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Linda Newland: "CASS"
My name is Linda Newland and I
am the mother of three children. My oldest Nicole (10 years old)
was born with craniosynotosis (a fused skull), corrected by
surgery at 4 month old, my 7 year old son, Cass, has been
diagnosed as having Asperger's syndrome (high functioning
autism), and my youngest daughter, Brittnay has been diagnosed
as having A.D.H.D. (Attention Deficit Hyperactivity Disorder),
so you can see I have been walking this road for some time.
Cass was born in September of
1987. He weighed 8 lbs. 8 ozs. and measured 21 inches. His apcar
scores were in the normal range. The pregnancy was normal with
the exception that I miscarried and had an D&C and 9 weeks later
miscarried again, saved the tissue and was advised that I was
still pregnant with Cass. The answer, maybe the D&C didn't take,
maybe it was twins and the stronger one pushed the other out. I
was so elated over the news that I was still pregnant, that I
didn't care at the time. We had been trying for over a year to
have a second child. The pregnancy and the birth were rather
uneventful, other that he was breech hours before he was born. I
was literally scheduled for a rotation minutes before he was to
have been born.
When I tried to breastfeed
Cass, he had a hard time sucking. It literally took him over two
days to get the hang of it. I was afraid that he was going to
starve to death. My memories over the first two years are rather
unremarkable. He walked before he crawled, and what a joy he
was. It was not until he was 2 years old and speech started to
surface that I realized that something was not right. His older
sister, Nicole, spoke crystal clear from day one. Cass spoke in
gibberish and still does. I voiced my concerns to everyone who
would listen and was told that I was being overly cautious.
"Maybe it is developmental; boys are slower then girls ...give
him time."
In October 1991, we saw an
article in our local paper that featured the Scottish Rites
Speech Clinic as well as Early Intervention. The article had a
beautiful picture of a young boy by the name of Alex Grech as
well as a phone number. Though we were redirected from the
Scottish Rites Speech Clinic, Cass was screened for Early
Intervention Services. He showed a 72% delay in expressive
language, a 64% delay in receptive language, and a 53% delay in
the capacity to relate. Cass entered a preschool for
developmentally delayed children in November 1991.
As the days slipped away, we
became concerned over what we considered to be strange or
bizarre behavior. His obsessive compulsive behavior, especially
with toys. His resistance to change, his insistence on sameness,
poor gross motor skills, being overly cautious, not wanting to
get messy, tantrums when anything did not go the way he thought
it should, and most importantly his speech, for the most part,
was still gibberish. As time rolled on his anger and frustration
from not being able to communicate were taking a toll on Cass
and the rest of us.
In August of 1992, Cass had a
complete psychological evaluation along with a I.Q. test. His
verbal I.Q. was 72, his performance was 104 - full scale I.Q.
was 86 (low average range). The diagnosis? "An adjustment
disorder with mixed disturbances of emotion and conduct;
obsessive compulsive disorder-rule out developmental
articulation disorder; developmental expressive language
disorder; autistic characteristics". Once again we were given
more labels and sent out the door with no help other than the
fact we needed family counseling (no kidding!!!!). This was the
first time 'autistic characteristics' ever entered the picture.
After that the tests were
numerous, ranging from more intense speech, language, hearing,
genetic, to psychiatric screening. We brought in a head trauma
specialist, along with a occupational therapist. We saw the head
of neurology and a neuropsychologist.
In the meantime, I wrote
letters to everyone and anyone requesting information on that
one word I had heard months ago ..."autism". You see, up until
this point my only frame of reference was a child that was
mentally challenged and a head-banger. I literally read
everything I could get my hands and was astonished by what I
found out.
In February of 1992, I
requested an evaluation from the school district for autism.
"The team identified deficits and discrepancies in the area of
communication, however did not feel that Cass' speech and
communication deficits fit the overall profile that children
with autism often display. "Cass displays some behaviors and
characteristics often associated with autism, some of which are
difficult to interrupt". Unhappy and uneasy with their opinion,
I called the head of our chapter of the Autism Society of
America, (ASA) along with the National ASA office. They asked
me, "Who have you been talking too? Being a little bit autistic
is like being a little bit pregnant" They then referred me to
the "Study for Autism Research" in my home state. People there
were wonderful. They immediately sent me some information on
high functioning autism as well as Bernard Rimland's E-2 form
for Behavior Disturbed Children. We filled it out and received
the results within two weeks. Cass received a score of -7. A
score of -2 is an average score for a child diagnosed as
'autistic' by professionals world wide. Again, I was left
baffled. How could this be? My answers were not that off. What
did I say that threw him over the edge? Even at this point, I
don't think I understood the ramifications of what the autism
spectrum entailed. That would come much later.
I called the Study for Autism
Research again, and asked for the name of the closest
professional, one who saw many children that were like my son,
children who had been identified as 'autistic-like', 'borderline
autistic', 'autistic characteristics', etc. We got lucky, as we
were told there was a man in our state by the name of Gene
Stubbs, M.D., in Portland whose practice was 50% children like
my son. The diagnosis was 'autism' with an emphasis on "Aspergers
Syndrome" - high functioning autism. We came home feeling
relieved and I slept soundly for the first time in months. I
think we always knew in our hearts that this was inevitable.
You would of thought I would of
been able to parlay that into more and tailored services for
Cass in the school district, but the school district was not
buying the diagnosis; they even made fun of how the report was
written. Looking back, I think, "What nerve! Who were they to
discredit a specialist recognized for his research in the field
of autism? That's ignorance and arrogance rolled into one
package. If any of you have ever dealt with the school system,
you know what I am talking about. "they"know" what they know is
true. Whatever will they do, if it's not true?.
It was to take many more
months, an EEG and MRI (that were normal, although their were
discrepancies in the reading of the EEG by three neurologists).
We were unable to get another EEG done, because Cass had a
reverse reaction (aggressiveness and violence) to the medication
they had given him, which were Demerol, Thorazine Phenegan,
Phemabaritol and Choral Hydrate). We have been unable to do
another EEG to date, because of the issue of medication. Cass'
sister had two seizures, I had seizures for the first five years
of my life as well as my sister, mother and grandmother. So to
date we have yet to rule out seizure activity and this is
important because there is a new card on the table, the
possibility of Landau-Kleffner Syndrome.
Cass was finally recognized by
the school district and our regional program as a student with
mild autism in November of 1993, (9 months after my initial
request for an evaluation), after I literally said enough is
enough. If you do not like r.Gene Stubbs' report, I am
requesting a independent evaluation paid for by the state. Give
me another opinion or label. I would welcome it!!!. They finally
caved in. I don't think they wanted to come out publicly against
Dr. Stubbs.
The label of autism has left
many people in my community feeling uneasy as they see the
stigma of a label and feel it is not a accurate fit for Cass.
But we are now looking at autism on a spectrum, with everything
from learning disabled on one end to severe, profound autism on
the other end. Where do you drawn the line? Some say it would
take the wisdom of Solomon.
That was two years ago. Where
are we now. Cass just finished first grade. He was totally
mainstreamed in a 1/2 blend. (the State of Oregon is TOTALLY
mainstreamed!) Academically he finished at the top of his class.
The school district gave him another psychology test since it
had been three years since the last. The results this time?
Verbal I.Q. - 96-106, performance I.Q. - 122-136, Full Scale
range 112-126. The psychologist felt that his over all score
will improve over time when the verbal comes up. His report
confirmed the presence of autism based on the fact there was
great discrepancies in his sub tests. We all agree he is one
smart cookie, but than again, I never said he was stupid. I
think most people's perception of autism is what has been
portrayed in the media, which is normally your lower functioning
kids.
I wish people could understand
that autism hits across the board and there are so many
different shades, but the thread that weaves all these people
together is that it is a life-time disability and even its
residual effects can play havoc on ones life.
I been very lucky and have been
able to provide outside speech and language therapy, OT and
recently had a social skills trainer come into my home twice a
week. He was provided to me through County Mental Health. The
bad news is the social skill trainer is frustrated at the lack
of progress due to Cass' emotional disequillibrium. CASS is
playing a lot of oppostional defiant behavior and Mental Health
feels they have gone as far as they can go. They are
recommending a day treatment program. What's next? A residential
program? Why not lock him a way? That way no one will have to
deal with him? And he is supposed to be so high functioning?
It took me twelve times at the
[IEP Team meeting] table this year with the school district just
to get a personal visual schedule, some social stories, a social
skills group with the counselor, and some intervention on the
playground during recess and lunch. You would think I was asking
for the moon, and all of this was in his I.E.P.. From the
beginning they in violation for noncompliance with the law. They
just did not see a problem with Cass. What a love he is," I was
told over and over. "Are you really sure he is autistic? I have
been a teacher for 20 years, trust me, it's a gut feeling, there
is NOTHING WRONG WITH THIS CHILD!"
I think this is going to be my
greatest battle, fighting people's perception of autism.
Fortunately for Cass, I have removed him from that school, so
next year I start all over with a new team. Will things change?
I'll keep you posted.
Cass is a 7 year old boy who is
very bright and a perfectionist. He has a hearty laugh which
gives us great pleasure listening to. He has a gift a gab and
chatters up a storm morning, noon and night, but unfortunately
50% of his speech is unintelligible and lost to the world. It
breaks our hearts that we are missing a great portion of his
life.
Cass is loving and
affectionate, although when he hugs and kisses you (which he
loves to do on his terms), it is like kissing the very rich. The
lips go out and he barely touches you. "Let's do it, but don't
get too close, "he seems to say. It's hard to explain. He wants
the comfort, but can't seem to totally connect. Maybe it's part
of the sensory integration dysfunction. Cass has a severe
speech/language impairment plus emotional and behavioral
problems stemming from his disabilities. His gross motor skills
are very weak. He does not jump, run, skip or hop like normal
children. He is very awkward and uncoordinated which goes hand
and hand with articulation problems.
Cass spends hours lining
objects up in intricate patterns. It must give him some
pleasure. He pays attention to the smallest detail and every
object has to be in the right place. If anyone touches the
object there is literally hell to pay until the object is
returned to its proper place.
Cass spends a lot of time with
his hands over his ears claiming the sounds hurt his ears. One
hearing test confirmed he has hypersensitive hearing.
Cass' major weakness is with
his communication skills or lack thereof. Due to his poor
articulation, most of his words come out garbled. I can't
imagine what it must feel like to have so much to say and not
have the skill to express it. On some days his speech does not
seem to be that noticeably affected, but on other days he
rambles on and on, and much of it is lost to the world.
Cass gets very frustrated and
angry when out of frustration his communication comes to a
"screeching" halt. After all, how many times does one have to
say something before one is understood? Cass' speech has often
been compared to that of a stroke victim. At least they have a
frame of reference of what speech was like before they lost it.
He has no idea, because he didn't have the means of pre-verbal
expression even before his speech was to surface.
Cass is very close to his two
sisters. They have developed a method of communication for the
most part - but it breaks down frequently and everyone involved
is left frustrated and angry. Harsh words are exchanged, doors
slam and more damage is done to sensitive minds who don't quite
understand the roles they have been asked to play.
OUR DREAMS - We dream
that one day we will wake up and Cass will be able to
communicate clearly, have great self esteem and control over his
gross motor skills, and anger. His sensitivity to sound and some
of his strange behavior will vanish. To have him wrap his arms
around me without treating me like a china doll will be a sign
from above that all is well.
We envision Cass playing
football and basketball, etc., and being active in all the
childhood activities he needs to help him in his quest for life.
We dream that his slow start in
life will be a constant reminder of his roots and he will learn
patience, understanding and tolerance for those with challenges
in their life, for with love, understanding, advocacy and
courage, one can overcome anything. Our greatest dream of
course, is that as he lives his life, he reaches his full
potential, and that we instill in him is that the brass ring is
his for the taking. All he has to do is reach.
I was stopped a few years back
by a man in a grocery store. Cass was babling on and on, making
no sense and this man told me, "this kid is going to be an
attorney. Trust me. I have ten kids and three of them our
attorneys. They all started out this way". Vicki and I often
laugh and say, "Well. no one understands attorneys anyway."
OUR NIGHTMARES - Plain
and simple. That the life we are leading will never end.
Sometime I feel my life is like the movie "Ground Hog Day", and
I am going have to relive this every day until I can find the
key to unlock the mystery to the world Cass is living in.
But all in all, I would not
trade my live for anyone's. Three years ago I was frightened of
autism; now I embrace it.
Cass is extremely intelligent,
creative and the love of our lives. Like Alex, he can also be
our worst nightmare. He is getting bigger and stronger and now
we are dealing with a safety issue.When IEP Teams fail one after
the other, all they think of doing is to literally pass the
buck. I get so frustrated sometimes, I want to scream and say,
'can't we eliminate the middle man and cut to the chase? Where
do we need to be?". If I suggest, "Let's bring in someone to
consult, someone who is an expert in autism and kids like this,"
they get offended, because they consider themselves to be
experts and who are you, a parent, to oppose them?
Well I'll tell you who I am. I
am Cass' mother, and if he has any services, it is because I
fought for them. I am his case manager and no one will every
love or fight for him like me. I will NEVER GIVE UP and you can
take that to the bank!!!!!!!!!!!!!!
Children like ours often fall
into a gray area. Too often they have been called a 'diagnostic
dilemma". They have characteristics of some syndromes but not
enough to warrant a label. A label from the medical community
does not guarantee services from the school district, but that
is the catch 22 - without that label services are meaningless or
nonexistent.
We know are children's lives
are not going to be easy and neither will ours. The only promise
we can make them is that we will always be by their sides
advocating for services and their rights, while always
continuing to look for answers to ...'why?' and 'how can I
help?"
Like a fellow parent said,
"We know our stories are not
good stories, but we tell our stories so that someday, parents
and professionals like you can tell us good stories".
Linda
______________________________________
[This article was written more
than two years ago. As of February, 1999, Cass's reading scores
continue to plummet to the point where now he is 2.7 years
behind in the third grade, yet the school insists there is
nothing amiss. Linda's youngest, Brittnay, appears to be
following her big brother--her reading scores are also failing
to progress. Linda is in a state of genuine despair regarding
the likelihood of ever receiving a Free Appropriate Public
Education for her two youngest children, but continues to meet
with her IEP Team with the hope that something will happen to
address her childrens' failure to progress and actually regress
in some basic academic areas. During all of this time Linda has
advocated on behalf of the children of other parents in Central
Eastern Oregon where she lives. Her Co-founding of OPU is a
testament to her resiliance and hope not only for her children
but countless others with "invisible disabilities." rnm]
© Copyright 1999 Oregon Parents
United Unless Otherwise Noted
All Rights Reserved
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