Crazy-makers

Cale has been selected for a Medicaid Waiver!!!!  YEAH!!!!!!!!  IT’S ABOUT GOD DAMNED TIME!!!!  THAT SOUNDS UNGRATEFUL!!!!  WHAT I MEAN IS - THANK YOU, THANK YOU, THANK YOU, THANK YOU, THANK YOU!!!!  And things have been so very good around here.

We’ve gotten nearly all of Cale’s therapies set up already, and, between this and his medication (that we no longer have to worry ourselves sick about how we’re going to pay for) Cale has almost completely stopped hitting us and kicking us and destroying our house.  Not only that, but I believe that I have probably found the single best speech therapist on the whole face of the entire planet.  Cale is imitating words (and songs and phrases) again already!!  And I cannot even begin describe to you how magnificent it’s been to hear.

The wait for the Medicaid Waiver (particularly this past summer) nearly landed Cale in a group home.  But that’s all over with now, and the only damage remaining is that I still have one chipped front tooth.  I should be able to get that fixed soon though.

I’m afraid that I’ve been so busy lately with all of the paperwork, and with all of the meetings with our caseworker (who’s been an absolutely fantastic advocate for us), and with all of the running Isabel AND Cale BOTH (finally!) to all of their therapy appointments (we’re back to four different therapies per week EACH – that’s a total of eight therapy appointments per week, just in case you couldn’t do the math yourself - my husband has been telling me lately that I’m a tad too explanatory in my writing – Shane is my most adorable crazy maker, although there are a few others around here that are pretty cute too), that I haven’t had much time at all for writing.  And, what little time I have had for it, I’ve been working on my book instead of updating my blog.  So I thought that I should give the blog a quick update here on this gorgeous, snowy afternoon.

It seems like anytime I start working seriously on my book, I’m interrupted.  This week, for example, after an entire week straight of daily interruptions - two appointments with the psychiatrist, three appointments with the therapists (so far), one meeting with our state caseworker, and one half day of school (and I can’t seem to get any writing whatsoever done while my kids are at home) – I had finally gotten everybody off to what was supposed to be a full day of school, and I didn’t have to take anybody to any therapy appointments until later in the afternoon.  Therefore, I had an entire, uninterrupted school day in which to write.

It was around 10am when I got the call, and I had only been compiling stuff for about an hour.  By “compiling stuff,” I mean that I actually have an obnoxious amount of material already.  And this has been a bit of a surprise.  Somebody asked me once, fairly recently, how many chapters I have written for my book, and I answered that I only have the first three chapters written.  But the truth, I’ve discovered, is that I have literally hundreds of pages already.  And I discovered this because when I told another friend of mine, very recently, that I really needed to get working on my book again, she said, “Oh, you’re already writing a book.  You just don’t know it yet.”

She was talking about my blog, I think.  And this got me wondering if she might be right.  There’s a ton of material in the blog about my kids, but I also have a bunch of material that isn’t in the blog, material that I’ve been “processing” in spurts here and there as things have been coming back to me over the past couple of years.  And, between the two, I’d bet that I have roughly half of a coherent story already.

It’s kind of disgusting, when you think about it, that I’ve spent so much time writing about myself and my own life.  But this kind of thinking is a trap, I think.  I tend to tell myself that nobody’s going to care.  “Who do you think you are anyway, that anybody would want to read a book about your life?” is what my “inner voice” likes to say.  But this is just ego in reverse – rather than thinking that everybody’s going to care, thinking that nobody’s going to care.  It’s still extreme self-centeredness, while the truth is probably actually somewhere in the middle.  Some people might care, and others might not.  Therefore, I really try to respond to this “inner voice” with, “Hey, if nobody cares, then nobody has to read it.”

I don’t write in this blog so that it can be read, and I’m not writing a book so that it can be read.  Don’t get me wrong, I get really happy when I check the counter on this blog.  I had to stop doing it, in fact, because my head was getting too big.  And I would be equally as happy if my book (when it’s finished) was read too, especially if somebody could actually get something out of it.  But that’s not really why I’m doing it. 

You see, I’ve never had any kind of a dream about being a writer.  My dream was to be a painter.  I even went to college for this and, since I turned out to be a relatively mediocre painter, ended up with an education degree so as to actually be able to do something with my knowledge of Art.  And, as it turned out, I was much more gifted at dealing with “behaviorally challenged” kids than I ever was as an artist.

I was a high-school Art teacher until my career was uprooted by my children with Autism, whom no day care center, rightfully, in the entire city of Phoenix, Arizona, was willing to take care of (my kids couldn’t even make it through an hour in the babysitting room at the gym before getting kicked out).  And this was how I became a stay at home mom.  It had literally never even occurred to me be a writer, instead of a painter, until I had kids who, were they ever allowed anywhere near paint, destroyed the carpeting with it.  But I found that I had to have a creative outlet of some kind (and a very tidy one), so I started writing.

I was a mediocre artist, so there’s nothing to say that my writing is, or will be, any better.  But, then again, that’s not really the point, is it?  The point is that I have had Autism in my life since the day my brother was born (since I was a year and a half old), and our story (about our growing up, and about the lives of my own children) is a story worth telling.  So, even though I may be telling it to God, and God alone, I’m still going to be telling it.  I like to think of it as my own, personal little gift back to God, since he’s always done so much for me.  And I realize that this probably sounds perfectly cheesy, but I can’t really say that I care.  I mean, my baby is getting therapy again, getting nearly all of his little needs met.  Therefore, God absolutely deserves some of my time.   

It’s all sort of “Frank McCourt – esque” so far.  By that I mean that it’s all still gorgeously tragic, and I suspect that some of it will probably have to stay that way.  But this has presented me with a fairly serious problem, one that’s been quite a little road block for some time now.  It’s been hard for me to write about my brother.

I haven’t known how my brother would feel about being written about.  That’s why I haven’t put much about him in the blog.  Well, that and the fact that the blog is called The Spears Family Project, and my brother isn’t a Spears.  But there are others, too, whose feelings I’m concerned about.  I mean, how would you feel if you were written about in a non-fiction story, without your permission?  It might be grounds for the immediate dismissal of any kind of relationship with the writer, don’t you think?  So, even though I’ve already been writing about my brother (and a few other people) for some time now, I haven’t shared any of this material.  And, until recently, I haven’t been sure that I ever would.

I know that, from a literary standpoint, you’re not really supposed to ask a person’s permission before you write about them, because it may exact an influence on what you’re willing to say.  But I had to ask my brother’s permission.  Everyone else in the story is probably just going to have to live with it, but my brother, since quite a large chunk of the beginning of the story is about him, needed to be asked.  And the funniest thing happened when I asked him.

You see, my brother has high-functioning Autism (which, thirty five years ago, while the proper diagnostic tools weren’t yet readily available, went left undiagnosed).  I had completely forgotten that the only people on the planet that my brother really cares all that much about is me, my parents and grandma, and a few of the people that we went to camp with in the summers when we were kids.  So, when I told him about all of the stuff that I had already written about, but hadn’t yet shared with anyone because he was actually diagnosed with PTSD at one point because of some of it, he said to me, “I think you should just write it all, and get it published if you can.  And I don’t think you should care what anyone thinks.”

So the book is on.  I’m more excited about it than I’ve ever been before, to the point that I’ve been working on it for at least a little while every day no matter what, and to the point that I actually became rather irritated when the school nurse called me at 10am, after I’d finally gotten everybody off to full day of school and was left with whole, uninterrupted school day in which to write, to tell me that Isabel had head lice.   

“WHAT?!!!!” I yelled.

Now, I can handle a lot of things.  I can handle screaming and head banging and shattered glass and poop smeared on the walls.  But tiny, parasitic head bugs?  Sorry.

“SHAAANE!!”

He did the shampoo treatments on everyone in the family (well, I did his) even though Isabel was the only one with an infestation, while I washed and steam cleaned everything single thing in the entire house.  It ate up the whole day - stupid little parasitic crazy makers.  But, oh well.  I guess I’ll just keep trying.  Oh, and here’s a little tip – about fifteen drops of tea tree oil in the bottle of shampoo that your child uses daily, will forever prevent head lice no matter who, or what, your child is around.  NOW they tell me.