Carly’s Voice:
Breaking through Autism
The American Psychiatric association defines Autism as the
following:
“Autism Spectrum Disorders* are a range of
complex developmental disorders that can cause
problems with thinking, feeling, language, and the
ability to relate to others. They are neurological
disorders, which means they affect the functioning
of the brain. How autism disorders affect a person
and the severity of symptoms are different in each
person.”
complex developmental disorders that can cause
problems with thinking, feeling, language, and the
ability to relate to others. They are neurological
disorders, which means they affect the functioning
of the brain. How autism disorders affect a person
and the severity of symptoms are different in each
person.”
The American Academy of Pediatrics states that 1 in 166 children
have autism.
There has to be an impairment in the following categories in
order for a child to be diagnosed with Autism:
·
Communication
·
Socialization
·
Repititive/Stereotypic behaviors
The early years :Early
Childhood and Elementary Years
Our story begins with a vignette. A day in the life of
Carly. We see immediately the heartache
and pain of having to raise a special needs child without all the tools and
support at first
She has escaped the nanny’s care
while she was upstairs getting her bath ready. After a panic stricken search
.We find Carly , naked in the park swinging.
Fortunately a kind stranger stood nearby but was relieved when her
Father came to get her . I can relate to
the weight of terror that settles on your heart
when you are searching for an autistic child that wondered off. We had just moved into our new apartment in
July 2013 . While I was fixing lunch,
Zaria my daughter with autism wondered off quietly. When I realized she wasn’t in the closet. I
had to look on property. There are two
swimming pools what if she has fallen in?
What if she is in the car of a stranger?
These thoughts plagued my mind for what seemed like the longest 20
minutes of my life. Besides being
autistic my child has an IQ scare of 70.
I was gripped by fear as I searched the grounds she wasn’t by the pool
behind our unit, neither was she near the next building over. Zaria was in the third section in the back
sitting in a tree as if it was the most natural place to be. Like mommy where else would I be? Her face
seemed to say. I was surprised, mixed
with relief and frustration. I knew she
didn’t understand but it didn’t make my waking nightmare any more bearable.
I
like how Mr. Fleishman used foreshadowning in the beginning. Youa re experiencing the early years as they
experienced them with dread mixed in with a lot of hope. They walked the fine
line of not being sure of what could be
done but adamant of determined not to give in .
Also what was interesting was the makr contrast in development from
Carly’s fraternal twin ,Taryn who is autistic.
By the time Carly was two they noticed a “dozy gaze”. She didn’t crawl like her twin like a stuck
crab on her back that couldn’t quite get away.
At 10 months a language delay was noticed and by the age of two her
symptoms became more pronounced but doctors couldn’t really explain the lack of
progression. I can definitely relate to
the general feeling of helplessness you feel in the early childhood stage. Her speec h delay would be known as “apraxia”
a motor planning defiency in which the muscles in her mouth failed to obey
the directions of her brain” In addition to the Pervasive Developmental
Delay it was a very broad term used to describe several conditions ,that include autism. To add to the famalies struggles
Tammy, the mothe r was diagnosed with lymphoma ,at a time that would’ve
been the death blow to a family that wasn’t as committed. So for a time they had to focus on Tammy’s
recovery. Parents have to take care of
themselves in order to be able to take care of their children. Anyone who has ever flown on a airplane knows
that they instruct to put the oxygen mask on yourself first ,then the child.
Why? If something where to happen to the parent the child would not survive. Self care is vital and necessary. Carly
then began her occupational therapy, as well as , a gluetin diet. Once they included Applied Behavorial Thearpy. At 50,000-60,000 it seemed like it was a
momumental sacrifice but a necessary one.
Canada doesn’t cover these services so after 2 years they had to
reconsider public school again. As long
as there was an ABA tutor to assist in the classroom it was feasible, but when
they tried to replace the tutor with an accountant to satisfy union
requirements from the school district it was time to make a change once
again. The Fleishcmann’s converted the
basement to one room school for Carly where her Speech Thearpist ,ABA helper
and her assistant Howard. It really does take a village to raise a child. Onde day at the age of 11 Carly typed “Help Teeth
Hurts” in her communication device (Dynavox). It surpised Barbara and Howard
who spent the most time with her .
According to the doctor’s prognosis there didn’t seem to be any reason
to believe there would ever be a comprehensive thought let alone the ability to
communicate it.
The
later years: Preteen and high school
Her parents also utilized respite
care at Cedarview meaning that Carly would
live there a few days of the week. Carly inspite if her great strides at
communication she still couldn’t sleep through the night. It also gave Carly a chance to form another
relationship . Something that would’ve
been difficult to do on her own. Carly’s
Bat Mitzvah also provided another turning point. Through lots of sheer
determination and the gradual support of
her parents She was able to convince Ellen Degeneress to read her speech(via
prerecorded DVD) Her world opened up in
ways that no one could’ve have imagined.
It gave their small community a chance to experience Carly in a real
concrete way. There needed to be something beyond the image of the girl who flaps her arms and makes strange
sounds. Underneath that was a thinking,
reasoning person who had emotions just like you and me. Except we all knew it
. What is truly interesting to me is
that even though she went on to do an interview on local news,20/20 and Larry
King . She still had to prove she was
intellectually and physically able to sit in a mainstream high school ! Carlton high school for special needs kids
would become the bridge into Western a
main stream high school within there district.
By 2009-2010 would be considered an “experiment” they would try it out
for three times a week (1 hour). By the
2010-2011 She attended Western full time and two of her classes were for the
gifted. I found Mr.Fleshmaann’s writing
style very eloquent, honest and insightful.
He did a great job of letting us experience his journeythe same way he
did. I was inspired as an parent of an
autistic child it didn’t feel like I was alone.
Yes there are resources but they can’t capture the essence of the
experience like he did. So I would highly recommend this book to
parents/caregivers want some insight on what it’s like for the child and the
parents
