Tuesday, June 20, 2017

Across The Universe...

Max had speech therapy today. While he had lots to say, this exchange I want to share was especially moving to me.  I asked him if I could put it on his blog and he said, yes. He and his speech therapist, Robby, have been working on similes and hyperbole by listening to the lyrics of The Beatles.  It's no secret that Max loves music, and he's been fond of The Beatles for a while.  But it's been pretty recent that he's really been interested in the lyrics of their songs.  He has said Blackbird is a song about "people like me" and Eleanor Rigby is "spooky." So, I was looking forward to hearing what he thought of the new song Robby was introducing him to today, Across the Universe.  If you need reminding, I've linked the video of the song below.  

When they got to this verse, Max started talking with his computer. 

Sounds of laughter shades of life are ringing
Through my open ears inciting and inviting me
Limitless undying love which shines around me like a million suns
And calls me on and on across the universe
I will break it up by how he actually selected his words.  It will look like one long string in the pictures, but it happened over about ten minutes.

He said, "Who had come to take my life. period."

Robby and I both asked him to explain more of what he was saying with that sentence and he said "dead."

Hmm, okay.  Robby told him that was interesting and he could see how the song made him think of floating through the universe and that can be a way to describe death.

Then Max said, "Where Nonni? Nonni dead. Gone to the universe period."

I tried my best to not choke up and told him he was right.  Nonni (Max's Grandma, my mom) was dead and I liked that he was thinking of her in the universe.

He said, "Nonni I have a question. Can I ask you something? I feel I feel feel upset sad."

At this point I was crying.  I felt sad and upset too. Robby was great to step in and talk with Max about how it was good to talk about his feelings and how it's nice to remember the people we miss and sometimes music can help with that.

Max said, "dark forward from not to see her."

I tried again to talk and just couldn't find the words.  It has been dark going forward without her.  She was such a bright light in our lives.  It was this time of year two years ago when she came to live her last two months with us, and it seems to have hit me harder this year than it did last year with all the memories of that time.  I was just so taken aback that he noticed. That he remembered too.

Then he said, "All my life was interest."  Through my tears, I told him he was right.  She was always interested in his life. She was his biggest fan, always cheering him on.

He finished by saying, "I sad."

Throughout the whole exchange, he was never upset or crying.  He was even smiling at some points. He just wanted to talk about how he felt.  The song made him think of his Nonni, and he wanted to let us know.

He and Robby moved on to other topics and I dried my eyes as they joked around. I was amazed at how deeply he could express himself, when it so often just spills out of me as tears. Max hasn't talked about his Nonni as often lately. August will be two years since she passed away.  I am grateful that he doesn't remember her sick, and at the same time it makes my heart ache to know he misses her.

When Robby left, I asked Max if he wanted to listen to the song again and I would tell him the words. He said yes, and we listened together.  I asked him if he had any other thoughts about it and he said, "Nonni I love you."

At this point, I didn't hold my tears in for him.  I told him she loved him too, and she would be very proud of him, and was always very proud of him. And he could talk to her in the universe any time he wanted to.  

That seemed to be enough for him.  He smiled and was ready to get out of his chair.  I gave him some extra cuddles and kisses.  He's such a very special boy, with such a very special heart with lots of love for his Nonni across the universe. 

Tuesday, May 23, 2017

Farewell, 7th grade...

Today was Max's last day of 7th grade.  He's had a good year, mostly because he's decided to be such a rockstar with his talker.  He has shown a level of intelligence this year that we had no idea was inside of him.  Maybe we knew, but we didn't know how to get it out.  And he waited patiently until we figured it out with him.  At the beginning of 7th grade, he was just learning the new placement of his switches and hadn't started the medicine to bring in his focus yet.  His moods were all over the place and he hadn't yet started talking about his feelings to let us know why he was getting so upset. It's been a big year for him.
Max's first day of 7th grade.
While the first day of 7th grade started with smiles and excitement.  The last day of 7th grade ended abruptly in tears because of a terrible headache Max had.
Last day of 7th grade. 

As soon as I got him in his chair he started crying and trying to get out.  Thankfully, Robby made him a headache page so he could tell me what was bothering him.  He wanted me to turn off the lights, take off his glasses and get him to his dark cold room.  I asked him if he could finish school first and he said no.

We had his teacher open her end of school gift from him and then he was off to bed, where he still is listening to his quiet music in the cold and dark.  He will get to have extended school year (summer school) starting in a few weeks, and hopefully less headaches by then.  But for now, some relaxation for this big guy.  Fare thee well, 7th grade!

Relaxing in his cold, dark room.

Monday, May 22, 2017

DJ Max...

In speech therapy today, Max got to listen to Robby's Beatles records.  They are working on figurative speech and this encouraged Max to work on similes.  Robby let him choose the songs, and then asked him to come up with some similes about the songs. 

We know this is his all time favorite Beatles tune, and as soon as it started playing he said "awesome, good." He goes on to describe it.
Eleanor Rigby 
Old Woman
Smooth as the other fog that aelinor 

We asked if Eleanor was as smooth as the fog, and he said yes.  Give the song a listen and tell me he doesn't get it dead on with that description.  It plays like a thick fog rolling in.  

DJ Max next requested Blackbird, multiple times while Robby got the record to play.  It's not as fast as hitting play on his iPad! When he typed "blackird want like " - he was asking for Blackbird to be put on.

dark night
like smooth 
kissing her boy
 with bird kiss

Blackbird is a such a special song.  When he was a baby, we were visiting with his Dr. L. and he played him Blackbird on his guitar.  I had never thought the words so deeply until then.  It became his fight song in the darkest times of his earliest days.  "Take these broken wings and learn to fly.  All your life you were only waiting for this moment to arise." 

I don't know who the "her" is Max was talking about, but the boy is him.  He is always the boy in his stories. 
Maybe the night is kissing him.  Maybe Blackbird is kissing him.  Maybe he remembers being rocked to this song, with kisses of hope for better days where he would be free. Whichever it may be, his words struck me as some of the most poetic words I've heard from him. 

After Blackbird, they listened to Robby's favorite song, Rocky Raccoon. I can't find an original of Rocky Raccoon by The Beatles on Youtube, so Max told me I could share this one from his favorite guy, Jack, singing it. 

Max told him he liked it and it is "fun to sing betles"

(The Beatles)

Kings of my music

I think Max and Robby may have found their favorite way to bond.  They both could spend hours for weeks and months ahead listening to The Beatles music together.  And I so look forward to hearing what he has to say about their music.