Friday, July 31, 2009
Thursday we left East Lansing by 8:00 am. Not bad considering we had decided we'd leave between 7:30 and 8:00. I've mentioned before the Sneathen's are nothing, if not efficient. We had a stop on the way that was over 45 minutes. That is a very long aside about a prescription and I don't want to bore you with it. We arrived to our destination of Niagara Falls that day by 2:00. The kids did remarkable in the car. As I believe I mentioned, the car ride was making me nervous. Daniel has the unfortunate problem of getting car sick. He seems to be fine if he's just riding. All of our attempts over the years at using DVD players have ended with Daniel either a. moaning and crying from a stomach ache/headache or b. us scrambling to grab a wadded up McDonald's bag from the floor of the car for him to throw up into. Either way they are both unattractive options. With his memory, that sticks with him...forever. He doesn't want to repeat it. Reading and playing Nintendo DS obviously end with the same results since in all instances he is staring at something with the world whizzing past his window.
Last year we bought Daniel an Ipod for his birthday. My thought was that he could listen to "his" music and we could mercifully listen to something ourselves. You see, he also has had a "thing" about the radio. When he is in the car, it must be off. There has been no negotiating this. I have always chalked it up to the fact that it is too random. You don't know what's next, you don't know if annoying Dj's will talk for 15 minutes, or if a "scary" commercial will come on for something that terrifies you. If I tried to leave it on, panic would ensue and he would start escalating. So, we left it off, and drove in silence. Well, not silence, since he is normally chatting or singing or repeating videos. After a while MY sensory system would go into overdrive and the constant noise. Therefore, driving long distances has been avoided. Luckily for Zachary he can happily play his Nintendo DS, read, and/or put the head phones to his Ipod in his ears and can check out of the whole situation.
Before Charlevoix, our vacation last week, I loaded up Todd's Ipod with songs, and bought an adapter for the car so we could listen to Todd's ipod through the stereo system. This worked on the way to Charlevoix and he tolerated this music. After a while he'd ask for it to turn off. It wasn't a real long time that he would leave it on, but it was helpful to break up the monotony of things.
Yesterday, on the way to Niagara, somewhere in Canada, we, for the 927th time this year, suggested that Daniel listen to his Ipod. The thing that was different this time was Daniel said, "I can't listen to my Ipod, I'll get car sick". DOH! All this time he thought he'd get car sick if he listened to music. Why not? He gets car sick when he tries to do anything else! We assured him that when you listen to music you don't get car sick, it's only when you are looking at something with your eyes. He decided to give it a try.
This picture is Daniel and how happy he was after he figured this out!! Can I just say this? OMG! It is unfriggin' believable. He is SOOOOO happy. He is listening to his favorite symphonies. He is LOUDLY (since he has headphones on and doesn't understand that he is yelling!) saying the things that he always does, like, "LOOK, it's a motor home" (literally every single motor home he says this about since looking inside our neighbors this spring, thanks Laura!) Or "here come the bassoons" or "it's the baritone, just like I play". He can identify any instrument by sound in the midst of listening to a symphony. It is quite amazing. The fact that his mind replays the video from Fantasia as he listens is an obvious advantage. It seems like he is seeing the whole video as he listens. He is saying things like, "the dinosaurs are fighting, the dinosaurs are stuck in the mud, one just died" This is him describing what is going on in the video as he listens to the music. He knows the visual at the exact moment in the song. He is in his GLORY. We all are. It has totally changed our driving dynamics. At this very moment, Daniel is listening to his Ipod, Zachary is playing his DS, I'm blogging and Todd is mercifully listening to XM radio, to WHATEVER he wants! It's AMAZING! Who knew all we had to do was lock Daniel in a car for 5 hours to figure all of this out? So once again, it goes to show you that getting our kids out, experiencing life, trying things, as scary as it can be sometimes, is, in my opinion the way to go. I could have paid his therapist big money to try to help us with the music in the car issue, but we didn't need to, we figured it out. We are now wondering if the radio will now be acceptable to have on even if he doesn't have on his Ipod. Maybe he always thought he'd get carsick if he listened to the radio. We haven't had the chance to figure that out yet, even though today's drive is 8 hours, he's had his Ipod on the WHOLE time . . .LOOK mom,I see another MOTOR HOME!
Tuesday, July 28, 2009
So when I was in Charlevoix this week and checked my phone/email, the last thing I expected to see on a mid July day was an email from the middle school that Daniel will be attending this fall. His coordinator emailed me and wants to meet this week, with possibly the special ed director, principal, myself and her. I read the email over and over. I couldn't quite wrap my brain around it. My head was in a different place. It was in northern Michigan at carnivals and parades. How am I supposed to think about his academic schedule for the fall? That's what the email was about. His schedule. There are several phrases starting with "we took the recommendation...." "we took a second look....." "based on our meeting.... "In short, they changed the schedule we came up with in our IEP. I have read and reread the email many many many times. I finally emailed her back on my trusty Blackberry from my in-laws vacation home saying I couldn't just go ahead with it. I did need a meeting. I would be home for 3 days before I left again for another vacation. I asked for his teacher from last year to attend. I don't know if she can. I feel like she can give me good input on if this is the right thing for him. We had him in both resource and a co taught math class. They got rid of resource math and put him in a computer's class. He has an academic support and they feel like he can get enough extra support in here for both math and science. This may be excellent. It may not. I know nothing about the computer class. I just have too many questions, so before I leave again, I have to meet with the school. I have to switch into school gear. This is not easy for me to do at the end of July.
Without my Blackberry I may not have gotten the email until way too late to schedule a meeting. So once again. I'm happy I have it. But there is that part of me that wondered if it would have been better to not be so connected. But then I thought again. I still love it. After all, it is pink.
Sunday, July 26, 2009
That meant straight to the carnival on Thursday. You aren't supposed to get your special "kids day" price on the arm band until 2:00. Todd got the brilliant idea to ask at 1:00 if we could just get it then. The carny said yes. Brilliant. We got an hour of moderate lines until the 2:00 deluge of kids standing in the lines of 8 rides. By the way, this equals LONG lines. The excellent thing this year is that Todd and I stood in line with the kids and they went on everything TOGETHER. Having a wonderful time yelling and screaming and enjoying it TOGETHER. This was nice. I did get a ticket to ride "Crazy Dance" with Daniel once. Zachary ran into a friend and he wanted to ride with him. I actually sort of wanted to ride and went with Daniel. Crazy Dance is sort of like a tilt a' whirl, but faster and with really really loud music playing. It was a great ride. I love that sort of thing. We rode together and I thought, had fun. We got off and Daniel said "now you are done, I can go myself". ahhh. Somewhere in there he is almost 13 and definitely doesn't want to ride a ride with his MOM duh. Well, I had fun anyway.
In this Ground hog day scenario Friday includes beach and Friday night fireworks at the same beach. I'll start with the beach. There are basically 3 beaches we go to in the little town of Charlevoix. One is by the public boat launch. Friday started with skies as blue as the lake. Glorious. Zachary and I jumped on our bikes and rode to the furthest beach, put our toes in and chatted. Just the two of us. It was really nice. We rode back to Sneathen base and had lunch. Grandpa got the boat ready and we headed back. But in this time it had clouded up. We were undeterred. We put the boat in, got in the boat. It was getting darker. My head was telling me this was NOT a good idea. My heart wanted to get in the boat ride. It's part of the schedule after all! Within 2 minutes we hit a trench of two wakes and a wall of water came up over the boat like I have never seen. Daniel was sitting in the front with Todd, I was right behind. The water came up over our heads. Note to internet, this summer has been COLD in Michigan the water was COLD. Daniel, while he loves the water most of all, does not like it in this situation. Did I mention, it was cold? The impending storm was making the air temperature drop faster than my hopes for a good ride. Then I was just freezing. I had on a bathing suit and a long sleeve, now soaking wet cover up. Daniel was crying. By the way, Zachary was sitting next to his Grandpa behind the windshield and ducked. He was the only dry person. We calmed Daniel down, but he was still upset that Todd's shirt was soaked. This kind of thing is very very upsetting to Daniel. I think he looks at Todd and sees a soaking wet shirt, he doesn't see himself and kind of forgot about that. But every time he looked at Todd he was SO concerned about his shirt. All weekend he kept asking Todd how his shirt was! This all went from bad to worse. The only ending to this portion of the story is that it started raining on us. HARD. Then everyone was just drowned and we had to wait in line to get to the boat launch. The thing that always makes me laugh looking back on these things is that we are all "oh, it's not a big deal, we are fine" and smiling like fools. When in fact, in my head I'm screaming "I'M FREEZING GET ME OUT OF HERE, I'M MISERABLE". It's amazing how trying to get your kids through an uncomfortable experience you learn to suck it up yourself. That is something I have learned. It is actually very useful for me to be horribly uncomfortable and put on a happy cheerleader face. It's funny because I am SO not a cheerleader. But for Daniel, I can be and will always be. We are teaching him to try to manage these situations and in turn learning to ourselves. It's all good.
That night is fireworks. The first of two fireworks. Daniel LOVES fireworks. The visual stimulation and beauty is glorious to him. We were PREPARED this time. After hanging out in the park at 10:00 it started raining. We all reached down and pulled up our umbrellas. Well almost all. My sister in law Amy and Todd's brother Mark were sitting there. She is still laughing about turning around and seeing up simultaneously put up our GIANT umbrellas. I knew it would rain. Of course it would, that's the way my day was going, so as we were finished playing with the washer toss, the football etc, I'd carry it back to the car so we'd have less to carry in the rain. I also grabbed umbrellas. Sure enough I was right. Be Prepared right??
Saturday was gorgeous. This is parade day. This will sound profoundly unAmerican, but I hate parades. Boring. And this parade is the same parade every single year. Groundhogs day. The only thing that changes is the queen that was just crowned for the Polish festival or the Elk Rapids queen, or the Venetian queen.... you get the picture, float after float of queens. The only parade I have ever enjoyed also involved queens but it was the gay pride parade in Chicago! Daniel loves the queens. He loves the tall guy on stilts, the bagpipers. The predictability of it all. He waves and smiles and yells at them all, all in his glory. The things we do for our children.
The day finishes downtown with a boat parade (yup another parade) on Round Lake. At dark the boats who enter parade through the harbor all decked out in whatever the theme they chose, covered in lights. My favorite this year was the dark boat, unadorned. It was called, "College Fund". I thought it was clever. . . . it ends with, yet again, more fireworks. That ends our ground hog week. We drove home on Sunday in the rain. Daniel was sitting on the couch last night and he said, "I'm really excited about our vacation to Niagara Falls and Massachusetts", just as natural as can be. He isn't anxious, he isn't worried. He's excited. That's what makes these all worth it. I think we may need to go back to get to get some better boat rides in though...
Friday, July 17, 2009
It's been a while since I've had to do it. Partially because Todd's parents BOUGHT a house in Northern Michigan. This, obviously, helped a huge amount with Daniel. After the first time, he always knew what to expect. Our other vacations have revolved around visiting my aunt in Florida. She lives in Sarasota, Florida, which is beautiful. So each time we've gone there it has been the same house, pool, beach. Convenient. We are very very lucky indeed. There were two Walt Disney World (WDW) vacations thrown in there which needed a great deal of preparation. But basically we have been in a vacation groove. Not a RUT. No way. I would never describe having wonderful accommodations at our feet a rut. It's been wonderful. In a few days we leave for our regular northern trek. It is going to be much shorter than the usual because we have another vacation on the horizon. One that is causing my head to constantly swirl with activity about preparation.
My eastern cousins and the Michigan cousins have talked for years about getting together again. When we were kids it happened with some regularity. Since we are now all adults with our own families that has predictably fallen off. My Aunt and Uncle, last year, celebrated their 50th anniversary. There was talk of a giant celebration. Never happened. Last spring two of my cousins and I flew out for a wedding reception. It was wonderful. I hadn't realized how much I missed that part of my life. This is my mother's side of the family and she has been gone for (gulp) 16 years now. Unbelievable.
I also have become a genealogist part time and have spent countless hours looking into our family history. Facebook, believe it or not has also come into play. I LOVE facebook and spend a LOT of time (yes, too much) on it. It has been a wonderful way to reconnect with these relatives. Which brings me to this trip. I finally decided I wanted to go back and I wanted my kids to KNOW these people. Not only that, I thought it may be a great idea to DRIVE out to see them. I think nostalgia was getting the best of me because I hate driving anywhere. Ever since Daniel was 7 and I (ahem) experienced our first flight with him, I have taken the opinion that we can get on a plane and endure 2 1/2 hours instead of 20 hours driving. Makes sense. He does well on a plane. It is still a lot of work, don't get me wrong, but it is relatively painless. The memories of my childhood and driving to Massachusetts with my cousins got the better of me. I decided that we would all DRIVE together! My cousin and her family are driving too. Just like the old days! Well almost. We aren't all going to be sardined into an air conditionless station wagon together. We will be in separate cars stocked with Nintento DS's and Ipods. Daniel however, gets car sick and watching movies and playing video games doesn't work so well for him. But on the way we are stopping for an overnight. We are spending the night in Niagara Falls.
Daniel has researched Niagara on the internet and I believe this is what he is most looking forward too. The kids LOVES water. He has tried to create his own personal waterfall in our house when he was younger by overflowing the toilet, (on purpose) and continuously flushing it so he could watch the water flow over and over. I discovered it by walking into the kitchen and there was a waterfall coming through our kitchen light to the floor. So the prospect of taking in the REAL waterfalls is very appealing. We are then driving the rest of the way and spending 4 days with our family. I was trying to count last night and very quickly came to 33 people. 33 people. That's a lot of stimuli. They are all strangers to him. They of course know of him, and his challenges. Some even follow this blog regularly. They all seem very receptive and understanding of the challenges ahead of us. We'll be ending our trip with 2 nights at the Cape. Cape Cod. All of these places have SUCH wonderful memories for me. I can't wait. I just hope that I am able to slow down a bit and take it all in myself. I hope I'm not so busy trying to keep Daniel prepared and over stimulated that I can relax some of the time. I hope they come away with the same wonderful memories that I have of this trip and they appreciate the love that will be sent their way. I hope we don't all kill each other in the car. What was I thinking?
I spent hours on Sunday writing Daniels social story. I've printed out maps for each leg of our trip. I've written stories about what to expect, what dates we'll be where. I copied pictures off the internet of the hotels we'll be staying in (all with indoor pools for plan B of bad weather) all with refrigerators and microwaves to handle our food "issues". I've put pictures in of the relatives with everyone's name. I think I'm ready. I just hope everyone is ready for US!
Wednesday, July 15, 2009
Daniel was THRILLED with the outcome of the cake and actually didn't even get upset when we cut it. This has been a problem in the past. He didn't want it destroyed, even if he could get cake out of it. That was not the case this time, I'm happy to report.
This week at his therapy, they talked about mistakes. How to act, what to say, (not FREAKING out) when someone makes them or if he makes them. This was so timely. It was about calmly using your words, that it's ok to be disappointed but a lot of the time the mistake can be fixed if you go about it the right way. I really never understand how we can go over something like this millions of times, but Miss Mary talks about it for an hour and it sticks with him. Last night we went to Olga's Kitchen, which I've talked about before. They gave Daniel "spicy" fries, that were seasoned with cayenne and black pepper. I didn't even notice. Daniel started eating and looked up to Todd and said "why did they put cayenne on my fries? I don't like to eat them that way". Just as calm and cool as ever? Normally a mistake in a restaurant is punishable by death in his mind. We have waiters and waitresses all over town that remember us CLEARLY for YEARS after a mistake was made with his food....this time, just calmly said the problem. We praised him all over the place and said we'd get them to fix it. Which they did. He complained a bit that he "had to wait" but it was incredible. I quickly went over the things I remembered from the lesson and compared it to his excellent problem solving. Reinforcing at that moment is so helpful when he can see that he solved his own problem, it was taken care of and he was calm. What progress!
Now we are puppy sitting. That's right, my cousin dropped her puppy off here for two nights. He is a coton de tulear, and adorable. Here's a picture of "Polar" and I together.
The boys were very excited to have him, but as I suspected the "puppiness" in Polar is a bit much for Daniel. When puppies play, they nip. Daniel is not happy with this. Daniel wears giant bunny slippers in the morning, Polar thinks some bunnies have come in to play with him. Polar wants to nip and play with Daniel and Daniel starts jumping around like the cartoon elephant running with a mouse going between his giant feet. I'm yelling, "Daniel stop moving, don't step on the dog!" The puppy has gained several pounds and I think I was told he weighs 5 1/2 pounds now! Good grief! He is basically a white dust mop. Adorable yes. Unpredictable, YES!
Getting a dog is something I've been throwing around. I sort of knew a puppy didn't seem like the best fit for us for all the reasons I've stated. All I want is a trained, small, hypoallergenic, non shedding dog that isn't yippy and is good with kids. I know, that doesn't sound like a dog at all. There are some breeds that are possible, but I would really like to do a rescue and frankly all of the breeds I'm interested in cost a fortune. I can't pay that much for a dog. So in addition to those requirements, cheap is also added on. Impossible? Maybe. But I think we'll keep our eyes open. The pluses, I believe, would be helping teach some flexiblity. Teaching responsibility and caring. Dogs give unconditional love. All things that would be a great benefit to, not only Daniel, but Zachary too. For now. Two days seems like a good start.
Tuesday, July 7, 2009
We spend our "up north" time in Charlevoix. It's nickname is actually "Charlevoix the beautiful" and that about sums it up. It is a tiny town, that has Round Lake as the center of it's downtown. There are enough yachts and sailboats there to make you think that someone in Michigan must still have a job....Round Lake connects Lake Michigan and Lake Charlevoix. No matter where you are you are surrounded by gorgeous blue and turquoise water. It's where my in-laws grew up and where we now make our summer pilgrimages to. This long holiday weekend we brought our friends with us. The whole family. They are moving away from us, well not from us, specifically, but their family is leaving Michigan for Florida within the next few weeks. It will be life changing for our family as well, because "the mom" Alyse is my closest friend. Her oldest child is Zachary's best friend. Mike, the dad is Todd's good friend. They have two gorgeous girls who I would love to take home with me permanently. This sucks for us. Big time. We decided to steal them away for a weekend and keep them to ourselves for a fun time in Charlevoix. So we did. I knew it would be fun. I knew it would make memories for our families. What I didn't anticipate would be what Daniel would get out of it. Honestly I hardly considered him when making the plans. It's one of those happy accidents that took me by surprise.
The youngest of this family, Elin, is nearly three. This month actually. Recently when we've been together we have noticed a connection growing between her and Daniel. It is a really interesting relationship. She is a petite little thing and Daniel is, well, gigantic and will be a teenager in 3 months. But Daniel of course, still loves things like Blues Clues and Arthur. He likes to play games that she likes to play. Developmentally, they like a lot of the same things. I believe it goes deeper than that though. There are some people who you just connect with, and I think this pair does. Despite the huge differences between them. Daniel, who has zero patience, has so much patience for her. Elin, despite her petite appearance, is one of the strongest personalities I have ever met, and since she isn't MY child, I think it's adorable! What this weekend did for Daniel is what all kids need to break out of the autism "shell". It's what we try to do for him daily and can't do. The visitors broke up his Charlevoix routine. All of a sudden there were all of these people there who also wanted turns with the dvd's and walks in town. People you had to wait for and share your bubbles with. It pushed him out of his box. A lot of the time that comes with much distress for Daniel and he gets very agitated. But this weekend he took it in stride.
When he was watching a dvd Elin came marching in and watched him rewind to the same spot over and over and over. She looked at him and giggled and said, "Daniel, what are you doing??" Not with a mean spirit, but she'd never seen someone do that before and she's only two! Todd suggested to Daniel that Elin may want to watch with him, but she likes to just sit and watch the video all the way through. So he put it to the beginning and sat and watched it with her! What?? That does NOT happen. Then she suggested that she would like to watch Arthur next. Ok she really marched to the videos, picked it up and said I want this. I told her she could watch it when this one was finished. So HE PUT IT IN AND WATCHED THE WHOLE THING WITH HER. Without yelling. Without anger.
Every night he records his voice on a Vtech computer before bed. I had him do it early on the fireworks night, anticipating a late night return and him falling apart because of the time of our arrival home (which was midnight). So he actually did some of his routine before we left for the fireworks to get it out of the way (that actually worked be the way, shocking, I know). Elin wandered in while he was recording his voice. I stayed with them because I saw nothing but a bad ending coming. He has an order that he goes through and does not like it interrupted. She plopped down by him. I explained what he was up too. Of course she said, "I want to try". So she started belting out "Tomorrow, tomorrow, I'll love ya tomorrow, it's only a day away...." in pure Annie fashion. Where was a video camera? He listened to it back. She was starting to take over and he said to her, "I'll say . . . . . this, then you say that....." AND SHE DID. He incorporated her into his routine and he changed it. They took turns, she listened to him. Then the test. His last recording is always SILENCE. No one can talk. So he says to a two year old, "You have to be silent, no talking", and she did? It was just, for lack of a better word, weird.
One of the mornings, all of the kids, except Daniel were drawing. Daniel was up in his room, probably doing his getting dressed routine which takes up to 20 minutes. Elin was drawing a typical almost three year old drawing. I was talking to her about it, trying to find out what she was working so intently on (I couldn't see anything but scribbles in my head) She showed it to Todd in the kitchen and she seemed disappointed in her drawing. She showed him and said, "it's broken" in a sad way. We sort of all thought, huh? How can a drawing be broken? A few minutes later Daniel came down and Elin handed him her drawing. He glanced at it and said, "this is broken" and handed it back....? What the? Alyse said wow, they have quite a connection. My mother in law, said it must be a developmental thing. I think it's both. They are the only two who could see what was so obviously to them, "broken". Any thoughts?
As I've mentioned in routines, Daniel's routine for snack is a chocolate Poptart and 10 saltine crackers. The 10 crackers is a VERY important part of this. We often ask him for one, knowing that he will say no and protect it with his life. But we try to give the possibility that he may one day give up a cracker. Why? I don't know, to give him some flexibility. Of course Elin has no concept of this and when she saw Daniel's snack she said, "can I have a cracker?" You guessed it, he gave her one. Honestly, of everything that happened this amazed Todd and I the most. This is very rigid for him and I have never ever seen this happen. He just handed it to her like he does it all the time. No angst. Nothing. She asked for another, Todd suggested she may not want to push it....
Zachary had been coveting a Nerf gun. Not any Nerf gun, but the "N strike longshot CS6". (sounds sort of A Christmas Story doesn't it?) Todd and I went to K Mart (there is no Walmart in Charlevoix where I refuse to shop anyway. Charlevoix ran them out of town when they wanted to build there, yet another thing I love about Charlevoix). After some discussion of the fact that Zachary literally never asks for ANYTHING we decided to splurge and buy it. Todd very observantly said that we then needed to find something for Daniel. A nearly impossible task. We found a purple bubble machine and purchased it. He loves purple and loves bubbles. We got a giant refill of bubbles and bought it. I knew he'd be possessive of the bubbles, which he was, but he pretty easily shared them with the girls and let them use them when they wanted to. They spent a lot of time watching the bubbles floating way into the sky over the houses and out toward the lake together.
While this weekend was partially very selfish for me. I wanted to make even more memories for our two families. I wanted our friends to be able to spend time away from the stresses of trying to move their whole family across the country and all the work that comes with that. I wanted Zachary to get as much time as possible with his buddy. What I didn't expect was Daniel to be pushed out of his box by his good friend Elin or for him to find a connection that I know he will never forget with an unlikely friend for him, a blond haired, blue eyed two year old, who seems to know just what he needs. I am sure that the connections our families have found will extend all the way to Florida. Ties like that stay together no matter the length of time between visits. And while we'll miss them being part of our every day lives, I look forward to our visits together and seeing what else will grow out of them.