Wednesday, August 27, 2008

Autism the Musical

I finally had the pleasure of watching Autism the Musical the other night. I have had many people ask me if I'd seen it yet. Each person who asked me about it wanted "my thoughts" on the documentary. I'm sure it's because the documentary is pulled right from our lives, except for the fact that Daniel isn't in a musical, yet.

I'll start by saying I know each one of those kids. Not personally, but I mean I have known a kid very similar to each of those 11 kids from the movie. I have been around a lot of kids with autism. A LOT. There is one thing that is for sure. Just like all kids, everyone is different, everyone has their own strengths and weaknesses. While I found these kids interesting I wasn't very focused on them at all. Partially because there was never any doubt in my mind that they could pull off the musical. I knew they could. I heard some reviews of people who were amazed it could be done. I wasn't amazed by that. All that the kids need is a leader and someone with the patience, (there is that word again!) and the know how to get something like that done. Would some wonderful artsy person from East Lansing put together a production, please? Daniel would be first in line!!!! Man that kid loves to perform!

Anyway, what I was focused on was the parents. First of all, kudos to them for putting themselves out there for us all to see. At times it was raw. At least to me. It struck a few nerves. First of all the marriages that were disintegrating before our eyes. I read somewhere once that over 90% of marriages end in divorce in these situations. That statistic is nearly as shocking as 1 in 150 being diagnosed with autism! This doc. pretty much showed that. The men and women were so far apart that you could see how they wouldn't be able to find each other again. Mostly, they didn't. Some broke up during the filming and my bet is some of the parents have since divorced. I found the parents reactions from retreating into a depression, to becoming the angry mom who fights all the time very very real. Which one am I? It made me wonder. I think that at times I have been every parent in that documentary. I heard many times the word "crazy" come up. As in Dr's think your crazy, school districts, teachers etc at some point, all think your crazy. Been there on all of it. But the moms are thinking, "I have to do this, I have to do whatever it takes to help my child". Somehow I feel they are judged by this. We are all judged. But my question is, if they don't do it, who will?

I had a soft spot for Lexi. She is 14 in the doc, she sings like an angel. AN ANGEL. She is very echoalic. So is my Daniel. If you don't know what that means, someone says, "it's snowing outside", they say back "it's snowing outside". She imitates people, perfectly. So can Daniel. He can do any voice and have you down pat. It's amazing. He echos videos, books, computer games, constantly. Every single thing is stored away in that brain. Every single syllable. Amazing. He seems to be much more able to converse than Lexi is, but that's hard to know from what I saw. And she is HAPPY. That's what I think of Daniel. Happy. It's the kids who land more near Aspergers that I think have a harder time, as I think you see in the film. It's the bullying, the almost being able to fit in, but not quite. They are just close enough, that they get pushed away because that small amount separates them too much. Like they say, that last step, it's a doozy! That breaks my heart, because they so desperately want to fit in. I loved how "Coach E" wrote the musical based on what they wanted. Wyatt, for instance, talked a lot about bullying, so it became part of the show. With a song called "Sensitive" as his solo. That was awesome and inspiring.

Kids like Neal I find very interesting. How they can't verbalize at all, yet he can type out very deep thoughts and questions. Fascinating. Maybe it's fascinating because it's almost the opposite of Daniel who talks, almost, constantly but has a very difficult time pulling together his own thoughts. I loved Henry. The dinosaur loving son of Stills from Crosby, Stills and Nash. He knows everything about dinosaurs. That's almost an autism cliche!!!

The thing that I most recognized with the kids in the film and my own is, did anyone else notice how they seemed "normal" in the beginning? The use of home movies of these kids as toddlers was brilliant. Lexi and Neal I thought, had good eye contact, they smiled, interacted. Daniel had the same thing. That is what is so frustrating. You had them. They were there in front of you smiling their beautiful smiles at you. Not only with their mouths, but with their EYES. The light was there in their eyes. Then one day it's gone. It goes out. Then the tantrums start, then the withdrawing into themselves starts. The Dr's say "don't worry, it'll pass". "They are manipulating you, they are 2 they are 3". Whatever. You know it isn't true. You know they are gone. But you don't know where or why. Maybe that's why us moms "get crazy". We saw them there, right before our eyes and we lost them. So we think, if we just try hard enough, they'll come back to us. Daniel has that twinkle back in his eyes, sometimes. It isn't always there. Sometimes he is in his own world. Wyatt has a wonderful dialog about this in the film. But when he comes out. What a joy is had!

If I did it right this should be a link to a trailer of the movie. Somehow, rent it if you haven't seen it!

Saturday, August 23, 2008

Michigan Adventure

We finally made it to Michigan Adventure this year. The boys have been asking basically, since the last time we were there! We had a great time. It is an incredible park. The perfect size, clean, a lot to do, but yet doable in a full day. Perfect for the Sneathens! When you combine a strong need for sensory input, with no fear whatsoever and a waterpark you come up with heaven on earth for Daniel! We were on the Wolverine Wildcat, the 2nd tallest wooden rollercoaster, pictured behind Daniel on the ferris wheel above, and we were not even stopped and he yelled to me "let's go to Shivering Timbers!" THE really big wooden roller coaster. Zachary had just done the Wildcat and that was enough for him, so he took a pass on Shivering Timbers. So off Todd and Daniel went. I went and rode the "spinning rides" with Zachary (dad cannot). Later I did go back to Shivering Timbers because Daniel wanted to again. Talk about input! That things throws you around like crazy! My stiff neck got a lashing and Daniel had the time of his life. Let it be noted Zachary went on the corkscrew (above pic) with Todd too. He's pretty brave too.
Now, anyone who has been to any kind of zoo or park with us knows what it is like. There is no meandering around taking in the sites. It is sprint from one thing to another with tunnel vision and no time to rest. We can do Potter Park in less than an hour! The Detroit Zoo is exhausting because you stop, you look, you move! Don't blink 'cause he's moving on. Same at the amusement park. I think we went on just about everything (except the kiddie rides). Then you throw in a water park with a wave pool!?!? Now there he stays put, for a while. He was in Boogie beach just "bombing" those waves over and over again. Thankfully, this gave me time to rest. Every so often we'd get him out and feed him french fries so he'd have something to keep going on! Then Zachary, Daniel and Todd went on the Funnel of Fear. Yep. The Funnel of Fear, it's a water ride for those of you not familiar. It lives up to it's name (so they tell me) After that Zachary was strutting across the park like he just discovered the cure for cancer! He was so very proud of himself. I, of course, was properly seated in my lounge chair by Boogie Beach sipping water. . . . Let it be noted that I was riding roller coasters and "the spinny rides" too. But I took my chance to relax when I had it.
At one point Daniel took off to ride "the Snake Pit" in the water park. There was really no line and I said "let him go". It was right in front of us. Todd said "nope". I said "he does it at East Lansing's aquatic center all the time". Todd said "we are NOT in East Lansing". Good point. I feel like when we leave East Lansing, I forget about the real world. Meaning, people aren't always so kind. Daniel talks to himself constantly and really, around here, no one pays attention. But I've when you get outside of our "EL bubble", people might snicker and point a bit etc. Luckily Daniel doesn't notice. I do. It's disappointing to see that sort of thing. So Todd was right, of course, so he went along to ride the Snake Pit. It was a good thing because Daniel had to take off his water shoes to go down it and he didn't understand what the worker was trying to tell him to do. His language skills are getting better, but if he's focused on something else he won't hear them. Then they think he's being obstinate. Then there can be problems. I would say 99% of our outings are positive. I think Daniel gets more out of our travels than anybody. He needs those experiences to learn how to manage himself in the "real world". Lucky for us, we all get to experience these things together and have fun in the process!

Thursday, August 21, 2008

Conversation with an 8 year old

Me: I'm tired Zachary I stayed up until 1:00 am watching the Olympics again.

Zach: Moooooooom (eye roll) I've told you a million times, you should DVR the Olympics and go to bed at 10:00 or 11:00. Then you won't be so tired.

Me: But Zach, I was about to go to bed and the finals in the women's volleyball came on. They are the first to ever be a repeat gold medal winner.

Zach: Mom, that's great, but you still could have dvr'd it. . . when will you learn?

Ok, how funny is that? Is that not the most backward conversation you've ever heard? Obviously he is saying things I say to him, I hate when things come back to haunt you. And by the way? When are the Olympics done? I'm really tired. Oh and the time is 11:48 pm. Sigh.

Monday, August 18, 2008

Cabin with Grandpa

After Charlevoix Grandpa Sneathen wanted to take both boys to his cabin. His friend and his nephew would be there also. Over the past few years we (I say "we" meaning Todd) has taken them out fishing many times. Daniel's switch has finally flipped, as we say. He is now a "fisherman". One who loves fishing. He could sit there with his pole on the water all day and be as happy as can be. This is his Daniel's usual way. First, you take him out to try something new. It goes rather poorly, usually. You try again, and again, and again. etc. Then somewhere along the line something magical happens. It all becomes ok. Sometimes, more than ok. It can possibly turn into a life long love for him. As with everything, it just takes him a while. Sometimes a long while. That's why you keep trying. You just have to. That is probably why whenever one of those surveys goes around the internet and I send it out and the question of name one word used to describe me. Almost every single person says PATIENT. It is a virtue after all. But it can also learned. Take it from me. You can learn it. I did. So has Todd. We were probably, at one time, the two most impatient people on earth. My how things have changed. When you hear the word autism said to you, you better dig down deep and find patience, and quick. I'm reading the book Eat, Pray, Love right now. The Italians say each city has a word, then they go on to ask what is your word? One word that describes you. I loved that Rome's word was SEX. I think my word has to be patient. That pretty much embodies our life.

This first picture shows Daniel with his smirk on his face, I asssume, showing Grandpa the fish he just caught. Of course when he swung it around to show Grandpa he hit Zachary in the head with it, which explains the look on Zachary's face. Speaking of patience. . . Zachary is one amazing kid.

So here is Zachary's equal time and his sweet smile showing his catch. Way to go! I believe these were taken on Shupac Lake. My spelling may be off, but whatever. You see, girls are not allowed at the cabin. So I don't know the ins and outs of the surrounding area. This is me crying . . . . not really, but I let them believe they are pulling something incredibly special over on me that just the boys "get" to go there, while mom has to stay home and do things, like shop, for instance. It's so unfair. Really. Do you believe me? But really the "cabin" is a very special place to them. We are lucky to have something like that. How many 8 year old boys do you know who know how to shoot a bow and arrow or a BB gun? Properly I mean, with good old fashion safety instruction? Not many. They get to fish, shoot targets, make fires, ride atvs. All very manly. I wonder if they grunt in the old Tim the Tool man Taylor style when there? Remember that? Very manly indeed. One thing is for sure. They make memories that they will have forever. They are doing something with their grandfather, and usually their father too, that binds them all together. Meanwhile I'm at home, usually cleaning like a crazy lady (vacuuming for sure) and then out shopping for a few days. It's all good. Thanks Grandpa!

Thursday, August 14, 2008

Tropic Thunder

How does the saying go? Two steps forward, three steps back? I went on my friends blog today and read about the new Ben Stiller movie, Tropic Thunder. To read an article about it go to On Amy's blog, as well as many others, they are asking for a boycott of this film. In the movie they refer to a "full on retard" many times. I can just see all the kids now who go see the movie and will think this is hilarious (since it is being portrayed that way AND it's a huge movie, so it must be ok, right?) and the phrase will become the new insult in school. I hope that every teacher/principal/PARENT will tell their children this is NOT ok. I cringe at the sound of that word. I remember being a kid and my best friend Jean's sister had and has Down Syndrome. Kids would sometimes call her "the r word" and tease her. It still brings an anger up in me when I hear it. It is simply not ok to be mean to other people. Period. Why is this funny? Does anyone have an answer? Because I would love to hear it.

Unfortunately, it's not just kids. One day last year in school I heard a MOM, yes a mom, say about her son, "he's such a retard". WHAT? It took every ounce of my being not to shake her and tell her that she is spreading ignorance. But I didn't. I probably should have, but I didn't. When I hear things like that it brings me back to reality and makes me realize we have a long way to go. You can really live a bubble here in East Lansing. Most people are very p.c., everyone plays with everyone. Most of the time there doesn't seem to be any of the racism that you see other places. But every so often it sneaks in. Zachary gets so morally outraged about social issues. He's 8. He goes on rants about racism, smoking and using "bad words" (like stupid!) When he was 6 a kid at school asked him, (I know this because a teacher overheard this and shared it with me later) "what's wrong with your brother?" He said, "nothings wrong with him, he's just Daniel". Amen. We could all learn from that.

I just saw Ben Stiller on Regis and Kelly yesterday. I know he has children. Does he allow them to call other kids a retard? My guess is no. Maybe I'm wrong, but I can't imagine Mr. Stiller and his wife Christine letting their kids use such a hurtful word. Why then does he use it over and over in his movie? From the description of the movie that I heard, it sounds like a funny concept. Why he "went there" and decided to make fun of people with disabilities is a wonder.

You can sign a pledge by going to Stop and Think, the r word campaign.

I also will not be going to see Tropic Thunder. I hope you will join me and not endorse the movie.

Monday, August 4, 2008

Cordless phone, where can you be?

Does anyone else have this problem? I lose cordless phones. They end up all over the place. I never hang them up, then I can't find them. I know some people who always have them on their little cradles right where they can be found. But really, what is the point of having a cordless phone if you don't carry it around? That is what they are for! Otherwise you might as well have the giant phone hanging on your wall like we did in the 70's. Our families was on the wall in the kitchen. So I'd sit on the counter or lay on the floor (ala Marcia Brady). But technology has come a long way since then. We don't need to be tied down. We multitask. So I use the phone as it was intended. I move it. I carry it. But then I lose it.

I do not have a good track record with these things. Last year I brought one outside with me into the backyard. I came inside and forgot it was out there. Then, it rained. Shockingly, it never worked after that. Then I was down to one cordless upstairs, and one in the basement. To compensate for my stupidity the basement model came up to the main level. I went a long time without ever purchasing another. I always seem to need to buy these darn things and I guess I went on strike. Then as the holidays rolled around I asked my dad for a new cordless for Christmas. Perfect! And he delivered. . .he not only got us one, he got the model that has the home base and another station with another phone. So the other model goes back to the basement and I still have two for the main floor! Yea! I can't mess this up right? Wrong.

Once again, I lost a handset. Easy enough, you just press the page button right? I love the page button. It is a wonderful feature for people like myself who can never find the handset. I wish remote controls had that feature too. You could just walk up to the television press the page button and your remote would beckon you to it's hiding spot under the couch. Really, someone should invent that. Well, by the time I paged my phone the battery was dead. So I lost another one. Periodically I would look under cushions, under couches, in the laundry room. Anywhere I might have left it. I was sure that during some cleaning frenzy it would magically appear. Todd asked me more than once if it was in a flower bed somewhere. I was certain it was not. Well, sort of. But I had weeded many times since then and never run across it, so I felt fairly safe.

Then yesterday Todd walks into the family room with the missing phone in hand! I couldn't believe it. I begged him to tell me where it had been hiding for 3 months. Yes, three months. I know because I checked the last caller id and the last one was May 5. I have been through this house hundreds of times since May 5, how could I have missed it? Finally, Todd revealed where it had been hiding. There was only one place in our house that I had avoided for 3 months. . . . .it was on the treadmill. In the exercise room. How humiliating.