"I Read Your Blog"

As a shy writer, one who stopped writing for even the hope of mass consumption back in the late eighties, I felt something akin to panic upon walking into a room full of people, each who greeted me with “oh! I read your blog.” There is something unsettling about meeting your public – all who are friends of your father and stepmother – and have them know more about you than you’ll ever know about them. Of course, they probably would even without my blog to lay bare my every last thought, but still. I think I imagined that only members of my fellow autism-mom community read me, plus a few close friends (and obviously, members of my family).

It makes me feel even more shy.

But not really: is there such a thing as a shy writer? I mean you might be shy in person (as I am until you get to know me), but that usually disappears on the page once you’re off and running. I wrote in college because I found it was something I liked and could do reasonably well. I had dreams of writing for a living, of writing The Great Book. To be 22 again and imagine that’s possible.

Yes, I suppose it’s still possible — in another life. But I digress.

My stepmother celebrated her 60th birthday this weekend. My brother and I left our families at home and trekked north for the party. I weighed the strangers, the noise, the disruption of our routine against bringing them -- and so they stayed home with their daddy. It was odd, though, not to have a child tugging on each hand, it was unusual not to wear sweatpants. It was great to talk to other adults — in person! It was terrific to feel true warmth from and for the woman who survived my teen years. It was so nice to feel unencumbered, even for just 24 hours.

What valuable “me” space. Now that John’s early morning episodes are becoming more rare, I’m the one waking at all hours to worry and pace.

We’re have an IFSP meeting this week because we asked our EI team for more services. A preliminary talk about this indicated that they would have both boys leave the classroom they attend 4.5 hours a week in order to provide John with more in-home ABA. That there is some arbitrary “cap” on the total number of hours they can provide each child in the entire county. It seems contrary to the IDEA, at least as I understand it. Not every child needs the same level of intervention, right? What if we need more and we’re denied?

Well, needless to say, this is what’s keeping me up nights. Oh, and my filthy house. The dirty floors, the accumulated dust on shelves, the bathroom tile turning black… it’s all conspiring to bring me to my knees. And you thought the autism diagnosis would do that. No, I’m handling that okay, it’s all this other stuff. The dishes in the sink, the piles of dirty laundry. It’s the tick-tock of the clock and my office phone ringing. It’s getting Sam dressed and seeing with dismay that his jeans are waders. When did he get so tall? There are not enough hours in my day. I can’t get the space, the time, the psychic room to breathe… except for here, in my Blog O'Therapy.

Which I thank you for reading.

Brain Trust

An EEG is a daunting procedure for almost anyone, and you'd imagine that for a two-year-old with autism, it would be intolerable. Not so. John allowed 21 wires to be glued to his head while cradled in my arms. The first 3-4 gave him some anxiety but after he realized I wasn't going anywhere he put his attention to more important things: Bear in the Big Blue House. Good thing I remembered to tuck along Tutter, Ojo, Bear, Doc Hog, and Shadow in our bag. He even allowed his head to be wrapped in gauze after all were duly attached. His look was one of profound boredom, Oh if you must, just let me watch my video.

Periodially, of course, he would remember that there were 21 wires attached to his head and I would jump up to give him a hug or a tickle to distract him.

We're trying to rule out seizures as a cause of John's recent sleep disturbances. The EEG was supposed to try to capture him asleep — this from a boy who hasn't taken a nap in close to a year. But they can glean a lot of information, they said, from the three hours his brain was monitored. I worry, of course, how he did and did not notice the flashing strobe lights that twirled over him. How he looked forward without blinking.

The whole time, his brother was waiting in the Big Important Hospital's lobby area. My phone kept beeping with cryptic (Sam hysterical) and not so cryptic (Need diaper) text messages from hubby. Big Important Hospital (or BIH) is close enough to be the obvious place for us to go, but it's far enough that we tried to schedule as much into the one day as possible. Big mistake.

What were we thinking?
(Oh, did I mention the blood draws? The 4 nurses who had to hold each of them down?)

But we were there, and after the EEG we met with the developmental pediatrician for their follow-ups from last summer's initial diagnosis. Predictably, Sam scored very well on his tests and was spelling the minute he walked into the room. John, I think, was tired from everything that preceded it and was stimming a lot. It was hard to get him to focus.

But troubling me more is the MRI he had last fall apparently shows a possible abnormality in the cerebellum that we're just hearing about now. His doctors are sending it to a specialist in Chicago to check out.

A very long day. And two very tired little boys.
But Bear and Tutter saved a good part of it.

Celebrations

Over the weekend, we took J&S to a birthday party for a little boy in our neighborhood who was turning 3. Sam has been to many in the last few months — quick little affairs that were more playdate than party, but John has ABA just about every Saturday and so has stayed home with his daddy.

A little history: We went to our first birthday party last summer. Held at the Little Gym, it was full of loud, boisterous children and structured into dance time, singing time, and sitting-to-eat-pizza-and-cake time. In short, everything that my boys hate. It was one of our first big outings where there was a large group of neurotypical children and we were barely one month into hearing our diagnoses.

I'm sure it wouldn't surprise you to hear that it was rough all around.

When all you see and know every day is your own children, it can come as a shock to meet their peers and see how much more they're saying and doing. Both boys were overloaded with sensory stuff and tantrummed pretty badly. Because of their food issues, they refused to sit at the table, nevermind try birthday cake. Back then, we had yet to hear even one word out of their mouths.

I remember a lot of stares, a lot of open mouths. I remember two little boys who kept seeking the exit door at every opportunity and the non-stop stimming. I remember feeling red-faced and hot and incompetent. Both of us were relieved when we were able to duck out, saying our goodbyes while each trying to restrain our respective child.

So yesterday's party inspired a bit of apprehension. There were 15 children expected and it was being thrown by a party company. What if the boys couldn't handle the decibel level? What if they threw a fit as soon as we arrived. Did I really have the energy to face 15 sets of parent faces?

I shouldn't have worried.

I should have given us more credit: we're all much better at this. We take their lead, structure be damned. They don't want to dance in a circle? Who cares. They'd rather take our hands and lead us around and around the house? Okay. The idea of sitting at a table to eat pizza is their idea of hell? Ours too.

And when a few moms looked at me while I tried to calm J., I just smiled and told them he was tired, while I watched their neurotypical kids have their own meltdowns.

Of course, we are nearing one year since we first heard the word "autism" ascribed to our sons — last February when they were just 18 months old. So as hard as life can sometimes be, there's been a whole lot of growing going on.

And a whole lot of acceptance.

Looking for Charms

The Weighted Blanket has helped a lot, but it's not a magic charm. On the fourth night, John was awake from 3:30 to 6:00 a.m. while Mommy cursed Daddy's business trip. Good thing there are no more of those entire weeks away for another several months. Being slammed with my own work and a bad cold are making things interesting in a "I'm-still-losing-my-mind" kind of way. But this all takes a back seat to John's progress.

He said "I want more" while bouncing on a trampoline at school. He said his name at circle time and also said "Elmo," while looking at a Sesame Street book. He is making more eye contact — he doesn't hold it for very long, but he is making more of it. I know it's because of the ABA he's been getting at home, the quality one-on-one time that Sam prevents me from giving his brother.

More than once, I have been accused of being a "glass-half-empty gal" — mostly by my husband who is decidedly a "glass-half-full guy" — and I tell him that this may be true, but it is my job as their mother. My job is to worry, to fret. My job is also to rejoice, to celebrate, to cheer. I am both mommies. I am me. Stop throwing the glass at me, already!

On good days, I think that we are lucky: my boys are beautiful and healthy and amazing human beings. Things could ALWAYS be worse. On less stellar days, I wallow and wring my hands. This is life. Every day has its ups and downs and even if my boys were NT, even if I were not a mother, surely my life would still be full of the ups and downs, there would just be a different barometer by which to measure their seismic toll.

I believe that we all deal with our lives, our situations, our particular challenges, in different ways. And thank god for that. Some use humor and wit, some use poignant metaphor, others logic. But all writing gives insight and serves as a window onto another's life, which in turn illuminates our own.

At least that's what I'm thinking about today.