Sometimes it comes out of nowhere

On Thursdays Patrick goes to basketball practice with the Sports for Exceptional Athletes group in San Diego. Practice starts before his bus gets home from TRACE so I pick him up and drive him to the rec center. It’s not terribly convenient, but he loves to play basketball. His skills have improved a lot in the few seasons he's been playing with them. Patrick really likes the coach. It’s a good thing.

This past Thursday I picked him up and we stopped at the bread store, as usual. The whole time he’s speaking in partial sentences. He has his usual exchange with the bread store employee, in partial sentences. On the drive he tells me about his day at work. He uses partial sentences until I prompt him to get to what he is trying to convey. As I walk into the rec center I’m wondering why we force full sentences on him He omits pronouns and drawls one or two word sentences (-1 in the sentence game). What does it really matter? The important word is usually there. He can get them out. He’s polite. Why do we force him to use complete sentences? He seems to get a long during the day without using them. Are we just looking for him to speak clearly so that he sounds smart? So everyone knows that he is smart and in turn that we are smart? Nonsense. Besides correcting him all the time is a huge amount of work. It is non stop and requires huge amounts of patience. Maybe we should give up and let him speak his own way.

Then 10 minutes later, he’s running in basketball practice – bursts of speed he calls it, trailing his arms behind himself. This is how he runs. Then during the last lap, out of no where, he pulls his arms in front of himself.. He doesn’t pump them, but they are purposefully in front of his body, his hands at his chest. I'm stunned. It must have just clicked for him. We haven’t been working on his gait for months and that attempt seemed futile. A natural swing isn’t intuitive to him. He tried but it was too difficult for him to think about two things at once, arms and legs. I couldn’t find a way to show him how to move more efficiently. I gave up, thinking I’d try again later. But there it was in the last lap, out of nowhere.

Maybe his sentences will come about the same way? We really are trying to get him to speak clearly and communicate his needs so that he can get himself a good job. If he can talk to people, maybe he can work doing something other than straightening items in the store with an aide/interpreter. He does want to be able to work by himself ultimately. He needs to communicate to work with other people. He wants to work with other people. It's not for our benefit. It is for his future. We’ll hope that eventually something will click, just like his gait and he will pick up better sentence structure.

The Sentence Game

Nichole came over two weekends ago to hang with us and work with Patrick. It’s always a good day in the Melville house when Nichole is there. Everyone is happy, knowing she will pay some attention to each person and dog. She’s like Mary Poppins, something fun always happens when Nichole is around.

Nichole had two plans for the day. The first objective was to test Patrick’s sensitivity and response to having a full bladder. She had him drink a cup of water every hour or so. Periodically during the day she also had him stand up and put his hands onto his stomach to see if it was distended. She asked him if it hurt just a little bit (hurt is a subjective word, but he used it). When he said yes, she told him that is what it feels like when he needs to relieve his bladder. When it “hurt” he went into the bathroom and peed. That continued all day. He never went to go to the bathroom unprompted. He was prompted more than on his average day. Possibly if made him drink a lot another day and didn’t prompt him he would take himself to the bathroom. We’ll save that for another day.

The other objective on the agenda was to work on Patrick’s sentence structure. When she arrived she told Patrick the family was going to do one of his favorite things all day, play a new game called the Sentence Game. She explained to him that during the course of the day he would earn a point for every full sentence he said. But he would have one point taken away for every partial or incorrect sentence he said. The whole family would be listening and keeping score. If at the end of the day, which we determined to be 4pm, he had at least 40 points, Nichole would take Patrick somewhere to get him a treat that he wanted. They talked about it and he decided the reward he wanted was a book. Nichole carried around a notebook and kept the tally. Everyone kept an ear out for sentences, pointing them out as the day went on. He never asked if he was supposed to correct other people’s sentences, or if anyone else was getting points. He accepted the rules as they were and was happy to play.

As you may have figured, he did reach 40 points, barely. I don’t recall the exact number of correct and incorrect sentences, but his sentences during this day were spoken correctly about 60% of the time. That’ is a lot of room for miscommunication. By midday, as he was getting used to the game, we noticed that sometimes he would self correct. He would start a sentence badly, stop himself, think for a minute and then say the sentence correctly. Wow. I didn’t think he could generate clear ideas without prompting. It is possible. Thinking about what he wants to tell someone specifically is an attempt to communicate. Often when he’s talking, he’s really just talking to no one in particular. He’s just thinking about things out loud and doesn’t often care if anyone is listening. It’s not an attempt at communication.

Communication is difficult for him. For the most part he gets lazy and throws out a word or two. When they are accepted that way they are reinforced. I’m am always stopping his every sentence asking for clarification. I speak his language, so I understand the lazy one or two word sentences, but no one else does. I try to tell him other people won’t understand what he’s saying. “I don’t understand that.” “What are you trying to say?“ “What does that mean?” It’s a long, slow process. Not a wonder we’re both tired at the end of the day.

If I could figure out what motivated him to correct his sentences I might be able to replicate it. Why did he start to correct his sentences before anyone told him it was incomplete? Maybe it was the challenge of the game, the love of the rules, easily quantifiable rules, where he wins. I should try it again over the weekend. He could earn half of his computer time for accumulating a certain number of points. I read a book Exiting Nirvana by Clara Claiborne Clark about a mother and her adult autistic daughter. For one of her daughter’s birthdays she wanted a golf swing counter, she’s a number geek of course. Her daughter loved to count things, so she taught her to count her own good deeds each day. She could be rewarded with a Popsicle or whatever treat she wanted at the end of the day. She would keep of tally of nice things she said to people and subract when she was rude or selfish. Mostly it was the love of counting things that motivated her to earn enough points to get her ice cream. Maybe he too would just love accumulating points. Wouldn’t that be so cool if I could teach Patrick to count his own sentence errors? He could then go around self correcting. Wow!! Now I’m getting way ahead of myself!!!! I’ll try the game again to see if he’s still motivated. We shall see.

No Time For Basketball by Patrick

Once upon a time, I shot 18 baskets. Suddenly a time machine went down the hoop. It shocked me and my basketball to the time of the Titanic sank. I was cold. I dribbled the basketball on the ice. I'm standing on an iceberg. I screamed when the ship smashed the ice. The time machine shocked us to the future on the moon. I was in an astronaut suit. The basketball was floating away everytime I dribbled it. The machine then shocked us again to the Gladiator Stadium in Rome. The chariot racers are charging at me. I dribbled the basketball before a lion came outside. It roared at me. The machine then shocked us to the time of Cowboys. It was really hot out. I cracked the skull of a dead cow with my ball. The machine shocked us to the time of World War II.

(New Page) Aldolf Hitler commanded his troops to kill me because I was a Christian. I shot an invisible basketball and hit one of Hitler's soldiers' head. And the machine then shocked us to the universe 15 billion years ago. I dribbled the basketball in the starry sky. The universe expanded at us. We accidently went to heaven. I found the Holy Basketball Hoop. I shot my basketball into the Holy Hoop. God then threw it back to me. I'm back home playing basketball at midnight. I went to bed. I didn't had dinner. The End

He wrote this in a story book we started a couple of years ago.

Clear as Mud

Yesterday morning, I put Patrick’s schedule up on the whiteboard. We’ve been filling out his schedule together mostly, but I didn’t have enough time this morning, I will get better at waking him up earlier. He put on his Seaworld uniform and came out for breakfast. The first thing out of his mouth was “Why do I have to stay alone?” What a nice complete sentence. He even says it with indignation. He leads you to believe he does not want to do this. But that’s not the case. This is exactly what he wants to do. His sentence has foiled him. He must have heard this sentence somewhere else. I wonder if he has information stored in his brain by word or subject and when he wants to say something, he pulls a sentence out of that file, repeating it verbatim. He retrieved this sentence from his staying home alone file and repeated it, even though it means the negative of what he wants to communicate. When he says it, he has no idea it’s not the appropriate thing to say. It came from the right file. ‘Staying alone’ are in the sentence. I have to probe him to get to what he wants. “You don’t want to stay alone?” I ask. “Yes, yes, I do want to stay here alone.” I explain that he his sentence means that he doesn’t want to stay alone. He reiterates his desire to stay. This miscommunication happens everyday in one way or another. How is he going to communicate to the bus driver where he will need to get off?. What if the bus breaks down and he needs to communicate with the bus driver or his employer? What if it’s raining and someone at the bus stop tries to get him to go to the bathroom with him or her and he gives him or her a prepackaged sentence that means the opposite? It’s frightening.

This same afternoon, Patrick called me from the school bus, on his way home. He told me he was in a bad mood. Bad mood, what is a bad mood? He has no idea. I ask why. He says something about a piece of paper from Charlotte and a blue hat that he’s still wearing. Hmmm. “Did you forget your work hat today?” “Yes”, he replies. Hmm. “Did you get in trouble for not wearing your hat?” I’m thinking maybe he was written up for being out of uniform, thus the paper and hat. “Not really,” he says. “Charlotte gave me a blue hat that I was supposed to give back”. I see, so he borrowed a hat from Charlotte. It was a sunny day. That makes sense. Though I’m not at all sure about any of it. I tell him I’ll see him when he gets home. His sister and I speculate what he was talking about. Neither of us is sure or correct. When the bus arrives I hear the bus driver tell him, “Is it okay for you to be in a silly mood tomorrow on the bus?” “Not really, no, I don’t think so” he mumbles. The bus driver says he’s been silly the whole ride home. That’s a bad mood? He walks off the bus wearing a blue SeaWorld hat. He says it is Charlotte’s. I make sure he puts it in his bag so that he’ll return it to her tomorrow. There is no paper. I’ll never know what he was talking about. And I’m schooled in his language. How will he get himself around without being able to communicate? By luck? Lucky that there’s never a glitch in his routine? Or by the magic cell phone where he calls me when something happens and I come to help him? This gives me hope.

Article Review #2

His assignment was to read an article online and summarize it using full sentences. He's writing 3 a week and emailing them to Nichole.

January 27. 2010 Los Angelos TImes National News

Toyota Temporarily halts sales of eighth models

To my opinion is that I don't know if Mimi & Poppop would return their car to Poway. This is not exactly good for Poppop to drive it to church and MCRD. I could just tell them to take it back to the dealership for another car. They may not even want to try to keep this car. This would also apply to Mrs. Rose too. The Matrix was a good car that turn out weird. Maybe a good idea.

I didn't see this "review" until today. I'm pretty sure that neither my parents, Mimi and Poppop, nor Mrs. Rose, his high school teacher, were written about in the LA Times. Patrick's selection of articles is not a surprise. He has a small obsession with cars. We have encouraged this hoping that it was a topic other people might be interested in as well, as opposed to let's say Lilo and Stitch or even Extreme Animals. The rest of his review is basically about his experiences, which is par for the autistic course. My whole family drives toyotas. We have 3, my parents have three. Theirs is the newest of the bunch. He was with my parents once when they took their car to Toyota of Poway for a part, hence the reference. He goes with my parents most weekends to church and we often meet them at MCRD in their toyota, hence the reference. I believe Mrs. Rose owned a Matrix. How it turned out weird, I have no idea.

This is typical of Patrick's writing. Everything is in reference to himself. Even his birthday cards to other people are about what he did, or what he's thinking about. We're trying to work on this. I wonder what Nichole told him about this "article review".

Try, Try Again.

Is it easier the second time? Maybe, but not much. Leaving your special needs “child” (he’s 19) at home alone doesn’t seem natural. I don’t want to leave him. We won’t know if he can be responsible for himself until we try. It’s like a band aid that been on your skin a long time, you just have to pull it off quickly, endure the short lived pain. We have to go for it.

How could I change the routine without warning him several times a day e, for several days like I always do? Quickly changing the schedule works when the change is something he really want , to be alone, and in this case something he also really doesn’t want, to take his sisters to school. I spontaneously (that’s a word I don’t use often in a sentence with Patrick) decided this morning to leave Patrick at home alone for half hour while I drove his sisters to school. Most mornings, I get up about an hour before everyone to get ready for my day wake up my daughters and they get ready for school. I prepare Patrick’s morning juice (fortified with a b complex cocktail), his bagels and his lunch. I wake him up with just enough time for him to get dressed and eat/drink his breakfast before it’s time to take his sister’s to school. Their school is 15 minutes away. He goes with me, unless for some reason his father is home, most mornings he’s surfing. When we return he brushes his teeth and his retainers and shaves. With whatever time remains before the bus is scheduled to arrive, we take the dogs out for a walk. He rides his 3-wheeled tricycle. We get home with five minutes to spare. Long enough for him to put his wallet and cell phone in his pocket and get outside for the bus. He doesn’t much care for taking his sisters to school, but he does it.

When we started to make his daily schedule on the whiteboard this morning, I suggested he stay home by himself while I take his sisters to school. He said “ok”, which is about as excited as a kid with autism gets. We listed his morning duties of shaving , brushing his teeth and retainers, which takes him 15 minutes. After his morning duties, he was to empty the dishwasher, that usually takes him about 10 or 15 minutes. After that I added making his bed, which takes about 10 minutes because he gets on the bed while he’s making it and it ends up taking a long time. I knew it would take him more than half hour to do all of those things. So we were set.

I didn’t print a sign of Staying at Home Alone Rules this weekend, so we listed them together on the board. When I initially asked what the rules were for staying home alone, he drew a complete blank. We went through it again, do not answer the door, do not answer the house phone, you can answer your phone, (that way if something happens and I need to call him he will answer), only call Mom if you need anything. Again, he likes to call people. I am thankful that he can use the phone. But he doesn’t have the ability to judge who can help him in any given situation. Many times he calls the wrong people for the wrong thing. Obviously everyone on his phone list knows him and wouldn’t be stunned at receiving a call. But, he doesn’t need to call his grandparents at 7:30 am to tell them he can’t find the toothpaste, which is possible.

He knew the stakes were big. I told him if he stuck to the chores on the board and this went well, we would do it again. If he got onto the computer or did anything else, we would not. Out the door I went. This time the traffic was not so bad. I was home in half an hour. He was still emptying the dishwasher. Sometimes it’s bonus that he’s so incredibly slow. He didn’t have any idle time to get curious. It worked so well, I think we’ll do it again tomorrow.

I feel pretty safe leaving him when he’s busy. If he had nothing to do, I don’t think I would leave him alone. There will come a time when something out of his routine will happen and he have to make a decision or indecision about something. It’s not something his brain does. He’s unable to rationalize. The only response to situations is what has been programmed over and over in his brain. Sometime he’ll be faced with situation for which there is no preprogramming. I don’t know what he’ll do. Maybe I should simulate more and more unexpected things as he gets more comfortable being alone. Have some neighbors come over or something. There’s so much to do.