The Regular Tiger

A little past 10 on Tuesday night Alex jackknifes up in his bed, throws down his blanket, looks at me, raises his arm and moans, “Tiger.”

“I don’t have it, Alex. Did you have it in here?”

Does he mean the $5, four-inch tiger or the $4, four-inch one with his (her?) head turned slightly to the right? Or the two-inch one that came in the Taiwan-made $1 set that also contained a little plastic lion, a jaguar and – ha ha – a zebra. A food chain for a dollar. Sometimes Alex’s thing for plastic animals is a real riot.

Sometimes. “Tiger? Aw, tiger.”

TIGER! He’s on his feet and lifting his mattress to peer under the bed and around the bedframe. “Aw tiger, tiger. A-ba-ba-ba!” Alex usually uses more words than this.

So do I. “Alex, I don’t have it and I don’t know where it is. You have to take care of your things, Alex. Where did you last have your tiger?”

“Ti-GER!” He’s back out to the living room, where I find Jill shoving her face under the couch and doing her part to erase what’s normal in our household. “I’ve gone through all the regular tigers,” she says. We offer them to Alex. This one? This one? “Aw, tiger.” Back to the bedroom where he goes over the bedframe one more time and starts looking under the radiator next to his bed.

“Alex, we will find it tomorrow. You have to go bed now. Here-” I switch on a flashlight and hand it to him. Alex has never used a flashlight. What a good parent to turn this into a teaching moment.

“Tiger…”

“Alex,” says Ned from the other bed beside us, “go to sleep!”

This tiger is going to be a bitch in the morning.

Alex has a ton of plastic animals – too many to keep straight, Jill thinks – standing at attention along the edges of almost piece of furniture in our apartment. The two-inch-long elephant on the edge of the dining room table. The pigs on the hutch, flanked on one side by the lion and on the other by the lioness. The big elephant, the rhino and the turtle. The plastic cat, the plastic salamander and otter and aardvark and chickens. Animals detailed down to the ruffles in the fur and the shine of the eyes as they stare at you.

Somewhere in their rows is Alex’s idea of order. Those with ASD may develop obsessions for several reasons, according to Great Britain’s National Autistic Society, including:

• obsessions may provide structure, order and predictability;
• special interests may be ways to start conversations and interaction; and
• obsessions may help people relax and feel happy.

Fine but not when the school bus is coming. On more than one school morning Alex demanded a lost plastic animal (Rhino! ‘potomos!) minutes before his bus pulled up. “Alex, come on!” “‘potomos!” In the lobby his hand would shoot up and he’d bolt for the elevator back to our apartment. If we even made it to curbside on those rotten mornings, he’d wriggle back off the bus and sometimes lay on the pavement of the street.

So, Wednesday. I turn on the coffee and wake him up. Maybe he forgot all about it overnight.

“Tiger? Tiger.” His arm is up as his eyes still squint with sleep. What’d Jill once say about this? Life comes to a halt.

“School, Alex, then tiger. You’ll find it when you get home. Mom’s working from home today and she’ll look for it.” Did he toss it out the window, I wonder? I show him the plastic cat, the big tiger, the little tiger, the other big tiger. Wrong. Wrong and wrong. You can’t fool him. Can’t reason with him, either.

“Aw tiger-” I actually get him into his hoodie, out the door and down to the lobby where we sit to wait for the bus. Find it tomorrow, mom will look all day, time for school when he snaps, “Aw elevator!” and he’s up and off.

Jill doesn’t seem surprised when we come back through the front door. “Kind of makes you want to die,” she says. Should we scream and yell? What happens if he does this again tomorrow? The next school day? For the rest of his life? It’s like a peek at living with an autistic adult who doesn’t, when we get right down to it, have to do a thing he doesn’t want to.

“We’re very unhappy with you, Alex,” we say. “Very unhappy.”

“Tiger? iPad?”

Well by god I haven’t lost that much sense as a parent. “There won’t be any iPad, Alex,” I say. “If you stay home today you will clean your room, do the laundry, wash the floor. We’re very unhappy with you, Alex.”

“Very unhappy with you,” he says back. Will he get the point? He has absolutely no reason to.

We call Abby, our neighbor who watches Alex after school and who’s built quite a connection with him, to see if she can help watch him during this day. She comes right up wielding what she seems to think is the answer: Alex’s plastic collie he left in her apartment on Monday. “Alex, is this what you mean by tiger?”

He stares at her as if he just watched somebody walk into a wall. “Tiger?” he says.

“He can be stubborn,” Abby says.

Defiance in an autistic child “is virtually a given,” according to an article on the subject at globalpost. “Autistic children, lacking the social and communication skills that most people use to solve problems, often spontaneously respond negatively to small conflicts. Sometimes it seems as if their defiant behaviors are planned but this is not always the case.”

I couldn’t say one or the other when he bolted moments before the bus came. My spontaneous response was to realize that Jill had to stay home today with him and I’d have to stay home tomorrow and what happened after that was up to Alex and our bosses.

At my desk at work, I keep thinking how he’s home but if I call to see how he is, no illness is the enemy this time. I don’t call. Instead I rehearse what I’ll say to him tonight: And you’re going to school tomorrow, aren’t you? … And tomorrow, school ... The bus is coming in the morning and you’re getting on it.

What will he reply? Repeat it back, which for some stupid reason I still take to mean agreement? Say, “I’m sorry, I’m sorry?” and pat my arm? Or just more “Tiger”?

No easing of my mind will come until Thursday morning at 7:25, when he climbs into that bus. Even then, how will I avoid thinking, What about the next day? All I can do is hope he just gets better.

(On Thursday morning Alex goes to school as if nothing happened. On Friday morning, he again refuses to go anywhere near our front door without a plastic animal. A chicken.)

This post is also available online in the Summer 2014 issue of Autism Spectrum News at http://www.mhnews-autism.org/back_issues/ASN-Summer2014.pdf#zoom=100

 (See the National Autistic Society’s writing on obsessions at http://www.autism.org.uk/living-with-autism/understanding-behaviour/obsessions-repetitive-behaviours-and-routines.aspx).

(Read the globalpost story at http://everydaylife.globalpost.com/defiant-behavior-autistic-children-16989.html).

In the Papers

 

Jill was awful mad yesterday morning. “I’ve asked you over and over to clean up your work area and do something about this pile on top of the printer,” said her voice on my cell phone. She was home, trying to print a label to ship a refund to some nutjob on eBay.

“I’ve asked you to do so many things you never do,” she said.

“Don’t make this more than it is, Jill.”

“I’m not making it more than it is.”

Maybe not (though I eventually discovered that her trouble stemmed from her plugging the cable into the wrong hole on my computer). “Pile” referred to an 8-inch skyscraper of papers, folders, envelopes, scraps, notes and hopes on white, red, yellow and green, among other colors, paper, written in ink, pencil, crayon and toner.

The pile is a stack of curling communications technology that makes me wonder if the system that coughs it out cares, when you get right down to it, what happens to Alex or they’d invest more money in talking to me. A stack of feelings I don’t want to face, most of those feelings also about as stable as the pile itself.

“Those papers represent that for me, too,” Jill says.

“The amount of paperwork generated by kids with special needs is astonishing,” writes Abby Perets, mother of five, in “How to Organize Paperwork” at SheKnows Parenting. “I store the medical records for four of (my children) in a single manila folder. Each child has two or three sheets of paper in that folder. Then,” she adds, “there is the file for my special needs son. His ‘file’ is actually a series of expandable pocket folders enclosed in a carrying case, a few binders and in his own drawer in my filing cabinet.

“It’s important to keep that paperwork organized, even though the task can seem overwhelming.”

Alex’s homework with pictures of a farmer on one page and, on the next, his unbelievably low scores on an IQ test. Summaries, opinions of professionals whose faces I can’t recall. Test results, crooked photocopies running on white paper like train tracks across snow. Applications for camps, respite programs, schools. Pronouncements about Alex from doctors’ offices and other entities that stubbornly (or because some lawyer told them not to) refuse to use email. (How come my typically developing son’s school uses email but Alex’s doesn’t?) Between jobs and kid stuff to read, sign or throw away, I wonder what I’ve finished even long after it is finished.

Coffee stains (hope it’s coffee …) on IEPs from the distant PAST. Fat packets from residential schools wanting to know about Alex’s medicine, diet, anger, birth, sex habits, wake-up time, education, pregnancies if any, interests, sensory issues and his father’s knowledge of punctuation (“Describe your child? … ”).

I kept most of this stuff in case we needed to build a legal case to get Alex cleared for a residential school. How am I supposed to dig Alex’s future out of such a pile? What do I know about documenting a legal case? Where did I read I was supposed to save all this paper and piss off my wife? I don’t like that the universe sent these papers my way.

This letter is in regard to Alexander Stimpson’s application for residential schooling.

Please complete the questionnaires in their entirety.

To expedite review of your correspondence, please include the following information.

The pile recruits from the normal. Our latest tax return’s here; before I stuff it into the top of Jill’s closet (while she’s not looking) to join 1040s from the Clinton years, I check the IRS site to see how long to keep old returns. I always thought seven years. The IRS says keep returns for six years at most (unless you’re a crook, in which case don’t listen to the IRS). If you didn’t file a return, says the IRS, keep it indefinitely.

How long do people whose sons can hold a conversation keep anything anymore? My wallet swells with ATM receipts. “It is a good idea to keep the receipts,” I read on some discussion board, “reason being that the dispensation from the ATM and the debit to the account are async process. There are multiple handshakes during this process between the hardware of the ATM, the software controlling the ATM and the core banking software. like any software programming, there are chances of errors, ie amounts being debit wrong due to bugs, or duplicate of transactions being posted.” Got that?

Jill tends to create more piles and address them faster. When Alex was still a baby living in the hospital, she rigged a half-dozen manila folders in a rack to process, and eventually throw out, paper from insurance companies. She luckily never confronted today’s blizzard of Explanations of Benefits from insurers.

“This is a not a bill!” it says across the top. “Payment Amt: $0.00.” Then why do I have to think about it? Don’t make this more than it is.

Samantha, autism mom writing on the blog Simply Organized, tells us about the labels on her special needs binder:

·        Contact Info for Therapists;

·        Current Therapy Schedule;

·        School District (this includes IEPs);

·        Assessment Results;

·        Medicaid;

·        Sample Medicaid application;

·        Evaluations.

Abby chimes in:

·        Start by simply gathering all the paperwork for your child. Anything related to your child’s special needs goes in the box. You’ll get a sense of how much you have and see that it can be corralled.

·        Find a safe place for the box, and when you think you've tracked down all your paperwork, give yourself another week (to find more).

·        Track down smaller boxes. You should have a sense of your categories, so you may be able to label those boxes already: insurance, school, state services, private therapy, medical bills.

·        Over the next week or two, work in 15-minute increments to sort your papers into boxes. Set a timer – don’t try to do everything all at once. Don’t worry about ordering documents, just sort. Put in 15 minutes once or twice a day.

·        Create digital copies.

Wastebasket to my right I sift and toss, read and toss, sift and read and toss for a 15-minute increment. Along the way I find an old copy of Elements of Style and a silver heart Jill bought for me a few years ago in Mexico. (“You never even unwrapped it!”). Out goes sheet after sheet.

I know I won’t need it. Why did I keep it? If I need it I can get a copy. Why did I keep it? For the same reason anybody keeps anything: No one told me what else to do with all this paper and still keep everyone safe.

(Read Simply Organized at http://besimplyorganized.blogspot.com/2012/10/organized-special-needs-paperwork.html).

(Read Abby’s complete entry at http://www.sheknows.com/parenting/articles/814462/create-an-organized-medical-file-for-your-special-needs-child-1).

Going

 

Recently we visited our first potential residential school for Alex. The car service whisked us for two hours to a sprinkling of one-story buildings across what no doubt was once a meadow. These schools seem to be mushrooming and expanding; many of the buildings smelled of new lumber and of crisp appliances just released from cartons.

The staff made us welcome, fetched us bottles of water and said Alex would spend most of our visit in a classroom. “No!” said Alex, pulling away. “Car!”

We won’t even go there. Jill sat with him at a classroom computer for a few minutes while I slipped out; soon she followed and we headed to the office of the admissions director, a soft-spoken and kind man named Tommy, to answer questions about medication and behavior until the phone rang.

Tommy picked it up, listened for a moment then turned to us and said, “Alex just vomited in class.”

Jill was first, as usual, to the say the sensible thing. “Alex is not sick…”

Later in our visit I talked to the teacher. “Oh, he did it in the wastebasket,” she reported, sounding kind of proud of Alex, “and afterwards he went into the bathroom to wash his face.”

Just as well: We want to see how new professionals respond to bumps in Alex’s day before we drive away for real and leave him behind.

“Are you considering residential placement options for your loved one?” asks an online primer. “No matter how much we love our child, teen or adult family member, and make every effort to care for her at home, a person with autism may need higher levels of specialized care, supports and supervision, which may better meet their needs in a residential setting. Yet coming to terms about finding safe and suitable residential placement options for your child or loved one outside the home and into a supportive community residence can be distressing and hard to do.”

(Read the whole primer from Child-Autism-Parent Café at http://www.child-autism-parent-cafe.com/residential-placement.html).

Three days later, the school called. “Our staff has met here and we’ve discussed it and we’d like to offer Alex a spot,” Tommy said.

“Can you give me a time frame on that?” I asked. Six months? A year or two?

After all approvals are greenlighted, Tommy said, “about three weeks.” This spring wouldn’t even be over.

Ever work toward and believe in a goal only to reach it and suddenly you’re going to have to live with the whole idea? I grope for excuses to myself. This school pulled the trigger with suspicious speed, for example. (So did my current boss, though, and my job’s near perfect.)

Alex is going to be gone, to this school or to some other, soon. His bed is going to be empty for weeks on end. I’ll no longer see him naked after his evening bath and rocking on his stiff legs, or tell him to hold it down while he whoops to the beat of Elmo on his iPad; I’ll no longer hear him say, “Quiet mouth.”

No more “Dad-dy!” or “Aww, I’m sorry, I’m sorry” while he pats the arm (often hard) of someone who’s upset even if he had nothing to do with making that person upset. When he coughs hard enough to rattle the windows and strain his throat, they won’t be my windows anymore and I won’t hear him say, “Easy easy, calm down.”

I won’t hear Alex again until he comes home for about five weeks of vacation throughout the year. “What are we going to do in those times?” Jill asks. “We don’t get five weeks of vacation.” I never thought of that. I thought how he might wail and cling to my leg as we got ready to drive off, but I never thought Alex would be someone we’d welcome back temporarily – and calmly – during what I tell myself is his period of college.

How else am I supposed to think of it? Residential schools offer what Alex needs most now: a school day of vocational training that doesn’t end at 3 p.m. We tell ourselves this whole campaign is for Alex’s education – as we wend through the process that does seem more and more true to me – and that we must do something to bust what appears to be his growing boredom.

These schools also offer parents sudden peace and quiet back home. A part of me wants that peace, wants to turn his bedroom into a den with a moose head on the wall and a pinball machine in the corner. (Be a little cramped since Ned will still live in there, too, but you get the idea.)

Alex needs college and what I feel is of course no different from what parents of the typically developing feel when kids leave the nest. Still … his rumpled, empty bed. Or the bright white mattress stripped of bedding until one of those five weeks looms.

Janet Grillo, director of the movie Fly Away and a parent of a special-needs boy, called it “that hard moment when I had to recognize what I couldn't control and get the help that my son and I needed.” (Read the Child Mind Institute piece on her decision at http://www.childmind.org/en/posts/articles/2013-10-15-residential-schools-how-help).

Not sure I call it a hard moment (see “pinball machine in the corner”) but only because getting Alex into a school has consumed way more than a moment. The process has stretched out for months. The stages in securing a residential school:

·        Wrangling for approval with the various agencies.

·        Seeing if the schools got Alex’s information.

·        Meeting at the schools. (One school set up an appointment without even checking with us first and then called an hour after the time of the appointment – which we didn’t keep – to chide us. Who in the business world would do that?)

·        Assessing programs based on almost no knowledge and no experience, our questions guided only by laymen’s common sense. Is a single bedroom better than a double? Are there alarms on the doors and windows? Any staffer have family members with special needs? Where are all the bathtubs?

·        Waiting for the callbacks.

Coming to terms about finding safe and suitable residential placement options for your child …

“Residential” and “suitable education” do describe sending off the typical freshman. “Safe” doesn’t figure much into res-school prepping for the typical, unless your lovely daughter wants to go to college at 1 a.m. in the South Bronx.

As if perfectly typical, Alex is going in a new way into the world. We have no way to know if we're communicating to him what will happen or even know for sure if he wants it to happen. I can only say he seems to want it and that most likely he will no longer be here.

Alex Trek: The Next Generation

 

We’re starting to work on finding Alex a residential school.

The NYC Department of Education has greenlighted the idea – after many months and meetings – so now yet again in our son’s life Jill and I must hope we ask smart questions about a situation we’ve never been in before. As once upon a time we didn’t know a neonatologist from a necromancer (still don’t, really), now we have to figure out a whole new field of professionals: the ones who’ll oversee Alex day and night, in classroom and at play and asleep, for the next several months or years.

“I intend to ask how often they get off campus,” I say.

“That’s a good question,” says Jill.

Unlike in the NICU, at least I won’t have to assess professionals’ skills I don’t know (medicine, science and a little necromancy). Still, it’ll be where Alex lives, and he hasn’t lived anywhere except with us since he was in the NICU. What exactly do you have to know to work in a residential special needs school?

Random Googling turns up “generally, a two-year post-secondary diploma in a related field, such as an Educational Assistant-Special Needs Support Diploma (EA-SNS) or a Social Service Worker Diploma (SSW). Alternatively, a post-secondary degree in a related field such as Physical Education with a Disabilities specialization will also meet educational requirements for many agencies.”

Sounds reasonable. What do agencies look for?

“Candidates with the following skills and characteristics: good problem-solving and creative thinking skills; mature, empathetic and non-judgmental; an ability to adapt and to work with others; an ability to handle emergencies and work calmly under pressure; an ability to communicate well (verbally, non-verbally, and in writing).”

Well, Alex himself has most of those qualities. He wasn’t even three when he figured out to stand on the open dishwasher door to reach the Pringles. He seems fine with others as long as the iPad’s charged; he communicates non-verbally all the time. He judges no one and I’ve never seen him react to an emergency, though occasionally he cause one.

“How big is your son?” one school wants to know.

“Make sure you see the school when school hours are over,” a friend advises. “That’s the important part of any program.”

Alex seems ready for what I tell people will be his equivalent of college. He seems bored at home, always looking for the next thing (“Camp?” “Rec program?” “See Aunt Julie ‘n’ Uncle Rob!”). “Takeabus to camp?” he says. “Gonna take a cab?”

“In a few weeks, Alex. You’ll go back to camp in a few weeks and when you come back on the bus we’ll catch a cab to come home.”

He likes his winter camp, about a half-dozen long weekends sprinkled between Labor Day and the end of April. He hated it years ago but likes it now; he grew into it. In fact Alex’s service coordinator, one hell of a professional who for years has helped run down services for him, emails his camp. “Alex is in the midst of a residential-school application process and support plans are requested for the services he receives,” she writes. “Do you have any paperwork on how he has been doing?”

She’s right on top of things. I hope we get more professionals like her because Alex keeps growing into and out of a lot of things. He shaves now and his waistline makes 14-regular khakis bulge at the button. In 62 months, he’ll be 21 years old.

“You’re worried what’s going to happen to him when he’s 21?” a teacher asked me once.

“No. I’m worried what’s going to happen to him when he’s 40,” I replied.

Some people like Alex never make 40. Take the 29-year-old man who died last summer after police Tasered him in his Long Island residential home (http://longisland.news12.com/news/maryhaven-center-of-hope-resident-dainell-simmons-dies-after-police-struggle-in-middle-island-1.5764785). I turn up this story on the Net. I Google all residential schools nearby and run them through the search engine and all local news. I look for police activity.

“Oh god, police activity,” Jill replies. “Okay. Good thinking.”

“Police were called,” last summer’s story reads, “after the resident had a violent outburst that lasted for 45 minutes. Staff members say he banged into walls and hit staff members.” He fought when cops tried to handcuff him before a ride to a hospital for psychiatric evaluation; cuffs are standard procedure for such situations.

“Could there not have been a better way to deal with this once the cops arrived?” one online commenter on the story wanted to know. “Couldn’t the cops have sat with him for a while until he calmed down?”

Comments mushroom about this and other, similar stories involving abuse, violence, theft – sometimes from workers and sometimes against them. “How do you sit with someone who is intent on hurting you and is 250 pounds?” another commenter wanted to know.

“Feel bad for everyone involved,” another wrote. “The kid, his family, the staff and the police. Having been in a few situations like this while I (worked in a residence), there’s no textbook way of dealing with it.”

Not every residential sitch dissolves into fatal police action, of course. One mom reports her son was showering in his residence when he heard something interesting on the TV and who – quite sensibly in the rawest meaning of sensible, like much autistic behavior – shot into the living room right in front of a two female workers and a woman who lived at the residence. “Without a towel,” mom adds.

I can see Alex doing this, shaking with laughter and bringing his hand to his mouth as his towel falls off his waist to the floor. (Skipping ahead a bit in this article and in Alex’s life, we see that some 6% of Americans are diagnosed with a severe mental disability – but more than 20% of the homeless have such a diagnosis. What’s going to happen to him when he’s 40.)

Reading too much of this stuff makes me tired – so tired it hasn’t even occurred to me to ask prospective schools what kind of education he’ll get. I know most workers at residential schools – where Alex will live and it will be many, many days before he can takeabus to come home – can and will do the best they can. I know that by a wide margin these workers give most kids the best education possible and that bad things almost never happen.

At this point in the process, though, I only know this because I hope it.

Take My Autism, Please

 

I made people laugh in school and college. A few times around age 18 I commanded a couple of classrooms like like a standup. It seems to be what people remember about me. “Does your new boss get your humor?” my old friend Jon asked recently. Humor has always been my lubricant.

 

 “You’ve always been funny, Jeffrey,” my late mother said once. “Well not funny, you know, but witty.” Mum’s kind of compliment.

 

My kids are funny. My 13-year-old son Ned is in a stand-up class. )“Can’t imagine where he gets it,” Jon said.) Jill and I sure thought Alex was funny about 10 years ago when Ned stood in our dining room crying and crying. Alex heard his little brother’s wails, walked straight up, looked Ned in the face and hit him on top of the head.

 

Or that time years before that, when Alex still hadn’t said many words and lived in a crib. I was fiddling with his diaper when the tape broke and I muttered “dammit.” Soon, his tiny knuckles gripping the crib railing with excitement, Alex spoke another early word; it rhymed with “spammit.”

 

On our last trip to Cape Cod – what’s shaping up as our last vacation ever as a complete family – the daytime temp one day was 30 degrees chillier than the day before. When the sea air slapped Alex as he dashed onto the beach, he spun around and demanded, “Car? Car!”

 

Witty boy. Though strapped by being only semi-verbal, he comes out with some straight-talking humor. “Tired! Take a nap!” he snapped one bedtime. Once when he wanted saltines and all we had was pretzels and I said, “How about pretzels?” he replied, “How about crackers?”

 

In most of his baby pictures, Alex is smiling around the breathing tubes. “Jeez he’s a happy little guy,” my brother commented.

 

Now almost 16, Alex still laughs a lot – loud, too, about five feet from us in the living room. Laughing and whooping at some “Sesame Street” skit on his iPad before he stomps the floor or plunges to his haunches for a joke only he understands and doesn’t share. His laughter seems unconnected to anything in our world. Maybe I just say that because he’s almost 16 and busting up over Elmo.

 

Autism is a long search for something funny. The Kansas City Star reports on parents of autistic kids doing standup: “Several area parents, coached by local comics, practiced routines about the humorous side of living with autistic kids,” the story reads. One mom’s “boob joke” involves her 11-year-old son, a nearby McDonalds and a woman’s low-cut top. “Except it was more than just a joke. It’s one of the many frustrating, and often humorous, realities parents have to deal with when living with a child ‘on the spectrum’.

 

“The disorder often impairs judgment over what’s socially acceptable.”

 

Hoo yes. Bolting from our apartment comes to mind. Barging into other people’s homes, leading us on a chase through echoing, dusty stairwells. Alex hasn’t done that in ages, of course, not since Super Bowl Sunday last month. Did I mention our last vacation as a family? There’s a humorous side?

 

“People with autism just process the world a little differently,” a therapist told the Star. (The story is at http://www.kansascity.com/2014/02/24/4846885/whats-so-funny-plenty-for-parents.html .) This therapist initiated the idea of parents of the autistic doing standup “then got comedians to help focus their material and hone their delivery.”

 

I’m trying. At Alex’s IEP meeting where everyone introduced themselves – “Hi. I’m (blank) and I’m Alex’s teacher”; “Hi, I’m (blank) and I’m Alex’s physical therapist” – and when my turn came my delivery was fine. “Hi, I’m Jeff Stimpson and I’m Alex’s lawyer.” They all laughed. (When they stopped laughing one rep from the Department of Education looked at me and asked, “Are you really a lawyer?”)

 

“We should start doing the following things with the boys immediately,” I emailed Jill a few months ago. “1. Make the boys wipe up their own spills. No exceptions! 2. Make the boys sweep up their own cookie crumbs. No exceptions! 3. Make the boys take their own dishes into the kitchen after dinner. NO EXCEPTIONS!” If that email isn’t a joke, I don’t know what is.

 

Regarding focused material, “retard” is out in any form or context. These days I try to forget every “drain bamage” joke I ever made.

 

“Oh you’re German!” Basil Fawlty tells visitors to the Towers. “I thought something was wrong with you.”

 

“My own taste in humour has changed since having … a special-needs child,” says the New Zealand mom who writes the blog Autism and Oughtisms (http://autismandoughtisms.wordpress.com/2010/12/26/humorless-and-humorous-autism/). “Jokes about friends acting as if they’re intellectually disabled or have had brain damage used to seem like harmless fun. (Now) it can feel quite insidious coming from someone without personal experience and understanding of what they’re laughing at.

 

“My husband and I regularly make (rather un-repeatable) joking comments to each other, about what we have to put up with each day due to our son’s autism,” she adds. “Chances to laugh while you’re going through the problems are as good as non-existent … and the laughter often seems to carry a sort of desperate exhaustion.”

 

Jill and I prefer resigned irony as we watch Alex sweep somebody else’s stuff off a table or the hutch to make room for precise rows of his plastic jungle animals. “Autism decorates,” says Jill, sweeping cookie crumbs off her couch. Autism makes you hone a lot. I can make Alex laugh but I don’t think he gets my humor. He understands my tone of voice but not what I say. Doesn’t matter. When he squats on the floor, bites his own arm, bolts or rocks the couch until it shakes apart, there’s nothing to laugh at anyway.