"Is it okay if my knee touched my sandwich and then I ate it?
Is it okay if I touch my book then I touch my face?
Is it okay if I dropped a crumb on my shirt? An ant won't crawl up my shirt will he?
Is it okay if I touch the couch then touch my popcorn then I eat it?
Is it okay if my knuckle touched your food?
Is it okay if I got some salt on the computer?
Is it okay if I wipe this eye booger on you?
Is it okay if I dropped a pretzel on the couch?  Can I eat it?
Is it okay if I get pee on my hand and pull up my pants before I wash my hands?  I won't get it in my mouth, will I?
Is it okay if I ate and then I touched a wall?
Is it okay if this Cheez-It fell on the blanket and then I ate it?
Can I wipe my hands on my pants? I won't get grease on them will I?
This isn't poison is it? (10x a day minimum on this one)
Is it okay if I don't say thank you or hello? What will happen?"

These and similar questions....all day...every day these days and for quite a while now. Funny? Yes? Sometimes annoying when they've been coming at us rapid fire? You bet.

Mom & Dad

The end of the second grade school year is here - 20 days to be exact. Curtis has been up against some large challenges, big obstacles and some heavy emotions over the last nine months. He has taken on the work load of a 3rd/4th grader in all areas, he has blossomed socially in the classroom and in small groups and he has navigated a different hallway, a different mainstream classroom and a different teacher like a champ. To honor all of these accomplishments I have created a chain of "rewards" that Curtis gets to tap into every morning once he hangs up his bag. Each chain link has a "Congratulations - you have worked hard this year, you get to  ____________!" 

The rewards are mostly centered around struggles he has gone through (and successfully made it out on the other side) all school year. For example, he usually puts up a fight in doing his morning work on Monday morning after the weekend. So, one of the rewards allows him to skip it and "take a chill pill in my chair", on another day he might get to "skip" music class - another year long struggle for Curtis. Finishing some "useless" (according to Curtis) classwork has also caused a lot of stress for him. One of the rewards coming his way this week is to go through his math journal and rip out one page and putting it in the trash - something he has been itching to do all year long. I lined up the chain links with certain rewards on certain days knowing where he is usually struggling and making the last chunk of the school year smooth and filled with joy and pride - as it should be. We all deserve to be rewarded for making big leaps in life. Curtis has the next 19 school days filled with rewards for navigating second grade like a warrior and coming out stronger on the other side.

Caron, 1:1 School Support

Chow Down 

“Alex, dinner!” might sound like an echo across normal backyards the land over, except in our house it’s followed, every evening, by “Here are your hot dogs, Alex.” Hot dogs sliced by the width, about a half-inch a slice, and they have to be Hebrew Nationals because if you use any other brand you’re not fooling anybody.

Compared with the rest of his development, Alex’s diet is arrested (I’d say “retarded” but don’t for reasons that are also starting to freeze my bones), and it’s progressed little in several months. Vitamins and stuff like Benefibre help, but regarding food we’re still parked at La Crème pink yogurt (“pink” is not an official flavor; raspberry or strawberry, doesn’t seem to matter which, but try the pale vanilla or the orange-y peach and you’re not fooling anybody). Utz Dark Special pretzels, plain cracker flavor Goldfish. Chocolate chip cookies, with Chips Ahoy a favorite, though homemade from the mix will do. Just make them crunchy with no soft-and-chewy crap.

“Alex, try these kale chips!”

Kale has a rep worse than that of hot dogs that aren’t Hebrew Nationals, but recently my wife Jill found this recipe where you chop kale, spread it on a cookie sheet with olive oil, salt it like mad and broil it for 20 minutes. You wouldn’t believe how much the result tastes like junk food. “Alex, here-” I try our time-honored method of touching the tip of his finger to the stuff we want him to eat and then touching the fingertip to his lips and tongue. The salt! The oil! Who could resist? Alex (13, PDD-NOS, on the spectrum like a train is on the tracks) twists his lips into a sad rectangle, downturned at the corners, and makes a sound like Snoopy when he’s unhappy. Blaaaach!

Alex used to eat the cheese off a slice of pizza, that sausage-substance patty from inside the McDonald’s breakfast biscuit, maybe a few berries mashed in his teeth and smeared across his lips. “Jill,” I ask, “what can you tell me about Alex and eating these days?”

“I dunno,” she says. “It’s just so difficult. I did get him to drink chicken broth the other night, but I didn’t strain it enough and he kind of gagged on a bit of vegetable...”

It isn’t a matter of what but also how: We want Alex at the dinner table. Ned sets placemats for him, but Alex just snatches his bowl of Hebrew Nationals and heads back to the couch to eat them over his iPad. I know we should drag him back, take away the food, starve him until he eats food in the place where we, his family members with the supposedly whole brains, know it needs to be eaten. People have given us this advice, I notice that the people who give such advice often don’t have autistic children themselves. We let him eat his hot dogs at the couch over the iPad for yet another night, but I know we’re just fooling ourselves.


Jeff Stimpson lives in New York with his wife and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon) and has a blog about his family at jeffslife.tripod.com/alextheboy. He contributes to various sites and publications on special-needs parenting, such as Autism-Asperger’s Digest, Autism Spectrum News, the Autism Society news blog, and An Anthology of Disability Literature (available on Amazon). He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”

People who just meet Curtis often ask, "So what are his limitations?" "He seems like a normal kid." The answer is as complicated as explaining his talents. There are issues with communication of course, social cues, etc.  But for all Curt's communication problems, he typically finds a way to express his feelings.

Yesterday saw two autism related articles in the local paper.  The first concerned Temple Grandin's visit to the Portland Campus of the University of Southern Maine this past Sunday while the other is from the Associated Press and addresses difficulties for those on the spectrum in finding gainful employment and continuing with education beyond high school. The two articles are closely intertwined as they each deal with life quality for individuals on the spectrum.

I didn't get a chance to see Temple at USM though I wish I had. I She is a suitable hero in the autistic community for a variety of reasons but especially for her professional achievements. In addition to revolutionizing cattle chutes to make them more humane and efficient, she is also an animal science professor at Colorado State University. As a parent of an autistic child it's nice to envision possible career paths for Curtis and professor makes a lot of sense, whereas say construction or working in a restaurant does not because of the amount of loud noises. There are some great Temple Grandin quotes in the article but my favorite is "Just do things with them, engage them, because doing nothing is the worst thing you can do," she said. Couldn't agree with that point any more.

The second article out of Chicago delves into the difficulties for those on the autism spectrum to get paying jobs or college degrees. According to the article, one in three individuals on the spectrum have no paid job experience or secondary training seven years after graduating high school and that number is about half for people on the spectrum just two years out of school. One mother of a young adult on the spectrum points out the difficulties her son has understanding social cues and body language, inhibiting her sons ability to function in the workplace. These are similar issues to what Laura and I have discussed when looking down the road at what employment could look like when Curtis reaches that point.

"Government data suggests that 1 in 88 U.S. kids have autism and there's evidence that the rate is rising.

Within the next 10 years, more than 500,000 kids with autism will reach adulthood, said Peter Bell, vice president for programs and services at Autism Speaks, an advocacy group that helped pay for the study."

While it's impossible to know how much Curtis will develop over the next ten years, it's important to remain mindful of potential employment hangups. For instance, social cues and body language may always discourage him from certain roles, but they aren't likely to deter him from learning computers, engineering, or being an artist (the Curt dream). I don't see why he couldn't repair cars, become a statistician, or fix bikes. It seems the idea is to be cognizant of strengths and weaknesses just like any of us. Even in the face of sobering statistics, it's still seems likely to me that Curtis will work and probably enjoy what he does quite a bit. We'll surely work towards that goal.

The funny thing to me is that Curtis, though still just 8 yrs old, has no real interest in money other than to observe its importance to everyone else. Sure he collects coins and has amassed several hundred dollars worth, but he has no interest in spending it. He has almost no concept of what anything costs unless he has bought it before. He knows a bag of Lay's Sour Cream and Onion chips is $1.09 but the car that I drove there might cost $100 or $1 million depending on when you ask him. However even if money is never important to him, he's already shown us that he's got a lot of drive and pride. I feel confident he'll ride those qualities all the way to a degree as well as employment or anything else he puts his visual mind too.

Greg, Dad

Curt's cousin Jayden turned nine today and Curtis had ages on the brain. He made a giant nine for Jayden in the form of a road, followed by his name and age and a few more after that. He also wrote down his school's character traits which he memorized some time ago.

Despite having autism, Curtis is performing at or above grade level in all academic areas of the classroom. In April, his performance was compared to a normal distribution of scores from peers his age with the Wechsler Individual Achievement Test-Third Edition.

*Curtis receives individualized adult assistance across the curriculum throughout the day. Academically, Curtis is strong but needs a lot of support and front loading to be able to participate in groups within the classroom. He did these tests on his own, in increments of 35 minutes, with an examiner.

Individual Achievement Test Results

1.) Curtis' strengths are in the areas of decoding and math. He correctly answered questions around the calendar, number order, patterns, counting and comparisons. Curtis was able to answer questions about graphs and he correctly multiplied 20 facts in 60 seconds in a subtest not normed for the second grade.

2.) Scores above average for pseudoword decoding and math. High average range for reading, oral reading fluency, spelling, numerical operations, and math fluency- subtraction.

Above Average Testing Areas:

Preudoword Decoding
Total Reading
Basic Reading
Mathematics
Math Problem Solving
Word Reading
Oral Reading Fluency
Spelling

Average Testing Areas:
Reading Comprehension and Fluency
Written Expression
Math Fluency
Early Reading Skills
Reading Comprehension
Alphabet Writing Fluency
Sentence Composition
Math Fluency- Addition


Greg, Dad