The Family Room

Jumping Monkeys on Autism

Last week, I had the opportunity to chat with Megan Morrone and Leo Laporte on their fabulous podcast, Jumping Monkeys. The show features a segment called "Spend Save Give," on things you should, well, you can figure it out, plus interviews with authors, bloggers and various experts in all things parenting, plus a bunch of other cool stuff. It's a great show, and I was honored to have a chance to participate. You can listen to it here, or subscribe to their podcast at iTunes/Podcasts/Kids and Family.

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What a lovely surprise: this past week, Michael Goldberg of Autism Bulletin wrote to tell me that The Family Room was voted one of the most interesting blogs by parents of kids with autism spectrum disorders. This is especially gratifying since Michael is a journalist and, like Kristina's Autism Vox, his blog is rich with news and a range of resources for all of us following topic "A."

He's just posted a series of informative articles aimed at parents of newly-diagnosed kids; I'll be digging into these in more depth later this week. It's also exciting to be in such impressive company along with Kristina, Susan Senator and Maddy (Whitterer on Autism), who I read regularly, and Judith Ursutti (Autismville) and Lisa Jo Rudy from About.com’s Autism blog, who I'll be checking out now. So thanks Michael, and thanks to all of you who voted!

And if that isn't nice enough, Niksmom sent me this excellent award, which I appreciate not least because I think she is one of the most tireless, brave and generous women writing on autism these days. And with every meme must come a meme-ee. So I'd like to pass this on to my good friend Daisy Mae Fatty Pants, also known as Emily, for the following reasons:

1. Long before our blogs were a glimmer in our eyes, Emily was actually one of the first autism parents I met. I don't think I'd be giving too much away to say that, for a while, our sons had OT appointments at the same time. In those early days, Emily was unfailingly generous and helpful to this terrified, overwhelmed mom as we sat in the waiting room during our sons' sessions. Then she moved away, unfortunately for me, and we fell out of touch until she commented on my blog one day. Then she started writing.

2. Emily's blog, A Life Less Ordinary, is unusual, even unique, in that she is a biologist and is therefore able to offer analysis on new studies and explain them in a way that makes sense to mere mortals like me. That's been exceptionally useful as these new reports on possible genetic factors are released; it's a kind of context that's hard to find, and well worth the time.

3. She's very, very funny. Bone-dry sense of humor, which I love.

4. This is an excellent opportunity to ask her where she got that name. And how Mr. DMFP feels about his moniker. Fess up, Emily.

Wow. What a difference a year makes. Thank you all.

Three hundred and seventy-one days

Three hundred and seventy-one days ago, on a Friday night very much like this one, I lay next to Isaac in his narrow bed, willing him to fall asleep. My heart was racing, I felt trembly and panicked. This isn't sustainable, I thought. How do people do it? He shifted his weight, rolled over onto his stomach and popped his thumb into his mouth. There's just so much, I thought. So much to do. I can't keep track. And I didn't have anyone to talk to...who'd been there. Who could tell me that their kid was also fixated on doors, or melted down at people's houses. Who had clever comebacks for the nosy strangers with helpful parenting tips. Who got it.

Sure, we had a lot of flyers. The Hanen method. ABA exercises. Excel spreadsheets to track learning opportunities and challenges and emerging skills. Evaluations, insurance forms, notes from school. Scribbled Post-It notes with therapists' names on them (therapists, usually, with no open spots). "No drooling was observed," reported one speech evaluation. "Teacher's self-report indicates moderate to severe autism," another read. "You should probably think about a special needs trust," a therapist (long since gone) had helpfully suggested.

The Web was a minefield. I'd Google "autism" and hundreds of sites came up, clinical, therapeutic, dry, political, well-meaning, narrowly helpful and some, I thought, legitimately nuts. I'd Google PDD-NOS, and the descriptions were so terse as to be completely useless. "Actual mileage may vary," they may as well have said. But nothing I found could tell me what it was like from the parent's perspective.

Then there were the books: The Out-of-Sync Child (How is this like Isaac? I thought. I don't see him. This isn't helping.) Susan Senator's Making Peace with Autism (oh God how are we gonna, but she's getting through. Maybe it'll be okay. She seems okay.) Stanley Greenspan's The Child with Special Needs (OhGodohGodohGod eight twenty-minute sessions per day?!? How can we possibly...and where's the part that tell me how it all turns out?)

[Flash forward to tonight: feet pounding down the hallway. He's having trouble sleeping. Some things haven't changed all that much.]

I lay in that bed that night 371 days ago until Isaac finally fell asleep. And I thought about what I was going to do. We were past the initial crisis and into a new phase, and the knockdown dragout of that first 18 months post-diagnosis was wearing us to a nub. I'd thought about writing about all of this, but what? Did the world really need another blog? But then I thought about those spreadsheets, those hard-won realizations, those Post-It notes, those scribbled phone numbers. I thought about the way we felt--hollowed out--when we left the developmental pediatrician's office for the second time and learned that what we thought of as a blip was turning out to be our future.

I woke up the next morning and talked to J. And I just started writing. That was a year ago this week. I've learned so much, met (most virtually) so many amazing people. You're living it. You know what to say to help me feel better when I'm down, and you understand how much it means when, out of the blue, Isaac says, "yeah." And I've been stunned and grateful to hear from so many other parents who are living this life and who, like me, have spent many restless nights trying to figure it all out.

One day when Isaac is a little older, I'll have to pull back the curtain on some of the more intimate aspects of of our lives. But there's a ways to go and a lot to talk about before that happens.

Thanks for being part of this community we've created. Thanks for sharing your stories. Thanks for stopping by.

My New Friend Elizabeth

Thank you Stefania for this lovely photo of me with Elizabeth Edwards at the BlogHer07 party this past weekend. What a thrill to meet her--amazing woman.

Of Pomegranates, The Monkees, and Large Explosions

I have tag guilt. In the past few weeks, Kristen, Jen and Vicki have kindly tagged me, and I have to admit I have been a wholly unsatisfactory tag-ee. So I will try to undo some of my bad karma with this post, and plan to do better in the future. Vicki's tag was the "Eight Random Facts" meme, which has been making its way around the blogosphere lately. First, the rules:

1. Let others know who tagged you.
2. Players start with 8 random facts about themselves.
3. Those who are tagged should post these rules and their 8 random facts.
4. Players should tag 8 other people and notify them they have been tagged.

And now the facts:

1. The sound of Garrison Keillor's voice sets my teeth on edge. Nothing personal, Garrison, but I have to change the station whenever A Prairie Home Companion comes on the radio.

2. My parents were in the music business, so as a child I got to meet a lot of celebrities: Michael Jackson, Stevie Wonder, Davy Jones (of Monkees fame), and Smokey Robinson, who came to dinner and chanted Buddhist prayers in our guest bathroom between courses, slightly freaking out my mother, who feared they might be ill.

3. I have published a few translations of poems and short stories from the Italian.

3. I really, really, wish I could sing.

4. Vicki, this is for you: I do love to cook, but I don't have much time for it. I subscribe to the "use great ingredients and don't do much to them" philosophy, which works pretty well in crunchy-organic Northern California. I'm a horrible baker though, because I can't help experimenting.

6. I read every single book Agatha Christie ever wrote before I turned 18.

7. I went to elementary school with Todd Haynes, who was my best friend in the 5th grade. He was the first vegetarian I ever met, introduced me to the pomegranate, and cast me opposite him as Mrs. Keller in our 6th-grade production of "Helen Keller." His mom directed.

8. I sort of have a periodic thing for video games, especially the ones where you have to shoot aliens. And I love movies. Love them. Talky, emotional ones, ones where things explode, whatever. But they have to be good on their own terms.

Now I have something else to admit. Most of the people I thought to tag have been tagged already, so I'll tell you what: I'm planning to meet some new bloggers at BlogHer, so will introduce you to them after I get back. Deal?