Operating Instruction Explanation:I originally created “Operating Instructions” when Thomas was starting at a new middle school with a new teacher. He had already escaped from his previous middle school a couple of times and had done plenty to get in trouble (tossing the classroom). The problem with accessing Thomas is because he is non-verbal, he does not come across at first to be as smart as he is and what he is capable of both academically or in getting in trouble. You meet him at first and read what he has done and you think how can the two match up. I wanted to give this teacher the heads up.
It takes a while to get to know an autistic person. First impression often really does not give a clue to what are capable of, so giving a document to care providers, teachers,group homes, and behaviorist, about your child helps them and your child. Many of the documentations like school IEP, psychological reports, government center service files, and group home reports can be very institutional, not nuanced, and can have errors. It is good to have a document from the parent that covers home and from a whole life point of view.
When I have handed the document to various providers I have always received enthusiastic thumbs up along with a chuckle about the title.
“Operating Instructions” can also be used as the parent’s document in the conservatorship process. I was told by the Probate Court Manager that Thomas was well documented. It cut down on questions during the interview process.
Over the years, I have built upon and changed “Operating Instructions for Thomas”. It is below as an example. At the bottom of this document is Thomas’ “rap” sheet of the major stuff Thomas has done.
Lesson on patience and persistence.We know of an autistic child that going anywhere new or even getting on the bus was an ordeal. They had social stories for anytime they would leave the house that they would have to be gone over repeatedly. Even then, it could take a long time just to go a few feet or enter a threshold. Overtime with much patience, they overcame this aversion so that now they can go hiking with their child. The child even looks forward to going hiking. This is a kid that it would take an hour to go down the school hall to get to the classroom and now hikes in a much more varied environment.
Operating Instructions for ThomasThomas is an oddball autistic child, as Dr. xxxxx (his current doctor) will tell you. She has seen many autistic individuals over her years of practice. His intelligence is uneven. He figured out one of her hardest puzzles quickly. This is a puzzle even normal adults have a hard time figuring out. Yet he struggled with other tasks. Thomas has a medical diagnosis; he was born with less white brain cells and a thinning of his Corpus Callosum. Both EEG and MRI were abnormal. His EEG showed about half the normal brain activity. His MRI shows half the normal white brain cells and a thinning of his Corpus Callosum. His condition is rare, and people that do have it can often function normally in society. I am not saying Thomas will ever function “normally”. I believe the brain abnormalities are why Thomas is autistic. He is autistic coming from a different direction than most other autistic kids. Autism is a behavioral diagnosis and not medical. Most autistic people have a normal MRI and EEG.
Thomas does not stim. He unfortunately does not have soothing behaviors or objects like other Autistic kids. Thomas does like to sing and this does soothe him. He will also count backwards to calm himself down. His preferred calming action (as of 4/2014) is to go to his room or a quiet space. He has been learning to play the piano, and his prior school used the piano when he wanted a break. Sometimes he will jump up and down when he is excited about something. It is a learned behavior from being around other autistic kids most of his life. He has picked it up later in life. He has picked up things at various behaviors at different points of his life but then he drops them.
Thomas can focus and be on task if he is motivated and interested in what he is doing. Boredom and his mind starts working to cause possible chaos. It does take him time to process what is being asked of him (minutes) and he will often repeat what you say because he feels the need to answer. He often just says yes so that he does not have to process the question or when he feels people need an answer from him right away. If he feels strongly about something, he will let you know. I often give him a little time and then ask the question again.
Before puberty, Thomas was easy going, love to joke, able to focus, and not particularly aggressive unless provoked. He still jokes.
Thomas is relatively smart. Some things he does are smart like joking and figuring out how things work. Sometimes he makes unexpected mental leaps. He is able to comprehend abstract and some difficult concepts. The biggest problem is communicating them to him and his processing time. I think he is more mentally retarded than autistic.
Example of an abstract joke: One day when he was in elementary school, he was waiting for the bus in the front room. He yelled out “Bus, Bus, Bus”. His mom ran out looking for the bus. It was not there. He was laughing so hard on the couch.
He is very aware and observant of what is going on around him. He does not slip into his own world as many autistic kids do. He can have good eye contact. He does learn by observing other and he does want to fit in. A summer camp was very impressed that he was able to observe the cafeteria situation, see what other kids were doing, and then just follow along as if he had been doing it all along with no need for direction. I actually think at times it is good for Thomas to be in situations where some things are over his head as you never know what is sinking in even if it takes him longer to figure things out.
He is very interested in clocks and time. He has a good grasp of time and calendars and can keep track of days without a calendar. He likes math. He can add and subtract and has learned some multiplication in the past. I notice when things are important to him like a social story, he is very motivated to read the words and understand them. His doctor and teachers think he is smart relative to the obstacles he faces.
Thomas biggest obstacle is communication both receptive and expressive. It is very hard to know what is sinking in. He can think more than he can communicate and I believe this frustration leads to behavioral problems. He really wants to speak and be understood.
He likes to joke. He will say the exact opposite of what he wants or means. For example, he will say that he wants more school when I pick him up. I call his bluff and tell him Ok you can get out of the car and he laughs. He will say something is broken when he knows it is not. At one time, his mom was saying the car was broken and she could not drive him to school and he has to take the bus. Thomas played the game for days and said the car was broken. An Asperger’s kid trying to get his mind around the concept finally asked Suzanne if the car was really broken. You will have to read him to figure out if he is meaning the exact opposite of what he is saying. This can be a problem trying to figure out what he really wants. His elementary school special education teachers have said that he breaks many “rules” as to what is Autism.
He loves a variety of foods and loves to eat fruits and vegetables. He probably will be one of the few of all the kids eating his salad first. Loves Potatoes, Ripe Pears, Eggs, Lettuce, Carrots, Celery, and Bell Peppers. A raw sliced Bell pepper is one of his favorite foods, and he will often take a ripe pear over sugar. He is generally open to trying most foods and is not turned off by the color of the food or texture. He will try a bite of any food once if you ask him. This is how he found apple pie. He use to think it was funny that we ate lettuce. He use to laugh and say “leaf”. He can make his own peanut butter sandwich, toast, and other things. Like any teenager, especially one that has had many things done for him he needs prompting. He can brush his teeth and wash most of his body, though not that well.
Thomas is a threat to run away and has escaped from school/camp. Thomas has slipped away a number of times. One time he caught a bus, went downtown and caught the Bart to Pittsburg, CA (45 miles from home). They caught him in Antioch, which is the end of the line and where they clear the Bart train. I think the reason for him running away is that he is looking to be independent and adventurous. He was 14 years old and going through many of the same developmental stages as a normal kid. (Recent running away incidents are listed below.)
Thomas has a love hate relationship with art. Put a blank piece of paper in front of him and he gets anxious and can get aggressive. He likes instruction in what to do like faced with a coloring book we put dots of color in each area that he follows. Surprisingly a blank paper and watercolor does not make him anxious at least so far. He can do beautiful work.
As far as Halloween camp weekend, Thomas likes to carve pumpkins. He has in the past liked to stick his hands into the pumpkin and scoop out the seeds. When he was in preschool, he did this at school to the surprise of the teacher when other kids would not. If candy is being passed out, he likes to pass it out and look at all the children’s costumes. He also likes to get candy. He may or may not want to get into costume himself. As he has gotten older it is not.
He likes computers and has liked Google Earth in the past. He will get into street view and “drive” around the country. He has a very good memory for places and finding them on the map. He can find current and former caregiver’s houses and pretends to be knocking on the door on the computer screen saying is anyone there. He can find his cousin's house in Portland and even “drive” to the Portland airport from the house. One amazing thing that he has done a couple of times is “drive” to and find the house we had a family reunion at for just a week in Santa Cruz. He is aware of where he is and how to get back if he has been to the place before. He does have a very good map of the Bay Area in his head. He likes to give directions in the car by point where you should go and getting over in lanes before turnoffs. He is bored with Google Earth right now.
He also has anxiety about how people are driving and missing turns. He is the worst backseat driver, though he cuts me a lot of slack. I rode with him on the bus recently and he wanted the driver to be in the lane that set up for the next turn as soon as possible even if it was miles away. I am guessing bus drivers previously had missed turns? The last window he broke on the bus and attack the 1 on 1 came when the bus driver (new) drove right by our house and stopped 3 house down. Thomas was coming home from school.
The length of drive does not bother him. He likes to travel. In fact, he talks about going on trips throughout the year. Before he was 5150 this time, he brought down his and his mom's suitcase to his room. He would love to get back on a plane, but it is not a risk we are willing to take.
He has done other things on the bus since about middle school, like jumping out the backdoor, open emergency windows, and one driver reported he mooned cars behind the bus once (middle school). I have no idea where he got that idea. They use to try and put him in a harness but he could get out of it at will. One bus driver in middle school said she would put him in a harness and he was out of it about a block latter. He likes puzzles. He is up to about 500 pieces.
When he ran away, I always thought he would come back home eventually. I just worried he would be hit by a car. He is good about crossing at a light with just red and green or walk / don’t walk signals. He is not as good about stopping and looking both ways at crossings without stoplights. (7/2015) He has gotten better at this but I still do not trust him.
He is a good swimmer underwater and can tread water for a long time. At one camp, he always stayed at the deep end they could not get him to go in the shallow end where all the other kids were. He sometimes likes to play basketball though not a good dribbler but a surprisingly good free throw shooter. He generally likes to hike and can go for long hikes 4 hours plus. He used to love caves. He still does but does not get as excited.
We squeezed through that hole behind him. It is only 2.5 feet high.
Behaviorally, he can be very aggressive. He is tall and strong. Most of his aggression in the past was focused at his mom – hitting, pulling hair (yanking out clumps of hair), digging into her foot, and destroying or trying to destroy her shoes both on and off her. His behavior to his mom is definitely based on a lot of habit built up over the years. He does not like it when an image on TV screen skips or shows some sort of abnormality. He usually breaks the DVD. He sometimes breaks the DVD just to go to time out. This stopped at College Hospital. He has attacked his father a few times but generally refrains from it. He has great anxiety about the time, the calendar and things that are happening in the future. He gets very aggressive about things he does not want to do or about to happen. He has had a love /hate relationship with school. Right now, he does like school.
He is low incident but high intensity acts when they do happen. He can go for months without any major problems or problems at all, especially in new situations.
He can also tolerate situations he does not like for a long time allowing his frustration to build until he explodes. He recently (3/2014) pulled out his bedroom door and frame out of the wall at his group home because he did not like school. He told his speech and language therapist through of language program on his Ipad that he was bored at school and that the other autistic kids were bothering him. He made great strides with the group home speech and language therapist, xxxxx. He was kicked out of this high level negotiate price home 8-2014. More below.
High noises from other autistic kids really bother him. He wears earplugs. He has in the past worn headphones off and on (right now on). Flapping or rocking or other sytming behaviors of autistic people can bother him. When they get into his physical space, it can really bother him.
Thomas may or may not respond to awards for good behavior. He sometimes just decides he does not want the reward and will behave badly. It can be premeditated.
I think one of the main root to Thomas' frustration and lashing out is that he is aware to some extent of this disabilities and limitations. It bothers him greatly. He gets thinking about himself and he gets upset. He use to put himself in a trash can and say “Thomas is broken”. He sometimes is serious about it, sometimes he is joking about it. You have to read him. He will also use “Thomas is broken” when he is sick. This self-awareness of his disabilities is very unusual for someone with his disabilities. He loves doctors because he is always hopeful that they could fix him. This has faded with the years as I think he realizes they have not. When he first went to see a psychologist, Dr xxxxx, the first words he said to him were “Help me”.
He is very good at the dentist or getting his haircut. At the dentist, he will open his mouth and let the dentist go to work. Dentist that have worked on other autistic kids are always surprised by how willing he is. He understands what they are doing. He is very good about taking medicine because he wants to be fixed.
He will defend himself very aggressively if another kid attacks him. It is like pulling the pin on a hand-grenade. One good thing is that if a kid attacks him it only happens once. He rarely attacks other kids without being provoked or the kid getting in his space (even then, he can be very tolerant).
This seems to be in the past and gone away: When in time out he will often put holes in walls and try to kick down the door. At home his room walls are covered in plywood and the door is reinforced. This has dramatically brought down the kicking. He will try to pick the locks. If the lock is a simple wire key lock and he has something in his room that will work, he can open the door. When he was about 6 years old he had these plastic rings that were held together by a plastic insert which he tried to use to open the door. At 6 he didn’t quite have good enough fine motor skills to hit the button in the lock. I thought it was really smart for him to realize to pull apart the rings and to use the insert. Motivated he can figure out a lot.
He has taken apart things but mostly out of curiosity. Unfortunately, he is not gentle. He took apart the insides of a computer once. I had to encase the computer in wood. He breaks computer mouse buttons from time to time so we use a touch pad/keyboard.
He has some knowledge as to why he has been in a group home. He talks about Thomas "P " an autistic kid he knew in elementary school who went to a group home because of behavioral problems and age of parents. He really liked living at Liza’s Home, his past group home. He often asks us when the new home will be available. Like many teenagers, he has a love hate relationship with his parents, but has not wanted to live at home with for awhile.
Thomas is very relationship oriented and connecting with the teacher, paras, and therapists will make all the difference in the world to him responding and wanting to go to school. He will light up.
Some of Thomas Antics:
- Fall 2010 Marina Middle School twice – once to a nearby playground. The second he was caught at the Marina Safeway probably headed to Fisherman’s Warf.
- End of December 2010- Ran away from 1 on 1 at Fisherman’s Warf, police called, caught by a guard in an elevator near Fisherman’s Warf.
- April 2011- Escaped from UCSF Medical building while waiting for a blood draw. He caught a bus downtown, got on BART, and was caught in Antioch 45 miles away from home. He had no money. Police called.
- May 2011- Escaped from 1 on 1 at Planet Granite at Christy Fields, walked across the Golden Cate Bridge, caught on the Marin side of the bridge when a woman tried to talk to him and realized something was wrong and called the police.
- May 2011- Escaped from home caught by me in his pajamas and bare foot waiting for the MUNI to go downtown.
- May 2011- Escaped from home this time he successfully, caught the MUNI downtown, got on BART, and caught by BART police in Berkeley. He had no money. Police called.
- August 2011- Escaped from parents in Redding, CA. Caught by Dad about 1 hour 45 minutes tracking him along a multi-use pass and then a trail and over a bridge.
- John Muir Hospital Psychiatric Unit Escape attempt- During the night time, he apparently had been making the hole in the wall silently. They were doing the 11:00 PM rounds when they caught him. When he got caught he quickly tried to kick it out bigger.
They didn't know what to make of the hole making until the next day. I talked to the doctor and I told him about his past escaping. When they had caught him the hole was not yet quite big enough for him to squeeze through. The hole was being made in an area of the wall where if it had been big enough he could have escaped from the psychiatric unit into a stairwell. The next space was outside the unit. The BART station is only two blocks away. They say you can hear the BART trains. They then put a 1 on 1 to monitor him all the time. When in psychiatric units he does regular rounds of the exit doors to see if any are open.
Thomas was with his parents for a regular Saturday excursion. We were planning on taking the 12:30 Roaring Camp train. We usually get to Henry Cowell about 10:30 buy tickets and go on a little hike before taking the train. We had done this about 3 times before in the last two months.
We were on our hike when Thomas escaped from us in the picnic area of Henry Cowell. I, the father was unable to run after him as I was recovering from a collapsed lung from being doored by a parked car while on a bicycle less than a week ago on Sunday. This happened about 11:35 AM. We tried searching for him thinking he would go to the Roaring Camp train station. At 12:05 PM we called the police.
An initial search was done of Henry Cowell by the police. Search and Rescue was called in. I told them I suspected that he had gotten on the railroad tracks that Roaring Camp uses in the “on season” to run a train from Roaring Camp to the Beach Boardwalk. An officer walking the tracks was getting reports that a kid fitting Thomas description was about a half mile ahead of him. The track and are used by walkers and mountain bikers.
A witness made a very positive ID of seeing Thomas at an intersection just within Santa Cruz city. Thomas was stuck in the medium of a very busy intersection waiting for the walk sign. Once the cars stopped he rain to the other side. We suspect that he went back to the train tracks and continued walking on. The train tracks crossed busy highway 1 very within a quarter of a block of the intersection. This is noteworthy because apparently Thomas made the choice to go to the intersection to cross the street instead of continuing to follow the tracks. He also apparently does have a good understanding of cars and intersections and crossing the street. The tracks cross many places over streets on the way to the boardwalk.
Because of the above id, Search and Rescued moved their command into Santa Cruz, the Harvey Park Centre. There was an organized search of Santa Cruz. At one point Thomas walked out onto the Santa Cruz prier before getting to the Santa Cruz Beach Boardwalk as there was a called in sighting of him there. The train tracks come close to the pier. Thomas indicated in the debriefing that he did go on the prier.
Thomas was found at approximately 5:30 PM at the Santa Cruz Beach boardwalk. He was brought back to the command post. He suffered a blister on his right big toe but was OK. Unfortunately, he I think was happy with himself.
Another thing to note: While Thomas did take his jacket and his sock on his right foot off at some point during his journey. He carried them with him instead of shedding the clothes. Makes it harder to track and find him, also not typical of kids especially on the autism spectrum.
- For running away, the next Saturday at xxx’s home he could not see his parents for the normal Saturday outing. That Saturday went uneventful until about five when I guess Thomas realized we were not coming for real. He then attacked staff put holes in the wall and other property destruction. Later that night, his night 1 on 1 heard noise in his bedroom and investigated. Thomas was quietly packing his bags with his clothing. The night 1 on 1 talked Thomas into staying. xxx’s home counts this as an escape attempt.
- Thomas kicked out of highest-level group home on August 14, 2014. He was also 5150 that day for trying attack a group home resident, staff, and property damage. He spent 1 ½ weeks in the Mills Hospital Emergency Room and then another 9 ½ weeks in Mill’s psychiatric ward. Mid November 2014, he came home with 24 hour 1 on 1 support as needed.
- In December 2014, Thomas was 5150 twice for attacking his mother. One of those times he was hospitalized at John Muir psychiatric ward for a 1 ½ weeks.
- Thomas started at Lowell High School with no problems for about 3 to 4 months. Eventually, he was moved to his own classroom with regular teachers coming in and teaching him throughout the day. He was banned from the high school building, to a portal classroom, and eventually effectively suspended. I am not sure what exactly he did to cause all these moves and eventual banning.
- In June 2015, Thomas eventually went to a school that was 45 minutes away with just him, a bus 1on1 and the bus driver making the commute. There were incidents at school and a couple broken bus windows.
- From June 26 to June 29, 2015, we had two police visits, 4 broken bus windows, an escape out of one of those windows, a broken ankle bone, and running away for 7.5 hours on that broken ankle.
- June 25, 2015, Thomas broke a bus window 3 miles from school and escaped out the window. During the escape, he broke a bone in his ankle region. He was talked back on the bus.
- Saturday, June 27, 2015, Thomas attacked his 1on1 at home. He took off his boot for the broken bone and put on his sneakers. He left the house with no money and was picked up in Lafayette, CA about 45 miles away from home. He was gone for 7.5 hours. Police picked him up in a residential area of the town. He had to have used two modes of public transportation to get to that spot. Since he was gone for 7.5 hours who knows what he did. I suspect that once he made it to this town, he went hiking around a reservoir for at least part of that time. He said he went hiking. He was also not hungry when I got him home and he had not eaten breakfast that morning. So somehow, he got food with no money.
- Monday, June 29, 2015, the new bus driver overshot our home delivering Thomas from school. Thomas broke a bus window and attacked various people. Police came. He was 5150 hold, and later 5250 hold because no local psychiatric hospital would take him even though they had open beds.