First Impressions

Today I took Sam to a developmental pediatrician to be more formally assessed. Mind you, he's already been assessed by a child psychologist who found him to be mildly to moderately autistic. He didn't do so well with the tests the first time and I have to wonder if it's because he was just in a bad mood? because today he did rather well on them. He placed those darn pegs in that pegboard and did the shape puzzle no matter which way the doctor turned it. I was so proud. He also brought her a book and made pretty awesome eye contact. And patience? Wow. He was a champ, only melting down after three hours. The doctor actually said that Sam could "grow out" of his diagnosis, which is, frankly, the most optimistic I've heard anyone on the subject of my children and their special challenges.

I feel like dancing a jig... I gather this unexpected happiness around me like a hug and look forward to starting their ABA class in a few weeks. The days since getting our diagnoses have been a series of ups and downs so dramatic that I miss therapy of my own. Some days, I am flying with optimism, hopeful for the interventions we're getting so young. The next day I am lower than low: you couldn't peel me off the floor with a pint of Ben & Jerry's.

And to make the day really special: when I came home with Sam after our appointment, John raced barefoot across the lawn to meet me and grabbed my hand. Ah, sweetness.

Back-to-School for the Grownups

Last night I met eight other families with an ASD child—part of a 12-week class on how to communicate effectively with our kids, called the Hanen program. Hopefully we will learn super-effective strategies on getting J&S to speak, but for now I am just happy to meet and know other parents with children like ours.

Nanny Appearances

Today I'm trying out a new nanny. Here's the thing: I haven't told her that J&S are on the autism spectrum yet. I did say "oh yes, they have many delays, they are being seen by specialists to help them catch up." But in the face of her utter confidence that SHE would be the one to teach them how to _____ (fill in the blank: feed themselves, dress themselves, play make-believe) I withered. I expressed doubt, of course, that it would be that easy. Every child develops at a different rate, she said. Wow, how many times have I heard that?

I know I should be upfront about it. I fear that if I tell her before she's gotten to know their sweetness, the complete joy that spreads across John's face when he sees Elmo on Sesame Street or the way Sam sways back and forth to the sound of Baby Einstein music, that she'll only see the Autism. Even as I struggle to understand that autism is just a part of who my boys are, I feel protective and want the rest of the world to also just see their spectacular light.

I hope she comes back. She is impressed that Sam can do many of the puzzles she offers him. She admires John's independence, how he can sit quietly for a long time and "read" his books, although I know he is really watching the light catch on the pages as he turns them. She is successful in reaching him though, in having him leave one book and look at a new one. So I do hope she comes back when I tell her.

Patience and Sam, The Clingy One

Patience is one of those qualities that I'm constantly struggling to hold onto. I'm afraid that I'm not nearly as patient as I could be and certainly not as patient as I'm sure everyone else is. This bothers me. I can feel it (the loss of my patience) begin to rumble and rise when someone says something completely ignorant, for example, or when someone cuts me off in line at the post office when I have two screaming toddlers. But today I felt it when Sammy grabbed my leg every time I tried to leave the room. "Aarrggh..." I wanted to scream. Just "aargghhh....!"

If I lash out at the line cutter or at the ignoramus, I often feel a release. In other words, sometimes it just feels good to yell or call someone out. The guilt I feel, however, after prying his little hands off my leg (not just once or twice today, but SEVERAL times) is awful. I'm never sure, as an Autism Mom, whether Sam is clingy because of the autism or if this is normal toddler behavior. (This is a recurring question in my day-to-day life with them)

I did scream "aargghhh...!" as I went into the kitchen (hardly a reason to call in the troops) but his sobbing pelted me. His brother, John, is usually oblivious to my comings and goings. Does this mean that Sam is not as affected by his autism? Perhaps guilt is really the wrong thing to be focusing on if he seeks out contact and connection with me all the time. Hmmm...

Curveballs

It seems that life is constantly throwing curveballs at us these days. If my grandmother dying, the boys being diagnosed on the spectrum and my husband hospitalized weren't enough, I've also lost my nanny, my mother has moved and I'm quickly gaining back the weight I lost after months of sincere effort. I've considered getting myself back into some serious therapy and then wondered, "well, why not write?" So here I am. I hope I can chart the journey our family is taking with our identical twin boys as we navigate Autism All The Time, which is how it's been feeling these days.

My boys, John and Sam, just turned two years old. Both have been diagnosed with autism spectrum disorder: John moderate to severe and Sam mild to moderate. All these qualifiers mean nothing to me right now, except to make my research on the internet one of utter dismay. My babies are just beautiful to me and I'm struggling to make sense of what their diagnoses mean for all of us as they grow.