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Transcript of CARLY'S VOICE
Breaking Through Autism
Pervasive Developmental Disorder (PDD)
Autism Spectrum Disorder (ASD)
Carly was diagnosed with severe Autistic Disorder at around two years of age
Autism Disorder diagnoses is made when a child displays 6 or more of 12 symptoms across three major areas:
social interaction (such as the inability to establish or maintain relationships with peers appropriate to the level of the child’s development,
communication (such as the absence of language or delays in its development), and
behavior (such as repetitive preoccupation with one or more areas of interest in a way that is abnormal in its intensity or focus).
a motor-planning deficiency in which the muscles in Carly’s mouth failed to obey the directions from her brain.
She says she talks in hear head but cannot get the messages out through her mouth.
Obsessive Compulsive Disorder (OCD)
Carly has rituals and habits that she cannot stop herself from doing.
Carly needs to wash her hands with soap on the back and then front two times or else she feels as if she is being stabbed in the side.
Carly knows who she is, what she can and cannot do due to her disabilities, but she does not see herself as the girl with disabilities. Actually, it is as if she sees herself from within and does not fully connect her outer actions with who she is. I say this because her dad, Arthur, explained that Carly had been hitting her hair and moving in an even more unusual way than normal one day when hanging around some of her brother’s guy friends. He then tells that later that day she had told Howard that she had been trying really hard to flirt with the boys.
Barb had asked her son, Brandon, to talk with Carly via live chat from his college dorm room when Carly first started typing. Carly loved it and even ask him if she was cuter than most of the girls he knew; he of course said yes. She asked him this as she was slapping her hands, hitting her body parts, yelling, and rolling on the floor between typing words because it took so much out of her to type.
Carly says the worst part about having autism is not being able to control her body and that the best part is surprising others’ expectations of her.
They are all so proud of Carly and so thankful that she found a way to communicate to them. Everyone was originally told that Carly would never show empathy or personally connect to others but that was disproved once Carly was able to communicate.
They definitely recognize that they do not have a typical household.
Right off the bat, Tammy made sure to always dress Carly similarly to Taryn, in cute trendy clothes, even though it would have been easier to have her in clothes more commonly seen on children with severe autism.
They tried to make sure that Carly was part of the family even when it was extremely hard.
Arthur and Tammy felt bad for Matthew and Taryn because the attention was almost always on Carly. Everything was about Carly. They had a crew of people coming and going from their house to work with Carly from morning to night.
Both Matthew and Taryn excelled as people and never held a grudge when Carly would break their things.
They are all so proud of Carly and so thankful that she found a way to communicate with them. Everyone was originally told that Carly would never show empathy or personally connect to others but that was disproved once Carly was able to communicate.
If Carly did not have such a persistent and caring family, she may have never been able to reach her full potential. There is no doubt that their lives were made harder with Carly’s challenges but they loved and accepted Carly as she came.
Tammy moved mountains for her Carly.
While a young child, Carly would only
sleep for two or four hours a night
. She would wakeup, tear off all her clothes, rip apart her bed, destroy her and Taryn’s room, and throw herself against the walls. Usually Arthur would spend the night trying to calm Carly so she did not wake everyone else up.
If not watched Carly would go in the kitchen and empty out pantries and destroy everything in sight.
At around six years old she snuck out of the house, walked down several streets to get to the park, she took off all her clothes and was
going crazy in the park naked all alone
except for a woman stranger who did not know what to do. Arthur searched the house for her, could not find her and then went running around the city for her. He found her at the park they frequently visited. The woman stranger told her that she did not know what to do. He explained that she had autism and thanked her. They then put an alarm on the doors so they could hear when the doors where opened.
not potty trained
and would go to the bathroom in her clothes even as a teenager.
, once when the twins were very young and once when they were almost in their teens.
Tammy had to fight to get Carly into specialists and then would fight through paperwork to try and have to Canadian government pay for services.
Shortly after Carly first typed, she began having worse fits, stopped communicating, and started hitting her head and other body parts. She was covered in bruises and she was completely uncontrollable. Tammy had to
stay day and night in the hospital waiting room to fight to get seen
. Finally after a few days of Carly throwing her body against the walls of the waiting room, a specialist was sent in. They put her on even stronger medicine, which helped.
The family left Carly at home for many
because they would not enjoy themselves with her there.
Arthur and Tammy started to go crazy from lack of sleep so they decided to send Carly away to several
respite program homes
where they would take care of her for several days a week to allow the family time to rest.
Carly complained about being sent away from the family during the week, once she began typing. A few months went by and Carly told one of her closer female aides that she had been
. Arthur and Tammy took her from the place immediately but charges could never hold.
The family tried to start their own assisted living program but Carly refused so they then found another place that was small and run by a middle aged lady.
Carly did not like resourse programs with other
children with disabilities because they made her feel sad.
She stopped working or typing for 6 months until they put her in the public high school. She is stubborn.
Carly cannot be unassisted. She hits herself and is till extremely hyperactive but is making progress.
Amazing opportunities presented themselves as Carly learned to type. Carly began communicating with
electronic picture/world devices
. She would work for
Carly typed for the first time in March of 2005. Her family was on a vacation in Arizona while Carly was left at home with Howard and Barb. That day Carly was more cranky than normal. While sitting with Barb, Carly grabbed her output device and typed
“H-E-L-P T-E-E-T-H H-U-R-T”
with one finger. Barb and Howard were extremely surprised, gave Carly a pain reliever, and then called the family while on their trip.
Carly then spent time being encouraged to type with chips to talk to her family via instant messenger. She would often refuse to type sometimes for only a few hours but once or twice for several months.
Carly’s typing ability reached a
Canadian news channel
and then was viewed on
ABC news by Alan Goldberg
Carly tells her family that her dream was to have
Ellen DeGeneres give her bat mitzvah speech
, so Carly wrote Ellen a letter and then the family pulled every string they could to get the letter in Ellen’s hands. Ellen prerecorded her reading Carly’s speech and it was watched in the twins bat mitzvah. From that day on, friends and family were amazed by Carly.
Carly was then invited to meet Ellen. FYI: Carly loved Ellen because she would dance around and make funny noises like Carly.
A little later on, Carly was asked to be the
autism expert on Larry King Live
for Autism awareness.
She was allowed to attend an
advance philosophy class
during the 2009-2010 school year at a local public school for the first time and did extremely well.
Carly had the privilege of
introducing Temple Grandin at a conference
held at a university near Toronto.
awarded a Youth Champion award from DesignCare
and HollyRod in LA, California.
The public high school made arrangements to have Carly take multiple courses in mainstream classes with help from her support team.
Carly spreads her knowledge of autism through
Facebook and Twitter
right from the “horse’s mouth”.
Applied Behavior Analysis Program (ABA therapy)
– the psychologist and therapy teams develop plans on current behavior, and set goals for the student. Data is taken to track performance and remove the personal bias of the individual therapist. The child’s progress is driven by the child’s own ability
MEDEK (form of physiotherapy)
two months of it to get her walking.
– a speech therapy where the therapist, Barb, manipulates the student’s jaw and mouth into position
– flashcards with pictures on them in which Carly would have to point to the picture of what she wanted. This was very effective for Carly.
A series of specialized computer devices in order to get her where she is now:
iPad with Proloquo2go, laptop with (Kurzweil program, iPrompt and Read Please)
She also does
and meditates to help control her body.
She has around the clock assistance. Aides at school and aides at home. She has a rotation of several in a day.
It is hard to say what Carly's views are.
Carly wants to be independent of her aides and therapists, and wants to be like the other children at school.
At the same time, I think she knows how much she needs her support group. She is dependent on the people around her to help her through the battle.
Carly was able to go to the movies with friends, which is an amazing accomplishment.
As a child Carly was completely dependent on others but as she has grown and matured, a definite interdependent relationship has formed between Carly and the people in her life.
The family, Carly's aides/therapists, and her her friends now need caring for inspiration, strength and courage. Carly puts the idea's to do something in her head which causes amazing things to happen.
In a way, we all need Carly, especially the autistic community. Carly is a voice for everyone else who has not found their inner voice.The world needs a Carly.
Carly communicates with the world through typing out her thoughts on laptops and iPads.
Carly has lots of friends and is constantly gaining more while in public high school.
She likes being with her non-autistic friends because they push her to work harder and control her behaviors.
She likes the friends with autism because they understand her outbreaks more easily since they also have them.
People just like Carly are harder to find in Toronto so Carly loves her trips to California where more people with autism are able to communicate like she is.
Carly is an amazing young lady who has been able to be a voice and advocate for autism with the help of her family and team encouraging and motivating her along the way.
Her main drive has become an urgency to tell others about autism from, as she says,
“the horse’s mouth”
I think one of the most important messages Carly wants to get out is that inside every person with autism,
there is an inner voice that is trying to get out and that those who love them must not loose hope but keep trying.
Even when Carly was not able to type to communicate, she still understood everything that was going on around her.
Carly knows that she is
. Carly has a
, is able to hear people talking from others rooms while listening to what is going on in the room she is in.
She termed ability
and says that over time she has been more able to categorize and make sense of all the stored information.
Carly explains that the reason she cannot look at things or people directly is because
she takes a million pictures
of it all at once, causing an overload of information. She is able to process conversations more easily if she looks at the person who is talking
from the corner of her eye
Carly’s senses are much more heightened then most people so smells and textures can be so strong that it hurts. As a young child Carly
hated wearing clothes
because they hurt her skin so at every available chance she would tare them off.
She cannot eat certain foods due to their smell so she must put
dips that she really likes on them to hide their smell
Noises also give her a
so she has learned to cup her ear with her hand to help filter the sounds.
Global Developmental Delays
Carly was diagnosed at the age of two because she was missing most of her developmental milestones (walking, talking, playing, and following basic instruction).
Good Looking Syndrome
Carly has a great big personality so in her IEP she listed Good Looking Syndrome to be funny.
Explained in the book:
“Canada had no national program of support for children with autism and nothing akin to the IDEA act in the U.S.”
He wrote this book with Carly.
His profession is in the advertising industry and was the sole provider for his family.
He tried his hardest to work all day and then be wake up and handle Carly at night when she would not fall asleep.
While at work, he and Carly would instant massage each other once Carly leaned how to type successfully.
Big Brother: Matthew
Born five years prior to the twins and several months after the death of Tammy's mother
Is a great brother who always cared for Carly and wanted to help.
Labeled everything in there house so that Carly could read the woulds of everything. Now many years later, Arthur comments about reading toilet every time he goes to the bathroom.
The woman who made everything happen. Carly's appointments became her job. She fought through paperwork, doctor's appointments, and constant frustration so that Carly could have the same opportunities as everyone else.
She battled Lymphoma twice, once right after Carly and Taryn were born and again when the girls where in there early teens.
Teacher and Aide: Howard
He joined on in 2001 and quickly became the family's saving grace.
He could calm Carly down faster than anyone else.
He surprised the family by teaching Carly to swim
Carly refused to type in the beginning unless he was by her side
He has stayed with the family and with Carly through everything and remains one of Carly's best friends.
Twin Sister: Taryn
Carly's older sister by a few minutes.
Happy and full of life.
When they were little, Taryn was the only one who Carly would play with.
She was always supportive of Carly, even after Carly would break her things.
Carly's speech-language pathologist:
She began working with Carly when she was 2 or 3 years old and has stayed a permanent fixture ever since.
Her belief that Carly had more inside that needed to come out is what set the stage for Carly's success.
Arthur's words about Barb: "Barb was part mother, part teacher, and part magician. A petite woman, then in her early forthies, she had a quiet, confident demeanor."
Presented by: JaCkIe MuRpHy
Arthur tells Carly’s story through his eyes. He explains to the world how at times he just wanted to yell at her, to stop and be normal. He talks about the beginning when Carly and Taryn (twins) were first born and how right off the bat, Carly seemed so different from Taryn. Arthur and Tammy noticed quickly how different the two acted. Taryn was a happy baby who giggled and smiled while Carly would cry and scream, no matter what they did to comfort her. The book illustrates life with Carly; the good, bad, and everything in between. The book ends as Carly is finally finding herself as a teenager who is able to express her thoughts and even able to enter into mainstream high school courses. At the end of the book, one whole chapter is written by Carly. She explains herself and shows the word what a smart and funny girl she truly is at heart, underneath her uncontrollable exterior. The third to last chapter is filled with questions and answers from Carly’s Twitter page, followed with a chapter on her IEP for the school year, and then the book ends with a chapter of “thank you” from her father. The book was so much fun to read and I am so happy to have had a chance to meet Carly through the pages of text. I have a completely different understanding of autism, now, after reading this book.
In the beginning of the book, I was filled with sorrow. Arthur is so descriptive of the hardships the family had to go through in caring for a daughter like Carly. I remember talking to my boyfriend about the book and telling him about how, Tammy and Arthur's lives were so difficult due to Carly’s disabilities. Everyone hopes to come home after work to a happy family dinner, play sports with the kids, help with homework, and then find a little time to unwind. While at home with Carly there was not time to relax. She ever stopped; once she was done destroying one thing, she was on to the next thing, running and screaming around the house. Money was very tight because of all Carly’s hospital and therapy bills not covered by insurance and the government. I know this is horrible to say but it is enough to make a person think twice about starting a family. Finally towards the end of the book after all the ups and downs, the family and Carly have a handle on their lives. The good times provided a way to handle the bad, and, oh boy, they have been able to see Carly do amazing things. I am amazed by Carly and by her family’s strength.
A final thought, I wonder if Tammy’s difficulty in having children and then seeking fertility treatment had anything to do with Tammy’s lymphoma and Carly’s autism.