Temporary

"Contentment and well-being at once become possible the moment you cease to act with them in view"

 -Chuang Tzu

I've been thinking a lot this week about the temporary nature of things.  We spent part of this summer in Montana where it was cool and green outside, and where we were able to spend lots of time with family and friends.  Upon returning to our house in Arizona, I became conscious of a deep sense of isolation.  Our big, beautiful house here just feels so incredibly empty, whereas the crappy little house we stayed in in Montana was always teaming with life.   

We're currently without respite care, which is a regular problem for us.  And Shane's parents, along with my dad (the only family members we have down here), are all gone until the end of October (they're all gone for seven months out of every year).

We've been back from Montana for two weeks already, and school doesn't start for another three.  It's too hot to spend time outside.  Even if we could withstand the air temperature, the playground equipment at the park could probably be used to fry an egg.  And Cale, with all of his constant screaming, makes it impossible to attend the indoor "kid" activities at the libraries and museums.  So we're literally stuck in the house together twenty four hours a day, seven days a week.  And we're really feeling the isolation and boredom that accompanies us being in Arizona this time of year. 

We have some friends that live near us.  And, in fact, they're some of my very favorite people to hang out with.  But most of their children are raised, for the most part, and they like to go out and do things.  It's hard for us to go out of our house and see them because our kids are so difficult.  And I don't feel that they particularly enjoy being trapped at our house all the time.  So I'm afraid that we just don't see them very often any more.     

We'd like to move back to Montana (we decide this every summer), or, at the very least, move across town to the other side of Phoenix where we have more friends that want to hang out with us and our kids.  And, for the last few weeks, I've been just sure that one of these two things would be the solution to our loneliness.

It's funny.  About the time I think I have a working plan in progress, one that will bring us contentment and well-being, things change.  We've just found out that our best friends in Montana (a part of the life that our Montana house teamed with) are going to be moving away.  I can't say that this has seriously dampened that "plan," but it has dampened my enthusiasm for it.  So I've been making the effort to go across town here several times a week to spend time with my friends over there.  And it's been awesome.  So awesome in fact that I've thought that I might actually want to stay.  However, I realize now, that I hadn't actually tried taking my kids over there yet.

Several days ago, some dear friends of mine from over there invited us to a potluck that they were having this afternoon.  I told them we probably couldn't come because of Cale.  He makes things really hard and we'd just as soon have people over to our house rather than try to take him out someplace.  However, since they don't live over here and they can't come to our house very often, they really tried to talk me into bringing my kids and coming to their potluck anyway.

I told Shane that we should go.  It was an hour away (and half a tank of gas to get there and back), but there was going to be food and kids and a pool.  And we were all in desperate need of doing something fun.  He was hesitant of course.  Because we usually don't go and do things like this with our kids.  But our sense of loneliness and boredom had become so intense that we actually made the brutal mistake of thinking that it couldn't possibly be worse to go out than it was to stay in.  We thought that this time it was going to be different.  So we decided to give it a try.

We were in the car for an hour and a half (road construction coupled with getting lost) before we finally got there.  Once there, we found so many people in the back yard and in the house that it took us fifteen minutes to get to the bathroom.  When we finally had our swim suits on, we went out to the pool.

Cale screamed his high-pitched, ear-drum-splitting scream (at which everyone in the back yard cringed and stared) until we found him a cup and gave it to him.  FINALLY we all got into the pool, Cale started pouring water with his cup, and everyone was happy.  So I began to relax.  And I actually thought to myself, "WHEW!  Thank God it's over with."

My friends began commenting immediately about Cale's scream, "Wow.  WOW.  He's got some lungs on him.  That is really high-pitched and loud."

"Yeah," I replied with a sigh, "It's actually damaged my hearing."  

"I'll bet," they said, "That's really something."

Realizing that these particular friends of mine had never spent much time with Cale, I couldn't help but say, "He screams all the time.  And if he doesn't start talking by the time he turns five, I'm going to talk to a veterinarian about having his vocal cords clipped.  You know?  Like they do to those yappy little dogs?  Then when he opens his mouth and screams, no sound will come out."

Yes.  I actually said that.  Luckily, they thought it was hilarious.

We were told that all the kids should stay outside of the house because they were going to be visiting in the house (and they needed it to be as quiet as possible).  And that would've been fine except that we were only in the pool for about fifteen minutes before a thunderstorm started up.  At that point, the house owners ordered everyone out of the water.

Alden cried and cried and cried.  Isabel cried and cried and cried.  And Cale?  Cale screamed and screamed and screamed.  And I really didn't know what to do.  The idea of having to stay outside with the kids in a thunderstorm for God knows how long, with them not being able to be in the pool (Cale's obsessed with swimming pools), was horrible.  It would mean that for the next hour (or longer) I'd have to chase Cale away from the water, with him tantruming profusely the entire time.  The other option was to go inside and try to make Cale be quiet.  Can you actually hear me laughing out loud about that one?

As I stood there trying to figure out our options, Cale ripped his shorts and swim diaper off right in front of everyone and ran, screaming, into the grass and through a pile of dog shit.  I grabbed him and a towel and laid him down on it, fumbling through my bag to find baby wipes and clothes.  As I did so, he kicked me repeatedly as hard as he could in the throat, chest, arms and legs, with his dog shit covered feet, all while screaming at the top of his lungs.  Just then I looked up and saw the entire back yard full of people staring at me.  You see?  Not only was he piercing their ear drums, but I was still wet with pool water.  So as the dog shit met my skin it turned into brown, oozing liquid which, I noticed as I looked down at myself, was dripping down over my entire body in thick, steady streams.

And I remembered, "Ohhh, that's right.  We don't do things like this."


We left immediately.  Obviously.  I couldn't even take my wet swimming suit off or get cleaned up first because I couldn't bare the thought of a fifteen minute battle for the bathroom, trying to scoot my dog shit covered body in between the people inside while my son shattered their eardrums (if you think it's loud listening to it outside, you should try listening to it inside).

We were there for just over half an hour.  But the entire process took over three.  Shane and I worked our asses off to provide some "fun," we were exhausted by the time we all got back into the car, and our children were more upset than they had been in a very long time.  And, you know?  Suddenly I wasn't that excited about moving over there either.

As we got onto the freeway to begin the long drive home, I have to tell you that, for a moment, I felt really really sad.  And it made me think about all these terrible things, all at once, things that break my heart.  I thought about the mother who let her Autistic son drown in their pool in Phoenix here last year.  And about the Phoenix man who put his Autistic son in the car with him and drove off a cliff last year.  And about the woman in New York who'd been waiting for respite care for nine years, who finally finished waiting and shot her Autistic son and then herself.  These are just the recent instances I've heard about at support group.  Who knows how many there actually are.  This isn't just some little inconvenience for people.  This is life and death stuff sometimes.  And God I wish I could help.  I wish with all of my wishes that I could make things better for Autism parents.  But I can barely make things better for my own family.  Oh God, my powerlessness sunk straight to the bottom of my stomach.  And I began to cry.

As I sat back in the seat of our mini-van, just short of full blown sobs, I noticed that I was freezing cold from the air conditioning blowing on my still wet swim suit.  And just then we must've rounded a bend because the bright sun poured in through the window, warming my skin instantly and drying the dog shit all over my body into an invisible, sticky film.  And it made me laugh.  

You know?  The Buddha lived a completely sheltered and wealthy life until adulthood, upon which he came out into the world and discovered sickness and poverty.  He was so disturbed by the things he saw that he went into a quiet cave and meditated for six years straight (a quiet cave sounds so awesome to me, I think that's why I remember this story), after which he came out and announced to the world that the nature of everything is temporary.

My son's Autism, and all the things that accompany that, seriously disrupts the life of our family.  But it's temporary in that it's not going to last forever.  Our whole family, in fact, is temporary.  Time spent with specific friends is definitely temporary.  And the places we live are temporary.  Thinking about all that makes me want to appreciate things instead of being upset that they don't go the way I think they should, or that they always eventually change or end.  It also makes me appreciate my family, and all of our thousand little idiosyncrasies, much, much more.

So why am I constantly trying to arrange our lives in certain ways?  So that we live someplace in particular?  Or so that we can hang on to particular friends?  Or even so that we can be less lonely?  What's so wrong, exactly, with being lonely?  Because, in the big scheme of things, that's temporary too.

It seems like the more I try to arrange, the more I try to hang on, the more the universe conspires against it.  So what would it hurt if I just let all of that go?  What would it hurt to spend just one little lifetime being with Cale?  And loving my family as much as if it was the last day I ever got to see them again?  And loving my friends in the same kind of way, whenever I see them, without worrying about hanging on. Wow.  That dried dog shit got me thinking about much, much better things.

When I got home I'd gotten an e-mail from one of our old summer camp friends.  He's moved to Arizona, and he wants to hook up somewhere in between where I live and he lives and meet my family.  Isn't that cool?  I think it's been around fifteen years since I've seen him and I'm definitely looking forward to spending a little time with him.  I'll be hiring a babysitter of course.  I'll bring my husband and a short stack of photographs of our kids for him to meet.  Because it'll be temporary, that's why.

Summer Vacation

It’s a warm evening in my home town of Billings, Montana, which is quite possibly the greenest place on earth for a little while each year. I had forgotten how tall the trees are here, and how green the grass gets during the month of June. It won’t last long. A month from now it will get hot, and the grass will dry out and turn yellowish brown unless watered aggressively by the people who own it. People will start to complain about the lack of rain and about their creeping water bills. And I’ll remind them of how often it rains where I live in Arizona, where people plant gravel instead of grass, rolling hills of what looks like pink, glistening cat litter instead of lawns.

Listen to me, talking like I’ll be here in a month. A month from now I’ll be back in Arizona actually, staring gluttonously at the tiny oval of green grass in my front yard, a reminder of home if I don’t look too far out the corners of my eyes, and longing for the miles of watered green in Montana.

Cale’s in the bathtub for the fifth time today, pouring water from one cup into another and back again, and screaming periodically because the water didn’t pour the exact same way as it did the time before. He’s using disposable, plastic cups, one of which has been bent slightly and is messing up his whole bathing experience. He could give a crap about the grass.

I went through weeks of anxiety before coming here, wondering exactly how selfish it was to consider stopping all of the therapy/support for a six week break in my home town. Since Isabel and Cale’s therapies are funded by the state of Arizona, they don’t get any while we’re in Montana. We also don’t get respite care while we’re in Montana, and since Cale makes doing the most basic things, like going outside, incredibly difficult, we have to rely solely on friends and family for help. All the way around, the decision felt selfish. But Shane and I were both in so much need of a strong dose of friends, family, and green, that we decided to come anyway.

Being home again has been nothing short of a little adventure. We’re renting a little house from my mom while we’re here, and it didn’t take Cale more than a couple days to figure out how to escape from it. At my house in Arizona, I have locks up high on all of my doors. But I didn’t want to put holes in my mom’s doors here, so I bought those door knob snap things instead. You know, the ones designed to keep toddlers from being able to turn the door knob? Well, I should’ve realized that, physically, Cale’s not a toddler anymore. He’s almost five. And while he certainly seems to have the brain of an eighteen month old, he has all of the physical coordination of any five year old. So rather than attempting to turn the door knob, he simply broke the snap thing off.

It was early in the morning. Shane, who gets up at the butt crack of dawn every day, was down in the basement working. My other two children either didn’t notice, or didn’t care, that Cale had escaped. And I was still asleep in the bedroom. No, I haven’t drank in years. I simply have a bad case of exhaustion, mainly due to my age and to having had screaming babies for the last eight years in a row, one of which has never grown, and will never grow, up. So I sleep in whenever I feel like it, and I’m often unsuccessful in feeling the slightest bit guilty about it.

I woke to the sound of banging on the front door. I sprung to, realized what was probably happening, and ran into the living room. An intense, pissed off, blond-haired neighbor lady was already in the living room, setting Cale down onto the floor. My other two kids were giggling at the nerve of their brother. And the lady looked at me, seemingly disgusted that she’d gotten me out of bed, and yelled, “He almost got hit by a car!!”

“So? What else is new?”

No, I didn’t actually say that. I only thought it really loudly.

“Oh, I’m sorry,” I said, “I haven’t had a chance yet, but I’ve been meaning to go around to the neighbors’ houses and let everyone know he’s Autistic.”

She looked at me with that blank stare, the kind that said she had no idea what that meant. I often wonder what people are thinking when they stare like that. Are they trying to recall twenty-five year old, vague, images of the “Rainman?” What possible reference could a regular person have? How could they possibly know about the constant drama? Or about how regularly life-threatening situations occur? Or about how these two things in combination eventually burn a mother’s nerve endings down to useless little stumps, rendering them almost completely non-reactive? How could she have any idea what it’s like to live this way? And how could I really blame her for that?

“He doesn’t talk and doesn’t necessarily understand what you’re saying either,” I smiled and shrugged my shoulders, “And he escapes. A lot. So if you see him out, don’t bother trying to talk him out of the street. It’s okay to just grab him… like I’m guessing you just did. Umm. Thanks.”

If Montana’s CPS shows up, I’ll politely introduce them to Arizona’s DDD by phone. And, in the end, everyone will tell me what a good job I’m doing rather than providing us with any real help while we’re here. Whew. The sarcasm is thick tonight. Needless to say, there’s a lock on the door now. And it’s going to leave holes.

The last renters tore up my mom’s fence, which Shane is fixing slowly in between meetings for work. So I’ve had no way of containing Cale outside here, even though he’s become completely obsessed with getting outside. Every single time I’ve taken him outside, he’s run full force directly into the street, right in front of vehicles that seem completely unaware of the speed limit. I dropped my laptop onto the sidewalk the other day to save his life.

I could buy him a collar and dog chain, complete with one of those tiny metal, hang down tags with my phone number etched onto it. “When (not if) Lost, Please Call %$#-*&^%.” Hmm. Maybe I’ll put Shane’s number on it. I do have to wonder what the neighbor lady would think if she saw my son chained like a dog to a fence post in the front yard. It’s actually quite tempting to find out. It’s either that or let him get plucked off by a fast moving truck. Or the third option, which is banning him from going outside at all until Shane gets the fence fixed. I’m going with the third option for now.

He’s bored out of his mind in the house. He won’t play with toys, blocks, or puzzles. He won’t color or look at books. He doesn’t pretend play at all. He doesn’t even watch T.V. He doesn’t do any of the things that normal children do. Instead, he takes baths. And when he’s done with that, he walks around in little circles and screams. Non-stop. The consistency of the screaming has been unbelievable.

I’ve been considering going home early. But the problem with that is that it wouldn’t be any different there than it is here. While there’s fence at my house, he still wouldn’t be able to go outside because it’s 112 degrees out there. So I just keep reminding myself that this is what it’s like to live with my son while he’s out of school in the summertime, no matter where we are. Summer vacation is my version of Hell.

It’s been interesting to watch everyone try to help Cale. We’ve spent a lot of mornings at my best friend’s house, where there’s not only a fence but there’s a trampoline too. But he gets tired of jumping after half hour or so and starts back in with the stimming, screaming, stimming, screaming. So far, my friend’s six year old daughter has been the only one who’s been successful in temporarily pulling him out of his stimming, and getting him interested in one of her toys.

My grandma has bought Cale a bunch of toys, musical instruments, and flash cards, none of which he’s been the slightest bit interested in. And she keeps asking me for more activity ideas for him, which I’m afraid I’m about out of now.

Shane’s mom tried taking him to the park last week, but after chasing him repeatedly into the street with her replaced knee, she called and asked me to come get him. And she hasn’t offered to take him again. My eighty year old grandmother, God bless her, came over this morning and decided that he needed to get out for awhile. She tried to take him for a walk. I really should’ve known better than to allow this, but by that point I would’ve given my left leg for a ten minute break. So I let her, and they didn’t make it around the corner before he had her chasing him around in the street. She brought him back immediately.

After having spent some time with Cale again, my family has started calling every day and saying, “I’d like to take Alden and Isabel to the movies,” and “I’d to take Alden and Isabel to the toy store,” and “I’d like to keep Alden and Isabel over night,” and “Can I pick up Alden and Isabel and take them to the park? I’d take Cale too honey, but I can’t run very well anymore.”

Who can blame them? I don’t even want him right now, and I’m his mama.

So Alden and Isabel are having a spectacular time here, spending oodles of time with family and getting to do fun and interesting things every day, which is so much better for them than sitting around our house in Arizona with no family around, waiting for their brother to grow up so they can begin living their lives. And Shane, God bless him, has been spending all of his spare time on the fence. And so far, I’ve been spending the majority of my days alone in the house with the screamer. And wow. I hate him so bad right now.

A woman asked me, recently, if she could give a friend of hers my phone number. When I told her she could and asked her why, she told me that her friend has two Autistic children. She also told me that her friend said that none of her friends understand what it’s like to have two Autistic children.

My heart sunk when I heard those words, because what that really means is that the Autism mom herself is probably in a bad spot. I looked this Autism parent’s friend in the eyes right then, and I realized that she felt so bad and so defeated by this, that she was almost in tears just telling me about it. So I said to her very softly, “You know, you’re not there to understand it. It’s not your job to understand it. All you can do, in being her friend, is to share your own life experiences with her. Then she can take your experience, your help, and apply it to her own life. Or not.”

She understood what I was saying to her immediately, and it softened her eyes. Then I told her about some little ways she might be able to help her friend, one of which she was already doing just by thinking of her and getting my phone number. I told her she was already being a good friend, and this made her smile.

People can’t always help parents with their children with Autism directly, because they don’t always understand. Not only is each child with Autism different, but the things we do with them can be incredibly hard to explain. I often find myself doing things intuitively for my son, things I couldn’t explain if I tried. And there are times when nothing at all can be done for Cale at that moment, for a million reasons, and that must be as confusing and frustrating for my friends and family as it is for me at times. But, I have to say, that hasn’t stopped my friends and family from finding ways to help us anyway.

My best friend has loaned me her house, fence, and trampoline, almost every morning. My family members have taken Alden and Isabel to do something new, fun, and interesting every single day. And in the evenings, the neighbors let Alden and Isabel play in their yard with their kids. People have brought meals and more meals. And Shane’s got a little troop of helpers working on the fence this weekend. Even the crabby neighbor lady is watching out for my son. These things don’t go un-noticed. In fact, they make us feel loved. And that’s been worth every minute of being here. We’re absolutely surrounded with love, by people who don’t understand. But I can’t afford to let that stop them.

I’m still waiting for that poor Autism parent to call me, although I’m not sure what I’d tell her exactly. I’d probably tell her to let her poor friends off the hook. It’s been my experience that friends who stay near Autism parents are indispensable. I’d probably also tell her to take their love, even if it’s lasagna instead of understanding. And maybe I’d even give her my floaty, swishy, Zen answer, “While your son’s locked in the house screaming again, go outside and enjoy the grass while it’s green.”