Today autism and I are not friends.

Last week we saw doc and we expressed all our concerns about weight gain and increased intensity and duration of 'rage and destruction for no discernable reason' episodes. He decided that as much as we liked the previous med, it appears to be time for a change. So we discussed our options, and carefully (oh so carefully!) weighed the options, benefits, and risks. We were sent home with a titration pack, and did a we were instructed. All week we saw minor improvements in some areas, but he's still got a long way to go before we can say we're comfortable with saying we've got a sufficient replacement. I miss my boy, and today I have to just sit here and say: Sometimes I hate autism so much. I miss my boy, and I want him back. This kid that's here screaming and biting, fighting and spitting, throwing things and hurting his sister- thats not my boy. My boy likes to tease and laugh, play and read. And cuddle. I miss cuddle time when no one is upset or trying to hurt someone else, when we don't have to raise our voice or make threats to get things done. I miss it, and today I hate autism and I'm not ashamed to just put it out there. We even got a note from the teacher today that says she isn't seeing improvements with this med and she also used the phrase 'I want the old back!'

Why can't autism take a vacation and just give me a break sometimes??

Dear Autism, today we are not friends.

Holidays- Learn As You Go.

The day had its ups and downs. We went to a Christmas party and made it through lunch, then had a few glitches when it was time for the kids to exchange their gifts, but was still "ok." During all the down-time it got difficult, though. A lot of wandering and exploring since it was a house that we generally only see once a year. The house is constantly being renovated, and there are always new walls or floors or other major changes every year, and this confuses BW. He gets agitated and literally wants to touch every surface of the house, and every item in it. There are a lot of people at this party every year (45-50), and with larger groups, there's more people who don't understand, and more anxiety on BW's part. We're getting better at recognizing the signs though, and this time we got our coats on and said our goodbyes, and got all the way to the stairs before the howling ensued and RC had to utilize the fireman's carry. I had our medical equivalent of a fire extinguisher in my purse, but didn't use it. Like I said, we're getting better every time. I won't allow myself to get too confident with that though, because when I do, I get BLINDSIDED by a totally new kind of chaos...

Christmas Program Success

BW's school had a Christmas program this evening, and I have to say- he did remarkably! The Kindergarten students sang several songs and his teacher and aide were both on the side of the stage within arm's reach- just in case. He did sit down once for about half a song, but for the most part he was VERY good. I don't mind that he didn't sing much, I was just thrilled that we made it through a crowded event without a meltdown until it was time to leave! Of course he was eventually carried out kicking amd screaming across Daddy's shoulders, but HE ENDURED until his songs were over and they were dismissed from stage! He did make up for it later and resume the horrendous screeching and fighting that is so familiar to us.

Unrelated note, I didn't get any good pics or video because of a very rude man standing front and center taking a video of THE ENTIRE PROGRAM with his phone. One mom whispered to him to ask him to kneel down, but he acted like she didnt exist. 5 minutes later during BW's favorite song of the night, I walked the lane and politely informed the man that people behind the fourth row weren't even able to see the stage and asked him to kneel. Of course he ignored me too, but I kept talking. I told him that we wanted to see our kids, and it would be very polite of he would please find a seat near the other parents who were taking pictures. He finally looked at me and showed me his phone in video mode. "But I'm just video recording," on a very thick accent.. I said that was nice to do, but he really needs to kneel like the other parents. I then walked back to my seat, and so did he. After the show the teacher, three aides and several parents thanked me for getting him down. I'm told that this man is incredibly rude in virtually every situation and it was a huge accomplishment. Personally I don't think I said anything rude or even impolite, but I do think he realized that I wasn't going to stop talking over his video recording until he moved ;)