Saturday, July 31, 2010

Fuzzy Moon

At the end of our vacation week in Charlevoix is what I like to call the "Groundhog Day" portion. Just like that movie when Bill Murray keeps reliving the same day over and over again!  It is the same with the ending of Venetian.   It is the same every year! The kids love it, and I'm sure you can appreciate the fact that Daniel LOVES to do the exact same thing each and every year.  The Groundhog day part starts with the carnival on Thursday.  The good news from that fiasco was that Zachary went back later in the day with his cousins.  Daniel did go back on Friday with his dad for a while to get another chance and "finish" his carnival time.  He was very excited to do this.  I was not pleased that the 20 tickets they had to buy on Friday cost $5 MORE than the wrist bands on Thursday.  Carnivals are expensive! OYE!

Friday is the night of the first fireworks.  Yes I said first.  This is being written by a girl who does not enjoy fireworks or parades.  And this is all we do for two days!  LOL.  I try to keep my chin up, but each year, I'm finding that more difficult to do! I try to be a big girl, I know that it terms of problems, this isn't a very big one!   Friday night they are shot off over Lake Charlevoix.  That was a very very warm evening for northern Michigan and we were able to bring boys swim suits to the beach.  They swam until about 9:00 pm (in Michigan it stays light until 10:00 pm in the summer), so by the time they dried, changed and got settled in, it wasn't too long until the fireworks started.   Most people are surprised that Daniel loves fireworks.  My only thought is that the visual sensation way outweighs the loudness of the experience.  He actually does ok with loudness if he knows to expect it.  It's the surprise loudness that doesn't go very well.  He obviously knows that fireworks will be loud, so it's isn't a problem.  But he loves to yell and cheer for the beauty of the lights exploding in the sky!!

Saturday was the parade. It starts at 11:00 am.  Since this is small town Michigan, it is the same parade every year. Although this year it was a bit shorter.  This was also dampened by rain.  Daniel was tense during it, but had an umbrella and a chair for a front row seat (thanks to his Grandparents who bring chairs down early!)  I came right at 11:00 (delaying as long as possible!) and the rain was just starting, so I was able to grab a few umbrellas.  I took cover with Zachary who part way through looked at me with his big brown eyes and said "are you enjoying this?"  To which I could only answer in all honesty with "not really".  "Me either!" he replied. LOL.  I guess he inherited my anti parade gene?

The interesting thing came later that evening.  We were in the park by Round Lake again, waiting for the finale for Venetian week.  They have a boat parade after dark (so 10:15) the boats are decorated with lights and props and music and parade through the water in front of the park.  This, I must say is a better "parade" than the other!  While we were waiting Daniel looked up at the nearly full moon. It was sort of hazy behind a cloud.  He said "look the moon is kind of fuzzy".  Which he often says in this circumstance.  When we agreed he said.  "when we were watching fireworks in Charlevoix before  when the full moon was fuzzy"   (I knew exactly what he was talking about because he's talked of it before.  I believe it was the first experience he ever had going to fireworks)  Todd asked, "yea, how old were you?"  Daniel answered, "I was three".  Not very shocking, but he is right.  He was three years old.  I remember because we were at a different beach than we usually go to, and Zachary was an infant, which puts Daniel at 3.  It will never cease to amaze me the way he has information filed up there. 
"fuzzy moon" over Round Lake
 I can't even remember the other context, but when he brought up another vacation memory Todd asked "how old were you then?"  To which Daniel answered "I was 10".  And I can only say, I'm SURE he is right.  Some day I hope we can figure out or at least have a better incite into how his mind works!  It never ceases to amaze me!

Thursday, July 29, 2010

We Can't Control the Weather....

Our vacation continued with beautiful weather in Charlevoix.  We spent the next several days, going to the beach, taking boat rides, grilling amazingly fresh fish, and in the evenings heading downtown to listen to music in the open band shell in the park.  This is actually my favorite part of our weeks there.  It has the wonderful small town feel, it's relaxing and, well, sort of perfect. 
Daniel and I at the bandshell with Round Lake in the background

The boys anxiously await Thursday.  Thursday is THE day for them.  It is "arm band" day.  The carnival comes to town during this week of Venetian festival and Thursdays you can buy an arm band for $15 and ride as much as you want ALL DAY long.  It is highly anticipated, year in and year out.  The carnival starts setting up earlier in the week, of course, and there are regular "checks" on their progress.  Zachary and his cousins would ride down on their bikes and come back to report what rides where being put together.  "They have Crazy Dance again", they "don't have Gravitron! why not?!" It's ENDLESS.  As a parent I am not a fan of the carnival.  It usually means a hot day, in a small area, with way too many people amongst well, a carnival....I get it though.  I would have been the same way.  The positive is I don't have to RIDE (most of the time) and the kids can do it together. 

I have had several comments from those who have seen my pictures that they are surprised Daniel enjoys these rides.  I would be interested to know from other parents if their autistic children feel the same.  Daniel LOVES the spinning rides and roller coasters (as long as they don't go upside down).  As soon as they start something stimulates in his brain and he chats and laughs and talks the whole time.  It's the same as when he is swinging.  It's fascinating.

The day started ok.  It was a very cloudy day, not big white fluffy clouds, but grey fuller coverage.  This is ideal for ME in that it isn't so hot hanging at the dirty carnival all day, (especially since we had a very late adult night out the night before!) but for Daniel it means one thing THREAT OF RAIN.   He gets very agitated with this especially when there is something important (to him) going on.  His entire body is on high alert and concerned about the rain.  He talks about it and perseverates about it. all. day. long.  He asks "is it going to rain?" approximately 457,000 times.  Then usually answers himself with our standard parental answer, a whimsical sounding, "we can't control the weather......" .  This answer started coming from us years ago when he would be crying and screaming at us to "MAKE IT STOP RAINING!"  As exhausted, frustrated parents we would try to continue our good natured attitude with answers that invoke the feeling of "everythings ok", even when it clearly ISN'T.  We try to let him know things will happen again, and you can get another chance. It's a tough sell to someone on the spectrum. Although Daniel handled it very well the tubing day (see previous post).  That was raining all day, but you see, the difference is, he didn't know what he might be missing because he had never done it before.  In terms of the carnival, he looks forward to it ALL year.  He is still talking about "Arnold Amusements Inc" today.  (possibly the only child who takes that away from the day). 

We finally start walking down to the carnival with Daniel skipping ahead singing "Hi diddly dee, an actor's life for me".......Even if your child isn't obsessed with Pinocchio like mine, you might remember that song from the movie.  If so, you remember this is when Pinocchio is merrily headed off to school. . . right before disaster strikes.  ahhhh. foreshadowing.  I should have seen it.  But then "I can't control the weather" so what was I to do?  So I've given away where this is headed.  Cloud covered + high anticipation = disaster.  You got it. 

The four boys (Daniel, Zachary, and southern cousins Connor and Clayton) were enjoying the carnival.  They were riding The Tornado:

                                                                          Crazy Dance

and the classic Tilt a Whirl

And then I felt it.  A rain drop. Just one or two.  It was honestly barely spitting.  It wasn't enough to end anything.  The boys were back in line for The Tornado and the stress level was building. At least for Daniel and I.    I was trying to talk him down and it seemed to be working.  They got on the ride and one thing lead to another and Daniel was starting to freak out just as the ride was starting.  I was yelling for him to relax as he was screaming at the other 3 boys (for basically breathing wrong) and he was pounding on the ride.  I was giving my best even mom glare, imploring him to relax and enjoy the ride, begging him with my eyes to see that it was ok.  He was still riding.  Hoping he would magically see that the only thing ending his day was HIM.  But he was gone.  He'd gone over the edge.  I felt hopeless.  Daniel had slipped away and I couldn't get him back.  Every time he came around his eyes were locked on mine.  He knew it too.  He'd lost control, threatened those around him and he had that look in his eye.  I couldn't even hear the madness going on around me anymore, Daniel and I were locked together, which probably stopped him from hitting himself or whoever else was in reach. 

When they exited the ride, Zachary was scared (he thought he was going to get punched) and embarrassed (in front of his cousins and the rest of the carnival) and the damper on the day was much more than a few rain clouds.  I told Daniel he was leaving.  Which only escalates him, but he couldn't handle it anymore.  Todd pulled him away while Zachary sobbed in my arms.  I told Zachary and the cousins that they could stay and all I got was a sad, pathetic, "we are just going to go home now".  Which absolutely killed me.  Daniel's meltdown had taken them all so far down that they didn't even care anymore.  It broke my heart. into. a. million. pieces.  Suddenly I wanted to stay at the carnival and have them enjoy it more than anyone else.  But it wasn't meant to be. We all walked home.  This time with no singing, no excitement.  Just me fighting back my own tears for the disappointed kids.  Including Daniel.  Usually my posts are very upbeat and show the brighter side, but to have a bright side, usually there is a dark side looming about.  Thursday we had it. 

Tuesday, July 27, 2010

Pure Michigan

We are back from 9 days in northern Michigan. We go every year, sometimes many times a year and I am always a bit surprised at the beauty. It seems to sneak up on me time and time again and take my breath away. One of my friends was making fun of the "Pure Michigan" ads on TV. But I get it. Especially in northern Michigan. It is pure and lovely. I am usually feeling a bit cranky before we head up there. I don't know if it's the packing or the driving or just negativity, but as soon as I sit down on that beach along the Lake Michigan shoreline, I am once again sucked in to it's beauty. I'm relaxing and wouldn't want to be anywhere else. Can you blame me? Look at this vision!!

I'll start our journey on the blog after we spent our first days on Lake Michigan beach. We had made plans to go to our friends lake house about 40 minutes east of us on a lake that I have heard about a lot but never been to. It is a very large inland lake (4th largest in MI) that does in fact make connections all the way out to Lake Huron. Daniel was very unsure of this day trip since we have never ever gone there before. He does not like to leave the area and perseverates about "how far" things are and becomes quite agitated. I, as usual, like to push him to show him that IT'S OK! It won't kill you AND you might even (gasp) have fun!!

We were not starting out very well, since not only were we making him leave the Charlevoix area, but it was also very dark skies, and even raining. These two things have a tendency to rock Daniel's world (more later in the week on this). There is nothing worse to him than a threatening sky. I don't know if it's the thought of plans changing, the barometer changing or a combination of both. What I do know is he's MAD. So we started this adventure with two very big strikes against us.
We arrived at our friends (fantastic!) house in the rain. We came prepared with movies, portable DVD players and lots of snacks. Everyone actually settled in quite nicely despite the rain. They were watching the radar closely looking for breaks in the weather so we could go out in the boat. The plan was to take my kids tubing for the first time ever. My thought was that Daniel would love this as he loves speed, he loves roller coasters, he loves water. It seemed to make sense. My only hesitation was that when we go out in his Grandpa's boat he does not love the spray off the water. Sometimes it's ok and sometimes it isn't. Would being on a tube in the water make the spray ok? Or would it make him really angry? Only a trial run would tell us the answer to that.

Zachary and his friend (a girl from his class) went first. This way Daniel could see how it works. Daniel immediately had to move to a different seat in the boat so he "wouldn't get sprayed". This made me nervous as he was not relaxing into the trip. Zachary was on for quite a while, his friend fell off once (which was probably a good thing for me) We took the opportunity to show Daniel it was ok if you fell off. You just climb back on!

Here are Zachary and his friend having a great time!!!

We decided it was time for our turn. We swapped places and Daniel and I were ready to go. One of the instructions was to "lean back when you start". As you can see in these pictures, he got the "lean back" part, but seemed not to understand that "when you start" was only at the beginning. He was leaning back the whole time. It doesn't take a detective for you to see by the look on his face what he thought of the experience. . .

His face and his entire being was PURE JOY. The whole time. He laughed and laughed. That laughter that is contagious, because it comes from a place of such honesty. It was contagious because I couldn't stop laughing the whole time either. There is nothing more wonderful as a parent as knowing your child is having the best time of their life and you helped them experience it! Pure Michigan. Pure Joy! Thanks for the day to our wonderful friends!!

Thursday, July 15, 2010

It's Worth It

I have been so lax in my blogging!! Summers tend to whirl by so quickly I find myself in September wondering what just happened. We have been spending our days with friends, at the local pool, traveling for weekends throughout the gorgeous state of Michigan and of course with Zachary's baseball. Todd was the coach this year and that has also kept us busy. Daniel is pretty good about the games, but this season we finally figured out that it is helpful for him to bring his Ipod along to the games. That way he can listen to music that he loves and not be scared by sudden cheers from the "crowd" of people. It works. The down side is it keeps him more separated from people who he normally would engage with, but at least it keeps him from getting angry.

We had our end of the year baseball party at our home on Monday. 10 families RSVP'd "yes" to it, which brought the total number of people to 40 for hamburgers and hot dogs on the grill. A number that I initially found a bit staggering! The good news for us was we had a game at 7:00 so everyone had a time they HAD to leave by. We prepped Daniel for this many times. I knew it would be crazy here, but he had his room to escape to if he needed to, which he did. He of course came out for FOOD, because he is 13 (14 this fall) and if you all have a teenage boy you know that there is no such thing as "enough" food. He is always hungry. Always. He has grown 4 inches this year and is showing no sign of stopping. The Keens (shoes) I bought him at the beginning of summer are size 13 men's. While these are expensive, I decided they served multiple functions, they can go in the water, so they are good for being on a boat, on the beach, riding a bike or walking around. They have good support, which he needs too.

Back to the party. . . at the end of the party, it got a bit hectic as everyone was trying to round up their children to get to the game. Daniel, of course, was in the middle of it all and watching it and feeling a bit overwhelmed. I wish he could know to pull himself out of these situations, but he can't quiet do it. I could see him escalating but I was also trying to be the hostess and say thanks for coming to everyone and see you at the game and keep my own ball player moving. One of the moms was being particularly "challenged" by her son, who was not listening and trying to shove as much sugar into his body as humanly possible before leaving!! :) She was talking to him in the stern mom voice, not yelling, and he was not responding. Daniel was watching all of this with the utmost fascination. She finally said to her son "look at my face and my look, what do you think it means?" (I paraphrase, but it's close) and DANIEL said, "she's feeling embarrassed of how he's acting". I completely (inappropriately) laughed out loud. But he was right! She was angry with him, but she was probably mostly embarrassed that he was not listening to her AT ALL. I looked at my friend Jodi (who is a follower here) and said "WOW, that was a major social cue he just picked up on!" I was totally impressed.

I had to apologize to the other mom for laughing, but if DANIEL can pick up exactly what she was thinking and trying to communicate, I think it's fair to say that her child knew exactly also, but was trying to ignore her. I see over and over that Daniel is very intrigued when children are ignoring their parents and it makes me cringe a bit, because I think that possibly he doesn't know that it's possible to just say no! I really don't want that to start!! I have heard him say "did he just say "no" to her?"..... to which I respond "he did, but that is not ok to do to his mother!!" I have to keep my creds as a parent!

Daniel's social group has worked a lot on facial expressions. They look at pictures of situations and interpret how a person is feeling. I guess, it is paying off. Which is again, just in time. Whenever I start thinking that I'm going to take a break from this therapy something generalizes to our life like the one that took place in my kitchen and I realize, once again, it's worth it.