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.

Comments

[susan senator]

Hi -
I wish I had words of wisdom for you, but that's why I wrote the book: because we all come up with our own answers, our own formulas, our own peace. We are the experts on our children. It is possible to have a happy family, it just might not look the way you expected way back when! Nat's 18 now and doing great. He's still very autistic, but he is also very great.

[kristen]

Susan, this is beautiful. And thank god for the rest of us that you did decide to start writing. I still have the very first email you sent me--not quite a year ago--and I remember being so relieved to find that our story wasn't unique, that there were other parents out there struggling with the same things and carrying the same heavy load.

Yes, thank god you started writing.

[Niksmom]

Susan, thank YOU for having the courage to sit down and start writing 371 days ago. I was exactly where you describd when I reached out and found you...and so many others.

Like I said in my post last night...God bless technology. It's kept me sane in so many ways.

[kal]

I haven't told you how much your writing has meant to me. I don't know what I'd do either without this community and without each parent's perspectives and words of advice and wisdom - especially when I'm feeling alone. Keep on writing.

[Christa]

Like you, I was given all sorts of advice and recommendations for various books that promised to help me understand my son.

But your writing (and that of other parents) has been, hands down, most helpful to me on this journey.

In the end, we are the real experts when it comes to our children. Sharing our instincts, observations and joys makes us all a lot smarter.

Thank you.

[drama mama]

Oh my God. I felt exactly the same way, read the same books.

Yes, thank God for technology; thank God for YOU.

I'm having a moment RIGHT NOW, which is why I'm here RIGHT NOW, and lo,
here is this post.

Whew.

Thank you.

[gwendomama]

we haven't visited that deep deep place...but we are using ABA as a form of speech therapy. all day i struggle now with my parenting. is it quality time? am i making something of it? can i turn this into an opportunity to request language? should i use a motivator? can i just let him watch kipper and have a snack?????????

SHEEEEESH!