long days

Out of all the things that have sucked with L. getting an ASD diagnosis, there have been some unexpectedly pleasant aspects to the whole situation. One thing that I keep noticing is that we are all a lot easier on each other -- me and her dad, and both of us with her. I guess that we run the risk of spoiling her and becoming complete pushovers with no limits whatsoever, but it's such a relief to stop forcing ourselves to go through the motions of normal parenting and watch it backfire over and over again.

In a lot of ways, getting the diagnosis has been like getting the key to some kind of puzzle or brain teaser -- once you know the solution, you can go back and look at all the problems and now you understand the language for the first time and it starts making sense.

Example one: potty training. For sure, we have made a huge mess of it. But from what her occupational therapist tells us, her nervous system isn't giving her the message yet when she needs to go, and because she's under-responsive to a lot of different kinds of stimuli, it doesn't really bother her to sit in a wet diaper. She's not going to be potty-trained until we can help her sort out her basic neuroligical issues, no matter how many packets of M&M's we dangle in front of her for sitting on the potty. And "they" promise me that it will happen. Soon. Of course, I almost shot the OT when she gave me the line about how she's not going to start college wearing diapers. Is it some kind of law that you have to use that line whenever the subject of potty training comes up?

That's just one small area where I'm letting us all off the hook. The bigger, more important thing is that in some ways knowing she is on the spectrum lets us all be a little kinder to each other, to hold back from sniping except when we are super duper extra sleep-deprived, to not force ourselves to hold her to some standard she can't meet and then hate ourselves for punishing her in the name of creating boundaries.

She can't help it that she's literally bouncing off the walls, and we're all a lot happier just putting her on a trampoline for a little while when she's driving us insane instead of trying to reprimand the autism out of her.

After L.'s assessment, the psychologist recommended that we switch preschools. The school she was in is very highly-regarded. It's got all kinds of fancy accreditations, a long waiting list, low teacher turnover, developmentally-appropriate non-branded toys -- you name it. The school operates under the idea that a child-led curriculum is best for preschoolers, that the teachers should set up activities and a schedule and pretty much get out of the way and let the kids dictate the rest.

Which is great and fabulous and fine if your kid is developing normally. Sorry, typically (we don't use "normal" anymore. I also got in trouble with the psychologist for using "good" and "bad.") If your kid is not neuro-typical, as they call it, this is kind of a disaster. While Caitlynn and Jackson are off building forts or playing dressup or whatever, Lucy was sitting in a corner, trying on a shoe for 45 minutes. Putting it on. Taking it off. Turning it over and around. Putting it on her head. And no one would step in and redirect her, because that's not what they do. It's child-led.

So, we agreed that it was time for a change. Did the psychologist have a recommendation for a new school that might still have a slot open for her in December? Why yes she did. Now, it's not too fancy, she told us. It's kind of, um, messy, she added. I went to go check it out, and this is where you kind of have to go on faith that the woman you just wrote a really huge check to to tell you what your daughter needs, might actually know what she's talking about. Because this school is a trip. It's like a one room schoolhouse, yet set in the middle of mansions and rolling hills in what must be one of the wealthiest areas I've ever driven through. But the school itself is like the size of our living room. And filled to the brim with more crap than even our garage. The director should shut it down and sell all her original Lincoln Logs and Bristle Blocks on ebay, because she would make a fortune. And it seems to be run by Carnies. That's what runs through my mind every time I go there.

But they are Carnies who can get through to kids when developmental play-based preschools just don't cut it anymore. These two crazy women have a great track record teaching social skills to kids who can't figure it out on their own, and these ladies are totally non-intimidated by L. and all her issues. They'e like -- "Eh, she's nothing. Give me a real challenge." I am filled with doubts every time I drop L. off, and wonder if it was smart to put so many of our eggs in this strangely cluttered basket that also has a TV in the corner (tell me a preschool you've visited lately that has a TV in the corner.) But when no one else will promise me that she will be fine, they do. All the time. Like it never would occur to them for things not to work out for her. They are so unimpressed with her weirdness, and that makes me love them even as I think they are so strange. I love our new Carnie school.

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.

Will took Lucy back to the "christmas light store" (as Lowe's is now known in our house) today to get the rest of the lights needed to finish the job. They came back with two items:

1) A tiny Santa hat, for the Halloween bat still hanging from the Magnolia tree in our front yard. He is now referred to as Santa Bat.

2) A light-up lawn Reindeer

And we're not even the tackiest house on the block.

Life has been too busy lately to stop and document it for posterity. I'll fill in the gaps at a later date.

We're in the thick of Christmas here. The tree is up, the stockings are hung (well, not Tessa's, because she doesn't have one yet. Poor, sad, second child.) The Christmas decorations seem to be spawning like bunnies. I used to be able to blame all the tschotkes (sp?) on my mother in law, who would send miniature dancing ice skater candle holders and the like, but this year I am entirely to blame for the hanging Santa advent calendar and the Happy Holidays welcome mat. Lucy dictated our outdoor holiday decor. I tried to steer her towards tasteful white lights, or maybe the kind of cool retro larger color lights. But she was having none of it.

"I want yellow and pink and red and green and purple and orange and red and pink lights," she announced last night, so off she went to Lowe's today with her father to pick out a sufficiently gaudy lighting scheme. Her father says he tried to steer her towards the larger ones that I like but she told him she wanted small ones. "Little ones, because I'm little." How could he resist such cuteness?

I'm not sure I'm completely buying that story, though. I think it maybe my Catholic husband's way of getting me back for telling her that on Christmas we celebrate the miracle of the oil lasting for 8 nights.