Max has had a few easy days, as far as his work goes. Today, he was back on schedule, so he had to work hard!
We started with school video chat. His friend read him three books, then it was time to listen with the whole class while their teacher read aloud.
At first, I thought he might feel like sleeping through the time with his class, but once his classmate started reading, he pepped right up and was engaged.
I took the time to step away from the computer and do some housework. He didn't like that I was making noise in the kitchen, and promptly told me about it!
Of course, I get responses like that. Daddy, on the other hand, gets lovely calls for playing all day long.
Once he was done with his class he had this to say:
"we mysteriously disappeared" ... such a clever boy. I told him he was going to see his classmates tomorrow.
At noon, it was time for music therapy. I used Ms. Laura as a bargaining chip last night when Max was just too wide awake to sleep for me. I finally said we were going to have to cancel music if he didn't go to sleep, because he would be too tired for music time. He rolled over, said "Wahwuh" (for Laura) and went to sleep.
You can imagine his confusion then, when his PT Betsy got here first. Today, they were doing a co-treat time so we could work on different positioning ideas during music. All was fine once Laura got here and Max got to play music while doing all the hard work of PT.
He started with stretching his arms above his head. Something that he's not too fond of these days, for some reason. He usually cries when I try to stretch his arm above his head, so I have Betsy check to make sure something isn't out of place. We think he just doesn't like the sensation of pulling it gives, because he has full range of motion, he just doesn't want to stretch his arm.
Since Betsy was holding Max, while Laura played the guitar, I was able to get a different view of therapy, and get pictures too!
I noticed that as he was stretching and Laura was playing guitar that if she moved right above him, he would maybe feel more motivation to reach overhead to strum the guitar. Sure enough, he stopped crying while he stretched, and strummed the guitar looking upside-down! It's a position we'll work on regularly now!
I had to get this photo of them all on the floor playing. Look at those great ladies...they have such care for Max. Betsy commented on how she has never in over eight years seen Max tolerate this position so well as he did today playing his Q-Chord.
Then Max got to choose which instrument he wanted to play next...big drum was his choice, and to play it with his feet!
After big drum, he wanted to strum the guitar with his feet, all hands on for this one. I held his head up so he could watch, Betsy had his legs stabilized so he could strum with his toes, and Laura provided the actual musical talent!
He was so worn out from all his hard work, they ended music with a little head-piano duet. Max would lay for hours and play his piano with his head like this. He just rocks back and forth and plays music.
He snoozed a little while they were ending their time together, and I thought for sure he was going to sleep right through school which was to begin directly after music therapy. But, he really surprised me!
He listened very intently to two books, and answers most of the questions correctly.
Today was just an instruction day, meaning he didn't have any work to do, just answering questions with his computer. At the end of school time, before his teacher left he asked, "How about some homework?". She gave him the homework of reading the rest of his chapter book with me. And I will give him the homework of writing all his friends back. He got a lot of wonderful letters from his classmates, and it will take us some time to answer them all back, but he loves to write them, so he'll be happy to do it.
You know, I love to read about Max and all that he is doing. I'm a bit envious -- not just of his capabilities but also of what looks like a really effective team and program for him.
And on the flip side of that I could think of how great it would be if Max could walk like Sophie, or go to school like Sophie.
I know we all have our own sets of challenges. None are harder, and none are easier.
I guess what I'm saying is, I hear you, and know where you're coming from. And I'm glad you enjoy reading about Max. I so enjoy reading about your crew too!
What a great day for Max and for you, I too love reading about Max and the wonderful people who help. Thank you again for sharing his story with us xx
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