Worshipping at the Temple Grandin

This past week I went to hear Temple Grandin speak. Ever since entering the world of Autism, hers is a name I've heard bandied about and I was curious to see what she had to say about growing up autistic. Even though the title of the lecture was "Animals in Translation: How Animals Think and Feel," I found her mesmerizing. Rarely have I attended an event where the speaker had my complete attention. She spoke easily and authoritatively on her autism and seeing the world from an animal's point of view. (you can hear her webcast here)

In addition to this gem: "Aspergers is just a medical name for a nerd," (she really was funny...ah, would that it be so), she talked about horseback riding therapy and said she has heard many a nonverbal child utter their first word atop a horse. (Is two too young to start?) I got the chance to speak with her briefly afterwards and found she's a big proponent of the GFCF diet. I'm seriously considering this as John's stimming has become more and more constant.

The more she spoke about being able to see the world from the point of view of animals, the more I thought about John's sleep issues and wondered if I could somehow "see" what he's seeing when he awakes so loudly, so abruptly. Is it too dark? Is it too bright? Is he cold? Is he hot? Is he scared?

That is how I came to change the nightlight in their room to a smaller one with a softer glow.

That is also how I found myself at my dusty old sewing machine creating a weighted blanket with beans (the first, at 5 pounds, was way too heavy; the second, at 3 pounds: just right) that has really seemed to make a difference. Three straight nights without a wakeup…!

(crossing fingers now)

New Skin

Picture this: I am sitting in the middle of the boys' room at 4 a.m. sobbing. Yes, both boys are also quite upset, but it's now been three hours of this crap and I am tired, so tired. And really, all that is left is either to run screaming from the house or cry.

When I was in my early twenties, I had — like many a 20-something — a crisis of identity. Who was I now that I lived on my own? Who did I want to be? Why was I so sad all the time? What did the future hold? Well nearly four years of therapy later, I felt much better: living will do that to you. By the time I was in my thirties, I had my feet firmly in a career, my own apartment, my own life. I liked who I was and, more importantly, I knew who I was. I felt comfortable in my own skin which only made things easier when I married a man who felt similarly comfy.

I thought about this last night as I tried every tactic I could think of to get first John, and then Sam back to sleep. I thought of the woman I used to be and wondered what had happened to her skin — why did it feel so foreign, so unfamiliar? Why did it feel like I was watching myself from above? Why do I feel so disconnected? Could I possibly be having another identity crisis?

This morning I realized, with the clarity that can only come after going 24 hours without sleep, that I need new skin. I need a tough new skin, one that will see me through this transformation into an Autism Mom I can feel good about. Because, really — I am so not there. I am mad at Autism all the time. Right now, it is not some quirky cute thing that makes me smile. It's not just "who my boys are." It is what prevents John from looking at me, it is what makes him jabber to his hands and not hear the rest of us. It is the loud shouting he's doing at 2 a.m., 3 a.m., 4 a.m., wearing down my very last nerve.

And yet? And yet. There are moments, rare moments, when John will come up to me and hold my eyes like he's seeing me for the first time…the smile that spreads across his face is like sunshine on new-fallen snow. I could burst from hope. And the joy with which Sam wakes spelling: "C-A-T. CAT! B-U-S. BUS!" The funny turns of phrase he's started with, the fact that he's actually reading, and I think, Yes, we're going to be okay. I can do this.

I'm growing my new skin.

Going Around in Circles

My child has started to spin. We have had the toe-walking, the hand-flapping, the no-eye-contact, but we never had spinning. Now John is compelled to spin and spin and spin. He spins until he's giddy and falling down, dizzy. How do I shake the terrible fear that grips me when he gets going? The fear that he's disappearing, and that I can't follow. He still responds to tickles, to the physicality of being held by his mommy — but soon, too soon, wiggles and bucks to escape my embrace to return to his spin, spin, spinning. So happy, smiling at something I can't see. Will I see it one day?

Feeding Success

Just in case you think it's been all doom and gloom around here, I'm thrilled to report the following:

When one dawdles in preparing the morning meal, one can expect impatient, hungry boys, yes. But if one happens to place the bowl of cereal in front of the hungry young men and then turns her back for a split second, you will watch open-mouthed as a certain young man (John!) grabs the spoon and feeds himself

(pan to seat, floor, table, hair covered in cheerios)

And look who followed.

A New Year, New Battles

Last week we started John's 10-hours-per-week of in-home ABA therapy. It's hard to say how it's going yet, but I'm anxious for it to go somewhere. If this is possible, (and I know it's supremely unfair to have Sam as a constant comparison), J. has become more "autistic" over the last month. He stims constantly: pressing his thumbs and forefingers together tightly then fluttering his hands about his face. Sometimes he looks like he will go cross-eyed from the energy it seems to take. He has also been waking pretty regularly between 4 and 5 a.m., very excited and very loud. When I pick him up, his limbs are rigid and tense. It can't be very relaxing to be so wound up and his developmental pediatrician agrees: we're scheduled for a 24-hour EEG in the next few weeks to rule out seizures.

Seizures. Can anything else be sent to this little guy?

When they were born and the pediatrician checked them out, the words He has a slight heart murmur were alarming but benign when followed by Lots of babies are born with them and are fine. But John's wasn't small and he failed to thrive. He had open heart surgery at just three months of age to patch a huge hole and I thought I'd never survive it.

Memories so clear: him lying in his little gown staring up at me from the cavernous, sterile crib, smiling up at me and everyone who came in to see him, so happy and so trusting. As he lay there, he would excitedly kick his legs and tense them, much the same way he does now, but at 4 a.m. standing in his crib.

He survived the surgery only to develop a staph infection in his incision site a few weeks later, requiring another long hospital stay and a month of super strong antibiotics delivered daily through a central IV in his chest. I thought HE'd never survive it: so many drugs coursing through his tiny body, this couldn't be right for a little baby, could it? And don't think I haven't wondered if this in some small way has contributed to the severity of his ASD.

Now we are looking at potential seizures.

I am no longer an innocent new mom. I feel like I've already fought too many battles and they're only two years old for pete's sake. I'm battle-weary. And just a little bit battle-sad today.