In light of the current political climate (not one particularly given to charity or generosity), my husband suggested I keep a daily log of life with Ian ( given the very real possibility that medicaid could be cut, and we would be without services for Ian.) So let's see----last night, Dec. 3, 2010:
Lately Ian has developed a fondness for being loud. I'm not talking about normal, a little bit excessive loudness, I'm talking shrieking at the top of his lungs over and over and over. We have had emails from school complaining about this, and the bus driver and his caregivers have mentioned it many times. It is ear-piercingly, bone-rattling LOUD. Sometimes he seems agitated when he is screaming, and sometimes he seems to be screaming just for the feeling in his throat---something we call "stimming." Typical autistic stims are hand waving, tapping on hard surfaces, rocking back and forth, etc. Ian seems to like screaming. Lucky us.
John and I tried to watch a movie last night. Watching movies is an interesting experience chez McGrew. Our 22-year old daughter no longer will watch movies with us due to the constant interruptions. We have to pause the movie frequently (at least every 5 minutes on average) to attend to Ian. And since he shrieks so much, we have taken to putting on the subtitles so we don't miss the dialogue. John went upstairs several times to make sure that Ian wasn't naked in front of his window with the lights on in his room. This is a favorite activity. He also likes to go in the basement, take of his pants and smear feces or urinate on the floor. Needless to say, we don't watch too much T.V. and most movies take us two to three evenings to finish.
Last night he was particularly and persistently loud. We put him to bed around 10:00 pm (we were exhausted by then), and Ian jumped around and screamed in his room for about an hour before John went to see him and sat up wtih him for an hour. He put him back in his room at midnight and he slept until 3am. We checked on him and he had ripped off his diaper. We put on a new one and put him back in his room. He yelled intermittently until 6:30. During that time we checked on him frequently to make sure he was O.K., and had not pooped in his diaper. He tends to smear if we don't change him immediately. At 7:30 John finally got up because Ian was so loud. And this is after his nightly dose of melatonin (a sleep aid) and xanax. He was again without his diaper and had peed all over his bedding. John got Ian dressed and started a large load of laundry.
This morning (Dec. 4) I am typing this while my husband watches Ian. I am listening to the "dulcet tones" of his continued screaming and trying not to focus on the bad headache I feel coming on. At least he seems happy today, and is watching (off and on) one of the Disney movies he loves. I try to live one day at a time, with God's help, and pray that we will continue to get the help we so badly need. I live in fear that the rug will be pulled out from under us, and then I know I would be unable to care for my son at home. This loud, complicated, difficult boy that I love with all my heart.
Dec.4 (evening) I have to mention something cute: we let Ian out to play in the snow. He was possessed with brushing the snow off of every horizontal surface---it was so funny. He was so focused on his very important task! He became quite frustrated that as soon as he had one surface clean, it would become covered with new snow almost immediately. I'm certain that if we didn't make him come inside, he would still be out there cleaning off snow. LOL! Of course, when he came inside we had to change his very wet pants.
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