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Burned by summer? Read on

Summer…it turns me upside down
Summer, summer, summer
It’s like a merry-go-round.

Just like the Cars sang, the merry-go-round that is the calendar is about to turn to Summer.

School ends next week. It’s even getting warm in my northern Michigan town, finally. I can’t deny it any longer.MerryGoRound

Summer’s tough for many families with a child on the spectrum as the spine of the structure of their lives–the school day—vanishes. Our last one was miserable. Long, unstructured days provoked my son’s easily-aroused anxiety, which sent his behavior spiraling down. Lacking that six-hour school day break, my husband and I were more stressed, to the point where I sometimes fled to the garage to scream obscenities as a release. Frequent disruptions cropped up—for vacations, therapists taking vacations, guests visiting—compounding anxiety and stress and misbehavior. To top it off, we didn’t have air conditioning.

Notice the past tense of that paragraph, though. This summer, I am vowing, will be better. One huge reason: We enter it poised for the payoff that led us to choose a Montessori school for our son two years ago. Next year, he’ll return to the same classroom. No transition will loom over Summer 2013.

In hindsight, we believe anxiety over an ill-suited new teacher contributed significantly to last summer’s trials hell. Well-founded anxiety, as it turned out, since we had to request a new classroom assignment three weeks into the school year. He’s thrived in the second class ever since. An encouraging sign: Christmas break, which I had dreaded, wound up going fairly smoothly.

We’ve also lined up more structure, in the form of an ABA therapist who will work in our home three days a week. Michigan passed autism insurance reform last year, making this more affordable. Clearing all the hoops with insurance meant starting back in November. But we did it.

One more thing. My vow is better. Not perfect. I’m not deluding myself about the reality of the summer merry-go-round. But the garage is still there. We don’t have air conditioning, but we got a ceiling fan. When I feel our world start to spin out of control, I can lift my face to its cooling breeze and remember summer, too, shall pass.

How are you preparing for summer?

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A Road Map for Autism

From the first moment a child is diagnosed with autism, parents find themselves catapulted into a chaotic world of therapies, alternative treatments, and doctor appointments. We are left to fend for ourselves as snake oil salesmen try to take advantage, book authors offer conflicting points of view, and everyone from the family physician to Great Aunt Hilda offer their opinions on our children and our parenting. Sometimes these opinions are informed, and many times they are not. We often exhaust ourselves running through what feels like a rat maze, in search of answers or at least some advice that actually helps. We develop our own opinions, fend off curious strangers in the grocery store, and probably find ourselves engaged, on several occasions, in World War III via internet message boards.


All of this happens because we don’t have definitive proof of anything. What causes autism? What is the best method of treatment? Which therapies work, and which ones are a waste of time and money? What path do we take when there are so many options, none of which have a clear end point? All of these questions remain a mystery. As scientists work to unravel the causes and possible treatments for autism, we parents are scrambling to find our own answers. There is this sense of fear pervading every choice we make: Am I doing enough? Is this the right choice? Is this even working? What if I don’t do it, and I find out later this is the best treatment? What if I miss a crucial window of development?


This may be the most difficult part of raising our children. The fact that we don’t have a clear course of action laid out for us means we are often confused, overwhelmed, and fearful of doing the wrong thing or not enough of the right thing.


On the other hand, it can be a blessing in disguise. It’s a bit like taking a trip without a roadmap. Yes, it can be stressful and we may feel lost at times. But we also end up exploring down side roads we may never have noticed otherwise. We see and experience things off the beaten path, and make discoveries of our own. Along the way we find what works for our children and adopt those strategies. Through trial and error, we also learn what does not work, and we are free to discard those treatments and move on.


In the world of raising children with autism, no two paths are alike. For my family, I found that enrolling my sons in an intensive, autism-only preschool had a huge impact on their development. They learned, from professionals specifically trained in autism interventions, how to communicate well enough to convey their basic needs. They learned how to sit still (mostly), pay attention, and work independently when required. All of these skills served them well when they were later mainstreamed into regular elementary school classrooms. Now that they are capable of mainstreaming in their school environments, they are learning more speech and social skills from their typically-developing peers.


I also moved the family to a tiny mountain town with a small public school system. There are only about 15 to 20 kids in each grade, and my sons are recognized and understood when we are out and about in the community. I found that this lifestyle led to an absence of bullying, and a lot of understanding and inclusion. We also immersed ourselves in the natural beauty of our surroundings, with plenty of hiking, swimming and other outdoor time, which has helped their sensory systems regulate. I didn’t read about this in a book. It was just something I felt, intuitively, that they needed. And it worked.


Other families are taking completely different approaches. They mainstream in preschool, or they don’t mainstream later. They live in bustling cities with access to everything they can imagine. Their children attend huge schools with hundreds, or even thousands, of other kids. Their paths are different, but they are finding what works for them as well.


Maybe there is a lesson we can take from this. The treatments for autism are as diverse as our children, and there is no set formula that will always work for every kid. The most important strategies aren’t found in books or on websites, but are innate qualities we can all embrace in ourselves. Follow your intuition. Listen to your child. When something works, keep doing it even if you feel silly. If it doesn’t work, discard it and move on. Respect your doctor’s opinion, but also realize they don’t have all the answers yet. And whatever you do, don’t worry about what Great Aunt Hilda thinks. The best advocate for your child is you.


So get in the driver’s seat, buckle up, and get ready for an adventure. There is no road map for autism, so you’re going to take some crazy side roads and wacky wrong turns. Sometimes you may find yourself alone on the road, and at other times you may ride in a caravan. You probably won’t take quite the same path as anyone else, but the path you do find will be the right one for your child.



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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 feel scary), 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 twists his lips into a sad rectangle, downturned at the corners, and makes a sound like Snoopy when he’s unhappy. Blaaaah!


Alex (almost 14, PDD-NOS) 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.


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The Flood of Water

I’m sitting there doing something when I being to feel I’ve heard the toilet flush about five times in a row. Then I hear my younger son Ned call, “Alex has flooded the toilet!”

I round the corner off our living room and there’s half an inch shining across the black and white tiles of the bathroom floor. My temper takes a predictable turn when I see the water. I step right into the water with my sneakers. Screw it. Except, to paraphrase Fargo, “He don’t say ‘screw’, if you get what I’m sayin’.”



“Ned, I need your help!”

How come I can’t call on Alex? How come all I can do is yell at him to get the hell out of the bathroom?

“Jeff, I’m coming!” says my wife Jill.

“I’m not talking to you! Ned, bring me the dustpans!”

The only bathroom trouble my 13-year-old son Alex has ever had – aside from aim, which as a guy I can tell you is over-rated – is a glass-eyed fascination with running water. He runs the faucet long enough when brushing his teeth to draw an environmental rebuke from Ned. His companion Daniel says he loves looking over the side at the Staten Island Ferry as the waves wash by; maybe it’s the whitecaps rising and fading, or the rushy sound.

I’m talking to no one as I use the dustpan (“Thank you, Ned! Good man.”) to scoop and dump splash after sort-of brown splash into the tub. The dustpan is flat and the floor is flat; doesn’t that make sense? Besides, months ago Alex, who has autism as if one couldn’t guess, ripped the crap out of the car-washing sponge we bought for these floods.

The flood has something to do with the toilet paper being near the end of its roll. Reports Jill, “I heard Ned telling Alex, ‘Stop using so much toilet paper!’” Sounds about right for my life.

“Ned, bring the Swiffer!”

Ned, who’s 11, helps: He lugs the sopping beach towels – it’s deep winter so who cares if we use them, and we use them to make the bathroom floor stop shining – in a bag to the basement laundry room. We sent him back in half an hour to put them in the dryer. He gets a laundry lesson, so that’s a plus.

We must look at the plusses. Alex has learned a lesson about flushing five times in a row – maybe. Ned has learned a household chore. We get the clean bathroom floor until Alex goes in there again, this time for legit business. Aim remains over-rated.

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My 13-year-old son Alex and I get into the elevator with a neighbor. Perfectly normal thing to do after the end of a perfectly normal day. The door slides shut and the neighbor says, “Five, please” when I ask what floor she wants. Then perfect normalcy ends.

This violates my new rule of avoiding, if I can, elevators with neighbors when I’m riding with Alex. He still presses the buttons for a load of extra floors.

Alex, who has autism, presses three (not our floor) and nine (our floor). “Alex, press five, please.”
Noooo!” he says. “Alex, press five.” “Noooo!

Once, I would’ve felt the neighbor’s eyes on my back. I don’t this time. I try to press five and Alex grabs my hand; my other hand holds a grocery bag. “Alex, press five now.”


I could put down the bag and, suddenly needing both my arms for this 13-year-old, force his hand to the five button. I guess I still feel the eyes for a moment, though, because I don’t force his hand.

We get to three. Alex dashes to the door, in front of the neighbor, and stares out. He curls the fingers of two hands to make his own 3.

Eventually we get to five. I forget how, but I may have pressed the button myself. “Have a good night,” I say to the neighbor. “Take it easy,” she says. “Take it easy,” Alex says.

Alex, walk this way…  Alex, press five, please…  Those times he doesn’t, I grunt like Basil Fawlty in comedic exasperation even as I know that whatever Alex is doing is no passing instant but the way things are and the way they’re going to be. I’m getting plain old pissed at the idea that not every parent has a son who’s going to have to be a grown-up amid the wreckage of our special-needs budgets. Some doctor put it best 14 years ago: “You’re at the mercy of everybody with an opinion.” At that time, I believed he was talking about just Alex’s year in a hospital. Now I think he was talking about the rest of Alex’s life.

What must people must think when they see Alex? I pity the parents. Why do they let him do that? Why don’t they find a home for him somewhere?

He has a home. The opinions we have of him there will do for now.

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