Things have been so crazy-busy lately. Since June 18th, we have been to Utah for 4 days, home for 5, then I left for California for 4 1/2 days, home for 2, back to Utah for 4 days, home for 1 1/2, then to Boise for 2 days. We managed to be home for a week before spending a day at Girls' Camp, cooking for the Stake leaders. The next day I headed for Stanley to participate in the Mountain Momma's Craft Fair. That lasted 2 days. I am now home and so happy to be here, with no major things happening, relatively, for a little while. John does have Helaman's Camp for his priest-age boys next week, and in 2 weeks we will go back to Utah to spend a day with ALL the kids together. Taya & Kaleb will be up, so we are going to all be together. That will be awesome!
Anyway--In all this running and going, I have worried about how J would handle it all. Did I mention we also survived another seizure, and a panic/anxiety attack during all of this? In spite of it all, he really hasn't done too bad. It could have been much much worse. We have a month until school starts. I sure hope we can keep on a schedule and be ready for that. I have confidence that we will.
My challenge right now is getting him to keep the tv off during the day. I get distracted, cleaning and working, and don't pay attention to what he is doing, most days. Yesterday, it was afternoon before I realized he'd had it on all day. Today he is quite a bit more mouthy and sassy, thinking he is funny.
I took him with me when I went to Stanley last friday night. John came up the next morning and stayed a few hours, then took J home. I quickly figured out that wasn't a smart idea, to bring him with me. We were trying to set up Saturday morning and he was all over the place. For a little while, he made a friend who loves legos, so they sat under a tree for a long time, playing. After that, he was all over the fair, talking to people, making animal noises, etc. My stress level went thru the roof, trying to set up and keep track of him. Being my first fair as a vendor, that stress alone was phenomenal. Add trying to keep track of the boy on top of it, wow! It was a tough weekend for me. We made it thru, and lived to tell about it. But I definitely learned I don't take him with me without plenty of backup. Kim & Tyler were with me but they were trying to help me get the booth set up and ready to go. We have to have one person totally designated to watching the boy and nothing else. There was so much to see and so many sounds and smells. For a child who has the smell and hearing comparable to an animal, that is almost too overloading. And he wants everything he sees. I told him he could pick out one thing to buy, but he had to walk the whole place first, with a grownup, to see all there was, before he decided. Once he found something, and decided, there was no peace until he could go buy it. He perseverates on things so badly lately. Once he gets something on his mind, there is no peace until that happens or comes about. It doesn't do any good to tell him not to bring it up again, because he cannot get it out of his mind. Usually with Autistics, you need to prepare them in plenty of time, of an upcoming event or activity that may be a change in routine, or they will freak out. Not so with J. We cannot tell him we are going to do something or go somewhere until just before it happens, or we get no peace, and he works himself into a huge frenzy. Certainly makes life interesting.
Tonight is our ward Pioneer Day party. J absolutely loves going to these, but gets so overstimulated at them. He wants to be everywhere, talking to everyone, playing with everyone, in everyone's face, loud, mouthy and sassy. The ward members think it is all cute and funny, or don't say anything to stop him. It creates so much stress for John and I. We use to be able to skip the parties, and not say anything to him. Now he is more aware and paying attention at church, so he hears the announcements, gets the invitation, and wants to go. I just don't know. I am becoming more and more of an introvert, and just want to stay home. I suppose that isn't a very good thing either. We will just have to see how the afternoon goes. I am sure I will post an update on here.
Tuesday, July 21, 2015
Big Weeked
We went to Salt Lake this weekend. We left thursday afternoon and came back saturday. J had a dr appointment friday morning. We took the new car so there was change #1. It is an Impala, so smaller than the van, obviously. J cannot quite spread things out & have the room he is accustomed to. But he loves the new car.
He knew we were going to stay in the motel, so he was really ready to be able to swim. Our original plan was to leave early enough that we could take little S & J swimming in the hotel pool that afternoon. Unfortunately, that didn't happen. Change #2. We have to be careful what we promise because if we say we MIGHT be able to do something, it is as good as saying we will do it. Even if we say we will think about it, he takes it as we are going to do it. We really have to be on our toes and pay attention to what we are saying, or replying to.
Change #3 is staying up later than normal, and sleeping in the same room with Mom & Dad & a t.v. It always takes a while for him to fall asleep, so that means late nights. Much later than normal.
One thing he absolutely loves, when we stay in the hotel, is the waffles at breakfast. He really loves getting to eat there. He's usually pretty good, and was that morning. Just a little too friendly for my comfort, with the other guests, but we are working on that one.
The dr visit went good. We get to do a sleep study. I have to make all those phone calls today and figure out when, in the middle of our crazy schedule over the next month, we can get that done. That requires another trip to Salt Lake. I don't mind that. It means I get to see the kids again. :) After the appointment, we went to the City Creek Mall to go to the Disney Store. Had to get a couple of things for the grandson, for his birthday, that he requested. J loves going into that store. He had 3 quarters with him that he dearly wanted to spend. He still doesn't understand the money concept so, rather than try to get him to understand there was absolutely nothing there that he could buy for 75 cents, John & I told him which area he could look in to pick something out. Everything he wanted was at least $20. He picked out a car, then found a stuffed Olaf that was on sale within the price range we gave him. Olaf has been his constant companion since then.
We had one more shopping place we needed to go so headed that way. On the way we stopped for lunch, then got the shopping done and headed back to the hotel. The whole morning, all we heard was, 'When can I go swimming? Am I going to get to swim today? Can I go swimming?' This child has no concept of time, at. all. I could tell him he has 5 minutes to do finish something and 2 minutes later tell him time is up & he believes me. I cannot tell him we will do something in 30 minutes. He doesn't get it.
We finally made it back to the hotel & I took him down to the pool to swim. There was another family there with the dad & 3 kids. The girlfriend (I gathered that from trying not to listen to some of their conversations) came a little bit later. I schooled J on the 'rules,' that he was to leave them alone, not bother them or butt into conversations, and just do his own thing. For the most part, he did pretty good. It was a very hot day! They had the pool doors open and an occasional breeze would blow thru, but I only lasted about an hour and 15 minutes before I had to call John and have him come take a turn.
The rest of the day wasn't too bad. We went out to Brittany's so she could cut & color my hair. By that time J thought he was starving to death. Brittany told him there were crackers and granola bars in the food storage room & he could help himself to something. Unbeknownst to us until yesterday, he took that very literally, and ate 2 boxes of fruit crisp bars. Ugh! We just have to keep a constant vigil over him.
Saturday was the two little grandsons birthday party. They had a bounce house set up. That got J all sorts of excited. Once everyone started coming, it wasn't long before he had to remove himself from the crowd. He went downstairs and put in a movie & stayed there. I love that he, for the most part, recognizes when he has had too much, and needs to find some place quiet. He doesn't always do that, but it is good when he does.
After the birthday party, Brittany had a 'surprise' birthday party for me, since it was my birthday that day. Apparently it was John's idea to do something and he told her to put it together. That was fun! I've got such a great family!
It was late before we headed home, and didn't get home until after 11 that night, but J managed to sleep some on the way. He didn't like that the seats don't recline in the car like the van's did, but I am sure we will adjust to that eventually also. Life is full of adjustments. It is just hard for those who view things so vastly different than the rest of us, and whose understanding isn't where ours is. I am sure we will live to tell about it all. :)
He knew we were going to stay in the motel, so he was really ready to be able to swim. Our original plan was to leave early enough that we could take little S & J swimming in the hotel pool that afternoon. Unfortunately, that didn't happen. Change #2. We have to be careful what we promise because if we say we MIGHT be able to do something, it is as good as saying we will do it. Even if we say we will think about it, he takes it as we are going to do it. We really have to be on our toes and pay attention to what we are saying, or replying to.
Change #3 is staying up later than normal, and sleeping in the same room with Mom & Dad & a t.v. It always takes a while for him to fall asleep, so that means late nights. Much later than normal.
One thing he absolutely loves, when we stay in the hotel, is the waffles at breakfast. He really loves getting to eat there. He's usually pretty good, and was that morning. Just a little too friendly for my comfort, with the other guests, but we are working on that one.
The dr visit went good. We get to do a sleep study. I have to make all those phone calls today and figure out when, in the middle of our crazy schedule over the next month, we can get that done. That requires another trip to Salt Lake. I don't mind that. It means I get to see the kids again. :) After the appointment, we went to the City Creek Mall to go to the Disney Store. Had to get a couple of things for the grandson, for his birthday, that he requested. J loves going into that store. He had 3 quarters with him that he dearly wanted to spend. He still doesn't understand the money concept so, rather than try to get him to understand there was absolutely nothing there that he could buy for 75 cents, John & I told him which area he could look in to pick something out. Everything he wanted was at least $20. He picked out a car, then found a stuffed Olaf that was on sale within the price range we gave him. Olaf has been his constant companion since then.
We had one more shopping place we needed to go so headed that way. On the way we stopped for lunch, then got the shopping done and headed back to the hotel. The whole morning, all we heard was, 'When can I go swimming? Am I going to get to swim today? Can I go swimming?' This child has no concept of time, at. all. I could tell him he has 5 minutes to do finish something and 2 minutes later tell him time is up & he believes me. I cannot tell him we will do something in 30 minutes. He doesn't get it.
We finally made it back to the hotel & I took him down to the pool to swim. There was another family there with the dad & 3 kids. The girlfriend (I gathered that from trying not to listen to some of their conversations) came a little bit later. I schooled J on the 'rules,' that he was to leave them alone, not bother them or butt into conversations, and just do his own thing. For the most part, he did pretty good. It was a very hot day! They had the pool doors open and an occasional breeze would blow thru, but I only lasted about an hour and 15 minutes before I had to call John and have him come take a turn.
The rest of the day wasn't too bad. We went out to Brittany's so she could cut & color my hair. By that time J thought he was starving to death. Brittany told him there were crackers and granola bars in the food storage room & he could help himself to something. Unbeknownst to us until yesterday, he took that very literally, and ate 2 boxes of fruit crisp bars. Ugh! We just have to keep a constant vigil over him.
Saturday was the two little grandsons birthday party. They had a bounce house set up. That got J all sorts of excited. Once everyone started coming, it wasn't long before he had to remove himself from the crowd. He went downstairs and put in a movie & stayed there. I love that he, for the most part, recognizes when he has had too much, and needs to find some place quiet. He doesn't always do that, but it is good when he does.
After the birthday party, Brittany had a 'surprise' birthday party for me, since it was my birthday that day. Apparently it was John's idea to do something and he told her to put it together. That was fun! I've got such a great family!
It was late before we headed home, and didn't get home until after 11 that night, but J managed to sleep some on the way. He didn't like that the seats don't recline in the car like the van's did, but I am sure we will adjust to that eventually also. Life is full of adjustments. It is just hard for those who view things so vastly different than the rest of us, and whose understanding isn't where ours is. I am sure we will live to tell about it all. :)
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