Teenagers with autism need life skills and job training. Life Skills & Life Lessons: Autism Dad 3 is a personal memoir told with humor and grace that looks at the unique challenges facing special-needs children transitioning into young adulthood. This collection of essays not only details a father’s take on raising a special-needs child, but tells the story of a family shaped by the everyday challenges and rewards of raising a child with autism.
* What Causes Autism And Can It Be Prevented?
* Teething Pain Is Only The Beginning
* Autism And The Art Of Toilet Seats
* Help Wanted: Employers With Open Hearts And Minds
* Celebrity Autism Insults Real People Struggling With ASD
* Precocious Pre-Teen And Racy TV Ads Yield Parental Torment
Autism Dad 3: Life Skills and Life Lessons ISBN-13: 978-1983499593 ISBN-10: 1983499595 $10.99 print/$3.99 digital
We create rules as a way to manage our time, personalities, and behaviors. We make rules in order to control our lives and give order to the world around us. Rules let us agree on a common way of acting, of certain expectations being met, and of certain boundaries not being crossed. Rules tell us how to live.
Following rules and finding our place in the world is central to Cynthia Lord’s Rules, a powerful young adult novel about a fifth grade girl, Catherine, and her autistic brother, David. Along the way they befriend a non-verbal, wheelchair-bound boy named Jason, who, despite his physical limitations, helps set Catherine free of her self-imposed and restrictive “rules.” After all, rules are meant to be broken.
Catherine wishes her brother’s autism would simply disappear, that he’d just wake up “normal” one day. But in case that doesn’t happen, she’s compiling a list of rules so “at least he’ll know how the world works, and I won’t have to keep explaining things.”
Catherine gives voice to the siblings of special needs individuals everywhere when she notes:
“Everyone expects a tiny bit from him and a huge lot from me.”
Later, Catherine talks honestly with her father.
“I have to matter, too. As much as work and your garden, and even as much as David. I need you, too.”
Catherine ponders the nature of her brother’s disability. As the father of a son with autism I found her insights packed an emotional wallop. (Note: Cynthia Lord is the mother of boy with autism.)
“How can his outside look so normal and his inside be so broken? Like an apple, red perfect on the outside, but mushy brown at the first bite.”
Catherine struggles with being both embarrassed by her brother and protective of him in equal measure. She hates when people treat her brother “like he’s invisible. It makes me mad, because it’s mean and it makes me invisible, too.”
Two of Catherine’s most simple rules are the most profound.
There are flaws in all of us—not just those with special needs.
We all try to do the best we can to fit in, but things don’t always end up the way we intend.
There are quite a few laughs here, and a few weepy emotional moments, too. Some of the most profound highlight the differences in Catherine and David’s mental capacities. At one point both kids get a chance to make a wish. Catherine says:
I wish everyone had the same chances. Because it stinks a big one that they don’t. What about you?
David wishes for grape soda.
Cynthia Lord plays it straight in Rules, and doesn’t overdo it on the sentimentality. The result is an engaging read filled with light and love. A couple of Lord’s rules are bound to stick with you after the novel’s close:
You can’t blame him. For the first 12 years of his life, Ido Kedar was stuck in an uncooperative body, unable to communicate. Even now, as a teenager, his communication is limited to pointing to letters on a keyboard.
But don’t assume his lack of speech equals a lack of intelligence. As Kedar points out:
“The erroneous theory is this: to speak is to understand. Tell that to Stephen Hawking.”
Ido lives in “autismland,” as he calls it, a scary place fraught with communication problems, sensory issues, and severe anxiety. Kedar’s book, Ido in Autismland: Climbing Out of Autism’s Silent Prison, is a firsthand account of what it’s like trapped at the “low functioning” end of the autistic spectrum. This collection of essays — published in 2012 when Kedar was 16 years old — reveal the author’s beautiful mind, poet’s soul, and warrior heart.
Kedar is a person — a mind, a soul — fighting to be heard. And, once he finds his voice, he doesn’t mince words.
“The “experts” mostly never get it right. They assume we are some autistic, retarded stim-machine, not a trapped, thinking person who has a neurological illness. … Do I sound angry? Well, I am. It’s time autistic people told the experts that they have made mistakes.”
Kedar breaks down many of autism’s odd behaviors. Why are autistic kids so attracted to water? “Because in the water I can feel my whole body,” Kedar explains. He also explains the motivation behind the repetitive pleasure/torture of self stimulatory behaviors.
“In my Health class we are learning about drug abuse and alcoholism. I can’t help but see a similarity in autistic stims… Stims are the drug of the trapped.”
Kedar is both baffled and troubled by the “flight impulse” that sometimes overcomes him. It’s a common autistic trait — in my son’s school they call it “elopement.” Sadly, it’s the same impulse that recently got autistic student Avonte Oquendo killed.
“Traffic is visually stimulating. It may invite some kids to move toward it. I can’t explain that one, but I have felt the impulse to bolt suddenly… It’s not due to ignorance or idiocy. It is the impulses and too weak a body control to fight them off. It doesn’t matter why. We still need supervision to be safe.”
When Kedar writes about the frustration of having a body that won’t respond to his will, he sounds like a philosopher.
“I’m stuck like a stump and my brain is thinking of what it wants my body to do. It ends there. Thinking, not responding. In other words, what good is my free will if I am like a thinking man in a straight jacket?”
Later in the same passage he shows courage beyond words.
“I fight the temptation to despair because I really want to free myself. It’s my job to free my soul. Hopefully one day my body will be free too.”
Ido writes with a wisdom and maturity well beyond his years.
“I’m not a brave person. I am scared of being in front of cameras or interviewers. I have decided to speak out anyway. It’s not my goal to be well known. I like being anonymous, but I am determined to say what has to be said. It’s not always our choice if we are brave. Sometimes it’s important to do, even if you’re scared.”
Like a Zen master who spends decades alone in contemplative silence, Kedar has achieved a kind of enlightenment. It’s no pity party for Kedar. He’s got himself together better than most.
“I think a lot of it has to do with expectations. If you think life owes you something, you can’t appreciate what you have … The way to appreciate your good fortune is to notice your blessings … I see that to hate your life dooms you to a wretched one, even if the life you have is hard. The truth is I don’t need to be normal to make my life meaningful. I need to have freedom to think, loving friends and family, and a recognition that no life is perfect. In spite of an illness I wish I didn’t have, I actually have it better than many people.”
Kedar’s “secret to happiness” is “stopping self pity,” and he reveals the heart and soul of a true writer when he discusses the healing power of words.
“As I write, I see what I should work on. I will continue to write my journey for myself because now I see that writing heals me.”
The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism (2007) by Naoki Higashida
KA Yoshida (translator) David Mitchell (translator)
The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism by Naoki Higashida is like a Rosetta Stone, a secret decoder ring for autism’s many mysteries.
Author Naoki Higashida is a non-verbal boy with autism living in Japan. He’s able to write using a letter board, and this book of essays was published in 2006 when Higashida was 13 years old.
While Higashida doesn’t represent everyone on the autistic spectrum, his book certainly helps explain many autistic behaviors from the inside out. Higashida answers questions on a variety of topics, like, “Why do you flap your hands?” and, “Why do you like to jump?”
Higashida’s answers show amazing insight into the autistic mind, detailing a unique system for filing memories, as well as a perpetual struggle with sensory input, and the concept of linear time.
The mental gymnastics needed to overcome autism’s obstacles are tremendous, and sometimes brilliant. But it’s exhausting being inside Higashida’s head — you can only imagine how he must feel.
A quest for consistency — for something true and unchanging — is behind many autistic behaviors, as seen in Higashida’s response to the question, “Why do you like to spin things?”
“Watching spinning things fills us with a sort of everlasting bliss — for the time we sit watching them, they rotate with perfect regularity. Whatever object we spin, this is always true. Unchanging things are comforting, and there’s something beautiful about that.”
Many of Higashida’s introspective insights are universal, and written with a poet’s hand.
“Invisible things like human relationships and ambiguous expressions … these are difficult for us people with autism to get our head around.”
Invisible things are hard for all of us to grasp. Thoughts, emotions, memories, and faith; germs, virus, and disease. Our lives are ruled by Invisibles. They get us all in the end.
Asked what causes his panic attacks and meltdowns, Higashida’s response is perceptive and poignant:
“Stuck here inside these unresponsive bodies of ours, with feelings we can’t properly express, it’s always a struggle just to survive. And it’s this feeling of helplessness that sometimes drives us half crazy, and brings on a panic attack or a meltdown.”
Higashida’s apologetic tone resonates throughout this collection. He longs to connect, but he knows his strange behavior makes others uncomfortable, and it breaks his heart. It will break yours, too.
But The Reason I Jump is a double-shot of hope for parents of children with autism, especially those of us raising non-verbal / limited-speech kids. This book is proof of what we’ve known all along — our kids are thinking / feeling / loving people trapped inside uncooperative bodies. They wear their skin like an ill-fitting suit, constantly tripping on the hems, and getting caught up in the sleeves whenever they reach for something. Sensory Integration Disorder and the strange wiring of the autistic brain makes connecting with the outside world a challenge for our kids.
Higashida says the autistic mind focuses on details (flashing lights, a ladder, hoses, black tires, loud siren); while a typical mind will immediate recognize an object (a fire truck). Higashida sees a benefit in this reverse-engineered view of the world.
“Every single thing has its own unique beauty. People with autism get to cherish this beauty, as if it’s a kind of blessing given to us.”
Connect with a person with autism — see the world through their eyes — and you’ll be blessed, too.
My son’s name is Rocco, but Conan the Destroyer would be more apt. The boy has an appetite for destruction, and he’s always hungry.
Rocco’s autism is a factor in his destructive behavior. He often uses items in inappropriate ways, like raiding my wallet and using the credit cards in an origami display (the plastic card in the cable box folds nicely, too!) or making a concoction of cinnamon and onion powder over the toaster (which makes for funky waffles.) Autism accounts for some of these behaviors, but I think even if Rocco were a typical kid he’d have a destructive streak. He likes to see how things are put together…and how they come apart.
Electronics are a Rocco favorite. He toasted a not-so-Toughbook and destroyed several iPods. Wireless phones are a constant terror target. I knew trouble was brewing the afternoon I called my wife’s phone and Rocco answered. He was laughing wildly and I heard water running in the background.
“Buddy?” I said. “Hey, Roc! Give Mommy the phone.”
He laughed and hung up. I called back but got no answer. I sent a text.
‘Roc’s got your phone. Not a toy!’
No reply…until I got home that night.
“Bad news,” my wife said, shortly after I walked through the front door. “Want it now?”
I didn’t, but my six-year-old daughter spilled the beans anyway.
“Rocco took Mommy’s phone in the shower,” she said. “Now it doesn’t work.”
This was bad news. Mom’s phone was a re-activated older model, because her new phone broke under “unknown circumstances.” The old flip phone had a cracked front screen, surrounded by mysterious teeth marks, but otherwise worked fine.
Soggy, No Service
Now the phone was a soggy mess, the tiny space behind the screen filled with water, a lifeless aquarium.
“Did you put it in rice?” I asked. This wasn’t our first wireless phone to take a swim. We’d rescued submersed phones before by tossing them in a bag of rice, which absorbs the moisture.
“We don’t have any rice.”
What now? A hair dryer? That would be loud, tedious work. I am a self-proclaimed “Daddy Who Fixes Things,” and I try hard to live up to the title. But this was a tough fix.
“Maybe we could put it in the oven, bake it at, say, 100 degrees?” I suggested.
It was worth a try. We removed the battery and baked the phone for a few hours. We tried the phone later and the screen powered up, misted with internal condensation. The buttons still weren’t working, so we turned off the oven and left the phone in there overnight.
My wife tried it the next morning. The phone powered up and she ran through the menus, gave it a test run.
“Wow. Everything works,” she smiled. “You’re my hero.”
I felt like one, too. It’s not every man who can resurrect a drowned cell phone from a watery grave. Only a Daddy Who Fixes Things.
“There’s a new text message,” my wife said, clicking it open. “Yes, Rocco’s got my phone…no, it’s not a toy…”
Originally published in Wayne TODAY Newspapers, September 2010.
In light of my insensitive comments about Lou Ferrigno‘s disabilities, I’ve decided to run this article which shows how my opinions (and sense of humor) have changed. Oh, and if parents and educators are looking for guidance on preventing LGBTQ cyberbullying, here is a guide.
Tracy Morgan is a professional comedian. He’s one of the stars of NBC’s “30 Rock,” and did eight seasons on Saturday Night Live. He says funny things, and, like any professional comic, sometimes he offends people with his humor.
But did Tracy Morgan go too far last month when he targeted homosexuals during his act at a comedy club in Nashville?
I don’t know, because I haven’t seen or heard Tracy Morgan’s act, nor have I read a transcript.
And neither have you.
No recording of Morgan’s act exists. The outrage over his act is based on one gay blogger, Kevin Rogers, who wrote about Morgan’s act on his Facebook page, and the story spread from there. Since Morgan issued a quick apology, you assume he’s guilty as charged.
“Say you’re really, really, really sorry!”
But Morgan’s apology wasn’t good enough. His fellow co-stars, Tina Fey and Chris Rock tossed him under the homophobic bus, and now Tracy Morgan has become a poster boy for homosexual tolerance. The Gay and Lesbian Alliance Against Defamation (GLAAD) has taken Tracy Morgan hostage, and now he’s on an “apology tour,” meeting with leaders of the gay/lesbian/transgendered community for more public mea culpas and photo ops.
[Speaking of which, is it off limits to poke fun at the transgendered community, too? Better outlaw all those classic comedy clips of men in drag, everyone from Milton Berle to Benny Hill to Eddie Murphy.]
The trouble here is one of sincerity. Tracy Morgan doesn’t sound sincerely sorry. I’m sure Tracy Morgan doesn’t actually endorse violence against homosexuals, and he’s sorry for implying so. But I think his bigger concern is losing his “30 Rock” paycheck. He’s a comedian telling jokes on a comedy club stage…he shouldn’t have to worry about offending anyone.
I question the sincerity of GLAAD, too. I don’t know how much the leaders of the organization are genuinely upset by Morgan’s comments (which, again, were actually heard by very few people) and how much GLAAD chose to seize this opportunity as a “teaching moment,” making Morgan an ersatz spokesman for homosexual tolerance and understanding. It’s a noble cause, but I’m not sure making Tracy Morgan walk the plank over a dumb joke is the right way to promote it.
Comedy 101 — Somebody’s Gonna Get Hurt
The first rule of comedy — of life, really — is keep your sense of humor, and don’t take yourself too seriously. If you’re going to laugh at others, you’d better learn to laugh at yourself first. All jokes are funny, until they hit close to home. If gay humor doesn’t offend you, surely another joke will: ethnic humor, jokes about the elderly, or maybe a gag about a “dumb blonde”.
As the father of an autistic son, I no longer find humor in goofing on developmentally disabled individuals (“Timmy!”). I cringe every time I hear someone describe a frustrating or ridiculous situation as “retarded.” (Probably the same way a homosexual feels when they hear something wimpy or ineffectual described as “gay.”) If the person you’re joking with doesn’t have the mental capacity to understand your humor, then you’re not being funny. You’re being cruel.
And, as a guy who has struggled with “weight issues” since childhood, enough already with the fat jokes! We’re not all lazy slobs! Some of us are well-groomed and hard workers! Look at Governor Chris Christie! We’re big boned! We have slow metabolisms!
Ah, it’s a losing battle, and maybe that’s for the best in the long run. Comedy demands basic building blocks, seeds sown early in life, and when I see my kids enjoying the rotund hero of Kung Fu Panda or dumb-but-lovable Patrick on Spongebob Squarepants, I accept that jokes about the obese and the addle-brained will survive another generation.