An ant in the toilet

I got out of the shower today, and saw an ant sitting on the edge of the toilet seat. Without thinking, I flipped the insect into the bowl. He began to swim around, first in circles, then in a straight line. Eventually he made it to an edge, crawled up about 6 inches, and fell back into the water. The more he fell in the water, the more slippery he became, and the harder it was for him to climb the edge of the bowl without falling back down. The ant climbed again and again, but never suceeded, so eventually I sat him on the edge of the seat, dressed, and left the bathroom.

I’ve been pondering, since that event, whether or not I should have helped the ant by moving him to the seat. Bear with me for a moment: a house ant lives an average of 6 weeks, or 42 days. 42 is half of 84, which is the average number of years for a white female human. So for an ant, one day is the equivalent of two human years, so every hour is a month, and every two minutes a day. Let’s say I watched the ant for about 15 minutes before I gave it a hand. That would be the equivalent of nonchalantly doing for a person what they had been struggling to do for themselves for over a week. I imagined being that person, struggling and struggling to do something, and then watching someone do it for me without a second thought. And I felt crushed. I felt like all my self-esteem rushed out of me in an instant, because someone could, without even thinking about it, do something which despite my best efforts I couldn’t quite manage to do. I also felt insulted at the presumption of the person who reached in to help, thinking that I wanted the assistance in finishing the task, because if I had tried for a week and had yet to succeed, it must mean I would never accomplish my goal without help.

And then I got to thinking about Charger. Every once in a while, he and I do a puzzle together, usually one with 9 or 12 pieces. Yesterday, he went and grabbed the 24-piecer off the table, one which he had never attempted before. I spent fifteen minutes watching him work with the puzzle. I guided and turned a few pieces, and encouraged the work he had done thus far. But once he had 12 pieces in, he couldn’t seem to make a match with the remaining 12. He worked and worked and worked, but got nowhere. So I, thinking he must be frustrated by all this work going nowhere, reached in and put most of the pieces in their place, letting him finish the last two or three.

In my mind, at that moment, I thought I was doing the right thing. I thought that the endgoal was completing the puzzle, seeing the picture the jigsaw would produce. I realize now that the picture was irrelevant. What was important about the experience was trying something which hadn’t been done before, and working on it to prove to yourself that it could be done. I missed the boat. I stepped in when I should have stepped back.

I went back  to check on the ant. He was again sitting in the water, struggling to find a wall that would lead him out. And though I watched with interest, I didn’t step in to lend a hand. I knew the ant would do it on its own, or die trying.

Getting it Wrong: Why Bad Press is so important

This post might seem a bit out of character for me, as I usually write about personal topics and tend to avoid the controversial. But I was surfing the web today, and a particular quote made me come to a dead stop. I knew I had to blog about it. The line went thusly, and was printed in the New York Observer in an article about the new movie Adam. You can read the full review here:

It is lethal to get involved romantically with any person with Asperger’s syndrome, since they care nothing about other people’s feelings, needs or priorities. Almost without exception, they leave you perplexed, riddled with doubt and totally depressed.

My first reaction was to be offended. I thought, “who in the world would write this about people with Asperger’s. It’s so off-base. I can’t believe he said that.” Then I went for anger, “Someone should tell this guy off.” Then understanding, “well I suppose if he had poor experience with more then one Aspie, he might over-generalize. But still.” But then I reverted back to anger. My issue is not so much what was said (I’ll let Sandy on AspieTeacher fill you in on why that was wrong), but that it was said. (Before you go all “censorship is bad” in the comments, hear me out).

I have Tourette’s Syndrome, and if you want to name the number one disorder the mass media has totally missed the boat on, it’s TS. To everyone but individuals with TS and their loved ones, as well as a few specialists, Tourette’s Syndrome is characterized by constant cursing, particularly the “f-word” or “n-word”. This is despite the fact that only 11% of individuals with diagnosed TS have corprolalia. It’s simply that the cursing is the interesting part, the one that sells tickets, and magazines, and newspapers, so who would ever include or write about a person with TS who doesn’t have that characteristic. As a result, anyone who I discolse my diagnosis to responds with either laughing or asking how often I curse.

We can’t let the mass media mischaracterize Asperger’s the same way. At this moment, the majority of the American public does not know the term Asperger’s, and of those that do, most aren’t familiar enough with it to learn how to spell it. Sure there was the movie Mozart and the Whale, but who really went to go see that? And there’s the Big Bang Theory and Bones and Law and Order:CI, but if no one ever mentions the word Asperger’s, very few people outside the autism community will make the connection. As a result, the public does not have a way to gauge the accuracy of information about Asperger’s, because they have no resource to compare new knowledge to. Thus, the account given by Rex Reed will be viewed as truth, and people will behave towards people with AS with that information in mind.

Now, I’ve heard from others on Twitter that no one really reads these articles, and Rex Reed is just a sensationalist looking for attention, etc. And that may be true. However, I didn’t first come across the quote in the full review. I first saw it in a list of critical reviews on a disability news site. The Reed Article is also directly linked to by Fox Searchlight* and Rotten Tomatoes. So the quote doesn’t come from a no-name blogger with a readership of less then ten. This is a famous man with big connections who will likely be believed by only mildly-curious Americans who do not make the effort to more thoroughly research Reed’s assertions.

We’ve already let mass media ruin the public perceptions of Tourette’s Syndrome, let’s not let them do the same to Asperger’s.

 *I’ve been notified that thanks to the effort of ASAN and the autism self-advocacy community, Fox Searchlight has removed it’s link to the Rex Reed article. If you have a spare moment, hop over to their website and thank them for respecting the autistic population and pulling the review.

Learning to Respond

There is a scene in the Adam trailer when Adam says to his female co-star, “I can see that you’re upset. But I don’t know what to do.” It was the line that hooked me into the film because I’ve expressed that same thought so many times myself.

But I’ve realized that recently, I’ve been saying that less and less. I’ve stopped talking and actually doing when someone is noticeably riled or hurt. And for that, I can thank Lawrence.

When most people get upset, there is no obvious clue as to how you should respond. Nothing about a crying person suggests that holding them or rubbing their shoulder would make the crying stop. But Lawrence isn’t like most people. When he has a need you can meet, he’ll show you explicitly what he wants. If a hug would help, he will grab your wrists and pull your arms around him. If he wants you to rub his shoulders or back, he’ll bring your arm to that location. If he just wants you to sit next to him and respect his grief, he’ll hold your arm at just the right angle that you won’t be able to get away without creating a disturbance in his calm.

He’ll also let you know exactly how long and how strong he would like the hug to be. If he wants a tighter grasp, he’ll push on your hands. If you try to let go too soon, he’ll pull you back, and if you insist on hanging on when he’s done, he’ll push you away. Every action you take, he provides immediate corrective feedback.

And slowly but surely, I’ve been able to generalize what I’ve learned from Lawrence with other individuals. It is how I was able to respond to my suitemate with a tight hug after a break-up, or rub my mom’s arm consolingly after a minor car accident. No longer am I the tenth grader who, in response to a friend’s tears, sat and stared for 15 minutes before someone else finally came into the room to see what the fuss was about, and, after a half-hearted confused gesture from me, began to actually console the bothered party. In situtations like this, I can now determine a correct response and act upon it.

I took the job with Lawrence because I thought I could teach him quite a bit. And although he is gaining language and play skills from me, I am learning a great deal more from him.

Carl: Phase 2

Carl reaches the end of 6th grade and he and mom attend the “Guidance Counselor meeting”, where they tell you how you will be placed in middle school. The Guidance Counselor tells mom that due to Carl’s disabilities they have no illusions that he will be able to handle an average “Regents” class or a language, so he is scheduled for all “general” (non-diploma track) classes. My mom insists that Carl will perform at the level expected of him. If he is placed in a general class, he will do general work. If he is placed in a Regents class with proper support, he will be able to perform at Regents level. And she also requires that they schedule him for a language, because all kids should at least be able to try to learn a foreign tongue. So entering seventh, Carl is signed up for a regents schedule and a Spanish class.

Grade 7: All of Carl’s supports except PT are removed. The school says that if Carl is capable of attending a Regents class, it must mean he doesn’t require additional assistance. His 504 now only includes extended time for exams, a scribe for standardized testing, and an allowance to circle rather than bubble-in scantrons. Carl aces spanish and social studies, runs a B in English, and a C+ in Science and a C in math. Carl begins to have to write book reports. My mom decides to read his write-up on the Crucible, and finds inside a paragraph devoted soley to Willie Mays (the baseball player). When asked, Carl explains that the book was so boring, he thought having Willie Mays in it would be the only possible improvement. Mom begins to have to read and discuss each report with Carl.

Grade 8: Similar grade profile. Carl attends the same social group I will attend 4 years later. He ceases to hang out with his grade-school buddies who have recently become interested solely in weed and porn, but finds a new friend from Karate and is accepted into that group. Carl meets with his GC to discuss career options post-graduation, and the GC suggests vocational school, because she “knows Carl can never succeed at a post-secondary institution.”

Grade 9: Carl switches GC to the man I’ll also have four years later, who is very supportive. Carl continues to excel in Spanish and History, but also to plummet in math and science. He is signed up for tutoring for both subjects, but his science grade still does not improve. Mom visits with his teacher who tells her that Carl is inattentive and does not participate actively in class, so she will not raise his grade. Mom states that Carl has ADD (which is of course already on the teacher’s confidential list). The teacher responds readily, “So tell him to pay attention” as if all Carl needed was some discipline to overcome this neurological disorder.

10th grade: Carl is switched into a slower-paced but still regents level math class, and his grades improve. He passes all his regents exams, even achieving mastery in Spanish and Social Studies. He joins the Spanish club, attends Driver’s ed, and gets his first job washing tables at Burger King.

11th grade: Finally a positive GC meeting. The GC encourages Mom to send Carl away to college, but she’s hesitant because his self-care is very poor. Although they work on these skills, by the time the year ends, Mom is still convinced Carl cannot go away to school, so they send inquiry forms to all the local schools. Carl passes his Math regents and signs up for the Spanish AP.

12th grade: Carl is accepted to a local state school, and decides to study computer science. He passes the Spanish AP, passes his math class (with the help of a tutor), and is able to graduate with a Regents diploma and an 86.4 average. He is in the top 1/4 of his graduating class of 600. He is also promoted to Cashier at Burger King, meets his first girlfriend, and receives his driver’s lisence. After years of struggle and hard work, Carl has proved all his nay-sayers wrong.

But college awaits.

Carl: the elementary school years

Given Carl’s recent success, you might assume that school had always been a breeze for him, which would be undeniably false. I thought I would supply you with a bit of a backstory on my brother’s schoolyears.

Preschool: Two months into Preschool, my mom gets a call from Carl’s teachers, informing her that Carl is verbally harassing the other students. When my mom points out Carl isn’t speaking, they both realize the teacher has confused my brother with another kid in the class, and probably has no idea which one of the 30 students Carl is.

Kindergarten: Carl refuses to speak for the first couple months, though he is now talking at home. The school wants to put him in a Special Ed class, but the only special ed. class available is children with no speech who are still in diapers and learn no academics. My mom insists he remains mainstreamed and recieves the “expert lecture”.

First grade: Carl’s first year goes poorly. He’s tiny and behind, so my parents decide to keep him behind. His second 1st grade teacher is wonderful. Carl learns to read and begins to meet friends. During this time his 504 kicks in, and he begins to receive OT, PT, Speech, and Resource Room in school.

Second Grade: No change.

Third grade: Carl seems to be doing okay in school. His math is far behind, but his reading is right on par. One day Mom gets an enraged call from his teacher. It turns out Carl is raising his hand to ask to use the bathroom, and in this class students simply take the pass and go. Due to Carl’s unwillingness to change this bathroom routine, he and the teacher do not get along during the school year.

Fourth Grade: Carl’s academics are average, but he still plummets out in math. One day, when playing at a neighbor’s house, the boys begin to throw balls at Carl. Carl informs the mom that he “just wants it to end,” meaning the ball-throwing. She takes it to mean his life, and calls the school. A psychologist is added to the list of services Carl is receiving.

Fifth grade: Carl is taken to an eye doctor after the nurse determines that he memorized the eye chart and they could not get an accurate reading. It turns out that Carl has very poor vision and is given glasses. His grades begin to improve.

Sixth grade: Mom gets a call one month into the year that Carl has yet to turn in any homework. My mom thinks this is ludicrous because she watches and helps him do his homework each night. It turns out that Carl sits in the very front row of the class, and so when the homework pile gets passed up to be handed in, he forgets to also add his to the pile. His math ability begins to increase due to an excellent remedial math teacher. The teacher suggests that Carl’s main problem seems to be in his attentional abilities, which are far less then would be expected at his age. Carl is seen by a psychiatrist and diagnosed with ADD. He begins to take Ritalin, and his grades reach the B+ level. My mom’s suspicions that Carl’s brightness was being masked by other conditions are confirmed.

Tomorrow, I will post the second half.

The quest is complete!

Which quest?, you might ask. The quest for the complete, nonecholalic sentence. Yes, today, Charger, for the first time in my memory was able to give a complete sentence without first being told each word to use. How did this miracle occur?

Our session was winding down, meaning that DDD time was fast approaching. So I told Charger he could go and get the book while I cleaned up the mess that was left over from last week’s babysitting nightmare (perhaps more on that later).

He walked up to Amy, our front desk attendant, and asked so sweetly, “Can I have Deisel’s Devious Deed, please, Amy?” My jaw dropped, as, I imagine, did hers. I opted to see how far we could push it. “Hey Charger, don’t forget to say _” But he beat me to the punch line. “Thanks, Amy.”

Somebody’s been taking etiquette lessons. He’ll have to teach me sometime.

Some ideas for working with echolalic speech

When your child’s speech consists almost entirely of delayed echolalic speech, life can be frustrating. You know he is physically capable of speech, so why is he talking at you instead of to you? You hold on to any single word that you cannot pin down to a video and cling to it like a life raft. You go to bed each night praying that tomorrow he will say a spontaneuos sentence, or even just one self-initiated word.

But what can you do to ease the transition from echolalic to spontaneuos speech?

One suggestion is to slightly veer off the script and see how your child will react. Be wary though, as the child may not respond well to an alteration in the script.

• Good experience: Charger was talking through a Leapster game where you sorted food products based on the first letter. We did three food items directly out of the game. Then when he paused, I threw in a food item that wasn’t in the game, for example saying “papaya”. He took the change in stride, going through the script until he got to the naming the letter part and said “p” which is, in fact, the first letter of papaya. This was a successful off-script moment.
• Bad Experience: Charger and I were examining animal cards. He was scripting from one of his many wildlife videos. One line from the film says “Three baby ____ and their mom, a ______ family.” Once we got to the seventh or eight animal, I added “and dad” to the line when I repeated it back to him. He responded “and Mom”. I responded “and dad.” He began to get worked up and I had to back down before he reached the point of no return.

A second option is to provide a physical representation of the scripted line.

     For example, when Charger scripts from his Ratatouille leapster recipe game, we make the recipe out of playdoh. This way I know he is connecting the words to a function, and not merely verbally stimming. We’ve been doing this for several months, and yesterday, he actually initiated his own activity based on a script. He was playing with a whale and a dolphin in the pool, and he placed them on a boogie board. He then scripted, “Get Ready, Get Set, Get Wet!” and dumped them into the water. I was as excited as if he had used some natural speech, because this was pretend play he had initiated all on his own.

I’m always looking for new ways to use his echolalic speech to create meaningful activities or conversations. What strategies do you recommend?

Manners not Morals

In the evenings at the triplets’  house, we sometimes have three adults and three kids, and I find myself working with the NT brother, Aaron. While the other two have goals for the summer such as: Learn 15 new signs (Josh), or Learn greetings and farewells (Lawrence), Aaron’s main goal for the summer is to learn to be more polite. After all, he is six, and the world of the six-year old revolves around farts (“tooting”), silly faces, and a need to always have the ear of whichever adult is currently busy talking to someone else.

But sometimes this can be difficult to work on. A major difference between the triplets’ parents and I are our morals. I’m from the north-east, they’re from the mid-west. We might as well be from two different continents. I’d never seen a gun before coming to their house, and they have moose heads on the walls and take Aaron hunting every weekend. They are strict Catholics, while I was raised Protestant but am no longer a Christian. So I have to be careful about what I say, because much of what comes out of my mouth is influenced by my upbringing which is naturally very different from Aaron’s. I remind myself before I work with Aaron that the focus is “manners not morals”. We stay away from topics like gun control and hunting, and on topics like tooting and discussions of bowel movements.

But in some scenarios, I’m not sure whether or not I should make a comment about his behavior or speech. For example, last night Aaron and I were (with his mom’s permission), playing the Sims. It came time for Aaron’s character to choose a wife, and I asked what he wanted his girlfriend to look like. He replied, “I don’t really care as long as she isn’t black.”

I was dumbfounded. I couldn’t decide whether or not the statement was rude, or whether it needed reprimanding. He wasn’t being racist; he was simply stating a preference. If he had said “all black people are dumb”, I would have told him off in an instant. But all he really said was that he found white women more aesthetically pleasing than black women.

I opted for a middle ground, saying, ‘Dude, that remark surprised me,” and then informing his mother of it when he was out of the room. If she decides to say something to him about it, I fully support that, and if she doesn’t, I have to respect that as her parenting decision.

After all, my job there is to teach manners, not morals.

But something about it just feels wrong…

Conversing with Kids

Yesterday, we left Josh playing with the hose to tend to a Lawrence melt-down. When I reemerged to check on Josh, he was in the arms of a neighbor who was putting him on the swingset. I thanked the neighbor for watching him and then began to push him on the swing.

Next to us swang “Llana” one of the new neighbors. She is somewhere in the age range of 7-9, I think. Llana was full of questions such as: “Why isn’t Josh wearing a shirt? Why is Josh still in diapers? How old is Josh? Does Josh go to school? Why does Josh like the hose?” I answered them all to the best of my ability.

Then she got to: “So what does Josh like to do, anyway?” I told her that Josh likes to swim and jump on the trampoline and watch television and cuddle with his mom and play in the hose and eat bacon. Then I asked what she likes to do. She listed pretty much the same activities.

She then paused and I saw a flash of insight. “I guess Josh likes to do a lot of the same stuff I do. Maybe he and I aren’t so different. He has autism, but he is still a kid, just like me.”

And for the rest of the afternoon she tried to include Josh in her games. She stopped addressing me and spoke to him. “Hey Josh, look at this! Hey Josh, Can I run in your hose? Hey Josh, wanna go on the trampoline together?” And the two of them grinned and giggled the whole afternoon through.

A friendship had formed. Because even though Josh has autism and Llana doesn’t, they’re both kids, and that’s what kids do.

Stumped

Charger and I have developed a pretty solid routine over the past several months. We tend to spend 15 minutes on each of eight different activities, usually three of which are 2-player games.

So Monday, I went in expecting to do the same. Charger, however, had other plans.

Last week I brought in a copy of “Deisel’s Devious Deed”, a Thomas the Tank Engine story my library was selling for a nickel. Charger went wild; he loves the story in side called “Duck’s Close Shave” which he knows from a video of his.

So Monday, he begins by running over to the book shelf and grabbing this book. One time, he reads me the story. The rest of the time he either quotes from the video or recreates his own version. Because he’s showing some spontaneous creativity, I let this go on for two periods (one half-hour). By the end of the half-hour, we have read the story together 11 times.

• So I take the book, and say, “Okay, all done Thomas the Train. Let’s find a new game to play.”
• Charger: “Not!”
• Yes, you need to come into the main room (where we keep all his supplies,) and pick something else.
• “Deisel’s Devious Deed.”
• No. Deisel’s Devious Deed is all done. We will read it on Tuesday.
• “Duck tried to stop. But it was too late. He crashed into the Barber Shop….” (quoting from the book).
• Charger, listen to me. We are all done Deisel’s Devious Deed. You need to pick something else.
• Not!

I walk from the room and give the intern secretary the book to place in her desk. I figured out of sight out of mind. I walk back in to the play room.

• Charger? What are you doing?
• Deisel’s Devious Deed. I remember seeing this one. Was it here? (now scripting from a memory match game)
• Charger, you will not find the book. The book is all gone for today. It will be back on Tuesday. (I write on the board: “Tuesday, Cale and Charger read Deisel’s Devious Deed.”) There, now we won’t forget.
• I remember seeing this one. Was it here?

He spends the next hour and a half opening every item in the playroom and main room looking for the book. I try and get him interested in play-doh, Uno, Robot Race, a different book. I offer M+M’s, toy snakes, toy cars, pencils with Lightning McQueen, anything I can possibly think of but he keeps on searching until his father arrives to pick him up.

When I tell his father about the day, he simply responds, “Sometimes Charger perseverates on things.” “So what should I do?” “I’ll be darned if I know. I’m as stumped as you.”

So readers, I present this issue to you. Tomorrow I will see Charger (today was cancelled due to previous engagements), and I know he’s going to want to read DDD. Do I let him read it or keep it hidden? If I do let him read it, at what point should we be “All Done DDD?”