I gave a talk a couple of weeks ago. And I won’t say where or why here, but I will
say that I talked about making peace with my worst fear.
At the time, I had no idea why I was talking about
this. I even thought to myself that
there had to be more important things I could be talking about. But this was where the talk had led, and I’ve
given enough talks to know better than to fight this sort of thing. I needed to just be going with the flow, so
that’s what I was doing.
My worst fear is an actual picture in my head. It’s a fear that, up until fairly recently,
absolutely drove the way I treated the people around me – the schools, the teachers,
the unending array of therapists, doctors, and psychiatrists, and even, on
occasion, my own husband.
It had managed to sneak its way into all of my relationships
actually, and I know this is because I’ve inventoried the hell out of the
subject for the past few years. I’ve
even gotten quite specific in the details of the fear itself. It has to do with my youngest son, Cale’s,
future. Cale is six and a half years old
right now, but in my “picture” of his future, he’s fifty years old and living
in an institution.
The bad part isn’t that Cale is a fifty year old man who’s
still non-verbal and in diapers because he has classic Autism. And the bad part isn’t that he’s living in an
institution. The bad part isn’t even
that there’s nobody there who loves him.
The bad part, for me, is that he doesn’t understand why there’s nobody there
who loves him.
His mom and dad have died of old age (his mom from lung
cancer because I never could, once and for all, kick the damn smoking habit),
and his brother and sister live far away and have their own lives, so they just
don’t get around to see him very often. And he doesn’t understand why his mom and dad
aren’t there. He doesn’t understand why
there’s nobody there who loves him, and he’s all alone. And for years and years and years yet, he’ll
be all alone.
That’s my worst fear.
I think I’ve maybe even talked about this in a blog post at some point
before.
One day, a woman that I admire very much said to meditate on
this fear. Well, what she actually said
was, “Go to the place that hurts and stay there. Don’t try to fix it or change it. Just be there.”
I practiced this for a couple of months before the miracle
finally happened, because I never could stay there for more than a couple of
minutes at a time. But finally, one day,
I was able to stay there for long enough to see what would actually happen
next.
Cale loves water. He
takes at least three baths every evening (and at least eight per day on the
weekends – our water bill is ridiculous).
Shane and I have often joked about this being Cale’s “meditation,” but I
had never really taken it literally before this. Cale has two cups in the bathtub with which
he pours the water back and forth. Sometimes
he does it for ten minutes at a time, and sometimes he does it for over an hour
at a time, all depending on how much “God time” he needs.
In my meditation, I saw Cale sitting in an institution
wondering where his parents were. I saw
him wondering why we had left him there.
I could actually see his confusion, could actually feel his
loneliness. This is usually where I stop
because I can’t take it anymore. But
this time, I was able to stay there for long enough to see him find a nurse,
take her hand, and lead her to a bathtub.
The nurse turned on the faucet for him. Then he got into the bathtub, his two cups in
tow, and started pouring. And that’s
when I actually went into the pouring water.
Now, what God looks like to me is a church camp that I went
to when I was younger. So that’s who and
what I saw in the water. But I understood
that what that meant was that Cale’s own God was in the water (Cale won’t ever
get to know what it’s like to go to church camps, or what it’s like to have friends
like that, or anything).
I understood that whatever God is to Cale is what’s inside
the water. But more importantly, I
understood that Cale will always have immediate access to God’s comfort and love
at any moment he ever wants it. He’s never going to be alone, and he’s never going to be unloved.
As I was talking about this, I could see this woman sitting in
the far back row. And I kept looking at
her because she was keeping perfect eye contact with me. Everyone else was about half passed out in their
chairs. No one was actually snoring out
loud yet, but some were close. This
woman was leaned forward in her chair, however, staring into my eyes, with
tears absolutely pouring out of hers.
Afterward she came up and thanked me for my talk. Then she told me that she has a son that’s in
his twenties now. He’s still non-verbal
and in diapers, and she’s just recently had to put him into a group home.
We hugged and talked and talked and hugged. The miracle of the situation, however, left
me almost as quickly as she did. I mean,
I could see God in it at first. But I
couldn’t keep God in it, if that makes any sense. This is because all I could think about, for
the next two days, were the words “twenties” and “group home.” So much for all the spectacular peace I’d
supposedly made with my worst fear.
The screaming has recently started up again - along with the
hitting and the kicking and the pushing and the breaking stuff. What was a two inch long scratch on my face
(thankfully put there the day after my
talk) has mercifully healed into a small scab that nobody seems to be
noticing. Make-up is still my friend,
that’s for sure. But there’s going to
come a point, and I honestly don’t know how soon, when all the make-up in the
world isn’t going to cover up the fact that I have a violent child.
I don’t know what’s going on with him. If he’d just learn how to talk already, then
he could tell me. But NOOOOOO.
He’s decided to beat the shit out of himself and everybody else for the
rest of his life instead.
Oh, did I mention the self-harming? He’s got scratches and bruises all over him,
put there by himself. This is what Cale
does when you yell, “NO, NO CALE, you can’t hurt people!” or “NO, NO CALE,
don’t break that!” He turns around and
starts hurting himself instead. And he’s
been hitting the walls (and other things) so hard lately that I honestly can’t
believe he hasn’t damaged his own hands yet.
What about the Ipad?
Oh, he broke it. He threw it
across the room at school and it didn’t work after that. And yes, Apple replaced it. But all of the photographs we’d spent hours
taking and downloading into the program, have been lost. And, frankly, neither Shane nor I have had
the energy yet to do it all again.
Isabel had an appointment with the psychiatrist last
Wednesday, but I showed up with Cale instead.
Again. Poor Isabel – always taking
a back seat to Cale. And poor Alden –
always taking a back seat to both Cale and Isabel. Alden has actually started saying, “God, I
hate it at our house. I hate living with
kids with Autism.”
We’re currently trying to teach Alden and Isabel how to
block. “Grab Cale’s fists as they’re
coming at you and then, whatever you do, don’t let go of them!!” And they’re getting lots of practice with
this at the moment. It’s very hard for
them to do, though, because Cale is almost seven years old now and he’s getting
quite strong. And he’s sneaky. He acts like he’s calming, for a second,
until Alden or Isabel loosens his/her grip, then he hits him/her in the head
again.
And it always comes back to this. No matter what we try - no matter how many
specialists we see, no matter how much therapy we do, no matter what diet we
put him on, no matter how many supplements and pro-biotics and herbal sedatives
and psych. meds and b12 shots, etc, we give him – it always comes back to this. And this is very hard for me to accept, you
see, because my daughter, Isabel, has Autism as well. And I’ve watched her get better and better and
better. But with Cale, there’s never any
significant change.
If someone would just tell me, if someone (a doctor maybe)
would just SAY that Cale’s never going to get better, if I could just KNOW that,
then I could make peace with it and move on.
But nobody can tell me that and still live with themselves, because you
just never know for sure. But I think
that this is what the professionals have been trying to tell me, without
actually saying it, for some time now.
The psychiatrist just took Cale off the medication that he
thinks could be causing the extra aggression, and he’s doubled the one that
makes Cale grind his teeth so hard all the time. God, I’m always worried so sick over all
these medications. But this new
psychiatrist seems to know what he’s doing.
He’s going to have us do some genetic studies this summer, just to see
if Cale has something more than Autism going on.
“We’re looking at what appears to be Classic Autism (that
rare, magic little spot at the very bottom of the Autism spectrum – it’s a
label that exists to specify the idea that there’s never going to be
significant improvement),” he said, “and that’s probably what it is. But let’s rule out the possibility that there
are other genetic disorders at work here, just so we know for sure there isn’t
more we could be doing for him.”
“Yes, lets,” I said.
It somehow reminded me of the time when all of Cale’s
therapists got together and told me that the best we could ever hope for, for
Cale, is that he might be able to communicate his most basic wants and needs
some day (“eat” and “drink” and that sort of thing, nothing that even remotely
resembles real communication).
I think it was the term “Classic Autism” that made me think
of it, because again all I could hear were the words “twenties” and “group
home.” Only I know full well that Cale’s
not going to make it to twenty. Our
nephew with “Classic Autism” was nine when they put him into a group home. He’d become big enough, by that age, to be a
significant risk to the safety of others.
Cale’s almost seven.
This thing is like a big, mean dog that sits on top of
me. And the more I feed it with these
kinds of thoughts, the bigger it grows.
Pretty soon it’s so heavy that I can’t get out from underneath it at all. And it feels like I’m just tired. Just really, really tired. “I’m just so tired, so tired,” I keep saying,
but the truth is that, by that point, it’s no longer about needing a nap. By that point I think it might actually be
beyond my control. I was immobilized for
two days after I gave that talk and met that woman. Two days this time. That’s how big this puppy got.
I don’t know why I still do this. I mean, it’s not like any of this stuff is
new. I think that it just blind sides me
sometimes. I stopped eating, stopped
showering, stopped cooking, cleaning, etc. I didn’t even watch T.V. All I could bring myself to do was to go
outside into these gorgeous mountains that I get to live in, and alternate
between sitting up and lying down.
Shane was out of town that week. And thank God I had to get the kids to school
each day, pick them up after school, find dinner each night, and keep Cale from
beating everyone up, or I probably wouldn’t have moved at all. I just couldn’t stop thinking, “It’s really
going to happen. God’s just preparing me.
That’s what’s going on.”
Luckily, I had a place that people were expecting me to be
on the night of day two. And because I
worry, just enough, about what people think of my ability to show up where I
said I’d be when I said I’d be there, I managed to pull myself out of the
self-pity tar pit, take a shower, and go.
And, afterward, a friend of ours came out to the house to check in with
me.
There are pluses and minuses to having friends that know you
really well. The pluses, of course, are
that they know you really well. The
minuses, however, are that they know you really well. “So what’s going on with you?” my friend
asked.
I don’t ordinarily tell anyone when I can’t get out from
under the big, mean dog because I’m ashamed to have been feeding it in the
first place. I don’t want to be that
kind of person anymore. I want to be a
helpful person – someone that people feel they can come to for support, not a
gaping black hole that people have to walk a wide circle around in order to
avoid getting sucked in. So I honestly
don’t know why I answered, “I’ve pretty much been sitting in the same spot
since Shane left. I’m afraid that I’ve
shut down.”
We sat in silence for a moment while he contemplated whether
or not to run screaming in the other direction.
“You know,” he finally said, trying hard to hide what
appeared to be the slightest hint of underlying frustration, “We’re not always
good at guessing how to help you guys. That’s
why I texted Shane when he left and asked what we could do while he’s gone. We could bring meals. We could watch kids. We could do whatever, but we have to be told
what because we don’t just know.”
I do think about that sometimes. I mean, there are all these people here that
offer help. But my kids don’t eat
regular food, and I’d hate for someone to take the time to cook a meal just to
have my weird kids refuse it. And
there’s no point in having someone babysit when all I’ll probably do, without
my kids, is lie there and stare at the mountains.
I’m losing my child.
Do you understand that? I’m
losing him very slowly, and there isn’t anything in the world that anyone’s
ever going to be able to do, or say, that’s going to help me with that. All I can really do, when it actually
overtakes me, is quite feeding the mean dog and then wait for it to shrink back
down to size again. It’s an inside deal.
I tried to explain this to my friend. I talked about how I needed to not feed the
mean dog in the first place. I talked
about how I needed to be feeding the other dog, the nice dog, with positive
thoughts instead (and somehow my friend managed to NOT roll his eyes as he listened). I talked about how I needed to be helping others
and living in the moment and all that jazz.
And it all sounded pretty good, but it somehow didn’t hold any actual
water since I was still in the same spot I’d been since Shane had left. My friend then patiently suggested something.
“I don’t know, maybe we just come over here,” he said, “And
maybe nothing gets done. Maybe we just
be here.”
Huh.
You know, I guess I had always thought of the word “help” as
an action word. More importantly, I’d
always thought of it as a “taking” word.
You take something from someone – someone’s time, for example, to get
something done that you need done. But
I’ve always thought that if you don’t actually need anything done, then you
probably shouldn’t be “taking” time away from others.
I had never really thought of it in the way that my friend
was talking about it here – to just let somebody be with you. Not to cook, not to babysit, not to “do”
anything in particular, and certainly not to attempt to fix your problems, but
to just to be. It somehow reminded me of
the meditation that that woman that I admire so much suggested. “Go to the place that hurts and stay
there. Don’t try to fix or change
it. Just be there.” People don’t need to understand a damn thing about how you’re feeling, or about anything
for that matter, in order to be able to do that.
I suddenly realized how limited my ideas about “help”
are. I also saw what a destructive thing
it is to think that others need to understand
what you’re going through in order to be able to help you.
This made me think of the woman in the back row with the
tears in her eyes again, which snapped me right out of it. I mean, I could actually hear the sound. One of my favorite people likes to say,
“That’s the sound of your own head POPPING RIGHT OUT OF YOUR ASS.”
This woman wasn’t crying during my talk because I was
helping her. I certainly wasn’t. And she wasn’t crying because she was getting
something done that she needed done, or because all of her problems were
suddenly being solved. She was crying
because for one, brief moment, she wasn’t alone. And God, that’s a really big deal, isn’t it? I could suddenly see the God in it again.
I’m reminded of that terrible old county song that I can’t
remember the name of. And it’s probably
not terrible. I just have a strange
aversion to country music, that’s all.
But lyrics say something about a little boy that watches his parents
fight violently in the midst of alcoholism.
And one night, one of the parents actually kills the other, if I
remember right.
The little boy is watching this from behind the couch, or from
behind the door of the closet, or somewhere.
But, sitting right beside him, is an angel. Or Jesus.
Or something, I can’t remember what form God takes in the song. But he was sitting right beside the little
boy, and the little boy could actually see him.
God doesn’t keep life from happening. I often wonder why this is and I often ask
him why. And the answer that I
continually get has something to do with people having free will, something to
do with allowing people the dignity to experience their own lives. And while bad things do seem to come out of
this sometimes, there are many good things that happen as well. I mean, you can see God (or, if you
prefer, good) in everything, every single day, if you just stop and look for it.
I went to Starbucks with a friend of mine once, after I’d
been trapped in my house for months because I couldn’t even take Cale to a
grocery store because of his behaviors, and I said, “God, it’s so beautiful in
here! (in a Starbucks for crying out loud - how pathetic is that?). Why do you suppose that God likes
to keep me trapped like a prisoner in my own home?”
“Oh, no,” she said, “God’s not the reason you’re trapped
like a prisoner. God’s the reason that
you’re at Starbucks today.”
It’s such a simple shift in thinking that I’ve never
forgotten it. It's all about what it is that I want to experience, or, rather, how I want to experience life happening.
I’ve been practicing this again lately. When I look at my son, I have this tendency to
only see what he’s doing that’s not normal because I get so worried about his
future. So I’ve been making a conscious
effort to see all the wonderful things, the things that are exclusively Cale
being who he is (the matching pajamas and the rubber boots, and the smiling and
the trying to be a good boy in his own little ways), right now. God is in the right now, all the time. My son’s never going to be alone. And he’s never going to be unloved.
I can’t pretend that my kids’ problems don’t bother me, and
I’ll always have to continually forgive God, continually forgive the world that
we live in, continually forgive the way things are, in order to be able to keep
going. And even though I occasionally
forget and try to do it alone, I’ve never, not even once in my whole entire
life, had to do it alone.
Speaking of that, I’ve got about a hundred pages of unseen
material that I’m hoping will be a book someday. And I’m adding to it on a daily basis. It’s coming along slowly but surely.
My dream for this story of mine, the whole point of it
really, is that others might read it and feel like they’re not alone. I mean, there have got to be literally
millions of people out there who were raised with a sibling with Autism, who
then turned around and had children of their own with Autism…
Hmm.
Okay. Maybe there
will be one other person out there
who will read my story and feel like they’re not alone, while everyone else is
busy snoring. Yup, that’s probably more
realistic. And that would totally make
it worth it.
Thanks friend.
