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Out of the Grey and into the Light
Who Will Help Our Children?
[One
of the authors to this story, Linda Newland, is the Co-Founder
of Oregon Parents United. With a partner Vicki, she founded an
organization now nearly seven years old called T.A.L.K, an
advocacy and resource program for children with receptive and
expressive speech impairments. This story is copied and slightly
modified from a 1997 edition of T.A.L.K's newsletter.]
Our fight for recognition,
services and information regarding our children started moments
after they were born - the only difference being, at the time,
we had no idea of what was really wrong or how to get help.
"What do you say?", and "Who do you go to for help?", would
become paramount in our lives as the years rolled by. It was
destiny that we found each other and discovered we had more in
common than an instant friendship. Our story is not new. It is
told by countless other parents who have a child with a
disability. T.A.L.K., Inc., was born of our sheer determination
to focus some attention on children like ours. We have been told
many times:
Quick, "who's
on first base?"
And so our journey began. It
was inevitable that we would become outspoken advocates along
the way!
OUR
STORY ...WHERE TO BEGIN?
When Linda and I decided to
write about our children, so our readers would know where we
were coming from, I thought it would be an easy task. After all,
I live it every day, but to describe in a page or two what life
is like for myself and my family since Alex has been born,
turned out to be NO EASY TASK.
"ALEX"
Alex was born in May of 1988.
He was miserable from the time we brought him home from the
hospital. He screamed constantly. He started having ear
infections when he was 6 months old. He had one almost every
month. When he was 9 months old he had his first fever seizure
following an DPT shot, at which time they did an spinal tap and
the results were normal. His next set of fever seizures happened
when he was 21 months old, the same day he was placed in a
hospital and had his first EEG. The results were normal. All the
time the ear infections kept coming. Alex had built up a
tolerance to all the antibiotics they were giving him. His last
ear infection lasted 2 months at which time he was tested for
eardrum motion. We thought our prayers had finally been
answered. His ears were filled with so much fluid, how can he be
expected to speak when he could not hear correctly?
We took him to
see a ear-nose-throat specialist in our town who told us, "THERE
IS NOTHING WRONG WITH HIS EARS!". A month later, we ended up in
Children's Hospital in Portland, OR and had his first set of
tubes placed. I had been voicing my concerns to anyone who would
listen as to why he was not developing in certain areas. His
lack of fine motor skills, his very deviate behavior, not being
able to find a way to discipline him, but MOST IMPORTANTLY THERE
WAS NO SPEECH!
I questioned his Doctor's EVERY
time I brought him in and was told "not to worry.....just wait
and see.....some children develop slower than others".
So with ear tubes in place, we
waited for that overnight miracle. It has been seven years, and
we are STILL WAITING.
When Alex was 2 years and 4
months old, after the tubes were in place, we started speech
therapy, because there was NO progress in his speech. Two months
go by and still NO progress, and we have this huge bill that the
insurance company refuses to pay.
In October 1990 his new
pediatrician did a Denver Developmental test and advised us that
Alex was behind in more area's than his speech.
WOW!................WHAT A SURPRISE! In November 1990, Alex
qualified for preschool through Early Intervention. In August of
1991, Alex started receiving speech and language services from
the Scottish Rites Speech Clinic. In October, his therapist
diagnosed Alex as having verbal apraxia. Alex continued going to
the Scottish Rites Clinic until June of 1992, when he was
dropped for lack of progress. [ by Linda: It is important to
note here, when I tried to obtain services from the Scottish
Rites Clinic for my son Cass, I was told that they would no
longer see children who they felt had long term speech or
language disorders. They wanted kids that would make a quick
turnover, 6 months to a year tops. Because of Alex's
non-progress, the doors to the Scottish Rites Clinic here at
Deschutes County, Bend, OR, would forever remain closed.]
It was at this time, that I
realized, that I was the one who was going to have to solve this
puzzle. So I started on a fact finding mission. His behavior is
terrible. He is abusive to his brothers, to myself and my
husband and sometimes to himself. He cannot hold a pencil
correctly or a spoon. He cannot button button's because of his
poor fine motor skills and of course there is his speech, or
lack thereof.
I began to put the pieces of
the puzzle together and all the problem areas are controlled by
the same area of the brain. In May 1992, I took him to see a
head trauma specialist, who ordered an M.R.I. The results were
normal. From there we went to see a neurologist in Portland, OR,
who diagnosed Alex as having PDD (Pervasive Developmental
Disorder), and we were sent out the door with no support or
guidance or hope.
At this point, I would like to
say that my husband and family had been totally supportive
throughout this ordeal but that would be lie. They were in a
period of denial that was to last three years and still have
these attacks.
The neurologist and the head
trauma specialist both recommended occupational therapy, so off
we went to St. Charles Hospital, Bend, OR. Enter Jill Linman,
OT. Jill was a God-send. She upon seeing Alex found him to have
Sensory Integration Dysfunction, which explains why he has
problems with fine motor skills, goes crazy in stores or new
places, all because his system cannot handle the overload of
sensory input, and why he has no fear of animal's, or
automobiles and why he does not like to be touched or held
unless he wants to be plus being indifferent to pain. Both my
husband and myself were satisfied with the diagnosis, but not
with diagnosis of PDD.
So, in July of 1992, we made
the first of three trips to the University of California in San
Francisco. First to see the Chief of Staff for Pediatrics of
Neurology and next to see the head of the Behavior and
Developmental Clinic. The neurologists noted several odd
behaviors and stated "they found no autism". I was NOT looking
for autism. I was looking for someone to explain away the PDD
characteristics, which they could not do. Their diagnosis was
severe dysapraxia, dysphasia, sensory integration dysfunction
and anomia. "The probability of Alex ever speaking more than
five word sentences is highly unlikely." Nowhere did they
address the behavior issue of which brought us to them, instead
they blamed it on his lack of speech. It is important to note
here, that Alex was not seen by any of their autism specialists
as they did not see a need. We were told that Alex needs a very
structured environment and very little outside stimulant to
learn. Their reports are filled with so many red flags and
contradictions, that it is not even funny.
Alex's speech continued to
detoriate as well as behavior, so in 1994 we went back to
[Oregon Health Sciences University Child Disability
Rehabilitation Center](CDRC) in Portland to see the head of
pediatric neurology and well as the head of psychiatry and had
another EEG done. The results this time, were seizure like
activity over the frontal lobes ...new diagnosis, a variant of
Landau-Kleffner syndrome along with PDDNOS, yet once again for
lack of anything better and again were sent out the door with
nothing other than ..."We don't know no what to tell you other
than you have a real mess on your hands."
Will this nightmare ever end?
Alex received a computer last year titled the "liberator". It
has a 15 to 20,000 word capacity and a price tag of $7,000.00.
This was paid for by the school district, Easter Seals and
Social Security, so all is not dismal!
Vicki
____________________________________
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United Unless Otherwise Noted
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