Just wanting to survive

Okay, I'm embarrassed to admit that the main person melting down this week was me, not Jonathan. Although, he did have his share of mini-meltdowns which precipitated mine. The first week of school is hard because it is a major "transition." For those who don't have autistic children, "transitions" are the period of time between moving from one activity to another. In this case, the transition is moving from a summer schedule to a school schedule.

The experts in autism suggest the way to avoid this conflict is to keep the same schedule year round. Sounds good in theory; however, I'm not a morning person. So I enjoy getting up later during the summer months. And Jonathan doesn't sleep. He stopped napping early in life. He's the only one in the family who doesn't fall asleep while traveling in the car. While we make him be in his room with lights off by 9:00 p.m. We'll hear him moving around until after 11:00 p.m. If Jonathan every falls asleep in the middle of the day or goes up to his room to his bed, I make a call to the doctor. Sleeping is the first sign that he's sick.

Scott and I taught him early in life to read a book, listen to his MP3 player or quietly entertain himself if he wakes up in the middle of the night. Otherwise, Jonathan would be in our room every half hour to announce he was still awake. We are so fortunate that he will entertain himself quietly and he doesn't do anything harmful to himself or others. I've read and heard horror stories about parents of autistic children who have to sleep outside their child's room lest the child escape to tear up the house or do dangerous things.

We know he's up because we'll find open books, toys, lights on, etc. More recently I've found food and drink evidence all over his room. I found about a dozen bags of unopened fruit flavored snacks under his pillow. When I asked him about them, he said he gets hungry in the middle of the night. Since his psychiatrist expressed concern over weight loss the last visit, I'm not sure how to address this new behavior of hiding food in his room.

This week, I've been the one missing out on sleep. And it is all my own fault. I'm naturally a night owl. So when my husband travels I tend to stay up way too long. And yet, I still had to be up earlier than the last few months to get the kids on the bus.

So, my tolerance is lower due to self-imposed sleep depravation. Jonathan's tolerance is lower because his routine has been disrupted by his father on travel and school starting again. To add to his issues, he's on a bus with too many children making too much noise. He's in a school building with over 600 students and about 100 staff, with lots of noise, activity, and distracting smells. (When you start asking him what "bothers him at school" he has a long and interesting list. The custodians rolling the big trash can down the hallway, The air conditioner blowing. The smell of waffles and peas from the cafeteria. The indentation in his chair. The boy humming everyday they do "silent work" at their desk. The sound of the fire alarm, etc.)

He's melting down because he has to start homework. He's melting down because he has to be up, dressed, medicated, fed and out the door in order to catch the bus. He's melting down because he had to read 30 minutes but only got to play 20 minutes....

I'm melting down because my husband is not home and I'm filling out (in triplicate) Emergency forms and acknowledgment of reading all the school's policies on cell phones, bus etiquette, Internet, photo release, insurance, etc. I'm writing checks for lunches, parking permits, assignment books and practice shirts. But I'm mostly melting down because my children are all tired and cranky and fighting with each other and fighting with me.

Today someone asked Jonathan what his goal for the school year was. "To survive," he said.

That's mine too. That and acting more like the parent and less like the children.