long days

So I go back and forth about whether to write about what's been going on with our family. On the one hand, writing is one of the few things I know how to do, and for a long time I've felt like I have nothing really to write about. And now, that is absolutely not a problem - I have blog posts coming out my ears. But I don't write them, because like I said a month or two ago, it's not really my life I'd be writing about. It's my daughter's. And she's only 3. And I don't want to cause problems down the road for her because of my big (virtual and real) mouth.

But it's also my life. Because this is my life as a mom. And it's really hard living this life these days without some kind of outlet other than my husband to vent and process and work through all the stuff that's been going on these days. So I'm going to try to do it here. I've seen my traffic logs - I'm not in danger of needing additional servers to handle all the visitors here. So I think it will be ok. Most of the people who read here, don't know us or see us all that often in real life. And if this turns out to be a big fat huge mistake, well, it won't be the first one I've made.

It seems like everything started when L. started preschool. There were signs all along the way -- she's always been a little bit more anxiety-prone than other kids, always seemed to have a harder time at parties or playgroups or big groups of kids, but nothing that really seemed to far out of the norm. But when she started preschool last August, it just pushed her to her breaking point, I think. She couldn't handle the kids crying. She couldn't handle transitions from one activity to another. She didn't want to play with other kids. She turned down invitations to play, or would simply sit in the corner with her fingers in her ears. Every day when I would come to pick her up, I would be greeted with some variation of one of these announcements from her teachers, delivered with a look of gentle, but knowing, concern.

Things got better for a while, but over time it became really clear that she was just not on the same page as the other kids. She could come and chat with the teachers, or run to me when I came to pick her up and tell me what she did, but if another child tried to talk to her, she couldn't meet their eyes, or respond appropriately. At all. The looks of gentle knowing concern did not go away.

We set up an appointment for an evaluation with a child psychologist. And since that appointment, it seems that not a day has gone by without a phone call or a meeting or an assessment from some type of therapist. Because, it turns out, L. is "on the spectrum," as they say. The autistic spectrum.

Now I'm crying. It's really hard to type that. Even though I know she doesn't have what people -- what I used to -- think of as autism. She doesn't sit in a corner, silent, unable to be reached by loved ones. She is capable of deep connections with other people. She has all kinds of language skills. But she is on the autistic spectrum, just the same. It is a spectrum, with the kid in the corner on one end of it, and L. on the other end of it. It is a communication and social disorder, and she has it.

Our life has turned upside down since that first meeting. I don't mean that as a cliche -- literally everything about our life is different than it was. All the appointments. A new preschool. A new full-time job navigating school district services and insurance reimbursements and bio-medical treatments and behavioral approaches. And we're still not sleeping. It's insane. I can't believe this is my life now. I spent at least 4 hours on the phone last week arguing with therapists about whether she is the right fit for a diad group therapy approach, without even knowing what the word diad meant.

Despite me begging each and every doctor we meet with for a prediction of how things will go, there are no guarantees of how things will turn out. Everyone tells us that her outlook is very good. She will go to college. She will get married and have kids. She will have close friends. They tell us this. They say we're catching this while she's really young and her brain is still developing, which is great. She's high-functioning, as they say (charming.) She will just always have troubles. Troubles navigating social situations. Learning differences. Sensory issues. Motor skills problems. We just don't know to what extent.

We live in an area with tons of resources, and are very fortunate that we can pay for many of them out of pocket if our insurance or school district doesn't pick up the tab. There might not be any European vacations for a while, what with footing the bill for a weekly speech therapist, occupational therapist, and a one-to-one aide in her classroom, as well as a special (out of network, of course) pediatrician specializing in autism and the nanny to watch T. while I shuttle L. around from appointment to appointment.

In some ways, I feel like the life I had been living is over. I have a new purpose: to make sure that this child that we love more than anything in the world, can beat this. Can reach her potential and be happy and love and be loved and have everything you dream for your kids. I've fucked up a lot of things in my life, but this one -- I can't mess this one up.

So that's where I've been.