"Me!"

Well, we have some words. I am a crazed, jumping-up-and-down momma. S&J have been in their class now for three weeks and during the last circle time, when they show each child their photo to sing the goodbye song, Sam patted his chest without prompting and said "Me!" And he's counting from one to ten. It sounds something like this: "wa, oo, whee, oh, i, ick, e-en, ai, why, en!" And letters — he adores them. He brings me the little letter books and says "D!, Dug!" I'm watching this beautiful boy blossom and make connections I never expected and thrill at it all.

John is still dubious about our new schedule and complains loud and long when I drop him off. The teachers report that he cries a little less each day. If I could speak for John, though, I would imagine he's also trying to say "Me!" as in "Take me home!" or "Let me play with my truck in peace!" or "I want to check out this interesting light, go away!"

And who can blame him? Who wouldn't rather be left in peace to do what they want? I really wanted to finish a scrapbook page last night and hubbie wanted to watch one of our tivo'ed shows (scrapbooking, which began as what I thought would be cheaper than therapy, but whoa - is so not). I whined about it at first, "But I'm cutting paper! I'm this close to embellishment inspiration!" He cajoled with the promise of ice cream (my motivator) and I acquiesced. And I was glad for the interruption in the end, since it was the really well-written new show "Studio 60").

I know there's an intrinsic difference in our trying to get John to engage with the rest of us, but sometimes I wonder if, just as Sam seems to be more interested in others to the point of clinginess, that John will always be hardwired to look inward. Maybe no amount of therapy or effort on my part will make him WANT to engage more.

And what's really wrong with that? Therapies be damned. Today I am a happy momma watching the light alongside John while Sam brings me letter books. "Me!"

Choosing Our Battles

Today I heard from our insurance company that any sort of speech or behavioral therapy has been denied us because "the literature states that ABA and speech therapy are considered experimental in nature and unproven as a cure for autism." Um, okay. I thought that ABA was THE one treatment that has been considered the most effective in helping young children with ASD. And so what if you can't cure autism. You can't cure cancer or diabetes either but treatment and services are usually covered. I am building up steam for an appeal and wonder if others have faced this battle with their insurance companies. There has got to be current literature available that can be referenced, right?

The good news is that New York passed a health insurance law this week that prohibits discrimination in health insurance coverage for children with autism. Wow. I imagine there were hundreds of parents fighting for this. Kudos to New York. It just boggles my mind that with the amount of media coverage autism has received—especially lately—that insurance companies are turning a blind eye.

It feels like time is of the essence right now with J&S's "early intervention window," and here I am fighting for the help that could make all the difference while the clock tick-tocks.

What have we been doing lately? School has been pretty awesome for the boys. There is still minimal crying and screaming when I drop them off, but Sam seems super engaged with his world right now. The stimulation he receives there is phenomenal and I can almost see his brain synapses firing as he's exposed to more and more. John isn't as fascinated with it all as his brother, but I'm encouraged by the baby steps he is taking: the sensory exercises with pudding and beans and frosting are certainly stressful for him, but he's getting through it. Today he even smiled at the very new taste of sugar. I feel hopeful.

And yet...tonight I had a meltdown when my dear husband said to me "It's your turn to give them baths tonight, right?" Oh holy jello I wanted to hit him. Not only am I their primary caregiver during the day, he has been known to go on business trips for 3-4 days at a time. Do I say "Honey, it's your turn to bathe them the next three nights"? No. There is no equity in our childcare arrangements, so how dare he try to suggest otherwise. How dare he come home (yes, from a long day at the office) and not immediately see how frazzled I am? So frazzled I resort to phrases like "oh holy jello."

Sometimes, in order to gear up for the major battles in life, it may be necessary to practice on your poor clueless spouse, and I'm afraid I let him have it. I just hope I can be as concise and convey the same level of outrage at our insurance company when I let them have it. In the meantime, my husband has apologized.

My Two Goobers

Tomorrow John is scheduled for an MRI under anesthesia. I'm pretty nervous about the whole process and what the doctors may or may not find. He is still pretty unsteady on his feeet and the doctors want to rule out things. I guess I'm worried that the things they want to rule out will present themselves tomorrow. But I do know that a lot of kids with ASD have balance issues, so let's just get these tests out of the way, please!

Here is my little goober playing with his blanket at breakfast this morning...

Last week was our first of ASD "school." Through our state's EI program, the class meets three days per week (only 1.5 hours, but I'm ecstatic to be doing something concrete). The ratio is four adults to three children, not bad numbers — and is ABA-based. We still need to find a private speech therapist to give both boys the extra hours they need and will also look into a private ABA program once we see how this program is working for them. I honestly don't know how much is too much for them at two.

Here is my other little goober blowing bubbles...

Their first week at school, they both: played with pudding, held a fork, sat still for circle time and weren't crying when I came to get them. What will they be capable of after a year of this? Even in the midst of fear of the unknown, I'm excited to watch them blossom.

Depression

This is hard. Hard to make a daily habit of writing. I could tell you that I'm lazy or distracted or busy with other things and all of this is true. But the real reason, I fear, is that to sit with my thoughts and craft them into my own local coherence is almost too much for me to bear.

We took John & Sam to the pediatrician last week for their 2-year visit. It had been awhile, so we were catching Dr. G. up on the latest developments (i.e., our official ASD diagnoses) and all of the sudden she pelted me with Well, this is big. How are you doing? Are you sleeping? Are you feeling overwhelmed? (and I burst into tears as if I were a water balloon just waiting to be jostled) You need to get on some medication. You need to talk to someone. You can't take care of the two of them if you're not sleeping. I think I blubbered something about being fine and about handling everything great and about not believing in medication, and even hell no, I'm not depressed.

Well, the strangest thing happened that night, I started crying. And felt ugh, depressed. (I think Dr. G made it happen—really, I blame her.) And then I looked at the calendar and realized it was 9/11. Five years ago I was still a newlywed about to celebrate a one-year wedding anniversary, motherhood was still just an idea. Hubbie and I still lead a pretty independent lifestyle where meeting after work for a drink and a game of pool was still in the realm of possibility. I remember trying to find my mother all day. She worked right across the street from the Trade Center. Late that night I heard she was walking into her building when the planes hit and was able to evacuate via ferry. I remember the everyday feeling unreal—getting a cup of coffee, grocery shopping, reading a book. A feeling of dread that blanketed my shoulders like a wet shawl. Feeling that dreams were pointless so why bother, why do any of it at all?

But now I have children. The dreams I have are now for them and today their autism is the shawl I try to shrug off. These days I've been feeling its weight behind my eyes, it is true. Crying hasn't felt as automatic, as wrenching, in five whole years. It's almost self-indulgent. I have nothing left to do but finish and move on.

It's Not You, It's Me…

The front page of today's paper made my husband seek me out with worry. A pretty comprehensive study has found a link between advanced paternal age and the incidence of autism. It's not often we hear advanced age in the same breath as paternal. Part of me thought It's about time buddy, but a bigger part of me really doesn't care. There have been so many studies, so much head scratching when it comes to figuring out ASD, and really — who knows?

I concede to having felt extreme guilt for things I unknowingly exposed my boys to while pregnant (is that what happened?) and to have looked at my husband's two older boys who are NT and thought, well, there must be something wrong with me then. If truth be told, I secretly thought my advanced maternal age (now 40) not only gave me twins (my aging confused body split its embryo in two) but is also one of the main reasons my boys have delays (old eggs).

Well, today is a new day and I'm tired of thinking about the whys. I adore my children — beautiful, confounding quirks and all.

Joy and Grief

As much as Sam is more engaged with the world, that is how much John is not. I've been thinking about my last blog, about joy and grief, and how two such opposite feelings can be felt at the same time.

Ever since I first discovered I was pregnant with twins, my world began to be colored by the enormity of two. Two babies, two little creatures who were going to need me to be their everything. What a miracle to be pregnant at all, but two? I really didn't know if I'd be up for the challenge. When they were born, the utter exhaustion of caring for two newborns shaped my days and my emerging new identity...I was a Twins Mom. And as the months marched on, I thought I might be turning into a good one.

Today, my life and days are painted with a new defining quality — Autism Twins Mom. Today, Autism seems to get top billing. Autism seems to be the new enormity, the new exhaustion. And yet, there is also joy in tiny triumphs, the eye contact held for longer than ten seconds, the squeeze of the hand, the smiles that greet me in the morning.

Is it wrong for me to feel such happiness on hearing that Sam may outgrow his diagnosis? Am I betraying John, who I love so dearly, just by hoping for it? I know that one day I will instead call myself Mom of Twins Who Happen to Have Autism. It's getting to that day that worries me, all the joy and grief standing between now and then.