What a terrible start. Alex went to bed earlier than usual last night, but he still woke up later than usual. He said he was sick and couldn't do school. Every move Emily made started him shrieking. Emily was more clingy than usual, and she was running a fever--poor little thing. I gave Alex his medicine and breakfast and told him school was starting in 30 mins. We made it through phonics--barely. I used the music from SSW&R, and Emily decided that she did not want to hear me sing, so she threw a fit. Meanwhile, Alex was getting more aggitated. By the time we sat down for Reading I, he had had enough of Miss Emily. I finally resorted to a video in the other room for her, and she fell asleep very shortly. I know this means she is not feeling well.

Even with Emily out of the picture, Alex was not attending and was very irritable. He got something in his eye, and the screaming began. He would not even let me look at it. I took him to my room, told him to lay down and to come and get me when he was calm and ready for me to look at his eye. After about 10mins (aka an eternity) of screaming and fit-throwing, he came out and let me look. Whatever was in his eye was gone, thanks to the tears. We talked for a few minutes, and I asked him if he was ready to finish his work. He told me he didn't want to do school because "it takes a long day." I explained that if he could not work with me at home, he had to go back to regular school. I also told him that at home, he gets through his work much faster, and he could even be finished before Laura got home if he started soon. That perked him up--he loves to finish first! The rest of the lesson went relatively smoothly, even though after he subject, he tried to talk me into skipping something.

It was so hard knowing what to do today. I want to keep school fun, but at the same time, we are both going to have to learn how to make it through challenging days and days where he isn't feeling well. I also want to make sure that I don't lose my cool with him--that was extremely hard today when he was throwing a fit about Emily or screaming about his eye. I am glad (and a bit amazed) that I did keep my cool through all that. It was bad enough that I wanted to cry.

Alex is now happily playing with his HotWheels set, and he even let me use one of his cars. I got a big, "I love you, Mom!" with a smile. I'm calling today a success.

Alex did very well today. I did notice that he was having difficulty staying still, but he did focus. Have to keep an eye on that. With the additional subjects, school is taking about an hour longer. I broke up the day with lunch time, and that seemed to be good for him. I'm trying techniques suggested by his OT about slowing his speech and his body movements down. I take for granted that I can either speed up or slow down whenever I wish. With Alex, he is on high speed all the time, and slowing down is challenging. I always reward him by letting him go fast at the end--he loves it.

On the other hand, I've been trying to do the deep breathing and other calming techniques that the therapist recommends--Alex wants nothing to do with those!

Last night we went to Sparks for the first time in months. Alex was hesitant at first, but when he saw the kids running relays, he jumped right in as I escaped upstairs. I came back to check on him, and one of the leaders told me that Alex was participating in the small groups! When I came down to get him and Laura at the end, he was grinning and playing happily with some of the other boys. He even asked me if he could stay longer.

Alex isn't feeling well today. And in combination with the fact that he has been on mid-winter break for 2 days, he struggled a bit today with the length of his lessons. The odd thing is that we got through everything in just slightly more time than usual. We added the reading and seatwork from the curriculum which replaced the reading that I was adding myself. By the end, he was settled, but definitely DONE for the day.
=o)

Cursive continues to amaze me. Today we learned how to hook two cursive letters together. Alex loved it!

Just five days later, I am simply THRILLED with Alex's progress with both the new curriculum and with cursive! Cursive seems to have clicked with him! I am trying to make it as fun as possible with little sing-songy ways to present the letters. For instance, Alex's cursive "i" looked like an inverted "v" because he was spreading the letter out. I told him to "start with a tail, go up to the line, trace it back down, and end with a tail" all in a silly voice. It...was...magic! He has a tendency to want to rush through things, but I told him that writing was a time to be slow and careful. He takes such pride in his writing now!

Thursday was his genetics appointment. It went well, and I liked the doctors who examined him. The good news is that they could not pinpoint any genetic disorders upon the intial consultation. However, he does need an "echo" for a heart murmur they picked up, physical therapy for his hyper-flexibility issues, and he needs to see a pedi opthamologist. They are running tests on his bloodwork--specifically a microarray to test for chromosome issues. I was fairly freaked out by all this on Thursday, but I am much more calm now. Whatever happens with this, he is still our sweet, wonderful Alex.

Alex yelled at his therapist this week. I want this therapy to teach Alex how to tell us what he is feeling. He can express his emotions, but he can't really put a name to them if someone were to ask him what is wrong. (I really want Alex to be able to tell us what he is feeling and if something is bothering him--specifically. Right now, he only uses the terms angry and nervous interchangeably and inappropriately.) I think the therapist thinks we are trying to get Alex to express emotions. (Mental note, bring that up that little clarification next time!) Well, Alex handled all the wheedling very well until the guy asked him to draw a picture. He did it--very unhappily. Then Alex put the pencil behind his back and was sort of rubbing his back with it. The therapist looked shocked and almost grossed out, and he asked "Are you erasing your back?" Alex shouted-loudly--"I'M NOT DOING ANYTHING WITH MY BACK!" I was completely shocked that Alex shouted like that, and the therapist looks up at me so truimphantly like--"See! See! We got him to express emotion!"

I wish I was quick on my feet in situations like this, because right now this is so funny to me! The poor guy pulled me aside and said, "I think we are really making a connection." I just nodded dumbly, and now I'm thinking, "Dude, you are in the enemy camp now. You made the boy draw and then you made him yell at you."
=o)

Day 1 with the new curriculum:

We had a rough start. =o)

Alex wanted to blow through everything to get to the "prize box." (I made up a sticker chart for Alex to use as a schedule of daily events. As he finishes a task, he gets to put a sticker in that space. When he is finished for the day and gets all of his stickers, he gets to choose a small toy or a piece of candy.) I finally stopped the lesson and sat there. I told him calmly that I had all day, and I would sit there until he was ready to continue. Much to my relief, he did great after that.

I started Alex on cursive writing today. It was agonizing. However, I'm committing to this plan for 2 weeks. If at the end of those 2 weeks he is still as frustrated as he was today, I am going to switch back to manuscript. I feel that cursive may actually help him because he will not need to pick up his pencil as much and the letters b,d,p, and q are uniquely different. Time will tell, and I am not that concerned that Alex was resistant--he is resistant to anything new. I'm guessing that by Friday, he will be okay at least.

We worked on phonics, starting with the vowel sounds. He is still confusing I and E, so I am glad this curriculum is starting with these two letters. Then we did writing, math, poetry, and reading. This week is abreviated in the system, and next week we will add reading, seatwork (independent work), and activity time (science, art, or social studies). Alex seems to like the materials--they are fun and colorful. What a difference from the black and white sheets he was bringing home from school. Just adding color really appeals to him!

It is sunny today but COLD! Alex really wanted to go outside to play on his scooter, so we bundled up and braved the cold while we waited for Laura to get home. We've been missing the outdoors because of all the snow, and we had a frosty good time out there. (To illustrate how cold it really is here, today is trash day. The trash bags froze inside the trash containers, and the garbage guys couldn't get them out.)

I ended up in Alex's Sunday School class today. I am the Sunday School partner for a little Kindergarten girl in our Special Needs ministry. Basically I just go with her to Sunday School and if she needs a break or other attention, I am right there dedicated to just her. Alex has a partner too, and today the 1st grade and the Kindergarten classes were combined, so I was sitting in Alex's room. He did really well, behavior-wise, but it is becoming increasingly more apparent that he is "different." He has been in this class for months, and yet he doesn't even look at the other little kids. He answered all the questions that his teacher asked him, and did exactly what he was told to do. I got to wondering if this is the version of Alex that his teacher saw. Polite and quiet, easily ignored and forgotten when you've got 12 other kids who are more needy and disruptive. As a Mom, I knew that the expressionless look on Alex's face was him withdrawing. I can see how a classroom teacher would absolutely love a kid like Alex and think that he was just being compliant.

We are going to have to seriously beef up his social interactions, specifically with play. I'm glad I got this opportunity to see it in action though, and I am feeling much better that the school portion is not going to hinder his social skills--he wasn't getting the right kind of social training anyway.

Alex's new curriculum arrived on Friday. I got my week's lesson plans together yesterday, and Alex and I went to Target to get some more supplies and prizes to use at school. I'm nervous, but sooooo excited about getting this really going!

The last two days have been really great with Alex. The frustrations seem to be easing, and he seems much happier. I am very pleased with his attention to his school work. Yesterday was library day, and Alex wanted to check out books on electricity. He got his very own library card and even checked out a special book for Laura. Today was Camera Wednesday, and we worked on a scrapbook page together about electricity. The pics are of Alex pulling the emergency cord for the garage door opener--he was thrilled!
=o)

I took him to the psychologist that the psychiatrist recommended yesterday, and I am hopeful that he can help us fill in some more blanks left by the neuropsych testing as well as work with Alex to express his feelings. We have a genetics appointment next week--our list of specialists continues to grow exponentially. Even so, I do feel like we have more answers right now than we have ever had.

Back to school--Alex is struggling in math. Even basic addition is a challenge. It is no secret that I loathe the math curriculum our school district is using. It was definitely not written with a special needs child in mind. The curriculum kits that I ordered should be delivered tomorrow, giving me several days to sort through it. I am particularly excited about the math program. Imagine teaching kids about money by showing them pictures that look like real money and not this crap they were using in the district!

Late November. Alex looked terrible. He was thin, pale, and lethargic, and he rarely smiled. Just not my "Sunshine Boy."

Early December. This picture was taken after Alex had several days of "rest" at home with no school. He was happy and playful--lots of energy! During this time we were debating about homeschooling again.

End of January. This picture was taken around 10pm on the night Alex and I had a heart-to-heart. Again he was pale, highly irritable and not sleeping well, as he had been since the beginning of the month. I removed him from the school the following day.

We started homeschooling again today. Alex has been in the a center-based special education program since January '07. Kindergarten was wonderful for him! He loved his teacher, and he loved school. (We started him on Ritalin, and he did okay, but the side effects got the best of him and we discontinued it over the summer.) Alex learned a lot and progressed beautifully in his Kindergarten program. He was happy and had a few good friends at school. We had a very pleasant summer and started him on Adderall XR just before school started again. Alex went back to the center-based special education program for 1st grade.

Things fell apart. On the first day of school, some one yelled at Alex to "STOP SHAKING THE TABLE!" Alex came home and quoted that phrase with inflection. We still don't know who said that. A few weeks later, Alex was bullied on the playground by two 3rd graders, and Alex hit one of them. I had a meeting about this because I felt strongly that 3rd graders should not be on the playground with the little ones at the same time, and I was upset that there was not enough supervision. Alex's teacher tried to keep the class separate as much as possible, but Alex continued to be afraid of recess at times. Alex got very sick and missed about a week of school. He never fully recovered, and October and November were terrible months. Jason and I are convinced Alex had something like Mono because he was weak and so tired, even when we took a break from the Adderall. He was so unhappy! Every morning he would wake up with a headache or a stomachache or both. He would get off the bus in the evenings completely expressionless. It frightened me! He lost weight and looked terrible. We went to frequent doctor's appointments, and nothing was "wrong" even though he never got well after the second bout of illness in October. We decided to pull him out of school in late November. He improved greatly in just a few days. We went to Disney World the last week of November, and we had our old, happy Alex back. When we got home, we spoke with the school and rather than pulling him out completely, they asked if we could try something. They started giving Alex frequent breaks. This seemed to help him, and he had a great December. In hindsight, Jason and I agree that the holidays and all the fun activities probably had more to do with this than anything else. In January, the cycle started up again.

Last Thursday night made our decision for us. Alex was having an increasingly difficult time sleeping, and again he was deeply unhappy and frustrated. (He was getting more frequent conduct notes at school as well.) I was laying down with him to try to get him to go to sleep, and he started pouring his little heart out to me. Here's the post I wrote on the e-board I frequent:

Alex has not been sleeping well. I'll lay down with him, and he will just start talking to me like I've never heard him talk before. Most of the time it is about his obsession du jour--a game or the dog or the attic. Sometimes it is about things that are stressing him like death (very difficult one), but we can talk and I can reassure him. He will get quiet after this and whisper, "I love you Mama." Last night's conversation started out with, "I don't want to play with mean kids." Then he asked me how to get the yuckies out of his heart. Turns out he thinks the bad things that other people do to him make him a bad person. He told me he wanted his heart to be pink again. He told me that he didn't follow directions at school and his teacher yelled at him. He told me, "Mrs. P is mean," and "they are ruining my life." (Where in the world did he hear that phrase "ruining my life"???) Then he told me, "When Mrs. P yells at me, I get very nervous and I cry. I don't want to go to school anymore." The last several days, Alex has gotten marks on his tally sheet for not following directions, but his teacher is not leaving notes anymore. I have written back and gotten no response. The last note she wrote was asking me if Alex had had his meds one day. He did have them, and I asked about what happened and got nothing. So, at 10pm last night after he told me all this, I called the team leader's VM and left a message. DH wants to wait until we get the new ADHD meds and assess the situation then, but I don't agree. I don't think new meds are going to fix a bad fit. Alex's teacher is certified in EI (emotionally impaired) and her approach does not fit Alex. I know she is a good teacher for the EI students, but not for Alex. He doesn't understand her or the things she expects him to do. So, he acts out. Yes, he should be following her direction, but most of the time these issues are about transitioning from one thing to another--a classically hard thing for children with autism. When he has a transitional issue, he gets yelled at. This feeds into his anxiety, and he comes home a shell of the kid he should be.I've posted about pulling him out. We are working towards that, and we have his OT in place, but I don't want to pull him until we have other supports ready to go. Namely speech therapy. But, from all this, it looks like we can't wait anymore. We are considering a change of schools--there is one other center in the city--but I wonder how such a huge change will affect him.

It was agonizing to make the decision, but on Friday, I met with his IEP team and pulled him out of school. They will reconvene the IEP when they get confirmation from the state that he is being homeschooled to set up continuing speech and OT.

We also changed meds on Friday to Focalin 2.5mg. It seems to be okay. It is not the long-acting version, but I was able to get through today's lesson without difficulty. I am okay with the small dose just to get him through schoolwork. Later we may have to up the dose, but for now, it is fine. He is still easily frustrated, but so much better than last week!