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

You're Wrong!

Max has starting arguing with me! For instance last night we were out of lemonade, but he was convinced we had some left.

The conversation went something like this, although the "You're wrong!" part may have gone on longer than written here. It sure felt like it. ;)

Max: Want lemonade.

Me: The lemonade is all gone. We have apple juice and milk.

Max: No. Lemonade.

Me: The lemonade is all gone.

Max: You're wrong!

Me: Okay, then show me the lemonade in the fridge.

Max: There!

Me: Sorry, no. That's lemon juice. You wouldn't like it. It's not sweet.

Max: Lemonade!

Me: It's lemon juice.

Max. You're wrong!

Me: No, I'm not.

Max: You're wrong!

Me: It's not lemonade.

Max: You're wrong!

Me: Read it.

Max:  Lemon Juice! oh no!

Me: How about an icee pop instead? I think we have lemon icee pop.

Max: Please, icee!

Okay, so we aren't discussing world peace, but that was a conversation, right? I mean there was real back and forth. Right? I was also impressed he didn't just cry or scream or throw himself to the ground. He was very upset, but he kept talking to me, which is pretty awesome, I think.

Finding Hope Where You Can

A few days ago, when I was at  the grocery store, I overheard a woman talking, and I just froze.  She wasn't doing anything weird to draw my attention. She was just telling excitedly a clerk about the great day she had.

But there was something about about her voice, the way she moved. The way she kept moving her hands. It was like I knew her.

And every so often, usually when she was making a point, she stopped to look at the clerk out of the corner of her eye and give her a little half smile.

And just for that second... she looked just like Max.

Most of the time when Max smiles at me, he gives me that exact same side glance and sweet little smile. She moved just like Max, too. And her oh-so-familiar voice? I realized it sounded eerily similar to Temple Grandin's.

If you'd have asked me right then, I'd have bet anything she was on the autism spectrum. I'm still pretty sure she was, although I admit I'm not any kind of expert or anything. I could be wrong.

So here I am at the grocery store, staring at a women I've never met.

Just days after I complained about people staring at my son.

Hello hypocrisy. How are you doing? Me? I'm okay.

Still... I had such a hard time looking away. I was transfixed by her.  She went boating and watched baseball. She had friends that she talked about. Most of all, she just seemed so happy.

I've heard it said before, "When you've met one person with autism, you've met one person with autism." and I know that's true. 

Even knowing that, in that moment, I couldn't help be look at her and, think "Maybe someday Max will talk to me like that."

Not just the short declarative sentences that, don't get me wrong, I feel lucky to get, but really talk to me. 

I felt renewed hope that maybe one day, when Max has an awesome day, I won't have to read a note someone else wrote to learn about it. I felt hope that maybe one day, he will tell me himself. 

wordless wednesday

Thankful Thursday

I'm thankful my in-laws recently visited the boys and me in Minnesota.

I'm thankful how they made me feel truly welcomed into their family from the first day we met.

I'm thankful they have never made me feel like any less a member of their family after my husband and I separated close to two years ago.

Most of all I'm thankful they love both my children, just as they are.

wordless wednesday

Why My Kid is on a Leash

People seem to be sharply divided on the idea of kids on leashes, or in a 'safety vest' as I prefer to call my son's. People seem to either love the idea, or think it means you are a failure of a parent who has no control of their child, and no respect for their dignity.

Thankfully I've only run into the, "You must be a horrible parent" camp online. In person I've only heard supportive comments on it. I've even had people who approached me simply to ask where I purchased it. 

Lately Max has been wearing his vest to almost anyplace I know will be busy and crowded. It's bright orange. On the back is a patch that says, "I'm not ignoring you I have autism." On the front I have written in sharpie, "Please be patient I have autism." It has a zippered pocket in which I have put a card with my contact information on it. And it has a strap I can attach and hold onto in case he tries to run off. I don't like to call it a leash. It doesn't work like that. It keeps him close but doesn't guide him.

There are two major reasons he wears it.

The first and foremost is that Max, like many kids with autism, poses a serious risk of "elopement."

To me that makes it sound like he is going to take off for Las Vegas with a woman he barely knows. But what it really means is that sometimes he will wander off. Or he'll take off running, a big grin on his face heedless, to everything around him. You take you eyes off him for a second and he is long gone. I still need to watch him like a hawk in it, but the vest is a little extra safety measure.

He won't always hold my hand. He still rides in a stroller much of the time. I think he feels secure in it. He seems to tire faster than my younger son when walking, but I want to give him the opportunity to walk when he wants to.

The other reason is maybe more for my benefit than his.

The older Max gets, the more obvious his differences become. What could pass for typical on a three or even a five year does not look quite so average on a seven year old. Even the sight of him riding quietly in a stroller while his younger brother walks is starting to attract looks.

More and more I find people giving him nervous sideways glances and then looking at me with questions in their eyes, or even worse, hard cold judgement. Sometimes people just outright stare, not even bothering to hide it. I never know what to do. Do I start explaining before they even speak to me? Do I wait for the questions that might never come? Do I ignore them? 

The vest provides a shortcut, explains for me.

Here is a picture of the vest without the strap connected, for the curious.

So what's the point to this post?

Only this: If you see a parent out doing something you never would, such as have their kid on a leash, or pushing a kid you think is way too big in a stroller, just try to remember, there is more than one way to be a good parent. 

Or maybe if their child is acting in a way that you you think is much to young for their age, or maybe just in a way that seems weird to you, there may be a reason. Before you rush to judgement, maybe take a moment and think, there could be far more to the story than you know.

Oh, and don't stare. I shouldn't have to tell you this, but staring is rude.

Thankful Thursday (One Day Late)

I love watching Sam and his cousin Allison play together.

They play school. They play race cars. They play family.

They run around in circles holding hands and laughing.

They have big dramatic fights and then make up.

They are best friends, and for this I am thankful.

A Picture and a Story from Sammy

Sammy: "I'm gonna tell you a story. That's you and me, Mama. That time we goed in the rocket ship all the way up to the moon.. There were stars. And then we comed back to earth."

Me: "That sounds like fun."

Sammy. "It really was."

And now for my Wordless Wednesday post:

Being the Big Brother

We went to Pine Grove Zoo yesterday. It was the perfect day for it, warm but not too warm. We set out early hoping more of the animals would be awake.

Sam tried feeding the goats at the petting zoo, but only ended up feeding one. He said it was too tickley. I let them eat from my hand and he watched. And you know what? It was pretty tickley.  Sam really liked thus angora rabbit that never seemed to move. It was cute, like a anthropomorphized dust bunny.

Max didn't want anything to do with the goats. I was hoping he would try because he fed deer on a school field trip, but I didn't push it. .

Allison (my niece) fed them no problem!

I got Max to feed a white calf by putting the feed on the fence. The calf licked it all off the fence quite easily. Max thought that was funny until  the calf thanked him by licking him with his very long, very wet tongue. Max did not like that one bit! He stayed calm, but was done with the petting zoo after that. 

Sam and Allie loved the tortoises, but I'm not sure if Max even noticed them. The big cats were mostly asleep. The bobcats were a little more lively. Allie wanted to bring one home. I did my best to explain why they wouldn't make good pets. 

Max didn't seem all that interested in any of the animals... until we got to the bears! He said, "I can see the bears! Let's count them!" The baby bears were playing in the water, and chasing each other around, but Max spent just as much time looking in at the older, quieter bears in their enclosure.  He pranced from the baby bears to the grown up bears, and back again. He alternated between counting them and saying, "I can see the bears!"

Sam said the rabbit was his favorite animal, but his favorite part of the zoo was the red wagon.

The wagons the zoo had available to borrow looked just like the wagon we have at home. When Max saw them he climbed right in one. 

Sam and Allison grabbed the handle and started pulling the wagon. I figured they'd get tired of that pretty fast. 

Allie pulled for a while, but Sam never stopped. 

He pulled Max in that wagon from exhibit to exhibit the whole time. At first Sam didn't want me to help at all. In end he relented and let me help, but only uphill. We got some odd looks. I guess people were a little surprised to see a 3 year old pulling a 7 year old.

I  can already see, in small ways, Sam taking up the role of "Big Brother" to Max..

I can also see the beginning of a balancing act. Sam seems proud and happy that he can help Max, but I don't want Sam to grow up feeling burdened by his big brother.

And I love it when they act 'like brothers' even if it isn't in the most typical of ways. 

Because above all else, brothers is what they are.

wordless wednesday

Max on the Ipad

Recently Max has begun using Proloquo2go, an assistive communication program. It has a combinations of symbols words that Max can press to "speak."

While he hasn't been as conversational on the ipad as I might have hoped, he does like to ask for food! Grilled cheese, baked beans and pop tarts are favorites.

He has also let me know he feels crazy/bad/frustrated when he can't have what he wants!

Max has even gained use of some more 'functional' type phrases in his spoken vocabulary. In the past he has let me know he wanted something to drink by saying, "You want apple juice," for example or even "You are thirsty." Then over time he started asking what he wanted by just stating what he wanted, "Apple juice" or "Thirsty." In a way I think that was actually a step forward. Rather than repeating the whole thing in a rote manner, he was using the 'meaningful' part of the sentence.

Since using proloquo2go I have noticed the words "I want" and "I need" entering his spoken vocabulary more and more. As in "I want apple juice." or "I need squeezes." On a few occasions "I feel" has even shown up. On the day I picked him up from summer school to go to the county fair, he kept saying, "I feel happy. So happy."

In a way I think proloquo2go is making Max's echolalia* work for him.

Pretty cool, I think.

(Echolalia is speech consisting of repeating or ”echoing” what you have heard.)

There is so much you can learn, When you’re on a pachyderm!

Long before Max had a diagnosis of autism, I came to the realization that he was far more impulsive than other kids his age. He also has a very poor sense of danger. The idea of putting him on a carnival ride by himself, even the slowest moving of 'kiddie' rides fills me with dread. 

But Max is seven now, and he has never once tried to leave a carousel early. So yesterday at the county fair, after he picked out his elephant, I stood off to the side and watched. Just like all the other parents. 

Okay, I'll admit I was maybe a titch more nervous than the other parents. After all, I was the only one yelling, "Hold on to the bar! Hold on tight! Don't let go! Hold on!" 

Max on the other hand was blissfully relaxed and had no problem staying on the ride. In fact he took a little extra coaxing to get him OFF the his trusty mount. I think he would have happily stayed there all day if he could have.

And although he didn't tell me with words, the look on his face told me how happy and proud he was to ride by himself, without mama hovering.


He told the elephant it that it was a good elephant. A nice elephant..

I guess the lesson for me is that while Max does need extra watching over compared to many seven year olds, I still  need to pick my moments to allow him his independence and watch him shine.

He needs it, and what's more is, I need it too.