Thursday, May 5, 2016

Restart of School...

Max and his new teacher have been working diligently at getting to know each other.  Max has really been enjoying 6th grade, just in time for it to end.  We've put in the request that his new teacher come back next year too.

He's been working on Ancient Civilizations.  I think we have finally started to understand, or explain better, how Max likes to learn.  He enjoys making things, and having work to show off. We say he likes to do first grade things, at 6th grade subject level.  This means he likes to color, and listen to music, and short videos, and shorter books.  Once we have picked up on this, he's taken off! He's been filling up his wall with his work and loves to share them with everyone.

Let's take a stroll through some of his work lately.

He's doing a good job of communicating to his teacher what he wants to do.  It usually is coloring, listening to music, watching a video, but occasionally he will ask for homework.

They are working on how to best do math.  It's been a subject he knows, and doesn't especially like, but it's difficult to figure out the best way to communicate through with his talker.  He gets frustrated that he can't quickly answer these easy questions and then wants to shut down. 

 This was some of his homework, a Maya mask.  He wanted to do it in water colors.

This is Machu Picchu, he wanted to color it red, redder, and black.  He was having an especially emotional day (something we'll talk about in another post) and these colors represented his mood while he listened to the blues.  

Then we met the llamas of Peru. One is very fancy.  One is brown.  This is how he wanted, we went with it!  He made Machu Picchu in the background of his picture by tearing the paper into mountain shapes. 

He's been interested in the colorful clothes they wear in the Andes, and was interested in the weaving too.  Weaving is a great activity for someone with fine motor skills, which Max has very little of.  But you know that didn't stop me from coming up with a way for him to weave.  We pulled out some yarn from his Nonni's stash and let him choose the colors he wanted.

I made a little "loom" out of cardboard and used a pipe cleaner shuttle to guide the yarn through. After his teacher and I would weave it through each side, we would help Max  grab ahold of the yarn and pull.

Then I made a little beater (complete with a handle for him to hold onto) to tap tap tap the yarn down. 

He chose Nonni's yellow yarn first.  Then orange, furry purple and finished with the soft yellow. 

The fact that he got to make something creative with the yarn mom left behind was pretty special to me.  She would have really loved the finished product.  I know I do!

School is out in just a few weeks.  He has more work to do between now and then, so hopefully I can get another post up of his activities. 

Sunday, April 24, 2016

I believe I can fly...

Max has been under the weather for the past few days.  He had fever, sneezes, coughing....the usual "justavirus" hit him pretty hard.  Although he missed some therapy and school, we were thankfully able to keep him at home through it all.

He started to feel much better yesterday, but we still hung close to home for the Daddy to get work done and the Sister to get ready for prom.  He got in on a few pictures with her all dressed up and even gave us some smiles!

Today, we knew we wanted to try and get him outside since he's been cooped up for days feeling punky.  We came up with the idea to take a ride out to the airport...pretty fun, huh? Actually a ride to the airport usually means someone is leaving so it's not always Max's favorite thing to do.  We were able to convince him it would be fun today by taking the newly opened DIA A-Line train from downtown Denver to Denver International Airport.  

Or first speed bump in our plan was it was also a Rockies baseball game, so parking downtown was impossible in Max's huge van.  There are about three handicap designated street spots near the train station and they're always taken on Sundays.  After driving around for about 20 minutes trying to score a spot, I remembered there were several stops along the route and we could probably find one much less crowded.   We found the next stop and got going on our little adventure!

We got our tickets.  The kids were a discount, and our ticket was $9.00 for an all day pass. 

The train arrived and we were able to roll right on.  On the other light-rail trains throughout the metro area you have to get on at the right door and have assistance to board.  The whole experience was very accessible! 

Max made pals with the train officer and away we went to the airport!

There are 6 stops between downtown and the airport, and faster than driving.  

We stopped for a quick picture before the train took off again and another one came in.  It seems they were coming and going every 10 minutes. 

Next it was time to take Max into the airport.  This is the part I may get a little teary eyed typing and seeing these pictures.  Max hasn't been in the airport with us in about eight years.  In all my years of flying,  I've never seen a kid in a wheelchair like Max at the airport.  Parking isn't all that accessible -- and certainly pretty impossible in his big van.  And if we were able to get him inside, there was nowhere to go -- because he can't fly, again, inaccessible.

But today, we were able to take Max on a field trip of the airport.  With as much travel as Steve has been doing lately, it was so fun for Max to get to see where Daddy goes to get on a plane.  There weren't any planes he could see because we couldn't take him through security, but he got to see everything else at the big airport!

We started with security.  We told him this was where the officers were to help check everyone's ticket before they go to their planes.  

 A big statue of Jeppesen, a famous aviation pioneer, who the terminal is named after.

We stopped outside Customs, we told him anyone who flies to Colorado from another country has to stop here first to see more officers. 

We walked across the bridge to find a moving walkway.  Abbey walked alongside him, and Steve pushed him on. 

But then, wait!  Max got to move along all by himself!!

See ya, Dad!  I've got this!!

Just a big guy at the airport. 

After walking around all the areas we could access in the main terminal, we took a walk to baggage claim.  There were a few stranded bags making the lonely loop around, but he thought the machines were cool and noisy. 

Abbey and Max caught a ride on a ski lift in the airport.

Before we headed back to the train, we took Max into the family restroom to try a pants change.  It is incredible to me the lack of facilities for people with disabilities in public restrooms.  Infuriating, unbelievable, incomprehensible.  It is something I would very much like to find a solution to for Max. So many of our outings are planned around how long until we can get Max back to his van to change his pants if he needs?  How close can we park to get him back in time before he has a melt-down?   We were able to make due with the space we had, but it shouldn't have to be such a chore. This is one of the biggest hurdles of not being able to fly with Max -- the lack of toilet options.  Such a very basic human need that we all take for granted. 

We said goodbye to the airport and headed back to the trains.  We got on and as we were about to leave Max started crying.  And he cried and cried the whole way back to the park and ride.  And cried once we got to his van.  And cried all the way home.  We thought he was just over-stimulated.  Too much activity for the day.  So when we got home I put him in his dark bedroom for a rest.  I was in bed by him and asking what was wrong, why was he so upset.  We finally figured out he was so sad to leave the airport.  He was ready to go somewhere.  I told him we would have to plan another adventure to the airport soon and he eventually calmed down.  

He was eager to tell his nurse tonight all about his adventure.  We will have to try another ride out to the airport again.   And this summer the train will come out our direction so it will be even easier to catch the ride to the airport!  And one day...mark my words...we will get that boy on a plane again! We will take the train to get there!

Sunday, April 17, 2016

The grief of blogging...

When I lost my mom in August, something happened that I wasn't prepared for.  I lost my voice.  Not literally, but in the way that I have always been a strong advocate for Max, and I found myself unable to speak up.  I felt so much that my emotions were just on the surface that I avoided conflict at any cost.  That caused a few major things in Max's team to slip.

That's the thing when you have a child who relies on you for everything.  Your voice is their voice. Your arms are their arms.  Your hands are their hands.  Your strength is their strength.  So when I was faced with the grief of having lost my mom after being her caregiver, I didn't want to do it anymore. I felt too tired.  I felt too sad.  I felt too insufficient.  I felt too insecure. I felt too EVERYTHING! I didn't WANT to be a caregiver anymore.

Now, don't think I was curled up in a ball leaving Max to his own. Of course I still gave him everything I had.  We were still happy in the sad times. We've been excitedly looking to big sis's future after high school.  We have gotten by with Steve traveling an insufferable amount. We have worked hard at our jobs, and charities, and new adventures on the horizon.  We get up, do all the things we do to get by; therapies, school, making food and medicine, and doctor appointments.  But at the end of the day I would collapse and wonder how I got through another day.

For our anniversary, Steve and I got away for a trip without Max.  This was the longest time we've ever been away from Max and the first time we've ever left him with someone day and night.  His nurses stepped in to cover all the night shifts and one of his previous nurses stayed during the days to give us this gift to be together on this special trip.

While we were away, I recharged. Steve and I were able to reconnect without all the nonsense of life getting in the way.  I remembered I was brave, and strong, and smart.  I remembered that there is one thing I know better than anything else in this world...and that's taking care of Max.
I also remembered that sometimes I have to cut myself some slack.  It was earth shattering to lose Mom....but I'm okay. And Max is okay.  I am trying to move out from the heavy wet blanket I've been wrapped up in the past 8 months.

In the past couple of months, we've shifted his school help and have landed on a great team for Max. Yes, it's frustrating to be at the end of the school year before we get the ball rolling on it all.  But, the rest of 6th grade will be good, and it's going to be a great 7th grade year.  Max has been so proud of the work he's putting out in the past two weeks.  He loves to learn and he loves to do work.

We also had to shift a few things with his medical team.  No one was's just Max is growing into a man boy and we needed someone who fits better with this point in his life.  I questioned myself constantly about leaving one provider to another one.  I didn't want to rock any boats or upset anyone -- mostly because I didn't have any fight in me to explain my reasons.  But, as it turns out everyone we deal with at our hospital are professionals and helped us through the transition and we're in with a great new team...go figure.

So here we are.  The grief of blogging is starting to subside.  With the blooming of flowers, and longer days we're able to get outside with Max and brush off the winter.  Hopefully that will mean a lot more moments to share here.