Resume

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

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

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

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

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

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.