In the first few years of Max's life, his neurologist would ask us to keep track of how many words Max knew. This was a way to measure his cognition. As he got older, we didn't have to keep such close tabs because he knows thousands of words. His limitations are always tied to not being able to express himself in a way we understand it. The limitations always fall on us not being able to understand what he's saying with his voice, not that he isn't expressing himself.
We have been working a lot with him on expressing himself so we can better understand him, by using his AAC device more. Max does what is called step scanning with his talker computer. This means he scrolls through the choices of words in his talker with one button switch, and then once he hears the choice he wants selects it with a second switch. He does this quicker than most teenagers text. He's so quick with his scrolling, scanning and selecting, often times his talker gets hung up and doesn't respond quickly enough.
Lately he has been talking up a storm! Most of the time I can't even get a photo of what he's said before he clears his screen. Back in September, Max was started on a new medicine that is in very basic terms, supposed to "dial in" the static in his brain, like a radio tuner. That's how his doctor explained it to us. Since starting it, we have seen an increase in Max's attention span in school. We have seen him communicate more effectively. And he is overall more expressive.
I wanted to share his latest assignment in school because it really highlights how much he's talking and getting his thoughts across lately. He's been learning about Black History Month this month. His teacher has been teaching him about some of the African Americans who shaped our history. Max watches videos about them, and they read books. Then Max says tells her what he would like to put in the book he's making for Black History Month.
They started with Louis Armstrong. This was one I didn't get a picture of before he cleared it away. He listened to some of his music and said he liked it, and said he was loud.
Next was Frederick Douglas. Max watched a video about Frederick Douglas and the takeaway for him was that he was an author. His teacher asked Max if he would spell his words in his ABC page, instead of his usual choosing the words already programmed into his talker in the word list.
Max's teacher has been working with his "inventive spelling." This is the type of incorrect or unusual spelling used when children are just learning to spell. Max sounded out Frederick and in his ABC page spelled F E D R I K.
From there he wrote R I T E for write. And his words auto-predicted book so he took that shortcut.
Once he was able to write it himself, he was much better. Although, he did call his teacher "mean" for making him "work."
He made very small concentrated writing in his book, and then added "I said he would have been cools." He made that sentence with his auto-prediction words.
He was exhausted after this effort and wasn't too thrilled with his teacher pushing him. We were thrilled with her, and so excited that Max wrote his first sentence by himself. "Fedrik rite books."
The next person for him to learn about was Barack Obama. He watched a couple videos, including one where kids were asking President Obama questions. Max decided he wanted to ask a question of him too for his book. He wrote what he wanted to write first, and started by signing his name by himself. Max needs support to hold his hand steady, but he makes all the movements himself. His name is really the only legible word he writes, and he does it so well!
I was also unable to get all the pictures of his talker screen because I was busy as a helping hand, but this was how his page turned out. This one really highlights how Max often puts words in a sentence. And also how he uses different words to try to get his point across.
He asked "Eat pizza you like" - very Yoda-like. Then he said "Best down the game and that is that"
We had to ask for more clarification on the "best down the game" part of his sentence and he said he was the first and best. I asked if that meant he thought he was the best president and he said yes.
He added "Friendship", because well, he wants to be his friend. He also drew him a pizza.
He was on a roll and decided to do his Martin Luther King, Jr. page. On this page he was very concentrated and knew exactly what he wanted to say. His teacher and I were hardly making a sound because he was so focused on what he wanted to say. He worked in his ABC page, and found the words he wanted to use in the "word list" up top.
We have a man who was not bad
King really a great job to his life
Was so much of an important role of my life
Since he spelled hope, his teacher asked if he wanted to try to spell a few of his favorite character names. She started with PANDA because he likes Kung-fu Panda. He spelled it P A D A. The next one was ROBIN HOOD. His inventive spelling here was really interesting!
W O V I N for ROBIN and H U D for HOOD.
His next one was BATMAN. B A T I M A I N - that's a few extra letters, but it works.
He even was full of jokes to his aunty. He has always had a silly joke with her that she is stinky. So naturally, this was what he had to say to her.
It cracked us all up. He is such a 13 year old boy. Such a smart, thoughtful, hilarious boy.