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!