Patrick’s First 15 minutes

The dates on this blog show that I have successful avoided getting started on this adventure for at least a week? Okay, okay, some of my kids were sick and the one of our dogs had a triple mastectomy. I might have been preoccupied. I might have been avoiding it. The idea of leaving Patrick alone still frightens me. As often happens when I’m on the edge, the opportunity to jump came up and bit me on the butt. So, I leapt.

Three kids in our house have music lessons on the same day. Patrick’s guitar teacher comes to our house. I transport his sisters to their lessons in shifts so that one will be here with him until the guitar teacher gets here. This week, the guitar teacher was going to be late. Usually when this happens I take Patrick with me on my last round of pick ups and drop offs, which are 6 miles and 14 minutes from our house. This time I pushed myself to leave him alone in the house for those 15 minutes. Pulld the trigger so to speak. The fear isn't going to go away, we're just going for it.

When I told him he was going to be alone, he was pretty excited. That old whiteboard came to the rescue once again. I erased everything on it, then listed some rules for staying home alone: no answering the door, except for Jacob, the guitar teacher; no answering the phone, if you need to call someone only call Mom (he sometimes calls inappropriate people for the situation so I wanted to make sure he wasn’t calling a family friend to tell them that he needed to get more toilet paper or something – just call me for anything you need). After the rules came a new modified schedule to focus on this 15 minutes. He was to play on the computer for 15 minutes, resetting the timer from it’s usual 30 minutes. After playing on the computer he was to sit in the living room and read until either I got back or Jacob got there. Then after his lesson and dinner, he could use his other 15 minutes of computer time. Playing computer games is a great way to keep him focused. Sometimes too focused, which is why I limited the time to 15 minutes. He is less than agreeable on every occasion that he has to stop the timer while he’s on the computer. We avoided that.

Into the computer room he went, with his timer. Out the front door I went with his sister. There’s always more traffic when you’re in a panic to get to something. All 5 traffic lights were red. We were gone 20 minutes. When we came in he was just coming back to the living room. The guitar teacher was waiting outside. He had knocked but Patrick probably didn’t hear from the computer room. Though my heart was racing a mile a minute, I survived. He seemed unscathed.

The next day after TRACE he told me that his teacher talked to him about being alone. Funny, I didn’t tell her. Is he saying that he told her he stayed alone? Many questions later, I deduced that coincidently they talked about the rules to follow when staying alone. Perfect timing.

We have a new item for our schedule on music lesson day, Stay home alone – play computer games 15 minutes. Maybe I’ll make up some Rules of Staying Home Alone and print them on the computer. Seeing things repeatedly helps him to remember things.

Newspaper Article Summary 1

His second goal to work on with Nichole is his writing. She thought his verbal language might improve if he wrote more with complete sentences. He’s going to start doing this a few times a week. His schedule Sunday included getting onto a news website on the Internet and reading an article. Then writing a summary of the article and sending it to Nichole. He read about Haiti after the earthquake. Here is his summary:

San Diego Union-Tribune

World News Haiti

This article talks about a lot of people were all buried or maybe dead. In my perspective that this is bad news to hear about people have been dead. The others needed food, meds and water. At least that they may have to get more food from the U.S. Army and Brazil forces. Then there was somebody named Luine cannot afford to pay for food. In fact I can say that military does well assisting the natives. I hope they don’t need to kill them. It is bad idea. And the doctors from Haiti also can have assistance from the military

That's it verbatim. I didn't read the article. He explained that "It my perspective that this is bad news to hear about people who have been dead" means he thinks the deaths in Haiti is sad. I asked him a few questions about the rest of it. I think he meant that the military and the doctors are helping. I hope the military isn't killing the natives either. It certainly would be bad news, whatever that means.

Writing on the Whiteboard

Nichole and Patrick went over the list of goals that he made up and put together two we would implement. The first goal is for Patrick to work towards making his own daily schedule. Eventually hopefully he’ll be able to plan his own day, from grooming and chores to free time. If he could do this, he could live somewhat independently, maybe in a supervised roommate situation. Being in charge of his schedule is a big task. He believes he’s up to the task, or in Patrick speak, “It’s a good thing I’m good at schedules”

The plan was that Patrick and I would write the schedule on the whiteboard every morning together. This would help him think about what he needs to do everyday, instead of just reading and doing them.

We are hoping that with repetition he can memorize most of the jobs. Some jobs must be done everyday, whether he wants to or not. Like relieving his bladder. This is the big one that worries me. My fear is that if he were not living here with me prompting him everyday, he wouldn’t pee other than when he showers. His brain doesn’t get neurofeedback from his bladder telling him it’s full and needs to be relieved. There are a lot of funny stories to go along with that, but that’s a whole other topic. His teacher tells me that he goes to the bathroom at TRACE, unprompted. He’s away from home for 7 hours and goes to the bathroom once. Is that good or bad? I don’t know, I just know I go a lot more than that. At least he goes. He has been trained over the last 6 years to go to the bathroom when he gets home from the bus. If it’s a normal day and he comes home on the bus, he’ll do it unprompted. If not, I have to tell him to go. He also goes as a part of his morning grooming duties, which is usually after he’s been awake for an hour. 0% of the time he did not. I have to ask him after he’s done with his morning duties to make sure he went. Lastly he sits on the toilet before he gets into the shower every night. I would like to find a way to make going to the bathroom at least 4 times a day, so routine he won’t leave without doing it. That is partly what I hope will come out of helping him write his own schedule

This change of schedule requires me to wake him up 10 minutes earlier. It takes him literally 5 minutes to pee and wash his hands. I’ll have to wake him up and tell him to get up and go the bathroom. He’ll bark and moan at me about not wanting to. I’ll remind him that in order to be an adult he needs to be able to take himself to the bathroom. I’ll point out that everyone else in our family goes to the bathroom first thing in the morning, listing their names. I’ll do this every morning, for I don’t know how long. I’ll have to wake up 10 minutes earlier as well. I like to get myself prepared for my day before I wake him . I’ll follow the same routine at night just before he goes to bed. Hopefully having him schedule his trips to the bathroom will make a difference in his resistance; after all it’s his idea right? We’ll see.

On Saturday and Sunday mornings, we erased the white board and he dictated the schedule to me. He knew all of the routine chores. I helped him with a few. Together we came up with some other stuff. It was raining Saturday so there were games to play and stories to write. Sunday was beautiful, so we included a bike ride and practicing shooting hoops. He said that he had himself a regular sports activity day.

The weekdays have been a little more difficult. For one thing, he can’t do two things at once., including thinking about his schedule and eating. Sin order for us to go over his schedule of the day I’ll wake him an additional 5 minutes to give us that time.. Today, he was moving so slowly; we just didn’t have time to wait. I write the schedule for him.

Mostly the items on his schedule are fairly routine. He’s autistic, routine is his mantra. Since it’s ,moving time slots on the schedule, I put going to the bathroom at the top. Then I allow him to think of what comes next. He can remember his morning duties, which are grooming. He can get to waiting for the bus, but I realized that we’d need to go into more detail on the items I usually put out there. Today he has a Karate class, which I label “Karate”. I then prompt him when he’s here to get dressed into his uniform. That will need to go on his list as well. He could come up with the chores that he does after school and of course, let’s not forget the reason for existence, Playing computer games, he didn’t forget that. I wrote in using the bathroom right before bed, because again, it’s a in a new time zone. If he’s going to live by these lists someday without my prompting, he’s going to need the detail to be there. Even the small things aren’t as simple as they seem.

I think I’ll start to have him write down the lists each day in his notebook. That way next week on Wednesday, he can pull out that list and take from it what he needs.

It doesn't seem possible that we could consider letting a person who doesn't go to the bathroom by himself go alone out in the world. I guess I won't have to worry about him getting lost at the bathroom or missing the bus because of using the bathroom!!!

The second goal is for Patrick to read and summarize newspaper articles and send them to Nichole. We'll get to that next time.

Patrick's List of Goals

That wonderful aide I mentioned in yesterday's post is still helping us. She asked Patrick to make a list of goal he would like to accomplish to become more independent. She's coming over to our house tonight to go over them with him and help him make a plan to accomplish them. Yesterday he wrote this:

Nichole's List of self motivation at home and downtown (maybe not)

1. I would like to pay restaurant bills.

2. I would also like to pay for movie tickets.

3. I would like to ride in city buses around downtown

4. I can find out how to get to Comicon

5. I need to find out how to get around museums for money.

Does this list be necessary?

Why not at home?

1. I need help to play hard games (e.g. Axis & Allies)

2. I would need to cook mexican food

3. Can I help myself to empty the trash on my own?

4. Do I have to load the washing machine and dryer?

5. Can you help me loading my clothes?

After he wrote Nichole's List... he read them out load to us. I reminded him that the goals were supposed to be new things, not things he already does. He can do and is already working on the top group. He immediately went to work on the Why not at home group.

We are a game family, Axis & Allies is played by his brother and Dad. He has played "on his Dad's team" with them. It's a very complicated war strategy game. Not one that he's likely to be playing without a team member. He likes mexican food, I guess he'd like to cook some. He empties the trash now. His Dad told him a few days ago that he could start doing it without being asked. He's started to fold some of his own clothes. But it looks like he'd like to learn how to do his laundry.

We'll see what list of goals they come to together.

LIVE AND DIE BY THE WHITEBOARD

Our house is centered around an object that hangs on the wall, in the kitchen by the dining table, clearly visible to all. It’s a simple whiteboard with black wood trim and magnetic erasers. Patrick’s daily schedule is written on this board in marker. Like most autistic people, the schedule is his lifeblood. It tells Patrick what is going to happen to him during his day. Where he’s going to go, who he’s going to see, what chores and duties he needs to do and when they will be done. He goes through the list completing each one before moving on. It brings stability to his day making life easier for him and in turn easier for us.

The whiteboard has been a vital part of our lives for many years. Here is abridged story of how we discovered the whiteboard. Patrick was 12 before he was diagnosed with Autism. Being an undergrad Psych major I immediately ran to the bookstore and bought a shelf of books about families with Autistic children and behavior modification techniques that worked with autistic people. I was moved by one book in particular, the Dragons of Autism by Olga Holland. Olga is a mother of a child with autism. She created schedules for her child that helped his comfort level and functioning. Her successes motivated me to start a schedule with Patrick. I decided on a big whiteboard that he could not miss Everyday I wrote on the board in detail what he was going to do.

Shortly after his diagnosis, we hired a brilliant, loving aidewho was a student at a local college. She and I created a small behavior modification program for him to get rid of some inappropriate behaviors. We listed the appropriate behavior on his schedule. We kept a tally of his reward time on the whiteboard so that he could see plainly what time he was loosing and why. In the beginning, he was very motivated to watch pre recorded cooking shows, now he likes playing computer games. He learned to work hard to keep all of his computer time. It has been a great tool for modifying behaviors. Now that he’s 19, we don’t often need to work on his behaviors. Though recently he was making inappropriate shrieking noises instead of laughing. We wrote on the board that he would lose 5 minutes of computer time per shriek. He did lose computer time. After aboutwo weeks, he quit the shrieking. I’ll use this same approach to reward independent behaviors. I'll let him know exactly what he needs to do to be left at home alone. If he doesn't do them, he'll lose some part of his computer privileges. The board and shedule will be a great asset to us in the transition. The hard part is deciding which baby steps will get him there. That will come next!