Adventures in Independence

The Evolution of Friendships

2010-05-11T14:10:00.000-07:00

Patrick has more friends and a busier social schedule than any of the rest of our family of six. As far as I know, none of the rest of us is autistic, though sometimes I wonder. A few years ago, you couldn’t have convinced me that I would have the honor of watching this change. At 17, I gave up hope that he would have a friend let alone be a friend. At 20, he’s a party animal, often seeking people out to do things with him. Is it maturity, hard work finally paying off or just the influence of some really good people? As Patrick would say, yes.

Everyone matures to some degree at their own pace. Maybe they learn to go down stairs or recognize a red stop light or any small thing they learn to do. Everyone does it. Other than two socks coming out of the laundry a single, change is the only constant in life. Growing up connected with adults. He read a lot of science books. When I say he read a lot of science books, that is an understatement. He consumed a lot of science books, obsessively Adults found it fascinating to hear him recite information about the gestation period of certain creatures. What a smart kid he is to be able to remember all of that. Patrick loved to hear and feel himself talk about things he was obsessed about. Other kids are not so interested in hearing these diatribes, usually directed at no one in particular. In time his obsession changed from scientific facts to legos, and Star Wars and sports. Things boys his age know and love. He also has a job that gives him a lot to share with his peers. Slowly, he is maturing. Heck, he can stay home by himself for half an hour, that is pretty mature. Maybe making friends is a part of that maturity. LIke when your babies learn to play with each other, rather than alone next to each other. It could be a part of the evolution, just in his own time frame.

Learning social skills has been a long, difficult process for Patrick. Many people aided in his journey. In high school he was still disinterested in his peers. I am a believer in in facilitating behaviors with rewards. For the autistic, relationships and interactions with others are behaviors. They don’t intuitively know how to how to relate. They can’t watch other’s behavior and follow the signs. They need to be taught to read social cues and their corresponding responses. We had an aide who was a wonderful loving person that made he was communicating in complete coherent responses all afternoon. Every grocery store clerk was an opportunity to interact with others. He got involved in special needs sports. We started with bowling and gradually added tennis and basketball. He has a couple good friends he made there who are also autistic. They interacted via prompts from the Mom’s, “Ask Clint how his day was.” “I’m doing fine” “Good job bowling, Patrick.” Nothing genuine or spontaneous, only the rote, memorized prompted and rewarded sentences. They were learning social skills. I believed that is how it would always be for him.

When he was 16 he went to Autism camp and met his first friend. The camp counselors brought him together with a boy just about his age For the first time in his life, enjoyed the company of a kid his age. They had sword fights. They talked about drawing. They didn’t seek each other out in a field and sit together giggling and carrying on the way other kids might, but they liked being with each other. And this was an accomplishment Later that summer, they went to surf camp together, which they did for several years. This boy didn’t live near our house, so it was difficult to pursue this relationship. We carted his friend back and forth to camp one year so the boys could interact with each other undisturbed. They exchanged emails. At first I helped Patrick with his email communication but after awhile let him go. Sometimes the emails didn’t make sense as they both are used to the mindset that everyone knows what they know, but they got the swing of it. Patrick used to tell me sometimes that Steven had emailed him that they were going to do something together over the weekend. I tried to explain to him that Steven couldn’t just show up at our house, he didn’t even know where we lived. Certainly Steven would call him first. Many such occasions came and went. Lo and behold, one day I came home from a run, and Patrick was gone. My husband said Steven had called and came over with his Dad to get him to a pirate ship. I never would have believed he would have a play date. Not even that one time. When they got home Steven told me that I needed to go shopping to buy Patrick a proper pirate suit, he was ill dressed!!

From his buddy Steven, we learned about a local group called Teen Jam. A family in this area got their teenagers and friends to interact with a group of teenagers with autism. The group grew into a club. Once a month they meet around town to do various activities, after which they practiced social skills. They would ask and answer questions about each other. At christmas time they have a dance. He’s learned a lot of group social skills. He also got in the Best Buddy program. They connect neurotypical peers with our guys. He’s had two really nice guys who have come to pick him up at our house and take him places like Seaworld or the movies. They exchange emails The group gets together for a party a couple times a year. Patrick plans guy dates with his buddy. He enjoys going out with these guys.

He started to open up even more when he connected with the people at TRACE. He was just 18. These are the most wonderful group of people. The teachers and aides are loving and wonderful. They are a community based operation and they take the kids into the community to interact with people. He starting working at Seaworld with a guy and they became friends. In the spring, Patrick joined his friend’s baseball team. They sat on the bench together, 19 and 20 years old, his friend introduced Patrick to the other guys on the team. Patrick puts his hand out and they shake hands, “This is Patrick, this is Ryan” “Hi Ryan”. Tears came to my eyes. These boys get together to play and to practice and they cheer for each other. They are hanging out like baseball players do. They high five each other. They each believe themselves to be professional baseball players. There is no competition, they’re all just good. There Patrick is, a part of the team. He loves to be a part of that team. It’s beautiful. These are very special friends, in an encouraging environment.

There’s another buddy in this group. He lives up the street from us. He also has Down’s syndrome. I brought Patrick up to his friend’s house when he was 13ish. The boy tried to give Patrick a credit card. Patrick laid down on the floor of their house and wouldn’t move. It didn’t go so well. His parents are not of the prompted friendship school. Maybe it’s because he’s not autistic and made friends easily. That was it. Five years later, they’re riding the bus together. His friend Nate came to his 19th birthday party, Star Wars themed. Then over the summer both of our families were in hawaii. We connected. Patrick convinced Nate to spend more time in the water. Nate taught Patrick how to be a little affectionate. They clicked. Nate joined the baseball team. They went to camp together. They play video games together. They hang out together. They even talk on the phone together. No joke. Not usually from Patrick’s prompt, but Nate will call here, just to talk to Patrick about something he’s obsessing about.

The biggest shock for me happened about a month ago, Patrick called me from the bus and asked if he could go over to Nate’s house after school to play video games. You will not believe the conversation I had with him. “Hmm, Patrick. Did Nate talk to his Mom about this? Did his Mom say that it was okay for you to come over?” “I don’t know,” he says. “Well, Nate has to make sure it’s okay with his Mom first. Hang up the phone right now and have Nate call his Mom”. We were discussing social etiquette, based on a request from him. I was amazed. I immediately sent an email to his friends Mom to let her know what was going on. She did not know what they were concocting together. They were in this together. Unbelievable. That is a very special friendship.

Patrick is a completely different person from three years ago, night and day. I often wonder to myself, if we had taken him out of the dysfunctional high school and put him early in with a group of people like he’s in now, would he have blossomed earlier? If I gotten him started in sports earlier, teen jam and other social classes, would that have made the difference? Or is it just good ol’ Father Time? Maturing Patrick on his own schedule. Despite all of our hard work and efforts. We’ll never know. Whatever it was, I’m thankful for it.

Resume

2010-03-23T13:08:00.000-07:00

Patrick has been going to some interviewing workshops the school district have been giving. They occur during the weekday while he is has TRACE. I believe his whole group goes to them. As far as I have figured out, Seaworld sends a representative out to practice interviewing with special needs kids. Patrick has met the interviewers. He may have been mock interviewed by them. The real interview should occur at Seaworld itself. He’s been learning some great interview skills. They’ve gone over things that inappropriate to say during an interview. How to dress for an interview, farmer clothes if you’re interviewing for a job as a farmer. He enjoys the events and it’s great practice.

Last week Patrick came home with an envelope, inside of which was a resume, instead of the usual notes from teacher to family. I opened the envelope to find this nicely printed resume. It was prepared for the next interview workshop. It is quite interesting. Here it is:

Home Address (619)960-9406

Patrick Melville

Objective To find employment that will best fit my skills and abilities

Experience 2009 – present Seaworld San Diego, CA

Maintenance

Park Prep.

Stock products

2009-present Discover PB San Diego

Office Work

Collate

Fold

Label

2009-present Bishops Storehouse San Diego

Warehouse Clerk

Stocking product

Heavy lifting

Recycling

Education 2004-2008 San Diego High School San Diego

General Studies

Certificate of Attendance

Interests Team sports (baseball and basketball) karate, computer games (Lego’s Star Wars) and being with family.

References Charlotte Davis her phone no. Trace Teacher

It looks really nice. I looked the top. “Whose phone number is that? Is that the TRACE office?” “Nope. It looks like my cell phone number.” He replied. “It’s not your cell phone number at all. “ I said. He never suggested he’d change it. He just said “Oh”.

Continuing down I got to his experience and I notice he’s listed that he was currently doing the job that he did in high school during his CBI (community based interaction). He hasn’t gone there since he finished high school. He understood that he did the work when he was in high school. He understood that he was no longer in high school and no longer working at the church. He didn’t quite grasp the meaning of the word present. That it means something you are doing this week and next week. The concept of the dates confused him altogether. In truth he’s been working at Seaworld since late 2008 and he’s been working at Discover PB since he started with TRACE in 2008. Fortunately for him, when he interviews for a job, he will be able to tell them what he did with excellent recollection. The dates won’t really matter.

Time is very nebulous concept. He understands that he was different ages during different years and with assistance and a paper and pen or calculator he can do the math. But, if you ask him how old he is now and how old he was in 2005, it’s too hard to figure out the 15. His age at certain events in time are important to him, but the years on the calendar are not.

The best part of the resume, of course, is his list of interests, mainly his Lego Star Wars. He listed being with his family. I assume he was prompted on that one. It loves to be with his family, I just can’t imagine him thinking of that as his interest, in the same light as Lego Star Wars!

Not Always What they seem

2010-03-16T13:36:00.000-07:00

My heart is pattering a mile a minute. I got an email from Patrick’s teacher saying she’d like to cram 3 bus riding sessions next week and then give him the riding alone with a ghost rider test. A week. Not a year, a week. After that he would ride the public bus to TRACE and home everyday. All of my instincts say no way. The thought of it makes my blood pressure rise. Does that mean he’s not ready and I know best? Is it just a natural Mom protectionist feeling? His teacher thinks he’s capable and I have the utmost respect for her opinion. We’ve gone this far on that basis only.

I really don’t want to write about this. I want to write about the beautiful colors outside on this spring day. How I drove home from my yoga class and admired the yellow and orange daisies in my neighbor’s front yard. But my heart is heavy with worry over this stupid bus stuff. I feel like someone put a bus on my chest and let go.

Is this much distress a natural by product of our children's growth? Should I go with the program and have faith that he will be able to make it on his own? Do I suck it up? I think he would like for me to. I think he wants to feel like he’s a real adult. It's impossible to figure out what he's thinking. Though now that I think about it, I wonder if much of his desire to ride the bus alone and work alone is a result of the continual “spinning” I’ve been giving him for many months about it. I have made it a big deal to everyone we know, grandparents, neighbors, everyone. I wonder if I switched my enthusiasm for him to say baseball, running or taking a college class, he might join the bandwagon and change his focus. It’s hard to say how much of his investment is heartfelt and how much is a result of the spin we play on his goals.

After getting this email from his teacher, obviously I’m stewing again. My heart just tells me that he’s not ready to go alone by himself everyday. Jeez. Everyday by himself an hour and a half or so each way to TRACE? I don’t see it. I ask Keith and he says that he doesn’t see it right now either. Devin confirms that he doesn’t believe it’s time for him either. That is a consensus by the three adults living in our house that are with Patrick everyday and have been all of his life.

Patrick has a baseball game today. His two buddies, one of whom is in his TRACE , the other was in the group until last year and their mothers are at the game. His teacher is going to come. I talk to the Moms who tell me to follow my heart and just say no. They also don’t see him right now riding the bus himself.

His teacher comes and I speak with her about my feelings. I feel torn up. The whole thing is resolved so quickly. She tells me not to worry, we can put the training off for 6 months and revisit it then. Just like that. There is time. We don’t need to rush into anything. A thousand pound block just rolled off my back.

What am I going to tell him? It’s my fault you can’t go through bus training now? It’s not forever, just a break. Keith doesn’t think he’ll care too much about it. I’m afraid he’ll break down and cry or get angry with me. The next day when he’s emptying the dishwasher, I tell him that I spoke with his teacher at the game. Because regular job at SeaWorld has not yet come through, he is going to take a break from the bus training. He was training to ride the bus to SeaWorld, right? Of course. Well, until the job comes through there, we don’t need to train. Spin, spin, and spin. He seemed to be okay with that. He said, "Then what will I do on Tuesdays?" We asuume he’d go back to going to the library with everyone else in the group on Tuesdays. He says his teacher has told him that the PB library is closed over the month of March. Must be a California budget solution. And so he delves, back into the unknown. Another day in the Adventures in Independence.

Cubs Baseball Game

2010-03-09T14:14:00.000-08:00

I asked Patrick to write about his first baseball game of the 2010 season. Here is what he wrote.

Cubs Baseball Game

I did quite good at battling at home base and I missed a little bit. And also running around the bases everytime when everybody was shooting balls. Meanwhile I was catching balls when I threw it back to Sean. I also did see Katie passing me the ball. Nate did quite fine at bat. He did a good job at hitting balls. This was a fun game for all of us. (including Luke) Maybe we could play another game here. This is good. I may have to practice swinging the bat and catching balls with the team. PLAY BALL.

Each of these characters are on his team. This is his friend Nate’s first year on the team. Nate is in his TRACE group and our neighbor. He is a good hitter and runner. During the game they had their first real play when Sean threw the ball to Patrick, though he didn’t catch it, he went and got it (an achievement) and he threw it on the Katie, who also didn’t catch it, but went to get it, and threw it to the pitcher, who also didn’t catch it. It was a good play, though no one gets out in Sports for Exceptional Athlete’s baseball. They are learning to pass. And that is how the game is played.

TWO STEPS BACK

2010-03-09T14:01:00.000-08:00

It must be obvious from the tone of my writing that I’m a bit apprehensive about this whole adventure. My initial thought was that it was too much for him. I also thought tennis was too hard, but it’s not. It did take him 3 years of Sports for Exceptional Athletes tennis seasons to finally get to where he could return a ball at all. I didn’t think he could coordinate the ball and his eyes at all. He worked on it and slowly but surely every year he’s gotten a little more able to focus on the ball. In the same manner, I think he needs more time before he goes out to ride the bus by himself. Maybe he’ll mature a little bit in a year. The routine will be there.

His behavior has not improved. He is constantly moaning and groaning about his regular chores around the house. He’s refusing to go places or do his routine chores. Everyday I threaten to take away his computer privileges. His speech is more fractured than normal. He’s jabbering a lot about nothing and asking repeated questions, which is one of his forms of self stimulation. I questioned if it was just menopausal me getting irritated all the time, but everyone else in the family has commented to him about his negative behavior. It’s bugging us all.

I am convinced it is a manifestation of the stress he’s encountering with the bus training. I’m not sure if there is any one thing that is stressful. Crossing the streets? Waiting for the bus? Not having the aide show up for a training session? Not going out for training on the same days each week is killing his routine. Maybe it’s the fact that he has to pay attention the whole time he’s in training, which is particularly difficult for the autistic mind that tunes everything out. Whatever it is, I think right now it’ more responsibility than he can handle.

He’s nearly mastered the steps that the TRACE program requires for him to ride the bus himself. He knows what he must do and is good at following orders. I have no doubt that he will pass the test of riding by himself as he knows that someone is on the bus watching him, even though he doesn’t know them. He enjoys tests. The training and test he can handle. It’s after the training I’m worried about. When he is comfortable riding the bus. Maybe he thinks he ‘s just going to slip into the minimart to buy him a drink, and he misses the bus, or now he’s crossing a busy street because he sees everyone else doing it. HE thinks he ought to be able to do what everyone else can. Hell, he thinks he should drive.

The last time Patrick behaved this way, he was in high school and things were out of control in his classroom. There were a lot of kids in his classroom, none of them spoke English as a first language so there was a constant noise in a language he didn’t understand, and his teacher couldn’t keep an eye on him. One day he was supposed to go out into the community to work and buy his lunch at McDonalds. The community aide didn’t show up. When lunchtime came he went out of classroom alone, left a closed campus without the security guards seeing him, walked across major downtown San Diego street and ate at McDonalds. Somehow he snuck back onto to campus. The other kids in his class saw him with McDonald’s food. I feel we are going to see a repeat of this. When he snuck out of school, his response was, but I made it across the street. Next he’ll be crossing a different major street the wrong way because he sees ice cream that everyone has so he’s going to get it.

This morning I found that he’s been reading in the mornings and not getting ready for TRACE. When I get home from taking his sisters to school, I’ve been noticing that he’s still way behind in grooming chores. I know he moves in slow motion, but it seems extreme to me. Today, I noticed a Spanish dictionary in the bathroom. No one else in our family reads the Spanish dictionary. It might have been understandable if he needed to use the toilet, but he does that at night. He’s just reading. Distracted by what catches his eye. Instead of doing what he needs to do. I don’t know how long he’s been doing this. A couple of weeks I would guess. I try to explain to him that this is irresponsible. He doesn’t understand the concept. This is a conversation you might have with a 6^th grader who didn’t come home right away after school. Once he gets comfortable riding the bus will he just start reading or writing and miss the bus altogether? I wish those years ago in high school when he was acting out, I had pulled him from the school. I don’t know how I could really do that in his senior year. Maybe I should have gotten him a private aide. I should have intervened. This feels just like that. And it’s not right.

The same day I wrote this, I spoke with Patrick’s teacher and expressed my concerns. She noticed a slight increase in negativity in him lately, but not much. His teacher assured me that he won’t begin going out alone on the bus for another year. I thought he was starting to go alone next semester. We agreed that if his behavior didn’t improve between now and after Spring Break, we would reevaluate the independence plan. I felt a lot better.

Detective Mom

2010-03-03T12:31:00.000-08:00

It has been more than a week since I last posted my writing. It’s not that I haven’t been writing. I just haven’t been able to resolve my questions. My writing has been delving into the possible reasons why Patrick has been obstinate and difficult. He is normally a pretty agreeable happy guy. Trying to find causes in an autistic mind is like piecing together a beautiful puzzle while blindfolded. Not only is it difficult to get the right pieces to fit together, you have to find the side with the picture on it and lay it down facing up. You have to be a detective and gather the right clues, without any hints. I started to read Jodi Pacolet’s new novel yesterday, House Rules. The main character has asperger’s syndrome. The first chapter, written from his Mom, tells the story of how her son who is obsessed with detective shows and crime scene investigations sets up a pretend crime scene for his Mom. He is the dead body. He lays clues around the house and his Mom walks around asking questions and making deductions from the clues. When she makes a repetitive guess he says “Do you really believe I would execute the same crime scene twice?” That is how it is with Patrick. As much as I read the clues and try to interpret them into a cause and effect, I’m always wrong. There is always something new. He can’t tell me what it is. This time it is no exception.

My first thoughts were that I was pushing him too hard physically. He’s been making a good effort at basketball practice. Baseball is beginning. He wants to improve his skills but can’t without building some aerobic stamina. I also believe, and research has shown, blood flow to the brain through aerobic exercise help all people’s acuity and cognition. I know from my own running that it is true. To help his brain and his sports, I’ve been trying to increase slowly his aerobic capacity. He was running/walking around our block, which is approximately ¼ of a mile, a couple days a week, instead of riding his bike. When he first started getting cranky, he acted as if like he was physically tired. I started thinking I was pushing him too hard. I backed off on the walks. But he didn’t seem less tired. He behaved worse. Not only was he disagreeable, he’s also jabbering a lot more often about nothing. Excessive physical exercise was obviously not the cause. It took me a week to figure this out.

My next idea is that maybe he’s sick. Sometimes right before children who can’t express their symptoms get sick, they begin behaving poorly. Just when you think Mr. Hyde has come to stay, a fever, nasal congestion, a cough, some symptom lets you know this child is sick. I waited a week for the shoe to drop. Nothing. Still no Dr. Jekyll. He’s perfectly healthy.

Finally, I believe I have the answer. Last night Patrick was in the bathroom brushing his teeth. He tells his younger sister that his teeth are hard. She asks if all of his teeth aren’t hard. He replies, “No, just this one.” She looks at it and brings him to show me. His front tooth feels like there is a crevice near the gums. It doesn’t feel like a hole, but a long shelf. It could be a cavity, I guess. He’s never had a cavity in his life. It could happen. It could have been causing a dull ache in his mouth that he wasn’t cognizant of over the past couple of weeks. This must be it. So sure of my conclusion, I phone the dentist’s office to schedule an appointment. They ask about the tooth and look in the chart. They tell me the orthodontist put some enamel on that tooth to fill a gap. Part of the enamel must have come off. That might be annoying but not painful. I’m wrong again. I’m back to having no idea of what could be causing his behaviors.

It’s been a couple of weeks. I’m still searching for clues. It’s possible that the stress of learning the bus route is causing him to be disagreeable. New things are difficult for him. There isn’t anything new happening at TRACE, other than bus training. The school district has been sending the same aide every time they go. Patrick seems to like him. Maybe it’s his hormones making a come back? I’m running out of ideas. In Piccolt’s book, after the Mom misses all the clues he’s left her he tells her, “No offense, but you would make a lousy crime scene investigator.” This is exactly how I feel. I’m unable to read the clues or fine the clues. I make a lousy investigator. But, I continue to investigate. Because he can’t tell me what’s wrong.

Here’s a scary question, if I’m never going to be a good detective, and I work hard at it, who is going to be watching for clues if he moves into a home with someone else?

Sometimes it comes out of nowhere

2010-02-23T11:06:00.000-08:00

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

2010-02-22T13:39:00.000-08:00

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

2010-02-09T12:42:00.000-08:00

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

2010-02-09T11:46:00.000-08:00

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

2010-02-02T10:56:00.000-08:00

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.

2010-02-01T13:00:00.000-08:00

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.

Patrick’s First 15 minutes

2010-01-29T11:55:00.000-08:00

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

2010-01-28T10:44:00.000-08:00

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

2010-01-27T13:15:00.000-08:00

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

2010-01-22T11:49:00.000-08:00

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

2010-01-21T10:46:00.000-08:00

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!