Cutest Blog

Wednesday, September 28, 2011

May 3, 2011 Daniel is George Washington

Daniel’s MRI came out the same as last time so no growth. Yeah!!!! We go through it again at the end of October. We went to the oncologist yesterday. He invited Daniel to a camp for kids with cancer. It would be an all week overnight camp. The forms were due yesterday also. We decided to wait a while. I don’t think he is really ready to be away from family for a whole week. He doesn’t even get babysitters that aren’t family very often. He is so funny. Whenever we are talking about doing something, he is right in the middle of it asking, “What about me?” Oh, and he is George Washington for the elementary's Living Museum this Friday so we are busy trying to get him to memorize a speech. I had to shorten a bunch of sentences for him. He was struggling with words like, consider, and famous. He can’t remember words he doesn’t know the meaning of.

John is his same old defiant but totally sweet self. He is really hard to explain to people. Yes, he is throwing fits at least 3 times a week (that is a very good week) up to 3 times a day (a very bad week) but that is only an hour or so a day. That is funny to write. Most people would freak at that. Eric really made that easy with his day long temper tantrums. An hour (usually about 20 minutes) is nothing in comparison. Your persistence helped inured me to his constant, I want, I want and Mark’s OCD (you know the just right bowl with the just right spoon or the just right shirt) helps with John’s and Daniel’s need for sameness. God really prepared me for John.

April 18, 2011 John is so intense when he is obsessed

John is the same. He did much better at church this week although he didn’t want to get ready to go, but when it was time to leave, he came quietly. He is doing pretty well in YCAP as well. They are trying to slowly assimilate him into a third grade classroom again. John really likes YCAP so I don’t know how that will go. He is echolaliaing(sp?) all over the place. It is all from PBS and Brainpop so he sounds really intelligent. I don’t know if he understands any of it. He starts, “Did you know…?” It is pretty cute. Yesterday the people sitting next to us had an IPad so now, instead of drawing DSs, Computers, or laptops, he is drawing IPads. He gave everyone he could find a picture of an IPad. He is so intense when he is obsessed.

Daniel got to go to the Butterfly Museum on Thursday. He enjoyed but he told me that none of the butterflies landed on him. I told him before he left that they might come to him if he was still enough. After, I told him there was probably too many kids and too much noise. He is doing great. I’m stressing though because the MRI is on Friday. I always stress before that. I won’t know the results for another full week after that so don’t expect any news soon.

April 11, 2011 “I have no idea what you said.”

John has been doing okay. Last week was General Conference so getting him to church yesterday was a challenge. My back is sore because I had to keep taking him back to his room while he was screaming, yelling, and fighting. He didn’t hit, just collapsed on the floor. He and Daniel are about 100 lbs. now. It is really hard on my back when I have to fight him. I sure hope he learns some obedience by the time he is taller than me. That isn’t very far away. Now for the Funny John stories…When we finally arrived at church, it turned out to be right on time, we were walking by the primary room. There was a lady from Memorial Ward standing at the corner. She kind of patted John’s head as we tried to squeeze by the people standing outside the primary room. John leaned into her for a hug. She was quite surprised and said, “Oh, you’re giving me a hug!” So she hugged him and we went on our way. I just kind of giggled and shook my head. Then, because of it being the Sunday after General Conference, when we got to the chapel John refused to enter. We sat on the couch in the foyer until the sacrament was over. Or I should say, I tried to get John to set on the couch in the foyer. He introduced himself to everyone who came in. He loves to say hi to the babies. Anyway, a lady from Memorial Ward put her stuff on the couch beside us and looked like she was in pain. I asked if she was alright. She said it was a back spasm, probably caused by the rowdy boys in her primary class. I listened sympathetically. Then John returned from introducing himself to a baby and said, “Hi, what’s your name?” She told him, but I don’t remember what it was. Then he said, “My name is John. What’s your last name?” She said a really weird last name so John asked a couple of times more then said, “I have no idea what you said.” She kind of laughed. I asked her where she was from and she told me Houston and then I asked about her name. I don’t remember the answer because just after that John said, “Where is your house?” The lady told him but John didn’t understand where it was. He also asked about living next door to us. I explained that it was a long way from us. Then John asked what her house looked like inside and she told him a little, and then he asked about the colors of her house. He ended by asking if he could come over. I told him no and tried to explain a little about not doing that. I don’t think he understood though. The lady really understood and was amused with him. I explained he had autism and she said her daughter at A&M also had it and that she figured out pretty quick that something wasn’t quite right with John. I was amused, not embarrassed by the whole interchange. John is so funny. I have to keep reminding myself that just a couple of years ago he wouldn’t talk to anyone outside the family. Now he is inviting himself over to anyone and everyone’s house. I think the pendulum swung a little too far. Lol

What do I say about Daniel? He is the same as ever. Happy, loving, kind, cuddly, and totally addicted to PBS and QUBO. I can’t think of any funny stories this week. He has really enjoyed the 72 hour kit meals and snacks but I have to be careful not to let him have the trail mix. They have tree nuts in them. It is a good thing he doesn’t really like nuts. I don’t have to hide the stuff.

April 4, 2011 Daniel was totally oblivious

Rob and Daniel have both been pretty sick.  Rob had bronchitis and Daniel had ear infections (of course).  They are both still very stuffed up but are ever so slowly getting better.  Poor Daniel had night where his ear was hurting really bad.  He had already had antibiotics for 5 days so it should have been better but I think the ear problems come with whatever is making him sick so the antibiotics aren’t working very well.  I had also given him his prescription decongestant and ibuprofin but he still hurt.  The only thing I had left to do was cuddle with him on the couch.  He fell asleep after about an hour and then I went back to bed.  It was kind of a long night.

Eric had the State DI tournament.  When he got home, Mark said, “Hi Paul.”  We were all looking at him like, “What?”  We had mentioned a Paul a little so I guess that is why.  John and Daniel totally missed Eric and kept asking all weekend long where Eric was.  A week ago Friday or Saturday, Eric was out with friends kind of late.  I was trying to get Daniel to go to bed but he said, “I can’t sleep without Eric.”  I don’t know why.  Eric isn’t even in his room.  John wouldn’t go to bed until Eric got home.  He did sleep over this last weekend though.  I should have put on John and Daniel’s calendar, Eric leave, and Eric return.  They might not have bugged us so much about when Eric was getting home.

John is doing well in the YCAP program. He is still throwing fits at school, but they are handling it a lot better than his former teachers. He wants an allowance and a new video game so we put up a chore chart for him. It has 6 things for him to do. There’s nothing terribly hard, just things like, use the toilet, straighten the rug upstairs, and brush your teeth. It has been up for 3 or 4 days and he won’t do it. He’ll get there though. Now for a story. John came into my room the other day while I was watching TV and said, “I saw Daniel in the hospital.” I asked if he was looking at the pictures we put up of Daniel on the wall. It was what he wanted for Christmas. “Yes,” he says. “Is he dead?” John looked kind of worried. “No,” I said, “He’s upstairs. Dead people don’t come back to life like they do on video games.” Now I’m wondering how to explain the resurrection and coming back but not soon. So I tried but I don’t think I did very well. Then he asks me, “What happened to him?” The picture has Daniel’s head all wrapped up. Then I helped to remember last year’s operation and about cells in Daniel’s brain that aren’t growing right. I don’t think he understands very well. But somehow I calmed his fears and he was happy when we were done. It actually was a pretty good conversation for John.

I don’t think I have any more to say about Daniel. I kind of wrote the stories earlier in this letter. FYI his next MRI is at the end of April. I probably won’t know anything until early May. Oh, that reminds me of a funny Daniel story that happened a few weeks ago. I was sitting on the couch and Daniel comes and flops down beside me. “My head hurt,” he says holding on to his head. My heart skips a beat. “Your head hurts?” I always have to check to make sure I got it right. You know how hard he can be to understand. I’m holding my breath. “Yes.” My heart is beginning to race. “Did you hit it or hurt it?” I ask. “No, spin around,” he answers. “Ohh, you were spinning and you are dizzy?” My heart slows down and I can breathe again. “Yes,” he answers. My reaction was phew. Mark was in the room with us. Later I asked him he understood why I was panicking. I’m sure he noticed. He did notice and understood. Daniel was totally oblivious of course.

March 28, 2011 “Adios. That’s goodbye in Spanish.”

John is being himself. Sometimes driving us crazy, sometimes not. Yesterday, as he and I left for church, he stopped at the door, turned around, looked at his dad for a second and said, “Adios. That’s goodbye in Spanish.” Robert and I grinned at each other. He also informed Daniel’s new primary teacher that there are over 50,000 characters in the Chinese alphabet. The teacher was really impressed. He was wearing one of those ties with Chinese characters on them like Eric has.

Daniel is sweet as ever. Daniel’s other teacher (they team teach) was loving on him during primary. He is such a cuddle bug. Today he is hopping and bouncing and talking all over the house. The Sudafed has him pretty hyped up.

March 21, 2011 Sea World Stories

John and Daniel have been as cute and annoying as ever. John is very volatile and is screaming or laughing all the time. I’ve got a couple of John and Daniel stories.

1st-I’ve had a headache for days, One time I went into my room and lay down and put my earplugs in to get away from the noise. John followed me in and climbed in bed with me bringing the SP. I sighed and told him I wasn’t feeling very well and that I needed quiet and dark. I use your dad’s pillow over my face for dark. He smiled and said, “I have it on mute” he said and put the pillow over my head. “I can use my own pillow.” He ran upstairs and got his pillow pet. Then he was totally quiet and didn’t bounce around in the bed for an hour and a half while we waited for the exedrin to kick in. He said, “Are you feeling better?” I did, a lot better. He was very sweet.

2nd-We went to SeaWorld for spring break. We stayed overnight in a hotel and believe it or not, John and Daniel did great! We had a good time at SeaWorld, John and Daniel both loved the shows we went to see and the kiddie rides we allowed them to go on, but they both wanted to go on a really big rollercoaster so I told them we would try the log thing to see how they liked it, assuming it was a little tamer then the other rollercoasters. When we finally got there, a friend who recognized us from our stake (go figure) told us it had been a two hour wait but John insisted so I got in line with John and Daniel. Mark, your dad, and Eric all chose to not wait. That was a recipe for disaster. After about a half hour of waiting John changed his mind and immediately freaked out. I grabbed the radio and tried to call your dad while hanging on to screaming John. Daniel wanted to stay. John hit and kicked Daniel so I finally gave up and took them out. By now John was totally out of control and trying to run away. It was a good thing we all had on our Autism shirts (the one with Frame Fighters knock out autism) on it. People were kind of staring at us and shaking their heads or looking sympathetic. After a long battle, we made it out of the park.

#3-On the way home from SeaWorld we were starting to get a little hungry even though we packed a ton of food so Rob and I were watching the food signs looking for somewhere to stop and take a rest and eat. After seeing and passing up, Robert’s Steakhouse and Frank’s Steakhouse, we stopped at Nancy’s Steakhouse. We were glad to pile out of the car and stretch their cramped legs. We ordered and I think your dad told the waiter to bring John and Daniel’s food as soon as it was ready so they wouldn’t freak. He brought John’s Mac n Cheese and John said, “Thank you, I owe you one”, giving the waiter a thumbs up. We all giggled a little, including the couple sitting in a booth behind us. Daniel’s food was brought with the rest of ours. He said, “Finally” with a big sigh, “What took you so long?!” Once again we all giggled a little. I find it hilarious that our waiter got a thumbs up and a finally. Living with autism (and little kids) gives lots of laughs.

February 8, 2011 Daniel has his own mind

John is doing all right. I got a message from the school nurse yesterday saying John had a bad morning. It was a Monday after an unexpected snow day so of course he was having a hard time. She said he finally plopped on the floor crying and saying his leg was broken. She said she looked at it and it was fine but for me to keep an eye on it. When he got off the bus I asked him about it. He said, “Its okay. It healed.” Lol

Daniel is really excited about his performance tonight. It is called ARF. I have no idea what that means. He brought home the shirt we had to order. He was totally pumped up about his new shirt. He has been break dancing (sort of) and doing the John Travolta move (point at the ceiling). He is too cute. Daniel has a huge red mustache and beard at the moment. He must be concentrating really hard on school and video games. He looks like a clown. It is that bad. Silly kid. He just thinks it’s funny.

The nurse called me about Daniel yesterday as well. She said he had been pulling at his ear and to use some ear wax drops to clear it out. When Daniel got home he went to get the drops and wanted me to do it but I told him to have Dad do it. So, when your dad got home, Daniel told him something like, ear…in…. Somehow your dad figured out he wanted eardrops. He is getting better at communicating with words. He is starting to use “a” and “the” a lot more and he comments on stuff like, that was cool, or it is high or something along those lines. He and John talk a lot. They get each other in a way we don’t get them. John is still trying to control Daniel though and of course Daniel has his own mind a lot of the time.

January 31, 2011 John surprised me yesterday by doing great at church

John  surprised me yesterday by doing great at church. I forgot to give him his medicine on Saturday so I expected a rough day. I even considered having him stay home with your dad and Eric so I wouldn’t have to deal with him. There were so few of us that we sat on the side behind the Leytons. Brother and Sister Leyton or John’s new primary teachers. John sat with them through sacrament, then happily went to class and just as happily went to sharing time. It was a little warm in the primary room so he kind of fell asleep. He didn’t even have a hard time waiting for Mark to clean up the chairs. No screaming, no fighting, no yelling. I was stunned. As for school…we have another ARD coming up. They need to tweak his behavior plan. They finally realized that they needed to take John out whenever he is being a pill. (Just like I have been telling them.) They finally decided I was right and found a place to take him to do his work. I wish people would listen to me. They would save a lot of fuss and trouble. I hate the beginning of each year because it is all new people. It takes until now for them to figure out I am right. We finally get what he needs by the end of the year and then boom, we are back at the beginning again. It is soooo frustrating!

Daniel is his happy go lucky self. He is practicing for the 2nd grade performance on the 8th. They are apparently doing a little break dancing and then the 70s point because Daniel has been doing that for the last few days. He is really cute. We’ll have to get a video of it. Daniel took the 2nd grade OLSAT and SAT10 tests. He did really poorly compared to the rest of 2nd graders. You guys got in the 80-90th percentile ranges. Daniel got in the 10-50th percentile. On verbal stuff, average is 50-5, Daniel got 1-1. I’m not sure you can get lower then 1-1. It is hard to explain how it works, but I think you can see he is struggling. He is doing as well as he is able though. All I can do is laugh. I knew he wouldn’t do well. That kind of test doesn’t really reflect what he is capable of. BTW, math was what was in the 50th percentile. Everything else was in the 10s and 20s. He got regrouping and barrowing really quickly! We are all surprised at how easily he understood it. John is still struggling with barrowing.

January 17, 2011 John is being a missionary

Rob and Daniel are busy in the garage making a pinewood derby car.  Daniel is totally excited about his car!
While your dad and Eric cleaned out part of the garage, Daniel was outside with them, but they weren’t keeping a good eye on him. I decided it was a good day to try and teach him how to ride a bike. I found a three step process on the internet and thought I might try it. Anyway, when I got outside, Daniel was nowhere in sight. We started searching and yelling and worrying of course. John’s kindergarten teacher, Ms. Swick (who lives nearby) was out walking a neighbor’s dog and she was like…”I just saw him in the drive way a second ago,” and I was like…”Yeah, me too…” (I’d seen him out the kitchen window). So we all kept searching when Daniel comes around that corner on our street. He was just taking a walk. I take him on long walks from time to time and I guess we hadn’t made it clear that he needed to be with someone. He couldn’t explain where he had been but at least he was all right. The most amazing was afterwards I was talking with Ms. Swick about how far John had come and how he always says hi and gives her a hug. Then she said, “He said to me the other day…what was it…oh, yeah, did you know that God is our Heavenly Father?” She said she answered yes. So, the moral of the story is, even John is being a missionary. Cool, huh.

Daniel has been really cute today. He put on your dad’s wide brim hat and the hiking boots Mark and Eric have out for Robotics and told me, “I am a cowboy!” He is so cute! He was pretending! Something to rejoice at with kids with autism.

January 10, 2011 A weird thing just happened

John saw the picture of Chris sitting in a restaurant or something and said, “Who is that?” I enlarged the picture so he could see it better. He said, “Oh, that’s my brother Chris. Where is he now?” I said, “In Santa Marta, Colombia on his mission.” John said, “I miss him really much.” So, I told him I would tell Chris when I wrote him today what he said. He smiled. He is really excited about his birthday today. He has been asking for Warioware (mumble mumble) and DDR. I asked him this morning which one he wants today. Warioware something, something, something. Mark and Eric are going to give him the Wii points they got for Christmas so he can have it. I have DDR extreme 2 for him as well so he will have a great birthday. He has a science project thing due tomorrow. I have no idea how I am going to get him to do the tri-fold board on his birthday but the Science fair is tomorrow night so it has to be done. I think I will skip spelling.

Daniel has his bright red mustache, again, and now his hands are getting red as well. I have no idea what to do with him and the licking. Winter is really bad for dry skin as well and he sounds pretty stuffed up. I don’t actually know if it is a cold and/or allergies. He is just having a hard time with the nose thing. Other than that, he is great. The exercise trampoline we got him for Christmas has been great. He and John jump on it all the time. It is good for them.

A weird thing just happened.  John decided he didn’t want to take his medicine.  I explained what his medicine was for and he said, “I won’t be afraid of water.  I promise.”  I tried to explain that that was the most obvious but that a lot of things make him nervous and that he gets it from my dad and me.  I don’t think he understood.  I ended up just shoving it in his mouth.  I think he doesn’t want to drink the chocolate milk I make to get rid of the bad taste.  I guess I will have to switch to juice or something healthy.  He sort of gets the nutrition thing, but not quite.  He is so funny.

January 3, 2011 Everyone is enjoying their new games except John

Everyone is enjoying their new games except John. We got Wii points and he has been begging for some Wario thing ever since Christmas. He is driving everyone crazy. I’m thinking maybe for his birthday so he’ll stop bugging us. That is if we can stand it that long.

Daniel is really beginning to hold conversations, sort of. We got a new bed, (I think you may know that) but it will take about six months to really break it in. Once Paul left, your dad brought down the pillow top mattress and put it on our bed. It added three more inches on top of an already too high bed. Daniel said, “That bed is so-o-o big! It is too high!” He carried on a conversation for a while with your dad about his vegie tales game, which he loves and has been playing almost non-stop for a couple of days now.