What we've got here is a failure to communicate

Max loves to sing and play the piano. He can read pretty well, too.

But Max isn't a talker. It's not that he can't talk at all, he just doesn't do it much. It doesn't come easily to him, and he has to be pretty motivated to do it. I swear, over 90% of  his speech has to do with eating.

For the most part I think we manage in our own way, but last week I was really feeling the limits of our communication. Max was not having a good time at school. It started out okay, but as the week wore on he seemed less and less enthused. The daily schedule sent home started out with the usual smiley faces drawn in, but soon there were more of these :-I faces, especially toward the end of the day. The phrase, "Could do better." was used... more than once.

He even gave them trouble on the school bus, which he normally loves. It didn't occur to me that he might be sick. He was eating okay, and other than being a little extra snuggly, he seemed fine at home.

I tried to talk to him about it with no luck. I wasn't expecting an answer but I had to try.

Then on Friday evening he came down with a pretty nasty stomach bug. He seems much better today, but I'm still on the fence as to whether I will send him to school tomorrow or not.

So the question in my mind is, is his moodiness related to his stomach bug, is he just having the post-holidays blahs, or is it something else altogether?

I just wish I knew.

I wear my sunglasses on Christmas...

It's been a while since I have posted a blog entry. If I did new year's resolutions, blogging more regularly would definitely make the list.

We had Christmas dinner at my nana's nursing home. I wasn't sure they would have anything Max would eat there, so I packed some food from home. As it it turned out they had mac & cheese and Max ended up eating better than his baby brother, who was both bored and tired.

I haven't quite adjusted to the fact that Max has been much less rigid about food these days. He's still pretty picky, but anyplace we go there is always something on the kids menu he will eat. Just yesterday he ate pineapple at school, something that was a favorite of his as a toddler but he hasn't touched in years.

If anybody was the problem on Christmas, it was me. I ended up hunched over my plate wearing dark glasses. I didn't even touch my food. I'm certain everyone at the nursing home thought I was hungover, but the boring truth is I woke up Christmas morning with a migraine and as the day went on, it just got worse. I had meant to take all kinds of pictures and basically ended up spending the day just trying to hold myself together and not be too much of a little dark rain cloud.

Christmas break went pretty well even if the day itself could have gone better for me. Max has had a hard time with days off from school, but other than a little cabin fever he did great. He also seemed to need less time adjusting to his new toys than in past years.

Sam is feeling a little post holiday let down. He's been a bit moody and keeps asking when Santa is coming back. He is also a little ticked off that we still have snow even though Christmas is over. Personally, I think he has a point, but the weather doesn't listen to me.

I'm not sure if it will make things better or worse when I take the tree down.

We'll see...

Max: The Piano Man

I knew Max loved the piano, and could play a little. At the end of the last school year, the music teacher sent a letter home. In it she listed at least three children's song Max could play by ear.

And he has his own keyboard at home. Inspired by the letter the music teacher sent, his Grandmama Gayle and Grandpa Fred bought him one for his seventh birthday. Not counting the days that he couldn't because we weren't home, I don't think he has gone so much as day without him playing. He plays it off and on all day long.

Let me tell you something... all day long is a long time.

I figured out pretty quickly that all that nonstop tickling of the ivories was going to drive me to drink, and since I don't usually keep booze in the house, that could be a problem. I quickly purchased a sturdy pair of headphones for Max's keyboard.

Now we cut ahead a few months in our story. We went on a trip to stay with Fred and Gayle for a week in Virginia over Thanksgiving.

Fred and Gayle do not have a keyboard, but they do have an upright piano.

The first thing Max did when we got there was to set himself down at the piano and start playing. Right away I noticed he was playing snippets of songs I could recognize, and even when I couldn't recognize anything, his playing sounded very musical to my untrained ear. Not so much a kid messing around on a piano, but like someone improvising. Like he knew what he was doing, and I'm not the only one who thought so.

On the second day of our stay I sat down next to Max on the piano bench and said, "Look what Mama can do!" and I played 'Mary had a Little Lamb. Badly. Using one finger.

Max looked out of the corner of his eye at me, gave me a tiny little half smile, and started playing Mary Had a Little Lamb. But not like I did. Not only did he use more than one finger, he used both hands. He was playing chords. He was playing with gusto. Then he broke into Jingle Bells. After that came The Battle Hymn of The Republic.

And all the while he was watching me out of the corner of his eye. With that little smile on his face.

"See what I'm doing?" he seemed to be saying with that smile. "This is music."

Over the next few days he went on to play quite a few songs. Some of them he played most or even all of the way through. Others he just played snippets of, and a few he was obviously trying to work out.
Here is a partial list of the songs he played. Some he only part part of, others a all or most of the way through.

Battle Hymn of Republic
Chopsticks
Defying Gravity from Wicked
Jingle Bells
Little Brown Jug
Mary Had a Little Lamb
Nutcracker-various themes
Over the River and Through the Woods
Princess and the Frog (3 songs)
Turkey in the Straw
When The Saints Go Marching In

I've always said the best way to get through to Max is with music. I noticed when he was quite young that I could get him to answer me more often by singing questions, rather then by simply asking. He still isn't much of a talker, but he sings all the time. He could sing Taylor Swift's Love Story all the way through after hearing on the radio once.

So I knew Max had a special connection to music, but it seems I didn't know the half of it. Or it least, not the depth of it.

Penny On!

I've heard a joke few times that goes something like this, "Everybody has a purpose in life. Yours might just be to serve as a cautionary tale."

Sometimes I feel like my purpose in life is to provide comic relief. I'm clumsy, I can be forgetful, and I'm great at missing the point of a joke. I also manged to show up for Max's parent-teacher conference a little early.... Okay, make that an entire week early. And I did it on the day of a record low pressure windstorm.

It wasn't a complete loss though, I got to meet some of the other  people who work with Max at school. It's always great to see how much they enjoy be working with Max and how much they like him. They were really nice about my mistake, and nobody mentioned it on the day of the actual meeting.

I suppose I was a more than a little nervous about the meeting. At the IEP  last year a lot of questions were asked about how to reach Max. I told them music and reading seemed to be his strengths. I said he loves computers. But I felt like they wanted more answers than I could give them. When the autism coordinator showed up for the meeting she had a lot of ideas, but I felt a little like I was letting people down.

Tuesday's meeting was very different. His regular teacher and the speech teacher were very excited to see me. They both said he is much more focused than last year, and needs far fewer breaks to get through a day. His schedule this year is more intense and keeps him much busier, and he is rising to the task.

They are using a penny chart with Max. It has five pennies and put velcro on the backs. He has to get five pennies on the chart and then he gets a small reward.

The speech teacher showed me a video of him him working on a computer and reading sentences with her. They said he hadn't been having a great day when they filmed it, and he did need some prompting, but it was still impressive to me.

When he finished a task, he would even say, "Penny on!" to remind them.

I have noticed Max has been coming home from school as something of whirling dervish. Sometimes he has been having a hard time sitting still enough to get through dinner. I wonder if this isn't a result of him staying on task better at school. Perhaps when he gets home he just needs to let it all out.

There has also been some backsliding with potty training, both at home and at school, but that isn't uncommon in kids with autism. His teacher said she would make a "first, then' chart for Max to take home. It will have symbols on that will let Max know what he gets to do after he uses the potty. I'm also thinking of how to make a penny chart of my own.

The biggest difference I see between the meeting last year and this year is we all have a much better idea of how to engage Max.  A lot  less, "How do we do do this?" and a lot more, "This is what we are doing. This is what is working."

The future, of course, remains uncertain. There is no telling how far Max will go, but we can see a way into his world now, and that fills me with hope.

Halloween

I've had pumpkins on the front step for a while, but yesterday I started putting out the decorations for Halloween. 

Max got so excited he ran to next door to go trick-or-treating, but thankfully he didn't get upset when I explained it wasn't Halloween just yet. He laughed in a way that seemed to say, "Oh, silly me!"

I've always loved Halloween, so I feel pretty lucky that Max loves it, too. I know that isn't always the case for kids with autism related disorders. The costumes and all the people can be pretty overwhelming. I do try to prepare him every year with Halloween videos and specials, but for the most part it's been a non-issue with him.

Max has fun, but doesn't seem to have strong opinions on costumes. This year I picked out a Starfleet uniform and he seemed happy with that when he tried it on.

I do make it a point to pick out costumes he'll both like and recognize. I also look for comfortable things that don't need a hat or a mask. If they can double as play clothes later, that's a huge bonus. 


I use similar guidelines picking out for costumes for both my sons, the only real difference being Sam can and will wear hats.

I think the part Max actually likes best about Halloween, apart from the holiday specials and songs, is trick-or-treating. Even before he had a diagnosis, I would joke that trick-or-treating was socializing at the 'speed of Max.' 

You go up to a house, you say "trick-or-treat" (or not) get something in your bag. No pressure and it's pretty straight-forward.

His three year old brother, Sammy, has strong opinions about costumes. Last he year he wanted to be a doctor AND a firefighter. He ended up being a doctor for the mall and grocery store events and a firefighter for going trick-or-treating door-to-door. 

He's already picked out a football uniform this year and I am holding firm on not getting costume. If he wants to wear his fireman costume from last year to something, that's fine, but I am not buying anything new.

The scary aspect of Halloween had Sammy a little worried, but I think he is handling it fine.

Last night he wanted to pretend we were camping in the snakey woods, so we sat on the couch  with a blanket and called it our tent.

I hooted like an owl and asked him what that was, and he said, "Don't be scared. It's just an owl." 

I growled and he said, "That's just a cat." 

This went on for a while with me doing different animal noises until I threw back my head and howled.

He patted me on the arm and said, "Don't worry, Mama. It's just a werewolf."

The Tortuga Twins (& Max) Go Crazy!

Max waiting to watch The Tortuga Twins

Over the weekend we went to the Minnesota Renaissance Festival.  We all had a great time, which was not a surprise. We've been there before and always had fun. Sammy's favorite part was going on a butterfly ride. 

Max really loved the Tortuga Twins. Their act has a lot of audience participation and Max had so much fun with it. I was really impressed by his level of engagement with the show. He howled like a wolf, cheered, and even yelled, "Heck, no!" on cue. For a kid with autism, I think that's pretty awesome.

During the swordfighting part he tried to rush the stage to save Scaramouche, one of the twins, but he calmed down pretty quickly when I explained they are all friends and just being silly.

Scaramouche told the other guys they better be careful or his little bodyguard would get them. Afterward he thanked Max and even recognized him the next day and thanked him again. 

Their act IS bawdy, and gets more so as the day goes on, but Max loved it so much I had to bring him back. He's still talking about it and saying, "Tortuga Twins Go Crazy!"

Thankfully he has only said, "Get naked!" a couple of times, and not at all at school. ;-)


*knock on wood* 

Wordless Wednesday

Max, Sam & their cousin Allison dressed up the the Minnesota Renaissance Festival