Saturday, February 18, 2017

Teens Text...

In school today, Max told me "look at me." I was on my phone texting Steve and when I told him I was talking to Daddy he said "why can't I?"  I told him if he would tell me what he wanted to say to Daddy I would help him text Daddy from his iPad.  I blurred out some about location and time, but you can get the idea.

(The panda was sticking his tongue out and laughing.  Max chose it out of all the Kung-Fu Panda choices)

He read a book about Abraham Lincoln, and didn't feel like doing much else...and was insistent on telling his teacher how everything she offered was boring.  This is his difficult week with his mood. He will get another injection on Friday of the testosterone and his mood will be better.  And even though he didn't want to do what his teacher had planned, he did a good job of telling her why instead of just crying and throwing a fit.

Steve was trying to get him to be helpful for me, because he spent most of his school time asking about Daddy.  His teacher was great in turning his attention from being sad and missing Daddy to asking Max what he thinks Daddy does when he goes to work.  He answered dad goes out of the house works with officers and he thinks it stinks.  Pretty much how it goes.

**I'm posting this a few days late because I don't post when Steve is out of town.  Now he's back and Max is happy again.

Sunday, February 12, 2017

Spelling with Max...

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.

At this point Max got angry and started crying and yelling.  Again, this falls down to his not being able to express exactly all he wants in a way we immediately understand. We worked on trying to figure out what was upsetting him and he finally got around to asking why he couldn't do it.  He wanted to write it in his book.  He also wanted to sign his name.

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 
of course

When he spelled H P E,  I asked if that meant happy and he said no. I asked him if it meant hope and he said yes.

He wanted to write it out as well.  Look at all those M's!

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.

Tuesday, February 7, 2017

Music is the only way to me...

Max has had a great couple of days with school and therapy.

Yesterday in speech therapy, he started right off telling Robby he wanted to "only listen to music" "I want a musical instrument" "singing"
When Robby asked him what kind of music he wanted, he told him "opera" "opera" "opera".

I put on one of Max's favorite songs Pavarotti sings O Sole Mio, and Max was all smiles.  When Robby asked him how it made him feel, Max said "green".  Max has been using colors to describe his feelings quite a lot lately.  We asked what green meant and he said "little more happy".  He then listened to this song from La Boheme, and Robby asked how it made him feel.

He said "small boy" u understand?" "green".

We asked more questions and he said these songs remind him of being small, and that was a happy memory.

When asked how opera makes him feel, he said "darkest green", but he had a hard time explaining it, so said "mom, you feel?"  I told him opera made me feel relaxed and happy.  He said "yes, mine."

Robby also asked him how Pavarotti makes him feel.  Pavarotti has always been his favorite.  Max answered "great things but he saw pain epic poem" "yellow happiest period. "

"Music is the only way to me." 

After therapy, Max spent the rest of his day listening to opera.  His love for opera has certainly be a constant throughout his life.  It's just so awesome to start to understand how it moves him so much.