Tuesday, November 12, 2013

My own two hands...





Since my last post, Max has continued on with the new medication.  He had insomnia the first night, very tired the next day, and a little more drooly.  After that first day, Max has slept at night, and been quite awake in the daytime.  We have seen his smiles.  We have heard his laughs.  We have seen his myoclonic movements (jerky movements) stop.  He's happy.  And I'm so pleasantly amazed and surprised. 

Today started with school for Max.  He has not stayed awake for the whole school time in a long time.  I don't remember when the last time was.  Today, he not only stayed awake, but was engaging and answered his teachers questions.  For each answer he got right, he got a sticker. Something I tried last week to encourage him to stay awake.  Last week he got 5 stickers, and still snoozed through school. The deal was, if he got all his smiley faces, he would move on to stars.  After he got all the color of stars, he got to choose a superhero sticker. Today, he got 7, and could have gotten 2 more but he insisted he had won at the Math game they were playing, when really his teacher won.  He had to give up his two stickers in order to answer incorrectly to get the point across that he thought he should win.  
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After school, Max took a nap while he ate.  During his nap, George was playing outside.  I saw how gorgeous he looked under the tree out back and had to take a photo of him. He's such a lovely dog.  
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Max rested just enough to be ready to visit with Ms. B in Speech therapy.  Again, he has not stayed awake for Speech...or any therapy...for months!  He was awake and once we figured he wanted to play with his light, and listen to Jack Johnson he was a happy camper. He used the time to tell us who he wanted to paint for in Art therapy, which was up next.  Since he talked to us so much, he got the rest of his stickers for the day, which he wore proudly!
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In art today, Max was a painting making machine.  It was our last visit with his therapist, until we can sort out how to pay for her to come privately, since the agency paying for her to come has ended services.  She was happy to get such an excited and happy Max to work with today.  
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He was very intentional with his brush strokes today.  He even dipped his paintbrush in the colors he wanted.  He just needed a little help holding the brush and his arm so he would have better control.  

This was his first masterpiece, for his Auntie Angie.  
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She thinks it looks like a phoenix.  He said it was fall leaves.  I see both.

Max was happy to show off his art to Aunt Connie, and Daddy.  His next work of art was for a surprise someone...we'll have to share that later.  Then he made a painting for Aunt Connie. 
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He made such little precise movements with his brush for the purple.  It was like we were watching a master artist at work.  We were all quiet so he could do his work. 
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He did another surprise piece, and then he had work to do.  Serious work.  He asked for a pencil, and got right down to it. 
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He told me with his talker, "My work."  Then got into his PEOPLE category and went to his teacher's name and told me to show her.  He had one more piece to work on, but needed some music, and asked for J, Jack...which means Jack Johnson when it comes to music.  

We turned on his groovy tunes and Jack Johnson started singing, 

I can change the world
With my own two hands
Make a better place
With my own two hands
Make a kinder place

With my own
With my own 

Two hands


As the song played, Max danced and went into a place with his art.  Singing, and drawing, and dancing. When the song ended, he said "again, again"...and since Pandora.com only plays a song once and moves on, I had to scramble to find it on youtube to play quickly again.  I found it, and it played two more times before his masterpiece was done.  Sometimes a soundtrack to life comes at the right moment, and it just fits. 

This is his final masterpiece, made with his own two hands.
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When art was finished, and everyone left, Max had another nap.  This time, George lay by him to keep him company. 
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It was truly the most productive day I've experience with Max in a very long time.  We may not ever get to the point where Max is not dependent on drugs to survive.  That's sometimes hard to come to grips with, hence the last post.  But, when we get to see our son in a whole new light...when the drugs work, it's all a little bit like a "pinch me" situation.  I am hopeful he continues on this path of good rest, and good work and play.  I can't even begin to imagine what all we'll see from him if he does. 



5 comments:

Junior said...

Max your artwork is awesome, great job.

Kristina said...

This post makes me sooooo happy! Way to go, Max!

Did you know that there is a way to input music into the Eco2 and he could get into it and play whatever he wants. I know lots of kids do that, but we don't know our Eco2 enough yet to figure it out and Emma is still pretty little. There is a Facebook group of parents whose children use Minspeak (Eco2 mostly with Eyegaze) and we are learning from each other but the parents are really far ahead of me on the learning curve and are a wealth of information. If you want to join, friend me on Facebook (Kristina Sheedy White) and I'll add you to the group. I don't know how to invite you without having you as a friend.

Elizabeth said...

I'm so glad to hear that Max is responding so well to the medication. I hope it lasts and lasts with minimal side effects!

Vijay said...

so glad to read this. i deactivated facebook few days ago. i hope you post here regularly so i can catch up news about you all. Hugs. (Vijay)

Jennifer Tucker said...

It's great to see how well he is doing. God bless.