Rage free day, followed by a ragy middle of the night.

I was thrilled as we put Tim to bed last night.  He had made it through all the routines of the day- all the way to bed time.  He went to bed around 11:00, as did I.  At 12:25 the rumbling started.  I went in to see if he needed anything, bathroom, water, fan turned on, the usuals.  He motioned to me to get out. That's never good.  AT least he knows what he wants.  "I need to express this rage and you better not be in here while I'm doing it."  It's heartbreaking.  You know he's really frustrated, in pain, and can hear the thuds of him hitting his face.  10 times in a row.  I can hear that he's hitting bone, possibly jaw bone or forehead.  He went to slapping his face, but he's stopped that.  I'm glad he doesn't slap as that used to leave nasty bruises.  He opens the skin on his hands while handwringing, and then pounds the door, leaving a bloody mess.  The damage is minimal. I've read of broken windows and known children who kick holes in drywall.  We have had problems with neighbours, but not our next door ones, who must hear it. We live in an attached townhouse condo.  You feel the bangs on the door through the whole house, and even when I have earplugs and a pillow over my head, it is still VERY loud.  Today he has camp.  I let him sleep late, and will take him myself to where they are headed. I hope he has a good day.  Just yesterday his camp instructor said he loved riding Spongebob the horse and had a wonderful time, laughing and smiling the whole day.  Today they go swimming at a leisure centre, which he always loves as well.  Wish us luck.

Decision Day

I decided to go back to work although Tim is unsettled and doesn't have a firm start date, although the target is Sept. 14.  We've been told Tim has to be controlled and settled,  The thing is, he has to be controlled and settled.  The program he is going into is meant for him.  It has 6 young adults with autism, who function at similar levels.  It is run by people who already know him and are trained to deal with behavior. Since this is an adult program, it could run for years. If he doesn't get into this group run by the program we want, it could be a few years until another one begins.  I don't really know what we're going to do if this doesn't work out.
So meanwhile, this will be Tim's schedule:
8:30  wake up and hang with big sister or caregivers when available.
No day program, so we provide day program.
Daily outings- Zoo, walks, movies, malls, centre for Autism
Daily routines- Tim doesn't have many skills. At home he helps by folding and lugging laundry from our 2nd story to our basement and vice versa.  
When not available, Dad will stay home until caregiver comes at 3:00.
Then dad will go to work.
5:00 I will come home
5:30  Caregiver will go home.
Supper with mom and sometimes big sister
9:30  Bath time:  He loves baths.  Sometimes, when he is unsettled, a bath will help.
10:00 Bed time
So, any hours Dad and I aren't working, we are taking care of Tim.  24/7.  We're already exhausted.
Goody.  Can't wait.  

If I don't go back, I'd be on with Tim all day, but at least Dad would come home at a decent hour and in the evening we could veg out as a family.  But if I don't go back, I'll have to deal with a class I didn't start, which I've never done.  I have a great teaching team and that would help, but I would have to give up salary, potentially, and that is something we both don't want to do. 

Bloody Rages

Tim is a non-verbal, autistic, severely behavioural young man.  He is 5'11", and 240 lbs.  He is brother to an older sister, and son to me, (Karen) and Michael, my husband.  He is a complete puzzle to me right now, and I've known him my whole life.

Previously he has always manageable, Tim has been able to go out for supper (he loves to eat, especially sushi), long car trips (8-9 hours is not unusual), and on most outings we go on.  What he dislikes but can tolerate is grocery shopping, visiting with friends, and shaving. Tim has throughout his life, been prone to tantrums, which is understandable because he has no language, and we really don't know what he is thinking most of the time. We have had help for him since he was diagnosed at the age of 18 months.

From the age of 3-6, Tim attended a full day preschool for children with autism. At that point the tantrums were mostly task avoidance, and some surrounding denied request. At 6 he began in public school, but the behaviors escalated as untrained teachers and aids didn't really know what to do with him. He has always been able to read inexperience and walk all over it.

At 9 he began in a private school for children with autism, where he has been until the end of June. In September he will start an adult day program run by the same organization. This school specializes in teaching tasks by breaking them up into a series of small steps. This has been helpful to Tim, as it suits his learning style. Despite all this intervention, communication has been a huge struggle. He didn't get sign, PECs, proloquo or any of the other things we have tried over the years.  He just doesn't seem to understand language. He does gesture and guide us toward the physical things he wants, but other than that, his communication is very limited.

So that brings me to the point of my first post. Tantrums.  But now they are rages. With screaming, pounding on doors, bloody hands, and visits from police. He wrings his hands, opens the sores and spreads blood on the doors and walls as he pounds on them.  It's really loud and very scary.  If one tries to intervene, and no one who knows him well does, he will pull their hair, 

He has been having these more serious rages more frequently, as many as 5 per week. He is seeing a psychiatrist who specializes in adults with developmental disablities and their mental health. We are on a trial of a medication. The first medication made everything much worse, but with this one we are seeing improvements.

Today I cried after I picked him up from camp at 9:45.  They were supposed to go boating, which Tim loves. While he was asked to wait for the bathroom, he started a rage, where he was put in a room by himself, with staff watching through the window as he dumped cooking oil all over the place and himself. Within an hour at home, he was back to the sweet version of Tim. Wanting tickles, helping with carrying laundry and watching Disney movies.  But he should be in camp, on a boat.  And I should be at home, not supervising my 20 year old as he watches Leroy and Stitch, and enjoying the last few days of summer holiday I have left as a teacher.  I am not rested, and I am not ready to go back to school. To quote Linda Ronstadt, "Poor, poor, pitiful me."