NORMAN DEAN LEE: ADAM AND
BRYAN
My name is Norman Dean Lee and I am the father
of two autistic boys, Adam and Bryan Lee aged seven, born March
24, 1992.
My wife Zhen and I also have a ten year old NT
daughter Nancy who is a fourth grade student in the Hillsboro
public schools.
Where do I begin with our sordid tale of
deceit and treachery from our associations with the Portland and
Hillsboro school districts? It is difficult for me to accept
that it has only been since January 1997 that I became aware of
how badly under-serviced we were from the people who we trusted
and believed had the best interests of our children in mind. The
parents of children with autism deeply love and cherish their
special needs children and all of us deserve to be treated with
respect and dignity.
Looking back in time, our children were born
by Caesarian section at the Bess kaiser Hospital in Portland .
Our children were happy children and we were so happy with our
new twin boys. There were warning signs like head banging,
rocking, self-stimulatory behaviors and slow development of
speech but we were not overly worried due to our ignorance. A
key date is November 1995, when we took our boys to see our
Kaiser-Permanente pediatrician and asked what was wrong with our
boys? We were referred to a Kaiser speech pathologist for an
evaluation and were referred to either the Kaiser Developmental
Clinic or Portland Early Intervention. We learned much later
that both
The speech pathologist and physician strongly
suspected autism but they kept their mouths shut. We had decided
to accept services from early intervention but our Kaiser
professionals quietly warned early intervention of their
suspicions without telling us.
The early intervention professionals evaluated
our boys in December of 1995 and they were found to be
Developmentally Delayed (Non-categorical) with 2.33 standard
deviations below the norm that ranked in the 1st percentile. Our
son Adam is a severely autistic child and deserved much service
at this early date for an appropriate education. Bryan also had
many of Adam's deficits such as major fine and gross motor
delays, undefined play skills and severe speech delays. Both
children were far behind academically for neither child could
color, write, read a book and desperately needed intensive early
intervention on a 1-1 basis for them to have any chance to go to
school with their neighborhood peers.
Our children were given the standard 40
minutes of speech and 20 minutes of Occupational Therapy that
Portland Early Intervention routinely provides all of their
children with disabilities. The boys were placed in a supported
integrated classroom without the skills to meaningfully benefit
from the classroom. Naturally, they made no progress. From
February 1996 to June 1997, we became increasingly aware of the
possibility of autism and in the spring of 1997, finally
received an educational diagnosis for autism for both boys.
The spring of 1997 was a very traumatic time
for my family. The autism diagnosis shattered our self-denial
and forced us to actively advocate for the wellbeing of our
boys. We were forced to educate ourselves and we began to speak
with other people like Donna Kipps of FEAT of Oregon, Kathy
Henley at OHSU and current OPU member Dale Lucht for their
advice on what to do. At our 1997 IFSP and IEP meetings, we
demanded and received an ABA program from early intervention,
with additional family consultation from Project Pace (an ABA
program). Suddenly, both boys began to learn. Bryan learned his
alphabet, colors, numbers, etc and Adam began to speak after
floundering for 16 months in Early Intervention. These intensive
services clearly benefited our boys and we had real hope for
them.
We had numerous IEP meetings with the Portland
Public Schools in the spring and summer of 1997. We were quite
dismayed when the placement team decided that an appropriate
program for our boys was a life-skills classroom for Adam and a
developmental kindergarten for Bryan. We were given vague
promises of intensive services in these classrooms but
discovered that our boys were to be placed in long-term self
contained classrooms with little hope of entering the regular
education settings. After much thought, we rejected these
services and we self-funded a Project Pace program for both boys
for the 1997-98 school year.
Homeschooling a child with autism is a
demanding task and we could not financially fund programs for
our twins ourselves. We had no support from the public schools,
Multnomah County Developmental Disabilities or Kaiser
Permanente. We felt very alone. Our children continued to learn
but we needed the related speech and Occupational Therapy
services that were a part of the IEP but were denied to us when
we rejected the services offered by the Portland Public Schools.
Instead of allowing those services to which we agreed to be
delivered, the school district had bundled them as an
inseparable package with their placement recommendation for the
boys. Since we rejected just the placement, they refused to
provide the agreed-to related services. Their refusal was not in
compliance with the separability features of IEP items outlined
in IDEA. Realizing its action would not survive the scrutiny of
a Due Process hearing, the school district settled with us
concerning these matters when we later filed a request for a Due
Process hearing.
During the fall of 1997, events took place
that changed our whole outlook. I had requested to view my boys'
educational files after first I had viewing their files at the
county Developmental Disabilities Services office. I discovered
documents that clearly showed that Early Intervention
deliberately delayed diagnosing our children for autism. I found
written referrals to Columbia Regional Autism Services, the
Oregon state provider for autism consultants for our public
schools. Documents from Kaiser Permanente indicated their
clinicians had a strong suspicion of autistic disorder. These
documents were all dated from November of 1995! Autism is a
serious neurological brain disorder that requires much
specialized services at the earliest date possible for best
outcomes. We felt the autism professionals violated our trust in
denying us the information we needed to make an informed
decision on the services for our children. We were determined to
find assistance in advocating for them.
We brought our findings to the Oregon Advocacy
Center. Staff attorney Chuck Levin filed for due process for our
son Adam in December of 1997. We settled in mediation for
substantial compensatory damages in February of 1998. We felt
real hope that the Portland Public School District would
reconsider its longstanding refusal to deny the only services
that have been shown to be effective for our boys. We were
mistaken. We found that after we signed the agreement, the
pretenses of real remorse expressed by the school district were
forgotten and it resumed its policy of denial of services to my
children.
We had 4 months of IEP meetings for our son
Adam during the spring and summer of 1998. With both patents
objecting, the IEP team concluded that the same public school
classroom placement we rejected earlier was considered
appropriate. Not wanting to face the prospect of another wasted
year with the Portland schools, we decided to move out of the
Portland district in the hope that a change in scenery would
help our twins.
Following our experience in Portland, we
dismissed our previous private autism family consultant and
secured the services of another person. We settled in Hillsboro,
a suburb of Portland, in time for the beginning of the 1998
school year. We had recently discovered that the new Child
Development School of Oregon (CDSO) would soon open. Oriented to
the ABA model but including other therapeutic and training
approaches, we were hopeful that this new school would provide
an appropriate education for both our boys.
In September of 1998 we finished our move and
restarted our boys' educational programs with our new
consultant. To our dismay, we discovered that the payout for our
son Adam's compensatory damages was compromised by our move to a
different school district. Although we were in discussion with
the Hillsboro School District, we did not enroll either of our
boys in their schools. We began a new IEP meeting for Bryan in
October of 1998. The new CDSO school opened in October of 1998
and we enrolled both boys into a program that is clearly
appropriate for them.
The new school's tuition is quite expensive.
It costs $2755 for a 30 hour/week program for a single child. We
badly needed our son Adam's money from his compensatory damages
agreed to in our Portland settlement. We hoped that our new
school district would help us with paying for the program that
clearly is benefiting our boys.
We had 8 IEP meetings for Bryan over a span of
3 months during which the district offered to provide related
services and wanted to place Bryan in its autism classroom at
Lenox. Adam's money was still being withheld from us and paying
$5000 per month for educational services was draining our life
savings and compromising our future for which we had
painstakingly saved. We visited the Lenox autism classroom in
November of 1998 and were not impressed. We found the data the
school provided us about other children's progress at Lenox to
be only based on anecdotal information and no hard, objective
reports. When we went to the school and questioned some of the
parents of children attending it, we became convinced that the
eclectic, unstructured approach used in the classroom would be
ineffective for our boys. Further discussions ended up in
stalemate with our school district and they challenged us to try
alternative conflict resolution (mediation). We refused because
of our of suspicion that they would not be approaching mediation
in good faith and would further delay the resolution of our
issues.
We are not parents who seek confrontation. The
lack of honesty displayed by autism and school legal
professionals has left us bitter. At every turn, we have had to
fight for the basic rights of our children to have a Free
Appropriate Public education. It took the Oregon Department of
Education 6 months to investigate the bonafides of CDSO and our
consultant before they released the settlement money awarded in
the Portland case. The money started to flow in March 1999. In a
span of 18 months we have filed two formal complaints and two
requests for due process hearings. We filed a formal complaint
with the ODE over the lack of services for our son Bryan from
Early Intervention. Now we were filing against the Hillsboro
District for not allowing two independent educational experts,
Dr. James Mulick and Dr. John Jacobson, to visit the Lenox
classroom and evaluate its suitability for our children.
At the end of May, 1999, we had a Due Process
hearing, and our complaint regarding allowing independent
evaluators to observe the Lenox placement was dismissed after an
hour during which the school's attorney argument was allowed,
and all of our proffers of proof were rejected. The message the
Hearing Officer sent is that parents need only attend IEP
meetings, but they are not entitled to play an active role in
planning for their children's special education. Parents are not
always the most informed people in the world and to be told that
we only need to be physically present for the entire IEP process
to be legitimate is most distressing. His decision follows a
string of identical findings against parents' rights. Why should
parents even try this avenue when the formal complaint process
only appears to serve the interest of endorsing non-compliant
school district behavior?
Even in the monetary settlement against the
Portland Public Schools, the only reason we prevailed was due to
the illegal withholding of critical diagnostic information by
public and publicly-contracted authorities. The money owed our
children was for compensatory education. The state considered
Bryan's minimal progress despite the best efforts of the
Portland schools to deny him adequate and necessary services as
evidence that the district had provided him some services. The
Hearing Officer in our second hearing adopted the school
district's logic that any progress it could promise was
sufficient, and therefore met the test of the offer of FAPE. A
promise to provide inadequate services is not FAPE.
We don't have time to watch our children
continue to fail in order to prevail!
It is now May 1999. We have had to fund our
boys educational programs for almost two years. We have had no
services from the public schools in Hillsboro and Portland in
two years. We face financial difficulties in meeting the special
needs of our children and continue to deal with the rigid,
unyielding attitudes of special education administrators. The
question is it worth it? The answer is YES!
Our son Adam has been at CDSO for six months.
Adam was previously a non-speaking child and has met and
exceeded his IEP goals and objectives. He is now speaking in 4-5
word sentences in English and can initiate conversations and
converse about his needs. Dr. Mulick has informed us that Adam
would no longer test in the severely autistic range and
academically has learned his alphabet, colors, and numbers. He
is not the hopeless case that special education people have been
saying for all of this time.
Bryan has made immense progress. He is a child
who first tested in the 1st percentile at 3.5 years old and has
progressed to the point that he is attending a private school
kindergarten classroom for 3 days per week. He is being accepted
by his classroom peers and with work, he may be ready for a
first grade inclusion classroom this fall. With proper early
intervention and public school programs, Bryan would be
finishing first grade without a classroom aide.
The future for Adam and Bryan Lee remains
clouded. The Hillsboro school district continues to refuse to
offer appropriate services to our family. Parents are being told
that the schools only need to help disabled students' families
cope with the present deficient services being offered. School
districts are saying that parents like myself are merely
choosing one equally appropriate program over another. They
continue to insist that they have met their legal obligations
despite not having provided any services to our children. I feel
that our schools have to decide whether they intend to be
educators and actually embark on attempting to educate our kids
or whether they will continue to warehouse our children while
patting parents on the head for also being pliant victims to
this scandal. Their notion of special education appears to be
daytime respite care for parents while the children remain
warehoused in unsuitable placement; forget the real educability
of the children! My wife and I have real aspirations for our
autistic children. We believe in them.
We are determined to provide for the wellbeing
of our children despite the refusal of others to do so.
Norman Lee
May 27, 1999
7445 NE Shaleen
Hillsboro, Oregon 97124
690-5565
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