6:00 am Alarm goes off, have to go get John up and in the shower. John's developmental age is only that of a 4 year old, so I pretty much have to wash everything for him. He splashes me with water. I get soap in my eyes. He laughs thinking that is funny.
6:30 am Get John to dress himself. Needs to be reminded how to look for front of shirt. Needs to be reminded to pull up zipper. Needs to be reminded which shoe goes on which foot. Needs to be reminded to pick up dirty clothes. Needs help making his bed.
7:00 am Breakfast time. John can't pour cereal or milk by himself, so I do it for him. He eats with his mouth open. I remind him about good manners at the table. He talks with his mouth full. I remind him about good manners at the table. He chews and chews and chews. I remind him to swallow. He eats with his mouth open. I put a mirror in front of him so he can see how this looks. He laughs because he thinks this is f
unny. I fix his lunch while he finishes eating. 7:30 am Brush his teeth for him, wash his face for him, remind him to go to the bathroom before he leaves, remind him to wipe his butt.
8:00 am Wait for school bus to pick him up. New bus driver, so the bus is late. I remind the bus aide about John's inappropriate behaviors he needs to watch out for.
8:30 am Sigh with relief. Pour a cup of coffee to relax and read the paper.
9:00 am Start the laundry
9:15 am School nurse calls asking if John got his meds that morning. Oops. I jump in the car and drive to his school to administer the missed meds. The principal and school psychologist intercept me on my way out, want to discuss John's behavior problems at school. We resolve several important issues after one hour of talking.
10:30 Drive back home. Hear on the news about another stupid crime by some teenager who was stupid enough to do such a stupid thing and was then stupid enough to get caught. How can these kids be so stupid, the radio DJ asks his listeners. Why do they do such stupid things? I know why.
11:00 am Meeting with case manager. She advises me that John is not eligible for services with the Department of Developmental Disabilities because his IQ is "too high." His IQ of 70 puts him one point over the cut off for eligibility. Sorry, state rules.
12:30 pm Answer the phone. Another parent wants information on FAS. We talk for an hour.
1:30 pm Go pick John up from school early to take him to the cardiologist at the hospital office for follow-up from heart surgery. John starts to bounce off the walls as soon as we get in the door. The hospital seems to have this affect on him, probably overstimulates his sensory system somehow. John is very irritable, antsy, and agitated. Hard for him to sit still. Other people in the waiting room stare. I apologize to the mother of a little girl that John crashed into (on purpose). After a 45-minute wait, the doctor sees John for 5 minutes and says John seems to be back to normal. (yeah, right!)
3:30 pm Stop at the grocery store on the way home. Big mistake. Too much stimulation for John, especially after the doctor visit. He touches everything he sees. John whines to get candy. John whines some more. I say "No, we can't get the 5-pound bag of sugar balls." John lays down in the aisle. I pick him up and put him in the cart. He tries to climb out of the cart. I catch him before he falls on his head. I hold his hand and he protests, loudly, "You're HURTING me!!!!" I'm not hurting him, but everyone in the store thinks I am. Many dirty looks. I shorten my shopping trip to get just the bare necessities.
5:00 pm Sesame Street is on. Whew. John sits and watches and laughs while I fix dinner.
6:00 pm Dinner is served. John takes one bite and chews it for ten minutes. His brother is finished eating already and asks to be excused so he doesn't have to watch John "eat like a pig." I bribe John with chocolate pudding for dessert if he can finish eating within an hour. He doesn't finish in time, and doesn't understand why he can't have his pudding.
6:30 pm I help John with his "homework" which is work that he didn't get done in a one hour time frame at school that day. With John on my lap and my hand on his hand for stability, he is able to complete the assignment in 10 minutes. I do the dishes while John runs around the house with his sister, pretending to play "doggie." John is the doggie and is barking loudly and realistically. His sister has a leash tied to his neck. "Oh no, honey, don't do that, it's dangerous." Doggie keeps barking.
7:00 pm Quiet time. Read a chapter from "Chronicles of Narnia" to the kids. John loses interest after 10 minutes and starts to tickle his sister, hoping to start some action. Sister whines to "Stop it!!!" John's brother wants to go to his room to get away from the siblings.
7:30 pm Help John to pick up his toys and put them away. Needs reminders of where things go, even though we put the same toys away in the same places every day.
8:00 pm Brush John's teeth for him. He gags and almost throws up. Sensitive gag reflex. Remind him to go to the bathroom before going to bed. Help him get his jammies on.
8:30 pm Phone rings. Teacher wants to talk about John's inappropriate behavior. He laid down on a little girl ont he playground at school that day. She suspects his behavior problems are due to problems at home, which are obvious to her, my being a single parent explains that. I tell her that she sees the inappropriate behavior at school but I don't see it at home, so how can that be caused by problems at home? She says she has talked with the social worker who agrees with her. I've never talked to this social worker, but he went ahead and reported this "case" to child protective services as suspected sexual abuse. I suggest that perhaps John needs different medication. Teachers says, no, we shouldn't "drug" a child, we should "modify his behavior." I say they should monitor him more closely on the playground so he is not as likely to engage in that sort of behavior. I am in tears when I get off the phone. John is throwing is stuffed animals around his room and laughing. I blow my nose and go help him pick up his stuffed animals.
9:00 pm John is still awake in his bed, playing, talking, singing, can't settle down. I go in to his bedroom, lay down next to him on top of the covers. I teach him a song to sing to his teddy bear to help his teddy bear go to sleep. John laughs hysterically, he thinks this is funny. I try a different song that is more relaxing. I try to get John to sing the relaxing song with me, he doesn't want to. I teach John to breath in deeply, but he can't. I try talking to John in a monotone soothing voice about how relaxed he feels. I put myself to sleep and miss my favorite TV show.
10:30 pm I wake up and go to my own bedroom. I'm too tired to do more than brush my teeth before colapsing into bed.