The Evolution of Friendships

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

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.