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Karen Siff spent two and a half years implementing
an intensive behavioral intervention technique
known as ABA with her son Jake, who was diagnosed
with pervasive developmental disorder when he
was two. She wrote a first-person account of her
experience for ABCNEWS.com.
Your 2-year-old toddler is more like a 15-month-old
baby, at least developmentally."
That's what a child psychiatrist, two speech
pathologists, a Ph.D. psychologist, an occupational
therapist and a developmental pediatrician agreed
upon after four weeks, seven visits and 12 phone
calls. I watched as they put my son through extensive
testing, questioning, coaxing, poking and prodding
; recording each move on hidden video cameras.
In the end, they
concluded that Jake had what's called PDDNOS;
Pervasive Developmental Disorder Not Otherwise
Specified. That's what all the doctors said. Except
one. The child psychiatrist told me he wanted
to "give it to me straight."
"Your child has autism," he said matter-of-factly.
When I'd found my son lying face down on the driveway
at his second birthday party, I stopped believing
what our family pediatrician had been telling
me over the past few months ; that I worried too
much. The next week I took Jake to the first of
many specialists.
Jake's diagnosis came a month after that birthday.
I guess I should have felt relieved that my fears
about Jake's development were not imagined. I
didn't. The specialists tried to make me feel
better by explaining that PDDNOS was a mild autistic
spectrum disorder, with the emphasis on "mild."
But that diagnosis provided little comfort to
me as I looked at my silent son
who could barely make eye contact with his mother.
No matter what label the doctors gave his condition,
the word autism resonated through my head. Autism
meant my son had entered into a realm of hopelessness
and withdrawal from
reality. I'd seen in it in the movies, I'd read
about it in books.
Initially, instead of dealing directly with Jake's
diagnosis, I entered into what the doctors called
the "denial" phase. The Tuesday Jake
was diagnosed, I called my parents from the doctor's
office to tell them the news. The following day,
I called them back to "untell" them
saying I suspected the diagnosis was a mistake.
Luckily for Jake, my denial phase
only lasted one week. As I later learned, time
was of the essence. The earlier we began his therapy
; the better his potential of recovery.
Jake developed normally until he was 17-months-old.
He reached all of the typical developmental milestones
; he walked, talked and played just like the other
kids his age. Gradually over the next few months,
he stopped talking. He stopped playing. It was
as if one by one, his circuit breakers began shutting
down. My once energetic and spirited toddler was
developing into a listless, disconnected boy.
Dinner Time
Jake could barely feed himself. While his peers
devoured chicken nuggets and french fries, I spoon-fed
Jake as if he were an infant, scooping the Cheerios
into his mouth and making "yummy" noises
as the milk dribbled down his chin. I gently wiped
his face after each bite. He screamed if the milk
touched his hands or trickled inside his shirt.
Jake wanted to eat Cheerios in his plastic yellow
bowl for breakfast, lunch and dinner but I wouldn't
let him. I made pancakes in the shape of Mickey
Mouse and rolled cheese into balls that I stacked
like little snowmen. He grunted to tell me that
these foods were not acceptable.
One week he ate only hotdogs. They had to be
sliced into nine even pieces on hisWinnie the
Pooh plate and the ketchup could not touch the
hotdog. But my husband Franklin didn't know the
ketchup rule, and one night I came home to
find a hysterical child lying on a red-splattered
kitchen floor with his desperate father at his
side trying to calm him down.
Once, my son ventured to try a bite of spaghetti.
He seemed to like it. In my excitement, I went
out and bought every kind of pasta. And he ate
them, devouring the red, green, yellow tubes,
shells and bowties faster than I could shovel
them into
his mouth. He just wouldn't touch them with his
hands. The rubbery feel of the pasta against his
skin sent him reeling. Once, a bowtie brushed
against his hand and he grabbed the tray on his
highchair and shook it so hard he tipped himself
over.
I tried to comfort myself by reading parenting
magazines that said a lot of 2-year-olds have
eating issues. But when a typical child decides
she wants bologna on white bread every day for
lunch, even Dr. Spock deems it normal. When my
kid did it, it was considered by the specialists
to be "stereotypic autistic behavior."
The magazines said that toddlers like to spin
around and make silly noises. But when Jake did
it, he was engaging in what his therapists call
"self-stimulatory behavior."
40 Hours A Week
Out of all of the doctors I consulted, the one
I respected the most was the developmental pediatrician
Cecilia McCarton. Her expertise in the world of
childhood developmental disorders was matched
only by her kindness. After thoroughly explaining
Jake's diagnosis to me, she came around from behind
her desk and gave me a hug.
Despite her honesty and compassion, when Dr. McCarton
told me how many
hours Jake would need for his therapy, I almost
consulted someone else.
"Your son needs 40 hours of Applied Behavior
Analysis a week," she told me. "Plus
two half-hour sessions of speech and occupational
therapy."
"But he's only 2! He's still a baby."
I hugged Jake closer to me as he sat on my lap
in the office.
"The sooner you begin his therapy the better.
You're fortunate you caught him at such a young
age."
Dr. McCarton went on to explain about brain plasticity,
and the brain's potential to make new connections
if proper therapy is introduced.
"The only therapy that has been scientifically
proven to have success with children like Jake
is Applied Behavior Analysis, or ABA It's similar
to behavior modification. When your child demonstrates
an appropriate behavior, he gets rewarded. When
he demonstrates an inappropriate behavior, he
doesn't get punished; instead, the behavior is
ignored, or he's taught to do something more appropriate.
Recent studies show that with intensive one-on-one
ABA therapy between a therapist and a child, 40
hours a week, children can actually both regain
skills they lost and continue learning."
"But will he ever speak?"
"We don't know that yet."
"Will he ever be able to interact ; to play
with other kids?"
"We don't know that yet either."
There were a million other questions I wanted
to ask her but I was afraid of her responses.
When I left the office that day and made it to
the parking lot, the first thing I did was sit
behind the steering wheel and cry. I glanced up
at my son in the rear view mirror. Jake gazed
at the windshield.
By the time I got home, I wasted no time beginning
my own research. It's not that I didn't believe
Dr. McCarton, it's just that I wanted to be 100
percent sure we were making the right decision
for our son.
I spent my days calling doctors, parents of children
with autism, specia leducation schools, outreach
programs, organizations for autism, our local
county health officials, and enrolling in autism
conferences. I'd set Jake on the floor beside
the phone, and stroke his back as he lay on his
belly and stared at the wall. After each call,
I recorded the name, phone number and
conversation in a green loose-leaf notebook, dating
each entry, and color-coding the referrals. I
spent my nights researching on the Internet and
reading about all of the different treatments
for children with autism ; everything from swimming
with dolphins to play therapy, secretin hormone
therapy, cranial sacral osteopathy, auditory integrative
therapy, psychic therapy, nutrition and homeopathic
therapy. Everyone had different opinions about
which therapy to choose, how many hours, and how
to get funding. Each one not only espoused the
virtues of their own therapy but also denounced
all of the others.
A Huge Commitment
Ultimately, my husband Franklin and I chose ABA
as the foundation of Jake's therapy. Our decision
was based on all of the scientific evidence coupled
with conversations with parents of autistic kids
who had been successfully
mainstreamed as a result of intensive ABA.
"It's a huge commitment," one of the
ABA therapists explained to me and Franklin. "It's
not just about his therapy sessions. You'll have
to adjust your entire lifestyle to accommodate
your son."
And so we did. We converted the downstairs of
our house into Jake's therapy room. We bought
all of the supplies, toys, furniture, food and
special reinforcers the therapists told us to
buy. I put my management consulting business on
hold. Managing my son's therapy became my full-time
job.
Franklin and I thought that the hard part was
deciding on which therapy to choose. We were wrong.
We had no idea how difficult it would be to find
qualified ABA therapists. Even after having been
accepted into the Alpine Outreach Program, we
still had to hire our own team of therapists.
Alpine would provide the training. After calling
our local county officials and parents of autistic
kids for recommendations, we quickly learned that
the most qualified therapists were booked. We
were told that a college student or any bright
energetic adult could be trained, so we posted
ads at the library, YMCA, coffee shops and job
placement centers at the three local colleges.
Weeks went by and we were only able to find three
therapists who could give us a combined total
of 15 hours a week. This was nowhere close to
our 40-hour goal.
We knew the importance of early intervention,
remembering the crucial window that would begin
to close over the next year if we did not get
in all of Jake's therapy hours as soon as possible.
So Franklin and I made the decision to become
Jake's therapists. We went through 10 hours of
classroom training and 20 hours of experiential
training to become qualified to teach our son.
We sat through lectures on operant conditioning,
learned to take scientific data, and completed
hundreds of pages of required reading.
Patient Teaching
During my therapy sessions, I was instructed
to sit directly across fromJake, about arm's length
distance, so that I could easily reach over to
him. On the little table next to us was a plastic
tackle box with his "edible reinforcers"
; M&M's, chocolate chips, pretzel pieces,
raisins, and treats that were used as rewards
throughout the session. The box by my feet contained
nonedible reinforcers ; airplanes, whistles, shakers,
rattles and other stimulating toys that might
provide motivation for Jake to complete a
task. I placed the data sheet where I recorded
the results next to the thick black program book,
which gave me detailed instructions on which programs
to teach in which order.
Jake needed a lot of help during therapy. He had
to relearn simple things that he used to know.
Like how to respond to the instruction "sit
down" or "stand up," or even how
to respond to his own name.
"Sit down," I'd say in my therapy session
with Jake, using an even tone and looking directly
at Jake the way the therapists taught me.
No response. Jake stood still, eyes gazing at
the ceiling.
I recorded an "I" for incorrect on his
response sheet for his first "trial."
"Sit down," I'd repeat, this time placing
my hands on his shoulders to gently guide him
into the chair.
Eyes still averted, he allowed me to ease him
down.
"Good boy!" I'd squeeze an M&M between
his pursed lips for his efforts, recording a "P"
to indicate that I 'd had to manually prompt him
for his second trial.
"Sit down," I'd repeat 27 more times,
alternating between M&M's, chocolate chips,
hugs and tickles, recording each discrete trial.
Then I'd begin with 30 trials of "stand up,"
"turn around", and other "one-step"
commands before moving on to teaching Jake to
"do this" as I manually prompted him
30 times to drop a block in a bucket.
After each of the 30 trials, we'd take a structured
play break.
It took a total of 150 trials over three weeks
to teach Jake to sit down,
180 trials over three weeks to teach Jake to stand
up, and 2,100 trials over
10 weeks to teach Jake to look at us when we called
his name.
I remember sitting in a meeting with a group of
consultants and autism specialists shortly after
Jake had been diagnosed. One of them was anti-ABA,
complaining about the intensity of the ABA hours.
"It's absurd to think a 2-year-old can sit
through all of these hours of therapy. Your son
should be out playing!" she said, throwing
her arms up in the air.
Without missing a beat, Franklin looked into the
woman's eyes and replied, "You don't understand.
My son doesn't know how to play."
Play breaks during therapy sessions were structured
so that Jake could learn how to play. Jake also
had to learn what the therapists called "gross
motor imitation." They told me he would need
to master this skill before he could begin to
speak. Gross motor behaviors are big movements
like jumping or clapping; most toddlers do them
naturally. If I clapped my hands or raised
my arms above my head and asked Jake to copy me,
he couldn't. He'd simply stare off into space,
not moving a muscle. He used to clap his hands.
At 17 months, he used to imitate all kinds of
things that Franklin and I did.
I spent hours clapping my hands and stomping my
feet and saying "do this" the way Jake's
therapists taught me. Jake stared at the space
between the top of my head and the ceiling. I
took his tiny hands in mine and showed him how
to clap. The minute I let go, his hands fell limply
in his lap. I raised my arms in the victory sign
above my head and said "do this!" My
son
stared through me as if I was not even in the
room. I would bring Jake in front of the mirror
and raise his arms up high so that he could see
himself. I was not sure what it was he saw.
At first, in addition to conducting my own sessions
with Jake, I sat in on all of the therapist's
two hour sessions. I did this partly because I
wanted to learn as much as I could about the therapy,
and partly because I missed spending time with
my son. Jake cried a lot then ; sometimes through
the entire two-hour ABA session. I cried too,
resisting the urge to
interrupt his therapy just to hold him. Sometimes
I entertained thoughts that perhaps the anti-ABA
people were right ; this approach was too grueling
for a toddler. One day a therapist suggested it
would be better for both me and Jake if I didn't
sit in the room during the sessions. I heeded
her advice. That afternoon I found myself in the
local electronics store
buying cable wire and a $70 monitor to hook up
to my home video camera. By the following day,
I was watching Jake's therapy from the next room.
After his initial few weeks of crying, Jake actually
began to look forward to the sessions. He'd smile
shyly and peer out from behind my leg as the therapists
walked through our front door. He'd follow them
down the stairs and sit happily in his little
chair when prompted.
Building a Team
Ultimately, we found three more therapists to
join our ABA team. The combined total hours finally
reached the magic number. With 40 hours of ABA,
Franklin and I were able to transition from our
roles as one-on-one therapists to generalists.
This meant that we no longer worked with Jake
in the intensive two-hour sessions, but were required
to stay on top of his therapy so that we could
generalize the skills he was learning outside
of the therapy setting. For example, when Jake
was being taught to wave bye-bye, we would make
sure to prompt him to use this skill whenever
the situation arose ; when someone was leaving
the house or the park. Sometimes we would create
opportunities; Franklin would walk from room to
room in our house
and I would hold Jake's hand, prompting him to
wave bye-bye as Daddy left the living room and
headed toward the kitchen. When Jake was learning
to point to indicate what he wanted, we were taught
to hold out on rewarding him until
he actually indicated his preference with his
index finger. Admittedly, there were times when
either Franklin or I would look at each other
and say, "Just give him the cookie,"
after waiting 15 minutes for him to point at it.
We knew from his grunts and whining what he wanted.
But we were haunted by the ABA rule about making
sure we rewarded the same behavior that was being
reinforced in his sessions, so our guilt usually
outweighed our impatience. Even the language of
ABA became part of our everyday vocabulary. You'd
often hear us at the park speaking to Jake using
awkward expressions like "good sliding down
the slide" or "show me jumping."
I posted Jake's weekly schedule on the refrigerator
so I could stay on top of the different sessions
he had with which therapists on which days.
Jake's typical Monday schedule read:
9:00-11:00 ABA (Laura)
11:30-12:00 Speech therapy (Jane)
12:00-12:30 Lunch
12:30-2:30 ABA (Anna)
2:30-3:00 Snack/Nap
3:00-5:00 ABA (Lisa)
5:30-6:00 Occupational Therapy (Deb)
6:30-7:00 Dinner
7:30 Bedtime
All of my friends had schedules for their toddlers
that included playdates, gymboree or music class.
And they all made time for naps. Before the diagnosis,
Jake napped around two-three hours a day. After,
we crammed in a 20-minute nap between a mid- and
late-afternoon session.
With the exception of occupational therapy, Jake's
full day therapy sessions were held at home. On
Saturdays and Sundays we tried to conduct half-day
sessions so that we'd have time to take Jake to
the park and do some of the regular things families
do. Whenever we went away for the weekend or vacation,
we brought a therapist with us.
Months of therapy went by and even though part
of me grew more optimistic as I watched Jake master
simple skills, part of me was plagued by fear.
I could no longer imagine my son being able to
talk. Parents always assume as long as the number
of fingers and toes add up, their baby will walk,
talk, play and grow up to be an adult. I could
not live by these assumptions. I
wondered what it would be like for him if Jake
grew up only being able to grunt. Because he was
2, I could nonchalantly say to the other mothers
at the playground, "Oh, my son has a language
delay." They'd nod knowingly, for boys often
speak later than girls. But I imagined that when
Jake turned 6 or 7, I would no longer be able
to cover for him. As he grew, I'd no
longer be able to protect him.
Breakthrough
One night in October, three months after Jake's
diagnosis, I was given the phone number of the
mother of a child who shared Jake's diagnosis.
She was so supportive, encouraging me to keep
up the number of ABA hours and expounding upon
the importance of early intervention.
"My son Mitchell was diagnosed at the same
age as yours. My husband and I were diligent about
making sure he got lots of one-on-one therapy
a week. .We were doing speech and occupational
therapy, but most of it was ABA.
It's true what they say about brain plasticity
at that age...get 'em early and they have a chance
of..."
And then I heard a little voice over the phone.
"Mommy, can I go out and play now...pleeeeze?"
"Wait a minute honey, I'm almost done."
"Who was that, your older son?" I laughed.
"No, that was Mitchell." I cried.
And she let me. She knew. She knew what it was
like to be on my end of the phone. I couldn't
imagine being on hers.
Over time Jake learned how to clap, wave, sit,
stand, jump and turn around. He learned how to
point to objects and body parts, identify pictures
of familiar people, imitate gross motor movements,
and play. He even began to do vocal imitation.
I'd watch as he focused all of his attention on
the therapists' faces, mimicking the shape of
their mouths as they made a sound, then trying
to reproduce the sound on his own.
On Monday May 4, approximately nine months after
Jake's first day of therapy, his therapist called
me into the session. Prompting Jake, she whispered
in his ear and nudged him toward me. Standing
in the middle of the room, he smiled and looked
back at the therapist. She nodded her head approvingly.
"Lubyoo," he said in a little voice.
Hugging him close to me, I echoed "Lubyoo
too."
Jake has been through two years, 700 days, 4,160
hours, and hundreds of thousands of trials of
ABA therapy. Gradually, his language began to
come in, as did his social and developmental skills.
He potty trained at 3. He had his first friend
at 3 and a 1/2. At 4, he sang Happy Birthday to
me.
We began to mainstream Jake at a "typical"
pre-school last year, and with the aid of shadows
(trained therapists), Jake is beginning to thrive
in the school setting. The shadows work closely
with his teachers, who report that Jake is fitting
in. To his classmates, Jake is just like them.
I know that my son still needs help ; not in the
same way that I knew two years ago when I found
Jake lying face down in the driveway. I can see
it in his eyes. He doesn't understand storytime
the way the other kids do. And
his language skills are still behind his peers.
Jake's circuit breakers, which gradually shut
down after 17 months, have almost all clicked
back on. But until all of them are on, Franklin
and I are committed to continue with his therapy.
We'll do it until we are sure that Jake can make
it on his own. The son we thought we'd lost has
come back to us. We don't want to lose him again.
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