Photo courtesy of kyz (flickr.com)

I hate to think what these things have cost, and as he has clearly filched them from some recreation program, I’ve tried sticking them in his bag with a note that says Sorry! Alex didn’t mean to take these! (Though he most certainly did.) But they don’t always take them back…

I wanted to play Devil’s Advocate and stand up for the insurance company on this one, but I just can’t. Here’s the issue:

“A tactic used by insurance companies to deny expensive behavioral therapy to autistic children has been deemed illegal by a Los Angeles judge. In a preliminary ruling, Los Angeles County Superior Court Judge James C. Chalfant found that Kaiser Permanente’s refusal to pay for a child’s autism treatment because the provider was not licensed by the state runs counter to California’s Mental Health Parity Act. That act requires insurers to cover care for mental and behavioral problems at the same levels they do for physical illnesses.”

The treatment is ABA (applied behavior analysis) therapy, and many, if not most, providers are not licensed at the state level, meaning that the insurance companies would never have to cover treatment. As parents desperate for treatments and therapies for our kids, we need more support from insurance, not less. ABA is hardly an untested or experimental treatment, and I can’t defend a company claiming that it’s only trying to “protect” patients from unlicensed practitioners when it’s clear that the refusal to pay is based on profit.

Post from: Blisstree

Mini-Theft of Multi-Cultural Figurines

“No!” Alex replied, shaking his head for emphasis.

Photo courtesy of longhorndave (flickr.com)

So much for going in with an enthusiastic beginning. Still, we thought it could be fun for Alex to do a little fitness and sports-type stuff in a supportive atmosphere. (Note: his new school is big on this, and we get occasional e-mails from the unit teacher saying how much he likes the gym routines and the therapy balls.)

Unfortunately this event took place right near a playground Alex is very fond of, with a gigantic marble slide. As soon as we got there, Alex started asking to go in the playground and go on the slide, and we spent a fair amount of energy trying to persuade him to take place in some fun easy obstacle course stuff (touch the traffic cones, hop like a frog, walk like a bear).

Afterwards we rewarded him with a new polar bear from the store that has little plastic animals, and that was our fitness day. Given our current employment (or unemployment) status, we’re not really in the market for an afterschool program we’d have to  pay for, for Alex, but we both liked Eric Chessen very much and think his fitness program for kids with autism is well-designed. If I have one regret about Alex’s early childhood (and actually I have several) it’s that we didn’t play ball with him. I believe that the back-and-forth of simple ball-playing is a form of communication, and kids with autism in particular might spark something that leads to verbal communication.

•      •      •

MJ says he is the father of “three beautiful daughters who unfortunately have to struggle with autism.” He is also the driving force behind Autism Jabberwocky, a terrific blog that asks tough questions. (Disclosure: MJ wrote about us on his blog, and we were really glad —and he also left a comment or two here on Autismvox.com at a time when we were happy to get a friendly comment.)

Things I love about Autism Jabberwocky: rolling list of recent autism blog topics on the lefthand side. It’s nice to see our name there, of course, but it also reminds us to check in with other interesting blogs. Very clear blog archive by month, listing the number of posts. I always learn something when I read Autism Jabberwocky. Today it’s a good discussion about Dr. Thomas Insel, director of the National Institute of Mental Health and chair of the Interagency Autism Coordinating Committee. As usual, MJ has pointed out something no one else has really considered, and I doubt I myself would have noticed, as tired and fogged and bogged down by Other Stuff as I so often am. Glad he’s around with his sharp eye and keen observations.

Post from: Blisstree

Hop Like a Frog, Walk Like a Bear

Two years ago the Sail was canceled because of a gusty wind, so last year we were happy and excited to be going. Today we buy our pumpkins; we’ll carve late in the afternoon when Alex gets home from his recreation program and Ned from sib shop.

Every year Alex seems to look forward to Halloween, and it’s satisfying to see him moving in step with everyone else. Autism seems so often like a private celebration. We don’t know what he’s laughing at, or why. We can’t make him eat the way we do, although he’s gotten much better about tasting things (and finding, amazingly, that he likes some of them). My sister bought me Little Miss Matched socks last year, and Alex seized on them with delight. They fit him, so I let him wear them, but it started an unshakable belief for him that socks must never match.

This time of year seems so filled with things that people do to bind together in the darkening days, that autism in the family can weigh more heavily. Alex is not looking forward to pumpkin pie or post-Thanksgiving shopping (though he will be happy to see cousins and a foil-wrapped chocolate turkey). There’s no Hanukkah or Christmas countdown for him, though he’s mighty happy to see those wrapped gifts. But if he’s anticipating the coming season, we don’t know. And he’s not telling.

I’m glad to know that there is a holiday he seems to know is coming, to be celebrated with miniature pumpkins and “It’s the Great Pumpkin, Charlie Brown.” He doesn’t seem to cue in on trick-or-treating but he’ll be thrilled to get some chocolate, and he’ll enjoy, as we all do, the excitement and thrill of being up late, and walking through the dark night, when who knows what will happen?

Post from: Blisstree

The Dark Night

Photo courtesy of Just SallyRye (flickr.com)

felt really warm. Take, for instance, Sunday afternoon, when Jeff and Alex went out to run errands and I stayed home to potter around the house and feel glad I was inside a warm apartment.

When they came in, Alex looked chilly and a little unhappy, and I had the inspired idea of making cocoa. It seemed like a natural. He drinks chocolate milk. In fact, he loves chocolate so much he now enjoys chocolate ice cream. What could be better than cocoa? Ned loves cocoa. Why shouldn’t Alex? I made some, and I made sure it wasn’t too hot. I had him warm his cold hands on the warm mug. He seemed to like but not love doing that. Why? Doesn’t a nice warm mug feel wonderful on cold hands?

He wouldn’t taste. I told him it was chocolate milk, but a little warm. Finally Jeff reminded me that I could stick Alex’s own finger in it and he’d automatically stick it in his mouth to get rid of the stickiness or, as Jeff thinks, to control how much or how little of the poison he ingests. The first taste went well. Brought a brief flicker of smile. I stuck his finger in again, twice more, and soon Alex was gulping from the whole cup and laughing, possibly at how good a warm chocolatey drink tastes on a cold afternoon.

The one thing he would not do was slow down, savor it, incorporate it into some drawn-out moments of his life the way Ned does, as if he is painting a scene: This is me, drinking cocoa and savoring the moment. At first I think that it’s as if Alex can’t remember the past or envision the future, but then I remember how he constantly rewinds videotapes. So maybe the cocoa is just so delicious he can’t keep from gulping it all at once.

Post from: Blisstree

Cuckoo for Cocoa

Photo courtesy of callme_crochet (flickr.com)

The Baltimore area also has restaurants and churches showing an awareness and sensitivity to the autistic population with special services and specially trained staff. In New York City I’m not aware of any particular initiatives that would accommodate my son or my family, but we do frequent restaurants that seem sensitive, like Manna’s Soul Food Restaurant and Salad Bar, a mini-chain with locations in Manhattan and Brooklyn. As we’ve tried to keep Alex from darting into the kitchen or served him saltines that we brought him from outside, staffers at Manna’s have always been cheerful and friendly. The roast turkey and stuffing can’t be beat.

Another place that’s downright welcoming to Alex is one branch of the Famous Famiglia Pizza chain. Jeff has been taking both boys there for about four years and lately hits the place with just Alex to get him out of the house so Ned can have some quiet for his tutoring late on Wednesday afternoons. Alex can eat — with a fork! — the cheese from two slices now. But more to the point, the guys behind the counter always say hi to Jeff and the kids, and always ask how they’re doing. Last Wednesday, the place was crowded, as usual, and the only seat was a small table hidden in the back. Jeff left Alex there to go order up front, realizing full well that Alex might well bolt for the bathroom or even behind the counter toward the ovens. “Take a seat,” they said, “we’ll bring it over!” And they did. Odds of course are now that somebody behind that counter knows some kid on the spectrum — and understands. Who cares if they were secretly thinking how they wouldn’t want Alex careening around their crowded eatery. It translated into a nice moment, and a place we’ll return to over and over despite there being a pizza joint on almost every corner of Manhattan.

Post from: Blisstree

Going Out Gets Easier

Blair’s writing is honest and beautiful. He took his son to see Amma, the hugging saint. He admits he doesn’t talk to his son much. Perhaps, he says, he “asked” for autism by asking God for a challenge when he was 10. And maybe I too feel like I asked for autism by wanting so desperately, when I was young, not to be the same as everyone else. To live an ordinary life like millions of other people would be, I thought, a kind of death.

Photo courtesy of Wonderlane (flickr.com)

Living with autism — the kind of autism that makes communication difficult or impossible — is alien and alienating.  ”We live on the moon!” a new father said to me once. He had two daughters, one around 2, the other just a few months. The parents were sleep-deprived and enjoying the mixed pleasures of living with mostly nonverbal beings. That’s a little what it’s like.

When we thought of having children, though, I wanted the ordinary world — playdates, rock collections — but I got the world of autism, with its focus on startling, surprising things, its use of gesture, sound, emotion standing in for verbal communication.

Amma, Mongolian horse trips, deliberate parasitic infestation. It makes me think the only way to approach autism is to dive in, headfirst, and do something that makes so little sense, on the surface, that it actually makes sense. Like the title of Paul Collins’ book, “Not Even Wrong,” autism places some of us so completely outside anyone else’s lived, human experience we may as well be on the moon. In which case, why not go on an extended trip to Mongolia, or visit the ecstatic, all-hugging Amma?

Perhaps this is the secret of your life with autism: that you will experience things, good and bad, that no one else ever imagines. Good and bad. Only you, and your little family, sitting at a dinner table on another planet.

•      •      •

This Sunday we’re trying something new: “Learn to teach Sports and Fitness to your child with special needs” with Eric Chessen. Sunday, Oct. 18, 2-4 p.m. in Central Park, 5th Ave. at 67th St. The National Autism Association (New York Metro Chapter) is the sponsoring organization. Though Alex doesn’t seem that attracted to sports, he has been interested in baseball and I think some kind of physical sport would be a focusing activity for him. I hope there’s a sport or aspect of fitness that touches him.

Post from: Blisstree

Making Waves

Since we’ve been forcing Alex to taste things at home, it wasn’t that hard to get him to try some crispy dumpling skin — and he liked it! He ate quite a few pieces. We moved onto an order of fried rice (diced pork not a hit) and and chicken with broccoli (sliced chicken fairly successful),  chicken lo mein (sliced chicken a bigger hit). Since Alex once — once — ate spaghetti at home, I decided to try the noodles. “Watch!” I said. “Twirl! Twirl!” He liked the twirling. I twirled a few strands onto a fork and handed it to him. He ate it — and willingly ate a few more bites. A very successful meal.

Photo courtesy of fab4chiky (flickr.com)

At home, Alex is eating chocolate ice cream with stuff in it! This is exciting, because we keep buying something called Chocolate Moose Tracks that has swirls and bits and chocolate pieces in it, and it’s great that we are all eating the same thing.

•      •      •

Post from: Blisstree

It Took a Village

Alex has been jumping up and down, somewhat jerkily, when Elmo has dance numbers. I noticed this a few weeks ago on “Elmo’s Wild Wild West” when Mr. Noodle and his brother and sister are line-dancing. Alex has attempted his version — took me awhile to figure out he was dancing along. I noticed today that Alex has been rewinding to the dance parts of all his Elmo videos, and this evening he did something he’s never done before. He asked me to dance. So we danced together. We did the Chicken Dance, and Alex definitely got the shaking and the clapping parts, which is awesome.

We’re not “American Idol” fans, but I’m thinking we should start watching “So You Think You Can Dance.” If Alex liked it, we could watch TV as a family, which I admit is not a lifelong dream of mine but would nevertheless be one of those nice things that seems to elude us. I wanted us to be able to eat in coffee shops and Chinese restaurants together and we can. I wanted us to be able to attend live performances, and we can do that too (as long as it’s the circus). So I think that my mini goal of watching a half-hour TV show together is not outside Alex’s scope.

•      •      •

Image courtesy Dover Press

Excellent step-by-step instructions for trick-or-treat practice are available on the website of the Birchtree Center in Portsmouth, N.H., an agency whose mission is to improve the lives of children and families living with autism through therapy, special ed and nurturing relationships. Each year, they offer an actual trick-or-treat practice session (what a great idea!).

Post from: Blisstree

Peculiar Dancing Boy

Photo/Jill Cornfield

because we’ve all become Halloween-mad, or because of the kids or because autism makes it a bit of a project.  Whatever the reason, I’m glad to find that there are literally thousands of tips online for surviving and even enjoying the day (or week or month).

Post from: Blisstree

Halloween is the New Christmas

Photo/Jill Cornfield

Halloween, but mine don’t. Ned occasionally pipes up with a costume idea in July or wonders in September if it’s almost here, but he doesn’t stay on message for too long. And Alex, of course, ignores the whole thing until it’s time to dress up.

It’s a good thing we make our own costumes in this family, because I don’t think Alex (a boy who refuses to wear any trousers but khakis these days, who for about three years would wear any t-shirt as long as it was black) would be willing to put on some strange garment made of unfamiliar fabric. Our most successful costume was the year of the cowboy. Ned had become devoted to “Toy Story,” so a Woody costume was a natural. I liked it, because he looked so cute in jeans and a yellow plaid shirt that we had anyway. I made the vest out of white and black felt. Then we realized Alex could easily be a cowboy, too. (He was willing to wear jeans back then.) We even had a black vest to glue white patches onto — and Alex was willing to wear it.

For a few years Alex agreed to wear regular clothes with a bit of fiddling. He was a fireman (yellow raincoat slicker and red fireman hat). He was a skateboard dude (shorts and checkered Vans). He was a doctor (black pants, long white shirt). This year, though, I don’t think it’s going to be that easy. Maybe something like this would work. My sister thinks it’s funny. I guess I sort of do, too. (Check Zazzle.com for other Halloween/autism-themed t-shirts.)

We generally talk about Halloween for a few days beforehand, and how we’ll dress up and knock on neighbors’ doors (but NOT go into neighbors’ apartments). Alex doesn’t like candy, but he does love chocolate, and Halloween always nets some. So that’s another selling point. We discuss with Alex how we’ll dress up because it’s fun to pretend be something or someone unusual. Something that works with Alex is to put him in front of a full-length mirror so he can see how he looks when he’s in character. He enjoys this a lot, and I should remember to do this when it’s not Halloween, but I’d like him to wear something he doesn’t want to wear. Like a winter coat.

Halloween talking points

• discuss in advance
• we knock — say “trick-or-treat!” — we don’t go in
• chocolate!
• it’s fun to pretend we’re someone or something else
• we’ll look in the mirror to see how we look in something unfamiliar

Post from: Blisstree

Five Tips for Halloween