There
is a deep, deep bruise in my heart. It started out small and has grown to a
brown ugly in some places very black bruise and it is growing larger. I don’t
know how to heal it. It hurts. It is ugly. I don’t like that it is there and
sometimes I’m startled by its presence thinking, “How did that get there?” and
then taking a step back of recognition with the follow thought of, “Oh yeah, I
know that must have been it.”
This
week I’ve noticed this bruise once more. We had a wonderful vacation in Europe
this past two weeks where our boy was happy and fun for the most part. A few
minor behavior episodes, but nothing major that we assessed or is this just
what we tell ourselves and are tolerant to? Grandma didn’t seem to think there
was anything major too, so we took it all in stride. The couple of days before
we left the stubbornness and refusal kicked in, but nothing too devastating.
Then
on the plane ride home a switch clicked and our son’s obsessive compulsive
behaviors began to emerge. Mostly giggling and somewhat playful at first and
then willful and targeting to the point of uncomfortable as he obsessed on
trying to scratch off a mole on my husband’s neck. We got through it. My son
said he tried to curb his behavior because he was afraid of being “kicked off
the plane” as he’s read things in recent media about emergency landings for
such things.
My
husband admits it hurts. The twelve year old pulling on his neck with all his
weight, grabbing at him, punching him when he covers the mole, and getting
kicked repeatedly when he walks away from his obsessive son or tries to separate
himself from him----it all hurts very much.
I
had that when my son was smaller. I had a mole on my chest area, but high
enough that it was often visible. He played with it as a baby and scratched at
it while breast feeding to the point of making it bleed. When I covered it with
a bandage he would fuss and refuse to breast feed. Little did I know that was
shades of things to come. After breast feeding, I got relief from this pulling
at my mole for a little while.
He
started up again when he was four or five not being able to leave it alone. He’d
head butt me if I would put him off my lap where he was bothering it. I
remember locking myself in the bathroom one night and screaming for Martin to
come rescue me as I had wrestled with him and fought him off and I was bleeding
a lot. He had ground my mole down to a bloody hole that night till there was
nothing left. It was gone. After the hole healed it came back much smaller to
where it is barely there. This is when I began to notice the bruise in my
heart.
Now,
the episodes of OCD occur at random intervals lasting sometimes just hours and
other times days. It can be a chipped paint on a wall that becomes a bigger and
bigger hole. They called me from school one day because he had created a hole
in the wall of his school library and he was violently defending his right to
make it bigger and bigger not letting anyone touch him as he did it.
They couldn’t safely get him away from it, and so they called me to “talk him
down”. Fortunately, I was able to talk him down somehow from it, but it wasn’t
easy or without bruising to three adults as we surrounded him and removed him
from it as the library wall couldn’t run away from him.
Viola,
God rest her chicken soul, got plucked one day by him when he was in this mode.
He was crying pulling out her feathers, but couldn’t stop. I heard the ruckus
and came to the chicken’s rescue removing her to a safe place. He often cries
as people around him yell, “Stop it!” to no avail. He can’t. It isn’t that he
won’t, but in this emotional stranglehold on his brain and body it is that he
physically can’t stop. There is no off button.
I
know earlier I said he was worried about getting kicked off the plane. Yes, he
was in a playful stage of the obsessive mode and somehow at that stage if you
can catch it there he can pull it in still, but there is a point of no return
it seems too.
Last night he hit the point of no return and it drove Martin out of the house
as he was getting beaten and wrestled to the ground for his mole. He sneaked
back into the house last night and was able to sleep in our son’s room as our
son had fallen asleep in our bed. As soon as our son woke up though, he found
his father and stared in again. We tried reasoning, all the tricks we knew to
break it, and it just got worse till Martin fled the house in self-defense, but
has sneaked back into the basement to see if he can get some of his work done
without the boy knowing he’s here.
I
just had a chat with our son, now that he’s calmer and had some “alone time”.
You could see his face screwed up in pain just talking about all of this and
what we might do about it. The conversation went something like this:
ME:
Well, Papa can’t live here with you attacking his mole constantly, so what do
you think should happen?
BOY:
He should get the mole removed.
ME:
He has a doctor’s appointment to talk about the possibility on Monday, but
beyond that we’ve all got to live here in peace. How can that happen?
BOY:
I don’t know.
ME:
It can’t continue like it has the past couple of days. And you don’t know why you’ve
got to do this, so how can we get around it?
BOY:
It isn’t healthy.
ME:
Ah yes, you say you’re trying to remove it for his health, but do you think
punching, kicking, and head-butting him and swinging all your weight on his
neck is healthy either?
BOY:
No. But…but…but he hurt me.
ME:
Correction. He defended himself from you punching him and doing violence to him
first. He did not want or intend to hurt you. Do you think what you are doing
to him hurts?
BOY:
It is necessary to remove something that
is unnecessary and potentially harmful to his health.
ME:
No, it is not necessary as it is a healthy mole. There are such things, you know.
BOY:
It has the potential to cause him harm.
ME:
Back to the point, don’t you think you are causing him harm with what you are
doing?
BOY:
(very quietly) Yes. (he begins to cry)
ME:
Sweetheart, how can we help you to stop hurting him? Would a bandage over the
mole help? If he covered it with a big bandage, would that help or make it
worse?
BOY:
It…it…it…help…
ME:
Really? You’d be willing to try harder if he covers it with a bandage?
BOY:
Yes. Otherwise, I will have to remove it causing damage to his function as a
human. It might even kill him.
ME:
No, no one is getting killed over this. You can’t rip off the bandage. You’ve
got to try, okay?
BOY:
Okay. Papa needs a bandage. Go get one for him, Mama.
ME:
I’ll call him and tell him.
I
left our son upstairs in our bed where he has been spending his days since we’ve
returned. We haven’t been able to get him to budge except for meals. I think
that is part of the problem too. In Europe, we were walking a lot every day with
lots of things to see and do. Back home, even when I ask him to go for a walk
or go do things with me all I get is refusal. In that bed, he talks to himself,
and his mind spins and spins until obsessions take over.
You
may say, “Well, be the boss and kick him outside! Get him out to do things!”
and if you say that, you are fooling yourself. I’d pay you well if you think
you could succeed in doing just that as that would be a priceless endeavor to
us as that is what we long to happen. We vary our tactics every day in efforts
to budge him from that blasted bed. I wish it were as easy as making him do it,
but if you’ve ever fought a wildcat, you’d know why we don’t succeed at it very
often just when the wildcat is in a mood to be tamed.
“The
Taming of the Boy” is the new chapter or very old chapter in our lives. As the
teen years loom before us, it seems even more important to get a handle on all
of this. We have him on medication that is supposed to help with it and it does
help. Just when we call his doctor and get that elusive appointment two weeks
out or even a week out from one of these episodes by the time we see him the
crisis is averted and we all decide to keep him on the dosage he’s on.
Before
Europe there were a few episodes we almost changed the dosage, but because we’d
be out of touch overseas, we didn’t want to risk to possible even more going
wrong out of reach of our doctors. Summer is always a trial to find what might
work. Maybe it is time to walk that balance beam once more? Our bruised hearts collectively
can’t take the gymnastics we go through for balance.
My
boy is crying, hoping for a better solution and so are we. I wish autistics that
have been through a childhood like his could tell us how they got through it
all or what worked for them. I go to conferences trying to connect with people
that can tell me more. I call new doctors and therapists and read books hoping
for a better answer. We follow diets and take supplements that help, but haven’t
been the solution.
We give him medication that doesn’t put me at ease what we are doing to his
body in the long run with it, but short term gives us a little day to day
relief from the really bad episodes of violence, obsession, and anxiety that he
suffers with against his overall sweet, funny, and brilliant nature. I don't want to be dependent on chemicals and see the side effects do a number on his health either. I hate that also.
When
will God bend towards us in this matter? I know my child
isn’t the worst, but he’s not the best either and this existence is harrowing
to walk through when he’s at his worst. It is us crying out to the universe for
answers and getting silence. It puts me in mind of a poem by Edger Lee Masters
titled “Silence” here is the part of the poem that jumps to mind that I’ll
leave you to ponder.
There is a silence of a great hatred,
And the silence of a great love,
And the silence of an embittered
friendship.
There is the silence of a spiritual
crisis,
Through which your soul, exquisitely
tortured,
Comes with visions not to be uttered,
Into a realm of higher life.
There is the silence of defeat.
There is the silence of those unjustly
punished,
And the silence of the dying whose
hand
Suddenly grips yours.
There is the silence between father
and son,
When the father cannot explain his
life,
Even though he be misunderstood for
it.
There is a silence that comes between
husband and wife.
There is the silence of those who have
failed,
And the vast silence that covers
Broken nations and vanquished leaders.
There is the silence of Lincoln,
Thinking of the poverty of his youth.
And the silence of Napoleon
After Waterloo.
And the silence of Jeanne d’Arc
Saying amid the flames, “Blessed Jesus”—
Revealing in two words all sorrows,
all hope.
And there is the silence of age,
Too full of wisdom for the tongue to
utter it.
In words intelligible to those who
have not lived
The great range of life.
To
make plain
A
groove that you scratch
