will be other parties and other successes.  i know that.  i don't doubt that in the least.  i just want someone to get what dealing with asperger's is.  what dealing with an autism spectrum disorder is.  i want to hear, "yeah, we've been there too and sometimes it just sucks"  because sometimes, when you're having to leave the party when the other kids are still having fun... it really sucks.

Video Clip Blast

So my little point and shoot camera, a Canon Powershot A590, is my trusty video recorder and so that's what I pull out for our family videos.  Back when we were first expecting, one of the first things we purchased was a little video camera.  Sadly, it wasn't our best decision.  While I'm quite comfortable snapping away still images, I've never gotten into video recording.  It could be the fact that I hate the sound of my voice when I take movies or it could be that it was also my stepdad (Papa Joe) or my brother taking movies when we were growing up so I was never comfortable picking up the video camera.  Anyways, our little video camera has been hardly touched over the years and I have become much more comfortable taking little video clips with my still camera.  And of course, a 5 min clip can more than capture a moment.  We don't really need to sit there watching a half hour of the kids riding their bikes in a circle even if they are the most amazing kids in the world ;-)

Today was Sadie's ballet recital.  Well, not exactly.  They don't do recitals but instead invite parents to watch their class on the last day and do a little performance.  This meant busting out my trusty P&S to hopefully capture a few moments of my little ballerina wiggling and giggling and do everything un-ballerina-like in addition to her barre exercises.

This also meant cleaning off the memory card afterwards and posting all the video clips that I've captured but failed to post anywhere.

So here we are.  Several video clips taken over the past few months.  Enjoy all of my aunts out there who patiently wait for me to update this page.  I'll try to do better over the next few months :-)

If you would like to see more ballet clips, send me an email and I'll send you a link to them.  There were too many to post here.

Winter fun!

Success!

It's been awhile.  I've been crazy busy catching up on wedding photos and the usual insanity of parenting and running a business.  There have been many moments when I've thought, I need to write this down but just didn't find the time.  This evening I had another one of those moments and I'm determined to get it recorded.

Today was C's IFPT (or maybe ISPT) meeting.  I don't know what the letters actually stand for so it makes it challenging to remember what it's exactly called.  In short, this is a meeting we have every 6 months to renew C's treatment plan, all to satisfy the insurance company.  It's a hassle.  It's not very fun.  I feel very useless in these meetings but it's the necessary evil to continue his supports so I'll sit there quietly and be good.  During this meeting the BSC talks with the case worker(?) usually over the phone.  She goes over things that have improved and then goes over the laundry list of issues that still need work.  Then the BSC checks in with the psychologist to clarify that everything is as it should be and we're done.  It takes very little time and in all honesty, I'm so thankful for the team of people working with my boy.  I'm so thankful that he has these supports.  I just get so frustrated by how complicated the whole system is.  I often feel like I need a manual to understand who does what. 

But that's not the success part.  The boy has come far and life is so much easier than it once was.  Case in point... after dinner, the boy was (as usual) expecting a round of video games.  I had the fun task of informing him that video games were off the schedule due to the extended computer time he and his enjoyed this afternoon.  Success #1- no tantrum.  A year ago, this would have sent him over the edge- a change that he wasn't expecting.  Tonight he paced.  You could see the anxiety building.  He was holding his hands.  He was trying to negotiate.  I offered a board game as an alternative.  He settled down and disappeared.  Crisis averted.

We actually didn't see him for the rest of the evening.  He was upstairs reading.  I checked on him and he continued to read.  It was a nice quiet evening.  S busied herself working on some puzzles in a coloring book and C eventually came down and started helping her.  It was such a sweet moment.  Then it was bedtime so I sent them to go get pjs on. 

Another unexpected twist.  The boy didn't get his board game.  We didn't know he was set on playing the game.  He wanted to play Monopoly.  It was 10 minutes to bedtime, not enough time even to play a shortened version.  He was once again on the verge, pacing, getting louder and more agitated.  I pulled him into my lap.  Sometimes squeezes help him process.  I explained that I didn't know that he was still expecting the game.  I offered to put the game on the schedule for tomorrow.  He was not sold but he was not flipping out either.  It took a bit of time and some silliness and ultimately making a check list for tomorrow, crossing everything off until we get to Monopoly tomorrow afternoon.  He was willing to put on his pjs while I made the list.  The list is on the fridge waiting for tomorrow.  The boy is happily in bed and I'm happy to have been able to talk him through this.  Success again!

I know this probably seems like nothing.  Some may even think we're coddling him by talking him through these things instead of "laying down the law" but I've been there so many times.  This isn't defiance.  That's what is so challenging with his Asperger's.  He's not deliberately trying to disobey.  He wasn't avoiding going to bed.  These deviations from his expectations produce genuine anxiety and sometimes he has more difficulty coping than others.  Yelling doesn't help.  We're at the point where we really need to talk him through these feelings, to help him to identify things he could have done differently.  It's a process but it helps.  It's probably a good way to parent any child, at least when I have the patience for it. 

But I'll take this success and enjoy these moments.

Advent- Day 6

December 6

Advent 2011

So we have several advent calendars but one that is a Bible verse each day.  I've been recording the kids reading them each night and then planned on having Andy magically turn them into a movie but thought it might be better to share our readings each day.  So here are the first 5.  Enjoy!

and please excuse the quality of the video.  it's shot with my little canon powershot in low light which means lots of grain...

December 1

December 2

December 3

December 4

December 5

Merry Christmas and remember the real reason for the season :-)

and thanks to g'ma for the verses

A Boy and his Books

The boy loves books.  It's no secret and actually we've had to use books as punishment in recent weeks.  When the boy is misbehaving or non-compliant, the more clinical term, we've taken away video games...

"That's okay Mommy.  Video games were not on my schedule tonight" (yep, we're always referring to our schedule in this house)

So then we take away TV shows.  The recent favorites are Word Girl and Wild Kratz.

"That's okay Mommy.  I didn't want to watch them this afternoon"

So Mommy, with steam coming out of her ears but keeping a very calm voice...

"Well, I'm sorry Caleb but if you're not going to get dressed for school, I can't let you read Harry Potter and the Sorcerer's Stone (for the 18th time)."  And the boy's eyes grow wide.  "But I need my books.  If I don't have my books, I can't learn."  At 6 yrs old this boy has such a desire to know everything and books are his key.  It's beautiful and heartbreaking.  And Mommy just keeps thinking how crazy this whole situation is.  And the boy is heartbroken but he gets dressed. 

I don't even set a length of time for Harry to be in timeout but the boy goes to school.  He has a really difficult day.  He tells his teacher that Mommy broke his heart.  He tells his TSS that Mommy hurt his heart and needs to apologize.  And Mommy's heart breaks a little more each time she hears.  Tough love sucks but Mommy has to stick to her guns.  Time and time again we see that consistency is the best thing for him.

Harry is on the table in the living room.  It never even got put up.  It doesn't have to be.  The TSS asks the boy if he wants to read.  She suggests Harry Potter.  The boy says, "No, I'm not supposed to read it."

We talk a little bit later.  It's been a rough few weeks.  The boy has taken us on quite a roller coaster.  That's what it's like sometimes.  Despite the rigidness, the rules, Asperger's remains very unpredictable.  He's sorry for being difficult.  He repeats the phrase and sometimes I know he means it.  Sometimes I think it's just another script.  This time it doesn't matter.  I tell him I'm sorry that I hurt his heart.  I tell him that my heart hurt to.  I give the boy back his Harry Potter and he's happily back in Diagon Alley watching as Harry gathers his supplies for school.

Apologies...

I used to hate being late.  Granted, I never wanted to be early either.  To have to awkwardly wait for someone, all the time wondering in my head if they were still coming, if I had gotten the time or location mixed up, if they wanted to see me at all.  All that anxiety over a silly meet up.  It can be tough when you don't want to be late but also don't want to be early but I've learned that I seem to be a walking contradiction.

But my problems were solved when I had kids and then when I had 2 kids under 2, at least this problem was.  You can't expect a new parent to be on time or even crazier, early, for anything.  Wrangling 2 children who can't hardly do anything for themselves... this was just the excuse that I needed.  I could let go of the guilt of being late.  I wouldn't have to stress about being early.  And should planets align and I actually arrive early for something, I could just sit back and take pride in the fact that I managed to get 2 monkeys shod, dressed and into carseats.  It would be a good day.

Then the kids grew.  They became more independent and they became more independent.  It was no longer a victory to get the shoes on their feet.  It was a victory to get them to want to put shoes on their feet.  Free will can be such a frustrating thing.

I'm now back to wanting to be on time.  I'm expected to be on time and yet, it continues to be a next to impossible task.  You see, the challenges have changed.

"Caleb, it's time to get shoes on and go to church"

"No" or my new favorite phrase (sarcasm alert) "I don't feel like it"

And the challenge begins.  Can I think fast enough to get the boy to want to go out into the world or do we plow through a fit until he finally gives in and accepts that mama is getting her way?  This is life on the spectrum.  The boy would love to spend every day, every hour of every day, at home with his nose in a book.  Sure the boy enjoys going to school, playing at the playground, going to the library but not always enough to take that first step in getting ready and out the door.

I don't often plan outings after coming home from school.  If we come home for lunch, most days, we're not going back out, unless it's to OT (that's part of the weekly routine so that's okay).  After convincing him to get up and get ready for school, it's just tiring to have to convince him to go out again especially when mama can sympathize with his desire to just be home.  Mama also likes to just be home.  This is life on the spectrum sometimes.

So getting the boy out the door when he knows it's what he has to do (like going to school) can be challenging.  Try getting the boy out the door when it's unexpected, like to the doctors.  This can be tricky, unless of course, he's too sick to really put up a fight.

Today our fun was whether or not there was school for Veteran's Day.  We all were up and the boy said that he didn't have to go to school (and no, this is not my guy trying to get out of school.  we don't really play those games on our part of the spectrum).  I said okay but let me check your folder and there I made my first blunder.  You see I have trouble reading all the words.  I can't explain it but my husband knows full well that I skim and I don't do it very well.  If I have anything important to read, I give it to him.  It's really sad but that's how I am.  And so I skimmed the weekly notice in his folder and sure enough saw the note, No School, Friday November...  Kind of skipped over the entire date.  So I told Daddy, the boy is right.  No school.  Of course my 6 yr old knows these things.  He knows lots of things, like that giant squids migrate.  The girl, we question.  The boy, not so much.  So Daddy took Sadie to school, Caleb started pouring over the toy catalog for the umpteenth time and I went to check email.

Then my phone rings.  It's Daddy.

"Are you sure he doesn't have school?  There are kids at the bus stop"

"I swear his folder said no but I'll check again"

Um, yeah, No School, Friday, November 5 for conferences.  Crap, crap, crap.

And of course, my boy is now set on staying home.  I employ all the usual parenting techniques.  I bribe- if you go to school, Daddy and I have a special surprise for you this afternoon.  I threaten- you know what happens when you stay home from school and you're not sick (the police come).  I mean business- Caleb, this is unacceptable.  You are expected to get ready and go to school.  I threaten again- if you don't get dressed, I'll send you to school in your pjs.

I thought that we were headed for another meltdown.  We had one earlier this week and I really didn't want to deal with it again.  I gave him one more chance... Mommy's going to get dressed.  You have 2 minutes to get yourself ready to go to school (I don't even have an or else because I'm out of ideas).  And while I go down the hall to my room a little voice asks for 3 minutes.  This just isn't going to go well.  I get dressed and start back towards his room.  Okay, buddy, I gave you 4 minutes.  A whole extra minute (in my most enthusiastic voice.  It's all about not showing fear).  He's under his covers.  This isn't good.  I cheerfully pull off the covers and declare it's time to get ready.  I pull out his comfy pants from his drawer and I'm met with a compliant little guy, ready to get dressed and go to school.

I don't know how it happens.  It's so stinkin' unpredictable.  I can't always tell when one thing will work and when it won't.  Life on the spectrum sometimes... you have to think quick and always be willing to bend and yet still keep your expectations consistent.  And yet, my part of the spectrum is so easy compared to some.

So, my apologies if you find yourself waiting for me.  I do value your time and I do admit that sometimes its my own fault that I'm running behind, sometimes it's the girl dawdling trying to find her missing sunglasses because she can't bear to go out to face her public without them, but sometimes it's life on the spectrum throwing us a curve.

The Sadie-Lady is 5!

pumpkins!

Big things, really big things, happened last week.  Halloween, trick-or-treating, carving pumpkins, the ballet, the circus coming to town.  Lots of excitement but probably (at least according to Sadie) the most exciting thing happened on Wednesday, Nov 2.  Yep, that's the day that the little girl turned 5 and I couldn't have anticipated how excited she was about this.  She now checks that her clothes all have 5T on them instead of 4.  If there's a 4, you wouldn't believe the face I get- a mixture of disappointment and frustration.  How could I still let my 5 yr old wear 4T clothes?!  And there we can see that we will not be growing out of our flair for the dramatic...

But we are happy to have a healthy, active and bright 5 yr old.  Not a day goes by where we're not completely amazed by her- either by her complete rottenness or by how caring, smart, endearing she is.

Year 4 started out a little crazy with the little girl being hospitalized for Kawasaki Disease.  It was a bit scary seeing my girl so sick and yet, through it all, she was her happy little self.  The doctor at Children's kept remarking about how happy she was, how sweet she was.  Because of the trickiness of the disease, there was a never ending stream of  interns coming in to check out her rash, her eyes, her fever and of course, she enjoyed the attention.  And we were just thankful that they caught it in time, treated her and that she has recovered fully but still has no desire to ever have another pinch (and mommy doesn't blame her).

swimming in the creek at camp

After that adventure, the year progressed much easier.

Sadie has really grown quite a bit in the past 6 months.  She's developed an amazing understanding of her brother and a sweet ability to help him.  She talks him through changes that might throw him.  She encourages him to play and read and make friends.  She stands up for him when other children try to exclude him.  I'm so proud of my girl!

with Ariel and Prince Erik

at Disney Studios

And she still has this amazing self confidence that I only dream of having.  My girl has no second thoughts about going up to her princesses at Disney World and talking to them about her visit, to ask Prince Erik where his dog is, even to tell the little old lady working as a volunteer, how happy she is to be at Disney World.  She danced to the music in Tomorrowland, and strutted her stuff at Disney Studios and of course we had to wear our Cinderella dress all day (in 80 degree heat) to meet her princess.  I sit back and watch her and think how wonderful it must be to not second guess yourself constantly.  I've also promised myself that I will do everything to protect that self worth and confidence.

The girl has continued into another year of ballet and improves with each week.  She practices and shows off her steps to g'ma's and papa's.  I don't even need to bug her to get ready for class in the morning.  She does it all herself.  She has a dream.  A dream to be a ballerina/cowgirl.  Not sure how the cowgirl part will come about but she's got the ballerina part down.

She was able to see her first ballet, The Nutcracker, last December and this past week we saw Peter Pan.  It was a Mommy/Sadie date which of course meant we had to be fancy.  She loved it!  Seeing Tinkerbell and Peter Pan flying.  Seeing the crocodile chase down Hook.  We both really enjoyed the afternoon and I have to admit, we're looking forward to The Nutcracker again.

the first day of school

Sadie is in pre-K for one more year.  This year she's going to Eden Christian Academy.  This is a great Christian school if you're looking for something in the North Hills.  She's having so much fun in her new school and memorizing Bible verses.  It's so sweet to hear her reciting God's word.  And with the new school there have been new friends and lots of playdates.  She's been really enjoying the special treat of going home with one of her school mates and spending the afternoon playing.

In other big news, the little girl is learning to read.  She's picked up a bunch of sight words and has started being able to sound out others.  It's been exciting and empowering.  She's thrilled to be able to look at letters and find the words, to do what her brother's been able to do for so long.  It's also made the house a little more quieter as my two little bookworms curl up with their books for the afternoon.  It's happy.

Flower girl for Aunt Betsy

Sadie's has been in 2 weddings this year.  The first in August for Aunt Jackie and then in September for Aunt Betsy and of course, she enjoyed having the spotlight on her.  She did a very good job for both events and managed to get most of the guests at Aunt Betsy's wedding to do the chicken dance around her.  I wish I had pictures or video of that moment.  It was something else but Mommy, Daddy and Caleb were also doing the chicken dance too.

We've been so blessed to have another year watching our girl growing and learning.  We often don't know where this energetic extrovert came from but we love her so much.  Our family wouldn't be nearly as exciting without her.

Caleb is 6!

This is long overdue but once again life has gotten in the way of writing time.  Big things have been happening here.  We now have a full-blown, backpack-totin', bus riding, kindergartener!  And preparing this boy for kindergarten was comparable to preparing for a climb of Mt. Everest, at least, it seemed so to me.

Intellectually this boy has been ready for kindergarten since he was about 3 and a half.  No one denies that he's a smart boy (just like his daddy).  His favorite books to borrow from the library are science books- we've learned all about the universe, discovered dinosaurs and most recently, had to read all about the flu epidemic of 1918 (and yes, there is a children's book about the flu epidemic of 1918).  But there is always a down with the up.  The boy still struggles to write often to the point of a tantrum out of tiredness and frustration.  He's also still struggling with social things- looking people in the eye, answering and asking questions.  Making friends is difficult for him.  When he's curious about kids and willing to engage them in conversation, they're not wanting to talk to him.  And then you have the times where another kid approaches him, asks him a question or says hi and Caleb walks away.  Timing can be so difficult sometimes.  We've made tons of progress but there's still more to work on.

In this past year, the boy has done amazing things.  I still get a little teary thinking about the moment in Disney way back in March, how he dressed up in a Jedi robe, got up on stage, interacted with the Jedi master and fought Darth Vader.  We made it through 4 days of Disney fun with only a few bobbles.  He enjoyed Dinosaur camp at the museum (without his little sister).  He's become a seasoned ring bearer participating in  both Aunt Jackie and Aunt Betsy's weddings this summer.  And for those weddings, he wore a vest and tie (clip-on but still a tie!).  He's gotten so much better with his writing and using his words and controlling his temper.  We've gone from walking on eggshells not knowing what might set him off to a peaceful, albeit somewhat crazy household.  I don't have to stress about getting him to leave the house most days.  He's using his words more and more to sort out differences with his sister.  He's also getting better at recognizing and expressing his feelings.  Progress is a great thing and even with little regressions here and there, you know that progress was made once and can be done again and again.

And have Caleb's interests changed in this year...not really.

The boy still loves all things science- especially at the library.  He bounces back and forth between the Star Wars chapter books on one side of the children's section to the non-fiction science books on the other side.  Caleb continues to love, love, love to read.  He devours books and then rereads them again and again.  He laughs while he's reading, he asks questions about the worlds of Star Wars and Harry Potter.  Yes, that was the big thing late this summer.  The boy read Harry Potter and the Sorcerer's Stone.  It took him a little over 4 hours.  It was a fluke.  I just randomly gave it to him for something to do.  We had tried to read it out loud a couple of times but he would lose interest just after a few chapters.  Well, apparently the problem is that silly mommy reads too slow.  Now the boy is bugging me weekly for the second book.  But this mommy is not quite ready for him to be plowing through that series (as much as I love it) so he has to be content with rereading book 1 for the next year or so.  And to his future reading teachers... I'm sorry but you've got a whole family that loves reading and so the boy is going to be well read.  We've polished of Charlie and the Chocolate Factory, 101 Dalmations (the original novel, not the Disney version), The Wizard of Oz, Charlotte's Web, Stuart Little and many more that I can't keep track of.  Most recently we've started Mrs. Frisby and the Rats of NIHM (he initially had no interest in this one but once I started reading it to Sadie, he's since become hooked).

Star Wars has also been tough.  The boy continues to love any and all things Star Wars and he has yet to see any of the movies.  I think we might be ready for Episode 1 soon (I hope).

The boy has developed some imaginary friends, which isn't surprising considering the posse that Sadie has surrounding her at all times.  However, Caleb seems to have befriended the villains.  Bowser, Emperor Palpatine, these are his buddies.  Bowser's entire family traveled to Disney with us and Caleb enjoyed telling us how Bowser and his family were having more fun then we were in different areas of the park. Most recently, Caleb seems to have recognized the importance of learning a second language.  He introduced us to El Suprimo his Spanish translator for Caleb Enterprises.  Speaking of Caleb World, it continues to grow and expand with his imagination.  I'm still not sure if I should be proud of his creativity or concerned for his quest for global domination.  But it's good to know that he's making his way and working hard even in his imaginary world.  It makes me so excited to see what he'll be when he's older.

So Caleb is in kindergarten, in our local public school.  I've been very pleased with it so far.  We prayed all spring and summer for his teacher and our prayers were answered.  His teacher is amazing!  She's caring and understanding and willing to work together with me to help this little guy.  We trade emails on a weekly basis.  She's open to suggestions that will help him in class. She's willing to let some things slide but will also stick to her guns and push him when he needs it.  She sees that much of the academics of kindergarten, he knows but that there are many other parts of school that he will struggle with.  Most importantly, I feel like I can trust her to care for my boy and that is a huge thing.  He's also making friends at school.  The couple of weeks were hard.  There was an incident on the bus and it turned out that Caleb was being picked on.  I don't have the unrealistic notion that my boy will get through 13 years of public school without enduring some teasing but to have it start on only the second week of school.  To have my boy ask me why a boy would call him a "thumbsucker"?  Why a boy would hit him?  Well, all my fears of him being targeted  and not even able to understand what was happening...  But it was sorted out.  My boy was not being targeted.  The boy on the bus was picking on all the kindergarteners and it was corrected.  And in the middle of it all, I went in to pick up Caleb from school and as he left his class line, all these little voices calling out "'bye Caleb"  It melted my heart and continues to at every lunchtime pick up.  My boy is making friends, slowly but surely.

Caleb has a team at school.  He's getting OT services, speech services and he's started in the gifted program.  I've been moved to tears at the people who are working so hard to help him succeed.  I feel blessed to be in an area where I don't have to fight them to recognize his challenges and that they aren't just meeting his needs but also helping him to grow so that he doesn't need as many supports.  It's been so encouraging and I feel confident that they'll continue to support him and encourage him to excel as he grows.

It's still bittersweet to watch my boy grow.  I miss that little baby who loved to curl up and be read to but I love this little boy that is so smart and caring and silly.

Picture Time!

Caleb's 6 year pictures and Sadie's 5 year pictures.  I'm happy with them and I didn't even need to bribe the boy to wear the hat :-)

The Little/Big Sister

We know that our little Sadie is a gift from God. Of course, we believe that all children are gifts but Sadie's our special gift. God knew Caleb and God knew that he needed Sadie.

Sadie has done more for Caleb than all of his therapies. I often wonder what our boy would look like if he had been an only child in our house of quiet introverts. Would he have retreated more and more into his books? Would he still struggle with games of pretend?

Our Sadie, from the start, refused to play by Caleb's rules and drew him out of his world and into her's with her imaginary Mexican family, talking dogs, ballerina cowgirls and, of course, the princesses.

Now as they're growing, I'm seeing Sadie beginning to take on a new role.

We spent the weekend at camp. Just me, the kids and Pappy (Andy was home working and participating in movie magic, being an extra for Batman). Weekends at camp are challenging- the nearest grocery store is a little one in a town about 30 min away over the mountain, there's no cell service, and then there's the constant reminder of my stepmother- but we do these weekends with my dad and hopefully make some new memories at their camp in the woods.

As the kids are getting older, they get more and more excited about going to camp. I'm thinking it's less about being out in the woods and more about Pappy's tendency to be very generous with cookies and Bugs Bunny cartoons. But the kids were very excited to go up. This trip was for cousin C's birthday and to pick blueberries.

As excited as the kids are to go to camp, these weekends can be a little more challenging for the Boy. It's really hard to keep a schedule and a routine at camp. Caleb needs to be very "go with the flow" and after a few days of that, he's often done. My dad has gotten much better in understanding Caleb but I know the tantrums make him uncomfortable so I'm on supermom duty trying to manage it all.

This weekend, Supermom, had a sidekick and I got to see my little girl understanding and trying so hard to calm her big brother.

Caleb did very good most of the weekend but we did have a couple of bobbles. One in particular was during video game time. This is often in the evenings when the Boy is tired, spent (coping-wise) and it makes for a sometimes volatile combination. In these situations, he has a really difficult time losing gracefully. This evening was no different and I'm not exactly sure how it happened but the boy lost a game, got very upset and when I came into the living room, Sadie was with him, trying very hard to calm him down. I could hear her soothing voice and see her gesturing with her hands, explaining that things were okay and that he needed to just settle down and we would sort it all out.

It was a sweet moment and made this mama very proud of her girl. Her little girl, growing up and recognizing her big brother's challenges. Her little girl caring more about him, than about playing her game with Pappy. And Caleb responded to her, calming down and then coming to me so that we could sort it all out.

It's happened a few more times since then. He hasn't gone into a full-blown tantrum but she's recognized instances where he might have difficulties and calmly tried to talk him through them.

I know she doesn't know Aspergers or even Autism but she loves her big brother and wants to help him. And this mama is happy to have all the help she can get, especially if it helps her boy.

Still in Holland: Part Two

We had a great week with G'ma. We filled the time with lots of fun activities and still made plenty of time for stories and playing pretend. Part of keeping Caleb together, means still having time for him to escape, to curl up with his 2 best friends- Giant Frog and a book. So we had plenty of time for that.

On G'ma's last day, we had some extra time so we decided to go to the Science Center for the morning. It was a nice way to avoid the heat but it was also very crowded. There were several camps there so we skipped the first two floors and headed up to the top floor to try to avoid the crowds a bit.

It's been awhile since I was last at the science center. It's changed quite a bit and I love the changes. One big change is the addition of a gated area on the top floor for ages 3-6 and their families. This was perfect for us. The camps started with kindergarten age kids and many of them couldn't come in because they didn't have chaperones with them. It was the perfect place for us and many of the other families trying to enjoy the science center.

The area has several climbing spots, a big water table, a place for dress ups and a little book corner and my boy's favorite, at the back is a contraption for moving plastic balls around. A conveyor belt takes them up to a bin at the top of the machine and when the bin gets too full, a whistle sounds and the balls drop down on whoever is underneath. I think just about every kid there loved that part. And my boy was right with them.

It was here that it hit me again- my boy is different. My boy has asperger's.

Caleb was eagerly loading the conveyor belt with balls or turning the wheel to take them up to the bin. He was so happy. A group of 6 yr olds convinced their chaperone to bring them into the area too. They quickly came back to this contraption (how could you resist?!). Caleb wasn't bothered by more kids and they didn't seem bothered by him. The whistle sounded, the balls dropped and it all began again with dozens of squeals and giggles. I kept watching Caleb and I noticed some boys working with him. They had their ages on their name badges- K-1. These were Caleb's peers. Caleb will be 6 in a little over a month. And as I watched him and them, he was bouncing and giggling and flapping. It was a bittersweet moment. I was thrilled to see him so happy, having such a great time. How can you not feel that joy when you see it on your child's face? And yet, seeing side by side the difference between my boy and these other children...

It's a reality. Fortunately, it's not a hopeless reality. He's going to keep growing and keep learning how to fit in this crazy world. He'll become more like these other kids, with a little extra help but at the same time, I truly hope that he doesn't lose that freedom to express his happiness. As a supremely self-conscious individual, I love that both my kids are so confident and willing to express themselves without reservation. I envy that freedom. I want Caleb to learn but not lose himself in all these treatments and therapies. Hopefully there will be a balance.

After awhile, he grew tired of the balls and ready to explore more things. I thought he might appreciate a reading break after being with all those kids for so long. I led him over the the book area and my boy casually glanced at the books but before I could take a seat to read with him, he had turned around and was making his way back to the water table?!?!! Of all things! He went to the water table, put on an apron and proceeded to get busy in the water. Who was this kid? G'ma was just as surprised as I was. This is the boy who still insists on changing his outfit if even the smallest drop of liquid lands on him. How many trips to the Children's Museum where we couldn't even consider going up to the water floor? And to turn down books in favor of getting wet?

My boy is growing. My boy is learning. My boy is getting a handle on his quirks and having an easier time playing.

Caleb spent a good 15 minutes playing in the water. He didn't even bat an eye when he got sprayed in the face by one of the other kids. He didn't complain that there were wet spots on his shirt and shorts. And at the end, we didn't spend any time at all with the books.

It was a good day and a great visit! Thank you G'ma for coming out to play :-)

Still in Holland: Part One

Yes, we're still in Holland. Many of you might say, "What?!?!" and if that's you, please click on the link and read. I really enjoyed that piece, the first time that I came across it.

We've been in Holland for some time now and maybe it's that it's becoming more familiar, or maybe it's becoming more like where we prepared to go but this week, I saw several reminders that we're still in Holland or that my son still has Asperger's.

I do quickly admit that I feel very blessed. With such a wide range of symptoms and abilities, I'm thankful that my boy is where he is. I'm thankful that he has a great team helping him, that we have great family and friends who understand and support us. I'm thankful for the huge progress that he's made in just this short year of treatment. I'm thankful that he's eager to go to school and that (so far) we have a school district willing to accommodate him and work with us to encourage his success. I'm thankful that I don't have some of the worries that other parents have.

I spend a lot of time reading their stories, other experiences with ASD and I am again and again amazed at the strength and dedication these families have. And then there are times when I'm reading and thinking of my boy and part of me says, "This isn't him. This diagnosis isn't real." I convince myself that he's just quirky and sometimes (but don't tell) I feel like I'm waiting for someone to say, "wait, he doesn't have that. He doesn't need all these treatments."

And then, we go out into the world and I see him with others his age and it hits me, sometimes hard and sometimes painful.

This week, I was hit twice. The first time didn't hurt too much because of the joy in my little guy's face. With G'ma here for the week, we decided to spend a day at Idlewild Park in Ligonier. This is a great park for kids and families and worth the trip if you're ever in Western PA.

It was a great day (hot but still fun) and it happened to be Super Hero Week for the park. Spiderman, The Hulk, Iron Man and Captain America were all going to be there, signing autographs and posing for pictures. Even thought my boy lives for his superheroes (and I'm convinced that Caleb Corporations has evolved from Tony Stark) Caleb actually didn't seem too eager so we took our time getting through the park and then we made it over to the stage shortly before the first set of superheroes were done. Of course, there was a decently long line stretching out into the hot sun of people waiting to get their autographs. We were already pretty hot and I had flashbacks from March and standing in line with Sadie to meet Ariel and Prince Eric on our Disney trip. I really didn't want to relive that experience. Caleb seemed content to go watch the characters from the audience with G'ma so I took Sadie on the ferris wheel. We got on the ride and the superheroes wrapped up. Then, from the top of the wheel, I could hear my boy and the tantrum began. I tried to relax- for many reasons, mostly that leaning forward in our little cart caused it to shake and rock and while I'm not completely scared of heights, in situations like this my very active imagination quickly plays out scenarios of me and my daughter falling to our deaths. So I sat back and strongly encouraged Sadie to sit back and not look for her brother. Of course, I knew G'ma could handle him. I couldn't ask for a better prepared G'ma for Caleb. She's a first grade teacher for many years and happens to have a ton of experience with kids like Caleb. She's often my go to person for advice and strategies for handling him. No problem. Plus, I thought to myself, he hasn't had a real tantrum in months and certainly not out in public. Again, I tried to relax and again, I could still hear my boy losing it. And worse, from our vantage point, I could see the people turning and staring. I swear I could hear their thoughts- I used to be there, the person watching the kid who is way too old having a tantrum. Sadly, I admit it, I was also the one thinking why can't the parents control their kid. I've since learned my lesson.

I wanted to yell for the ride operators to let us off. My mama bear instincts kicked in and I desperately wanted to be there to calm him down and sort things out. Again, not that I didn't trust my mom-in-law. I knew G'ma was doing her best with him. I knew she had an extra difficult situation- a hot, tired, cranky and disappointed boy is not always easy to calm down.

He continued to cry and scream in waves while Sadie and I went round and round and waited as they unloaded the wheel. It seemed to take forever. It was the longest he's carried on like this in ages and it felt like the longest I had ever been stuck on a ferris wheel.

He was still very upset when they let us off and I pulled Sadie over to the bench. I left her with G'ma and grabbed Caleb, still crying, and pulled him away to try to find some place more private. We headed for the bathroom and he settled a little while I put cool water on his hands and face. Then we found a quiet bench to sit and talk about how to solve this problem that made him so upset. All and all, he calmed down pretty easily and apologized to G'ma for carrying on like that.

Then mama stood in line with her boy to wait to meet Captain America and Iron Man.

Once again, all was right in Caleb's world and despite the tantrum, mommy couldn't resist picking up a Captain American doll for the boy to get autographed. (and just so you know, I was not rewarding the tantrum. that's not how it works with these kids. he didn't even ask for the doll and would have been perfectly fine going up to see the characters without it) He stood in line for over an hour, not even taking a break to go for a ride on the carousel. He was determined to not miss his heroes and the boy didn't even complain about the heat.

After getting our autographs and pictures, the boy needed some sensory time so we headed back the ball pit at Jumpin' Jungle. This is my boy's happy place. Feeling all the balls in the ball pit is perfect for him and all his sensory seeking. Not to mention, it was raining off and on and G'ma and I were enjoying the idea of sitting for a bit too.

After the ball pit, it was a climb up the cargo net. Then Sadie and G'ma hung out at the zip line, while Caleb and I went into the Jungle Catch. It's a little netted area with a bunch of air jets and plastic balls that you can set up to float on them. Caleb gets quite a kick out of this place and within minutes he was bouncing and giggling hysterically. Then he started putting his face over the jets and letting his hair stick straight up. I snapped pictures, eager to record the joy on his face and that's what it was, pure joy. My heart melted and then I glanced around at the other kids in there and I noticed it. For the first time I really saw it. He was bouncing and giggling and up on his tiptoes and flapping. Not bad things but things that you see in kids with ASD. But he smiled at me and I forgot all about it. He was happy and that's all that mattered.

2 steps forward, 1 step back

hmm, it really has been awhile. Summer ended and for awhile it was busier than when the kids were in school. They did a week of camps at the museum (Caleb in Dino Camp, Sadie in Art Camp) and then went to vacation Bible school the next week. In the midst of that, Caleb had his evaluation for Kindergarten (testing to see if he would need special ed services or not).

All of this has been interesting and challenging and stressful for this mama. The boy has come through it all really well. I've been so proud and amazed by how he handled the transition from school to summertime. We haven't been completely bump free but we've been much better than previous years.

I'm not sure how much of it is him coping better and how much of it is us learning to read him better, to know when he's had too much and needs his space to quietly read or to spend an entire day in pjs.

I love my boy and I'm thrilled to watch him grow. I'm excited that he's ready to go to Kindergarten, that he's so smart and surprises me each day with some new fact that he's picked up somewhere (yesterday it was about the parts of an ant, head, thorax, abdomen).

At the same time, I'm scared for him. He's leaving my protection, my safe haven where it's just us and we understand him. He's going to be with other adults, with other children and sometimes those adults aren't going to be patient with him and sometimes those kids are going to be mean to him. I tear up thinking about it and yet I know, that's a part of growing up. I know that I can't always be with him and I know that if he's going to understand how to be with others, he's going to need to spend time with others and sometimes that will have to be without me. I know my boy is amazing and funny and such a sweetheart. I also know that he's kind of weird and can be hard to talk to and I'm praying every day that he gets to be with people who fall in love with all of his amazing qualities and can overlook his quirks.

I see him trying so hard and I wish I could make it easy for him. This week he tried a small bite of zucchini. For most people, this would not be something worth posting about. He took the bite without resisting or fighting us. He swallowed it even while gagging and then it all came back up. We don't yet know why his body is like this. We just know that he can't control it. As I was cleaning him up in the kitchen, he kept saying "Mommy, I'm sorry. I tried to keep it in."

Today we had lunch and playtime at McDonald's. It's been a nice place to meet one of Sadie's classmates there. We have a long lunch with plenty of breaks to play and there's a constant flux of kids in to eat and play. It can be stressful though, at least for me. Up in the tubes, I can't see what's going on and I can't always keep track of Caleb and how he's interacting with the other kids. It's a loud place and so of course, my kids are loud too. Unfortunately, Caleb's loud, weird voice sometimes can scare the kids. Caleb will be trying to play but to some kids, his playing can look aggressive. And of course today, after some time playing, a group of girls decided that they didn't really like Caleb being around them. They told their moms that he was trying to hit them. Then they (the girls) told me that he was trying to "beat them up." I did my best to assure them that he wouldn't hit them, that he just liked to be loud. I could see in their eyes, they didn't believe me. I pulled Caleb down to apologize to the girls. The girls gloated at Caleb that they had told his mom. I still have no idea what happened. He says the girls were being mean to him and I can believe that but I've also seen other kids unsure of him when he's yelling and carrying on.

It's these situations that make me nervous. It's these situations that make me pray more fervently for God to send him a special friend to navigate school with all it's complex social situations. We just hope for 1 friend.