Tuesday, November 30, 2010

School updates...

Max has been clipping away at school every day. He was so upset with not having school during Thanksgiving break, that I'm not sure what we'll do on Christmas break, or heaven forbid...SUMMER!

It's amazing the grumpy mood he is in when it's the weekend now. He screams and cries the whole day long...unless or until we're doing "school". So, we had a lot of "field trips", and I tried to duplicate some of his studies to get a reprieve from the crying.

And while I would love a little break on the weekends from therapy and school, it seems like he's really loving it, so we'll have to fit it in there somehow.

With the full weekend of cooking for two holiday get togethers, and Max's continual crying fest, I didn't get any photo updates here on the blog. But, I've really got some good ones to share!

So, without further blabbering from me, here are the latest photos from Max's school experiences...

Max reading 'Caps For Sale' with his cap and his monkeys...
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During his Skype session today, they were talking about stars, and Christmas decorations, so we got some for him to share...
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And, on to the letters. I won't translate this time, since there are so many. Have fun figuring them all out! :)

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Sunday, November 28, 2010

Traditions...

Growing up, my family had a lot of traditions around the holidays.

The night before Thanksgiving, my siblings and I would go over to Grandma and Grandpa's to help prepare the meal for the whole family. We would chop and stir, and crash on the couches, only to wake up a few hours later to Grandma puttering around in the kitchen starting the turkey and their percolator coffee maker.

Thanksgiving night, we would spend the night with an Aunt and Uncle, and stay up as late as we could with our cousins playing Monopoly, and Nintendo, and watching Christmas movies. Then, set up the Christmas trees the next morning, and maybe even an early trip to see Santa Claus.

Being so far away from family this time of year never gets easier. And there are few things in our lives with Max that we can make occur time and time again with certainty. His is not a childhood of certainty, like mine was. But, when we can, we like to make traditions happen.

He is working on a printout for school on "Holiday Traditions". I've had to think a lot about what we do every year that may seem like a tradition for him. Which takes us to the zoo on Thanksgiving.

We've done a lot of things on Thanksgiving since Max was born. Drove to Virginia from Colorado, drove to Oklahoma from Colorado, spent it in the PICU at Children's Hospital, and spent it friends, and spent it alone. But, there is one thing we've done more than just once on Thanksgiving...we've gone to the zoo.

Our day started out a little rocky, not knowing how Max was going to tolerate the freezing cold temperature, or how his fussiness was going to affect us getting out. We finally decided to just go for it, and got ourselves bundled up and ready for a romp with the animals.

As it turned out, the weather was very pleasant, around 35 degrees. But that blessed Colorado sunshine was blazing, so we got to walk around with just light jackets on. Max is always much more warm than we are, so he just wore a fleece jacket and some warm socks, and was of course, too warm!

The crowds were very light, and we took advantage of it by taking Max into all of the buildings, which we never do when it's crowded. And as an added bonus, it seems all of the animals were excited to see Max had made it to see them on Thanksgiving. We've never seen them so alert.

Here he is before we went in...
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Roooaaar...Hi Max! Happy Thanksgiving!
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Hey Max, do you think you could talk them into letting me out to play?
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This peacock decided he needed to come up on Max and see why he was crying...all while giving off his own wild cry.
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A fish as big as Max!
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Max...did you smuggle in any pumpkin pie for me?
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Even the rhino came out to say hi to Max!
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But this was the best! Max was done...and ready to go back to his van. So, as Max does lately, he started screaming and crying instead of using any of his words or signs to help us know what he's wanting. He was having himself a full on fit when this gal stopped eating and started walking our way.

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Is he okay? ... I heard him crying...
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Yes, he's fine...Happy Thanksgiving Max!
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I like our new tradition!

Monday, November 22, 2010

Photo catch-up...

This was Max after occupational therapy last week. It really took it out of him!

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Addie came over and Max gained a piano teacher!

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She was most helpful in showing him proper form.

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Hey! We're jammin'...come back later!
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Max works on something every day when he skype chats with his friends at school, since they are always working on their writing assignments. Today, they were working on making turkeys, so Max made a turkey too.
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Today got a surprise from his teacher. She makes caps for all of her students, and had just the right one for Max. He's now The Max in the Yellow Hat....
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And now a little flashback...to squishy ittle bittle Max..
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And back to today...our enormous boy who is too big in his Momma's chair!
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Thursday, November 18, 2010

Picture day...

Today was a very special day for Max.


Picture day at school!


Since Max is taught at home through the school district, he doesn't get to participate in most of the in school activities, but his classroom teacher worked her magic and the whole school came together to make it work for Max to get his photo taken today. Not only so we could have a school photo of our guy, but so he would be included in the year book too.


The day started a bit rocky, not knowing if Steve was going to be able to join us for picture day, because he had been called for jury duty. But, it turned out he was not needed, so he got home in time!!

We dressed Max in a new shirt, and tried our best to tame his wild hair. Steve told me to leave it alone, that if his hair was fixed it wouldn't look like Max. I finally agreed, and let the wildness show through!

When we got to the school, I called the front office and let them know we were there. His principal came out to meet us, and let us know we needed to stay out of the front office because there were a couple of sick kiddos that had been in there earlier. He ushered us through the front doors, and up to where photos were being taken.

We parked Max's chair, and the photographer took about 6 photos. She showed them all to us and we got to choose a couple that looked good. I think he was only looking up for two of them, so those are the ones we chose. He was smiling a few times that she was trying to get his attention, but she didn't take the shot because he wasn't looking her way. Oh well...I was aiming for him not having his hand up at his mouth, or having his head down. So, I'm happy she at least got one with him looking up.

I completely forgot to get a photo of him getting his photo taken, because we were all trying to get him to look up! It was the photographer, Steve, me, the SSN (special support needs) Teacher, and his 1st grade classroom teacher all trying to get him to look up and smile. He thought it was a party!

After we decided on the photo as the "yearbook shot", his classroom teacher and SSN teacher took us to his classroom to meet his classmates. It was like the President himself was walking through the halls. We had school admin lining the halls making sure kids were staying in their classes, so Max could be ushered through the hallway to the classroom with as little germ contact as possible. I think the whole of the school must know who Max is, because kids and teachers/admins alike were saying "Hi Max!" as we walked down the halls.

When we got to his classroom, the principal was sitting with his classmates, and they all turned around to see Max come in. In unison they said "HI MAX!!!!". I have to stop now and say I think I did pretty well to not start bawling when I saw 20+ kids so excited to see their "friend" Max...with each one of them wearing little surgical masks.

His classroom teacher bought masks for them to wear so they would "keep their germs to themselves", and so they would know what it was like for Max who needs to wear a mask when he goes places. They were all so sweet with him. Some really wanted to check him out, and get close, and others weren't so sure.

His teacher asked the kids if they had any questions for us or Max. One little guy raised his hand and asked "Does Max like to eat a lot?". I told him that Max does eat a lot, but not the same way you all eat. I told him that Max has a special belly button that we pour a special milk into that feeds him. And he likes to taste things with his mouth, but he can't chew like they can so he just eats through his special belly button.

The next question came from a little girl who has written Max two letters...and I think another one is on the way. He wrote her back in one of his writing sessions...and I think it's fair to say, she's in love. ;) She asked if he has a big seashell collection. I told her he had a lot of seashells from when we lived in California, and he loved to go to the ocean and we would get him seashells there. She then told us she was going to Florida at Christmas, and would bring Max seashells back.

One little girl wanted to know what house we lived in. The teacher told her our neighborhood, and she said, "yes, but what house?". So Steve helped with that one...she lives in our neighborhood, and wanted to know where Max lives so she can see him playing outside. I've exchanged a couple of emails with her mom already, but I thought it was cute she wanted to know EXACTLY where to look for Max!

Then one more question about where did Max sleep...in a baby carriage or a crib? When I told them just a regular bed like you have, that opened up a whole new set of questions...does he fall out of bed, what does he do when he goes to sleep, how do you keep him in there? We were fielding all of those when the teacher asked if they wanted to sing a couple of songs with Max.

They sang a couple of Thanksgiving themed songs, and Max did join in with them. I got one on video, but I'll go ahead and let you down now, until you're sitting in our living room with us, I can't share the video or photos with the classmates from today. I can't presume that the parents of the kids would want their children on a stranger's blog, so we'll keep them offline. I did crop the kids out of one photo to show you Max in the classroom though.

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We chatted for a few more minutes with the kids, and his teacher before we decided it was time to go before Max showed them what a seven year old looks like when he's over stimulated by new experiences. So, we left while we were ahead, promising to come back when the weather was warm in the Spring, and of course to continue to chat over Skype every day.

Max was super proud of himself and jabbered about going to school for the very first time all the way home. We really have to keep pinching ourselves, is this real? How did we get so lucky with this whole school experience? His teacher today said they already have his next two teachers chosen for him for second and third grade, after seeing him on skype, they want to have him in their classes!

It was a pretty perfect experience, and one I really could never have imagined happening for him. We are truly so thankful for this school and his teachers and staff at his elementary school.

Wednesday, November 17, 2010

Max's friends...

Max has been joining his classmates daily via skype to interact with them during reading and writing time. Usually, his teacher reads a book, they go over what they will be writing about, and then he travels around from desk to desk to watch talk and listen to the kids reading their assignments for the day.

This week, they have been practicing writing letters. While they write, and read their letters to Max, two at a time, Max has been working on his coloring homework. His homebound teacher brought us some of the letters the kids have been writing today during our time with her.

These are some of his most precious possessions. They are inside ziploc bags because they are extra careful at the school of the germs coming into our house.

I like you cus your Max

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"I like you because you're Max"




Dear Max I hope we can see you on skype sone. Now Ms. Clayton me and you all have glassis. If you see peple loking to the side its becase they are not uost to the camra in one place and the scren in a nuther. I am the little girll with the glassis. I reaed all by my self. Ther is a picher of me on the back.

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"Dear Max I hope we can see you on skype soon. Now Ms. Clayton me and you all have glasses. If you see people looking to the side it's because they are not used to the camera in one place and the screen in another. I am the little girl with glasses. I read all by myself. There is a picture of me on the back."

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Max
hiy Max wus yor fvrt cuLr
my faet cuLr
is booW like
you even with
yor char WeL
i haf too go
biy Max fum ----
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Max
Hi Max what's your favorite color? My favorite color is blue. I like you even with your chair. Well I have to go. Bye Max. From ----

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That's her with her buddy Max in his wheelchair.

Can you stand the cuteness? Because I couldn't, and it turned me into a mess of tears during his school time when he and Mrs. J. read them together.

If you think this is sweet, wait until tomorrow...it's school picture day, and Max is going up to the school to meet his friends in person. (guarded with a yellow face mask of course!)

Thursday, November 11, 2010

Sing us a song...

Piano Max got his own set of ivories for his birthday today, thanks to his Terry and Susan. I believe every birthday or Christmas, they have gotten him some version of musical gift...because they have always marveled with us at his love for music, and how much it has always affected him.

This is the same keyboard he's been playing in music therapy, so he knew just what to do as soon as we got it set up. The keys light up, and there are about 90 pre-programmed songs for him to play along to. And of course, he can improv and write his own symphonies.

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(I wish I would have gotten his whole face in this shot, but as you can see, he's singing along to the music)
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Our little Ludwig will continue practicing, and may have some videos to share very soon!
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Sunday, November 7, 2010

Such a boy...

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We have made a daily journey to the mailbox since the "diggers" have been out making a big bunch of racket. They are building something new, but before they start building, they are digging up a LOT of dirt, and Max loves to listen to the beep beep snort snort of the big machines. We'll stop and watch for a few minutes each way.

I think it helps a great deal that the big diggers are YELLOW!