What you keep is the getting there

Some time ago I wrote that I had come to realize that in my subconscious mind there was always an after-autism. In this after-autism time we would look back and laugh at how much we worried. No, don't get me wrong. I knew from the start that autism is a way of being. A life-long way of being. There's no curing that. There's no changing that. But somehow in my magical way of thinking, there was to come a time when autism wouldn't hog center stage quite so much. When I held this thinking up to the light I saw a vision of Nik and me, sitting -- no, lounging, in the Adirondack chairs on the back patio. This was way off in the future because these weren't the crappy plastic chairs that we have now but the real deal wooden ones. And also, we don't have a back patio. (That is on the ten year plan and we are now only in year nine.)  But besides that, Nik and I were holding a long, cool tea and were deep in conversation. Also, there were no children nearby. And while there was nothing explicit about this vision that would tell me, I knew that the children were off doing their own thing. And that everything was alright.

If I could have imagined what those older versions of us were talking about it might have been some version of a conversation that we have from time to time. "Remember the 'Year of the Poop?'" or: "Do you remember when Oliver woke up screaming at 6am every morning for a year?" one of us will ask the other. The other sort of replies with a slow shake of the head and an exhaled laugh that pretty much says: Nobody would believe it if we told them and I'm sure glad that is over. Because at the time it felt like it might never end.

The part of the vision that I like to think about is how utterly relaxed Nik and I seem to be. Our faces are without worry. We look well rested. Turns out, I think, that Oliver is inside the house. Maybe he is on his bed reading a book. The point is, I don't appear to be worried about him even though I cannot see what he is doing. Everything is just alright.

The problem with magical thinking though is that it won't get you anywhere. Nowhere in that little vision is there a clue as to how we got there. And I don't really believe in magic.

I've been in a bit of a depression lately. It's pretty standard fare really in terms of a depression. I can't seem to focus. All I want to do is sleep. I've lost interest in things that I used to enjoy. I put off doing things I should be doing and absentmindedly surf the web. And did I mention the great, great, overwhelming desire to sleep? Oh, yeah right -- that part is normal for me.

But maybe in my depressed and sleep deprived state I'm overly susceptible to suggestion because today I was watching a music documentary and one of the old time musicians said something like:  "Enjoy life. You only come by this way but once." And I found myself annoyed at how wasteful I have been with mine lately. I don't know exactly how the things I'm worried about right now are all going to turn out in the end. But maybe it isn't the ending part that really matters.

This afternoon I found myself drawn to the kitchen. I wanted to cook something but there wasn't much by way of ingredients. Cooking was one of those things I had kind of lost interest in. But, aha! A bag of lentils and a butternut squash. Onions. Rice. As I pulled together a pot of soup I thought about the conversation that Nik and I will have one day when we sit on those real deal chairs on the back patio. It's the worries of today that we'll be shaking our heads over by that time. New ones, different ones will probably replace them. But by then maybe we'll just have the good sense to know that those worries will also be replaced one day.

Not too long ago Mom-NOS asked readers to post the name of a song that represented them. I chose "To Live is to Fly" by Townes Van Zandt  - a song that I've listened to quite a bit this year. The lyrics kept coming into my head as I wrote this post tonight:

Days up and down they come
Like rain on a conga drum
Forget most, remember some
But don't turn none away
Everything is not enough
Nothin' is to much to bear
Where you been is good and gone
All you keep is the gettin' there
To live is to fly
Low and high
So shake the dust off of your wings
And the sleep out of your eyes

(and because Gretchen found TVZ's version depressing I'm linking to the Steve Earle's version :-)

Why I could be re-painting my kitchen but probably won't.

When Mom-NOS posted that her New Year's resolution was to post every day in January I thought to myself: Hmmm. What a great idea! I should do that. I need a blogging kick in the butt. But I hedged a bit and decided that I wouldn't say it out loud. That way, I thought, I can change my mind and not have to make excuses. And so I did. Change my mind, I mean. Like on January 2nd. But I at least thought about posting everyday. ... Maybe I'll try February instead. Yeah, February with only 28 days sounds a bit more manageable. It isn't a leap year, is it?

OK, so to catch you up a bit on the sleep thing -- because I know how much my sleep means to you -- we may have found a solution, Houston!  After I last posted about starting Oliver on Clonidine, we had a few good nights here and there, sometimes they were even strung together in a row, but we continued to struggle with night wakings two, three and even four nights during the week. I had just about decided to give up on the whole thing. The anxiety that comes along with experimenting with a medication just didn't seem worth it if we weren't getting consistent sleep. But last week we again met with the neurologist who suggested changing the dose once more because we were giving him less than half the allowable amount for a kid weighing 70lbs (yes, my guy has weighed 70lbs for a year!!).  Either that has done the trick or we are in the midst of a longer-than usual, random good patch -- but last night marks the fourth night in a row of good sleep.  I don't know what to think but I am totally optimistic that this will be the solution for us. I am desperately optimistic. So keep your fingers crossed for us, will you?

The weird part about getting so much sleep is that I find myself with so much time and energy that I don't know what to do with myself. And this after only four days of solid sleep. That could mean trouble. Nik saw me gazing at the kitchen walls last night and cautioned me not to try and renovate anything! Drats! So while I won't be renovating anything and I won't be promising something crazy like posting everyday, I might still manage to show up here more often.

May the sleep be with you!!!

Gravity Pulls You In

I'm a bit of a luddite when it comes to technology. I might just be the only person left on the face of the earth who has never carried a cell phone. I just recently threw out the last of my old cassette tapes and switched over to an MP3 player. I have never even seen an instant message and the chat feature on facebook scares me. But I will admit to you that I do, frequently, turn to the Internet to find information and connect with people.

My internet activity is mostly spurred by autism-related need. There is good and bad in this. It isn't just about the sheer amount of information out there, though that can certainly be daunting. But having access to that information requires that we act as our own filter. If we aren't very good at critical thinking already, we must become so. Not all research is good research. What questions are being asked? Are these the right questions? Not all opinions, no matter how persuasively stated, are worth my time and attention.

Probably like most of you with children on the spectrum who might be reading this, I spent my fair share of time at Google University that first year post-diagnosis. But I was raw and vulnerable and I wasn't very good at using my filters. When I look back on that time now I still get angry about all the crap I had to work my way through. Especially I am pointing my fingers at the popular media portrayal of autism. Reading story after story of autism horror and pain and sorrow and tragedy made me feel as though I was about to drop over the edge of a cliff with my beautiful boy in my arms.

Eventually I managed to find my way. It all started by reading a blog (Kristina Chew's old MSHA blog) and seeing that there was another way to look at it all. From there I connected with a group of mothers and writers who were also finding their way. Mothers who weren't willing to accept the life of pain and sorrow that the newspaper and magazine articles were sentencing us to. If I was ready to drop off the edge of a cliff these other mothers threw me the lifeline. I will forever be grateful and inspired by these women and their families.

Now, Kyra Anderson and Vicki Forman -- two of my favorite writers -- have crafted Gravity Pulls You in: Perspectives on Parenting a Child on the Autism Spectrum. The blurb about the book at BiggerBooks says: Each piece has been included because, as the editors requested, it offers a perspective that avoids "the image of the parent feverishly scraping the autism out of her child or serenely offering up platitudes about life's roses among the thorns of hardship." Gravity Pulls You In gives voice to what's hard about raising a child with ASD without feeding the stereotype of the devastation of autism. There are stories of discovery and enlightenment, of perseverance and humor that forge a deeper connection among parents by broadening the perspective on autism and attempting to dismantle the fear.

Now that's what we need more of, isn't is? Words that validate, inspire and enlighten. Because words have that power, don't they? We each have that power and thanks to Kyra and Vicky, maybe the right kind of words will find their way to other parents who feel themselves standing at the edge of that cliff and needing something to hold on to.

I'm excited that one of my essays is included in the book. Having not read the book in its entirety though, I'm even more excited to read the rest of it when it is released in February. Because after all, who can't use a few words that validate, inspire and enlighten every now and then?