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.”
