What is he trying to say?

Yesterday, we took another tour of the middle school. The day wasn't starting out very well when I reminded Daniel of the plan he got quite upset with me. There were angry faces, pounding on the ottoman, maybe a few slaps to his own head. Hmmm. This made my heart sink. When I asked him what was making him feel angry, I got the usual answer. "I don't know." He doesn't know. This is an on going problem for us. He just can't put his finger on what is making him angry in a situation. If he could say, "I'm nervous about it" or "it will take too long" or whatever, I could help him with the problem. But he doesn't know. He just knows he's pissed, leaving me with my constant guessing game of "what to do next?"

It's a game with which I've become quite proficient, to be certain. I feel I am very in tune to what he needs. I have to admit, he took me by surprise yesterday. He has shown very little anxiety about the transition and has taken it in stride thus far. I knew one thing, I wasn't backing out. He was going. I was hoping our trip would give me some insight on what the issue is.

When we arrived Mrs. Social worker was not in the office so the secretary called her over the p.a. system. Zachary was also not a fan of going and he had brought a book and was planting himself in the waiting area so he "didn't have to walk around". Oh, he has it SO rough, doesn't he? Fine with me. When we were waiting for the social worker/tour guide Daniel draped his body across the desk and just stayed there.

Me- "Daniel are you tired?" (just a lucky guess!)

Daniel- "a little".

Apparently, climbing millions of stairs at Avalanche Bay the previous three days was taking it's toll. Of course I DID realize this. He did not sleep in, as I had anticipated. He was too excited to get up and get his computer time that he had missed out on over the days. I suggested he might want to peel his body off of the front desk and sit in a chair. He did stand up but the schedule for the school caught his eye. I pointed out (again) that school starts at 8:10 not 8:55 like last year. It gets out at 3:04 pm not 3:38 (sharp! as he used to say) like last year. This REALLY caught his attention this time (Yes!). The other biggie. Lunch is at 11:00 instead of 12:30. 12:30 which he has pretty much maintained throughout the summer. These times are very very important to Daniel. We discussed them at length while waiting and then I took his picture in front of the sign in the office. He's so cute.

When Mrs. social worker came into the office she mentioned that she had to find his locker combination, and as she was walking away Daniel quietly rattled it off. She looked for a decent amount of time as Daniel kept glancing at me with annoyance, "Is she still looking?". I KNOW he was thinking, I JUST told her what it is, why is she looking? But I said nothing. When she victoriously came up with it, she said, what did you say it was Daniel? He repeated it flawlessly. Impressive. I knew it too. Numbers are my thing to remember. I was staring at the secretary thinking, "I have no idea what her name is". Not a clue. But his locker combination from a week ago. No problem.

We headed up the stairs and were letting Daniel lead us to the direction of his locker, which he easily did. He worked on it a few times and it was pretty obvious that he had it down now.

He dragged his feet down the hall toward his first hour class, computers. Saying "math", "science" on the way as we passed a few rooms. Now it was clearing up for me. He already knew all of this, why did we have to do it AGAIN? That's why he didn't want to come. The boy hates repetitiveness. Now I get it.

We did enter his computer class which he seems excited about. I again stated that I wished his para was there to tell us which would be the best seat for him. Then I realized, DUH. ASK HIM. People don't ask HIM enough of the time, including myself. I'm trying. He is really pretty capable of telling you. If he doesn't know, he'll say so. So I asked him, "what would be a good seat and computer for you Daniel?"

"Right here." He went right to it. He had probably been thinking that all along, but he doesn't speak up about it. It was across the aisle from the teacher's spot (which is a very tall chair so he can see the students screens), in the back (he doesn't like people behind him very much) and closest to the door. Perfect. Mrs. social worker is passing the information along to the computers teacher. Then we left. Quick. Mrs. social worker and I both realized he was set. We aren't going back until orientation day, August 31, when all of his peers will be there too. Things will look different with halls full of highly anxious, hormone filled kids. But Daniel's ready. Even if he couldn't quite tell me that in the morning when he got angry with me. I get it now Daniel. Welcome to 7th grade. You are growing up.

Bob and Daniel

Scene from "What About Bob"? Ever seen it? Here's a synopsis. Bob, a man with, well, issues, played by Bill Murray, follows his new psychiatrist Dr. Marvin to his vacation home. Majorly crossing patient doctor boundaries. His Dr. had given him his new book to read while he is on vacation. The book is called "Baby Steps" which is the title of one of my blogs here. While the concept is simple, it blows Bob away and he is feeling a breakthrough from his obsessions for the first time in his life. He is so thrilled he must follow said psychiatrist to thank him. (played by Richard Dreyfuss) After many attempts he can't get Bob to leave. The family, of course, takes to him and he stays. I always thought this movie was funny in sort of a strange way. This was BEFORE Daniel was even born. My favorite scene from the movie is when the family goes sailing. Bob is Obsessive compulsive of the highest order and scared of everything. Then Bob, after getting in good with the family is invited on an outing. This has always been my favorite scene, I don't know why. But I have referenced it over and over through the years. His excitement makes me happy, not in a way of making fun of him, but I am completely thrilled for him that he is sailing.... even if it is while tied to the mast. Whatever accomodations are needed, right?




I bring this up because over the past three days at Boyne Mountain I was watching Daniel, who was nicknamed "fish" by my extended family on our vacation, in his GLORY at Avalanche Bay indoor water park. This was our third trip there. We went with my cousin Beckie and her family (who we traveled east with). Apparently we aren't yet sick of each other!

Daniel would go and go and go at the water park until, as Beckie said, he would collapse into a heap on the floor. Even if he were bleeding from his feet from walking with them wet for 24 hours he'd still say "I'm fine, I can keep going". I don't want to leave yet. We didn't quite get to THAT point, but close enough. He is just beyond in his glory. By the third day I limited the water park to an hour before we drove home, he was literally limping around the park, walking veeeerry slowly.


I said, "Daniel, does something hurt?"

Daniel- "No mom, I feel GREAT". (limp limp limp)

Two of the slides are approximately 3 stories of steps to climb while pulling a huge tube behind you. The first time I did it I had to stop at the top and get my breath and stop my head from spinning. The last two times we were at the park there were huge lines, so you didn't just climb 3 stories straight, you inched up. No one was there this time, so you just climbed 3 stories, got on the tube, went down and did it again. In Daniel's case over and over and over. On Tuesday for 6 hours. I of course made him stop to eat, forcibly. Monday night we were there for 3 1/2 hours. Wednesday for an hour.

Besides the tubes there is a lazy river. Of course he doesn't want to bother with this relaxing experience. He's in it for the thrills. He is fearless. There is also a "race track" where you also climb millions of stairs, lay down on a mat with handles on your stomach and race down as fast as possible. It takes about 5 seconds. Then again you climb again. Then there is the surfing. I could (and did) sit there for hours watching my boys surf. You can lay down on a boogie board and surf the waves, or they have a surf board to stand on. Few people use this. Every time Daniel would jump onto that board and surf those waves, expertly, back and forth until his time was up, he'd yell, "LOOK MOM, LOOK AT ME, I'M SURFING!" Sometimes so loud everyone would look around with a smile wondering who on earth he was talking to. He was the only person I saw in the hours I sat there who talked while surfing. The. whole. time. I would just smile thinking of Bob tied to the sail boat in his glory at overcoming his fear. The way Daniel was yelling was EXACTLY the same. His joy was contagious. People would smile when they'd see me waving back to him, giving him a thumbs up at his joy, acknowledging that I could see him. Then the whistle would blow, he'd roll off and get whisked to the top of the waves and get in line and do it all again. and again. and again.

Going Nuts

Yesterday we finally all went Nuts...no, not like that, we had our first outing to our local single A baseball stadium. The Lansing Lugnuts. Quite a name isn't it? As we drove up to "Oldsmobile Park" Zachary said, "what's an Oldsmobile?" Exactly. That is what has come of Lansing!

It is actually a nice little ball park and the boys really enjoy going. Daniel really enjoys baseball. He sat and watched all nine innings. He comments and cheers where appropriate. Last night one comment took us by surprise. When one of the Lansing players hit a fly out to left field and the "Loon" (yes, the other team were the Loons) caught it, Daniel said, "Damn it". What? I have never ever heard him swear. I actually have taken an odd sort of pride in the fact that he never swears. We try very hard to clean up our language especially since he repeats everything! Todd and I looked at each other wide eyed and surprised. We asked where he heard that and he said "from the HP tour guide on you tube". Great. We were very impressed with his ability to use it in the right context. Are we stretching it now? Talk about looking on the bright side! We did explain that it was not ok to say that word and gave him some options of other words. What an interesting beginning of the game!

Our neighbors had invited us to join them at the game and since we had promised the boys we'd take them AND we were miraculously in town, we happily accepted their offer. Daniel really wanted someone to hit a home run, which never happened, because he loves to yell, "It's going....going....gone!" He waited the whole game and it never happened. Damn it!:) I am always amazed at the fact that he'll sit there for nearly 3 hours (with a few snacks being delivered) and watch the game in it's entirety. He does get a bonus of LAFCU(Lansing area federal credit union) fireworks! Yeah, fireworks. He LOVES fireworks. You would think the noise would scare him to death, but he sits and watches and the visual stimulation far outweighs the noise. It was a beautiful night at the ball field. A fun time with friends, but unfortunately the Lugnuts lost. Damn it.

Neighbor Jacob enjoying his cotton candy, with Alex next to him.

Daniel and Todd watching the game

Zachary and Daniel, after the 7th inning stretch

Back to Reality with the Boogie Woogie Sheep

We are back to reality. Even though it is only August 14th I'm in full on school mode. Classes don't start until September 8th, but Daniel has a big transition this year and everyone is working to make sure it goes as smoothly as possible.

I returned from vacation to have a meeting with the social worker and the new principal. (She was the assistant principal last year) to discuss the proposed schedule changes. I had blogged before the eastern trek that the schedule we proposed at the IEP wasn't going to work. It wasn't logistically possible. He is in 7th grade this year with 6 hours and switching classes every hour. There are only so many options each hour and it didn't work. I applaud them for calling me in JULY to let me know and bringing us together to work it out. I ended up going with their recommendations. They obviously went about it the right way, because at the moment I'm feeling better than I ever did about the original schedule. I always had unresolved issues with the original schedule that I couldn't quite explain. It wasn't sitting right in my gut. I believe I expressed that here months ago. Those feelings are gone. I am a true believer in my gut. It is never wrong. The times I'm wrong I go against it or I can't find another option. Afterward I'm always all, "I knew that was wrong, why did I do that?" So, I'm feeling ok now.

This is now how his schedule is laid out.

1. Computer applications (new as of this week. Daniel and I are excited. What a great way to start his day) Apparently this teacher (male) is great and gets lots of "our kids". I'm going with the recommendation.

2. Co taught Science. Co taught is the new way in our district. They are general ed classes that also has a special ed teacher in it. It's expensive for the district, but the best of both worlds. PLUS his para will be in there. That makes 3 adults, at least. In at least one of his co taughts there is another para, making 4 adults. Nice.

3. Co taught Math, pre algebra.

lunch

4. Reach. This is a half hour time that all kids have. You can get help with subjects, may have social work time etc. It has a teacher during it, but is sort of a down time.

5. Band. Five days a week. That will be a huge change. That reminds me, I have to email the band teacher about an instrument...Band was a must have and part of the reason his schedule wasn't super flexible. Not negotiable.

6. Resource English. We are concentrating on reading this year. His understanding of language is very poor, even though he presents differently. He can read words at grade level but comprehension is testing at 3rd grade. Usually with a concentrated effort we have been able to help bring a subject up. The problem is you can't concentrate on everything at once, so you have to pick and choose. We are choosing reading as the main focus. He has always been with his peers for English for the socialization part. This is a big change.

7. Academic support. The same special ed teacher who is in his co taught classes and reach is in here. Daniel can do homework, maybe speech 2 days a week for part of it, organize the day, reteach or preteach math for the next sections, get things ready for home.

Notice no social studies. We dropped this for this year. See the language in #6. It all goes completely over his head. My hopes and dreams are we get his language up and this can come back. A girl can dream.....

We spent part of the morning at the school yesterday. I brought Daniel and a very reluctant little brother to the middle school for a personal tour. We got his locker assignment which this year there involves combination lock. He practiced it on two different occasions during the tour, many times, without a whole lot of success. I can tell, he'll get it. ALL kids need practice, I KNOW I KNOW. Everyone says this to me. The thing is when all kids need practice Daniel needs 10 times more than they do. His fine motor isn't great. He has the combination memorized. He told it to me last night! But he can't get it from his brain to his fingers. Road blocks. Disconnects. It's amazing to watch it at work. How frustrating to know something and not be able to get it to happen. But he will. I know it.

We walked around to all of his classes. His English teacher was even in so he met her. It was one hour and he was visibly EXHAUSTED afterward. His gaze was diverted, his eyes glazed over and he looked like he was about to shut down. Then the principal came up and introduced herself to him. He was done, which she didn't know of course. I was impressed that the social worker who really doesn't know him, caught on and immediately said, "he's taken in a lot and I think he is done for now!" The principal was kind and wanted to make a connection. She said hello and shook his hand. Daniel then started talking about..... "The boogie woogie sheep".

Principal-"I don't know about them"

Daniel-"they dance"

Sigh. His first interaction with his principal was talking about the Boogie Woogie sheep. Now that I think about it, he was saying he was tired and I realized he went the whole tour NOT talking about videos etc, which is perfectly appropriate. But his limit is usually an hour and that's how long we were there. Which is giving me an idea....More on that later. If you are interested, here is the video of the boogie woogie sheep. You can see how he would have thought of this in his exhaustion. Ernie is keeping Burt awake and it's frustrating Burt. It's amazing how his mind works! At least the school has some idea what to expect!

Vacation adventures continued...

The next leg of our vacation brought us into Massachusetts. My mother was born there. She died 16 years ago, but she has two siblings who raised their families in Mass, so I have many many cousins, as well as aunts and uncles still in that area. A family reunion was the actual starting point to this whole vacation. I used that as a point to work out from to find interesting things for the kids to do.

I prepared Daniel for the reunion by printing out pictures of as many people as I could with their names by them. I knew it was going to be a lot of new people, all who want to please him and be friendly and he wouldn't know what to make of most of it. The reunion was to be held at my cousin Jimmy and his wife's Debbie house. Because his brother and wife live right behind them, we refer to it as "the compound" since so many people live in a block area. The good thing for us is that they have a pool. If there is one thing to relax Daniel it is floating in a pool, so all we really needed was good weather. We started out the festivities Friday night going to my cousins. This was after an 8 hour drive, mind you. We were all exhausted. But we checked into our rooms, I unpacked and organized everything since we'd be there for 4 nights. My borderline obsessiveness kicks into high gear when I'm in a hotel room. I need to know where everything is. Four nights allows me to unpack and organize it all. We had a one bedroom suite allowing us some separation if needed, and I knew Daniel would need it! We went right over to Nancy and Billy's, the other family on the compound. Including the 8 of us who made the drive together, there were probably 18 - 20 people there. In my rush to their house I didn't bring anything for Daniel to "do". Often, I bring his Nintendo DS or something else to keep him amused. He seemed about "done" anyway, so we knew it would be a short visit.

He did amazingly well and spent most of his time perched on a stool in the center of the kitchen telling his "stories" to whomever would listen. This consists of repeating videos. The majority of these relatives haven't been around Daniel since he was four years old, so I don't know if they really knew what to expect. Some read this blog occasionally and some contacted me ahead of time to find out what would help him be the most comfortable. What a lucky girl I am to have these people as my relatives! Nancy had FILLED here refrigerator and pantry with the things that would make her an instant hit for both of my boys. It worked :) Nancy was the woman with chocolate chip ice cream and regular cones. A sure way into Daniel's heart. She also had Italian ice for my allergy ridden Zachary. That is such a kind gesture isn't it?

The next day the weather gods provided again and it was sunny and beautiful!! The pool was open and the kids took full advantage! People were beyond kind with Daniel trying to engage him. Sometimes it even worked! We were at their house from about 12:00 noon to maybe 10:00 at night. We had brought a portable DVD player so there was a considerable amount of time that he escaped to the house to watch movies. I have to admit, it gave us the chance to have fun too, but that is a long time. He needed the escape. I don't think I can expect him to say engaged that whole time. I like to aim high but give him some back up in these situations. In this case it was his DVD's.

In this leg of vacation we also went to Boston for a day. We took the commuter train into town. This on it's own was a big deal. Daniel LOVES trains. Shocking? Not really! Here are Todd and Daniel waiting for the train.

The picture below is by the Old North Church on the Freedom Trail. It was HOT this day in Boston. The most interesting part of the day from an AUTISM standpoint....

Right after this we went to lunch. In a restaurant. Not any restaurant but a SPORTS Memorabilia restaurant, filled with TV's. Not one or two, but A LOT of tv's. He was stressed at first. We assured him the evil Belle Tire would not be present. I have talked about Belle Tire here, here, and here. After 2 or 3 minutes of sitting there with his hands over his ears stressing we convinced his that in Massachusetts there are no Belle Tire commercials. I had written this in his social story too. ( I didn't even say the Belle Tire "name" as that is too much stress.) This was a HUGE success. He actually sat in a restaurant surrounded by tv's. I know we have much work to do to get that to happen around here, but it has to be a huge first step right?

The next leg of our journey was to Cape Cod. We stayed here for two nights. We had an indoor and an outdoor pool at our hotel, we were in the middle of it all. The best Daniel story was when we went to the ocean. He ALWAYS bends down and picks up rock and throws them into the water. He was out in the water and had been the whole time we were there. Todd was out there with him most of the time, (apparently the water was crazy warm? I wouldn't know) but Todd had just gotten out. Daniel leaned over to pick up his next "rock". He looked at it as it was in his hand and he screamed "AHHHH A CRAB" and threw it through the air! Yup he had picked a crab up right off the bottom of the ocean. I think they were BOTH surprised. He likes to tell people that story now and I think it will be a good one for him to share with his peers! He did not get pinched, but he likes to say "the crab asked me why I was picking him up?" What if he really did? :)

This second picture was after he threw the poor crab and decided may be he'd stay closer to the beach.... This is me, trying to get in a picture, because I always have the camera. I took it of myself. Good thing I have really really long arms!

Our trek home was now all the way from Cape Cod to East Lansing. It's a haul. After fueling up with a huge breakfast we left the Cape about 9:30 am. Our intention was to stop somewhere on the way but we drove STRAIGHT THROUGH. We were home about 11:30 pm. Unbelievable. I would have never thought we could do that. The boy did an amazing job! We are so lucky. I think the adventure turned out to be a fantastic experience for everyone. Now Todd is wondering when we'll be driving to Florida? Um, what?

No Fear

My best intentions where thwarted in terms of blogging on vacation. I wrote one. As I suspected trying to look back on the whole vacation, my mind is boggled up with so much information I can't keep it all straight. As a friend of mine told me after looking at my pictures on facebook, "it looks like you were on three vacations". She's right. We packed in a LOT of things in this vacation and were moving all the time. My children were so thankful to get home "and do nothing". I can't decide if that is bad or good? I do know that I was ready to sit down in my own house and do nothing, except that I have piles of laundry and suitcases spread out taunting me as I sit. Vacation part 1 is Niagara Falls. . .

As I mentioned the drive went well, as soon as Daniel discovered he could use his Ipod and not get car sick. He'd periodically yell from the back seat, "I'm not car sick!" "I'm so happy I'm listening to music." It all makes so much sense. I love when we figure something like that out, but it makes me want to slap my forehead and say DUH, why didn't I think of that before? Better late than never will be my mantra.

We were so lucky weather wise on this trip. It's like "someone" said "the Sneathen's are here, clear the skies". That "someone" knew Daniel wouldn't be able to take a thunderstorm on top of everything else. The day we arrived in Niagara Falls was gorgeous. I mean GORGEOUS! The day before it was pouring rain and gloomy. People said it was one of the best days all summer and it was there just for us! Egocentric? Possibly. I just felt BLESSED that it happened. We arrived, dropped our things and headed out to explore for the next 4 hours. Here is Daniel in front of Horseshoe falls complete with a glorious rainbow that stays and stays. Daniel's two favorite things, together for continuous viewing pleasure. It's a beautiful place. If you've never been you should go!

During our exploration, we went on the Maid of the Mist. (which you can see over my shoulder in the above picture) Daniel was getting annoyed with the long walk to the dock. It was pretty far, and it was pretty warm out, so we were all feeling it. Luck was once again on our side. We got to the long line for tickets and they opened a new line. We jumped into that line and avoided the complaining and waiting that would have followed.

Our theory is "no fear". We could have worried about how Daniel would handle all of this, but we just forged ahead and told him it would be fine. It seems to work. He was unsure, but we keep reassuring him. We were leaving the next morning so we only had so much time. Daniel had said he wanted to ride on the Maid of the Mist when he saw the video on the internet. Todd and I knew that it would be stressful for him, because as much as he likes the water, he likes to be submerged in the water. He is not a fan of a light mist floating over him, especially with clothes on. He is very very concerned about peoples clothes getting wet. It is very upsetting. We keep trying to reassure him that everything will dry, it's no big deal, but to him it is. So part of me was nervous about his reaction. I was just moving forward with my new found no fear attitude.

We donned our "complimentary souvenir rain ponchos" and waited for our boat.We chose not to run to the top front where you get soaked for obvious reasons. Daniel was quite stressed but probably only we would have noticed. Everyone is too excited about the ride and not paying attention to the kid worrying about his shirt getting wet. He wasn't making a scene, but if you know his facial expressions you could see the worry. It is an amazing view! The power of the falls is remarkable. The boat gets right up to the bottom of Horseshoe falls and stops for a while. It felt like we were inside that permanent rainbow. You could see the colors around you. I could also feel when Daniel relaxed. The air changes around me and he actually started to enjoy what he was seeing. Todd and Zachary ran up to the top, which sort of stressed him again, but I stayed with him and reassured him, that we don't have to worry about them.

It is so powerful for him to see for himself that what we are telling him is true. I think we know what his limits are and are very respectful of that. He needs a push. I know what he'll like. In these times, he learns so much about acceptance. It empowers him to move forward, to take a chance to see new things and not be stuck in his world. It can be uncomfortable at times, but it is so worth it. He is so proud of himself when he does something that is hard for him. Aren't we all? Aren't those the things that help us all grow? The things that leave us feeling better about ourselves. When you are armed with that, anything is possible. Granted, the things I'm talking about are pretty small compared to most families. I understand that our standards are different. We try to work around them. As with any of us, we are doing our best. If you don't have a child like ours in your family you probably won't understand, but there is a fear that comes with it. We are always fighting it. This whole vacation was about trying new things. I knew he was ready or I wouldn't have attempted it. No Fear.