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MARYJO WEAVER: HANNAH'S
STORY
MaryJo Weaver is a single
parent in Corvallis, Oregon raising 2 children. Her youngest
child, Hannah, has Aspergers Syndrome (a.k.a. High-Functioning
Autism). Because Hannah has been raised at home, her disability
was not "discovered" by Early Intervention or Child Find. The
trouble began when Hannah was first enrolled in elementary
school. Hannah was 6yrs old when she started Kindergarten.
Previous to that time, MaryJo wanted to keep Hannah at home as
long as possible because she sensed Hannah had poor social
skills and possibly other developmental delays. She was
concerned that thrusting Hannah into the environment of
Kindergarten without adequate social maturity would prove to be
disastrous, Since 1990, MaryJo has fought with the Corvallis
School District over an EDUCATIONAL DIAGNOSIS OF AUTISM
SPECTRUM DISORDERS and finding Hannah eligible for an I.E.P.
Special Ed.
Because Hannah needs so much
expensive care, until recently MaryJo was on Public Assistance.
Since 1990, MaryJo has advocated not only for Hannah, but also
on behalf of many other parents whose children have Autism
Spectrum Disorders. In addition, during this time MaryJo put her
self through college earning a degree as a Medical Assistant.
Presently MaryJo works as a Medical Assistant at a local
university health clinic. Between 1990 and the present, MaryJo
has spent over fifty thousand dollars on Hannah's case vs. the
school district and still can not get her daughter an I.E.P. nor
Special Ed. In April 1998, MaryJo "lost" the Due Process Hearing
(the 2nd) vs. the Corvallis School District. The district
refuses to grant Hannah eligibility because of an age-old
problem in our state: the battling difference between a
Medical Diagnosis & Educational
Diagnosis of Autism Spectrum Disorders. In most cases in
Oregon, a medical diagnosis of Autism won't get a child Special
Ed eligibility! The fact that Hannah is a high functioning
Autistic only makes the situation worse. In a nut shell, the
Corvallis School District (and the Oregon Department of
Education concurs) says that Hannah not completing the 6th
grade, being chronically late to school, disorganized, missing
school assignment, not doing & turning in her homework, being in
detentions, being suspended, trying to set a fire at school,
etc. were NOT examples of a NEGATIVE IMPACT
on Hannah's education. Neither the school district nor the
state could tell MaryJo what some examples of a negative impact
would be (no such guidelines exist presently), just that
Hannaah's experiences were not. Thus, no eligibility for Hannah.
When Hannah first entered
Kindergarten on a half day basis, her teacher and a substitute
both noticed that Hannah would twirl, have difficulty staying on
task, did not interact with the other kids, remained in her
outer clothing (hooded coat) and hide under tables. Despite
these reports to MaryJo, the school dismissed these
characteristics as being no big deal. This did little to
reassure MaryJo.
Once Hannah reached 1st grade,
observations of odd things continued. Each day MaryJo dropped
Hannah off at school and picked Hannah up from school. For the
1st month of school MaryJo was met with the sight of Hannah's
teacher walking hand in hand with Hannah. The teacher would sigh
deeply, roll her eyes and report "Hannah had another hard (or
bad) day." Finally MaryJo inquired of the teacher "Should I take
Hannah to a doctor to see if there is something wrong?" The
teacher did not care one way or another nor whas she supportive.
Thus, MaryJo took Hannah to the 1st of numerous doctors who
could not find anything wrong.
In the meanwhile, MaryJo began
to research and read anything she could get her hands [on] to
help her understand what if anything was wrong with her
daughter. One of the resources MaryJo discovered was C.O.P.E..
This was the first time MaryJo had heard anything about rights,
I.D.E.A, Child Find, Special Ed, and broad check lists of
various disabilities. The information was overwhelming. MaryJo
dug in deeper. As suggested by COPE. she wrote the principal of
Hannah's school and the school district's special ed director
requesting Hannah be evaluated. So began the process of
eliminating the 13 categories listed under IDEA. Over and over
MaryJo subjected Hannah to a mind numbing array of tests and
evaluators looking for something to explain these odd
characteristics which Hannah seem[ing]ly 1st displayed upon
entering the school system. At every turn MaryJo was subjected
to character assassinations and dismissals by school staff that
this was (if there was anything) a HOME PROBLEM. It
mattered little to anyone that MaryJo's 1st child did not have
these characteristics. The costs were mounting and MaryJo was
staggering under the weight of the bills, but remained steadfast
and determined to help Hannah - at any cost.
Autism was the last disability
on the list. It was suggested (not by the school system) she get
Hannah up to OHSU for testing and evaluation. This was the
summer of 1993 when there was little information & resources in
Oregon about Autism Spectrum Disorders; especially high
functioning Autistics. Usually these kids were misdiagnosed.
Hannah saw Dr. Broski and Dr. Sacks who concluded Hannah had
P.D.D.N.O.S. (Pervasive Developmental Disorder Not Otherwise
Specified) based on the DSM III used at the time. This was
explained to MaryJo as Hannah being "Autistic-Like" or a high
functioning child with Autism. One of the significant clues to
the doctors in diagnosing Hannah was the photos MaryJo supplied
showing Hannah from birth to the present. In the photos the
doctors could see the flat affect (the light was on, but no one
was home) seen in Hannah. When MaryJo heard that Hannah did have
something and it had a name, it mattered little that there was
nor cure or treatments for kids like Hannah who were not
profoundly and classically Autistic. MaryJo was so convinced all
she had to to was take this diagnosis to Hannah's school & the
district and they would give Hannah an I.E.P. Imagine MaryJo's
[disbelief] when this latest information on Hannah was rejected
and dismissed by the Corvallis School District as not "relevant
and having nothing to do with Hannah's education because kids
don't come to school to socialize"! The doctors had begun to
experiment with various medication which the school said were
not necessary to take while at school. As much as 3+ times a
week MaryJo and Hannah traveled up to Portland for sessions with
the doctors.
Because MaryJUo could not get
the cooperation of Hannah's school to provide structure and
consistancy let alone granting Special Ed eligibility, MaryJo
asked for Mediation. Kim Kay from the Oregon Department of
Education was sent as mediator of this on-going issue. It wasn't
until later that MaryJo realized that the Corvallis School
District Special Ed Director was not supposed to be in charge
and facilitating the mediation. However, it wasn't until the
mediation was under way that Hannah's records mysteriously
appeared when the school secretary delivered them saying the
records were "found in the basement". In spite of the numerous
professional and personal testimony at the mediation (including
Hannah's brother), Hannaha was once again denied Special Ed
eligibility. The school & district's position continued to
believe if there was anything wrong with Hannah,
the school did not see it/did not have a problem with it, so it
must be a "home problem". In hind sight, the lack of
current correct information on Autism Spectrum Disorders (that
phrase had not even been invented in the winter of 1993) was
perhaps the biggest reason for losing eligibility once again.
In spite of the continued
hostility and non-support coming from the school, MaryJo
continued to seek out any information and resources all across
the country. This led MaryJo to Mary Ann Seaton who at the time
was the president of the Autism Council of Oregon. Mary Ann in
turn led MaryJo to many of the experts in the field of Autism
throughout the country: Dr. Rimland, Dr. Edelson, Dr. Morris.
Dr. Mesibov, Dr. Stubbs, Susan Moreno, Joyce Stratton, Jan
Janzen, Yale Study Center, Bittersweet Farms, etc.. The more
information MaryJo gained, the more MaryJo was convinced there
was something very wrong in the Corvallis School District
denying Hannah Special Ed eligibility.
Between 1990 and Hannah's 5th
year in school, Hannah received a variety of treatments with the
cost born by her mother. Hannah tried [Irlen] lenses, squeeze
machine, medication, Structured Teaching at home, and years of
O.T. and P.T... Despite this work (much of it provided by well
meaning professionals unfamiliar with Autism) Hannah's
development remained impaired, sepecially in the social area.
Developmentally Hannah remained years younger than her stated
age. Throughout all of Hannah's school years, MaryJo continued
to have on-going meetings with Hannah's teachers, schools, and
the district with no favorable results (28 in 9 years). Hannah
remained unserviced and left to flounder on her own. Child care
and the community continued to report Hannah's aggressive
behavior which they all saw as having a direct bearing on how
Hannah's school day went. Yet, the school & district refused to
acknowledge this insight. Thus, no help was given to Hannah.
MaryJo provide[d] information packets to the teachers, schools,
and district which were also ignored. Numerous parents and
professionals also attempted to advocate on Hannah's behalf and
still the teachers, schools, and district would not listen.
At the end of Hannah's 5th year
in Public Schools, she was passed on to the 6th grade Middle
School. MaryJo felt that Hannah was not ready nor equipped to go
on to Middle School without an I.E.P.. So she requested formal
mediation. The state sent an independent mediator, who in
addition to the district and their lawyer attended mediation in
1995. MaryJo requested the mediation be held at a netural site,
which it was. Hannah's interests were represented by a family
friend (tho not a special ed lawyer). From 900-6 p.m, a
mediation plan for Hannah was hammered out without the district
having to give Hannah an I.E.P.. Stated in the mediation was the
option (in 6th grade) if necessary, MaryJo could request that a
meeting be held to consider 504 eligibility for Hannah. The
superintendent for the Corvallis School District would not allow
Hannah's Middle School to be in attendance. As a result,
Hannah's elementary school and district were left to speak to
the issues of Middle School teachers, schedules, resources,
curriculum classes, etc. which they all were clueless about! At
MaryJo's insistance, a "Case Manager" was appointed for Hannah
(although this person was not Special Ed), but rather in charge
of the "troubled kids" at the Middle School. Although MaryJo was
permitted to give a school on Autism before the start of school,
as it later was discovered none of the material MaryJo provided
was used. It was only at the firm decision of the mediator that
a "plan" was hammered out. Absence of agreement over these
details were to plague everyone for years to come.
This mediation plan (as it
became called) indicated 1 person, the Case Manager, was to be
in charge of monitoring Hannah's academic progress at middle
school. 3 other people were assigned to be Hannah's teachers in
Math, Humanities, and Science. Montly meetings were ordered
under the mediation plan to chart Hannah's progress in school.
At the 1st meeting, the math teacher stated he felt the math
material was "over Hannah's head". When MaryJo asked if Hannah
should be "placed" elsewhere, he agreed and had nothing to do
with Hannah from then on. It remained unclear if the Math
subject was ever replaced for Hannah. To MaryJo's understanding
it was not replaced. MaryJo brought Hannah to school every day
that 6th grade. MaryJo then took Hannah to check in with this
Case Manager to turn in a Responsbility Card which outlined the
areas Hannah needed to work on. MaryJo then escorted Hannah to
her locker (Hannah's locker was always messy) and made sure
Hannah had all she needed for her 1st class. Nearly every day
Hannah was late. MaryJo then left Hannah to fend for herself the
rest of the day. At the end of the school day MaryJo picked
Hannah up, took her to the Case Manager to check out, and took
Hannah home. The stress and overwhelming negative Middle School
experience caused Hanna to grow increasingly violent. MaryJo
reported this at the monthly meetings, but was always ignored.
They did not care what effect leaving Hannah to fend for herself
in the Middle School environment was doing to her. Hannah's
doctors were also alarmed, but this mattered little to the
school and the district. Hannah was growing more difficult to
live with. Homework was not getting done or turned in on time.
MaryJo reported these changes at the monthly meetings, but
nothing was done - no one cared. No one was looking out for
Hannah or activing on her behalf except for her mother. Hannah
got detentionas and a suspenseion, but this too did not concern
the school. MaryJo was told "all sixth grade girls
do that." At the monthly meetings, which averaged 1-2 hours, old
issues were just re-hashed and did not focus on solutions -
mostly because the school believed there was was nothing to
solve.
In Jan 1966 MaryJo asked for a
meeting to determine 504 eliigibility. To her surprise there was
little discussion or opposition. Her teachers stated that Hannah
was disorganized and behind in her school work thus, the
"Mediation Plan" became a 504. When MaryHo asked for a form or
some soft of confirmation she was handed a piece of paper that
said "Hannah's 504 Plan." MaryJo was told to attach this cover
page to the mediation plan. Neither the principal or the staff
knew who the 504 person for the district or their school was. It
was through this process that MaryJo discovered that the Special
Ed Director of the District was the "keeper" of Hannah's records
in her office. MaryJo thought this odd because Hannah was not a
Special Ed kid. No explanation was ever given. When Maryjo found
out who the 504 person was for the school she requested Hannah's
records. No one knew where they were, only to be found at the
district office. In turn MaryJo made a complete inventory of
everything which in Hannah's records and sent it back
to the school's 504 person. These school records did not have
many of the records MaryJo had in her personal collection which
she had been compiling for years.
At the end of the school year
(6th grade), during a monthly meeting, MaryJo was ready to
submit the recent assessment made on Hannah by an Autism expert
Dr. Meredith Goldberg-Edelson who found Hannah to be a person
with Aspergers Syndrome. Because MaryJo had a job interview, she
asked a friend to go and represent her. MaryJo empowered the
friend with a signed authorization from MaryJo. This had worked
in the past with no problem so MaryJo thought no more about it.
When the friend got to the meeting, it apparently was a meeting
to discuss Hannah's 7th grade placement (unbeknown to MaryJo).
Because MaryJo was not in attendance, the Special Ed director
for the Corvallis School District canceled the meeting and it
will never be known what became of the diagnosis documents
MaryJo's friend tried to submit on her behalf.
Because of this, MaryJo
requested Hannah be transferred to another Middle School in town
which was granted (with MaryJo supplying transportation). MaryJo
was hopeful that with a new school things would be different -
they weren't. In August 1997, the principal of the new Middle
School called a meeting with the district, Hannah's proposed
teachers, Hannah's teachers from her old Middle School, and the
lawyers for both sides. Neither MaryJo nor her lawyer could
attend the meeting and they had the meeting anyways. The
decision of the meeting was Hannah would be placed in the 7th
grade (even though Hannah did not comnplete the 6th grade) and
Hannah remained not eligible for Special Ed. Once again Hannah
would not be receiving FAPE.
MaryJo then decided placing
Hannah in the Public School System without an I.E.P only makes
Hannah worse so she enrolled Hannah in a small private school.
To do this, MaryJo had to have Hannah tested to see what grade
placement was best. MaryJo had the local Home School test Hannah
and it was found that the 6th grade would be the best placement.
Even after doing this, a truant officer contact MaryJo stating
that Hannah had been reported as not being in school!. Once
MaryJo explained that Hannah was enrolled in private school,
that was the end of it. The private school accepted Hannah and
committed to keep Hannah safe 1st and foremost and to educate
her the best they could. The private school knew Hannah had
Autism. Hannah's limitations were explained and accepted by the
private school. MaryJo did not ask nor did she expect the
private school would advocate for Hannah -- to to get an I.E.P..
Hannah's tuition was paid by family friends. Hannah did well in
a small school where the ratio was 1 teacher to 24 students as
opposed to the public school experience it was 1 teacher to 40
kids, few books and few desks.
Due to the on-unresolved mess
MaryJo asked Hannah's lawyer to file for a Due Process Hearing
to settle this matter once and for all. The Hearing was set to
begin on May 27 and 28th 1998. At first, it was to be held in
the school district office. Once MaryJo learned this, she
requested that the Hearing be held at a neutral site which
turned out to be a community center. At the Pre-trail meetings
(2) the school district requested (and was granted) Hannah be
tested. The only acceptable place for MaryJo was the place
recommended by COPE which was WOSC [Western Oregon State
College]. The school district also invited a representative from
Cascade Regional Autism Services (a part of Linn-Benton ESD)
[to] be present. Both Cascade and WOSC tested Hannah and their
findings stated there was nothing wrong with Hannah which would
warrant Special Ed eligibility.
David Lackey was chosen as the
Due Process Hearings Officer. According to MaryJo and numerous
witnesses, Mr. Lackey had his eyes closed for most of the trial
and appeared to be asleep. After two days of testimony it was
Mr. Lackey's ruling that although Hannah was Autistic, [she] was
not eligible for Special Ed becausewe Hannah's Autism had no
negative impact on Hannah's education setting! Of course MaryJo
disagreed with the findings, but all she could do is file a
letter of protest with the order. MaryJo had tried numerous
times through the years various means of resolving this conflict
at great [expense], but remains unsuccessful. There is no
justice for Hannah. Susan Moreno calls it an "educational
holocaust."
Despite the environment that
the private school offers, MaryJo and the teachers are unable to
provide Hannah with skilled training and assistance or related
services essential to Hannah's personal and educational
development. The state has made it clear that neither the state
or the Corvallis School District is responsible to educate
Hannah. If MaryJo wants to pay to educate Hannah or if MaryJo
wants to pay for some sort of training - fine, otherwise Hannah
gets nothing. MaryJo's oldest child is on his way to college and
so MaryJo needs to spend her money on him. Hannah will just have
to stay home and watch TV and eat. There is no furuture for her.
Hannah does not have the life skills necessary to be on her own.
Hannah can not care for herself.
At the present, Hannah has not
brushed her teeth (nor allowed anyone else for over a year.
MaryJo bathes and helps Hannah dress. Hannh is very aggressive
and untidy. Hannah eats vast amounts of food, watches TV, but
mostly stays home. Hannah can not get Social Security because
she does not have an IEP. MaryJo has appealed to her state and
national senators asa well as the governor, but there is nothing
they can do for Hannah. Hannah's story is familiar to many
people, and yet nothing haas changed. Hannah cannot get DD
Services because she is too high functioning. Organizations like
ARC can't help Hannah because she is too high functioning.
Hannah can't get social skills training, behavior mod, life
skills, job traininng etc. because she doesn't have an IEP.
There is no hope for Hannah. This is not fair and sad because
Hannah does have something to offer this world. She is bright in
her own way and with training could become a useful and
productive member of our society. MaryJo's greatest fear is if
she dies what will become of Hannah? Who will look after her?
______________________________________
To read a copy of MaryJo
Weaver's Hearing Order, please click
here.
© Copyright 1999 Oregon Parents
United Unless Otherwise Noted
All Rights Reserved
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