Not sure how to make up for the missing years and give the full picture of our autism trip, so I’ll do the View Master version. For the 20-something moms who don’t know the world of 1970s toys, get your Google out. 😉 In the beginning of the autism journey, there wasn’t a lot of laughter or loving of life. If any reader here is new to autism and looking around at what appears to be a dark place, I say over and over and over “IT GETS BETTER!!” I figure you have to get yourself way down to appreciate what you have when you surface again.

W and Daddy visit me at work (probably delivering the cell phone I always leave somewhere)

It’s September 2002 and 9 lbs 14 oz of big baby boy arrives in the world. Months later, we have a happy giggling baby who loves people, and insists people notice and smile at him on the SF MUNI trains. Ladies love W, W loves the ladies. At home, he lays quietly content in his crib and watches his groovy mobile turn. Baby W turns into toddler W who has gut laughing giggle fits, loves to be hugged, loves music, loves life. We have achieved perfection. We can’t believe our luck in life.

Droolio in his jumper

In 2004, I’m pregnant again, we have the best toddler in the world, we’ve been adopted by a 22 lb cat Seamus, laughter fills the home, and life is amazing. Then the single W-isms that the pediatrician has told us to not worry about start to add up: he doesn’t walk until 1 year, he has very few words at 15 mo, he tries to put everyone’s elbows in his eyes, he loves spinning his ring toys & “playing dj master” with his crib music center, he can entertain himself forever without needing attention. We take him to Ohio to visit my family for the holidays and he slowly stops looking at people, won’t listen or pay attention when called, seems completely overwhelmed and short-circuited. My BFF (and my children’s godmother), who has a degree in child development and has always worked with kids, plays with my boy. I can’t miss the concerned look on her face that I can read so well, even though she says nothing to me. She doesn’t want to throw a cloud at her bestie who made it through her wild years and surprisingly found happiness in CA as a married, working mom; not at Christmas time when she’s happily showing off her beloved boy. Every day the red flags multiply and I can no longer fight the sinking feeling that something is wrong. Days after Christmas as I watch my father trying to play with my son and getting no reaction, it suddenly hits me like a box of bricks: OMG I’m looking at autism.

My stay-at-home husband is floored by my suspicions. When I call him the King of Denial, he looks miffed and says, “I prefer Pharaoh”. But even my Egyptian ruler of ignoring the obvious spouse is concerned at our son’s reaction to his two weeks in a new environment. I call afore-mentioned BFF to note my concerns and she says “oh thank goodness, I didn’t know how and when to tell you W’s not acting like a typical toddler.” I stay home and watch my son at the park, at playgroups, etc. I ask my husband if he has always just run around the trees rather than interact with the group of kids on the play structures, and my husband says that’s W’s thing. Everywhere I look, I realize how much I have actually missed in my blind bliss of motherhood.

W with his Daddy and Seamus the jungle kitty

The pediatrician admits she doesn’t have a lot of experience with autism, but she understands our concerns noting our son is watching the clock and not looking at her or answering when she calls his name. She delays her next patient, makes calls and gets us a list of resources. (Side note: I do have my issues with Autism Speaks, but I give them full credit for raising the level of autism awareness and education in this country. I only knew about autism from catching an NPR interview driving to work. Today there are few people and hopefully no pediatricians and childcare professionals unfamiliar with the signs of autism and available autism resources.) We call the numbers from our pediatrician’s research and fate is on our side in the diagnosis process. Another family cancels last minute for the UCSF Autism Clinic and we get in within 2 weeks, vs. 2 months. As I feared, we’re told our beloved baby boy has what used to be called “classic autism” and that we need to get him into intensive therapies ASAP. Who knew his grabbing my hand and moving it toward a wanted item is different than most kids who point to the object relying on shared attention? Who knew that he’s not getting comfort from me when I pick him up if he cries, as other kids would snuggle in and look in my eyes? Who knew other kids point to objects in the books and look at their mothers to connect them with the idea, rather than just grabbing a book and clambering up in the mother’s lap to listen? Who knew it’s not actually a good sign that my son can play so happily for so long by himself? My husband is crushed; he really hadn’t thought there was a problem and expected to be told our son is fine. I was expecting it, but I still spiral. I spend the next 2 days sitting in a chair in the kitchen refilling my teapot and listening to gospel CDs. I would to thank the combined powers of Aretha Franklin, Mahalia Jackson, Donnie McClurken and the Glide Ensemble for getting me through those days! And then I get moving because I have to, for so many reasons. The next week the state Regional Center reviews the UCSF diagnosis, takes a look at my pregnant gaunt-eyed self, and funds all the recommended services without flinching. My bosses at Sun Microsystems tell me to take off as much time as I need to get things in order for my family. Bless you Maria, Susan and everyone at that company! Then I go to my son’s playgroup where I see a little bald boy, surely with cancer, run by and something snaps into place. My son has a non-life threatening condition that will improve with intervention. How much improvement we’ll see and how far he can go in life is unknown, but he’s only going up and it’s my job to get the rocket pack lined up for him.

So began my family’s autism ride. I’ve always loved roller coasters. This one has made me rethink that predilection, but for every whiplash and emotional barf-inducing drop, there have been enough curves and loops to make the ride enjoyable. I’m still waving my hands in the air with my fabulous boy next to me flashing his life-loving smile. Cuz we both love the coaster life. I had planned on the kiddy Gadget’s Go Coaster and somehow stumbled onto California Screamin, but now I realize just how dull the little ride is anyway.