Wednesday, May 19, 2010

Parenthood/Autism Speaks

Although I am glad that the show Parenthood does a lot to bring attention to Autism, as does Autism Speaks, I urge people to donate to their local Autism charities and research facilities. Autism Speaks has long been known for their high salaries and low grant giving. In 2008, their CEO made $646k and they gave out grants totaling $66k.

This article provides a link to their 990 tax form.

Tuesday, May 4, 2010

Tips for Hosting Autistic Children article

I stumbled upon this article and had to post.

Here's the link:

Autistic Partygoer

The author and his autistic son would love to come to your kid's birthday, thanks. Here's how to make everyone feel right at home.

By Paul Collins

Our friends' birthday party for their daughter Zoë was going wonderfully. The cupcakes were out, dogs romped in the yard, and all the children were blowing bubbles around the abstract bronze sculptures in the garden. All of them, that is, except my son Morgan. He'd retreated to their attic office.

"It's okay," my wife, Jennifer, explained after she came back down. "He's on Amazon, looking at guitars."

Our host took it in stride—she knows Morgan's autistic. These days, that term pops up across a whole spectrum of kids, from a bit geeky to profoundly withdrawn. Morgan, 10, has the classic midspectrum symptoms: He makes little eye contact, repeats phrases, sticks to yes-and-no answers, and is just generally in his own world. He can repeat every Gibson guitar model number but can't tell you what city he lives in. His special-ed classmates with related conditions like Asperger's syndrome can be too conversational—they'll lecture you for an hour on dinosaurs—but they share the same lifelong neurological difficulty in grasping social interaction.

Since autism is by definition a socially awkward condition, how do you square it with that most social of activities, a kid's birthday party? As diagnoses rise—the Centers for Disease Control and Prevention now estimate 1 in 150 eight-year-olds nationwide—it's increasingly likely that your guest list will include an autistic child. Inviting us to a birthday (or any gathering) takes some extra insight and the tiniest bit of planning. But we'll thank you for it—and so will our kids, in their own way.

Our RSVP: "Yes, please."

Birthday parties are an ideal way to introduce an autistic kid and his parents to your home. A child like Morgan doesn't necessarily understand social calls or more elaborate outings, but playdates and birthday parties are things families like ours cherish. They're the stuff he finds logical: presents, cake, things to climb on. What's not to get?

Pardon our picky eater.

Autistic eating habits aren't exactly a food pyramid; they're more like a food obelisk. (Our obelisk is made of peanut butter.) Some autistic kids also have digestive difficulties that require dairy- or gluten-free diets, so ask if your guest has any favored foods. Don't worry; the parents probably won't take you up on it. And no one will expect you to whip up a gluten-free cake. But they might want to bring some treats themselves, so don't take single-serving Tupperware as an affront.

Put away the Fabergé eggs.

Autistic children have little concept of "don't touch." But they don't always beeline for the breakables. In fact, they may discover some unlikely sources of joy in your home: Morgan considers a refrigerator's in-door ice maker, for instance, to be one of humanity's great achievements.

Sensory overload happens.

When the outside world gets overwhelming, autistic kids need a familiar realm to retreat into, and that's often TV or games. Our best visits have been to friends' houses that have a home office with a computer. Still wearing his party hat, scarfing a cupcake, and watching Nora the piano-playing cat on YouTube, Morgan becomes the very picture of contentment.

It's okay to ask us about autism.

Really, we don't mind. We're a family, not a tragedy, so we don't need comforting—but autism's clearly part of who Morgan is, and it's apparent as soon as you meet him. While some parents shy away from speculation about autism's causes or their child's future, matter-of-fact questions are fine: "What's his day like?" "How does he get along with his siblings?" And best of all, "What does he like?" Many autistic kids have a consuming fascination with something, just as Morgan does with guitars.

It's okay to not ask us about autism.

Honest—as long as you're not pretending Morgan isn't there or acting like he's a nuisance. It's a soiree, not a seminar.

Have an explanation for other kids.

If Morgan doesn't react to other kids, I tell them, "Morgan's autistic. He's not ignoring you. Autism means he's sort of daydreaming—like he's watching a movie that other people don't see. And he might not want to play with you, but he loves to watch what you're doing and play next to you."

Small talk is a big challenge.

Autistic kids' conversations are often of the "I want" variety—although, because they frequently reverse pronouns, they may say, "You want a glass of water." They'll also repeat random phrases from songs or TV, or repeat your words back to you. Try asking them about what they're doing or looking at. If they don't respond, don't take it personally. They may not be ready to talk to anybody at that moment.

He may not get in line for the piñata, but he's still having fun.

Following instructions and turn-taking don't come easily to Morgan; he often doesn't see the point. Includ­ing him in an egg-and-spoon race is worth trying—he may not show any interest, or he may have a blast. But if an autistic kid doesn't take to a game, don't fret. He'll find other things interesting. It may not be how you or I experience a party, but it's still a party to him.

A meltdown is a meltdown.

Occasionally autistic kids have meltdowns that can bring everything to a screeching halt. But they're not so different from toddler tantrums. Ask the parents if there's anything you can do, then move along and let them calm their kid down. The child will get over it, and so will your party.

Pat yourself on the back.

Having an autistic kid over can be almost thankless—while you'll get our fervent appreciation, there'll be at most a mumbled thanks from Morgan. But here's the thing: He notices. Months after Zoë's party, he kept surprising us with all the details he remembered, and he's still asking to go again. Of autism's many paradoxes, now you know its greatest one: Your kindnesses may not be acknowledged, but they're always felt.

Monday, May 3, 2010

Swimming lessons

Today was Joey's first swim lesson. I planned it so well because even though he wasn't in his friend Natalie's swim group, I knew she would be there and it would help him feel more comfortable (and increase the probability that he would actually go into the water).

Natalie is Joey's friend from school and they are inseparable!

When we were leaving school, Joey ran after Natalie, like he always does, but I told him that she wasn't staying to play; she needed to go to swim class. He said ok and then played with his other friends for a bit. Then, when we got to the pool, there was no anxiousness and I think it's because he knew Natalie would be there. As soon as I got his swim trunks on, Natalie pulled in and Joey was jumping for joy.

They ran in together and ran around until class started. When Natalie went off to her group, Joey wanted to follow and was a little bummed, but then he went willingly to his group. 4 boys (including him), 1 girl, and a tatted up swim instructor.

They went into the big pool with two other classes.

To be continued...

Sometimes you provide hope when you don't even realize it

Today, a mom came up to me outside of Joey's school and said "I heard Joey has Autism." I said yes and asked why she was asking. It ends up that her 2 year old son was just diagnosed with full blown Autism (Joey has PDD-NOS). She told me that seeing how well Joey is doing and the fact that he is in general ed preschool gives her hope for her son.

It's nice to know that you can inspire and give hope to people you barely even know, just by living by example that early intervention really works.

News stories today

*TV academy honors 8 TV shows with a conscience* I hope they feature the series Parenthood or the episode from Southland, about the search for a missing girl with Asperger's, next year.

*Child missing overnight found safe*

*Finding jobs for people with different abilities*

*GPS tracks Autistic son who runs*