Saturday, August 31, 2013

We're All Fine

Friday night. Camille is lying on our bed alternating between high pitched baby talk to Jude and excited too fast words about Minecraft to H and I. As usual, Camille is waking up just as the rest of us are going to sleep. I had been talking to H about why "the post formerly known as do we diagnosis Camille or not" was such a failure. Turning to Camille, who has paused for a second to snuggle into Jude's belly, I ask "Do you want to go to a Dr. to see if you have Asperger's?"

It's a moment because for all of my talk about allowing our children to be movers in their education, etc, I'd never really asked Camille how she feels about this issue. We have talked to her about Asperger's. When I picked up The Strange Incident of the Dog In the Night, Camille began to read it, and when I asked her if she felt like she acted like the boy she answered "Well yes except that I am not good at Math." (which is nto true, she's very good at Math). Lately Camille has been listening to our conversations about disabilities, and she has had her own commentary to add to the mental notebook H and I create as we think and debate through our ideas. And of course her thoughts are remarkably right on and very frequently more insightful than many of the adults I've read. But it's never come up whether or not she sees herself as having a disability, or whether or not she wishes she had a diagnosis. 

For the last 8 eight years, I've struggled with whether or not we should push for a diagnosis for Camille. I have always suspected that she might have something like Autism or Asperger's (I didn't EVEN KNOW what Asperger was until she was five and I meet our friends who have a son diagnosed with Asperger's). Initially, it was a struggle to get anything because her Dr. acted like I was pushing for drugs (which I wasn't for the record) and he told us "I don't think she has Asperger's because she shook my hand and looked me in the eyes. She's just quirky and in your family that's likely going to be okay." And I let it go because it was really really hard to push for a psychological evaluation if your family Dr. didn't recommend one. I wasn't sure if I fully agreed with the Dr. because while yeah she was quirky and that was totally okay in our world there were other things that just went beyond quirky. 

The tantrums, the social anxiety aka never wanting to leave the house and having meltdowns when we did, lack of social skills that were at the time rather painful for her, insomnia, OCD, texture sensitivities. These were things that were effecting her quality of life and seemed to me to be a bit beyond the quirky diagnosis handed to us.

But I doubted myself. There was a lot of talk at the time about how parents were trying to push diagnosis on their kids when their kids were just being kids. I admit that I started to worry that I was doing this...that perhaps I was hoping for some easy answer that would explain Camille to me. 

Meanwhile, we just kept living. We had started to home school again which made life much easier in many ways for Camille. After a few months of trying to force Camille to make friends, I stopped. I allowed her to sit in the van and read on park days, and I didn't pressure her to meet people when she got out to walk. That helped ease the meltdowns that often accompanied us leaving the house. We already kind of unschooled which gave Camille the freedom to pursue what interested her in as much (yes yes sometimes obsessive) detail as she wished. Insomnia wasn't too big of an issue since we didn't go to school so we could sleep as long as we wanted (and since I have insomnia Camille and I are often up together). We even worked with the OCD which seems to be worst when things are making Camille anxious. We've learned to schedule a little bit more time before we leave so Camille can perform her leaving the house ritual. And when things are really bad with the OCD, I know we need to sit down and chat about what's going on to worry her.

Yes, we are a quirky household but it really does work. We all have our things. I'm ADHD so we have to accommodate for this. We have to work around Umberto's med schedule. We have Jude's therapy, and perhaps some day other issues. Piper has anxiety attacks. R is a toddler. H has his shit too. We have all just learned to flow with the things that make up who we are. There are times when it's clear we need outside help and we seek it as it comes up. But a lot of times, I feel like we've learned to deal with things by just seeing them as normal as okay. We don't think Camille needs to be any more fixed than the rest of us need to be fixed. Camille is just Camille and yeah sometimes we all roll our eyes as we are waiting in the van for her to finish washing her hands but it's NOT weird to us. It's just life.

Lately, or if I'm fully honest since we got such a clear diagnosis of Jude, I find myself rethinking if we should be getting a diagnosis for Camille. If she needs therapy or wants meds for her OCD. I feel sometimes if I state that we are dealing with multiple disabilities I'm being a poser. Because I only know for sure that two of my children have something the world calls a disability. I don't know with Camille. I have my suspicions, and since I've finally found some great blogs about Autism, I've been reading more and seeing more of what I read happening with Camille. And of course I worry that she'll be upset someday that we didn't do more.

Thus on Friday night, I am sitting across from Camille asking her, for the first time, if she wants an official diagnosis. "No. I'm fine," she says, and goes back to telling us about her Minecraft experiences. Camille doesn't see herself as having a disability but then she doesn't see her siblings as having a disability either. As she says "They're normal to me." When pushed Camille doesn't seem to making distinctions between and abled/disabled. I am not sure how to read this because while it's clear she does see difference, she doesn't seem to regard that as problematic.

For now we will keep on as we have been. Camille is happy with her life as is, and that is a good enough place for me to be in. For the last few months, I have felt conflicted about  my blog being only about Down syndrome. I got caught up in watching my numbers climb and when they didn't I would feel depressed. The problem was that my numbers only climbed when I wrote about Down syndrome (and even then I wasn't going viral or anything). I was becoming known as a "Down syndrome" blog. I woke up to the yuckiness I had become a few weeks ago. I was staring to think of my family as something to sell aka what makes my blog unique? What is about us that could set my blog apart from the other blogs? Because that would drive readership right? Part of that realization came from thinking about Camille and about her diagnosis. If I was going to "sell us" I couldn't do it based on a gut feeling right? I realized quickly enough that the thought of selling us made me feel kind of ill. Up until this point I had covered my desire to feel valued (because it's always been about feeling valued not really about making money) with this idea that I was going doing something important and good in the world aka writing about disability. My insecurity strikes again. I had come to realize that I would end compromising what this blog has always been for me and for my few loyal readers. I wasn't willing to do this for fame, recognition, etc.

This blog has always been about my family, my life. It has not never been a niche blog and that's always been okay. My blog is not big, and it's not likely to get big. I'm never going to have the readership of say "The Bloggess" and that's okay (for the record, I adore her, and she is one of the few big bloggers who I feel totally deserves her fame). Like my family, this is blog just is. I write about all kinds of shit, put up pictures, rantings, musings, and often too much text for most people to read through. My blog is not a Down syndrome blog, not a Asperger's blog, not a Epilepsy blog, nor a disability blog. It's just a blog about one kick ass family doing the best we can in the world. And like Camille "It's fine." We're all fine. 


Down Wit Dat said...

Quirks, tears, meltdowns, snuggles and farts. I love them all.

Myria said...

I don't know if this is helpful to you - I was informally diagnosed as autistic when I was little (formally diagnosed as an adult), but grew up mostly unaware of it. I was homeschooled until high school and like you, my mother was able to adjust for me. Of all my autistic friends, my life has been the most balanced. A diagnosis is helpful but as for doing something different - mama, keep doing what you're doing because it sounds like you all are awesome.