a sad but true autism story - chronicles of ben

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http://www.autismvox.com/not-a-happy-but-a-true-autism-story/

THE CHRONICLES OF BEN

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For 12 years, their autistic son had been part of the family. now

they had to

say goodbye.

BY DAVID ROYKO

June 10, 2007

Ben loves babies, especially when they are in distress. He smiles and

says,

" Baby cries. " We don't know what it is that he finds appealing about

a sound

that sets most other people's teeth on edge, but it's unlikely he

enjoys the

baby's anguish. Ben's severe autism blinds him to the emotional

meaning of the

tears, leaving only the novel and entertaining sights and sounds of

the baby's

performance.

" Baby cries, " he says to me as he stares with interest at my own

performance, as

I sit sobbing next to him on the couch. Ben's gaze shifts between me

and Barney

on TV, singing " I love you, you love me . . . "

" It's OK, Ben, " I say between gulps of air. " Daddy's just feeling

very sad. " I'm

not sure whether Ben cares about the explanation, but he is riveted

until the

next section of Barney begins, and my tears are trumped.

The past 24 hours have been grueling, but it's the past dozen years

that are

really hitting me. Ben had been a " difficult " baby ( " Baby cries "

indeed), and

the diagnosis of autism that came as a vile birthday gift the summer

he turned 2

suggested that things wouldn't get easier for him, or us--Mom ,

Dad Dave,

or Ben's non-autistic twin brother, Jake.

Soon after the diagnosis, I saw a TV episode in which the mother of

an autistic

boy was in an ER because her arm had been inadvertently broken by the

growing

lad. The doctor discussed residential placement, her broken arm being

the last

straw. I remember wondering if that would be us someday.

A decade later, Ben has yet to break any arms, but 's are full

of bruises,

scratches and scars from old scratches. She's 5 feet 3 inches tall,

and Ben

already tops 6 feet and 250 pounds (my DNA's fault--I'm 6 feet 6

inches and

weigh more than 300 pounds). Developmentally, he is a toddler.

Physically, he is

a man, a BIG man, and still growing. Most of the time, Ben is as

sweet a

creature as you have ever known. He has a radiant smile and can be

unusually

affectionate for an autistic boy. Enormously lovable, with a

delightful

personality. Those who work with Ben tend to adore him.

But as he has grown in stature, those moments when he is not a sweet

creature

have become more difficult, if not dangerous. Several years ago, two

of Ben's

therapists met with and me because they felt it was time to

pursue

residential placement. They felt that Ben would make more progress

and better

fulfill his potential in a residential setting. They also felt that

waiting and

watching Ben grow bigger without parallel growth in his socialization

would work

against a good placement for him, narrowing his options.

We didn't disagree. But we didn't do anything about it. To even think

about

banishing our sweet Ben to who-knows-where was enough to induce

nausea,

especially for . So what if her body was resembling a punching

bag? Nobody

ever said parenting would be easy.

The truth is, I was ready for Ben to go to residential treatment a

couple of

years before , but my arguments, anybody's arguments, were no

match for

's maternal instincts. She was determined to see Ben through his

childhood

at home, hoping he could make it to age 21 before leaving. I had

resigned myself

to this, deciding that if we had to wait till then to get our lives

back, so be

it.

What made it especially hard to think about putting Ben through the

trauma of

moving away was that he is such a sweet boy, even when naughty. The

other day,

went to check her e-mail, letting Ben out of her sight for two

minutes,

which is always a risk. When she walked into the kitchen, she found

that Ben had

gone to the fridge, removed a dozen eggs, and smashed each one on the

kitchen

floor.

Then he looked at and said, with a little smile, " Mama, do you

love me? "

realized immediately that Ben was acting out a scene from one

of his

favorite books, about a girl who keeps testing to see if her mother

will always

love her, no matter what deviltry she commits, including breaking

eggs.

So when Ben, standing amid yellow yolk and shattered shells,

asked, " Mama, do

you love me?, " all could do was answer with the book's

refrain, " I will

love you, forever and for always, because you are my Dear One. "

So, we soldiered on, our protective shells of denial growing thicker

as Ben grew

larger.

By the summer of 2005, the situation had deteriorated enough that we

agreed,

still in theory more than practice, that we shouldn't wait any

longer. Ben had

just wrapped up 5th grade, and for two years he had been blessed with

an

extraordinarily gifted and seasoned teacher and a classroom staffed

with

talented and experienced aides. He had made great strides, especially

regarding

toileting, with " accidents " becoming rare at school and less frequent

at home.

But summer brought trouble. Ben does best when busy. I have often

thought that

the schedule that would make him happiest would be 365 days of

school. When

Ben's been busy all day, he's relaxed at night. When he's out of

school and

bored, he is grouchy, and the world around him knows it. Making

matters tougher

was that, come September, Ben would be in a new school, a junior high

with new

kids, a new teacher and new aides. For Ben, transitions, in a word,

suck.

Things did not go well in his new school the first weeks. His

toileting had

regressed badly and he was coming home with soiled clothes in his

back pack. The

notes from school suggested that the days were rough: He wandered off

school

grounds, even though he was being shadowed by his aide, crossed the

street, lay

down in a driveway and refused to get up; he ripped apart the ceiling

of the

taxi that was driving him from school. Even worse, we received word

that Ben had

scratched his teacher and tore her blouse.

Then she quit. We were assured by school officials it wasn't due to

Ben.

From late September to January, Ben's class had a stream of

substitute teachers,

different ones every day of the week, all doing their best. Come

January, the

class had a new 6th grade teacher, but Ben was well behind where he'd

left off

after 5th grade. He also was growing ever bigger.

His behavior at home wasn't any better. His sleeping had slipped back

into a

pattern of frequent awakenings, periodic early-rising (3 a.m.), and

refusal to

go to bed in the evening. The only time Ben doesn't need direct

supervision is

when he is asleep, meaning if he's up, one of us is up.

Then there's the excrement. And more excrement. In his pants, in his

bed, on the

couch, in the car, on him, on us. That's what finally pushed

over the

edge. We are a two-minivan family, with giving me the older

minivan when

we get a " new " used one for her. left the dealership in our old

van to

pick Ben up from therapy while I finished up our new purchase. There

is a

special pleasure in driving a newly-bought vehicle home. Everything

about it is

fresh and exciting, and I was looking forward to briefly exulting

with as

I pulled up to our house.

The sight that greeted me brought me back to reality. Our old van was

in our

driveway, all the doors open, with next to it. Ben was lying on

the van's

floor. His pants were off, and he refused to budge. A neighbor had

already come

and gone, his offer of help heartfelt, if ultimately futile. By the

time Ben

decided to move, he'd left a wake of feces behind in the minivan.

Ben isn't always that way; in fact, we can go months without

experiencing his

more challenging behaviors. The cycle of good and bad phases is what

allowed us

to dream, in the best moments, that he would " grow out of " these

behaviors. But

autism, a neurological condition that impedes growth in social

interaction and

communication skills, is also known as Pervasive Developmental

Disorder. By

definition, autistics don't naturally grow out of, or into, things

the way

typical kids do. So Ben's phases come and go, and his current phase

included car

befouling.

A few days later, with behind the wheel, Ben decided to anoint

the new

minivan. He undid his seatbelt, lay on the floor, and did what he

does. This

time, however, Ben also turned his attention to the driver's-side

sliding door.

In the old van, the safety locks were always engaged. We thought we'd

done the

same with the new van, but we were wrong.

drove with one hand on the wheel, the other reaching behind her

to hold

the sliding van door closed as Ben multi-tasked, trying to open the

door while

lying on the floor and filling his pants. With a newfound lack of

ambivalence,

said to herself, " It's time for residential. "

But first, we had to convince our school district that it was time

and that the

district should pay for it. An Individualized Education Program (IEP)

staffing

was scheduled for Monday a few weeks hence. IEP staffings can

resemble battle

scenes. On one side, parents are armed with experts and lawyers,

determined to

wrest from the school district services they believe their child is

entitled to.

On the other side are district experts and lawyers, determined to

spend tax

dollars in what they deem a responsible manner.

For us, however, IEPs had been, with few exceptions, lovefests. Ben's

are not

subtle problems. The nature of his autism screams, " I need help!!! "

At our first

IEP, before kindergarten, we had our lawyer there, and Ben got what

he

needed--an appropriate special-needs classroom and teacher, a one-on-

one

classroom aide and a taxi ride to and from school because he would be

a serious

management issue for a bus driver and other kids. The past seven

years of Ben's

IEPs were largely uneventful. Until now.

he weekend before the IEP served as our pre-game warm-up. Ben had

been

increasingly aggressive in recent weeks, and not necessarily when

angry or

unhappy. You could be sitting with him, looking at a book or a TV

show, and

before you could react, his hand would dart out and put a deep

scratch into your

arm, or his elbow would land a hard blow to your chest, or his arm

would snap

back and smash your nose and send your glasses flying, or his head

would butt

your head or shoulder. These are not involuntary motions, but

deliberate

actions, meant to--who knows? Meant to inflict pain? Meant to be

playful? Meant

to elicit reaction? All of the above? We just don't know, even if we

sometimes

think we do.

On the Sunday evening before the IEP, Phil, our tax guy, had come to

help with

our returns. Then Tina, a college student who had started working

with Ben

in-house, arrived, allowing to run out and pick up some

prescriptions.

As Phil and I discussed Ben's medical expenses and deductions, Tina

called me

upstairs. Choking back tears, she said, " I don't know what I'm doing

wrong. " Our

250-pound Benny had hit her. She changed activities, but he whacked

her twice

more. I assured her that it was nothing she was doing wrong, that we

have all

been on the wrong end of Ben's aggression, and that he was in a nasty

phase

right now. Then I let her go for the night, put Ben in front of a

video, and

went back to Phil, assuming, correctly, that we had seen the last of

Tina.

By the time Ben was tired enough for bed, it was 11. Jake was already

in his

room, trying to get to sleep. We brought Ben up to his room.

Recently, Ben had wanted to lie with me at bedtime as I watch TV,

especially

when basketball was on. When he would start to doze, I would have him

move to

his room. Usually, this began at 8:30. On this night, it was late,

and we were

ready for sleep ourselves. But Ben decided he wasn't ready.

I stood in his doorway, telling him, " It's time for bed. " Ben tried

to push me

out of the way, saying, " No bed. " stood firm. " Yes, bed, " I said.

Then the scratching, elbowing, head butting, and biting began. I

immediately had

three bleeding scratches on my arm. I slapped his hands away as best

I could,

and then held his arms, telling him, " No Ben, quiet hands. "

He threw his entire weight into me, knocking me against the wall. I

shoved him

into a sitting position on the edge of his bed and quickly walked

out, pulling

the door closed behind me and holding the knob, since we don't have a

lock on

his door. He hollered and slammed against the door a few times--I

could see the

wood bulge. Then I heard the items on his dresser hit the floor. He

was stamping

his feet, and screaming with inarticulate rage.

Each time Ben quieted down, I would crack open the door, only to see

him

standing, ready to lunge again, or kneeling, ready to lunge again.

Quickly, I

would try to steer him toward the bed, and then defend myself from

the blows and

bites and retreat again to the other side of the door.

After an hour, I heard Jake say something from his room. It has

always amazed me

that Jake can sleep through Ben's middle-of-the- night rages. This,

however, was

a particularly loud and long one.

Jake's a bright, gregarious boy, and even though Ben's a very hard

child to

interact with, Jake is a devoted, protective brother. As lay

down

alongside Jake to comfort him, he expressed intense sympathy for

Ben. " I

remember what it's like to be afraid to go to sleep, " he said. Then

he said, " Is

Dad hitting Ben? " I am not a parent who hits, but the sounds from

Ben's room had

made Jake wonder, and worry. He began to cry.

As I stood outside Ben's room at 12:30, holding the knob, watching

blood run

down my arm, listening to Ben scream and Jake sob, I found myself

fighting the

urge to phone one of the IEP team members and say, " Listen to this

and tell me

Ben doesn't need residential. "

The question could reasonably be asked, " Why didn't you just let him

sleep in

your bed? " On many a night, that's precisely what we have done--given

in. But it

was late, he was tired enough to be dozing on the couch downstairs,

and dammit,

we wanted to go to sleep, which couldn't be done with Ben in the same

bed. When

the tantrum began, I didn't think he had the energy to sustain it for

more than

a few minutes. By the time it had gotten to this nuclear level,

giving in wasn't

an option. His aggression would carry over, and we would be

reinforcing and

rewarding the behavior.

What probably brought Jake to tears was hearing me say to , " I'm

starting

to think we might have to call 911. " I was concerned that Ben would

smash his

bedroom windows (he's done so accidentally more than once, but not

while

raging). Maybe a 911 call would bring paramedics with a sedative to

inject. I

kept listening for the sound of shattering glass, but it never came.

At last,

close to 1 a.m., the room got quiet. I looked in.

Ben was asleep, knees on the floor, head on the bed. I was wrung out,

on the

verge of tears myself, but relieved it was finally over. It wasn't.

When I

walked in, my nose told me that Ben had a load in his underpants.

Excrement can serve as Ben's trump card. The last word. As one of his

therapists

said, " The message is clear: [Expletive] on you! " Ben has virtually

full control

over where and when he goes, and total awareness of what the bathroom

is for. He

knows that when he's in a situation he doesn't like, such as being

made to go to

bed, all he has to say is " bathroom " and he's whisked away to a

toilet.

Alternately, he knows how to change the scenery by not using the

toilet. Since

he doesn't know the meaning of embarrassment and feels nothing in the

way of

social pressure, a pantsload has few drawbacks while guaranteeing an

interactive

trip to the bathroom or the bathtub. Ben's " accidents " are really

anything but.

They are decisions. As Ben knelt on the floor, dozing with his head

on the bed,

the contents of his underwear delivered his message loud and clear.

We got Ben into the shower, and much to our relief, he went to sleep

immediately

afterwards, as did Jake. Not surprisingly, it took Mom and Dad quite

a bit

longer to drift off.

A couple of months earlier, had discussed with Jake the reasons

why Ben

would have to go live in a residential treatment and education

facility. After a

while, Jake said, " Mom, are you trying to convince me or yourself? "

Jake had

been the one person within our circle of friends, family and

therapists who had

not yet signed off on the idea, relating to Ben in the acute way only

a twin

brother can.

As I drove Jake to school the next day, I asked if he disagreed about

the need

for Ben to move to a residential facility. " No, not anymore, " he

said. " After

last night, I agree. He needs it. "

When we brought Ben to school, his teacher greeted us and took Ben to

his class

while we made our way to the conference room. Past IEPs always began

with some

version of " Who is Ben? " and " What are your dreams for Ben? " We

didn't have time

for that today, and since most of the 15 or so people there knew very

well who

Ben was, there was no need.

Our concern at this point was nothing less than survival. As he grew

larger and

stronger, the potential for danger to us grew, which meant danger for

Ben. Not

long ago in our area, an autistic man in his 30s, living in a group

home and

having what sounded eerily like one of Ben's tantrums, was killed by

police

intervention.

We described how things had gotten to the point where the only

appropriate

solution, as we saw it, was a residential placement. It was what he

needed,

desperately, and now, before any more time was wasted and he grew

larger and his

options narrowed. If we didn't act now, his future, already hugely

compromised

because of his autism, would be even more so. By way of example, I

described the

previous night's adventure, with my scabby arms providing the

multimedia portion

of my presentation. I genuinely thought there would not be much more

to discuss.

and I could not believe our ears when one participant said that

she

believed Ben's needs were being met in the classroom setting. For a

moment, I

didn't know what to say, but our lawyer did. She is one of those

extraordinary

people that you almost believe it was worth having an autistic child

to meet.

Almost. Besides being smart and overwhelmingly compassionate, she is

non-adversarial, always choosing to negotiate instead of litigate,

but she can

play hardball if she has to. She was being honest when she

said, " Look, you all

know I don't play games, and I'm not saying this as a threat. But

sometimes I

have a kid where the needs are so obvious, and that is the case here.

Ben needs

a residential placement. Just so you know, if we have to, we will go

through

[litigation] and we will win. "

Soon after that salvo, Ben's classroom teacher was pulled from the

meeting.

After a short time, a couple of others were called out, and then

another.

Something was up.

We went on with the meeting, growing increasingly incredulous that we

were going

to have to jump through hoops after all. If Ben isn't an open-and-

shut case,

then who is? What does a kid have to do to " need " a residential

placement, I

thought to myself--send someone to the hospital?

The first person to return to the meeting looked shaken, and spoke

quietly. " Is

it Ben? " I asked.

It was Ben. And he'd just sent someone to the hospital.

and I looked at each other. We didn't know whether to laugh or

cry.

Ben was having a rough moment. By the time it ended, one aide had a

bad scratch,

and another had been bitten on the leg so hard that, though Ben's

teeth hadn't

penetrated the fabric of her pants, she still had a bloody welt.

She's the one

who went to the hospital.

" Ben's doing our work for us, " I said.

" I would say so, " said the administrator who makes the decision, as

she wrote

her notes. " He needs residential. "

If this had been a basketball game, I would have been running around

jabbing the

air with index fingers and hooting loud and long. Yes, we had " won. "

But what

we'd just won was funding to send our sweet little Benny boy away

from home. I

felt overwhelming relief and a touch of queasiness. I imagined it to

be similar

to what a loved one feels when they win a huge settlement because of

an accident

that resulted in the loss of a husband or a child. It's not the kind

of win that

brings a victory party.

There's no denying it though: Ben had perfect timing.

I got home just before Ben was dropped off. He looked like he'd been

through an

ordeal. His skin was blotchy, and he seemed to have a slight bruise

that might

turn into a black eye. The blotchiness was probably from the strain

of the

tantrum, and the bruise was likely self-inflicted- --Ben hits his

face

with the

heels of his hands when frustrated.

But he was in a good mood. After dinner, we sat together on the

couch, and he

was his sweet self, smiling and snuggling close. We watched " Barney, "

a favorite

of his for 12 years now. (Can you imagine 12 straight years

of " Barney " ? Autism

truly is hell.) Barney began singing, " I love you. "

Having won our case for residential, we knew it meant Ben's days at

home were

now numbered. We couldn't say precisely when it would happen, but

within a

matter of months, Ben would be moving out, likely for good.

Barney continued, " You love me . . . "

Watching Ben beaming with joy, it hit me for the first time: I am

going to miss

him so much. That's when my floodgates opened. " Baby cries, " said

Ben.

I know residential is what he needs, I know he needs it now, and I am

relieved

beyond words that it will be happening. But I cannot imagine what

this will be

like for him. How confused and terrified will he be? How much will he

miss his

house, his family, his many routines, everything he has ever known?

Will he

wonder if he'll ever see us again?

I was enraged. Autism had already stolen so much from Ben and from

our family.

Now it was pulling off its biggest heist yet, robbing the mint of its

gold: At

age 12, Ben was moving out.

As I had told Ben, I was feeling very, very sad--a despair I hadn't

felt since

those first days after the diagnosis. Since then, we had spent years

repressing,

rationalizing, sucking it up and just doing what we had to do to get

through

each day. Now the finish line for this phase of our family's life had

come into

view, and, somehow, it seemed sudden.

At the same time, the enormity of this phase that we were leaving

behind was

sinking in. Autism had become the center of our existence. Our lives

had

revolved around it, and I am finding it hard to imagine a family life

that isn't

held to a close orbit around autism.

That night, Ben was remarkably cheery considering how little he'd

slept the

night before. As for the rest of us, we were drained. and I

anticipated an

early night for Ben. Until then, he'd be happy to watch TV with us in

the den.

Which he did until dozing off--at 4:30 in the morning.

Next week marks the end of Ben's first year living away from home, at

the

Oconomowoc Developmental Training Center. It's just 90 minutes north

of our

house, in southern Wisconsin, and we see Ben frequently.

As heart-wrenching as it sounds--if not plain sadistic--Ben had to go

without

us, cold turkey, for the first month. No visits. Face-to-face contact

would only

send him blasting off with hope that he was finally going back home,

only to

smack his head on the ceiling of his new reality when we left. Before

he could

see us, Ben had to get comfortable with the training center as his

second home.

One month sounded horrible, yet reasonable and necessary.

For us, that month was like stepping into an alternate universe.

After years of

adjusting everything to accommodate autism, it was only when it was

gone that we

came to understand how much it had become the core of our daily

lives.

We could never let Ben out of our sight, so someone always had to be

on " Ben

duty. " Going out meant leaving one parent home, or paying far more

than typical

sitter wages to one of the very few who could handle Ben while we

waited for the

cell phone to ring with a crisis. Autism meant unpredictable

bedtimes,

unpredictable nights and unpredictable wake-ups. Going places with

Ben had

become virtually impossible except to therapists and the like. At any

moment,

anywhere, anytime, there was a good chance Ben's bowels or bladder

would bring

the kind of event that most parents recount for the rest of their

lives as their

big parenting horror story, but for us was business as usual.

These and a thousand other aspects big and small were now history, or

at least

someone else's problem. Ben is in a place where those issues actually

can be

solved through 24-hour behavioral programming that should eventually

rewire his

brain.

On our first night without autism, Jake had friends sleep over, which

was good

because it kept him from noticing the heavy silence and uncanny calm

of the

house. At 9:30, and I, anticipating a stampede to the kitchen

for a snack,

called up to the boys, " Let's go get some ice cream. "

We grabbed the dog, crowded into the van, headed to Baskin-Robbins

and ate ice

cream on the bench outside the store. For Jake, it was a first: He

had never had

the experience of a spontaneous trip with Mom and Dad and friends to

get ice

cream. It was our first " normal " experience as a family, the kind of

normalcy

most people take for granted, but for us was anything but normal.

On the second night, said, " It feels like I've taken a muscle

relaxant. "

If only it had been that simple.

We still miss Ben every day, sometimes achingly so. At the same time,

every day

without the tsunami of autism saturating the life of our family still

feels like

a vacation, even as we grow accustomed to a certain degree of

normalcy. That Ben

is progressing, and seems happy, allows us to truly enjoy our new

life. If any

good has come from life with autism, it is a deep appreciation for

the everyday,

a sense of the ordinary feeling extraordinary.

The other day, someone asked if we'd gotten used to this new life

yet, and I

said, " No, and I hope we never do. "

Royko, son of the late columnist Mike Royko, is a psychologist

who has

been clinical director of the Marriage and Family Counseling Service

at Cook

County Circuit Court since 1994. He is the author of " Voices of

Children of

Divorce " (St. 's, $12.95) and is a frequent reviewer of

bluegrass music in

the Tribune

[Guest guest]

This could almost be my own story. S'funny, you fight

in the trenches against the various factions so long

you think you are made of chromium steel with all the

tears long since burned out of you and then you read

something like this and find out the tears have never

really left your eyes.

How many more stories like this must be lived before

people in positions to make a difference lose their

indifference and start working towards corrective

solutions? Must 1 in 150 become 1 in 50 before it

matters more than bridges in Alaska or Paris' latest

exploits or whether Clemens used steroids?

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