Sunday, June 26, 2016

Smelling the roses...

Max's GREAT Uncle Andy is here doing some work, and has been staying with us.  Max has been thrilled to have him here to visit with.


Today Uncle Andy and Daddy worked together on a great project to give Max more freedom outside of his house. 

They made a ramp to get him out in the back garden.  Max very rarely gets to go out to see his yard because of the steps out of the house.  He loves flowers and we often tell him all the things happening in the yard, but know it can't mean much to him without being able to experience himself. 

Today, they were able to get him out there! And he loves it!

It was a hot day, but they were able to crank it out pretty quickly working together. 





It isn't attached to the house, so we'll be able to move it out of the way to put on the side yard if we need.  And they made it out of the Trex wood, so we don't have to stain it over the years.  

Once the sun ducked behind the mountains, it cooled enough to get Max out.   



George had no idea what was going on.  I don't know that he and Max have ever been in the back yard together, and George thought it was alright to have his boy out playing with him. 



We sat down and enjoyed the nice evening breeze.  But soon it was time to smell the roses!  Max has chosen several of these rose bushes for me through the years and I always have to bring them in to him. Tonight he got to see them for himself.   Steve rubbed the flowers and plants on his hand then let him smell it. 

Following is pure joy....he reminds me every day to stop and smell the roses, to enjoy the little things in life. 










Thank you Uncle Andy and Daddy for giving Max the world in his back yard!

Ugliest Feelings...

The past couple of months have been rather difficult for Max.  He has had such a hard time with his emotions and hormones.  Going through puberty is rough....going through puberty as Max is extra rough.  He can't always express what is bothering him,  and that upsets him because he can't get his thoughts across fast enough.

We have visited with his doctors about what Max has called with his talker, "My ugliest feelings." He told us he needed to see the doctor and talk about his feelings.  We think he just gets so frustrated without being able to express himself all the time.  And that makes him angry and mix that with his hormones and he has had some rather incredible episodes of being upset.  He has had to spend a lot of time in his bedroom on his request to be by himself to calm down. It's also the only place we can leave him "alone" so he can kick and scream it out.

A few weeks ago it was all hands on deck to figure out what we could do to help him out.  We didn't know what else we could do for him, but we knew he couldn't live his days in his bed screaming and kicking.  We noticed he had one great week after his testosterone, and the remaining weeks of the month he got increasingly more agitated until he would get his testosterone shot again.  We've also been working with his dietician to put more weight on him, which has dealt him some tummy troubles until we got it sorted.  It's just been a rough couple of months for our guy.

We've been working with his PCP and Endocrinologist and think we may be on the right track with getting our happy Max back.  We changed his testosterone shots to every other week at a lower dose for a start and that already seemed to help with his emotional swings.  The other thing we've had to work on is the hot flashes he's been having. We had to  install a personal air conditioner for him.  Max has never liked the heat, but with this heat wave we've had so early in the summer, he's really been struggling.  Since he's sitting at a frosty 65 degrees morning noon and night he's a much happier boy!

Max still has his moments of feeling grumpy, but we all have grumpy moments...especially as a teenager! I can handle the sporadic moments of grumpy so much more than the constant emotional roller coaster for him.

Even with the rough spots, we've tried to have some normal moments too.

A late afternoon walk once the weather cooled. 

There were a lot of moments of cuddles in his bed. 

Showing off his new "officer" cap from one of his Secret Service pals.

A walk in the rain. 
Cool dude with his air conditioner on. 
Hopefully the rest of summer will look up!  I am certainly looking forward to more happy days not spent in his bed!

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 them....so, 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.